Might go to Dr. Klimas' office

[Ocean]

Thanks for the antiviral info everyone. Barring a miracle (lottery winning perhaps) I definitely can't afford valcyte at the prices quoted here. I am getting some testing done soon, so it will be good to see if I even have high levels for the tests that would possibly call for valcyte use anyway. Then perhaps help from Roche could be a possibility or a different antiviral if it makes sense medically.

Madie, I'm so glad to hear you took the next step, I can't wait to hear how things go. I hope you get a lot of help!

 

[Ocean]

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.

SOC, Was the 50k your part after insurance paid?

 

[heapsreal]

might be able to buy cheaper generics online?? still $$ though.
a lower dose of valcyte with famvir or valtrex would make it more affordable and possibly just as effective. What im doing anyway.

cheers!!!

 

[Ocean]

Thanks Heaps. I will keep all this in mind and after I get my testing done ask the doctor I'm seeing now more about it. I may have to go to a specialist eventually but hopefully my current doc can give me some info on all this too. I will definitely update everyone if I get anywhere with it.

 

[SOC]

SOC, Was the 50k your part after insurance paid?

No, that was the total amount.

 

[OverTheHills]

Hi all,
I am planning to go see Dr Rey in late August if I can get in.

My Mum who died recently was keen for me to pursue more treatment options; so my share of her estate will fund me to get there, and cover an appointment and some drugs. Its a long way from NZ but although I'm fairly limited physically (how long will the queues be in the airport I wonder?) I can withstand quite a bit of hustle and bustle without overload. With pacing and preparation I'm sure I can manage.

I have chosen Dr Klimas' clinic because I had very good but very temporary success with immunovir, which I know is a mainstay of the Klimas approach. I'm hoping they will have the experience to guide me how to get longer term benefits, and it will be good to get access to some more detailed testing (eg NKcells) at least once in my life.

I have about a million questions bout the practicalities(which I will be directing to Hannah the Office Manager later today, starting with which airport to fly into, where to stay, what can be done in the one appointment and what can be done in remote followups etc (a second visit will cost big travel money ££££££ again )). Obviously I have read this thread (and remember some of it!) and there are useful tips there which I will reread/write down. I will hope for PMs from those who have been already, and will post about my experience as things develop.

OTH

 

[maddietod]

OTH, my understanding is that you can do phone follow-ups for a year, but by law they have to see you yearly to keep you as a patient.

Miami has its own international airport, and I believe the clinic is a short ride from the airport. The hotel I chose, Kendall hotel and suites (http://www.kendallhotelandsuites.com/) is a few blocks from the clinic.

Good luck!

Madie

 

[SOC]

O The hotel I chose, Kendall hotel and suites (http://www.kendallhotelandsuites.com/) is a few blocks from the clinic.

Let us know how that hotel works for you. I've got to make another trip this summer and don't plan to return to the hotel I stayed at last time.
Thanks!

 

[TheMoonIsBlue]

Ocean, and others

Just wanted to remind everyone to look into the patient assistance program that Roche offers.

I have no idea what qualifications have to be met. Certainly you have to have an income below a certain level. And possibly have no insurance, insurance that will not cover valcyte at all, or they may help pay if you co pay is extremely large (deductibles usually are not considered, though, that is through the patient and their insurance company, many people have large deductibles on prescription drugs and thus have to pay thousands up front).

But I know some patients in the US have received Valcyte for free from Roche.

If you live outside the US, I don't know, but definitely look into if they have patient assistance, what diagnosis is needed, etc. I'd hate for someone to not consider treatment because of cost IF there is a possibility that the drug company is willing to supply you with free meds.

There are a lot more freebies from drug manufacturers than one would think, it is just a matter of finding out about them, filling out paperwork, and of course meeting qualifications.

Unfortunately, it is much less likely that patients will receive meds for free if they are being used to treat "Off Label Conditions".

 

[SOC]

Unfortunately, it is much less likely that patients will receive meds for free if they are being used to treat "Off Label Conditions".

