erik

It's an interesting topic! I don't have any especially clear info on it, but I've developed some tenative opinions/observations from other people's experiences! It seems like having two or three of those is quite possible depending on the variety of docs you see over the years and each of their biases & experiences & knowledge. It seems that docs also tend to reach a "judgement call" diagnosis more often when they expect to be able to treat at least a few symptoms. Those that don't expect to be able to help you seem more reluctant to make the diagnosis/finding of these syndromes... since it's like diving in to murky water for them... or they even kind of drive you away (perhaps in rude manner). I understand the blurry nature of "syndromes" but I try to see it as a blessing. It allows medicine to make preliminary attempts at contexualizing, theorizing, communicating about, researching, and even treating these things well before they are fully understood. Even though it's problematic, if this weren't attempted we would just be medically out in the cold. There aren't really too many "paramount advances" to refer to, but stuff that helps symptomatically in one area tends to get tested out quickly, and sometimes helps in another. CFS is perhaps the most squishy of the 3, but does demand pretty significant persistent fatigue (or distinct unusual "delayed fatigue not aided by rest" pattern). ME (Myalgic Encephalomylitis), it's successor or cousin or whatever, has some more distinct definitions but is still incredibly complex so as to be blurry like CFS. The other two may or may not include that degree of fatigue. POTS has a trademark medical sign (an objectively measureable trait) in addition to the symptom cluster (though on rare occasion I guess docs will stretch across that). Fibro has semi distinct pain and "tender point" trait that sort of gives it a clear cutoff point... separate from a "sore fatigued muscle" feeling there should be more of a distinct pain and/or tender point element I guess (I'm not an expert in it). The hugest overlap I seem to recall is of those with CFS also qualifying for POTS or Orothatstic Intolerance. I think that percentage is huge. I've read some reports that have CFS subcategory called "CFS-P", the P for POTS.

Yes on family migraine (though I lack). 1 parental cardiomyopathy... unsure if it is hereditary form or secondary to other condition.

I've read a tad about exogenous neurprotective stuff but it's for dire situations and I don't remember the substances either other than BNDF which has catchy acronym! I do have this bookmark here which is more than I ever wanted to try to digest about all the little things that can go wrong in various circumstances! This is mostly for significant hypoperfusion cases, but gives great detail (elsewhere on the site is interesting too): http://www.neuropathologyweb.org/chapter2/chapter2aHIE.html

Will be praying that she keeps going well despite the challenges... I wish you both the best.

I'm sorry to hear that. Is this the pleurisy lingering/returning? Do they do a steroid for inflammation or something like that? or just supportive care? Oh boy. Coughing blood is not fun... I guess that goes without saying but I can relate... one feels very vulnerable. I am sure the ICU can nurse her through it... she is in good hands. It sounds like you are doing very well managing all this... I'm sure it feels terrible, and helpless, but you are doing so much to help and care for everyone. I hope you manage to get some rest in as well. Probably feels impossible to do, but give yourself some rest and support time as best you can, too.

Yeah. I'd take a standard anti-viral (again) without much worry or hesitancy (though one should always worry a little no matter what you're taking). I'd be hesitant to take a more "serious" anti-viral like I presume some of the HIV ones are. Then again, I don't know much about HIV/AIDS so I'm admittedly roaming the land of assumption here! Anybody know of solid animal models for POTS and other dysautonomias. I bumped in to one study that listed some bad things used to induce O.I. or O.H. or something. Sorry to allude to the crueler side of medical research, but does XMRV itself (or a similar analog) infect animals that can be used to this effect?

