Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 Hello everyone, Here I am again asking for help. Gena still need a doctor in MD who is willing to test and treat her sister and go to court. Also, I can't find the information on Cholestyramine, Gena just called and asked me about it. I cannot find one article. Remember reading it, can't find where I put it. Honestly this brain of my,I don't even think science would want it except for a big laugh, I am sure it is full of lyme holes. You guys are great. I am trying to keep up with the mail. I know I only post when I need help and I am sorry for that. Right now i am making 100 copies of Dr. B's guidelines. We have a copier here at home, the MLDA's and it is a bigger job than I thought. love and thanks to anyone and all who answer. and to those who give so much time and information to this list. You are all lifesavers. Connie, MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2000 Report Share Posted May 22, 2000 Chronic Lyme disease: Symptoms, vision and new approach to treatment based on a theory Of neurotoxin-mediated Illness Ritchie C Shoemaker & Hudnell Chronic Lyme Illness Center, Pocomoke City, land, USA; US Environmental Protection Agency, National Health and Environmental Effects Research Laboratory, Triangle Park, North Carolina, USA Chronic neurotoxic symptoms refractory to antibiotics in 51 patients following a tick bite were treated with cholestyramine (CSM) according to a protocol previously used successfully in patients with Estuary Associated Syndrome. Prior to treatment, the chronic Lyme disease patients, 27 with and 24 without a positive Lyme diagnostic test, had a statistically significant deficit in visual contrast sensitivity (VCS), greatest at 6 cycles per degree of Equal arc, relative to 23 control patients. The Lyme positive-test patients averaged 7.9 symptoms and the Lyme negative-test patients averaged 5.9 symptoms before treatment. Following CSM treatment, all patients had abatement of their clinical syndrome; VCS scores and the number of symptoms equaled control values. A symptom intensification reaction, similar to but more intense than the Herxheimer reactions experienced previously during antibiotic treatment, occurred early in CSM therapy, especially in patients ill longer then three years. The intensification reaction was reduced with pioglitazone therapy or prevented by pretreatment with pioglitazone, a known peroxisome proliforator- activated receptor (PPAR) agonist. No relapse of symptoms was observed in patients followed for as long as 11 months These results suggest that VCS measurement is a useful tool for assisting is the diagnosis of chronic Lyme Disease, and that CSM treatment restores VCS and provides symptomatic relief in chronic Lyme patients, presumably by greatly enhancing the elimination rate of endotoxintn(s) released by Borrelia spirochete lysis before and/or during antibiotic treatment. The intensification reaction my result from differential gene activation by mobilized toxin(s) which induces release of cytokines, including tumor necrosis factor alpha, but can be countered or blocked by the PPAR gamma agonist activity of pioglitazone. This is an abstract of a proposed presentation and does not necessary reflect EPA policy. WHAT TO EXPECT FROM CHOLESTYRAMINE Cholestyramine (CSM) is an FDA approved medication used to lower elevated levels of cholesterol. It has been used safely for over twenty years in millions of patients who have taken the mediation for extended amounts of time You have been given a prescription for CSM to be used for only a short period of time to treat your chronic, neurotoxin-mediated illness. The FDA (6/28199) ruled that there was no reason to expect an increased risk to health from CSM in a group of patients who have illnesses such as pfiesteria, ciguatera, and blue green algae syndromes compared to those who don’t. Your prescription is given to you under this FDA exemption. Cholestyramine is not absorbed. Provided it is not taken with food, it binds cholesterol, bile salts and biological toxins in the small intestine. Because it binds toxins tightly, the toxins will not be reabsorbed; the CSM-toxin complex is excreted harmlessly in the stool provided there is no exposure to toxin or reacquisition of toxin. The CSM treatment will remove all the toxin over time, curing your chronic, toxin-mediated illness. Most patients are cured in two weeks, but depending on the amount of toxin in your body, the time to cure may be longer. Used at the FDA approved dose of 9grams of Questran (we use the brand name because of its greater effectiveness), or 4 Grams of Questran Light, taken four times a day, there are side effects that are potentially annoying but are not dangerous and should never prevent you from finishing your treatment program. Our trial treatment protocol attempts to anticipate the possible troublesome side checks; you will be given two additional prescriptions to keep on hand "just in case." Reflux of stomach acid, also called heartburn or indigestion, is common. It is experienced early on in treatment. The symptom abates spontaneously in most patients