How to respond to my doctor...

[guvaika]

Thank you guys for your input... It definitely helps. And I don't feel so alone facing this shit.

Just an update: I wrote my doctor back and told her that I won't be looking for treatment for the chronic stuff in my home area any more. I appreciate her as a GP, and will continue to see her only for general things.

I also got a very last minute appointment with Dr. Natelson in NYC. I'm on the train at the moment and will see him this afternoon. I've become so gun shy with doctors over the past two years...but I guess it's at least worth a try, perhaps.

 

[sickntired771]

It may be worth calling ahead of time to see what their protocol or thoughts are on ME/CFS to see if you are a good fit for their office. If not, why not try posting your location here and finding out whom others say is a knowledgeable doctor in your area.

 

[guvaika]

@sickntired771 Thanks so much for the advice.

Dr. Natelson is listed here http://www.cfstreatmentguide.com/doctors-and-clinics.html and in other ME/CFS databases.

 

[guvaika]

@sickntired771 Maybe I misunderstood... You're saying why not find a doctor in my city? Well, I live in Syracuse...and so far I'm finding gross lack of information in Syracuse. I'm rather not surprised. I've worked for 5 years in various sectors of the health care system here. At this point it's simpler to just go to the city (NYC).

 

[sickntired771]

Guvaika this thread has a few listed doctors who treat CFS patients in Syracuse. http://forums.prohealth.com/forums/index.php?threads/drs-in-syracuse-ny-area.113943/

 

[sarah darwins]

Just an update: I wrote my doctor back and told her that I won't be looking for treatment for the chronic stuff in my home area any more. I appreciate her as a GP, and will continue to see her only for general things.

Good (and gutsy) move, guvaika. She shouldn't have a problem with that as she has already acknowledged not knowing anything about this disease. Good luck this afternoon. Hopefully you can get the best of both worlds now. let us know how it goes.

 

[CantThink]

I hope it went well! Let us know

 

[Karena]

@sickntired771 Maybe I misunderstood... You're saying why not find a doctor in my city? Well, I live in Syracuse...and so far I'm finding gross lack of information in Syracuse. I'm rather not surprised. I've worked for 5 years in various sectors of the health care system here. At this point it's simpler to just go to the city (NYC).[/QUOTE}

Guvaika, it's great you went to NYC for a diagnosis. How are you doing now?

I've had CFS/ME for 25 years and can't believe GP's and family doctors don't know more about it. Since you've worked in the health care system, you would think doctors would be more open with and sympathetic to you. Why aren't more primary care doctors familiar with the IOM report, the NIH study, and all of the other CFS/Me research being done?

 

[JaimeS]

They get their degree and stop reading.

 

[guvaika]

Thank you to everyone asking for an update. I stayed with friends for nearly a week, and during that time I saw both Dr. Natelson and Dr. Levine.

The long-term effectiveness of their care and treatments has yet to be seen - obviously - but if the only benefit of seeing them was the validation I was given, then it was worth it. After 2 years of being discredited and treated as crazy by many doctors in my area, it restored my confidence in myself to have not one, but two separate specialists in the same week look me in the eye and say "You're not clinically depressed." I was believed. I was taken seriously. My symptoms were expected and reasonable - instead of seen as the wild creations of a psychotic mind.

I now have official CFS and POTS diagnoses for the first time. Dr. Levine has done extensive lab work checking for viral componants. Dr. Natelson ordered tests for Mast Cell issues, as well as a Glucose Tolerance test (I have some kind of hypoglycemic symptoms that no one can make sense of). Now I'm waiting for lab results and follow up appointments. In the mean time I've been told to use ORS drinks for POTS and try compression stockings - that might seem like no big deal for people here...but no doctor before this has ever given me even the slightest advice for managing symptoms.

 

[JaimeS]

In the mean time I've been told to use ORS drinks for POTS and try compression stockings - that might seem like no big deal for people here...but no doctor before this has ever given me even the slightest advice for managing symptoms.

