Might go to Dr. Klimas' office

[Marg]

HI Marg,
I thought Dr. K and Dr. R usually use Famvir. Did they give you a reason they chose Acyclovir? (I know Acyclovir is Dr. M'/stanford's antiviral of choice for EBV, so wondering what's best for this/why chosen...)
What are your viruses?
Thanks:0)

When she started taking about it she said it was the least toxic and cheap and she liked it. I had some GI issues at first but thye have passed. I am feeling quite good, I am to take it for a yeat. I went to 4 on the Equilibrant still at only 2 on the Imunivor.

I am waiiting for the products for an herbal parasite and bacteria killing the small intestine. I have no idea how long I have had it or where I got it. One has arrived so the orthers hsould be along soon. I am anxious to get started. Has anyone done that..

 

[Marg]

Oh forgot to add the virsus EVB Cocsackie and HHV6. They had improved at the last testing but still some activation so Acyclovir was added.

 

[maddietod]

So, remember that NK "diet"? That's anti-oxidants? Dr. Rey told me that if it didn't help my sleep within 6 weeks, I'd have to have a sleep study.

I only remember waking up once last night, instead of my normal 4 times. And by normal, I mean that every night I wake up at least 4 times.

It was my second night on full doses of everything, and the first night where I took most of the fish oil at bedtime instead of in the morning.

Fingers crossed!

 

[SOC]

It was my second night on full doses of everything, and the first night where I took most of the fish oil at bedtime instead of in the morning.

It makes a difference what time of day we take fish oil? I've always spread mine out over the day.

 

[maddietod]

It makes a difference what time of day we take fish oil? I've always spread mine out over the day.

I don't know. It just seemed that I was sleeping better when I took some at night, so I upped it last night. I had always taken it in the morning.

 

[maddietod]

I just had my follow-up phone call with Dr. Rey. Guess who has Lyme? Yes, I was tested years ago, so either that was a false negative, or this is new-ish.

It was a lot to take in, and I didn't have the test results, but I think she said I had chronic and acute lyme. For sure she said I have only 2 bands, and given my total immune picture she's just treating me with with doxycycline for 6 months. Yes, I'll be taking probiotics (and getting liver and kidney tests monthly).

Lots of stuff is normal, which is wonderful to know. Thyroid, cortisol, the hepatitises, coxsackie....all no problem.

I have mild parvo, epstein barr, and roseola (HHV-6) activation. She's hopeful that with lyme treated, my immune system will be able to control these.

My natural killer cell count is normal, but they're not doing anything. Like a big army just hanging out. She's waiting on one test relating to this, but again, she's not going to add any other treatment until the lyme is under control.

My vitamin D has dropped from 50 a few months ago to 35 now, despite a year of supplementing. She wants to see it between 50 and 70, so I'm adding 2,000 units in liquid form to my current pill.

I have to get a neuro sleep test here.

I won't have any news until I go back down to Florida in 6 months to get all of the immune tests redone........unless of course I start feeling fabulous from the antibiotic!

 

[SOC]

I just had my follow-up phone call with Dr. Rey. Guess who has Lyme? Yes, I was tested years ago, so either that was a false negative, or this is new-ish.

It was a lot to take in, and I didn't have the test results, but I think she said I had chronic and acute lyme. For sure she said I have only 2 bands, and given my total immune picture she's just treating me with with doxycycline for 6 months. Yes, I'll be taking probiotics (and getting liver and kidney tests monthly).

Interesting. I only had 2 bands when I was tested several years ago, but I was told that was not a positive result -- that more bands were needed. I don't think Dr R ran a Lyme test for me when she did my first set of tests this year, though.

Congratulations on turning up another bug to treat! My feeling is that the more infections we clear out, the better we'll feel, even if it doesn't cure the root illness. Good luck!

 

[Little Bluestem]

I won't have any news until I go back down to Florida in 6 months to get all of the immune tests redone........unless of course I start feeling fabulous from the antibiotic!

Here's Hoping!

 

[maddietod]

SOC, I wonder if it depends on the lyme test used. My earlier test was negative because I didn't have enough bands. I'll compare the tests when I get my hard copy.

