You are currently browsing the tag archive for the ‘Ampligen Treatment’ tag.

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.

“““““““““““““““““““““““““““`

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…

““““““““““““““““““““““““““““`

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.

“““““““““““““““““““““““““““`

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…)

““““““““““““““““““““““

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.

“““““““““““““““““““““““““““““

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.

““““““““““““““““““““““““““`

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.

““““““““““““““““““““““““““`

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.

““““““““““““““““““““““““““““““

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.

““““““““““““““““““““““““““““

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.”

““““““““““““““““““““““““““““““““

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.

““““““““““““““““““““““““““““

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

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

–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
 
 

Full Disclosure: The author of this blog is PRO AMPLIGEN. The author hopes to see Ampligen approved by the FDA. The author received no monetary gain or remuneration for posting the following. 

~~~~~~~~   

    Several weeks ago I read thorough my blog and was drawn to the copious amounts of side effects I have listed here. I mentally reviewed the prescriptions that I have had to add into my daily routine just to cope with Ampligen. In my pill basket I have everything from sleeping pills, to narcotics, to anti-emetics.

     I started to feel inadequate as a person. I felt that I should be tougher. After all, I am a 20+ year sufferer of ME. I have been through major surgeries, been in a few major accidents and survived some of the most awful tests medical science has devised. Shouldn’t I take the gift and opportunity of Ampligen that I have been given and be more grateful? In the immortal words of Sharona Flemming shouldn’t I just “suck it up?” I felt like I should be the inaugural member of the Ampligen 12-step program. “Hi, my name is Sophie. And I’m struggling with Ampligen.”  

     I felt that I let myself and my family down by not sucking it up more than I already have. It has been so bad at times that I made sure that my estate planning documents were updated, but I didn’t share that with my family or my doctors. Have I made tremendous progress? Yes. Absolutely. Is it worth it? Absolutely. All that didn’t change the fact that I felt like a weakling and a bit of a loser for being so ill with side effects.  

    So I started researching.

  Over the past few weeks I have been able to communicate with many more Ampligen patients. To my utter shock I have heard story after story that were similar in so many ways to my own. Patients with nothing else left to try are struggling valiantly to take their medicine. Patients are on almost every spectrum of pills that pharma can provide to ease their way through Ampligen. Yet, there is no open dialogue between patients.    

   It seems that I share another commonality with other Ampligen patients as well. Many patients are guilty of understating their difficulties with Ampligen to their doctors for fear that they would be removed from the medication. I am guilty of this. I relate my weekly experiences with a smile on my face and a happy lilt to my voice. I never mention the the screams that haunted my family in the small hours of the night as I struggled to bear pain that was simply unbearable.   

    Armed with confirmation from other patients that I am not weak nor am I alone in my side effects I decided to write about about possible side effects. 

I do NOT want people to be discouraged from taking Ampligen. Nor do I think this one tiny blog would bear much sway in the mind of someone who was already considering Ampligen. My hope in writing this piece is simply to get people prepared. Had I not had familial support I would not have been able to stay on Ampligen and make the progress which I have made. I was woefully unprepared. It is my hope that you (whoever you might be) will be ready for anything and everything and not need to be. After all, isn’t it a nice surprise to be overly prepared?

~~~~~~~~~~~ 

NOTE: The following is compiled by a non-medical professional. The following is the experience of one patient taking the experimental drug Ampligen (produced by Hemispherx). No outside verification of the following list has taken place. Please note that Hemispherx did not sanction this list nor were they informed it was being written. The non-medical professional blog below is the opinion of one patient in the trial group. The opinion below should not be considered the reality for any other patients currently taking Ampligen,  patients who have taken Ampligen in the past nor should it matter for those considering Ampligen in the future. The author of this blog is a non-medical professional who openly wants Ampligen to be made available through the FDA.

Ampligen Side Effects:

Note: Those symptoms listed in bold type are taken from Hemispherx’s website. You can read their list by visiting here: http://www.hemispherx.net/content/rnd/drug_candidates.htm

Those symptoms in bold italic type are symptoms from Hemispherx that I have experienced.  

The rest  of the symptoms come from me. I’ll add or update this post should any other patients wish to anonymously contribute their side effects. Also, since I am a non-medical professional I didn’t categorize these in any particular order.  

