Overwhelmed and discouraged after doctor visit

[jlynx]

I had another rather disappointing doctor appointment today... I've been through the ringer and have tried most things but my doctor said she is basically stumped and doesn't know what else to try. She said I'm the ONLY patient at their clinic who has failed to have some improvement by now (approaching two years). My CFS started around 2010 and I am 23 now.

Did one year of Valcyte for HHV-6, corrected deficiencies, supplements, LDN, etc. (too foggy to think right now). Today I:

- Tried a stronger dose of LDI for possible reactivated Lyme. (Did three shots prior, several months ago. I also did 3 months of abx to no effect.)
- Was recommended to get the 23andMe test. Is the $200 really worth it?
- My Pregnenolone was a little low so I'm going to start taking that.
- I am going to try Armour instead of straight T3.
- I asked about trying Mestinon but she has to look into it first since she's never prescribed it before.

My cortisol tested fine but I'm aware that blood tests are not reliable at all and it should be a saliva test. I forgot to mention this to her.

One more thing- my pulse and blood pressure have been very high the last couple visits. Also the last two visits I've had a low grade fever. (I have not had a cold or 'regular' sickness.) She advised me to see a PCP about this. What are the possible causes of this?

 

[Gingergrrl]

She said I'm the ONLY patient at their clinic who has failed to have some improvement by now (approaching two years).

I find that incredibly hard to believe and if she (whoever she is!) has cured all of her other patients in less than two years, we would have heard about her by now. It sounds like a way of blaming the patient vs. just saying, "I don't know". I will have been sick for four years in Jan 2017 and I have some good doctors. I am no where near giving up but these are complex illnesses (all of them) and I find her statement to you maddening b/c it sounds like you are doing everything that you can to get better. Don't lose hope.

 

[Old Bones]

Also the last two visits I've had a low grade fever. (I have not had a cold or 'regular' sickness.) She advised me to see a PCP about this. What are the possible causes of this?

@jlynx I, too, had a low-grade fever for the first 20 years with ME. It never exceeded 101 degrees F, and rarely this high -- more commonly around 100. I always attributed it to an overactive immune system because like you, I rarely got colds or other infections. But, to concur with @Gingergrrl, these are complex illnesses. About seven years ago, my low-grade fever changed to a sub-normal body temperature. I expected my severe colds/bronchitis (once or twice a year) to resume. That hasn't happened, as I've had no colds, and one flu, since my fever left. Go figure!

All I can say is that "low-grade fever" appears in many lists of ME symptoms. I won't bother to direct you to the research report that attributes fever in CFS to psychological distress!!! But, I did find the following link:

http://www.livestrong.com/article/250540-causes-of-fatigue-and-low-fever/

It's probably not the most reputable source, especially considering the suggestion of low-intensity exercise for CFS. However, it does provide a number of other causes to consider.

Good luck in your attempt to obtain supportive medical care. Sadly, disappointing doctor visits are all too common with this illness.

 

[Mary]

@jlynx - re your high pulse and blood pressure - it could be caused by a number of things, including low potassium and various medications. Have you tried any of the methylation supplements - B12 and methylfolate in particular? Starting these can cause potassium levels to tank which can blood pressure and heart rate to go up.

Or are you taking any new medications or new supplements? For new symptoms, I always look at anything new I'm doing - e.g., licorice can raise blood pressure.

I agree with @Gingergrrl - I seriously doubt you are the only one who hasn't made any progress. Most of the progress I have made is through my own research and experimentation. Doctors have not been able to help me hardly at all. The best doctors I have found are the ones who listen to me and are willing to work with me - e.g., order a certain test. Hopefully yours will order the saliva cortisol test for you.

One thing that's a bit off the wall that has helped me is muscle testing done by chiropractors. It helped me with several different digestive issues and weak adrenals. I would have been much worse off without this.

Maybe if you post about one particular symptom you're having difficulty with, and what you have tried, you can find others here who have dealt with the same thing and maybe get some answers. I think you're more likely to find answers here than at your doctor's.

