JuneFlower Posted February 19, 2014 Report Share Posted February 19, 2014 My daughter just gets everything around infection wise. If I have a virus, 24hr later, she will have it. My son and husband don't get sick much at all. I tend to get stuff but I deal with it better. I'm not sure if it's because I am older and just push myself more or if my daughter gets a worse case of everything. But I am wondering if anyone out there gets frequent infections? Is this because of the POTS and low blood pressure? Seems like a weird connection.June Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 19, 2014 Report Share Posted February 19, 2014 Hi June,I don't know if you have looked into ME/CFS much but there is a lot of overlap between POTS/OI and ME/CFS. People with ME/CFS tend to have an immune component to their disease however. I'm attaching a couple links to the latest International Consensus Statements and a Medical Provider's Primer on the topic. Being an RN you might find them helpful and informative.Edited to take the links out, they didn't work. You can find the working links in a latter postCorinaI was diagnosed first with POTS/NMH etc, but after reading the above info, I saw an ME/CFS specialist (immunologist) who ran further tests showing defects in the immune system. He said his ME/CFS patients tend to fall into two categories: those who rarely get sick (even with immune deficits) and "those who get pneumonia when I sneeze". Since your daughter sounds like someone who might be in the latter category this might be another area to explore. I think Dr. Stewart does research in both areas (POTS/CFS) to some degree so you might ask him about this too. Happy reading. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 19, 2014 Author Report Share Posted February 19, 2014 Chaos- hi, thanks so much. I will look into this. The links didn't work. Bummer. I appreciate the info you gave me. I didn't think of CFS.June Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 20, 2014 Report Share Posted February 20, 2014 Sorry they didn't work. I'll try again.http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/fullhttp://www.iacfsme.org/portals/0/pdf/primerfinal3.pdfIf they don't work, try doing a google search for the Myalgic Encephalomyelitis International Consensus Statement 2011. It was written up in the Oct. issue of Journal of Internal Medicine that year I believe.Also, you can Google IACSF/ME Primer for Medical Practitioners which came out in 2012.They both have a ton of very helpful info with specific labs, abnormal markers etc that have been found in ME/CFS patients. Being an RN you might be able to get some local docs to help run some of these. If she has this, there have been some new studies out recently that suggests the disease "changes" at about 3 years so people have the best chance of recovery with treatment in that time frame. Other docs report anecdotally that treatment within 5 years is acceptable. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 20, 2014 Author Report Share Posted February 20, 2014 Yeah I don't know. She gets a lot of infections. She has fatigue but she can't sleep at night. So maybe its something else. Not sure yet. Will keep reading.Thanks for resending the links!June Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 20, 2014 Author Report Share Posted February 20, 2014 Honestly, its strange, the symptoms of CFS seem to be mostly the same as the symptoms for POTS. Maybe a couple added things…Maybe they just don't understand POTS and CFS. Maybe an infection causes POTS with varying severity. This would produce patients who appeared to have both or one but it's really all the same. I will definitely ask Dr Stewart about the connection when I see him. I was diagnosed with CFS years ago. I never received any effective treatment for it and am still extremely affected today. (tons of illnesses, extreme fatigue). But there isn't really a good treatment that I am aware of. They wanted me to take all these expensive vitamins…Kinda didn't ring true for me. Oh well.June Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 20, 2014 Report Share Posted February 20, 2014 Hi June,Sorry I didn't catch this post earlier. My son symptoms kept getting worse after infections and virus. This is the reason why the cardiologist was so desperate to get our son seen by a pedatric immunologist. My son's recent testing indicates problems in his immune system. So if you can find a true immunologist that will dig, this should be very helpful also.Rachel Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 20, 2014 Report Share Posted February 20, 2014 There is a push to get away from the CFS name as my doctor says "it doesn't describe the devastating effects this illness has on the immune, neurological , endocrine and GI systems". ME was the name applied to the disease that was recognized for decades before the CDC decided to rename it CFS in the 80's.Anyway, that said, sleep disturbances are a hallmark figure of ME. Post-exertional malaise or exhaustion is another one. The other symptoms very much mimic POTS. The statistics vary but from the studies I've read, depending on how the participants were identified (which criteria were used), anywhere from 30-90% of the patients who had POTS also had ME/CFS. Personally I think it's a spectrum of disease and I wish the researchers would get on the same page and use their limited resources together to speed up the research. The docs I've talked to, both POTS and ME/CFS specialists, suspect a genetic connection. My daughter has also been diagnosed with POTS and we've done the blood work to check her immune function but haven't gotten results yet. There is a lot of exciting research going on now in the ME/CFS arena. There is a lot of focus on the autonomic nervous system in some of that research which will likely benefit us all. There is unfortunately very very little funding for that research....about $3 million per year in the US compared to $16 million per year spent on male pattern baldness. ( Given the relative amount of disability caused by the two conditions that seems backwards somehow.)One of the areas of research is that people with ME/CFS are unable to fight off viruses and carry a high viral load. The thought is that the viruses hang out in the nerves, ganglia, brain etc and reactivate at times. These patients have a low Natural Killer cell FUNCTION (not necessarily a low NK cell count). Many of the ME/CFS specialists are using antivirals and immune modulators to help with this now. With the right docs, there can be improvement (still no cure) but some people are getting back to work and school full time etc.Here is a link to Stanford University's ME/CFS website.chronicfatigue.stanford.edIf you click on the tab under infections, there is a box on the left with a bunch of the suspected pathogens they are studying that may be involved. It's a good place to start looking and has a lot of links from there. Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 20, 2014 Report Share Posted February 20, 2014 (edited) Not having luck with links these days. Trying again.chronicfatigue.stanford.edGuess it doesn't want to set up a link for some reason so you may need to copy and paste it in your browser. Sorry. Edited February 20, 2014 by Chaos Quote Link to comment Share on other sites More sharing options...
Chaos Posted February 20, 2014 Report Share Posted February 20, 2014 Just saw this article on another site that further explores the connection between POTS/OI and ME/CFS. It also has links to recent studies connectingthe two subjects if you are interested.http://phoenixrising.me/archives/23374?preview_id=23374 Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted February 20, 2014 Author Report Share Posted February 20, 2014 Thanks Chaos & Loonymom!I will definitely research all of this great info. I appreciate you taking the time to share it with me. I am so desperate for my daughter to just feel better & go to school like a normal kid. I know exactly when all her problems started and that really points to an infectious cause.June Quote Link to comment Share on other sites More sharing options...
jesse1919 Posted February 23, 2014 Report Share Posted February 23, 2014 I certainly have had more frequent infections since I got POTS: colds and throat infections. My hypothesis is that POTS is related to a constantly heightened flight or flight response (hyperadrenergic state). Increased sympathetic/ reduced parasympathetic nervous system activation reduces immune system performance. Quote Link to comment Share on other sites More sharing options...
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