Hello,
I am notified via email when there is comments made on this website.
I could not help but respond.
There is an ocean of people suffering. There is no help.
I would be curious to find out how many suicides have occurred from the aftereffects and misery of having taken this medicine.
As recently as last Monday I commented the same to a doctor, he looked at me like I was crazy.
I am dealing with so very many side effects it is a struggle to live every day. Last night I could not get to sleep because my scalp itches so bad, terrible lesions all over my scalp, the doctor called it tinea amiantacea.
They say I developed Sjorgren's from a year of treatment in 2008, but due to insurance coverage no one is helping. There really is no help for us.
Sorry to say. I no longer trust doctors, I see a naturopath now for care.
My son has had similar experience and now refuses to go to doc too. He hurts all the time and can’t get any relief . He now has developed breathing issues. It is so sad for him
My son has had similar experience and now refuses to go to doc too. He hurts all the time and can’t get any relief . He now has developed breathing issues. It is so sad for him
Yes, I developed breathing problems while on treatment and thereafter. But.... I was a smoker.
I can't think of too much it didn't do. Everyone who too these drugs should be getting a bone density test. It really damages the bones, that is contributing to the pain. Previous to treatment I was told I had the bones of a 20 year old. After treatment, osteopenia, and terrible pain in my legs. This pain first appeared when I was put on this drug and the pain lingers, it did not go away. I am taking 1200 mg calcium. I also take CQ10, which is an anti-inflammatory and NAC, 600 mg twice a day. Have your son take the NAC and CQ10, NAC is good for the lungs. He should also get a bone density test.
He will notice a difference within 2-4 weeks. All of these supplements cost money, the doctor's who did this to us should be paying for our supplements!
Yes, I developed breathing problems while on treatment and thereafter. But.... I was a smoker.
I can't think of too much it didn't do. Everyone who too these drugs should be getting a bone density test. It really damages the bones, that is contributing to the pain. Previous to treatment I was told I had the bones of a 20 year old. After treatment, osteopenia, and terrible pain in my legs. This pain first appeared when I was put on this drug and the pain lingers, it did not go away. I am taking 1200 mg calcium. I also take CQ10, which is an anti-inflammatory and NAC, 600 mg twice a day. Have your son take the NAC and CQ10, NAC is good for the lungs. He should also get a bone density test.
He will notice a difference within 2-4 weeks. All of these supplements cost money, the doctor's who did this to us should be paying for our supplements!
Hello my name is Terry and after finding this site I realize that I'm really not losing it well lemme correct that since my 46 weeks of shots and white horse pills in 2008 . I forget what it is I forgot, I stay in a state of depression , after 5 years clean from heroin use I relapsed and as a result I lost my girl, my job and a home.( I now reside in a tent in a park) basically waiting to die. Although I've worked and payed into SSDI since I've been 15 ( I'm now 50) I still can't get help. Now I know I'm not alone this site just may have saved a life today. Thank you and keep on keepin
In 2009 -2009 I participated in a 2nd Stage testing of a 12-month HepC drug therapy using interferon, ribavirin and Boceprevir, a protease inhibitor being developed by Schering Plough. It was a terrible drug cocktail and I suffered painful rashes, flu-like
symptoms, insomnia and anemia. After 9 months I could no longer care for myself and had to quit the study before completion in the 11th month. The HepC virus was non-detectable within 3-4 months of starting the drug therapy and has remained so. Unfortunately, I didn’t fully recover from the therapy. I suffered from anemia, low white blood cell count, insomnia, depression and suicidal ideation. I was soon after diagnosed as bi-polar and treated successfully with lamictal (lamotrigine) 25 mg.
