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**A quick note about the title of this blog. While I no longer meet the official criteria for defining CFS/ME because my fatigue can be explained by another factor other than ME – I believe that there is likely some overlap of symptoms, features and possibly the etiology of autoimmune and neuroimmune diseases that is not yet fully understood. Therefore, I will continue to seek help from my ME doctor as well as continued treatments for ME for the foreseeable future. After all, I still feel awful no matter what ICD-9 codes are attached to my name.**
As many of you are aware I have been following the trail of a possible rheumatic illness for the past 21 years. I have been more especially on the hunt since exiting the Ampligen 511 Trial earlier this year when my end of study labs revealed a positive ANA and also several other abnormal autoantibodies. After a plethora of lab draws and subsequent conformational labs I can now say that I do indeed have an autoimmune disease. Probably. Welcome to the wonderful world of autoimmune diseases.
My appointment with the new rheumatologist was a smashing success. The waiting room time was minimal (under 30 minutes) and he spent two hours and 15 minutes with me discussing my entire medical history. We covered every scrap of information that was faxed over by my ME doctor and all the interlinked computerized records of the past decade. He asked every question I was hoping he would ask; he addressed every question I threw at him with competence and proficiency; he ordered every additional test I was hoping for; and as icing on the proverbial cake he was really super-duper nice. Add to all that the fact that we have mutual friends and it was a simply dreamy appointment. I hoped and prayed that the appointment would go well, but that appointment was above and beyond anything I was hoping for.
The new rheumatologist has given me a new temporary label of UCTD (Undifferentiated Connective Tissue Disease). I expect to remain under the UCTD umbrella for at least the next month. The new rheumatologist explained yesterday he needed an ICD-9 code that would allow him to run additional tests without having to get prior authorizations for every little detail. So for the next month I will again have all the prior lab tests drawn (fifth time). I will also undergo a series of really fun-sounding exams to determine if I have sustained any organ damage. If there is organ damage I can expect further testing to follow to figure out the extent thereof. My next several weeks have just become booked solid. Once all the tests are in the new rheumatologist (hereafter refered to as Mr. Rheumy because that name is infinitely cooler than ‘the new rheumatologist’) will give me a definitive diagnosis, prognosis etc.
Mr. Rheumy did feel strongly that I do have a real (ie: not drug induced) autoimmune disease. Due to this he has put me on Plaquenil (HydroxyChloroQuine / HCQ), Celebrex and Medrol. (I politely refused the Medrol since steroids and I do not mix. He explained that he never forces anyone to take steroids unless the steroids are needed to save the organs. That works for me.) I am seeing Mr. Rheumy next on July 3rd.
In the meantime I literally have places to go and technicians to see.
It is strange to relate the title of this blog ‘Saying Goodbye to CFS’ made me sad. I have been under the umbrella of the disease-of-a-thousand-names since I was seven. When I speak with fellow CFS/ME sufferers there is a camaraderie, an understanding and an ease that I have come to rely on.
When you say “brain fog,” I understand you.
When I say, “I am so tired!” you know what I mean.
The hardest part for me (so far – give me time and I am sure I can come up with something harder to deal with) has been wondering how long have I been harboring an autoimmune disease? And more to the point, I suppose, what would life have been like if I had found it at age 8? Or 12? Or 17? Or, or, or? Now it may be that this autoimmune disease was smouldering in the background and it was just waiting to spring to life. However, if that is the case, why do I have the same symptoms and problems that I did back in 1989? Why do I feel exactly the same as I did when I was eight? Maybe CFS/ME really is autoimmune. Who knows? I sure don’t.
So far the only consolation to a life lost I have been able to come up with is this – and I ask you to read the following with an open mind.
Don’t stop looking once you have an answer. Keep looking for new treatments and new avenues of disease. I fit the ICC criteria until yesterday when I suddenly didn’t anymore. If one person can find a road to better health because they took a second look or a third look or a 50th look at their disease then what I have lived through will be worth it.
Why, you may ask, am I asking you to take another look at your disease when I know you have fought for so long to get a diagnosis? Why when you have in your possession that truly precious ICD-9 code that means you are not crazy, or an attention seeker or (my personal favorite) a drug-seeker? Why do I ask you to reevaluate the fact that you have a neuroimmune illness that is debilitating even on the best of days? Because at 4:00 am this morning I woke up and wondered “what if?”