Probably true. However, if you have a high CMV or HHV-6 titre, you should request free meds on the basis of that, not on the basis of needing it for CFS. In other words, your ME/CFS diagnosis is probably irrelevant; your persistent CMV/HHV6 infection is the diagnosis Roche may care more about.

 

[TheMoonIsBlue]

Probably true. However, if you have a high CMV or HHV-6 titre, you should request free meds on the basis of that, not on the basis of needing it for CFS. In other words, your ME/CFS diagnosis is probably irrelevant; your persistent CMV/HHV6 infection is the diagnosis Roche may care more about.

Oh yes....never ever say your diagnosis is CFS or ME. You'd be using valcyte for HHV6 or CMV anyways.......not CFS or ME.

But still, I think Valcyte is only technically approved for CMV in immunocompromised transplant patients with HIV. If you have "just" CMV, they may cover....it doesn't have any approval at all for HHV6.

If there is anyone who has gotten if for free or had a huge co-pay covered, maybe they could chime in. Again, if you are outside the US, with a National Health Care System, it could be totally different. But I know some Canadians who have gotten Valcyte thru their NHS......don't know what process they had to go thru.

Drug companies are just more likely to give to give to patients when it is for the use they spends millions of dollars getting it approved for.

 

[maddietod]

Update about travel to the clinic:

For any questions about the Miami airport, handicapped services, shuttles, taxis: http://www.miami-airport.com/contact.asp click on the tab "taxi and shuttle service". I just talked for a half hour with Rosie Leslie, the contact person given there, and she's a fount of useful information. SOC, she would very much like to hear your story of wheelchair-fail, and there's an email address if you prefer that to calling.

Rosie strongly advises using wheelchair services at the Miami airport. It's huge, and the lines are massive. American Airlines is their busiest gate.

The airport is not close to the hotel and clinic. Taxi, no traffic, about 30 minutes, probably cost about $50. The shuttle will cost me $25-$30, and of course will take a lot longer as it drops people off. Returning, the shuttle will get me to the airport 2 hours ahead of flight (3 hours if you're international) and allows 1-2 hours for traffic. Shuttle information and online reservations at www.americanshuttle.com.

There's a free shuttle between the Kendall hotel and the Baptist Hospital. The CFS clinic advertises itself as being next door to that hospital.

The hotel offers free breakfast, and they just told me that it's a hot all you can eat buffet with custom omelets. So if I bring my own bread for toast, I'll be set. The hotel has a restaurant open for dinner at 4, but not for lunch. There's a "bistro" close by, and one walkable restaurant, Havana Harry's.

 

[SOC]

madietodd -- Thanks so much for sharing all your good Miami travel info. I used to be good at that kind of organization. **sigh** Oh, well, moving on... I will certainly call Rosie Lee and share my story. It sounds like she's interested in improving the situation, which would be a blessing for all wheelchair users there.

I'm trying to remember how close the clinic was to the hospital. I'll ask hubby, he might recall better since he was driving.

The hotel sounds nice -- better than the place we ended up, which was okay, but not great.

 

[OverTheHills]

@ Madietodd thankyou, such investigative powers!

Good accomodation is going to be important for appointments in August: considering the likely weather I don't forsee much strolling around or sitting by the pool. Similarly travel insurance given the hurricane potential.

OTH

 

[bigmama2]

hi everyone,

thanks for sharing all the info. ive had cfs for many many years now. and i live in florida! i would like to see dr klimas/dr rey. i called and they said i must have a referral from my primary care dr. so today i had to see that dr for yearly check up- regular bloodwork, medication refills, etc and i asked about the referral. i could see in his face that he was like "oh brother here she goes again with the cfs stuff" and he said well, lets get the results of your bloodwork first, and come back and see me in a week. in other words- NO. (in the past he has told me that he is not sure if cfs is a "real illness" or not.) i kept my cool, and said ok, i'll be back next week. and i will ask for referral again. if he wont give it i will find a new primary care dr- problem is sadly many still dont believe that cfs is real. very aggrivating!

