I had a biopsy a decade ago that showed eosinophils in upper endoscopy and was told to look into it, but I never did because I was dealing with my lyme diagnosis and issues, etc. I just had another EGD and after 3 opinions the newest lab found the eosinophils again.
I am just wondering is anyone else here has this??? It's supposed to be be rare, but as with other things the med. community knows little about, it may turn out to be not rare- I suspect.
apparently 1 in 10,000 people have it. When I hear another test or Dr. tell me I have something 1%,or rare, my mind immmedialy says "LYME".
I tried searching for info on it associated with lyme, but not much found.
The current eosinophils treatment is high dose steroids (which I do not want). The main complication for Eosinophilic gastroenteritis is malabsorption. I have definitely had an issue with not absorbing nutrients for probably my entire life, or at least since having lyme and cos, which could be my entire life.
the other link I am trying to look into is Mast Cells since I have a DX of MCAS.
The GI dr. is testing me for parasites to rule that out. I did remind him I have lyme and he said no such thing as chronic lyme and I reminded hi mthat I first went 15 years untreated and how I almost died form tick diseases but I am sur eit fell on deaf ears.
I will def. mention this to my lyme dr. but I don't see her for another month and chances are she knows little. ?? IDK
Anyone know anything about this thing?????
anything at all is appreciated!
Posted by Razzle (Member # 30398) on :
Check out apfed.org - you might find more info about Eosinophilic disorders.
Take care,
Posted by map1131 (Member # 2022) on :
My husband developed Lyme disease a few years after I did. I had him in my doctors office within several days after the symptoms started and demanded he be put on high doses of abx.
His symptoms disappeared in the exact order that they came on. Within 6 weeks he was back to normal.
Except he has serious gerd symptoms. The symptoms continued to get worse even with treatment and he finally was seen by a friend of ours who is GI doc.
Endoscope showed heavy scarring throughout his esophagus. His endo pics are horrible. I've always suspected it was Lyme & co that has done the damage.
I tried to get our GI to have the lining tissues lab tested for bad guys. But I'm just the crazy Lyme lady, so it never happened. He has a endoscope every 5 yrs because of what is dx as Barret's Esophagus and the next stage is cancer.
My husband is in the room quite a bit when I'm doing Lyme & co rife treatments. His condition has not advanced and I like to think, I'm helping control the situation.
Pam
Posted by LisaK (Member # 41384) on :
thanks RAZZLE, I don't see anythig on that site that gives reasons for getting this. It has every other info but that, so thanks for sending it!
I am curious because my dr told me they don't know why people get this, but on so many support groups they say it is all from parasites!
Posted by LisaK (Member # 41384) on :
map! that is crazy! any good lab can do this test! why would they deny it I wonder.... thisis something Ithought they are suppose to count automatically.
Why would any GI do EGD and NO biopsy snips???
Posted by map1131 (Member # 2022) on :
Lisa, they did bioposy. But only for their normal things. They didn't do a lab that could look for Lyme, bartonella, etc.
Pam
Posted by LisaK (Member # 41384) on :
MAP, then if they did biopsy you can request they retest at the lab for anything you want. I think its a law they keep your tissue for 10 years and some keep it longer. my MCAS DX came from a 15 year old biopsy that was redone.
I am getting a new EGD Friday.
I am feeling nothing about it right now. I am getting real apathy for my own situation.
Posted by LisaK (Member # 41384) on :
My MCAS dr. now told me the eosinophils are entirely mast cell related.
I know that no 1 dr. can possibly know everythign, but I am siding with him this time as I know I had them almost 20 years ago in same GI and at that time had allergy DX of almost every single food, which now I know was really mcas.
Dr. wants me on low does chemo (name escapes me right now) but I don't really want to do that , BUT in my FB support groups there are many who have done and had favorable things to say.
But, now my insurance wont cover it, so now what?
My GI dr. said the only known "cure" is steroids, which I do not want at all.
Posted by Lymetoo (Member # 743) on :
Why won't insurance cover the chemo drug? Do you need a diagnosis by a mast cell doctor?
Posted by LisaK (Member # 41384) on :
my mast cell dr sent the RX in . he said sometimes they don't cover it. I am ont sure why they didn't as the letter didn't reallly say. I left dr office message but no answer yet.