I think I’ve hit “the moment” in my treatment.

Yes, I have heard the news about the Whittemore Peterson Institute, but I don’t want to dampen my good news with such a topic, though it troubles me greatly. I will say, however, that I stand by Dr. Mikovits and anxiously await her new endeavors.

Secondly, it’s so.. conflicting.. for me to write of my good news in the wake of so many M.E. deaths. We’ve had five in just over a month? Maybe it’s the result of me being more in the community that I hear about it more? I’m not sure. :( But the death rate of 1 in 20 is beginning to sound like a myth, at this point.

Such is the reason why we cannot afford these petty arguments amongst the best researchers and institutions that we have on our side.

But my main reason to write is that… I AM FEELING SO MUCH BETTER. I expected things to have a good spell and then back down, as is common for us “Lymies,” but nope!

The Bactrim is treating me very well. I suspected it might, because it’s in the sulfa class and I respond well to those, for whatever reason, but this is truly remarkable. He wanted me on Bactrim DS (double strength), but as is usual for me, I could only tolerate the normal dose; taking one DS tablet put me in a state of being unable to move for four hours. Since when do antibiotic cause such drowsiness???

The herxing is mainly dizziness (which seems standard with any antibiotic I start), and I get anxiety after my night Rifampin dose like I used to a while back–it’s not severe enough to cause me to not take any of my medication, though. The seeming-optic-neuritis-thing went away after about a week, thankfully. I’ve been coughing  a lot more than usual, which is slightly troubling, and my eye twitches are happening more frequently? My mid-week flares (that are still falling from Tuesday-Thursday) are still present (headache, fatigue, dizziness, blood pressure problems, shin pain, mild fever) but not as severe, either! I had a light dotted rash on my feet the other day, but it was very faint. And the cardiac complications I’ve mentioned in previous posts, are gone! I guess it was just a herx from whatever bacteria had caused it to worsen? Or something? For all I know the Zithro may have been behind it…though it’s ironic timing that the symptoms got worse the same time the zithro apparently stopped being effective. (How depressing that azithromycin creates resistant bacteria so quickly!) Either way, those symptoms are gone. I see my cardiologist on Friday for my echo, and get my bloodwork done on Thursday to check my immune system, kidney, and liver function.

I have reason to believe my eosinophils might be elevated again: They do so whenever I either have to stop antibiotics prematurely, or when I get a new infection. Eosinophilia was actually one of the clinical clues that I had gotten something infectious, after contracting the bartonella and mycoplasma in 2008. One thing I don’t have an explanation for is that my menstrual cycle has vanished. Give me another week and I’d have skipped two months! And I’m definitely not pregnant! This is also something that happened when I got the 2008-bugs, so perhaps that, and the eosinophilia, etc., are all related, and things will even out when the bugs finish dying. :)

I”m definitely not getting worse, so I’m inclined to believe the antibiotics have been/are fighting whatever new infection I got from those new fleas! Yay!

The other day I went to Walmart, with no sunglasses, and no earplugs, and I walked on my own, with no cane nor wheelchair nor mobility scooter to help me. All right, I leaned on the shopping cart, but who doesn’t? It was a huge moment, and it shows me where I will be headed once we kill the rest of the bugs. I haven’t been able to stand up and shop for myself in over a year… I wouldn’t be able to last forever like that, but still, I was walking and standing in a supermarket for twenty minutes! That is huge!

Generally speaking (evening out the good days with bad days), if I were to rank myself on the ability scale now, I would say I am at 40% physical ability, 45% cognitive ability, and 50% symptom severity. Since my last checkpoint in May, that’s twice as good physically, 10% better cognitively, and 22% better symptom-wise! Also, if you look at the list I made then, I’ve gotten goals 1 and 2 out of the way, I’m working on doing 3 right now, and hopefully will be getting to 4-5 soon!

I’ll probably post next with my lab and echo results, etc., and who knows, maybe even more good news. To my dear readers, remember to be gentle with yourself; your body is doing the very best job it knows how.

a rainbow at night

July IGeneX results.

So a few weeks ago my IGeneX results returned to me.

