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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

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I have been doing quite a lot recently. Except, of course, for keeping up this blog as well as I had hoped. In the past three weeks I have been out and about for hours at a time. There have only been two days in the past three weeks that I have not been out to at least one place. I am adding in some variety to locations too. I have started looking for a car. (Dodging the used car salesmen effectively is excellent cardiovascular exercise.) I have also been to a few Christmas parties, and a birthday party, taken the dogs to their favorite pet stores and generally have been just living a life of relative freedom compared to last June.

My new favorite activity is cleaning. I love cleaning simply because I can do it now. While Cinderella and Snow White just wanted to quit keeping house I am excited to begin. Cleaning and doing laundry are the happily ever after in my fairly tale.

I raised my dose from 50 mg to 75 mg last Friday. I have had an increase of side effects, but as long as I keep up with my supportive medications (Tylenol, Claritin etc.) I can tolerate the side effects. I raised the dose because the side effects at 50 mg were abating.   

Several people have asked me recently if the opportunity to take Ampligen and the progress I have since made has given me hope for my future. They have also asked if I am worried about a relapse after Ampligen treatment ends. I would respond that if my hope was dependent upon Ampligen I could not have survived the past 21 years.

Hope is a changeable word. Nowadays when people ‘hope’ for something they really mean they ‘wish’ for something. In biblical times the word hope actually meant something entirely different.  It meant to feel deeply the certain truth of something that had not yet occurred because of faith in God.

My personal faith in God stems from the belief that God is the father of my spirit, and though for 21 years (and counting) my body does not work nearly as well as the bodies of many people on earth, I still mean a great deal to my Heavenly Father. 

As proof that the circumstances of our lives do not reflect the actuality of our value to God, he sent his son, Jesus Christ, into the world to grow from boy to man and to suffer more than any human ever could. Jesus not only paid for the sins of mankind, he also paid for the inadequacies created by social, economic and yes, even physical, deficits. The atonement was and is God’s way of eventually ‘balancing his books.’   

The prophet Isaiah said, “Surely he hath bourne our griefs and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted. But he was wounded for our transgressions, he was bruised for our iniquities: the chastisement of our peace was upon him; and with his stripes we are healed.”  

(KJV Isaiah 53:4-5)  

If Jesus, being perfect, could be so smitten and abused by the world and yet remain beloved of God then so indeed am I. And so are you.

One of my favorite quotes reads thus, “This is a paradox of man: compared to God, man is nothing; yet we are everything to God.”

(You Matter to Him, President Dieter F. Uchtdorf, Ensign November 2011 page 20.)  

This is why I have hope. I matter to God. And should God choose to heal me I will be grateful. Should God choose to let me live in sickness all the days of my life I will still be grateful. Because it is not health or sickness I am grateful for. It is love. I am grateful for the love of our Heavenly Father. Hope isn’t about wishing for things. Hope is about feeling joyful in the knowledge that no matter what happens to you your life will turn out well and that everything will come out even in the end.  

Merry Christmas and much love,

Sophie

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
 
 

After the huge number of pages of personal, financial and medical data Hemispherx had me fill out the company wanted one more thing. I got a phone call yesterday from them. Hemispherx wanted to know if I had gained or lost more than 5 pounds since I first became ill. If they had bothered to read the patient information they would have known that I was a youngster when I became ill. Unless I was an anomaly, wouldn’t you assume that I had gained more than five pounds in over 20 years?
These are the people who are going to be producing chemicals that are going to go into me. Inspires confidence, huh?

   The actual name of my disease (according to the World Health Organization) is Chronic Fatigue Immune Dysfunction Syndrome / Myalgic Encephalomyelitis (ME). Most people call it ME or me/cfs for short. The W.H.O. classifies ME as “a disease of the central nervous system.” Many people are diagnosed with Chronic Fatigue Syndrome (ME) who do not actually have it. There are people who are diagnosed with Chronic Fatigue (ME) and get better a few years later and who lead fairly normal lives while they are “ill.” Normal is defined here as being able to go to work or school like a healthy person would and is able to take care of personal and home needs. These people most likely had a viral infection or some other problem and not ME.    

