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Week 21:

The day after I wrote the prior blog I awakened and had no voice. I felt fine. I just couldn’t speak. I went in for my infusion and endured a good deal of teasing about my pathetic attempts to convey messages through gestures. Let’s just say charades has never been a strong suit of mine. The afternoon passed normally, but by the evening I began to feel strange. It took me a few hours to realize I was actually sick. The tiny sinus infection which I had been ignoring for the past couple of weeks turned into a raging monstrosity.  I also managed to pick up a virus which invaded my vocal chords and then shot into my bronchials. I went from cruising along at a perky pace to dead in the water in a few short hours. I was fairly well bedridden all week. I even missed my Friday infusion. I literally couldn’t walk.

What a nasty bug and the sinus infection didn’t help either. I attempted attending church on the 30th and was unable to make it through the entire service. I slept the rest of the afternoon. So much for my second weekend of planned retail therapy. By Halloween I was finally feeling better and I was out of bed. I took my sliver of energy and renewed my driver’s license. It has been at least two years since I was last behind the wheel. We celebrated Halloween in style with a costume party. The dynamic duo of H. and R. stole the talent show spotlight with their Elfie and Galinda costumes punctuated by a spot on performance of ‘Loathing’ from the musical Wicked.

Ampligen Week 22:

This week I have been trying to regain the ground and momentum I gained in week 20. I have made a few shopping trips to the grocery store. I have made it to the library twice. I was able to walk the dogs yesterday. I made it to church today and I stayed through the service.

So, while I am not setting the world on fire, a friend recently reminded me that recovery is not linear, but hopefully has an upward trend. While I would consider my current energy to be in a trough, I can see a definitive upward swing which is and remains very promising.

I am hopeful that this upcoming week will bring me more energy, more adventures and hopefully a repeat performance of ‘Loathing.’

Sophie

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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
 
 

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

Full Disclosure: The author of this blog is PRO AMPLIGEN. The author hopes to see Ampligen approved by the FDA. The author received no monetary gain or remuneration for posting the following. 

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    Several weeks ago I read thorough my blog and was drawn to the copious amounts of side effects I have listed here. I mentally reviewed the prescriptions that I have had to add into my daily routine just to cope with Ampligen. In my pill basket I have everything from sleeping pills, to narcotics, to anti-emetics.

     I started to feel inadequate as a person. I felt that I should be tougher. After all, I am a 20+ year sufferer of ME. I have been through major surgeries, been in a few major accidents and survived some of the most awful tests medical science has devised. Shouldn’t I take the gift and opportunity of Ampligen that I have been given and be more grateful? In the immortal words of Sharona Flemming shouldn’t I just “suck it up?” I felt like I should be the inaugural member of the Ampligen 12-step program. “Hi, my name is Sophie. And I’m struggling with Ampligen.”  

     I felt that I let myself and my family down by not sucking it up more than I already have. It has been so bad at times that I made sure that my estate planning documents were updated, but I didn’t share that with my family or my doctors. Have I made tremendous progress? Yes. Absolutely. Is it worth it? Absolutely. All that didn’t change the fact that I felt like a weakling and a bit of a loser for being so ill with side effects.  

    So I started researching.

  Over the past few weeks I have been able to communicate with many more Ampligen patients. To my utter shock I have heard story after story that were similar in so many ways to my own. Patients with nothing else left to try are struggling valiantly to take their medicine. Patients are on almost every spectrum of pills that pharma can provide to ease their way through Ampligen. Yet, there is no open dialogue between patients.    

   It seems that I share another commonality with other Ampligen patients as well. Many patients are guilty of understating their difficulties with Ampligen to their doctors for fear that they would be removed from the medication. I am guilty of this. I relate my weekly experiences with a smile on my face and a happy lilt to my voice. I never mention the the screams that haunted my family in the small hours of the night as I struggled to bear pain that was simply unbearable.   

    Armed with confirmation from other patients that I am not weak nor am I alone in my side effects I decided to write about about possible side effects. 

I do NOT want people to be discouraged from taking Ampligen. Nor do I think this one tiny blog would bear much sway in the mind of someone who was already considering Ampligen. My hope in writing this piece is simply to get people prepared. Had I not had familial support I would not have been able to stay on Ampligen and make the progress which I have made. I was woefully unprepared. It is my hope that you (whoever you might be) will be ready for anything and everything and not need to be. After all, isn’t it a nice surprise to be overly prepared?

