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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Medicare Covered Treatment Options

sparklehoof

Senior Member
Messages
186
Location
North Carolina
Hi,
I was wondering if anyone has found goods doctor and or treatment options that are covered under Medicare?
I currently live in RI and am hoping to move to San Diego or Tucson (to see if the weather helps my health.) When I move will depend on my family, so it could be in two weeks or two years. My health declines between August- the first week of June and so I've been getting progressively worse. I'm having more severe brain fog and am in an area where I have poor phone reception, but I'm trying to figure out what I can do to try to improve my symptoms while I wait indefinitely to move.

If anyone has had treatments or tests covered by Medicare- I'd love to learn about your experiences-- especially if you've had a OI/tilt table testing, Exercise intolerance, MTHFR, etc.

My major symptoms are:
Fatigue
Headaches/Pressure in head/neck
Cognitive Problems
Dizziness

Thanks for your suggestions
 

JalapenoLuv

Senior Member
Messages
299
Location
unknown
Your best bet would be to call Blue Cross Blue Shield in AZ and Medicare and ask them. I found this policy bulletin from 2012 that claimed it was experimental but that doesn't mean it is what they go by. There are two types of Medicare plans. Straight medicare covers 80% of negociated costs.

2013
https://www.wellcare.com/WCAssets/corporate/assets/ccg/ccg_tilt_table_testing_08_2013.pdf
Not covered in NY, IL

I have a medicare advantage plan and they have been good with antibiotics but don't cover integrative treatment because the provider won't take medicare.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
I was given this info from someone who does a support group in MA.

Dr Roy Fr (sp?) Neurologist/dysautomia specialist

617-632-8454

Secretary is Makela

GG

PS Let me know how this works out! I don't have insurance, so I have not reached out to this office yet.
 

sparklehoof

Senior Member
Messages
186
Location
North Carolina
I tried doing a reverse phone number lookup, with little luck. I also tried a search for Dr. Fr. and Dr. Roy Fr but only found a Brenda Roy. Any thoughts? :)
 

sparklehoof

Senior Member
Messages
186
Location
North Carolina
Your best bet would be to call Blue Cross Blue Shield in AZ and Medicare and ask them. I found this policy bulletin from 2012 that claimed it was experimental but that doesn't mean it is what they go by. There are two types of Medicare plans. Straight medicare covers 80% of negociated costs.

2013
https://www.wellcare.com/WCAssets/corporate/assets/ccg/ccg_tilt_table_testing_08_2013.pdf
Not covered in NY, IL

I have a medicare advantage plan and they have been good with antibiotics but don't cover integrative treatment because the provider won't take medicare.

Thank you.
 

sparklehoof

Senior Member
Messages
186
Location
North Carolina
Hi,
I was wondering if anyone has found goods doctor and or treatment options that are covered under Medicare?
I currently live in RI and am hoping to move to San Diego or Tucson (to see if the weather helps my health.) When I move will depend on my family, so it could be in two weeks or two years. My health declines between August- the first week of June and so I've been getting progressively worse. I'm having more severe brain fog and am in an area where I have poor phone reception, but I'm trying to figure out what I can do to try to improve my symptoms while I wait indefinitely to move.

If anyone has had treatments or tests covered by Medicare- I'd love to learn about your experiences-- especially if you've had a OI/tilt table testing, Exercise intolerance, MTHFR, etc.

My major symptoms are:
Fatigue
Headaches/Pressure in head/neck
Cognitive Problems
Dizziness

Thanks for your suggestions[/quote
Your best bet would be to call Blue Cross Blue Shield in AZ and Medicare and ask them. I found this policy bulletin from 2012 that claimed it was experimental but that doesn't mean it is what they go by. There are two types of Medicare plans. Straight medicare covers 80% of negociated costs.

2013
https://www.wellcare.com/WCAssets/corporate/assets/ccg/ccg_tilt_table_testing_08_2013.pdf
Not covered in NY, IL

I have a medicare advantage plan and they have been good with antibiotics but don't cover integrative treatment because the provider won't take medicare.



Thank you so much for your reply, I appreciate it very much. I don't have BCBS/Medicare Advantage, but rather Medicare and Medicaid. From what I've read on the Medicare site, the tests that I listed aren't covered-- perhaps it was wishful thinking to hope that there may be a way around it. Maybe one day:). Thank you again.
 

JAM

Jill
Messages
421
I lived in Tucson for years and the heat made my symptoms worse, something to consider if your symptoms are triggered by temperature. October-April is amazing though.
 

JalapenoLuv

Senior Member
Messages
299
Location
unknown
It looks like all the HMO companies are excluding exercise testing for chronic fatigue syndrome. So the SSA is being really sneaky by requiring something that nobody can afford to get because it isn't covered.

http://www.aetna.com/cpb/medical/data/800_899/0825.html

If you don't have any income I would go to a state run med school and apply for charity care then ask for your doctor to refer you for the exercise test there. I did that to get neuropsychological testing and it won my disability case. SSA laughed at my CFS claim and only gave it to me under undifferentiated somatoform disorder due to the testing.
 

sparklehoof

Senior Member
Messages
186
Location
North Carolina
I lived in Tucson for years and the heat made my symptoms worse, something to consider if your symptoms are triggered by temperature. October-April is amazing though.
Thank you for sharing your experience. I will consider this. I'm sorry to hear that it made your symptoms worse.
It seems my symptoms are at their worst with cold and damp and on days where it's a mix of rain and sun.
Where do you live now? Is it better for you?
 

JAM

Jill
Messages
421
Thank you for sharing your experience. I will consider this. I'm sorry to hear that it made your symptoms worse.
It seems my symptoms are at their worst with cold and damp and on days where it's a mix of rain and sun.
Where do you live now? Is it better for you?
Mine used to be that way and I loved the summers in Tucson, but once my symptoms increased to the point I couldn't leave the house my inner thermostat went berserk!

We now live in the mountains of northern New Mexico and it is very cold, my body liked it for a while. Now that I am getting better with the OLE that might change back or even out, who knows what my body will do when healthy.
 
Messages
15,786
It looks like all the HMO companies are excluding exercise testing for chronic fatigue syndrome. So the SSA is being really sneaky by requiring something that nobody can afford to get because it isn't covered.
It's considered experimental when used as the primary means of diagnosis of ME/CFS. However, they consider it medically necessary in other situations which would apply to ME/CFS patients - forming exercise programs (usually limiting heart rate in our case), and differentiating between heart and lung problems (often useful for us in ruling things out).

Furthermore SSA most certainly does not explicitly require the use of the CPET. It's simply a very useful way for anyone to prove disability.
 

JalapenoLuv

Senior Member
Messages
299
Location
unknown
It's considered experimental when used as the primary means of diagnosis of ME/CFS. However, they consider it medically necessary in other situations which would apply to ME/CFS patients - forming exercise programs (usually limiting heart rate in our case), and differentiating between heart and lung problems (often useful for us in ruling things out).

Furthermore SSA most certainly does not explicitly require the use of the CPET. It's simply a very useful way for anyone to prove disability.

Actually the Aetna policy above excludes exercise testing for everything except for a small number of specific diseases, heart disease, etc. So I think you're wrong.