Although I was able to manage a normally paced life-style for the next 3 years I began to suffer from strange, periodic 1-2 month bouts of flu-like symptoms. Similarly, I suffered severe reaction to oral surgery in 2014 but this time never never recovered. I was consequently diagnosed with ME/CFS. My symptoms included the following:
1. Fatigue made worse by exercise
2. Flu-like malaise, feeling “sick all over”
3. Insomnia and non-restful sleep
4. Severe migraine headaches (after accumulative exertion)
5. Tinnitus (nearly constant)
6. Swollen lymph nodes in neck (daily)
7. Heart murmur, palpitations
8. Cognitive function problems
9. Brain fog
10. Difficulty understanding speech (occasional)
11. Attention deficit disorder
12. Memory loss – especially short term memory
13. Depression
14. Mood swings
15. Excessive irritability
16. Decreased libido
17. Nightmares (frequent)
18. Balance problems
19. Tightening of the muscles of the sole of my feet (usually at bedtime)
20. Swelling of hands and feet
21. Restless leg syndrome (infrequent)
22. Sensitivity to light and loud noises
23. Alcohol intolerance
24. Dry eyes and mouth
25. Temperature and weather sensitivity
Over the last 4 years I have traveled the world (I reside in Southeast Asia) searching out advice and receiving medical care from specialists including Dr. Stewart (Austin , TX), Dr. De Meirleir (Brussels, Belgium) and Dr. Jose Montoya (Stanford University, CA) as well as numerous authorities that I accessed online including Dr. Rawls at Vital Plan. Over this time and through great effort of experimentation I have cobbled together a self-prescribed treatment plan that has reduced the adverse effects of my condition and vastly improved my quality of life.
It was only recently that I received any feedback from ANY specialist that corroborated my conviction that my ME was caused by the interferon/ bocefivir therapy. My local endocrinologist confirmed that tests had recently been completed confirming averse effects on a percentage of interferon survivors. (I was unable to access any of these tests)
I stumbled on this Mayo chat only recently and was saddened to witness so much suffering. I too share the anger and often suffer from the despair that comes from the terrible isolation of this unrecognized and often maligned condition. Few of my friends and family have any real notion of the suffering I have endured and the pains to which I must go to manage my symptoms.
Obviously I´m not qualified to recommend treatment strategies. I have witnessed so many variations of adverse effects of the interferon and I´m convinced that there is no "one size fits all" approach to treating the illness. However, because of the apparent unwillingness of the medical profession to properly address post interferon syndrome, specifically, and ME/CFS, in general, I feel we must do what what we can to help each other develop the skills of self-advocacy to carry on. In that spirit, I hope to see the thread of shared anger and pain become a source of information and positive action and offer my experience.
Hi, after reading through these old posts I came across your comment. It appears to have excellent medical coverage. NO ONE even cares to test me for anything. What does the acronym ME/CFS stand for? Are you still taking Vital Plan and has there been any improvement in how you feel?
Hello, I just started a podcast at ANCHOR.FM/LISA-DESTELLA3 please tell ur story, I've been in contact with Merck n it's not going to be pretty. We need to stick together
I'm sorry I wasn't able yet to do anything on the podcast. There is not one thing right now that I don't have to fight for. I feel crippled by not havinga computer, for a computer is my voice. No money to buy one either. How are you doing and how is the podcast doing? Have you made any progress?
Hi, after reading through these old posts I came across your comment. It appears to have excellent medical coverage. NO ONE even cares to test me for anything. What does the acronym ME/CFS stand for? Are you still taking Vital Plan and has there been any improvement in how you feel?
Hi sueleerock,
"Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems. ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with thinking and concentrating, pain, and dizziness."
I´m so sorry to hear that you are unable to afford a device to search the internet. I admit, for us, it is critical to be able to search out the valuable and potentially life-saving information and support found there. I recommend that you look for an economically priced, used "tablet" or "slate computer" and begin your research as soon as you can. I will be happy to steer you to websites that have been a critical help in my struggle to manage my illness.
Hi sueleerock,
"Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems. ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with thinking and concentrating, pain, and dizziness."
I´m so sorry to hear that you are unable to afford a device to search the internet. I admit, for us, it is critical to be able to search out the valuable and potentially life-saving information and support found there. I recommend that you look for an economically priced, used "tablet" or "slate computer" and begin your research as soon as you can. I will be happy to steer you to websites that have been a critical help in my struggle to manage my illness.