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NOTE: The following is compiled by a non-medical professional. The following is the experience of one patient taking the experimental drug Ampligen (produced by Hemispherx). No outside verification of the following list has taken place. Please note that Hemispherx did not sanction this list nor were they informed it was being written. The non-medical professional blog below is the opinion of one patient in the trial group. The opinion below should not be considered the reality for any other patients currently taking Ampligen,  patients who have taken Ampligen in the past nor should it matter for those considering Ampligen in the future. The author of this blog is a non-medical professional who openly wants Ampligen to be made available through the FDA.

Ampligen Side Effects:

Note: Those symptoms listed in bold type are taken from Hemispherx’s website. You can read their list by visiting here: http://www.hemispherx.net/content/rnd/drug_candidates.htm

Those symptoms in bold italic type are symptoms from Hemispherx that I have experienced.  

The rest  of the symptoms come from me. I’ll add or update this post should any other patients wish to anonymously contribute their side effects. Also, since I am a non-medical professional I didn’t categorize these in any particular order.  

Sore throat, fatigue, sleepiness, anemia, tender lymph nodes, chills, dry mouth, restlessness, dizziness, nerve burning, arrhythmias, nerve pain, nerve twitching, diarrhea, muscle twitching, elevation of kidney function tests, insomnia, migraine, headaches, bronchspasm, unusual or vivid dreams, tachycardia, bradycardia, anorexia, occasional temporary hair loss, increased appetite, changes in food intolerance, muscle weakness, mild flushing reactionmuscle aches, confusion, stiff neck, liver enzyme level elevations, joint pain, back pain, decreased platelets and white blood cell counts, bone pain, flu-like symptoms, itchy, depression, hypotension, aggressive tendencies, rash, anhedonia, urticaria (swelling of the skin), upper respiratory infection / bronchitis,  mouth sores, transient visual disturbances, ringing ears, fluid retention, erythemia, tightness of the chest

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Ultimately I hope that by reading this three things will happen.

1. Patients considering taking Ampligen will be prepared for the worst knowing that it will likely not affect them.

2. Patients will know that side effects are real, that side effects vary from person to person and CAN BE MANAGED so that Ampligen can be a helpful and wonderful experience.

3. Patients will begin to be more open about their struggles so that other patients who have been through Ampligen before can lift and inspire them to continue on the path to better health. We all need each other.  My side effects are finally beginning to loosen their grip on my life. Maybe that is why I was able to write this now.

I guess all that is left to say is “Hi, my name is Sophie and I’m struggling with Ampligen. But it’s getting better.”

Well thank you Hemispherx, it was a long process to get into the AMP 511, but yesterday I finally got my first taste of Ampligen.

No one can ever accuse me of packing lightly. I arrived at the doctor’s office on time and with a backpack containing my laptop, power cord, ear buds, 10 of my favorite movies, snacks, a couple of books and my very squeazable Build-A-Bear (I know – giggle if you must). 

I marched myself into the infusion room and settled into a recliner. My vitals were taken. (My BP was a little high, but hey- I could see the needle coming at me!) In no time at all I was donating two more vials of blood to Hemispherx.

Thereafter followed a quick shift from blood-letting to medicinal infusion. I was surprised that I could feel the Ampligen entering. It felt warm. I only remembered this morning that one of the most common side-effects mentioned on Hemispherx’s paperwork was “mild flushing reaction.” It was not unpleasant – just a surprise. (For anyone that has ever had an MRI with contrast it was a great deal milder than feeling the contrast dye entering.)

I had fleeting sensations of mild dizziness and mild nausea. Since I experience these sensations anyway I was not concerned. The only hitch in the whole process was that the drip rate refused to move at the speed it was set at. The full drip took one and a half hours rather than one hour. So, I watched two movies instead of one.

By the time I got home I was feeling a bit ‘off’. However, since I had just done more activity in one morning than I had done in a week I was not surprised. Two hours post infusion my temperature began to rise and I felt like someone had slipped me Roofie. I went to sleep where I was and was dead to the world for hours. I don’t remember falling asleep. When I woke up that ‘old familiar feeling’ was with me. I had a sore throat, fever, muscle aches, weakness, tiredness and brain fog that would put pea soup to shame. (I’m still unclear about last night’s Covert Affairs episode. Perhaps someone can use small words to explain it to me?)

