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All of my life I have been unable to take full doses of any medication because I am so utterly sensitive to absolutely everything. For example: if I need some deep sleep 6.25 mg of Benadryl knocks me out for 9 hours. (For those of you keeping track that is 1/4 of a pill for 9 hours of uninterrupted sleep.) Ampligen and I could only coexist at 50 mg.  I believe I have mentioned before how I have all of my doctors trained – they know to look up toddler-sized doses and they pick pills that are choppable. Until now.  Apparently my rheumatologist has found one unyielding component of me that requires maximum doses in a triple combination. My immune system. Who knew? I certainly didn’t. I always thought I was sickly. And I am, but in a different manner than I thought. Even though I catch colds and flus, (and everything else I come into contact with) and though I have fevers and a sore throat daily  my immune system is not weak. Just misguided. It is guiding the best and the biggest immune missiles it can at me. Why worry about a cold when there are so many other problems? Perhaps my immune system has some repressed component of self-loathing.  To make a long story short if the strength of The Avengers team could be combined, quantified and then transferred into an immune system – that immune system would be mine.

While there has been a few cases that I have read about where ME/CFS has been vastly helped by Methotrexate I have not found this to be the case with me. So far I have seen good improvement in pain reduction, inflammation reduction and in energy boost, but since my current baseline is somewhere between “shoot me now” and “don’t waste a bullet I’ll be dead by morning” a good improvement has only moved me to the category of struggling which – to quote one of my favorite films – is “like trying only without succeeding.” I usually have a pain reduction / energy boost which lasts about 3 days after the MTX injection.

To try to move me further along the path to health Mr. Rheumy has now added in 20 mg of Arava daily. Arava (as I have recently learned through Dr. Google) is an immunomodulatory drug with anti-inflammatory properties. If this triple combination of Plaquenil, Methotrexate and Arava fails to slow down the war within me – then biologics will be the next step.  Until then – immune system Avengers Assemble!  Or, rather – disperse! And bring me some Shawarma!

 

Sophie

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**A quick note about the title of this blog. While I no longer meet the official criteria for defining CFS/ME because my fatigue can be explained by another factor other than ME – I believe that there is likely some overlap of symptoms, features and possibly the etiology of autoimmune and neuroimmune diseases that is not yet fully understood. Therefore, I will continue to seek help from my ME doctor as well as continued treatments for ME for the foreseeable future. After all, I still feel awful no matter what ICD-9 codes are attached to my name.**

As many of you are aware I have been following the trail of a possible rheumatic illness for the past 21 years. I have been more especially on the hunt since exiting the Ampligen 511 Trial earlier this year when my end of study labs revealed a positive ANA and also several other abnormal autoantibodies. After a plethora of lab draws and subsequent conformational labs I can now say that I do indeed have an autoimmune disease. Probably. Welcome to the wonderful world of autoimmune diseases.

My appointment with the new rheumatologist was a smashing success. The waiting room time was minimal (under 30 minutes) and he spent two hours and 15 minutes with me discussing my entire medical history. We covered every scrap of information that was faxed over by my ME doctor and all the interlinked computerized records of the past decade. He asked every question I was hoping he would ask; he addressed every question I threw at him with competence and proficiency; he ordered every additional test I was hoping for; and as icing on the proverbial cake he was really super-duper nice. Add to all that the fact that we have mutual friends and it was a simply dreamy appointment. I hoped and prayed that the appointment would go well, but that appointment was above and beyond anything I was hoping for.

The new rheumatologist has given me a new temporary label of UCTD (Undifferentiated Connective Tissue Disease). I expect to remain under the UCTD umbrella for at least the next month. The new rheumatologist explained yesterday he needed an ICD-9 code that would allow him to run additional tests without having to get prior authorizations for every little detail. So for the next month I will again have all the prior lab tests drawn (fifth time). I will also undergo a series of really fun-sounding exams to determine if I have sustained any organ damage. If there is organ damage I can expect further testing to follow to figure out the extent thereof. My next several weeks have just become booked solid. Once all the tests are in the new rheumatologist (hereafter refered to as Mr. Rheumy because that name is infinitely cooler than ‘the new rheumatologist’) will give me a definitive diagnosis, prognosis etc.