  1. My Lyme test is more positive. This is actually good, believe it or not! As you improve and your immune system is less burdened, you get more positive results. I now have bands 31, 34, 39–the most Lyme-specific of all, 41, and 58. I’ve never had band 58 before, and I’m not happy about it because this means the bacteria are now resistant to my fever response. This might explain why I don’t even get fevers during my Lyme flares, anymore. (See, this is your proof that they evolve.) And my band 41 now has THREE stars next to it… I didn’t even know you could get three stars! I.e., a very very positive band! I applaud my immune system for its abundance of “+” marks, whereas I’m usually only capable of “IND” bands, the very weakest positive response.
  2. NO Anaplasmosis. Also good! (Tested via IFA.)
  3. NO Babesiosis. VERY good! (Tested via IFA and FISH.)
  4. Possible exposure to either Erlichiosis (HME) or (and most likely) Rickettsia. I’m thinking Rickettsia felis–aka flea-borne spotted fever–is the most probable suspect, given my history of hundreds of catflea bites and the fact that I had a changing spotted rash on my feet for two years afterward. Good news is, Rifampin can treat it, which I’m already on, so. My results are technically showing exposure to E. chaffeensis, but it says on the paper it can cross-react with at least four other types of bugs, including all Rickettsia species.
  5. I FINALLY SHOW EXPOSURE TO BARTONELLA. So take THAT, fifteen other insensitive tests from Quest and Labcorp that said I never had it!!!

Both the Erlichliosis/Rickettsia and Bartonella tests were in the middle category of either resolving or active infection, depending upon your levels and symptoms. My bartonella score was basically borderline positive, but both results came from my IgG, i.e., where I have my immunodeficiency (PIDD, and the reason most of my tests don’t show positive). Which means, if I weren’t immunodeficient and had normal levels of Immunoglobulin G, the scores would have been higher, possibly high enough to surpass the “bordeline” category. Or at least, my bartonella result would be. Regardless of anything, I do have the bacteria antibodies. I am fighting it.

If I don’t have the Rickettsia…well I just HOPE I have/had that one instead of the Ehrlichiosis! It must be the easiest to treat, because I no longer have the spots on my feet and the IgG for it was the lowest it could have been without being negative: Anything below 40 is negative, and I got.. a 40. Accommodating for my PIDD, and it’d probably be slightly higher, but this is nothing to worry about, I don’t think. With no obvious symptoms and such low levels this is most likely in the “resolving infection” category rather than “active infection” (in contrast to the bartonella whose titers are much higher and symptoms still active). Perhaps it is also low because of the cross-reaction factor? I was tested for E. chaffeensis, so if I tested specifically for Rickettsia antibodies, would it be slightly higher? Who knows.

But mainly I am so, so elated that we finally have something that says, Look, the bartonella is here, in contrast to the.. dozen or so other tests I’ve had in the past two years that said I never had it. Pfft! (Only in the chronic illness circle are you happy when tests show something is wrong.) I wish I would have gotten tested for this via IGeneX, sooner! These are my results after six months of Rifampin and Zithro–I only wonder what they’d have been in the beginning!

And by the way. The bartonella species I tested positive for was B. henselae–the cat scratch disease variety! I wasn’t even tested for B. quintana, the type that does the classic five-day fever cycle like I have… So, based upon my symptoms and flare cycle, there’s a high chance that I actually do have them both like I feared last year. (Cat fleas can carry up to five different species of bartonella.) Speaking of that, if I’m correct, B. henselae follows more of a seven day cycle, or at least a less-defined flare cycle than the B. quintana strain… So there: Maybe the bartonella seriously is the reason my Saturdays are so “inexplicably” and yet, reliably, messed up recently…!

As far as how I feel about the results… In a sense, I’m a little relieved to find out that I’ve had two strains of bartonella, and one other resolving (most likely but unconfirmed) Rickettsial infection. It helps me better understand why I became so unimaginably ill within such a short time frame.

I’ve always thought, How on earth can two infections at once bring me down that quickly, even if I did have M.E…. But basically (already having the Lyme for two years, albeit unknowingly) within a matter of two months, I got four infections at once: The bartonella and rickettsia strains from hundreds of catflea bites, and Mycoplasma pneumoniae from the children of a family that came to stay at my house during a bad storm. It makes me think that, even though I was already steadily going downhill with the undiagnosed Lyme disease, at least it did take more than two additional bugs to bring me to almost completely bedridden within eight months.

