I'm Still Here and Still Fighting This Battle!

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 are 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. The oil really soothes and helps me to relax. 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 speech, forgetting sentences, whooshing, brain fog...I do have dizzy spells still but nothing like it used to be.

As far as current protocol, it looks like this:

Cefedenir twice daily
Clarithromicin 1 tablet cut into half, take half tablet twice daily
Minocycline twice daily
Pantaprozole one tablet in the morning
Probiotics in the afternoon.

Every night at bedtime I rub Thieves Oil to the bottom of my feet and around my neck.

So I am still here and still in this battle however I can truly say with all my heart I am encouraged as I am seeing the light at the end of this long dark tunnel I have been in for so many years! I know I still have awhile yet to go, my LLMD said I would have to be 6 months of absolutely symptom free before he would slowly wean me off any medications. So not there yet, but sure am closer!

I think of where I was just 10 months ago and I cringe thinking how sick I was, how much pain I was in and so much herxing going on I thought I wanted to just curl up and shrivel away. I do like to go back and re-read my Daily Journal here as it reminds me of where I once was and encourages me to see how much I have improved.

Sometimes I feel awful for others that I know with this same disease who don't seem to get any better with treatments. I don't understand why it works for me, even though it has been a tough journey, but others they never seem to get better. I even had to leave some of the Christian Lyme Support Groups I belonged too as I felt like I couldn't share my good news of getting better because so many are not getting better after, some folks, 10-20 years!

I am truly grateful to the Lord for getting me through this one step at a time. For directing us to the right doctor and for giving me such a wonderful, supportive family. My husband is so compassionate and so loving. I couldn't have endured so much without his constant care. My children are incredible. On my bad days they take over with cooking and cleaning. And my church family are always praying for me. I am truly truly blessed.

As I close this post, I am reminded of a beautiful sermon by one of my favorite preachers, CH Spurgeon called Beloved, yet Afflicted: Here's the ending of that sermon:

If Jesus loves you, and you are sick, let all the world see how you glorify God in your sickness. Let friends and nurses see how the beloved of the Lord are cheered and comforted by him. Let your holy resignation astonish them, and set them admiring your Beloved, who is so gracious to you that he makes you happy in pain, and joyful at the gates of the grave. If your religion is worth anything it ought to support you now, and it will compel unbelievers to see that he whom the Lord loveth is in better case when he is sick than the ungodly when full of health and vigour.If you do not know that Jesus loves you, you lack the brightest star that can cheer the night of sickness. I hope you will not die as you now are, and pass into another world without enjoying the love of Jesus: that would be a terrible calamity indeed. Seek his face at once, and it may be that your present sickness is a part of the way of love by which Jesus would bring you to himself. Lord, heal all these sick ones in soul and in body. Amen.

Looking unto Jesus, the Author and Finisher of our faith.

Donna

My precious new granddaughter Sierra

No More Cipro For Me!

My LLMD had started me on the new regime of Cefdinir and Ciproflaxin to treat the Bartonella in my brain. It has proven to be very effective as all my brain weirdness has subsided and I only had been experiencing slight hearing sensitivity.

However after being on it for almost a month I started noticing I was having flu like body aches. A symptom I do not wish to have again as that was one of my very first obvious Lyme symptoms. Since this new treatment was more focused on killing Bartonella I was concerned that my Lyme was returning again. So I put a call into my LLMD.

After hearing my concerns he said before we think the Lyme is strengthening let's take you off the Cipro as muscle pain and tendon pain is one of the rare side effects and since I have been one of his patients who tends to be sensitive to medications he wanted to test his suspicions that it was the med and not the Lyme. In the mean time he said I must always be on 3 different antibiotics so he put me back on Clarithromicin.

As soon as I was off the Cipro, I caught a terrible head cold/flu thing that gave me chills and fever and body aches and bronchitis. So it was very difficult to figure out if the body aches were in fact leaving. But now that I am over that I definitely do not have the body aches so that tells me once again my brilliant LLMD knew what he was talking about.

Since stopping the Cipro though my hearing sensitivity seems to be worse. I go in on Nov 12th to see my LLMD so I will ask him about it.

So another interesting lesson on the antibiotics!

New Bartonella Treatment and Neuropathy Medications

So after suffering for some time with extreme hearing sensitivities and brain weirdness which is common neuropathy issues, (dizzy, buzzing, zapping, Bells Palsy, facial weakness, eye pain, back of the ear pain, weakness in my right arm, heart palpitations, chest and rib pains, watery eye, droopy face, lightheaded, whooshy sensations, slow speech, slurring, emotional wreck with crying spells)

I went to see my LLMD and after reviewing everything he decided it was time to change up my treatment.

He said over the past 4 months he has been researching Bartonella and also he met with other Lyme specialists and he has some concerns about Rifampin, which is what he was treating my bartonella with.

