A love/hate story with neuropathy

Hi guys,

I've been reading this forum for quite a bit but I haven't participated much, so I wanted to introduce myself and tell you about my case, in case there is something new or useful to you and also to see if you have any ideas that could help me with it.

Diagnostic

I'm 36 years old, have congenital lyme, bartonella, babesia and anaplasma tested positive by Arminlabs Elispot. At that time I also had high titters of EBV. My main symptoms are joint and muscle pain, tight ribcage, food intolerances that developed during the last 4 years leaving me with only a few foods to eat (I do a paleo diet close to carnivore) and all imaginable GI issues.

Treatment

I started treatment on february 2023, took mino, azithro and pulsed tinidazol. It stopped the GI issues and lowered the inflamation a bit, but not much.

After a couple of months I tried going for rifabutin (+ clarithro), as I thought my main symptoms were driven by bartonella. I took the drug for one month until I had a bad reaction to it (my skin looked red and I was ithchy) so had to stop. Changed rifabutin for bactrim and went on for a month or a bit more, until the GI issues came back. Seems like that combo of two drugs (plus biofilm busters, suplements and so on) wasn't enough to control everything.

Neuropathy starting

Then I changed to fluconazole + minocycline. The beginning was positive. After one week I could feel my ribcage expanding thanks to fluconazol, something I didn't remember happening to me in a long time. That went away within a week. Still, I continued treatment as expected. The problem was that after less than I month I started having some sort of neuropathy in arms, legs and head that didn't allow me to sleep and made me feel very unconfortable.

Looking for alternatives I ended trying fenbendazol and albendazole (one first, later the other) plus minocycline. They gave me neuropathy too. It was the same sensations as with fluconazole, burning in nerves of arms, legs and head (mainly forehead, but sometimes around the whole brain). So I had to switch back to minocycline and clarithro.

After some time I managed to get nitroxoline (september 2023), which was a pretty good addition to the last combo, and went on with it until the last week. I'll explain why soon. In the meantime, I've tried other abx (one single try only), such as triclabendazole, praziquantel, dapsone and pyrazynamide to see their effectiveness, and all of them gave me some herx but specially neuropathy, which lasted several days until it went away.

In december 2023 I tried to switch clarithro for septrim, and it gave me neuropathy. At the end of the month I tried loratadine and it gave me, apart from a little herx, neuropathy. Since then, I got the flu and nitroxoline started giving me neuropathy too, so I had to stop it.

Continuous neuropathy with abx

Right now I have neuropathy with every abx that hit borrelia or bartonella, thought very small with minocycline and clarithro. The only medication that doesn't give me neuropathy are the ones that hit babesia. I've tried atovaquone (which did nothing), allicin and artesunate, which are decent, ivermectin since september (pretty good) and tafenoquine since november (pretty good too).

What to do

Seeing this tendency, I have to discover what the hell is causing this neuropathy. So far, I’ve ordered some blood tests to check my viral status (in early 2023 I had very high titers of IgG, 1110 U/ml, when > 20 is positive), in case there is something awake causing issues, and for autoantibodies. I have tried famvir once, it has given me neuropathy, but after a few hours I felt better, less fatigued and with my mind clear (even with the neuropathy there), so probably there is some reactivated virus, we’ll see.

Another option that I will try is to stabilize my immune system, which may be wreaking havoc in my body. I have started today LDN (0,5 mg so far) which has made me feel extremely fatigued for some hours, but now I’m feeling better. I also have rapamycin on top of my head in case this alternative doesn’t go well.

So guys, this is it, thank you for reading such a long text, and if you have any ideas/suggestions/questions about my treatment or how you would proceed, I’ll be glad to discuss them.

Thank you in advance for your help

Update 14/01/2024

Seems like I have two viruses reactivated. I got the flue at the end of last year and that explains why since then I haven't fully recovered. This might be one of the possilbe triggers of the neuropathy. Time will tell.

Epstein-Barr VCA IgG: 261 UI/ml (Reference Value: 2 UI/ml) - Positive
Varicella Zoster IgG: 1.402 mIU/ml (Reference Value: 110 mIU/ml) - Positive
HSV1, HSV2 and CMV test negative.

Post Edited (GeraltofRivia) : 1/14/2024 1:44:19 AM (GMT-8)

I have one of those at home, though I've never thought about using it for nueropathy. For something small, like a foot, is fine, but for the whole leg, seems more complicated. Still, I'll give it a go. Thanks!

GeraltofRivia said...
I have one of those at home, though I've never thought about using it for nueropathy. For something small, like a foot, is fine, but for the whole leg, seems more complicated. Still, I'll give it a go. Thanks!

You’re not thinking of a TENS machine are you? Easy mixup and very different. Why a practitioner is recommended. People listed on there have done like 3-4 seminars so they will know 1-5 things to throw at it.

Likely some nerve for your tissue selection. 20/30 hz on the issue selection should ease discomfort. But the real issue could be a toxin in the nerve, scarring, inflammation, virus etc.. and usually a practitioner will have 3-4 machines to run several pairings at once.

