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A brief recap – I saw Mr. Rheumatologist in June. Since then I have seen him three times. My blood (ever unwilling to be easy to deal with) returned to normal (excepting my ESR and CRP) after my first visit with Mr. Rheumy. Mr. Rheumy still believes that there is something amiss with my autoimmune system. He just isn’t sure what yet. There are so many possibilities and overlaps on the table still I won’t even bother to list them. Fortunately, he is a good doctor and a kind one. So he decided to treat the symptoms while we wait on the differential diagnosis.

Which brings me to the title of this blog Methotrexate versus Ampligen: A comparison (of sorts). I have been on MTX for about a month now. Mr. Rheumy started me off on a good-sized dose. (Well, that statement may or may not be true – I was using Dr. Google for comparison. I am on a 15mg starting dose.) He’ll be raising the dose at our next visit in August. And then likely raise it again in September. From there we may add in biologic etc.

Though Ampligen and MTX are in different classes and operate in different manners there are some similarities worth noting. Keep in mind that this is only my personal experience.

The first thing I noticed about MTX were the side effects. It was like Ampligen-Lite.

So far the top side effects are as follows:

Sore throat, fatigue, sleepiness, tender lymph nodes, chills, dry mouth, restlessness, dizziness,headaches, unusual or vivid dreams, occasional temporary hair loss, muscle weakness, muscle aches, confusion, joint pain, back pain, flu-like symptoms, malaise, upper respiratory infection / bronchitis, mouth sores, transient visual disturbances, ringing ears.

If this list seems familiar it is because I cut and pasted the Ampligen side effects from a prior blog post.

MTX knocks me for a loop for about 72 hours. I dose myself on Tuesday (another coincidence entangled with Ampligen) and by Friday I am finally feeling more like I did prior to dosing myself.

With only one month under my belt it is a little too early to say how I will do in the long run with MTX. However, the joint pain has lessened with every week and every dose that has passed. Whether that is due to the current joint pain flare ending on its own or the MTX remains to be seen.

I’ll keep you posted.

Sophie

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Today I am one day shy of my six-month Ampligen free anniversary. So, how do I feel? Well, I feel okay. Some things are FAR, FAR better after the Ampligen than they have ever been before Ampligen. Some things are about the same. Nothing is worse than it was before the Ampligen. To be short in writing I’ll break it down by paragraph.

The Better:

These things improved while I was on Ampligen and have continued to remain better even after six months of being off.

Improved recovery time: I can still crash and burn easily, but I recover after two days rather than several weeks. The vast difference in recovery time is probably my favorite after Ampligen effect.

Improved sleep: I can count on a good, deep night’s sleep nearly every night. Most nights I get about 7 hours. I find that I am actually functioning better on the 7 hours I get now than the 10 – 12 hours (plus naps) I was getting before.

Improved Pain: I have less muscle pain when I do overdo it on activities than I did before taking Ampligen.

Improved Energy: While I am nowhere near my highest energy point when I was on Ampligen it is worth noting that before Ampligen I was mostly housebound. I spent the majority of the time in my home either lying down or resting on the couch. Now, six-months after Ampligen I go out about 3 – 5 times a week and get to one or sometimes two stops. Once a week I am able to get out and head off to the farm and enjoy some time with the horses. I have not been able to do that (prior to Ampligen) for about 3 years.

The Same:

I still wear out quickly and exercise is the fastest way for me to be reminded that I am not a well person.

I pay for any activity. I still get a sore throat along with fever, fatigue and muscle pain.

Onto the question I get asked the most – was it worth it to take Ampligen?

Let me put it this way. After 8 months on Ampligen and six months off I recover faster from activity. I am in (and enjoy being in) less pain on a consistent basis. I sleep every night. I leave my home consistently. It was absolutely worth it for me to take Ampligen.

Sophie

From Ampligen to Autoimmune

Due to the over-due nature of this particular blog posting the length might pose somewhat of an issue for some readers. I thought it best to break it up by dividing it into sections.

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My last Ampligen infusion was Feb. 3rd. As you may remember I stopped because of constant bronchitis / pneumonia and transient brief blindness. (Mostly the brief episodes of blindness.) When I stopped the Ampligen I was sent to an ophthalmologist who concluded that my eyes were anatomically fine, but the risk of blindness associated with the continuation of Ampligen was too great. When I stopped Ampligen I was enjoying a happy existence of about a 60 -70 KPS which was a far cry from the 40 where I started.

