-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Tutu... Sorry to hear about that....
That was always my greatest fear: not to be able to eat anything.
It can't be the food, I mean, the culprit.
It can only be the gut, in my opinion.
the gut is so complex and hard to treat.
I would try the urine therapy, in your case. At least, in homeopathic dilutions (meaning, virtually no urine, but a drop is enough to prepare loads of medicine).
It takes 5 minutes to prepare your medicine, if you try the D3 (or 3X dilution).
All those antibodies are being leaked through the urine, so why not using them, as nosodes are made?
That is what I would certainly try, in your shoes.
I would be scared to death to be in your skin, as I already felt that it was coming to us, not long ago.
We're still fighting, trying, changing diets constantly. But I think I'll re-start the homeopathic nosode from urine this weekend.
I mean, I'm MUCH better now, I can even eat apples again (not all sorts, but before I could eat none).
My daughter is still struggling more than me, but she's also better (as we're eating kimchi at a daily base)!
Google how to make an homeopathic dilution, in case you decide. Very very easy. It always worked for us, in case of pollen allergy (we simply diluted pollen itself and sniffed, took the drops).
Posts: 6199 | From Brussels | Registered: Oct 2007
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If so, then this could also explain refractory B-12 deficiency issues since B-12 can't be absorbed whenever a special area in the upper small bowel is damaged by celiac.
I'll save my "good news" suggestion for a separate message, next after this so that it doesn't get lost inside this message.
Posts: 4563 | From TX | Registered: Sep 2002
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
LymeToo, this idea is special just for you.
Let me tell you about a local area friend's success story in healing from life-threatening inflammatory ulcerative colitis by following a liquid "elemental diet" for six months without ingesting any solid food at all during those six months.
She is well now, really well.
Here's a link to t product that she used, followed by a second link to their "sister website" which explains the rationale for this product.
This is their most popular flavor because it doesn't contain any fructose which many sensitive folks cannot tolerate. It is temporarily out-of-stock right now. I've tasted it, and it is quite acceptable in flavor, even without the extra sweetness that fructose would add to it. http://shoppe.listentoyourgut.com/absorb-plus-unsweetened-vanilla-1-kg-tub/
Here'a link to their sister website which explains the rationale behind this product. http://listentoyourgut.com/
Our daughter keeps this product on hand at all times in case of an accidental "gluten-ing" because it can be invaluable as an emergency food source until her gut heals after accidental ingestion of hidden gluten.
I'm confident that this product will help you, based on my friend's experience with it. Her husband is one of my husband's very closest colleagues, and we have been family friends for nearly 30 years. In other words, I know her extremely well, and I have followed her progress throughout her long ordeal
In fact, I was the one who suggested this product to her, and she now shares her leftover supplies with cancer patients who cannot eat or digest because they are undergoing chemotherapy.
My friend was able to continue working throughout her long recovery, and she was able to get off of the steroids which her doctor had prescribed for her to stop the pain and GI tract bleeding every time that she tried to eat any solid food.
I wish you could meet her in person. You would not believe how extremely ill she was until she started using this product. After a few months, she took my suggestion and started juicing fresh organic veggies to supplement her liquid elemental diet. They grew their own veggies in their backyard garden.
She is in her early 60s and the picture of health now, and she is able to eat whatever she wants now although she sticks to a strict Ayruvedic vegetarian diet as a matter of personal preference. She also succeeded in cutting her sugar cravings and no longer eats fruits or any other form of sugar.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
Thanks... I'll read the first link again. Very interesting.
As for the second, I'm sure I would be allergic to most everything in there. I might try the samples they mentioned, but I've not been able to take Vit C for about 20 yrs now. That's only ONE obstacle.
Then there's the tapioca, the vanilla, the soy, the dairy. Doesn't sound hopeful.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
If you try the samples, then try to wait until the unsweetened flavor is available because it does not contain fructose which sensitive folks try to avoid or limit very strictly.
Do your remember Artist Di who used to be an active member here at Lymenet. She had mast cell activation disorder and went to the famous doctor in NY who treated her. She maintains now on low dose steroids, I think, or at least that's what I recall from my last PM with her several years ago.
I would encourage you to contact Artist Di, if possible. Otherwise, I'll try to find the name of that famous doctor in NY who helped Artist Di so much. You have probably already run across her name in the literature and on her website because she is very well known for treating MCAD.
Posts: 4563 | From TX | Registered: Sep 2002
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posted
I'm on Facebook with her. I'll ask her a few questions. Thanks again for your care and concern.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Lymetoo, do you see a Mast Cell specialist?
If not, they might really help you. I see a Mast Cell specialist, he is much more knowledgable & helpful than a regular Allergist. People drive from other states & far away to see him!
If I may ask, what Mast Cell meds are you taking daily? I need Xyzal (antihistamine) 5mg twice daily, Pepcid (h2 blocker) 40mg twice daily, Gastrocrom 5ml (2 vials) before meals, and Ketotifen 3mg twice daily.
I still struggle with some Mast Cell symptoms, but they were much more severe before starting this combo, at that point they were life threatening.
Ketotifen has brought about the most dramatic improvements for me.
Before taking Ketotifen, I was basically only able to eat milk, saltine crackers, or Boost supplement shakes. Everything else caused serious reactions.
Now since we've gradually increased my Ketotifen dose, I can even eat many foods that are even considered higher histamine or histamine liberators (like tomatoes, pineapple, strawberries, oranges, yogurt, cheese, small amounts of bacon & ham)!
I do avoid very high histamine foods like canned/ pre-packaged sea food, fermented foodds/sauces, moldy/aged foods... I do still react negatively to these things.
Throughout the day, general health/ illness, stress, endurance/ fatigue, diet, allergen exposure, etc... all these things build up contributing to histamine load until they over flow causing our Mast Cell symptoms.
So there are some things that we can do to try to lower our overall histamine loads. But some things are beyond our control.
I try my best but I know that that is not good enough. So I am grateful for Ketotifen and my other Mast Cell meds.
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