Unrelenting malaise and POTS

[Castorp]

Hello,

I hope this is the right place to post my question. I fell ill in March 2020 with what seemed to be a virus and I have not recovered. Taking into account the date of the onset, long covid was initially considered. Nevertheless, all the covid tests (PCRs and antibodies) came back negative. After six months, ME/CFS was also a pontential diagnosis. However, although I fulfil several of the ME/CFS criteria, I do not have PEM, which appears to be the key symptom in ME/CFS. Finally, I have been diagnosed with autoimmune POTS, after tesing positive for alpha and beta adrenergic autoantibodies.

Nevertheless, I feel like something is still being missed. I have tachycardia when standing, but my worst symptom is a non-stop profound malaise 24/7. I have experienced this unrelenting malaise since the beginning of my illness in March 2020, even while resting and my heart rate and blood pressure are okay.
I try to describe this systemic malaise to my doctors as feeling like I have a severe flu every single day during the last 18 months (although without respiratory symptoms). There is also a feeling of fever, although my temperature is usually below 37°C (98.6°F). This malaise is really incapacitating and never goes away. I have attempted numerous treatments (beta-blockers, ivabradine, IVIG, plasmapheresis, corticosteroids,...), but nobody seems to know what to do to reduce it.

I wonder if this daily malaise is actually a dysautonomia symptom. Does anyone else experience a similar feeling?

Thank you for your help.

 

[Martin aka paused||M.E.]

Hello,

I hope this is the right place to post my question. I fell ill in March 2020 with what seemed to be a virus and I have not recovered. Taking into account the date of the onset, long covid was initially considered. Nevertheless, all the covid tests (PCRs and antibodies) came back negative. After six months, ME/CFS was also a pontential diagnosis. However, although I fulfil several of the ME/CFS criteria, I do not have PEM, which appears to be the key symptom in ME/CFS. Finally, I have been diagnosed with autoimmune POTS, after tesing positive for alpha and beta adrenergic autoantibodies.

Nevertheless, I feel like something is still being missed. I have tachycardia when standing, but my worst symptom is a non-stop profound malaise 24/7. I have experienced this unrelenting malaise since the beginning of my illness in March 2020, even while resting and my heart rate and blood pressure are okay.
I try to describe this systemic malaise to my doctors as feeling like I have a severe flu every single day during the last 18 months (although without respiratory symptoms). There is also a feeling of fever, although my temperature is usually below 37°C (98.6°F). This malaise is really incapacitating and never goes away. I have attempted numerous treatments (beta-blockers, ivabradine, IVIG, plasmapheresis, corticosteroids,...), but nobody seems to know what to do to reduce it.

I wonder if this daily malaise is actually a dysautonomia symptom. Does anyone else experience a similar feeling?

Thank you for your help.

Hey!
I'm sorry that you're suffering. I had this before I became moderate in 2017. Constant feeling of having the flu/malaise. Back then, my HR and BP were completely normal. I also did not have (noticeable) PEM; or let's say I thought I did not. But when my psoriasis broke out in 2016 I didn't drink nor partying every weekend and relaxed more often and the feeling of flu and fever disappeared - only returned when I was drinking heavily and partying the whole night.

The tachycardia while standing might be an early sign for POTS. If you haven't, I highly recommend a hospital stay to rule out neurological and other diseases.

Then, mild ME might be still a correct diagnosis

 

[Haley]

Hi @Castorp,

Sorry you are feeling like that. I don't know a lot about autoimmune POTS (I only have the garden variety type), but I do find that when I'm off my POTS meds the fatigue and malaise is worse than usual. Ive tried a few meds and some are better at relieving the fatigue than others.

As Martin mentioned you may not know if you are in PEM or not, especially if you haven't changed your daily activities. I've found the only real way to work out if it's PEM or not is to significantly reduce your activity levels and sees what happens.

Have you had a work up for other autoimmune conditions? Where there is one, there is usually more...

 

[Castorp]

@Martin aka paused||M.E. and @Haley, thank you for your suggestions.
It is difficult to reduce my activity level because since the beginning of the illness, 18 months ago, I am unable to leave my house and spend most of the day in bed. Nevertheless, resting has no effect on my malaise, which never goes away, whatever I do.

Currently, my only diagnosis is autoimmune POTS. However, in addition to the adrenergic antibodies, I also have a positive ANA result, although my doctors have ruled out so far that I have another autoimmune condition.

 

[5vforest]

resting has no effect on my malaise, which never goes away, whatever I do.

