My experience with Klimas

[SOC]

Hi Girlwiththedog, Thanks for sharing your story of optimism and hope. If I were on the East coast, Dr Nancy would be the one to see for sure. I agree about Dr Chia's work too. I also believe the statement that many people who recover, or even make significant improvements, are not in the forums. I want to come back to your post and ask a few questions...but for now, I wish you all the best and leave you with the recipe for the isotonic solution I used instead of gatorade. I made it with pure water, good sea salt, organic lemon or lime juice, and natural sweeteners. It tastes much better than gatorade, without the sugar. I made a 1/2 gallon every morning.

http://www.dfwcfids.org/healing/gokhmbrw.htm#homebrew

Thanks for the recipe, Cloud. I can't stand Gatorade or other similar drinks because they are much too sweet. With your recipe I should be able to make a drink that I can tolerate.

Can anyone thing of a reason not to include juice concentrate such as:
http://www.iherb.com/Dynamic-Health-100-Pure-Pomegranate-Juice-Concentrate-16-fl-oz-473-ml/7094?at=0 ?

 

[anne_likes_red]

No reason
My hydration drink recipe is one used in the autism community - very similar to the one Cloud posted - except it uses 1/4 cup pure grape juice per litre as a sweetener.

Thanks for the recipe, Cloud. I can't stand Gatorade or other similar drinks because they are much too sweet. With your recipe I should be able to make a drink that I can tolerate.

Can anyone thing of a reason not to include juice concentrate such as:
http://www.iherb.com/Dynamic-Health-100-Pure-Pomegranate-Juice-Concentrate-16-fl-oz-473-ml/7094?at=0 ?

 

[SOC]

No reason
My hydration drink recipe is one used in the autism community - very similar to the one Cloud posted - except it uses 1/4 cup pure grape juice per litre as a sweetener.

Thanks, anne!

 

[ahimsa]

I can't stand the taste of Gatorade, either! Those type of drinks are too sweet and just make me feel icky for some reason. I mostly take salt tablets (e.g. Thermotabs or Bio Salt, tablets containing both sodium and potassium) and a time released potassium (a prescription pill like K-Dur) to help with my electrolyte balance.

If I want a drink other than water then I use Nuun tablets (lemon-lime and tri-berry are both okay flavors for me, can't vouch for the others). These tablets have very little sweetener. You drop one tablet into 16 ounces (approx 1/2 liter) of water.

Another beverage option, if you want some actual calories along with your sodium/potassium, is a veggie drink like V-8. I almost forgot another option, Pedialyte, but it's nearly as bad tasting (to me) as Gatorade. I do think Gatorade tastes even worse--but for those who don't mind it, I'm sure it works!

Getting back to the original subject, many thanks to thegirlwiththedog for telling us about your visit to Dr. Klimas.

 

[thegirlwiththedog]

Since Imunovir is approved in Canada and not the US, it's hopeless to think that insurance might cover it, right?

I had some Nuun today, and it's pretty tasty. Kind of pricey, though. I figure I'll get some and throw it in my backpack, so that when I make the great three-block trek to the neighborhood cafe and then sag, I have a little pick-me-up right on hand.

 

[Kati]

Since Imunovir is approved in Canada and not the US, it's hopeless to think that insurance might cover it, right?

immunovir is a prescription drug in Canada but it doesn't mean that Canadian patients can get it. 3 local doctors said no to me, which left me to order from Gold Pharma, ship to the US and smuggle across the border. Now I get inosine the same way ( it is not an approved supplement in Canada). Actually Nancy thought it was quote amusing that I have to smuggle it. It's not that I'm getting high on it or anything...

 

[thegirlwiththedog]

So you're also a patient of Klimas's, Kati? How has your experience been? Do you think you've gotten better under her care?

 

[Kati]

I have had a wonderful experience with Nancy and Hannah. It is wonderful to be validated and not fight for a doctor to believe that your symptoms are real. I went twice, last June, and at then end of January. I have gotten sicker. In January I went for proof of disability. I feel that with the exercise and cognitive test I have very good proofs that I am unfit for any work. Nancy wrote a letter supporting that, and I can't thank her enough for that. It ended up that I was already acidotic before doing the VO2 test, and they didn't let me do the second test because I was worse than the first day. She attached her resume to my disability letter, a resume that is 30 pages long!!!

i have tried 3 months worth of oxymatrine, and I didn't feel it was helping but in the end my Coxsackie b virus titers went down, and I dropped a strain. Now I am2 weeks into Inosine. whether I improve or not on it doesn't really matter really, I would recommend Nancy's expertise to anybody. and If my health allows (it's a long long trip over there) I would go back for follow up. she does skype follow up which are well appreciated.