 

[Seven7]

Sorry to here about lyme. I know this lady dealing with it and is bad stuff! Good luck and happy you found it to treat it!

 

[maddietod]

I've just posted my tests and results here: http://forums.phoenixrising.me/index.php?threads/klimas-clinic-tests-and-results.19350/#post-296059

I hope this is useful to people wondering what tests Drs. Rey and Klimas do. I asked for the Lyme and cortisol tests, but I think the rest are standard.

 

[November Girl]

Sally, how long have you had this model? We looked at it today, and I like it a lot, but the online reviews are pretty bad.

I have a Pride Traveler GoGo Elite. I only need it for large stores now. It is really nice, very comfy. Very fast, I just love it. It is fun to ride on. This one is very easy to get in all of the small isles in a store since it has three wheels. Elevators are easy also.

 

[Sallysblooms]

I think we bought it last Jan. I don't remember seeing a bad review. I have read many on Spin Life etc. Spin Life has hundreds. A lady we talked to at a doctor's office LOVED hers so we bought it. The lady at the store for scooters said it is the best selling one. We have never had a problem. I just wish I had it two years earlier when I needed it more and we used my w.chairs. W.chairs are awful when shopping. This is perfect and small for isles at stores like Bed, Bath and Beyond, etc.

If we ever do have a problem, we can just take it to the store to be fixed or whatever. They work on them there. Great place.

We never had to do anything. It was all put together and ready to go for us.

 

[Tammy]

Sally, How do you transport the scooter? Do you have to take it apart......or do you have a lift on your vehicle?

 

[November Girl]

thanks Sally - I'll go take a look at spin life

 

[Sallysblooms]

Tammy, we take it in our SUV. It can be taken down to five pieces I think. I forget. Hubby takes it out and puts it in the car. He also charges it up, ha. I just drive it.

 

[Tammy]

I would love to have a scooter...............but don't have the manpower to break it down.......load it ............unload and put together again! I will have to look into how much it would cost to get a lift on the back of my mini truck.

 

[November Girl]

Tammy, I'm seriously considering the Travel Scoot for just that reason. The battery is easily removed, and then the scooter itself is 29 pounds. It can be broken down further as well if that is to heavy. It's very expensive, but you don't need a lift, and it's easy for airline travel, or stashing in someone else's car.

http://www.usatechguide.org/itemreview.php?itemid=1420

I would love to have a scooter...............but don't have the manpower to break it down.......load it ............unload and put together again! I will have to look into how much it would cost to get a lift on the back of my mini truck.

 

[SanDiego#1]

Madie, I'm thinking about this in the back of my mind too if things don't pan out for me locally.

In addition to experiences I'm curious about costs including for testing and even some possible medications, as well as what's it's like to work with her from afar. Does she do followups by phone, etc., how often are you expected to see her in person and all that. Do you have to have a local doctor who's willing to work with you. I planned to contact their office and ask all this but it wouldn't hurt to hear others' experiences too.

My one concern with Dr. Klimas was that unlike Enlander I don't think she offers GcMAF. I don't know if there is a way to find out in advance if one is a good candidate for that, since I think that would be one factor in determining who to go see. But overall, I thought Klimas might be a good start for someone like me who's had no treatment whatsoever and no specialized testing, if I could manage the travel and the costs.

Madie, I hope you don't mind my hitching along on your thread. I planned to start one on this soon but it seems silly to have two asking just about the same question.

Hi I am fairly new to site. I have had CMV ,EBV. Possible Pots for 20 years. Went to see CFIDS Physician Dr. Cheney, in Asheville NC in the last year. Was Diagnosed with Severe Diastolic Dysfunction. Have already had Heart Cath and every other test done but Echo before I went to see him. Has anyone else been to Dr. Cheney in the last year? Since he is using his Echo machine?I live in the SE.

 

[SanDiego#1]

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. ) .

My Physician told me to always get Brand name as it had been tested and used for 10 years before Generic can come out. He said they have 30% margin of error or to change some of the ingreadiants and some come from out of the country. I ALWAYS try to get Brand. I don't need to be any SICKER.I have definitely had reactions to alot of Generic drugs.