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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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In that case I would suggest having some blood drawn and sent to Mayo to run either their PAVAL or DYS1 panel to check for the antibodies that can occur prior to a cancer being big enough to be detected by other means (paraneoplastic syndrome) if this hasn't already been done.Well guys, 1 final test came in and I have B cell proliferation. No wonder I feel like death and can’t eat or drink.
I hope this is my answer!
It’s either cancer our autoimmune.
You may have more thsn one set of issues.
I just got to muscle through these next 5 days to get test results on hematology and 'fingers crossed' no cancer, then hightail it back to NOVA for treatment.
I agree and you definitely could have more than one issue going on and I am so glad that you have such a thorough doctor.
I am keeping my fingers crossed for you, too... Do you live far from NOVA?
@Belbyr Sounds like you are getting somewhere. IVIG has been helpful to me - my total IgG was below normal and subclasses 1 and 3 were low.
I agree about the tests @BeADocToGoTo1 is suggesting. You may have more thsn one set of issues.
I'm in Memphis, TN.
I don't know if this would be better in personal messages but how has IVIG helped you? How is life being on it and how functional are you?
Oh please, do tell! I would like to be informed as possible. Plasma exchange and Rituximab were mentioned as well in the letter so I don’t know what Klimas has up her sleeve.
Just curious, can you fly with special circumstances to meet your needs? Best to you in travels, let us know how your doingMan oh man my stomach has gotten so bad that it is just IV fluids for now. The pain and nausea... along with bloating is unreal.
I fly out tomorrow morning to see Klimas at 1:00 Florida time to see what treatment is going to consist of.
Man oh man my stomach has gotten so bad that it is just IV fluids for now. The pain and nausea... along with bloating is unreal. I fly out tomorrow morning to see Klimas at 1:00 Florida time to see what treatment is going to consist of.
Klimas went over the initial letter and kinda in a way scratched the thought of my condition being autoimmune or cancer...
They are still hooked on my POTS (in my opinion it's not that bad). We are going to try atenolol in low dose to dampen the sympathetic nervous system. I honestly don't really like beta blockers because I feel slightly lightheaded with them and they don't do anything else for my other symptoms.
It took me over 10 years to discover I had POTS because in my opinion, the symptoms are so mild.
We are also going to try the Mast Cell drugs (even though mast cell tests come back normal). So that will be Cromolyn and Ketotefin. I'm not too optimistic on these but we'll see, who knows.
They are setting me up with a gastro surgeon, who they really like in the area and have sent the problematic 'gastro-patients' to and seem to have some success. Apparently she is pretty thorough, knows the work Klimas does, and can think outside the box.
They did say that I have been one of the only patients to be negative on the CellTrend lab test, their idea is that it is because of my low IGG levels...
They want me to do it and it is a 4-5 day course with other patients. I'm a little turned off by this and honestly don't think I am well enough to do something like that.
I'm still baffled by the elevated B cells
The therapy is just not working and he agreed with me at the last appointment, something is making me this sick and 'mind over matter' is not going to cut it.