Doctor Needed in Ohio (OH) - Northeastern or Cleveland area

[Elisa]

Hi All,

Periodically, I post this in hopes that someone has found a cfs doctor in my area - northeastern Ohio - specifically westside suburbs of Cleveland, Ohio (OH).

So if anyone has a doctor...please, please post here.

I have already reviewed all of the lists and actually have a database of doctors world wide - that I am working on (for a directory) - but sadly my own hometown seems to be without a solid and knowledgeable CFS doc.

Yes, I have been to the Cleveland Clinic - and they have little to nothing to offer. I know all the doctors by name there that supposedly are CFS specialists. It is a sad showing.

I have an opportunity to get treatment from a national ME/CFS doctor but he requires I have a doctor here...so I really need your help!

God Bless,

Elisa

 

[SOC]

Sadly, many of us don't have a nearby ME/CFS doctor. There just aren't enough of them in the world.

Won't the national ME/CFS doctor work with whatever GP you have?

 

[Elisa]

Hi!

Thanks for your reply!

The conventional GPs in this area are generally w/ the Cleveland Clinic (CC) system and I need someone open to treatments not just antidepressants. I went to one doctor at the CC for YEARS hoping for help and all I did is fill out a survey on how I felt (every time I went) and he would say "I so wish there was something I could do" - but he never was up to date on any treatments - just seemed to be phoning it in at the CC. That got very old.

I have even tried an autism doctor locally - but he is really only interested in autism and just doesnt know much about CFS. He would always say two things that really bothered me - "what do you want me to do?" and "People with chronic fatigue syndrome will live a long and miserable life and there is nothing that can be done." To the first statement I would always have ideas for blood work - to rule out things (like D3 levels, lyme, CD57 etc) etc. I said to him at the beginning - "if you run out of ideas, please don't throw me aside - I will have lots of ideas on how to proceed - if we can just work together." Obviously this did not work.

I am without any basic care, really. I have made a million calls to doctors locally - but they just dont feel comfortable with the basics - like B12 shots etc.

The alternative GPs I speak with seem to not want to work with any other (ME/CFS) docs - so either way I am betwixt and between.

God Bless,

Elisa

 

[SOC]

Hi!

Thanks for your reply!

The conventional GPs in this area are generally w/ the Cleveland Clinic (CC) system and I need someone open to treatments not just antidepressants. I went to one doctor at the CC for YEARS hoping for help and all I did is fill out a survey on how I felt (every time I went) and he would say "I so wish there was something I could do" - but he never was up to date on any treatments - just seemed to be phoning it in at the CC. That got very old.

I have even tried an autism doctor locally - but he is really only interested in autism and just doesnt know much about CFS. He would always say two things that really bothered me - "what do you want me to do?" and "People with chronic fatigue syndrome will live a long and miserable life and there is nothing that can be done." To the first statement I would always have ideas for blood work - to rule out things (like D3 levels, lyme, CD57 etc) etc. I said to him at the beginning - "if you run out of ideas, please don't throw me aside - I will have lots of ideas on how to proceed - if we can just work together." Obviously this did not work.

I am without any basic care, really. I have made a million calls to doctors locally - but they just dont feel comfortable with the basics - like B12 shots etc.

The alternative GPs I speak with seem to not want to work with any other (ME/CFS) docs - so either way I am betwixt and between.

God Bless,

Elisa

I know that problem. How closely is your national ME/CFS doc willing to work with your local doc? Perhaps a local doc would be more comfortable doing tests and so on if they're requested by the specialist. That is, one that isn't comfortable working with the basics from you, might take the same information from the specialist.

It's crazy, isn't it? We can't even get a PCP to take us on, much less try to treat the illness. Maybe a naturopath might take you on, especially if you sell it as a learning opportunity (working with a national ME/CFS doc).

 

[Valentijn]

Have you considered a Naturopathic Doctor? They're a lot more open-minded, and many do both conventional and "alternative" treatments.

 

[KathySkes]

Hi, if you find someone let me know also, I am in Central Ohio but would be willing to travel (have family in the Ashtabula area).

Kathy

 

[PNR2008]

Nothing. Unless you want to do the Fibro and Fatigue Centers in Solon.

 

[Vincent]

Have you considered a Naturopathic Doctor? They're a lot more open-minded, and many do both conventional and "alternative" treatments.

I've been to two naturopathic doctors. Keep in mind you may need to go to a few before you find one that works for you. Unless you live in a state where naturopaths are licensed, it's not covered under insurance.

Naturopaths are very expensive, but I think they can be good for getting you started on a plan. As for myself I have access to the same, or more information online then they can impart during a 60 minute appointment. They also want to only sell you their vitamins, in my case Standard Process. They could never explain why their vitamins where better than anyone elses. You also can not order Standard Process vitamins online, they are under lock and key via your naturopath. That was one of the main reasons I stopped going; I'm not getting suckered into their vitamin gravy-train. I have many sources of vitamins online.

Also if you live in a state where naturopaths are not licensed they can not order tests, etc. You need a willing GP. Asking an allopathic medicine dr to take direction from a patient is exactly opposite how they are trained. You'll find that 90per wont do it.

The entire system is against them, anyway. They put themselves at risk legally and financially. Medicine is america is paint-by-numbers. Patients has X symptom that is assigned to X ICD-10 code. Said code has X tests and treatments available for reimbursement. If Y tests are performed that is against the 'standard of care' and the doctor could potentially face financial (claim disapproval) or liability in any kind of lawsuit.

