What is your NK cell function?

[NK17]

@NK17 Who are the doctors in the US that dispense Ampligen? I read it is only available as part of a clinical trial and not FDA approved, is that correct?

Has anyone on PR tried it? (I am asking everyone, not just you LOL.) Also, is it only in IV form? I am wondering as a person who failed IV saline if I could ever do well with any med in an IV form?

@Gingergrrl I know that Dr. Peterson dispense Ampligen and one of the "pre-requisites" to become his patient is to have low NK cells function.

Ampligen is not FDA approved, is very expensive and shall we add to that the fact that it is only an IV drug which needs bi-weekly infusions and you see why it is out of reach for most patients.

Maybe Dr. Lapp is the other doctor who dispense it, but I'm not too sure about this info.

 

[vli]

@NK17 Who are the doctors in the US that dispense Ampligen? I read it is only available as part of a clinical trial and not FDA approved, is that correct?

Peterson in NV
Bateman in UT
Klimas in FL
Lapp in NC
Enlander in NY (I took it from him for one year)

 

[Antares in NYC]

Peterson in NV
Bateman in UT
Klimas in FL
Lapp in NC
Enlander in NY (I took it from him for one year)

I'm curious to learn about your experience with Ampligen with Dr. Enlander. Did you improve at all? Did you notice any changes? Was it worth the money and effort?

 

[vli]

Quick answer: I noticeably improved (although not astoundingly) in the first six months, and then pretty much went back to baseline in the remaining six months. Was with Enlander for a year.
You can try to catch me on chat or PM with specific questions, I am here most of the time.

 

[Gingergrrl]

Quick answer: I noticeably improved (although not astoundingly) in the first six months, and then pretty much went back to baseline in the remaining six months. Was with Enlander for a year. You can try to catch me on chat or PM with specific questions, I am here most of the time.

@vli Do you have a blog or thread where you talked about your year long experience with Ampligen? If so, I would love to read it but don't want you to have to re-post things you have already said!

Do you happen to know, if someone cannot tolerate IV saline, does that rule out Ampligen and all other meds in IV form? This might be a weird question but how much fluid was in each Ampligen dose? Was it equal to one liter (versus more or less than one liter?) No worries if you do not know.

I am so sorry that it did not ultimately work out for you but you were very brave to try it.

 

[SOC]

I would kill for the opportunity to try Ampligen. Okay, maybe not kill, but I'd be willing to grovel a lot.

 

[NK17]

I would kill for the opportunity to try Ampligen. Okay, maybe not kill, but I'd be willing to grovel a lot.

Me too

 

[vli]

@vli
This might be a weird question but how much fluid was in each Ampligen dose? Was it equal to one liter (versus more or less than one liter?) No worries if you do not know.

You definitely get more than a L. Actually it really depends on how you feel because if you tell them you feel rubbish after the infusion, you'll get a L of plain saline right after the drug is infused but before I reported feeling crappy they gave me like half of that, so it's possible to not have an L if you don't feel bad after the infusion and are in a rush. I've sent you some msgs on chat as well.

I can say this much, it REALLY ISN'T BRAVER to try Ampligen as opposed to Valcyte or cidofovir. I've tried all three and the latter two are MUCH, much harder to tolerate than Ampligen. You could say ampligen's a walk in the park compared to those.

 

[Antares in NYC]

I can say this much, it REALLY ISN'T BRAVER to try Ampligen as opposed to Valcyte or cidofovir. I've tried all three and the latter two are MUCH, much harder to tolerate than Ampligen. You could say ampligen's a walk in the park compared to those.

I haven't tried Ampligen (can't afford it) but I absolutely agree with your statement on Valcyte. I had terrible reactions to that medication, and it even gave me severe insomnia for 3 straight nights. Absolutely terrible experience, so much so that I could not continue the treatment.

 

[Gingergrrl]

You definitely get more than a L. Actually it really depends on how you feel because if you tell them you feel rubbish after the infusion, you'll get a L of plain saline right after the drug is infused but before I reported feeling crappy they gave me like half of that, so it's possible to not have an L if you don't feel bad after the infusion and are in a rush. I've sent you some msgs on chat as well.

I can say this much, it REALLY ISN'T BRAVER to try Ampligen as opposed to Valcyte or cidofovir. I've tried all three and the latter two are MUCH, much harder to tolerate than Ampligen. You could say ampligen's a walk in the park compared to those.

@vli Thank you for letting me know that you get more than one liter of fluid plus saline when you do Ampligen. Not that I will ever be doing it but I was just curious to know. I am sorry I missed your chat messages yesterday and that feature doesn't work on my phone and is not great even on my computer so I rarely use it.

I do want to hear though why you said that Ampligen is a walk in the park compared to Valcyte. That surprised me and I am curious what dose of Valcyte you took and what side effects you had. But in order to not derail this thread, I am going to tag you in another thread that I recently created about Valcyte (in a few minutes) and hope you will share your experience over there.

