Topic: anyone with mold /MCAS issues try allergy shots to help??
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
just dawned on me with the help of a fellow lymenet -er that I used to get shots for mold but I stopped a few years ago becaseu my insurance stopped it, but now I am wondering if that is why I am having so many MAST cell issues and crazy SX ???? (on top of tick stuff, that is)
anyone???
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
The shots were only for desensitizing mold?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Mold desensitization shots turned our daughter's life around dramatically after she moved from a relatively dry area of our state to a damp coastal area where mold proliferates year round.
I'm not talking about indoor, household mold which can be remediated, but I'm talking about outdoor mold which proliferates year round and which you cannot get away from without moving to another climate.
I was convinced that she was experiencing a Lyme relapse, based on her symptoms, but she was absolutely certain that her symptoms were related to the damp moldy climate.
We found an AAEM (American Academy of Environmental Medicine) who was experienced with mold desensitization, who uses provocative neutralization (PN) testing for individual molds -- NOT a stock mold panel, like many ordinary allergists use because then you are at risk of under-treating some molds and over-treating other molds.
Sublingual drops are one option for treatment, but her doctor explained that mold shots gets the antigen into the tissues and stimulates the immune system more effectively.
Her mold antigens were made up for her individually by a nearby compounding pharmacy which her doctor recommended.
It's not cheap because this method of testing is time-consuming and labor-intensive, so insurance does not cover it because it is more expensive that routine mold panels, but it is "cost-effective" -- and the results were nothing less than amazing, immediate and dramatic!
She had walked into his office quite ill that morning, and she walked out well enough to make the long 5 hour drive back home that same evening, after a very long day of allergy testing, following her first mold allergy neutralization shot.
We cannot recommend this method of mold desensitization enough for mold allergies which cannot be avoided because they are prevalent year round in the warm coastal climate where she lives.
You can read many websites on the internet which recommend "extreme avoidance" of moldy climates, but not everyone is free simply to move to another geographical area. And besides, there simply are not that many climates where the outdoor air quality is guaranteed to be perfectly clear and pristine year round.
To find an AAEM doctor in your area, there is a doctor referral search function on the AAEM website (link below), but these doctors are few and far between, so you can expect to travel longer distances, even out of state, to find someone qualified in this unique method of testing and treatment.
Remember though, it is absolutely essential to look for the key terminology of "PN" (for provocative neutralization) when you search through the list of doctors for your geographical area.
Also, remember that ID (intradermal) shots are considered to be more effective than sublingual drops -- although sublingual drops are indeed another option which some patients prefer.
Either way though, whether desensitization shots or sublingual drops, each patient's antigens are prepared for him/her individually by a compounding pharmacy who specializes in this method. Refills of antigens can be mailed to you, usually on a monthly (or perhaps quarterly) schedule.
Symptoms of mold allergy and Lyme symptoms are often very difficult to distinguish, so don't just assume that all of your symptoms are due to chronic Lyme or to a Lyme relapse.
I'm not sure how or why a history of a tick bite followed by chronic Lyme disease sets one's immune system up for being so highly reactive to molds, but I think it probably has something to do with cytokine imbalance. The popular book "Toxic" by Dr. Neil Nathan discuses this topic, but i can't remember his explanation well enough to summarize it easily.
Posts: 4563 | From TX | Registered: Sep 2002
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
TX lyme, OH YES!!! I know exactly know what mold you are talking about!! I can smell it as I walk from my car to my front door every day of my life. super yuck! I recently saw a new LLMD and brought this up.. I will def. peruse it more as my apts. progress.
I recently said to my husband, how I should have moved to Colorado in my 20s when the allergist told me to! oh boy.. if only
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Lymetoo, no I had a lot of shots for different things, but I have alwasys tested VERY SEVERE allergy to mold since I was in my 20s
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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