This is also proof that a negative test means nothing. People need to realize this fact, above all else. We do not have adequate testing–your levels have to be very obvious and you need to have a functioning immune system in order for the routine tests to work. Those are the conditions they were designed to work under, and even then, the CDC admits their inaccuracies are very high. There is a REASON Lyme disease is the fastest spreading infectious disease in the United States.

If you’ve ever been diagnosed with MS, ALS, Parkinsons, RA, Lupus, CFS, or Fibromyalgia, please find an LLMD–Lyme Literate Medical Physican, the people who risk their lives to stand up to the infectious disease society and treat people who are dying–or someone else who completely undestands how common these tickborne (and fleaborne!) infections are becoming. Yes, all of those aforementioned illnesses can exist on their own, but far too many doctors unknowingly use them as catch-all categories due to their ignorance of infectious diseases such as Lyme disease and Mycoplasma. And even if you have M.E., you still need to be tested, because we are suspectible to infections that most people don’t even have to think about. (You’d be well off reading a pamphlet on having HIV, and how to avoid things–like kittens!–that are considered high risk for the immunocompromised.) Lyme can also cause false positives on autoimmune tests (such as ANA and ESR), so even having “confirmation” such as that is no merit to say you’re safe. Everyone owes it to themselves to make sure they don’t have a treatable infection like this; especially when it can and does lead to death if not treated.

a rainbow at night

My old nemesis, PMDD!

…I can’t mentally cope with all the things that are happening with XMRV. There are lots of people/blogs dealing with that, so you can visit them, if you want commentary. Just know that I’m not surprised in the least, and right now I think people who ARE surprised have forgotten what kind of a world we live in…

But yes, for the past week I’ve had.. well, first off, NOT a Lyme flare up! :) But, I have been having another type of “flare up,” if you will, of something I’ve dealt with for the past ten years: Premenstrual Dysphoric Disorder (PMDD). And no, it’s not just extra-difficult PMS (at least not if you ask me). Sometimes it feels more like a mild form of psychosis (sans hallucinations) than a type of dysphoria. It destroys your perception of what is actually going on around you. It can be strong enough to make you want to commit suicide. It occurs two weeks before menstruation, and then when menstruation begins, the PMDD symptoms go away. For me, I don’t find PMDD to be that similar to PMS, but everyone is different. As far as I’m aware, no one has come up with a way to cure it, yet, or even know what causes it; in 2007 there was talk of a genetic predisposition. There is also a lot of talk about exercise and diet making it better, but diet and exercise make nearly any condition better; it’s not enough to make the difference between suicidal and not suicidal. It sounds to me like the usual “we don’t understand it or think it’s real, so just get outside more and you’ll be okay.” One of my psychology professors in university thought it was just a made-up term for people who wanted more attention.

Premenstrual Dysphoric Disorder (my symptoms in bold)

  • feelings of deep sadness or despair, possible suicide ideation
  • feelings of tension or anxiety
  • increased sensitivity to rejection or criticism
  • panic attacks
  • mood swings, crying
  • lasting irritability or anger, increased interpersonal conflicts; typically sufferers are unaware of the impact they have on those close to them
  • apathy or disinterest in daily activities and relationships
  • difficulty concentrating
  • fatigue
  • food cravings or binge eating
  • hypersomnia, sleeping more than usual; or (in a smaller group of sufferers), insomnia, being unable to sleep
  • feeling overwhelmed or feelings of being out of control
  • increase or decrease in sex drive
  • increased need for emotional closeness

My main fix is Zoloft. (And having M.E., a very, very small dose of Zoloft.) I usually take it for two weeks at a time, every three months, and I haven’t had PMDD in two years because of this; it resets my brain chemistry so it doesn’t fall off kilter whenever a trigger like hormone fluctuations comes along. But after getting all the migraines, having to start Topamax, and being unable to have caffeine, that left only Treximet to treat the migraines that were still popping up, and you cannot take antidepressants with Treximet. So I haven’t been able to take any preventative Zoloft since.. January, while I waited to see how long things would take to stabilize the Migraine part. I’m not frequently getting them anymore, so I started my Zoloft this morning. Within three or four days, I’ll be much better.

Yesterday I had a bartonella flare up on top of all the PMDD madness, so I was a complete emotional wreck. (Fever of 99.5 which was probably a regular 99.2 but your temp elevates slightly before your menses.) Life wasn’t helping. Thankfully, today is here! But last night I decided to take one of those online psychiatric evalutation-type tests that I’ve played with over the years. My results were pretty shocking!

