posted
I'm new to the message board but certainly not new to lyme (sick for over two years, diagnosed 10 mo. ago). I've exhausted all online sources for info. on Cholestyramine and lyme and thought I'd consult with some of my fellow sufferers. Has anyone had success using Cholestyramine to bind and flush toxins from your system? I have been on abx for 9 months and have reached a plateau in my progress. Have taken Omnicef,Zith and Plaquenil for 5 months, the past 4 months Omnicef and Ketek. I made a lot of progress with squashing panic attacks, dizziness and some brain fog. But I can't seem to clear out the headaches, tiredness, muscle twitches and fatigue. My LLMD put me on Cholestyramine which was originally developed for people with high cholesterol due to its ability to bind and flush. Apparently some lyme patients are unable to flush away the toxins that have built up and thus remain ill. I've been taking four packets a day for a month, and have noticed only slight improvements in the headaches. I am hopeful that maybe my spirochetes are dead and I just need to flush out their remains and this is going to be my big break through. Am I kidding myself? Would love to hear from some one who has had success with this stuff and how long does it take??? LC
Posts: 116 | From Pennsylvania | Registered: Mar 2005
| IP: Logged |
I had success with CSM in the past. It actually was perscribed to be when I had my gall bladder removed. It did keep lyme away for a while, before I knew i had it.
Anyways, what really helps give it a kick is adding Physillum hushk (sp?) and making a shake out of it. Chocolate milk usually the best tasting. It is a real gut cleaner. Let me know how it works out.
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I have been using it for the last 4 months with excellent results.
But the guys here say it doesn't work :-(
I think it is not going to work in every situation.
If you have toxin behind blood brain barrier cholestyramine is not going to help that much. I think that you still may have some bugs in your brain that Omnicef cannot kill. You may try other antibiotics that goes through the barrier: Rocephin i.v., minocycline, doxycycline (600 mg/day), tinidazol. Omnicef likely cannot do it (or perhaps your dose is too small)
[This message has been edited by Areneli (edited 22 March 2005).]
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
posted
Thanks Calilymer, i'll check out the psyllium I haven't heard of toxins in the blood brain barrier. I'll have to do some research on that one. But I have been even more tired and fatigued than ever since starting the cholest. Maybe that means it's working. Or perhaps it's the ketek, my arms are so achey and "tired" too. LC
Posts: 116 | From Pennsylvania | Registered: Mar 2005
| IP: Logged |
Welcome to LymeNet. It really is the best resource for Lyme Disease and co-infections on the 'Net.
I strongly suggest you work with your LLMD to develop a Bartonella protocol. Your symptoms of headache, twitchy muscles, and fatigue are indicators of bartonella henselae infection. The best antibiotics for bartonella, in my opinon, are Rifamipin combined with Azithromycin.
Good luck...and..
Keep on, keepin' on!
-Lyme Wolf
Posts: 63 | From Twin Cities, MN | Registered: Mar 2004
| IP: Logged |
Welcome to LymeNet. It really is the best resource for Lyme Disease and co-infections on the 'Net.
I strongly suggest you work with your LLMD to develop a Bartonella protocol. Your symptoms of headache, twitchy muscles, and fatigue are indicators of bartonella henselae infection. The best antibiotics for bartonella, in my opinon, are Rifampin combined with Azithromycin.
Good luck...and..
Keep on, keepin' on!
-Lyme Wolf
Posts: 63 | From Twin Cities, MN | Registered: Mar 2004
| IP: Logged |
Welcome to LymeNet. It really is the best resource for Lyme Disease and co-infections on the 'Net.
I strongly suggest you work with your LLMD to develop a Bartonella protocol. Your symptoms of headache, twitchy muscles, and fatigue are indicators of bartonella henselae infection. The best antibiotics for bartonella, in my opinon, are Rifampin combined with Azithromycin.
Good luck...and..
Keep on, keepin' on!