within a few days. A medication to stop over production of stomach acid, taken before beginning the CSM doses, can prevent heartburn. Mixing the CSM in apple juice, cranberry juice or dissolving CSM, first in hot water and then adding ice, helps reduce heartburn. Bloating and belching can also be caused initially by CSM. Fortunately, those side effects are rarely a major problem. Constipation is commonly seen. Many patients simply increase their consumption of fruit or fiber products. such as psyullim (Metamucil) to avoid this problem. A non-absorbable sweet tasting liquid sorbitol in a 70% solution, taken one tablespoon four times a day with food, will hold water in the stool, making bowel movements soft and preventing constipation. Even though sorbitol tastes sweet it will not worsen your diabetes or make you gain weight. Because many patients with chronic neurotoxin-mediated illnesses have diarrhea or more frequent, softer stools, this side effect of CSM can become a welcome, early benefit. CSM has been extensively tested in multiple clinical trials involving patients with chronic, neurotoxin-mediated diseases. The benefit has been substantiated by a double-blind placebo crossover study. The study was terminated prematurely due to ethical considerations: withholding treatment could not be justified, give the clearly demonstrated prompt clinical benefit. Your physician will be following your treatment carefully. If you have questions regarding any phase of your treatment, please notify your doctor promptly, there is no detail too small to ignore in cases like yours. You will be given special tests of visual contrast sensitivity on a regular basis. Your treatment will continue until your symptoms have resolved and your visual contrast is normal. Your physician will review your case in detail as your treatment progresses. DOCTORS, CONTACT MITCH HOGGARD, CHICO, FOR INFO (888-324-6240) Re: [Lyme-aid] HELP,MDMD,Cholestyramine Hello everyone, Here I am again asking for help. Gena still need a doctor in MD who is willing to test and treat her sister and go to court. Also, I can't find the information on Cholestyramine, Gena just called and asked me about it. I cannot find one article. Remember reading it, can't find where I put it. Honestly this brain of my,I don't even think science would want it except for a big laugh, I am sure it is full of lyme holes. You guys are great. I am trying to keep up with the mail. I know I only post when I need help and I am sorry for that. Right now i am making 100 copies of Dr. B's guidelines. We have a copier here at home, the MLDA's and it is a bigger job than I thought. love and thanks to anyone and all who answer. and to those who give so much time and information to this list. You are all lifesavers. Connie, MI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2000 Report Share Posted May 23, 2000 HI Connie, i am not sure if i understand what you are looking for re:cholestyramine. but i think the is something on the www.lymediseaseaudio.com website. a study using cholesterol lowering medication that is happening in land. i hope this helps. roe --- Cslyme@... wrote: > Hello everyone, > Here I am again asking for help. Gena still need a doctor in MD > who is > willing to test and treat her sister and go to court. > Also, I can't find the information on Cholestyramine, Gena just > called > and asked me about it. I cannot find one article. Remember reading > it, can't > find where I put it. > Honestly this brain of my,I don't even think science would want > it except > for a big laugh, I am sure it is full of lyme holes. > You guys are great. I am trying to keep up with the mail. I > know I only > post when I need help and I am sorry for that. > Right now i am making 100 copies of Dr. B's guidelines. We have > a copier > here at home, the MLDA's and it is a bigger job than I thought. > love and thanks to anyone and all who answer. and to those who > give so > much time and information to this list. You are all lifesavers. > Connie, MI > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2000 Report Share Posted May 25, 2000 i would like to know if the Cholestyramine, treatment for lyme kills/aborts the spirochete? and does it work for Babesia and/or Erhicliosis? thank you, cherlyme Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2000 Report Share Posted May 26, 2000 Pepi-- The protocol that I followed was 4 grams of cholestyramine added to about 5-6 ounces of orange juice (use a wire wisk to smooth out lumps--the orange juice makes it easier to tolerate the taste). This was taken 4 times a day, 1/2 hour before food or medication or 2 hours after. This could cause constipation, so sorbitol was used when necessary. I was on this for about 5 months. I herxed SEVERELY after about one week. It took about two months or longer to start to see any relief from the symptoms. You also need to understand that this was done in conjunction with a visual acuity test. If a person did not test positive with the vision test, the treatment does not work. Dr. Schoemaker sent me the test and I tested myself on a daily basis and as my vision cleared so did the test. The test