Don't know what to think... SSA CFR RE: Viral Infections

I decided to do my video today, and to do a little research before I started.

I found some links to some info that makes me want to scream and pull my hair out.
Seriously. Scream. Preferably at my old attorneys, while asking them what the hell they were thinking when they prepared my case, did they not realize they were playing with my life? Years and years of my life? (Going on 6 now...)

Well, I guess I'd better explain a bit before I go on with my rant.

Here is the content of one of the pages of the SSA's Federal Regulations describing Immune System Disorders that meet the criteria for their definition of Disability.

http://www.socialsecurity.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm#14_08

I'm specifically referring to this section:

D. Viral infections:

1. Cytomegalovirus disease (documented as described in 14.00F3b(ii)) at a site other than the liver, spleen, or lymph nodes;

Umm, I think with all the viral infections I have, an equivalency can be made for that. Or the CFS definition. But they haven't taken that into account either, it seems... (http://www.ssa.gov/OP_Home/rulings/di/01/SSR99-02-di-01.html)

I'm also wondering if an argument could be made for an equivalency to HIV/AIDS. (Thinking of an article I've read somewhere where it indicated that Dr. Nancy Klimas, an Infectious Disease specialist in FL who treats AIDS & CFS says she'd rather have AIDS than CFS if she had to choose. (I know she was talking in general, not about legal equivalents of impairments, but...)


Pretty sure I meet this one, with my two bulged discs and pinched nerves:

1.04 Disorders of the spine (e.g., herniated nucleus pulposus, spinal arachnoiditis, spinal stenosis, osteoarthritis, degenerative disc disease, facet arthritis, vertebral fracture), resulting in compromise of a nerve root (including the cauda equina) or the spinal cord. With:

A. Evidence of nerve root compression characterized by neuro-anatomic distribution of pain, limitation of motion of the spine, motor loss (atrophy with associated muscle weakness or muscle weakness) accompanied by sensory or reflex loss and, if there is involvement of the lower back, positive straight-leg raising test (sitting and supine)

Then there's also a section on Interstitial Cystitis:
http://www.ssa.gov/OP_Home/rulings/di/01/SSR2002-02-di-01.html

And then here's an actual case, I don't understand how it could have been won and mine not, I have all the same symptoms (if you replace HIV w/Enteroviruses) and more...

http://www.disabilitylawclaims.com/case_results/claimant-suffers-from-hiv-major-depression-neuropathy-gastroesophageal-reflux-disease-chest-pain.cfm

It just makes me so angry, re-reading the decision, what a shoddy job was done, most of the information was untrue (like how they said my POTS was mild and not a big deal at all and controlled by medication! NOT! I just couldn't find a specialist who would treat it!)misinterpreted, or based on incomplete information. (Like them failing to note the doctor at my Physical Therapy clinic was an Orthopedic Surgeon, so my pain must not be so bad, they said my Degenerative disc disease must not be that bad if I hadn't seen a Neurologist, which I had, and even had tests proving that I had nerve problems related to my bulged discs, as indicated under the criteria here:
http://www.socialsecurity.gov/disability/professionals/bluebook/1.00-Musculoskeletal-Adult.htm#1_01

1.04 Disorders of the spine (e.g., herniated nucleus pulposus, spinal arachnoiditis, spinal stenosis, osteoarthritis, degenerative disc disease, facet arthritis, vertebral fracture), resulting in compromise of a nerve root (including the cauda equina) or the spinal cord. With:
A. Evidence of nerve root compression characterized by neuro-anatomic distribution of pain, limitation of motion of the spine, motor loss (atrophy with associated muscle weakness or muscle weakness) accompanied by sensory or reflex loss and, if there is involvement of the lower back, positive straight-leg raising test (sitting and supine);

OR

A. Evidence of nerve root compression characterized by neuro-anatomic distribution of pain, limitation of motion of the spine, motor loss (atrophy with associated muscle weakness or muscle weakness) accompanied by sensory or reflex loss and, if there is involvement of the lower back, positive straight-leg raising test (sitting and supine);

And here's the last one, for POTS:

4.05 Recurrent arrhythmias, not related to reversible causes, such as electrolyte abnormalities or digitalis glycoside or antiarrhythmic drug toxicity, resulting in uncontrolled (see 4.00A3f), recurrent (see 4.00A3c) episodes of cardiac syncope or near syncope (see 4.00F3b), despite prescribed treatment (see 4.00B3 if there is no prescribed treatment), and documented by resting or ambulatory (Holter) electrocardiography, or by other appropriate medically acceptable testing, coincident with the occurrence of syncope or near syncope (see 4.00F3c).