 

[jlynx]

I find that incredibly hard to believe and if she (whoever she is!) has cured all of her other patients in less than two years, we would have heard about her by now. It sounds like a way of blaming the patient vs. just saying, "I don't know". I will have been sick for four years in Jan 2017 and I have some good doctors. I am no where near giving up but these are complex illnesses (all of them) and I find her statement to you maddening b/c it sounds like you are doing everything that you can to get better. Don't lose hope.

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...

 

[jlynx]

@jlynx I, too, had a low-grade fever for the first 20 years with ME. It never exceeded 101 degrees F, and rarely this high -- more commonly around 100. I always attributed it to an overactive immune system because like you, I rarely got colds or other infections. But, to concur with @Gingergrrl, these are complex illnesses. About seven years ago, my low-grade fever changed to a sub-normal body temperature. I expected my severe colds/bronchitis (once or twice a year) to resume. That hasn't happened, as I've had no colds, and one flu, since my fever left. Go figure!

All I can say is that "low-grade fever" appears in many lists of ME symptoms. I won't bother to direct you to the research report that attributes fever in CFS to psychological distress!!! But, I did find the following link:

http://www.livestrong.com/article/250540-causes-of-fatigue-and-low-fever/

It's probably not the most reputable source, especially considering the suggestion of low-intensity exercise for CFS. However, it does provide a number of other causes to consider.

Good luck in your attempt to obtain supportive medical care. Sadly, disappointing doctor visits are all too common with this illness.

That's what I figured... Probably not even worth seeing a regular doctor about.

Thank you!

 

[jlynx]

@jlynx - re your high pulse and blood pressure - it could be caused by a number of things, including low potassium and various medications. Have you tried any of the methylation supplements - B12 and methylfolate in particular? Starting these can cause potassium levels to tank which can blood pressure and heart rate to go up.

Or are you taking any new medications or new supplements? For new symptoms, I always look at anything new I'm doing - e.g., licorice can raise blood pressure.

I agree with @Gingergrrl - I seriously doubt you are the only one who hasn't made any progress. Most of the progress I have made is through my own research and experimentation. Doctors have not been able to help me hardly at all. The best doctors I have found are the ones who listen to me and are willing to work with me - e.g., order a certain test. Hopefully yours will order the saliva cortisol test for you.

One thing that's a bit off the wall that has helped me is muscle testing done by chiropractors. It helped me with several different digestive issues and weak adrenals. I would have been much worse off without this.

Maybe if you post about one particular symptom you're having difficulty with, and what you have tried, you can find others here who have dealt with the same thing and maybe get some answers. I think you're more likely to find answers here than at your doctor's.

I take vitamin D, C, Potassium, Magnesium, B-Complex, Cat's Claw, Omega 3, zinc, Adrenal support, T3. Nothing new recently. I do have mild anxiety so I wonder if it could simply be from that. Driving and going to appointments stress me out and give me anxiety.

I agree with having to 'be your own doctor'. I realized within a few visits that I would not get very far if I wasn't doing my own research and coming up with things to try. Sometimes I think I'm just paying huge bucks to have someone prescribe me stuff. That's an exaggeration, but I really have learned so much from this disease.

RE the chiropractor, I am seeing one for neck pain and scoliosis, but I don't think they do muscle testing. Adjustments have improved my posture but have done nothing for the CFS.

 

[CFS_for_19_years]

My cortisol tested fine but I'm aware that blood tests are not reliable at all and it should be a saliva test. I forgot to mention this to her.

Cortisol blood tests are reliable for ruling out adrenal insufficiency, provided the blood draw is done between 7 and 9 a.m. Saliva taken at the same time would mirror blood results.
Midnight salivary cortisol is useful for ruling out Cushing's syndrome (elevated cortisol) and other instances of elevated night time cortisol.
Saliva samples taken at four times during the day can be useful if you can find someone to interpret the pattern you get.

One more thing- my pulse and blood pressure have been very high the last couple visits. Also the last two visits I've had a low grade fever. (I have not had a cold or 'regular' sickness.) She advised me to see a PCP about this. What are the possible causes of this?

Were you allowed to sit quietly for five minutes prior to having your blood pressure taken? Not allowing enough time to sit still can give a falsely elevated blood pressure and pulse. Are you taking any supplements or medications that could increase your blood pressure?

