I am about to become a citizen of the United States. I was born and raised in communist East Germany where travel was possible only to the countries of the Eastern Bloc. Even some of those countries were off limits for East Germans. When the wall came down, I was 18 years old. Up until then, I couldn’t visit, or be in touch with, my relatives in West Germany: my uncle, my cousins, my second cousins, my cousins once removed, my great aunts and uncles. I didn’t expect to ever be able to. Some people tried to climb over the wall, make their way through Check Point Charlie in a secret, custom-made compartment of a car, swim across border rivers, sneak across the Baltic Sea via a small inflatable boat or an air mattress during a foggy night or fly across the border in a hot air balloon. Few actually made it. Many were shot by border guards or automatic machine guns, killed by mines or drowned during their attempts. Others were incarcerated for trying to escape or merely planning to try. I was enough of a realist to be resigned to the fact that East Germany was going to be it for me, for the rest of my life.
This all changed in 1989 when the iron curtain was lifted due to the bravery of some East Germans while most of East Germany watched in amazement, as did the rest of the world. The footage of those events still gives me goose bumps and tears. Over night, I had gotten permission to be an individual instead of a robot programmed to comply in order to avoid being decommissioned. I didn’t have to censor myself anymore, I didn’t have to regurgitate communist propaganda, I didn’t have to worry that my classmates would turn me in for watching West German TV, I didn’t have to let teachers emotionally and socially abuse me for having gone to church once when I was in second grade, I didn’t have to worry about what was recorded in my Stasi (the ever-present East German secret service) file based on people in my life who were “unofficial informants” (about 200,000 people in a country with a population of 18 million people) and whether it would keep me from getting into medical school. (The thought of having wanted to be a medical doctor for most of my childhood and adolescent years is more ironic than I want to get into here. My fellow ME patients will understand why.) I didn’t grasp this new-found freedom right away, but I slowly started to realize that it’s ok to stand up for myself and for others, to speak my mind, to do what is right instead of what is safe. I started to trust that, in the democracy of first a reformed East Germany and later a united Germany, I would not have to jeopardize my civil rights for my values anymore. And I was free to live where I chose.
Moving to the US more than 13 years ago was a dream come true because for more than half of my life at that point, I thought I could never even be a tourist here, let alone a resident. I felt emotionally freer here than I had in the rigid Germany. And I was comforted by the fact that the US had a strong civil-rights tradition. Certainly, the thought that I might be separated from my family because of morally wrong actions by the US government would have seemed absurd had it occurred to me at the time. Being on the brink of becoming a US citizen is another goose-bumps milestone in my life. That is not to say that I am not mortified that, in this country, a not insignificant number of people is in favor of—actually they are cheering for—letting uninsured people die of a treatable medical condition. Or that every time I turn on the news, I don’t worry about hearing of another mass shooting. Not all is good in the Land of the Free, but for me personally, the pros have far outweighed the cons over the years. I feel very grateful for the opportunities I’ve been given here.
A lot of these opportunities vanished when I got sick with ME 6.5 years ago. Dr. Friedman recently described having ME as “having the worst flu of your life for the rest of your life.” It’s actually worse than that because, in addition to the flu-like symptoms, patients experience many serious symptoms that one does not get with the flu. Dr. Kogelnik said a couple of months ago that he has not seen a sicker patient population than ME patients, except in the ICU. If you are physician reading this who is unfamiliar with this disease (basically every physician in this country, except for maybe two or three dozen or so doctors) and if you are thinking that Dr. Friedman or Dr. Kogelnik were exaggerating because you still believe what they taught you in medical school, let me tell you that you have no clue. None! Remember when the medical “wisdom” not that long ago was that Helicobacter pylori doesn’t cause stomach ulcers? Given how much the research differs from medical-school teachings on ME, it is your responsibility to educate yourself at least enough to be able to recognize this disease, stop harming patients by prescribing the wrong treatment and refer them to those few doctors who do know this disease very well. Remember the oath you took? Did you mean it or was this just a formality on your path to adding those coveted two letters after your last name that give you super powers—in your mind at least? In case you are wondering, the level of cynicism I feel for many doctors is directly proportionate to the amount of abuse I and my fellow patients have taken from physicians over the years.
I am completely unable to work and for the most part, I am unable to travel, socialize, exercise, do my fair share of housework or play with my daughter, Aimee. I have talked about my limitations—and what happens if I try to ignore them—in more detail in the past. They are worse now than they were then. But speaking of Aimee, she is a delightful, beautiful and smart little 2 years old girl. My husband, Ed, and I endured three grueling IVFs and beat 2% odds to have her and yet, I only see her in person for a weekend about every 3 weeks. Making the 4-hour trip more often sets me back too much. We video chat every night and it has helped to keep our connection, but those “Mami, come home!” moments are heart-wrenching.
Aimee is the perfect blend of Ed and me, which is a relief after conceiving in a lab. She has my eyes and my hair. Her nose is a combination of Ed’s and my nose. Her mouth seems to be still deciding whom it takes after. Aimee has Ed’s long legs and my strong will. She jabbers all the time. That one is mostly Ed. She loves shoes. I’ve got to believe that that one is me. Aimee loves her gymnastics classes, which are basically a safe place to climb and jump. She enjoys kicking and throwing the ball and pushing around her “Pueppchen” (little doll) in her baby stroller. But her favorite thing to do is probably meeting up with her many friends at the park. She is more comfortable with boys than girls. She got this neither from Ed nor from me. She has a hard time eating solid food for some reason. She definitely didn’t get that from her parents. She has allergies to something. To what we are not totally sure of, but it doesn’t seem to slow her down too much. She loves books and has not caught on yet to the fact that the man with the yellow hat seems a little creepy. She focuses mostly on George. She can say things like, “Beethoven” (don’t ask!) or “dinosaur” but she can’t pronounce our nanny’s name, Monika. So, for now, Monika is “market” and luckily, Monika is not offended. Imagine the desperation of a mother to decide to miss out on pretty much all of this with her only child.
