I am booked in to see Prof. de Meirleir in January

[abporter]

@maryb its a genetic test that shows susceptibility to certain things but for us its important as it relates to mold, lyme and other biotoxin illnesses and our response to antibiotics and abilities to detoxify neurotoxins. Look at survivingmold.com and the work of Ritchie Shoemaker for more info.

I just watched this Shoemaker video on treating Borrelia and detoxifying neurotoxins:
http://www.betterhealthguy.com/dr-ritchie-shoemaker-video-on-lyme
It seems to make sense to detoxify neurotoxins while doing antibiotics and thus perhaps reduce a herxheimer reaction.

However while researching, I saw this, which basically says all this is nonsense:
Excerpt:
"Until the existence of Lyme neurotoxins is proven (it shouldn’t be so hard to find them in a culture broth), we should not risk what remains of our health and spend time, effort and money on trying to “detox” them, because the “detoxifiers” and “toxin binders” such as Cholestyramine (Questran) have never proven their value in any randomized, double-blind, placebo-controlled, peer-reviewed, reproducible trial but they do have very serious potential side effects, including cancer. Those binders bind important nutrients as well, weakening the immune system. “Detoxing” (AKA the ethereal “body cleansing”) distracts from the real issue: How to kill the Lyme spirochetes more effectively and how to prevent an extreme immune response to the Bb bacteria/dieoff damaging our tissues."
http://owndoc.com/lyme/lyme-neurotoxin-detoxing-nonsense/

Since I'm about to start treatment for Gram Negative Bacteria, I'm wondering where people who have researched this stand and/or if anyone has had experience taking Cholestyramine and antibiotics for Borrelia or co-infections and their experience.

 

[maryb]

@abporter
very interesting link about neurotoxins.

 

[Jenny]

I just watched this Shoemaker video on treating Borrelia and detoxifying neurotoxins:
http://www.betterhealthguy.com/dr-ritchie-shoemaker-video-on-lyme
It seems to make sense to detoxify neurotoxins while doing antibiotics and thus perhaps reduce a herxheimer reaction.

However while researching, I saw this, which basically says all this is nonsense:
Excerpt:
"Until the existence of Lyme neurotoxins is proven (it shouldn’t be so hard to find them in a culture broth), we should not risk what remains of our health and spend time, effort and money on trying to “detox” them, because the “detoxifiers” and “toxin binders” such as Cholestyramine (Questran) have never proven their value in any randomized, double-blind, placebo-controlled, peer-reviewed, reproducible trial but they do have very serious potential side effects, including cancer. Those binders bind important nutrients as well, weakening the immune system. “Detoxing” (AKA the ethereal “body cleansing”) distracts from the real issue: How to kill the Lyme spirochetes more effectively and how to prevent an extreme immune response to the Bb bacteria/dieoff damaging our tissues."
http://owndoc.com/lyme/lyme-neurotoxin-detoxing-nonsense/

Since I'm about to start treatment for Gram Negative Bacteria, I'm wondering where people who have researched this stand and/or if anyone has had experience taking Cholestyramine and antibiotics for Borrelia or co-infections and their experience.

Hi ab - I've probably said this elsewhere, but I was on Questran and all kinds of abx for borrelia and other infections for several years, including IV ceftriaxone for 12 weeks. They had no effect at all, good or bad.

Good luck!

 

[maryb]

@Jenny
have you tried any of the herbal protocols?

 

[Jenny]

@Jenny
have you tried any of the herbal protocols?

Hi maryb - I tried resveratol (sp?) for a while - didn't do anything. Also samento for about 6 months - had to work up very slowly as hard to tolerate, but it didn't help.

At the moment I'm on Chinese herbs and having regular acupuncture. I'll post about my experience on this treatment in a few months.

(In my case, I don't have much faith in the borrelia etc diagnoses, I'm afraid.)

 

[maryb]

@Jenny
I tried Samento as well, it caused neuro effects quite quickly, I understand now that you have to go up at a drop a week. Also have to take Burbur with it as an anti-inflammatory, I have a protocol for Samento, Banderol, Burbur if you are interested. Hope you're having success with the Chinese herbs though.
If you are well enough can you say why you don't have much faith in the borrelia diagnoses? I've just recently been diagnosed and its turned me upside down really. But I have to say all my symptoms point to it, I also think mine has turned into neurolyme.

What I have read recently about Lyme is that if the a/biotics are used incorrectly the borrelia become resistant to them. Its a minefield...

 

[Jenny]

@Jenny

If you are well enough can you say why you don't have much faith in the borrelia diagnoses? I've just recently been diagnosed and its turned me upside down really. But I have to say all my symptoms point to it, I also think mine has turned into neurolyme.

What I have read recently about Lyme is that if the a/biotics are used incorrectly the borrelia become resistant to them. Its a minefield...