Agh. I'm sorry for the rant, this just makes me so angry...makes me wonder why my old attorneys didn't do a better job, why the Judges are being so unfair, why they don't care that they're messing with my life, which keeps getting tougher & tougher... I was having some major anxiety earlier, and it got better, after venting to my brother a bit, then got worse when I came back to finish this, so I think this is why. I just feel so completely helpless...wondering if my new lawyers will do their job, and if the judge is going to be a fair one for once. It just blows my mind...And I have to admit, I'm really scared this time. Just going to the hearing, I almost fell apart last time, and after the year I've had...Living with so much uncertainty... It's almost too much to bear.
I just want to get well! I'd even settle for not getting much better but not having the stress I have right now, having someone to help me clean when I'm too weak (all the time these days, I got worse just tidying up a bit, nevermind actual cleaning!)health insurance so I can get my medications and try to keep my symptoms at bay...Just a better quality of life...
Well, my upper back is burning & going numb, so I guess I'd better lay off the typing and lie down. Always with the lying down, grr. I so want to eat something disgustingly sweet and fattening right now...lol.

My Virtual Ramblings - CoQ10, More Viruses, Supplements & Medical Records

Listening to some nice, calm, Tibetean flutes, cuz I really need to relax. I feel so frazzled at nights lately, and my shoulders are killing me. (Not sure which came first but they definitely go together.) Last night was a tough one. Partly I think, because I kinda decided to wean myself off Elavil, which helps me with sleep. I don't know, maybe I'm stupid, because I've tried it before, and it's always interfered with sleep, causing worsening of stuff. But I've been reading for a couple of years now that it inhibits CoQ10 absorption, as does my beta blocker. I'd love to be able to supplement it, have tried in the past, and even though the price has gone down, I'm just kind of going crazy trying to keep up with all the supplements I need. (I'm low in Vitamin D, Iron, B-12...possibly other B's, and bought a B Complex, which was once always my must-have, but it irritates the heck out of my IC (too acidic for my poor bladder lining). Plus there's the ones I take for allergies, to boost my immune system, to help regulate my hormones and smack my Endometriosis back into remission...Whey Protein for my immune system & to make sure I'm getting all the protein I need as a vegetarian... With the vitamin deficiencies, I have been trying to talk myself back into eating meat after 11 years, and it was going well...until I unsuspectingly caught Chef Ramsey on TV at some horrendous butchering warehouse where they specialized in blood, watching a live pig having the blood drained out of it for Blood Sausage, ahhhhhhhh! Back to square one. I'm an ethical vegetarian, I believe we're beyond needing meat to survive, but if my anemia contributes to my getting worse, maybe I personally do need to eat it...Will have tests next week to find out just what kind of anemia it is, because my red blood cells seem to be enlarged, so they're testing for B-12 and folate deficiences, and then, I believe there is a chance it could be caused by the anti-viral I take, which would suck, because it helps. Dammit. I hate being broke. I know I should have had my Infectious Disease specialist monitoring that, but w/o insurance I can't have blood tests done outside of my county, so he can't order me any, and for some reason all the ones I send send him from other docs never seem to make it. I guess I should've tried harder, but I always seem to run out of stamina and just end up so overwhelmed I shut down, have to not think about it for awhile...It always comes back to money. The lack of it causes all kinds of stress and inconvenience and it seems nothing can be done properly. Who knows, if I had some, maybe he'd have been able to see what worked and didn't more easily, I would have been able to follow his recommendations more thoroughly...
Oh well, no point in iffing my life away, it is what it is for now.