If dr is faced with any kind of discplinary action their license is at risk. If the dr were to lose their license they have now lost their livelihood, but the 250,000 student loan (that's the minimum) is still there staring them in the face. Student loans are very difficult to discharge during bankruptcy. Alternatively they can just keep their head down, their mouth shut, and try to help people as much as they can using 'the system'. 'The system' is a fruitless endeavor to treat chronic illness (number 1 health crisis in America) with dangerous synthetic drugs that only mask symptoms.

 

[Valentijn]

Unless you live in a state where naturopaths are licensed, it's not covered under insurance.

They are licensed where I see one, in Washington State. Normal insurance wouldn't cover them, but my Dutch insurance did when I went in for urgent OI issues. But costs are pretty reasonable, considering that appointments are longer (my first was 90 minutes, and 30 minutes thereafter), and I get a discount by paying upfront.

They also want to only sell you their vitamins, in my case Standard Process.

Yes, I'd stay away from that one. My Naturopathic Doctor made sure I knew all the ingredients of their special brand (which actually caused an amazing remission for a month or so), so I could order the ingredients myself in the Netherlands. He's also not trying to hold onto and overdrug patients - he's fixed my mom's hot flashes (not with their special brand either), and told her not to come back unless symptoms come back

Also if you live in a state where naturopaths are not licensed they can not order tests, etc.

Yup, that's a problem. Any chance of hooking up with a naturopath in a nearby state where they're licensed? Then phone appointments for most things will probably suffice. Also, you might be able to find a naturopath that is also a licensed doctor or nurse practitioner, or registered nurse, etc. Mine's a licensed ND + RN, which is great because he's into the natural stuff, but not the -really- alternative stuff, and also does the conventional medical stuff when appropriate.

 

[PNR2008]

I had the same problem in the 90's. I went to see Jay Goldstein in CA, got a lot of tests and treatments but some of the drugs had to be prescribed by a doc here for follow-up. The docs here looked at me like I was nuts. They wouldn't even call Goldstein. Finally Dr. Cash at the Cle Clinic showed interest, he heard Goldstein speak about his methods and I was ordered my first of three tilt tests. I felt happy and hopeful. Then after two appointments with Cash I learned he died in his sleep of an apparent heart attack at 42 yrs old. I can't tell you how crushed I was. Dr. Cash was head of the Rhuematology department and the doctors I saw after that were a waste of time. Even though I didn't converse with Rich Vank, his death hit me hard like Dr. Cash. I wish you luck and blessings.

 

[Vincent]

The docs here looked at me like I was nuts. They wouldn't even call Goldstein.

It's a sad state where the sick people can't even count on those who are suppose to cure sickness to take any genuine interest. It's such a systemic problem, and it'll cause you so much additional stress just trying to deal with it. I for one have disconnected from it.

Most dr's wont even fill out forms unless you pay them. I had one pain management dr who charged 250 dollars if you missed an appointment. They also make you sign a pain 'contract' where promise to not use your drugs in an unathorized manner and agree to random pill counts, etc. I'd rather just manage my pain myself.

 

[PNR2008]

Thanks for your repy Vincent, I'm in a very bad way today and I greatly appreciate the communication. I too recently went to a pain Mgm dr and had to sign that Pain Contract but they should not have worried.. T he two drugs he prescribed were so expensive I could never get them. One was $700. a month. So I am taking Vicodin. It works, it's cheap and he i still prescribing it for me. I never abuse any drugs, just take what I need to fake a normal life. Really I am very tired of the fight. and I believe we all have to manage on our own.

 

[Vincent]

Thanks for your repy Vincent, I'm in a very bad way today and I greatly appreciate the communication. I too recently went to a pain Mgm dr and had to sign that Pain Contract but they should not have worried.. T he two drugs he prescribed were so expensive I could never get them. One was $700. a month. So I am taking Vicodin. It works, it's cheap and he i still prescribing it for me. I never abuse any drugs, just take what I need to fake a normal life. Really I am very tired of the fight. and I believe we all have to manage on our own.

Yes I was on Butrans, still am. It wasn't 700 but it was a little over 200 dollars per RX. I'm taking myself off it by cutting the patch. It was certianly effective, more so in the beginning. It's effectiveness seemed to wain, and now that I'm coming off of it I don't feel any more in pain.

Like you I also have Vicoden for when I need it. I have found now that I'm more active, since starting the narcotic patch, my need for drugs has diminished. Once you get in that viscous cycle of inactivity and causes more pain, that causes more inactivity, you need drugs to bail you out.

 

[GracieJ]

Just a side note here to clarify something above -- Standard Process products are one of the highest quality herbal products to be found anywhere, if not THE highest quality product. They are "under lock and key" because like anything else that works, the FDA is dying to monitor them, if not throw them out completely. If produced today new for the first time, several products would be considered prescription medications. As they were first produced about 100 years ago, they are grandfathered in, and yes, they can be very hard to get. However, you STILL have a legal right to buy them without a practitioner's recommendation, and I do at my local health food store. You do have to know what to ask for, you can't just shop. They will ask for a practitioner name to cover their own tail... but it is not required, just "suggested" or something, and you will often be told no straight out without a name. Know that that is illegal. With these, it is best to start with a practitioner, but many of the products do not need someone following you, like the high-quality calcium tablets. They've just been lumped in all together. The nice thing about Standard Process products is THEY WORK extremely well.

Just a thought if you ever again are offered these...