My Daily Journal

September 30, 2015 (Wednesday)

Okay wow guess it's been awhile!

I just received my third shipment of Plexus so I am going on three months. Well technically two months straight taking it right now.

I do not have any increased energy. Matter of fact I still battle extreme fatigue and am ready to crash around 1pm everyday. So no improvement there. I was really hoping for improvement there as that's one of the biggest success stories I have heard from folks.

But I do seem to have improvement in my knees and joints. Before Plexus, and after stopping antibiotics I was getting bad pains in my knees again. That has subsided much since taking Plexus.
The other improvement has been my bowels! I suffered greatly with extreme constipation and I have to say I do not have that issue anymore! I believe that's due to the Bio Cleanse I take.

I do not see any weight loss benefits. Would be nice but no weight loss. Sigh.....

So for now I can honestly say I do see some improvement but not enough to get me hooked on Plexus. So I will finish this months supply and see how I am doing.

I still go green smoothies as well for morning and lunch, but have a normal dinner.

As far as Lyme goes, I still think the abx killed it and now I am just dealing with a damaged body. I still think I have bartonella in my brain as I do battle the hearing sensitivities, worse when I have any kind of headache, but still headache or not certain sounds literally vibrate my head and ears inside. And from time to time I have that brain pressure and dizziness, and sometimes it's worse at night while I am sleeping. I can actually in my sleep feel the pressure in my head.

So still not 100% but boy oh boy is it nice to not be as sick as I was! Just go back and read this journal and you will see how much I have improved!

Glory to God!

August 5, 2015 (Wednesday)

So it has been 8 days since starting Plexus. Hard to tell if it's making any difference yet. I did experience some Montezuma's Revenge. Probably some detoxifying going on. Had some headaches but realized now that was from my menstrual starting a week early..ugh..had my typical one day of over excessive bleeding on Sunday. That wasn't fun. Had a horrible headache that morning. Wanted to stay home from church but Josh was preaching for the first time so I couldn't miss that.

So as of right now I don't feel any different. Still have the thrush stuff on my tongue even though I was on medication from my doctor for it. It's cleared some but not gone. Still have some dizziness, wooshy stuff in my brain every now and then. Lots of ringing in my ears. Sometimes very loud. Finger joint pain especially in my pointer fingers top knuckle.

My body aches and pains are up and down. I haven't had as much but that is normal as I usually go a week or two of bad pain then I can go a few weeks with hardly any pain. So I don't think the Plexus is making the difference there.

So I will keep at it and update again.


July 28, 2015 (Tuesday)

Well hello once again. Just wanted to give another update and also start journaling my symptoms as I started Plexus yesterday and I want to track the progress if any.

I am a huge skeptic with these companies that sell health products but after so many folks speaking to me and sharing testimonies of many folks with Lyme having great success, I thought a 90 day trial wouldn't hurt. It's right now better than going back on abx. I can tell my body was sick of abx. My gut feels so much better since stopping.

My symptoms are up and down. I have had joint pains, arthritis pains, neck stiffness and neck pain, ringing in the ears, dizziness, hearing sensitivity, low grade fever that comes and goes, overall body ache like I am coming down with a flu but of course it's not the flu and I never get the flu. My eye sight is worse, blurry. Extreme fatigue and wanting to sleep usually it hits after lunch time. Some heel pain, comes and goes. Lower back pain that comes and goes. Some tingling and stiffness has returned to my right arm.

Again these are all symptoms I had before abx but triple times worse. The abx did do wonders and I am so grateful for that. However the resurgence of these symptoms makes me fear that given time I may go back to how bad I was before abx. This is where Plexus comes in. Every symptom I just typed above are symptoms many folks with Lyme have battled and those who have Lyme and have been taking Plexus claim those symptoms are completely gone and they have their lives back.

So it's worth a try. So today is day one. I pray this helps.


July 9, 2015 (Thursday)

Wow it has been so long since I visited my blog. Sooooooo much has happened that I haven't taken the time to blog. Guess I was so tired of Lyme issues I just didn't feel like dwelling on it. I am beyond exhausted from this issue. And it seems like almost weekly I get emails or texts or messages from folks who are either diagnosed with Lyme or know of someone else with Lyme and they want advice or this blog address.
I am sorry I haven't kept up as I forget that many others will benefit from all I have been through in this Lyme journey.

The biggest news that I haven;t shared yet is since May 5th I have been abx free. I took myself off as I was so tired of the stomach issues and also the weight gain and financially it was so hard!

I have been doing okay however many symptoms are slowly returning. My finger joint pain in my index finger is back, my knee pain when going up the stairs is back. Still not as bad before abx but slowly returning nonetheless.

I'm still doing the magnetic therapy which seemed to help with some of the brain pressure. I haven't dealt with the facial numbness and drooping feeling and my brain pressure is so much better. Although I still deal with the hearing sensitivity. My primary care doctor said that will take a long time to go away. Not sure why.

Every evening I get that all too familiar body aches. It's pretty uncomfortable.

My goal is to try to raise enough funds to finally get a thorough Lyme panel done. I want to see if there is anything it will detect. My primary care doc said it probably won't show anything as I was on abx for so long but I want to try. Having only a clinical diagnosis and all my CD 57 blood work come out normal makes me wonder sometimes if I truly am battling Lyme! I know I shouldn't doubt like this but I can't help it.

ABx did make a HUGE HUGE difference and I don't want to ditch all that hard work, but it's too much of a financial strain. So I am just seeing what happens to me at this point.

April 22. 2015 (Wednesday)

Been awhile again since I have visited my journal here. Although much has happened I guess I am just tired of writing about it. So sick of being sick I suppose. And journaling it makes me dwell on it. However I have to remember I started this journal because as a Lymie it's important to document everything.

Currently I am battling the spine ache which creates a neck and headache. Worse when laying down. It always seems to start in my shoulder. In the past it has mostly been my right shoulder but on April 10th I woke up with what felt like a kink in my shoulder and neck on my left side. and since then it has been there and the past few days has got worse. I had my first magnetic therapy session also on April 10th which laid me up for 4 days. My headache was severe and my entire body was tingling, I was extremely fatigued, hard to stay awake. I was told that this would last only a few days so I listened to my body and allowed myself sleep and no cleaning the house etc. I was too sickly anyway. Sure enough by day 3 I was starting to feel better and day 4 I was almost back to normal. SO magnetic therapy did something.

I have my next session on Monday the 27th. I asked her to not do the sessions on Friday as it made me miss church and I don't want to do that.

My brain stuff is still there. Some days worse than others. Vision is blurry still, some days worse than others. The dizziness is still there. Still can't stand lights at Walmart and other fluorescent lighted areas. I do believe my iron is low again. I seem to have much more energy when I first get up in the morning but everyday without fail around lunch time I start feeling very sleepy.

I don't go in to see my LLMD until June 29th. Before I go in I will get my blood drawn to check my levels.

Kayla is doing ok. She has finished one course of treatment and now she is on another month but with different abx. She has developed her itchy rash on her face again since the change in abx. I can only imagine it's the angry bacteria manifesting itself. Other than that she seems to be handling the high doses just fine. Our PC said she intends on treating Kayla for at least 6 months for bartonella. And she is doing magnetic therapy as well.

I am so weary of abx that I want off of them. I am tempted to ask in June to stop all abx, and see how I do. And if I start feeling bad again I want to test this time as I feel still in the dark not knowing exactly which bug I have. I will save up the money to test with Igenex labs. A complete testing is around $550. But if I also want to test for co infections it is around $750. So we shall see.

Again in so many ways many symptoms I had for years has gone away, but new stuff has manifested since being treated, like the hearing sensitivity and a lot of the brain pressure and dizziness. I had periods of the brain weirdness before treatment but not this bad. But all that pain in my body is gone. The joint pains and numbness and paralyzed right arm. All that is entirely gone. For that I am truly grateful.


March 31, 2015 (Tuesday)

Well it's been a tough week here. March 20-21 we went skiing and that was the first time I had been skiing since starting Lyme treatment. I was exhausted and felt so out of shape but I thoroughly enjoyed being out there.

Sunday morning I wole up with a bad headache on my right side. It slowly started making my facial numbness come out and I knew..uh oh...something is going on.

Long story short, after a few days of feeling awful I called my LLMD and he said the skiing was too much for me and I needed to behave like a Lyme patient should. Over exerting oneself as a Lymie will make you CRASH. Well CRASH I I did. I honestly didnt think thats why I all of a sudden felt horrible.

He also upped my Minocycline back to 150mg. Since I weakened myself by skiing too much.

The other news I have is for the past 3 weeks I have experienced pain in my left breast. It's been getting worse and now it seems all the muscles surrounding my heart area are also sore and tender to touch. My Lymph nodes in my armpits are very tender as well. So I finally called my PC and she had me come in and after she examined me she made an immediate mammogram appt for tomorrow. She is suspecting shingles right now but she wants to make sure first.

Shingles???? Aiyaiyai!

My stomach is feeling awful..bloated and the gastritis hurts. Will this ever end?

Kayla has ups and downs. She didn't go skiing this Saturday with everyone else. She and I stayed home as her back was hurting. The night before her neck and shoulders were hurting. She has definitely had some herxing going on, migrating pains. Her head or brain feels weird at times too. But she's staying strong and keeping positive.

Will update later with more answers.

March 24, 2015 (Tuesday)

Well another few weeks since I have updated here. As usual I have my ups and downs. I have been having some facial paralysis sensations again, not horrible but it's there. Also the brain fog and dizzy lightheadedness is off and on. Not sure if I am maybe needing to change up my abx?
My face was twitching for a day and a half. That wasn't fun. It just would stop. Then it migrated to my leg! So not sure if that's Lyme related or what.
Have had a headache since Sunday which as always caused my hearing sensitivity level to go up.

Kayla is doing pretty well. She did develop bartonella rashes in her legs since starting treatment, but the rash on her face is disappearing. Yay!

I have been so fatigued and am wondering if my iron has dropped even more. Seems to hit me at around lunch time everyday, I just want to curl up and go to sleep.

But other than that I still keep going!

March 9, 2015 (Monday)

So lots has happened in the past few days so I must make sure I post here before I forget details.

Last Thursday on March 5th I had my appointment with my LLMD. The last visit with him was November and at that appointment he wanted me to try to find a primary care physician that would try to trace my anemia issue. He wanted to rule out other possibilities before he moved forward with his thoughts about it.

So after all the testings, everything to my primary care looked pretty good, normal. Just low hemoglobin but we already knew that.

So at this appointment my LLMD looked over all the results and he said, "You have your primary care interpretation now let me interpret this as your Lyme doctor." He then explained and pieced together like a puzzle what my bloodwork was showing and how everything points to the bartonella bacteria creating my anemia issue. He didn't doubt this but wanted to rule out everything first.

He also wanted to check my stomach and GI tract and sure enough as he suspected the bartonella is live and active in my gut. I about jumped out of the seat when he pressed a specific area. He said I had bartonella induced gastritis. And my constipation issues are all bartonella related and the water retention is most likely because my intestines are absorbing liquids because nothing is working properly. Apparently bartonella causes partial paralysis in the colon, which is why I struggle to have a normal bowel. And also why my tummy looks swollen a lot. As far as treatment plan, he is having me take a pill that will hopefully help my bowels to start functioning properly. Because of the problem here my body isn't absorbing the iron and thats why I am losing blood. He said the bloodwork clearly showed that I have a HIGH count of what he called "trucks" that are created to carry the iron, however my hemoglobin is low and so I am over producing these trucks yet they are empty. Again all bartonella related.

So that's where I am at right now, treating my GI and not going on iron as he said that would make things worse, which back in the summer the iron did make me go to the ER as I was so obstructed, well this is why. So until my GI starts working he wants me to stay clear away from iron tabs.

He also is very concerned about Kayla as I showed him her leg after the surgery and he has no doubt the yucky rash was indeed bartonella. We had already ruled out it was an allergic reaction as benadryl did nothing and the orthopedic doc applied the benzoin rub to another part of her leg to see if she would react and she had absolutely nothing happen so it was not the rub. He wants her to be treated for bartonell as he said we only treated her for Lyme and he believes Kayla definitely has bartonella from that tick bite. She has been showing many signs of neuropathy, insomnia and rashes on her face and always sleepy and anti social behavior, desiring to be in a dark room with no noise. All bartonella issues in the brain. So we are now trying to figure out what to do for Kayla. Prayers appreciated.

Here's some of the symptoms listed under the chronic bartonella patients that I have currently.

• Digestive:
• Gastritis 
• lower abdominal pain
• progressive anemia 
• lower abdominal pain
• GI track disorders
• weight gain
• 
  
• Ears:
• sound sensitivity
• 
  
• Heart - organs:
• unexplained bruises
• spider veins
• progressive anemia
• edema

Taken from Lyme-Symptoms website.

February 20, 2015 (Friday)

Wow, would you believe I have been so sick, today is my first day feeling some relief! After my last entry here on Feb 9th, I was on the TamiFlu which did seem to help get rid of the influenza A I was positive for. I had a few short days, like two days where I felt I was getting better, then I was hit again, it started as a cold in the back of my throat, I though certainly not again...well, yes again. I was so sick again. Headache, congestion, coughing, another flu! In one week back to back flu. This has never happened to me ever!

I thought I would just get better but yesterday I called my new primary care and she wanted me to come right in. Sure enough I was sick again yet now it was a sinus infection and close to developing pneumonia. No fun. Thankfully we still had a ton of amoxicillin from Kayla's Lyme treatment so she told me to start taking that and wow, today I feel so much better already. Am taking 2000mg a day. The sinus pressure and headache almost gone. I was able to get the girls to piano and meet my lovely friend and her sons for lunch. Felt good to be out and feel like a person again, I have been sick since Jan 31st! TOO LONG! And a good week of this time was couch ridden!

My primary care doctor said because of the Lyme my immune system is weak from all the fighting and the antibiotics do weaken your body so this flu just knocked me out. Any healthy normal person would have been able to conquer it as a normal flu, but not moi! However, I think I am on the mend finally. This flu has gone through the family, only Abraham and Jonathan haven't got it yet.

So all my lab work has come back normal, there is no information as to why my hemoglobin and iron levels are dropping. I go in to see my LLMD on March 9th, coming right up, so we shall see what he thinks. For now I am taking only 1 tablet of iron a day.

So that's an update in a nutshell! Will update when I have some information. Lyme wise, I still feel incredible! Of course the brain stuff is there off and on and the hearing sensitivity is there, somedays worse than others, sometimes it's bad one hour and the next hour I am fine. So weird this stuff. Well at least we know I have a brain! Or else I would be singing the scarecrow song! :D


February 9, 2015 (Monday)

Well the flu is definitely leaving and yet my brain herx is worsening. I have backed down to 150mg of Mino but I may have to back down even more. The constant 'humming' in my head and brain pressure and hearing sensitivity is about to drive me batty. I am so done with this stuff. I am ready to try that magnetic therapy. I hope I can get in soon. It's been a good year since my brain weirdness worsened and the hearing sensitivity began. Not sure why this is taking so long to get rid of it. Quite discouraging.

