posted
Hi all. Help needed. This is the second time I am trying Questran as a potential symptom reducer. I tried it in May and found the symptoms to be so greatly exaggerated that after about a week, I stopped.
I feel like I am back on the Questran as a last resort. I have aggressively treated neuro lyme under the advisement of Dr. J in PA for nearly 2 years.
In April I opted to stop all Abx and look into the alternate treatment approach through a more holistic physician who said Questran would bind to the toxins left by the Lyme and bring symptom relief.
I stayed off Abx even after stopping the Questran and found that May and June brought with them horrendous arthritis and pain. And though it resolved after those two months... July brought cardiac troubles. (racing, pounding, skipping- all documented.)
And just when I thought I was out of the woods... because the arthritis and cardiac issues subsided, August brought neurological symptoms putting me back to square one- where I was at the time of diagnosis in 2005.
I am not back on Doxy 400mg a day (since beginning of Sept.) and for the past 3 days Questran.
The Questran is KICKING MY BUTT. It seems to aggravate my symptoms. Increased twitching, more swallowing issues. PRESSURE in my neck and head. Headache, pounding, and dizziness! And difficulty concentrating.
Does anyone have experience with Questran? Do I stick it out hoping it is doing its job to sequester and usher out left over toxins? I am willing to take it until it helps me or puts me in the hospital...
It really seems like it could put me in the hospital. I've had lyme/abx induced meningitis twice before- and this resembles the early stages of that.
posted
Oops, sorry. I meant to type- I am NOW back on Doxy 400mg a day as well as Questran. Not sure how I wrote something different there.
Posts: 64 | From Pittsburgh | Registered: Sep 2005
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posted
Ya know, a lot of docs used to Rx Questran, and then they get bummed out when people have problems with it. But Questran's only half the protocol.
Dr. S, the guy who came up with the Questran idea, says that Questran can make you herx, and that he gives the insulin sensitizing drug 'Actos' to his patients for a few weeks before starting Questran.
Dr. S says the Actos reduces the herxing. I'm not sure, but I think many docs are afraid of Rx'ing Actos, because it is a drug that effects insulin.
Maybe you should talk to your doc about this part of the protocol, that it's supposed to be used with Actos. You can get more info on this from:
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
good point about the actos. I did both after seeing Dr. S a couple years ago.
And, Dr. S prescribed sorbitol to loosen stools. I used something else, but it's so important for tons of water, and multiple bowel movements daily.
First of all, Dr. S. does not use Questran as (at least then) it had aspartame (nutrasweet) in it. some say it has sugar, different versions, but check the label.
Please, now, check the ingredients. If it has aspartame, stop using it. aspartame is an excitotoxin. Any other additives can pose a problem, too.
Dr. S. had pts get a individually compounded formula from a pharmacy in Boston (in 2003). It was simply cholestryramine and stevia - and they could make it however much you wanted.
Carob powder will bind to endotoxins. I just remembered. I put it in for flavor, but it could be used alone, if you ask your doc and do a little research.
Oh, you are not allergic to shellfish, are you? If so, stop. cholstryramine is from shellfish. I assume your doctor would have asked that, tho.
good luck. I need to study the carob idea more. Hot carob soy latte, eh?
Posts: 48021 | From Tree House | Registered: Jul 2007
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WHAT IT DOES: Sarsaparilla root is sweet and bland in taste, and neutral in action. It removes toxins from the bowel, and reduces inflammation and dampness from the blood, liver, urinary system and skin.
. . .
Sarsaparilla root has been famous in the West since 1574, when a French physician described its use in treating syphilis.
Various Smilax species are used to treat infections and inflammation--especially those affecting the skin and intestines--in many countries . . . Because of the historical use for syphilis, many herbalists now use sarsaparilla root for Lyme disease, also caused by a spirochete organism.
Naturopaths believe that sarsaparilla root binds and remove endotoxin from the bowel, perhaps by stimulating liver clearance (Murray & Pizzorno, 1989).
Deng (1994) tells us that endotoxin--chemicals released into the host after breakdown of the cell walls of gram-negative organisms-- accords closely with the idea of "pathogenic toxins" in TCM. His studies have shown that the removal of endotoxin helps control many inflammatory and febrile diseases.
I have found sarsaparilla root to be very useful in treating various skin diseases, especially psoriasis. Interestingly, psoriasis has been linked with higher circulating levels of endotoxin (Belew et al., 1982).
. . .
Research Highlights
* In 1942, the New England Journal of Medicine published a controlled study showing that an endotoxin-binding saponin extract of sarsaparilla was effective in reducing psoriasis symptoms (Thurman, 1942, reported in Murray & Pizzorno, 1989).
* Clinical tests in China demonstrated that the Chinese species called Tu fu ling rhizome (Smilax glabra) is effective for treating syphilis in about 90 percent of acute cases and 50 percent of chronic cases (Bensky & Gamble, 1986).
Since Lyme disease is also caused by spirochete organisms, it may prove beneficial in the treatment of this disease as well. TCM doctors use Tu fu ling rhizome to treat joint pain, turbid urine and jaundice caused by heat and dampness.
Posts: 48021 | From Tree House | Registered: Jul 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Locally that protocol doesn't seem to help people- a bunch of us tried it at once-
Doc Sh said it was because of our strain of babesiosis that made it NOT work locally so maybe you have Babs??
I don't know!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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