Hi all, last month has been terrible, I don't know what to do to tell the truth :-/
2 months ago, I was on Disulfram (testing this drug for possible active Lyme) and trying Nalcrom (oral cromolyn).
Some of it improved me and I was really happy! My PEMs was low, I did more activity...amazing!
But then everything went away...
I got huge diarrhea from Disulfram (3 months without any problem!!!) and I had to stop it. Also Nalcrom was with problem - manufacturer stopped supplying it to the Czech Republic.
The improvement went still slowly gone...
I decided to peptides treatment (Thymosines and Semax) after some great news here on the forum. I also got a new supply of Nalcrom from Germany and NasalCrom (nasal cromolyn). I also started Huperzine A because my CellTrend results (I did Huperzine A in past without side effects).
As I began this, everything became strange. When I came out of the house I crashed with massive PEM for 4 days. It was different than before. Next week next PEM, harder and harder. I felt like completely burning inside. It was a crazy 14 days...completely bedridden, exhausted, inflammed...
That's why I stopped everything!!! I'm stupid that I started everything at once...
Now I don't know what caused it all and I can only speculate. I was trying to find out if anyone here had PEMs on peptide therapy, but forum was silent.
I dont know, which specialist to contact for peptides...
Few days ago, I did some treatment with NasalCrom, because a lot of pollen in the air...
And it made me a lot worse again.
Therefore, do I suspect that this deterioration can cause pollen? Or NasalCrom?
Im allergic to pollen for many years, but always without PEM. Is it possible that cromolyn can make it worse?
I never have a classic MCAS symptoms, I just react to everything with hard PEM and inflammation, and sure, my OI is also worse and worse.
Any MCAS experienced kindly people here?
@debored13 @Hd-x @leela ?
In fact, now I don't know what to do next completely...
I was really mentally strong, but this broke me a lot.
I'm still looking for answers...
- can peptides worsen some patients? what types of patients?
- could one drug work before and now make me sick? - Nalcrom
- can pollen cause hard PEM? Even though I'm on Nalcrom and Aerius?
The only positive thing that keeps me afloat is that my first book about our land comes out
The last thing I attach my last results of EBV, Mycoplasma and Lyme. I also have relatively high antibodies to Varicella Zoster (VZV).
EBV-VCA IgM <10.00 arb.j. (0.00 - 20.00)
EBV-VCA IgG 455.00 >> arb.j. (0.00 - 20.00)
EBV-EA IgG 5.07 arb.j. (0.00 - 40.00)
EBV-EBNA IgG 125.00 >> arb.j. (0.00 - 5.00)
Mycoplasma pneum.IgM 0.36 arb.j. (0.00 - 1.10)
Mycoplasma pneum.IgA 0.51 arb.j. (0.00 - 1.10)
Mycoplasma pneum.IgG 126.71 >> kU/l (0.00 - 16.00)
Borrelia b.s.l. IgM WB positive
p41 -
p39 -
OspC +
Osp17 +/-
VlsE -
Borrelia b.s.l. IgG WB positive
p83 -
p58 -
p43 -
p39 -
p30 ++
OspC ++
p21 -
Osp17 -
DbpA -
p14 -
VlsE +
(
I was on lot of Lyme treatments in past)
Cheers and thanks a lot for all support and opinions.
Martin