Overwhelmed and discouraged after doctor visit

[taniaaust1]

True, and I may have misread it, but for me if a doctor told me I was the only one of all her patients who had not improved in two years and she was at the point of not having anything left to try, I would not find that helpful and feel like I had done something wrong (but that is just me)!

nods agree, it wouldnt leave a person feeling very good.

 

[Zombie_Lurker]

None of the doctors I see around here have a clue about ME/CFS and some of them just want me to exercise or see a psychiatrist. I know how tough it can be to have this disease and work with doctors.

 

[valentinelynx]

It's just a thought - I don't know if the doctor's at OMI have time or inclination, but if your doctor would like to ask another "expert" for advice on what to try next, it is a common practice.

Maybe your doctor would be willing to call Dr Kaufman or Dr Kogelnik (sp?) at the Open Medicine Clinic in Mountain View, CA to ask for advice on further workup and/or treatment. Dr Kaufman prescribes Mestinon, so he can advise about that at the very least.

Open Medicine Clinic (OMC)
tel: (650) 691-8633
fax: (650) 644-0259

 

[Valentijn]

@jlynx - Which infections have you been tested for? Maybe you have something bacterial in additional to whatever viral stuff was going on.

 

[TrixieStix]

Yes, I know no doctor is perfect but I don't appreciate discouraging comments. She acts like we've tried every single thing, which we haven't, and I don't want to give up until we do. She said something similar the last visit too along the lines of "I don't want to give up on you but I'm really out of ideas other than this and this".

I'm actually not sure if no other patient has failed to get better but she did specifically say I'm the only patient where she can't figure it out, so that's what it sounds like. Maybe I'm just the first 'complicated' patient they've had...

The fact that we are left to navigate this illness with primary care physicians is insane, but it's all most of us have at the moment. This is a disease whose cause is unknown and for which no effective standardized treatments exist. She will need to accept that she cannot fix you? I'm sorry your having to deal with all this. Is she educated about any current research, guidelines re: ME/CFS? If she will not be able to diagnose you. My primary doctor who is educated about it to a degree admits to me he has no idea what to do for me other than diagnose me. He has asked me to do the leg work and bring him printouts that can help guide him with diagnosis, etc.

The Institute of Medicine produced a 20 page "clinician's guide" last year as part of their big ME/CFS report. This was done on behalf of the federal government so it should hold clout with your doctor if your are in the US. I printed it out and took it to my doctor. Perhaps you could try it as it lays out the current diagnosis criteria in an easy to understand manner.

http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFScliniciansguide.pdf

 

[trishrhymes]

Hello, I do sympathise with you - telling you that her other patients have all improved within 2 years is unkind and hard to believe. I wonder whether those who have not improved have changed doctors, so she doesn't know about them. It sounds as though she has at least been willing to try you on several treatments which is good. I think it's good that she's honest with you that she doesn't know what else to do. After all, there is no known cure that works for everybody, or even for most people, which is why most of us are still sick.

If you were in the UK, all you'd be likely to get is something to help you sleep, standard pain killers, and bad advice to exercise more.

I wonder whether you have tried the non-medical approach, focusing on getting enough rest using pacing, a heart rate monitor to help you work out when you are overdoing things, or 'aggressive rest therapy'. There's lots of discussion of these on other threads here.

 

[Effi]

@jlynx I really sympathise with you, as I recently had to go to a new GP who was absolutely clueless, but was convinced she wasn't... Didn't recognize any of the very typical symptoms we all have. If your doctor says you're the only patient that hasn't gotten better I would guess it's probably because you're her only ME/CFS patient? Please don't get discouraged. I know it's hard, but take it one step at a time and you might end up finding something that helps.

 

[jlynx]

Has you been tested for orthostatic problems? If not or if not recently, it would be a very good idea if you are as that can cause all those symptoms including possibly a low grade fever eg I get dehydration with my POTS (with the low blood volume thing) and that dehydration can cause me to go into a low grade fever.

hyperadrenalic POTS will send the BP up and the pulse up esp when upright.

http://www.everydayhealth.com/news/unusual-signs-of-dehydration/ (note if you have POTS, it is possible that one can drink large amounts and still be dehydrating).

I have not been tested for it. The good thing is she approved the Mestinon and I started taking it today. It's often used as a treatment for POTS so if I have it, it could possibly help.

I also get dehydrated very easily and need to be drinking water constantly.

 

[jlynx]

@jlynx - Which infections have you been tested for? Maybe you have something bacterial in additional to whatever viral stuff was going on.

EBV, HHV-6 (have), Parvo (have), CMV- I think everything. I did three months of abx and didn't improve.