 

[LaurelW]

In regards to only the sickest of us being here on the forums, though it may be true that people leave because they are harassed for getting well, I think another explanation is that they are just too busy being out living their lives to spend much time on the internet. That was certainly true of me during a 5-year recovery period. I wanted to distance myself from being ill as much as possible and act like a normal person.

 

[thegirlwiththedog]

I'm glad to hear that Nancy continues to have things to offer, Kati. And I think LaurelW's explanation was the primary thing Nancy was thinking of in her comment.

 

[thegirlwiththedog]

One more bit of info that may be useful to someone, now or in the future. Here's the dosing schedule NK uses for Imunovir:

Days 1-2: Take 1/2 tablet once a day
Days 4-6: Take 1 tablet once a day
Days 7-9: Take 1 tablet twice a day

If at any point you feel like you are not tolerating the Imunovir, either stay at that level (i.e., don't increase) or drop down a level. When you're read move on to the next dosing level.

After these starter days, move to this schedule:
Week 1: 1 capsule 3x/day Monday through Friday. None on Saturday or Sunday.

Week 2: 2 capsules 3x/day Monday through Friday. None on Saturday or Sunday.

Continue alternating weeks. Odd weeks follow week 1, even weeks follow week 2.

Give it 4 months to judge response rate. After 6 months, repeat labs.

She orders it from Bill Chick at Rivex Pharma: 1-800-784-0975 ext. 242, Fax: 1-800-784-0976. It does require a prescription.

 

[camas]

One more bit of info that may be useful to someone, now or in the future. Here's the dosing schedule NK uses for Imunovir:

Wow. Thanks so much for sharing all this detail with us! I'm printing this out and taking it to my doc on my next visit.

 

[hollie9]

How long does it take to get in to see Klimas...like other cfs docs, over a year?

Is the cost of Imunovir high?

 

[leaves]

Nope, she doesn't have a long waitinglist if u see her private clinic. For imunovir prices see goldpharma.com

 

[heapsreal]

http://www.pharmplexdirect.com/imunovir-tablets-500mg-p-3669.html
another source of immunovir.

cheers!!!

 

[ukme]

Thankd for posting this girl+doggie, and sharing your insights. I would be interested to hear what she recommends you to take should your tests for cortisol come out low.

 

[thegirlwiththedog]

It was six weeks from when I called to when I saw her at her private clinic. The disadvantage of seeing her there rather than at U Miami (where it takes a year or two to get an appointment) is that she doesn't take insurance at her private clinic; you have to send the records to your insurance company, and then they pay whatever they pay, which may be well less than what she charges (though she says that she set her prices to be in the middle of what PPOs cover).

Immunovir costs $110/mo, including shipping.

My next appointment with her is on the 15th, and I'll definitely post an update.

 

[Hope123]

One more bit of info that may be useful to someone, now or in the future. Here's the dosing schedule NK uses for Imunovir:

Days 1-2: Take 1/2 tablet once a day
Days 4-6: Take 1 tablet once a day
Days 7-9: Take 1 tablet twice a day

If at any point you feel like you are not tolerating the Imunovir, either stay at that level (i.e., don't increase) or drop down a level. When you're read move on to the next dosing level.

After these starter days, move to this schedule:
Week 1: 1 capsule 3x/day Monday through Friday. None on Saturday or Sunday.

Week 2: 2 capsules 3x/day Monday through Friday. None on Saturday or Sunday.

Continue alternating weeks. Odd weeks follow week 1, even weeks follow week 2.

Give it 4 months to judge response rate. After 6 months, repeat labs.

She orders it from Bill Chick at Rivex Pharma: 1-800-784-0975 ext. 242, Fax: 1-800-784-0976. It does require a prescription.

This is common sense but just a reminder: what works for one person might not work for another.

I also see Klimas and I have a different dosing schedule from what is listed above. I think she varies it depending on weight, size, age, etc. perhaps. Dr. Klimas also tests for NK function and other labs beforehand so that she also may or may not treat with particular items depending on your situation.

 

[thegirlwiththedog]

Very wise remark, Hope123.

How has your experience with Klimas been? Have you gotten better under her care?

 

[Chris]

Many thanks to Girlwiththedog and Kati and others for telling us about Klimas--she does sound great. Kati, glad you finally found some Immunovir; and could you tell us her schedule for Inosine, and any thoughts she communicated on how it compared with Immunovir? There was an inconclusive thread on this a while back--I have a bit of Inosine, but have been holding back on trying it.

I have been using some AHCC, with I think modestly good results, and have a vague memory that Klimas said something good about it in one of her videos--does anyone remember that?
Thanks and best wishes, Chris