But as I was saying, CoQ10 is depleted by this med, so I'm trying once again to cut it out. Besides, I ran out and I'm broke!
Googled & randomly found this aptly named article:Drugs that Steal

It might not all be the drug (I am replacing it with melatonin, and still taking my Soma) but also partly because I was suffering from some of the worst shoulder/neck pain I've had in awhile. (Which reminds me, I'm going to go put my buckwheat neck thingy in the freezer. I don't think it's meant for that, but heat won't do for this.) Absolutely killing me. I guess because I've been spending more time in bed/lying down, and on the laptop. I have to remember to keep my elbows propped on something, which should help my shoulders, but my neck and TMJ are also an issue...my jaw and base of my skull & neck are constantly popping and clicking, it's starting to really bug...I called about the Chiropractor today, but now they're saying I need a referral! When I talked to the PA about it she said to just go next door and make ask for an appointment, so they said they'd check with her and call back. Possibly she just had her fill of all my requests? I don't know, she seemed very genuine and professional...Oy. Well I faxed her a bunch of my medical records, and put a note about the Chiro on there, hopefully she'll okay it. I can't even use the shiatsu massager anymore because the muscles were so knotted up I stayed on it too long the other night trying to get them loosened and made my whole back sore to touch. I need a human touch, lol.

Well, what else? I opened up the dreaded files, I wasn't kidding, there were about 4 reams of paper's worth. I was really surprised to find everything I thought would be in there was NOT. Like ANY records from the Neurologist who evaluated my degenerative disc disease issues, pinched nerve, did the nerve conduction test that objectively proves I have one, and all that MINOR stuff. Worse yet, a friend who works at the clinic that was supposed to send them, who assured me it was taken care of (I even drove 20 minutes when I was feeling like utter crap to pick them up in person, spent an hour chit-chatting with him, and then he tells me he doesn't have them, their in the office, but they were faxed to my attorney the day before, and asks me to come over for dinner later. I went home and didn't make it, was too tired, so now I'm thinking maybe he was just trying to sweet-talk me to get some dessert...people can be so immature!) in the end didn't, or at least that's the conclusion I have to come to, which really, really ticks me off, because I would have found a way to get them over there myself, and it was kind of an important piece of my case, aside from not realizing my Orthopedic Surgeon was not one (which on examining the files, I guess is understandable because it doesn't specify that, just says MD, they didn't have the other records, so why would they think I had real issues with my spine? Ugggghh! Aside from that, there were no records of the second round of PT I had last year from another clinic...Well, at least now I know what I can work on for my appeal.

I also found out that interestingly, I apparently have some other viruses I didn't know about, CMV and HHV6! (To go along with the Echovirus & Coxsackie.) And I've had a low thyroid on more than a couple tests, to go along with the low cortisol, as well as high (at times SUPER high) cholesterol for quite awhile longer than I'd though. (Which I'm wondering if that ties into the CoQ10 issue at all?) I thought I knew what to expect as far as labs, but looking at them all I was actually surprised to find that the picture is of someone who is definitely NOT healthy. I guess it's that whole guilt thing, oh you look fine, you must be fine...

Anyhow, I tired myself out doing all that. My feet & hands are cold, neck hurts, frazzled-tired. I know my Mom would probably get on me for not doing the dishes if I had the energy to do that, but honestly, I didn't think I did have it. I think maybe I just draw on reserves I probably shouldn't because, well, it makes me feel like I am doing something to help myself, to win that damned case so I can get well...It's weird, I don't feel as desperate as I did last week, but I still do feel like there's no other choice. Especially looking at the labs & records from when I was working and I started crashing...wow. I can't have a life like this. With all the time I spent at my Mom's this year, I still didn't see my friends more than a couple of times...it just takes such extraordinary effort. I'm constantly pushing, just to do day-to-day things, even when I was better and I didn't notice as much, it all requires pushing, and will power only goes so far. So it is, tomorrow, I actually have a birthday someone wanted me to spend with them, someone who "likes me a whole lot" but I'll probably stay home watching TV in my pajamas and I don't care anymore, which is so not me. I just have nothing to give. I'll be happy if I can just get out for some air, which I will likely do, up to it or not, because I'm out of my beta blocker (thank goodness it's free!) and though I hardly have any gas, I'm going take the trip anyhow, this weekend will be rough enough without the added fun of my heart going extra crazy!
Ah, but I'm rambling again. I should rename this blog, My Virtual Ramblings, lol.