I had a super mild cold for couple days, then it escalated and gave me a full head cold experience. Nothing too extreme, just a solid cold... also nothing to indicate flu, no chills, fever, digestive troubs, etc., just sinus & mild lung congestion, etc. I've been on fludrocortisone again for a bit now so my BP has been in the 130's (supine) which is a good stable target for me and where I ended up last time on this dose of fludro/salt. While this cold was going strong, my BP shot up consistently to 160 (or a few higher) supine & sitting, falling only to high 130's upon standing. I had the nasty cold stuff and felt bad from that, but under it I felt strong & healthy like I usually do not! I guess I felt like a regular person with a cold... rather than my personal half-ill baseline feeling underneath. I did take cold meds on a couple days, but not consistently. I stopped them to make sure they weren't giving the super high BP. They weren't. Also, when not having a cold, I sometimes take Claritin-D or straight Pseudoeffedrine and even combined with fludro I end up healthy 130/140's systolic, which keeps me less O.H. prone. It is like my body & mind are incredibly better at 160+ systolic! Have any of your doctors given you the ok to target BP's that high? For me, I felt significantly better such that I'd be willing to weigh that against potential cardiovascular risks. Is there an alternative approach that simulates this high BP & high perfusion state without adding much risk? Is high BP only risky when it's from bad stuff like clogged arteries, and so long as I don't have that am I actually OK? I'll be asking my doc, but do you all have some insight or experience with allowing high BP's?

I've had things that felt like surges in the night (these sometimes get likely during rare "phases", my symptoms kind of change up)... and have not had them in the morning. In my case, it is hard to figure out specifically what they were. It wasn't a simple nightmare or anything, usually had no notion of having been dreaming (or sometimes not really even asleep... just trying to sleep). I tend to be bradycardic so my HR might have gone low enough to set of "alarms" to counteract that in a brutal way. I also sensed that these could have been seizures of a sort, because of their nature and the fact that this "phase" of my symptoms also tends to include increase myoclonus (a generally benign brief seizure thing). They could well have been adrenal surges happening for some other reason too (though I do not fit the Pheochromocytoma mold that is a remote possibility). I'm afraid I don't have anything definitive to offer, but I can say 'Yes, I've had night surges' of some sort They are not a regular thing in my case, just during certain phases. I endured rather than treated them since they aren't frequent for me. For me they had either a panic or a terror aspect to them as well... the ones that hit hard and are over in seconds make me think of seizure... the ones that build kind of slow and taper off make me think of catecholamine surge. I have no diagnosis or measure to indicate or eliminate a likelihood of either as of yet.

Maybe BDNF?

I did not even know those options were there! Something new to play with. Thank you for the tip.

I see. I guess anti-viral hinders the virus but the body must then take it out completely if possible via immune response. Or it can tamp it down enough to suppress symptoms... I know a doctor here that takes powerful antibiotic for that purpose, for whatever reason it can't clear the infection but keeps it at bay, preventing him from going septic (again), yet never cures him, just keeps him alive! I suppose if the virus were precipitating neural damage it could involve the long process of nerve regeneration after eliminating the threat. I've heard things can sometimes regenerate with time. Also, there are some "odd" drugs claimed to have neurprotective or neurogenerative effect... I think one of the anti-depressants is credited with this. Or there is that BDNF (brain derived neuroprotective factor) stuff, or whatever it's called. Hope some advances are made in those fields too. If it's just changing some standard body process, then it's elimination could be a full cure perhaps. One can hope! Might work for Halloween... for a trick-or-treat thing??? What would a "retrovirus costume" look like? Vira are mysterious little beasties! Hmm, maybe a cross between this cyber-squid lookin' thing (PICTURE) and an 80's rubik's cube (PICTURE)??? "Retro"... get it? Viva las 80's