It's discouraging too because I know folks don't see it or understand just how bad I honestly feel. Lyme is truly the invisible disease as it's often called.

February 7, 2015 (Saturday)

Well I am finally able to get on this puter and update. I have been beyond sick and Thursday I had an appointment with my primary care doctor and because of how sick I looked to her and my rapid pulse and high blood pressure she did an influenza test which showed positive for Influenza A. She prescribed me TamiFlu which was $134.90!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

She also said I am worse because of herxing from the Minocycline so once again I have to back down on it.

She also has started me back on iron, only taking one tablet a day to make sure I don't keep dropping as my lab work shows I am clearly losing blood again however all my lab results were normal and good. Even my CD57 count was a 12 which is excellent and shows my immune system is doing well. Most folks battling Lyme, their CD57 is low. So I asked her what that means, and she said the antibiotics are doing their job and have killed so much of the Lyme and it's a good sign. SO that was good to hear.

She wants to get me to the magnetic therapy lady in VT so she is emailing her to try to expedite me in. Her goal is to get me abx free! I so want that!!

So it's been a rough week for me with herxing, bad cold, turned Influenza. My lungs were affected so I am short of breathe, hearing sensitivity is bad. And being bed ridden for the past 6 days has left me so weak and shaky. But I feel today that I am coming out of it at last.

I look forward to being out of this house and feeling normal!!


February 3, 2015 (Tuesday)

Wowzer, I guess I forgot about my daily journal here. Lots has happened so let me fill ya'll in.

Currently I am getting over a nasty flu bug. On Jan 31st, Saturday, I had one of my hay fever attacks. I thought it was because I increased to 200mg of Mino...can't believe it but I am on 200mg and no brain weirdness this time! But just as soon as that hay fever herx hit, the next day,, Sunday, I came down with the flu that's going around, headache, fever, congestion and such.

I'm getting better today but still breaking out in sweats and my lungs feel heavy and some pressure. Being asthmatic I always get weak lungs from these types of flus.

I did get in to this new primary care doctor and she is wonderful! She is 100% on board with my LLMD and my treatments. She said she wouldn't change a thing. She did some labs to make sure my iron was ok which it is. It is lower than August so I will have to keep a close eye on it.

She wants me to go to Vermont to a lady who does magnetic therapy. Am praying about it and considering it. She feels that this therapy is what I need to clear the toxins out of my brain.

So I am finally on a full bartonella protocol as I have been on 200mg for almost one week. This is the longest I have been able to do.

If I stay on this and start feeling better I can be antibiotic free after 6 months of no symptoms. Here's hoping!


January 14, 2015 (Wednesday)

Well my first journal entry of 2015. I didn't come on here much as my laptop is dying and it's hard to always be able to log in ehre as the page won't load. And typing on my Iphone is one of my least favorite things to do.

I did write a post on my blog that updates about my recent bloodwork results and the low hemoglobin again.

Am currently on day 4 of 100mg of Mino and doing okay so far. Have had some pains shooting in my joints and heart pain and chest pain, but I truly believe it's a herx and will pass.Some brain pressure but not as bad as before on 100mg. Maybe I am gonna make it this time to 200mg!!

Am waiting to hear from the doctor I had contacted to see if she will take me on as a patient. Was hoping to hear by now but maybe she's busy.

So I will update again when I have some news!

December 29, 2014 (Monday)

Well we had a very Merry Christmas and my herx had subsided for the holidays which is wonderful. Saturday I took one 50mg Mino and plan on taking one 50mg today and Wednesday and Friday, then 50mg the next entire week.

That should be slow enough for now. We shall see.

I had a very strange period this time around. Started lightly bleeding over a week ago and kept expecting to start any day and was so lightly bleeding I thought yippee maybe this is menopause and I am quitting having a period. Wishful thinking. I am on I think day 3 of heavy heavy bleeding,s o much I have laid down all day as I am weak and woozy.

Yesterday I had a headache and wasn't sure if it was bartonella or not and my body was tingling and numb feeling, that continued this morning, and I also seem to be retaining fluid. So I am thinking that this is menstrual related and not Lyme related and I very well could be going through menopause.

When you're a Lymie you can't help question everything different that happens physically. I don't like thinking everything is Lyme related either.


December 18, 2014 (Thursday)

Still waiting for the herx to subside completely before adding back the Mino. I don't have any headache or pain but still have great lightheaded and wooziness in my brain. Some pressure still too.

So other than this the rest of my body feels great! Oh the hearing sensitivity also has subsided much.

I was curious to see if others also with neuro Lyme suffered like me from Mino herxes. Here's a website I read. I guess I am not unusual!

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=036611;p=0






December 16, 2014 (Tuesday)

Well after that hay fever attack, I woke up Friday morning with no more allergies but a horrible headache. It was debilitating and I felt so sick to my stomach, this continued all weekend so much that Sunday I stayed home from church. I could tell this was a herx still from the Mino so Sunday I didn't take any Mino and by Monday morning the headache was subsiding and the pressure in my brain and numbness in my face was almost gone.

I don't know if I can ever safely take Mino without this horrible herx in my brain!

My LLMD told me to back off if I herx too bad but to gradually and very slowly add it back in, whether it's 3 a week so I will see how I am doing before I start back on it.

I was able to get up to 200mg of Mino a day back in July and August. So I know that I can do this but I have to keep doing this slowly.

I still don't know why it's only the Mino that does this to me.


December 11,2014 (Thursday)

Having my herxing hay fever attack today! UGH! This is so miserable. And of course nothing helps except a few of my oils help a tad, but my nose is on fire and itching inside and my eyes are watering up a storm and I look terrible!

But again, this is my body's way of trying to expel the bug that is dying off from the abx...so I will persevere!!


December 10, 2014 (Wednesday)

Well I didn't decrease my Mino, I decided to hang in here, but I am definitely not increasing today as was planned. My headache subsided yesterday finally but the pressure is my head is still there and making me very lightheaded and dizzy.

I don't have Plaquenil right now as when I went to Hannford to pick it up the price more than tripled! I was paying $20 a month and now it's $127 a month! So I called my LLMD to let him know I can't afford that he said I am not the only one in this predicament and he said we should all call the attorney generals office and complain. Another price gouging for sure because as more and more folks are being diagnosed with Lyme and Plaquenil is one of the most prescribed medication, they have to go and up it just like they did the Clarithromicin. All about money and not the health of those of us who suffer from this disease.

With this brain pressure I am having it is affecting my right hand and arm. Been a tad clumsy as it feels swollen and stiff.

December 7, 2014 (Sunday)

Well I am still herxing with the Mino, so much so that I am experiencing the nausea again which I did before..feels like morning sickness. So I am giving myself a break and definitely not increasing this coming week, I will only take one pill today and not the two. I have to let this herx calm down. When I did that the last time I was able to start back increasing slowly and was at 200mg of Mino. Right now I am only at 100mg. So for the next week I will back down again to 50mg until my stomach settles and my brain isn't so dizzy with the pressure.


December 6, 2014 (Saturday)

Well I am still experiencing the brain pressure and dizziness from the increase of Minocycline. My LLMD told me to take it slowly if I needed too, he said I can make that choice, so Jeff said if I am still herxing by next increase (Dec 10) not to increase to 150mg just yet. So we shall see.

Another thing I have noticed is when I am at the grocery store or Walmart I get very very dizzy, woozy and nauseous. I looked it up and sure enough many folks with neurological Lyme disease get this way from the fluorescent lights in these buildings. They suggested wearing sunglasses in the stores. So I will try that and see if that helps. I was so off balance at Walmart yesterday it was awful!

Yesterday morning when I woke up I had the weirdest sensation as my eyes were like flickering lights. I kept thinking there was a light flashing somewhere and I kept looking into the hallway and no lights, then I realized it was my eyes. I did read awhile ago that the bacteria in the brain affects eyes and flashing lights or streaks or eye floaters was common. I have had eye floaters before but never the flickering flashing lights sensation. Was very very odd.




December 3, 2014 (Wednesday)

Wow so it's been awhile again. It's been wonderful forgetting that I have this blog so why am I here this morning so bright and early???

HERXING! AGHHHHHHHHHHH!!!

Okay not as bad as in the past but I am on day 6 of increasing my Minocycline from one 50mg a day to now 2 50mg twice daily. My brain pressure and headache is back as well as extreme hearing sensitivity. But this time I know it's a herx and so instead of crying because I feel so bad I am rejoicing because herxing means the little buggies are being killed in my head and it's just needing to get flushed out so I can stop herxing here. The fact that I herx is always a good sign that my meds are doing exactly what they should be doing.

So I applied TONS of peppermint oil yesterday and took it easy. Will do the same today.

My next increase is Dec 10 where I will take 150mg a day of the Minocycline. On Christmas Day I will do the last increase to 200mg a day of Minocycline.

Other than the herxing my body feels incredible. My friend at church noticed that I have so much more energy and she is right! I have felt incredible, I wake up with no pain, no tremors, no stiff neck or joints, no more knee pain, my arm and hands are normal with no tingling or numbing or any pain!  Amazing after 6 years of suffering! God is so good to have lead us to a great doctor who diagnosed me correctly and has me on the correct treatment. The Bartonella truly has been harder to eradicate than the Lyme. And since it's in my brain it seems worse because it affects vision, hearing, overall head feelings. But I haven't struggled with slurring, forgetting sentences, whooshing, brain fog...I do have dizzy spells still but nothing like it used to be.


November 18, 2014 (Tuesday)

Still doing amazingly well. Hearing sensitivity is really the only ailment still.

I didn't take a gabapetin last night just to see how I slept and I think I slept fine, but I do think I was biting down hard and grinding my teeth. Funny how that happens when I don't take the medicine.

I asked my doctor why I do that only at night and he explained how the bacteria works in the brain. Interesting stuff for sure. It does cause an over active brain, as well as anxiety. I guess I am anxious at night. :)

November 13, 2014 (Thursday)

Yesterday was my appointment with my LLMD. He has restarted me on Minocycline. Let's hope I don't herx again! Took my first dose last night. Will increase every 2 weeks. Right now only on 50mg once a day. Not too bad yet.

Still feeling pretyt well with the exception of my hearing sensitivity. No fun.

November 6, 2014 (Thursday)

Wow another update so soon! Imagine that!

Really not much to report. haha....

I am still feeling pretty well. No symptoms except minor hearing sensitivity.

I definitely need the Gabapetin at night. I sleep so much better. I don't grind my teeth and I stay asleep. In my research and also information from my LLMD, Bartonella causes an over active brain. You get vivid dreams, nightmares, insomnia, restlessness. All these symptoms I have and Gabapetin really helps with that. The one I never got is the seizures. Thank goodness. Although I believe before treating Bartonella I was very close to that as I did have times where I felt my brain was out of control. Hard to describe but I knew something was desperately wrong.

Again I am so thankful for such a wise and well researched LLMD.

I'm currently taking Clarithromicin twice a day, Plaquenil twice a day, and Cefdinir twice a day. Pantaprozole for my stomach in the AM. Gabapetin either 1/4 tablet or 1/2 tablet depending on my neuropathy issues.

November 4, 2014 (Tuesday)

Okay so really been awhile again! My granddaughter has been born, on October 25th at 10:38pm. I really haven't been home and not had wifi while at my daughters house. So hence no updates here...

The last update I mentioned I had such burning pain in my shoulders. Well.....I am thinking I had shingles as after the pain subsided I developed this rash right where all that pain was, it scabbed over eventually and now it is gone. I didn't think you could catch shingles from chicken pox, always thought it was the other way around but maybe because Seth had chicken pox somehow it triggered shingles? The last time I had shingles I was 21 years old so it's been a loooooooooooooooooooooooooooooooooong time!

That fluish feeling is definitely gone so it must have been the side effect my LLMD was suspecting.

I am feeling pretty well. Mild hearing sensitivity still. Also I noticed that I don't sleep well at night. Well duh, ok that's been going on for some time, however the Gabapetin, the neuropathy medicine, seems to eliminate that. When I don't take it I wake up constantly, feel restless, in pain and I dream too much and I grind my teeth really bad I think as I wake up with sore TMJ area and also I have lines inside my cheek as if I am either sucking in my cheeks in my sleep or the grinding has me also grinding the sides of my cheek. But Gabapetin seems to relieve all of that and I do sleep better. My LLMD did say Bartonella is notorious for all this brain activity. I will talk to him more on the 12th when I have my next appointment with him.

So that's a update in a nutshell. I still am amazed at how far I have come and my right arm and hand is normal feeling! 5 years of agony and it's gone after one year of antibiotics. SO good to have answers.


October 22, 2014 (Wednesday)

Okayyyyyyy.......so this is the longest I have gone without an update. Things have been hectic here and my laptop not working well played a huge part.

I am doing ok. Again so many Lyme symptoms are gone, I only deal now with mild hearing sensitivity occasionally. No more brain weirdness or buzzing zapping stuff. My right arm is completely normal...amazing after at least 5 years of it not being normal and thinking that it would only get worse! Thank you antibiotics!

A few weeks ago I called my LLMD because I just couldn't shake the flu like, body aching feeling ever since I started the new bartonella protocol of Cipromax and Cefdinir. He was concerned that this was more a side affect of the Cipro and had me go off immediately. After going off of it I caught the nastoest head cold, congestion flu thing, I had body aches and fever and wheezing, you name it...and it's still lingering! So I can't tell if the Cipro being gone has helped at all!

I have had a bad headache ever since Monday morning, stemming from my shoulders up my neck. Monday was so bad, yesterday was better but my shoulders were almost burning with pain, now today headache is back again and my shoulders still hurt. So not sure why this is happening.

Oh I am back on Clarithromicin, was supposed to start it the 28th, but when I got so sick it felt like bronchitis so I started it earlier to kill any bacteria from what felt like bronchitis or pneumonia.

So that's it really, still waiting for my granddaughter to be born, she's officially 12 days over due. But at least Seth is over the chicken pox!

September 30, 2014 (Tuesday)

Well once again it's been awhile. Although I am doing pretty well, I have daily body aches and much drowsiness and lack of energy. I also feel low grade feverish just about everyday.

Some Lyme stuff has come back since starting on this new abx protocol. I will persevere until Oct 30th when my next appt with my LLMD will be.

I'm still ecstatic that that red itchy bump on my scalp is finally gone!

I still have slight hearing sensitivity and each day is different. Mornings tend to be the more sensitive time but it can happen whenever it wants.

My right eye is also very blurry. More than the norm.

I have a sneaky feeling that this combo of abx is not killing it as well as the rifampin and minocycline combo was.


September 24, 2014 (Wednesday)

Wow, I feel awful today. Had such a hard night of sleep. I couldn't sleep is more like it. I was in pain, aching body, flu like feeling. Shoulder was shooting weird pains. I kept tossing and turning. I woke up so many times. Now it's almost noon and I feel so nauseous and body still feels like a flu and I feel feverish. Allergies aren't helping either. My eyes are just burning from being so tired.