Hi maryb - I first looked into the Lyme etc issue about 8 years ago. I had numerous tests from various doctors - some were positive, some negative; some indicated borrelia, some other infections. One place I went to was the Breakspear and I felt in the end that the doctor I saw there just didn't know what he was talking about. He didn't know how to interpret the different test results and told me conflicting things from one visit to the other. They use different tests I had now (they seem to use some for a while then abandon them) but I've never seen any evidence for the validity of any tests they use.

I've been in touch with quite a few people who did abx treatments and have never heard of anyone with my cluster of symptoms who improved. Those who did improve tended to have had an obvious tick bite and severe acute pain and neuro symptoms. They seemed to have less exhaustion than people diagnosed with ME. I never had any evidence of a bite and my main symptoms right from the start were feeling like I had never-ending flu, and severe weakness. Like many, at my worst I have only been able to walk a few steps. Perhaps unusually, I've never had many cognitive difficulties.

 

[maryb]

@Jenny
Thanks for replying, sorry your experience with B/spear was so poor. I don't know whether the newer testing is better?
I've just had the epitope test on band 31kda which is supposed to have a 98% certainty.
My doc suggested this after some bands on my first tests were IND, band 58 was positive which they said is linked to Scottish ticks - I've been to many a dog show in Edinburgh at the agricultural ground there, and stayed with friends up there every year. Never remember specifically being bitten by a tick but was always getting bitten by something whilst out walking or riding over a number of years.

Yes your symptoms don't sound like mine but we have the same diagnosis via the NHS - morons.....

I have horrendous head pressure and very sore foot soles at present, absolute and utter fatigue - the slightest exertion and my body is drenched in sweat, also without exertion, sometimes every hour then a couple of times a day.....No pattern. Allergies and severe food/supplement intolerances, limited diet and so on.

Be interesting to hear about the Chinese herbals after your trial.

 

[Jenny]

@Jenny
Thanks for replying, sorry your experience with B/spear was so poor. I don't know whether the newer testing is better?
I've just had the epitope test on band 31kda which is supposed to have a 98% certainty.
My doc suggested this after some bands on my first tests were IND, band 58 was positive which they said is linked to Scottish ticks - I've been to many a dog show in Edinburgh at the agricultural ground there, and stayed with friends up there every year. Never remember specifically being bitten by a tick but was always getting bitten by something whilst out walking or riding over a number of years.

Yes your symptoms don't sound like mine but we have the same diagnosis via the NHS - morons.....

I have horrendous head pressure and very sore foot soles at present, absolute and utter fatigue - the slightest exertion and my body is drenched in sweat, also without exertion, sometimes every hour then a couple of times a day.....No pattern. Allergies and severe food/supplement intolerances, limited diet and so on.

Be interesting to hear about the Chinese herbals after your trial.

I've had the head pressure, but thankfully not very severe and not for some time. Also, like you, sore soles occasionally! I don't seem to have any allergies and apart from the samento never had any problems with tolerating any supplements or medications. I do get quite a lot of gastro symptoms which only improved since I found I was lactose intolerant and avoided normal milk. I still get some bloating and indigestion though especially when in a bad patch. After 30 years of experimenting with diet, apart from lactose I've never been able to identify any food that makes things worse.

 

[maryb]

@Jenny
Sore shins as well!! oh and I forgot the constant veritgo and dizziness
it certainly is a strange illness that has us chasing out tails. But one thing for sure is doing nothing is not an option.

 

[November Girl]

There is a blogger whose son has had success with long-term antibiotic treatment for lyme. She and her two sons all have CFS.
http://livewithcfs.blogspot.com/2014/06/quote-it-saturday-621.html

 

[naoise]

@snowathlete hi...I was reading in this thread that dr Meirleir put you on a rotation diet? I got the results of my food intolerance test back and am shocked I've pretty much no foods I strongly react to. I'm worried he'll have me eat dairy etc even though I react worse to them. Is that something he does?

 

[snowathlete]

@snowathlete hi...I was reading in this thread that dr Meirleir put you on a rotation diet? I got the results of my food intolerance test back and am shocked I've pretty much no foods I strongly react to. I'm worried he'll have me eat dairy etc even though I react worse to them. Is that something he does?

I think the report I had from the company suggested a rotation diet. But De Meirleir just wanted me to cut out wheat and dairy? I actually cut out all the stuff that caused me problems.

 

[naoise]

I think the report I had from the company suggested a rotation diet. But De Meirleir just wanted me to cut out wheat and dairy? I actually cut out all the stuff that caused me problems.

Ah ok thanks. Cause the report does have a suggested rotation diet but there stuff there that didn't come up as a problem in the test but when j eat it I have a reaction like certain veg, grains, dairy etc. Was wondering if Meirleir would put me on it anyway even if I have reactions.

 

[snowathlete]

my guess is that he would agree that it's worth avoiding foods that you know cause you problems even if not shown up on the test.

 

[naoise]

my guess is that he would agree that it's worth avoiding foods that you know cause you problems even if not shown up on the test.

Thanks - I am hoping that's the case! If he suggests I eat dairy, grains, tomatoes etc I may lose it ha!