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Posted 9/16/2018 3:16 AM (GMT 0)
Hello .. new here and have a general question. I had all the typical tick disease related symptoms but after much testing with no diagnosis (I did have the good tests) I sought help from another doc who thought I had mold illness. I was put on cholestyramine and it ever so slowly helped me with at best 95% improved symptoms. I stayed symptom free for about 6 months then they very slowly came back again. Could someone tell me what this means, that the binder actually worked - for a while anyway. If it WAS Lyme or tick related would it have? Can I assume it was mold and somehow I'm still exposed? I know this is pretty general but any opinions would be appreciated. I am so not enthuised about returning to any docs and getting back on that merry go round.
Posted 9/16/2018 3:44 AM (GMT 0)

Blue Roads said...
Hello .. new here and have a general question. I had all the typical tick disease related symptoms but after much testing with no diagnosis (I did have the good tests) I sought help from another doc who thought I had mold illness. I was put on cholestyramine and it ever so slowly helped me with at best 95% improved symptoms. I stayed symptom free for about 6 months then they very slowly came back again. Could someone tell me what this means, that the binder actually worked - for a while anyway. If it WAS Lyme or tick related would it have? Can I assume it was mold and somehow I'm still exposed? I know this is pretty general but any opinions would be appreciated. I am so not enthuised about returning to any docs and getting back on that merry go round.

Hi Blue Roads - Welcome !

Have you had your home tested for mold ? And your work place?

I think maybe start there. Others will be along to suggest the best tests.

So your Lyme WB was negative - do you have the results? even with a negative result there can be lyme specific bands that indicate an infection.
Posted 9/17/2018 5:08 PM (GMT 0)
95% improved from cholestyramine, that's pretty amazing. I'd get back to treating mold. Like Girlie was asking, have you had your home & work tested for mold? If not, Dr. Shoemaker recommends ERMI testing through Mycometrics.

I tested 4 times with Igenex before getting a positive Lyme result.

Post Edited (SoMuchFun) : 9/17/2018 11:11:42 AM (GMT-6)

Posted 9/18/2018 11:31 PM (GMT 0)
My work place (a private home) was guessed to be the culprit due to several diff probs w the home. Due to $ I did not test my own home but family investigated the entire home and found nothing suspicious. I transferred to another work home and all 'seems' OK there. I also appear to have cirs.
I have looked everywhere for my lab results and cannot find them. I know I questioned at the time the bands you all are asking about and nothing appeared to stick out. I had over $2000 dollars worth of labs ran and only a couple of them were a bit off. I was so sick at that time and just remembering how frustrated I was with all of it. I couldn't mentally take any more, not to mention the financial burden aspect.
I'm not sure what to do now but I know I can't just sit here with my head in the sand just hoping it all goes away. I guess I was hoping that you guys would tell me that if I got that much better on a binder then it couldn't possibly be a tick Bourne illness. Even if it is mold and cirs I can't afford to pay for the in depth testing of my home and I also can't afford to just move out. Sorry I'm unburdening here, I'm just really lost and feeling the impending doom. Thanks for reading.
Posted 9/19/2018 1:05 AM (GMT 0)
Even though, from my understanding, Lyme and mold problems are commonly found together, 95% improvement from cholestyramine sounds like some sort of toxins are the major factor. How long did it take you to get 95% improvement?

If you're desperate and have no money, maybe you could stay with a friend for a while? Or pitch a tent outside if the weather permits? Ive heard of people getting better through avoiding mold, both in terms of mold and lyme symptoms.

If you could do something to buy yourself some time, give yourself some breathing space, to let you sort your long term plan out. Just some suggestions, Im no expert

All the best!
Posted 9/19/2018 6:22 AM (GMT 0)
Maybe try the same treatment again? See how you feel?

Have you seen mold in your home?
Posted 9/19/2018 1:30 PM (GMT 0)
If you're able to make it happen, the ERMI mold test through Mycometrics is $290. This is the test that Dr. Shoemaker recommends. Many mold doctors won't treat you unless your residence has passed ERMI testing. The fact that you got 95% better with cholestyramine does point towards mold. Exposure in your home or at work could explain why you slowly regressed over a 6 month period. It doesn't have to be visible mold either. It can be in your ducting, walls, under linoleum, etc.

Here's some info on the test: https://www.survivingmold.com/diagnosis/ermi-testing/mycometrics-llc
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