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Old 04-03-2007, 09:08 AM   #1
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MOMOFBOYZ HB User
Cfs Specialist

Hi all! Well I took hubby to the visit. It was good cause dr described what he thinks cfs is. Which to summarize it a virus that cause cell disruption???? Anyway here his his protocol:

NADH 4 tabs no food
Cq10 with food 2 x day
prcyengenol 2 x day
biaxin 1 1/2 2 x day
valtrex 1 2 x day
plus my other stuff like toprol for mitral valve prolapse and Ultracet for pain which doesn't work.
ALso no heavy stuff ever. I have to completely lay down every afternoon for 1 hour. Nothing heavy like laundry after 5pm. Which having 2 little boys is a hard one. No stretches or any form of excercise. I have to do this exactly for one month then see him. Then another NADH at 11:00.

I guess thats it. Hubby has been even more understanding though. So I am glad he came.

I hope you all are having a good day!!!
God bless, Deena

 
Old 04-12-2007, 02:31 PM   #2
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charmac HB User
Re: Cfs Specialist

Hi! Thanks so much for this. You and your Doc have given me a little hope. Could you please give us the dosage of each of these things he prescribed for you? Also let us /me know what happens after a month of the regimen? I could then take it to my Doc and see if he'd prescribe the meds that need an rx. He's the first in my experience to actually acknowledge that CFS exists! Thanks again! My best to you. Char

 
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Old 04-13-2007, 08:01 AM   #3
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Re: Cfs Specialist

Since it seems like there are a lot of docs who won't even acknowledge CFS as being a "real" diagnosis, how did yours describe to DH what he thinks it is? Also, I'm curious why he feels that this meds regimine will help. (I'm not at all suggesting that it won't, I'm just trying to be more equipped with info on my journey of docs who already look at me like I'm off my rocker when I explain my bizarre symptoms that are all defined by CFS.)

 
Old 04-13-2007, 02:02 PM   #4
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Re: Cfs Specialist

Hi friends! First off I am very sceptical if I will see any results. I am not pessemistic but want to be realistic. I have been sick for 1 1/2 yrs. He explained the cell problem like a car that has no one pushing the gas pedal. If the mycochondria in my cells are not replacing or destroying themselves my body cannot heal. He took a long time explaining this. But it's hard to explaine.

He wants to see me in one month to check in but he said some people feel better in three weeks some a year. IF you follow it exactly.

cq10 100 mg tabs one in morning one in evening. For cellular energy.
Pycnogenol 30 mg tabs 1 in morn 1 in evening. For more energy
NADH5mg tabs 4 first thing on empty stomach 2 at 11:00
Valtrex 500mg tabs 1 1/2 every six hours. I am thinking for herpes 6 which I don't think I have. Just trying to fight the virus.
Biaxin 500 mg tabs 1 in morning 1 in evening. Anitbiotic for the virus
ultrcet tabs 325mgs. i tab 3 times a day. For pain but doesn't really touch my pain.
Lunesta to sleep.

I know it is a lot but if I don't give this guy a legitimate try I will never know. I haven't been stuck in bed all since I began. But no real shout out results. I can say since I am told to lay down every day for an hour I do so without the guilt. And no laundry or heavy things after 5. He means even cooking. But since I have a 7 and 5 yr ol this is hard.

I hope that maybe you can give this a try or find a doc who knows of something to try!!! I was just waisting away before. The herbal meds cq10, pycnogenol and NADH he told me to get online from ( REMOVED ). They do not cut their products like many companies do. But this alone for 4 weeks was almost 100.00.

Let me know what you think, God bless, Deena

Last edited by moderator2; 04-13-2007 at 02:43 PM. Reason: posted commercial website

 
Old 04-14-2007, 07:25 AM   #5
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Re: Cfs Specialist

Do the meds make you feel loopy and drugged up, or are they helping any? I know with CFS, everything takes more time,so you may not be seeing results yet, but do you feel drugged or do you feel okay so far? I hate taking meds (as I'm sure most people do) but hate not being able to function in my daily life a lot more. Please keep us posted on your progress!

 
Old 04-14-2007, 08:18 PM   #6
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MOMOFBOYZ HB User
Re: Cfs Specialist

surprisingly I do not feel doped up. One and a half yrs ago when I started Ultram I did feel it. But now not at all. I always feeel like I am foggy brained but no more than usual. I can't say I feel anything yet but have not been bedridden yet either. Unfortunately Lunesta is started to not work on me. This doctor told me to expect this. I told him I used to take Ambien and it quit working and he says that is normal for us. I haven't really slept in 2 nights yet.

