You are articulating, perfectly, exactly the same thought process that I've spent months going through (including wondering whether boosting my immune system would actually be harmful if I'm having autoimmune-type symptoms).
I have doctors arguing both sides to me, and it makes it very hard to know what the right decision is. Rheumatologists uniformly do not believe that continued Lyme treatment will be helpful. The LLMD obviously disagrees. My former primary care doctor (an excellent doctor who, unfortunately, no longer takes insurance) believed that I should continue to try to treat the Lyme aggressively, and not to go on an aggressive rheumotologic medication unless X-rays or other imaging showed the beginnings of some joint erosion. And so on. I spend a lot of time reading medical studies and abstracts, and it's definitely true that the rheumatologists' view is the more widely accepted.
There is so much variability in what causes different illnesses in different people, and so it makes sense that some treatments would be miraculous for some people but completely useless in others. I'm thinking, for example, of the subset of autoimmune patients (people with rheumatoid arthritis, scleroderma, psoriatic arthritis, etc.) who see miraculous results on a long-term antibiotic protocol (AP). For people whose autoimmune symptoms are the result of some bacterial infection, such as mycoplasma, it makes sense that antibiotics would provide relief. But for people whose autoimmune illnesses have some other origin, the AP approach may be completely useless.
At this point, though, I really am hoping to hear if anyone else has dealt with the puffy-finger issue and if Lyme treatment helped. I seem to recall some discussion of this way back, here or on another Lyme forum. It would be helpful just to hear people's experiences, whether or not the Lyme treatment was successful.
Sorry, I made my last reply without seeing this one from you.
Someone said on another thread the other day that they are considering looking into treatment for autoimmunity and it got me thinking even then. Now you have come up with this tread and the opinion of your rheumatologist also.
Perhaps fittingly, I was watching TV earlier and they happened to mention allergies. The doctor on TV said that we develop allergies when our immune system makes a mistake the first time we are exposed to something and then that mistake is constantly repeated. That makes sense to me and also fits with what it seems we are both thinking about
what these Lyme bacteria do to the immune system.
I've always found it strange that so many people have been treating this with everything under the sun for years with little or no improvement. Given that antibiotics used long term can damage the immune system it would kind of explain why all these antibiotic cocktails aren't getting so many people very far.
On the face of it, I have all the symptoms of a longstanding, chronic and very severe bacterial infection that has gotten into every single part of my body. In my case, the CNS is the worst affected. Yet my Armin Lab tests say I have only a weak positive and my NHS Lyme test says I have a weak positive that looks like a very recent infection! Two tests done very close together with different results.
I was originally bitten many, many years ago by something unknown and have a very old tick scar on my leg also. I have received no treatment for it at all. Yet one of my tests says I have a recent infection? It doesn't make any sense. Not only that, but none of my symptoms are anything like what I experienced during the original infection. It's all CNS, pain in muscles, joints, horrible head pressure and pain, eye problems, dizziness, vertigo etc etc. No fever, chills or anything you would expect from an infection. I also have arthritis. Detoxing does nothing to relieve any of it and neither do medications or herbs. Even taking into account biofilms, why does absolutely nothing seem to have any effect on my symptoms? Surely these things are hitting some of the bacteria?
My CD57 is low at 63, but not as low as some here and my white blood cell counts seem to go up and down all over the place. Anything I do to help out my ailing body and boost my immune system makes me feel worse. It's really beginning to look to me like my immune system is the problem here.
I've also been looking at fasting a lot lately. Knowing how autophagy works and how fasting starts killing off damaged cells (including immune cells), I can understand why some people with "Lyme" end up fully recovered after an extended water fast. I also watched a video the other day from a guy who spoke about
dietary changes completely curing him of an autoimmune disorder. His was almost like a fasting diet, but literally just involved mimicking the behaviour
of apes. Eat fruit, veg and beans ONLY when you are hungry. Forget set meal times and just eat when you feel the need to. It all makes perfect sense to me.
Lyme just doesn't add up. It really doesn't. Maybe for some of us, it has nothing to do with a long term bacterial infection and everything to do with a short term bacterial infection destroying our immune system in the long term. It could literally be that our immune system is so compromised that it overreacts to absolutely any infection we get.