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Shortly after writing the prior post (Ampligen Weeks 33 and 34) I began to feel fairly ill. I had developed another sinus infection which quickly spread to my bronchials. So it was back on antibiotics (including a few shots of Rocephin) and a break from Ampligen. After two full courses of antibiotics I did improve in my sinusitis and had some movement towards better health in my bronchitis. This sinus infection / bronchial combination marked my 15th course of antibiotics since starting Ampligen.
 
I took two infusions off and then returned to infusing.      
 
I have some news about me and Ampligen.  I am no longer going to be doing Ampligen. (I know, I’m shocked too.) I had planned on taking Ampligen for at least one year – maybe more if finances and a return to health congruently flowed together. Sadly, this is not to be. 
 
I have two main issues: the first is the utter inability to shake off sinus infections, bronchitis, pneumonia and generalized bacterial infections. The second more serious issue is eye problems. 
 
 I started having eye pain when I first started taking Ampligen, but it was infrequent and the pain didn’t last long (a few seconds maximum). It was not a migraine – it was located only in the eye itself and it would sometimes hit in the left eye and sometimes hit in the right eye. Having had ocular migraines in the past I could definitely tell the difference.
 
At about month 6 it got so that the pain was happening more frequently and sometimes my vision would get blurry when the pain hit. At the time I made a conscious choice. I would sacrifice my vision if I could regain energy and a life. After all, what is the difference between seeing 4 walls and a ceiling versus nothing, but being out in the world?
 
Then about 3 weeks ago the pain started coming more frequently and I went temporarily blind in my eye for about 10 seconds. When the pain stopped my vision returned to normal. Three weeks ago after ending my antibiotic treatments I returned from my short Ampligen holiday and had an infusion. The pain – which was searing – and blindness (a total loss of vision) started to hit me repeatedly a couple of hours after the infusion. The pain and blindness occurred for short 10-15 seconds bursts, but it came again and again and again the afternoon of the infusion and continued throughout the night into the next day. The pain was nearly unbearable. Though I might be willing to lose my sight the prospects of living with this degree of eye pain possibly on a permanent basis would inhibit any benefit of energy gained.     
 
I made an appointment with an ophthalmologist who was recommended by a doctor friend of the family. With my Ampligen doctor’s express wishes I stopped Ampligen while I waited to see the ophthalmologist. I finally saw the ophthalmologist and much to my relief  my eyes are anatomically fine. However, given that Ampligen is an Interferon and there is a rare, but well documented, connection between Interferons and vision problems (including blindness), the recommendation from all the doctors involved was a strong suggestion to discontinue the Ampligen treatments immediately and permanently.
 
The ophthalmologist thought the transitory pain and blindness I was describing was probably a spasm of the eye which temporarily reduced the blood flow and thus oxygen to my retina. It was also suggested that I return in three months to the office to make sure that my eyes are still okay. 
 
There was also a  referral given to me to see a specialist to have a neuro-ocular exam should the pain and blindness return. (About 48 hours after the last infusion the eye pain and blindness ceased and has not returned.)   
 
To make a long story short – I filed for early termination with Hemispherx. 
 
(Please allow me a moment here to say that Hemispherx was extremely helpful during this process. They have also been exceptionally easy to work with for which I am immensely grateful.)
 
I have taken enough antibiotics that I now have a problem with systemic candidiasis. So, despite having another sinus infection coupled with the early stages of bronchitis I can’t take anymore antibiotics until my candida levels are knocked down. I will do a more in-depth analysis of my Ampligen treatment when I can see straight  (figuratively speaking).   
 
For now let me just say in summary that I am glad that I took the Ampligen and I am happy with the progress I made. That may sound strange to some, but I went from being just about bedridden and housebound about 98% of the time to almost a 70 on the KPS. That is a huge leap in just under 8 months. For however long this state lasts it was worth the agony, the disease and even the near constant state of bronchitis to get here.  I would make the same decision to take Ampligen if I had to do it all over again.
 