Disorder Rating
Paranoid: Very High
Schizoid: High
Schizotypal: Very High
Antisocial: Low
Borderline: Moderate
Histrionic: Moderate
Narcissistic: High
Avoidant: Very High
Dependent: High
Obsessive-Compulsive: High

Personality Disorder Test
Personality Disorder Information

I know what my usual results are, and they are not that. So, in case you needed a visual of what PMDD (and bartonella) can do, there you go. They can take someone perfectly sane, and turn them into that.

a rainbow at night

Still waiting…

Times like this when I wonder if my treatment has stalled out, or if I’m just being impatient.

I think the breathing episodes from yesterday could have been the result of redirected blood flow to my intestines, even though I didn’t eat a lot. I had a small episode of breathlessness about two hours after last night’s Rifampin, and again two hours after today’s. The culprit was dysautonomia, which has been getting more irritable since this last Lyme flare started, as I mentioned here in reference to the numbness rearing up again. After the digestion stopped, things went back to normal again. I can’t say for sure that’s what happened for three hours yesterday, but it’s worthy of note, regardless. My limbs went numb, and I had physical symptoms of anxiety without the mental anxiety; typical of “the episodes.” It’s like I’m herxing worse, for some strange reason.

Today I’ve been in another limbo. The entire day has been a back-and-forth of “I feel okay” to “I feel horrible.” I wish it would just pick one so I know how to react. This instability is maddening. Right now I’m in one of the bad parts, and my evening headache has arrived so I’m on more Lortab. I need to add ibuprofen because the other one alone does not relieve inflammation and therefore doesn’t do much. My eyes hurt and are sensitive. My neck hurts. It’s been hurting a lot recently, actually. It now pains me to look downward, and I can’t past a certain point, which I noticed today. I halfway wonder if I’m dealing with subclinical meningitis. I mean, if it can happen in syphilis (A chronic subclinical meningitis (meningismus) is sometimes associated with syphilis)… There’s no telling what goes on inside you when you have at least three infections in your brain and spinal cord. (Ironically, the next few lines after that quote talk about offering Rifampin as a treatment…! The book is about the hidden connection of AIDS and syphilis; in modern days, we’re dealing with the same retrovirus + spirochete combination, except now, it’s XMRV and Lyme.)

It feels like I go through stages with the headaches, as well? Honestly, the strange patterns these diseases take. I go through a spell where I barely have any headaches, and then I go through a few weeks where I get them daily. And back and forth.

You know what I don’t feel the need to do anymore? To say I’m thankful. To remind people that even though I’m frustrated, I do appreciate the things I have. I used to care too much of what people thought, and that if I took a moment to explain why I was distraught, someone might take the wrong way and just act like one of my doctors or ill-advised family members and respond with, “You just need a better attitude! Think of the positive!” Well, I no longer feel the need to explain that I always do that, even on the days that I’m frustrated. If I can gain any lesson from days like this, I’ll take that one.

a rainbow at night

Article: On CDC website, study finds no XMRV in Fibromyalgia patients

…What? Were you expecting anything different from them?

Full article.

Fibromyalgia is a multifactor condition characterized by widespread pain and diffuse tenderness. Although trauma and stress can worsen or even precipitate development of the syndrome, infections with certain viruses, including hepatitis C virus and HIV, have been associated with development of fibromyalgia (8). Nevertheless, fibromyalgia remains a disease of unknown etiology. Although CFS is a distinct entity, features shared by both diseases suggest that CFS and fibromyalgia represent the same underlying condition (9).

Really? CFS is “distinct”? Are you kidding me??? You can throw as many people with chronic fatigue and misdiagnoses into a group as you want, it’s not going to create a disease.

Additionally, because they are often accompanied by a noticeable mental health effect (9), the presence of a potential neurotropic retroviral agent in both diseases could explain these similarities.

Is that their way of saying, we might accept a retrovirus to be the cause of why we think you’re mentally disturbed?

Therefore, we studied the presence of XMRV and polytropic MLV–related retroviruses in a group of patients with fibromyalgia.

During January 2010, blood samples were collected from 15 patients in whom fibromyalgia had been previously diagnosed according to American College of Rheumatology criteria (www.rheumatology.org/practice/clinical/classification/  fibromyalgia/1990_Criteria_for_Classification_Fibro.pdf ). Ten healthy blood donors served as controls.

