Might go to Dr. Klimas' office

[Sushi]

...GcMaf I read $400 a month, but again, not sure what kind of dose that is or how typical.

The price of GcMAF varies a lot from doctor to doctor--even those using the same source. I am paying about $45 - $50 a month for it taking a moderate to low dose.

Best,
Sushi

 

[Sparrow]

The price of GcMAF varies a lot from doctor to doctor--even those using the same source. I am paying about $45 - $50 a month for it taking a moderate to low dose.

Best,
Sushi

That doesn't sound so bad. Anybody have details on any of the others? (I'm not at all an expert - just try to jot down numbers when somebody mentions them in passing. I'm hoping some of the others are on the very high end too!).

 

[Ocean]

I would be interested in this as well. I think the last time I looked into it, the figure was something like $20,000 a year for Valcyte, but I'm not sure if that was name brand vs generic or what kind of dosing they were talking about. Could be out of date as well. I want some quite badly, but we just couldn't swing that much and my husband is working from home now so we've lost our drug coverage.

Equilibrant is listed on their website as $49.99 for 90 tablets. Looks like they recommend up to 6 tablets per day. So that would be $1216.42 per year if you took it every day.

I think I recall somebody mentioning Immunovir was around $100 a month or so. Again, though, I have no idea what kind of dose they were on or where they were getting it.

GcMaf I read $400 a month, but again, not sure what kind of dose that is or how typical.

I would rather go guaranteed high quality with this kind of stuff, I think, if I was going to shell out that much for it anyway. I'm torn on name brand vs. generic where it's available. I know it's not supposed to make any real difference, but I've had medications before where it really did. Something about the way the rest of the pill was put together or the supporting ingredients maybe, I don't know. But I know that the name brand and generic versions did REALLY different things for me (...Neither one did something good, mind you, but they both did something different. ) .

Holy moly on the possible Valcyte price! Wow, I'm astounded. Maybe I shouldn't bother looking into finding a doctor who'd prescribe anitivrals if that is the type of cost I'd be looking at. I'll definitely have to do more research on that. I agree with you about the brand vs. generic not being the same, I've had that experience many times.

 

[Sparrow]

Holy moly on the possible Valcyte price! Wow, I'm astounded. Maybe I shouldn't bother looking into finding a doctor who'd prescribe anitivrals if that is the type of cost I'd be looking at. I'll definitely have to do more research on that. I agree with you about the brand vs. generic not being the same, I've had that experience many times.

I know. It's huge. I'm hoping that maybe that person had an unusual experience, that they were exaggerating, misinformed, or that the price is outdated... I would really, really like to try Valcyte, but don't have drug coverage right now (and even if I did, I think my last policy capped out at $10000 per year). Still, it would be worth it if it worked. There must be somebody here who's used it who can give us an estimate. SOC? Anyone?

I think that Valcyte is maybe the most expensive of the antivirals (and maybe by a wide margin). ...Unfortunately also the one I have the most interest in trying...

 

[Hope123]

Dr. Klimas is one of my doctors as well as another respected ME/CFS specialist. I'm pretty skeptical of people who claim to be CFS specialists short of the people who have been in it for the long haul like Dan Peterson, David Bell, Nigel Speight, Peter Rowe, Natelson, etc.

I think Dr. Klimas is great! She doesn't only look at one aspect of the illness even if she is an immunologist; she also looks at gut stuff, orthostatic intolerance, sleep, pain, etc. Very much a one-stop shop with most of the tests you need.
I think if one can make the trip, one should try to see her at least once. My sense is she is more affordable than some people think (I pay out of pocket entirely) especially if they are now getting insurance to cover some of the testing. I also believe Klimas is ethical and not out to gouge people of their $$.

In terms of meds, she really does customize them to you and she does not just based on symptoms but also on blood tests initially and on follow-up. She will write the scripts for you and help find the unusual meds. Some of the meds aren't overly expensive -- Immunovir about $100/ month for higher dose; low dose naltrexone $30/ month. I advise people to do some comparison shopping for antivirals; there are vast differences between pharmacies sometimes. Hundreds of dollars difference for Valcyte when I checked before.

