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.

TLC, Giving, & Tx

First, I suppose I should apologize if I've come off a bit bitter, I was going for sarcastic but positive, and somehow it just doesn't come off on the page as well as it does in my head.

I am okay. I've done nothing all year but hang on and try not to rail against it all too much. I just kept telling myself, a few more months till the hearing, a few more months till the decision...I guess the TLC I received helped, as well as what I got to give some here & there, too. I hadn't realized what a huge thing that was, what a piece of me was malnourished, it feels so good to give. Giving makes you feel useful. Yup, sick people need to feel useful, too! Let us help! (But don't get mad if we can't.)Or at least, let us love, yeah, awww!

I'm so grateful, too, that my brain has been working. Not continuously, but still better than in years. I can remember phone numbers again! If I'm really worn out, it gets worse again, like, a few weeks back I spent a couple of weeks at my Mom's and was dying to go home, because my brain was all pretzeled up trying to keep track of my toiletries & medications & things, as well as remember where her kitchen things/toiletries were located and I kept forgetting why I'd walked into rooms, which is infuriating(see, when I say I'm better, it's relative, cuz you'd think having stayed there for roughly half the year altogether I'd know where stuff was, but...I'll take it. I just hope it doesn't bail on me if I have to get a job. I'll beat if up if it does.)

My fatigue, it's hard to say. I feel like it's better, but maybe that's just because I choose not to think of it. I just lie down/recline whenever I feel compelled to, which is often if you're not me, but doesn't seem like a big deal to me, not sure if it's fatigue, or the weird nearly imperceptible signals of my dysautonomia pushing me to do it. The confusion is compounded by the fact that I'm feeling good, great even, the last couple of days, but in honesty, looking back the last month or so have been rough, symptom-wise, and it's not like my "great" is normal. Lots of Tachycardia, I think I ran out of Metoprolol, my beta blocker for the POTS twice this summer, and then I also ran out of the Immune Support supplement I was taking. Mushrooms. I've discovered mushrooms are VERY useful. Not that the anti-viral I am taking doesn't help, I was out of that for a few days and all hell was breaking loose, so that seems to be the keystone in my current treatment, but definitely enhanced by the Immune Balance supplement; the ingredients being Beta Glucans and a cocktail of Reishi, Maitake, and Cordyceps I believe.
I also found a bottle of Cordyceps, and found it seemed to work as well if not better for my immune system, plus I think I've seen my endurance strengthen, perhaps emotionally as well as physically. Wait, I take that back. It's more like it increases my ability to push myself, as, like I've said, I've tried to spruce the place up a bit, and that has caused some actual sweating, which felt amazing, ahh! But I have to admit that I also had more tachycardia flareups, which I got frustrated enough with to stop letting them push me around. Yes, I dared them to mess with me! As long as I'm not completely out of breath from them or getting cold, I try and go about business as usual. Before this laptop found me, I was having major issues with pins and needles and iciness in my feet, even cold sweats & nausea from sitting at the computer, but I even got stubborn with that...but pushing past it made me feel weird though, I almost couldn't sleep, I felt this tense, over-amped feeling like someone gave me meth and my muscles were too tight, breathing too shallow. I suppose it has something to do with the autonomic nervous system's control of epinephrine or something related.