The reason for my physical separation from Aimee and Ed is that I moved to Incline Village, NV, in order to receive the immune-modulating drug Ampligen. For most patients, receiving Ampligen is a long-term commitment. Once patients get off the drug, they typically relapse. Not always and not right away, but eventually. It also takes months, in many cases, to start seeing any results. But better to spend those months working on a chance of a life than to just watch this progressive disease eat up one’s body more and more without doing anything. After nearly 5 months, I feel like I am starting to respond to Ampligen. Had I begun Ampligen therapy earlier in my illness, I would most likely have responded much sooner and potentially even have been cured. The chances of Ampligen being effective diminish with each year of being sick. But none of the many doctors I had seen over the years even mentioned Ampligen, most likely because they never heard of it. So, I didn’t know the drug existed until I started going to the Bay Area Support Group meetings last year.
Ampligen is administered via infusion twice a week. It is available in only 5 places in the country. Besides Incline Village, those places are New York City, Salt Lake City, Miami and North Carolina. The reason for the limited availability is that it is an experimental drug, meaning that it is not FDA approved. Since the approval process to become the site for an experimental drug is very involved, it is not something many doctors have the time or patience for. Without FDA approval, insurance companies usually don’t pay for the drug. Because of the drug’s high price and the limited availability, very few patients are in a position to receive it. Most can’t afford paying for the drug and infusion costs alone: depending on the dose, between about $15,000 and $30,000 per year. Who can afford that plus the moving costs and having their partner give up their job to move with them or, alternatively, pay for the costs of a second home at an Ampligen location? And even if one can afford a second home, how many people can tolerate leaving their family behind? The answer is: There are less than 50 people currently on Ampligen. This is despite the fact that it has been proven to be extremely effective in a sub-group of ME patients, a patient population that has no other approved treatment because the government spends more money on hay fever than on this debilitating neuro-immune disease that affects at least a million people in this country alone. Ampligen has very few side effects and is amazingly safe. I had some negative reactions in the beginning, but after adjusting the dose and the infusion rate, I am basically side-effect free. Since Ampligen first was used in ME patients in 1988, many drugs with much more serious side effects than Ampligen have been approved for conditions less serious than ME.
So, why is Ampligen not FDA approved 24 years later? Because the FDA, and other government agencies, such as the CDC and the NIH, have, over nearly three decades, taken the unfounded and preposterous position that ME is a non-serious, psychological illness, which exists merely in patients’ heads and which only requires exercise and psychotherapy to be cured. Of course, this has been disproven thousands of times. ME patients are often sicker than MS or AIDS patients. Many biomarkers prove that. Exercise—if prescribed in the same way as it is for people without ME—makes us sicker, often significantly, sometimes permanently. Exercise for us is doing laundry, emptying the dishwasher, going grocery shopping. Many of us are at least at one point or another, if not at all times, unable to do those and many other things without a symptom flare-up. Filling up our fridge or having clean sheets might result in a stint in bed for days. For some people, those activities are impossible to do altogether. Imagine what happened if we tried to go to the gym! And talking to a therapist doesn’t help us more than it does other chronically ill patients. But I guess government egos and the fear of the embarrassment that would come with admitting that a large and very sick patient group has been neglected and thrown to the wolves by government agencies (and as a result, by the medical and scientific establishment) for that long is a powerful motivator to keep the status quo. Plus, the health and disability insurance lobby is a very powerful one. Insurance companies stand to lose billions if ME were given the attention and classification by the government it deserves. Never mind that not doing so is tantamount to aiding and abetting the crippling of lives of millions and their families. Keeping children from having their parents raise them and keeping parents from seeing their children grow up is just one manifestation of this crime.
Others have described living with ME as dying a slow and agonizing death. Some people don’t have the strength to hang on any longer because of the relentless nature of the many and severe symptoms, which make getting through the day feel like a marathon for patients who can hardly walk a block. Add to that the ridicule, abuse and stigma, how does one go on without any hope for a treatment during one’s lifetime? Nobody is keeping track of the number of suicides in this disease. How convenient! But we do know that it’s high because we all have lost friends to suicide. Not only is the government not providing anywhere near adequate amounts of research money for ME (MS research for, e.g., gets funded about 30 times more than ME research despite the fact that there are a lot less MS than ME patients and they are often more functional than ME patients), it is also not approving the one drug that we know works for patients with a certain biomarker profile. Don’t kid yourself, FDA. Making the very deliberate and unsupportable decision not to approve Ampligen kills people! Quite directly by withholding an effective drug and indirectly by quashing the hope.
When Aimee gets silly, she sometimes chants, “Mami, Mami, Mami, Mami, Mami …” Like she is rooting for me. For the last few months, I mostly heard this via my laptop. So, when will I be able to be a meaningful part of my daughter’s life again? That depends solely on the FDA finally doing the right thing by approving Ampligen. I am not holding my breath. I don’t say this lightly, but this very much feels like East Germany all over again. This time, I am not separated from my family by a wall, but by an irresponsible, arrogant and cruel government agency.
This broke my heart. I’m so sorry you have to go through all this. xo
Thanks for reading, Luanne! Hugs!