So now my new medications are Cipro, Cefdanier (Sp?) and he has me on a neuropathy med called Gabapetin. I am still on Plaquenil too.

As of right now he said I am the only patient of his on this new protocol. Don't I feel special...haha..

So I am still battling Bartonella. Fun fun...I was on Mino and Rifampin for almost 4 months and it made me feel so much better but then I did the stupid thing, I stopped taking everything cold turkey, but within 10 days my brain stuff came back, slowly, but by August I was in full force and back on meds. He did say 14 days is usually how long it takes to get symptoms back if it's not dead yet. He was right.

So once again I am back on treatment and this time I will not go off. And this is going to take time. I have been on treatment for almost a year. My Lyme symptoms are virtually non existent..the neck pain, joint pains, weak arm and wrists, headaches, arthritis are 98% gone!

So once again I covet your prayers for this new medication, I don't want to herx or have an allergic reaction.

Discouraged and yet hopeful still.....Jesus my Hope!

It's so difficult living with an invisible disease. Day after day I live with symptoms not noticeable to most folks, mostly my hearing sensitivity issues and my brain weirdness as I call it. I'm exhausted and very emotional, crying episodes are more frequent now.

For weeks now I have been experiencing the dizziness, brain zapping, vibrating, buzzy sensations and facial numbness and slight Bells Palsy like symptoms of drooping feeling and my eyes feeling like so much pressure is on them that they are literally drooping closed. Slurred speech and the great efforts to speak sometimes. I feel like my brain has to work so hard to just get sentences out. I gasp for a breathe after I speak so many times as I feel over exerted. So strange these things.

I was doing so well just weeks prior that I am so discouraged that it all came back, full force in my brain this time. 

Yet I am still hopeful because I know the Lord provided us with a LLMD that knows what he's doing and he understands where I am at. And he really genuinely cares for me.

I called yesterday to let him know whats been going on since he started me back on Mino and Rifampin.  His instructions were to immediately get off Mino and Rifampin and start back on Lyme treatment of Plaquenil and Amox and Clarithromycin.  And he wants me to come in ASAP, not wait till my September 25th appointment. So I go in this Tuesday Aug 26th.

It's been almost a year since my diagnosis of Lyme Disease, and 10 months of abx treatments. Will this end? Will I be normal ever again? I just read this sad story of a lady who suffered and took her own life. Broke my heart! Her worst symptom is what mine is, hyperacusis, hearing sensitivity.

I am so glad I know my life here on this earth is temporal. I do look forward to a perfect body, no more Lyme. I hold to this hope. This is my only Hope. Jesus. I may never be 100% freed from this disease and I really am ok with it. I wish it weren't so, but the more I am sick, the longer I am sick, I am so grateful for my spiritual healing, that I am saved and redeemed by the Blood of the Lamb. I cant imagine going through this without the Hope of eternal Life through Jesus Christ. Knowing that this world is not my home, I have such greater joy to look forward too. Keeping my eyes fixed on the knowledge of my eternal home in glory, forever with my Savior.  

If you suffer from this disease or any other chronic illness and you do not know Christ you will be discouraged and feel it's hopeless. Turn to Christ! There is no hope without Christ! Your body may never be healed here on this earth. But more scary is if your soul would not be healed from the sickness of sin and death. Please please, I beg you, take the time to consider your standing with God Almighty. Please visit this website and read with an open heart. 

Back on Minocycline..Fighting Bartonella!

Well I was doing so well and still have no joint pains and headaches but I started getting more brain weirdness, buzzy, zapping, whooshing sensations, dizzy spells and lightheadedness...then the hearing sensitivity returned. I thought maybe this was just residual effects of die offs and candida stuff.

I also had not called my LLMD and spoke to him since I had quit cold turkey the antibiotics, so this morning I put the call in and waited to hear from him, thinking the entire time I AM IN SO MUCH TROUBLE!

But once again my LLMD proves to be the most compassionate, understanding soul. He completely understood my predicament with the financial strain of getting my monthly medications and all of Kayla's bills that keep flying in.

After discussing with him the improvements and then letting him know that I was having the brain weirdness, he said he is completely sure that I am still battling Bartonella as Bartonella attacks the neuro pathways and your central nervous system. The buzzing, zappy, brain fog and hearing sensitivity is all the bacteria still attacking my CNS.

The good news he was delighted to hear was my hemoglobin went from a low 8 to a whopping 13.5! I gained 5 units of blood which is remarkable!

However his concern is if I am not treating the Bartonella, it will once again go and feast on my red blood cells and I will go right back down to that low hemoglobin number.  And I do not want to be there again! I felt horrible!

So for now he said I can take one 100mg of the Mino a day, and a Rifampin every other day to help keep costs down. He said anything, even this low dosage is better than nothing as we still need to keep fighting this bacteria.