the symptoms that are bothering me the most right now- are
1. the mild flu like feeling (with no fever)- tired, body aches, feel like i have a fever, feel sick/immune system activated.
2. lungs ache.
wondering if these 2 are connected or not. want them fixed if possible!
thanks for reading,
bigmama2

 

[heapsreal]

hi everyone,

thanks for sharing all the info. ive had cfs for many many years now. and i live in florida! i would like to see dr klimas/dr rey. i called and they said i must have a referral from my primary care dr. so today i had to see that dr for yearly check up- regular bloodwork, medication refills, etc and i asked about the referral. i could see in his face that he was like "oh brother here she goes again with the cfs stuff" and he said well, lets get the results of your bloodwork first, and come back and see me in a week. in other words- NO. (in the past he has told me that he is not sure if cfs is a "real illness" or not.) i kept my cool, and said ok, i'll be back next week. and i will ask for referral again. if he wont give it i will find a new primary care dr- problem is sadly many still dont believe that cfs is real. very aggrivating!

the symptoms that are bothering me the most right now- are
1. the mild flu like feeling (with no fever)- tired, body aches, feel like i have a fever, feel sick/immune system activated.
2. lungs ache.
wondering if these 2 are connected or not. want them fixed if possible!
thanks for reading,
bigmama2

your best bet might be to post a thread asking others here about dr's in your area that treat cfs seriously. Sounds like your current doc if he is going to be any good that your going to have to train him yourself, makes it very hard.

cheers!!!

 

[maddietod]

Do you need the referral because of your insurance plan? My insurance is self-pay high-deductible BC/BS, and they didn't ask for a referral.

But I agree with Heaps. Maybe call around doctor's offices and see what reaction you get to "How many CFS patients do you treat?"

 

[Sushi]

Or, I don't know whether Dr. Klimas's office would do that, but since you are in Florida, they might know of primary care doctors in your area that are willing to work with them.

Best wishes,
Sushi

 

[bigmama2]

thanks for the ideas. i had gone to a local cfs support group a few times and asked if anyone knew of any primary drs around here that can handle cfs and they all said no. i see my dr again next week and i will try again for the referral. if its a no go- i will try to find another dr- might use some of your ideas.

my dr here - i think he means well, and does care and want to help- he just doesnt really believe in cfs. so we kinda butt heads. AND when i told him about the lungs aching and the fever sensation- he had the nerve to say it could be psychosomatic. that was pretty obnoxious of him. its not like i am a hypochondriac and always in his office. i hate going to see drs and i had not seen him for over a year and a half! which he also scolded me about. and yes i want to educate him on cfs w bringing in photocopies of cfs info from CDC, webmd, etc. but we all know that drs dont take too kindly to their patients trying to educate them. sooooo we shall see---
bigmama2

 

[Sushi]

my dr here - i think he means well, and does care and want to help- he just doesnt really believe in cfs. so we kinda butt heads. AND when i told him about the lungs aching and the fever sensation- he had the nerve to say it could be psychosomatic. that was pretty obnoxious of him. its not like i am a hypochondriac and always in his office. i hate going to see drs and i had not seen him for over a year and a half! which he also scolded me about. and yes i want to educate him on cfs w bringing in photocopies of cfs info from CDC, webmd, etc. but we all know that drs dont take too kindly to their patients trying to educate them. sooooo we shall see---
bigmama2

Please don't set yourself up for more "M.D. abuse--even though it is not intended as abuse! It just isn't necessary (and of course isn't good for you). You're right, few want to be educated, so you spend the appointment trying to teach them and then pay them for their time!

I think Dr. Klimas once said something like, "Yes, ME/CFS patients have post traumatic stress disorder, but the cause is not being taken seriously by their doctors." Well, that is a very loose quote but probably the gist of it.

Sometimes it is just time to move on to a doctor who will respect your symptoms.

Best wishes with this!
Sushi