Oh I want this to end. I know I should be taking the Gabapetin everyday like my doctor wants me too but if I do that I truly will be an invalid. I am not able to function if I even take only a half of a pill.

Maybe this new protocol isn't working for me? I was feeling better with the Minocycline and Rifampin combo even though I herx with Mino, but at least I was able to adjust and the herx stopped eventually.

I just took 3 ibuprofens and hoping it helps me. I have much to do today.


September 23, 2014 (Tuesday)

So it's been a few days again. My laptop lost it's network card so it's harder to update here.

Although much of the facial numbness and Bells palsy symptoms are gone, I still have hearing sensitivity issues. Not as bad as before abx but not gone yet..also yesterday my left ear felt numb and blocked and almost as if I was going deaf. Ringing in my ears too. Was very strange as this was a first time. So obviously the bacteria is still having a hayday in my brain.

Sleep at night has been difficult too with an over active brain. I seem to dream too much and wake up in between dreams. I never feel rested in the mornings.

When I do take the gabapetin pill I generally sleep better at night as it does calm my brain down however I am no good the rest of the waking day as I am so groggy from the pill. Even with cutting the pill in half. So on days when I don't have anywhere to go I take the pill just so I can sleep at night.

I've also had pain in my chest still, some days worse than others. And a constant cough. Feels like I have a chest cold coming on, but it never fully comes on. Just lingering in my chest and making me want to cough.

So these are the symptoms for now. Still feeling pretty well as far as the painful Lyme body aches and joint pains etc. Just have to fight this stuff in my brain now.

September 17, 2014 (Wednesday)

Well still doing pretty well with this new protocol of Cipro and Cefedinair and Plaquenil.

For a few months I had this really awful raised red bump on my scalp right above my ear on my right side. It itched like crazy and I was nervous that maybe Abrahams head fungus somehow got me even though he's been fungus free for 2 years. I have never had anything like it but it was uncomfortable and so itchy and sore. Yet since starting the new abx, guess what? It's GONE! After months of it itching and bothering me! So why didn't I ever consider this was the bartonella scalp rash that is often mentioned? Duh.


September 13, 2014 (Saturday)

Still have a bad headache and now it's migrated down to my upper shoulders and back of the neck. Ibuprofen doesn't relieve it and oils don't either. Ugh....

Had a really loud ringing in my right ear this morning too. Was almost deafening. Still feeling that all too familiar flu like achiness. Also have some agitation feeling which could be a side effect of the antibiotics.

Have to drive over an hour to Auburn today for a funeral.


September 11, 2014 (Thursday)

So not sure if weather really does play a part in how one feels but this morning I woke up with my chest itching like crazy, red rash there now. And also feel a tad sickly feeling, kind of achy, slight headache and fluish feeling. Not bad but enough to know it's there.  Hearing sensitivity this morning too.

I haven't done anything different, didn't do any new oils or meds so guess the bug is just acting up.

We are on way to the Hiram Back to School days event. Hoping the kids will enjoy themselves.

September 10,2014 (Wednesday)

So it really has been 10 days since my last journal....wow...well been a few weeks since starting back on abx and it has made a ton of difference. No more bells palsy weirdness and my brain weirdness is just about gone..very slight hearing sensitivity. So it's killing bugs in my brain. I think I am on the full therapy now taking the abx one pill each twice daily. So that's Cipro, Cefedinair and Plaquenil. I'll have to check to make sure that's all the increasing I do.

Kayla just passed out for a few seconds. Scared her really badly. Not sure why, she thinks it may be because Abraham hurt her leg but that seems weird. She's all shaky right now.

My period came again 24 days in between. I am on day 3 or 4 today and very heavy. Not liking this at all.

Other than that Lyme symptoms are still gone, some aching still at night but again nothing bad. Right arm is back to feeling pretty normal.

Guess this goes to show abx work and I need to be on them.

September 1, 2014 (Monday)

Been a few days since I updated here. I did write a blog post for the new treatment plan.

I've been doing better since starting back on abx....which shows most definitely I am battling bacteria still.  My brain weirdness is subsiding, I don't have Bells Palsy feelings right now. Hearing sensitivity is still here but not as bad. No more tingling in my right arm.

I also was given a neuropathy medication, Gabapetin, I took one dose and not only was I sooooooooooooo groggy but I have a headache now which I haven't had any headaches for a long time. So I don't think I am going to take it again unless my brain weirdness comes back full force.

So new treatment and a long time to be on it and this time I am not giving up even if I feel better. I have to get it through my head that this is a hard bacteria to get rid of.


August 25, 2914 (Monday)

So still having bad brain pressure and dizziness and numb cheek and watery eye and right arm weakness and tingly and hearing sensitivity. Pain behind my ear. All signs of Bells Palsy.

I called my LLMD and he wants me back on the full Lyme protocol again and off Mino and Rifampin and I go in tomorrow to see him.  I will update what he says.

Unfortunately my heart is starting to do weird things, palpitations, pain shoots every now and then, feel like I am low on breathe. Sore and tender when I press around my heart and rib area around my heart.

So will update tomorrow what my LLMD says.


August 21, 2014 (Thursday)

So again trying to deal with this obvious herxing. I didn't take a Minocycline or Rifampin today and it's now 7:30pm and I am feeling a little relief. My eyes are exhausted from all this pressure and numbness etc.  Yesterday I felt horrible, so much pressure and my right side of my face drooping and numb. I won't take any mino or rifampin tomorrow either. Will start back up on Saturday. I am so glad I have the freedom from my LLMD to do what I feel is necessary, and he said backing off until the herx settles down is perfectly fine. I have felt feverish on and off too, but no fever on a thermometer. Neck a tad sore, lymph node areas.

Kayla had her appt today and from today on she is boot free! Yippeee! So happy that she can wear normal shoes again as her boot elevated her up so much I am afraid her hips are bad and probably out of whack.

August 19, 2014 (Tuesday)

Awful day again with dizziness, brain and head pressure. Slurry speech and slow speech, hearing sensitivity, face numb, feels like I am smiling crooked. Very weak and fatigued feeling too. Took ibuprofen and it seems to help.  Also some discomfort in my lymph nodes in my neck. Numbness and weirdness goes from right to left, most of the time in my right eye area but it also shifts it seems. So strange. My hearing is so sensitive it's driving me batty.


August 18, 2014 (Monday)

Awful horrible brain stuff and cheek numbness and very very dizzy and light headed. Right eye watering constantly. No pain though. But my right arm is definitely being affected, much tingling and weakness. Hearing sensitivity is bad. Sudden noises is what bothers me. People sneezing, dishes banging in the sink. Silverware drawer ugh.

Yesterday at church the grange hall where we meet is so loud during lunch time that I felt like my head was in overload and was going to pop! It was agonizing. As soon as we went outside that subsided immensely.

Not sure how long this will last. We shall see.


August 15, 2014 (Friday)

My brain weirdness has increased and some weird pressure feeling in my temple area. My right side is the worse even in my face and cheek. My right eye seems to water more too. Not sure what this is.  I know my LLMD seems to believe it's bartonella in my CNS. I dunno..I dunno anything anymore. I feel somewhat in the dark.

My period started again, 21 days in between I believe.

Maybe the dizziness increase etc is herxing. I just dunno and I wish I knew as I am weary of the unknowns...haha...


August 11, 2014 (Monday)

So it's been awhile....last week I was finally able to contact my LLMD and as I wrote in my blog post I started back on Minocycline. Eventually will start back on Rifampin. It's very obvious now I am still battling bacteria and it's most likely bartonella still. My LLMD is 100% positive it's bart.

I took two 100mg doses and started herxing so because of the conference I took 3 days off and yesterday started back on 100mg a day. So far so good, my right hand and arm is weak again and my hearing sensitivity if horrendous. Today has been bad.

I feel achy all over my body like I am catching a flu, but I know it's not a flu. All too familiar this stuff.

So for now the plan is to keep at least the mino in me to kill the bacteria in my brain and it's just going to take longer to fight this.


August 4, 2014 (Monday)

So still doing pretty well. I have been having brain weirdness and mt right hand and arm has had that tingling numbing sensations. My neck stiffness is off and on again. I wish I knew if this is still Lyme or something else. I want so much to take the test from Igenex Labs but it's $750!!

But no joint pain still and the tummy issue seems to be resolving itself. Yay!

July 31, 2014 (Thursday)

SO happy to report that yesterday Elizabeth's midwife checked my iron level and it was a whopping HIGH 13.5! Whoo hoo! So the two months of iron supplements did it's job and I think killing this bartonella with months of rifampin then 3 rounds of minocycline did the job too!

HAPPY DANCE!  I am feeling so well as far as Lyme symptoms. I still have brain dizziness feeling at times. But absolutely no joint pain! No headaches! No neck pain..I think I will write that everytime I update here.

My stomach situation is still mending. My tummy size has gone down alot and I am still experiencing stomach pains. Gassiness and bloated feeling. But it has gotten better. Just waiting for it to all go away for good.

Can I really be cured of Lyme disease and bartonella in 10 months? I fear I am in remission and will relapse as I haven't met folks who have been healed from this disease. I did so well living with this disease for 6 years of my life before treatment. So maybe I have a strong immune system? I remember my LLMD saying he was impressed I did deal with it so well and he felt confident I would cure but it would take time. 10 months of antibiotics was a long time for sure.

I will keep updating but my updates seem to be few right now as I feel so well I am doing so much more. When I was so sickly I laid on the couch alot or in bed so updating was easy to do daily.

I started taking a fiber supplement called Heathers Tummy Fiber today. Hoping this will help me become regular and normal.

July 29, 2014 (Tuesday)

Well the bowels have been moooooooooving along slowly and the gas bubble pain is lower and lower. No more under my ribs so this is great news!
I did stop taking the iron so I know it is important to get my iron tested at least. Wish i could do it myself somehow.

Last night I was experiencing brain woooshing again, at one point I had a very severe whoosh that made me feel faint for a split second. I am concerned that this is still Lyme or Bartonella. This morning I feel that familiar flu like feeling in my body. A tad queasy and head feels borderline warm and achy. I'm not sure if this is from clearing out my intestines or if it's Lyme. Again I am not jumping to anything and throwing myself back on abx. I have to wait longer and see if I get the joint pains etc. It very well could be candida die offs which will take weeks to clear out of my system.

So one day at a time. I still haven't called my LLMD..naughty naughty....

July 26, 2014 (Saturday)

Well interesting few days for me. Thursday afternoon I started having severe sharp pain under my left rib. Thought maybe a kidney stone. Endured it all day and night, Friday morning on my way to the abortion clinic I stopped at Mercy Express and xrays revealed complete bowel obstruction, and the left side showing a huge gas bubble that is obviously trapped as it cant' go anywhere. So I took Milk of Magnesium which made me have diarrhea for a few hours. Pain is still there but my once bloated belly looks smaller! So perhaps all this time my bloated belly wasn't candida but months of bowels piling up. I am assuming its because of the iron tabs I started taking in May.

AS of right now I still have pain under my left rib, and crampy gassy, probably from the milk of magnesia. Hoping to keep mooooooooooooooooving these bowels.

Today is the girls birthday party, I have much to do and hoping to feel better. No Lyme symptoms whatsoever!!!!! I feel incredible apart from this bowel pain.

July 22, 2014 (Tuesday)

Well so far so good still, no pain so thats always good. My brain weirdness is still off and on. My period started off slightly different than normal. Two days of barely bleeding then Monday it started flowing more. That has never happened to me before. So either the changes have affected it or maybe I am starting menopause? Who knows!

I woke up with a headache this morning, probably mostly likely from my period. So I applied peppermint, feels so good. I love my peppermint. Simply can't live without it!

I did start adding back some carbs, not tons and definitely making the commitment to not eat sugar at all. Going to be slow on the carbs for sure. Not over do it.

So not much to report. Still doing pretty well!

July 19, 2014 (Saturday)

So my brain pressure and weirdness has continued. Off and on at different levels. I can go from feeling normal then that whoosh whoosh sensation, buzzing, zapping. My vision is so bad and my speech can be slow and I stutter hen I try to talk. The brain pressure feeling heightens as I talk. Not sure if talking causes more pressure in my brain? Or maybe it's because talking makes my brain work? Whatever it may be, there's no doubt my familiar brain weirdness is back. Or it might be candida die off! The symptoms are the same so who knows! Time will tell. I'm in no pain so that's good. Although my hearing sensitivity has also returned off and on. Depends on the level of weirdness in my brain. My (.) is starting as well which is 21 days since last one. Early, so maybe some of my discomfort is that?

But regardless I am still abx free, I started taking Gymnesa Leaf and Kyolic garlic as someone told me they killed candida with these two herbs and they never did the strict diet stuff and she did just fine. So it was worth grabbing them to try, both bottles combined was $16. The special candida diet costs more really as I can't eat so many normal foods.

Next week my LLMD is back in the office and I will have to call him to let him I had to stop abx due to financial stress. No matter how I try calculating the budget there's just no way I can afford to get my monthly prescriptions without it affecting all our new payment arrangements with the various billing offices from Kayla's surgery.

Asking the Lord for wisdom. This is such a difficult place to be.

July 16, 2014 (Wednesday)

So today I as experiencing my restless leg stuff, felt agitated some. Feel better now. I also had a HUGE brain fog moment where I was going to turn the light over my stove on and I honestly couldn't remember how at all. I kept staring at the buttons and I just couldn't remember how to turn that light on. Was a very frustrating feeling. I hope it's not Lyme.

Other than that I still am in no pain and am doing well throughout the day. Still eating the candida diet. No sugars or carbs have been in my tummy for a week now. I miss my rice!!!!

July 15, 2014 (Tuesday)

Still doing wonderful! I do feel a tad stomach shrinkage. Not as much as I would like! lol! My LLMD is on vacation till the 22nd so whew....I have an excuse.

I ordered some supplements from Swansons website that someone told me kills candida, she used these and didn't do any strict diet. So it's worth trying. Hope to get those soon. Kyolic Garlic and Gymnema Sylvestre Leaf. Here's what I found out about the Gymnema.

So here's hoping it works! 

July 14, 2014 (Monday)

Again so far so good without the medications and eating the candida diet. I haven't lost any weight yet which is a huge bummie! haha...

I still haven't spoken to my LLMD which I should do today. I'm nervous to hear what he will say.  Will update here when I speak to him.


July 11, 2014 (Friday)

So far so good. No weirdness from stopping abx cold turkey. Trying to eat the candida diet is hard so far. Don't like it. Still trying to figure it out. Mainly cutting out all sugar and carbs for now. I had taco salad for breakfast with greek yogurt on top, lunch was at McDonalds, I ate their salad, chicken bacon ranch but without the ranch and used the Newmans Balsamic vinegar with grilled chicken. Then dinner I ate something Pennie showed me, egg roll in a bowl, err, skillet I guess. Was yummy.