He's officially taken the focus off of Lyme Disease and now we are battling Bartonella which I have read is WORSE than Lyme! UGH!

"Babesia and Bartonella are not little addendums to Lyme disease, but are often far more serious than Lyme disease. Any physician who is not well-versed in these two killing infections perhaps should not be considered competent enough to treat patients with flea and tick infections. These infections do not circle around planet “Lyme” like small moons, instead, they are their own huge planets that cause massive consequences to the human body." Dr. James Schaller M.D.

So here I go, back on Mino and Rifampin, hoping to get rid of these symptoms once and for all! At least I am doing much better in many other ways so for this I rejoice and praise God for always giving us answers and directing us when we asked Him for direction. I found this website too that has info about other ways to treat Bart as Bart can be tricky to kill with abx alone.

Psalm 34:4

"I sought the Lord, and He answered me and delivered me from all my fears."

Stopped All Antibiotics! Candida Treatment Time!

What a scary time when I realized I had to make this hard decision.  To be completely honest much of my decision is financial. With Kayla's broken ankle and all the surgery etc the bills are flooding in and it's been overwhelming to say the least. We have no health insurance so you can imagine hat our bills are looking like, currently in the $20.000's!

Knowing we have to keep up with those bills caused me to realize the best thing to give up is the monthly prescription costs.

I have been doing re markedly well and I was able to take over a month of the Minocycline with no herxing at all! Third round was a breeze. So I believe with months of Rifampin and then 3 rounds of Mino, we have knocked out the Bartonella that was making me so sick from Feb.

As of right now I have no Lyme symptoms, no reactions to stopping all abx cold turkey. Today is day 5 of no abx.

I am treating candida overgrowth which I am convinced I have as I have a very bloated, pregnant looking belly and since starting abx I have gained 20 pounds. Candida overgrowth causes the SAME symptoms of Lyme so some of my nightly aches and pains I believe are candida and not Lyme. So no sugar or carbs right now and using powerful probiotics from Natures Sunshine. My eldest son and his wife are distributors
Here's a great place to read about candida overgrowth and it's symptoms.

I still am using my Thieves essential oil every night. I plan on adding oregano and Basil to my natural Lyme treatment when money allows.

So that's my latest update. I will continue to update as I live without abx for the first time in 10 months.  If you also have stopped abx please comment below your story so others contemplating this route can have other's stories to make their decisions. This certainly wasn't an easy decision for me, but 10 months of abx is a long time and I have had much relief from symptoms and like I said, I am not convinced any joint pains and other Lyme-ish symptoms are still Lyme, but candida at this point. Only time will tell and so my journey continues......to be continued......

Over a Month on Minocycline!

Wow! May 26th I started back slowly on Minocycline and now I am still taking 150mg a day and having absolutely no herxing or pain or anything, matter of fact I have been so well for over two weeks I almost feel healed of this dreadful disease!

Now I know, I am not going to jump and down and declare I'm cured, I know better, but I can't help but smile so big because I honestly feel almost normal. My last flare up was June 9th and that is in my daily journal.

I am so thankful I kept a daily journal as I can go back and read my journey and see how awful I was and how much better I have become. Feeling good for quite some time does cause one to forget the trials I just went through, so these daily journals have been great.

I seriously doubt I am cured but it sure is encouraging after herxing so bad on Minocycline, and here I am a month into Minocycline and I feel wonderful.

Much of my symptoms I experienced was also due to low iron. The itchy skin, metallic taste in my mouth, extreme fatigue was all from low hemoglobin. Since starting iron tabs those symptoms are gone!

Also some of my joint pains etc could be related to candida which I am pretty sure I have an overgrowth of candida that I need to start treating.

I started exercising again on my treadmill because I felt so good. However unlike before, I could jog for 3 miles and not feel anything, but right now when I do fast walk or lightly jog, I do feel it in my body as I think I have been so weakened by Lyme that it will take time to build these muscles back up again. But I am ready for the challenge!

So almost one year into abx therapy and I am finally feeling good! My LLMD said he feels that I would have to be on abx for at least a year so it's coming to that time. I hope to be off the abx in September when it is the official one year mark, but we shall see.

So that's it for now folks until the next update!

Round 3 of Minocycline and Low Iron Discovery

After 2 attempts at treating my Bartonella with Minocycline and having horrible herxes with it, today, May 26th, I start back very slowly.

My schedule looks like this:

May 26th, Mon, start with a 50mg tab once, then Wednesday, then Friday. That's it for this week.

June 2nd, take a 50mg once daily everyday.

June 9th, take one 50mg tab twice daily.

And that's it this time! The most I will take is 100mg a day. My LLMD feels that this is probably all I can handle for now, and he will watch me closely and if he feels I can get to 200mg down the road then that's what the goal is eventually but not now.