    People who have ME have the equivalent physical impairments of someone with end-stage AIDS combined with chemotherapy, according to Dr. Loveless, a leading ME / AIDS researcher. Another doctor, Dr. Klimas, has often said that if she had to choose between having AIDS and ME she would choose AIDS. Why? Because AIDS patients have medications, they live fairly normal lives and they live better lives than people who have ME.

    You should know that ME is not (I repeat) NOT contagious. In order to contract ME you must have a genetic code with certain flawed bio-markers, and then be exposed to a triggering virus (like Epstein-Barr or possibly XMRV). Simply stated – I cannot make you sick.  

    The following are some of the many symptoms of ME:

  • Severe fatigue (that is not helped by any amount of rest)
  • Extreme muscle and joint pain (which is not helped by medication)
  • Vision loss
  • Heart problems – arrhythmias, fainting, and heart disease
  • Chronic cough with bronchitis and pneumonia fairly often
  • Swollen & painful lymph nodes
  • Severe headaches and migraines (occurring most often in women)
  • Sore throat
  • Fever (usually for most days of the week)  

None of the aforementioned symptoms are ever helped by rest or medication. There are a fair number of people who claim that such and such helped them. While I am happy for them it is, again, unlikely that they ever had ME to begin with. There are no treatments for ME. There is currently no cure and no FDA approved treatments.

3% of ME patients will die from this disease. Cancer, however is the leading cause of death for ME patients. Many ME patients do not live past the age of 55. The bottom line is ME patients don’t live long or well.

            I have been given the opportunity to participate in a clinical trial of the first medication that is seeking FDA approval for the treatment of ME. Ampligen is administered twice a week via an IV for at least one year. The side effects vary from person to person. A few people have little or no side-effects while most others have exhibited symptoms comparable to Chemotherapy.

I would like to thank you all for your support through this next year as I seek treatment for my ME. Please keep me in your thoughts and prayers as I commence this difficult and dangerous journey.

Ever since I was a small child I have loved the fairy tale The Black Bull of Norway. In the story a widow woman has three daughters. As each daughter comes of age she requests of her mother to bake a cake for the fortune-teller. The two eldest daughters are thrilled when the fortune-teller leads them to handsome, wealthy princes. Certain of her good fortune, the third daughter takes a cake to the fortune-teller who tells the youngest that her fate lies with a great, black bull. The bull carries the girl into a valley made of glass. The bull then tells her that he must go and fight Satan. If the sky turns red it means that Satan has won the battle, but if it turns blue it means the bull has won. The bull tells her she must remain perfectly still or he will never be able to find her again.  Having conveyed this warning the bull leaves the glass valley to fight Satan. Blue and red push and tear across the sky for many hours until at last the sky turns a brilliant blue. The bull has won. In her joy, the girl momentarily forgets the bull’s warning and moves one foot ever so slightly. Realizing her mistake the girl begins to weep. She then becomes the one to quest for the bull which she loves.  To her utter despair, though, she cannot leave the valley. The valley is ringed by mountains made of glass and she cannot climb them. She becomes the servant of a blacksmith who promises to make her shoes of iron if she serves him for seven years. It is at this point I will leave off telling the rest of the adventure in this story and continue with another kind of adventure.

I have been (and am currently in) a glass valley of my own. I have been in this place since I was seven. I am now 27. My Glass Mountain is called Myalgic Encephalomyelitis (ME). Classified by the WHO as a ‘disease of the central nervous system’ ME is more commonly refered to in the USA as Chronic Fatigue Syndrome – a name which I find ridiculous. I am neither chronically tired nor am I surrounded by buff men in camouflage (although I wouldn’t mind being the latter). I am instead impaired with almost the same intensity of someone who has end-stage AIDS coupled with chemotherapy treatments. In my next post I will delve deeper into what ME is and what ME is not.

The reason I am starting this blog is that I want to keep friends and family apprised of my condition. I am fortunate because very soon I will be able to participate in a trial of Ampligen. Ampligen is the first drug seeking FDA approval for the treatment of ME. I know that this medication is controversial and expensive. I know many, many people want to try this medication and because of cost or current living location cannot. I am hoping that by contributing my body to be tested that this medication may indeed be approved by the FDA. Or, conversely, if I react badly then everyone will know that too. I have been ‘serving the blacksmith’ now for 20 years. I am desperate to live. One way or another I will climb my Glass Mountain and I will finally, finally be free.

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