Considering estrogen pills... wearing pantyhose for compression... being eligible for morning-sickness meds... hanging out all day "with the other gals" in the support group here... I was even a Kelly Girl for temp work !!! I can relate to Mack's potential for a little ego bruising! I think I'm proof that some manhood can persist, would like to think so... a little bruising here and there might even make him stronger. Also, if I were his age again I would not be entirely disappointed joining an "It's all GIRLS" mostly supine support group... I think I had some recurring adolescent daydreams roughly along those lines back when my male hormones were particularly influential Like yesterday... we men really are cursed in these regards! I'm sure he'll do fine in that regard... maybe end up with a king-cab truck and some motorcycles or something... but otherwise ok It's interesting... I had "growing pains" and even saw a doc for them. Of course they just say "that's nothing... just growing pains" and a kid learns not to bring such things up. Also had at least 1 really bad infection/fever as a kid, basically to the point of mild delirium. But then also had head injury not long after that (which preceded fainting spells by 6 months)... so that's kind of my lead suspect unless this was compounding/cumulative damage. A definitive cause sure would be a blessing... even if the prognosis isn't much different for me, I'd love for this retrovirus thing to pan out.

I can completely relate to the desire to know if XMRV is present or not. After that, and I am not diminishing the value in that... what would be a treatment? Is there something borrowed from AIDS management that would apply? Or just a simple anti-viral? I don't know anything about "retro virus" stuff. I took an anti-viral for a shingles thing years ago and had no bad reaction... I'd be willing to try it experimentally regardless of XMRV status (I also seemed to get better from doxycycline a while back, even without actual evidence of bacterial infection... and plan on trying that again). Would there be a logical treatment awaiting us for XMRV or would that be another huge step for researchers... like curing AIDS (which they'll likely focus on first)?

I will be patenting C.C.T.T.C. soon... my "Customized Crap Tunnel Therapy & Counseling" that is. Don't be surprised to see me on Oprah peddling my top-selling book on Amazon or my "Sedona Crap Tunnel Retreat & Spa" for $10,000... (it will be located above slide rock for easy washing off afterward). Gotta fund my POTS meds somehow Seriously though. I did cry while making that post... not being sarcastic here... actual tears... but I also laughed. Seems to work best for me and I share it in that spirit. I am glad to be helpful in any way, even just for a chuckle amid tough circumstance.

I've had phases when I'm unable to sleep during day. The phrase "Tired but Wired" comes up with some conditions and seemed to fit rather well. One can be really tired and getting disfunctional as a result, yet unable to get the rest they need. I've also had extended phases where I'll fall asleep suddenly during the day. So I don't fit a consistent mold very well. I have never had effect from codeine or vicodin (except a little constipation), perhaps due to a metabolism issue??? However, SOMA has a really mild anxiolytic and mild pain relief effect for me. It helps my chronic lower back troubles... but it is almost more beneficial in these other ways. Thankfully I didn't get sleepy from it, so it helped me stay functional for long upright night shifts (along with ample fidgeting and stretching)... but for some it could help with napping and count as a "lesser opioid" if worried 'bout the others.

I just watched Houseboat on TCM and I am most definitely interested in hiring a maid... not sure if Sofia Loren is still available or not I'm not a lawyer widower, more of an unemployed loser... so that will complicate things though! But seriously, I get spurts of being able to do cleaning well and get by ok that way for my circumstance. I'd say if you're in a position of needing to maintain things reliably and steadily it is very understandable that you hire someone. These "little things" are not so little for many of us, and you deserve anything that will maximize your health and ability to enjoy what you can when you can. I can understand the guilt and other complications. It's like a thing that eats on your self sufficiency and pride. This is understandable but also worth trying to minimize. I don't know how... but try not to let that get you down. Maybe a trial run of a month or two with the maid... or a maid that will let you kind of work along side them???

