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.
@Belbyr My “like” of your post is for support and not b/c I like what you are going through. I was in a somewhat similar situation and concur 100% with KangaSue re: doing the paraneoplastic panel from Mayo (and can’t imagine that Dr. Klimas would not order it).
If you are positive for any of the autoantibodies, they correlate w/different potential cancers so you know where to start (which in my case was a high resolution lung cat scan). My case turned out to be autoimmune and no cancer was ever found (and it’s been over three years).
Yes that could be the case, two issues. While I hope it is not, at least these things are starting to explain some things. This info couldn't have come a minute sooner as I have a PICC line keeping me hydrated and food is very sparse.
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 have done (and am still doing) Rituximab in addition to the 2 yrs of IVIG but I have never done plasma exchange (in any form). It's probably better if you send me a PM and I am happy to help in any way that I can (even though each person is unique and nothing I say would be medical advice which of course you already know)!
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.
I am back from the appointment and it did not go exactly how I thought (or how NOVA's initial letter sent to me) it would go. It was quite a long appointment. Klimas was probably there for 45min-1hr and the rest of it was with the nurse practitioner.
Klimas went over the initial letter and kinda in a way scratched the thought of my condition being autoimmune or cancer... She said she does a 'general' immune panel on all her patients and my panel (besides the low IGG) is similar to the other CFS patients. We are going to try to get my 23&me data to her sometime soon. She said they have over 800 patients in the system now and the preliminary findings she said are 'very interesting'.
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. I would have found that a lot quicker had I been fainting, or feeling like I was running a race just doing everyday things...
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. With the gastro issues being my top worst, I am really really hoping she can do something. I'm down 20lbs in the last 1.5 months and as mentioned before, I'm confined to my bed or on the floor beside my bed while my parents have to do just about everything for me.
We are also trying to attain stomach biopsies from past endoscopies to send to Dr Chia to see if I have virus in them. As I posted earlier I have a weekend immune system (Low total IGG, low subclass 1, and at times low subclass 3) I also have some elevated virus titers but not sure if they are active or not. They are thinking there is a chance there is viral reactivation going on in me.
I'm also supposed to go see a cardiologist in the area to be re-evaluated for my POTS and do a blood volume test at the Cleveland Clinic here in Florida. I don't think there will be any surprises here but the blood volume test could be interesting. 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...
NOVA has started a new program on CFS education, pacing, documenting activity levels, sleep, etc. 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. Who knows, I'll give it a shot if I can... or I can just show up on the floor is agonizing pain holding a trash can to my face like most of the time now.
I was not really able to ask general questions about the clinical studies, new concepts, potential treatments, etc. I might be having a follow up with Dr Klimas later, that is to be determined.
I'm still baffled by the elevated B cells, elevated NK cells, and inflammatory markers. This just does not seem right. I feel like my body is fighting something, some days more... some days a little less. Maybe it's fighting myself???
The journey continues but mentally I continue to get weaker. I'm seeing a phycologist on the side, who I happen to like. 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.
@Belbyr you seem to have an awful lot going on. From reading your posts I think the most important thing is to work on your GI issues to try and find something that may help as you cannot continue to lose weight. I hope you can see the GI doc soon.
You might be desperate to try all these meds, but it is normally better to space dosing by at least several days apart (weeks to months between new medications is better but probably not an option for you) to try and figure out if a medication is helping or hindering.
FYI - Cromolyn stays 99% in the GI/Urinary system.
Maybe they are hooked on "POTS" as POTS is dysfunction of the autonomic nervous system, and as such addressing that perhaps could also have an effect on the GI system - I'm guessing.
Regarding therapy, you may find it useful tell the therapist what you want out of the sessions, and what you want to work on. Remember they work for you to help you! I know it is not mind over matter, but techniques to calm the mind can help cope with this very stressful situation you are in right now.
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.
Do you know what the dose of the "low dose Atenolol" would be? I take 12.5 mg of Atenolol both AM and PM and it was the only medication that stopped my episodes of extreme tachycardia which started when I developed POTS in Jan 2013. The doctors did not know yet that it was POTS but I was having episodes all throughout the day and night with my HR going into the 160's and 170's and it was literally not possible to function without the Atenolol (in my case). It sounds very different than your experience. Do you have tachycardia?
For me, my entire illness started with POTS, then a million other things happened, and then with treatment, the POTS was the very last symptom to finally get under control. I had things like Atenolol & Midodrine that masked the symptoms but they did not get to the underlying cause (which in my case was autoimmunity).
Even though your tests were normal, do you have MCAS symptoms? Also Cromolyn and Ketotefin are both mast cell stabilizers (and most people do better with one vs. the other and I did not tolerate Cromolyn but did very well with Ketotefin). Will you also be trying and H1 and H2 blocker?
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.
I'm not sure if I understand this part and the connection between being negative on all Cell Trend testing and having low IGG levels? Can you remind me why Dr. Klimas suspected autoimmunity when you were negative on the Cell Trend panels? Were you positive on Mayo Panels or other tests for autoimmunity?
Is the course 4-5 days in a row or spread out? Would it mean that you have to stay for a much longer period of time in Florida than planned? I'm curious what it entails and if it would be too much for you while so ill?
I definitely agree that your illness (or any of ours) has nothing to do with "mind over matter". Can your therapist help you with coping skills to deal with how having a chronic illness impacts your life?
I have been in the worst shape of my life, the last 48 hours has been me on the floor crying at a 9-10 in pain while throwing all kinds of drugs at it. I was able to pass out only to be worse this morning.
i still am not eating or drinking, I imagine I will be hospitalized soon. I really wish they could put me into a coma, I can’t take anymore. I hope this is not my last post but if it is, so be it.