Has the topic of possible mycotoxins been brought up by your LLMD for those of you who have not successfully gotten well years after getting sick?
I tested positive by Great Plains lab by urine test recently but am reading about other blood tests that allergy MDs do.
If you did get diagnosed for mold exposure how were you tested?
Posted by TX Lyme Mom (Member # 3162) on :
We have had our very best luck in treating mold hypersensitivity by finding an AAEM doctor who is skilled in intradermal (ID) provocative neutralization (PN) method of testing and treatment with individually blended antigens to various molds -- rather than "stock mold panels" which ordinary allergists use.
AAEM = American Academy of Environmental Medicine:
The results were immediate and dramatic -- like flipping a light switch! Impossible to imagine or to describe.
It's not cheap because each mold is tested for separately, which is a very time-consuming and labor-intensive process. Then your allergy shots (or sub-lingual drops) are compounded by a pharmacy just for you, individually, so that you will not risk being over treated for one mold while being under treated for other molds.
(Allergy shots are much more effective than sub-lingual drops because they get it into the tissues. But sub-lingual drops do have one main advantage in that the patient can control the dosage and the frequency of dosing more easily.
Ordinary allergists test and treat with stock panels of molds, which is easier and cheaper, but not nearly as effective, than testing for each mold separately.
That's why it's important to find an AAEM allergist, even if you have to commute a much longer distance to find someone experienced in this special method of testing.
The symptoms of mold exposure are so similar to Lyme symptoms that it's hard to discern what's causing which symptoms.
Living in a damp and moldy coastal climate sets one up for mold hypersensitivity.
We have had experiences with several different allergists and different methods of testing and treatment for mold allergies over the years. No other method comes even close in effectiveness to the AAEM's method of treating mold allergies than intradermal provocative neutralization (ID PN).
The patient in our family walked in sick as a dog early that morning and walked out 8 hours later feeling surprisingly well after the doctor had administered her precise "neutralizing dosage" before we left his office.
It's hard to describe how surprised we were because we had given up on ordinary allergists many years ago. What a pleasant surprise how effective this special method of testing and treatment for mold hypersensitivity can be.
Until then, I had been convinced that she was experiencing another Lyme relapse because the symptoms overlap so closely, but the mold allergy desensitization treatments really did the trick. Unbelievable, actually.
Posted by Marz (Member # 3446) on :
I checked the AAEM link and found only one MD in my state, but not nearby.
I have an appointment coming up with an allergy MD who tests by blood not urine.I talked with someone who studies fungi and is skeptical about the validity of urine tests.
Thanks so much for the link with podcast. I learned a lot.
Posted by daystar1952 (Member # 3255) on :
Can mold that is present in the fall affect mast cells and create stomach bloating and pressure along with a sudden high rise in blood pressure?
Posted by Marz (Member # 3446) on :
Besides just getting results for mycotoxins, I'm waiting for mast cell blood test results.
It's all a lot to try to understand.
Posted by WhitneyS (Member # 25666) on :
What the first replier is talking about is a mold allergy-- NOT CIRS, which is what most people with lyme and mold suffer from. So allergy shots wont be helpful to most-- you need to see a shoemaker or CIRS trained Dr. You will need to actually remove the mycotoxins from your body so that you can start to get your body to heal. Totally different body response than an allergy and requires totally different treatment. Google CIRS and your location.
Posted by Marz (Member # 3446) on :
Thx so much Whitney!
I wasn't going to allergist hoping to get shots, just for finding if I had mycotoxins in me. I talked to a person with PhD in fungi who said she questioned urine tests and was very knowledgeable about mycotoxins.
Allergist was a waste of time because he didn't test after being told he did when making appt.
BUT because you mentioned CIRS and I didn't know that's what it was called, I did some searching and found this which was so helpful.
quote:Originally posted by Marz: Besides just getting results for mycotoxins, I'm waiting for mast cell blood test results.
It's all a lot to try to understand.
- That won't be a very valid test unless your tryptase is high enough to dx you with mastocytosis.
Do you feel that you have a Dr who is able to diagnose MCAS?
--
TXLLMD .. That's amazing about the recovery!
Posted by Marz (Member # 3446) on :
I got results last week from LabCorp and tryptase, plasma histamine, chromagranin A were all right in the middle of normal range.
LLMD said it's a false negative. How does she know that?
I was even very stressed because my first ever Uber ride went wrong and stress is supposed raise results.
Posted by LisaK (Member # 41384) on :
yes. I have had my genetic counselor and my new llmd tell me about mold, but I already knew the news. need to get rid of mold .
we have been (had our house tesetd) doing things to help in the house like MoleKule purifiers, and using borax and a natural spray mold killer. it all seems to be helping, along with essential oils in a crock pot in the basement to kill spores.
I do detox too and infra red sauna helps A LOT.
I just got tested m=with my new LLMD and I am awaitign results for new tick disease (updates) testing via egenex, and mold testing , etc...
can't wait to find out results!
Posted by LisaK (Member # 41384) on :
oh , and have genetic testing that shows I have the gene for not being able to rid my body of mold like other people.... forget right now what that test is, but PM me if you like.