Posted 8/4/2019 3:12 PM (GMT -6)
So, I’ve reached the point in my healing journey where I’m genuinely perplexed on which path to take. I started this journey in Sept of 2017 when I had a near-fainting episode while working, and within 3-4 weeks I had already seen an LLMD, tested positive on Western blot for Lyme, and began treatment. My symptoms were and have always been neuro-psych: anxiety, fatigue, POTS, no appetite, with some mild depression and emotional lability here and there. No real pain to speak of except for some headaches and neck stiffness. I began with Doxy/Zith and pulsed Tindamax for 8 weeks - by week 5 I had no symptoms and figured I had crushed everything.
Within 2 days of stopping abx my symptoms returned. I then had Igenix testing done for Lyme and Babesia and received positive Lyme and Ind for Babesia Duncani. My protocol was switched to mepron, Zith, and Tetracycline (which I swapped back out for Doxy after a week or two). This lasted about 2 months until I nearly passed out while working - had to quit mepron and didn’t take any abx for about 4-5 days until I recovered - I’ll never touch mepron again in my life. I felt great after 5 days, and then was hit with the same near fainting episode again while driving. I saw my LLMD (who I had lost faith in by this point and made an apt with a new LLMD but had to wait another month) and requested Igenix testing for Bartonella/Lyme/Babesia. I feel so horrible at this point that I am unable to drive, my wife and family are worried sick about me, and I am being driven around by my sister (I’m a home care health clinician) and only working a couple hours a day. I’m pale, look sickly, and have lost weight (I’m already a stick to begin with). I requested to swap doxy for Minocycline and resumed Zith. Within a day or two I had textbook herxing and figured I was on to something.
Just prior to my new LLMD appt in April 2018 I got my Igenix results that were Ind for Lyme, negative for babesia Microti and Duncani, and super duper positive for Bartonella Henselae. Bingo! My new LLMD (who uses MDL for his testing which is covered by insurance) puts me on Rifampin with the Minocycline which I take for about 8 weeks - for the first few weeks I can feel the Rifampin working as I experience inflammation constantly in different parts of my body. I continue until my body can no longer tolerate the Rifampin after the 8th week - again feeling like i took another dose that I would pass out. My new LLMD states the time for Oral abx has ended and puts me on weekly Bicillin LA injections (with plans to slowly ween off them) as he has found it to be successful in preventing Lyme relapse in many of his patients. My MDL results are all negative (bart, Lyme, babs) and on July 4th, Independence Day, I begin that treatment and by August I’m 100%. I don’t think I’ve ever felt as happy to be healthy, working out, and living a normal life. The shots are spaced out to 10 days, 14 days, and finally 3 weeks apart. In October I experience a mild return of symptoms that lasts about 2 weeks and resolves on its one (I was incredibly tempted to take abx again during this time, but that would negate any benefits from the Bicillin).
Alas, near the end January of this year I slowly begin to experience a return of symptoms - anxiety, fatigue, weakness, parasthesias etc. It’s a heartbreaking feeling to think you’ve won and then know you’re going back into battle. I figure it’s a relapse of Bart so I start taking Minocycline, see my LLMD for MDL testing (and my old LLMD strictly to get Igenix testing, but only did it for Lyme and Bart) and await results. However, the Minocycline doesn’t work as planned, I experience weird symptoms like coldness in my extremities and testicular pain after about 2 weeks and have to stop.
My MDL results come in at the beginning of March, negative Lyme by 3 different methods but Positive IgM for Babesia Microti. ***?! How could this be possible I think to myself, I’ve never once tested positive for babs (other than the 1 indeterminate Igenix for Duncani a year ago) and never had any of the classic symptoms of night sweats, air hunger, etc. My Igenix testing comes in - negative for Lyme, but positive IgM for Bart Vinsonii and Genus(spp) (their new Bart IFA tests for 5 species and they consider it positive if you have 2). The Henselae that caused all my trouble is negative. I still am not quite sure what to make of this result, but more on that in a sec.
I begin taking Malarone and Zith for 120 days, and within a couple weeks im feeling 95-99% better. I’m retested via MDL about halfway through and everything (Lyme, Bart Henselae (MDL only tests for that 1 species) and Babesia Microti) and they’re all negative again. During this time my LLMD and I devise a plan to treat Bart with doxy and bactrim as a precaution after the Babs is done. I finish 135 days of treatment, give myself a day or two off, and began the Doxy and Bactrim DS this past Sunday 7/28. By Thursday, I am debating going to the ER due to hypotension and weakness and abandon treatment.
I was supposed to see my LLMD the week prior but I am emailed by the office and told he is out indefinitely with an unspecified medical issue that requires surgery. I suspect some of you here on this board see him - I hope he is able to return. His associate is an APRN and naturopath who I am not confident in, and if I’m paying the cash price they charge (it’s expensive) I want to see him. Thus, I am kind of on an island right now with who to turn to. I have appointments with my old LLMD for next week and the APRN 2 months from now (when we’re supposed to assess the treatment which I’ve already had to abandon).
If you’re still reading, thank you! I know it’s a long post but that summarizes how I got to where I sit today, trying to decide which path to take. I have herbals available, I have abx available, and my usual arsenal of supplements. I’m debating what is the right course for me to take. I know my old LLMD will want me to take abx (doxy and Zith) for Bart. I still plan to see him and shell out the cash to have the Igenix testing for Bart and Babs. I have concerns about the accuracy of some of these tests, about whether it could be medication side effects or long term antibiotic use that have kept me from getting to 100%. I’m at almost 2 years of treatment and have hit 100% before! If I go back on AbX, the ones I can’t tolerate now are Mepron, Rifampin, and Bactrim - the lack of using the latter two putting a big wrench into attacking Bart if that indeed is still lurking.
Perhaps it’s the large quantity of supplements that I wasn’t taking prior to getting sick. Maybe i need my own immune system to kick in or let my body try to return to its natural balance. Now that I’ve had a few days post bactrim to recover I feel decent enough symptom-wise except for anxiety. Now the question, what to do? I did start taking Woodland Essentials Houttonyia, Sida Acuta, cats claw, and Japanese knotweed yesterday and am leaning towards trying to just do the herbals and wait it out for both the Igenix testing and to see how I feel and if any symptoms of Bart/Babs return.
For those of you who took long term antibiotics, how did you feel when stopping? For those who use herbals, any others that I should add? (Cryptoleptis? Artemisia?) I basically would want to address Bart and Babs as I am confident that Lyme is eradicated (plus, there will be the crossover treatment of Lyme with many of these herbs anyways even if I’m wrong). Sorry for the long post, but appreciate all of you who respond and try to help each other out on here.
Last bit of info is my supplement list:
Magnesium (optimag neuro) 200mg
L-Theanine 100mg BID
NAC 900mg BID
vitamin B complex
Curcumin 500mg BID
Omega 3/fish oil
Multivitamin (Herbalife) BID
Milk Thistle 250mg as needed
liposomal Glutathione 500mg BID
Alka seltzer Gold
I definitely am going to try and ween down the dosages and eliminate a few of these supplements if possible.
The biggest reason for this thread, other than trying to find the best course to return to full health, is that my wife is 10 weeks pregnant with our first child and Due March 1st and I absolutely cannot be incapacitated or dealing with this if I can help it. Time is a very valuable commodity to me and I can’t waste it. Thanks!