Just had my first (and second) appt with Dr. Kaufman 2 weeks ago.
He's trully an amazing doctor. The appt lasted arround three hours, he went through each detail with me and in the end answered to all my questions with no rush at all.
We took some blood samples for the tests I wasn't able to get done in my country via insurance and even though I got a lot of them done, it was still pretty expensive, arround 3k.
On the second appt, all my results were ready and I did a SIBO test.
Turns out I had:
SIBO STRONGLY positive. (I had that test done before in Brazil and it was negative, Dr. Kaufman said from the begining he was pretty sure it was a false negative, and it turns out he was right, unless there's a false positive hehe)
MTHFR Mutation
Herpes Virus high IGG
Epstein Bar high IGG
CMV high IGG
Mastocytosis (not positive on tests, but he said he still suspects I might had it due to symptoms, specially allodynia)
What he prescribed:
LDN (Starting at 1.5 and up to 4.5 in fifteen days) for pain and general health.
Anti-histamines: Zyrtec, Claritin, Ketotifen for the Mastocytosis.
Rifaximin and Neomycin for SIBO.
10.000Ucg B12 Injection and 15Mg Folate for MTHFR.
Famvir for High viral titers.
And some suplements which I didn't start to take yet (If I remember correctly it was Quercetin, CoQ10 and Lipoic Acid)
(I'm also taking Lyrica)
I already started the LDN, Zyrtec, Claritin, B12 shots and Folate. The first week was ok, no side effects but now (begining of the third week) I'm feeling an worsening in my brainfog, gut issues and perhaps the fatigue, and no good effects until now (still at 3.0 LDN and just uped from 5 to 10Mg Folate)
I was staying for 2 weeks in a hotel, with not much of a good sleep, and having to go out to lunch and dinner, walking a lot more than I'm used to, going to crowded environments and not being able to take such good care at my eating habits as I can at home. And now I just got a 24 hours flight maratone with 3 planes to get to Brazil.
So probably this has been contributing to the worsening of my symptoms, but what puzzles me the most is the increase in gut issues, as it usually don't come together with PEM for me.
I also noticed something that looks like genital candida (which I used to have each 2 weeks something like 4-5 months ago, during a crash, but it was a while since I didn't got it) and I wonder if it could be the LDN causing it as I've read about that LDN/Candida relation in the past (and went through some of it now), but not sure if that's something to rely on.
So basically that's it...
Still waiting and hoping for good results. And if anyone have anything to enlighten me I would apreciate that.
I also hope this can perhaps help some of you.