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).

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