Amp liven made me 70% better after a year of infusions in Charlotte. I ran out of money and went back home to Houston Jan. 21, 2012. I was going to go back to work but 8 weeks later or 16 infusions I relapsed and await SSDI hearing March 14 in Charlotte. There are 12 judges in Charlotte. Three of them you have no chance from their approval statistics. The remaining nine are 50/50 like Nero thumbs up or down. Dr. Lapp, Dr. Salvatore here in Houston our only CFS specialist diagnosed me. Dr. Lapp the CFS pioneer diagnosed me with CFS but SOCIAL SECURITY DOCTORS opinions are all that counts. One judge averages 6 minute hearings. We spent $50,000 in savings and sold my truck to participate in Ampligen trial. I’m a trucker locally making $35,000 with weekends off home by six every night. Who in the hell would do that and try and scam social security for a grand a month. I feel like I’ve done something wrong having to go to court. Why send all my medical records from specialists who have ruled out every possible cause of my symptoms and diagnose me with CFS? It’s been over two years waiting for this hearing and its a coin flip for approval even with all the medical evidence. For a whopping grand a month! I’m 44 and a veteran who had the privlidge to fight for my country! Now after paying into the system my whole life I may not see a dime because our lifespan is 56 years with CFS. The government isn’t stupid they can save a lot of money denying my claim and keep every dime I’ve paid into the system. All you are is a number in this country and our government has turned it’s back on us for 3 generations. I love my country but I don’t love what it’s doing to a million Americans suffering from this haneous disease. I can’t wait to have the judge cast his eyes on me after all this and the infuriation I cannot show or I’ll be denied on the spot. It’s a joke, on a scale of one to ten what is you’re fatigue? 10 oh he’s just laying it on thick 3 you’re not sick denied. If my Doctor’s letters of my condition are not enough then what the hell do you think they care what I say? God Bless all CFS patients!
Very good, thorough, passionate post as always. I’ve been wondering how you were doing and checking in to see if you had surfaced yet. It sounds like Ampligen is beginning to make a difference. I hope so for your and your family’s sake. Your daughter, Aimee, is absolutely adorable. I would feel so horrible if I were in your shoes, missing my child. However, you have Skype so you can see her and she can see you daily, but it must be wrenching. Her chanting “Mami” is almost like a protest demonstration to the FDA, CDC, NIH, etc. I wish that if her appeals would move these government officials to do something instead of having inertia.
There are some developments going on with Ampligen. I believe they have submitted more studies to the FDA and a decision is supposed to be made next year.
If the FDA approves it, I would hope that insurance companies, Medicare and Medicaid would cover it, as its cost is so prohibitive. That will be another battle if it’s accepted but not covered by these insurances.
What you say about ME/CFS is so true, all of it. I walked 4 blocks to eat dinner with a friend nearby, was out for 2 1/2 hours, walked home. Then sat here as hours went by and my body reacted as if I’d been on a 10-mile marathon. Now I have muscle pain everywhere and it’s very hard to sit up and to type.
In the interim since your last post, my 95-year-old mother passed away. She was in assisted living four hours away and I couldn’t travel to see her. And I’m afraid I couldn’t be too involved because it stressed me out so much my symptoms came out full-force. Now dealing with so much is going to take months, as I don’t have the stamina to move faster or do more. I have boxes of her pottery, books,and so much more but I haven’t been able to deal with it and it’ll just be here.
It would be good for all ME/CFS sufferers to have access to Ampligen, although from what you said, it probably won’t help those of us who’ve had this disease for many years.
Only one thing: I do believe all diseases should be researched and given adequate funding, and not compete for funds. I knew a young man of 26 who died after having MS for one year, and another woman whose spouse left when she was diagnosed with MS. He didn’t want to take care of a sick partner. So I’d say Ampligen should be available and paid for and so should all medications for ME/CFS and other diseases and all illnesses should be fully funded for research. I can think of a lot of other areas where funds could be cut, like weapons and war, but I’d say not human needs. Thousands of people in states which are cutting medical costs have been put on waiting lists for HIV/AIDS drugs, and I just read that some states are cutting the waiting lists now. I’d like to see everyone have the health care they need, including medications.
I’m very glad you’re seeing some positive signs from the Ampligen. I hope that you can return to your family and somehow Ampligen can be available. Maybe something good will happen in 2013.
Maybe people have to deluge the FDA with emails, letters, calls, tweets, etc. and put more pressure on them. It can’t hurt.
Best wishes for your health and the happiness of Aimee, too.
OMG, Kathy! I am so sorry about your Mom. It sounded like it wasn’t unexpected, but when one’s mother dies, that is very hard to process.
I am glad you got out of the house tonight, but I am sorry that you are paying the inevitable price. Same old story, huh!
Yes, there is a chance that the FDA will approve Ampligen by February by looking at data from a prior study instead of requiring a new Phase III study, which, of course, Hemispherx doesn’t have the money for. I am hoping, but like I said, I a not holding my breath. If it were to be approved, insurance companies would have to pay for it. And it would be much more widely available. Maybe not right away, but eventually. If they don’t approve it this time around, it will never be approved. it’s serious business right now.
It’s true that it’s best to get Ampligen early, but it does work, for patients with the right profile, even if they have been sick for a long time. It will just likely take longer for them to see a response and the response may not be as dramatic as for patients who haven’t been sick for very long. I was a skeptic for quite a while, but I now do believe that Ampligen works. Everybody should have access to it. There is no excuse.
I hope it didn’t sound like I wanted to cut funding for other diseases. MS can indeed be very serious and, of course, late-stage AIDS is awful. It’s just that we have been neglected for so long and there is no justification for it. It’s time for the appropriate agencies to catch us up.
Thanks for your well wishes, Kathy.
Take good care of yourself!