About two weeks after stopping Ampligen an old, familiar feeling began to creep into my hands and wrists and I cried because I knew what was coming next…

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A brief recap –

I was diagnosed with CFS in 1989. Every test, every everything came back ‘normal’ and I fit the CFS criteria exactly. When the new ICC was published I fit the definition for ME. In 2003 (prior to becoming my current ME doctor’s patient) I had this epic amount of pain hit me. It just seemed to come out of nowhere. The hard part was that it hit everywhere all at once. While being exhausted is bad enough dumping head to toe agony on top of the exhaustion was almost too much to bear. Yet again, my PCP ran every test one could think of. I spent weeks collecting test results and dispersing cash as I went in for umpteenth repeats of ANA, ANA Panel, CBC, ESR, CRP, Spinal Tap (my second one by this point in time), MRI (my third – or was it my fourth?) and a CT (only my first). The results? Drum roll please… a big, fat NOTHING showed up.  Everything was normal and negative and perfect. Except for the small fact that I was in terrible pain and I looked perfectly fine. At last it was concluded that it was likely Fibromyalgia that had suddenly and ferociously developed (based on the positive pressure points test and a lack of anything else to find.) I was first put on Vioxx (which I promptly threw up) and then Celebrex and an SSRI. Celebrex was like a heaven-sent blessing. After eight weeks on Celebrex I started having serious stomach problems and so I went off of it. The severe pain did not return that year although I had lingering muscle aches. I also quit the SSRI as I was not depressed, just in pain. Every year after this initial incident I have had two or three (or sometimes more) episodes of tremendous pain.

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In 2005 I caught a small cold. Just after getting over the cold I started having insane, fiery pain in my wrist and it slowly spread to every joint in my body. The joints began swelling terribly. Everything was beyond painful – my feet, hands, knees, hips, shoulders, elbows got so bad that I had to lie in bed with pillows supporting every joint. I screamed if anyone touched me. My doctors were understandably quite worried and so they sent me out for another battery of tests including (but not limited to) CBC, ANA, a full ANA panel, an ESR, a CRP, MRI (number ?), CT (number three?) and other things. Everything returned negative and normal except for my ESR (also known as a sedimentation rate) which came back at 87 (it should have been under 20). With nothing except a sed. rate to go on I was treated with rotating narcotics and NSAIDs. The NSAIDs helped a little, but by then my stomach was so sensitized to life in general that I could take very little of them. The pain pills just knocked me out and didn’t touch the pain. Since nothing could be determined it was finally decided that I had developed Post-Viral Poly Arthritis. This disease is characterized by intense pain and swelling in the joints after a normal virus. After 12 weeks of intense pain I developed horrible pleurisy and nearly died. I was in and out of the ER 10 times and Instacare 20 times in September and October of 2005. I had continuing pain in my chest so I had my umpteenth chest x-ray. When nothing significant turned up on the x-ray, yet the chest pain remained, I got my 3rd Holter monitor followed by my first King of Hearts (month long heart monitoring test). Everything returned ‘normal.’ (I am sensing a pattern here…)

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No matter how well I had been doing prior to the pain every time I would go through this particular pattern of sickness it would be immediately followed by a crushing fatigue. Some years the fatigue would leave me housebound, other years the fatigue was not quite so ghastly.

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Many more tests were conducted over the years. Everything from my heart, to my lungs, to my brain was scanned, poked, prodded and ruled “normal.” Narcotics did not touch the pain (never mind the fact that I hate narcotics with a passion) and I’ve since developed an actual allergy to NSAIDs. Steroids helped the pain, but the side effects were (and continue to be) just too awful unless I am ready to be hospitalized with fluid in my lungs. These recurrent episodes of pain usually followed a virus. Sometimes there was pain with no swelling, but as the years dragged on swelling became more and more apparent. Every time I had a flare one or both of my doctors would order an ANA, an ANA panel, an ESR and a CRP and anything else that crossed their minds. Though the sed. rate would consistently (albeit briefly) spike and the CRP climb a bit above normal – nothing else was ever visible.

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When I got off Ampligen I felt pretty dang good. The ‘whatever’ it was hadn’t hit me all winter (although Ampligen itself produced such hellish side effects for the first 5 months I may not have noticed if it did). I was so pleased because I thought “YAY! Ampligen killed off whatever it was!”

