Almost crippling breathing problems?

[David Tyrer]

Ive had so many tests over the years! The only thing that comes up is Lyme and bartonella, which I’m currently treating. This specific symptom started about 2 months ago though and since then I’ve had bloodwork for MG (blocking, binding, musk). All 3 were normal. I had a few antibodies show up on the binding test, but 2 neuros told me that’s still considered normal and not indicative of MG. One even told me it’s a useless test. I’m seeing a 3rd in a few weeks. They all tell me nothing is wrong. I haven’t had any nerve testing done, bc they told me they didn’t think I needed it since my symptoms don’t match anything neurological. I’m considering doing them just in case.
What other symptoms do you have?

Well, it started exactly 2 years ago with some intermittent shortness of breath. Which gradually became more frequent. At first, thought it was panic attacks, then thought it was a problem related to my afib.

It worsened and I lost a lot more weight, started having fatigue in my limbs, weird feelings of lumps in my side when I was lying down. The breathlessness was usually fine when I lay down.

Fast forward 2 years, I have CFS diagnosis (although, I suspect it was brought on by whatever has caused this breathless issue), increased heart issues due to my afib. I'm short of breath all the time but much worse on exertion. I struggle to breathe more when lying on my back or either side. Weirdly, it's not as bad when I first wake up. I crash badly when I overdo it, but again, what is ME and what is the breathing problem?

All I know is that several docs and specialists have said that it's either a rare, often unheard of symptom of CFS/ME, or it's totally unrelated because shortness of breath doesn't normally present like this with ME.

How about you?

 

[Issie]

Lyme test can have a high chance of being inaccurate. There have been so many false negatives. The pathogens of Lyme has 3 stages it can go into and it can hide and be hard to detect. I'm not sure which test you had or how accurate it is.

Did they test you for coinfection too? There are other type things that can be transmitted by ticks and mosquitoes alike.

Not saying it IS or ISNT this. But the bioscientist that I worked with was always of the opinion, if it seems to fit and there were the red ring rash, science can't always pick things up. Still so many other pathogens that are just now being discovered, that there is not yet a test for.

My having had the red ring, the symptoms and coinfection was determined to treat. Antibiotics did not make a difference but herbs did. I'm still on an herb that is supposed to help what they call Post Lyme disease. Or resistant types that morph and lay dormant and then reactivate. That seems to be helping. It is Lomatium and Red Root. Be careful of most horrible rash possibilities if your liver isn't up to detox properly, that could happen with first taking. Get liver in good shape first. I did Not get the rash. Coptis was also a big help to me. There are other herbs we used for different coinfection. Expect herx response and use binders if you tolerate them. I liked citrus pectin best. I'm super sensitive to everything and these are what seemed to be most tolerable. I was also working on CIRS at the same time.

My breathing is better. But I still have many other things I still deal with. So not saying this is all of it. It is only one piece to the puzzle. We just work to get the toxic load down, where we can, and then go to the next puzzle piece and see where it goes.

 

[Amwags]

Hi Issie, not that I'm asking for anything more than your advice, but would you say that this was pretty conclusive on the whole?

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David-
Lyme testing is highly inaccurate, especially if your body isn’t producing antibodies. So, I wouldn’t take this result as a definitive answer. Do you have access to Igenex testing? This is a much better test.

 

[Issie]

I'm finding doing breathing exercises and also using mouth tape at night is improving my breathing considerably. I dont appear to even have apena any more and dont use the CPAP now.

 

[Amwags]

Lyme test can have a high chance of being inaccurate. There have been so many false negatives. The pathogens of Lyme has 3 stages it can go into and it can hide and be hard to detect. I'm not sure which test you had or how accurate it is.

Did they test you for coinfection too? There are other type things that can be transmitted by ticks and mosquitoes alike.

Not saying it IS or ISNT this. But the bioscientist that I worked with was always of the opinion, if it seems to fit and there were the red ring rash, science can't always pick things up. Still so many other pathogens that are just now being discovered, that there is not yet a test for.

My having had the red ring, the symptoms and coinfection was determined to treat. Antibiotics did not make a difference but herbs did. I'm still on an herb that is supposed to help what they call Post Lyme disease. Or resistant types that morph and lay dormant and then reactivate. That seems to be helping. It is Lomatium and Red Root. Be careful of most horrible rash possibilities if your liver isn't up to detox properly, that could happen with first taking. Get liver in good shape first. I did Not get the rash. Coptis was also a big help to me. There are other herbs we used for different coinfection. Expect herx response and use binders if you tolerate them. I liked citrus pectin best. I'm super sensitive to everything and these are what seemed to be most tolerable. I was also working on CIRS at the same time.

My breathing is better. But I still have many other things I still deal with. So not saying this is all of it. It is only one piece to the puzzle. We just work to get the toxic load down, where we can, and then go to the next puzzle piece and see where it goes.

