My Immune System and The Avengers

All of my life I have been unable to take full doses of any medication because I am so utterly sensitive to absolutely everything. For example: if I need some deep sleep 6.25 mg of Benadryl knocks me out for 9 hours. (For those of you keeping track that is 1/4 of a pill for 9 hours of uninterrupted sleep.) Ampligen and I could only coexist at 50 mg.  I believe I have mentioned before how I have all of my doctors trained – they know to look up toddler-sized doses and they pick pills that are choppable. Until now.  Apparently my rheumatologist has found one unyielding component of me that requires maximum doses in a triple combination. My immune system. Who knew? I certainly didn’t. I always thought I was sickly. And I am, but in a different manner than I thought. Even though I catch colds and flus, (and everything else I come into contact with) and though I have fevers and a sore throat daily  my immune system is not weak. Just misguided. It is guiding the best and the biggest immune missiles it can at me. Why worry about a cold when there are so many other problems? Perhaps my immune system has some repressed component of self-loathing.  To make a long story short if the strength of The Avengers team could be combined, quantified and then transferred into an immune system – that immune system would be mine.

While there has been a few cases that I have read about where ME/CFS has been vastly helped by Methotrexate I have not found this to be the case with me. So far I have seen good improvement in pain reduction, inflammation reduction and in energy boost, but since my current baseline is somewhere between “shoot me now” and “don’t waste a bullet I’ll be dead by morning” a good improvement has only moved me to the category of struggling which – to quote one of my favorite films – is “like trying only without succeeding.” I usually have a pain reduction / energy boost which lasts about 3 days after the MTX injection.

To try to move me further along the path to health Mr. Rheumy has now added in 20 mg of Arava daily. Arava (as I have recently learned through Dr. Google) is an immunomodulatory drug with anti-inflammatory properties. If this triple combination of Plaquenil, Methotrexate and Arava fails to slow down the war within me – then biologics will be the next step.  Until then – immune system Avengers Assemble!  Or, rather – disperse! And bring me some Shawarma!

 

Sophie

Methotrexate versus Ampligen: A comparision (of sorts)

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

Six Months Post Ampligen

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

Saying Goodbye to CFS Part Two – The Clarification

The prior post ‘Saying Goodbye to CFS’ provoked a myriad of reader responses. The majority of readers expressed positve wishes for me. However, some readers seemed to miss the point of the posting. I was not claiming to never have had CFS/ME I was mearly expressing the fact that it is likely that I do have an autoimmune disease in addition to CFS/ME. Further, I was trying to improve the quality of life for the people of the ME community by encouraging them to not attribute every symptom to ME. As an extreme example of why it is important to not attribute every symptom to ME can you guess what disease can have the following symptoms?

Nausea

Bloating

Stomach pain

Backache

Malaise

Enlarged lymphnodes

Give up?

Well, you could either have ME or possibly end-stage pancreatic cancer. The symptoms fit both.

I was not trying to say that had I known I also had an autoimmune disease years earlier that 100% of my life would have been different, but I am saying that perhaps it would have been a little easier.

One final note. A friend left this comment on the blog which I didn’t approve (sorry, M!) because I was waiting to write this entry and these sentiments were exactly what I needed to add in right about here, “I am not sure that the only explanation of your 21 years of sickness is the Autoimmune disease: my ex had just the autoimmune disease, but the CFS/ME symptoms were not there, although many others were. Most autoimmune disease among CFS/ME patients come with time… But well, I really hope that you recover well from everything, whatever it may be.”

My thoughts exactly. For all of us.

This is going to be a busy posting day. I have two more posts waiting to go up.

Sophie

Saying Goodbye to CFS…

**A quick note about the title of this blog. While I no longer meet the official criteria for defining CFS/ME because my fatigue can be explained by another factor other than ME – I believe that there is likely some overlap of symptoms, features and possibly the etiology of autoimmune and neuroimmune diseases that is not yet fully understood. Therefore, I will continue to seek help from my ME doctor as well as continued treatments for ME for the foreseeable future. After all, I still feel awful no matter what ICD-9 codes are attached to my name.**

As many of you are aware I have been following the trail of a possible rheumatic illness for the past 21 years. I have been more especially on the hunt since exiting the Ampligen 511 Trial earlier this year when my end of study labs revealed a positive ANA and also several other abnormal autoantibodies. After a plethora of lab draws and subsequent conformational labs I can now say that I do indeed have an autoimmune disease. Probably. Welcome to the wonderful world of autoimmune diseases.