Perhaps I should give the birth control pill a try myself It would be a quandary if a doctor told me that they could cure my POTS but that they'd have to turn me into a woman then put me on birth control... at this point I'd say no, but if things got even worse maybe they could zap my memory or something so I didn't remember the prior??? Perhaps I should volunteer as an early "Male Birth Control Pill" fellow I think it's sort of out there, though not very popular, right? Thought I heard something about it. I'm mostly kidding, since I assume it wouldn't work in same fashion as female BCP. I came up normal for "Low-T" (testosterone) but maybe I've got fluctuating estrogen that doesn't belong (like a little hormone secreting tumor or a prolactinoma or whatever)... or perhaps a tiny steady dose of androgens would be worth experimenting with... my testosterone might be normal but in flux, and helped by supplementation. I think "hypothalmic" damage is a decent hypothesis for me, and that does happen to tie in to regulating almost everything in the body hormonally. I have to admit that some of my "concern" over the sex ratio dilemma stems from the implicit insult to my manhood Mostly it's a "scientific" curiosity... but there's always a potential Freudian underlay! On the other hand, it's a good excuse to hang out with all you ladies here!

I wish I knew of a trick to dealing with it, but I can sympathize for what that is worth. I'm sure many others here can as well. I classify myself as moderate & intermittent with most of my symptoms... so I deal with that style of disability... like an overall disability more than a specific persistent one. It places limits and dampens spirit in it's own "special" way... but does so nonetheless. I like the scene from Shawshank Redemption where Andy talks about a place inside that can't be touched... where they can't get to you. The other guys looked at him like he was crazy... and he probably was. But he did keep his hope, crawled through his personal (literal) crap tunnel, and made it to sunny Mexico! We can crawl through our proverbial crap tunnels too... with some help and a strong spirit and a persistent goal.

That is great! Very good to hear of success and recovery. It does happen for a decent number of folks and it is very helpful to know about the things you have done to help yourself. Congrats and keep it up. It sounds like you're referring to the "sleeping with head slightly elevated" trick? And extending it to most hours of the day. I have also found this to alleviate some things personally in the past. I mysteriously insisted on doing it even before I knew POTS existed, just cause it felt better overall! Do you know what may have brought on your O.H.? Was it a sudden thing from an infection or just a mysterious condition? Did any docs happen to give speculation about an underlying cause?

Yeah. There are a few meanings & connotations to "pandemic". The technical meaning which is arguably of minimal use, the political meaning (how agencies define & respond, etc.), and the "OK, we're all going to die so everybody run around like a Chicken Sans Cranium" meaning. There are few if any promoters of the latter... though perhaps it could come in handy as a pick-up line in a bar... as in convincing someone to make a decision they might not make otherwise! Sadly, it seems that these things operate on a "cusp" or "critical mass" basis. They hum along looking like a total dud, making fools of anyone who advocated caution... right up until the moment they explode into true catastrophe. That is the nature. It is a scary nature. It does not mean that scary things will happen, just that they can happen. Acknowledging this observation is not over-hyping... it is establishing a context, a full context. To do less is a luxury not available for anyone in a decision making role. As new info comes in, we all hope that alarm can be lowered. For some this makes prior alarm look foolish, but it's best to remember risk is/was there, despite how things happen to play out. But any way, accusation of mass murder for simple profit is a lofty charge, and one which should be made only with strong specific evidence and reason... which I find suspiciously lacking. I assert that there is more evidence of underlying paranoia and active fueling of such on the side of conspiracy accusers than on the side of those warning of potential escalation of the virus' impact. But that is just my observation and interpretation of what I see on news and whatnot. Things could be different elsewhere or for others. As many others have said, a critical piece of information is being an "at risk" individual. This changes the equation drastically for some. As with most all things, one rule cannot be applied identically to all or applied universally to explain a large complicated circumstance. The definition of "at risk" is evolving as we speak, based on hospital admissions, observations and outcomes. Last I heard, 80% of those having poor outcome had one of the "at risk" conditions... so it does seem logical to let that influence decisions... even if this were a man made conspiracy of some sort.