The fact that we are left to navigate this illness with primary care physicians is insane, but it's all most of us have at the moment. This is a disease whose cause is unknown and for which no effective standardized treatments exist. She will need to accept that she cannot fix you? I'm sorry your having to deal with all this. Is she educated about any current research, guidelines re: ME/CFS? If she will not be able to diagnose you. My primary doctor who is educated about it to a degree admits to me he has no idea what to do for me other than diagnose me. He has asked me to do the leg work and bring him printouts that can help guide him with diagnosis, etc.

The clinic I go to is a Holtorf clinic so she should be pretty well-read in CFS. Which is why I was surprised to hear her say I'm the only patient she can't figure out.

 

[L'engle]

@jlynx I once had a naturopath tell me I was the only patient she'd ever had not improve, after trying candida supplements and diet. I had improved a bit but she seemed mystified at the idea that her treatments hadn't cured all. I think many people with other conditions move on and never go back to the original doctor so they don't hear about all their patients who didn't improve.

 

[jlynx]

@jlynx I once had a naturopath tell me I was the only patient she'd ever had not improve, after trying candida supplements and diet. I had improved a bit but she seemed mystified at the idea that her treatments hadn't cured all. I think many people with other conditions move on and never go back to the original doctor so they don't hear about all their patients who didn't improve.

True, or they give up and stop going, or have to stop going or go somewhere else for financial or other reasons.

 

[Effi]

I think many people with other conditions move on and never go back to the original doctor so they don't hear about all their patients who didn't improve.

That's a mistake I think quite a lot of doctors make: to think that if someone doesn't come back, it's because they're symptom free. Not true in most cases.

 

[TakMak]

On my first visit to my current GP a couple of years ago he told me 'that the problem with people with ME is so often that they've just given up on life'. I tried to put him right on that but I'm not convinced he thinks it's a real condition. Indeed, he still feels the need to say things like 'I do believe you' when I have visited more recently.

 

[IreneF]

EBV, HHV-6 (have), Parvo (have), CMV- I think everything. I did three months of abx and didn't improve.



The clinic I go to is a Holtorf clinic so she should be pretty well-read in CFS. Which is why I was surprised to hear her say I'm the only patient she can't figure out.

There has been at least one thread about Holtorf. IIRC, many people thought they were in it for the money and didn't help patients.

 

[taniaaust1]

That's a mistake I think quite a lot of doctors make: to think that if someone doesn't come back, it's because they're symptom free. Not true in most cases.

I had a CFS specialist who believed I'd recovered when I didnt get back to him. The reason why I didnt get back to him was cause I'd got a lot worst.

 

[taniaaust1]

On my first visit to my current GP a couple of years ago he told me 'that the problem with people with ME is so often that they've just given up on life'. I tried to put him right on that but I'm not convinced he thinks it's a real condition. Indeed, he still feels the need to say things like 'I do believe you' when I have visited more recently.

I would never have gone back to a dr who said that about his ME patients. The ones who act nice but are talking behind your back bad about you are some of the worst ones you can come across and have potential to end up causing a lot of harm.

 

[TakMak]

I would never have gone back to a dr who said that about his ME patients. The ones who act nice but are talking behind your back bad about you are some of the worst ones you can come across and have potential to end up causing a lot of harm.

Indeed. I'm still not sure what he makes of me. However, I have been trying to 'educate' him in my time with him. I think I may have altered his viewpoint somewhat and this can only be a good thing if he encounters another ME sufferer. That said, I've never been offered some of the tests that other members on here have been offered. Mostly I am resigned to my current state and only if my symptoms get worse do I bother to visit him.

 

[jlynx]

There has been at least one thread about Holtorf. IIRC, many people thought they were in it for the money and didn't help patients.

I don't think I believe this, personally. I think my previous doctor there could have been more proactive with trying different things instead of some appointments feeling pointless where he didn't even suggest new things. It was me who was bringing up new stuff to try all the time. But he did all the right things and was very knowledgable. He also was a big supplement pusher, but I know a lot are. I like my doctor now a lot better. She doesn't push supps at all and suggests where to find them cheaper on Amazon and other sites.

Also since I started going there, the costs for visits went up which is messed up.

Based off what she said at my last appointment, it would be pointless to keep going there since she's given up on me basically. She wants to keep trying LDI but I haven't seen results with it. I will try the naturopath she referred me to. He is a genetic counselor so I'll be taking my 23andMe results once I get them to see if he can help with any potentially useful information it provides. I haven't tried Methylation yet but I want to be sure I do it right, and he knows all about it.