posted
My daughter did it last February. She was not improving with abx, and when lab work came back showing no MSH and barely normal VEGF, and a positive VSC test, the doc pulled her off IV's and started this protocol. Her progress was remarkable. She became as close to normal as she has been since being diagnosed. However, she was still testing positive for lyme, so we knew she would have to go back after a period of time. Her followup VCS was negative and another one a month or two later was even better! I was very skeptical until I saw the results.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
I would like to learn more about this protocol. Do you have a link or site that I can read about it?
Dr. C suggested I ask to be switched to Actos as one of my meds for my diabetes, but didn't elaborate on why. He didn't say anything about Cholestyramine.
Foggy
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posted
I'be been on it for 2.5 months and nothing to report to date.
It did cork me up like a block of Swiss cheese. They should used the csm in construction it's so binding.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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SForsgren
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posted
See www.ChronicNeurotoxins.com. That is the Dr. that promotes this protocol. I started the Actos today and the CSM mid-week.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Foggy
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Scott/Shelly etc, my LLMD also wants me to add allergy shots with antigens of the molds I'm reacting to. Anyone try this?
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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SForsgren
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posted
I would consider it if mold were shown to be a significant problem for me. I use BioSET to deal with my allergies, but I have used EPD/LDA in the past and if this was advice from a reputable LLMD, I would personally consider it.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
one concern i have with cholesteramine is its effect on cholesterol levels. this drug lowers cholesterol.
a too-low cholesterol level correlates with stroke; certain cancer(s); and, perhaps; blue mood, slight to severe depression,and severe depression to the point of suicidal feeling tones/thoughts.
the last three items i'm taking from an unsure memory, and the drug book i have on hand doesn't even list it; of course, if there is any correlation between low cholesterol and blue- mood and/or suicidal depression, it would be dose dependent, and, i presume, dependent on one's medico-psychiatric history, or lack thereof.
in my own case, i'm concerned about stroke, and cancer.
based on prev. experience,if i were doing any of the imidazole abx(e.g. flagyl, tinidazole, etc), i'd be REAL concerned about them inducing depressive moods at some point during, and for week(s) after a course of any one of them.)
the l/n, threads medical archives of 1998-2002 addressed cholesteramine and actos, as have at least one lyme newsletter, featuring a summary of shoemaker's protocol, if not authored by shoemaker himself in the letter entitled,'Lyme Times.'
any input on this appreciated.
while i'm gonna look this up, there is nothing like testimony from one who took it consistently enough to have established an impression of its effects.
in the threads of the archives, one member swore by chitosan as having a similar, if not same effect as cholesteramine + actos. my 'take' on this members interpretative response, was that the chitosan probably bound to OspA, since one abstract having by steere,et.al. spoke of the use of chitin in connection with OspA. chitosan is an altered form of chitin.
On the other hand, when one is infected, OspA, at some temporal point is "downregulated," when in the host, presumably humans, and Osp C is upregulated in the host--supposedly. when in the tick, OspA binds the chitin in the tick, wherein, its a structural part of some anatomical part of the tick.
therefore, according to the member's response to chitosan, either he had OspA of Bb in his body,a contradiction to statements made by at least one lyme researcher, since OspA is supposed to have been downregulated(not expressed) after one is infected, and/or, it is both expressed in some strain(s) and not others; and/or, chitosan binds to other Osps(outer surface proteins = antigens), as well.
for the abstract on chitin, go to medical abstracts, and search, "chitin"; you should pull-up at least one abstract soley, or co-authored by steere. if it doesn't show, then search medling abstracts, and elsewhere for the connection between chitin and borrelia.
sorry for any confusion, as i'm trying to distill a bunch of complex topics into a short paragraph.
SForsgren
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posted
You don't take it as an ongoing therapy. So, I think the risks are worth the benefit from what I have read so far and if not well-tolerated, you can always stop.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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riversinger
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quote:Originally posted by Foggy: Scott/Shelly etc, my LLMD also wants me to add allergy shots with antigens of the molds I'm reacting to. Anyone try this?