I have no idea... but for very loose comparison it is interesting that there is a distinction between HIV infected status vs. having AIDS.Another thing... I am unclear if the female:male ratio exists within the POTS population suspected of being post-viral in nature... or is it balanced in that population but incredibly skewed to female in other potential causes... such that the net ratio is 5:1, 6:1 or whatever the ratio is said to be? If this ratio is sustained within a post-viral or a retro-viral population... what is the explanation??? A susceptibility in women? An incidental protective factor in men? Are there men that are just as "sick" but it doesn't emerge symptomatically... like clamidia where men are often asymptomatic even though they're infected just the same. Or perhaps some similar but different diagnosis that pulls people to a different category/population statistically? I think the whole CFS/Fibro/POTS population is drastically female (same with lupus, Sjogren's, and others)... is this a clue to underlying suspected causes or pathologies? I've not heard any specific theories that tie that basic observation in to causes, have you all? I have read that mitochondrial traits are passed from mother to offspring. This means mother to son, as much as mother to daughter... but the son would then not pass it on further. That does not explain a sex ratio, though, despite being sex related. But can give hints if familial patterns emerge that match this. I think that things can come along and alter our DNA or trait "expression". So some might have genes sitting there, either dormant or working properly but still different than others. Then a certain retro-virus or whatever happens to come along and mute or activate these. Alternately, there are sometimes "protective" factors that could be involved... the lack of which would never be an issue until some thing or circumstance comes along and makes them necessary. Things such as this can potentially explain both "predisposition" and "viral/provocative agent/toxin" patterns. Sorry for rambling without much insight... but these things always bring up more questions than answers until someone is able to piece the mystery together AND explain it coherently... and that is NOT me

I have read just the opposite... that they do mix this way specifically... though it obviously isn't "sexual reproduction" in the biological sense. They do so in our bodies while we host them... meaning the more people that are infected (even if not deadly so), the greater probability of cross-mutation that could end up with catastrophic effect on others.

True. It could also hold an at-risk person at bay or avoid unnecessary exposure until vaccine was available, however. It is a judgment call. The CDC guideline is simply that it "may be considered" for certain individuals & circumstances (people with certain conditions or in certain public health positions). May or may not be "right" or end up being "better"... one never actually knows, just makes informed guesses.

Certainly hang in there. We're here for you on the forum, always. Also be sure to do your best to seek support from family, religious and/or professional sources as dealing with any chronic illness is inherently challenging... especially the sort that seems to tease and torture us with variability like this. Losing a good spell is so frustrating, feels worse than not having had it to begin with, but one thing that it reminds me of is that my body still has the underlying capability of running reasonably well. This is a "mixed blessing" since it's so emotionally tough, but in the big picture it is still a good sign that you had a good streak. There is literally nothing in the body that stays the same over time. Homeostasis even in the healthiest person just means things are varying within decent margins of functionality. The body adapts to things, especially meds. I think you should still pursue things such as MCAD diagnostically if you can if it matches symptoms pretty well. A specialist might have some tricks beyond basic anti-histamines... for example, certain tricyclics will hit stuff like seratonin and sometimes balance autonomic response while also being H1 and/or H2 blockers... or various other things. There might be other possibilities out there, or perhaps things similar to MCAD. Or the anti-histamines could have been having a regulatory side effect that provides a hint to another underlying problem... pushing on one spot always induces counteracting responses or side impacts... I'm sure there are still other things to try.

Very frustrating. I suppose one could maintain the paxil and try to add something to address side effects. One might up the dose, or since so much of this disorder is paradoxical... perhaps lower the dose. There are a great many other similar drugs, or sometimes things to add on top if there is something magical about paxil for you. Sometimes they have pretty solid scientific measure of a drug's affinity for each known receptor... if there's something magical about paxil for you that could help someone choose a replacement or set of replacements. Or sometimes those pesky CYP450 liver enzymes get played with and change drug metabolism on you... who knows! Or maybe this will be a temporary phase where the autonomic probs are just shifted or extra severe and might return to a level where the paxil will again work great??? Fingers crossed. Good luck to you withstanding the bad bout and perhaps transitioning or whatever ends up looking like the best option. Lousy to have a good thing peter out like that.