please excuse spelling grammar. soory this will be long, i know people struggle with long things, i do. but i have to write it in one go or my brain will explode and ill crash. so i have to write a long one.
since i got ill i have vivid flash backs to non traumatic events. completely irrelevant boring memories, and i have these intense falshbacks. never a traumatic event memory.
i also now have mild autism-like symptoms, dyslexia-like problems, ADD-like, sometimes i have an incredibly srong urge for no reason whatsoever to end it all that appears out of nowhere. adults are not supposed to get autism. feeling suicidal isnt supposed to begin instantaneously. the thing that stops the suicidal thoughts really well is salt and sugar. it works without fail. 2 pints of tea full of salt and sugar. nice cup of tea to cheers me up? its got nothing to do with cheering me up. its the salt and sugar and fluid. those three simple things have kept me alive.
i dont think we will ever fully understand ME or a whole bunch of other diseases until we start to look at these diseases as a group with many overlaps and comorbidities.
everywhere you look the same things keep popping up over and over
for example, THP genes have been implicated in ME, PTSD, Autism, Depression, Schizophrenia, maybe Fibromyalgia cant remember
5 HTT is another. implicated in ME, fibromyalgia, suicidal behavior, Alzheimers?, Autism, Depression, Sudden Infant Death Syndrome. the protein it encodes is involved in serotonin and sodium. do we have salt problems?
indoleamine 2,3-dioxygenase is implicated in Fibromyalgia and PTSD. what did Ron Davis just say is elevated in ME? indoleamine-2,3-dioxygenase
@Rose49
look at the possible connection betwen indoleamine-2,3-dioxygenase and Vitamin D.
@charles shepherd we often have low Vit D. maybe this is part of it.
there are overlaps everywhere and i dont think these are all by pure chance
i have the mixture of ME/NMH/EDS-HT/mast cell issues, and the only thing that has helped me is mastcell treatment. antihistamines, antileokotrines, dexamethasone, berberine (treat berberine with great caution), mast cell blockers (Dr Theo)
all my syptoms improved at the same time. ME/NMH/EDSHT/flushing. also my ankylosing spondylitis pain in sacroilliac joints vanished overnight.
@Jonathan Edwards
my EDS symptoms - droopy eyelids, joints popping out, zebra lines, etc, and my sacroilliac pain rise and fall in tandem. my SI joints are fused but they are agony. antihistamines is better than Enbrel for my Anky Spon. it appears that mast cells are found in the synovium in anky spon. mast cells are the only cell that contain preformed TNFa ready for release. Enbrel blocks action of TNFa. ?? i dont know. maybe just a coincidence again, but i know how to put my AS in remission and it isnt Enbrel. perhaps i dont have AS? i am HLAB27 +ve. several of my family members have AS, fused necks, fused SI joints. these same family members have other things, like dyslexia, ADD, depression, POTS, flushing and itchy skin, *PEM*, constant headaches, tinnitus, loose joints, food intolerances. We all have the same strange group of diseases.
the antihistamines etc also made my autism-like and ADD-like and dyslexia-like problems vanish as well. my permanent headache and tinnitus vanished as well. my blurry vision improved. my jaw stopped aching.
a lot of this isnt new. most of it has been on P.R. in the past. Cort Johnson was talking about indoleamine 2,3-dioxygenase/tryptophan years ago with regards to Fibromyalgia.
Rich Van K was talking about similar links between Autism and ME ten years ago.
a lot of the mast cell stuff from Dr Theo is relevant as well
recently i saw on here a thread about RCCX gene complex and Dr Meglathery
@stripey14 that went down like a lead balloon. maybe she is on to something with the connection between diseases that seem really unusual. dont be so quick to dismiss. she has ME/etc. she herself and some of her patients have benefitted greatly from antihistamines, berberine etc. it might be coincidence, but some of her theory relates to CAH (congenital adrenal hyperplasia). two things with CAH are salt wasting and dexamethasone. salt keeps coming up in ME, and i benefitted from dexamethasone. IV saline helps me for a couple of hours. dexamethasone alone stops my abdominal pain, stops my bladder dysfunction, stops blurry vision, stops my *non-traumatic flashbacks* and stops my *dyslexia-like symptmos*. after dexamethasone i can spell and write perfectly
then i see a gene connected to CAH is influenced by both dexamethasone and berberine. then i see that berberine stops rituximab killing b cells. one of the genes in the RCCX group has been implicated in EDS-HT and anky spon. maybe that explain my EDS and AS rising and falling together. its not hard to find connections concerning CAH, tryptophan, adrenocortical hormones, HPA axis, metabolism, oxidative stress, mitochondria. i guess it all depends how far down the rabbit hole you want to go, or if you like Kansas.
i have been treated with rituximab, not responded yet, its been 7 months. this is why im not experimenting again at present with mast cell treatmemnt. i want to give the ritux alone a fair chance. berberine and ritux dont mix. pure pure speculation - supposing dexamethasone and ritux dont mix?
however, after my infusions, after a two or three days, i felt so much nbetter. it was a shock to feel so good. havent felt so good for 10 years. i dont think this is coincidence. dont even try to tell me its placebo. if i responded to placebo i would habe been cured a thousand times over. with the ritux you get all the drugs to reduce reactions to infusion. what are these drugs? Dexamethasone and antihistamines. No surprise there then
in two days i went from severe to mild. then back to severe again. this isnt normal.
look at the calcium channels and Sonya M-G in Aussie. its not hard to find calcium channel problems in other diseases like autism, dementia, alzheimers, vasculitis, fibromyalgia. there is an anky spon related gene involved in calcium channels/immune regulation.
this may raise the question that i dont have ME. thats possible. this is important baecause i was diagnosed by a well known ME doctor, and i fit the canadian and international criteria perfectly. if i dont have ME then there is a big problem with diagnosis right now.
i think that if people start to look at all these diseases as a kind of spectrum, or at least pay serious attention to the overlaps, we might make a bit more progress
maybe im unique. i dont know. all i can say is that for me personally dealing with mast cells has improved about 15 different diseases that i have, some of which are best described as "physical", some that are regarded as "psychiatric". if all of my 15 or so diseases all improve greatly at the same time it cant all be coincidence.
people on other forums are saying similar things. EDS forums, mast cells, autism. have a look around. even bits and bobs on schizophrenia and anorexia forums that seems a bit too familiar. i know somebody with schizophrenia who responds greatly to antihistamines. you wont find that in many of the text books.
soon i wil try out the mast cell treatments again because im ready to give up on rituximab. i'll let you all know if i respond or not this time around
take care. be as well as you can be.
PS Janet D, if you read this, please say thanks to Ron for the fantastic work he is doing