Foggy, my doctor told me that my reactions to molds were severe enough it would be dangerous to try and desensitize. I know a woman who tried, anyway, and she says it was a very bad experience.
I think it depends on whether you have an allergic reaction (IgE) or a TOXIC reaction. My response to molds is NOT an allergic response.
Foggy
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I had an IgE reaction, hence the LLMDs idea of shots.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Starphoenix
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Just my personal experience: I was one of Dr. S's patients. He doubted I still have Lyme. (I do, and it's been confirmed by PCR.) I took CSM for about five months. It did nothing for me, nothing at all. I couldn't tolerate the Actos because of a liver effect. But that's just to reduce the Intensification Reaction anyway. It doesn't reduce any possible effectiveness of CSM if you don't take the Actos.
I was getting sicker, and I pushed for Lyme treatment. He dropped me like a hot potato.
I believe it does help some people. It just didn't help me.
And I think Dr. S has a piece of the puzzle, but not the whole puzzle, as he seems to think.
It's worth trying; I'll say that much.
Steph
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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WildCondor
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posted
Thw Quesrtran worked really well, but the Actos was another story. Actos dropped my blood sugar to 20 and made me pass out, very bad experience whiel herxing at the same time! I stopped it that day after only a handful of doses. Questran works well just make sure sure you take the 4 packets a day, and space it out from other meds (hard to do)works good for GI issues too.
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riversinger
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Foggy, if you are having IgE reactions, it might work for you. I would say, just go really slowly, so that you can back out if you have a bad reaction.
Starphoenix, I agree with you that Dr S needs to realize that Lyme can be chronically infective. I have stayed on abx treatment while doing the CSM, and it has been very helpful. I am just consulting with Dr. S, but I have another Dr. in charge of my treatment who feels strongly that we need to treat long term.
S's theories have evolved a lot. Not everybody takes Actos. There is more to do than take CSM. Still, it is only part of the picture. For me, his protocol has been a very helpful part. I just got confirmation that I have Bartonella, which came out of hiding while I was doing the second stage of S's treatment, going after the nasal Staph with Rifampin. Up until now, I have never tested positive for Bartonella, and my LLMD wouldn't treat.
I think if we can combine what our doctors know, we have a chance. None of them know everything.
SForsgren
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posted
I agree with using several docs and using your own knowledge to know where to go. I use 3-4 doctors and there is not one that knows all of this... Good approach.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
I took Questran for 2 months after 4 years on ABX. I can tell you for sure that many of my persistent symptoms were neurotoxins. I never thought that neurotoxins can mimic so well a lyme symptom. It was 2 packets a day cause of my weight 118 lbs
Posts: 983 | From The sky | Registered: Feb 2005
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I think it is unlikely that many long term Lyme patients have low cholesterol or that the Questran would actually cause their cholesterol to go low unless they took a high dose for a long period of time.
If they had severe G.I. problems it would be a possibility (malabsorption of fat). Early on when he had giardia and ascaris and trichostrongylus and lost 30 pounds in 6 months with chronic gastritis hubby's cholesterol fell to 140 and triglycerides were at 35. Hubby actually did IV fatty acids to try to raise cholesterol. Without cholesterol the body cannot make many of the necessary hormones.
I hadn't thought about this in relation to depression as the psych admits were about 3 months before the cholesterol bottomed out and then about 6 months later during severe herx reactions to Dr J herbal treatment in Kansas. It is possible that if someone was severely depressed a low cholesterol level could exacerbate this.
Now 4.5 years into illness hubby does IV phosphatidylcholine (when we can afford it) to lower cholesterol. It definitely lowered GGT (which can be an indicator of a fatty liver). Antibiotics plus the Lyme both stress the body and cause most lymies to have elevated cholesterol levels.
