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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

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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

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. 

~~~~~~~~   

    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?

~~~~~~~~~~~ 

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

 ~~~~~~

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.

    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.

If only the original forms were the only ones I had to worry about. The paperwork I have to complete every eight weeks is enough to make me quit the trial before I am even accepted. Pages and pages of functionality questions, and psych. eval. questions.

I think my ‘favorite’ question was “do the thoughts of others bother you?”  Are you serious? Why can’t my doctor just vouch for me that I am not some raving lunatic?

Anyway, I promised myself that I would write more about the actual process of the Ampligen intake as an informational source for anyone who might read this. 

The appointment lasted over 2 hours. There was extensive questioning about my entire medical history (even though this ME/CFS doctor has known me for 6 years) . There were pages of questions. About half asked me to score ADLs (Activities of Daily Living) the other half were psychological in nature. I will have to repeat these every eight weeks.

There was a full physical exam and full neurological exam.

There was a blood draw, a urine test, a chest x-ray and an EKG.

I was so tired when I got home. I hope Ampligen is a miracle drug or the process of getting it is going to literally kill me.

My next step is a second intake appointment in two weeks. Another blood panel and who knows what else awaits me.

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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