Respitory depression/cardiac failure-any ideas?

[Sidny]

@Sidny Just to cover all the bases have you considered asking a cardiologist to do an echo to measure your cardiac output?
The home sleep tests (ordered by a doctor, they are paid for by insurance) have become very sophisticated and would tell you whether you are having any oxygen problems while you sleep. My cardiologist ordered this test for me. It is much more patient-friendly than the overnight tests done in hospital sleep labs.

@Sushi thanks a lot for the feedback. Of all the docs I’ve seen thus far my cardiologist seems like the most open minded. I’ve had 2 ekgs that we’re both abnormal, one from my gp and the other the cardiologist did but he did not seem concerned. I will follow up about an echo as I also have chest pain. Good to know the cardiologist can order a sleep study. I hope this is within the realm of prodecures he orders.

 

[Gingergrrl]

Of all the docs I’ve seen thus far my cardiologist seems like the most open minded.

I was curious who your cardio is since we live in the same city? (I will PM you and don't post it publicly).

I’ve had 2 ekgs that we’re both abnormal, one from my gp and the other the cardiologist did but he did not seem concerned.

Do you know what the abnormality was on the two EKG's? Do you have POTS?

I will follow up about an echo as I also have chest pain.

I think you should definitely get an Echo if you have not had one.

Good to know the cardiologist can order a sleep study. I hope this is within the realm of prodecures he orders.

The Cardio that I had back in 2013 (when this all started) was completely useless but even she was able to order an overnight sleep study for me so I know it is possible. Once they ruled out sleep apnea they were not interested in much else and it was beyond her ability to figure out that I had severe POTS. I ultimately found a much better Cardio who specializes in autonomic issues although truthfully, in the end, he did not help me (although he was a nice person and did his best). I do not see any Cardio at present and my main doctor prescribes my POTS meds now.

 

[Sidny]

I was curious who your cardio is since we live in the same city? (I will PM you and don't post it publicly).



Do you know what the abnormality was on the two EKG's? Do you have POTS?


I think you should definitely get an Echo if you have not had one.



The Cardio that I had back in 2013 (when this all started) was completely useless but even she was able to order an overnight sleep study for me so I know it is possible. Once they ruled out sleep apnea they were not interested in much else and it was beyond her ability to figure out that I had severe POTS. I ultimately found a much better Cardio who specializes in autonomic issues although truthfully, in the end, he did not help me (although he was a nice person and did his best). I do not see any Cardio at present and my main doctor prescribes my POTS meds now.

He said that the time between the beats was about a 10th slower than the time between normal heartbeats. He just wasn’t concerned.

I will be asking for an echo next visit. I’m not sure if I have pots but it sure felt like it the first 3 months or so of being sick. Is that dizziness upon standing? I almost always feel better lying down.

I pm’d you seems like the better cardio you found was like mine, nice but not really helpful unfortunately.

 

[kangaSue]

Well @kangaSue I didnt understand a lot of your post. But I do have a lot of intestinal issues but no weight loss, so it seems like the celiac artery compression doesn't apply.

No, that doesn't rule MALS out yet. Typical presentation is seen with weight loss too but I know of a number of overweight people who have been diagnosed with MALS too, let alone all the "normals."

 

[Pink]

I've had abdominal ultrasounds and endoscopy but it never came up.

 

[Gingergrrl]

He said that the time between the beats was about a 10th slower than the time between normal heartbeats. He just wasn’t concerned.

I'm not actually sure what that means and hoping someone else might know? I had an irregularity on an EKG during a treadmill stress test in Sept 2014 that was completely dismissed as "normal" and then when I got a copy of the report, my former Cardio said it was an inaccurate reading and still dismissed it. My new Cardio (at that time) was so concerned by the EKG and my profound shortness of breath that he put me in the hospital for tests. Ultimately he did not help me but he did try.