I’m with you. I’ve been unable to earn an income since 1990. I am unable to take care of my home, my garden, or my beloved crafts. I have lost many ME friends to suicide. I am offered ineffective pain pills and mind-altering drugs so that I won’t care how sick I am. Friends and family have abandoned me for who has time for someone who never gets better? I dread the day when I am put into a care home, when I lose my home and my cats. This is not something I look forward to with any pleasure. I would rather die than lose the last friends and companions I can truly trust. Ampligen has helped people I know, but I have no hope for ever being given the privilege of this drug. I have watched the FDA and CDC stall and reject this miracle drug. I dare say that if the drug had been developed by a US drug company, or one with big US labs, the delay would never have happened.
Take care and keep on going. Your little girl is worth the separation.
I am sorry for being late (again) in replying to everybody’s amazing comments. Writing this little piece put me into mini-crash mode for 3 days. Not bad. The short duration of the setback is most likely due to Ampligen. Then, on Thursday, I got my infusion and headed home for the weekend. Friends of mine drove me to Sacramento because they had to go anyway. Great timing. And Ed picked me up from there. I don’t like him to make the return trip in one day. It’s a lot of driving and I worry about him when he does it. Sacramento and back is a lot more doable. When we got home, I had a mammogram and a breast ultrasound right away. I’ve had some pain on one side for months. I’ve been trying denial, but that ultimately didn’t work. So, I had to have it checked out. The radiologist didn’t seem to like her job very much and I was too worn out from the trip to ask many questions. She didn’t really volunteer anything, so I don’t really know anything yet and have to wait for the final report. But she didn’t seem worried, so for now, I am not worried either. If the imaging shows nothing, then I still won’t know where the pain is coming from, but at least I can keep the big C out of my head for now. Last night, Ed and I went to a fundraising dinner for the two sons, Kurt and Peter (4 and 7 years old), of friends of ours who have one of the most severe forms of muscular dystrophy: LGMD2C. Without a breakthrough in science, they will be in a wheelchair by the age of 10 to 12 and will die in their late teens or early twenties. The term “heartbroken” doesn’t begin to capture my emotions since last night. There is so much suffering in this world. But at least Kurt and Peter have reason for hope because their parents have done an amazing job fundraising for and sponsoring research.
Thanks for your comment, Phyllis! I really understand the comfort pets can provide when humans have mostly given up on us. The thought of losing them as well one day is unbearable. Our cats are our first born children to me.
There have been issues with the maker of Ampligen, Hemispherx. But those are no excuse for the FDA to sacrifice patients like they have. If Hemispherx is harder to deal with than the average drug company, does that provide a justification for taking it out on the patients? … And yes, if Hemispherx were part of big pharma, we wouldn’t even have this discussion.
Thanks for your support, Phyllis.
Jeannette
PS: Things are not getting easier. I dropped Ed off at the ER earlier because he fell in the bath tub and we suspected he broke a rib. He insisted on me going home because of the risk of catching an infection. He just called me. He hasn’t talked to the doctor yet, but the Xray shows three fractures and they want to admit him to the hospital. I have no idea where to go from here. He is Aimee’s caregiver in addition to our nanny. He is my attorney for my citizenship interview on Monday. And he was going to drive me back to Incline for my infusion on Monday. This the thing: Everything has to go just right for us to be able to hold our lives together. If something goes wrong, everything falls apart. There are no reserves to spend in times of emergencies. Our reserves are used up every day.
Anyway, I might not get to the other comments today, as I had planned.
I keep thinking that if the FDA saw Aimee’s picture and heard her chanting “Mami” that they’d bend and be won over to allowing Ampligen and the insurance companies and government regulators of Medicare and Medicaid would all approve coverage for it. Naive, I know, but if they aren’t convinced, then they are cruel, heartless cads. That’s not an objective assessment. It’s focused much on big money at a time when budgets are being cut for social programs and insurance companies are trying to cut back on their expenditures. I hope it works out for you — and ultimately, everyonw with this darned disease.
Ok, I am back. Quick update: Ed has three fractured ribs. He has some pain, especially when he sits down. You know that in-between moment between standing and sitting. That’s what hurts. And twisting his torso. So, getting into and out of a car is not fun for him right now. But my main worry, pulmonary contusion, didn’t materialize. He spent one night at Stanford Hospital and when they realized that he is doing well, they let him go the next afternoon. It was definitely a bit of a scare, but all seems ok.
The last weekend, which involved some serious stress as well as more activity than I am normally able to do, made it quite obvious that Ampligen has started to kick in. I held up much better than I would have just a month or so ago. Dr. Peterson saw this coming weeks ago. What can I say: The man knows this disease and this drug extremely well. And he would hate if he knew that I am talking about my treatment online. I think he feels that this is tricky because every case is different and treatment decisions have to be made on a case-by-case basis, in this disease probably more than in others. But I can’t help but provide what I think is some hope for others.
Anyway, Kathy, I’d like to think that the FDA had a heart and that looking at Aimee’s picture and hearing our story and that of others would affect them. But given the history here, I don’t expect such reasonable and human reaction.
I can only say wow. You have been through so much. Keep fighting, keep strong. And thank goodness for video calls.
You are very sweet!!! But honestly, and I say this in all seriousness, there are many cases out there that are much worse than mine. Things have been challenging, but others have suffered a lot more than me. It’s not a competition. I am just making the point for those people who read this who are not patients. I don’t want to mislead anybody. Many people with ME are much worse off than I am.
And yes, video calls are awesome. I just finished one with Aimee and Ed. At the end, Aimee was hugging the laptop.
Aw, bless. There’s no need to compete but it can be just as important and useful to recognise our own struggles and remember to congratulate ourselves on having got this far after all.
Jeannette,
I grew up and lived part of my adult life in the Netherlands and the other part in many different countries in Europe. Witnessed East Germany and the fall of the wall up close and cheered on like many others. Having lived in Nurnberg later I know that the East problems were not easily fixed after the fall of the wall but that’s a whole different subject.
