Update on Ampligen Availability in the US

[lauluce]

Hello @jpcv while i cannot speak for @lauluce, i can say that millions of patients with ME from around the world encounter stigma, contempt, and neglect in health care and in society.

I have no doubt there are good doctors in hemato/oncology, and other medical specialties that are well established because the diseases they serve are well funded and well researched.

By being a physician yourself, you are more credible from the point of view of other physicians than the rest of us. The doctors you see will bend backwards for you (performing special tests, offer off-label treatments, special treatments, etc). Please consider that a large fraction of is is barely getting respect in health care because we have this disease.

Indeed, we, as common people, are viewed by doctors as pseudo-humans, second class individuals in what regard to our intellectual capacity and knowledge. A doctor wouldn't take any advice or request from a patient as much as he would take advice from a dog

 

[lauluce]

Caro hermano argentino, I live in Brazil, and face similar problems, but I have the advantage of being a physician, even so it took me a long time for me to get bthings together.
I find what you wrote above weird, there are good doctors in Argentina, at least in the Oncology /Hematology area.

By the way, would you take any advice from me? Say, I've got elevated B12 in serum, the result for that test comes high over an over, and I'been taking it for for 20 years. Every doctor I've seen, tenths of them actually, have said that that result is irrelevant, or that its a mild HYPERvitaminosis with no consequence. Mi interpretation of the issue is the oposite, I believe that the excess of B12 is not caused by and excess intake of b12 through food, water, etc, or an inappropriate elimination of it by my body. Instead, I conclude, based on information acquired from reputable sources, that I'm suffering from a "functional B12 deficiency", that is, the systems in my body that require B12 to perform their functions are impaired and are consuming less B12 than normal, resulting in a buildup of said vitamin. What do you think about this?

 

[jpcv]

Do you take B12 suplements?
Do you have any kind of anemia, because B12 deficiency is related to anemia, so If your ssytems are impaired, I guess it would reflect in your red cell production ..
Many people here in this forum know a lot about B12 metabolism, I would like to hear from them.

 

[jpcv]

Hello @jpcv while i cannot speak for @lauluce, i can say that millions of patients with ME from around the world encounter stigma, contempt, and neglect in health care and in society.

I have no doubt there are good doctors in hemato/oncology, and other medical specialties that are well established because the diseases they serve are well funded and well researched.

By being a physician yourself, you are more credible from the point of view of other physicians than the rest of us. The doctors you see will bend backwards for you (performing special tests, offer off-label treatments, special treatments, etc). Please consider that a large fraction of is is barely getting respect in health care because we have this disease.

Very interesting point of view.

 

[lauluce]

Do you take B12 suplements?
Do you have any kind of anemia, because B12 deficiency is related to anemia, so If your ssytems are impaired, I guess it would reflect in your red cell production ..
Many people here in this forum know a lot about B12 metabolism, I would like to hear from them.

No, I don't have anemia.. you must be a good doctor to came to forums like this and actually consider what other people have to say about their disease, its causes and possible treatments. I believe I must be of the very few people in Argentina who have some sort of objetive evidence of its ME/CFS, as I somehow managed to ask for a repeat Cardiopulmonary Exercise Test whose results showed a clear decrease in aerobic capacity between the first 10 minutes exercise test and the second one, done 24hs later. I also have a very positive tilt table test confirming POTS. Besides this, some test have shown some puzzling non-specific anomalies, like a consistent mild monocitosis, and recently a decrease in gamma-globulin, among other things. I wish I could find a doctor that could make some sense of this

 

[jpcv]

Thanks, but I'm here basically as a patient. I'm studying a lot about this disease, learning more about medicine. If I don't find a good doctor here, I''ll be forced to consider that maybe I should be the one who will be in charge of ME patients here. It will take a long time but at least I know how to prescribe Rituximab.

 

[lauluce]

Thanks, but I'm here basically as a patient. I'm studying a lot about this disease, learning more about medicine. If I don't find a good doctor here, I''ll be forced to consider that maybe I should be the one who will be in charge of ME patients here. It will take a long time but at least I know how to prescribe Rituximab.

Thank you, simply thank you

 

[kiwigirl29]

I just came across this link while googling Ampligen, quite unwell today so unsure if it will be helpful-only skim read it, but thought it may be useful?
https://globenewswire.com/news-rele...r-Sale-to-Early-Access-Program-in-Europe.html

 

[Jesse2233]

Dr Kaufman has/had plans to offer Ampligen at OMI. Not sure if these are still on the table with the problems at Hemispherx

From HealClick (1 year ago) https://www.mypatientmatch.com/posts/ampligen-and-rituxan-at-omi-51874

I asked Dr. Kauffman about ampligen last week and he said OMI is in the process of becoming an ampligen test center. He said he's had patients on it and they tend to relapse after it's discontinued

Any other Dr K patients have any up to date info?

