Seeking advice for CFS diagnosis today

[Davsey27]

Hello everyone,

I am a 33 year old male in atlanta united states I have an appoimtment with primary care
today for 30 min evaluation.

Asked for cfs diagnosis for social security I have had many visits with this agency Over the last 8 months many of which were walk-ins where i complained Of Fatigue. I have been told that since my blood Count, thyroid Panel, hs-crp, sed rate, homocysteine have come back normal I am healthy though i experience PEM like many on here and flu-like symptoms,muscle aches, brain fog

During last visit and was told usually the pcp don’t make tnat diagnosis in a 15 Minute visit and typically do a refferal To see a rheumatoidologiat Was told a 30 min visit could be done

Anyone have any advice on how to convince pcp that i have CFS I have already been billed for the first visit Since my obamacare insurance requires a 500 deductible in the beggining of the Year and i have very little in savings. And don’t want to keep having to give away savings.

Is this worth the time?

The only labs i have that would indicators Of fatigue is past high ebv viral load,current titers latent, herpes simplex 1 and herpes zoster.Low testosterone reading at 303.

I have not had any herpes outbreaks besides the flu like feelings one gets In a cfs state.Labs sometimes show Slightly elevated wbc and slightly elevated lympocythes but nothing that
has warranted immediate attention.

Thank you guys and gals

 

[Learner1]

Next time you write, can you please not have extra spaces between lines and break your text into paragraphs so it's more readable?

This is a link to the diagnostic criteria another member recently shared. Any doctor can make it, even a PCP.

Here's a list of links to sites for everything from symptoms, signs, diagnosis, treatment protocols and options, that's been compiled and provided for community use through the efforts and generosity of @PatJ:

IOM ME/CFS/SEID diagnosis flowchart

Canadian Consensus Criteria - List of common ME symptoms agreed upon by ME specialists

International Consensus Criteria - Another list of common ME symptoms agreed upon by ME specialists

 

[YippeeKi YOW !!]

Hi, @Davsey27, and welcome to PR , where you'll find a large community of well-informed and generous members who will be supportive and willing to reach out to you and anser any questions you may have. There are also literally thousands of threads devoted to almost every aspect of this illness, and every substance, prescription med, and treatment protocol you could possibly think of, and all the ones you didn't.

To help get you started, here's a list of links to multiple resources, options, and help regarding everything from treatment protocols to diagnosis and testing and convincing your Dr that you do, indeed, have ME/CFS, provided to our community thru the time, effort, and generosity of @PatJ


IOM ME/CFS/SEID diagnosis flowchart

Canadian Consensus Criteria - List of common ME symptoms agreed upon by ME specialists

International Consensus Criteria - Another list of common ME symptoms agreed upon by ME specialists

Hip's Roadmap for Testing and Treatment - Hip is a member of Phoenix Rising who has compiled a detailed document that looks at ruling out other conditions, and covers potential treatments.

Erica Verrillo's CFS Treatment Guide 2e - An excellent in-depth guide.

Dr. Katrina Berne's CFS and Fibromyalgia Symptom List - Useful for finding symptoms you didn't realize may be related to ME/CFS.

ME/CFS: A Primer for Clinical Practitioners - 2014 Edition

Hope the above proves helpful, and looking forward to bumping into you in the many threads here. And for those days when your too brain fogged and PEMed and POTSed to do any heavy lifting, here are a few of the community threads that many of us use for relaxation and human contact. THe Post Your Daily Moan Here thread is a frequent destination for a lot of us, tired of wearing out friends and caregivers with the same old shite

LINK TO POST YOUR DAILY MOAN HERE: https://forums.phoenixrising.me/ind...ur-daily-moan-here.55907/page-86#post-1024176

LINK TO PATJ’s QUOTE OF THE DAY: https://forums.phoenixrising.me/index.php?threads/quote-of-the-day.548/page-96#post-1025008

LINK TO WHAT ARE YOU GRATEFUL FOR TODAY: https://forums.phoenixrising.me/ind...grateful-for-today.56762/page-47#post-1024989

LINK TO I CAN WRITE THINGS AND YOU CAN TOO
https://forums.phoenixrising.me/ind...gs-and-you-can-too.62189/page-17#post-1027238
This has become a sort of clubhouse for a lot of us, a fun and interesting place to just hang out and kick back, or write about anything that crosses our mind, from the frivolous to the serious to the wacky and strange, at the generous invitation of @Howard ....

 

[Davsey27]

Thank You Yippie and learner

The doctor said he would need to run
Acetocholyine and CK for immflamation
I am 5ft 9 172 about 16-17 percent
bodyfat yet i am malaised after a couple
hours of hitting golf balls and practicing
Chipping and putting
Where before i had no problem walking
18 holes.Is this CFS caused by MItochondrial problems or Viral?

I am currently latent in EBV though
Past high viral load
Positive for HSV1 no blisters
Herpes Zoster varicella-told this was
From chickenpox in childhood
No shingles rashes for varcella
I asked if these herpes family connection is causing the cfs and
was told no.If my WBC is normal does this mean tnat it is the mitochondria that is causing this?

Thank You guys and gals

I appreciate it

 

[BeADocToGoTo1]

Hi Davsey27,

Low testosterone is a symptom I struggled with too, way too young. In my case it was essentially due to nutrient deficiencies., which is something I can recommend looking into. Excess sugar and its health effects is another cause for all of those symptoms. Microbiome dysbiosis will also cause those symptoms, which is often caused by poor diet, excess sugar. chlorinated water, non-organic food to name a few. Try to stop as many insults to your body you have control over, fix any nutrient deficiencies, rebalance any microbiome dysbiosis and please consider the tests below.

1. Genova Diagnostics - FMV (great indicator of nutrient deficiencies, microbiome dysbiosis, etc.)
2. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology, Fecal Fat Distribution, Elastase and Chymotrypsin
3. 24 hour fecal fat test (indicator of pancreatic enzymes and malabsorption)
4. SIBO breath test (SIBO can cause malabsorption, mind fog and many other symptoms)
5. HbA1c (6 week blood sugar average indicator of (pre-) diabetes and food intake quality
6. Vitamin D

One thing I have learnt is that many doctors do not like to be told nor want to hear about ME/CFS especially off the bat. It might be better to write down all the symptoms and discuss those initially to get tests done.

 

[taniaaust1]

Hi, you should not need any test results at all for a ME/CFS diagnoses as there are no tests which are part of the actual diagnostic criteria. Getting a diagnoses of ME/CFS should depend on if you meet the criteria for whichever one your country uses or not. Sending you elsewhere for a diagnoses is a bit of a cop out as any doctor could do it as long as other diagnoses have been properly ruled out