POTS and immune response

[Pistol]

I am sure there have been previous posts on this issue but I still want to ask about this subject. I am currently recovering from type B flu ( had type A 2 weeks ago ). The first fly went well since I was started on Tamiflu the first day, I hardly had any symptoms and recovered rapidly. This time the Flu symptoms are worse and so I am in a flare ( controlled with IV fluids, daily for 3 days last week ). 

What I am confused by is that every time I get ill I experience joint pains in all of my joints, along with stiffness. This is almost harder to take then the POTS symptoms. I do have arthritic changes in all of my spine and due to postural changes and fusion of my lower spine they suspect ankylosing spondylitis. I have researched this and found that I highly fit the profile for Undifferentiated Connective Tissue Disease ( UCTD ) since I have many symptoms like Raynaud's, pleuritic pain, arthritis, photosensitivity, GERD, joint pains, oral ulcers, occ rashes, vitamin deficiencies … My CBC shows low WBC and RBC and elevated ESR ( chronic ) however my ANA has never been elevated ( we checked many times ). 

I read that it we have a certain genetic predisposition any environmental trigger ( like viral infection ) can cause an improper immune response. So that leads me to believe that if illness triggers POTS it could be related to the improper immune response … no? 

If anyone here has autoimmune issues along with POTS ( @p8d ) what do you think about this? And should I see a rheumatologist to find out if my POTS could be autoimmune? My PCP has not referred me as of yet because my ANA has been negative. But if all other symptoms are there - what do you think? 

https://www.sciencedirect.com/science/article/pii/S1566070218300134

here is an article regarding this issue

[p8d]

I am firmly in the autoimmune causes pots camp.  My symptoms from the very beginning were similar to what you are describing from the flu.  I was sudden, post-viral onset which is like many autoimmune illnesses. I was told to get the blood tests for markers while in a flare.  Not easy when you feel terrible but that’s when they are more likely to show up apparently, certainly the ESR.  My wbc was low for years and finally came into normal range in December for the first time in 4+ years.  The very first Dr I saw after I became ill, other than PCPs, was a rheumatologist because my family is riddled with autoimmune diseases. Bloodwork didn’t show anything so I was sent on my way.  My joints were swollen a bit though and PCP gave me a medrol dose pack which helped a lot with everything except BP/HR. That, along with positive bloodwork a year later convinced a second rheumatologist to diagnose UCTD.  It was the bloodwork though that was the deciding factor in starting Plaquenil.  That helps a lot with joint/muscle pain/fatigue etc. but does nothing for BP/HR.  That was the first drug that helped anything for me but it takes months to see improvement.  I was tested for lupus for ~30 years before the ANA came up positive which just shows the deficiencies in testing in my opinion.  Unfortunately, rheumatologists seem very wedded to the tests in my experience.  A good one will treat without positive results and my current one would have likely done so.  My autoimmune diagnosis and positive Celltrend results convinced my PBM to approve SCIG which is starting to show some benefits too.  So much new research is indicating an autoimmune basis for many of us I really feel lucky that my Drs, cardiologist, neurologist, rheumatologist all think this.  My cardiologist suggested IG on my very first visit.  He was convinced my pots was autoimmune in origin.  Keep getting tested, ask PCP if you can try a short course of steroids and see if it helps.  I hope this helps!  

[dancer65]

My cardiologist and GP are convinced my immune system is to blame . All my symptons started when I got alopecia (hereditory) like you I was plagued with ulcers, eye styes , boils and excema , this continued through out my early teens got a bit better and then again after glandular fever. 

,My rheumatologist said he wouldn't bother checking bloods as often they come back normal when clearly there is a problem .

Over the years I  tried many different treatments to help my immune system but nothing has worked and I made the decision to not try anymore due to the  risks of long time immune suppression .

I hope you can get some answers to all of this 

Best wishes x

[Pistol]

Thank you both, @p8d and @dancer65. This IS helpful for me to know!!!!

[Guest KiminOrlando]

I concur. Blood draw while sick. I got a little better when I started Plaquenil, Methotrexate and a biologic. Finding a Rheumatologist who believes in making a diagnosis of sero-negative lupus or Rheumatoid arthritis or whatever is key. Many won't deviate from blood tests. It is a clinical diagnosis. I started out sero-negative, got meds that helped, then the bloodwork turned positive. 

I agree. There is a subset of this that is likely autoimmune. I was under treated for years. Now it has impacted my lungs.

[dancer65]

Pistol I have spent a lifetime trying to figure this all out ! Before the Internet  research was very time consuming . I believe my trigger was an accumulation of physical and mental stress, antibiotics and boarder line anorexia. Every time I get a virus off goes the CFS symptons and then the POTS big time .

 

I think the research into gut flora related to health probkems will become more important, I attended a very intresting seminar recently talk by a gastrenologist on current findings, it's an intresting topic .