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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
Treatments #13 and #14:
I have heard from some other previous and current Ampligen users that they have much stronger immune systems when they take Ampligen. Apparently that is not yet true for me. I managed to catch a nasty bronchitis. It hit hard and fast. One evening I was okay, the next I could barely breathe. So I am on a short course of IV antibiotics. Yay for me!
I am still on the 100 mg of Ampligen. I plan to move up to 150 on Tuesday. (No pain, no gain right?) My biggest issue is the nausea and a new pain in my hip bones and sockets. I have no idea why this new pain turned up. It started before the antibiotics so I am thinking those are not the problem.
I am still taking all my antiemetics and my ppi’s, but I am still sick. So, I am not really eating. Not eating is kind of a new experience for me. I usually like (okay, love) my food, but nothing is even remotely tempting. I like to be optimistic, so I am hoping that this new anti-food stance will help me shed a few extra pounds.
On the plus side I am getting out of the house more! I have been on three outings this week. I have hit a grocery store, a media store and WalMart. I also had the energy after coming home from the store to write this mildly coherent blog. I have had a few friends over and had several long phone conversations with relatives. I could not do any of these things without severe and immediate relapses just seven weeks ago. I must say – well done Ampligen!
I am still exercising for a few minutes at a time a few times per day. I am continuing with the classical music therapy. I have yet to see results from either of these two side experiments.
Alrighty then, that about covers it.
Sophie
ps – yet another major step forward has occurred in ME. There are new guidelines for receiving a diagnosis of ME. Also the name Chronic Fatigue Syndrome has kicked the bucket. All those in favor of taking that kicked bucket and throwing it into the Marianas Trench please raise you hands. (It looks unanimous to me!) Check out this link for the new Myalgic Encephalomyelitis International consensus Criteria (MEICC) http://www.meassociation.org.uk/?p=7173
I am now six weeks into my Ampligen treatments. There have been some serious side effects and some seriously hopeful moments. I have been at the 100 mg now for two infusions. It is a great way to catch my breath, take stock and figure out what is and what is not Ampligen dose related. Since you cannot miss a dose of Ampligen, I think that for me at least, cutting the dose way back is a viable way to get ahold of the side effects and take stock of my health. I can’t plan my next steps if I am just barely surviving.
I have found the following symptoms to be directly related to the dose. Bear in mind that this is reflective of my body and may or may not apply to you should you choose to do Ampligen.
At the 100 mg level –
Lymph node swelling has been reduced to mild tenderness.
Pain has been reduced to mild and is now completely taken care of by a dose of Tylenol.
Fever has gone entirely.
Spine and neck pain has been reduced significantly.
The symptoms which have not yet improved on the lower 100 mg dose are these: hair loss, water retention, headaches and /or migraines and nausea. I hope that these symptoms will improve in the coming weeks. Until then, I’ll just have to learn how to manage them the best I can.
On a positive note, I have been feeling better. While I am not even close to ‘running road races’ I am doing more than I have in the past. So far this week I have read quite a bit, played with the dogs almost everyday (and yesterday I did agility with them for 30 minutes), I climbed three flights of stairs without feeling dizzy and started work on another painting. I have also felt well enough to do some reflective thinking.
I have noticed that as I have gotten sicker these past five years, my taste in music has shifted from classical and opera to fluffy pop music. I was channel surfing last evening and came across a science program dealing with music and its effect on brainwaves. It was fascinating watching the MRIs and CT scans show changes in the brainwaves of those who immersed themselves in classical music. Their brains showed a distinctive change from chaotic to organized. I decided that since my brain fog seems to be clearing a bit I would see if returning to listening to classical music would speed that process along. I am trying to listen to one to two hour(s) of classical music every day. I plan on keeping a log to see if thinking becomes easier with the music therapy.
I also have decided that since I am so deconditioned from my years of illness I am going to try to do a few minutes of mild activity two or three times a day. I am also going to try exercising one group of muscles at a time while I am seated to see if I can strengthen them without causing a PER (post-exertional relapse). I am keeping a log of this too and we shall see how it goes.
Overall – I am enjoying my Ampligen experience. That may sound bizarre coming from someone whose blog is filled with sentiments of crushing bone pain and intense illness, but I am really learning quite a lot about myself. It seems to be an annoyingly true fact that personal growth comes from struggle and pain. I just wish the struggle were easier and that pain was optional.