Best of luck.

Hi GeraltofRivia,

Sounds like things went wrong during/after the Minocycline and Fluconazole. A combo I'm currently on myself.

I'm sorry to hear that. I thought you might be interested in these links:

Vasculitic neuropathy following exposure to minocycline
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc4645168/

Peripheral Vasculitic Neuropathy Associated With Minocycline Use
https://journals.lww.com/jcnmd/abstract/2018/03000/peripheral_vasculitic_neuropathy_associated_with.7.aspx

Paradoxical effect of minocycline on established neuropathic pain in rat
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5427462/

Do you mind me asking what you meant by rib-cage expanding due to fluconazole? I think I have something similar at the moment.

Take care.

loski01 said...
You’re not thinking of a TENS machine are you? Easy mixup and very different. Why a practitioner is recommended. People listed on there have done like 3-4 seminars so they will know 1-5 things to throw at it.

Likely some nerve for your tissue selection. 20/30 hz on the issue selection should ease discomfort. But the real issue could be a toxin in the nerve, scarring, inflammation, virus etc.. and usually a practitioner will have 3-4 machines to run several pairings at once.

Best of luck.

I will look into it. I'm in Spain, so will have to check if this way of treatment is available here. They key is, as you say, find the root cause of the problem to attack it while doing remedies at the same time.

Thanks for the suggestions

Hi Rainycoud,

RainyCloud said...
Hi GeraltofRivia,

Sounds like things went wrong during/after the Minocycline and Fluconazole. A combo I'm currently on myself.

Yes, problems arose with that combo. Still, I don't think they are responsible for it. Fluconazole is very good against bartonella and minocycline helps, too, so I hope it helps you with the treatment.

RainyCloud said...
I'm sorry to hear that. I thought you might be interested in these links:

Vasculitic neuropathy following exposure to minocycline
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc4645168/

Peripheral Vasculitic Neuropathy Associated With Minocycline Use
https://journals.lww.com/jcnmd/abstract/2018/03000/peripheral_vasculitic_neuropathy_associated_with.7.aspx

Paradoxical effect of minocycline on established neuropathic pain in rat
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5427462/

I've read the three studies, and it's difficult to conclude that minocycline is causing the issue. Anyways, I'll take it into account and try to change it for something different to see if things improve.

RainyCloud said...
Do you mind me asking what you meant by rib-cage expanding due to fluconazole? I think I have something similar at the moment.

I don't mind. I have my pec muscles, traps and lats extremely tight, specially in my left side. Because of that, if I try to breath, I feel my right side ribs expanding naturally, without any restriction, but it doesn't happen in the left side. The left side is tight, so I have to breath expanding the lower ribs on that side, causing some postural problems. I guess it's some sort of air hunger. Usually babesia causes it, but I've read that sometimes bart can, too.

Garzie - have we seen a positive EBV PCR here? I can’t recall.. virus might not be in the blood no?

Garzie said...


Hi Loski
we have seen people with odd v high titres of EBV serology that were negative when tested via PCR
i don't recall seeing anyone here who reported being positive for EBV via serology and then also positive via PCR

on the question of whether it would be detected in a blood test - EBV mainly infects the B-Cells which circulate around the body in the blood and so i would be surprised if it were present and replicating in quantity sufficient to make someone ill with systemic symptoms - and not be in the sample. but anything is possible.

anyway - the main point i was making is that in the context of someone with suspected or confirmed Lyme disease - EBV diagnosis based on positive EBV serology is not a reliable diagnosis.

as a result i think patients should be at least aware of the known cross reactivity issue when making decisions around treatment, cost and risks - as we see a lot of people who assume positive serology = infection

I understand the logic here. Wanted to offer a contrasting opinion in regards to PCR not exactly being a "reliable" means of diagnosis either.

Like for babesia they infect red blood cells. But often aren't in high enough concentrations chronically to be found in a PCR or commercial blood analysis. I've seen data suggesting the main action is in held up in the spleen - equal to the robbers hiding in the police station. I believe in the 70's they autopsied a lifelong farmer in NW US and bound B. Duncani in his spleen - showing a case of an immunocompetent chronic infection.

Anyways, perhaps a similar phenomenon here..

Thank you Garzie and loski01 for your comments.

Considering what Garzie has said about cross reactivity between EBV and other infections, another way to see if the infection is active or not is to try some retrovirals, to see what happens, which is what I've done. Both times I've tried Famvir, after 3 or 4 hours fatigue went away. That period of peace lasted for around 3 hours and then fatigue was coming back slowly, together with a considerable headache at bedtime. This leads me to the conclusion that some virus is/are active. If the lab test results that I've got are reliable (who knows), those are EBV and VZV. No matter its name, they'll have to be treated.

I've read that some supplements, such as lysine, olive leaf extract and reshi mushrooms extract have antiviral properties, so I've bought them and started taking them. I've seen that other people have had success with these, so let's hope they work.