I was diagnosed in 1980 in the Netherlands with ME which was than a completely legit illness. They managed to do a 360 turn under the influence from Big Brother to which the Netherlands always looked up and suffered from the ‘good puppy’ syndrome. ME is now hardly used the and it’s mostly CFS and the people are struggling more than ever. When I was diagnosed I was still offered treatment and boy have I hung on to this diagnose and refused to use the CFS direction.
This is our second stay in the US, we lived from 1999-2002 in CA, the Bay area, moved to France for 3 years and moved back but this time to Oregon in the hope on better treatment for me.
That didn’t materialized, no matter how hard we tried. My hope was on the WPI, my husband and I made substantial monthly donations which my husband’s employer matched.i sponsored 2 ‘I Hope You Dance’ tickets for someone who was able to attend on the contrary from my whobecame bed bound the moment I sat foot on American soil. Overdid the international move and suffered from the aftermath of a gone horribly wrong French TTT( tilt table test) .
After WPI collapsed so did I. I had no hope left. We had purchased an RV so we could drive to Reno and stay in our mobile home while I got treatment at WPI. I tested twice positive for XMRV. I was so hopeful to finally see a light at the end of the tunnel. Unfortunately that those batteries died pretty quick. I thought about Ampligen after I got an invitation to a trial from a Bay area dr. But I hesitated. I was so sick and the thought of such a financial commitment just seemed so unjust. I really thought I would die soon anyway. It’s now a few months later and I’m still here. Still thinking of Ampligen, knowing I need to make a decision soon. You probably know the questions you ask yourself all too well. Do I have the right to move my husband to another state and live in the RV for a long time and make such financial sacrifices with no guarantee whatsoever?
I’ve decided to try the cheap Ampligen version at home first. Dr. Enlander uses it for all it’s patients and some call it the weaker Ampligen. It’s Nexavir/Kutapressin. My dr wrote me an RX for 6 mths and we’ll see what happens.
Just wondering why you didn’t do the Amplien closer to home in the Bay area? The name of the dr. is just out of my reach. But I know he started a few weeks ago in Oakland?
Anyway my dear, from one immigrant to another, I salute you for your braveness and courage, you’re a true inspiration! I will closely follow your progress, I hope you’ll document it!
Hello Tink,
You are right: The divide between East and West Germany is still very painful. It’s a whole separate piece in itself to write about. I am glad I escaped all of that by leaving.
I hear you on ME vs. CFS. I refuse to call this CFS or chronic fatigue. What a belittling, insulting and harmful name! Talk about adding insult to injury.
How are things in France re ME? I imagine not good, but unlike with other European countries, I haven’t heard any horror stories from France (yet).
The whole WPI story is sad beyond words. It crushed so many of us. And all that money that we donated …
I am sorry to hear about your crash. They (whoever “they” are) say that getting married and moving are the two most stressful life events. And that’s for healthy people. And it’s for people who just move to a different neighborhood in the same town. Doing an international move this disease must be absolutely brutal. Moving to Incline set me back for several months. So, I can only imagine what you went through.
My tilt table test was an awful experience as well. I would NEVER do it again. And I want to scream to others off the top of my lungs, “Don’t do it!”
You are exactly right re Ampligen: It’s such a huge commitment (financially and otherwise) without a guaranteed successful outcome. It’s a very big step to take.
I heard about Kutapressin in Llewellyn King’s interview with Dr. Enlander. It is very intriguing. I would be interested in hearing about your experience with it!
When I moved to Incline Village, there was no doctor in the Bay Area that was approved to give Ampligen. That recently changed: Dr. Raj Patel in Los Altos got approval from Hemispherx to give the drug. Unfortunately, transferring from one doctor to another is not totally easy. And I just can’t go through another move right now. Too risky. Anyway, here is Dr. Patel’s website for those folks in the Bay Area who would like to pursue Ampligen:
http://www.drrajpatel.net/
I have not heard of anybody in Oakland giving Ampligen. If the name of the Oakland doctor comes back to you, maybe you can let us all know.
In terms of documenting my progress, I decided not to write about it in too much detail because it can be misleading to hear about side effects that I had because not everybody will have the same (or any) side effects. And some patients respond very quickly and others take a long time. I don’t want to discourage anybody who might have great results from Ampligen. And, on the other hand, I don’t want to get peoples’ hope up too much because not everybody will respond. But I will post more general updates whenever I feel like I had a significant change. And I will say one thing: The drug really works for some of us.
Anyway, fellow immigrant: Thanks for commenting!
Jeannette
Hi, Jeanette, I have met you recently in the infusion room…Anita introduced us. What you have written is so beautifully described and oh so true! Did you register for the FDA stakeholders phone meeting on Sept 13? This would be a phenomenal opportunity to express your very articulate views and thoughts about Ampligen with the FDA! Anita forwarded the information to us all…I’m hoping you got it and are signed up. My heart is with you and I’m so sorry you.are separated from your family. Hope to see you.soon…(I come in at noon for my infusion). Take care! Terry
Hello Terry,
Nice to “see” you here
And thank you!
I am registered for the call, but I do better with writing than with speaking.
Yes, I hope to see you again soon. My infusions are at 9 am, but I get saline afterwards and sometimes the whole thing takes 3 hours or so.
Take good care,
Jeannette
An excellent piece, Jeanette, as always. I LOVE it. Almost every thought elicits a dissertation in my so-called brain and I barely know where to begin. It’s such a strong piece that I just ended a rant/vent at my poor husband – who most certainly didn’t deserve it and who took it all – because a dam had broken, yet again. I read your piece aloud – with a barely functioning voice because two or so weeks ago yet another body part went wrong and now I have hypothyroidism. This is not even the problem we’re “all” looking for at the moment – I know that something new that’s much, much bigger has broken (besides the dam – ha!) and the hypothyroidism is just a new development and a “mild stumbling block” that needs to be endured and dealt with as we continue hunting for the “major new part” that’s terribly wrong, but I am too sick to really identify or describe to my doctors. Heck, we attributed my hoarse voice to stress, as we made excuses for many other problems, the pattern I’ve lived with so long.