I’m not sure if I have pots but it sure felt like it the first 3 months or so of being sick. Is that dizziness upon standing? I almost always feel better lying down.

Many people with POTS have dizziness although I almost never did. I had tachycardia, hypotension, shortness of breath, and chest pain upon standing/walking. It doesn't happen any more but I remember it very well b/c it plagued me for four years.

I pm’d you seems like the better cardio you found was like mine, nice but not really helpful unfortunately.

I will reply to PM and I am not familiar with your Cardio and have never seen him.

 

[kangaSue]

In this article it’s indicated that ivig maybe be helpful for autonomic neuropathy although I’m not sure if that’s what I have and what particular subset of it.

Autonomic Autoimmune Neuropathy is an outdated term that is now called Autoimmune Autonomic Ganglionopathy (AAG). What I understand from reading about this is that the longer it goes untreated, the less your chances of reversing the nerve damage that goes with it.

I don't know if that applies equally to other autoimmune causes of neuropathy. Both Lyme Disease and enterovirus can cause severe GI dysmotility so you have these other considerations to rule out too.

I really need to push my docs for these autoantibody tests or just save myself the heartache and ideally book an appointment at the center for complex diseases.

I had some blood sent to the U.K. to screen for this (AAG) but was negative where the ganglionic acetylcholine receptor (gAChR) antibody was concerned. A negative result for this antibody does occur in up to 50% of cases of AAG though so it just clouds the whole picture in having to rely on doctors to make a judgement call on it based on clinical symptoms alone. Insurance companies will then try to deny you access to the likes of IVIG etc.

Mayo has a couple of panels for testing antibodies associated with AAG, DYS1 or GID1. Athena Diagnostics can test for gAChR ab (test code 428), as can Dr Vernino's lab at UT Southwestern and I think the latter two both accept blood draws to be sent to them for testing.

I was leaning toward AN for a while but am not sure how to really move forward with testing or treatments or if there even are any.

This is usually where a Neurologist is involved to refer you for an autonomic function test panel. I had 5 tests done, a Tilt Table Test, Valsalva Maneuver Test, Heart Rate Variabilty to Deep Breathing Test and the two sweat function tests of QSART and Thermoregulatory Sweat Test.

You can do a basic autonomic function yourself in doing the same test that a doctor can do at their office, "Poor Man's Tilt Table Test."
http://www.oiresource.com/oitest.htm

 

[kangaSue]

I've had abdominal ultrasounds and endoscopy but it never came up.

Was it just a standard gray scale ultrasound you've had done though? What I'm talking about is a blood flow issue and it needs to be a Doppler Ultrasound to see the blood flow course in the mesentery arteries. The sonographer also needs to have a few clues about what they are doing where MALS is concerned as flow velocities need to be measured doing deep inhalation and exhalation only while supine (laying down) and without your head raised by a pillow or the back of the knees supported.

 

[Gingergrrl]

as can Dr Vernino's lab at UT Southwestern and I think the latter two both accept blood draws to be sent to them for testing.

That is interesting and I did not know that you could send a blood sample to Dr. Vernino's lab at UT Southwestern if you were not his patient there. I think he can test for some pretty obscure autoantibodies. I would love to consult with him but he is too far away!

 

[kangaSue]

I would love to consult with him but he is too far away!

Yeah, he's quite a commute for me too!

 

[Sidny]

@Sidny - respiratory depression and low cardiac output can be signs of hypophosphatemia (see here), as well as fatigue, weakness, etc. I've experienced this and it makes me very tired. There's a subgroup of ME/CFS patients who have phosphate diabetes (unrelated to "regular" diabetes). I don't know if I have this, but I do have ongoing problems with low phosphorous and very often have to take a supplement. Low phosphorous also can be caused by refeeding syndrome (see https://en.wikipedia.org/wiki/Refeeding_syndrome). When I first started taking extra thiamine, it initially boosted my energy very nicely and then a day or 2 later I got hit with severe fatigue, due to hypophosphatemia.

