Re: New here and to CFS treatments...where do I start for treatment? Please advise!

[Guest guest]

care2direct wrote:

> So, Until I find a specialist I am looking for some natural or nutritional

supplements to try and feel a little better. Also, my Primary Dr. is very

willing to run any test on me and try any med that would be appropriate but he

just doesn't know where to start. Does anyone know a source for this info? I

would love to have a majority of the blood work done when I go to the specialist

to get the treatment going.

I would suggest looking into the Pall protocol. You can read more on

his website and join our group. URLs in the sig below. It has helped

many people. Dr. Pall cured himself of CFS.

Jeri <teewinot13@...>

@>--->---->-------------------<----<---<@

Dr. Pall's NO/ONOO- Theory/Treatment Discussion Group:

TenthParadigmSociety

@>----------<---------->-----------------------<----------<----------<@

The Tenth Paradigm - Dr. Pall's Website for CFS/MCS/FM/ETC.:

http://www.thetenthparadigm.org

@>----------<---------->-----------------------<----------<----------<@

MCS-Florida - For All Chemically Sensitive Floridians

MCS-Florida

[Guest guest]

" care2direct " <care2direct@...> wrote:

>

> I have had 13 surgeries over the last 3 1/2 years on my

> gastrointestional system and splacnick nerves. I have

> chronic pain under my right shoulderblade that is worse

> than when my appendix ruptured. I am on lots of meds...

> Cymbalta, Lyrica, Fentanyl pain patch, Nucynta, Synthroid,

> Cytomel, Benicar, and lots of other meds as needed.

It's amazing anyone can live with such a load of medications.

Thyroid meds are common, sometimes over or underdosed. If

thyroid meds are needed, they are commonly under-monitored and

not optimized.

Cymbalta can foster hyperthyroid. So in combination with

thyroid meds, thyroid could be hard to manage.

But Cymbalta, Lyrica, Benicar, etc etc can have systemic

side effects. They become the cause of new problems, and

are obstacles to cure. And due to nervous system damage created,

the meds can be hard to withdraw from. (see also my

Links > Withdrawal folder for more info, at url below/end)

Carol W.

willis_protocols

[Guest guest]

Where do you live?? Check to see if there is an Fibro and Fatigue Center within

driving distance. If no FFC, then buy Dr. Teitlebaums' book From Fatigued to

Fantastic----------there are tests and such in back of book your GP can run for

you------and the protocal also. The FFC and Dr. Teitlebaum will help with the

basics----get you started on the healing path. Give the program at least a

year. Keep reading these posts----some will come in handy later.

Feel free to contact me privately----I have " been there " and am 90% functional.

God Bless,

Sara

>

> hello, I am new here and have ony been diagnosed for several months now, but

have had the symptoms for a year or more. I have had 13 surgeries over the last

3 1/2 years on my gastrointestional system and splacnick nerves. I have chronic

pain under my right shoulderblade that is worse than when my appendix ruptured.

I am on lots of meds...Cymbalta, Lyrica, Fentanyl pain patch, Nucynta,

Synthroid, Cytomel, Benicar, and lots of other meds as needed.

>

> I have developed the CFS over the last year. The meds always made me a little

tired but this level of exhaustion is undescribeable. I cannot get a good nights

sleep because of insomnia and because I wake up like 5 -10 times a night. But I

sleep at least 14 hours a day on and off an sometimes I even sleep for 20 some

hours and then sleep that whole next day. It's crazy, I never used to sleep past

8 am on the weekends.

>

> So, Until I find a specialist I am looking for some natural or nutritional

supplements to try and feel a little better. Also, my Primary Dr. is very

willing to run any test on me and try any med that would be appropriate but he

just doesn't know where to start. Does anyone know a source for this info? I

would love to have a majority of the blood work done when I go to the specialist

to get the treatment going.

>

> Also, our vacation is in about 3 weeks and I am desperate to have at least a

little energy. My husband deserves a good vacation because all he does is work

to pay my medical bills and take care of me. If anyone has any advice please

share with me.

>

> I am looking into getting some D=Ribose...Can anyone reccomend a good reliable

brand or company? Thank you all so much for your time!

>

[Guest guest]

Have you tried Emergen-C for energy? It works pretty well. I recently re-read

stuff about DMSO for pain. You would just have it rubbed into your shoulder.

The sleep thing is horrible. sounds like me. Hard to have energy when you

don't sleep.

Take care,

Cheryl in Oregon

>

> hello, I am new here and have ony been diagnosed for several months now, but

have had the symptoms for a year or more. I have had 13 surgeries over the last

3 1/2 years on my gastrointestional system and splacnick nerves. I have chronic

pain under my right shoulderblade that is worse than when my appendix ruptured.