I assumed that I would have difficulty falling asleep since, apparently, sleep was all I had done from lunch on. I was shocked when I awakened at 7:15 this morning. I don’t remember going to sleep (again). I had weird dreams, but they were not frightening. I woke up craving rotisserie chicken (go figure). I settled for bran cereal and toast. I don’t feel any worse today than I have for the past twenty-one years. And I have hope.

I took the dog for a short, slow walk this morning. While any exercise falls into the very unusual category, it is not unheard of for me to have a few precious minutes of strength first thing in the morning every so often.  For now, I am attributing my ability to both walk the dog and write this blog to being very relieved that yesterday is behind me and the unknown is a little less unknown. That said I am still really tired and brain fogged and I expect my grammatical and spelling capacity has been greatly affected. Thanks for reading this despite the errors!

I expect miracles to occur this year because I have faith in God and in myself. Gandhi said, “Strength does not come from physical capacity, it comes from an indomitable will.”

I can’t wait for Friday.

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.

    Prior to receiving Ampligen I decided that rather than photocopy the ridiculous questionnaire that accompanies the Hemispherx paperwork I would create my own baseline. I am doing this more for myself than for my subscribers. I have a tendency to brush rotten years (or decades as it may be) under the rug. I forget so quickly just how sick I can be that I feel compelled to write and explore just how sick I have become. It seems normal to not leave the house or do laundry or eat, but I suppose most healthy people must do these things often. I hope that one day I can write another entry detailing another baseline – a new baseline of health.  My thanks to the website http://www.name-us.org/ for organizing a symptom list so that I could categorize more easily with brain fog. 

    My symptoms are going to range from 1. Normal function to 10. Unable to do. Five will serve as the midrange meaning either it takes me twice as much effort as a healthy person / my ability to perform the task is half that of a healthy person and/or half the days of the week I am unable to perform the task. “Exercise” by my definition is either 5 minutes of sustained walking at a nominal pace.   

Neurological / Cognitive:

Confusion: 3 Most days of the week. Usually doesn’t get above a 6 or 7.

Informational Processing Speed: 4. After exercise 6 or 7.

Word Retrieval: 2.  After exercise 5 or 6.

Slurred Speech 1. After exercise 3-4. 

Occasional Dyslexia: 1. After exercise 7-8.

Difficulties with Mathematical Problems: 7. After any exertion 9.

Easily Distracted: 2. It takes a severe relapse to move this number up.

Short Term Memory Loss: 5. After any exertion 9.

Attention Deficit 1. After Exercise 4.

Vision Problems (primarily focus) 5. After just standing up 9. (No, I do not drive.)

Brain Fog (The amount of effort required to think): 5. Can go as high as 8-9 depending on exercise and flare cycle.  

 Post-Exertional Malaise and Fatigue:

Flu-like Feeling (sore throat, fever, swollen and or sore lymph nodes, general fatigue, and for me – the tendency to swear little hecks and darns.): 6. Can get as bad as 10 frequently.  

Feeling like Death Warmed-over After Exercise: 10. My family has a rule – Do not speak to, look at or even sit by Sophie if she has tried to exercise. If you are dumb enough to do one of these things, be prepared for curt answers and angry looks. I turn pale, breakout in a cold sweat, have palpitations, throw up about 50% of the time and generally wish I were dead.  

Taking Days to Recover From Exercise: I feel awful and continue to feel worse for about 30 hours post-exercise.

Lack of Endurance: Exercise for me is five minutes of modestly paced walking up and down the hallway of my home. Endurance would be five minutes and 35 seconds. Lack of endurance begins at six minutes.

Autonomic System:

Othostatic Intolerance: 7 normally. I faint more times in a month than I can remember.

Palpitations (w/0 Cardiac Arrhythmias): 8-9. I have palpitations and though my heart often feels as if it is malfunctioning I do not have any arrhythmias.

Breathing Dysregulation: 2. 8-9 if I am exercising.

Shortness of Breath: 4. 7-8 if I am exercising.

Abdominal Cramps: 1. However, when I first came down with ME it was a 10 most days of the week.

Nausea: 9. I could win the nausea Olympics.  

Anorexia (defined here as ability to eat healthy foods): 8. I can work down a pop-tart or homemade bread, but do not pass me a plate of spinach. I will vomit faster than you can run.

Immune Dysfunction:

Tender Lymph Nodes: 9. I can find Lymph Nodes like a pig finds truffles.