Just drinking water sprinkled with salt and/or baking soda was the first piece of advice I received about my own POTS, and it was (shockingly!) enough to significantly abate my symptoms. Also, KDM advised me to drink 2-L of water a day... since my ANS is so off-kilter, I'd notice my mouth felt dry before I had any sensation of thirst.

Sometimes little things can be really helpful.

Including that feeling of validation. I'm so glad you found physicians who can help you!

-J

 

[guvaika]

@Karena

I don't think there is a simple answer to that. What @JaimeS said is definitely true. It's also a matter of the system forcing doctors to meet quota demands and see x number of patients per day...thus less time to read or go out of their way to study something.

I've also realized that for most doctors, at the bottom of everything they really want to do their job and help people. However, when an impossibly complex case walks through their door and there is no way in hell they can effectively treat this case...and they know that it's outside their scope of current knowledge, it's far easier to make generalizations (quote consensus statements), blame the patient, save face, and shove them back out their door. They know they've failed at this case before they've begun and they don't have time or interest in (or desire to risk) curiosity

There are many other factors, but these are what I witness on the surface.

 

[Karena]

@Karena

I don't think there is a simple answer to that. What @JaimeS said is definitely true. It's also a matter of the system forcing doctors to meet quota demands and see x number of patients per day...thus less time to read or go out of their way to study something.

I've also realized that for most doctors, at the bottom of everything they really want to do their job and help people. However, when an impossibly complex case walks through their door and there is no way in hell they can effectively treat this case...and they know that it's outside their scope of current knowledge, it's far easier to make generalizations (quote consensus statements), blame the patient, save face, and shove them back out their door. They know they've failed at this case before they've begun and they don't have time or interest in (or desire to risk) curiosity

There are many other factors, but these are what I witness on the surface.

I'm happy you saw Dr. Natelson and Dr. Levine. At least, you'll probably get as good care as anyone with CFS/ME can get in the U.S.

I also appreciate the POTS tips from you and JaimeS. Sometimes little things can mean the difference between being able to go out for a short time or having to spend the afternoon on the couch. I'm always trying to do as much as I can without doing too much!

 

[guvaika]

@Karena I feel so fortunate to be able to see both Dr. Levine and Dr. Natelson.

So quick update. I had a follow up phone call with Dr. Levine yesterday afternoon. My labs came back positive for HHV6 and CMV. She's already ordered Valcyte for me to start immediately. She was short on time...so I don't know the dose yet. I've been reading as much as possible since yesterday. And now I'm honestly a bit scared.

I'm kicking myself because with all the research I've done to get to the bottom of my illness over the past two years, I completely ignored viral componants. I seriously didn't think this would be a concern for me. So now I'm caught off guard and clueless.

What's worrying me is that I'm extremely sensitive to meds of any sort. I have a roommate, she's a great friend, but I don't have anyone who helps take care of me. Most days I'm on my own - which has been a problem before when PEM is really bad. Anyway, my roommate is planning to travel all weekend - so I'll be completely alone. And if I start Valcyte and experience side effects?? I'm probably just exaggerating the risk in my head and I'll be fine.

Also, Dr. Levine's labs were positive for anti-parietal cell antibodies. She mentioned vitamin B12 shots, but nothing we'll pursue right now. She said other labs indicated weakened immune system. But I won't see the labs for myself until my follow-up with her on March 23.

 

[Mel9]

Just drinking water sprinkled with salt and/or baking soda was the first piece of advice I received about my own POTS, and it was (shockingly!) enough to significantly abate my symptoms. Also, KDM advised me to drink 2-L of water a day... since my ANS is so off-kilter, I'd notice my mouth felt dry before I had any sensation of thirst.

Sometimes little things can be really helpful.

Including that feeling of validation. I'm so glad you found physicians who can help you!

