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