MichaelTampa

Before treatment with GcMAF my level was 1.40. I understand as a before-treatment number that result, though "too high", is not as elevated as many others. After injections totaling 1.45 ml solution (providing 580 ng GcMAF) over a period of 6-7 weeks, the test result was 1.00. Since that result, I had injections totaling 2.65 ml solution (providing 1060 ng GcMAF) over another 6-7 week period, and then a 5-6 week wait without GcMAF treatment before drawing blood for the next test (results haven't arrived yet).

As Family said, a misdiagnosis is possible. Another possibility to be aware of, for those who might be sure lyme is involved, is that mold is holding you back from getting better or completely well. I don't think there would necessarily be any additional symptoms, or at least any you could distinguish between lyme versus mold.

I am currently not on either the real stuff or the homeopathic. For me, the homeopathic was not of any help until I used lots of the real stuff. I am currently awaiting nagalase testing results to hopefully confirm it is down to normal levels. I did have an interim report showing it had declined but was still elevated at that time.

Gosh, tough question. I have read on other message boards people really having to make a clean break from everything they had, so if you're absolutely as bad off as them, perhaps this is the time to make the clean break and leave behind the couch. Hard to know what is really needed, though, seems like so many unknowns in the world of lyme and mold. The question of how much stuff to get rid of is something you're a little ahead of the game on compared to where I am at the moment.

On the yeast side of things, there are so many things out there, I was on extremely high dose nystatin and regular dose fluconazole ("diflucan") for long periods of time and they were helpful. The fluconazole can be hard on the liver is what they all say. On the non-prescription side of things, what helped me the most was CandiBactin BR from Metagenics (some acupuncturists carry this but also available from iherb.com) and very strict limitation/avoidance of grains (due to the carbs). Thinking of you!

So sorry to hear, what a terrible situation. Perhaps some drugs can help, I dunno, for me the prozac was a nightmare but my situation was different, just thinking those psychiatric drugs can be hit or miss, but you gotta do what you gotta do. I don't know that I have a lot of advice here, but a couple of suggestions on the "natural" route, you might consider SAMe for mood (Jarrow is a good brand), or Xymogen "Nrf2 Activator", which is excellent for inflamation. I don't know how it compares to the ibuprofen, or if ibuprofen has immune-lowering qualities that could be hurting (I think some of those OTC anti-inflamatories do, not sure), just tossing out an idea to try. By the way, we are getting close to a full moon here (Friday), where parasite troubles can be at their worst. Have you treated for parasites, or considered it? Don't know if any of these suggestions are worthy, just trying to help, hope you can get through it.

I'll send you a PM.

Stress can cause inflamation. So can chronic infection and biofilm can contribute to this. Inflamation causes problems in the cardiovascular system and body responds by making cholesterol to patch things up and keep the body working. Statins remove this natural healing cholesterol. Artifically lowering cholesterol with drugs like statins generally a bad idea.

As they said, no regular hospital is going to be of any help for your situation. If you're near the Tampa area, you might PM me, I could send some suggestions your way. If you tell me what docs you've already researched won't handle kids, that'll help, as that is something I don't know, then I won't waste any time describing those docs to you.

Interesting idea. I'm curious how you heard of this, and if you have any experience with it (such as, if you've used it or know someone who has)?

We have mold in our air conditioning unit, likely it will be replaced and that closet it is in cleaned up before the new one put in. But, what to do about the ducts which have had air passing through them that likely has some mold and dust on it? Is there some particular way we should ask someone to clean them?

It's a good question, perhaps sometimes they have specific treatments for specific viruses. In general, though, my experience is the treatment for viruses has not been specific to the viruses, so the testing on specific ones doesn't seem all that useful. Chronic lyme means you have viruses and they need to be addressed, but focusing on which one, not sure why to bother.

Yes, that's where it's from, it wasn't any difficulty for me at all.

Best wishes with it! I took the GcMAF from the site you listed for a couple/few months, off and on based on energy testing. It was awesome for me. My nagalase level was elevated but not super way elevated. About a month later I energy tested to take the HomeoK MAF and HomeoK BAB (for babesia). For those with seriously high levels of nagalase, the GcMAF may be needed to get started. The Homeopathic might tell your body to work hard trying to make macrophages, while the nagalase is saying the opposite, but the GcMAF is actually the macrophages, the real thing. I wonder if you'll be starting ds on the level the gcmaf website recommends (0.25ml once per week). I started slow at 0.15ml per week and worked up over time, until the last time I took it after a few weeks off I took like 1.10ml in a 3-day span. For the first several weeks, I was ready for a nap 30 minutes after the injection (didn't happen due to work and whatnot), but the fatigue was that significant, that I can only imagine what it would have been at full dose in the beginning.