Another new trial I am having is the recent discovery of my dangerously low hemoglobin and iron and shrinking red blood cells. On March 19th I had my blood drawn and when my LLMD received those results everything looked fine...or so we thought!

Then on May 19th I had another blood draw which show my hemoglobin was at a 8.2 and my iron an 18, and shrinking red blood cells.
A normal hemoglobin is 12-15 and iron levels should be anywhere between 50-175.

My LLMD went back to the Mar 19th results to compare the results only to find out the lab had only sent half of the results so he never saw my CBC which would have shown that back in March my hemoglobin was at 9.3. So since March to May I have lost a unit of blood. Not good! He was furious as he could have been treating me all this time.

So now I am on Iron pills and on a journey of tests to make sure I am not bleeding internally somewhere. I have an OBGYN appt for June 19th, then we shall go from there.

I did find out info about low hemoglobin and low iron and shrinking red blood cells. My dear friend whose granddaughter suffers Lyme, they shared with her that Bartonella and other co infections, Babesia, live in your red blood cells and actually feed on your iron levels! UGH! Go figure. She said I needed to be careful to not over do iron stuff as I could actually be feeding the bacteria. My LLMD has suspicions of Babesia, mainly because of my recent test results.

Here's some info from other websites about this.

A New Tick Borne-Parasite That Invades Red Blood Cells-Babseiosis

Article describing how Bartonella burrows in red blood cells

Babesia and Low Hemoglobin

So this is the latest in my Lyme journey and I am hoping for better results in May when I do my next blood draw.

For now I will start the Mino and let's start killing this bug!

Minocycline Herx yet Again!

You can read my original Minocycline herx story to better understand this post.

I share this so that folks who are starting their treatments can get an idea of what others have gone through and what reactions they may have experienced. Everyone is different but some herxing is the same so it's very helpful to read others testimonies.

 So here we are again.....same story, not quiet as painful as the last time but herxing once again from Mino.

Here's the run down of what happened.

I shared here, about the change in treatment as we realized I was battling a co infection called Bartonella. This is when I was introduced to Minocycline.

Since I herxed really bad the last time with the Mino, my LLMD wanted me to start back slowly after our trip to Texas. So on April 23rd I took my first 50mg dose. I did 50mg for 4 days, then 100mg for 7 days then last Sunday I did 200mg increase, which was the last increase.  Now I was doing pretty good even on the 100mg, not realizing the restlessness and agitation I was feeling all along was indeed a herx. I just was dealing with it hoping it would go away. I felt so fidgety and it was hard to sit still sometimes.

Monday I was fine, even drove to NH and did an all day shopping trip. But by night I felt woozy in the head.

Tuesday felt fine during the day, drove to piano lessons, but by evening I felt woozy in the head.

Wednesday daytime, felt fine, but by 5pm I was spacing out. I was groggy feeling, lightheaded, trouble moving and speaking. No pain involved but just almost drunk feeling. Was so hard to stay awake and attentive for our Wednesday night prayer meeting we hold at our house. Felt bad for my friends that they had to see me like this. Nausea started at this time.

Thursday again felt fine during the day except for nausea, felt like morning sickness, but by evening I was spacey again and groggy and sleepy, pressure in my left side and my left side of my face started feeling that parathesia (paralyzed droopy sensation) feeling. Nausea was horrible.

Friday morning I woke up exhausted as all night I was so sick to my stomach it was hard to sleep. So I called my LLMD. 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.

He believes in time, after we kill more of the bacteria off, that I might be able to handle a higher dosage but for now he is keeping things at a low dosage because of this herxing again.

Herxing is a clear sign that the bacteria are being killed off, so in a sense it is good, however too much herxing can lower your immune system because it takes such a toll on my body. 

So Round 3 of Minocycline for me! Yay! NOT!

Battling one day at a time! Looking to the Lord for daily strength and endurance, with all joy knowing He is walking with me through all of this. 

11 May you be strengthened with all power, according to his glorious might, for all endurance and patience with joy, Colossians 1:11

Full Moon and Lyme Disease

Okay I was never convinced about the whole discussion on full moons and flare up of symptoms, but this is the second time there was a full moon and I woke up with flared symptoms.

Last night we had a full blood moon, lunar eclipse and my wrists and elbows are throbbing! Last time I had it this bad it was a full moon too!

Here's some interesting links about this.

Full Moons and Their Mysterious Affects On Those With Lyme Disease

Full Moons & Chronic Illnesses

Full Moon and Lyme Disease

Is this possible or is it just a coincidence that many of us Lymies seem to have flare ups when there is a full moon?  The mysterious illness continues to be so mysterious...................................and we continue to fight it!

Blotches and Blotches and Hey...there's another Blotch!

I've been told that getting rashes or streaks that look like stretch marks is a common sign of co infections.