Sore throat, fatigue, sleepiness, anemia, tender lymph nodes, chills, dry mouth, restlessness, dizziness, nerve burning, arrhythmias, nerve pain, nerve twitching, diarrhea, muscle twitching, elevation of kidney function tests, insomnia, migraine, headaches, bronchspasm, unusual or vivid dreams, tachycardia, bradycardia, anorexia, occasional temporary hair loss, increased appetite, changes in food intolerance, muscle weakness, mild flushing reactionmuscle aches, confusion, stiff neck, liver enzyme level elevations, joint pain, back pain, decreased platelets and white blood cell counts, bone pain, flu-like symptoms, itchy, depression, hypotension, aggressive tendencies, rash, anhedonia, urticaria (swelling of the skin), upper respiratory infection / bronchitis,  mouth sores, transient visual disturbances, ringing ears, fluid retention, erythemia, tightness of the chest

 ~~~~~~

Ultimately I hope that by reading this three things will happen.

1. Patients considering taking Ampligen will be prepared for the worst knowing that it will likely not affect them.

2. Patients will know that side effects are real, that side effects vary from person to person and CAN BE MANAGED so that Ampligen can be a helpful and wonderful experience.

3. Patients will begin to be more open about their struggles so that other patients who have been through Ampligen before can lift and inspire them to continue on the path to better health. We all need each other.  My side effects are finally beginning to loosen their grip on my life. Maybe that is why I was able to write this now.

I guess all that is left to say is “Hi, my name is Sophie and I’m struggling with Ampligen. But it’s getting better.”

Have you ever played the telephone game? What begins as a simple statement winds its way through many pairs of ears until the original statement is unrecognizable. For example – “You are severely anemic because of the Ampligen and you’ll be taken off of the drug if the anemia doesn’t get better” actually started out as – “You’re becoming mildly anemic. Eat more red meat.” It is a good lesson for me to remember that dire news isn’t always dire news.

I had quite a banner Ampligen week. Wednesday I woke up feeling something that I had forgotten about. I felt rested. I felt like I had actually slept. I ended up being able to take the in-house vacuum apart and haul it down to the vacuum repair shop. I didn’t crash on Thursday. I did the opposite. I reassembled the vacuum, vacuumed the entire house, scrubbed both bathrooms (including tubs and showers), did two loads of laundry, got every drain in the house running faster, did six minutes of brisk walking, played fetch with the dogs for 30 minutes outside in the heat, took a steamy hot shower to get off the sweat and dog slobber (and I didn’t feel woozy!), made a few phone calls, read half a book, painted a water-color, took a one hour nap and then had three guests over for three hours. I went to bed at 10:30 and I was up at 6:40 feeling rested and raring to go. Friday I exercised the dogs prior to the infusion, got infused, came home and sent out some emails, made a few more phone calls and finished my book. I was busy all morning and into the afternoon. I didn’t end up crashing until Friday evening at about 7:00 pm. Almost three full days of energy is unheard of for me!

The crash caused more pain, but it was tolerable with Tylenol. I did feel very dizzy and light-headed and had a major increase in nausea. I did not sleep well thanks to the dizziness and nausea. The major crash symptoms that were manifested were anxiety and tears. It was odd. I cried my eyes out for hours without feeling really sad. The only thing I have to compare it to is when a small child has been allowed to stay up to late and sobs for lack of sleep. I felt anxious without really being able to figure out why.

 I wasn’t really tired on Saturday like I would be in a normal crash. I was sleepy since I had not slept for more than 4 or so hours on Friday night, but I wasn’t dead tired like I expected to be. I slept well on Saturday night and I feel back to baseline or even a bit above baseline today (Sunday). This is just more proof that Ampligen is working for me. While my house is usually clean enough to eat off the floors that is thanks to the dedication of my family. I have not been able to contribute to the cleaning process for the past year or so. To have done all this and still feel this good is beyond exciting.       

I stayed at the 100 mg level for both infusions this week. I had what I would describe as an increase in flu-like symptoms plus a little bone pain tossed in for good measure. The Claritin still works wonders. At the end of week 9 I can affirm that though the process of the Ampligen is more physically, emotionally and spiritually challenging than anything I have ever done – it does work.

I know that there are many people who would like to take Ampligen and cannot due to health, location and  /or costs. It is my hope that this drug will be approved by the FDA so that anyone who wants to try Ampligen may try Ampligen. In the meantime, if you live close to an infusion site you might consider an Ampligen trial.

 Some insurances will cover the office visits and infusion costs and a half dose of Ampligen is 7,200.00 per year. That works out to 600.00 per month. Not cheap by any account, but many patients spend twice that on various OTC medications, acupuncture, antivirals and other treatments. I think the statement “shoot for the moon; even if you fall short you’ll still land in the stars” can be applied here.   

Sophie

Archives

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 23 other followers

July 2017
S M T W T F S
« Aug    
 1
2345678
9101112131415
16171819202122
23242526272829
3031