Two weeks after stopping the Ampligen I began to get that ‘old familiar feeling’ in my wrists. Within another week I was in full-blown pain flare. There is no way to treat the pain and swelling with my allergy to NSAIDs, my hatred of narcotics and my aversion to the emotional **** of steroids except to wait it out. Waiting it out has been the custom since 2004. Fresh in the feeling of disappointment and realizing that whatever ‘IT’ was ‘IT’ was back – even after all the Ampligen – I didn’t bother telling anyone at theME Dr.’s office or my PCP’s office that another flare had hit. Why would I bother? The emotional drain of Ampligen coupled with having my doctors say yet again, “everything is normal” was more than I could take. So I sucked it up and moved on. “Ampligen may not have helped the pain” I thought, “but at least I have some energy.” I had hoped that because of the Ampligen I would be protected from the exhaustion that usually followed the pain. One week into full flare mode and three and a half weeks after my last Ampligen infusion I had my end of study labs drawn.

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Imagine my utter shock when I had my appointment with the ME Doctor and found out that my Hemispherx blood work had returned and my ANA was low-titer positive, and I had anti-dsDNA – a strong indicator for Lupus. I sat stunned in the office thinking to myself – YOU IDIOT. YOU HAD A BUTTERFLY RASH LAST WEEK. WHY DIDN’T YOU TAKE A PICTURE?! I know why I didn’t. I thought I had some sort of weird acne outbreak. Who the heck would think to take a picture of their acne? What would one do with such a thing? Use it as a Facebook profile picture? I think not.

My doctor spoke with Hemispherx’s doctors (Dr. Strayer and Dr. Carter). They were as shocked at my blood as my Doctor was. (Remember that Hemispherx does baseline labs to screen for ANA, etc. several times during the course of treatment.) Hemispherx had never had a patient develop an autoimmune disease after taking Ampligen – not even a drug-induced autoimmune disease. Patients are always thoroughly screened. Hemispherx requested a second set of labs which I gladly sent off to them March 27th. Meanwhile the doctor was unsure if this was / is drug-induced Lupus or a false positive or heaven knows what.

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After leaving the Doctor’s appointment I got over my initial shock and started studying up on Lupus lab work ups and DILE (Drug Induced Lupus Erythematosus). In my research zeal I read like a crazy person. Though Interferon has occasionally produced DILE, the hallmarks of DILE are that the patient has no symptoms of Lupus prior to taking the suspected drug, the patient’s symptoms resolve after the drug is stopped, a presence of anti-histone antibodies and the absence of anti-dsDNA. It is also fairly rare in DILE to have a butterfly rash. Obviously, I was the exact opposite. I had symptoms before Ampligen. The symptoms returned after the drug was stopped. I did not have anti-histone antibodies, but I did have plenty of anti-dsDNA and I had a pretty rash.

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After this episode I developed severe pleurisy. Barely able to maintain adequate pulmonary function (even nebulizing every three hours), my pulmonologist bucked tradition and put me on Medrol for 20 days and ABO etc. After the 20 day course of prednisolone I was mentally and emotionally ready to leap in front of a bus or a train – whichever came first. The pain and pleurisy were greatly diminished by this course of steroids. Just two days after stopping Medrol I saw my ME doctor again and a third set of labs was ordered for when I “felt like I was in pain again, but wait a few weeks because the Medrol will have put everything back into hiding.”

Well, heck I am always in pain. I was freaking out so much (thank you, prednisone, you make my life more interesting than necessary) wondering “how much pain is enough pain to show anything?” and “Will two weeks be long enough to wait?” that my family said “let’s just go have it drawn and then if everything comes out negative and normal and perfect then you can blame it on the Medrol. If that happens then we’ll wait a few more weeks and do it again. However, if things come out positive, then you’ll know.”

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I had that blood draw April 13th and I got the results Monday April 16th. As soon as the ME Doctor’s office saw the third set of positive labs I got a phone call. The Doctor said I likely have MCTD or Mixed Connective Tissue Disorder – an autoimmune disease mixture of Lupus, Scleroderma and Polymyositis. My ANA was positive (by direct test method), my sedimentation rate was elevated, my CRP was really elevated, and this time I also tested positive for anti-RNP and positive for SCL-70. Combining the third set of tests done locally and the Hemispherx labs it was evident that I needed to see a rheumatologist, but no one in this area takes my current insurance. After lots of prayer and a whole lot of frustration a dear friend was able to connect me with a highly recommended rheumatologist who agreed to see me as a favor to this friend. I will be seeing this doctor on the 6th of June. I hope you all understand why I was unable to write blog entries prior to this time.