July 10, 2014 (Thursday)

So today is the day I have made the hard decision to stop all abx. Cold turkey, I am not even slowly weaning. I have taken only an iron pill this morning. I decided to do this so that I would have the medication to fall back on if I start developing symptoms. This is kind of scary but I feel I need to do this mostly because of the candida overgrowth I believe I have. So for now I will focus on changing my diet, first thing to eliminate is sugar and most carbs like my beloved rice...sniff sniff...no coffeeeeeeeeee! How will I survive!!!!!!!!! Help!

July 9, 2014 (Wednesday)

So I really am doing very well. Much more energy and no Lyme discomforts. I do ache but I am really really believing it's candida overgrowth issues at this point.
I did have some hearing sensitivity this morning, haven't had that in awhile so I know there's still some bacteria lingering and dieing off.

Jeff wants me to call my LLMD to let him know that once this round of abx is gone I plan on not re filling at this point. But to ask him if it's okay to take a break and see how I do. It's been a month today since my last flare up. So here's hoping he will be ok with me going off and taking a break and see how I do. I really want to lose some weight too and I can't as long as I am on these abx.

My right hand and leg are still swelling up more than the left, not sure why. I am thinking the heat and humidity have much to do with it but why only my right side?

Again I am not willing to see Lyme behind every bush.

Still taking 150mg of the mino. Can't believe still how different it can be! Just shows that the bacteria was there and it's a battle but I am winning the battle!

July 6, 2014 (Sunday)

Shabbat Shalom! Happy Lords Day!

Still feeling pretty normal. I think I am catching a sinus cold though but other than that I still have no Lyme issues...I think! Not sure if my right hand and leg swelling up is Lyme related or something else. My left side was normal and in the past Lyme always attacked my right side. I had to remove my rings as it was hurting my finger so much. So maybe that's the Lyme still?

Still on the 150mg of Mino and no herxing like before!!! Whoo Hoo!

As far as medicines go I am still taking on a daily basis 8 amox capsules, 2 Plaquenil, 2 Rifampin, 150mg Mino, 2 iron tabs, 1 pantoprozole at breakfast, probiotics at night.

Was sad to find out today that one of Seth's nephews, 2 yr old Gabe, has Lyme! He got a high fever one day and was complaining of his ear hurting, and wala, a huge bullseye rash! So he's on 30 days of abx which I cautioned Kayla, his mommy, to see if they can give it to him longer as we know all too well 30 days doesn't kill Lyme!

More and more stories of people taking nymph ticks off themselves or finding bullseye rashes..it's everywhere!!!

July 4, 2014 (Friday)

Been a busy week for me helping my friends with their house. I am amazed at how wonderful I have felt, no Lyme symptoms at all!

Today I am having an allergy attack again though. Haven't had one of those for a bit. Hate it. Feels horrible.

So not much to journal again as I feel great! Still taking 150mg of Mino and no nausea or head weirdness. Yippeee!

June 30, 2014 (Monday)

Still doing very well, no joint pains. I did wake up with a headache this morning and because I knew I was going to help the Hillmans clean their Lebanon house I took Excedrin and it helped.

So still on 150mg of Minocycline and doing amazing!! Still hard to believe I herxed so bad on Mino before, twice even, and this time nothing! Not even that nausea! Yippeeeeeeee! I am killing buggies!



June 27, 2014 (Friday)

Well besides my (.) starting last night and still having some of that tension should/neck headache, I feel great!

I did refill my Rifampin, I think I should do the entire one year treatment and see how I feel by September.

Sooooooooooooo...not much to update except I am almost feeling normal again!! It's been so long!!!!!!!!!!

I know many can go into remission so hopefully that's not what this is as I don't want remission, I want CURED!!
 June 26, 2014 (Thursday)

Well I still am having that annoying shoulder, stiff neck, tension type headache. Hurt more while laying down but it didn't affect me too much last night. My shoulder muscles are definitely sore. Sitting right now with a cushion behind me on my couch. Makes it feel better. Haven't had this discomfort in a long time. I didn't miss it and want it to hurry and go away.

Other than that, still hardly any joint pains or head weirdness. Just still have some middle finger upper joint tenderness. This is the longest I have been on Minocycline and not had a bad herx reaction to the point of giving up on it. I am going to refill my Rifampin tomorrow. Just feel it's too soon to stop everything as I only just started feeling better, don't want to allow for any regrowth of bacteria. I also found out that rifampin is best ion an empty stomach and not taken with other meds...I haven't done that this whole time.

Kayla's stomach is better however she is complaining of her right knee hurting. I attribute it too her having to use the right leg so much now as her left leg is not usuable at the moment. Will keep a close eye though. Her fever seemed to disappear by late afternoon. Must be a viral thingie. I am hoping. Treating her with oils.


June 25, 2014 (Wednesday)

Wow, horrible headache that started yesterday afternoon. After a wonderful morning. And no, it's not from me walking two miles on the treadmill. This tension headache has been hanging onto me for the past few days and I think it just finally got me. The pain is more muscular in my shoulder and goes up my head, and whatever muscle it is it created such dizziness if I laid down. I tossed and turned all night and at 2:30am I finally got up and took Ibuprofen as I didn't have the energy to apply oils and wait. I wanted instant relief now, but the ibuprofen did nothing. Now typically ibuprofen would take away my headaches so this is telling me this pain is perhaps a herx. It's been building up for quite some time and now WHAMO! ugh...oh well. I still don't have any joint pains and junk like that. So that's good. Although I prefer those over headaches. Headaches debilitate me and I have a hard time doing anything with them.

One thing I was remembering when reading my journal was the last 2 times I tried Mino, I was nauseous..this time, round 3 on Mino and at 150mg right now, I have had no nausea at all! Incredible how different round 3 has been.  This is the longest I have been able to stay on the Mino and if this tension headache is the only herxing I will do thats not too bad. I promised myself not to give up this time and I am not.

Kayla developed a fever yesterday again. Kiara did the same thing where she was fine for almost 2 weeks and got the fever again, now Kayla, so this must be a viral thing? I hope. Of course with Kayla everything freaks me out right now. We also took her off abx and so she's been 3 days no abx, but I doubt thats why.I haven't called our doc yet to let him know we took her off. I probably should.

Very humid today and making me sneeze alot. Bad air quality. I can smell it. lol.

I am hoping as the day progresses this headache and dizziness will go away. I am happy to report that walking two miles didn't make my bum muscles sore as I thought it would. I have some soreness in my inner thighs but nothing bad at all! Yahoo...maybe I can do it again after this headache goes away and start losing some of this 20 pounds I have gained since starting abx. I feel like a bloated puffer fish! :)

June 24, 2014 (Tuesday)

Wow, another great day! I even got on the treadmill and walked/lightly jogged 2 miles!!! WOWZER!

Still have that tension neck/mild headache. But I don't care! Treating it with peppermint oils and after I exercised today I had to put on Valor as my lower back did ache but Valor took that pain right out. This stuff is amazing!!!!

No joint pains! No herx from the Minocycline!

I went back in my journal to see when I started the Rifampin and it was late March. so less than 3 months I have been on it. Thinking I should get it refilled one last time to make sure we knock out bartonella. The Bartonella treatment is working as it does seem like that bacteria was what was making me so sick from Feb-April. Since treatment I have improved so much, even those nasty red blotches are gone. I also starting using essential oils in April and that seems to also have played a huge part in my symptoms getting better. Since April I have rubbed Thieves oil on my feet every night. That must also be killing off the Bartonella and Lyme.

So it's amazing how well I am doing, I also wonder how much of it has to do with the warmer weather.

June 23, 2014 (Monday)

So am feeling almost normal, not much pain, no head pressure although I have had some neck stiffness and aching but nothing horrible.  Still on 150mg of Mino. This Saturday I run out of Rifampin, and I don't think I will get it refilled. I've been on it for 3 months so we shall see how I do.

June 21, 2014 (Saturday)

So doing pretty good although since late yesterday I have had pain in my neck and shoulders, like my tension headaches I used to get. Not sure why as I haven't had this pain is so many months. It's not debilitating or anything just annoying. But perhaps the brain inflammation I felt 2 days ago has just migrated down since it''s not in my brain yesterday and today.

Did yard work today again.

So not much to report.

Oh we took Kayla off all abx as her stomach is not handling it well and we don't want to destroy her gut as that will only weaken her immune system. So she will be taking a lot of probiotics to heal her gut and we shall see how she does Lyme wise.

Kiara got sick again yesterday with her sore throat and fever. She does have a big white spot on her throat, but today she's feeling ok. Suspecting strep. I will call her pediatrician on Monday and take her in, or take her into the walk in clinic. Whichever is cheapest. I have a feeling the pediatrician is more pricey.


June 19, 2014

Okay so maybe 150mg is going to start some herxing. I have brain pressure today as it seems like the bacteria is not happy and it's causing the typical brain inflammation feeling. So I am constantly biting down as it helps clear the air pressure feeling in my ears from this inflammation. So weird.

BUT I AM NOT GIVING UP THIS TIME! Gonna kill this stupid bug once and for all! I am so tired of this and I want off abx and I want to be my active self again. I want to jog again and climb mountains and hike and run races again!

June 18, 2014

Okay so I am not updating as regularly anymore because I am feeling almost normal and I am always busy cleaning and being outside etc.

I have been on 100mg a day of mino and having absolutely no reactions! Amazing! My doc said that I probably will do pretty good on a lower dose as we have killed off much of the bartonella with rifampin so I shouldn't herx too bad on a lower dosage. He was right!

I am going to increase too 200mg a day, but again doing it slowly. I just realized today is one week since my last increase so that means today I take 150mg of Mino. Oh boy here we go!

So no joint pains, no head weirdness, no headaches, nothing!!!!

June 16, 2014

Wow, I haven't updated lately. I have been doing pretty good. My body hurts from overworking myself in the yard on Saturday but at least it's normal muscle pain from being out of shape and nothing Lyme related!

I have to mention that since starting iron pills my metallic taste in my mouth and the body itchiness has gone away. Maybe I already did mention that? lol..oh well, it's worth noting again as for so long I had those symptoms and to think it was because of such low iron all this time.

Kayla's cast was removed today and she got to see her 3 incisions. She was freaked out to say the least. She's now on a fracture boot and no weight bearing for another month. July 14th at 2pm we have another appt to see if she is able to to start some weight bearing then. What a long road for this poor girl!
She also has had a fever and sore throat since yesterday. Probably caught whatever Kiara had on Tuesday.

My joints etc feel pretty good today. No head weirdness. Doing good on the 100mg of Mino so far!

So not too much to report. Maybe we have killed off much of the bartonella!


June 13, 2014

Happy birthday to my hubby!

Been doing pretty well today. Very sluggish though and finding it hard to get work done today. Have everyone coming over to celebrate the birthday so I keep trying to get motivated here.

Drenching rain today but it's not bothering my joints like I thought rainy days did.

Have a slight tension headache since yesterday. It does feel more like a tension headache.

So not much to journal really as far as Lyme is concerned. I have been looking into natural remedies to do after abx treatment.


June 12, 2014

Had a much better day yesterday. None of that flare up joint pain was there. Was able to get much done around the house.

This morning I am having some wheeziness and my heart feels a tad funny. Also it's tender to touch my chest bones where my heart is. Not sure what this is. Yesterday evening I also noticed that weird fluttering feeling in my heart..slight palpitation. I am wondering if this is from the abx? I just don't want to think everything could be Lyme but I know my doc would say it's Lyme. I will have to ask my Lyme group their thoughts as there are some veteran Lymies in this group.
Have some finger joint tenderness still, not terrible but it's disappointing to have it as it had gone away for such a long time. Oh and my eyesight was horrible yesterday! Mostly my right eye was struggling.

Kayla is doing remarkably well. So glad for that.

Will update later. So far so good on the increase, no head or brain weirdness yet.

June 11, 2014

Whoops forgot to journal yesterday. Wanted to make sure I journaled how Monday. June 9th I was miserable. By dinner time I was in so much pain I could barely get up off the couch, my knees were hurting so terribly as well as my finger joints, I just felt an overwhelming burning in my body. I even fell asleep on the couch after dinner, it was almost an abnormal falling asleep as I literally passed out and I remember nothing, but I was asleep on the couch for an hour Jeff said.

Kiara was sick with a fever and sore throat and headache on Tuesday. Using oils galore.
Then yesterday besides a few aches and pains, everything subsided and I was fine last night. So I have concluded that must have been a flare up again. Sigh...when will this end!  I am so grateful that the flare ups have been my joints etc and not headaches anymore. I can handle this better than those excruciating pressure headaches. The last bad headache I had was in TX but as I journaled about that I overcame it quickly with essential oils and a nap, which has never happened before.

Every morning I wake up though my body is hurting, my heels are so sore, but that subsides as the day goes on. Still evenings are harder, but nothing like Monday!

I am increasing the Mino today. Will be taking two 50mg tabs daily now.

June 9, 2014

Not too much to journal today.  I have been having my two middle finger upper joints hurt alot, this was happening before Lyme treatment and was one of the first things to disappear and now it's back. Very disappointing. Not sure why many of my former Lyme symptoms are returning.

I canceled my June OBGYN appointment as we won't be able to handle the bills that are going to start pouring in from Kayla's surgery. I got her Xray and CAT bill today and those two totaled $417. I paid $60 on it today as that was for the regular Xray.

I honestly think my iron is going up as I can feel the difference already. Some symptoms that were probably low iron that I was experiencing and didn't realize it was low iron were metallic taste in my mouth, causing me to always feel like I wanted to swallow my tongue..I know weird, but this was a major symptom and now it's gone after all these months. Also the itching body is gone and I read that could be from low iron, so all that itchy might not have been Lyme related at all! Restless legs, that's mostly gone and I read that low iron causes that too. So I believe the iron supplements are doing it's job so I canceled the OBGYN appt as I don't think that will accomplish anything but give me a clear bill of health.

I have increased the Mino to daily 50mg tablet. So far so good. Next week I will take 2 tabs a day, making it 100mg daily.

Kayla is doing very well, her toes don't feel quite as swollen now. Her post op appt is Monday June 16th at 2:30. Hope to get some direction as to how long before she can walk again. She did cry last night that she wants to be normal again and wants to remember what it feels like to walk normal again. Poor thing.

June 8, 2014

So haven't updated in awhile. Life has been too hectic. We had family camp but mostly hectic because of Kayla's surgery. It was a whirlwind of days, never knowing what was happening.
She broke her ankle on Memorial Day, May 26th, Tuesday I took her in the morning to the walk in clinic and they did an xray and said it was a sprain. That evening they called back as the radiologist looked at it and said it was broke so Wednesday morning I had to take her back for them to put a temporary half cast on and make an appointment with the orthopedic doc.

The orthopedic doc got a quick look at her x ray and confirmed it was broke and made the appointment for Monday June 2nd to come in for her permanent case. They wanted the swelling to go down first before the cast it.