Sophie
ps> There have been some intersting developments in the world of ME/cfs research recently. These links will take you to some reserach into a possible cause of ME/cfs. While more work needs to be done and many studies have yet to be validated, the idea of a Dorsal Root Ganglia (nerve bundles along the spinal column) infection by a herpes virus (possibly VZV) is quite exciting.
To read more check out Cort Johnson’s essays on Phoenix rising here: http://forums.phoenixrising.me/content.php?446-Light-on-ME-CFS-I-Bad-Reception-A-Key-to-ME-CFS-Uncovered-The-Light-Gene-Expression-Studies
To read another study done in November 2009 by Dr. Shapiro: http://www.ncbi.nlm.nih.gov/pubmed/19520522
It is a good thing that I decided to do as I had been instructed and take my pills. I sure needed them this past weekend. In all my years of illness and surgeries and procedures I have never hurt so much for so long. I popped my pain pills without pause and drowned myself in lidocaine and anti-nausea medications. I was still on the backside of “utterly miserable.” About a year ago, I read something that changed my perspective on regaining my health. I haven’t succeeded very well at applying my perspective change, but life is all about working to become a better soul. I am posting a portion of the article below. Perhaps others will succeed at applying it more consistently than I.
“Have you ever been in an airplane and experienced turbulence? The most common cause of turbulence is a sudden change in air movement causing the aircraft to pitch, yaw, and roll. While planes are built to withstand far greater turbulence than anything you would encounter on a regular flight, it still may be disconcerting to passengers.
What do you suppose pilots do when they encounter turbulence? A student pilot may think that increasing speed is a good strategy because it will get them through the turbulence faster. But that may be the wrong thing to do. Professional pilots understand that there is an optimum turbulence penetration speed that will minimize the negative effects of turbulence. And most of the time that would mean to reduce your speed. The same principle applies also to speed bumps on a road.
Therefore, it is good advice to slow down a little, steady the course, and focus on the essentials when experiencing adverse conditions.
The Pace of Modern Life
This is a simple but critical lesson to learn. It may seem logical when put in terms of trees or turbulence, but it’s surprising how easy it is to ignore this lesson when it comes to applying these principles in our own daily lives. When stress levels rise, when distress appears, when tragedy strikes, too often we attempt to keep up the same frantic pace or even accelerate, thinking somehow that the more rushed our pace, the better off we will be.
One of the characteristics of modern life seems to be that we are moving at an ever-increasing rate, regardless of turbulence or obstacles.”
From the talk ‘Of Things That Matter Most’ by President Dieter F. Uchtdorf Second Counselor in the First Presidency. The full text of the article can be found here: http://lds.org/general-conference/2010/10/of-things-that-matter-most?lang=eng
My family (supportive folks that they are) gently pointed out that I was flying my proverbial airplane too fast for the conditions. So what if I was taking 200 mg of Ampligen? I was so medicated I couldn’t move. I evaluated my position and on Tuesday I had my dose reduced to 100 mg.
As a result I have been able to get by on Tylenol. I also got a small burst of energy after the infusion yesterday. I was able to write a letter to my niece before she departs on a long-awaited trip, I played with the dogs (who were more than thrilled to be active again) and I slept well. In short, by reducing my ‘speed’ I maximized my benefits. My plan is to remain on the 100 mg for as long as I feel side effects and receive benefit from the medication. I may increase the dose again as my body adjusts to Ampligen. I may not. It all depends on the turbulence.
On Monday, I said goodbye to 10″ of hair. It was a sad and painful process. It didn’t help that the hairstylist wept while she snipped off my hair and the fact that my mother (whom I had brought along for moral support) also wept. As the locks of hair fell to the floor my hair dresser and my mother were amazed at how much hair I had lost. The overall consensus was about 1/3 of my hair has already fallen out. On the bright side, I had forgotten how curly my hair could be. A quick rinse and a light tussle was all that was needed to transform me into a Shirley Temple doppelgänger. (Oh my goodness!) It is my hope that the hair loss will cease (or at least slow dramatically) with the new, shorter ‘do.
Good luck needs no explanation!
Shirley – er, Sophie.
Is it Shirley or Sophie? Nobody seems to know...
When I marched (okay, crawled) into my infusion appointment Friday, I carried with me a two-page outline of side effects that I hoped to have addressed. I was out of it due to a lack of sleep, an over-abundance of pain and the anticipation of another iv. I handed my list to the nurse who took one look at me (ashy white color that I was) and the list (two legal sized pages) and sprinted off to get the doctor. We had an excellent pow-wow with both nurses, the doctor and my family. I’ll just refer to all of us in this blog as the “team” so I can get this typed out with limited confusion (hopefully) to the reader and to myself. What came out of this meeting was an adjustment in strategy and an adjustment in my thinking.