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All of that brings us to today.

I am freaked out and sorta-hopeful and just a whole bunch of things at once. I seem to swing back and forth between panic and joy all the while living in severe pain. In the meantime I am trying to get my body as pulled together as I can. Quite a few of the gains I made on Ampligen are not currently with me. I can still get out of the house and do a bit of local driving. I do not know if this relapse is a permanent relapse or just stemming from the fact that I am in utter physical agony. I am trying to maintain a positive attitude in and amongst all this.
I really don’t know what is going on or what is going to happen to me. While I do not know what the rheumatologist will possibly diagnose me with nor do I know how to handle my inability to tolerate traditional autoimmune therapies (like steroids and NSAIDs) I do know that I was lead to take Ampligen for some reason. It may not have been the reason I originally thought it would be, but it is a darn good reason nonetheless. I will keep you all posted on what happens.

Sophie

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   
 
      
 
 

I love Mondays.

Tuesdays and Fridays? Meh – not so much. I have gotten used to having only mild ‘as advertised’ adverse events with my little pittance dose of 50 mg of Ampligen. Not a fun “Yay, let’s get infused today!” attitude, but a manageable day nonetheless. This manageability is especially true in light of the benefits I am receiving on a daily basis from Ampligen.

 However, I have now decided that there must be some sort of ‘Factor X’ which ultimately dictates just what kind of an infusion day I’ll have. For example, yesterday was the day from H-E-Double-Hockey-Sticks. It didn’t start out that way. I was fine before I infused. By the time I got out of the building I was feeling rather strange.

Thereafter followed an intense reminder of the horrible nightmare that I lived in for the first four and a half months of treatment. I went into a  full crash. Since I am still not achieving a high level of functionality today I am going to copy and paste selections from previous entries. Tuesday and Wednesday have consisted of:

Sore throat, fatigue, sleepiness, tender lymph nodes, chills, dry mouth, restlessness, dizziness, nerve burning, arrhythmias, nerve pain, nerve twitching, muscle twitching, insomnia, bronchospasm, unusual or vivid dreams, tachycardia, bradycardia, hair loss, increased appetite, changes in food intolerance, muscle weakness, mild flushing reaction, muscle aches, confusion, stiff neck, joint pain, back pain, bone pain, flu-like symptoms, itchyness, depression, hypotension, rash, anhedonia, mouth sores, transient visual disturbances, ringing ears, fluid retention, tightness of the chest.

(Note: This section above contains selections from Ampligen Side Effects which can be read here:
https://theglassmountain.wordpress.com/2011/08/13/ampligen-side-effects/ )

Doesn’t that sound like fun? No? Well, I don’t think it does either. This brings me full circle to why I love Mondays.

On Mondays I am the farthest away from Ampligen as I can get. I revel in the activities and chores and general business of the day. A typical Monday for me now consists of aerobic exercise for 20-30 minutes. I visit three or four stores. I do two or three loads of laundry. I scrub down a bathroom or two (hip hip hooray for sparkly toilets!). Sometimes I even whip out the vacuum. I go out to lunch with friends and shop at the mall. In the evenings I come home and instead of dying from exhaustion I whip up a three course dinner because everything tastes better on Mondays. I settle into bed and sleep deeply and well.

Then Tuesday rolls around and I rely on my Monday memories to take me through another week. Occasionally I get lucky and have a string of almost Mondays. Other times I end up feeling just barely on this side of death. I guess I might be one of those people who has side effects for the entirety of their infusions.  

Either way I love my Mondays.

Sophie      

 

 

*Note* This post will take the place of the post regarding week 26.

I can hardly believe that I have been taking Ampligen for six months now. I have been writing and rewriting this post mentally for some time now. The issue I had (still have) was that of formatting. I wish to show the leaps forward that I have made while still making clear that I have a long way to go to achieve my long-term goals.

Before Ampligen:

I spent approximately 10 hours a night trying to sleep.

I spent another two or sometimes three hours napping in the daytime.

Except for Sundays, when I attempted to attend church, I spent the rest of my time on the sofa. I googled. I watched YouTube. I watched endless hours of tv.

