Advice for infectious disease visit?

[Ocean]

I've been referred to infectious disease. The doctor I'm going to I've seen before and my impression was that this doctor is very thorough but not necessarily familiar with the more specialized issues involving CFS. I have a list of tests done at Stanford for CFS. Aside from that, is there anything you'd advise me to ask or mention? My symptoms included elevated body temperature, flu like symptoms, head and face pain, fatigue, PEM, POTS symptoms, sensitivity to medicines and supplements, muscle loss and weakness, facial flushing, inflammation, and more. I really don't have anything specific to ask other than about my fevers, and just wanted to check to see if there may be something others have thought of that I'm overlooking. Thank you.

 

[heapsreal]

Ocean, you look like u have it all covered. good luck , i hope it go's well for you.
I just dont think there is a 'specialist' that is helpful for cfs/me other then a doctor who has done his own research and seen alot of cfs patients and is willing to try different treatments. I hope this guy you see has some answers for you. keep us all postered.

cheers!!!

 

[IreneF]

It depends on the tests you've already had and what conditions have been excluded. The official line on CFS is that there is no treatment, so you really want to be diagnosed with something else. Anything else. Make sure to ask about autoimmune diseases and immunodeficiencies.

I don't know how practical it is to get natural killer cell function tested, since it has to be done with fresh blood and most labs can't run the test, but if you can show a measurable abnormality it may help you get taken more seriously because it is something concrete and measurable. It may also help if you experience problems with insurance coverage because it can be considered an immune deficiency.

Irene

 

[K2 for Hope]

Article from http://www.prohealth.com/me-cfs/library/showarticle.cfm?libid=16952

Titled "Hot Topics and Readers' Notes - 05-02-12" from ProHealth/

Don't know if this has come out yet, I couldn't get the link to work and don't know how in-depth it is:

Help the IACFS/ME Distribute Its New Guide to Doctors

In the Spring IACFS/ME newsletter, President Fred Friedberg, PhD, announced "the upcoming release (probably in May) of the IACFS/ME Primer for Clinical Practitioners. The primer contains basic information on the assessment, diagnosis and treatment of patients with ME/CFS.

"Our goal is to disseminate the primer to general practitioners - particularly general practice physicians who may not be familiar with ME/CFS. Also we would like to make the primer available to government health agencies worldwide including the CDC, NIH, and AHRQ. If you have any ideas on how best to publicize and circulate the primer, please contact me at: fred.friedberg@stonybrookmedicine.edu"

You can read more about the new ME/CFS primer for GPs HERE.

Members of the committee who developed the primer are Rosemary Underhill, Rosamund Vallings, Lucinda Bateman, Alan Gurwitt, Charles Lapp, Alison Bested, Ken Friedman, Leonard Jason, Staci Stevens, and Todd Davenport. It is the organization's hope that this primer will "help to educate providers wordwide about ME/CFS."

 

[Ocean]

Thanks everyone. I'm not expecting a ton, like heapsreal said, when a doctor isn't well versed in CFS. But hopefully I can get everything looked into as well as is possible given the circumstance. K2forHope thank you, I will take a look at that link.

 

[xchocoholic]

Gluten intolerance, h pylori, parasites and all those infections that co-exist with Lyme. tc .. X

 

[Sushi]

I've been referred to infectious disease. The doctor I'm going to I've seen before and my impression was that this doctor is very thorough but not necessarily familiar with the more specialized issues involving CFS. I have a list of tests done at Stanford for CFS. Aside from that, is there anything you'd advise me to ask or mention? My symptoms included elevated body temperature, flu like symptoms, head and face pain, fatigue, PEM, POTS symptoms, sensitivity to medicines and supplements, muscle loss and weakness, facial flushing, inflammation, and more. I really don't have anything specific to ask other than about my fevers, and just wanted to check to see if there may be something others have thought of that I'm overlooking. Thank you.

Ocean,

You might take some articles by Dr. Montoya at Stanford as he is very well respected in the Infectious Disease world and also treats ME/CFS and has probably published somewhere the tests he prescribes.

Sushi

 

[Ocean]

Thanks Sushi. I have the list of tests from Stanford and I think have a list from Dr. Montoya too, they may be about the same thing. I have to dig them up. I haven't looked at his articles though, might take a look there.

As for the other suggestions, I didn't realize I.D. doctors looked at stuff like gluten intolerance and autoimmune stuff. If they do, I will definitely ask about that too.

If anything comes of the visit, I'll definitely let everyone know.

 

[xchocoholic]

As for the other suggestions, I didn't realize I.D. doctors looked at stuff like gluten intolerance and autoimmune stuff. If they do, I will definitely ask about that too.

If anything comes of the visit, I'll definitely let everyone know.

Hi,

I really didn't know but thought I'd put it out there anyways. I'm assuming a thorough doctor would be happy to test for celiac disease and/or the gene.

My main purpose was to point out testing for the lyme co-infections. I just added the other while editing. I understand, but don't know personally, that these tests are within traditional medical guidelies.

Tc .. X

 

[taniaaust1]

I dont know if it exists in your country but you may want to look to see if Rickettsia does exist in your country... as it can often coexist with ME/CFS and treating it if found, may help.

(there is a doctor in Australia who has found it in half of his CFS patients tested positive for it and another doctor who is in Sth Africa who was right into the ME/CFS and rickettsia stuff as well. If found.. treating this co-existing thing? could be helpful. I dont think this has been looked into in other parts of the world so far)..