I am new on here.. I have a patient, went to Colorado for a little over a week. Off trails, camping outside every night, dog slept in her sleeping bag, etc. She comes home and within 12 hours of getting home, she is woken up from her sleep. Difficulty breathing, rash all over her body, aches, fatigue. She went to a doctor, was given steroids and H2 antagonist. Felt a little better, rash never went away completely. Within the next month, had various symptoms including racing heartbeat, difficulty breathing, anxiety, rash still and worse at times. Then the neurological stuff, one sided facial droop only a few occasions, numbness tingling in hands, difficulty concentrating, foggy mind, palpitations, etc. I had a lyme's disease test done, antibody screen was high, and the IgG band 41kD was reactive, that was it. This test was also completed 5 days after starting doxy. Completed 21 days doxy. Some neurological symptoms, but mainly the persistent rash. Completed another 21 day therapy. Neurological symptoms gone, breathing is better at times, but the rash is still there. It changes, sometimes it looks like hives, sometimes more disseminated. I could not control with benadry, zycal and Pepcid. I sent her to a dermatologist. High dose steroids were given, short acting and long acting. Rash got worse, very angry, itchy rash. With more Benadryl, zycal, zytec, and Pepcid it has calmed down a little, but still there. I have no idea how to get rid of this rash. I spoke to three doctors about this rash and all believe it is hives from an allergic reaction. I am wondering how long it will last, if it is an allergic reaction or if it is post lyme disease rash or even a new alpha gal allergy that can occur post lyme. I just know now that my patient has had this rash for going on 6 months and I cannot control it. I do not know what else to do. She is miserable, it wakes her up at night. Worse in the morning and the evening. She is taking 6 benardyl a day to try to manage symtpoms, (I obviously asked her not to take that much). Any advise or help would be greatly appreciated. Thank you.

I will definitely look into that! I know the first physician she went to had her on singular. But she only took it for about a month. Rash was still there, but although back then it did seem more controlled. It does seem to be getting worse everyday.

Steroids are contraindicated with Lyme and coinfections. That may be why the rash came back angry. Steroids suppress the immune system and allow the microbes to get an upper hand.

MCAS is very likely. There’s a bartonella specialist who specializes in MCAS treatment. His website is https://tmgmd.com/mcas/. You may find helpful information on the website or you can contact him for guidance.

Alpha-gal is certainly something to consider, as you mentioned. Here’s an article on alpha-gal.
https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5932728/#section4-2150131917705714title

Thank you for caring enough about your patient to seek help. Much appreciated.

I only tested positive for band 41 with Labcorp, but my DNA Connexions test was positive for borrelia and ehrlichia. Band 41 is from flagella of a spirochete. There are only a limited number of spirochetes. Even if she had no positive bands, with her symptoms and details of onset, there is plenty indicating a high likelihood of tick born diseases. Early treatment until a couple months past symptom resolution is the best chance a person has. Other tick borne infections have to be considered. It’s never just borrelia.

Also, maybe consider western blot with another lab - like Igenex or MDL.

Band 41 is the flagella (tail) of a spirochete. Lyme and a few 'other things' could produce that band.

Her symptoms certainly sound like Lyme disease....and they started after camping in the wilderness.
I would send her to a LLMD. That is a Dr who specializes in diagnosis and treatment of LD.

We can help you find one: Start a new thread: "Looking for LLMD in/near _________" Fill in the blank with the city/state.
Alternately, you can also email me. I can check my list for LLMD's and send you info.

Here's a questionnaire that the patient can do:


https://www.eomega.org/article/is-it-lyme-disease

If my patient is experiencing MCAS, is there any resolution to this? Or will she need to remain on H1, H2, and mast cell stabilizers the rest of her life? Can this improve? I am trying to read more on it but it almost seems to get worse before any relief can occur.

Someone just posted on my local holistic facebook page about getting chronic hives after COVID. It does seem that hives after virus/illness is somewhat common. My brother-in-law has had them since Christmas after some viral illness too. They seemed to be partially managed with a cocktail of h1/h2 blockers. He has serious gut issues, which makes me wonder if there is more going on with the gut (immune system). Maybe a low histamine diet, possibly supplementing with DAO will at least lower her histamine load and thus stop the chronic hives.

Thank you! I really appreciate all the help! It does help to know that these are some common occurrences after Lymes. Should I ask my patient to carry an epi pen? It seems the rash was progressively getting worse. Although, now starting a mast cell stabilizer, I hope the hives start to improve.

Joy,

If the underlying cause is tick borne infections, then yes are you are treating the symptoms and not the cause unless you are also treating her for the infections based on clinical diagnosis. Treating infections and symptoms simultaneously while avoiding environmental toxins is the way to go. Is cromyln the only thing she’s taking? She probably needs a variety of meds/supplements. Is she taking any antihistamines like Xyzal or H2 blockers?

IMO, itchiness under the skin is a problem. I would increase the dose or add something else to stop the symptoms.

Regarding finances, treating Lyme and other tick borne diseases is expensive whether you have insurance or not. Few LLMD’s take insurance, because insurance does not allow them to effectively treat patients. Insurance is good for lab testing with Labcorp or Quest or OATS test with Great Plains and maybe some other labs and for prescription drugs.

If you are willing to help her, you might be able to consult with an LLMD on what to do and order tests, prescribe meds, to the extent you are able. This is a tough illness to deal with, and I know of no easy, affordable solution. One idea is to set up a Go Fund Me page or some other fund raiser. I’ve never done that, but some people do.

The books, “Toxic,” by Dr. Neil Nathan and “Healing Lyme” 2nd edition by Stephen Buhner may help both of you.

Post Edited (WalkingbyFaith) : 7/3/2020 10:56:34 AM (GMT-6)

Thank you both so much! Yes, I have her on xyzal. And mirpetizine at bedtime for anxiety and sleep. And the cromolyn of course. We did have her on singular but stopped that a couple months ago when I was trying different combinations to help with the hives.

I will definitely have to get the books. This is just not my specialty and it is very difficult to treat. I consulted infectious disease, dermatology and even spoke to my Intensivist at the hospital. No on knows really how to treat it. She does need a specialist. I will keep looking, the go fund me might be helpful. I can ask on another forum, but do either of you know a specialist in the Orlando Florida area?
Again, thank you both so much.

My practitioner is Beth O’Hara at mastcell360. Maybe you could just consult with her? Since finances are tight for client? She treats root cause but unfortunately does not accept insurance.

Have you tried supplementing dao? The umbrellix or seeking health brands are good.