I also have this experience.

It is not common, but I think it's important to understand that it's still possible.

 

[Violeta]

@Martin aka paused||M.E. and @Haley, thank you for your suggestions.
It is difficult to reduce my activity level because since the beginning of the illness, 18 months ago, I am unable to leave my house and spend most of the day in bed. Nevertheless, resting has no effect on my malaise, which never goes away, whatever I do.

Currently, my only diagnosis is autoimmune POTS. However, in addition to the adrenergic antibodies, I also have a positive ANA result, although my doctors have ruled out so far that I have another autoimmune condition.

@Castorp Did your doctor tell you which adrenergic antibody showed up? Or was it both? Do you tend toward high or low blood pressure?

Do you have any joint or tendon issues? Would you mind describing your malaise? If you don't want to get into that, it's okay, I am just trying to figure out something. Thank you, and I hope you find a way to get up and moving.

Can you get tested for other pathogens? The only thing I can think of about the overall malaise is that there is something bothering your vagus nerve. The vagus nerve affects so many things, can make you feel bad all over. It's very difficult for the body to clear viruses from nerve tissue.

 

[Rufous McKinney]

Nevertheless, I feel like something is still being missed. I have tachycardia when standing, but my worst symptom is a non-stop profound malaise 24/7. I have experienced this unrelenting malaise since the beginning of my illness in March 2020, even while resting and my heart rate and blood pressure are okay.

Sounds familiar.

I did not get classic PEM during my "mild" eras. I'd have "episodes" of maybe i have MONO again.

Malaise is daily, and continuous 24/7 in my case. PEM is just all of it more intensely worse, with alot of poisoning and everything unravels further.

there is a daily symptom cycle, and it can be less intense sometimes, and more other times. But in my case it never goes away.

 

[Castorp]

@Violeta, thanks for your interest.

@Castorp Did your doctor tell you which adrenergic antibody showed up? Or was it both? Do you tend toward high or low blood pressure?

I have been testing positive for alpha1, beta1 and beta2 adrenergic autoantibodies. My doctor aims to repeat this test again, including this time all the autoantibodies available in the CellTrend panel.
I do not have orthostatic hypotension. In fact, when standing I tend to have diastolic hypertension.

@Castorp Do you have any joint or tendon issues? Would you mind describing your malaise? If you don't want to get into that, it's okay, I am just trying to figure out something. Thank you, and I hope you find a way to get up and moving.

Fortunately, I do not have any joint or tendon issues. It is really difficult describe my malaise. I tell my doctors that I feel like if I had a severe flu (but without any respiratory symptom) or if I had been injected with a toxic substance. It is different from any feeling experienced by a healthy person in her normal life. I would not say in any case that I feel tired, fatigued or with low energy. My malaise is profound and incapacitating and never goes away.

@Castorp Can you get tested for other pathogens? The only thing I can think of about the overall malaise is that there is something bothering your vagus nerve. The vagus nerve affects so many things, can make you feel bad all over. It's very difficult for the body to clear viruses from nerve tissue.

During the first months of my illness, I was tested for various virus and bacterial infections (Covid, Epstein-Barr, cytomegalovirus, parvovirus, Lyme,..), but all the results were negative. Nevertheless, despite this fact, the sudden onset of my symptoms seems to suggest that a virus may be involved.
I find the vagus nerve infection hypothesis very interesting. However, I assume that evidence of viral infection in the vagus nerve is very difficult to obtain. Do you know if there are tests that can provide (indirect) information about this issue?

 

[Violeta]

You had a good doctor that he tested you for all those infections.

Hypertension is yes, what seems to be involved with those antibodies. I hadn't realized POTS with high blood pressure was so common. I don't know if it will give you any clues, but Cort Johnson has an article about that. I'll try to find it. Maybe you already know about most of the stuff in this article.

https://www.healthrising.org/blog/2021/07/29/long-covid-chronic-fatigue-syndrome-hypothesis-merging/

Do you have some other blood test numbers such as white blood cell count, things like that?

Van Elzakker is where the vagus nerve infection originated. I haven't seen any way to test or heal provided yet. Maybe someone else knows more about this. Although now I am wondering if the vagus nerve involvement would tend towards producing orthostatic hypotension and the antibody involvement produces hypertension. I am looking for the answer to that, maybe someone else knows.

https://pubmed.ncbi.nlm.nih.gov/23790471/#:~:text=The vagus nerve infection hypothesis,with any virus or bacteria.