Using highly sensitive PCR tools and a multiple set of primers to detect xenotropic and polytropic MLV–related sequences, we found no evidence of MLV-related sequences in blood cells from fibromyalgia patients or controls. Our results agree with those from studies of CFS cohorts in Europe and North America that also failed to confirm XMRV in blood samples (3–6).

You know what your results DON’T agree with? All the studies that DID find XMRV in other “CFS” patient models.

Technical issues or geographic specificities probably could not account for such a difference; therefore, these negative results raise concerns about the role of XMRV in these syndromes. Nevertheless, with this relatively small population we cannot absolutely exclude an association of XMRV or polytropic MLV–related viruses with fibromyalgia. However, a proportion of fibromyalgia cases with XMRV >22% would be unlikely (3/15 cases, 95% confidence interval 0–3), which is clearly insufficient to support a significant association between XMRV and fibromyalgia.

. . .

Fibromyalgia does not appear to be associated with XMRV or polytropic MLV–related viruses. The role of these new agents in human disease, and specifically in CFS, remains to be clearly confirmed in multicenter and standardized studies.

You know, I’m truly torn here. I don’t expect Fibromyalgia (FM) to be associated with XMRV. Fibromyalgia does not damage the body, and a retrovirus.. well, chances are if you’re a cousin of HIV, you’re going to be doing some damage. But I do expect it to be associated with a grave number of misdiagnosed conditions. For example, when my undiagnosed Lyme disease was beginning to attack me, I had a hard time figuring out why my “fibromyalgia” pain had gotten so much worse, and just blamed it on the weather. And if I had been diagnosed with FM before seeing a doctor who knew about M.E., I would have NEVER gotten any other diagnosis but “fibromyalgia,” and would have gone on–like I see so many people on my support forums doing–wondering why “If fibromyalgia doesn’t cause this or that, then why does this or that happen to me…?” So of course I expect XMRV to turn up somewhere within this fibromyalgia spectrum, just like a lot of people with CFS are not going to have it, while some of them are…

And we have the CDC to thank for that. I really do agree with them about their XMRV & CFS findings, considering their model of CFS, you know. They put a certain type of Chronic Fatigue Syndrome into their research groups–that which is supported by THEIR definition of it, which the world over knows is NOT the type of “CFS” disabling and killing people; you don’t die from chronic fatigue.

You need not any cardiac component, nor neurological component, nor immune system component, nor any muscle weakness at all, to be diagnosed with CFS as it is defined by the CDC.

  • Someone can have chronic fatigue, along with muscle pain, sleep problems, concentration problems, and joint pain, and get diagnosed with CFS.
  • Someone can have chronic fatigue, along with headaches, tender lymph nodes,  a sore throat, and sickness following exertion (a drastically poor-defined state in and of itself), and they can also get diagnosed with CFS.

What at all do those people have in common but chronic fatigue? Nothing. And what at all do THOSE symptoms have to do with heart failure, opportunistic infections, and brain lesions, which are relative to the disease Myalgic encephalomyelitis? Well, nothing, because the CDC does not study M.E.

Using that example alone should make it clear that, again, if you throw a bunch of poorly-defined sick people into a group and expect to find something specific, it’s not going to be there. So the CDC isn’t going to find anything unless they step it up and make things more particular (heaven forbid they incorporate the Canadian ME/CFS criteria, which require neuro- cardiac- and immunological components for a diagnosis). They really can’t be expected to find anything in their current state.

But of course let’s not forget that when handed positive XMRV samples to use as a control, they couldn’t even find the virus in those. And they have this FUNNY way of ignoring the studies that have found XMRV in other models of CFS, so…

Really, what more can we expect from this organization? At least the FDA and NIH has found it. That’s a start?

[Note: Someone brought it to my attention that this was a study done in Spain that is being PUBLICIZED by the CDC and wasn't actually performed by the CDC themselves. I was thus thinking of retracting my "What else could you expect from them?" statement, since they didn't personally do the study (this time), but because they constantly publicize all the negative studies and leave out all the positive studies, I think that statement still has merit.]

Note: Someone brought it to my attention that this was a study done in Spain that is being PUBLICIZED by the CDC and wasn’t actually performed by the CDC themselves. I was thus thinking of retracting my “What more can we expect from them?” statement, since they didn’t personally do the study (this time), but because they constantly publicize all the negative studies and leave out all the positive studies, I think that statement still has merit.

