I have chronic lyme and developed a symptom - sudden onset of very red and hot face, sometimes ears too.
I also have HSV1 and I am wondering if either or both could be the culprit.
The red hot face was so severe one time a rash started down my arms. Eventually doctors told me to get checked for carcinoid syndrome. Fortunately the test for that came back negative.
Posted by Bartenderbonnie (Member # 49177) on :
Check out the BEST collection of Lyme rashes anywhere.
Scroll down to Borrelial Lymphocytoma of the earlobe.
Thank you for your reply. I looked at the photo that you referred to. My ear doesn't swell but for years I've had the burning hot and redness in my ears that goes away after an hour or so. It's so hard to see photos of what people go through with this despicable disease(s).
Posted by Nancy Loube (Member # 46946) on :
quote:Originally posted by Lymetoo: Check out the info in this thread. It could be Mast Cell Activation Syndrome.
(One of the things they try to rule out is carcinoid syndrome .. so you got that part done!)
Thank you for your reply, Lymetoo. I started reading the links in the thread you recommended. This sure does seem like what is going on with me. When I have one of these episodes I can't find a correlation to what triggered my symptoms although I suspected emotional stress seemed to play into it, but other times I couldn't sort it out. Exercise, heat, food, they could have all been the culprit. Now after reading a bit I realize that any of those plus more things could be triggers.
Based on one of the articles, it is best to look for an allergist that is familiar with it. I will be doing that for sure.
(I was so glad to have the carcinoid syndrome test come back negative. Even the allergist that recommended I see an endocrinologist and my LLMD were relieved.)
Posted by Lymetoo (Member # 743) on :
Yes, emotional stress will do it .. and foods you didn't realize you were reacting to.
Exercise and heat are big triggers for me.
Posted by LuBee (Member # 46946) on :
Hi Lymetoo,
I am again seeing a naturopath whose practice focuses on lyme. She also treats MCAS and feels that it is what I have. She is having me tested for mycotoxins because she said that can cause MCAS as well as lyme. Also to start she is adding some detox supplements, DAO, and Histaquel (Researched Nutritionals).
Currently I am on pepcid (recommended by naturopath) and allegra (recommended by allergist)as well as amoxycillin suspension for peripheral neuropathy (prescribed by my LLMD)which seems to be helping a lot.
I just had blood work (these lab results were fine in June) my Creatinine is high, eGFR If NonAfricn Am is low, and my albumin is high.
Do you have any information why these (kidney related) readings may be out of wack?
Thank you for any insights you can offer on this.
Posted by Lymetoo (Member # 743) on :
Did you post your kidney tests here?
Posted by LuBee (Member # 46946) on :
I didn’t post the actual numbers and the tests that I had were routine lab work from a wellness visit. When I looked them up all three abnormal results indicated kidney involvement. Here are the specific tests with numbers.
Creatinine 1.03 high .57 - 1.00 normal ieGFR If NonAfricn Am 57 low <59 normal Albumin 4.9 high 3.8. - 4.8 normal
Posted by Lymetoo (Member # 743) on :
Hmm...not too bad. Just ask your doctor about it and what can help reverse the current course.
Posted by LuBee (Member # 46946) on :
Thank you for taking a look. I will be asking my LLMD and naturopath what they think about it.
May I also ask if you know of any correlation between Lyme and high cholesterol?
Posted by Bartenderbonnie (Member # 49177) on :
I printed this explanation offered by 2 of the most respected LLMD’s. I hand it to my primary doc at every 6 month wellness check-up. Primary always looks at my blood labs, mentions my wonky cholesterol numbers, and goes into his spiel about how I need statins. (no way)
“Patients who have/had Lyme Disease often have significant abnormalities in their lipid metabolism.”
“We believe these elevations in cholesterol are not only related to diet and genetic predisposition, but also from chronic inflammation and prolonged activation of inflammatory cytokines caused by infections.”
Posted by LuBee (Member # 46946) on :
I printed this explanation offered by 2 of the most respected LLMD’s. I hand it to my primary doc at every 6 month wellness check-up. Primary always looks at my blood labs, mentions my wonky cholesterol numbers, and goes into his spiel about how I need statins. (no way)
“Patients who have/had Lyme Disease often have significant abnormalities in their lipid metabolism.”
“We believe these elevations in cholesterol are not only related to diet and genetic predisposition, but also from chronic inflammation and prolonged activation of inflammatory cytokines caused by infections.”
Thank you, Bartenderbonnie. This is very helpful. My LLMD is not so literate in this and some other things. He doesn't prescribe natural things. I am now seeing a LLND as well that I had seen a couple of years ago. I plan this time to stay the course and not let crazy symptoms get me confused. Posted by Jessig627 (Member # 36240) on :
My suggestion would be to get checked for Mast Cell Activation Syndrome.
I was diagnosed with it in the fall.
One of the symptoms I had was a sudden onset of a hot, red face and neck and bright pink lips.
I currently take the histamine inhibitors in hopes of bringing something under control as well as an elimination diet.
Wishing you the best!
Posted by LuBee (Member # 46946) on :
quote:Originally posted by Jessig627: My suggestion would be to get checked for Mast Cell Activation Syndrome.
I was diagnosed with it in the fall.
One of the symptoms I had was a sudden onset of a hot, red face and neck and bright pink lips.
I currently take the histamine inhibitors in hopes of bringing something under control as well as an elimination diet.
Wishing you the best!
Hi Jessig627,
Thank you for your response about MCAS. I hope that you have progress in getting some of your normal life back. Do you feel that your MCAS is from lyme? How did you find someone to test for it?
After Lymetoo's response to me about MCAS and reading Dr. Afrin's book in June I started a low histamine diet and then had an appt with an allergist who did testing (tryptase) for MCAS. A couple of tryptase tests later shortly after a symptom cascade I didn't have a rise in the level. So he just said to take an H1 blocker which I was already taking. Even though I knew from Dr. Afrin's book that only 15% of people with MCAS have change in tryptase. So I moved on.
Then my LLMD said that he thought it was autonomic neuropathy. So I tested out that opinion and went off the H1 blocker and had a high histamine food. Within minutes I had the symptom cascade.
Finally I went back to a LLND who I had seen previously in 2018-19 for lyme. She treats for MCAS as well. She believes I have MCAS and has ordered a mycotoxin test and some other supplements such a DAO. She said that molds can be responsible for MCAS as well as lyme.
So that's where I am now, waiting for the mycotoxin test and the supplements, and on a low histamine diet and histamine blockers. That seems to be managing the symptoms okay at the moment. I was even able to do some exercise without the symptoms erupting. The LLND said that she has seen MCAS reversed, so that is hopeful.
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