Thoughts on Ampligen

[Soccermanjb]

I have had CFS for almost three years now and I am returning to Charlotte to see Dr. Lapp to do blood work to see if I am accepted for ampligen treatment. What's the general feelings towards ampligen? I am house bound and sit in a recliner all day. Very sensitive to smells, chemicals and have extreme food allergy. I get IVs twice a week. I'm on fludro but I am very sensitive to salt. Extreme gut issues... I am not feeling too optimistic about ampligen and this is because almost everything i have tried for my recovery flops... I really struggle to stay hopeful, but I do my best every day to trust that God has more in store for me than this. I do hope he uses ampligen to make me well. I'm very sensitive to everything i try and i am an extreme low doser which usually ends in me not tolerating meds etc... I tried LDN and couldn't handle it even at extremely low dose. Thx in advance.

 

[SOC]

I really struggle to stay hopeful, but I do my best every day to trust that God has more in store for me than this.

Did you ever stop to think that this is exactly what God has in store for you? Isn't it all part of His plan? Maybe you have a lesson to learn. Maybe he has a purpose for you that you are not seeing because you're looking for something other than what He gave you. Maybe He's waiting for you to demonstrate a grateful attitude. Who knows?

I'd be love to have the opportunity to try Ampligen, but I'm not close enough to any doctors using it to be allowed into the program. Ampligen has a better success rate than many other treatments available to us. No treatment works perfectly, or works for all of us. All we can do is try the best treatments we can find for ourselves and hope for the best.

 

[Sushi]

I have had CFS for almost three years now and I am returning to Charlotte to see Dr. Lapp to do blood work to see if I am accepted for ampligen treatment. What's the general feelings towards ampligen? I am house bound and sit in a recliner all day. Very sensitive to smells, chemicals and have extreme food allergy. I get IVs twice a week. I'm on fludro but I am very sensitive to salt. Extreme gut issues... I am not feeling too optimistic about ampligen and this is because almost everything i have tried for my recovery flops... I really struggle to stay hopeful, but I do my best every day to trust that God has more in store for me than this. I do hope he uses ampligen to make me well. I'm very sensitive to everything i try and i am an extreme low doser which usually ends in me not tolerating meds etc... I tried LDN and couldn't handle it even at extremely low dose. Thx in advance.

I think that there is a certain profile that indicates that you are more likely to be a responder to ampligen--you could ask Dr. Lapp about it. There are also quite a lot of threads about ampligen that you could find with a google site search.

Best,
Sushi

 

[Soccermanjb]

Believe me... I know I am right where God wants me and I have grown so much closer to him through this. I have learned a lot. I've actually started a new years resolution to listen through John pipers series in Romans this year. It's 225 sermons! I'm trying to learn everything he wants me to learn thru this. Thx for your post.

 

[Soccermanjb]

I think that there is a certain profile that indicates that you are more likely to be a responder to ampligen--you could ask Dr. Lapp about it. There are also quite a lot of threads about ampligen that you could find with a google site search.

Best,
Sushi

Thx @Sushi. It's so hard to find anything about ampligen online... I feel like I have read everyone's experience at least twice. I know back when I first met Dr. Lapp he told me that he thought I would be a good candidate. I guess we just have to see if the blood work agrees... Thx I will ask Dr. Lapp about it though.

 

[minkeygirl]

If I could get ampligen I'd be on it in a heartbeat. And I'm sure lots of others here feel the same. Not getting it approved by the FDA was a huge blow.

 

[heapsreal]

What else have u tried? It seems that some who respond tend to relapse once off. Just a thought, if ampligen lowers your viral load then maybe good to use antivirals post ampligen to maintain your improvements and or use immunovir

Ampligen is said to be a strong interferon inducer, immunovir also is but not as strong, so maybe good to help maintain immune function which ampligen has improved.

just something to think about.

 

[minkeygirl]

When I first got sick I read a book, I can't remember the name but it was by a guy named Tim Kenney and he was in the Ampligen trials and did really well on it. Had ups and downs like you say @heapsreal but did great. Can't remember what happened since it was 20 years ago but I'd be there in a heartbeat.