I wonder if that is my problem since being treated. I have multiple issues, and quite frankly, have given up on getting any kind of diagnosis with the insurance I have. The liver doctor said I have the symptoms of Sjorgren's.
I stopped going to doctors except for the things needed at 65. I do not trust them anymore.
Just wanted to shout out to both you (sueleerock) and seekay. I do follow these threads, although I don't post much. I've given my story and that's pretty much all I have to offer. Seekay's post is interesting as stating that ME/CFS may get worse with people trying to do too much. While I've been retired on disability for over ten years due to HVC and the "treatment", I still have sleep problems and far too much fatigue. It seems the more I do, the more I'm exhausted and don't want to do anything. I readily admit I've been a smoker for 50 years, so I'm not sure where to lay the blame for all my ailments. I am supposed to be on O2 24/7. So, old age, HVC treatment, or some other crap. AAR, thanks for your posts.
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My son has had similar experience and now refuses to go to doc too. He hurts all the time and can’t get any relief . He now has developed breathing issues. It is so sad for him
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1 ReactionYes, I developed breathing problems while on treatment and thereafter. But.... I was a smoker.
I can't think of too much it didn't do. Everyone who too these drugs should be getting a bone density test. It really damages the bones, that is contributing to the pain. Previous to treatment I was told I had the bones of a 20 year old. After treatment, osteopenia, and terrible pain in my legs. This pain first appeared when I was put on this drug and the pain lingers, it did not go away. I am taking 1200 mg calcium. I also take CQ10, which is an anti-inflammatory and NAC, 600 mg twice a day. Have your son take the NAC and CQ10, NAC is good for the lungs. He should also get a bone density test.
He will notice a difference within 2-4 weeks. All of these supplements cost money, the doctor's who did this to us should be paying for our supplements!
Take Care.
Thank you for that info. I will have him try it.
You're very welcome.
Geez, i just typed a note to you and it disappeared. It was a long one too. Will write the again tomorrow.
Just reread the posts I was treated for a year in 2008 too. I cannot imagine being this sick and living in a tent. How are you faring today?
Hi, after reading through these old posts I came across your comment. It appears to have excellent medical coverage. NO ONE even cares to test me for anything. What does the acronym ME/CFS stand for? Are you still taking Vital Plan and has there been any improvement in how you feel?
I'm sorry I wasn't able yet to do anything on the podcast. There is not one thing right now that I don't have to fight for. I feel crippled by not havinga computer, for a computer is my voice. No money to buy one either. How are you doing and how is the podcast doing? Have you made any progress?
Hi sueleerock,
"Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and sleep problems. ME/CFS may get worse after people with the illness try to do as much as they want or need to do. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with thinking and concentrating, pain, and dizziness."
I´m so sorry to hear that you are unable to afford a device to search the internet. I admit, for us, it is critical to be able to search out the valuable and potentially life-saving information and support found there. I recommend that you look for an economically priced, used "tablet" or "slate computer" and begin your research as soon as you can. I will be happy to steer you to websites that have been a critical help in my struggle to manage my illness.
Yes, I´m still taking the Vital Plan supplements.
I wonder if that is my problem since being treated. I have multiple issues, and quite frankly, have given up on getting any kind of diagnosis with the insurance I have. The liver doctor said I have the symptoms of Sjorgren's.
I stopped going to doctors except for the things needed at 65. I do not trust them anymore.
Thank you for getting back to me.
Just wanted to shout out to both you (sueleerock) and seekay. I do follow these threads, although I don't post much. I've given my story and that's pretty much all I have to offer. Seekay's post is interesting as stating that ME/CFS may get worse with people trying to do too much. While I've been retired on disability for over ten years due to HVC and the "treatment", I still have sleep problems and far too much fatigue. It seems the more I do, the more I'm exhausted and don't want to do anything. I readily admit I've been a smoker for 50 years, so I'm not sure where to lay the blame for all my ailments. I am supposed to be on O2 24/7. So, old age, HVC treatment, or some other crap. AAR, thanks for your posts.