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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

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

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      

 

 

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

*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

 

Week 21:

The day after I wrote the prior blog I awakened and had no voice. I felt fine. I just couldn’t speak. I went in for my infusion and endured a good deal of teasing about my pathetic attempts to convey messages through gestures. Let’s just say charades has never been a strong suit of mine. The afternoon passed normally, but by the evening I began to feel strange. It took me a few hours to realize I was actually sick. The tiny sinus infection which I had been ignoring for the past couple of weeks turned into a raging monstrosity.  I also managed to pick up a virus which invaded my vocal chords and then shot into my bronchials. I went from cruising along at a perky pace to dead in the water in a few short hours. I was fairly well bedridden all week. I even missed my Friday infusion. I literally couldn’t walk.

What a nasty bug and the sinus infection didn’t help either. I attempted attending church on the 30th and was unable to make it through the entire service. I slept the rest of the afternoon. So much for my second weekend of planned retail therapy. By Halloween I was finally feeling better and I was out of bed. I took my sliver of energy and renewed my driver’s license. It has been at least two years since I was last behind the wheel. We celebrated Halloween in style with a costume party. The dynamic duo of H. and R. stole the talent show spotlight with their Elfie and Galinda costumes punctuated by a spot on performance of ‘Loathing’ from the musical Wicked.

Ampligen Week 22:

This week I have been trying to regain the ground and momentum I gained in week 20. I have made a few shopping trips to the grocery store. I have made it to the library twice. I was able to walk the dogs yesterday. I made it to church today and I stayed through the service.

So, while I am not setting the world on fire, a friend recently reminded me that recovery is not linear, but hopefully has an upward trend. While I would consider my current energy to be in a trough, I can see a definitive upward swing which is and remains very promising.

I am hopeful that this upcoming week will bring me more energy, more adventures and hopefully a repeat performance of ‘Loathing.’

Sophie

–Ampligen Week #20 —

A note on flu-season and Ampligen:

After much discussion with my doctor, I decided that receiving my usual small dose of a flu shot would be beneficial to me. I have had flu shots every year of my life. With my newfound activity levels my chances of exposure are now fairly high. I took a 1/3 dose of the shot – which is standard procedure for me and has been so for about the past five years. I reacted much as I did last year and the year before. Since everything went well I will have a second 1/3 dose sometime in the new-year (also standard procedure for me). The rest of the family got their usual yearly dosing (more to protect me than for their own immunity). So far, half of them have had a fairly strong reaction to the shot and half have had almost no reaction. So it remains to be seen (in our family) whether this year will be a violent flu year or not. You should always check with your physician to determine what vaccinations are right for you and your family.  

 This week has been very busy. I am crossing my fingers that busy is my new normal. After Tuesday’s infusion I decided to take it easy. I made a batch of cookies because apparently, though I do not consider baking to be a personal strength, my family really has missed my cookies.

 Wednesday I took the dogs for a moderately brisk 20 minute walk and then got 1/3 of a dose of a flu shot. Thought my arm was a bit stiff I still managed a rousing game of fetch for 20 minutes after dinner. Thursday I did two loads of laundry and a bit of fall cleaning projects. Even after my shot and two loads of laundry I still managed a short walk (15 minutes) with the dogs and had company over.  

  My doctor suggested that I skip Friday’s infusion since I would be assaulting my body with a flu shot. I awakened Friday morning with a fixed determination to sort out my closet. Not an easy task – especially since this particular chore has been put off for several years. I should explain that my entire wardrobe consists of pajamas, old jeans, sweats and t-shirts. Or should I say consisted of. Yes, after cleaning out my closet I actually went for some retail therapy for the first time in three or four years. My goodness, how styles have changed since last I set foot in a mall! I hit three stores in two malls. After all this I still had energy to walk the dogs for 20 minutes and stop off at the grocery store. Then I came home and made dinner. Saturday was almost a carbon copy of Friday except it was shoes I chased after. I left my heart in the mall inside a box with a pair of ivory stilettos. After a decade of house slippers and flats I have not got the muscle (or balance!) to step out in five inch heels yet.

 Lest I ruin my streak of energy I took quite a lot of time to rest on Sunday. I walked the dogs for 25 minutes, but nothing other than that besides a long nap and a peaceful Sunday.

 So far, today has consisted of a trip to the library and walking the dogs. However, there were a few things that I left at the mall which I just might have to go back for.

 All in all it has been a fun week. I don’t remember the last time I went out just for the fun of it. Maybe, just maybe I have really turned the corner.

 Wishing you all the same –

 

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
 
 

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