Finding an ME specialist prepared to guide my GP?

[Gay Clarke]

I am in hospital after a BP scare, 220. I have realised that they are about 20 years behind the times and I have no access to anyone who has a clue.

I think my GP may come on-board. She speaks good English but I think would feel more comfortable with some guidance before she prescribes something she is unfamiliar with. Professor Findley did telephone consults for me but that was nearly 20 years ago now and he's retired.

Any suggestions?

 

[Edie]

If you can afford it, also consult with a Naturopath Doctor (physician), to see what help he can offer you. That's where I got most of my help.

 

[Who Me?]

Where are you?

 

[Gay Clarke]

Canary Islands. Not really ready for Naturopath yet. I have to get my GP on-board with traditional doctor. Have a few things I want to try first.

 

[Who Me?]

I don't know if a doc will consult without seeing you first. That's my experience, although some may Skype.

.There isn't much in the UK. dr De Merlier in Belgium.

If you go to the home page here and in the search bar type in Hips roadmap that is a great guideline for testing and treatment

Look up various docs protocols. Dr lerners is online, so is dr Teitlebaum's. There is info about Dr Chia here

A lot depends on whether yours is viral or not since different docs do different things.

 

[Gay Clarke]

Thanks for that- All I really need is someone that will advise my GP why, for example, Veramapil might be better to try than something else.

I have in mind that and Nimodipine worth a try and a couple of other things later. It's a lot for her to take on board without any experience of ME.

 

[Who Me?]

@Remy night be able to hear you in the right info. She is the goddess of research.

I know elsewhere she talks about verapamil. Did you look for her post? I think she said it's a mast cell stabilizer among other things.

I think a lot of stuff is just trial and error by patients.

I would say the majority of people here dont have an ME Doctor. I see an NP but a lot of what we do is stuff I find and tell her about.

She gets it about viruses, infections, mitochondria but she wouldn't know about verapamil.

Now that I think I think @Upgrayedd has tried both. Or is looking into it.

Here's remy thread
http://www.healthrising.org/forums/threads/success-with-verapamil-at-least-once.4000/#post-21823

 

[Cort]

We have ME/CFS and FM Doctor Data Bases here -http://www.healthrising.org/forums/resources/large-databases-for-finding-me-cfs-and-fm-doctors.120/

 

[Who Me?]

@Cort. Some of the links are bad. The first one is bad. The 3rd or 4th is bad. I didn't check the rest