Since I started the new co infection antibiotics I have definitely seen the appearance of big red dots and little red dots. Some say it's bartonella..well surprise surprise, I am being treated for bartonella so maybe thats what all these are.  Here's a few pics I tried taking with my IPhone today...my face ones are a tad harder to see but they are there and they itch! 

Biggest red blotch on my right leg, been battling this one for weeks since starting treatment. Came on suddenly as bright red dots and got bigger and bigger, almost looked like a mini bullesye for awhile. excuse the hairy leg, hahaha...being half Okinawan makes for less than 24 hour hair after shaving... :p

New red blotch started a few days ago and getting bigger on my right upper thigh.

New red dot under my right knee.

I have several red dots on my face that itch. No they are not pimples...I don't have pimples usually, this is a recent thing and boy do they itch sometimes.

A new one on my neck. Itches too. 

The Glimpses of Lyme...

So how does one live with a very real living organism that loves to do damage to your body? It's invisible, we cannot see it. There's usually no external signs that make it obvious. 

Oh sure sometimes it shows itself in rashes or itchy red blotches, but most of my outward evidences with Lyme have been my tired eyes, the dark circles from lack of sleep, the hunched over way I walk in the early morning.
Just here at home people can see it, but once I am out in public, I put make up on to cover the dark circles and tired eyes, I walk upright and slowly.

My red blotch...still here and its been a month.

However, everyday there are little glimpses of Lyme...

• Grabbing my knee as it shoots pains while I walk upstairs..
• Rubbing the inflamed elbow as it throbs with pains
• Blinking to try to help my blurry vision
• Struggling to find the words to finish my sentence
• Rubbing on oils to relieve headaches
• Dizzy, dizzy, dizzy
• Too weak to pull the laundry out of the washer
• Numb hands and fingers (this is one symptom that has completely cleared up since treatment!)
• Brain fog (a very weird sensation that is hard to explain but your brain area literally feels whooshy and you react very slow)
• Sore heels
• Sinuses acting up
• Ringing in my ears
• Sound sensitivity
• Fatigue
• Neck pain
• Migrating pains, today my elbow, tomorrow my knee, oh it's in my head today, wait it's in my wrist now...rolling rolling rolling, keep them buggies rolling....

Now many will say, "but these could be anything".

True..those symptoms can be other things, but my daughter and I have Lyme.

And these are some (not all) of the everyday glimpses of Lyme in our life. 

Kayla battling severe neck pain from her Lyme 

Psalm 40:16-17

"But may all who seek You rejoice and be glad in You;

may those who love Your salvation say continually, "Great is the Lord!"

As for me, I am poor and needy, but the Lord takes thought for me.

You are my help and my Deliverer; do not delay, O my God!"

7 Weeks Antibiotic Treatment Was Not Enough! Kayla's Lyme Journey Continues.......

Click here to read about Kayla's Lyme journey.

So we thought we were done, that we had killed this bug that so violently showed itself in Kayla last July, 2013. When we first found out she had Lyme she was prescribed Doxycycline. Then one week later was changed to Azithromicin 250mg two pills daily plus Amoxicillin 2 times daily for 7 weeks.

Night before last I was awoken at 3am by Kiara as she said Kayla was in pain and needed me.

I rushed to her bedside to discover that she was in excruciating neck pain, couldn't turn her neck or her body for that matter. I check for fever, none, felt around her neck area and there was clearly a swollen gland or lymph node. But no other signs of anything else.

Late in the morning she was able to slowly get out of bed and she came downstairs where she laid on the couch for most of the day. I applied my oils (Pan Away and Peppermint) and also had a heating pad on her neck.

At dinner time as we sat down to eat I looked over and saw redness on her neck. I looked more closely and I gasped! Is that a bullseye?

Jeff saw my expression and asked what was wrong and I said calmly, I think I see a bullseye. His response was,"No you don't, you would be more freaked out". He didn't realize I was trying to not freak out as I didn't want to upset Kayla. 

But sure enough he saw it too.

How can this happen? We thought she was cured and for 6 months she has shown no signs of Lyme.  

"Recurrent Lyme Disease

Despite previous antibiotic treatment, Lyme disease has a propensity for relapse and requires careful follow-up for years. The data suggest that failure to eradicate the organism may be the reason for a recurrence of symptoms. Early and aggressive treatment with antibiotics is indicated for recurrent Lyme disease. The ultimate impact from retreating each episode of recurrent Lyme disease is currently unclear."

**ILADS Guidelines for Treatment

Also you can watch a recent news report video about how antibiotics don't always kill Lyme.
News report in the Poughkeepsie Journal

So Kayla is now back on intense antibiotic treatment and this time it will be MUCH LONGER!  

