Disclaimer:

The following blog was written while I was in a state of extreme pain and mental agitation.  Rather than wait for the symptoms to subside I have chosen to write while in an especially aggravated state so I could show the true effects of dealing with Ampligen – both the excellent and the terrible.

 I had a massive internal debate this morning about whether I was going to edit the symptoms I have been feeling or just toss caution to the wind and say what I really feel. The debate stemmed from the desire to be both brutally honest while not scaring anyone away from trying Ampligen. I also was worried that someone from the FDA might read this and that it might adversely affect their opinion of this drug. However, I decided by adding the following three caveats I could be both honest and not frighten people who may read this.

1.)  Please understand that my doctor who sees many ME/CFS patients and patients with MCS (Multiple Chemical Sensitivity) is shocked by my level of drug sensitivity. So my experience is likely related to the intensity to which I respond to all medications. I therefore, consider myself an extreme example and my experiences should not be taken as a measurement for any patients other than myself.

2.) I have spent the better part of two decades learning to hear even the faintest messages my body is sending me. I have found that by so doing I can influence my physiology to make me more comfortable. Some examples of this would be my ability to raise and lower my blood pressure by will and my ability to mentally block pain. (Yes, I rock.) I am telling you this because when you are this in tune with your body it can be a curse when things feel even a little wrong inside. So, what one person may feel is a general sense of “uugh” and move on I have refined into feeling acutely. Along with this comes the intense desire to gain back as much physical equilibrium as possible as soon as possible. This is an added stress.

3.) I strongly dislike it when people decide things for me. Therefore, I try not to decide things for others. I am going to write what I feel because I am giving the world the benefit of the doubt that anyone who is reading this is capable of making their own informed decisions about their own medical care and treatment. I also expect that my experience is but one person’s truth in larger picture. I do not consider myself to be of such import that this one small blog could or would change the opinions of the properly educated.      

Begin Ampligen Treatment #5:

Since last I wrote I have been through the mother of all migraines.  I considered using an ice-pick to dull the pain, but cooler heads prevailed. After a dose of narcotics and a full 100mg of Imitrex and a full dose of Tylenol I felt less like dying and more like sobbing. Since I couldn’t risk the pain returning I suffered in silence. This was the day before my first full 400 mg dose of Ampligen.

Infusion Day: 

The next person who tells me that “Ampligen’s most common side effects are increased flu-like symptoms” is going to get punched in the face. Since I used to handle very large draft horses and I am now running on pure adrenaline I would imagine I would probably break several bones in their face – and it would be worth it.

I am normally such a loving, gentle, happy soul. So why do I want the world to suffer? One word – cytokines.

From the article: The Neurobiology of Aggression and Rage: Role of Cytokines

“…important relationship linking cytokines, immunity and aggressive behavior. Clinical reports describe increasing levels of hostility, anger, and irritability in patients who receive cytokine immunotherapy…” Here is a link to the full article: http://www.ncbi.nlm.nih.gov/pubmed/16938427

To further connect the dots allow me to interject this statement by Dr. Natelson: “…[Ampligen]… can produce CFS-like symptoms because it itself resembles a cytokine…” Facing and Fighting Fatigue: a Practical Approach by Benjamin H. Natelson, M.D.  pg., 179

I suggest anyone who is going to go for Ampligen should be well informed about the cytokine aggression connection. Their families also need to be educated lest they think their loved ones are now clinically insane. I think the Hulk wasn’t irradiated with gamma rays. He simply had a cytokine problem. That may also be true of Dr. Jekyl.

The other reason “increased flu-like symptoms” makes me think of four-letter words is it is the equivalent of saying someone has ‘chronic fatigue.’ It completely trivializes the actual suffering of the soul behind the disease.

Here are the actual symptoms:

Fatigue

Nausea & Vomiting

Pain

Hair Loss

Anemia

Infection

Mouth, Gum and Throat Problems

Diarrhea and Constipation

Nerve and Muscle Effects

Effects on Skin and Nails

Kidney and Bladder Effects

Flu-Like Symptoms

Fluid Retention

Oh! Whoops! Did I accidentally copy the list of chemotherapy side effects from this

 http://www.medicinenet.com/script/main/art.asp?articlekey=21716 

website instead? How could I have been so dumb? I only feel these things daily anyway and they only increased when you gave me Ampligen! So in no way should I compare my treatments to chemotherapy because even though I have the symptoms, it isn’t the same and I’m not suffering as much? Thank you for enlightening me. I was so concerned that I would have to experience these things.

Sarcasm? Yes. Deserved? Also, yes. In all honesty, the only thing on that list that hasn’t hit me full force is hair loss. However with the stress of the past two and a half weeks more than the usual amount of long, blond mane has been falling out.

To that symptom list I would add the following (all of which began about 2 hours post-infusion and are still occurring):

lymph node swelling:

Right wrist lump measuring: 1.25″ long x 1″ wide x .25″ height

Chest lump measuring: 6″ long x 3.5″ wide x 1.5″ high 

Neck circumference increase 1.5″

Other swollen areas – behind both knees and inside both elbows  

More symptoms:

Spinal pain / stiff neck / ringing ears / stiff muscles / dizziness / generalized weakness / joint pain / lymph node pain / bone pain / nerve pain / decreased visual acuity / red throat / fever / chills / dry mouth / restlessness / acne and a snippy attitude.  

Okay, ready for the positive? I know I am. Prayer. My instinct is telling me this is all going to work out and that this stuff is really going to work for me. I believe in a God that answers prayers and I feel this is the right way to go. So I’m going to forge ahead and try my best to “no toil nor labor fear, but with joy wend [my] way.”

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