Thanks @Mary defintely another thing to consider, are there any tests for this?

 

[Mary]

Thanks @Mary defintely another thing to consider, are there any tests for this?

I'm sure there are, but I have not looked into it. I would bet that the vast majority of doctors know nothing about this. Also, I don't know if it's similar to low potassium and ME/CFS. It is not uncommon for persons with ME/CFS to have low cellular potassium despite normal blood work. This post explains why.

So I don't know if routine tests for phosphate would show phosphate diabetes.

When first I suspected that my phosphorous had tanked when the severe fatigue hit after starting thiamine, I looked up sources of phosphorous and found that dairy was high. So I drank several glasses of kefir and a few hours later the fatigue began to abate. I ended up getting a monosodium phosphate supplement from Swanson Vitamins which I take periodically in small amounts. I don't have a good doctor unfortunately, hope to find one one of these day.

Testing of course would be ideal, but in the meanwhile you might try something like that, find something high in phosphorous and see if it helps.

 

[Sidny]

@kangaSue thank you for all the ideas. I will ask my nuerologist for an autonomic function panel. Would being positive for AN be enough to qualify for IvIG? Also it seems pretty unfortunate with so many overt clinical symptoms of AAG that it takes a positive autoantibody test to qualify for ivig.


Although I do have certain viruses to consider not to mention a Lyme infection I couldn't be more certain of but tested negative on through quest.

The concept of IVIG kind of confuses me though as my understanding of it is that its an immune booster. Wouldn't that not be want you'd want in a situation of autoimmunity? Unless autoimmunity is actually the body's attack on the pathogens themselves (and not on self) like I've read theories propose in some literature. I guess to me that would then explain more logically how IvIG works.

 

[Moof]

respiratory depression and low cardiac output can be signs of hypophosphatemia (see [URL='https://en.wikipedia.org/wiki/Hypophosphatemia'][B]here[/B][/URL]), as well as fatigue, weakness, etc. I've experienced this and it makes me very tired. There's a subgroup of ME/CFS patients who have [URL='https://www.ncbi.nlm.nih.gov/pubmed/9683977'][B]phosphate diabetes [/B][/URL](unrelated to "regular" diabetes). I don't know if I have this, but I do have ongoing problems with low phosphorous and very often have to take a supplement.

Just to say thank you for posting this, [USER=74]@Mary (but sorry to take the focus of the thread slightly off-grid).

I read the information in your links, and the information about expanded pulp chambers in teeth made me wonder if hypophosphataemia could be why this happened to me. It started in my 20s, after several years of ME, and a whole series of dentists were baffled by it – the pulp chambers became so enlarged that it eventually undermined the structural integrity of some of my teeth, but no-one could come up with a reason.

In truth, it's probably just a coincidence, but it might still be worth me trying the supplement you mentioned. (Just in case it's expensive where you live too, I found that it's less than a quarter of the price if you buy it as a food additive from sites that supply ingredients to people who make their own toothpaste etc!)[/user]

 

[kangaSue]

Would being positive for AN be enough to qualify for IVIG?

AN can be idiopathic too from vitamin, mineral or other nutritional deficiencies so you need to have an antibody to show it has an autoimmune basis, AAG is basically autoimune AN.

Also it seems pretty unfortunate with so many overt clinical symptoms of AAG that it takes a positive autoantibody test to qualify for ivig.

That's just the loophole that Insurance companies exploit. You can access it in some countries if you're willing or able to cover the costs but this is pretty significant. That's not an option here in Australia as far as I am aware.

The concept of IVIG kind of confuses me though as my understanding of it is that its an immune booster.

IgG makes up a large part of our humoral immunity defences. Yes, IVIG boosts this ability to fight off offenders but it doesn't stop other pathogenic antibodies from being produced so it's only a means of control in most cases, so not a cure.