Some of the blood tests are run personally by her colleagues at U of Miami so they are more careful and precise than commercial labs. You can also send blood to her lab if you are a patient through Fedex. She does require you see her in person at least once a year.

However, as with all CFS specialists, you have to go in with realistic expectations. An honest specialist will tell you there is no standard treatment or cure although some people do get or feel much better with treatment X. They shouldn't overpromise. So keep that in mind when you are seeing someone or spending lots of money.

 

[Ocean]

Sparrow, how do you tag people like you did in your post above? Is there something that makes Valcyte superior to the others or does it just depend on each individual what works best? Do you know how long people usually take antivirals? With high costs, it may be on thing to somehow find a way to pay for it for a while but if it's a long-term thing that may totally rule it out for many. Thanks Sparrow.

Hope123, thanks for sharing your experience. Other than LDN and immonovir and recommending electrolyte drinks, are there other things she tends to give for CFS? I'm not looking for meds for for pain or sleep, so I'm wondering if there would be more to it than those three things I often hear about her having prescribed. It doesn't sound like she often gives antivirals, or does she?

 

[Sparrow]

Hmmm... Looks like $2000 a month for Valcyte according to the source listed here. Others might be better equipped to answer the antiviral questions and address differences between them, since I have them on my wish list but haven't yet taken any. As I understood it in terms of time period, some people went into remission and were okay once they stopped taking them. Some people do better if they stay on them. Some people were fine off them for a while, but then needed a bit more some years later when they relapsed.

As for the tagging, I was partly testing it out there to see if it worked. Noticed it on another thread and assumed it was a new feature of the new forum. Just type @ then the member's name, and it seems to pop up a little list of people named something like that and their pictures for you to choose from. Just click on the one you want, and when you post it should tag them automatically.

 

[Ocean]

Thanks Sparrow. That is so expensive. I can't imagine how I could afford that especially for any significant amount of time. I wonder if there are other antivirals that are much cheaper. I had no idea the cost was so high. It's really discouraging. All this time I thought the obstacle would be in getting a doctor to prescribe it. Now I see that is nothing compared to the obstacle presented by the cost. Thanks for the info about tagging, I was wondering how to do it. It makes sense that it's with the @ sign like on Facebook and other places.

By the way, is there a reason you prefer trying Valcyte over the other options? I don't know anything about any of this, so I don't know what the differences might be.

 

[SOC]

Holy moly on the possible Valcyte price! Wow, I'm astounded. Maybe I shouldn't bother looking into finding a doctor who'd prescribe anitivrals if that is the type of cost I'd be looking at. I'll definitely have to do more research on that. I agree with you about the brand vs. generic not being the same, I've had that experience many times.

I paid about $50,000 per year for Valcyte ($100,000 per year for two of us). Fortunately insurance paid for part of it. I wouldn't trust a generic at this point. Even then, it took every cent we had. Worth it to get daughter into remission and me better, though. I'd do it again, not that I could afford it again.

 

[Sushi]

...I wonder if there are other antivirals that are much cheaper. I had no idea the cost was so high. It's really discouraging. All this time I thought the obstacle would be in getting a doctor to prescribe it. Now I see that is nothing compared to the obstacle presented by the cost.
By the way, is there a reason you prefer trying Valcyte over the other options? I don't know anything about any of this, so I don't know what the differences might be.

There is quite a difference in antivirals and you really need a good doc to prescribe the right one. Valcyte has a reputation for being harder to take (and in some cases more effective), but their are many other antivirals like Valtrex that are less expensive. The key is to take the right one for the right length of time and for this you need a good doc.

But I wouldn't rule them out because of the price because the prices of the different anti-virals vary a lot.

Sushi

 

[SOC]

Sparrow, how do you tag people like you did in your post above? Is there something that makes Valcyte superior to the others or does it just depend on each individual what works best? Do you know how long people usually take antivirals? With high costs, it may be on thing to somehow find a way to pay for it for a while but if it's a long-term thing that may totally rule it out for many. Thanks Sparrow.

Hope123, thanks for sharing your experience. Other than LDN and immonovir and recommending electrolyte drinks, are there other things she tends to give for CFS? I'm not looking for meds for for pain or sleep, so I'm wondering if there would be more to it than those three things I often hear about her having prescribed. It doesn't sound like she often gives antivirals, or does she?

