posted
Hi, everyone. I'm not sure if I'm going to ask this question correctly, but want to give it a shot.
I started taking NAC, a glutathione precursor, eight weeks ago. The results have been incredible, although of course I get disappointed with anything that doesn't provide an immediate cure. I have been herxing a lot, and on days when I feel better, I push myself so hard that I relapse. Then I get annoyed at relapsing, without noticing I'm working two jobs and starting a Master's thesis, which would not have been possible two months ago. Even on days when I feel really bad, I can still force myself to get something done, and relapses, although more frequent, do not last as long as before.
But I also have become more aware of what effect all the other abx and herbs I take are having, and feel more and more convinced that while all of them hold the Lyme spirochete in check, none of them can go beyond a certain point. I don't think they are slowly picking off the spirochetes one by one. I think the keets have retreated to a spot abx can't reach, where they can reproduce indefinitely.
I have had the same experience with every other abx and herb. Each time I took a new one, my health has improved more, but none of them has stopped the endless relapses. Logic would seem to say that eventually, the relapses would get less frequent or milder. Mine have not changed at all, I just have better ways to minimize the symptoms.
Since I started to think this, I have been so depressed. Does anyone out there with more experience have insight into these two theories, "gradually picking them off" versus the "using abx to hold them at bay for life?" And if the second is true, what do we do next?
posted
You have discovered the ultimate question for Lyme patients. How do those little keets stay hidden from all the treatment modalities we throw at them. We can never seem to get them all. ABX certainly don't completely work for those of us who ended up with chronic Lyme. The borelia seem to change form, hide, then reseed the body when it is safe to come out again.
Some of us are exploring how other health issues lower our immune system and help the Bb to hold on in whatever form it moves to in order to survive. For example, it is believed that heavy metal toxicity will help prolong bacterial infection and candida, as well as lower our immune system.
It is believed that long term ABX, which all chronic Lyme patients need to survive, is actually a double-edged sword that creates other problems that many Lyme patients or their doctors don't deal with adequately.
ABX change the internal flora in our gut, which causes leaky gut syndrome and systemic candida. It also creates an environment that is friendly to parasites and worms, which in themselves help to create more candida.
It is a vicious circle, and one that needs to be addressed along with Lyme itself.
I'm not saying this is the only way, but until valid medical research catches up with the reality of Lyme disease, many of us have found these additional health issues key to dealing with Lyme, and post-Lyme health issues.
BTW, if I could wish for just one simple thing for chronic Lyme patients, it would be a reliable test for Lyme disease. A reliable test would open many, many diagnostic and treatment doors that are currently slammed in our face.
posted
Thanks, LJames. I've been reading with interest the conversation between you and others about candida, metals, etc. I'm going to try the heavy metals test, and will definitely check out the cleanses. I take nystatin--is that useful for controlling candida, or is there something more effective?
Actually, I've been thinking a lot about trying minocycline again, especially since TX Lyme Mom recently sang its praises and then disappeared from the site. I can't help wondering if mino worked so well, she's forgotten all about Lyme, a dream come true. If it's too strong to take for months on end, maybe a short pulse on a low dose, 1-3 days a week, might work. I just feel like I'm so close to being over this, it's easy to get impatient about finding the last key (or keys) to beating this.
posted
Liz28...nystatin works for some. Candida was too entrenched for it to work for me. Also, if I am remembering it correctly, nystatin works locally in the gut, but will not control candida if it has gone systemic.
Due to leaky gut syndrome and parasites, my candida seems to have gone system wide. Again, if my memory is correct, diflucan is needed for systemic yeast. Pardon me, but some of the time I mix the two up concerning their mechanism of action. Someone can correct me if I'm wrong.
It is good to remember that we are all different, and just because one of the prescribed drugs, or a self directed herbal protocol didn't work for me, doesn't mean it won't work for others.
Each of us is different. In my case, I know I have mercury issues, along with leaky gut, along with systemic candida and parasites, which means I'm probably worse than most. That is why I'm now working with a practitioner who has specialized in this area for almost 20 years. I realized I can't do it on my.
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