I am on lots of meds...Cymbalta, Lyrica, Fentanyl pain patch, Nucynta,

Synthroid, Cytomel, Benicar, and lots of other meds as needed.

>

> I have developed the CFS over the last year. The meds always made me a little

tired but this level of exhaustion is undescribeable. I cannot get a good nights

sleep because of insomnia and because I wake up like 5 -10 times a night. But I

sleep at least 14 hours a day on and off an sometimes I even sleep for 20 some

hours and then sleep that whole next day. It's crazy, I never used to sleep past

8 am on the weekends.

>

> So, Until I find a specialist I am looking for some natural or nutritional

supplements to try and feel a little better. Also, my Primary Dr. is very

willing to run any test on me and try any med that would be appropriate but he

just doesn't know where to start. Does anyone know a source for this info? I

would love to have a majority of the blood work done when I go to the specialist

to get the treatment going.

>

> Also, our vacation is in about 3 weeks and I am desperate to have at least a

little energy. My husband deserves a good vacation because all he does is work

to pay my medical bills and take care of me. If anyone has any advice please

share with me.

>

> I am looking into getting some D=Ribose...Can anyone reccomend a good reliable

brand or company? Thank you all so much for your time!

>

[Guest guest]

From what I've learned, all the D-Ribose made in the USA comes from a company

named Bioenergy. I used to get it from Nultrabulk because they sold it in 1

kilo (and larger) sizes and used the Bioenergy d-ribose. But at one point they

switched to a Korean supplier because the price kept going up...I didn't know

anything about the Korean version so I looked around and found the best price at

Swanson (www.swansonvitamins.com) Health Products. I've been paying $27.99 for

a 300 gram container and if you get on their email list you'll find they

frequently give out free shipping with some minimum purchase ($45 last time I

used it). I've checked with them and confirmed they use the Bioenergy version.

It takes about 10 days to feel results, using 15 grams a day.

New here and to CFS treatments...where do I start

for treatment? Please advise!

hello, I am new here and have ony been diagnosed for several months now, but

have had the symptoms for a year or more. I have had 13 surgeries over the last

3 1/2 years on my gastrointestional system and splacnick nerves. I have chronic

pain under my right shoulderblade that is worse than when my appendix ruptured.

I am on lots of meds...Cymbalta, Lyrica, Fentanyl pain patch, Nucynta,

Synthroid, Cytomel, Benicar, and lots of other meds as needed.

I have developed the CFS over the last year. The meds always made me a little

tired but this level of exhaustion is undescribeable. I cannot get a good nights

sleep because of insomnia and because I wake up like 5 -10 times a night. But I

sleep at least 14 hours a day on and off an sometimes I even sleep for 20 some

hours and then sleep that whole next day. It's crazy, I never used to sleep past

8 am on the weekends.

So, Until I find a specialist I am looking for some natural or nutritional

supplements to try and feel a little better. Also, my Primary Dr. is very

willing to run any test on me and try any med that would be appropriate but he

just doesn't know where to start. Does anyone know a source for this info? I

would love to have a majority of the blood work done when I go to the specialist

to get the treatment going.

Also, our vacation is in about 3 weeks and I am desperate to have at least a

little energy. My husband deserves a good vacation because all he does is work

to pay my medical bills and take care of me. If anyone has any advice please

share with me.

I am looking into getting some D=Ribose...Can anyone reccomend a good reliable

brand or company? Thank you all so much for your time!

[Guest guest]

First of all, where do you live? Not to be discouraging, I have had CFS for

20yrs (as have many others). The biggest thing I have learned is there is no

" ONE " answer or cure. Everyone has different issues. I have wasted so much money

& time with promises that I would get better. So far the most promising answer

for me has been finding a doctor that specializes in CFS. I moved to Florida

pretty recently, and after researching & if I'm right, this group, I went to see

Klimas in Miami. They know exactly what to test for and I finally don't have to

educate another doctor. I'm hopeful or at a minimum believe I'm on track. Best

wishes.

Joy

>

> hello, I am new here and have ony been diagnosed for several months now, but

have had the symptoms for a year or more. I have had 13 surgeries over the last

3 1/2 years on my gastrointestional system and splacnick nerves. I have chronic

pain under my right shoulderblade that is worse than when my appendix ruptured.

I am on lots of meds...Cymbalta, Lyrica, Fentanyl pain patch, Nucynta,

Synthroid, Cytomel, Benicar, and lots of other meds as needed.