kit is expensive ($400). I sent it back once I was finished (to the DR.). I stopped because the " testing time " was over and it was felt that I would not need it any longer also my llmd did not believe that it worked at all and would not prescribe it for me. It sure was nice not to have symptoms for a while. Rhonna Pepi wrote: > Rhonna, i have a friend that is fixin to try this treatment, but she is in > such trust with her Dr she has no idea what is being done. Can you mail me > the protocol for it? I sure would like to read it and then explain it to > her better. Thanks a bunch! Pepi > > > The Cholestyramine treatment does not kill the spirochete. What it does > is remove the > > toxins from your body that result from the spirochetes being killed off. > I was one of > > the chronic lyme patients used in the original study by Dr. Schoemaker. I > was on the > > mixture for 5 months. During that time many of the symptoms diminished or > totally went > > away (disorientation, nausea, blurred vision). However, when I stopped > they all > > returned. > > Rhonna > > ------------------------------------------------------------------------ > Old school buds here: > 1/4057/8/_/484634/_/959299482/ > ------------------------------------------------------------------------ > > is dedicated to Marta McCoy, the foundation behind what is today. > > Easy Reference: > Send a blank email message to: > > -Subscribeegroups - Subscribe to the list through email > -Unsubscribeegroups - Unsubscribe from the list > -Digestegroups - Switch your subscription to a digest format > -Normalegroups - Switch your subscription to normal > > Please send messages not related to Lyme disease to -Offtopicegroups > > Archives can be accessed at lyme-aid > > Please visit the chat room at chat/lyme-aid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2000 Report Share Posted May 26, 2000 Annie-- My llmd felt that it was taking too much fat out of my system. I felt that I could stand to loose some of the " fat of the land " . Another drawback was that it really was hard to take it 4 times a day with the time restrictions. Not to mention it was like very thick and lumpy orange juice and sometimes it would make me vomit. But I did get results. Rhonna InformationJunki@... wrote: > Dear Rhonna: > > If it helped with most of the symptoms, then why did you stop? Do you intend > to go back on? Did you hear of any drawbacks, minor or major? > > Annie from Los Angeles > > ------------------------------------------------------------------------ > Best friends, most artistic, class clown Find 'em here: > 1/4054/8/_/484634/_/959299869/ > ------------------------------------------------------------------------ > > is dedicated to Marta McCoy, the foundation behind what is today. > > Easy Reference: > Send a blank email message to: > > -Subscribeegroups - Subscribe to the list through email > -Unsubscribeegroups - Unsubscribe from the list > -Digestegroups - Switch your subscription to a digest format > -Normalegroups - Switch your subscription to normal > > Please send messages not related to Lyme disease to -Offtopicegroups > > Archives can be accessed at lyme-aid > > Please visit the chat room at chat/lyme-aid Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2000 Report Share Posted May 26, 2000 cherlyme-- I have thought about going back on the treatment if I could find a doctor to prescribe it for me... Like anything else, you have to find someone local who believes in the treatment to actually go out on a limb and prescribe it. Rhonna InfoNymfo@... wrote: > 1.i also wondered if one would continue this trtmt for symptom relief? > 2.did you want to go back on this treatment for relief of symptoms after you > had stopped? > thank you > cherlyme > > In a message dated 5/25/00 5:05:39 PM, rod@... writes: > > <<The Cholestyramine treatment does not kill the spirochete. What it does > is remove the > > toxins from your body that result from the spirochetes being killed off. > I was one of > > the chronic lyme patients used in the original study by Dr. Schoemaker. I > was on the > > mixture for 5 months. During that time many of the symptoms diminished or > totally went > > away (disorientation, nausea, blurred vision). However, when I stopped > they all > > returned. > > Rhonna > > >> > > ------------------------------------------------------------------------ > Missing old school friends? Find them here: > 1/4055/8/_/484634/_/959300527/ > ------------------------------------------------------------------------ > > is dedicated to Marta McCoy, the foundation behind what is today. > > Easy Reference: > Send a blank email message to: > > -Subscribeegroups - Subscribe to the list through email > -Unsubscribeegroups - Unsubscribe from the list > -Digestegroups - Switch your subscription to a digest format > -Normalegroups - Switch your subscription to normal > > Please send messages not related to Lyme disease to -Offtopicegroups > > Archives can be accessed at lyme-aid > > Please visit the chat room at chat/lyme-aid Quote Link to comment Share on other sites More sharing options...
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