I’m so tired of living in the “no hope” category – 38 years of this, each month getting progressively worse – I can’t use the phrase each “year” any longer, amazed that there are always more things that can go wrong! I’m tired of having to keep putting on a happy face all the time, my latest attempt at helping others as well as myself – just an extension of the happy face I tried to put on for my kids as they were growing up. When you talk about Aimee, I see my kids at various stages. My youngest tells stories to my oldest of “what mom was like” and what she did before she got REALLY sick because I was already sick even before I had my first – perhaps THAT’S why I put up so many “old pictures” on my blog? (Hmmm…) My middle child is in the middle zone somewhere, has some memories, but not as many as my oldest.
And I know how you feel…a mother’s love. I know you are fighting hard for Aimee’s sake. I always told my kids, no matter what, but in a crisis or huge moment, I’d be there despite anything and everything, proven here and there, but most recently when I somehow managed to get wheel-chaired and flown 12 time zones away to see my son get married. Most would say, “how sick can she be if she can do that?” but if so, the they don’t understand what a combination of mother’s love is, nor how adrenaline can kick in, nor understand that I spent almost every moment but for three relatively short occasions in the hotel room, too sick to even allow cleaning staff to come in but once. I stayed in that country for just about 2 weeks in order to get there early to “recover” enough (ha!) to go to the wedding and then to recover enough to fly home – so sick by then that family members thought they might have to fly out to bring me home – only to be even more bedridden than before, sicker.
But the horrid effect would have been the same were the wedding just one hour away, one time zone away or 12 time zones away. It mattered not, no matter what the “so-called” experts say. There’s not been one piece of advice that I’ve not seen come and go over these last decades – “hard and fast rules” for the DD. I’ve simply learned how my body reacts to anything, and figure out all the permutations in everything I do, every step of each and every day, trying to figure out how I can do something (take a bath), building up to something that needs to be done, like my “monthly visit” to my PCP (ha!)
And of course, a lot hit home because though I, personally, never lived under communist rule, my parents and grandparents certainly did and it’s affected me to the point where one night my poor husband said, “if you’re going to argue with Stalin in your sleep again tonight, can you do it at least do in Englsh so I can understand?” The arguing, I realize, is because I, too, am seeing much in this country going that way, the erosion of our rights in so many ways others around me don’t see. I’m not saying we are anywhere near there and I love my country almost to embarrassment, but I’m certainly not blind to many short-comings and fear many things that are happening. It’s a tough place for many.
Furthermore, I’m angry about the whole Ampligen thing since I knew some who may have gotten it in ’97-ish, when they were doing double-blind studies, when no one knew if they were getting the real “liquid gold,” or a placebo. I was not eligible for it because of the 5-year cut-off date and at that point I’d been sick for 22 years.
But most of all I’m angry because every day I discover new people on twitter, who most often are teens or young adults who have the DD and I scream in my head, “when will this be resolved???” I’m so glad you used the word “crime.” I’m so glad you mentioned the excercise thing. In my mind it’s almost in the category of “myth” (at best) because over these 38 years I have been given so many treatments and so many “this is what you must do” (can you put a good German or Russian accent on that line?) or you must do that…all to be turned around a few months or years later.
Research… We need research. We need doctors who are not rigid in their thinking. We need doctors who aren’t afraid, who aren’t bullied by the opinion of certain so-called experts (i’m not even going into THAT). We need a government….well, why go on? I agree with all of what you’ve said in that regard too. And anyone who’s made it this far in my comments: Congrats!
But Jeanette: my hat is off to you. You really know what a real mom is and I’ve had you in my thoughts and prayers since your last post when I saw the difference between your idea of what a mom is (as in your mom’s visit) vs. your actions of what a real mom does (sending Ed and Aimee away from Incline Village for Aimee’s sake). Aimee will have many, many wonderful adventures with you…I have absolutely no doubt about that! And congrats on the citizenship: I remember that day well in my own parents’ lives. xx
Oh, Irene, my heart breaks reading your comment! Cases like yours, sick for 38 years (!), is what the public needs to know about. The physical pain and limitations are tremendous, but the emotional pain that comes from not having any reason to have hope and from feeling that nobody cares takes a huge toll as well.
I am sorry to hear about your hypothyroidism! Yet another organ that stopped functioning properly. One of the most important ones. Do you know if it’s autoimmune/Hashimoto’s? I am just curious. Has your doctor put you on meds? Synthroid? Cytomel?
I am so glad you got to see your son get married. But your story is so classic and it is exactly what most people don’t understand. The whole adrenaline thing that can help us do things that feel like lifting cars to us. And more importantly: the damage that the use of that adrenaline does to us.
I really hear you about loving your country. I loved this country before I ever set foot in it. My high school friends are not at all surprised that I ended up in the US. I was always fascinated by it and I still am. It’s a wonderful place–with growing problems. Overall, it’s nothing like Stalin’s Soviet Union or Honecker’s East Germany. But there are issues here that make certain aspects of life reminiscent of communism in some areas. And I am certainly not anti-government. And I am very mindful of the opportunities I have been given here.
The whole Ampligen story makes me so sad. All those lives that have been sacrificed when they could have been saved, either by preventing an early death or by preventing a slow and agonizing death over decades. What could possibly be a justification for that? Nothing! Every day, people get sick with this disease and a drug that could help many of them is just being withheld from them. For no good reason.
