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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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Treatments #15 and #16:

“The best laid plans often go awry” and “the road to h*** is paved with good intentions.” These two sayings should have run though my mind on Tuesday morning. They didn’t. So what happens when common sense won’t be heeded? Pop media bites you in the backside – as in ‘Ampligen IV – The Ampligen Strikes Back.’

While I had originally intended to only increase my Ampligen dosage by 25 mg – 50 mg I was told that could not be done. I had to go from 100 mg to 200 mg. (I have since been corrected and that is not the case.) However, at the time I didn’t want to make a fuss. So, like an idiot I said “okay, let’s double it!” It was also time for the week eight blood draw.

Thereafter followed a rather scary evening. My temperature which started at a pre-infusion 96.7 degrees farenheit began to rise. Two hours post infusion I was at 98.9 and still climbing. Four hours post infusion I hit 100.  Another hour and my fever rose to 102. My fever continued to rise from there, but the new pressing problem was my inability to consume adequate liquids since my throat and tonsils were so sore I could not swallow. My family was prepared to take me to the ER, but I was too ill to go. All I could do was sit and shake like a giant chihuahua and swallow as much Tylenol as I could safely take. To my great relief my temperature began to decline after midnight.

Wednesday brought a whole basket of delights. I witnessed the return of mind-blowing bone pain, muscle pain, joint pain, lymph node swelling (and pain), spine and neck pain and more hair loss than usual. This was in addition to my usual nausea and food avoidance.

Thursday was a bit more survivable than Wednesday.

Friday I reported my lack of success with the jump to 200 mg. I then promptly dropped back to my 100 mg level. My brief excursion to the 200 mg level made my body ready to attack even 100 mg of Ampligen. I had more pain (bone pain especially) and more swollen lymph nodes than I had previously had at the 100 mg level. 

Several hours after my Friday infusion I got a call from the Doctor’s office. My doctor explained that (luck me) I was experiencing another rare side effect of Ampligen. I have become extremely anemic. I now get to subject my nauseous self to lots of red meat and lots of iron supplements or risk losing the Ampligen because of the anemia.   

The saga (like Star Wars) continues. Will someone please notify Harrison Ford?

Sophie

Sophie’s Typical Week

Sunday: I awaken at 8:30 am. Then I eat breakfast. I watch HGTV and News. I gear myself up for attending a one hour church service. (I make it to church about 50% of the time.) I return home from church and eat lunch. Then I check my email and visit YouTube. I take a  three-hour nap. I watch more tv. I eat dinner. I watch tv. I get to bed at 9:30pm. I am asleep between 10pm and 11pm.

Monday:  I awaken later (9:00 am) on Mondays thanks to the exhaustion caused by attending church. I eat breakfast and watch Good Morning America, The Today Show and The Early Show. Shortly after breakfast it is nap time. I sleep until lunch. Sometimes I don’t sleep, I just lie there and look at the walls and ceiling. Then I get up and eat lunch. After lunch I watch some tv and then take a two-hour nap. I watch more tv. I eat dinner. I watch more tv. I am in bed by 10:30 pm and asleep (usually) by 11:00 pm.

Tuesday: I eat breakfast and watch Good Morning America, The Today Show and The Early Show. I read for 15 minutes. I check my email and visit YouTube. I Google random things. I walk for 5 minutes and strive to do an extra 30 seconds. I take a half hour rest. Then I get up and eat lunch. After lunch I watch some tv and then take a two-hour nap. I watch more tv. I eat dinner. I watch more tv. I am in bed by 10:30 pm and asleep (usually) by 11:00 pm.

Wednesday: I eat breakfast and watch Good Morning America, The Today Show and The Early Show. I read for 15 minutes. I check my email and visit YouTube. I Google random things. I walk for 5 minutes and strive to do an extra 30 seconds. I take a half hour rest. Then I get up and eat lunch. After lunch I watch some tv and then take a two-hour nap. I watch more tv. I eat dinner. I watch more tv. I am in bed by 10:30 pm and asleep (usually) by 11:00 pm.

Thursday: I eat breakfast and watch Good Morning America, The Today Show and The Early Show. I read for 15 minutes. I check my email and visit YouTube. I Google random things. I walk for 5 minutes and strive to do an extra 30 seconds. I take a half hour rest. Then I get up and eat lunch. After lunch I watch some tv and then take a two-hour nap. I watch more tv. I eat dinner. My three best friends come over to watch a movie. It is the highlight of my week. I am in bed by 10:30 pm and asleep (usually) by 11:00 pm.

