Finally, success with a local doctor!

[SOC]

SOC a lot of the patients that have had this as long as have had it -over 20 yr. go into OI and then more Neuro and then DD.I also think we can't recover as quick. I was a long distance runner than walker for years after I got this. Had to change my distance. However 2 years of serious stress-put me down about 2 years ago.
It doesn't mean everyone will do that. I love my Dr. -However he is 4 hours away. Wish I had one closer as a backup.

San Diego

What's DD?

Sounds like your Dr is great. My closest ME/CFS Dr was 6 hrs away. Now I'm a plan flight away. Still, it's worth it to have a good specialist.

 

[Creekee]

@San Diego,

Sorry! Protomyxzoa rheumatica. Dr. Stephen Fry's cootie discovery.

Creekee

 

[SanDiego#1]

What's DD?

Sounds like your Dr is great. My closest ME/CFS Dr was 6 hrs away. Now I'm a plan flight away. Still, it's worth it to have a good specialist.

Soc- Diostolic Dysfunction of the Heart. Means I am not getting enough Blood Volume through my heart or body.The Diostolic part of my heart is not able to push the blood back out properly
My Physician specializes in it. A lot of ME/CFIDS patients have it and it does not go away. You have to build up your Immune system so you can handle it. I am doing better. He has told me things to do and to take they are all natural. Rarely rec meds. Also none of the other Cardiologists caught it. Even when I had a Heart Cath done..

I agree about the distance to see a good CFID Dr.

@San Diego,

Sorry! Protomyxzoa rheumatica. Dr. Stephen Fry's cootie discovery.

Creekee

I can drive or have someone else drive me. He is in the next state.

San Diego

 

[SanDiego#1]

Soc- Diostolic Dysfunction of the Heart. Means I am not getting enough Blood Volume through my heart or body.The Diostolic part of my heart is not able to push the blood back out properly
My Physician specializes in it. A lot of ME/CFIDS patients have it and it does not go away. You have to build up your Immune system so you can handle it. I am doing better. He has told me things to do and to take they are all natural. Rarely rec meds. Also none of the other Cardiologists caught it. Even when I had a Heart Cath done..

I agree about the distance to see a good CFID Dr.


I can drive or have someone else drive me. He is in the next state.

San Diego

Creekee- Is it a Parasite?

San Diego

 

[Tristen]

Tristen- It is by no means causing all my symptoms. I have CMV, EBV, ME, POTS, DD. The only reason this came up as I was thirsty all the time and was drinking gallons of water and urinating all through the night. I looked it up on internet.
If not treated it can be fatal as you stay dehydrated. My Physician is saying only Desmopressin will treat it. Took 1/2 the dosage I was supposed to take and did not sleep for 18 hours. Was really wired.We have a phone conference for Friday. You should be tested for it. I had to take a 16 hr. Water deprivation test. Even if you were tested before, if it was awhile ago, you need to be retested. A lot of people who think they have POTS actually have DI. The earlier it is tested the easier to treat.Will let you know what we decide. Thanks for your interest.

I learn so much from this site.

Stay well,

San Diego

No, DI could not be responsible for the entire array of me/cfs symptoms, but hopefully treating the condition will give you some relief. I appreciate you keeping us posted on how well this is working for you. Also, thanks for the suggestion to be tested (or maybe re-tested, can't remember what we did back then).....I'll ask my doc.

Some years ago, Dr Paul Cheney did a write up on his experience with me/cfs being a disease that evolves in phases. It matched my experience of going from immune to neuro. I believe that info was posted on the Dallas Fort Worth site. I'll look around for it.

Best

T

 

[Tristen]

Tristen,

You've described my "evolution" exactly. Have seen a big shift in symptoms the last could of years. Sore throat and swollen glands have nearly gone after 33 years; special new neuro stuff now dominates the scene. I've noticed a lot of my new icky symptoms correspond to protomyxzoa rheumatica, specially Ann Corson's list. I'm positive for the PR; have you been tested for it?

Best,
Creekee

Over the years I have heard this same experience reported by many with me/cfs. I think it is quite common for those of us who go on for many years. When my condition switched over to all neuro, the immune symptoms stopped. Lab tests still show a perturbed immune system, but without those symptoms.

PR = protomyxzoa rheumatica? No I don't recall ever being tested for that. I'll have to research it.

Thanks

T

 

[SanDiego#1]

No, DI could not be responsible for the entire array of me/cfs symptoms, but hopefully treating the condition will give you some relief. I appreciate you keeping us posted on how well this is working for you. Also, thanks for the suggestion to be tested (or maybe re-tested, can't remember what we did back then).....I'll ask my doc.

Some years ago, Dr Paul Cheney did a write up on his experience with me/cfs being a disease that evolves in phases. It matched my experience of going from immune to neuro. I believe that info was posted on the Dallas Fort Worth site. I'll look around for it.

Best

T

Tristen- Dr. Cheney is my Physician. Hope to scope out what is going on with PC with him tomorrow. If you want to contact me by Conversations after that I will go over what we decided.. Had great day yesterday. Today severe OI symptoms.This Disease (Or what ever it is is Bizarre).

Thank you for your interest. If you see article he wrote let me know.

San Diego

 

[Creekee]

Would love to see Dr. Cheney's info on the phases of the disease. Next month will be 33 years for me, so my biggest shift in symptoms started around the 31 year mark. Gotta say, it's really weird to wake up without a sore throat and golf ball glands after all these years. Am also a real hardbody after sudden 45lb weight drop (who IS this woman??).

Here is some info on protomyxzoa rheumatica:

Interview with Dr. Stephen Fry (discovered this protozoa):
http://protomyxzoa.org/images/Protomyxzoa_interview.pdf


A presentation by Dr. Ann Corson who has been treating patients with the protozoa:
http://protomyxzoa.org/images/Protomyxzoa_rheumatica.pdf

Best,
Creekee

 

[Tristen]

http://www.dfwcfids.org/medical/phases.html

here's one of them.....not sure this is the one I had referred to. It was so many years ago.

Thanks for the links Creekee

 

[SanDiego#1]

Would love to see Dr. Cheney's info on the phases of the disease. Next month will be 33 years for me, so my biggest shift in symptoms started around the 31 year mark. Gotta say, it's really weird to wake up without a sore throat and golf ball glands after all these years. Am also a real hardbody after sudden 45lb weight drop (who IS this woman??).

Here is some info on protomyxzoa rheumatica:

Interview with Dr. Stephen Fry (discovered this protozoa):
http://protomyxzoa.org/images/Protomyxzoa_interview.pdf


A presentation by Dr. Ann Corson who has been treating patients with the protozoa:
http://protomyxzoa.org/images/Protomyxzoa_rheumatica.pdf

Best,
Creekee

Creekee- Alot of his info is on the Cheney Clinic website. The patients who have had it the longest. Usually go into
Low blood Volume mode and DD-which is what I have.I now have been diagnosed with Diabetes Insipidus. Had severe problem with Desmopressin-which was drug of choice. Could not take even in small dose. Don't know what is next .The problem with DI is dehydration.

San Diego
San Diego .