Recurrent Sore Throat: 8. I need to buy stock in a popsicle company.

Food Sensitivities: 1-10. This is a hard one to judge. Since everything makes me ill and so does nothing, how do I know which food made me sicker? All I can go on is that before I became ill I had a cast iron stomach and now…well, read the anorexia post above.

Chemical Sensitivities: 2 (non-flare) 9 (during flare).

Allergies: 9. From animals, to pollens to foods and medications – I’ve got it all.

Hyper-Sensitivity to Medications and Side-effects: 10. This is why I am slightly terrified of Ampligen. I am so sensitive to medications, that my doctor is actually afraid to give me anything. My ME doctor has me literally shave medications with a pill cutter to get doses small enough.

Sleep Dysfunction:

Nightmares: 2. Jumps to a 9 when I am in a flare.

Non-restorative Sleep: 9.

Hypersomnia: 4 (non-flare) 9 (flare).

Difficulty in Getting to Sleep: 4 (non-flare) 9 (flare).

Difficulty in Staying Asleep: 2 (non-flare) 9 (flare).

Pain:

My Pain Scale:

10 – Gallbladder Attack

9- Aortic Valve Emptying of Blood

8- Severe Pain Flare

7- Severe Fibro. Flare

6- Broken Foot and Ankle (and walking on said broken appendage)

5- Abdominal Hysterectomy

4,3, 2,1 – who cares?  

 

Generalized Muscle Pain: 3 (non-flare) 9 (flare).

Headaches: 6.

Migraines: 9-10. Several times a month. Sometimes occurring several times in a week. 

Aching / Stabbing Pain: 3(non-flare) 9 (flare).

Concurrent Fibromyalgia: 5 (non-flare) 8 (flare).

Arthralgia w/o Joint Swelling: 7-9. Only occurs during flares.  

Spinal Pain: 4 (non-flare) 9 (flare).

Neuroendocrine:

Temperature Variations: 5

Temperature Intolerance: 9. I like 63 degrees F. with a light wind in daylight and 50 at night with 10% humidity. Even two degrees variation either direction means I can’t do anything outside without risk of passing out in the heat or locking up in the cold.

Night Sweats and/or Night Fevers: 1 (non-flare) 9 (flares).

Worsening of Symptoms with Physical or Emotional Stress: 10.

Inability to Adapt to Overload (During Flare): 10.

Anxiety: 2(non-flare) 8 (flare).

After the huge number of pages of personal, financial and medical data Hemispherx had me fill out the company wanted one more thing. I got a phone call yesterday from them. Hemispherx wanted to know if I had gained or lost more than 5 pounds since I first became ill. If they had bothered to read the patient information they would have known that I was a youngster when I became ill. Unless I was an anomaly, wouldn’t you assume that I had gained more than five pounds in over 20 years?
These are the people who are going to be producing chemicals that are going to go into me. Inspires confidence, huh?

That was a really long two weeks to wait between the initial Ampligen intake and the second set of tests. Part of the time warp was just knowing that no paperwork could be sent off until I had a second set of blood tests. 

My chest x-ray (required by Hemispherx) came back with a suggestion of bronchitis. This isn’t surprising given the fact that most CFS/ME patients tend to develop lung problems the longer they have this lovely disease. I have had more pneumonia and bronchitis episodes than I can remember. I had my first bronchoscopy in my teens. There isn’t an antibiotic in the word that knocks these infections off their permanent perch inside my lungs. I took a weeks worth of ABO. to please Hemispherx. I hope they are pleased anyway.  

Back to reporting on Ampligen intake. My only real complaint is the amount of blood that the nurse took. I would have loved to have been warned that I was going to donate 14 large vials of blood to Hemispherx. I felt like I had been dropped into a version of Twilight where Edward actually eats Bella. (Hmm – note to self – contact Stephanie Meyer and discuss alternate ending to book series.) Nine vials in my left arm stopped bleeding. So – I got stuck in the other arm! Yay! When the ritual bloodletting ended I had two useless arms. Then I was informed that I needed to do more paperwork. Sure! With what arm?!

Since I am anemic anyway I felt like passing out when I left the office. Or possibly throwing up. Or both. I was such a pretty shade of translucent with little beads of cold sweat trickling down my forehead. Do me a favor – if you’re going to do the Ampligen thing be sure to bring lots of water and something sweet to eat to your appointment. Oh yes and one more thing – a driver.

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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