Now for the Science

Have a couple of interesting articles I wanted to share.

One is basically, as far as I can tell with my current attention/concentration span, about viruses, and how they can get into your brain and affect different parts of your neurological system, and how once they get in you, you're pretty much stuck with them, and if you're lucky your body can keep them at bay, if not... (I didn't say it was good news!) I think it might also explain my developing what seems much like ADD (when I was trying to clean the other day, I realized that part of the reason I seemed to be getting nowhere is that I couldn't focus! I'd go in one room, pick something up, on my way to the trash, see something else, start doing that, get distracted...ugh! Plus the memory problems...what was I doing again?)

Oh yeah, so here THAT is:

Encephalomyelitis Is an Unusual Complication of Infection with Encephalitic Viruses


That posted, it occurs to me to ask...anyone else taking reverse transcriptase inhibiting anti-virals who wears contacts notice any yucky stuff coming off with them? It's like protein build-up, when you take them out you can see clear little squigglies like oil residue floating in the case...I'm guessing possibly some waste product from the cells that can't duplicate the viral RNA because of it? Funny thing is, I had it when I was on that Guaifenesin Protocol as well...I think that's when I got the idea it might be protein, but this stuff is way worse, doesn't just make them gooky, it makes them stiff & unwearable way faster than usual. That or phosphates. I'm sure that all sounds totally whacky to anyone who hasn't experienced it, but it's been bugging me, and I keep forgetting to write it down to ask the doctor.

The other article is titled: Increased plasma peroxides as a marker of oxidative stress in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Basically what I can glean from that is that a symptom specific to CFS is that we are oxidizing faster than the average person, which as you can guess if you're a user of anti-aging skin creams, is probably not a good thing. Does it mean we're aging faster? (The reason for all my grey hair?) Not sure. But I'm pretty sure it does mean our bodies in general are going downhill faster. Cells, organs, tissues...all getting worn out and dying and having to be replaced faster...yup, that sounds kinda bad. (Although I think I may be missing a key point unless I point out that perhaps they are thinking this could lead to a diagnostic test of some kind? I would think lots of diseases lead to oxidative stress though, no?) I could be wrong, I'm not a doctor of any kind, after all, but I think I'm gonna have myself an extra serving of Goji berries, just in case... (My brother got on an unexpected health kick after watching a documentary about how crappy our food is these days, and got me into them. He says that besides giving him an energy boost and being amongst the best anti-oxidants known to man, they keep him regular. Ah, the things that begin to matter when you are quickly approaching thirty! Hang in there little brother it's gonna be alright...it's surprising the things your body throws at you to let you know you are definitely not a kid anymore, but hey...you'll be ok.)

So eat your Goji Berries boys and girls! Even if you don't need to be regular, the anti-oxidants can't hurt. And I think they do give you a little kick. :)

Reactivation of Herpes Family Viruses with Epilepsy Drug

http://www.reuters.com/article/idUSTRE67O4QQ20100825

Why is this relevant you might ask? Well, the Herpes family of viruses is not what most people imagine, namely the STD. The Herpes family of viruses includes the virus that causes Chickenpox, Shingles, and Mononucleosis (Epstein Barr).

Interestingly, I took Neurontin for severe foot pain (which I now believe was in part due to blood pooling, and exacerbated by the overproduction of pain chemicals common in Fibromyalgia) and while I had expected for my other symptoms to improve during that time, as I was finally able to rest and de-stress (it was when I first moved in with my Dad) I actually got weaker, sicker, and generally worse...
(Incidentally, it was suspected had Epstein Barr about 15 years ago.)

Hmm...

A New Fibromyalgia Remedy: Antiviral Drugs - US News and World Report

Though I feel this is a bit oversimplified, I think it's an interesting article, especially the part about the allergies!

A New Fibromyalgia Remedy: Antiviral Drugs - US News and World Report

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Getting Better

Well, Things are improving. My heart rhythm has normalized. Only two short episodes yesterday, and one today.

