Almost crippling breathing problems?

[ThereseFlower]

Hi,Dave

I have exactly the same issue. Its actually one of the most debilitating symptoms i have. Not only that even the smallest exertion like getting out of bed leaves me out of breath, im at the point where most of the time i steuggle to speak because lack of air and energy in the chest. Very hard to explain. Its a mixture of breathlesness with weakness in the chest area, trembling, pain, gasping for air. Im also in the Uk. One doctor said its anxiety!!! I lost it a bit.

Because of the inability to speak i almost isolated myself completely, i simply struggle to keep a five minute conversation without gasping for air.


I am planning to do a chest x ray, probably privately since i doubt a gp would send me for one... they just refuse to listen or even try to umderstand...

I will keep you imformed if that x ray will show anything.

All the best and dont loose hope.

I have been told that this arises from a cellular problem.
Mine improved, but now I have asthma that I didn't have then. I had trouble at times being able to speak for the same issue you mentioned and this was long before I ever had asthma. I have been ill with ME over 27 years. Please rest rest rest and find a way to get the best nutrition possible. No one, especially a non-expert physician will ever understand fully what they haven't lived themselves. You must be a decision maker when it is too difficult to make decisions. This is in order just to stay alive.

 

[Merida]

Severe breathing /breathless issues : These kinds of severe symptoms can be associated with Chiari malformations and related disorders. This diagnosis takes a neurosurgeon familiar with Chiari consult and carefully done MRIs.

 

[Baz493]

My own respiratory issues seem likely to have been induced by lack of dopamine. Inhalation of bottle coating sprays has been shown to destroy the striatum, part of the brain sitting just above the nasal passages. The dopamine producing neuronal death in this region is called Parkinson's disease so loss of dopamine means that muscles and the body start malfunctioning. It seems that the failure of my respiratory muscles was a consequence of this. Investigations start in December.

As for cellular issues resulting in the same thing this usually involves mitochondrial dysfunctions. A whole range of toxic exposures induce disruptions at any a variety of points in the Krebs cycle. This generally switches cellular energy production from aerobic to anaerobic (glycolytic) although some exposures induce disruptions in both. This can result in respiratory issues due to the reduction of energy supply for powering breathing.

 

[tatt]

Hello. I'm also in the uk and I've been attending an MS centre for hyperbaric Oxygen therapy. The sessions are cheaper than commercial sessions but you'll likely need to try 20 sessions. Your nearest centre might be this one https://www.neurotherapycentre.org/oxygen-therapy Mine made me very tired initially, after about 10 sessions I found I was thinking better and the tiredness reduced after about 14. Now I'm on one maintenance session a week I'm getting less tired afterwards. Still get breathless on hills, dont have to stop as often to breathe. Not a cure for me but I was going down hill before and I'm not giving up something that helps.

You did mention throwing a lot of money at it so might be worth a try if you can tolerate it.

Did you get a CPAP machine for night use? You might find raising the head of the bed would help. We stuck wood under ours and also part way down for extra support but that is tricky with anything other than a divan. Bed wedges take a lot of getting used to (well anything that raises the head does but our wood trick meant we could do it gradually) but might help you https://putnams.co.uk/collections/b...bed-wedge-mattress-tilter?variant=35289429575

If your voice croaks in the morning you may have night-time reflux - it's frequently missed. I think you may have mentioned omeprazole? Try taking it at night.

 

[TracyD]

For years, I had a less severe verison of the same phenomenon. Zinc Selenium and folate (B9) helped noticeably. In my case, I'm homozygous for the gene variant that reduces my ability to process folic acid (also B9 - but not benign!), so I not only added folate but eliminated folic acid.

Post-COVID, I had much worse breathlessness. Two more things helped: the breathing program from stasis.life and Lipitor.

 

[alewis]

For years, I had a less severe verison of the same phenomenon. Zinc and folate (B9) helped noticeably. In my case, I'm homozygous for the gene variant that reduces my ability to process folic acid (also B9 - but not benign!), so I not only added folate but eliminated folic acid.

Post-COVID, I had much worse breathlessness. Two more things helped: the breathing program from stasis.life and Lipitor.

TracyD, are you now taking the Lipitor indefinitely? Or did it improve your breathing and then you've been able to discontinue? One last question: this would be an off-label use, I presume, since Lipitor is a statin typically prescribed to reduce cholesterol? Thank you!

 

[Baz493]

TracyD, I assume that you are talking about the MTHFR gene mutation, in relation to your folate issue; a fairly common problem even if doctors don't acknowledge it often enough. Regarding the zinc I have recently learnt about a set of enzymes in our bodies called serine proteases. Their job is to break down proteins which have served their purposes and need to be replaced. Allergies and infections cause activation of mast cells and the release of serine proteases so that they can reach pathogenic levels. As some of the proteins which the enzymes break down are the 'glue' which holds our bodies together, called laminins, this can become a problem. Ironically, as our skin, lungs, and gastrointestinal tract, are held together by these laminins this can cause exacerbation of the allergies inducing the high serine protease levels. Zinc is able to bind to serine proteases, inhibiting their activity and improving their related health issues. There are also lots of other natural products which have been investigated for inhibiting serine proteases as well as a number of medications.