Valcyte is the only one (theoretically) that can get at CMV and HHV-6. I doubt any doctor would prescribe it if you didn't have high titres to one or the other. Some people are finding that Famvir has some effect with those infections and it's a lot cheaper. I think Drs Klimas/Rey are trying Famvir and immune modulators together, which is substantially more affordable.

No antiviral is cheap, but Famvir and Valtrex are a lot cheaper than Valcyte. They both work for some of the other herpesvirus infections and may have some impact on CMV and HHV-6.

Hope123 is right on the money, IMO, about Drs Klimas/Rey. They have a large range of treatment options available, so whatever your tests show, they can tailor a treatment for you. As far as I can tell, they do prescribe antivirals when indicated, but will usually try to improve the immune system so that it can fight viruses on its own first (or at the same time).

 

[aquariusgirl]

is $2,000 a month a co-pay or out of pocket?

 

[Sushi]

Also, Nexavir is supposed to deal with (not exactly kill, but deal in other ways--something like healing the cell wall so the viruses can't enter and can be targeted by the immune system--very much a layman's explanation) EBV, CMV & HHV-6 (that's from memory, but I think that is right). So you would probably want to combine it with an immune modulator.

My insurance covers most of it.

Sushi

 

[heapsreal]

I have found famvir 250mg twice a day helpful and buy my famvir from magic pharma, costs about $75 a month, i buy he 500mg tabs and cut them in half as the 500mg are cheaper then 250mg on a strength for dollar basis.
http://www.magicpharma.com/index.php?cPath=33_188&osCsid=7e582d1e08b09cd8e28062c11611929a

 

[maddietod]

I just booked my appointment/flight/hotel. The first available appointment was August 8th. When I first contacted them in April, they had multiple openings in May.......so they're suddenly very busy.

 

[searcher]

You can often get Valcyte for free directly from Roche under their Patient Assistance Program if you earn less than a certain income (I think it may be $60K a year.) I am not sure if the program applies to people outside the US, but I believe I have heard that it applied to Canadians as well. They don't care about diagnosis, so this means Valcyte can actually end up cheaper than the other drugs/supplements.

 

[SOC]

I just booked my appointment/flight/hotel. The first available appointment was August 8th. When I first contacted them in April, they had multiple openings in May.......so they're suddenly very busy.

***Warning*** Do not eat at restaurants near the airport. I was told that after hubby and I got food poisoning from one of them.

Also, if walking is any kind of problem, do not give up your airport wheelchair attendant until you are in your car. It is very awkward to pick up a person in a wheelchair at the Miami Airport without an extra person. The pick-up lanes are not next to the terminal (several lanes and medians to cross first) and your caregiver cannot leave the car to get you and push you to the car.

It's one of those getting the fox, chicken and feed across the river things. You have a car, luggage, and a person in a wheelchair and you cannot leave the car or the luggage unattended for even 5 seconds. How do you get the person in the wheelchair to the car? Answer? You man-handle the wheelchair and luggage across several lanes of traffic and leave them on a median under a roof which holds in all the wonderful noise and vehicle fumes while you go get the rental car. By the time everything is in the car, everyone is sick and annoyed as hell.

 

[Sushi]

I just booked my appointment/flight/hotel. The first available appointment was August 8th. When I first contacted them in April, they had multiple openings in May.......so they're suddenly very busy.

Congratulations on taking the plunge!

Sushi

 

[heapsreal]

I just booked my appointment/flight/hotel. The first available appointment was August 8th. When I first contacted them in April, they had multiple openings in May.......so they're suddenly very busy.

maaadie!!
keep us updated on how u go, good luck and i hope you start improving soon.

cheers!!!

 

[maddietod]

Thanks for the good wishes and tips! SOC, I will avoid airport food! I don't use a wheelchair, so that's one struggle I can avoid.

This appointment is the outcome of 2 weeks of horrendous gut symptoms, which I've never had before. I realized I'm in way over my head trying to figure this all out by myself. I've also made an appointment to finally have a local doctor - it's just money, right? Because very soon the last of my kids moves out, and if I get sick like this with not even a doctor to call.........hmmmm, not smart. It also gives me a local person to support what Dr. Rey advises.