What happened to Kutapressin? Isn't that supposed to do something with interferon?

 

[Seven7]

I wanted to do it and even called, but it was sooooo expensive and once you are off you would relapse so I would pay the money If I would be cured in a few years but I couldn't afford all that for live. The other issue is I live too far to do the twice a week treatments, that have to be done in their center and they only offer on weekdays and specifics days.

If you can afford and live close by, I would do it.

 

[Soccermanjb]

I haven't tried any other type of medication besides LDN. I have tried like 3-4 antidepressants but they make me more depressed. My doc tried me on methylation protocol with a big fail. But we have recently found out that I'm an over methylator. He currently has me trying atp fuel as a beginning to repair my mitochondria then we will move on to methylation... But then there is the ampligen I would do if I get accepted. @heapsreal Thx for the advice... It would be awesome if ampligen could get me to a more manageable state and then add in something like immunovir.

 

[LaurelW]

Soccerman, I've been on Ampligen twice, and it helped me both times. After the first go-round, I didn't relapse for five years. This time I'm coming out of a much worse place so it's taking longer, but it did get me out of bed and able to do things. In my experience, you never know if someone is going to benefit. I know some doctors have profiles that are predictive, but from what I've heard, this includes sudden onset, and I was a gradual onset.

I guess it depends on how intolerable your life is right now. When I was at my sickest a few years ago, I was having suicidal thoughts because I was in so much pain and constant unbearable exhaustion. So for me, it's totally worth it.

 

[vli]

What else have u tried? It seems that some who respond tend to relapse once off. Just a thought, if ampligen lowers your viral load then maybe good to use antivirals post ampligen to maintain your improvements and or use immunovir

hi @Soccermanjb, I know you asked me about this on another thread but I am v. tired/swamped so I thought I'd steal heaps' words to answer! Yes I was like he described--relapsed off the drug and for all intents and purposes went back to baseline which was VERY frustrating.

I think @Sushi is right that it best you get Dr Lapp to confirm that you indeed fit the profile--that is the most accurate way of finding out whether it's worth the expense and so forth of doing it (a great toll financially and emotionally).

 

[vli]

I guess it depends on how intolerable your life is right now. When I was at my sickest a few years ago, I was having suicidal thoughts because I was in so much pain and constant unbearable exhaustion. So for me, it's totally worth it.

Actually yes Laurel, this is totally true. If you're in that much pain and can afford it, then it'd just be worth it!

 

[Soccermanjb]

@LaurelW @vli Thank you all so much for your responses. It is great to hear from you all. It's awesome to be a part of a community and support group like this. I don't feel so alone in my CFS anymore. @LaurelW how does it work for you to be able to take it a second time? Do you have to get special permission? And if you don't mind my asking about your first go around what did you improve from and what did you improve to?

 

[Sushi]

...
What happened to Kutapressin? Isn't that supposed to do something with interferon?

Kutapressin is now called Nexavir. A bunch of us here inject it. For some it helps a lot, not so much for others. I one of the ones it helps. Again, no cure, but helps.

Sushi

 

[minkeygirl]

@Sushi At this stage in the game, I'll try anything. The key is finding a doctor to RX it.

 

[Sushi]

@Sushi At this stage in the game, I'll try anything. The key is finding a doctor to RX it.

It is expensive unless your insurance pays for it. My Humana plan pays.

Sushi

 

[minkeygirl]

I'd never get anyone I rx it for me so it doesn't matter. But I'd be willing to try anything.

 

[Sushi]

I'd never get anyone I rx it for me so it doesn't matter. But I'd be willing to try anything.

It is an old established treatment with a lot of good reports. Why do you think you'd have trouble getting it RXed?

Sushi

 

[minkeygirl]

My primary care physician is not treating me. She wouldn't even RX acyclovir for me. And if it's as expensive as you say, even if my NP would RX it, and I'm not sure about that, it would have to be approved by my insurance and they won't because she's not in the plan.