So Monday morning we left family camp early to get to our 12 appt. Originally our appt was for 2pm but the doctor had to leave early so we had to get there earlier. Missed the morning sessions of the message at family camp. :(

The orthopedic doctor came in and showed us her x ray and he told us he wanted to do a CAT so he could see a 3D imaging as he had suspicions that the break was worse than the xray was showing. What a very smart doc for sure! They put on a purple cast and wheeled her out for the CAT. He said he would call us if there was a problem or they needed to see us sooner than the two week appt we made to follow up. For now we thought 4 weeks no weight on that foot and 6 weeks in the cast.

I waited anxiously all Tuesday, we were at family camp so I was trying to help Kayla find things to do, all the while hoping we wouldn't get that phone call that something worse was going on. Evening sessions started at 6:30pm and we were half an hour into the session when my phone rang and I knew from the number it was the orthopedic doc. My heart sank. I handed it to Jeff as I knew I wouldn't handle bad news.

The doctor shared the results of her CAT and it was very bad and she would require major surgery to repair the damage. I bawled, I was devastated. I was scared to let Kayla know. She was still sitting in the meeting tent and we knew we couldn't wait to tell her so Jeff wheeled her out, she was in a wheelchair, and also had Elizabeth come out as at this point Elizabeth knew something was up. We broke the news to her and she cried and got really scared.  We shared with her that surgery was necessary as her break was very severe and if we didn't do the surgery she would never heal right and could create a boatload of problems in the future. The doctor couldn't do this kind of surgery as it was much to complicated and so he had to refer us to another orthopedic office in Portland. So he said he would call us Wed. to let us know when we could go see the doctor there.

Wednesday was a day of waiting again then finally got the phone call from the Maine Ortho office that we needed to come in to see Dr.Barr at 11:15am Thursday morning. When we got there Dr.Barr was running late so we had to first speak with his PA, who happened to be the husband of the very first doctor Kayla saw that said it was a bad sprain! Good lesson for her I suppose. She will be more careful now to look at xrays more fully. The PA told us that he had seen her xray and also Dr.Barr too and so he wasn't sure at this point if Dr.Barr would agree with Dr.Goudreau's diagnosis of the need for surgery. My heart took a little leap thinking maybe, just maybe she won't need surgery!  However Dr.Barr finally came in and he sat down and showed us the CAT of her leg and we gasped...it was horrible, clearly broken down to her joint and through her growth plate. Surgery was inevitable. He said it needed to be done ASAP. So he ran out of the room and came back within several minutes and told us tomorrow morning 6:30am. At this point I was shaking inside knowing what Kayla was about to go through.

So Friday June 6th Kayla went through major surgery to repair her bones. It was more complicated than they expected and he said he had to make two incisions to repair the damage and used 3 screws, which will require another surgery to remove in 3-6 months.

Kayla is doing amazing though and has been a brave girl. How could she have broke it this bad just from being knocked over by our dumb dog? Some folks have asked me if her Lyme may have caused her bones to break easier. I don't know..it's possible.

I am doing fine I suppose. I am so exhausted from everything and being at family camp didn't help as the camp life isn't clean and comfortable so I couldn't rest well. My body aches and feels tired.

I didn't increase the Mino either while I was there. I increased yesterday and already today my brain feels funky. Sigh..will I ever be able to take this Mino without a problem?

I feel more Lymeish lately too..aching joints, even in my fingers. Knees hurting again. Not sure why those symptoms have returned. They were one of the first symptoms to leave!

So that's my update for now. It's going to be a long summer for poor Kayla as she can't put any weight on her foot for a long time and she will require physical therapy to learn to walk on it again.

Oh wanted to mention that Saturday, May 31st I had one of my Lyme hay fever attacks, was horrible! And a bartonella bright red bump appeared on the side of my nose...that's a first. I knew what it was immediately as it was bright red and within a couple of hours it got that nasty crusty stuff in the middle. Most folks would think it's a pimple but I know better now. Got to kill this bug!

And here's what it looks like one week later. Bartonella rashes are so bright and red. Very noticeable.

June 8th

May 31, 2014

Okay so maybe a lot of my painful joints etc was the fact that I was about to start my period. Woke up this morning with it so family camp time will be miserable!
So last month I herxed badly and the next day my period started so I am seeing a pattern. Although this herx was every night for a few nights. Last night was a better night actually. Not as much pain. This morning I am aching, and I have so much to get done to pack and prepare for family camp tomorrow!!! AHHHHH! I need help but I have one twin down and the guys are all doing the work for our friends adoption fundraiser today so they will be gone most of the day.

Not too long ago I had found a Lyme poster that spoke about how Lyme patients can have sudden bouts of crying. That's me today. With Lyme brain you can get easily overloaded which creates an exaggerated emotional response and you can start crying and not stop for a time.

Right now at 6am I am achy and fluish feeling, so classic Lyme. Last night we went to our old church New Life to see my dear friend as she just released her first professional cd and they invited us to the cd release party, I did ok but my left TMJ area had a very painful spot, right by my ear, today it's gone but my TMJ area feels a tad sore and my ear feels plugged a little. the lymph nodes in my neck last night were tender and aching too. So I am obviously battling this bacteria. The medications are killing it for sure.

I just called my son and asked if he and Allie could come over and help me after they are done with the farmer stand they do every Saturday. So I will have their help later this afternoon. I may call Grammie to see if she can help me too.

I haven't had the itchies in days! That's a wonderful thing. No rashes either.

May 29, 2014

Couldn't finish my update last night...I was in so much pain. My body is hurting, joints, my knees were hurting so much, climbing stairs, getting up off the couch..pain pain pain.

Still painful this morning but not as bad as last night, but that seems to be my pattern, I get worse at night.

I am so concerned about family camp coming right up this weekend.

Hoping for a better day. Laying low and resting. My body needs it.
May 28, 2014

Oh rough night as I slept on the couch with the girlies as Kayla can't go up the stairs, my body ached all night and I had restless legs and weird sensations shooting into my left leg. I am tired!!!

My brain is buzzing and feels dizzy and woozy. Ears have constant low level ringing that isn't going away. Heels didn't hurt too bad again this morning when I first walked on them. So thats 2 days of relief from that constant pain! So one pill is doing something.

Will hopefully update later as it's only 7am right now. Have to take Kayla back into the clinic to get a cast put on.
May 27, 2014

Wow, only 1 50mg dose of Minocycline and for the first time in a long time when I woke up and stepped down from my bed, my heels didn't hurt. Could it be possible that only one dose helped my heel pain? Since starting Rifampin back in April I haven't had anymore of that throbbing, pulsating pain in my heels, however for weeks in the morning my heels did ache and would subside after I was walking on them for a few minutes. I was pleasantly surprised this morning for sure!

Kayla injured her ankle yesterday and so am dealing with her being in pain. Suspecting a really bad twisted ankle, possible torn ligaments.

Hearing sensitivity this morning. Doors closing made my head vibrate! Definitely need my itchy pill.

Will see how the rest of the day goes for me!

9:25pm, UGH HOW CAN I HERX ON ONLY ONE DOSE SO FAR! I am so achy right now, weak joints and even my finger joints feel swollen. I haven't felt this pain in a long time! And most of the afternoon I was getting a sharp stabbing pain in the back of my head, then it migrated to my left jaw TMJ area. I KNOW this is a herx but only after one 50mg Minocycline! Oh my what will happen when I increase?

I have made a choice though and this time I am not stopping. I have got to kill these bugs in my brain. My head has felt so weird today, buzzy, whooshy light headed, stiff achy neck. Like having Lyme all over again!

On top of everything else Kayla's foot is fractured! And they want us to come in tomorrow to cast her and then send her to an orthopedic doctor as they have concerns about her growth plate! Yikes!!

Well gonna try to get some rest. I am just so achy right now I don't wanna move! Typing this has been wearisome as my fingers feel so tight and swollen.

Good night!

May 26, 2014

Wow, where has May gone? It's true the older you get the faster time flies.

So today is the day I start Minocycline again...3rd round...let's do it. I can feel the bacteria in my brain so I know its there and it's waiting to be killed....lol
It's truly a battle. I know I can do this. I spoke to a lady who is also a patient of my LLMD and she encouraged me this time to not give up on the Mino. She said I need it to cross the brain barrier and kill this bug. She said I need to ask for help and allow myself to be sick. She said, "I'm not trying to be harsh on you Donna, but you have gone through so much already and I know you can do this, so stay on the Mino no matter how you feel." I guess I really needed to hear that.

So here's praying for strength and courage to increase gradually over the next few weeks. Today is a 50mg tab, then Wed, then Friday. Then Mon start taking one 50mg everyday once daily, then the next Monday take 1 50mg twice daily. And that's all he's allowing me to have for now. The first time I herxed badly was with the 100mg a day, the second time I herxed was with 200mg a day.

This morning I don't have the itchies...yet....not holding my breathe as this seems to be a daily symptom, but my itchy pills do wonders! Yesterday I had red itchy bumps on my left under arm area. That wasn't fun. Also yesterday evening I started feeling parathesia in my right cheek, and my cheek bone was tender to the touch. Still lingering this morning some. Not the pain, just the weird sensation of bells palsy...very mildly though.

I have to say that those severe headaches have been virtually non existent for some time. And anytime I feel a slight headache coming on peppermint oil has cured it every time! These oils work!

My lymph nodes in my neck are off and on tender and a tad painful, so I keep applying Thieves oil at nighttime. Figured it can't hurt!

Mornings have been painful for me, my heels ache, but after I am up for a bit it all subsides. I still have very weak joints and muscles. Last night after all our company left I vacuumed the rugs and my right hand was so sore and weak I could barely move it.

Well, gonna eat some breakfast then take my meds, Minocycline here we go again!

May 24, 2014

Well today was a bizarre day. I started out ok. Kinda achy but not too bad.  Itchy again so took an itchy pill. Then Jeff came downstairs and we really haven't talked a lot lately as he's been so busy at work and coming home so late so we started talking my appt yesterday and how it was seeing both sides of the Lyme war with my PCP and LLMD. It truly is two different perspectives and both think the other is crazy. Anyway, Jeff started questioning how long is too long to be on abx and also why are so many still sick after years of abx and how long do I have to be on abx? He just doesn't understand and is concerned about keeping me on meds for much longer. And again how do we really know I have bartonella?

So I tried helping him understand what I was being told by my LLMD and also I have from the library Dr. Horowitzs book, Why Can't I Get Better? That I have been browsing through. So I had him read some sections and then I read to him this daily journal as Jeff honestly doesn't know how bad I have been on and off. As I was reading my journal back in March I started bawling! To know how miserable I have been and how much pain I have had and I see great improvements and yet I still have such a journey ahead of me, it became even more real to me and the emotions just started coming out like a river, gushing sobbing tears.

I can truly understand the depression that comes along with this illness. Today I felt that way. Maybe it was because the bacteria has been messing with my brain today. I don't know but my brain daze and buzzy foggy feeling was bad today as well as hearing sensitivity. I've also had heart racing today and just feeling short of breathe. Could be from emotions. Who knows. But I realized more than ever I need Jeff's support and can't handle him doubting. I almost want to test the waters. Go off all meds and see what happens to me.

So this is why this has been a bizarre day for me. I have been very weak today and emotional and slow.

Here's hoping for a lovely Lords Day tomorrow with company coming over from church.

May 23, 2014

So today is the day I meet with my primary care doctor. Doing a physical and pap smear. I sure hope I don't hear a ton of negative about the abx I am on, and disbelief in my Lyme treatment. I am prepared to be strong and defend my LLMD as there is absolutely no doubt the treatment is working and I not only have Lyme but Bartonella as well.

Yesterday my brain was sensitive, I can always tell when it is because my hearing sensitivity becomes worse. So the bacteria is still in my brain. The itchy rash was there and I took 2 itchy pills and got relief! Yay! Loving my itchy pills!

Had a rough sleep last night with joints aching etc but I am convinced more than ever the weather does affect me.

I started ordering different herbal remedies for Joint support and Lymphatic Drainage from Natures Sunshine. I also got Activated Charcoal from Amazon. I am going to start preparing myself for herxing when I restart the Minocycline again on Monday. The joint support it mainly for the my tissues that have been damaged due to the Lyme being there for so long. I asked my LLMD if the pains I still have could be tissue damage and he said absolutely. The pains in my knees aren't like the pains I had when Lyme was untreated so I knew it must me tissue damage as I read many folks have this problem when they suffered Lyme arthritis. So I will start treating that to repair the damage and see if I get relief. Just ordered it last night so next week I should get it.

I will update later about my appt today.

May 22, 2014

Itchy medicine works! YAHOOOO! I took one yesterday morning and within an hour itchiness stopped, then it returned again around dinner time so I took another one and wala! No more itchies! No more itchies!

I am doing very well, other than itchies right now. No headaches, no neck pains, no joint pains, still fatigued feeling but at least we know why.

I think I overdid it yesterday as I was baking gluten free goodies from mid morning till mid afternoon, had two dear Canadian brothers stop over to grab some signs for pro life work that I had Daniel whip up for them, they are on their way to Maryland for a conference. So I fed them lunch while I was still baking so I figured it out and I was on my feet for 5 hours straight! So yeah, my soles are achy but it's not bartonella or Lyme achy, I can tell the difference. I just have weak muscles and joints and if I over do I do get sore.

Kiara had another day where she was sickly, she slept alot. Headache, nausea, so I applied Thieves oil to the bottom of her feet. I am going to start journaling her frequent weird sicknesses that come and go and see if there is a pattern, and if I see a pattern of this I will have her tested for Lyme. I know I have questioned it several times in the past few months. If any of you reading this remember me saying something about her can you remind me?

May 21, 2014

Whooops, forgot to update yesterday. Got my iron level results back and it was bad bad. Was an 18. Should be for normal anywhere between 50-175. So now I am confirmed to be anemic. Low hemoglobin and shrinkage of red blood cells. Am losing blood somewhere. Friday I have an appt with my primary care and I fear I will be taking a lot of flack for my Lyme treatment. They are probably going to blame long term abx for my anemia. So here goes the Lyme controversy. Fun fun.

I started taking the iron supplements and Joshua researched some more and found that many Lyme patients do go through this and they found two connections to low hemoglobin and iron and shrinking red blood cells. One was the co infection babesia, which we are pretty sure I do not have as I have none of the symptoms, and the second is that ole sailors disease, scurvy. Lyme can deplete Vitamin C and iron can't survive if I am low on C. So Joshua said it's worth trying to start C tablets as well as the iron pills. So gonna start that today. Anything is worth trying!

Itchy today so I got to take my first itchy pill that my doc prescribed. Last Friday I was going insane and so he prescribed an anti itch medication. I hope it works!

My lymph nodes in my neck are a tad sore today, another classic bartonella symptom. Next Monday I take 50mg of the Minocycline...scared of that stuff but I have to be on it to kill bartonella. At least the rifampin has done a good job killing off much bartonella in the mean time. The red rash and blotches have gone away. So that's a wonderful thing.