The “team” came up with some excellent strategic shifts which I believe will make taking Ampligen a whole lot easier. The first change is that I have had the infusion rate increased to one hour. The second change is an increase of supportive medications to help me through the challenges that the first months on Ampligen present. The third change is the option to lower the dose of Ampligen to whatever dose is more tolerable and then (maybe) work back up to the 200 mg level. (Hemispherx is very liberal in their dosing protocol. I could drop well below 100 mg and work up from there if I want to. I have chosen to remain at the 200 mg level for now.) The fourth change (which I believe is the most important) is my change in attitude going forward from here.
Rather than trying to be stoic and refuse to swallow the pills I have been prescribed I need to take the pills when I need them. (Novel idea, huh?) I was so afraid of my system becoming dependent upon pills (pain pills especially) that I wasn’t sharing with my family or my doctor just how awful I felt. I am now learning to be open to the idea of medications to treat side effects being used when problems start to arise rather than waiting to be a 10 on the pain scale or being so dehydrated that I can’t function.
So, I am now taking a ppi, a 5-HT3 antiemetic, Tylenol, a strong opioid, a secondary pain medication specifically for migraines, the claritin (which still works quite well as an adjuvant for the bone pain), caffeine for the sleepiness produced by the opioid (I never even drink caffeinated sodas so one can of Coke totally wires me), I have lidocaine patches for those pesky lymph nodes and a rx for a mild diuretic. I may feel like I am a living pharmacy, but I am a comfortable living pharmacy. The next step is to get me to be a walking pharmacy and after that I’ll become a jogging pharmacy. My ultimate goal? To be a runner with no medications. In the meantime, I’ll take the medications that I am supposed to when I’m supposed to take them. And I’ll be glad. And possibly sleepy.
I haven’t been able to find another Ampligen patient who is losing hair like I am. My doctor said I was the first one in the office to ever lose any hair. This is great news for those of you considering Ampligen treatment because it is apparently extremely rare to lose your hair (as are most of my side effects), but it sucks for me. I’m still losing one handful every day. If Ampligen ever makes it into one of those drug-store pill books I think the “rare side effects” paragraph will probably be cut and pasted from this blog. (At least I’ll be famous.)
After research into other drugs similar to Ampligen (like Interferon) I have decided to cut off the majority of my hair in the hopes of sparing the rest of my hair. Long hair falls out faster thanks to the added weight. Since my hair is more than halfway down my back, I will cut off close to seven inches. This will give me a long bob. I also won’t be coloring it, blowing it dry, using heat, using products, washing it often or even brushing it often for the next year. I’m going to look simply awful. On the bright side, I have a decent chance of experiencing a hair color and texture change when it regrows. So, I am hoping (and praying) for a return to my childhood white-blonde locks and a straight texture. Why not dream big? In the meantime I am going to be on the hunt for silk scarves in pretty colors. I need something that says I’m extremely girlie, but don’t mess with me because I will take you down. Maybe pink camouflage?
Sophie
This disease and this medication are both full of surprises. I don’t know if it was because I did so much after infusion number 8, or if I caught a little bug, or if it was for no reason, but infusion number 9 induced a reaction similar to my one and only attempt at the 400 mg dose. I have felt so ill. I have still managed to play with the dogs, although it has been more out of not being able to tell those hopeful brown eyes “not today” than it has been the desire to pitch a ball or frisbee around the yard.
These are my symptoms (at the 200 mg dose):
Lymph node swelling –
I have walnut sized lumps on both wrists, my neck has grown 3″ in diameter with the swelling, my sternum has a lump measuring about half of a medium apple. The other lymph sites are also affected, but not to the extreme that my wrists and chest are.
Pain –
I don’t think I have ever hurt this much for this long. On top of the usual fibro. pain, and now the insane lymph pain, every muscle is screaming with pain and stiffness and every joint hurts to move. The headaches and migraines are intense. The worst pain though is the bone pain. I never knew the inside of bones could hurt. After much Googling, I found that chemo. patients who complain of bone pain can sometimes find relief from bone pain by taking Claritin. Thank heavens the Claritin works. It reduces the bone pain from a 9.5 to about a 5 or 6. I am in about a 7-8 pain range most of the week. I can’t take any NSAIDs because I am mildly allergic to them. All I have is my Claritin and my Tylenol.