My appointment with the new rheumatologist was a smashing success. The waiting room time was minimal (under 30 minutes) and he spent two hours and 15 minutes with me discussing my entire medical history. We covered every scrap of information that was faxed over by my ME doctor and all the interlinked computerized records of the past decade. He asked every question I was hoping he would ask; he addressed every question I threw at him with competence and proficiency; he ordered every additional test I was hoping for; and as icing on the proverbial cake he was really super-duper nice. Add to all that the fact that we have mutual friends and it was a simply dreamy appointment. I hoped and prayed that the appointment would go well, but that appointment was above and beyond anything I was hoping for.

The new rheumatologist has given me a new temporary label of UCTD (Undifferentiated Connective Tissue Disease). I expect to remain under the UCTD umbrella for at least the next month. The new rheumatologist explained yesterday he needed an ICD-9 code that would allow him to run additional tests without having to get prior authorizations for every little detail. So for the next month I will again have all the prior lab tests drawn (fifth time). I will also undergo a series of really fun-sounding exams to determine if I have sustained any organ damage. If there is organ damage I can expect further testing to follow to figure out the extent thereof. My next several weeks have just become booked solid. Once all the tests are in the new rheumatologist (hereafter refered to as Mr. Rheumy because that name is infinitely cooler than ‘the new rheumatologist’) will give me a definitive diagnosis, prognosis etc.

Mr. Rheumy did feel strongly that I do have a real (ie: not drug induced) autoimmune disease. Due to this he has put me on Plaquenil (HydroxyChloroQuine / HCQ), Celebrex and Medrol. (I politely refused the Medrol since steroids and I do not mix. He explained that he never forces anyone to take steroids unless the steroids are needed to save the organs. That works for me.) I am seeing Mr. Rheumy next on July 3rd.

In the meantime I literally have places to go and technicians to see.

It is strange to relate the title of this blog ‘Saying Goodbye to CFS’ made me sad. I have been under the umbrella of the disease-of-a-thousand-names since I was seven. When I speak with fellow CFS/ME sufferers there is a camaraderie, an understanding and an ease that I have come to rely on.

When you say “brain fog,” I understand you.

When I say, “I am so tired!” you know what I mean.

The hardest part for me (so far – give me time and I am sure I can come up with something harder to deal with) has been wondering how long have I been harboring an autoimmune disease? And more to the point, I suppose, what would life have been like if I had found it at age 8? Or 12? Or 17? Or, or, or? Now it may be that this autoimmune disease was smouldering in the background and it was just waiting to spring to life. However, if that is the case, why do I have the same symptoms and problems that I did back in 1989? Why do I feel exactly the same as I did when I was eight? Maybe CFS/ME really is autoimmune. Who knows? I sure don’t.

So far the only consolation to a life lost I have been able to come up with is this –  and I ask you to read the following with an open mind.

Don’t stop looking once you have an answer. Keep looking for new treatments and new avenues of disease. I fit the ICC criteria until yesterday when I suddenly didn’t anymore. If one person can find a road to better health because they took a second look or a third look or a 50th look at their disease then what I have lived through will be worth it.

 

Why, you may ask, am I asking you to take another look at your disease when I know you have fought for so long to get a diagnosis? Why when you have in your possession that truly precious ICD-9 code that means you are not crazy, or an attention seeker or (my personal favorite) a drug-seeker? Why do I ask you to reevaluate the fact that you have a neuroimmune illness that is debilitating even on the best of days? Because at 4:00 am this morning I woke up and wondered “what if?”

I have had the best medical care available in the USA. The majority of this care over the past two decades has been private pay, with top doctors in every specialty.  I have had more tests run than just about everyone I know. I have had the ANA screening and ANA panel so often I am surprised that the lab technicians don’t recognize my blood on sight. I have had spinal taps, MRIs, CTs, pulmonary workups, cardiology work ups, neurology work ups, endocrinology workups, gastroenterology workups and every other specialty you can think of a number of times over the past two decades. Added to this is the fact that the team of doctors who have been looking after me genuinely care about what happens to me because they good doctors. They are good people. And they want me to get better. If the best specialists in the country couldn’t find an autoimmune disease in me for 21 years, isn’t it just possible that I am not the only one?

Take a second look at your diagnosis. If not for yourself, then for me.

Sophie

From Ampligen to Autoimmune

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 6^th 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

At the End of Ampligen

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   

 

      

 

 

Ampligen Weeks 33 and 34

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      

 

 

Ampligen Weeks 30, 31 and 32

Well – the 75 mg Ampligen dose didn’t last long. It started erasing every bit of progress I had gained on the 50 mg Ampligen dose. So in the middle of week number 30 I cut back again to 50 mg – just in time to catch one of the worst flu bugs I have ever caught in my entire life. 