Lyme symptoms have decreased a lot. No more cringing in the mornings, can go up and down stairs just fine. My right arm is fully functional again. Hardly any neck pain anymore. Headaches and migraines have subsided immensely. Most symptoms I deal with now are bartonella. Itchy rashes, brain buzziness, hearing sensitivity, tenderness in my lymph nodes and skin. The minocycline always makes my brain feel worse with pressure and confusion and fatigue but I have to get through it. This is why my doc is starting me slowly again and he said if the herxing gets to be too much just back off a bit and slowly ease back in, eventually it won't be so bad as more bart is killed in my brain. Bartonella is notorious for brain infestations. And boy do I know this to be true. I can honestly tell I have bacteria in there.

So at least now I know why I have been unusually sleepy, especially after lunch time around 1-2pm I want to sleep. I have given myself permission to sleep whereas before I knew I was so anemic I thought I was getting lazy and I didn't allow myself to rest. I know better now so sleep I will!

May 19, 2014

So today was mine and Kayla's appt with our doctor. Kayla has to ease into her antibiotics again since her stomach was affected. He would rather her not go on 8 tabs of amox a day if her stomach can't handle it. SO we shall see.

Me on the other hand.....my hemoglobin levels were dangerously low. He's concerned and so right now I havr to take iron pills daily. No wonder I have been falling asleep int he afternoons. I have been exhausted. He wants me to get a pap smear as in the past I have had a bad reading with A Typical Rare cell formation...but when they did the biopsies things looked fine and my last pap smear I was normal. However I am losing blood somewhere...my menstrual cycle isn't any different, but my unusually bloated abdomen and now in two mons I lost a unit of blood, as my last hemoglobin was at 9 and today it was 8, so that is an entire unit of blood, somewhere I am losing blood. We have to figure this out. My platelet count was fine so leukemia is ruled out, thank goodness.

Lyme can affect so much in our bodies and weaken us, and having such low blood levels is certainly not helping me. So I will be calling my OBGYN to schedule a pap smear and getting that checked out first.

I gave him the pictures of my red blotch and he confirmed those were the bartonella showing itself. The extreme migrating itchiness I've been having with  the rashes that travel too is all bartonella. He gave a prescription for the itching. Thank the Lord! Last Friday I was miserable with all the itching migrating everywhere!

So Lyme wise I am healing good, but there's other issues to deal with now. Why am I losing blood is a scary place to be right now. :(

May 18, 2014

Behind again! Had a good day yesterday. Fridays itchy day was gone. I did have a painful night and I think it was the pouring rain. My joints were aching so bad. Took me a good half an hour to feel better after getting out of bed. I had minimal brain funkiness yesterday too. I'm still experiencing a bruised feeling on my skin, upper arms and thighs. Will ask my doc tomorrow what that could be. I did read that is babesia co infection. I wouldn't be surprised.....blegh. Oh and yesterday I also had some swollen lymph nodes on my right side throat. That is classic bartonella. Comes and goes. Swelling is gone right now.

May 16, 2014

Whoops forgot to update yesterday. I had a pretty good day yesterday. Just feeling that weird metallic buzziness in my brain which causes my hearing sensitivity. Body itches too and today my left thigh has a rash and it itches like crazy! I did take a pic and cropped it so it wasn't immodest...hahaha.... Not sure what that is. Going in on Monday so I will ask my LLMD.

Last night was a full moon I believe but I didn't react! I was a tad nervous as it has been a consistent thing that I flare up with so much joint pain at night but not last night..whoo hoo!

Heading out here soon to stand for Life. May the Lord go before us and prepare the way.

May 14, 2014

HAY FEVER!!!!!! AHHHHHHHHHH!

Have weird sensations in my brain this morning. I don't know how to describe it except metallic feeling. Buzzy, electrical. Hoping its still that mino leaving my body. I don't ever want to go back on that! But I have toooooooo.....maybe next week. Will update later.


May 13, 2014

Good morning, how can we go from 80 degrees to 50 today? I am whining. And yes, I would like some cheese with my whine.

Yesterday was a painful day for me. Felt stiff and achy. But I didn't let it stop me from enjoying the gorgeous weather outside. I planted my azalea bushes and did some raking.

I still feel sore today and itchy. And hay fever! And stiff body and joints. I feel like I need a good hot tub to soak in. A massage would hurt too much as my skin feels sensitive to the touch.

The Mino is leaving my body...good riddance. Afraid to go back on it again. My stomach is back to normal but I think I will wait tad longer before I slowly add the 50mg back into my daily protocol.

May 12. 2014

Had a really nice Mothers Day yesterday. The Minocycline is wearing off so my brain was feeling pretty good. This bug in my body though was having a fun time migrating from place to place, one moment I was having sharp pains in my TMJ area on my right side, then it went down to my lymph node area in my neck, then it went to my shoulder then to my wrists. Off and on, all day yesterday, I would get a slight headache then it would go away again. I wish we could actually see these buggies making their way in my body, traveling..then at least I would know where I am going to hurt next! Such a strange thing when you think about it.

I am sore this morning, my upper arms are sensitive to the touch. ALmost bruised feeling when I rub my skin. Very weird. Joints a tad achy on and off. Brain feels good. No whooshy weirdness!

May 10, 2014

So I heard back from my doc yesterday. Once again I am so blessed to have such an incredibly compassionate, well educated  Lyme doctor.  I explained to him my symptoms since starting minocycline. Told him I felt agitated and restless and since Sunday's increase to 200mg I started having nausea and in the evenings I was getting spacey and couldn't handle being awake.

He immediately said "get off the mino"...again....he said the agitation is another herx reaction and the spacing out is also a herx. The nausea is also the medication.

So the plan is to give myself time to heal my tummy...then he wants me to go back on mino but only 50mg twice a day. So I have to break open the capsule and divide the powder. He said he thinks this is the only amount my body will be able to handle until more of the bacteria is killed off.

I asked him again if this is clear confirmation of the Lyme and bartonella and he said absolutely. He said he was hoping that I could have been treated with no herxing as I did so well for so many years with this in my body, he thought that I would have handled it better but apparently the bacteria is stronger than he thought. But having these reactions confirms the bug in my brain and body. He also reminded me that the antibiotics are not pain killers so the absence of so much pain now shows the abx are killing the bacteria, it's just going to take a longer time than we hoped for as I can't handle higher dosages of the abx right now.

I go again to see him on May 19 and he said anybody can come as he was concerned about me dealing with 'doubters' and he said I need encouragement not discouragement and folks casting doubts on me.

Today my tummy feels better, a tad nauseous but certainly not like yesterday. My head feels buzzy and tingly. Had some achiness today and I am contributing that to the weather. I do seem to be sensitive when the weather changes.

So once again we have to regroup and start things over and try again. This disease is annoying but I am so encouraged to have the most incredible doctor.

May 9, 2014

My nausea is so bad right now..had a rough night sleeping because of it. Am staying home and have a call into my doctor to see what he recommends. Also want to ask him about the agitation feeling.

Am a tad discouraged as I heard that some folks are questioning if I really have Lyme only because I have never had a blood test confirming it. Folks don't understant that the tests are not reliable. And the only really good tests are $750 and have to be sent to CA and takes several weeks for results. My doc said he doesn't need a blood test to confirm I have Lyme and bartonella as my symptoms and the way I have reacted to the treatments confirm his diagnosis of my Lyme and co infection.

Since starting abx here's the improvements:

no more right arm numbness
weakness is gone in my right arm
neck pain subsided immensely
no arthritis pains in my finger joints
heels stopped throbbing with pain
I can walk normal when I wake up in the mornings, no more crouching over and slowly working my way to stand up straight
facial numbness has subsided alot. The only times I get this is if I get a headache that is Lyme related
knee pain subsided immensely

New symptoms since starting abx

red rashes
migrating joint pains in wrists that I had never had before
brain weirdness
left side of my body having the Lyme symptoms
nausea
elbow pains..first left side, had some in my right but mostly left elbow

There might be some I am missing. But thats all I can think of right now. My stomach is so bad right now but I must try to eat something, feels like morning sickness all over again! UGH!!!!!!!!!

May 8, 2014

Okay nightime is killing me recently. I go complete vegetable with lightheaded ness and head/brain pressure and extreme fatigue. At least I can sleep and I have been sleeping pretty good. But by 5-6pm I start losing cognitive functions. It's hard as we usually spend quality family time but I just can't stay awake or feel good to be able to spend time. I am fine int he morning and during most of the day though so that's good. Also for the past week I have been so nauseous after I eat something. Almost makes me not want to eat. Not sure what thats from. Either the medicine or it's another herx reaction...who knows...well, God knows..Father revela to me the problem so that I can get some relief.

On my way to Freeport to meet Leslie and her boys!

May 7, 2014

Have had a very tired morning, just felt overly exhausted. So decided to listen to my body for once and stay in bed. I don't usually do that as I feel like I am wasting my day. I really do need to be ok with being sick. I have a really hard time allowing myself to be a sickly person. Last night Jeff and I went to see the one night only showing of the movie/documentary Irreplaceable. I got so lightheaded and couldn't stand straight after the movie. Not sure if the screen was too much for my Lyme brain or what but I felt so woozy and sickly and couldn't wait to be home in my bed. As soon as we got home I went straight to bed. That was certainly strange and a bum as I fear for family camp coming up, I hope I can handle the activities.

May 6, 2014

Must have over did it yesterday as I am so sore and tired from walking and driving so long. But other than that I feel fine. Still got that agitated feeling though and I am pretty sure it's a herx reaction. Gonna call my doc today to see if there is something I can do. I tried oils and nothing seems to help, and I don't have all the oils that were recommended to try. So so far so good! Day 3 of the increase.

May 5, 2014

Forgot to journal yesterday. Had a good day yesterday, although this agitated , restless feeling is a bother. Sitting in church was hard as I just was so fidgety! Other than this I am doing well. I did increase to 200mg Mino yesterday and so far I am ok. But I don't seem to herx until 3-4 days after an increase. So am thinking Wednesday I should brace myself. I am a tad wheezy this morning. Not sure where thats coming from. Not horrible but it's there and thinking I should grab my inhaler just in case. Am heading to Manchester, NH today for shopping with Elizabeth and Allie and other young ladies from church. Will update later tonight.

May 3, 2014

Okay so I must have overdone it as I am achy today, not a herx ache, just over exerted my muscles. Naughty naughty. My doc repeatedly warned me to never over do on my good days. Woke up with a headache today, so have applied M Grain and will see if that takes it away. If not then my wonderful peppermint, but since I am running out of it I am trying to use only M Grain right now. My hearing sensitivity is pretty bad today, probably due to the headache. Every noise is making my head vibrate. Abraham just took silverware out and I cringed! This is one of the most annoying herx. Other than this headache and sore muscles from walking and standing alot yesterday, I am doing ok. Agitated legs are gone.

May 2, 2014

Another good day! Was able to go into Portlnd to stand for Life. Then shopping. So strange that I was so bad on Wednesday. So glad it was short lived herx. Beautiful spring weather, int he 70's. Gorgeous! Experienced very strange agitation in my legs. They just felt very restless, like I needed to move them alot. I posted the question on my YL group and folks said it is a herx and to use Peace and Calming on the bottom of my feet as well as Thieves. I did this and I did see improvement and was able to sleep. I was worried I would feel too agitated to sleep!

May 1, 2014

Having a much much better day today! Still tired from herxing yesterday but my body pains have subsided immensely. So have been taking it easy today watching Left Behind 1 & 2 with the kiddos. haha..and that time of month started so am wonering if the herx had anything to do with that.

April 30, 2014

Bad day

April 29, 2014

Happy birthday to me! Woke up from a pretty restful sleep. Still no headaches! Yesterday by late afternoon my wrists and the muscle between my thumb and pointy finger on my left hand were in a lot of pain, but I will take that over the headaches and brain pressure any day! So if this is herxing on the Mino this time I'm fine with it! Today is day 3 of the Mino. Last time I only took 4 doses and I was herxing so bad. So I am very encouraged! It's wonderful not having pain and that horrible pressure and painful TMJ pain in my head!

April 28, 2014

Still early yet as it's only 7am, but still feeling pretty good!! Today will be day 2 of the 100mgs of Mino. Last time I was already feeling horrible so it seems like I may not herx! So that means the Rifampin has killed off enough of the bug in the past few weeks so yayayayaya!

April 27, 2014

Another great day with hardly any symptoms! I just would have every now and then whoosh in my head but nothing bad. It's not like I feel completely normal but certainly I feel pretty good and am smiling a lot! Was so nice to be able to sit at church and enjoy having conversations and not feel like I was struggling with words and focus and dizziness. I did increase the Mino to 100mg once a day, then next Sunday I increase to 200mg a day. SO far so good!

Kayla's stomach has been doing horrible so yesterday I called our doc and he had to take her off her Amox. She's developing c diff so that's not good. Her stomach is hurting alot and diarrhea at least twice a day.

April 26, 2014

Still doing pretty good. Having bad allergies this morning. Weird how Lyme affects this as I usually only ever had hay fever in the fall. Been struggling with this since November off and on.  I am experiencing joint pain today and last night. Wrists hurt and ankle joints. Not sure if it's the Lyme coming back as we have stopped the Clarithromicin in order to treat the co infections. If it gets bad I will call my doc. My brain feels pretty good and no whooshing and lightheadedness. No headache. Even my blurry vision is better right now. :)

April 25, 2014

Again doing good! Half dose of the Mino seems to be fine with me. I am experiencing more hearing sensitivity though, that must be from the Mino. Heading to the murder mill to plead for babies and proclaim the Gospel!
April 24, 2014

So far so good, I do feel the effects of the Minocycline but nothing bad. Just a little heavy head feeling and lightheaded. No pain! Will update later!

April 23, 2014

So I am back from TX and I did so well! I had one day, Friday afternoon, that one of my usual intense brain pressure migraine and numbing of the face started. I went back to my hotel room and rubbed peppermint oil on and took an hour nap, miraculously I woke up with no more pain! This was a first time ever! I was able to enjoy the conference and trip incredibly with very minimum Lyme problems. I had the usual lightheadedness and brain foggy moments, but I can deal with those, it's being pain free that I was loving!!

I started back on Minocycline this afternoon. My doctor wants me to start really slowly so I have to break open the capsule and separate the powder so that I am taking 50mgs for the next 4 days, then 100 mgs for 7 days, then 200mg the next week. He said if I did herx to push back to 100. So we shall see!

So as long as I am not herxing I will continue on.

My bartonella big red blotch is finally gone!! Yay! My doc said that is a great sign that I did break out with it. Shows the bug is fighting back and thats what we want to see. I amy get more but we may be killing it so fast that it's not going to show itself like that again.

April 17,2014

Here we are in TX. I am doing so well. No headaches and no painful joints.
I am exhausted from the traveling. That was a long trip
My allergies have been acting up since yesterday morning. I know this is Lyme related as I never have allergies this time of year.

We will have long days ahead so I am really hoping I do well. So far so good!



April 15, 2014

Well, not sure if it's because of the full moon, many Lyme folks say a full moon flares up symptoms, but my wrists are hurting something terrible this morning. Still itchy too. But it's not debilitating, just annoying. A busy day for me as I have to get the twins ready to stay at Elizabeth's so packing, cleaning then off to piano.