Article: “XMRV: A Human Retrovirus with Unknown Pathogenic Potential, Not a Lab Contaminate”

The Whittemore Peterson Institute has issued a statement concerning the claims about XMRV simply being a lab contaminate, which I talked about in my entry last week:

http://wpinstitute.org/news/docs/WPI_XMRV_010111.pdf

January 1, 2010

The recent proclamation that “XMRV is not the cause of CFS,” came from an individual who did laboratory experiments to show how PCR experiments can become contaminated. These results have nothing to do with the reality of a disease or the methods used by those who have detected XMRV in the blood and tissue of patients found to be infected. …

Most significantly, the recent Retrovirology publications failed to address the most important pieces of scientific evidence of human infection in the previous XMRV studies, including the fact that XMRV positive patients produce human antibodies to gamma retroviruses, XMRV integrates into human tissues, and infectious virus has been cultured from the blood of hundreds of patients with a diagnosis of Chronic Fatigue Syndrome and M.E. Humans do not make antibody responses to mouse DNA sequences from contaminated lab experiments. The Retrovirology studies only point out that XMRV research cannot be done in a mouse laboratory without extreme caution and should not rely solely on PCR methods.

And this is why I adore this facility: They were aware from the beginning how much various interest groups and the media would try to downplay this virus and its significance. They’ve had to issue at least three statements (that I can think of at the moment) to combat the controversial (and false) statements made by various government and media sources. But they don’t back down. They continue to fight for us, knowing that most of us are too ill to fight back all on our own. And for that, we are all grateful.

If you can donate even $1 to this organization, please do so: They need all the support they can get.

 

a rainbow at night

Article(s): “CFS is not caused by XMRV virus.”

I can’t get over all the controversy that has popped up about the XMRV findings…

It shouldn’t come as a surprise to most that the poor people of the UK are getting the worst of it: Whatever has been in their news concerning anything about XMRV and its link to CFS (though they call all cases ME over there), has just been to explain how most all replication studies HAVEN’T found the virus…

The most recent and most publicized “claim” has been from the British Medical Journal, stating that, and I quote, “Chronic fatigue syndrome is not caused by XMRV virus.” Their evidence for that bold statement? Nothing. Just hypotheses. A group of ~important people~ reviewed some of the negative studies (the ones that didn’t find XMRV in CFS patients), and concluded that whatever organizations did find XMRV in CFS patients, were all due to laboratory contamination. At least up until now we’ve all had the maturity to state that, in spite of what anyone might wish for either side, we don’t know what role XMRV has, despite it being prevalent in a lot of severely ill people. To say that it either is or isn’t the cause of CFS is just bad science. But to state a fact based on hypothesis? That’s a new low.

Which, really, just makes me wonder if they’re TRYING to confirm all the conspiracy theories people write about them?! Why on earth would you say something like, “However, most other research groups, mainly from Europe, reported negative results,” when I can think of six studies that have found the near-exact same rates of XMRV in CFS patients as the original study?! As patient/advocate Heather Goodwin wrote, “Further checking would have revealed that this ‘interpretation’ of four studies is simply an elaborate attempt to debunk the research of a number of laboratories worldwide which have used multiple testing methodologies–not just PCR–to establish the existence and replication of XMRV in humans.” The FDA, the NIH, Spain, New Zealand, London (unpublished), Germany, all have found the virus… Really?!? All of that is contamination?!?

And then what do they do? Oh, well, the XMRV that’s found in cancer, that’s real. (“But the detection of XMRV proviruses in prostate cancer tissue proves it to be a genuine virus…”) Yeah that type is definitely real and we can create a vaccine for it, I bet! Because prostate cancer is serious. But those other positive XMRV studies for CFS people? That HAS to be contamination of the study samples, some mouse-related ingredients (what. the. f###.) must have somehow gotten into things. Every single time. Except during the prostate cancer tests. Because remember, those are real. But that type of virus can’t be real when it comes to either M.E. or CFS…

 

This. This is why I choose to stay in the sidelines. But after this latest stupidity, I had to comment. You just.. you just don’t believe people can say such stupid things, and be so heartless, with all of these people suffering, especially when at any time it could happen to their family members… No. They all waste the government’s resources getting psychologists and psychiatrists to evaluate viruses. All for their own vested interests… When will it end.