So CDC, tell us again that Chronic Lyme doesn't exist! Prove to us that Kayla has post Lyme syndrome and it's all in her head! Did we draw that bulls-eye on her neck? 7 weeks wasn't enough to kill this bug yet the CDC says that the 7 weeks wasn't necessary for treatment, that 4 weeks would have killed it! Wrong wrong! How many more people will continue to believe the CDC guidelines and let more and more people be sick and left untreated? 

HYPERACUSIS AND LYME DISEASE

PLEASE DON'T SNEEZE THAT LOUD! Oh don't bang the dishes in the sink pleeease! It's so loud!!! My head vibrates from the sounds!

What is going on with me? Why are everyday normal sounds making my ears and head go crazy? It's like someone turned up the volume in the world around me!

The condition is called Hyperacusis and is a wonderful Lyme symptom.

**Lyme disease patients can experience an extreme sensitivity to sound, also known as auditory hyperacusis. In some patients it is limited to louder sounds, but in the more severe cases "ordinary" sounds can be very debilitating. The impact can be felt throughout the body, and this condition can affect every aspect of daily living. Patients can experience heightened awareness and an inability to tolerate conversation, running water, page turning, the humming of electronic devices, other people's breathing, etc. These normal everyday sounds become painful and unbearable, and as a result the individual's ability to leave the home is greatly limited. Patients may also experience an increased startle response and an "electric shock" type feeling.

Sounds can also induce dizziness, and this is called Tullio's phenomenon or audiogenic seizure disorder. According to Jenifer Nields, MD, "This peculiar short-circuiting of the inner ear's auditory and vestibular functions is known as the Tullio phenomenon. This phenomenon has been deemed pathognomonic for syphilis (43) but, as it appears, can occur in Lyme disease as well (41), and thus provides one more example of the "new great imitator," Lyme disease, imitating the old "great imitator," syphilis (1)." (Psychiatric Quarterly, Spring 1992). Vestibular Hyperacusis can also affect the autonomic nervous system.

Sometimes another central auditory processing disorder, tinnitus (buzzing or ringing in the ear), can accompany hyperacusis. Lyme disease patients can also experience sensitivities to light, smells, taste, touch, motion and/or temperatures.

**Taken from Lyme Info

Minocycline made me HERX!!

As I shared in my last blog entry my LLMD wanted to start me on new meds to start killing the co infection bartonella. So I was put on Minocycline 100mg. I started it on Wednesday and by Saturday I was in a full blown herx. I woke up in the middle of the night with the most excruciating TMJ pain on my left side and headache. I felt such pressure on my brain and neck. I thought my head was going to explode.

We had to head to MA to my dear friends funeral service, we were also Live streaming the service for the family so I forced myself up and headed over. It was an 3 hour drive there and back. Agonizing! 

The TMJ pain was so severe I took Excerderine and Advil out of desperation. it did nothing! 

Sunday morning the TMJ pain was GONE! Just like that! But the intense pressure in my head had escalated and the dizziness was overwhelming. 

I decided to look up side effects to the Minocycline and I did find that there is a condition called IIH (idiopathic intracranial hypertension) and Minocycline was one of the drugs that had caused this in 2% of folks.  But my pharmacists paperwork that came with my meds had nothing about this condition.

So I did the no no...I believed what I read online and stopped taking the Minocycline and I waited till Monday morning to call my doctor.  So I am learning how to be a good Lyme patient.....my LLMD is so kind and patient with me. When he called me Monday evening the first thing he did was scold me for not calling him on Sunday morning. Then he scolded me for believing the internet and not the pharmacists paperwork. He joked and said we know if Donna doesn't go to church on Sunday then we know to call 911...he's funny. 

He said this was a classic herx reaction, the TMJ pain that disappeared as suddenly as it came on was herxing, then the inflammation has no where else to go but in my head and that's why I felt such pressure in my head.

So he changed my schedule for the medication. Instead of starting with the Minocycline, tomorrow I start the Rifampin, then when I get back from TX I will start the Mino again and see how I do. I'm scared to try it again but he's hoping that the Rifampin will start killing off the bug so next time I won't get such a violent herx. Here's hoping!

I did update my Daily Journal with all this. I even put pictures. Don't scream...I look terrible! lol!

So lessons learned:

1. Do not change what the doctor has instructed until you talk to your doctor.

2. Google can give us way too much info that doesn't apply to us even though it makes sense.

3. Pharmacists paperwork is not to be thrown away and never read. READ it to find out side effects etc. If it's not listed on there don't assume Google will be the next step.

4. My LLMD is on call 24/7! I am not bothering him, he emphasized this many times on the phone last night. If I have concerns CALL HIM ASAP. Don't wait.

I am learning!!  Here's a little Lyme humor.

