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

The Better:

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

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

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

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

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

The Same:

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

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

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

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

Sophie

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

–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
 
 

Sometimes you have the feeling that because you are doing something that is incredibly hard, stressful and more important than anything you have yet attempted in life, that somehow in someway life will allow you to focus simply on your target. That feeling is usually a false flag.

Like a pirate ship sailing under a banner of peace – life sails up beside you and overwhelms your defenses. If you survive the attack you are left to wonder why the heck you didn’t see the approach. 

That was what the last week has been like for me. The combination of physical and emotional stress of the past week overwhelmed the benefits I had been steadily gaining. I have been knocked right back into feeling like I am in my first week of Ampligen. To be honest, even if I was a healthy, well person I would probably be feeling like this. I hope I never have to live through another week like this one ever, ever again.

I managed to pick up a few new side effects as well. It is possible that my body just couldn’t cope with the stress. I may actually be sick, but who knows? When you feel this crappy it is difficult to differentiate between causes and effects.

I seem to have developed a rather bad case of pleurisy. Between trying to breathe as lightly as possible and struggling to find a comfortable position for my ribcage I could just scream. I can’t take my pain medications or my Claritin. The pain medications (except for Tylenol) depress my breathing further. The Claritin dries my mucosal secretions out (I know… TMI) making it harder to breathe too. Hypoxic-Blue is just not my color.

Between the pain, the usual infusion symptoms, the new breathing problems and the events of the week I feel on the verge of total physical, emotional and mental collapse.

Fortunately I don’t wave white flags.  

Sophie

 

Twelve weeks down…many, many more to go.  To compare where I was three months ago to what I am up to now click here: https://theglassmountain.wordpress.com/2011/05/22/my-baseline-and-me-part-2/

Sophie’s Typical Week: 08/28/11

Sunday:

I am up by 7:30 am. I still only make it to church about 50% of the time.  (This is mainly due to the fact that I cannot bear going to church looking like a slob. Since I will only go to church showered, hair done and looking pink and primped, it may be a while before the percentage of Sunday church attendance rises.)  I return home and take a one hour rest. I will do a couple hours of computer work (emails, blog etc.) and then help with either dinner or dessert preparation about 70% of the time. I take the dogs out for a 30-50 minute play session (fetch, obedience, agility etc.). I will watch some tv and then work on an art project or sometimes speak to a friend until about 10:00 pm. Then it is off to bed.

Monday:

I wake up around 7:30 am and watch the news, do a bit of reading and then a few minutes of exercise. The exercise is usually 5-7 minutes of walking at about two miles / hour. I usually manage to repeat this exercise twice more in the day. I try to get an hour or so of work in on the computer before lunch. I have managed to make myself lunch about once per week. After lunch I take a one hour rest. Following that I go out into the world. I make one or two stops totalling about one and a half hours. I come home do some more things around the house (very basic things, like dusting a room or brushing a dog). After that it is dinner, tv and bed.

Tuesday:

I  am up at 7:30 am and I usually try to work in a brief walk before leaving for my infusion. With my infusion time and drive time I usually do not arrive back home until mid-afternoon by which time I am more than ready for a nap. Out of the past three weeks, 50% of the time I have made a stop at a store on my way home from and infusion. I am usually wiped out for the rest of Tuesday. I get to bed by 10:30 pm and sleep fairly well (excepting the nightmares, of course.)

Wednesday:

Wednesday mornings are a total wash-out. By Wednesday afternoon I am usually able to check email from the couch (as opposed to the bed) and by Wednesday evening I am usually just a touch below my new baseline.

Thursday:

Is much like Monday, except about 70% of the time I end up with energy to do something additional such as baking a batch of cookies or perhaps something more ambitious like making soup. I have been able to have a few friends over and because of the infusion schedule I usually receive company on Thursdays. While I am quite tired after visiting, I am able to do it even though I have already been out of the house earlier in the day.  

Friday:

A copy of Tuesday.

Saturday:

Is a copy of Thursday (minus the company).

 

To the casual observer my week may appear very similar to what I was experiencing three months ago, but I can feel a difference and see a difference. Having been virtually housebound for the past several months and suddenly being able to go out two to three times a week seems miraculous to me. Going out is the biggest change, but what has made the most difference so far is the little things. Just staying alive seems easier. (Except for infusion related living – that is an entirely different story.)  

I no longer just sit on the couch and watch endless hours of television. I can now sit in a regular chair for a couple of hours at a time. I have been able to consistently play with my dogs. I can now walk through a store for 40 minutes without thinking “I’m gonna die!” I can read again (and more importantly understand what I have read and remember it.) I am able to write this blog more easily. There seem to be a hundred little things that are just easier to accomplish. I am not blazing through life, but at least I can literally stand up and you have to be able stand before you can run.