Allergies, are sucking, contrary to what the SSA presumed. (That they must be non-existent because I haven't gotten treatment. MSI doesn't cover allergists, so...) I guess I forgot to mention, too, that I actually was taking 4x the normal dose of antihistamines plus natural supplements & sometimes nasal rinses to keep the excruciating sinus headaches at bay? Well, I decided to cut back on the antihistamines cuz I was running out and I felt wary of side effects at that dose, and then my allergy supplement got discontinued! Inflatrol, lovely enzymes, quercetin, turmeric, etc. I've managed to get new supplements with those in the, but they're not working the same, or my body does agree that a double dose of antihistamines is enough and wants me to make it quadruple again? It's usually like this. When I finally get them under control by about the third week, I have to stop taking the supplements because they thin my blood too much and if I keep taking them that last week, I will menstruate indefinitely, eww, I know. That time of month I'm utterly screwed. Not only do I get angry, senstive, and weepy, but my allergies are awful, my blood pressure drops and I can't have salt to raise it because I will not only bloat up but this will cause excruciating cramps and/or bladder pain. (Because my IC acts up, even if it's been good for weeks, that week, ow. (Another assumption the SSA made.) I also re-started taking an Indole 3 Carbinole supplement because my Endometriosis and other hormonal issues are acting up again, ugh. (I'd started eating soy again, big mistake as far as Endo. Another development, I'm anemic, and finally convinced maybe I need to eat meat again...but I can't bring myself to.)Been wanting to check w/my Dr. to make sure it wasn't the anti-viral causing it, but with all the family chaos in addition to my own turmoil, brokeness, and phone being cut off so I could help feed a family member, I missed my last couple of appointments :( I've been hanging on, but that doesn't mean it hasn't been emotionally overwhelming, and I have no tolerance for stress, so I've been missing a beat or two occasionally...)
Huh, you'd think all that would bum me out, but it doesn't, really, it's just my life. I do my best to try and live in the moment, because my sanity depends on it. So I will keep going to the park to take pictures of the beautiful scenery, play with and photograph my Mom's adorable doggie, get joy & satisfaction from little things, and on my never-ending quest to be a better me. Hopefully a me with more cash, and less weight! (I joined a really cheap new gym, awesome deal, under $20 gets you free tanning(?!?) & hydromassage, & a guest pass. So if I feel crummy I can bribe myself to the gym with a massage, which more than likely increase my circulation enough so I feel better, and then I'm already at the gym! Brilliant, no?)OMG, I think I'm watching Jay Leno without meaning to, and I swore I never would again after the Conan debacle! Gasp! Must go!

Stress Eating and Magic Mushrooms?

Ah, it must be that time of year again. The last 3 months of the year, when I find myself getting a bit frantic. The sunshine is slipping away (ok, so we had a heat wave here in California last week, but still!) the days are getting shorter...the holidays are quickly approaching, which is tough when you're broke and can't do much about it. History shows that this time of year can be a frantic struggle for me to hang onto my sanity. I start losing hope, depression begins to creep in, and I want to be well, YESTERDAY.

This year, time has slipped by so fast that I'm half dazed when I try and accept that it's nearly halfway through October...but I feel the crisis creeping in, in the form of a scarcely controllable urge to stuff my face! What's more, I hardly even care. I'm SO anxious so much of the time, and it manifests itself as an urge to eat. Which yes, I can recognize, which seems like a good thing, but I think it might be making me even more anxious!

I suppose a big factor is the kitty. As I mentioned before, my fur-kid of 15 years has developed Chronic Renal Failure. It's been quite a fight to get her stable (not sure if we're truly even there yet) the last month or so. I've had to do lots of research, since I couldn't afford any more multiple trips to the vet, but I found myself in good hands, as apparently, many cats live well with this disease for years, and there is a wealth of information on the Internet about how to manage it. By pure grace I've been blessed to be clear-headed enough to mostly digest it well, though I've still had to re-read it multiple times, I am truly grateful that the fog mercifully lifted enough for me to take advantage of that.

I haven't been sleeping well, and I suppose that's a first sign; when I start waking up early and not being able to get back to sleep, it's a sure sign of extreme stress. I've had to give her pills, hand/force feed her food, stick needles in her to hydrate her...She is the closest thing to a child I have, and hard as it's been, I had no choice, and fortunately, I still have a little bit of that part of me that takes charge in an emergency. Actually, I'd been feeling gracefully calm and relaxed (finally!) before she got sick...so maybe my adrenals had begun to replenish themselves. But it's been exhausting. To be feeling sick and exhausted and know you have to hand feed your cat wet food, despite her razor sharp teeth and lack of cooperation...Or steel yourself to stick a sharp needle through her skin, and keep her from wiggling away as water leaks from it under her skin? Yikes. Ha, as I write this I begin to realize why I have been feeling SO stressed and exhausted. But the reward is, there she is, happily napping away on her meditation pillow, if not as healthy-looking as before, pretty close enough.

