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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

–Ampligen Week #20 —

A note on flu-season and Ampligen:

After much discussion with my doctor, I decided that receiving my usual small dose of a flu shot would be beneficial to me. I have had flu shots every year of my life. With my newfound activity levels my chances of exposure are now fairly high. I took a 1/3 dose of the shot – which is standard procedure for me and has been so for about the past five years. I reacted much as I did last year and the year before. Since everything went well I will have a second 1/3 dose sometime in the new-year (also standard procedure for me). The rest of the family got their usual yearly dosing (more to protect me than for their own immunity). So far, half of them have had a fairly strong reaction to the shot and half have had almost no reaction. So it remains to be seen (in our family) whether this year will be a violent flu year or not. You should always check with your physician to determine what vaccinations are right for you and your family.  

 This week has been very busy. I am crossing my fingers that busy is my new normal. After Tuesday’s infusion I decided to take it easy. I made a batch of cookies because apparently, though I do not consider baking to be a personal strength, my family really has missed my cookies.

 Wednesday I took the dogs for a moderately brisk 20 minute walk and then got 1/3 of a dose of a flu shot. Thought my arm was a bit stiff I still managed a rousing game of fetch for 20 minutes after dinner. Thursday I did two loads of laundry and a bit of fall cleaning projects. Even after my shot and two loads of laundry I still managed a short walk (15 minutes) with the dogs and had company over.  

  My doctor suggested that I skip Friday’s infusion since I would be assaulting my body with a flu shot. I awakened Friday morning with a fixed determination to sort out my closet. Not an easy task – especially since this particular chore has been put off for several years. I should explain that my entire wardrobe consists of pajamas, old jeans, sweats and t-shirts. Or should I say consisted of. Yes, after cleaning out my closet I actually went for some retail therapy for the first time in three or four years. My goodness, how styles have changed since last I set foot in a mall! I hit three stores in two malls. After all this I still had energy to walk the dogs for 20 minutes and stop off at the grocery store. Then I came home and made dinner. Saturday was almost a carbon copy of Friday except it was shoes I chased after. I left my heart in the mall inside a box with a pair of ivory stilettos. After a decade of house slippers and flats I have not got the muscle (or balance!) to step out in five inch heels yet.

 Lest I ruin my streak of energy I took quite a lot of time to rest on Sunday. I walked the dogs for 25 minutes, but nothing other than that besides a long nap and a peaceful Sunday.

 So far, today has consisted of a trip to the library and walking the dogs. However, there were a few things that I left at the mall which I just might have to go back for.

 All in all it has been a fun week. I don’t remember the last time I went out just for the fun of it. Maybe, just maybe I have really turned the corner.

 Wishing you all the same –

 

Sophie

I am amazed that it has been over four months since my first infusion. Time seems to have both stopped and raced forward. Newton said, “Absolute, true, and mathematical time, of itself, and from its own nature, flows equably, without relation to anything external.” Obviously, Newton never took Ampligen.
 
Over the past two weeks I have been able to manage my side effects better. Some of the side effects seem to be lessening in intensity (except for that blasted nausea). I still have a sore throat, fatigue, sleepiness, anemia, tender lymph nodes, chills, dry mouth, restlessness, dizziness, muscle twitches, migraines, headaches, unusual and or vivid dreams, changes in food intolerances, muscle weakness, muscle aches, joint pain, back pain, flu-like symptoms,  mouth sores, transient visual disturbances and the occasional bout of ringing in the ears.
 
My general current holding pattern is thus: active for a few short hours on Sunday and Monday. Get flattened faster than a sumo wrestler plopped on Jupiter by Ampligen Tuesday and Wednesday. Start to crawl out of the sickness by Thursday. Get flattened by ‘Ampligen gravity’ (again) on Friday and Saturday. Rinse and repeat.  I have been able to do a few more small things around the house on “sick” days. I managed a bit of cooking. I did a load of laundry. I made it through 1/2 of a church service.
 
I suppose only hindsight will prove whether the next two months will be described as tempus fugit or tempus retrocedit. In the meantime, I have some apple trees to sit under.  
  
 
 Sophie
 
 

Sometimes you have the feeling that because you are doing something that is incredibly hard, stressful and more important than anything you have yet attempted in life, that somehow in someway life will allow you to focus simply on your target. That feeling is usually a false flag.

Like a pirate ship sailing under a banner of peace – life sails up beside you and overwhelms your defenses. If you survive the attack you are left to wonder why the heck you didn’t see the approach. 

That was what the last week has been like for me. The combination of physical and emotional stress of the past week overwhelmed the benefits I had been steadily gaining. I have been knocked right back into feeling like I am in my first week of Ampligen. To be honest, even if I was a healthy, well person I would probably be feeling like this. I hope I never have to live through another week like this one ever, ever again.

I managed to pick up a few new side effects as well. It is possible that my body just couldn’t cope with the stress. I may actually be sick, but who knows? When you feel this crappy it is difficult to differentiate between causes and effects.

I seem to have developed a rather bad case of pleurisy. Between trying to breathe as lightly as possible and struggling to find a comfortable position for my ribcage I could just scream. I can’t take my pain medications or my Claritin. The pain medications (except for Tylenol) depress my breathing further. The Claritin dries my mucosal secretions out (I know… TMI) making it harder to breathe too. Hypoxic-Blue is just not my color.

Between the pain, the usual infusion symptoms, the new breathing problems and the events of the week I feel on the verge of total physical, emotional and mental collapse.

Fortunately I don’t wave white flags.  

Sophie

 

Twelve weeks down…many, many more to go.  To compare where I was three months ago to what I am up to now click here: https://theglassmountain.wordpress.com/2011/05/22/my-baseline-and-me-part-2/

Sophie’s Typical Week: 08/28/11

Sunday:

I am up by 7:30 am. I still only make it to church about 50% of the time.  (This is mainly due to the fact that I cannot bear going to church looking like a slob. Since I will only go to church showered, hair done and looking pink and primped, it may be a while before the percentage of Sunday church attendance rises.)  I return home and take a one hour rest. I will do a couple hours of computer work (emails, blog etc.) and then help with either dinner or dessert preparation about 70% of the time. I take the dogs out for a 30-50 minute play session (fetch, obedience, agility etc.). I will watch some tv and then work on an art project or sometimes speak to a friend until about 10:00 pm. Then it is off to bed.

Monday:

I wake up around 7:30 am and watch the news, do a bit of reading and then a few minutes of exercise. The exercise is usually 5-7 minutes of walking at about two miles / hour. I usually manage to repeat this exercise twice more in the day. I try to get an hour or so of work in on the computer before lunch. I have managed to make myself lunch about once per week. After lunch I take a one hour rest. Following that I go out into the world. I make one or two stops totalling about one and a half hours. I come home do some more things around the house (very basic things, like dusting a room or brushing a dog). After that it is dinner, tv and bed.

Tuesday:

I  am up at 7:30 am and I usually try to work in a brief walk before leaving for my infusion. With my infusion time and drive time I usually do not arrive back home until mid-afternoon by which time I am more than ready for a nap. Out of the past three weeks, 50% of the time I have made a stop at a store on my way home from and infusion. I am usually wiped out for the rest of Tuesday. I get to bed by 10:30 pm and sleep fairly well (excepting the nightmares, of course.)

Wednesday:

Wednesday mornings are a total wash-out. By Wednesday afternoon I am usually able to check email from the couch (as opposed to the bed) and by Wednesday evening I am usually just a touch below my new baseline.

Thursday:

Is much like Monday, except about 70% of the time I end up with energy to do something additional such as baking a batch of cookies or perhaps something more ambitious like making soup. I have been able to have a few friends over and because of the infusion schedule I usually receive company on Thursdays. While I am quite tired after visiting, I am able to do it even though I have already been out of the house earlier in the day.  

Friday:

A copy of Tuesday.

Saturday:

Is a copy of Thursday (minus the company).

 

To the casual observer my week may appear very similar to what I was experiencing three months ago, but I can feel a difference and see a difference. Having been virtually housebound for the past several months and suddenly being able to go out two to three times a week seems miraculous to me. Going out is the biggest change, but what has made the most difference so far is the little things. Just staying alive seems easier. (Except for infusion related living – that is an entirely different story.)  

I no longer just sit on the couch and watch endless hours of television. I can now sit in a regular chair for a couple of hours at a time. I have been able to consistently play with my dogs. I can now walk through a store for 40 minutes without thinking “I’m gonna die!” I can read again (and more importantly understand what I have read and remember it.) I am able to write this blog more easily. There seem to be a hundred little things that are just easier to accomplish. I am not blazing through life, but at least I can literally stand up and you have to be able stand before you can run.

Sophie

As I’m sure you are aware the latest meeting of CFSAC (Chronic Fatigue Syndrome Advisory committee) just wrapped up in D.C. three days ago. While much of the conference can be quite a drain on energy it is well worth listening to. The public comment section is always my favorite.

Check out the full program here: http://www.hhs.gov/advcomcfs/meetings/index.html

Mindy Kitei also has a YouTube channel which features many highlights from current and past meetings. Her YouTube channel can be seen here: http://www.youtube.com/user/thx1138mindlock

Happy viewing! Sophie

I think we all know by now that our so-called “paperless” society is anything but. However, when I checked my email and saw the long-awaited Ampligen paperwork I was still taken aback. Seven pages from Hemispherx alone! Why didn’t they just print one sheet of paper and say something such as: “This drug may kill you or worse and no matter what you say or do or who you hire you will not win a lawsuit against us. We will also be charging you an exorbitant amount for the privilege of possibly dying a horrible death so don’t whine – or we’ll deny you entry into our study. Also we want blood and tests and x-rays and anything else we can think of that will be exhausting for you (since you have extra energy anyway).” 

All kidding aside, I think that had that bimbo not spilled her coffee into her lap while at a drive-thru we would not be subjected to such litigious warnings on every tag, box and package insert in the world. 

I get it. I am doing something risky and the trade-off could be big either way. That said I am an exhausted person. Couldn’t someone else initial all those pages?

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