Desperate to find answers for my breathing problems and wheezing lasting almost an entire year non stop

[pubh12]

I apologize for how long this is probably going to be. I’m so desperate for ideas I just don’t want to leave anything out.

So I’ve been having terrible breathing problems for since last September. It started out only when laying down but by mid November it had evolved to 24/7 and I have not gotten a moment of clear breathing since. It’s hard to inhale and exhale - like the airways are constricted. I get a wheeze one exhale and very seldom inhale but the wheeze sounds like it’s coming from the upper airway. Not sure though. Often feels like I csnt get a deep satisfying oxygenated breath as well. I do want to stress this isn’t episodic but 24/7. I’m only 29 and a non smoker. I’ve been to the ER so many times.
I have had multiple CT scans and X-rays that cannot find the problem. Echo good no Pulmonary hypertension Bloodwork always normal. I’ve tried all the asthma meds, allergy meds , prednisone (which seemed to make me worse) and all of that. Vocal cords seemed fine when checked.

My conditions include things like POTS, MCAS , EDS , I had small PEs about five months into the breathing issues (had multiple clean CTs before they were there and they are gone now) Myesthenia gravis also ruled out.

Here is a list of things I’m considering -

1. Chronic carcinoid or Serotonin syndrome

So I had a very tiny carcinoid in my lung that was found during the bronchoscope . It was removed a couple months ago. Usually if it were carcinoid tumours when you get rid of them the symptoms resolve but mine did not. I had a urine 5-HIAA test that was negative. BUT I have a homozygous mutation on the MAOA rs6323 which is known to drastically lower the enzyme that breaks down serotonin. I have a crazy amount of fasciculations , muscle weakness , excess saliva production. I fell from my muscles being so weak at my pharmacy about a week before my breathing issues turned into a 24/7 thing. I’ve been trying cyproheptadine but I read somewhere on this site (a photo I’ll attatch at the bottom ) of needing upward of 100mg a day fro carxinoid and the most I have taken so far was 50 and I’m hesitant to go higher. I’m not on ssris.


2. Acetylcholine overload ?

So when this all happened I was taking Huperzine A and a quercetin compelx with Ingredients also used to increase acetylcholine. And sometimes even alpha gpc While on these drugs is when the breathing problems started. Very shortly after Huperzine actually maybe a matter of a couple weeks. Some of the symptoms above I mentioned for cholinergic crisis - but especially the muscle paralysis I would wake up with sometimes where it felt as though I’d had a stroke. I’d regain movement after several minutes. The fasciculations could also be explained with this. But I’ve been off that stuff almost a year now and it hasn’t subsided with breathing. Atrovent which is an anticholinergic kind of helps a little but not even close enough for me to function. Can I rule out acetylcholine causing bronchoconstriction if even atrovent doesn’t alleviate it? Inside of my mouth also swelled up on this stuff (buccal mucosa of my cheeks). I’ve only been taking the atrovent a few days so maybe I need more time.

I still get muscle fasciculations and perhaps that’s a sign that either serotonin or acetylcholine is still too high.

3. Cortisol problems

I was on Fludrocortisone as well when this began and ceasing that didn’t help. But man oh man did prednisone make Me worse. When I started out on 60mg I was awake for FOUR days straight with major adrenaline dumps and my body would not let me sleep. I truly thought I’d die at the end of it. It made whatever issue I was having worse. I’ve had clavicle area swelling akin to cushings for years and am wondering if that just put whatever cortisol issues I had into overdrive. Cortisol always normal in urine test, maybe slow COMT and MAOA gene mutations make the results not accurate again ? I know there’s an issue with hormones , especially since I have zero labido for years now and I’m so young

4. Relapsing Polychondritis.

This one really scares me and I think the possibilty at this point is very real. Tracheobroncheomalacia is something I’ve considered because my ears will turn red and burn and wake me up with pain. My nose cartlidge is damaged and droops down to either side I lay on. Switching sides and positions alters the severity of the breathing. I had a month long pain right down my sternum a week before the breathing issues started. I started the Huperzine around the time this pain subsided. I’ve had a bronchoscope that said it was fine but I’m still not convinced they did it properly. Rheum is unconvinced this is my problem. Also no chronic cough.

5. Airway remodelling or fibrosis not being picked up on scans ? I have some kind of autoimmune issue. I know I do. Tested positive for Sjogrens but they won’t diagnose it since my “eyes aren’t dry enough”. My CRP is always elevated at 4.6. Could I just have damaged my lungs with constant inflammation? If it is fibrosis or airway remodeling how do I reverse it if I can?

6. All this BS started right after an asymptomatic covid case. I hadn’t gotten sick in years either due to an autoimmune system in overdrive or just not working. But I never get acutely sick. Could covid have damaged phrenic nerve or something? Permanent airway damage even without bad lung infection?

