How I found the underlying cause of my CFS--anti NMDA antibodies

[YippeeKi YOW !!]

Thank you for the compliment. However, I'm not sure why you think I'm the expert in prescription drug use and not botanicals

I didnt mean to imply that, only that you really know your stuff ... life gets more difficult when I have to defend myself against what was intended as a compliment.

 

[Learner1]

I didnt mean to imply that, only that you really know your stuff ... life gets more difficult when I have to defend myself against what was intended as a compliment.

Thank you very much, then! I typically will try natural treatments first if at all possible, however, I've learned the hard way that sometimes only a pharmaceutical intervention gets me to where I need to go. So, I think a large toolbox of tools is important.

 

[YippeeKi YOW !!]

I typically will try natural treatments first if at all possible, however, I've learned the hard way that sometimes only a pharmaceutical intervention gets me to where I need to go.

I agree, as I more or less stated in the first line of my response to @Violeta :

Like you, I avoid prescription drugs and protocols like the plague, but sometimes needs must.

So, I think a large toolbox of tools is important.

Again, I agree. I don't dismiss anything out of hand, but I'm trying everything I can before I restart the endless, difficult, demanding, and not inexpensive search for a Dr who either understands this illness, or has at least heard of it as something other than the punchline to a joke, and is willing to listen to their patient and learn more.

 

[YippeeKi YOW !!]

This one has so many clues. Thank you!

You're welcome !!! I hope it helps .....

 

[Broken.butterfly]

Yes please do PM me the names - thanks.

Please could you PM me this list? 🙏🏼 Many thanks

 

[Broken.butterfly]

Would you kindly PM me the list please? How are you now? So sad about Shawn

If you're interested in getting tested for neuroautoantibodies, I know a few private doctors who'll refer you for the testing on the NHS. I'll PM you if you like.

You need to have obvious neuropsychiatric symptoms that would suggest a potential role for GABA or glutamate but you have that so it shouldn't be a problem!

 

[Aidan Walsh]

Would you kindly PM me the list please? How are you now? So sad about Shawn

I am interested I would like to be tested as well thank you for posting Broken. butterfly. Are there any labs privately aside from NHS in the UK/Europe where I could request this testing & if yes about how much the cost is of testing this? Am I allowed to leave my email here? mraidangwalsh@gmail.com

 

[Aidan Walsh]

I believe that he is talking about "Lemtrada" (Alemtuzumab) but I could be wrong. @SK2018, please let us know how you are doing when you have a chance!

Also @pibee, how are you doing? I haven't seen you post in a while and hoping you are okay.

I wonder if this is the drug being used by HATS patients in Paris, France for Hereditary Alpha Tryptasemia Syndrome multiple copies of the tryptase Genes found by the NIH/NIAID 2016 published in Nature with Manchester Immunology Group together.

I think this medicine if it is this one is used in some type of I think severe Mastocytosis, there is a French Group on Facebook some are getting this drug.