-Lyme Wolf
Posts: 63 | From Twin Cities, MN | Registered: Mar 2004
| IP: Logged |
Welcome to LymeNet. It really is the best resource for Lyme Disease and co-infections on the 'Net.
I strongly suggest you work with your LLMD to develop a Bartonella protocol. Your symptoms of headache, twitchy muscles, and fatigue are indicators of bartonella henselae infection. The best antibiotics for bartonella, in my opinon, are Rifampin combined with Azithromycin.
Good luck...and..
Keep on, keepin' on!
-Lyme Wolf
Posts: 63 | From Twin Cities, MN | Registered: Mar 2004
| IP: Logged |
posted
LC, I've beem on cholestyramine since beginning of Feb. and it has helped tremendously with the fatigue and pain.
The first week on I had one heck of a headache for several days....nothing would touch the pain. The relief started soon after they disappeared.
I too, had reached a plateau of sorts after being on lots of meds for lyme and babesia since March of 04......but my pain and fatigue had become much worse after going on Ketek in Nov.
I am back on Ketek for a few weeks now and on CSM. Are you also on Actos and the "no-amylose diet"??? It is doing wonders for me although I know I have a long way to go.........
Gail
Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
| IP: Logged |
posted
I read Dr. Shoemaker's book "Desperation Medicine". In his book he said you can have an "intensification reaction" that can be much worse than a herx.
My kids have taken WelChol at times.
This is from Dr. B's guidelines:
Two prescription medications that can bind these toxins include cholestyramine resin (Questran), and Welchol pills. These medications may bind not only toxins but also many drugs and vitamin supplements. Therefore no other oral medications or supplements should be taken from one hour before, to three hours after a dose of one of these fiber agents.
Cholestyramine must be taken four times daily, and Welchol is prescribed at three pills twice daily. While the latter is obviously much simpler to use, it is less effective than cholestyramine. The main side effects are bloating and constipation, best handled with increased fluid intake and gentle laxatives.
posted
Ive met someone on a forum who had total relief from interstitial cystitis (but not other lyme sx) using CSM. I know a couple others who got little benefit.
(IC is a major major drag, I know cause I had chronic pelvic pain syndrome - email me if you have it and want links to a pathogenesis and treatment that seem to have worked 100% for many, possibly most people, and somehwat less so for some.)
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
For me an improvement after CSM means that the person has Bb in his body - clinical test for Lyme.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
posted
Thanks for welcoming me and all your replies. Gail- what is Actos and the "no-amylose" diet? How did it help you? I think I am headed for Mepron next if I haven't made some progress by my next appt. in mid-April. I also flush for about a week or so each month and my body temp. is usually pretty low, especially when I feel bad. Why do you think Ketek makes you have more pain and fatigue?LC.
Posts: 116 | From Pennsylvania | Registered: Mar 2005
| IP: Logged |
I've been taking CSM for about a month now. I've found great improvement from it. I was actually able to pull a 48 hour work stint last week and only slumped for a little bit for one (rainy, blah) day.
I started having an extremely difficult time taking abx. I've been in treatment for 3 years. Within 1 hour of taking either ketek or minocycline (the 2 abx I was supposed to be taking at the time) my heart would start skipping beats - sometimes multiple times. That caused dizziness and fatigue as well.
LLMD said it was due to toxins and also told me to get out of the room that I work in due to toxic mold problems.
I'm starting to get some Lyme sx back now. I saw one of my doctors on Monday and he rx'd low dose zithromax for it. I took it last night and thankfully haven't had the heart trouble.
I haven't herxed on CSM. I've had one episode where I had a splitting headache then lost partial vision in both eyes. That had happened to me once before about a month and a half after I was dx'd. Chalked it up to one of my many TBD's.
posted
Cholestyramine reduces obsorbtion of vitaminum D in Your body(thats how is written in drug encyklopedium) ,see Marshall Protocol www.marshallprotocol.com infos about vitminum D.
Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic