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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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–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
 
 

Many years ago a young woman accompanied a small wagon train as it travelled north. The travellers were about 40 miles from their destination when an early winter blizzard unleashed its full fury on the travellers.  What started as a clear pathway with well-worn wagon wheel grooves swiftly changed into snow drifts over four feet high.  The young woman kept pushing forward through the ever-increasing drifts. As she moved forward to her horror she realized that she could no longer hear the sound of the horses and mules straining in their harnesses above the wind. Unable to see or hear her fellow travellers she continued moving forward in the hopes that by moving forward she would not fall prey to hypothermia. She soon became exhausted by the effort of swimming through snow. Alone, freezing and afraid she paused and uttered a heartfelt prayer for deliverance.

Suddenly a man on a large horse appeared and scooped her up into the saddle. He gave the horse his head and the three carefully made their way to the wagons which had circled to wait out the storm. The man delivered the woman to the travellers and then disappeared back into the blizzard.

I have been fortunate enough in my lifetime to witness a blizzard in the exact location where this young woman became lost. The snow swirled and stung my face. Ice formed on my woolen gloves. I wore polar-fleece and a snow-suit and I was still cold. It is hard to imagine surviving in an ankle-length dress and thin leather shoes. Yet, she did.

What I find most impressive about this story is its parallel to modern life. How often I have started on a path that was well-worn and relatively clear only to find that just a short distance from my destination a seemingly impenetrable obstruction blocks my path, hides the trail and stops my progress. I am tempted to lie down in my proverbial snow drift and let hypothermia of the soul freeze my progress. 

While several times in the past week I have felt the urge to drop off the Ampligen I have persisted in the hopes that by moving forward I will end up where I need to be. I was rewarded with a token day of energy yesterday. I was able to walk the dogs for 15 minutes and shop (albeit briefly) in three stores. I am not dead today nor am I in increased pain. I have stayed at the 50 mg level infused over one hour this past week. I am still optimistic, but I am also learning to be a little more celebratory over the small victories. Making my lunch, visiting with a friend and being able to walk a little more may not be the same thing as running a marathon, but for now I’ll take what I can get. Now, if only the nausea would lighten up…

Sophie

Nobody likes to read a story or see a film where there is no adventure, no intrigue and where nothing really ever happens. The trouble is that when it comes to our own adventures and intrigues the temptation is to want them to be tame and convenient. We are human, therefore we yearn for the proverbial ‘happily ever after’ right after the ‘once upon a time.’ It seems to be all too easy to forget that life, as in stories, has a middle section. This middle bit, while interesting to a reader, is usually very unpleasant for the character going through it. So it is with our own personal stories. The “middle bit” is usually very unpleasant. 

This past week was a series of those “middle bit” days. If I were a character in a novel it would have been an interesting read. Living through it was just plain horrid. I have been more sick for the past week than I have ever been. In 21+ years of being sick, I have never been as violently ill as I was the past week. What I don’t know is why. (My best guess is that the stress of the prior week in addition to the cumulative effect of Ampligen over the past 3 months produced a perfect storm.) All my lymph nodes went crazier on Monday night than ever before. From my head to my knees lumps of varying sizes popped up. The most frightening thing that happened though is that my tonsils and lymph nodes of my head and neck swelled up so much that I felt like I was trying to suck air into my lungs through a straw. My fever shot up to 102 and hovered there day after day. The pain would have been unbearable had I not been terrified of dying from lack of oxygen.

I skipped the Tuesday infusion and had my dose reduced to 50 mg on Friday. I upped the infusion time to one hour. So far, I have been less sick. My family honestly thought I was going to die this past week. The family has now set up a schedule whereby I am never alone. They have also instituted an emergency plan of what to do in case my airway disappears again. Having medical professionals in the family can certainly be a boon to survival. 

Despite all these things that have happened to me I still believe in Ampligen. I want it to be approved and available. Getting my body to cooperate with Ampligen is the real twist in this story.    

While I am less sure of how everything is going to work out, I am more sure that everything will work out just as it is supposed to. In the meantime, I am counting my blessings and focusing on the last sentence in the last chapter of my personal story book – “and she lived happily ever after.”    

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

I am making progress. I hit two major milestones thanks to Ampligen this week. The first is that I managed to go out to more than one store in a single trip. I made it through three stores in one day! I was out for two hours. I did come home and feel less than stellar, but I did it. With a nap and some Tylenol I was able to have a normal evening without too much increased pain. I was even able to play fetch with the dogs after dinner.

 The other milestone was I was able to make it to church. I didn’t stay for the entire service, but it was the first time I have been in a very long time.  I came home tired, but after a nap and some lunch I have been able to get to work on this blog entry. Pulitzer worthy it is not, but hopefully it is at least coherent!

The bone pain has reduced in severity and duration. I usually have bone pain for about 24 hours after every infusion. 

Nausea is still my constant companion. Occasionally his buddy, the Technicolor yawn, will spend a few hours with me.  

My hair follicles still burn as if each individual hair is on fire, but only for about 24 hours after each infusion (as opposed to constantly when I began the Ampligen). The chemical burning feeling seems to be directly related to Ampligen infusions and hair loss. The more a section of my head burns, the more hair will fall out from that section of scalp.

The main side effect I have had to learn to cope with this week is dreams. What happens when your brain has been wrapped in a velvet cloak of fog for more than two decades? What dreams begin to awaken when the cloak begins to be lifted? And more importantly what the heck can I do about it? 

I know that I have mentioned vivid dreams before in connection with Ampligen, but I never knew dreams could perfectly mimic life right down to the smells and tastes. Dreams are supposed to be images, sounds, sensations, emotions and thoughts experienced while sleeping, but this is almost like living another life. And that life is horrible and frightening beyond imagination.  

Let me make perfectly clear that I do not enjoy violent or scary movies, tv shows or books. If the ending of a book or movie can’t be summed up by the tagline “and they all lived happily ever after,” I usually refuse to have anything to do with it. I haven’t had a tragic or scary real life either. Yet, I have awakened the whole household almost every night this week. I have awakened them with sobs of wrenching despair and piercing screams emanating from sheer terror. Why did I dream things that broke my heart beyond repair? How in the world did I end up running for my life, screaming in terror and soaked in cold sweat? I am not safe whenever I shut my eyes. Dreams stalk my nights and my naps.    

As an added bonus it is nearly impossible to awaken me from one of these new kinds of dreams. When I do awaken, either by being shaken awake by a family member or screaming myself awake I cannot shake off the dreams. I fall asleep and go right back into dreaming where I left off. It is awful to be unable to escape.   

So far I have not found anything to relieve or change the dreams. I can only hope and pray the intensity of these dreams will stop soon. If not for my sake, then for the sake of the other poor, sleepless souls that have to live with me.  

Any suggestions for those of us trapped in Nightmare Land?

Sophie

Have you ever played the telephone game? What begins as a simple statement winds its way through many pairs of ears until the original statement is unrecognizable. For example – “You are severely anemic because of the Ampligen and you’ll be taken off of the drug if the anemia doesn’t get better” actually started out as – “You’re becoming mildly anemic. Eat more red meat.” It is a good lesson for me to remember that dire news isn’t always dire news.

I had quite a banner Ampligen week. Wednesday I woke up feeling something that I had forgotten about. I felt rested. I felt like I had actually slept. I ended up being able to take the in-house vacuum apart and haul it down to the vacuum repair shop. I didn’t crash on Thursday. I did the opposite. I reassembled the vacuum, vacuumed the entire house, scrubbed both bathrooms (including tubs and showers), did two loads of laundry, got every drain in the house running faster, did six minutes of brisk walking, played fetch with the dogs for 30 minutes outside in the heat, took a steamy hot shower to get off the sweat and dog slobber (and I didn’t feel woozy!), made a few phone calls, read half a book, painted a water-color, took a one hour nap and then had three guests over for three hours. I went to bed at 10:30 and I was up at 6:40 feeling rested and raring to go. Friday I exercised the dogs prior to the infusion, got infused, came home and sent out some emails, made a few more phone calls and finished my book. I was busy all morning and into the afternoon. I didn’t end up crashing until Friday evening at about 7:00 pm. Almost three full days of energy is unheard of for me!

The crash caused more pain, but it was tolerable with Tylenol. I did feel very dizzy and light-headed and had a major increase in nausea. I did not sleep well thanks to the dizziness and nausea. The major crash symptoms that were manifested were anxiety and tears. It was odd. I cried my eyes out for hours without feeling really sad. The only thing I have to compare it to is when a small child has been allowed to stay up to late and sobs for lack of sleep. I felt anxious without really being able to figure out why.

 I wasn’t really tired on Saturday like I would be in a normal crash. I was sleepy since I had not slept for more than 4 or so hours on Friday night, but I wasn’t dead tired like I expected to be. I slept well on Saturday night and I feel back to baseline or even a bit above baseline today (Sunday). This is just more proof that Ampligen is working for me. While my house is usually clean enough to eat off the floors that is thanks to the dedication of my family. I have not been able to contribute to the cleaning process for the past year or so. To have done all this and still feel this good is beyond exciting.       

I stayed at the 100 mg level for both infusions this week. I had what I would describe as an increase in flu-like symptoms plus a little bone pain tossed in for good measure. The Claritin still works wonders. At the end of week 9 I can affirm that though the process of the Ampligen is more physically, emotionally and spiritually challenging than anything I have ever done – it does work.

I know that there are many people who would like to take Ampligen and cannot due to health, location and  /or costs. It is my hope that this drug will be approved by the FDA so that anyone who wants to try Ampligen may try Ampligen. In the meantime, if you live close to an infusion site you might consider an Ampligen trial.

 Some insurances will cover the office visits and infusion costs and a half dose of Ampligen is 7,200.00 per year. That works out to 600.00 per month. Not cheap by any account, but many patients spend twice that on various OTC medications, acupuncture, antivirals and other treatments. I think the statement “shoot for the moon; even if you fall short you’ll still land in the stars” can be applied here.   

Sophie

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

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