Thanks for your kind and encouraging words, Irene! They mean a lot. I try to be as good a mother as I can. So far, I haven’t done a very good job at it. But having started to feel better on Ampligen, last weekend gave me a glimpse of the kind of mother I can be.
Jeannette
PS: The citizenship interview didn’t go as well as I had hoped. They want more information before they make a decision. It’s a bit scary. Yet another government agency that sometimes acts quite crazy. I swear I am not anti-government
But I am anti-stupidity and anti-power trips.
Just a short reply, though there is much to answer here. BUT, PLEASE do NOT EVER say that you have not done a good job as a mother with your daughter thus far…your words. no! No! NO! If you’d like to discuss this privately, I believe you may have access to my email address and please feel free to contact me, the veteran of 38 years of torture but along the way, doing a “pretty good” job of raising those kids. Writing it here is too much and I’m afraid would sound like I’m blowing my horn, but there were always little signs along the way that Clarence showed me just as I was my lowest points, many of which are very funny. (I’ve given my guardian angel a name finally – he deserves it!) But NO! You are a great mom. So there! No arguments about that, please! (“Please” added only in order to not sound too awfully harsh!
)
It’s only a shame that we don’t get report cards from a higher power. Think about it: we got graded all our lives, but the biggest thing in our lives? The children? No report card there! Maddening. But please, I don’t think anyone here would ever say you’re not a good mom, but quite the opposite. You are sacrificing so much for your beautiful Aimee. Now hush up! -about the “mommy” part! irene/Upa xxx
Btw: I finally met my cousins and dozens of other aunts, uncles, in-laws, second cousins, etc., in Russia and the Ukraine in ’93. We found my mom’s sister in ’96, after everyone thought she’d died as a child early in the war, after a separation of almost 60 years! Yes, that wall coming down was a glorious moment, continuing in a domino effect that had just started and going down so quickly…hooray! xx
That is amazing, Irene! Were you guys able to communicate? There must have been tears?
Oh yes! It’s like a fairy tale in many ways, better than anything I ever dreamed of all my life in the “What if….” category.
But somehow, through a series of bad luck, our addresses for my favorite cousin got lost (moves, etc.). I was in despair. Then on January 7, 2010, on “Russian Orthodox Christmas,” I got a Facebook message from my cousin. She’d been bugging her computer major grandson to find me and so he did, despite my married name being a very common one. FB had just started in Russia and I have no idea why I added my name in Russian as well (for camp alumni, I suppose?). We now occasionally Skype and she gives me news of which cousins, aunts and uncles spread all over Russia and the Ukraine are doing, most of whom I’ve not had the chance to meet but my mom knew them well and finally got to see them again after “the fall.” I pass the news onto my mom.
Each time my favorite and closest cousin and I Skype (not often enough since she and I both have trouble with technology) she cries for the first 5 minutes, as her family “chides” her “(Mama! Babushka! Ира can’t understand you if you’re crying!!!) She, at 70, is amazed and grateful that we have found each other again, have visited in person, wishes I could visit yet again and begs me to come for a stay. Yes, my Russian is pretty good, so language is not a barrier. But the long-lost sister…that is a truly miraculous saga which needs to be written about one day. It is/was not to be believed. One “funny” thing: she’d been living in a “closed city” where no one was allowed to go to and leaving to visit anywhere was difficult, as it was a “top secret” city. Thank God that d*mn wall came down.
One last thing…I stayed with her family for 3 weeks one summer. It’s hard to be the actress for 3 weeks. My daughter calls me a better-than-any-Oscar actress as I automatically go into “healthy” mode around anyone outside my immediate family. It’s totally unconsciously, coping mechanisms developed from the “used and abused” days of ME. But that “actress mode is good for only for a few hours, or for a day or two…hard to keep up for long.
Well, it was a shocker as this cousin also has ME and fibro, though never “diagnosed” with it. But every year, for two weeks, she’d go to a sanitarium to rest. Even when it was the USSR, the family put their pennies together for their mom. Life there is so difficult. But I learned yet more about my illness from her. We ended up comparing notes, further bonding us. Her family enforced my rest, fed me healthy food (fresh eggs, fresh chicken, killed just an hour ago!) when this was a huge sacrifice. I came home feeling better than. Had in years and my husband often says, “go visit Olya. You know how much it helps you feel better.” If only it were that easy! xxx
Hi Jeanette,
Some months ago I put you in touch with a woman who tried Ampligen through email. (She was called Danya.) I was told it was not a good drug. Now that I read that you having no/few side effects on this I feel encouraged. Please let us know if there is any improvement. I will be so happy to admit I was wrong about Ampligen. It would give me much hope if this drug could really improve things.
You wrote that Ampligen only helps a sub group of patients. Maybe that is why a few patients I read about were not helped from it. (?)
Please keep us informed. I hope it works out for you.
Rachel
Hello Rachel,
I really appreciate your giving me Danya’s contact info. There is such little info on Ampligen out there that it can be comforting to be in touch with others who are or were on it. But at some point, I decided not to listen too much to other people’s Ampligen story because it can be really confusing and anxiety-producing, which is one reason I am not writing about my experience in too much detail. I decided to trust my doctor and just go for it. So much depends on your biomarkers and the stage of the illness you are in. I admit that I get a bit upset when I read that Ampligen is not a good drug. It has almost become an urban myth. I think it’s an amazing drug, BUT (1) not everybody will respond, (2) starting on a low dose and working your way up is important, especially for those of us who are more sensitive (I am one of them) and (3) the rate of infusion can make a huge difference in how well one tolerates the drug.
I think some people were just not good candidates to begin with, so they’ve had no benefits from Ampligen. And some patients have started on way too high a dose and were moved up to an even higher dose and/or they were given the drug too fast (at too high of an infusion rate). So, they had bad side effects. It’s definitely a serious drug and the patient has to be monitored closely and adjustments may have to be made, especially in the beginning. I don’t want to downplay that. But if it’s done right, it can help many patients.