I have a firm belief that God did not drag me to this point in my life for His own amusement nor did He do so only to let me fall into a state of complete waste. I don’t know what is next for me, but I have a firm faith in the power of divinity to work miracles in ways that are not bent to the understanding of mortals. I still firmly believe that I will get better somehow, in someway in the future. Whether that bright future of health will arrive next week or next year or sometime else it still will arrive. The end of my Ampligen is not the end of my hope. 
 
I will continue to keep this blog going. I would like to track my after-Ampligen experiences. Plus I enjoy writing and this format is far easier to edit than the traditional pen and paper routine.
 
Thank you to all those who have read this blog and especially to those of you who have reached out with support and compassion. While  I didn’t expect to have my journey end in this way I am equally surprised to have found so many new friends with whom I hope to remain life-long friends.
 
New beginnings and a continuance of hope are before me.
 
Sophronia Church   
 
      
 
 
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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
 
 

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

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

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.”

As I’m sure you are aware the latest meeting of CFSAC (Chronic Fatigue Syndrome Advisory committee) just wrapped up in D.C. three days ago. While much of the conference can be quite a drain on energy it is well worth listening to. The public comment section is always my favorite.

Check out the full program here: http://www.hhs.gov/advcomcfs/meetings/index.html

Mindy Kitei also has a YouTube channel which features many highlights from current and past meetings. Her YouTube channel can be seen here: http://www.youtube.com/user/thx1138mindlock

Happy viewing! Sophie

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.

   The actual name of my disease (according to the World Health Organization) is Chronic Fatigue Immune Dysfunction Syndrome / Myalgic Encephalomyelitis (ME). Most people call it ME or me/cfs for short. The W.H.O. classifies ME as “a disease of the central nervous system.” Many people are diagnosed with Chronic Fatigue Syndrome (ME) who do not actually have it. There are people who are diagnosed with Chronic Fatigue (ME) and get better a few years later and who lead fairly normal lives while they are “ill.” Normal is defined here as being able to go to work or school like a healthy person would and is able to take care of personal and home needs. These people most likely had a viral infection or some other problem and not ME.    

    People who have ME have the equivalent physical impairments of someone with end-stage AIDS combined with chemotherapy, according to Dr. Loveless, a leading ME / AIDS researcher. Another doctor, Dr. Klimas, has often said that if she had to choose between having AIDS and ME she would choose AIDS. Why? Because AIDS patients have medications, they live fairly normal lives and they live better lives than people who have ME.

    You should know that ME is not (I repeat) NOT contagious. In order to contract ME you must have a genetic code with certain flawed bio-markers, and then be exposed to a triggering virus (like Epstein-Barr or possibly XMRV). Simply stated – I cannot make you sick.  

    The following are some of the many symptoms of ME:

  • Severe fatigue (that is not helped by any amount of rest)
  • Extreme muscle and joint pain (which is not helped by medication)
  • Vision loss
  • Heart problems – arrhythmias, fainting, and heart disease
  • Chronic cough with bronchitis and pneumonia fairly often
  • Swollen & painful lymph nodes
  • Severe headaches and migraines (occurring most often in women)
  • Sore throat
  • Fever (usually for most days of the week)  

None of the aforementioned symptoms are ever helped by rest or medication. There are a fair number of people who claim that such and such helped them. While I am happy for them it is, again, unlikely that they ever had ME to begin with. There are no treatments for ME. There is currently no cure and no FDA approved treatments.

3% of ME patients will die from this disease. Cancer, however is the leading cause of death for ME patients. Many ME patients do not live past the age of 55. The bottom line is ME patients don’t live long or well.

            I have been given the opportunity to participate in a clinical trial of the first medication that is seeking FDA approval for the treatment of ME. Ampligen is administered twice a week via an IV for at least one year. The side effects vary from person to person. A few people have little or no side-effects while most others have exhibited symptoms comparable to Chemotherapy.

I would like to thank you all for your support through this next year as I seek treatment for my ME. Please keep me in your thoughts and prayers as I commence this difficult and dangerous journey.

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