I guess the gaining the extra pounds back won't be the end of the world, especially since it's not like I'm dating at the moment. I've given up on the gym as well. (My shoulder's still recovering from giving in to the temptation to vent my frustration on the arm cycle, and the last time I was going to go, by a fluke, checking out an erroneous theory, I found out I had a fever...didn't want any infection being driven towards my heart, I have enough problems already!)

So anyways, what's this about Magic Mushrooms? Well, no worries, they're not hallucinogenic. They are magic because they are said to restore the balance between the Th1 and Th2 parts of the immune system... Ganoderma Lucidum, aka Reishi Mushrooms...Crazy, frantic girl that I am, I've begun taking some tea, and the results were nearly immediate. Within hours glands in different parts of my body were swelling and tender...This is a good thing, I believe, because as my doctor and many articles have explained, my immune system, if it were normal, would have fought off the Enteroviral infections I have. So if I'm getting all sore-throaty, swollen glandy, that means it's making it work properly, no? I sure hope so...

Incidentally, it also seems to have a very subtle, relaxing effect on me, much like Ashwagandha...Not quite enough to ease my binge-inducing anxiety, but it's definitely taken an edge off...More on those later...

Now, my mission is SLEEP. I'll let you know if it's successful...

Doctor's Visit, Cimetidine vs. the Immune System

I've been trying to get around to posting since Monday, but it seems like the trip up to L.A. is taking more and more out of me lately.
I seem to spend days recovering my energy.
Anyhow, it went wonderfully. My doctor was a sweetheart, it didn't turn out as expensive as I'd feared, and I came away with a new treatment option.

Unfortunately, the trip up there took a bit out of me as well, plus with brain fog rising back up lately, I just couldn't concentrate on some very interesting info the doctor shared with me on what he thought of XMRV and some tests being done. I remember the info, I just can't seem to make it fit together, so I figure if I come across something related later on, it will probably make sense.

As for the "new" treatment, he suggested I try, of all things, Tagamet, aka cimetidine. Normally used as an antacid, it turns out cimetidine has been used off-label to modulate the immune system, specifically in the treatment of viruses that cause warts. The key word of course, being "viruses". (I can hardly believe I'd never heard this one before!)
But yes, I did some research, and my findings were quite interesting.

So my plan is to get back on the oxymatrine/herbal supplement I was taking (as I've realized that the brain fog began to get worse about the time I stopped it, and with a little prodding from the doc, that the aches & pains & fatigue and feverishness increased around the same time) keep taking the lamivudine (anti-viral commonly used in HIV & Hepatitis which has shown some effectiveness against strains of the Coxsackie B virus) and start the cimetidine. And once again, I will wait. And see.
And I will try and do it patiently. :)

Here are some links regarding Cimetidine and CFS/Viruses/Immune System Function. Also, I was quite interested to see that it has also been used as a treatment for such illnesses as PCOS (Polycystic Ovary Syndrome) Fibroids, Endometriosis, and other "estrogen dominant" disorders, as well as for Interstitial Cystitis (per Wikipedia, source cited). I'm curious to see as well, if it helps control my allergies (being a histamine blocker) and helps my stomach at all. (I also read a tidbit somewhere about it being good to take probiotics with an acid blocking medication for better effectiveness.) Very interesting stuff...


Tagamet on Wikipedia (before you scoff, it has plenty of citations)


Tagamet and CFS

More info on Cimetidine
AboutMeCFS Forum - Tagamet

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