Discussion in 'Fibromyalgia Main Forum' started by romalaw, Mar 7, 2007.
Has anyone on this board tried Dr. Shoemaker's protocal with Questran?
I never heard of it. Is it some king of new treatment?
If you do a search you'll find my story about it.
In brief, I had high hopes. Soem actually get cured, though I think that's rather rare, as w/ any trreatment. It went really, really bad for me though, and corroded my gut BADLY. it took over half a year to heal the damage, get over a bunch of new food allergies and take a decent poop again. Be careful, it can be good, but it can go very bad too. I'd say go slow, take very good care of your gut, watch your diet, and don't assume that the die-off or possilbe side effects will just pass or lighten up. Mine did not.
i just got a package from hin to complete before and offcie visit and I was a little overwhelmed to say the least. I am very scared about laying out all of this money and really not knowing if I will be helped.
He also states that after you see him, if you need questions answered is, you will talk to his assistant and it was arounf $120.00 per 1/2 hour (something like that). I personally feel if I was to be treated I would want a dcotor to personally answer my questions and concerns. I don;t know... feeling a my hopes are a little crushed now. There is alot of out of pocket expenses, even though he takes my insurance and he wants me to read 3 of his books prior to even seeing him so I do not waste his time with not knowing the terminology he will be using.
I was also put off by the malpractice fee I needed to pay, among others.
Have you ever seen him before? Sorry, this is strictly my opinion and concerns, which was probably not what you were looking for. I was just wondering if you ever have seen him.
Sorry so long.
I have not ever seen him, I have read his book and had my doc prescribe Questran for me. I started off on a very low dose for about 3 weeks, I think it actually helped but I ran into problems with it because I'm on lanoxin for arrythmia and questran interfers with it, also reflux that is exascerbates by the medicine.
I'm fortunate to have a doc who listens to me and will let me try different treatments. I made an appt with one of the so called CFS experts and the intitial visit was so expensive that I couldn't afford to continue to see him. I have explored seeing many of the experts,including Shoemaker, and it is shocking how expensive they are, particularly in light of the fact, that they are just experimenting, no one has a cure. Sometimes, it seems to me that they are exploiting our desperation.
I just read your post about the big expense to get treated by Shoemaker himself. I wouildn't pay all that, it seems really unnecessary since I got the Questran rx from my own GP. I used the generic "cholestyramine" which isn't that expensive. Turns out I could have had my environmental doctor put me through the protocol anyways and she would have known what she was doing. My GP thought the treatment seemed harmless so he let me do it w/ no real supervision. My post above explains that it wasn't harmless at all and my env. doc said she goes much lighter on the trreatment than Shoemakeer because she knows how sensitive people like us are and how hard the treatment can be on the gut. Turns out my env. doc, who is from the States, actually learned the treatment from Dr. Shoemaker personally and said he is very nice and well meaning, but too gung ho and aggressive w/ the treatment.
In short, sounds like he is way overcharging for nothing. The drug itself is originally an old cholesterol lowering drug, has been around a long time and is cheap.
Hoping someone can help me. I convinced my doctor to do the Questran protocol due to the fact that the area I grew up in is now known as toxic if you grew up on well water. I did. Thus, the neurotoxin thing made alot of sense to me since nothing else has worked. Anyways, I only did 2 scoops daily and by day 3, was flattened with the worst "herx" in history of histories of trying
so many different treatments. In some ways, I was thinking this is a good sign since Questran
would not cause this in normal people nor is it listed as a side effect. Well, I am really concerned that I may have crashed my system so hard that I may not recover. My questions are: Why would this create such a herx if it weren't doing something? Does this confirm toxicity? Any advice or comments appreciated.
I am curious about what a malpractice fee is. I have never heard of such a thing. How much is such a fee?
Did the Cholestyramine several years ago. I too, had horrible herxing. According to Schoemakers website, only people with Lyme should react so severly. For those people, they pre-treat with Actos. I have never been diagnosed with Lyme but certainly have a lot of markers for it.
Hoping for more replies...thanks
I am probably more of a biotoxin patient than a CFS one. I am a patient of Shoemaker's and have taken high amounts of CSM (4X a day) for many months. It provided no apparent benefit for me. It seems to me that it if CSM is going to work it's going to work right away. I am not familiar with many people who had to take it for a long time before seeing a benefit.
I've heard several doctors who treat these conditions say that a herx reaction from starting cholestyramine can often indicate increased cytokine production, including MMP-9. For example see slide 36 or 48 from Dr. Eric Gordon here -
You can get MMP-9 tested at Quest (test 41865) to see if it's elevated.
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