I had an unexpected little windfall, and got to go do a little Christmas shopping for those who are nearest and dearest. That made my weekend. It probably sounds a bit trite, but I really don't even mind that much if I don't get anything, it's the giving I love.

It seems I'm also going to get to do the Christmas Eve thing after all. Should be nice, I miss those peeps. Though I do have a bit of anxiety over the whole inevitable what have you been up to routine. Hmm. Well, nothing much...just being sick, losing my apartment cuz I can't work enough to make a living, getting sicker, having to move to another county with my Dad in a Senior Community, away from my newly constructed life, and then getting even sicker...Yeah, that one's definitely TMI.
The other strategy is to go with as much vaguness as possible, and/or whipping out my silver linings and highlight good sounding half truths and let you assume it's all good cuz that's what you want routine, lol.
Ah, life with chronic invisible illness...

The Fog has been kicking my butt this weekend. I couldn't seem to figure out why, what was different, it had been so much better for awhile there. Was thinking maybe the antiviral. Or maybe cuz I stopped taking some digestive enzymes I ran out of?

Then I realized, I took some Gabapentin for my cramps last week for a couple of days. Nothing else was touching them, even my normally low blood pressure was high (I'd never seen it high!) so I decided to try some Neurontin, cuz I was getting desperate, and VOILA! From one moment to the next, the nagging pain was just GONE. It was such an amazing moment. I'm not sure I even realized how bad it was until it was gone, and then suddenly I could breathe normally again and relax, it was like a weight had been lifted. Now I'm pretty positive it's that whole central nervous system pain sensitization deal, there was no reason for that much pain. My body's just blowing it outta proportion firing away w/the substance P or however that works.
But yeah, Gabapentin does a NUMBER on my brain function. I swear, today it was like I'd lost like 40 IQ points or something. I spent an hour trying to keep straight how many presents I needed for who, and they were all the same thing, only like 5 of them, just different colors! And as for making decisions? AHHHHH!!!!!!!

Oh, that reminds me of something I've been meaning to write about: The prevalence of Endometriosis in women with CFS & FM. I've seen figures as high as 50% of all women with Endo having FM or CFS as well. Interesting, huh? Even more interesting, my doctor, who believes a virus is at the root of CFS, claims that the viruses attack the male and female sex organs...
He asked me if I was sure I had Endo, I told him that's what they told me when they did the surgery to extract it...he went in and read the surgery report to me, and lo and behold...the wording the surgeon used seemed to intentionally avoid positively confirming that what she'd found was definitely Endometriosis! I thought that was pretty trippy.

Here's a related article:

http://news.bio-medicine.org/biology-news-2/US-researchers-find-endometriosis-associated-with-wide-range-of-diseases-6660-1/

Next time, I'll be blogging about my lust for electronic PT Type gadgets...I totally wasted some time, with feet killing me and exhausted, lusting over a vibrating neck heating pad (shoulders/neck KILLING me when I'm on here lately) and massaging slippers...Ah, to dream, perchance...

CFS & Viruses

Found this great link to an article about CFS & Viruses, an interview w/Dr. Chia.

Also, an article about Oxymatrine:

Unfortunately, it looks like I may have to change the name of my blog...

http://phoenix-cfs.org/IntChia1.html

http://phoenix-cfs.org/TrtOxymatrine.html

A Bump in the Road

Warning: This will probably not be a cheery post.

I had a pretty good couple of weeks. My head was clearing, the fog was retreating, I had more and more hours were the invisible barriers that sometimes seem to plague my existence were gone. More energy. A life I could live with seemed right at my fingertips, I could touch it but not quite grab it, and I wanted to do as much as I could to make up for months of business not taken care of. I knew it wouldn't last, but that doesn't make it any easier.
That's the kicker with these illnesses. If I were forever miserable, or lost a limb, I think I could learn to cope with that, maybe even overcome it; it's a constant. But going from good to bad at any given week, day, hour, or moment, that is the challenge. And it messes with your head.