 

[Violeta]

For now, curious about the differences is between the causes of hypo and hypertension, I will link this informative site about various herbals and their opposing effect on the endocrine system.

Being of low blood pressure, low hypothalamus output (the biggest clue for me being vasopressin deficiency), the category Chinese herbs that can promote or activate this functional axis include: has been helpful.

http://www.shen-nong.com/eng/exam/specialties_menopause_herbs.html

 

[Rufous McKinney]

Chinese herbs that can promote or activate this functional axis include: has been helpful.

wow

thats a mind blowing Web Site....Wow

Been doing CTM for most of my life.

This site seems to be coming out of Hong Kong

i see an expert herbalist in California, very hard to find.

Thanks for posting....

 

[Rufous McKinney]

I hadn't realized POTS with high blood pressure was so common

somehow I'm a high blood presssure version with some POTS...(not properly diagnosed).

I"d like to better understand it.

 

[Violeta]

somehow I'm a high blood presssure version with some POTS...(not properly diagnosed).

I"d like to better understand it.

I don't understand it, either, but in that article above, Cort talks about the alpha and beta adrenergic antibodies causing hypertension. I am more concerned about hypotension, so I guess I don't have those antibodies. I have a friend with polymyalgia rheumatica, which she came down with after a virus or flu that also has low blood pressure (she didn't get tested, may have been COVID), who tested negative for those antibodies.

I don't know, at least some of my confusion is getting cleared up. What to do, though, is still a black hole.

 

[Violeta]

wow

thats a mind blowing Web Site....Wow

Been doing CTM for most of my life.

This site seems to be coming out of Hong Kong

i see an expert herbalist in California, very hard to find.

Thanks for posting....

It is so good. I wish they would update it or expand on it. I have wondered about chaga mushroom.

I know that reishi helps me and that cordyceps didn't, so I try to stick with the things in that part of the list that I mentioned.

Since you tend towards high blood pressure, I wonder if you would need herbs from the other group. I don't know if high/low blood pressure is a dividing point, though.

 

[Rufous McKinney]

Since you tend towards high blood pressure, I wonder if you would need herbs from the other group. I don't know if high/low blood pressure is a dividing point, though.

I'm on a break for a while on herbs. I need to regroup. COVID, etc.

I've never discussed my vagus nerve with my CTM person. so thats talking in western medicine terms.

I need to read Cort's thing and ponder more. Genetically, I have the list. (blood sugar, cardiac,bad cholesterol) thanks Parents.

I sit in a chair alot. I got much worse POTS during an extended PEM event, when I got much much worse over 3 months, not home. So I got bad tachycardia during all that. Lots of neurological issues.

Its not as bad, having spent the last year at home not doing hardly anything whatsoever.

 

[Castorp]

@Violeta thanks for posting these links. I find them very interesting.

As far as I am aware, hypotension is usual in neuropathic POTS, which is the most common form of POTS. On the contrary, in hyperadrenergic POTS, there is often high BP when standing.

 

[Violeta]

@Violeta thanks for posting these links. I find them very interesting.

As far as I am aware, hypotension is usual in neuropathic POTS, which is the most common form of POTS. On the contrary, in hyperadrenergic POTS, there is often high BP when standing.

This is interesting, I looked up neuropathic POTS and found this:
How do you treat neuropathic POTS?

Treatment of Neuropathic Pots: Midodrine and Pyridostigmine. In neuropathic POTS, impaired peripheral vasoconstriction caused by adrenergic denervation can lead to peripheral venous pooling (64). Midodrine, an alpha1-adrenergic agonist, can effectively constrict peripheral vessels, and increase venous return.

I don't take meds, but the interesting part is that neuropathic POTS is helped by alpha 1-adrenergic agonists while hyperadrenergic POTS is helped by alpha and beta blockers.

 

[Violeta]

This study was posted by Dysautonomia Intl. on Twitter.

And I found this: Muscarinic receptors respond to the binding of ACH, and may have an excitatory or inhibitory effect. Adrenergic receptors are located on most sympathetic effector cells. Adrenergic receptors respond to the binding of norepinephrine (NE), which may have an excitatory or inhibitory effect.

"The adrenergic antibodies have been found in autoimmune orthostatic hypotension patients too."
We have identified the presence of autoantibodies to β2-adrenergic and/or M3 muscarinic receptors by ELISA in 75% (15 of 20) of patients with significant orthostatic hypotension.

I wonder what the difference it between the two?

https://pubmed.ncbi.nlm.nih.gov/22215709/