I'll have to go along with everyone else regarding the low-grade fever. I lived with it for years and then it went away. It's just one of those symptoms that shows up even though you don't have a cold or flu.

 

[Gingergrrl]

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...

@jlynx I wanted to clarify and agree that no doctor is perfect and I hope you knew my comments were directed at her and not at you! I didn't mean them at all to be discouraging vs. that I just don't believe her when she says that you are the only patient that has not been helped in two years. This comment (for me) would be very unhelpful and make me feel like I had done something wrong or had not tried hard enough when nothing could be further from the truth.

If she is out of ideas, there are still so many things that can be tried and each one of us is completely unique in this illness (which I did not realize even one year ago). I now know that this illness (for me) has a huge autoimmune component which has helped me to focus on specific treatments to try in the future. Can you get another opinion or do you have to stick with this doctor even though she is out of ideas?

 

[jlynx]

@jlynx I wanted to clarify and agree that no doctor is perfect and I hope you knew my comments were directed at her and not at you! I didn't mean them at all to be discouraging vs. that I just don't believe her when she says that you are the only patient that has not been helped in two years. This comment (for me) would be very unhelpful and make me feel like I had done something wrong or had not tried hard enough when nothing could be further from the truth.

If she is out of ideas, there are still so many things that can be tried and each one of us is completely unique in this illness (which I did not realize even one year ago). I now know that this illness (for me) has a huge autoimmune component which has helped me to focus on specific treatments to try in the future. Can you get another opinion or do you have to stick with this doctor even though she is out of ideas?

Oh no I'm sorry, I meant her comments were discouraging! Sorry for the confusion, I'm bad at articulating sometimes. I almost started crying from frustration after she said that but thankfully I held it together.

Even though there are some things I don't like about her I think I will stick with her. She is the second doctor I've seen from the same clinic and has been more proactive than the first with trying different things and what I think may help, and is open to suggestions. Plus I am super lucky because it is under half and hour away.

 

[TigerLilea]

@jlynx I have had CFS for almost 26 years now (longer than you've been alive) and I have never had any treatment work. Medical science does not know yet what ME/CFS is, and there are no known treatments. I seriously doubt that you are the only patient who has never shown any improvement. I would guess that most of the CFS patients have not shown any improvement.

 

[jlynx]

Cortisol blood tests are reliable for ruling out adrenal insufficiency, provided the blood draw is done between 7 and 9 a.m. Saliva taken at the same time would mirror blood results.
Midnight salivary cortisol is useful for ruling out Cushing's syndrome (elevated cortisol) and other instances of elevated night time cortisol.
Saliva samples taken at four times during the day can be useful if you can find someone to interpret the pattern you get.


Were you allowed to sit quietly for five minutes prior to having your blood pressure taken? Not allowing enough time to sit still can give a falsely elevated blood pressure and pulse. Are you taking any supplements or medications that could increase your blood pressure?

I'll have to go along with everyone else regarding the low-grade fever. I lived with it for years and then it went away. It's just one of those symptoms that shows up even though you don't have a cold or flu.

It may have been a little under five minutes, it was a short wait. But other times it's definitely been longer than that.

 

[Gingergrrl]

Oh no I'm sorry, I meant her comments were discouraging! Sorry for the confusion, I'm bad at articulating sometimes. I almost started crying from frustration after she said that but thankfully I held it together.

I re-read it and thought that's what you meant but it is often so hard to know for sure! Am relieved that you knew what I was trying to say and you are not bad at articulating at all! I've had a few situations at doctors offices (earlier this year) where I was in tears, I was so upset by the doctor including one who actually yelled at me and my husband and said I was wasting his time and did not want to get better. Luckily I did not continue with any of those doctors and my current doctors are all very kind, helpful and trying their best. But I totally relate to the frustration of it all and good for you for holding it together.

Even though there are some things I don't like about her I think I will stick with her. She is the second doctor I've seen from the same clinic and has been more proactive than the first with trying different things and what I think may help, and is open to suggestions. Plus I am super lucky because it is under half and hour away.

If you feel she is helpful overall and is open to you trying new treatments (plus close by) then it might be worth sticking it out like you said. Just know that you are absolutely NOT the only person who has not gotten better in two years and I found that statement absurd and almost laughable! (for her, not you).

