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Member Since 06 Mar 2012
Offline Last Active Nov 15 2012 01:23 PM

Posts I've Made

In Topic: Supplements

13 November 2012 - 03:59 PM

Wow..it sounds like you got a Dr. that will know what you're dealing with? I hope you get good answers.

Here in this part of the country we pharmacies called The Medicine Shoppe. They'll mix up meds. You could try using your search engine and type in compounding pharmacy and the name of your city and state. Hopefully something will pop up?

I was going to say internet and phone book for finding a compounding pharmacy. I think that's what I did here. Your pharmacist might know of one.

Thanks! I found one in town :)

In Topic: Supplements

12 November 2012 - 04:34 PM

Wow. Thank you for the Lyme disease education. That is going to be very difficult to go through Lyme and super sensitive celiac. Do you know about compounding pharmacies? They make up drugs for you and that way you can be sure what the fillers are. Plus, you can tell them about your super sensitivity so that they can be really careful about how they do it. I would think that it would really complicate things as to whether it is the Lyme flaring up or a reaction to some food. I hope that you have some good good support. That is terrible that a state could regulate against a scientifically based medical treatment.

No, I haven't heard of compounding pharmacies. But that does sound exactly like what I need, though. How would I find one?

And yes, I realize healing is going to be extremely rough. I met with my new Lyme doc today and she actually has Lyme disease AND Celiac disease herself, so I feel like I'm in good hands.

In Topic: Refractory?

11 November 2012 - 10:16 AM

The herbs seem like possible culprits in your case? I find it interesting that you are trying to boost your immune response, while they are trying to dull mine down. The stronger your immune system the harder it can react to any trace gluten.
I hate the idea of antibiotics too, but if you need them be sure to take probiotics at the same time. I was told by the Mayo Dr. that one with acidopholis is really important.

Exactly. It's like the treatment for one of my conditions contradicts the other. Oy.

So where do people who react to trace amounts of gluten get their probiotics? It seems like anything that is processed I can't handle, so I'm scared to trust any brands. For the last week or so I've just been drinking kombucha.

In Topic: Refractory?

11 November 2012 - 10:05 AM

I was very slow to heal and had a second scope 6 months after my Celiac DX. The Gi's opinion when seeing the state of my intestine was refractory sprue. A very scary thing to hear! The biopsy report tells the condition of the cells they find. If it's refractory sprue your lymphocites will be high. Mine were not. I ended up going to Mayo and they did more tests. A hydrogen breath test showed a high hydrogen reading and a high methane, which they said was unusual. They said it was a probable SIBO infection. I also tried a couple of anibiotics with no change in symptoms.
We sound similar because I was reacting to more and more things too. I was put on digestive enzymes so I could break down the foods I ate better. They also put me on a steroid that stays in the intestine and is usually used for Crohn's. ( Budenoside) to knock down inflamation.

In my case it seems like I still react to more and more foods. I don't tolerate spices at all..and have to limit herbs..so I wonder if those that you take for the Lyme are causing you trouble?

I just had another scope and a colonoscopy this past week. I had started seeing blood on some stool which was very alarming. I had increased nausea and burning in my stomach too. The scopes showed I had quite a few small ulcers in my stomach..gastritis, and early signs of diverticulosis, and hemerhoids in the colon which bled when touched.

I have to send pics and the reports to Mayo to see what the next step will be.

In the mean time I did a lot of reading about GMO foods recently when there was a labeling proposition on the ballot in California. I'm really thinking it's worth taking a look at. I was using beet sugar and ate things with corn syrup. I've just cut out anything that could have GMOs. They suggest that the genetic changes in these foods don't break down and *could* cause the bacteria in our guts to take on an the ability to produce BT toxin. I haven't been tested for that, but I think I should bring it up with the GI?

If you aren't taking a digestive enzyme, I think you might benefit from it? Maybe you could try adding a few things, like organic bananas? I hate the added expense, but I'm trying organic veggies for a while to see if I notice improvement. My diet is quite limited too, so I know how you are struggling. best wishes for some answers.

My god, I'm so sorry to hear you're having to go through that. :( I'm pretty convinced now it could be all the herbs putting my immune system into overdrive / making the celiac so severe plus trace amounts of gluten I've been possibly ingesting in those herbs. I'm going to see a new Lyme doctor tomorrow to see what she thinks. I have a feeling I'll have to stop the herbs and start antibiotics, which is devestating news. But at this point I feel like I'm slowly dying of malabsorption/malnutrition and don't have much of a choice.

Thanks so much for sharing and I really really really hope you find some relief soon. <3

In Topic: Supplements

11 November 2012 - 09:44 AM

Yeah, I'm realizing that absolutely nothing processed is safe for me. I verified some mustard that is tested at 10ppm and still react to that. So I'm thinking I've been ingesting trace amounts without knowing for the last year. Now I'm worried that the damage from that might be significant. So where do people that are as sensitive as I am get their probiotics? For the last week I've just been drinking a bunch of my friends homemade kombucha.

Lyme disease is a huge mess. There's a lot of controversy surrounding every aspect of it, from diagnostics to treatment to even the existence of chronic lyme. If you were bit by a tick and got to a doctor within a few days, yes, antibiotics for 2-3 months is the standard and will do the trick. However, if you were bit by a tick without knowing and didn't develop the infamous bullseye rash (50% of cases don't) or if you were bit by a tick and DID develop the bullseye rash but when you were taken to the doctor he said "This looks exactly like the EM rash, but Lyme doesn't exist in Texas." and you were refused antibiotics and that bacteria stayed in your body for 20 someodd years before rearing it's ugly head, then no, 2-3 months of antibiotics is not going to do much at all. Most people catch it late and by then it has spread and multiplied to a ridiculous degree within their body and therefore they have to be on antibiotics for years and years, which is obviously not good for the body. When I was dignosed a year and a half ago long course antibiotics were illegal in Texas. There was 1 Lyme doctor in the entire state and he could only use herbs because of the law. I had the choice of flying out of state for treatment (couldn't afford) or giving herbs a shot. From all the reading I've done herbal protocols have the higher success rate anyway with late stage lyme (I can't remember exactly but I want to say it was somewhere around 80%, while antibiotics had a 40% success rate with 20% of those patients continuing to relapse) so I decided to try the herbal route first. If it didn't work I would go find a new doc out of state and begin antibiotic hell.

The herbs started working almost immediately for me. It was insane. I was bedridden by the time I got on them with half my body paralyzed (including my face, bells palsy) and within a week I was up and mobile and back at work. Herbal protocols work by putting the immune system into overdrive and from there the immune system suppresses the bacteria. Within 6 months of being on the herbs is when I started developing all the celiac symptoms. My new theory is that being on herbs and putting my immune system into overdrive may have set the wheels in motion for autoimmune diseases I'm genetically predisoposed to (2 aunts with lupus, 1 uncle with Sjogren's/suspected lupus, mom and grandmother currently being tested for celiac).

So. I am actually about to hit the road to see a new Lyme doctor. When I was dx'ed my friends were in uproar about the lack of treatment available here but I just shrugged and said that if this disease is spreading as fast as they say it is, then it's only a matter of time before someone in power gets sick and things change. Which is exactly what happened. Some senator (I believe) got dignosed with Lyme and next thing you know a bill passed into law legalizing long term antibiotics for lyme treatment here. Now there are 9 Lyme doctors in Texas. WOOHOO!

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