Dr. Crippen: The M.E. debate

I have some sort of masochistic interest with this fellow. This was his unbelievable response to the XMRV discovery last year, before he deleted his blog:

The militant wing of the Myalgic Encephalomyelitis (ME) brigade broke out the champagne when a recent article in Science reported that a retrovirus had been found in 67% of ME patients compared to under 4% of the general population. Sadly, the study only involved just over 100 patients and is thus inconclusive.

ME is surrounded by a sad potpourri of cod-science, misunderstanding, prejudice, anger, denial and indifference. Both doctors and patients are to blame. Doctors are victims of their rigid training. If the history, examination and tests do not produce a diagnosis, the doctor’s wiring starts to overheat and there can be only one conclusion. The patient must be mad. “Mad” is a diagnosis. The doctor sighs with relief. The patient cannot win.

Some people with ME are even more blinkered than the medical professionals. Patients with chronic illnesses such as cancer or heart disease sometimes get depressed and are helped by psychiatric treatment. You cannot suggest this to a militant ME sufferer.

“Myalgic encephalomyelitis” literally means “painful muscles” and “inflammation of the lining of brain tissue”. Two scientific concepts irrationally conjoined to provide fertile ground for quacks and malingerers.

Doctors continue to be sceptical, their scepticism buttressed by the many who march under the ME banner but who have nothing wrong with them other than an inability to cope with life.

Some ME patients are mentally ill, I have no doubt. Some ME patients are not mentally ill. Of that I have no doubt either. When you have filtered out the malingerers and the mentally ill – no easy task – you are left with a group of people who are suffering from a chronic illness. Many of them are not receiving the help they so desperately need.

Dr Crippen is the pseudonym for a long-serving GP.

But the “chronic illnessthey are left with couldn’t possibly be the real M.E., could it, doctor?

First off, XMRV was found in CFS patients, not necessarily M.E. patients, though I sincerely hope it becomes applicable to us if it means we get some sort of treatment. And you cannot suggest psychological intervention to us becuase it’s always with the attached “and this will cure you.” Do you ever see someone with diabetes being told their shrink will cure their disease? No.

But yes, I get some kind of masochistic amusement out of watching him state these blasphemous things as if they had any merit, and twist his commentors’ words into why he agrees with them and yet still thinks they are suffering from a mere mental illness. It really is too bad that he closed his blog, isn’t it. (And there is plenty of evidence for the inflammation aspect of M.E., by the way.)

FINALLY!

Red Cross bars chronic fatigue patients from donating blood

American Red Cross Statement on XMRV and Chronic Fatigue Syndrome

“The American Red Cross announced Friday that it is barring people with chronic fatigue syndrome from donating blood to reduce the risk of transmitting a virus that has been associated with the disease.

The virus is known as xenotropic murine leukemia virus-related virus or XMRV. Some studies have found that people with chronic fatigue syndrome are more likely to carry the virus. But it remains far from clear whether the virus causes the disease.

Nevertheless, the Red Cross decided to bar people with the syndrome from donating “in the interest of patient and donor safety,” according to an announcement from the organization.”

It’s about time!

On an unrelated note, today I got an “official” diagnosis of ocular migraines. Thanks for that, Lyme disease… On the plus side, no consistent vasculitis in my eyes, and my vision is the same level of impaired that it’s been since I was.. wow, twelve! (Which is ironic because in the waiting room I had trouble reading the required forms, which is a recent development; how transient these symptoms can be!)

a rainbow at night

A close call

After my last entry on Tuesday night, I woke up in surprisingly little pain. Fret not, though, for there is always something to write about. First off, I’m such a regular at our hospital now that the ultrasound tech (for my thyroid!) knows me by name, the phlebotomist knows me by my voice in the waiting room, and the front desk receptionist knows me on sight; I’m so amused. (“You know you have a chronic illness when…”)

Wednesday was my appointment with an Internist/Infectious disease specialist. He’s primarily an HIV specialist, but I went to see him to get tested for any viruses that could be playing a role in my immune system being so overwhelmed. I know they’re there somewhere, but I’ve only been tested for viruses when I first fell ill with the M.E., and that was just to see which pathogen had caused that fateful infection which triggered the disease. Since then, I haven’t been tested for any viruses except influenza during my Christmas Eve ER visit last year. He only ended up sending me for a bunch of random blood tests, most all of which I’ve already had: things like CPK, ANA, Sed rate, and immune system panel to check on my eosinophilia, which he seems very interested in. (Well, no, he scratched out ESR after I showed him my “5″ value from September.)

