posted
Do any of you have experience using ambrotose or other glyconutrients ? I would appreciate your feedback.
They are supposed to raise NK cell counts , and I believe they do , because I am getting an extremely STRONG reaction from the doxycycline I have been on . I had to cut the doxy dose in half , and I am still having a powerful herx .
I have bolded the glyconutrients that Borrelia requires.
Glyconutrients are composed of 8 sugars: Glucose , fucose, galactose, mannose , xylose, N-acetylneuramic acid (sialic acid), N-acytlgalactosamine, and N-acytlglucosamine - which is contraindicated for patients with Lyme disease according to the ``Townsend Letter for Doctors'' on the biochemistry of Lyme disease below.
``Carbohydrates Consumed by Lyme Spirochete An effort to determine which carbohydrates Bb consumes revealed that the organism utilizes the monosaccharides glucose , mannose and N-acetylglucosamine , as well as the disaccharides maltose and chitobiose. A popular treatment for arthritis includes the administration of chondroitin sulfate and N-acetylglucosamine. If the arthritis is Lyme-induced, N-acetylglucosamine is contraindicated.22''
On a more personal note, I took glyconutrients for approximately 2 years when they were first considered cutting edge science back in 1998. I was also being treated for Lyme disease & Mycoplasma infections at the time. Looking back, I can't help but wonder if they played a part in the severity of my disease progression. I certainly never felt they helped me, not even at the time, but it now appears they might even have been harmful. Glucose is thought to be the primary fuel for Borrelia, but remember, N-acytlglucosamine (NAG) is a necessary component of the culture medium used to grow Borrelia because it gets incorporated into the spirochete's cell wall. Other research suggests that NAG may also be a source of fuel, as is mannose.
I would urge you to research Borrelia's metabolic functions much more carefully before beginning glyconutrients. It seems that glyconutrients may be contraindicated in Lyme disease. They may seem palliative, but they might also be counter-productive.
It is possible to increase NK cell count without increasing the NK cell function. Unless you are using a lab that measures both NK count and NK function, it's hard to know whether or not you are achieving anything. Way back when I was using glyconutrients, I did increase my NK cell count a little bit, but my NK function did not improve. The ID doctor I had at the time told me that increasing the number of NK cells that don't function the way that they are supposed to was kind of like increasing the number of drunken sailors on a sailing ship, because it wouldn't help me very much.
Wishing you and your doctor all the very best when it comes to deciding how to proceed.
Posts: 487 | From USA | Registered: Feb 2002
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I'm so glad you wrote about this. Someone gave me information, but I just didn't feel in my gut that it was the right path to take. I've often wondered if I made the right decision.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Lonestar You are soo kind to take the time to help by sharing this.
It is certainly confusing! Would this mean that aloe vera juice is also a poor choive with lyme disease ? I take it and it is helpful for gut issues , but I do not want to feed the bacteria.
Do you mind tellin g me what you HAVE found most helpful in your efforts to get well?
posted
They now claim it pushes the cysts open.
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I was always suspect of the aggressive marketing by the company that makes Ambrotose. I tried it & found it to be not helpful. I didn't know I had Lyme back then when I was trying the Ambrotose.
Thanks for the info Lonestar. I guess this is why they tell people with Lyme to avoid sugar. It's kind of hard for me to give it up since I've had to give up so many other things in my life due to Lyme.
There are a number of other supplements you can take that increase NK cell activity. I don't advocate any products on this site but it's a good place for some info -
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Very interesting, Lonestar. How does one check NK cell function vs NK cell count?
There was a couple here on the board who used to post - the husband had Lyme - and they attributed his success in getting well and going back to work to taking glyconutrients (Ambrotose) and a couple of other `alternative' things. Their username here was ``Virgil and Mary''. If you are seriously considering Ambrotose or some other glyco-product, it would be worth it to send them a PM. (You'll have to type their name into the Directory search.)
Also, the glyconutrient ``galactose'' has been posted about on this board quite a bit - mostly by Gigi, as I recall - and she seemed to think it was a pretty significant supplement. I think there were a couple of other people taking it here as well, but I haven't heard much about it for awhile. Note that galactose is NOT utilized by Bb.
I tried to do a search here at LymeNet but it just won't work today. Maybe somebody will have more luck.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
Tracy I used Ambrotose for 1 1/2 years. Recently I quit taking it but felt it helped me a lot in my recovery. I haven't felt as good lately and that is the only thing I haven't been taking recently.
Posts: 738 | From Colorado | Registered: Oct 2004
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
I took Ambrotose for some time around 1999-2001. Not consistantly, but sometimes for months at a time.
I was experiencing infrequent but severe out-of-balance feelings at the time. Ambrotose seemed to calm them down.
However, it certainly wasn't a long-term solution at all, and my functionality decreased over time.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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