7. I was also taking high does of magnesium at the time around 1000mg. It was pretty overkill. A calcium issues? Blood calcium is always fine though.

8. Iron issues?

My iron serum was 12 nmol, iron sat was low at 17% and ferritin was 144 nmol but I have raised CRP so maybe even that’s low. But I don’t know if low iron would cause wheezing.

9. An interesting one - Methemoglobinhemia? Someone taking my blood commented how brownish black it looked. It’s also very slow to come out and I’ve alreayd clotted. I’m taking vitamin c around 3 grams a day to see if it can reverse it but so far not much luck.

I’m terrified how long this issue has persisted without any help. Doctors don’t know what to do and aren’t a great help. I’m depressed I may have done this to myself with all that acetylcholine stuff. I don’t think I can handle this being permanent.

I’m just looking for out of the box ideas about this and will not assume it’s medical advice , but at the same time id love to hear your opinions on what I could do next.

 

[Peatful]

6. All this BS started right after an asymptomatic covid case. I hadn’t gotten sick in years either due to an autoimmune system in overdrive or just not working. But I never get acutely sick. Could covid have damaged phrenic nerve or something? Permanent airway damage even without bad lung infection?

How many times do you think you were swabbed nasally for c19 testing?


You are in Canada
How many vaxxs received?

 

[dervmai]

Hmmm, not sure... Upper airway issues could be caused by nasal congestion. I'm not sure what you are referring to when you say you hear wheezing noises. Is it like when your nose is clogged and it makes a wheezing sound? Or do you think it is physical structure problem with your airways? If CT scans aren't showing anything abnormal... and you don't think it is an allergy issue...it could be due to your actual structure of your airways. Is your jaw and maxilla recessed? If it is that might be the cause. I'm not sure if the structure of the face can regress in just a year though so I might be way off, also I don't know if this is what you mean by airway remodeling.... if it is, ignore my comment, sorry I couldn't be of much help.

 

[pubh12]

Hmmm, not sure... Upper airway issues could be caused by nasal congestion. I'm not sure what you are referring to when you say you hear wheezing noises. Is it like when your nose is clogged and it makes a wheezing sound? Or do you think it is physical structure problem with your airways? If CT scans aren't showing anything abnormal... and you don't think it is an allergy issue...it could be due to your actual structure of your airways. Is your jaw and maxilla recessed? If it is that might be the cause. I'm not sure if the structure of the face can regress in just a year though so I might be way off, also I don't know if this is what you mean by airway remodeling.... if it is, ignore my comment, sorry I couldn't be of much help.

It’s a whistle sound on exhale. Only out the mouth no sound when I breath out my nose weirdly enough. It’s not nasal congestion as the breathing issues are with présent nose and mouth breathing.

When I mention airway remodeling I’m more so referring to thickening of the smaller bronchi and alveoli etc. Maybe it’s the same thing as fibrosis I’m not entirely sure. But It can happen in autoimmune disease.

I have a hypermobile jaw, but even if I try to manipulate it up and out from the airway there’s no change. I feel like it’s either a lung problem with bronchoconstriction or thickening or something like that, or floppy airway. But if it’s bronchoconstriction that doesn’t respond to inhalers thay could maybe point to serotonin induced bronchoconstriction

 

[pubh12]

How many times do you think you were swabbed nasally for c19 testing?


You are in Canada
How many vaxxs received?

At that time? Once I believe ? I probably didn’t mention this in the OP, but this isn’t a nasal issue anyway. I have had nadal congestion my whole life and have always been a mouth breather. I just can’t breath through my mouth anymore either.

2 vaxes, and I’ve considered perhaps it’s some vax injury.

 

[TheSir]

I'm having issues of similar nature:

- mild wheezing in lying position.
- unable to take deep breaths at times.
- muscle twitching/fasciculations. This and the breathing issue are made worse by physical activity, stress and certain stimulating nutrients such as iodine, selenium, D and B vitamins.
- consistently elevated ferritin (~200). Other iron markers are fine.
- inability to be physically active without feeling like i'm dying and dumping adrenal & cortisol.
- low cellular levels of all electrolytes. Very low cellular level of potassium. Elevated or average serum levels of electrolytes.
- elevated serum b12 and folate

All symptoms began after covid in the spring of 2022 and worsened after shingles in the fall of 2022. No vaccines, one nasal swab quick test. It's been hard to understand what's going on.