Co Infections and new treatment for me. Yippeee.....blegh

After a really bad few weeks of ups and downs, more downs than up, out of desperation I called my doctor and told his secretary all my symptoms and my concerns. Later that afternoon she called and said he wanted to see me at 8:30am the next day...gulp..it's a 2 1/2 hour drive from here!

My son Joshua didn't have to work so he volunteered to drive me there along with his wife and my adorable grandson, Nathan. This is the adorable face I stared at on the way there.

To keep this entry short, when we arrived at my doctors office I started getting a really bad headache, which within 30 minutes became a full blown, right side of my head migraine. I wanted to pass out I felt soooo bad. But thankfully my doctor got to see it and how I was reacting to it. Joshua did most of the talking to my doctor so that was a blessing. My doctor has for some time suspected a co infection called Bartonella. I have so many symptoms of it with the sore soles, red bumps that appear and itch then disappear, headaches, dizziness, chest and rib pains. But up until now he was focusing on the Lyme itself. Most Lyme patients do have co infections. Read here: Lyme Disease Co-Infections 

Since I have gone downhill so suddenly after feeling relief for a bit after starting treatment, my LLMD highlighted all my current symptoms and has now started me on a new treatment against the co infection Bartonella.  My two new antibiotics to start fighting the Bartonella are Minocycline 100mg 1 capsule twice daily and Rifampin 150mg 1 capsule twice daily, and he added Ranitidine 300mg to take at bedtime for my stomach. I have to gradually wean off the Clarithromycin, will be done taking those next week.

I also have to do monthly blood draws. Here's my first one today. I look wonderful don't I? NOT! I feel awful, but I am still fighting hard! Pictures compliments of Abraham! 

So another new round of antibiotics, and new stomach meds, we shall see how I do. Will keep updating. If anyone is interested I do keep a Daily Journal here in a separate page that helps to keep track of my daily symptoms.

I appreciate your prayers as I start this new treatment. Praying I don't herx and that I start feeling some ups!

I loved the end to my C.H. Spurgeon devotion this morning. I pray that the Lord give me the faith to endure and to believe His promises. Without Him I can do nothing!

O, then, Christian, watch well thy faith; for with it thou canst win all things, however poor thou art, but without it thou canst obtain nothing. "If thou canst believe, all things are possible to him that believeth." 

Herxing.....a most unpleasant experience

I started treatment in late September 2013. Over the next 2 months I would slowly add a higher dosage. My LLMD warned me about the herxing stage. I didn't have a clue what herxing was.

Here's a great explanation taken from Chronic Illness Recovery Website.

This phenomenon is known as the Jarisch-Herxheimer Reaction and is often referred to informally as herx or herxing.

Herxing is believed to occur when injured or dead bacteria release their endotoxins into the blood and tissues faster than the body can comfortably handle it. This provokes a sudden and exaggerated inflammatory response.

The first week I was on treatment went just fine, I didn't feel anything worsening, in fact within days my finger joints went pain free. I was so excited! I could actually bend my fingers with no pain! I thought wow, that was fast! It's all up hill from here! NOT!

Week 2 my knee joint pains were subsiding, however at night my body would be in so much pain. Only at night though, full body aches that made it hard to sleep, but during the day I felt fine.

Week 3 my heels hurt so bad that I could barely walk on them. My dear friend, Pennie, bought me gel heel pads and new slippers and heel pads for my shoes that really helped alot. This heel pain lasted for another week and went away....until Feb.

In November I was hit with extreme hay fever...I never have hay fever in Nov! It was so bad and agonizing, the worst hay fever ever. Nothing helped, I got no relief. Finally out of desperation I called my LLMD and he told me to take Allegra. That helped some but it didn't go away completely.

January 2014 I felt pretty good, I was still having occasional joint pains and headaches, but I was truly seeing improvements after so many years of suffering. At this point I started having migrating joint pain that would go to my wrists, this was a new symptom for me.  The end of Jan I had my 4 month appointment with my LLMD and he was encouraged to know I was handling everything just fine. So he said lets just keep doing what we're doing. I was still having some hay fever flare ups so he prescribed a nasal steroid spray which gave me relief. He was encouraged to know I was herxing as that definitely shows you are treating the Lyme correctly.

Feb 7th 2014, I woke up with my right side of my head hurting. I can tell a Lyme headache from a normal headache. I can take Excederine and get rid of a normal headache, however nothing touches a Lyme headache. This morning I tried taking Excederine, then I tried Ibuprofen, the headache was getting worse. It was in the back of my skull, where my skull and neck meet, I could feel it was inflammed. This lasted 2 weeks with my head hurting, my right cheek went numb and tingly. Then as soon as the headache left my left elbow was inflammed and hurting so bad. In all these years my left side was never attacked, but now all of a sudden my left side was being targeted.

I kept having different symptoms, painful nights, painful elbows, painful wrists, then one day I felt great! Whoo hoo! The herx is done! Or so I thought....the very next day I woke up and could barely walk on my heels again. My entire body felt weak and my muscles felt over exerted. I couldn't even pull my comforter up as I had no strength in my wrists.