That bug just held on and on too. I ran a fever from December 29th right through January 4, 2012. As one friend so quaintly put it, “what a way to ring in the new year.” Between the flu, the colds, the bronchitis, the sinus infections and myriads of other little bugs the likes of which I never have caught before I have come to the conclusion that Ampligen is effectively downregulating my immune system.

All these years I thought that my immune system was rather weak. Apparently, not weak enough for the Ampligen’s liking.

Another odd thing that I cannot ignore any longer is the way my nails are growing. They have grown faster, longer, stronger and sharper than ever before. If I do not keep my nails trimmed to the quick I cut myself on them. Before starting Ampligen I have had (maybe) two in-grown toenails in my entire life. I have now had several in a row. I finally have had to go to a podiatrist and have part of the nails removed. (Yes, that was tremendously fun.)

My body also seems determined to react to the Ampligen in varying extremities some weeks based on some as yet unknown factor(s). I have decided to call these mini surges in adverse events “Ampligen tantrums.”

On the other hand I’ve waited a long time to announce with confidence that I can exercise again. Not a lot, but some. I can do 20 minutes of aerobics or a brisk 30 minute walk  every day. Best of all I still have leftover energy to shop, to cook dinner, play with the dogs and even have friends over. After a full day I can expect to do less the next day, but I can still exercise and leave the house. This is truly a remarkable thing for me.  

It has been a long, hard road so far, but a road very much worth taking. I still expect that my body will throw “Ampligen tantrums” every so often, but at least I can now confidently take a 30 minute walk to chill out.

Happy New Year!

Sophie

Ampligen Weeks 27, 28 and 29

I have been doing quite a lot recently. Except, of course, for keeping up this blog as well as I had hoped. In the past three weeks I have been out and about for hours at a time. There have only been two days in the past three weeks that I have not been out to at least one place. I am adding in some variety to locations too. I have started looking for a car. (Dodging the used car salesmen effectively is excellent cardiovascular exercise.) I have also been to a few Christmas parties, and a birthday party, taken the dogs to their favorite pet stores and generally have been just living a life of relative freedom compared to last June.

My new favorite activity is cleaning. I love cleaning simply because I can do it now. While Cinderella and Snow White just wanted to quit keeping house I am excited to begin. Cleaning and doing laundry are the happily ever after in my fairly tale.

I raised my dose from 50 mg to 75 mg last Friday. I have had an increase of side effects, but as long as I keep up with my supportive medications (Tylenol, Claritin etc.) I can tolerate the side effects. I raised the dose because the side effects at 50 mg were abating.   

Several people have asked me recently if the opportunity to take Ampligen and the progress I have since made has given me hope for my future. They have also asked if I am worried about a relapse after Ampligen treatment ends. I would respond that if my hope was dependent upon Ampligen I could not have survived the past 21 years.

Hope is a changeable word. Nowadays when people ‘hope’ for something they really mean they ‘wish’ for something. In biblical times the word hope actually meant something entirely different.  It meant to feel deeply the certain truth of something that had not yet occurred because of faith in God.

My personal faith in God stems from the belief that God is the father of my spirit, and though for 21 years (and counting) my body does not work nearly as well as the bodies of many people on earth, I still mean a great deal to my Heavenly Father. 

As proof that the circumstances of our lives do not reflect the actuality of our value to God, he sent his son, Jesus Christ, into the world to grow from boy to man and to suffer more than any human ever could. Jesus not only paid for the sins of mankind, he also paid for the inadequacies created by social, economic and yes, even physical, deficits. The atonement was and is God’s way of eventually ‘balancing his books.’   

The prophet Isaiah said, “Surely he hath bourne our griefs and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted. But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.”  

(KJV Isaiah 53:4-5)  

If Jesus, being perfect, could be so smitten and abused by the world and yet remain beloved of God then so indeed am I. And so are you.

One of my favorite quotes reads thus, “This is a paradox of man: compared to God, man is nothing; yet we are everything to God.”

(You Matter to Him, President Dieter F. Uchtdorf, Ensign November 2011 page 20.)  

This is why I have hope. I matter to God. And should God choose to heal me I will be grateful. Should God choose to let me live in sickness all the days of my life I will still be grateful. Because it is not health or sickness I am grateful for. It is love. I am grateful for the love of our Heavenly Father. Hope isn’t about wishing for things. Hope is about feeling joyful in the knowledge that no matter what happens to you your life will turn out well and that everything will come out even in the end.  

Merry Christmas and much love,

Sophie