 

[TracyD]

TracyD, are you now taking the Lipitor indefinitely? Or did it improve your breathing and then you've been able to discontinue? One last question: this would be an off-label use, I presume, since Lipitor is a statin typically prescribed to reduce cholesterol? Thank you!

Lipitor improved my breathing and other symptoms. I took it every day until I stabilized; then I weaned myself from it completely. However, my health would start to decline because of a new infection or overexertion or ... So now I take it at least once a week.
By the way, when I asked my specialist how long I would need to take Lipitor, she said that no one knows the answer. She prescribed it to help against microclots, which, as I understand it, are built from cholesterol. So, if microclot formation is ongoing, I'll be taking the Lipitor indefinitely.

 

[TracyD]

TracyD, I assume that you are talking about the MTHFR gene mutation, in relation to your folate issue; a fairly common problem even if doctors don't acknowledge it often enough. Regarding the zinc I have recently learnt about a set of enzymes in our bodies called serine proteases. ...

Yes, it surprising that being tested for MTHFR status isn't done more regularly. Switching to folate improved not only my breathing but my IBS, too.

That's interesting about zinc. Unfortunately, I read my own website incorrectly: selenium reduced my breathing problem. Anyone can see (most of) what I've tried and my current regimen here: https://tracyduvall.com/2017/11/07/me-cfs-my-medications-and-supplements/

 

[Baz493]

Your mention of Lipitor vaguely rang a bell for me this morning. I was certain that there was a connection to something I had read about relating to my own condition and there was. I have had high cholesterol levels for as long as I can remember, probably related to my own gluten intolerance. Not long ago I found research which connects serine protease levels which cholesterol levels and inhibition of serine proteases with reduced cholesterol levels. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997356/ https://pubmed.ncbi.nlm.nih.gov/29653102/ I have been referred for investigation of Parkinson's disease, based upon work exposures which induce the condition as well as my current condition. So recalling even recently researched information can often involve vague memories, lol.

If it was selenium which helped your lung condition then it's likely to have been an issue with thioredoxin, a protein related to oxidative stress, and possibly allergy. The thioredoxin reductase enzymes require selenium binding to function properly and are involved in helping to reduce severity of a range of diseases. https://pubmed.ncbi.nlm.nih.gov/22293327/ It isn't impossible, however, that any of a range of other metalloproteinases could also be involved. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6162857/

 

[Baz493]

Taking a look at the link you provided I would immediately suggest that the type 2 collagen antibodies might be resultant from destruction of the laminins which bind them in place. Picture a situation where serine proteases cut the laminins which anchor them, so that they are released into your body. Your body rushes to replace them only to find that they still won't anchor and a constant stream of the collagen releases into your body. Recognising the free type 2 collagen as being a potential health issue the body then responds by destroying it with antibodies. https://pubmed.ncbi.nlm.nih.gov/34502257/

Regarding your myasthenia gravis I would suggest the possibility of something similar occurring with the acetylcholine receptors. This research doesn't relate to myasthenia but seems relevant. https://pubmed.ncbi.nlm.nih.gov/9314538/

 

[tatt]

Your mention of Lipitor vaguely rang a bell for me this morning. I was certain that there was a connection to something I had read about relating to my own condition and there was. I have had high cholesterol levels for as long as I can remember, probably related to my own gluten intolerance. Not long ago I found research which connects serine protease levels which cholesterol levels and inhibition of serine proteases with reduced cholesterol levels. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997356/ https://pubmed.ncbi.nlm.nih.gov/29653102/ I have been referred for investigation of Parkinson's disease, based upon work exposures which induce the condition as well as my current condition. So recalling even recently researched information can often involve vague memories, lol.

If it was selenium which helped your lung condition then it's likely to have been an issue with thioredoxin, a protein related to oxidative stress, and possibly allergy. The thioredoxin reductase enzymes require selenium binding to function properly and are involved in helping to reduce severity of a range of diseases. https://pubmed.ncbi.nlm.nih.gov/22293327/ It isn't impossible, however, that any of a range of other metalloproteinases could also be involved. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6162857/

Have you been tested for familial hypercholesterolaemia? https://www.heartuk.org.uk/cholesterol/what-is-fh

 

[Baz493]

No, although I have had past contact with my birth family, and know of their familial issues with gluten intolerance and multiple sclerosis, we haven't been in contact in years. I was talked out of being tested for coeliac disease, by a previous GP, but assume that my cholesterol issues relate to my extreme response to gluten. People with coeliac disease tend to develop increasingly more severe mineral deficiencies as they age and both zinc and copper deficiencies are connected to the occurrence of hypercholesterolemia. https://pubmed.ncbi.nlm.nih.gov/3295705/ It was my reaction to gluten which induced lactose intolerance when I was still eating it and which can now send me to hospital when it accidentally enters my diet now that I avoid it.