>

> I have developed the CFS over the last year. The meds always made me a little

tired but this level of exhaustion is undescribeable. I cannot get a good nights

sleep because of insomnia and because I wake up like 5 -10 times a night. But I

sleep at least 14 hours a day on and off an sometimes I even sleep for 20 some

hours and then sleep that whole next day. It's crazy, I never used to sleep past

8 am on the weekends.

>

> So, Until I find a specialist I am looking for some natural or nutritional

supplements to try and feel a little better. Also, my Primary Dr. is very

willing to run any test on me and try any med that would be appropriate but he

just doesn't know where to start. Does anyone know a source for this info? I

would love to have a majority of the blood work done when I go to the specialist

to get the treatment going.

>

> Also, our vacation is in about 3 weeks and I am desperate to have at least a

little energy. My husband deserves a good vacation because all he does is work

to pay my medical bills and take care of me. If anyone has any advice please

share with me.

>

> I am looking into getting some D=Ribose...Can anyone reccomend a good reliable

brand or company? Thank you all so much for your time!

>

[Guest guest]

Hi, care2direct.

Gastrointestinal surgery can cause a person not to be able to absorb vitamin

B12. If this is the case, a Ba12 deficiency can occur, and it may show up a

year or more after the surgery.

According to my hypothesis for ME/CFS, most cases involve a functional

deficiency in B12, usually brought on by glutathione depletion. But an absolute

deficiency in B12 could do the same thing: partially shut down the methylation

cycle.

I would suggest that you get a standard blood serum B12 measurement from your

doctor. If it comes out low, you can take B12 sublingually (under the tongue)

or you can get shots from your doctor.

If the blood serum B12 does not come out low, then it could still be a

functional, rather than an absolute, B12 deficiency. To look for this, you

could get a urine methylmalonate test from your doctor. If it comes out high,

that suggests a functional B12 deficiency. If you have that, then I would

suggest joining the cfs_yasko group and finding out about methylation

treatment. This is helping at least two-thirds of people who have ME/CFS and

stick with it.

Best regards,

Rich

>

> hello, I am new here and have ony been diagnosed for several months now, but

have had the symptoms for a year or more. I have had 13 surgeries over the last

3 1/2 years on my gastrointestional system and splacnick nerves. I have chronic

pain under my right shoulderblade that is worse than when my appendix ruptured.

I am on lots of meds...Cymbalta, Lyrica, Fentanyl pain patch, Nucynta,

Synthroid, Cytomel, Benicar, and lots of other meds as needed.

>

> I have developed the CFS over the last year. The meds always made me a little

tired but this level of exhaustion is undescribeable. I cannot get a good nights

sleep because of insomnia and because I wake up like 5 -10 times a night. But I

sleep at least 14 hours a day on and off an sometimes I even sleep for 20 some

hours and then sleep that whole next day. It's crazy, I never used to sleep past

8 am on the weekends.

>

> So, Until I find a specialist I am looking for some natural or nutritional

supplements to try and feel a little better. Also, my Primary Dr. is very

willing to run any test on me and try any med that would be appropriate but he

just doesn't know where to start. Does anyone know a source for this info? I

would love to have a majority of the blood work done when I go to the specialist

to get the treatment going.

>

> Also, our vacation is in about 3 weeks and I am desperate to have at least a

little energy. My husband deserves a good vacation because all he does is work

to pay my medical bills and take care of me. If anyone has any advice please

share with me.

>

> I am looking into getting some D=Ribose...Can anyone reccomend a good reliable

brand or company? Thank you all so much for your time!

>

[Guest guest]

A very good and understanding Chronic Fatigue/Fibromyalgia doctor in

Florida is Dr. Dantini (google him). He also has a book out now

also. I discovered him in 2003 and he did phone consultations and we

worked together with my regular physician (a jewel). He tested me for

viruses and food allergies (of which I had several). I found great

relief with his treatment for the viruses (Valtrex) and food allergy

rotation diet. I was ready to go on disability, I was so miserable. He

gave me my life back.

in La Selva Beach CA

On 4/16/2011 12:58 PM, Joy wrote:

>

> First of all, where do you live? Not to be discouraging, I have had

> CFS for 20yrs (as have many others). The biggest thing I have learned

> is there is no " ONE " answer or cure. Everyone has different issues. I

> have wasted so much money & time with promises that I would get

> better. So far the most promising answer for me has been finding a

> doctor that specializes in CFS. I moved to Florida pretty recently,

> and after researching & if I'm right, this group, I went to see Klimas

> in Miami. They know exactly what to test for and I finally don't have

> to educate another doctor. I'm hopeful or at a minimum believe I'm on

> track. Best wishes.

>

> Joy

>