Once a month I saw a doctor and usually had to lie down during the visit.

Occasionally I would ride along in the car to an exotic destination – like the Wal-Mart parking lot. Once in a blue moon I would venture inside, but only if the shopping list was short. I hadn’t driven in about two years.

I avoided showering often since the heat and steam was sure to make me woozy at the very least.

I never cooked.

I never cleaned.

I could pet my dogs and sometimes throw a ball for them, but those times were few and far between.

I always declined invitations to leave the house for even the most important family functions.  

 After six months on Ampligen:

I spend eight hours a night in bed. Most nights (about 90%) those eight hours are spent very deeply asleep and dreaming.

On infusion days I’ll nap for an hour in the afternoon, but most days of the week once I am up I am up for the day.

I make it to Church about 70% of the time and I stay through the service.

I am still on the sofa more than the normal population, but I can engage in other activities that are a bit more stimulating to the mind. I read a book or two a week now. I spend about 50% less time on the sofa than I did before Ampligen.

I still see doctors frequently, but I am pleased to say that I can sit up for the visit.

I go out of the house almost every day. I make multiple stops at various stores in a single trip. On some of those trips I am in the driver’s seat.

I can now shower whenever I want to and I am pleased that baths (which I never really enjoyed) are now a thing of the past. Hot water, steam and standing no longer make me faint or even woozy.

I cook a few times a week now. Sometimes I do an entire meal, sometimes I contribute only a dish or two. However, what matters to me is that I am contributing something.

I have discovered the Swiffer. I use it at least twice a week. I also manage to do the dishes about once a week. I am able to do light cleaning in the bathrooms some weeks.

I can walk the dogs 2/3 of a mile several times a week. We also play fetch in the yard every day for at least 30 minutes. 

I went to almost every family activity this past Thanksgiving. 

The side effects of Ampligen (after roughly five months of sheer torture) are now simply “as advertised” (which you can read about here on Hemispherx’s website: http://www.hemispherx.net/content/rnd/drug_candidates.htm).

My entire family is exceptionally energetic. They juggle multiple jobs, post-grad schooling and family responsibilities. They rock-climb, hike, camp and run for fun. They work hard and they play hard. I always set mental limits for myself. I constantly remind myself that no matter how hard I try and how well I get I will never be as energetic as they are. I will always fall short. I will always be behind.

As I was writing this, the thought suddenly struck me. Why do I think this way? If six months ago I had thought “I’ll leave the house, but only four days a week,” would I really have attempted leaving seven days a week? Maybe. Maybe not.

So, if in six months I can go from no life, to worst life possible (since that is really what side effects of Ampligen can do to one), to “look at me!” who is to say that in another six months or one year I couldn’t be keeping up with my family? Maybe I’ll even be leading the way on some of the adventures.

Sophie (minus some mental blocks)

To see where I started back in June click here: https://theglassmountain.wordpress.com/2011/05/21/my-baseline-and-me-part-1/

I think I have finally hit another bench mark of health. For the past three weeks I have actually been able to depend on my body. I am learning to feel the difference between when a little push will set me back and when a little push is all I need to get quite a lot done.

Most weeks I am out of the house nearly every day. And when I do go out I make several stops. I am finally able to compile a list of things that need doing (within reason) and do them all in a single trip out and about. About one-quarter of the time I am able to return from shopping and do household business such as: making dinner or doing some cleaning.

Side effects vary from infusion to infusion. For example if I have done nothing but rest prior to the day of infusion I can expect to feel almost normal (except for some additional pain, nausea and tiredness) post-infusion. If, however, I have had a busy day prior to infusion I can expect to be flattened by every major side effect I have listed in prior posts within two hours of finishing my Ampligen. I really try to mitigate my activity on the days preceding infusion. I don’t always succeed, but at least I try.

I have successfully ‘re-upped’ with Hemispherx and I am moving into my second six month period. (That said my six month anniversary won’t actually occur until December 7th.)

I am still on my dose of 50 mg Ampligen twice weekly. It seems to do the job just fine for me personally.

I am looking forward to the holiday season this year more than I have in a long while. I’ll actually be able to participate in all (or at least most) of the family activities.  Compared to past years of being bedridden, sick and saying “you go on without me” this year is going to be glorious.

I hope your holidays are wonderful.

Sophie

 

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

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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