Riversinger and Scott,
I totally agree that no one doctor has all the pieces of the puzzle. The problem is finding doctors who will work together and not want to run the whole show. Unfortunately there seem to be some that will not listen to the patient or are not willing to consult with other doctors.
Lymeout,
You said your daughter's VCS test improved. That's awesome as hubby's seem to get worse every time we do one. My question is what about the MSH? Did that improve also? Also, I am pretty sure hubby had a VEGF test once, but I forget what that stands for and what the test indicates?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Bea, I don't know if her MSH changed. She had none before she started csm. Her VEGF was at the very bottom of normal before, and it has gone below normal. I haven't discussed the significance of this with the doc yet; but I think it means that her body is still incapable of expelling toxins on its own; but I am assuming that occasional csm treatment will continue to do it. She has put her on a bunch of German natural remedies that are supposed to help the kidneys, liver and spleen detox. lymeout
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
Bea, Thanks for input/experience with this. yes, the lowering of cholesterol by cholestyramine would be dose-and time-dependent.
Posts: 2708 | Registered: Feb 2005
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riversinger
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posted
VEGF is vascular endothilial growth factor. It is a hormone that causes capilary growth and is associated with sufficient blood flow and oxygen supply. When it is very low, it can be associated with shortness of breath and exercise intolerance.
Sudden drops in VEGF can indicate new neurotoxin exposure. It is one of the indicators Dr. S uses to see how someone is responding to therapy. In addition to the CSM, there are other possible therapies to raise chronically low VEGF, and he finds it important to do so.
As far as cholesterol going too low, I have been told to push good quality fats in my diet to replace the ones CSM is removing.I haven't had my numbers tested yet, so don't know if it can go TOO low, but I have been on a high fat diet for some time.
Bea, you are right. It is hard to find a doctor whose ego doesn't get in the way. I try to keep parts of my treatment seperate, but it can be tough. We just have to keep doing the best we can.
posted
I did CSM 1-2x a day for about 6 weeks, after a week at 4 doses a day (that's all I could tolerate at the time)and my VCS test improved significantly. My LLMD said I still had a ways to go and and have now been taking 3-4 doses a day for about a month. I don't use Actos, but do add 1/2 to 1 scoop of RenewLife Fibersmart to each dose and have had no problems with constipation.
Kathryn S.
Posts: 17 | From Minneapolis | Registered: Aug 2005
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Lymelighter
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Scott, are you doing the Dragon Rvr tincture? If so, how do you take it? Tea, drops w/H20, drops on body areas?
Posts: 1010 | From Mars | Registered: Feb 2004
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posted
Ive taken the Cholest.... but not the actos.
I could not tolerate it at all. I ntried it twice, twom weeks apart to make sure that this is what was causing me problems, and I know it was.
I am a long term Lyme sufferer, and I have low cholesterol. Why would someone think this combination unlikely ?
The neuropsyc symptoms were tremendous. And they came the same time frame after starting the drug and the same way, totally repeatable, when I tried taking it a scond time. This made the effects more tolerable the second time. I knew I wasnt going crazy and it would go away when I stopped the medicine. And it did.
I did research after this and found out that too low of cholesterol is linked to mood disorders, phsyc problems, etc...
So, if you have low cholesterol, proceed with caution. If you try it, make sure you have good support on hand in case you react badly. And scince you're forwarned its a posibility, it wont be that bad if it happens anyway.
I dont have such support but survived the weekend relatively unscathed, just a few totalled kitchen items, easily replaced, and some trust issues, not so easily repaired.
Posts: 222 | From Santa Cruz Mountains, CA USA | Registered: Nov 2004
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runner21
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Member # 1974
posted
hi, i have done the cholestyramine, but not with a whole lot of success. but it seems to help some. the things that seem to help me the most with toxin binding are modifilan at a high dose, sometimes charcoal, if tests as well as chitosan. charcoal wont bind to metals, but helps to bind to other toxins.
Posts: 1118 | From jacksonville,fl usa/santa rosa ca | Registered: Dec 2001
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