Mr. Rheumy did feel strongly that I do have a real (ie: not drug induced) autoimmune disease. Due to this he has put me on Plaquenil (HydroxyChloroQuine / HCQ), Celebrex and Medrol. (I politely refused the Medrol since steroids and I do not mix. He explained that he never forces anyone to take steroids unless the steroids are needed to save the organs. That works for me.) I am seeing Mr. Rheumy next on July 3rd.

In the meantime I literally have places to go and technicians to see.

It is strange to relate the title of this blog ‘Saying Goodbye to CFS’ made me sad. I have been under the umbrella of the disease-of-a-thousand-names since I was seven. When I speak with fellow CFS/ME sufferers there is a camaraderie, an understanding and an ease that I have come to rely on.

When you say “brain fog,” I understand you.

When I say, “I am so tired!” you know what I mean.

The hardest part for me (so far – give me time and I am sure I can come up with something harder to deal with) has been wondering how long have I been harboring an autoimmune disease? And more to the point, I suppose, what would life have been like if I had found it at age 8? Or 12? Or 17? Or, or, or? Now it may be that this autoimmune disease was smouldering in the background and it was just waiting to spring to life. However, if that is the case, why do I have the same symptoms and problems that I did back in 1989? Why do I feel exactly the same as I did when I was eight? Maybe CFS/ME really is autoimmune. Who knows? I sure don’t.

So far the only consolation to a life lost I have been able to come up with is this –  and I ask you to read the following with an open mind.

Don’t stop looking once you have an answer. Keep looking for new treatments and new avenues of disease. I fit the ICC criteria until yesterday when I suddenly didn’t anymore. If one person can find a road to better health because they took a second look or a third look or a 50th look at their disease then what I have lived through will be worth it.

 

Why, you may ask, am I asking you to take another look at your disease when I know you have fought for so long to get a diagnosis? Why when you have in your possession that truly precious ICD-9 code that means you are not crazy, or an attention seeker or (my personal favorite) a drug-seeker? Why do I ask you to reevaluate the fact that you have a neuroimmune illness that is debilitating even on the best of days? Because at 4:00 am this morning I woke up and wondered “what if?”

I have had the best medical care available in the USA. The majority of this care over the past two decades has been private pay, with top doctors in every specialty.  I have had more tests run than just about everyone I know. I have had the ANA screening and ANA panel so often I am surprised that the lab technicians don’t recognize my blood on sight. I have had spinal taps, MRIs, CTs, pulmonary workups, cardiology work ups, neurology work ups, endocrinology workups, gastroenterology workups and every other specialty you can think of a number of times over the past two decades. Added to this is the fact that the team of doctors who have been looking after me genuinely care about what happens to me because they good doctors. They are good people. And they want me to get better. If the best specialists in the country couldn’t find an autoimmune disease in me for 21 years, isn’t it just possible that I am not the only one?

Take a second look at your diagnosis. If not for yourself, then for me.

Sophie

From Ampligen to Autoimmune

Due to the over-due nature of this particular blog posting the length might pose somewhat of an issue for some readers. I thought it best to break it up by dividing it into sections.

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My last Ampligen infusion was Feb. 3rd. As you may remember I stopped because of constant bronchitis / pneumonia and transient brief blindness. (Mostly the brief episodes of blindness.) When I stopped the Ampligen I was sent to an ophthalmologist who concluded that my eyes were anatomically fine, but the risk of blindness associated with the continuation of Ampligen was too great. When I stopped Ampligen I was enjoying a happy existence of about a 60 -70 KPS which was a far cry from the 40 where I started.

About two weeks after stopping Ampligen an old, familiar feeling began to creep into my hands and wrists and I cried because I knew what was coming next…

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A brief recap –

I was diagnosed with CFS in 1989. Every test, every everything came back ‘normal’ and I fit the CFS criteria exactly. When the new ICC was published I fit the definition for ME. In 2003 (prior to becoming my current ME doctor’s patient) I had this epic amount of pain hit me. It just seemed to come out of nowhere. The hard part was that it hit everywhere all at once. While being exhausted is bad enough dumping head to toe agony on top of the exhaustion was almost too much to bear. Yet again, my PCP ran every test one could think of. I spent weeks collecting test results and dispersing cash as I went in for umpteenth repeats of ANA, ANA Panel, CBC, ESR, CRP, Spinal Tap (my second one by this point in time), MRI (my third – or was it my fourth?) and a CT (only my first). The results? Drum roll please… a big, fat NOTHING showed up.  Everything was normal and negative and perfect. Except for the small fact that I was in terrible pain and I looked perfectly fine. At last it was concluded that it was likely Fibromyalgia that had suddenly and ferociously developed (based on the positive pressure points test and a lack of anything else to find.) I was first put on Vioxx (which I promptly threw up) and then Celebrex and an SSRI. Celebrex was like a heaven-sent blessing. After eight weeks on Celebrex I started having serious stomach problems and so I went off of it. The severe pain did not return that year although I had lingering muscle aches. I also quit the SSRI as I was not depressed, just in pain. Every year after this initial incident I have had two or three (or sometimes more) episodes of tremendous pain.

