Help Please- Educating a New Doctor, Overwhelmed

TheMoonIsBlue

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Hello

I know this is much to ask of all you kind people.........but, I am thinking of going to a new doctor in hopes of "starting from scratch" and basically having ALL the testing I can possibly have done. I want to:
1. Rule out any other problems that may have developed over the course of my ME/CFS
2. See if there are any other treatment problems

But mostly, I need to EDUCATE a new doctor, who is willing to listen and be interested, in ME/CFS.
 

Andrew

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One thing I do is make a list over the days before the visit of questions and comments. Also, see if any of this helps: http://www.forums.aboutmecfs.org/entry.php?398-educating-your-doctor-(and-you)

BTW, the last time I started with a new physician I simply asked him what he thought about Chronic Fatigue Syndrome. The thing is, if the physician doesn't want to understand it there's really no point. His or her heart won't be in it. Many physicians don't like dealing with chronic illness, especially one that takes up more time than an average patient.
 

CBS

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GFS Knowledge Center - Klimas - How to get the most from your PCP

TMIB,

I didn't see the videos provided by the CFS Knowledge center mentioned yet. Dr. Klimas and others have made a series of short videos on topics such as how to optimize a visit to your PCP:

Perhaps the single most frequent complaint of those afflicted with ME/CFS is that they are not being properly diagnosed and treated by their primary care physicians.

Dr Nancy Klimas, M.D. identifies those steps a patient can take to assure the best possible outcome from their current and potential team of physicians.

This is MUST VIEWING for all those with chronic conditions.
Here's the direct link to the video: http://cfsknowledgecenter.com/ea1.php

Here's the link to the video series: http://cfsknowledgecenter.com/expert-assistance.php

It's definitely worth a good look.

Best of luck,

Shane
 

Sasha

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Thanks for these links, Shane - I'm a huge fan of Nancy Klimas and wish I could teleport to Florida so I could be her patient! I just listened to the first video and it was interesting.
 
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Hi! That video by Dr. Klimas is SOOOO helpful!

I also recently started with a new doctor (s) and this is what I did.

1) Called around to all the primary care doctors and asked if they had experience dealing with CFS. Found a doctor who said she has patients, and though she doesn't treat directly, she gives referrals out for CFS patients.
2) Picked a specialist (Infectious Disease) off the co-cure list, and saw them for an appointment BEFORE going to my new primary care doctor. ($190 out of pocket) He gave me prescriptions, lists of tests he wanted, and days to follow up.
3) Decided I liked the specialist (versus taking a randonm referral from my PC doctor) and would want to go to him.
4) Made an appoinment with my primary care doctor.
4) Went to my primary care doctor, explained I was under treatment by specialist, gave her lists of what needed to be done, what he thought -- and she added on a few of her own. Also, she gave me the referral.
5) Now in the process of waiting for test results. I plan to go back to both doctors in a month.

So, after ten years - I actually feel that I am under a treatment team! That being said, its a TON of work - calling doctors, going to appointments - and luckily my husband has been incredibly helpful.

I also listed to Klimas and said things like, "I know this disease is a lot of work. I'm willing to make extra appointments - manage each symptom individually - blah blah blah." I was also VERY firm with both doctors, that I have CFS and that I was not DEPRESSED, and that my goal in these appointments is to get better and get my life back!" My husband says I am a little too firm, but after doctors who told me to try meditation, I feel I have to be! Luckily, alot has changed - and in truth. my doctors have been fabulously understanding. But again, I did most of the leg work for the primary care...

Oh, and I bring all my paperwork from the last 10 years in with me, too. (Just in case).

I hope this helps! GOOD LUCK! The most important thing you can do for yourself is find a great team, and doctor! And again, GOOD LUCK!!!

PS In terms of getting all new tests. I actually got from VIP, as well as an XMRV test, the Mycoplasma, Human Herpes, EBV, Lyme and all the other big offenders. You can easily print up that from their site, and have your doctor sign off on what you want. Literally, that's what I did. Also, the specialist decided on his own that he wanted me to take some more tests to (once again) rule out all the other offenders like RA, Lupus, Addison's, Thyroid Problems, sleep issues etc. So, I got that without even having to ask for it.
 

Sasha

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I've watched three of these Nancy Klimas videos now and they're all really interesting. A really good resource.
 

Sallysblooms

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Dr. Dzugan is wonderful. He has wonderful blood tests and a long questionaire and can get the hormones balanced fast. He is online and works with your doctor but you do need a good doctor that understands supplements.

Do you have a way to see an Integrative M.D? A doctor that knows how to order the correct blood tests and interpret them and keep track of levels of vitamins, etc. Is important.

Hormone balance is a great place to start. I use bioidenical gels. the right supplements, the ones you need, are important.
 

Sallysblooms

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I had lots of obgyn's try to treat hormones, even a specialist!!! Disgusting how little most know! I am blessed to have Dr. Dzugan. I hope you find some knowledgeable doctors, it is hard work to find them.

I agree, we make progress With cfs, POTS, etc and have better health when we have good doctors for sure.
 

*GG*

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