I have had the best medical care available in the USA. The majority of this care over the past two decades has been private pay, with top doctors in every specialty. I have had more tests run than just about everyone I know. I have had the ANA screening and ANA panel so often I am surprised that the lab technicians don’t recognize my blood on sight. I have had spinal taps, MRIs, CTs, pulmonary workups, cardiology work ups, neurology work ups, endocrinology workups, gastroenterology workups and every other specialty you can think of a number of times over the past two decades. Added to this is the fact that the team of doctors who have been looking after me genuinely care about what happens to me because they good doctors. They are good people. And they want me to get better. If the best specialists in the country couldn’t find an autoimmune disease in me for 21 years, isn’t it just possible that I am not the only one?
Take a second look at your diagnosis. If not for yourself, then for me.
Sophie
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 was a little afraid that after last week I might crash, but the opposite has happened. Out of the past 14 days I have managed to walk the dogs eight days. 15 to 20 minutes at a moderate pace may not seem like I am setting the world on fire, but just a few weeks ago I almost never left my house. It is a miracle!
I have been able to shop, clean the house a bit, have company over and still not feel like I am going to die of pain and fatigue. I cannot do all this in one day of course, but just to be even a little more functional with less pain was my original goal and I have already exceeded that.
Side effects are still accompanying me on my journey and the latest new one is really bizarre. About two weeks ago I began to get really icy limbs and the front of my face would also really drop in temperature. I am used to the chilly limbs as part of the disease, but this has been insane. I do not ever recall getting this cold before – and I fell into an icy lake once (long story). My limbs and face get so cold I can’t move the muscles. Even tepid water feels like it is burning my flesh off. Meanwhile my core burns with a fairly severe fever. As the days passed I began to have what felt like panic / aggression attacks. I finally realized the cause of these bizarre episodes last night. My adrenal glands are coming back to life! I seem to have a major adrenaline surge 3-5 times per day and following those my sympathetic nervous system constricts the small blood vessels in my skin. As wonderful as it is to have my adrenal systems functioning again I am hoping that they get normal soon. I am not an adrenaline junkie!
I still need to keep on a regulated schedule of medications too manage the other side effects, but the good news is if I keep myself in check I feel like I can survive my infusions.
I spent time reading through my personal journal the other day. Although a lot of stuff made it into my bog it is nothing compared to the rollercoaster in my personal journal. I would never have been able to survive this treatment to this point without all the prayers, love and technical support of my family friends and even strangers. I just wanted to say thank you to you all. From those of you who fed my family meals whose ingredients altered almost hourly based on my stomach’s shifting needs to those of you who have called, written and sent messages of support I thank you. You have enabled this journey to succeed thus far and one day, some how I am going to pay it forward.
Sophie
This has been a banner week. Monday was a very busy day. I was up at 7 am and aside from an hour and a half nap I continued on with a rather busy schedule until 9 pm. Included in Monday’s activity log were three shopping trips, two sit down restaurant meals and a doctor’s appointment. Tuesday I breezed through my infusion and came home, walked the dogs, did a load of laundry, made soup, sent out emails, made several phone calls and did paper work . Wednesday I began prepping for a dinner party. Thursday I finished making dinner from scratch for five (it was delicious by the way). We enjoyed a nice evening of games and conversation. Friday I went through another infusion, and then walked the dogs, went to the library, sent a few emails, and then still had the energy to whip up some spaghetti with garlic bread. For a person who spent the last several years struggling to pour her own cereal this week has been truly miraculous.
Several people have made the assumption that I must be deliriously happy after this week. The fact is – I’m not. I am not any happier than I already was. I am just as happy and as joyful to be alive as I was years ago. I strive everyday to be a happy person – Ampligen with its attendant ups and downs has not changed that. When I was young I spent quite a bit of time wishing I had something else to deal with besides this disease. My wish was granted. I developed other problems and still retained this disease. My mother, cheerfully suggested that though circumstances might not ever change for me I could move forward with life in small ways. I could be happy even when I felt like I was on my deathbed. Naturally, I laughed at the absurdity of her ideas. However, mom was right. It took me years of practise and many, many failures, but I finally learned how to be happy despite my circumstances.
It has been many, many years since I first heard this story. I extend my apologies to those of you more familiar with the origins and telling of this story for not having a better memory of such a gem.
A long time ago there was a small, poor village in a valley ringed by mountains. The people of the little village in the valley worked very hard and spent long hours trying to eek a living out of the dry, arid ground. One day a stranger came into the valley. He was dressed in beautiful clothes and fine shoes. The stranger saw the calloused hands and tired faces of the people and began to laugh at them.
“Why do you work so hard? There is a wishing tree just on the other side of the mountain. You could all have everything you want without all this hard labor! I have travelled much through the land and know many villages that are much grander than yours. My village is not very far from here, yet we have new, paved roads and beautiful schools and fine houses. ”
The man laughed and laughed. The more he laughed the more ashamed some of the villagers became. They saw their thatched huts and ragged clothes and shoeless children.