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In 2005 I caught a small cold. Just after getting over the cold I started having insane, fiery pain in my wrist and it slowly spread to every joint in my body. The joints began swelling terribly. Everything was beyond painful – my feet, hands, knees, hips, shoulders, elbows got so bad that I had to lie in bed with pillows supporting every joint. I screamed if anyone touched me. My doctors were understandably quite worried and so they sent me out for another battery of tests including (but not limited to) CBC, ANA, a full ANA panel, an ESR, a CRP, MRI (number ?), CT (number three?) and other things. Everything returned negative and normal except for my ESR (also known as a sedimentation rate) which came back at 87 (it should have been under 20). With nothing except a sed. rate to go on I was treated with rotating narcotics and NSAIDs. The NSAIDs helped a little, but by then my stomach was so sensitized to life in general that I could take very little of them. The pain pills just knocked me out and didn’t touch the pain. Since nothing could be determined it was finally decided that I had developed Post-Viral Poly Arthritis. This disease is characterized by intense pain and swelling in the joints after a normal virus. After 12 weeks of intense pain I developed horrible pleurisy and nearly died. I was in and out of the ER 10 times and Instacare 20 times in September and October of 2005. I had continuing pain in my chest so I had my umpteenth chest x-ray. When nothing significant turned up on the x-ray, yet the chest pain remained, I got my 3rd Holter monitor followed by my first King of Hearts (month long heart monitoring test). Everything returned ‘normal.’ (I am sensing a pattern here…)

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No matter how well I had been doing prior to the pain every time I would go through this particular pattern of sickness it would be immediately followed by a crushing fatigue. Some years the fatigue would leave me housebound, other years the fatigue was not quite so ghastly.

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Many more tests were conducted over the years. Everything from my heart, to my lungs, to my brain was scanned, poked, prodded and ruled “normal.” Narcotics did not touch the pain (never mind the fact that I hate narcotics with a passion) and I’ve since developed an actual allergy to NSAIDs. Steroids helped the pain, but the side effects were (and continue to be) just too awful unless I am ready to be hospitalized with fluid in my lungs. These recurrent episodes of pain usually followed a virus. Sometimes there was pain with no swelling, but as the years dragged on swelling became more and more apparent. Every time I had a flare one or both of my doctors would order an ANA, an ANA panel, an ESR and a CRP and anything else that crossed their minds. Though the sed. rate would consistently (albeit briefly) spike and the CRP climb a bit above normal – nothing else was ever visible.

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When I got off Ampligen I felt pretty dang good. The ‘whatever’ it was hadn’t hit me all winter (although Ampligen itself produced such hellish side effects for the first 5 months I may not have noticed if it did). I was so pleased because I thought “YAY! Ampligen killed off whatever it was!”

Two weeks after stopping the Ampligen I began to get that ‘old familiar feeling’ in my wrists. Within another week I was in full-blown pain flare. There is no way to treat the pain and swelling with my allergy to NSAIDs, my hatred of narcotics and my aversion to the emotional **** of steroids except to wait it out. Waiting it out has been the custom since 2004. Fresh in the feeling of disappointment and realizing that whatever ‘IT’ was ‘IT’ was back – even after all the Ampligen – I didn’t bother telling anyone at theME Dr.’s office or my PCP’s office that another flare had hit. Why would I bother? The emotional drain of Ampligen coupled with having my doctors say yet again, “everything is normal” was more than I could take. So I sucked it up and moved on. “Ampligen may not have helped the pain” I thought, “but at least I have some energy.” I had hoped that because of the Ampligen I would be protected from the exhaustion that usually followed the pain. One week into full flare mode and three and a half weeks after my last Ampligen infusion I had my end of study labs drawn.