The test results and symptomology are a bit suspicious for lyme, particularly if he is without exacerbations caused by exposure to bacteria such as strep (you didn't say but it read a little bit like that).

I have used them and found them okay, but not great compared to other detox approaches I have used. I do still use them occasionally. I don't remember the brand name, but I do remember I bought them from renewalenterprises.com.

It can be tricky to sort out. I once thought I had PANDAS and am now sure I have lyme and not PANDAS. One can have them both. The number of people with both makes me wonder if lyme causes PANDAS (as it is known to cause autoimmunity in general), or if PANDAS coupled with exposure to infections makes the immune system weak and unable to fight lyme off when exposed and so increases chances of getting lyme. To me, the biggest differentiator is that with PANDAS there are a lot of symptoms, such as OCD and including rages for people with that symptom, that come on quickly as a result of exposure to some infection (such as strep). And then as the exposure goes away, symptoms significantly reduce. When at my worst, I had symptoms that came and go, including rages, but the extreme high points of symptomsy were triggered by exposure to fluorescent lights and/or wireless signals, and they never came close to going away. Some symptoms are simply more lyme and having nothing to do with PANDAS, and chronic fatigue and joint pain come to mind here although there are no doubt others I am not remembering right now. When joint pain comes and goes or moves from one location in the body to another, and the person has a general symptomology in the PANDAS/lyme nature, then lyme is then always involved regardless of whether PANDAS might also be involved. I am sure some disagree here, and will point to rheumatoid arthritis being involved with strep autoimmunity, and there is history and documentation of this, but the docs who treat arthritis who also treat lyme see this symptom always go away with lyme treatment, and so I conclude all those cases were undiagnosed lyme (doesn't surprise me as we do see overlap with PANDAS and lyme). Well, that's my opinion anyhow.

poking of eyes - never had or heard of that one, although have had intermittent sharp pain that moved between foot and leg eye twitching - had that one myself, yes chronic itching - oh yes, had that and have heard others having that

Maybe he has a success rate like that for cases he treats, but there is a screening process where some percentage are not given the treatment (based on his thinking that those would not be helped).

It's not a digestive enzyme, and I've not heard of it having use as antiinflamatory, it's for biofilm. I haven't used it for a while, nor have I used the cistus tea in a while. I recently started moving/treating heavy metals again, and am using the detoxamin again, which by the way is now illegal to produce (no fair selling things if the big pharmaceutical companies aren't getting a take), with some number left to be sold and that will be it. I am now taking Rechts Regulat, which is fermented a vegeatable/nuts product that tastes kind of like vinegar, very acidic. This may be acting on the biofilm as well. Perhaps the remaining biofilm is a little different and the Regulat works on it while the cistus tea and serrapeptase do not. I am started exercising at about the same time, and my pulse is going down, so again, a combination of things seems to be working. Anyway, not on the serrapeptase in quite a while, I don't think any of these biofilm things are going to be useful as permanent things, but only while treating. I can't see why it would be too early to treat biofilm. Biofilm is a place all the bugs hide, so the sooner you get at that, the more effective everything else would be. Sounds strange, I don't understand how digestive enzyme would cause herxing, unless maybe it is working on biofilm? What enzyme did you give, what did the book suggest it might do?

I had a phone consult with Dr.K. for PANDAS before I realized it was lyme, so I guess that's a yes for Dr.K.

What is this talk of absorption being a problem? My understanding is you're going to get it either from a supplement or from making it yourself (with sun exposure). Are you two referring to absorption from supplements, or are you suggesting people get it from food?

I do believe it helped a lot, and believe it was synergistic with the serrapeptase & detoxamin (helped a lot by its own, but combination was better than sum of its parts).

This is where I bought mine. I took it twice a day for a while, used it with serrapeptase and detoxamin suppositories. http://www.biopureus.com/store.html

I think it's useful, and some patients and docs do. Other patients and docs don't. It does not show the impact of coinfections, but supposedly is depressed "only" from borrelia infection. I feel changes in this number have tracked my experience fairly well. Note that some feel that for kids before puberty it is not a good test, because the number can be low just due to physical immaturity.