The “real visit” as far as I’m concerned isn’t going to be until two weeks from now when he wants to see me again. He apparently wants to rule out other things first (but I’ve already done this; that’s why I ended up at your office!) instead of just straight out testing me for obscure viruses. So right now the only infections he’s testing me for are HIV and syphilis. I’m actually unnerved, because… Okay, I could possibly have XMRV, and I already have Lyme, so my paranoid brain is thinking, “Oh crap what if they cross react and give me a false positive?!?” I mean, if syphilis can cause a false-positive on a Lyme disease test, why couldn’t Lyme disease cause a false-positive on a syphilis test?! And we have no idea what impact XMRV could have on other retrovirus testing, and HIV testing simply uses a western blot and is notoriously bad… What else could happen???

But anyway, when all the other stuff comes back negative like it always does, then we’ll see what he does with me. In the mean time he wants me to see an ophthalmologist because of my retinal migraine attacks. I agree with that, of course. He described me in his very long report (he spent at least an hour with me!) as a young female with autonomic dysfunction, tachycardia, and.. something else I was unable to hear because a huge semi-truck drove by outside. But he was very kind and patient, and seemed to want to figure things out, which I appreciate… I just hope him being an infectious disease specialist doesn’t automatically make him into a “it has to be this way or nothing” kind of doctor. :\

Wednesday in general was really, really bad. I should have known things weren’t going in the best direction when I woke up and needed my oxygen after only an hour. My POTS symptoms were also very exacerbated, which of course greatly contributed to my poor oxygen uptake. From the car I made about a forty foot limp to the hospital entrance before I collapsed in their doorway, being unable to breathe and my leg muscles having failed. They quickly brought me a wheelchair for the remainder of my stay. However, I probably could have avoided the collapse had I outright requested it when I first stood up and knew “this is bad,” due to my legs feeling so severely weak and having sporadic contractions/spasming. I also began having dystonia symptoms in the middle of the day (including in his office), which is unusual, since they usually occur later in the evening…or when my oxygen is low. But by that evening, things had gotten progressively worse. “It” was also happening again, and by “it” I mean when I dehydrate extremely quickly for no apparent reason. (A rant on that in a moment…) As soon as we got home I went into a fight mode, double dosed all of my electrolytes, had upwards of 40-50 ounces of fluid, took my Co Q-10 supplement, and did not move. I even slept for two hours. It seemed to be enough to keep me from another emergency room visit.

I feel.. relieved, that it has passed. I was so nervous about this end of the month, because the past few weeks I’ve had multiple signs that things were aligning for a pretty bad incident to come… And yes, it did happen. The “multiple-infection flare” that tries to bring me down every few months, it seems, when two or more of the things I have within me coincide and my body just can’t handle it… But I won this time! (Around December 24th: Hospital / Around July 24th: Hospital / Novemeber 24th: NO HOSPITAL! :D)

But, right. For years I’ve had a terrible habit of dehydrating at the drop of a hat–I even mentioned this to my doctor that afternoon!–even though I do drink enough fluids and in fact have had to start supplementing every single day with all of my electrolytes (calcium, magnesium, potassium, sodium, etc.). They do help immensely. But I often wake up, having seemingly dehydrated overnight. And I don’t mean, “Hmm, I’m really thirsty, perhaps I should drink more fluids.” I mean, “Uh oh, my muscles aren’t responding normally and I can’t sit up and I can’t breathe and I think I need to go to the hospital again.” This time… I don’t even know. I honestly thought being off of caffeine would prevent these episodes, I really did, because it’s the only factor that I can control, that has been present during these “attacks.” But it’s obvious now that it’s nothing I’m doing. I haven’t had caffeine in two weeks because of the Sporanox, and yet it STILL happened. I mean, yes, there’s a little caffeine in my Fioricet, but I take half a tablet, and that’s the equivalent of drinking three guilps of coffee per day, and I don’t care who you are, that’s not enough to invoke spontaneous, rapid dehydration. Why I don’t get any warnings is beyond my comprehension. I wish I knew that this happened to someone else; I’d feel a lot better just knowing this isn’t just a random quirk of mine that can’t be helped.

*sigh*

a rainbow at night