April 14, 2014

Another decent morning. Hardly any brain pressure, a tad buzzing in the brain feeling but not too bad at all. No pain, very slight headache that resolves itself when I stand up and move. But still dealing with itchiness. I probably just need to detoxify either by a dreaded bath...I hate taking baths....or a sauna!

9pm and about to head to sleep. This has been a good day! Other than the itchy spots. No headache, no brain pressure. I do have some weakness in my wrists and felt a tad exhausted around 7:30pm on. But that just may be my body saying it's time to shut down. With Lyme disease it seems when I need to rest, my body lets me know for sure. I am a tad bummed as I seem to be getting a big blotch on my face. How embarrassing. I hope it doesn't get big like the one on my leg. I put lavendar and frankincense on it.

Here's hoping for a great day tomorrow as I have to pick up Elizabeth in the morning, take the girls clothes shopping, piano lessons then head back to Elizabeths to say bye bye to the twins as they are staying there while Jeff and I are in Texas.

April 13, 2014

So a good day today, no headache, hardly any brain pressure and no numb cheek. Had a good time at church and didn't feel like I was forcing myself to smile and act normal. My red blotches are redder and itchy. Here's the big one on my left leg.

April 12, 2014

So I forgot to update yesterday. I did go to Portland to stand for life. It literally wiped me out. I only drove to Grammies house to pick her up and she drove the rest, and then Allie drove us home from Grammies.  My brain is not functioning normal. I feel so much pressure and lightheaded and buzzy and tingly and my right cheek has that numb feeling, sometimes feel borderline paralyzed like I am smiling crooked or talking crooked.  My doc says all this is a herx, but how long do these herxes last? I am so weary of this brain feeling. I want my head to feel normal again.

This morning had me in tears, tears of frustration because I want to live again normally. I want to be able to drive again, to wake up refreshed, to not feel this weight in my head. I am grateful to not have those body pains like I used too, but honestly the treatment has brought out too many new symptoms that are more debilitating than the daily aches and pains I used to have. The itchy body and itchy sores and bumps are driving me insane! I feel like I have bugs crawling on me!  This brain pressure and hearing sensitivity is hard to live with daily. Nighttime I am wiped out, I know when I talk to people I must looked drugged alot as I can feel my eyes half closed, and I fight it so much, I really try to act normal but fighting this brain daze is so hard. When will it end? How long is this herx? Is it really a herx?  It's good I have this journal so I can type my thoughts down. The financial strain of treating me and now Kayla is scaring the day lights out of me! We are struggling financially since treatment and that stress isn't helping my head at all. I find myself crying at least once a week from the financial stress. I was selling aprons but I can't even sew right now because I feel way too dizzy and clumsy.  I don't think most folks understand all this as I really haven't had offers of help. No phone calls to see how I am doing. Nothing. I know I try to look okay in front of people, but I really am not ok! I feel bad my kids have to take such loads on themselves. No I can't let my house get filthy! I will feel worse, so because of this my kids do chore after chore and get hardly any schoolwork done so I feel guilty and feel more depressed..endless cycle. I need to change something. They need to be allowed to be children, do schoolwork and then get some play time. They are always cleaning, cooking, laundry, a little schoolwork. I feel bad.
So this is where I am this morning. I hope to be more positive later. Gonna listen to a sermon now and remember that I need, I NEED to focus on God! I am almost ready to give up and stop all treatment! Oh Lord Jesus help me please. I am so battle weary and stressed out financially. help me. I am so sorry for feeling so discouraged, but I can't help it right now. I need You Jesus, I need You to give me answers and to get me through each day of these ailments and fatigue.

Here's some pics of the red rash I am getting and also the big one I have been dealing with for weeks now. The red rash on my face is a tad hard to see trying to do it as a selfie..lol..

Biggest blotch on my left leg.

New red blotch on my upper right leg

New red blotch under my right knee

Hard to see but I have a few red bumps that itch like crazy on both sides of my face

A new bump on my neck

April 10, 2014

So far so good, other than the dizzy, buzzy headed feeling. My doc said this stuff in my brain/head is herxing and to be expected as we kill the bugs in my brain. The hearing sensitivity and the lightheaded, weird sensations in my head. Kind of feel spacey and loopy and struggle sometimes to get my words out.

Yesterday I drove the girls to piano lessons but ended up calling Jeff to drop Jonathan off to drive us back as I wasn't feeling safe to drive. This was a first time. I just got really sleepy, unusually sleepy and felt spacey. Body felt tingly.

Had some pain in my neck and head when I woke up this morning but that has subsided since being up. No pain anywhere else.

3:31pm and boy, my brain has felt funny today. My left upper eyelid keeps twitching too. Annoying feeling. Also found more red bumps coming out on my right leg. This bug isn't happy that it's being killed! Have redness on my right cheek as well. Not too noticeable, but I can see it as I know it's not usually there. Also my right cheek feels like that weird numbing, slight parathesia feeling. Just been kinda spacey today too. No pain anywhere though!

So here's the latest pic of my red splotch. It's been itchy today and also I took a pic of two new red bumps. We shall see if these turn into the same red blotchy wotchy.
My phone won't let me upload the pics. Will try on the laptop tomorrow.

April 9, 2014

Good morning. So far so good. Just a slight headache so I applied peppermint and Pan Away oils right away and I feel pretty good! Have more red itchy spots on my legs mostly. I am showing signs of other co infections and not just the bartonella. Yesterdays heart issue and red itchy spots are very common for babesia. Great. Well at least I am on the right medication to kill these buggies. I'm thinking I need to write a song about killing buggies. I think it will be a big hit.


April 8, 2014

UGH..horrible headache since last night, all through the night..again worse when laying down. Now I am up and trying to function but it's pretty painful. I rubbed peppermint and Panaway and going to take it easy and see it this thing subsides. I just don't understand these headaches that come on suddenly at night and are worse when laying down. Other than this headache I have no other Lyme pains.  Will update later.
So this headache was strange. I had along with it weird sensations in my heart as well as some rapid heart rate and shortness of breathe. Started feeling lightheaded and woozy. I had to lay down. Jeff was concerned. But I assured him I would be ok but he went and woke up the twins to stay with me just in case something happened. After about 30 minutes it all stopped. Even the headache started to subside and most of the day I dealt with pressure in the right side of my head and some cheek numbness.
So I laid low and did pretty good the rest of the day.

I did put a call in to my LLMD and asked about my hearing sensitivity as it's really annoying. He said its a herx and will get better as I continue with abx. Great. It's been almost a month of it and although not debilitating me it's still so uncomfortable.

April 7, 2014

Had my first in a long time NO HEADACHE sleep at night! I am feeling pretty good, just dealing with itchy body, sometimes literally feels like bugs crawling on me. But that's it! Nothing else! No pain!

So I really did have an incredibly good day, up until 8pm when I started getting that annoying nighttime headache that is always worse when I lay down. Hopefully it won't be so bad. Will apply some oils and hit the hay. 

Kayla had some head pressure today and itchy skin and she felt tired she said. Her stomach also was bothering her. I applied peppermint oils and it took her headache away significantly. 

April 6, 2014

Another great day for me! Had the typical headache last night but I did take Advil PM to see if that helped and I think it did although I did wake up a few times from the headache. Always worse when laying down, this is so strange. But I woke up and within 10 minutes of standing up the headache subsided, I went to church! Yay!  I felt wonderful! I wasn't sickly at all. A tad dizzy and lightheaded but I wasn't stuttering or feeling like I couldn't find the words to speak.

My red blotch is still there, looks yucky still. Tonight I am experienced itching! My body feels like there are bugs crawling on me so I am assuming it's buggies inside of me going crazy that they are being KILLED! YEAH! Kill the buggies!

So a GOOD day report! Yippeeee! Let's keep having these good days! No joint pain! No elbow pain!
 April 5, 2014

Had a rough sleep as I had that headache that is worse when lying down. I got up because of it as it's so much easier when sitting straight up, so I applied peppermint which gave me instant relief.

My shoulders are aching and my lower back.

I am noticing some knee joint pains again, not horrible, but more than it has been and also my right wrist was giving me some pain. I am not sure if it's because I have stopped taking Clarithromicin for the Lyme. I'll see how it goes and if after my TX trip I am getting worse I will have to talk to my LLMD to make sure it isn't Lyme coming back since we aren't treating Lyme like we were , but instead are focused on the bartonella right now.

Also last night I had a heaviness on my left side of my head and my brain felt weird. Sometimes I was struggling with words and getting sentences out. So I know the Rifampin is working as I feel a war in my head. But it's still not bad like it was with the Minocycline. So I am persevering!

Kiara is worrying me as yesterday she complained alot of knee pain and her heels kept hurting her. I would often find her sitting down rubbing her heels. She ended up with my slippers on with the gel heel pads. Keeping a close eye on her as a few weeks ago she was worrying me that she had Lyme as she was sleepy alot and her knees were hurting, then it went away, but now she's complaining again. And she is not one to complain unless she's really uncomfortable.

So here's what my blotchy wotchy looks like this morning.

April 4, 2014

So went to bed last night with a slight headache coming on and it pretty much was that same type of headache that was worse if I lay down. But wasn't as excruciating as the other one so I was able to sleep, tossed and turned some.

I applied Peppermint and lavender and massaged it in, this has given me relief. I have no joint pain at all. Just the headache and hay fever sinus stuff again. Was glad to find out I am not alone with the Lyme attacking my sinuses. Seems to be a frequent ailments of Lymies. We are just a bunch of snotty people I guess. hahaha...Gotta find humor somewhere!

I've been applying frankincense to my red blotch. Here's how it looks this morning. Not too shabby eh? Yippppeeee!

April 3, 2014

Another good morning so far. It is 5:45am and I feel good! Other than a little ache in my neck and lower back and a little dizziness. But I will never complain about this little amount of pain. Just thought I should at least record it for future reference, for those days that come when there isn't even a hint of pain in this body!  I was wondering how I would be doing since I increased Rifampin yesterday.

Kayla starts on her Plaquenil today. She informed me that she doesn't feel very well. Aching knees and the bottom of her feet hurt she said.

My red blotch seems to be getting bigger.

It is currently 7:45pm and about an hour ago I started getting a slight headache and very tired feeling. This may be the herx coming on since the increase of Rifampin was yesterday afternoon. Gonna lay low and rest up and get ready. Have my diffuser all ready in the bedroom, oils by my bedside. 

April 2, 2014

Well having a pretty good day today too. Woke up pretty rested. Still have those aches and pains that cause me to toss and turn in the night but nothing agonizing like I have had. I have had a sore lymph node under my left earlobe which migrates down to that TMJ feeling area. So I have been applying Pan Away and Peppermint to relieve it, which it does greatly.

Kayla had some left elbow pain and some left wrist pain today, but nothing too bad.

So overall another good day to mark in my journal! Keep 'em coming! I love these good days! Gives me hope that someday all I will have are these good days and the fears of herxing and joint pain and migrating pains and headaches etc will be gone!

April 1, 2014

Wow, April already. I have been on Lyme treatment for almost 7 months.

Had a great day yesterday, I did realize I over did and so I stopped and had the kids finish dinner as I started getting a bad back ache and got achy flu like feeling in my body, that subsided as soon as I gave my body some rest from all the activity. I can hear my LLMD saying "See I told ya so"

I feel very good so far today. Had a decent restful night, I did have the usual aches and pains and tossed and turned some. Not sure what to do about this. But right now I feel pretty good! Tomorrow I increase Rifampin so we shall see how it goes!

So this really really has been a wonderful day! I even drove the car to piano lessons! No dizzy, lightheaded feeling, no pain. Just a little left elbow pain. But I'll take that pain over headaches anyday! Love feeling this well! I hope it lasts forever!!!

March 31, 2014

6am right now, had an ok night of sleep, head still ached and my shoulders and spine and back was aching all night. So I pretty much slept but tossed and turned alot. I also got really hot in the night, not like me at all as usually I freeze.

I didn't update last night, but by afternoon my headache subsided a lot and just had some heaviness in my head and light headedness.  The Ramirez family stopped over to see me as this is 2 Sundays I couldn't go to church. We watched Under Our Skin as I am encouraging Katiulca to get tested for Lyme. Was a nice visit and felt good to be socialable, gets lonely sometimes always feeling like you can't go anywhere and when you do you are trying to not act sickly. :(


March 30, 2014

After four wonderful pain free days, that ended. Last night when I went to lay down to go to bed I noticed a slight headache when I laid my head down. I figured sleep would take it away, but all through the night I was waken up by excruciating headache pain. Also my left lower back area would shoot sharp stabbing pains that I could feel down my leg. It wasn't a constant pain but a quick sharp stabbing pain that would come every several minutes. At four a.m. I woke up Jeff, and asked him to get my migraine medication Imitrex. I figured it was worth a try, however, it did not help. Around five-thirty a.m., I couldn't handle the pain any longer. So I came downstairs, and I realized standing up relieved the headache pressure. I tried sitting down on the couch, but even that made my head hurt. Only standing seemed to relieve the pain. I grabbed a bag of frozen cauliflower, wrapped it in a towel and held it against my neck while walking around the living room. I tried sitting down on the couch again, but it made me break out in a sweat. I felt woozy, and the headache pain got worse. So I remained standing or walking, until I tried our rocking chair which has a harder seat and I was able to finally sit down. Kayla applied Pan-Away and Peppermint, which gave me relief. Around ten a.m., I was able to lay down on the couch and fall asleep.

P.S.  This is Kayla, I wrote all of this while Mom dictated on the couch. I think I deserve a pay. Don't you agree? :)


March 29, 2014

Feeling pretty good! Woke up pretty rested and I have no pains. No headache, joint pains. It's only 7:30am right now so I will update later. Looking forward to a good day! Whoo hoo! I am loving these good days!! It's been forever since I felt this good!

March 28, 2014

Another decent morning, had a pretty restful sleep. No headache, just that same slight buzzy feeling in my head that makes certain sounds seem overwhelmingly loud. No joint pains at all. Thinking I am not going to herx with the Rifampin, so far so good!

Kayla's neck is much better, only slight pain.

March 27, 2014

What a day yesterday was. I was too tired to update here. I had a great day again, no headache, minor pain in that left foot I had mentioned and I had migrating arthritis pain in my left knee. So the bug isn't happy as it's moving around. My mini bulls eye on my left leg is bright red, I applied some thieves oil on it last night in hopes to get rid of it. Although it's actually a great sign to get a mini bulls eye as it shows treatment is working!

But the highlight of yesterday was not me starting Rifampin and doing great, but Kayla who had woken up in the middle of the night with incredible neck pain, she was in pain all day, swollen gland and neck completely kinked, she was lopsided as she couldn't move her neck, at the dinner table I noticed what looked like a bullseye. At first I thought maybe it was there because of the heating pad she was holding for awhile, but realized that's silly, why would it leave a bullseye in one spot when the heating pad was on her entire neck?