That's what's getting me down right now. I'm a problem solver by nature. But I can't seem to adjust and figure this one out. I so would love to be one of those inspirational chicks who lives well with chronic illness. Sometimes, I wonder if maybe they had it easier, in that they had their illness to contend with, but everything else wasn't falling down around them. If that was it, I think I could finally be happy. If I knew I was safe and ultimately would have people to count on to watch out for me if things got too bad. But I don't feel I have that. I'm still in survival mode. (Granted, one never knows what really goes on in other people's lives, we see what they want us to see much of the time, and I'm by no means trying to diminish their success.)

So days like this, it takes all the strength I have not to go unhinged.
I'm exhausted. I barely slept last night, was woken up by heart palpitations. One of my most feared symptoms, are the cardiac ones, because even though I have an idea what causes it, and I know I'm not alone, most doctors don't. Days like this I spend torn between going to the Emergency Room, and telling myself nothing bad has come of it yet and I should just ignore it. Until, like now, it's definitely time to sleep, but when I lie down there's nothing to drown out the pounding of my heart.

See, I've been to the hospital about 3 times for this type of thing. Once by the time they saw me, it was better (though it came back later, but I wasn't about to go back to wait in the ER again, I was exhausted, and the chairs at county, and sitting for long periods are not Fibro-friendly) another time, I went and they did tons of tests and found nothing much wrong. The one time they seemed alarmed and took me seriously, all they did was temporarily fix it by dripping a saline IV into me for a couple hours and refer me for a test that was done incorrectly and was pretty distressing. (Try hanging upright on a table for 45 minutes w/people staring at you waiting for you to faint, then pumping you w/some drug to try it again, having your heart wig out, next thing you know it seems the doctor is trying to choke you with his hands on your throat digging down into your clavicle so you don't know what will kill you first, your heart and the not being able to breathe, or the doctor who seems to have gone mad but is really performing carotid artery massage to get your heart pumping normally again...)

The idea that I might go and they won't find anything and I'll run into a doctor who still thinks FM & CFS aren't real and that I'm a nut helps keep me home. I'm still bruised from a recent emotional upheaval, and not up to attempting to educate doctors.

I took some medicine, not specifically for that, but meant to address the CFS in general, and it seemed to help, which was very heartening. But it didn't last, and my next dose isn't for hours. I contemplate calling the answering service of the doctor who prescribed it and seems to be able to connect all these symptoms, to get his opinion, but I'd feel bad waking him up, if they even do that...

I'm so exhausted, but if I lie down, it's harder to ignore and it's hard to keep it from freaking me out. It seems different, too. Usually my BP is really low, and my pulse is racing. This time it's just pounding and occasionally the rhythm feels off.
My soul just feels so weary of all of this. Tired of fighting one thing after another. One day to breathe, another to be upright, another the fatigue, or pain, my brain feeling like a pretzel, or just attempting to overcome all the problems that come with not being able to hold a regular job, and having a condition the SSA is extremely skeptical of.
And then come those blessed good days that I'm so grateful for and make me forget the bad ones; until they're over, and the change isn't always gradual, sometimes it just hits you like a pile of bricks and it's like,
"Wait! What happened?"

All I want is to be able to make a living, be reliable, feel like a responsible, dignified, halfway normal adult again, have confidence that I can take care of myself, and move forward with my life and be happy. It really doesn't take a lot to make me happy...I reach out and grab happiness when I can find it, usually, and hold on tight.

I've been considering, and a dear friend today reminded me that there is no shame in taking anti-depressants. But I've been fighting having to add another pill to my array of meds and supplements, especially one that if I run out of will leave me with little electric zap reminders to the brain, tingly lips, and slight episodes of vertigo and the sensation of being off somehow, in its wake. I haven't even been that depressed lately, it's just the emotional rollercoaster...I'm a pretty emotionally sensitive person, and I've been through hell these last couple of years...at times, it could be an asset to feel things so deeply, but right now it seems like just another thing exhausting me, and I wouldn't mind getting off that ride for a bit.

Alrighty folks, my heart seems to have settled down for the moment. Maybe I can sneak off and go to sleep before it realizes I know...Shhhh... ;)

Oh, and any tips from anyone with experience with ,these kinds of symptoms would be greatly appreciated. I know you must be out there, somewhere...