Friday: I eat breakfast and watch Good Morning America, The Today Show and The Early Show. I read for 15 minutes. I check my email and visit YouTube. I Google random things. I walk for 5 minutes and strive to do an extra 30 seconds. I take a half hour rest. Then I get up and eat lunch. After lunch I watch some tv and then take a two-hour nap. I watch more tv. I eat dinner. I watch more tv. I am in bed by 10:30 pm and asleep (usually) by 11:00 pm.

Saturday: I eat breakfast. I read for 15 minutes. I check my email and visit YouTube. I Google random things. I rest  for an hour or two in preparation for a cold shower. I take a cold shower (I can’t wait for the day I can hop into a hot shower again and not faint). I have my hair brushed for me – I cannot do it myself. I eat lunch. After lunch I take a two-hour nap. I watch more tv. I eat dinner. I watch more tv. I am in bed by 10:30 pm and asleep (usually) by 11:00 pm.

The Top 10 Things I Miss Doing:

10. Being able to stand up and sing in the church choir.

9. Styling my hair.

8. Hot, daily showers.

7. Baking.

6. Cooking.

5. Rough-housing with my dogs.

4. Exercising and really working up a sweat.

3. Doing things with friends and family.

2. Being outside the house.

1. Walking for more than a few minutes at a time.

I don’t fix any meals for myself aside from pouring a bowl of cereal. I don’t do laundry. I am lucky to get in one cold shower per week. I can’t comb my hair. I don’t drive. I leave the house once a week if I’m lucky. I never clean anything (which is hard for a neat-nick like me). I talk on the phone once every few weeks – and even that is hard. I can’t sit comfortably in upright chairs. I need to recline on the sofa or love seat. Every couple of weeks I have just enough gumption to thwap out a few lines about me and ME and post it here.  I hope and pray with everything in my soul that Ampligen will give me a little more freedom. And in my heart of hearts I pray for miracles.

Ever since I was a small child I have loved the fairy tale The Black Bull of Norway. In the story a widow woman has three daughters. As each daughter comes of age she requests of her mother to bake a cake for the fortune-teller. The two eldest daughters are thrilled when the fortune-teller leads them to handsome, wealthy princes. Certain of her good fortune, the third daughter takes a cake to the fortune-teller who tells the youngest that her fate lies with a great, black bull. The bull carries the girl into a valley made of glass. The bull then tells her that he must go and fight Satan. If the sky turns red it means that Satan has won the battle, but if it turns blue it means the bull has won. The bull tells her she must remain perfectly still or he will never be able to find her again.  Having conveyed this warning the bull leaves the glass valley to fight Satan. Blue and red push and tear across the sky for many hours until at last the sky turns a brilliant blue. The bull has won. In her joy, the girl momentarily forgets the bull’s warning and moves one foot ever so slightly. Realizing her mistake the girl begins to weep. She then becomes the one to quest for the bull which she loves.  To her utter despair, though, she cannot leave the valley. The valley is ringed by mountains made of glass and she cannot climb them. She becomes the servant of a blacksmith who promises to make her shoes of iron if she serves him for seven years. It is at this point I will leave off telling the rest of the adventure in this story and continue with another kind of adventure.

I have been (and am currently in) a glass valley of my own. I have been in this place since I was seven. I am now 27. My Glass Mountain is called Myalgic Encephalomyelitis (ME). Classified by the WHO as a ‘disease of the central nervous system’ ME is more commonly refered to in the USA as Chronic Fatigue Syndrome – a name which I find ridiculous. I am neither chronically tired nor am I surrounded by buff men in camouflage (although I wouldn’t mind being the latter). I am instead impaired with almost the same intensity of someone who has end-stage AIDS coupled with chemotherapy treatments. In my next post I will delve deeper into what ME is and what ME is not.

The reason I am starting this blog is that I want to keep friends and family apprised of my condition. I am fortunate because very soon I will be able to participate in a trial of Ampligen. Ampligen is the first drug seeking FDA approval for the treatment of ME. I know that this medication is controversial and expensive. I know many, many people want to try this medication and because of cost or current living location cannot. I am hoping that by contributing my body to be tested that this medication may indeed be approved by the FDA. Or, conversely, if I react badly then everyone will know that too. I have been ‘serving the blacksmith’ now for 20 years. I am desperate to live. One way or another I will climb my Glass Mountain and I will finally, finally be free.

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