I posted these pics to 3 of my Lyme groups on Facebook and asked if they thought this looked suspicisous for a Lyme bullseye..I had sooooooooo many folks respond with YES! Get her to a doc ASAP!  With her symptoms of a stiff neck out of the blue and now this, her Lyme must have laid dormant all these months and is now rearing it's ugly head again. 7 weeks was not long enough to kill this bug!  So I called my LLMD and he said no doubt it's her Lyme again and he put her back on intense treatment, but also this time adding Plaquenil. So Kayla again joins the antibiotic club. Arg!

I had a good night sleep though, even though I woke up wide awake at 4:35am. Couldn't fall back asleep.

But I am so happy to have had another good day yesterday. So far today I feel pretty good, but it is only 5:30am right now. :)


March 26, 2014

Besides not getting a full nights rest because at 3 am I was awoken by Kiara because Kayla was in pain and needed me, I feel pretty good. No headache or neck ache today. I do have a sharp pain in my left foot near the edge whenever I walk on it. Never had this pain before. It's only when I walk on it.

I started Rifampin this morning so I am praying I don't herx or have side effects. We shall see.

Still have hearing sensitivity to certain sounds. Not fun!

Still have that red blotch on my leg, and I posted pics on my Lyme support group and someone said it looks like a mini bullseye which is a good sign that treatment is working so she said whatever I am doing keep it up! Yay..that was good news even though this bullseye thingie is gross looking. hahaha...

March 25, 2014

I'M ALIVE! haha, I feel GOOD today so far..minor pains but that's NOTHING compared to what I have been feeling like. Still a little light headed but not bad at all! After my morning devotions, I took a shower, made breakfast took my meds and I am wanting to go out someplace! I have been home since Sunday so I am ready to get some walking in.

Tomorrow I start the new medicine Rifampin. So we shall see how I do. The red rashy thingie on my leg is still there. It is raised a little and bright red. Will update later!

Another issue I have had for the past week that is a new symptom is hearing sensitivity. Not every sound but sudden loud noises or dishes banging, someone coughing or sneezing creates such loudness and vibrations throughout my head and body. I did mention this a few days ago in this journal. I did find out the name for it. Here's a link for it. Will blog about it later.

HYPERACUSIS

It is 10pm and I am happy to report that I had a decent day! No headache although the sound sensitivity has been annoying. Still some lightheaded ness. My red splotch is a tad redder tonight.
Here's hoping for another good day tomorrow!!

March 24, 2014

Horrible headache today and nausea. Called my doc, still waiting to hear. No joint pains, but head still feels like there's pressure, just not as bad as it was. Laying down makes it feel worse so I am trying to stay sitting up but wow, am I dizzy!

I finally heard from my LLMD and he said he truly believes this was a huge herx and not a drug reaction.  There's obviously a battle going on and it cause inflammation in my TMJ area first then the inflammation has no where else to go so thats why my brain feels pressure. And makes sense why I hurt when I lay down as that's putting more pressure on my brain.

So he scolded me first for not calling him on Sunday...he said he took an oath to be on call 24/7 and he said he knows that if Donna doesnt go to church on a Sunday to call 911..he's such a funny doctor.  He said he wants to switch the protocol around since the mino caused such a herx reaction, so instead of starting the new treatment with mino, he wants me to first give at least 48 hours for the clarithromicin and the mino to be out of my system, then on Wed to start the Rifampin. He doesn't want me to take the mino again till after my Texas trip as he doesn't want me herxing in TX.

I still have a weird ringworm looking red blotch on my left leg. It's been 4 days now with it. Looks like a bartonella red dot. (bartonellosis sufferers sometimes get erythematous papules, which are red splotches or slightly raised red spots that may appear on the limbs, head or neck.)

I am still light headed and if I lay down I get a headache, so not sure how I will sleep tonight. Here's hoping for a pain free night for once! Herxing takes a lot out of me. I couldn't believe how awful I looked. I took a pic to remember. HUGE difference from a good day pic!

GOOD DAY!

BAD DAY!!

March 23, 2014

Didn't go to church today as my head pressure and dizziness felt horrible! But miraculously all that excruciating TMJ pain was gone! However I had such head pressure, felt like my brain was being squished and I felt like I was in high altitude. So I decided to look up side effects of the minocycline I just started and sure enough, one of the side effects listed this:

"Minocycline may cause pseudotumor cerebri, which is a condition that causes high pressures inside the brain. This condition commonly causes headaches, blurred vision, nausea, vomiting, and dizziness. In most cases, the symptoms improve when minocycline is stopped."

So I guess I need to stop! I didn't take my dose this morning and right now at 8:47pm my head pressure has subsided a lot and my ears are no longer plugged feeling. I am scared to death of that medication now! Will call my doc in the morning and see what I should do.

My stomach isn't well either, I have stabbing pain in my right side under my ribs and also my diaphragm area is really sore.

I don't know how much medication my stomach can handle anymore! I need a break! I hate this Lyme!

Joshua is pretty sure my TMJ pain yesterday was herxing as the new medication must have been working to kill the bartonella and for same weird reason it created all that pain.

March 22, 2014

Had a HORRIBLE night with so much pain on my left side, in my head and TMJ area. Ears felt plugged and just hurting hurting! I got up early as we had to leave by 6am to attend a funeral for my sweet sister Connie. My head has so much pressure in it and my jaw hurts and I feel light headed and dizzy. I don't know what this is! It does sound like TMJ but it migrated from the right side into the left so it has to be Lyme related as only Lymies float around and go where they want whenever they want! I took Excederine this morning then on the way to MA I took 4 Advil. I was desperate! Didn't really help at all unfortunately.

No joint pains really, knees hurt some. But nothing bad. My elbow feels tons better today. Yay..something positive!

March 21, 2014

It is 4:35pm and I am just getting to this daily journal. Woke up with the usual headache, left side again. But I do feel better so I actually was able to read the book we've been reading for morning devotions out loud to the kiddos. No joint pains or anything! Yay! Slight heel pain in my right heel. That's a first, usuallly both heels hurt the same.

I drove to Hannford with Kiara and Abraham with me. Was very light headed and dizzy there and my left knee started hurting as I was walking.

So overall a pretty decent day for me. I did cleaning and laundry. So on a scale of 1-10, 1 being miserable and 10 being fabulous, I have had a 6 day. :)

March 20, 2014

Happy spring! Doesn't feel like spring with the 2" of freshly fallen snow and now rain making everything slushy.

Woke up this morning with same dizziness. I am not sure if this is a side effect from the new antibiotics Minocycline or the Ranitidine that I take at night. Will give it a few more days before I call my doc.

Had a very rough sleep as I was so nauseated and kept waking up with such nausea. I almost though maybe I was getting a stomach flu. But it is 8:56am and I just ate and my stomach is doing well. But boy am I still dizzy and feel pressure in my shoulders and neck. Borderline headache. Sudden loud noises are still bothering me, makes my entire head vibrate.

It is 3:20pm and besides a tad dizzy I AM PAIN FREE!!!! No joint pain, no shoulder blade pains, no back pain, no heel pain! WHOO HOO! But I am obeying doctors orders and staying put and not cleaning and jumping around. My right calf was twitching alot today but thats never painful and I really could care less about it even though that is a Lyme thing. :)  I do need to add that I had asked my YLO group what can I use in my starter kit for dizziness and someone had said frankincense. So I tried it and I have to say it worked! I am not 100% dizzy free but it subsided immensely!!

8:42pm and I am heading to bed. Nausea has picked up. Last night I couldn't sleep well as my nausea was so bad, I am hoping this isnt a new thing. No joint pains. No back pains. Here's hoping for a better nights sleep! Gonna diffuse some Peace and Calming oils to see if that helps. Good night.

March 19, 2014

I wasn't able to update yesterday as I had a horrible day.  I had an early appointment to go see my doctor. It's a 2 and a half hour drive up there, so Joshua and Allie and Nathan drove there as I am not able to drive with the dizziness and just feeling sickly.

When I woke up that morning I felt a very slight headache, nothing bad, and shoulder discomfort. On the way to to doctors, the headache got a tad worse. While sitting at the doctors I got a full blown right side migraine. It was good my doc saw it and he could see I was not doing well.

Good thing Joshua was there as he asked many questions for me and also he received all the new instructions for my new treatment protocol. My doctor has suspected for some time that we may be dealing with a co infection called Bartonella. After seeing me and hearing all my symptoms he confirmed I am not herxing, but this is bartonella rearing it's ugly head. So he started a whole new treatment plan with 2 new antibiotics and another stomach medicine for at night. I will slowly wean off the clarithromicin.

Light sensitivity was horrible yesterday. The drive home was agony with nausea and my head hurt so bad, I was so dizzy, Joshua stopped at Walgreens and bought me an eye mask to cover my eyes from the light as he could see I was trying to block out the light with my hood. Not only was light bothering me tremendously but sounds now are bothering me. A sudden loud sound makes my head vibrate and cringe. It's a new symptom since this bad migraine.

This morning I am still extremely dizzy and the sounds are bothering me. Dishes banging in the sink made me cover my ears and press my head. Kiara sneezed and same thing, I had to cover my ears and hold my head. Abraham coughed and I had to cover my ears and hold my head. Also this morning I had a pain in my left hip and lower back area, it migrated down the back of my left leg. My heels are sore to walk on. I have to go get blood drawn this morning.

It is now 10:49pm. So pretty much I stayed in bed all day after I got home from my blood draw. I have experienced great dizziness today, but pain was almost none, the only pain was what I felt this morning but even that's gone. So just dizzy dizzy right now. Am grieving today as I lost a dear friend and sister in Christ, Connie Mello. She battled cancer for the past year and yet the Lord graciously allowed her to hold her first grandchild the day before she passed. Little Johnnie was born on Monday the 17th, Connie went home today the 19th. God is good to have given her the desires of her heart. How I will miss such a sweet sister.

March 17, 2014

Woke up with the same pains again, headache, neck ache, should blades aching and pressure, shortness of breathe. No joint pains though. But I didn't have that dizzy feeling so I was able to move around and get chores done. So it is a better day, no numbness in my face today.

Still get very weak whenever I do something, vacuuming wore me out and my muscles get tired out so easily. The center of my back aches too and it feels better if I stand up. Oh my lymph node areas that were hurting yesterday hurt still in the morning but then it just vanished and I can tell it's not as big so they must have been somewhat swollen. Neck feels skinnier. Wish the rest of me felt skinnier! lol..It is 12:09pm right now, s I will update later tonight before bed time. Oh I did call my doctor today and will update what he says. I still think a herx shouldn't last this long. If that is indeed what is happening to me. But 3 weeks now going into not feeling well and so exhausted it's hard to do daily work etc and driving has been impossible.

It is 7:40pm. I did more today than I have done in a long time. My doc wants me to come in tomorrow so Jonathan will drive me there for an 8:30am appt. 2 and a half hour drive, fun fun....

Symptoms right now are sore muscles and weakness, no brain foggy feeling and dizziness and no headache right now. Even the pressure in the back of my shoulder blade area isn't there. I am experiencing lower back pain and have had several sharp pains in my left side, near my ribs. Hoping it's not my liver!

Still get that over exerted feeling whenever I do something active, like vacuum or walking up the stairs. But it sure has been nice today to not have the dizzy, heavy pressure in my head feeling. No heart palpitations today. And I don't think I had any ringing in my ears today.


March 16, 2014

Woke up this morning with a headache and shoulder blade area and neck hurting and lower back pain. Rubbed Pan Away with olive oil on shoulders and back, almost thought I wouldn't make it to church but within 15 minutes of the Pan Away I felt enough relief so got ready to go to church.

In the van I started getting light headed and shoulder and neck pain were coming back so Joshua rubbed the oil/Pan Away and gave me some relief again.

At church my left cheek was feeling numb again and I felt very light headed and dizzy. Felt very weak. Also had loud ringing in my ear during lunch, lasted only a split second but boy was it loud!

My ears feel kind of plugged and my lymph nodes in the neck and throat are sore feeling. Chest still feels a tad pressure and short of breath but no heart palpitations.

So another ailment day. Wish I could have a good day of no pain, no dizzy, no numb cheek.

I didn't get the joint pains today, heels started hurting some but went away.



March 15, 2014

The headache has gone away. Still have heaviness feeling in my shoulder blades and shortness of breath feelings. Also had heart palpitations all morning and a sharp pain in my left palm that keeps coming and going. My wrists started hurting some but then went away again. Don't have the bad body aches and am able to get right up from sitting to standing without cringing and being slow as a snail.

Rubbed Thieves oil on my feet around noon time. Started getting a achy pain radiating from my shoulders so I used Pan Away to see if it would help. Gave me some relief.


March 14, 2014

It is Friday morning, we usually go to minister in front of PP, it is very cold today. My symptoms so far today include very slight headache, feeling air hunger I think, air hunger is when you feel shortness of breathe so you feel like you have to gasp in deeply to get enough air in your lungs, been doing that quite a bit this morning. My heels don't hurt today. I credit it to my incredible girlies who gave me a nice herbal oil foot and leg massage last night before bedtime. My left elbow soreness is a tad worse than yesterday. Had a good ringing in my left ear for a few seconds.

Also in the middle of night I started sneezing like crazy, felt that hay fever coming on me. Thank goodness it subsided and I was able to go back to sleep.

Was doing pretty well in the early morning, went to PP but by noon time I was getting a full migraine headache which started with a stiff neck and I felt incredible pressure in my head, mostly right above my neck and skull area. It began to be so bad I was feeling light headed and nauseous. Also it produced some ringing in my ears. It is now 8:31pm and I still have the pain however it migrated down towards my shoulders and shoulder blades, making the pressure feel like it's in my chest and not just my neck.

Had very painful sharp stabbing pains in my left wrist today and some stabbing pains shooting in my feet and toes, but that all went away and didn't last.

It's hard to believe that just 2 days ago I could barely walk upright and everything hurt, then poof, it subsides....until the next flare up. Here's hoping for less bad days and more good days!

Got my starter kit from Young Living Essential Oils. So tried rubbing Thieves on the bottom of my feet, also used the diffuser with the Soothing oil.

March 13, 2014

So here goes my first entry to keep track of my symptoms. This is more for me and my family. It is highly recommended by many folks to keep track of herxing, good days, bad days etc. So this is where I plan on doing this.

I woke up this morning still feeling weak and very achy body and muscles and my heels hurting. However as the day progressed I felt a fog lifted and my pains subsided and I didn't feel exhausted. I actually felt so good I made my bed and took a shower and put make up on.

I cleaned the house and also cooked dinner with no help from the twins today. This was the first good day in a week.

It is 8:36pm and I am feeling a tad achy right now. Had some stabbing, shooting pains in my right foot and toes but that went away now.

My muscles still feel achy and hurts to use too much strength. Both elbows still sore from the recent flare up. Shoulder blades achy as well. Skin is itchy...bleghhh

NO HEADACHE! yayayaya!

I hope I feel well enough to go and plead to the abortion bound women at PP tomorrow morning.
---------------------------------------------------------------------------------------------