Alternatives to IVIG

Hi everyone,

This post is a continuation of the two below, but in case you don't want to read them, I'll summarise everything in a second. Might be useful for those with autoimmune conditions who are trying to treat the infections.

https://www.healingwell.com/community/default.aspx?f=30&m=4335526
https://www.healingwell.com/community/default.aspx?f=30&m=4338769

I developped neuropathy while treating borrelia and coinfections, this neuropathy hugely increased with antibiotics and antimicrobials up to a point where I had to stop treating. I tried IVIG for 6 months but didn't work at all, so I've had to look for alternatives.

In these cases, one has to understand what is working wrong in your immune system to try to find a solution in that direction. The first line therapy for autoimmune conditions while treating lyme and coinfections are IVIG, steroids and plasmapheresis. In case these don't work, one has to look for something more specific.

I tried IVIG, 2gr/kg/month for 6 months, and it didn't work. Later on, I tried corticosteroids, 60mg of prednisone in one morning, and then tried to add abx, but still had huge neuropathy so it didn't work either (corticosteroids work very quickly, it's a matter of hours).

My case is pretty specific, as my neuropathy only triggers when I take antimicrobials. If I don't take them, it's barely noticeable. After studying some immunology and consulting with chatgpt, we both arrived at the conclusion that the autoimmune neuropathy was probably triggered by an innappropriate T cell response. For dealing with that condition there are some general alternatives, such as azathioprine, mycophenolate or methrotrexate that I didn't want to use, because it takes several weeks/months for them to get to work 100%. I wanted something immediate, as I didn't want to be taking immune suppresors without abx at the same time. Considering this additional requirement, the other alternatives I had available were cyclosporin and tacrolimus, which are specific to T cell responses, and some biologics, though the last ones take a few weeks to get to their full potential.

So I tried cyclosporin, and I can gladly say that it is working. So far I've been taking 5mg/kg/day, which is a standard dose for reumathoid arthritis, and I can take abx and antiparasitics without feeling the excrutiating pain in my nerves that I felt months before. I've been treating for one week and neuropathy is bearable, which is good news. I don't know if this is going to last, but still I have an alternative, which is going for biologics.

I'm sharing this story in case someone finds himself in the same position, as this is a very specific case. If you don't notice that your T cells are the ones that are not working properly and you don't use the appropriate medication to control their response, it will be impossible for you to treat the infections. In other cases it may be an improper B cell response, or the complement system, or a mix of two or even three of them. You just have to find which one is the cause and then, by trial and error, see what medication works. Another very important point: always take several abx if you are going to take immune suppresors, otherwise the infections will advance and you'll get worse.

I leave you below a playlist with eight very useful videos from Ninja Nerd on Youtube, where he explains the immune system at a medical doctor level but understandable to anyone. It has been the base for learning about the immune system and for helping me find the solutions to my problem.

https://www.youtube.com/watch?v=larxuakfsfs&list=pltf9h-t1tcjj4aopcxgxouth0ivmah7_8&index=1

In case you have any question or if there is something you want to know, I'll be happy to help.

Hi Geralto,

again my understanding is limited, but still in my view neuropathy is a symptom or an effect of active infections of lyme or bart. I think that by targeting the root, eg, reducing infection related mainly with nerve system, which I guess is cause of neuropathy, is going more to the point or heart of the matter.

Dr MR suggests dapsone protocol as an alternative to IV abx, on his treatlyme.net

In my case, what is seems to help is combo of abx that treat neurolyme and bart more concretely, eg. minocycline (excellent penetration to brain, CNS) combined with macrolides (claritro, azitro) with rifampicin (especially against bartonella but also lyme), possibly combined with cefuroxime. This at least gave me some herx and seems to work somehow. Also pulsing it and combing with extended herbal buhner protocol.

I have tried so many various medications and approaches and I adopted those that seem to work. This is my small piece of experience, but again it is so very invidiual. At one point I have to say I have given up on interpreting symptoms, unless it becomes extreme, including small burning, tingling, jerking, electric hits, stiffness of neck, various small symptoms that most the time go or at least change. Best wishes and good luck B

i think Geralt is saying he/she couldn't tolerate antimicrobial treatment at all - due to flaring neuropathy

and IVIG didn't work - hence looking for alternatives

its interesting as many people have written accounts here in the past and currently that pain flares when they treat with antimicrobials - so whatever mechanism is at work - may be more widespread than currently thought

Dear Geralto and Garzie,
thanks for your clarifications. Best wishes, B

I don't know if small fiber neuropathy is antibody mediated or not, the only thing I know is that until today there is no proof of specific autoantibodies causing SFN. Some people talk about TS-HDS and FGFR3 but it hasn't been confirmed yet. That's why I wouldn't discard the other ways of autoimmunity.

I can confirm for sure that cyclosporine is what is helping me. With IVIG I've tried Privigen and Flebogamma and felt no difference changing them. Prednisone did barely nothing and is immune suppresive. The effect of cyclosporine is immediate, same as with steroids. There is also tacrolimus, though there is a big problem with interactions, so it's better using cyclosporine. Cyclosporine takes only a few hours to work, it's easy to see if it works or not.