 

[Nick]

For me, too much EMF exposure, usually over multiple days, often causes susceptibility to wheezing, shortness of breath and intolerance of exertion. Most pro-metabolic things seem to make this sensitivity worse for me such as vitamin K, vitamin E, thyroid and progesterone. Non-native EMF can cause a hypoxia-like effect at the cellular level by interfering with the electron transport chain (hence increasing metabolism in the virtual abscense of oxygen doesn't help) and can also directly irritate the respiratory tract. For me this got much worse with the changes in the wireless infrastrucure (in my area) in 2021-2022. Thiamine and radical EMF reduction are the only things that have helped my breathing.

You might consider a trial of several days minimizing all EMF as low as you can to see if this affects your breathing. Unfortunately this can be hard to do thoroughly without multiple kinds of meters since source sources can be unknown to you. This is not just cell phones/towers and wifi but also things like radio antennas, electrical wiring, smart meters, motors and more. If you want to try this, this thread my help Nothing in life comes free. Camping may be one way to do a trial but other campsites may bring phones/wifi or the campsite could be near a cell tower.

 

[pubh12]

I'm having issues of similar nature:

- mild wheezing in lying position.
- unable to take deep breaths at times.
- muscle twitching/fasciculations. This and the breathing issue are made worse by physical activity, stress and certain stimulating nutrients such as iodine, selenium, D and B vitamins.
- consistently elevated ferritin (~200). Other iron markers are fine.
- inability to be physically active without feeling like i'm dying and dumping adrenal & cortisol.
- low cellular levels of all electrolytes. Very low cellular level of potassium. Elevated or average serum levels of electrolytes.
- elevated serum b12 and folate

All symptoms began after covid in the spring of 2022 and worsened after shingles in the fall of 2022. No vaccines, one nasal swab quick test. It's been hard to understand what's going on.

It’s a nightmare. How’s your breathing generally at rest ? Still impaired ? If you make any progress be sure to check back in with me , perhaps we’re going through the same thing

 

[TheSir]

It’s a nightmare. How’s your breathing generally at rest ? Still impaired ? If you make any progress be sure to check back in with me , perhaps we’re going through the same thing

When sitting straight or standing it's fine. Though if my air hunger/suffocation flares up then no position will help. Most symptoms have been improving slowly with time, stress avoidance and stress buffers like ca, mg, zinc, glycine and lecithin.

My hair test shows a deficiency of all electrolytes, called four lows, which is the most difficult pattern to fix in hair mineral analysis. That alone can take a couple of years of targeted treatment to reverse, otherwise it can be pretty intractable. A hair test could give some insight into your case too.

 

[youngsinatra]

When sitting straight or standing it's fine. Though if my air hunger/suffocation flares up then no position will help. Most symptoms have been improving slowly with time, stress avoidance and stress buffers like ca, mg, zinc, glycine and lecithin.

My hair test shows a deficiency of all electrolytes, called four lows, which is the most difficult pattern to fix in hair mineral analysis. That alone can take a couple of years of targeted treatment to reverse, otherwise it can be pretty intractable. A hair test could give some insight into your case too.

Have you ever gotten blood tests to investigate the adrenals and potentially adrenal insufficiency? (serum cortisol/DHEA-S, aldosterone..) The adrenals control electrolyte balance.

I also recently posted about adrenal insufficiency causing hypothyroidism. I believe subclinical adrenal insufficiency (not addisons) could cause subclinical hypothyroidism.

 

[TheSir]

Have you ever gotten blood tests to investigate the adrenals and potentially adrenal insufficiency? (serum cortisol/DHEA-S, aldosterone..) The adrenals control electrolyte balance.

I also recently posted about adrenal insufficiency causing hypothyroidism.

Unfortunately no, but four lows is basically a type of advanced adrenal burnout and I fail the pupil dilation test in like 4 seconds, so insufficiency is guaranteed.

In hair K and Na are linked to thyroid and adrenal activity and mine are pretty low as seen in the chart below.



The problem is that normally ca&mg should be above the optimal line, which would allow one to safely supplement with things that increase adrenal and thyroid activity (increasing k&na decreases ca&mg and vice versa). However, attempting to do so in my situation would lead to a negative outcome, since my ca&mg are already low. The body would not permit them to decrease further and thus na&k could not rise either. I would either crash further or simply not respond to thyroid or adrenal treatments.

In this way the body is in a condition in which it's not achieving very much in spite of trying hard. It's like spinning your wheels in mud. The body is tired and wired, yet also unable to either stop or get going. An HPA dysfunction sort of issue.

Aa you said, the adrenals control the electrolytes. The ultimate solution thus is to give the adrenals enough stress buffering that they can rest and recuperate. Once they heal and become less responsive, the pattern should reverse itself.

 

[Jayvee]

How is your breathing after Cyproheptadine?

 

[pubh12]

How is your breathing after Cyproheptadine?