 

[Gingergrrl]

Dr Kaufman has/had plans to offer Ampligen at OMI. Not sure if these are still on the table with the problems at Hemispherx

I have seen him since 2014 and I have never once heard him say that OMI would be offering Ampligen (or even trying to get Ampligen) and my understanding was that it is unavailable in the United States. Even if it was available, he did not think I was a candidate for it and it was never mentioned to me as a treatment option (but I turned out to have major autoimmune issues so that makes sense to me).

I read your link and for me, Rituximab would be worth risking my life for BUT only b/c of the test results that show I have 11 B-Cell autoantibodies combined with my very positive response to high dose IVIG which I tried first. I would not have attempted to get approval for it prior to those positive autoantibody tests, or the positive response to IVIG, b/c it would have been too dangerous IMO to do completely randomly IMO.

I am also attempting to get approval for the first dose to be done in the hospital since I react to everything. So my goal is to try it but to try it as safely as possible. I know this thread is about Ampligen but the link you included was about Rituximab, too, so I wanted to respond to both parts.

 

[LifeIsSweet]

Apparently, Dr. Lapp provides Ampligen treatment in Pennsylvania. http://drlapp.com/research/
The therapy is OBSCENELY EXPENSIVE. And anyone who is not in PA would have to move there to get the 2x/week treatment. Infuriating. Also, I would be concerned about the increased risk of breast cancer, etc.

 

[Jesse2233]

Apparently, Dr. Lapp provides Ampligen treatment in Pennsylvania. http://drlapp.com/research/
The therapy is OBSCENELY EXPENSIVE. And anyone who is not in PA would have to move there to get the 2x/week treatment. Infuriating. Also, I would be concerned about the increased risk of breast cancer, etc.

Currently offering it to new patients? When I called 3 weeks ago they said no

 

[LifeIsSweet]

Oops, sorry about that. They should update their website!

 

[Jesse2233]

Oops, sorry about that. They should update their website!

It's all good! Got me elicited for a second

 

[carol53]

Ampligen is being used in the USA but it is 200.00 per bottle and we use 2 per week. I know of no sites recruiting patients. Not all patients respond but those who do see great benefit. Hemispherx currently has an early access program in Europe and Ampligen is approved in Argentina.

 

[Jesse2233]

Ampligen is being used in the USA but it is 200.00 per bottle and we use 2 per week. I know of no sites recruiting patients. Not all patients respond but those who do see great benefit. Hemispherx currently has an early access program in Europe and Ampligen is approved in Argentina.

How are you doing on Ampligen?

 

[carol53]

I have severe ME/CFS (required to participate in the trial). When I first started Ampligen, I was barely able to care for myself and had to hire drivers to get me to the infusion center. The effects were not immediate but after several months, I started getting better. I function at a much higher level on Ampligen. My labs improved too. Viral infections were under control. My natural killer cell test went from 5 to 70. Ampligen is a good drug in the hands of a bad pharma.
To answer your question, I am doing well for now.

 

[Jesse2233]

I have severe ME/CFS (required to participate in the trial). When I first started Ampligen, I was barely able to care for myself and had to hire drivers to get me to the infusion center. The effects were not immediate but after several months, I started getting better. I function at a much higher level on Ampligen. My labs improved too. Viral infections were under control. My natural killer cell test went from 5 to 70. Ampligen is a good drug in the hands of a bad pharma.
To answer your question, I am doing well for now.

@carol53 I've heard from two people that Ampligen has become less effective since Hemispherx altered the formula (possibly to extend their patent). Has this been your experience or have you heard from others who have said this?

 

[dannybex]

@Jesse2233 Dr. Lapp still has it available as a treatment on his site. Is this info incorrect?

http://drlapp.com/research/

 

[ScottTriGuy]

@Jesse2233 Dr. Lapp still has it available as a treatment on his site. Is this info incorrect?

http://drlapp.com/research/

I spoke with one of Lapp's patients about 6 weeks ago and he's still receiving treatment (18 months in and he has much fewer neurological symptoms but is still basically house bound...so a moderate responder). I don't recall him saying if they were or were not accepting new patients.