I do feel like a major pill popper though. Just giving it a try though.

Good luck, Deena

 
Old 04-15-2007, 10:32 AM   #7
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Re: Cfs Specialist

To momofboys,

Did the dr. do bloodwork to determine the need to take these medicines, or whatever they are? I'm just wondering about what to tell my dr. I would love to find something to get strength back. Are these meds giving you something which your system isn't producing enough of? Are you feeling better since you've started taking them?

Also, if anyone reads this post, can B complex vitamins be a good source of extra energy? I take multi-vitamins and calcium supplements, but I think I've read on the messageboard that B+ is a boost for CFS.

Trish

 
Old 04-16-2007, 11:08 AM   #8
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Re: Cfs Specialist

I definately think that vitamins and minerals help with fatigue, I would definately reccomend the marchall protocal, the only problem with it is that you have to take Benicar, a blood pressure med. And to finda doc. that will prescribe Benicar to someone that does not have HBP isn't that easy, unless you have a very good relationship with your doctor and he or she is willing to participate in this protocal. The Benicar is not harmful to people who have low blood pressure, it is actually beneficial, even though that doesn't seem possible. I have heard many great things about this protocal, but if you are unable to do this because of the prescription drug that is required. There are other great alternative and natural things that can be used to help with fatigue. Rife machines have also gained alot of attention the past couple of years for their great healing effects. Wobenzym N is a great systemic enzyme that elliminates bacteria and toxins in the bloodstream, magnesium is a vitamin that definately should be used and so is vitamin C, not just regular vit. C but ester C with bioflavenoids. Everyone is different and different things will work for different people. Also alot of times when starting a new protocal you will initially feel worse, such as your fatigue is worse or if you feel that your existing symptoms are flaring up, this is most likely a good sign, that means that the protocal is working and attacking whatever is disrupting you system. So many times people stop taking it because they think it is bad for them, that is usually not the case, so don't give up. If you all of a sudden get symptoms that you have never had, then contact your doctor. I am not a doctor though and all of these things should be discussed with your doctor and monitored by him or her. Hope this could be of some help.

 
Old 04-16-2007, 08:30 PM   #9
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Re: Cfs Specialist

To Sarah, I wonder if this is why I suddenly can not sleep. It has been 4 nights with only a couple hours a night. Also my underarm lymph node is very tender and at times painful. However I do not feel it with my hands. I have had tender lymph nodes before when this all started. Even had to have neck node removed b/c so swollen and the fact that I have night sweats. This is freaking me out. I cannot go thru the lymphoma scare again.

Tell me what you think.

Trish. This doc did do bloodwork. And he explained everything in detail. But trying to recall it is another matter. I know the NADH is for cell mycochondria????? And cq10 for energy and phynegonal more cell stuff. But he didn't thoroughly go over bloodwork. Next visit I will get a copy. I usually do but forgot!!!!! The valtrex for herpes 6 (don't think I even actually have it) And antibiotic to fight the infection. I do have persistent low grade fevers, sever night sweats ect. I actually feel worse right now b/c lunesta quit working and I haven't slept in four days.

Pls listen. to Sarah and see what you need I don't know if there is one sure way to do this. I am giving thia guy a chance. People really do come from other states to see him. And he is so confident. We'll see.

Good luck and God bless, Deena

 
Old 04-20-2007, 08:14 PM   #10
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Re: Cfs Specialist

Quote:
Originally Posted by jmcummins3 View Post
Since it seems like there are a lot of docs who won't even acknowledge CFS as being a "real" diagnosis, how did yours describe to DH what he thinks it is? Also, I'm curious why he feels that this meds regimine will help. (I'm not at all suggesting that it won't, I'm just trying to be more equipped with info on my journey of docs who already look at me like I'm off my rocker when I explain my bizarre symptoms that are all defined by CFS.)

Many doctors I have dealt with choose not to list cfs as an illness, as their method of medicine is based on every illness having a physical cause, ie being shown in a blood test etc (not the case with cfs). I have been to many doctors that looked down on me when I have told them I suffer from cfs, I have been sent for numerous blood, urine tests, (one even gave me an AIDS test at the age of 18 ), as they insisted cfs does not exist and it must be something else. My ob has been great with it though during my pregnancy and other than him, I have found naturopaths and alternative medical professionals do recognize it as an illness and have some great options for helping with treatment.

 
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