posted
I do have a CDC+ Western Blot and positive antibody test from Igenex. However Lyme treatment seems nearly impossible for me. I have come to realize that I can't tolerate many foods, medications, supplements, etc. This really inhibits my ability to get well.
I've been reading a bit about correcting methylation and read this simplified protocol:
This problem seems to make sense since I take things to boost my glutathione. Whey and NAC work really well and I can't skip a day. It doesn't make me well, but it keeps me sane (at least most of the time). I have had less luck with glutathione infusions, and prefer supplementation.
Do CFIDS doctors generally know about testing for and correcting methylation cycles? I saw a list of CFIDS docs in Texas, but wouldn't know who to choose.
I just think my case may be Lyme and CFIDS. My symptoms were sudden and flu-like when they started a year and a half ago.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My symptoms started the same way as yours..... 4 years ago. Suddenly, flu like and then progressing from there.
I started Lyme treatment 2 years ago.
You said....."It doesn't make me well, but it keeps me sane".
Sorry, but I don't see the reasoning in just keeping sane and not killing the bacteria. You have to kill the bugs!!!
I have done the low and slow method of treating and although it has been tough, I am gradually seeing improvement. It is extremely slow; but I am slightly better than I was 2 years ago.
My opinion is that you have to kill the spirochetes one way or another. Treatment is not easy by any means, but if you find the right LLMD you can gradually recover.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Read about allergy immun. I just started and as I am very sensitive I only have to rub it in my skin for the beginning.
Posts: 1834 | From US | Registered: Oct 2008
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Oh gosh, kday. My husband and I were diagnosed as Fibromyalgia/CFIDS patients and we did EVERYTHING for it. If there is a protocol, we have tried it (including correcting methylation blocks). And we stayed with many of these protocols for years. All of this effort kept us functioning, but nothing got us well.
It is only when we began serious Lyme treatment that we began to get well. If you choose to go the CFIDS path, you will be working on your health for the rest of your life, and likely losing ground year by year. You have positive Lyme tests; go for the glory. Treat your Lyme.
I know the treatment is daunting, and hard on your body. You will figure out what you can tolerate, I promise. Others have done it. You can, too.
Find a really good Lyme doc. Ask for suggestions on this forum. You can recover your health!
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
If you can't tolerate treatment, it is a very good idea to explore some of the issues that might help you tolerate treatment.
I never thought I could tolerate treatment because for many years I was unable to handle many medications but especially antibiotics.
My LLMD started me out on cholestyramine and actos to help with the biotoxins. Some of us can't effectively remove the toxins that are created with the die off of borrelia (the pathogen that causes lyme). Search here at lymenet for biotoxin info and check out
After a year or more on treatment my LLMD thought some of the methylation issues applied to me so I got yasko testing and started that protocol as well, all while being treated for lyme, babesia and bartonella.
I also needed drainage remedies to help clear my cells of toxins. Search lymenet for Pekana for info about that.
You may need to look into the KPU protocol as well. Dr. K thinks that 80% of lyme patients have that genetic issue which can also impede our ability to handle treatment.
I was diagnosed with CFIDS and Fibromyalgia too. I've needed specific detox treatments in order to handle treatment.
FIR sauna may help you detox better too.
Sorry I can't go into a lot of detail about each of these things as I'm overwhelmed with things on the homefront right now but I've written here many times about most of them so you can find info by doing a search in the archives. Use the search link right under the "post a poll" button.
It helps to have a doctor who knows something about these issues but if you don't, take one thing at a time and investigate to see if you think it might apply to you.
Edited to add: Another thing that can help with the ability to tolerate foods, meds etc. is working on healing the gut. Many of us end up with leaky gut which may cause lots of allergies and food intolerance symptoms. The other benefit to that is that 80% of your immune system is in the gut so your immune system will improve as well.
Working with a Naturopathic Doctor on the gut and detox issues who is lyme literate and can work with an LLMD can be very helpful.
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