 

[jlynx]

@jlynx I have had CFS for almost 26 years now (longer than you've been alive) and I have never had any treatment work. Medical science does not know yet what ME/CFS is, and there are no known treatments. I seriously doubt that you are the only patient who has never shown any improvement. I would guess that most of the CFS patients have not shown any improvement.

You're right, and I've accepted that there's no cure (yet) and no one solution that will bring me back to 100%. All I'm looking for at this point is something to help even the tiniest amount with any symptom. I think that's possible. But I don't respond to anything. And if I do, any improvements are temporary, lasting either just a couple days, or up to one month at one point.

 

[jlynx]

I re-read it and thought that's what you meant but it is often so hard to know for sure! Am relieved that you knew what I was trying to say and you are not bad at articulating at all! I've had a few situations at doctors offices (earlier this year) where I was in tears, I was so upset by the doctor including one who actually yelled at me and my husband and said I was wasting his time and did not want to get better. Luckily I did not continue with any of those doctors and my current doctors are all very kind, helpful and trying their best. But I totally relate to the frustration of it all and good for you for holding it together.



If you feel she is helpful overall and is open to you trying new treatments (plus close by) then it might be worth sticking it out like you said. Just know that you are absolutely NOT the only person who has not gotten better in two years and I found that statement absurd and almost laughable! (for her, not you).

Wow I am so sorry to hear that. I had a really bad experience where I was not able to hold it back after a doctor completely spoke down to me and said I was doing everything wrong pretty much and the doctor that was helping me was scamming me.

Some of these doctors are unbelievable. It's also why I'm kind of too scared to try seeing someone else!

 

[Gingergrrl]

Wow I am so sorry to hear that. I had a really bad experience where I was not able to hold it back after a doctor completely spoke down to me and said I was doing everything wrong pretty much and the doctor that was helping me was scamming me. Some of these doctors are unbelievable. It's also why I'm kind of too scared to try seeing someone else!

It's really true and I had three bad experiences back to back and was so discouraged at that point but somehow just kept pressing forward. My main doctor and mast cell doctor are both amazing and it was the process of trying to find a neurologist that was the most difficult but the third attempt was the charm. Am still a bit traumatized by what one of the Neuro's did but have just forced myself to put it in the past. It makes sense to give this doctor another chance but if it really reaches the point that she is not helping you or you leave every appt close to tears, I would look at other options.

 

[taniaaust1]

I find that incredibly hard to believe and if she (whoever she is!) has cured all of her other patients in less than two years, we would have heard about her by now. .

the dr said her patients all had "some improvement" though could mean a 5-10% hardly noticable improvement.

That's a big difference to a dr saying that all the other patients have been cured which would be unbelievable. I personally think that an extremely good dr who is doing a very good job at ruling the other often missed stuff out and trialing a lot of different things could well have her patients at least improving by a little bit (esp if she gets them all so they arent over doing things with getting them the home help they may need or whatever).

 

[taniaaust1]

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".

Its good she's honest with you with letting you know she's out of ideas.

One more thing- my pulse and blood pressure have been very high the last couple visits. Also the last two visits I've had a low grade fever. (I have not had a cold or 'regular' sickness.)

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).

 

[Mary]

RE the chiropractor, I am seeing one for neck pain and scoliosis, but I don't think they do muscle testing. Adjustments have improved my posture but have done nothing for the CFS.

Adjustments have never done anything for me either in terms of ME/CFS though they have helped me with back problems. If you wanted to try muscle testing as a way to get more information, obviously you would have to find a chiropractor who does this - many do, many don't. The Standard Process website has a feature which enables you to search for practitioners who use their products, who very often are chiropractors who use muscle testing. Standard Process makes very good nutritional products.

 

[Gingergrrl]

the dr said her patients all had "some improvement" though could mean a 5-10% hardly noticable improvement.

That's a big difference to a dr saying that all the other patients have been cured which would be unbelievable. I personally think that an extremely good dr who is doing a very good job at ruling the other often missed stuff out and trialing a lot of different things could well have her patients at least improving by a little bit (esp if she gets them all so they arent over doing things with getting them the home help they may need or whatever).

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)!