posted
Hi all! I had a frustrating appt. with my "LLMD" (more about why that's in "" marks on the general board, if you care to read) this afternoon, and was hoping for some input.
I got my second round of IgeneX results back today (after he finally found them). My first results were as follows:
IgG Positive: bands 39, 41 and 66 all +. band 34 IND
IgM negative: band 18++, band 30+, bands 23-25, 39, 41, 89-93 IND.
Second results showed more Positives in the IgG, but IgM only two (39 and 41) IND bands, no + bands.
LLMD says this tells him I had lyme at one point but that my immune system is keeping it at bay, which is good.
He said the IgM being less positive now meant the supps are working, but my mother pointed out that between the tests I was not on any supps yet, just abx. Couldn't that be an indication the abx were helping? Doc said maybe.
He wants me to detox by taking an Rx called "Well Chol" (any experiences??) and keep taking the supplements (that he sells in house at $15 more each than you can buy them for online) he's recommended.
Does this seem like a reasonable approach? I've just read so many times that any indication of having it should be treated.
However, other events unfolded that made me question his legitimacy in the first place, so I don't know what to think.
And in the mean time, my symptoms expand and get worse I just finally thought I was getting somewhere with my health...
I'd appreciate any input.
Posts: 106 | From Michigan | Registered: Oct 2006
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Hi Kate,
I can't help with questions about abx and tests, etc., but I did see an earlier post that someone started (MariaA) a week or so ago, where she wrote about welchol, among other things that helped her to become well. She seemed to speak favorably about it. Hopefully, this is the link (below). If it is not, do a search on welchol or look for a thread called '6 months cured.' Maybe you could PM her for more information.
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
welchol and cholestyromine (CSM) are similar agents that are taken as binding agents. they bind with everything including the good stuff so it is difficult to find the times to take them. They will bind with and then help your body excrete toxins.
People here have had varying experiences with these agents. I, myself, didnt find them useful but they didnt hurt either. I have loads of CSM left over. I may try it again when I am trying to sop up toxins more aggressively.
My LLMD helped test about 1/2 of the patients doing the CSM protocol along with Dr. Shoemaker many years ago. Much has been learned since that time, but my doc hasnt kept up with the latest shoemaker stuff.
You may want to google shoemaker and nuerotoxins. He makes good points, but has recently created a rift between himself and the lyme community by saying that chronic lyme is not due to ongoing infection, but in fact due to nuerotoxic overload. He has turned his back on ILADS.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
up for people who've had site problems, and for more info about this welchol?
trails and claire, thanks for the info! I'll certainly be looking into this more.
After my brief foray in reading several old posts about welchol on this site, I'm not sure what to think. I read several bad things, but a couple maybe good things about it being paired with abx; however, my doc didn't pair it with abx.
So, to clarify my Q's:
Do my IgG positive and then MORE positive results mean I had lyme once and my immune system is doing okay by itself fighting it off, so I don't need abx?
Second, what experiences do people have with welchol?
Thanks!
Posts: 106 | From Michigan | Registered: Oct 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Not crazy,
here's an example of CDC consistent pos bands from my last Stony Brook western blot
CDC specific kDa Band Reactivity IgM 23 41 and other "CDC" non-specific bands (66)
IgG 23 30 41 58 93 and other "CDC" non-specific bands (25,31,34)
These are "CDC" specific bands for positive IgG and IgM positive western blot....but must be used in conjunction with a CLINICAL DIAGNOSES.
I suggest to you that your so called "LLMD" is a fake.... Further evidence of his selling you his overpriced naturopathic supplements is more evidence that this guy/girl is a fake....
I would suggest you take your test results to a different more reputtable REAL LLMD.
These tests are not FDA approved as definitive but to be used for research purposes only...
While they MAY keep the wolves off of the backs of legitimate doctors who treat with long term ABX.
A Clinical diagnosis is the only way a doctor can determine if you have this disease or not!
Your questionalble "LLMD" not recognizing these facts leads me to believe he/shi is a DUCK!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
WelChol gave me horrible muscle cramps and made my neuro pain much worse--something I didn't even think was possible. I couldn't take it for more than a few days.
Similar response to cholestyramine. I have almost a whole bottle of WelChol and a whole box of cholestyramine that I'll probably never use.
One good thing about WelChol is that it isn't loaded with sugar like the cholesyramine (unless you get a special formulation, which my doctor didn't prescribe).
In "Mold Warriors" Dr. Shoemaker says he uses Actos or Avandia to pre-treat Lyme patients because there's so much TNF-a inflammation involved. These two drugs help block TNF.
Why LLMDs don't do this, I don't know.
Posts: 353 | From Florida boonies | Registered: Nov 2005
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bettyg
Unregistered
posted
kate, please send me a pm w/your drs. name in it; i'll check the 2 lists i have to see IF this person is on good llmd lists!
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
As listed in the thread linked above, I had really good success that I attribute to welchol AS WELL as chlorella and bentonite and occasionally charcoal. I felt some clearing of 'brainfog' about 10 days to 2 weeks into taking doxycycline and welchol/bentonite/chlorella, and I kinda doubt it was just the antibiotics working that fast. I was taking a lot of neurotoxin binders (mostly the bentonite at first, and the welchol as directed) My LLMD says that some people respond to the welchol that quickly and the natural neurotoxin binders more slowly- that brainfog is partly caused by the toxic excretions of the spirochetes- and it seemed to have worked as advertised in my case.
I was finding it cheapest at costco pharmacy- you dont have to have a Costco card to shop at the pharmacy, by the way.
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I just finally thought I was getting somewhere with my health...
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