Everytime I got up from sitting down it would take a bit to straighten my body out and walk normal. Everything hurt.

This is where I am today, although today has been a better day..so much I took this pic and sent it to my husband with this text: "I feel good so far today! I even put make up on!!"

I know my herxing days are far from finished. But I press on, one day at a time...listening to my body, resting when I need to, and now I have made this blog to also help keep on track.

So this herxing is normal, and it can be a good sign that things are dying off, so I must stay strong and encouraged. But I also have to learn how to detoxify and take care of myself during this herxing stage.

God is always so good to give me just the right scriptures too when I need them. Here's what I read this morning. My foe is Lyme. God is turning my mourning into dancing. He has answered my cries for help, He showed us who this foe is, and I know He is delivering me.

Psalm 30

English Standard Version (ESV)

Joy Comes with the Morning

 I will extol you, O Lord, for you have drawn me up
and have not let my foes rejoice over me.
² O Lord my God, I cried to you for help,
and you have healed me.
³ O Lord, you have brought up my soul from Sheol;
you restored me to life from among those who go down to the pit.^[a]

⁴ Sing praises to the Lord, O you his saints,
and give thanks to his holy name.^[b]
5 For his anger is but for a moment,
and his favor is for a lifetime.^[c]
Weeping may tarry for the night,
but joy comes with the morning.

⁶ As for me, I said in my prosperity,
“I shall never be moved.”
⁷ By your favor, O Lord,
you made my mountain stand strong;
you hid your face;
I was dismayed.

⁸ To you, O Lord, I cry,
and to the Lord I plead for mercy:
⁹ “What profit is there in my death,^[d]
if I go down to the pit?^[e]
Will the dust praise you?
Will it tell of your faithfulness?
¹⁰ Hear, O Lord, and be merciful to me!
O Lord, be my helper!”

¹¹ You have turned for me my mourning into dancing;
you have loosed my sackcloth
and clothed me with gladness,
¹² that my glory may sing your praise and not be silent.
O Lord my God, I will give thanks to you forever!

Gunner's Battle with Lyme-By Kiara Hebert

                                                      

                                                This is Gunner

Sunday, February 16th was when we noticed something was wrong with Gunner. Before we left for church, he was his happy normal self. I remember that morning he had jumped on my bed and woke me up, acting crazy as he usually is in the morning. When we got home from church, we noticed that he wasn't at the door to greet us like he always does. When we called him, he came from the upstairs, and as he was walking down the stairs, we noticed that he was limping. We didn't think much of it though, we just thought that maybe he had hurt himself playing in the snow with his sister, Patience. A couple hours later, he was limping even more, and it was getting harder for him to walk. By bedtime, he couldn't walk up the stairs, so Dad picked him up and brought him in the room to go to bed. The whole night he was whimpering and crying. By morning, he could hardly walk, so Dad had to carry him down the stairs. It was hard trying to get him to go outside to go to the bathroom. When we let him out, he would just sit on the porch because it hurt him to much to walk.

As the day went on, he was getting worse. He wouldn't eat and hardly drank. Later in the afternoon he was completely lame. If you tried touching his front paw, he would yelp and pull it away. He felt hot and feverish.

Mom called our vet, but we couldn't get an appointment until the next day. That evening, his back legs started hurting him. At around 8:00, he was so bad that we  took him the emergency vet hospital. We had a hard time trying to get him in the car. Every time we'd try to move him, he would yelp and cry.

After we finally go him in the car, we drove to the emergency vet which was about 30 minutes away.

  
When we got to the emergency vet, they brought out a stretcher and carried him in to the examination room. After we signed in, we waited in the waiting room for about two hours, then they asked us if they could do a Lyme and other tick borne illnesses test. Later we were told that Gunner had Lyme disease and another tick borne illness called Anaplasmosis, which is very common in dogs. They wanted to do a blood test on Gunner, as Anaplasmosis will  cause kidney failure in dogs if not caught fast enough. The blood test came back with good results, we had caught the Anaplasmosis fast enough before it affected his kidneys. They injected a round of doxycycline and gave us a weeks worth of pills to give him. We brought him home, and that night Mom and I slept in the living room with him. In the morning we brought him to his normal vet, where his doctor gave him a checkup and his second dose of doxycycline. They kept him until late afternoon.

When we picked him up, he was walking very slowly, but he still needed help to stand up.  That evening, he would go outside with me and walk around, and was definitely feeling better,  but he still was not normal.

The next day, he could stand up a little on his own, and would eat a little. 

Later, he was doing much better.

A week later he was perfectly normal. You would never have known that he was so sick the week before. He was on Doxycycline for three weeks and recently took his last dose.