Fever–
I usually run at about 97.9 (or lower). However, for the 48 hours after every infusion I am up at 100 and sometimes 101. I soak my sheets every night. I get dehydrated and I just don’t feel like drinking since my throat hurts so much I can barely swallow.
Spine and Neck –
I have been through severe flares before and had my spine and neck hurt, but this feels like the spinal fluid pressure has increased to the point that it is shoving my vertebrae apart. I can’t sleep on my back and sitting hurts. Of course, with the lymph swelling I can’t sleep on my tummy either.
Hair loss –
I am loosing a handful of hair a day. I have been doing this for 3 weeks. I have lost hair at this rate about 7 years ago when I had my worst cfs/me flare ever. I don’t think I will actually go bald since I did not go bald 7 years ago, but my hair still got amazingly thin. I didn’t know that I was going to lose this much of my hair with Ampligen. I would go bald to get better. I just don’t want to.
I am only keeping my head above water because of the support of my family, the support of my friends and my faith. One story of faith that has sustained me greatly over the past month is the story of my Great-great-great grandfather.
He and his wife and two young sons immigrated to the USA from England in March of 1855 . Great grandpa was an avid writer who enjoyed writing in his journal daily. He recorded in his journal that it took six weeks to reach Philadelphia from Liverpool. Great grandpa and family then traveled by train to Pittsburg, then steam boat on the Ohio River to St. Louis. They joined the Richard Ballantyne Company and went to Mormon Grove, near Atchison, Kansas.
There was an outbreak of cholera on the day they arrived and the morning after their arrival Great Grandpa awakened to find his beloved wife had died in the night from cholera and exposure. His two sons were also sick with cholera and he also contracted the disease. After burying his wife early in the morning, he loaded up his wagon and began marching westward again. He walked all day. Late that evening, his younger son succumbed to cholera. He walked the many miles back to his wife’s grave and placed the baby in his wife’s arms. He then returned to the company just in time to begin the next day of walking.
He did not write in his journal for 6 weeks. When he did write again, he wrote two words which have inspired generations of his descendants “Still moving.”
When I feel I can no longer move forward physically or emotionally I remember those words and find the courage to go on.
This Ampligen is giving me a small opportunity to leave a legacy to my descendants and I hope they will remember that I too am “still moving.”
Sophie
My first month on Ampligen is now behind me. I am amazed at how far I have come. I have gone from feeling like I was melded into the sofa cushions to feeling like doing things! Before I started this process I would snap on the tv and leave it on whatever channel it was already on. I did not have the energy to make a decision to change the channel. Now I can channel surf with the best of them. More importantly, I get up every commercial break to do something. I am still stuck in the position of wanting to do far more than I physically can, but I feel like I am on the right path!
Since I last wrote I have done the following:
Thursday: 10 minute aerobic dance workout, wrote in my personal journal, rough-housed with dogs for 10 minutes, made my bed and cleaned my room (wah-hoo!), showered in a HOT shower for 20 minutes. (Water bill be darned!)
Friday: Infusion day, 5 minutes of spontaneous and spastic dancing, went to the library and spent 40 minutes wandering through the isles. Checked out 19 books. Played with dogs for 40 minutes – fetch, frisbee, and wrestling. Read lots.
Saturday: Walked dogs at park for 15 minutes. Talked with friend for one hour. Talked with sister for one hour. Cleaned out the car (including vacuuming and windows). Played 5 minutes with dogs. Showered and straightened hair. (My hair is halfway to my waist, it is very thick and exceptionally curly so straightening it is like competing in a hair triathlon.) Read lots.
Sunday: Went to church made it through 1/2 of service (neglected to take Tylenol before – dumb idea!) Played fetch with dog for 5 minutes. Read non-stop.
Monday: Finished 18 of the books. Went to the store for 40 minutes – and the day is not done yet!
There are so many things I want to see and do. I find it so hard to pace myself. The activity log book is helping though.
The side effects from infusion number 8 were slightly less intense. The fever didn’t last more than 12 hours. The muscle aches were not as bad. The bone pain, the lymph node swelling (and accompanying lymph pain) as well as the sore throat remained. The tired, but wired side effect is showing up more and more too.
I think the biggest challenge I am facing right now is wanting to be instantly better and knowing that it is going to take time. I am also mentally wired from the medication which doesn’t help the whole “working on being patient” idea.
Happy 4th!!!
Sophie
theglassmountain 