Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hello fellow Lyme sufferers,
I have been seeing an LLND (authorized to prescribe abx here in Oregon) since January. I was on Augmentin and Doxy, but was feeling really depressed and toxic so went off about 2 weeks ago (I have ceftin, Doxy and Rifampin sitting in my cupboard untouched).
I started Cholestryramine last Tuesday, but just 1/2 teaspoon at first. Yesterday I took 3/4 of a scoop in the am and the pm (1 scoop is 4 grams of drug). My brain fog feels worse. Had an awful headache and fatigue yesterday. I fell asleep in the afternoon after forcing myself to go for a walk since it was nice out.
I slept 8.5 hours last night and this morning my eyes hurt badly (deep, back of eye pain). I did wake at 6 am for a bit with anxiety, but was able to stay in bed and fall back to sleep. My head still hurts and feels really foggy.
Reminds me of bart, but I have never tested pos for bart. Is it just release of toxins? I am not taking actos with it. I am stooling OK..twice per day as I know you have to keep the bowels moving.
Does taking additional binders help (charcoal/clay, etc)? My doc prescribed it just twice per day about I saw Dr. S recommends 4 times per day.
posted
If you are too toxic have a think about a coffee enema, sauna, lemon water.
Liver detox...ammonia could be backing up and crossing blood brain barrier and making brain fog. (milk thistle, coffee enema for example)
Dark lettuce, a sprig of parsley and some chlorophyll in a couple cups of water put through a blender can help detox ammonia as can L-Ornithine.
I like the homeopathic Bryonia 30c for pain headache and pain behind the eyes. If that doesn't work I like homeopathic Cimicifuga for pain behind the eyes with depression.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's good that your found a LL ND to work with you. If something is not working for you, be sure they know as there are many other choices besides just about anything in the rotation.
Especially since you live in Oregon, you are most likely aware that there is not one LLMD because of the way the medical establishment views "Lymies" - without dignity and out in space, in a little bubble of their own creation.
Oregon is an especially medically hostile place for those dealing with lyme.
You may not be aware of how the nickname permeates beyond individual posts here but it does, as some of the articles written by doctors who view "Lymies" as not worth dignity or treatment at all.
While avoiding the term may not bring any MD in Oregon to be "allowed" to treat lyme or even be able to whisper it in the halls of a medical building, how we address others who deal with lyme is just one place we can build dignity.
- and how use of the term can hurt the way all are viewed who are trying to regain their health - and dignity. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Cholestyramine can be especially rough for some people. I could not tolerate it AT all.
There are many other threads with more detail of some who were in the same boat. And many with other suggestions of what helped them work with it.
Dr. S is not lyme literate (to the degree that those chronic treating lyme are). His use of this is entirely for different purposes. Your LL ND will know far more about the specifics in your case.
One reason your LL ND may not be using it more times per day is that it can pull all the good things out of your body, too,
and leave you very deficient in key nutrients (such as magnesium & good oils that are vital to the brain)
as well as diminish the therapeutic dose of Rx, whether allopathic or herbal. And it can cause blocked bowels.
The increase in dose from starting just on Tues. to Sat. for the increase is rather fast. You might back way down again to the original dose and stay there for several weeks. When increasing do so only very tiny bits at a time.
This stuff can really knock you over if too much, too soon.
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Thanks Lookup and Keebler! I will try the chloraphyll, as I have powder wheatgrass, alfalfa and barley grass to take. My LLND prescribed coffee enemas but I have not tried yet...I am a wimp because too much coffee orally makes my heart go nuts (I also have SVT from Lyme so any heart stuff makes me nervous). They say it doesn't get absorbed but have read of a couple people that said coffee enema did affect their hearts.
Yes I have seen that there are not any LLMD's here in Oregon. Although I feel Oregonians are much more acceptable to lyme disease than Ohioans. I have seen a billboard taking about Lyme disease and heard Lyme disease cautioned on the local radio stations. I could hardly believe they actually talk about lyme disease here! Quite amazing compared to where I come from.
I did not know the word lymie was offensive..I guess because my friends with Lyme disease use that term freely. I'm sorry if I offended you.
My kids' new medical doctor is lyme literate. She is not their Lyme doc but was talking up bartonella and Igenex with me (stating, make sure the lyme doc sends their lab tests there) and how homeopathy can help. Originally from the East coast and now in Oregon. My new FNP for primary case is lyme literate to a degree as well and is willing to write labs my LLND wants so my insurance will cover it. Oregon likely isn't like CT or MA, but it is FAR FAR better than Ohio is terms of lyme literacy and not scoffing at those of us with the disease in comparison to Ohio.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- you mention "anxiety" from cholestyramine increased dose - is mostly likely due to the fact it can diminish both important fats and also magnesium -- and maybe other key nutrients.
You might ask your LL ND about Gotu Kola, together with Stinging Nettle LEAF & CAROB ROOT POWDER as an alternative method. That's what helped me. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
The herb, STINGING NETTLE may serve to compensate for the reaction by calming the the cytokine storm that is often part of a herx reaction.
CAROB ROOT POWDER can also help "capture" some endotoxins in the gut. It also requires a good amount of liquid so the bowels don't get too sluggish. The difference is that it's nutritive in nature and will not deplete the body (unlike cholestyramine which is not at all nutritive and does strip the body of nutrients).
GUGGUL might also be a consideration, as a resin, is similar in nature to cholestyramine but not as harsh for some more sensitive people. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Glad to hear that you've found a few MDs who are starting to open their eyes even if not actually treating it.
Most who do that seem to be coming from other places who have seen it before yet they still have to keep rather low key about it as the official stance the supervisors at the Oregon Medical Board takes is still very much against the realities of lyme treatment protocols.
I'm so glad to hear that there is some movement for the better not just with lyme but bartonella, too, and Igenex. That is very heartening. You likely know of this group which is working very hard to bring about change where possible, yet, if not yet or need more detail:
posted
Cholestyramine can increase Lyme symptoms. I never could take it. It always made me feel worse. There are other things you can do instead. I used oregano oil and different binders than cholesytramine for my mold toxicity. The binders that worked for me are bentonite clay and takesumi.
PS I've always found the term "Lymie" to be endearing. Not for use in professional writing, but in slang, I've never had a problem with it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- previous post: "Lymies are nice people!! [Big Grin]"
Whether someone dealing with lyme is nice or not is not the issue here. But, it would seem that all are not nice to keep inflicting pain - bullying, really, on someone who says it hurts.
Not everyone wants to be treated with such a nickname. And, for those who do, it seems unfair to make others carry the burden.
The insistence of others to call everyone with lyme a "Lymie" even after it's been explained how much that hurts is just salt in the wound.
It is not nice to continue calling someone - or an entire group of patients by a name some within the group find offensive, insulting & demeaning from their experiences,
especially after explaining how it can - and HAS - been used to fuel bias against them (and the entire group of those with lyme) as such term does not just stay on a post here - it goes to the "outside" world and is repeated.
It poses a danger to those with lyme when the term becomes common usage. And, posts here are not just in someone's living room.
Like the "N-word" . . . some may not find it offensive or hurtful - or dangerous - but many do - with good reason.
There are examples of how this has hurt patients here, as doctors writing about those with lyme demean them and say they've even taken to enjoying a club house sort of appeal with such a nickname.
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