Feeling Awful!!

[lynnie22]

I haven't been on this site for a long time. I'm sorry to return now when I feel in desperate need!

I was going on, marginally functioning but functioning. Suddenly, about a month ago I got hit

with this super exhaustion and feeling of being sick that I have never experienced before.

I have been diagnosed with POTS and years ago, with CFS. I went to the CFS doctor that I

haven't seen in a long time and it turned out my herpes 6 active titre ( IGM) was borderline high.

My internist retook it three weeks later and the numbers did not change. He said it meant my

virus wasn't active, or else it would be going up. Anyway, I have sunk and can barely move.

I honestly don't know where the CFS begins, or the virus begins and the POTS ends. When I

went to Mayo clinic four years ago where I was first diagnosed with pots, I was also exhausted,

although not like this. I can't even move, my throat is sore (I'm on antibiotics because I tested

somewhat positive for strep) but I think it's the CFS/pots -- I know there is an intimate

connection between the two, and then there's the reactivation of herpes 6.

Anyway, I'm jumping out of my skin and was wondering if anyone has had this experience, and

has any suggestions.

Thanks for whatever you can offer!!

[Katybug]

Lynnie! I'm sorry to hear you've taken a backslide! I have had strep infections that have made me feel about an inch away from death. They can become systemic and cause severe symptoms. The fatigue I had with a couple of strep infections in my 20's was like nothing I had ever experienced....I was totally useless for about 2 weeks each time and it took 2 courses of antibiotics to get rid of each infection. I hope that it's the strep that's got you down...at least that's treatable. Will be thinking of you.

[SarahA33]

Oh Lynnie, I'm terribly sorry for what you are going through right now. I wish I had something useful to offer, but have you thought of calling Mayo and seeing if you can get back in there? Not sure if that's a possibility for you at the moment.

Thinking of you and wishing you much much better days!

[lynnie22]

Thanks for your support! I don't think it's the strep, Katie, cause the antibiotics aren't working really. An inch from death describes it well though. I guess no one here has had a CFS active and POTS combo? But who knows really what it is. Haven't been able to work in about three weeks consistently, that's for sure.

Thanks everyone for listening.

[ramakentesh]

Things will turn around

[Chaos]

Sorry Lynnie to hear that you are struggling so.

Not sure if you are in the states or not but you might want to look into seeing some of the ME/CFS specialist docs here if you are. I've been seeing one and he has been prescribing antivirals for me which have helped tremendously with my symptoms....both POTS and ME/CFS. Most of those docs seem to get the connection between POTS and ME/CFS. Depending on which study you read, anywhere from 30-70% of POTS pts have ME/CFS and likewise, ME/CFS patients have POTS.

Have you looked at Dr Montoya's studies out of Stanford regarding HHV6 and ME/CFS? He's having some success with a subset of patients doing well with antiviral treatments, specifically Valcyte. He's not sure if it's actually the antiviral aspect of it or the immune-modulating aspect of the med that is helping people, but he's having some dramatic results with at least some of the patients.

Hang in there. Hard when you're feeling so miserable but hopefully things will be better in the near-ish future.

[DizzyGirls]

My 19-year-old daughter has not been officially diagnosed with anything yet, but we are in the process of genetic testing....so maybe they'll come up with something. Her biggest symptom for most of her life is debilitating fatigue and since she entered teenage years, migraines and vertigo. A couple of years ago she started showing signs of POTS too. She has this unusual personality in that she is always smiling, and even though she will be in the ER, she's smiling. An ER doc commented on that when she was there this past fall. So, therefore (with the exception of that ER doc) nobody takes her really seriously. She REALLY is that ill! She would understand how you feel. She has been on the couch with barely enough energy to brush her teeth since January. Can't find a doctor well versed in POTS and CFS. You have our sympathies and hope you get some much needed energy!

[lynnie22]

Thanks for reaching out! You know, Chaos, I HAVE been on a search, I am in NYC, went to my old CFS doctor who does know the connection between the two, but she has a pretty it seems laissez faire attitude about the whole thing. I did make an appt with an infectious disease doctor, new I think, who does specialize in CFS among other things. Hopefully she can offer some help. The antibiotic for the strep helped, oddly enough, but not with the fatigue, and it caused terrible bowel problems which I hope do not become another issue (just somehow resolved that one after several months, hate antibiotics). I will check into Dr. Montoya's study, thanks, and I will really try to find someone.

So sorry about your daughter, Dizzygirls. I do hope you find a doctor for her. There is a list on this site I know, and I imagine a lot of them are good. I went to Mayo out in Minnesota at first when I couldn't get an answer in NYC. At least I got diagnosed, although not really helped. I think it's hard to find a good doctor. Period. Good luck--there are definitely doctors who work with CFS or POTS.

Me, I'm sitting here tonight with terrible chills and exhausted, long weekend ahead.

[statesof]

Hey Lynnie22 I don't really have much to add to help with your current symptoms, but wanted to share this article I read a while back about this author Laura Hillenbrand (Unbroken, Seabiscuit) struggling through CFS and it mentions different ups and downs where she basically could barely even get out of bed during her relapses of CFS symptoms: http://www.kenwilber.com/Writings/PDF/A_Sudden_Illness.pdf