-J

I also got my advice to take electrolytes here. PR has been the most helpful source of advice to me

 

[Karena]

@Karena I feel so fortunate to be able to see both Dr. Levine and Dr. Natelson.

So quick update. I had a follow up phone call with Dr. Levine yesterday afternoon. My labs came back positive for HHV6 and CMV. She's already ordered Valcyte for me to start immediately. She was short on time...so I don't know the dose yet. I've been reading as much as possible since yesterday. And now I'm honestly a bit scared.

I'm kicking myself because with all the research I've done to get to the bottom of my illness over the past two years, I completely ignored viral componants. I seriously didn't think this would be a concern for me. So now I'm caught off guard and clueless.

What's worrying me is that I'm extremely sensitive to meds of any sort. I have a roommate, she's a great friend, but I don't have anyone who helps take care of me. Most days I'm on my own - which has been a problem before when PEM is really bad. Anyway, my roommate is planning to travel all weekend - so I'll be completely alone. And if I start Valcyte and experience side effects?? I'm probably just exaggerating the risk in my head and I'll be fine.

Also, Dr. Levine's labs were positive for anti-parietal cell antibodies. She mentioned vitamin B12 shots, but nothing we'll pursue right now. She said other labs indicated weakened immune system. But I won't see the labs for myself until my follow-up with her on March 23.

It's good that they're taking your case and treatment seriously. Just be sure to discuss all of your concerns with the doctors. Maybe your local doctor could be involved somehow. At least, he or she should be aware of the Valcyte in case you have problems.

Good luck!

 

[rosie26]

Just drinking water sprinkled with salt and/or baking soda was the first piece of advice I received about my own POTS, and it was (shockingly!) enough to significantly abate my symptoms. Also, KDM advised me to drink 2-L of water a day... since my ANS is so off-kilter, I'd notice my mouth felt dry before I had any sensation of thirst.

Sometimes little things can be really helpful.

Including that feeling of validation. I'm so glad you found physicians who can help you!

-J

@JaimeS how long have you been drinking water with salt and baking soda added? How much baking soda do you add? I would like to try this for a week.

Also, I think I have read somewhere that you have had burning in the lungs? Did you find anything that eased it?

 

[JaimeS]

@JaimeS how long have you been drinking water with salt and baking soda added? How much baking soda do you add? I would like to try this for a week.

Also, I think I have read somewhere that you have had burning in the lungs? Did you find anything that eased it?

When it comes to the salt and baking soda, less is more. A pinch or two of salt in a pretty reasonably-sized glass of water -- I always say on here that the 'mouthfeel' should change to be a bit more slippery, but the water shouldn't taste salty per se. Same for the baking soda: a few pinches in water whenever you drink; or, if you like other minerals too (and don't struggle with them) a fizzy water like Gerolsteiner that already has sodium bicarbonate in it. That's maintenance.

If you are crashy, but twice that much baking soda in your water, but take a few sips at a time only.

I've been doing this for quite some time, though honestly only when I'm not doing well (lately). For awhile after I was dxed with POTS, I was doing it just about every day.

...burning in the lungs? Nah, but I have had stabby lung pains! Maybe burnination when I have trouble breathing. If it's going to be a bad breathing day, my lungs ache and burn slightly. I've speculated that this is because I'm actually taking deeper and deeper breaths and don't notice until I'm in an 'air hunger' place, but it could be for a totally different reason that these events are correlated. Still, not breathing so deeply seems to help that (baking soda in water); so does anything that boosts my immune function (Lactoferrin).

It is not for us to ask why, though. Seriously, I have speculation only.

-J

 

[rosie26]

I will try it and see if it helps in any way. I breathe hard a lot because I am overdoing it Very hard to stay within ones limits all the time. I think I have become even more sensitive where my lungs are concerned.

 

[JaimeS]

Yeah, do check it out. I don't have breathing issues with exertion, I have them in general, so it may be a different kettle of fish.

-J