The stranger left the little valley and his laughter echoed through the hills as he made his way to his fine village with paved roads and beautiful schools and fine houses. That same evening a village council was called. It was finally decided that in the morning they would all leave the valley to find the wishing tree.
Before dawn the next morning, the villagers assembled and began to climb the mountains and narrow passes that lead out of the valley. Among those unable to keep up with the main village group was a young boy with a crippled leg. He crawled and hopped and dragged his body over the rough rocks. All he could think of was getting to that wishing tree. He knew what he would wish for. He would wish that his crippled leg would be healed and then he would be happy. It took the boy many hours to climb up and down the mountain pass.
Meanwhile, the villagers had reached the wishing tree. There was a tumbled down hut a short distance from the tree and an old woman sitting outside weaving. The villagers were concerned that this might be her wishing tree, but she said that the wishing tree did not belong to anyone in particular. She warned them though, that the wishing tree was dangerous. The villagers ignored the old woman’s warnings. The villagers circled the tree and began to wish. Every wish was instantly granted.
The crippled boy arrived at the tree and ignored the old woman completely. He tried to find an empty space so that he could squeeze in and wish on The wishing tree. There was none. Despondent, the boy began to sob. After a good, long cry the boy picked himself up and finally noticed the old woman. He tearfully went towards her and began to explain his situation. She held up her hand and bade him be silent.
“I warned the people you now see standing around the tree to not wish upon it, but they did not listen to me. You should count yourself blessed that you are not among them. They will not be happy. Watch them and tell me what you see.”
The crippled boy watched. The children wished for toys and candy. Every wish was granted, but it also came with its opposite. So, while the children wished for toys to amuse themselves they also experienced profound boredom. The candy gave them terrible stomach-aches. Yet, they wished for bigger toys and better candy. This rewarded them with more boredom and worse stomach-aches.
The adults did not fare much better. They wished for wealth and beauty and power. They received those things, but they also received greed and jealousy and anger.
The crippled boy looked on as wish after wish brought more and more misery to the people who were once happy.
Turning to face the old woman, he asked, “What am I to do?”
She responded, “They have made their choice. What will you choose?”
The boy thought. Finally in a quiet voice he said, “I was happy before the stranger came to my village. I will be happy still.”
The old woman smiled and sent the boy off to work in her fields. The work was hard and hot. The days were long. At the close of each day the boy returned to the old woman’s hut and they shared a simple meal. Many years passed and though the old woman never grew any older, the villagers surrounding the tree grew up, grew old and died utterly miserable surrounded by everything they ever wished for.
Travellers who passed by the strange scene noted the profound sorrow of those who ringed the tree and compared it to the profound joy of the crippled boy – now grown into a crippled man. The crippled man told and retold the story of his village. He always ended by saying what he had learned from the old woman. That happiness comes from within. “I was happy before the stranger came to my village. I am happy still.”
I was happy before the Ampligen and I am happy still.
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
I am going to make a quickie entry for this week because I rambled on so yesterday. I am certainly on the Ampligen roller coaster. A day of feeling good is usually followed by a day of feeling awful. I think I am starting to get the hang of it though. What has impressed me most about this week has been that I am able to stave off some of the pain and usual PEM symptoms if I will lie down and take a nap. Don’t get me wrong – I still feel sick, but it isn’t as awful as it used to be.
This week I was either flat-out (a few times from just the Ampligen itself) or I was up and doing things. I played with the dogs fairly consistently this week (even the vet has noticed that our Labrador is getting trimmer!) I did a fair amount of emailing and conversing with friends and family, I went to two different places (the library and the grocery store) and I was able to sit up at the kitchen table more to do my computer work (as opposed to lying in bed).
I am actually cooking a few things. I have made bread and soup. I roasted some apples in the oven. Not huge things, but considering that for a while I stayed away from the kitchen entirely since I had such a case of brain and body fog that I was a hazard to myself . (It was not one of my finer moments to reach into a heated oven and grab a pan without a hot pad.)
I am loosing less hair (only a small handful every day). I still have bone pain, but it is usually for only the day following the infusion. I still get the other assorted “Ampligen symptoms.” However they are slowly decreasing in intensity. Except for the nausea. I am not sure that will ever stop completely.
My classical music routine has helped me to focus better. That in combination with the Ampligen. (Maybe it is all Ampligen – I just really want some of the improvements to be because I made an effort. Sadly, that may not be the case though.) At any rate I am focusing better.
The few minutes of exercise a few times a day seems to be going well. I have managed to do this six out of the past seven days.
That is it for now. (A collective sigh of relief just came from my family since they are compelled to read this blog while the rest of you have a choice.)
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
theglassmountain 