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Imagine my utter shock when I had my appointment with the ME Doctor and found out that my Hemispherx blood work had returned and my ANA was low-titer positive, and I had anti-dsDNA – a strong indicator for Lupus. I sat stunned in the office thinking to myself – YOU IDIOT. YOU HAD A BUTTERFLY RASH LAST WEEK. WHY DIDN’T YOU TAKE A PICTURE?! I know why I didn’t. I thought I had some sort of weird acne outbreak. Who the heck would think to take a picture of their acne? What would one do with such a thing? Use it as a Facebook profile picture? I think not.

My doctor spoke with Hemispherx’s doctors (Dr. Strayer and Dr. Carter). They were as shocked at my blood as my Doctor was. (Remember that Hemispherx does baseline labs to screen for ANA, etc. several times during the course of treatment.) Hemispherx had never had a patient develop an autoimmune disease after taking Ampligen – not even a drug-induced autoimmune disease. Patients are always thoroughly screened. Hemispherx requested a second set of labs which I gladly sent off to them March 27th. Meanwhile the doctor was unsure if this was / is drug-induced Lupus or a false positive or heaven knows what.

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After leaving the Doctor’s appointment I got over my initial shock and started studying up on Lupus lab work ups and DILE (Drug Induced Lupus Erythematosus). In my research zeal I read like a crazy person. Though Interferon has occasionally produced DILE, the hallmarks of DILE are that the patient has no symptoms of Lupus prior to taking the suspected drug, the patient’s symptoms resolve after the drug is stopped, a presence of anti-histone antibodies and the absence of anti-dsDNA. It is also fairly rare in DILE to have a butterfly rash. Obviously, I was the exact opposite. I had symptoms before Ampligen. The symptoms returned after the drug was stopped. I did not have anti-histone antibodies, but I did have plenty of anti-dsDNA and I had a pretty rash.

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After this episode I developed severe pleurisy. Barely able to maintain adequate pulmonary function (even nebulizing every three hours), my pulmonologist bucked tradition and put me on Medrol for 20 days and ABO etc. After the 20 day course of prednisolone I was mentally and emotionally ready to leap in front of a bus or a train – whichever came first. The pain and pleurisy were greatly diminished by this course of steroids. Just two days after stopping Medrol I saw my ME doctor again and a third set of labs was ordered for when I “felt like I was in pain again, but wait a few weeks because the Medrol will have put everything back into hiding.”

Well, heck I am always in pain. I was freaking out so much (thank you, prednisone, you make my life more interesting than necessary) wondering “how much pain is enough pain to show anything?” and “Will two weeks be long enough to wait?” that my family said “let’s just go have it drawn and then if everything comes out negative and normal and perfect then you can blame it on the Medrol. If that happens then we’ll wait a few more weeks and do it again. However, if things come out positive, then you’ll know.”

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I had that blood draw April 13th and I got the results Monday April 16th. As soon as the ME Doctor’s office saw the third set of positive labs I got a phone call. The Doctor said I likely have MCTD or Mixed Connective Tissue Disorder – an autoimmune disease mixture of Lupus, Scleroderma and Polymyositis. My ANA was positive (by direct test method), my sedimentation rate was elevated, my CRP was really elevated, and this time I also tested positive for anti-RNP and positive for SCL-70. Combining the third set of tests done locally and the Hemispherx labs it was evident that I needed to see a rheumatologist, but no one in this area takes my current insurance. After lots of prayer and a whole lot of frustration a dear friend was able to connect me with a highly recommended rheumatologist who agreed to see me as a favor to this friend. I will be seeing this doctor on the 6th of June. I hope you all understand why I was unable to write blog entries prior to this time.

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All of that brings us to today.

I am freaked out and sorta-hopeful and just a whole bunch of things at once. I seem to swing back and forth between panic and joy all the while living in severe pain. In the meantime I am trying to get my body as pulled together as I can. Quite a few of the gains I made on Ampligen are not currently with me. I can still get out of the house and do a bit of local driving. I do not know if this relapse is a permanent relapse or just stemming from the fact that I am in utter physical agony. I am trying to maintain a positive attitude in and amongst all this.
I really don’t know what is going on or what is going to happen to me. While I do not know what the rheumatologist will possibly diagnose me with nor do I know how to handle my inability to tolerate traditional autoimmune therapies (like steroids and NSAIDs) I do know that I was lead to take Ampligen for some reason. It may not have been the reason I originally thought it would be, but it is a darn good reason nonetheless. I will keep you all posted on what happens.

Sophie

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