I was very skeptical at first. Not at all sold on the drug for a long time. But my recent improvement is quite obvious to me and those around me. I am far from well, but the drug has made me better for sure recently.
Thanks for your well wishes, Rachel! I will definitely keep people posted about any significant changes in my health. And I am keeping my fingers crossed for an FDA approval for Ampligen.
Be well,
Jeannette
You sure are having a hard time. I’m sorry to hear of your struggles, but am happy that your writing is stronger than ever. Also: the Man in the Yellow Hat IS creepy!
Thanks, Greg!
The man with the yellow hat is also clueless. I mean how often does George have to run off and get into trouble before the guy realizes that he needs to keep an eye on him. Just saying.
Thanks, everybody!
I will (I promise) respond to all of you, but i’ve had a lousy day. Kind of ironic: Just when I started to feel better. I think writing this piece did me in a bit. I suspect that I will do much better tomorrow. Recovering from a crash has been much quicker for me recently.
Have a good night, everybody!
Jeannette
What an amazing, strong testament this post is, Jeannette, about this illness and the politics of treatments, your own incredible life story, and your dedication and love for your daughter. So well said, so touching… thank you for this gift.
*gentlest hugs*
Ash
Hey Ash,
You are sweet, like always! Been thinking about you and your recent hardships!
Keep fighting the good fight!
Hugs,
Jeannette
Thanks for sharing your experience, Jeannette. When you feel better, I hope you might be able to mention what kind of CFS subset seems to improve with ampligen. I’d be grateful if anyone with this information might point me in the right direction. Thanks
Hi Lena (love the name!),
I am happy to share what I know, but keep in mind I am not a doctor.
From what I understand, patients who fit the following description have the best chance of responding to Ampligen:
* Acute viral onset
* 2-5A Synthetase/RNase L up regulation
* Depressed natural killer cell function
* Persistent herpes virus infections (EBV, HHV-6, CMV, etc.)
Here is more information about Ampligen and the new Ampligen open-label trial that is about to start in the Bay Area:
http://forums.phoenixrising.me/index.php?threads/san-francisco-bay-area-ampligen-study-amp-511-approved.18864/
Hope this helps. Let me know if you have more questions.
Good night,
Jeannette
Very sorry to hear of Ed’s catastrophe, but so glad to see that he’s recovering, and I assume, helped you with your citizenship hearing and with Aimee. It’s delightful that she hugged the laptop. Gosh, technological developments even helping with parenting! One of the best effects I’ve seen yet.
I don’t think the FDA would respond to any heartfelt stories nor photos of beautiful children. Everything is about money and politics and the politics are based on expenditures anyway.
This is a tough time when federal medical programs are on the chopping block, and they’ve already been chipped away in many states. This will impact our care and what will be covered.
It is quite an up to see that you are improving on Ampligen. I send my best wishes that you continue to improve and that soon you can return to the little girl who hugs the laptop and have lots of great experiences, whether at home or out.
And, yes, agreed on cats. When I’m stressed out, I go to You Tube and watch puppies or kittens playing. It helps.
honestly, it could have been so much worse. but it did make me realize how fragile it all is and how quickly things can turn bad.
i did the citizenship interview by myself. i didn’t want them to think i have anything to hide. ed was on stand-by at a nearby starbucks. hard to say in hindsight whether it would have been better to have a high-powered lawyer with me. if i had to do it again, i probably would take him with me.
yeah, isn’t technology great. parts of it are evil, but for the most part, it’s just awesome!
yes, tough times indeed for anybody who is sick or relies on any government help. but in case of ME, i just kind of feel like: tough s**t that the government needs to cough up more money at a difficult time. we’ve waited long enough.
animals are just wonderful!
Yes! Agreed 100%. The government should cough up much more money for ME/CFS research as to causes and treatments. And our disease should get more media and governmental attention and be prioritized. And everyone with this illness should be heard and respected.
Hope things continue to improve with you so that you can get back to your family soon.
Animals are indeed wonderful. Two live on my floor and they’re delightful.
Dead Jeanette
This is such a wonderful testimony of a very, brave lady. I live in South Africa and here we ME/Fm patients mostly need to tell our doctors how to treat this illness. Meds like Lyrica are also extremely expensive, for we import most of these drugs from the US and are not covered by medical insurances. My husband and I are experiencing our first empty nest year since our youngest son has now also spread his wings. Therefore, I am able to relate a bit with your separation from your dear ones for a while. Keep strong by looking up always to the only strong One,our Lrd Jesus.
Blessings
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You are so brave. I absolutely understand why you are going through such a painful separation from your family. You are willing to try anything to regain your former self. I would do the same but am in the UK, where ampligen is further away from our reach than the moon.
You explain yourself in such a clear and well- balanced and measured way. You speak my exact thoughts with each post you write.
We have lives that are worth fighting for. We have children and families that are worth the struggle. They want us back snd we want ourselves back. Even in my darkest days, I am not going to stop trying to beat this illness and I know you won’t give up either. There is always hope, that’s what I hold on to. We’ve all got to keep telling ourselves that – there’s always hope!! Good luck on your journey xx
i must apologize for not approving your comment sooner. i totally overlooked it (and a couple of others) for some reason and I feel bad. I am very grateful for your feedback and that you took the time to comment. it is very encouraging.
i don’t always feel hopeful, but what i’ve found helpful for myself is to hang on to the thought that the bad days or weeks will pass. it’s not always easy, but that’s how i get trough it.
you sound like a very courageous lady. i have hope that if and when ampligen gets approved in the US, it will be available in Europe and all over the world shortly thereafter. I really wish that for you and everybody else!