It doesn’t change really anything. Just increases my heart rate and makes my pots feel worse

 

[pubh12]

When sitting straight or standing it's fine. Though if my air hunger/suffocation flares up then no position will help. Most symptoms have been improving slowly with time, stress avoidance and stress buffers like ca, mg, zinc, glycine and lecithin.

My hair test shows a deficiency of all electrolytes, called four lows, which is the most difficult pattern to fix in hair mineral analysis. That alone can take a couple of years of targeted treatment to reverse, otherwise it can be pretty intractable. A hair test could give some insight into your case too.

Ah i see. Mine is poor 24/7 regardless thé position of my body.

 

[pubh12]

@md_a
@Grapelander

Saw you guys talking about Methemoglobin issues after Covid and I’m wondering what you think of the possibility it could be behind my breathing woes.

So I had mentioned in the OP that it was remarked how dark my blood is when I get blood drawn. It’s also scarily slow and thick to come out (I even had blood clots which is pretty unusual at my age).

I was exploring the possibility of Methemoglobinhemia, because of their comment of my blood. There are two common antidotes for Methemoglobin caused by drugs- methelyne blue and IV vitamin C. I was taking 3 g of vitamin C a day (one case study of oral working at 3G) but I’m wondering if my awful iron saturation , low iron serum and probably low ferritin ( I think my CRP is falsely elevating it) might be hindering its absorption. Also a glutathione déficency which I think is common with my illnesses can help.

I drew my blood with a small needle to look at the color and it’s still quite dark even after taking 3 grams of C for a couple of weeks. . I know veinous blood is darker than atrial but even so someone who looks at blood all the time still remarked on it without me prompting them to.

Could Methemoglobinhemia cause such awful breathing issues like I’m experiencing? I don’t know if I’m allowed to post the pics of the drawn blood but I can PM them if you actually want to see the color.

 

[pubh12]

Could a lack of calcium cause severe breathing issues ? I was taking high doses of magneisum when this all began as well, and I don’t eat much calcium since I’m lactose intolerant but my calcium serum levels are always normal. My vitamin d is also a bit low

 

[Peatress]

Calcium deficiency can cause similar issues but it's also possible that it's vaccine injury. It wouldn't hurt to start getting more calcium and vitamin D, especially if you are supplementing a lot of magnesium

11 Signs & Symptoms of Calcium Deficiency (Hypocalcemia) - SelfDecode Labs

Calcium deficiency can take a serious toll on your health. Learn how to spot the basic signs and symptoms of low blood calcium.

labs.selfdecode.com

 

[pubh12]

Calcium deficiency can cause similar issues but it's also possible that it's vaccine injury. It wouldn't hurt to start getting more calcium and vitamin D, especially if you are supplementing a lot of magnesium

11 Signs & Symptoms of Calcium Deficiency (Hypocalcemia) - SelfDecode Labs

Calcium deficiency can take a serious toll on your health. Learn how to spot the basic signs and symptoms of low blood calcium.

labs.selfdecode.com

Vaccine injury in what way? Like nerve damage ? It caused a deficiency in something? I feel like it was more likely from covid since that came on closer to the issues.

I have been trying to come to terms that this may be permanent which is a very depressing thought.

 

[Peatress]

Vaccine injury in what way? Like nerve damage ? It caused a deficiency in something? I feel like it was more likely from covid since that came on closer to the issues.

I have been trying to come to terms that this may be permanent which is a very depressing thought.

Have you tried thiamine?

Dysautonomia and Hypoxia - Hormones Matter

Is thiamine deficiency and the resultant hypoxia involved in the myriad of autonomically controlled systems currently labeled dysautonomia?

www.hormonesmatter.com

Is Thiamine the Answer? - Hormones Matter

Thiamine is essential to cellular energy and energy stimulation is the essential factor required to treat any disease.

www.hormonesmatter.com

How Can Something As Simple as Thiamine Cause So Many Problems? - Hormones Matter

Is thiamine deficiency too simple to explain the devastating nature of the systemic adverse reactions to some vaccines and medications?

www.hormonesmatter.com

 

[pubh12]

Have you tried thiamine?

Dysautonomia and Hypoxia - Hormones Matter

Is thiamine deficiency and the resultant hypoxia involved in the myriad of autonomically controlled systems currently labeled dysautonomia?

www.hormonesmatter.com

Is Thiamine the Answer? - Hormones Matter

Thiamine is essential to cellular energy and energy stimulation is the essential factor required to treat any disease.

www.hormonesmatter.com

How Can Something As Simple as Thiamine Cause So Many Problems? - Hormones Matter

Is thiamine deficiency too simple to explain the devastating nature of the systemic adverse reactions to some vaccines and medications?

www.hormonesmatter.com

Yeah that’s my current trial. Going to try to work up to around 900mg of allithiamine a day. I got to 450 yesterday and I feel breathing is worse today somehow.