Sophie

I am making progress. I hit two major milestones thanks to Ampligen this week. The first is that I managed to go out to more than one store in a single trip. I made it through three stores in one day! I was out for two hours. I did come home and feel less than stellar, but I did it. With a nap and some Tylenol I was able to have a normal evening without too much increased pain. I was even able to play fetch with the dogs after dinner.

 The other milestone was I was able to make it to church. I didn’t stay for the entire service, but it was the first time I have been in a very long time.  I came home tired, but after a nap and some lunch I have been able to get to work on this blog entry. Pulitzer worthy it is not, but hopefully it is at least coherent!

The bone pain has reduced in severity and duration. I usually have bone pain for about 24 hours after every infusion. 

Nausea is still my constant companion. Occasionally his buddy, the Technicolor yawn, will spend a few hours with me.  

My hair follicles still burn as if each individual hair is on fire, but only for about 24 hours after each infusion (as opposed to constantly when I began the Ampligen). The chemical burning feeling seems to be directly related to Ampligen infusions and hair loss. The more a section of my head burns, the more hair will fall out from that section of scalp.

The main side effect I have had to learn to cope with this week is dreams. What happens when your brain has been wrapped in a velvet cloak of fog for more than two decades? What dreams begin to awaken when the cloak begins to be lifted? And more importantly what the heck can I do about it? 

I know that I have mentioned vivid dreams before in connection with Ampligen, but I never knew dreams could perfectly mimic life right down to the smells and tastes. Dreams are supposed to be images, sounds, sensations, emotions and thoughts experienced while sleeping, but this is almost like living another life. And that life is horrible and frightening beyond imagination.  

Let me make perfectly clear that I do not enjoy violent or scary movies, tv shows or books. If the ending of a book or movie can’t be summed up by the tagline “and they all lived happily ever after,” I usually refuse to have anything to do with it. I haven’t had a tragic or scary real life either. Yet, I have awakened the whole household almost every night this week. I have awakened them with sobs of wrenching despair and piercing screams emanating from sheer terror. Why did I dream things that broke my heart beyond repair? How in the world did I end up running for my life, screaming in terror and soaked in cold sweat? I am not safe whenever I shut my eyes. Dreams stalk my nights and my naps.    

As an added bonus it is nearly impossible to awaken me from one of these new kinds of dreams. When I do awaken, either by being shaken awake by a family member or screaming myself awake I cannot shake off the dreams. I fall asleep and go right back into dreaming where I left off. It is awful to be unable to escape.   

So far I have not found anything to relieve or change the dreams. I can only hope and pray the intensity of these dreams will stop soon. If not for my sake, then for the sake of the other poor, sleepless souls that have to live with me.  

Any suggestions for those of us trapped in Nightmare Land?

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

Treatments #15 and #16:

“The best laid plans often go awry” and “the road to h*** is paved with good intentions.” These two sayings should have run though my mind on Tuesday morning. They didn’t. So what happens when common sense won’t be heeded? Pop media bites you in the backside – as in ‘Ampligen IV – The Ampligen Strikes Back.’

While I had originally intended to only increase my Ampligen dosage by 25 mg – 50 mg I was told that could not be done. I had to go from 100 mg to 200 mg. (I have since been corrected and that is not the case.) However, at the time I didn’t want to make a fuss. So, like an idiot I said “okay, let’s double it!” It was also time for the week eight blood draw.

Thereafter followed a rather scary evening. My temperature which started at a pre-infusion 96.7 degrees farenheit began to rise. Two hours post infusion I was at 98.9 and still climbing. Four hours post infusion I hit 100.  Another hour and my fever rose to 102. My fever continued to rise from there, but the new pressing problem was my inability to consume adequate liquids since my throat and tonsils were so sore I could not swallow. My family was prepared to take me to the ER, but I was too ill to go. All I could do was sit and shake like a giant chihuahua and swallow as much Tylenol as I could safely take. To my great relief my temperature began to decline after midnight.

Wednesday brought a whole basket of delights. I witnessed the return of mind-blowing bone pain, muscle pain, joint pain, lymph node swelling (and pain), spine and neck pain and more hair loss than usual. This was in addition to my usual nausea and food avoidance.

Thursday was a bit more survivable than Wednesday.

Friday I reported my lack of success with the jump to 200 mg. I then promptly dropped back to my 100 mg level. My brief excursion to the 200 mg level made my body ready to attack even 100 mg of Ampligen. I had more pain (bone pain especially) and more swollen lymph nodes than I had previously had at the 100 mg level. 

Several hours after my Friday infusion I got a call from the Doctor’s office. My doctor explained that (luck me) I was experiencing another rare side effect of Ampligen. I have become extremely anemic. I now get to subject my nauseous self to lots of red meat and lots of iron supplements or risk losing the Ampligen because of the anemia.   

The saga (like Star Wars) continues. Will someone please notify Harrison Ford?

Sophie

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