I haven't tried Ampligen (can't afford it) but I absolutely agree with your statement on Valcyte. I had terrible reactions to that medication, and it even gave me severe insomnia for 3 straight nights. Absolutely terrible experience, so much so that I could not continue the treatment.

@Antares in NYC I am also going to tag you to my Valcyte thread and want to hear about your experiences, especially what dose you took and if Brand vs. generic when you had the insomnia. Thank you in advance for any info!

 

[gregh286]

hi,
anyone from uk know where NK cell test can be done (at home preferably)
interesting old paper from japan on it:http://www.ncbi.nlm.nih.gov/pubmed/1287242

 

[charlie1]

hi,
anyone from uk know where NK cell test can be done (at home preferably)

I'd like to know this also.....

 

[Kati]

I'd like to know this also.....

NK cell function is very sensitive to time, so the fresher the sample, the better. If you decide to ship your blood to a lab former this expensive test (around 500$) you need to consider accordingly.

I haven't been lucky in getting the test done in Canada, unfortunately but apparently others have.

 

[jeff_w]

I'm wondering if it's consistent that most or everyone with ME/CFS has very low NK cells? I had mine tested through quest and on a scale of 8-170 my NK cells were 4. Dr Enlander said that this is very low but normal for this disease. Do other people have counts this low?

On December 15th of last year, my NK Cell Function was 7.

 

[charlie1]

Same here. I have been on daily Famvir for 16 months now, and if anything my EBV and HHV6 titers have gone way, way up. The EBV numbers are off the charts. In terms of symptoms, nothing has really improved.
I tried Valcyte, but he side effects were terrible. I could not continue beyond a few weeks.

I have not checked NK functioning recently, but tested the NK and CD57 count, which were dangerously low a year ago and are now even lower.

Is this normal? What is going on?

Wow. That must be incredibly frustrating/maddening Antares! This thread (and others) make me wonder if I should even both to travel out of country for testing. It sounds like others have had this annoying result to treatment as well. But as mentioned, if the numbers rise or fall, who cares as long as you are feeling better! But are you?

It seems so risky for me to pay out of pocket for travel expense as well the tests and treatments. There will be no insurance involved. To find out that your titers actually INCREASED with treatment and the NK count DECREASED scares me.
Ugh...I've only lately begun to seriously consider seeking the American CFS specialists to help me with my PEM. I'm so confused as to what to do. Nobody can make the decision for me but it sure is a difficult decision to make.
Maybe I'll wait to hear more about the success people may be having with Dr. Enlander as he's the closest to me. I'm considering INIM in Florida also but according to the phone messaging system, new patients are not being accepted.

 

[Gingergrrl]

@charlie1 Not sure if I ever answered the question here but my NK functioning only went from a 5 to a 6 on five mos of Famvir when I tested it in Dec. have now been on Famvir about 7 mos and added a low dose of Valcyte. My goal is to feel better and reverse the IgM titers even if NK func never raises.

 

[Ruthie24]

My NK cell function was originally 6 when tested by my ME/CFS doc, then dropped to 3 and last time was <1. I had been on Famvir since my original test in Jan 2013. Added in Valcyte (along with Famvir) a few months ago and am feeling better but haven't had the labs redone. My titers however also went way way up on Famvir.

 

[Aerose91]

My first test it was 4, on a follow up almost 2 years later it just came back at 3 and all my virus titres were higher as well. It seems to me like a lot of people's NK function doesn't improve much over time. Does that seem to correlate with how people feel?

 

[Antares in NYC]

My first test was 6 in 2013. Last November is was down to 4.
There's no question something's messed up with our immune system, clearly.

 

[catly]

I do wish there was more research on the NK cell dysfunction many of us have (mine has consistently been around 8). Anyway, I saw this article today on a possible new stem cell therapy for SCID (a.k.a "bubble boy disease"). The article also has a cool video.

Forgive me if this has been reported elsewhere on PR.


"Healthy NK immune cells grown from SCID patient-derived stem cells
In the journal Cell Stem Cell, researchers from the Salk Institute for Biological Studies in La Jolla, CA, describe how for the first time, they grew healthy NK immune cells in the lab from gene-edited stem cells derived from the cells of an SCID patient.
While it is still in the preliminary stage, they believe their technique offers the possibility of implanting the "tweaked cells" back into a patient so they can generate a complete immune system.
Such an option would be a huge leap forward. There is currently no cure for SCID, and current treatments - which rely on bone marrow transplants or gene therapy - do not always work.
Senior author Inder Verma, Salk professor and American Cancer Society professor of molecular biology, says:
"This work demonstrates a new method that could lead to a more effective and less invasive treatment for this devastating disease. It also has the potential to lay the foundation to cure other deadly and rare blood disorders."
Gene therapy held great promise for the treatment of SCID. This method, trialed in the 1990s, used bits of virus to deliver the correct genes to cells growing in the patient's bone marrow.
At first, this type of gene therapy seemed to work, but the way the genes were added eventually caused leukemia in some patients.
Since then, other gene therapy methods based on bone marrow transplants have been developed and are effective, but usually only in patients with mild forms of SCID. It is also a very difficult operation to carry out on very sick babies."