Issie- did you have this same breathing issue? With diaphragm involvement?

 

[Issie]

Yes, shortness of breath. Panting like a racing horse at the end of the race. And totally feeling like I couldn't get enough air. Hypoxia is a huge issue with many of us. And appears there is also issues with CO2.

I don't think this is all Lyme related, however. I feel it is a symptom connected to a lot of different labels. ME/CFS is one of those labels. As is Lyme, POTS, MCAS. All these labeled illness have hypoxia and shortness of breath.

But if we suspect pathogens we maybe can do something about as one of the possible "cause", we address it and then see what is left. It probably won't fix it completely. But it may take some of the burden down.

Hypoxia is a big problem. And then reperfusion issues when we get the oxygen back in and where it needs to go.

 

[David Tyrer]

Lyme test can have a high chance of being inaccurate. There have been so many false negatives. The pathogens of Lyme has 3 stages it can go into and it can hide and be hard to detect. I'm not sure which test you had or how accurate it is.

Did they test you for coinfection too? There are other type things that can be transmitted by ticks and mosquitoes alike.

Not saying it IS or ISNT this. But the bioscientist that I worked with was always of the opinion, if it seems to fit and there were the red ring rash, science can't always pick things up. Still so many other pathogens that are just now being discovered, that there is not yet a test for.

My having had the red ring, the symptoms and coinfection was determined to treat. Antibiotics did not make a difference but herbs did. I'm still on an herb that is supposed to help what they call Post Lyme disease. Or resistant types that morph and lay dormant and then reactivate. That seems to be helping. It is Lomatium and Red Root. Be careful of most horrible rash possibilities if your liver isn't up to detox properly, that could happen with first taking. Get liver in good shape first. I did Not get the rash. Coptis was also a big help to me. There are other herbs we used for different coinfection. Expect herx response and use binders if you tolerate them. I liked citrus pectin best. I'm super sensitive to everything and these are what seemed to be most tolerable. I was also working on CIRS at the same time.

My breathing is better. But I still have many other things I still deal with. So not saying this is all of it. It is only one piece to the puzzle. We just work to get the toxic load down, where we can, and then go to the next puzzle piece and see where it goes.

It was the ELISA test I had, which I'm led to believe now isn't all that reliable. I don't remember having had the red ring/rash but the early symptoms were very similar. I wasn't tested for coinfection, no. It wasn't actually even mentioned when I first went to my GP with my symptoms. He went straight to anxiety. So I went to see a private GP who went straight to auto immune disorders.

 

[David Tyrer]

David-
Lyme testing is highly inaccurate, especially if your body isn’t producing antibodies. So, I wouldn’t take this result as a definitive answer. Do you have access to Igenex testing? This is a much better test.

No, I don't, unfortunately! The private lab I was using is called Medichecks, they're probably the best known over here but they only do the Elisa test.

I'll keep a look out for an alternative lab though.

 

[Issie]

Herbals worked better for me. Maybe find a Functional doc who is familiar with Lyme and CIRS and have them guide you.

 

[David Tyrer]

Yes, shortness of breath. Panting like a racing horse at the end of the race. And totally feeling like I couldn't get enough air. Hypoxia is a huge issue with many of us. And appears there is also issues with CO2.

I don't think this is all Lyme related, however. I feel it is a symptom connected to a lot of different labels. ME/CFS is one of those labels. As is Lyme, POTS, MCAS. All these labeled illness have hypoxia and shortness of breath.

But if we suspect pathogens we maybe can do something about as one of the possible "cause", we address it and then see what is left. It probably won't fix it completely. But it may take some of the burden down.

Hypoxia is a big problem. And then reperfusion issues when we get the oxygen back in and where it needs to go.

I've looked into POTS and MCAS. My GP and cardiologist have never even considered it though, despite my existing heart issues. All of my problems really started following an ablation for atrial fibrillation 3 years ago. About 12 months later, the problems began and have increasingly got worse since.

It started as a mild shortness of breath that was, nonetheless, very worrying for a previously fit and healthy 36 year old. I'm now 39 and I almost had to drag myself up the stairs to bed about an hour ago (10:23pm now!).

But I've often wondered whether 2 years of increasing breathless has become a cycle of not getting enough oxygen, muscles/vital muscles/organs weaken, ability to breath worsens, oxygen intake gets worse, etc. How do you break this cycle? I've been trying all kinds of breathing exercises, muscle strengthening exercises, using the Breather device I talked about earlier. It helps initially, and then I crash hard again. Have either of you ever tried the Perrin Technique? I'm awaiting on local osteo to open to give that a try. I visited a chiro in the meantime 6 times and that slightly helped with neck issues but no knockon effects. I'm throwing anything at the prob now.

 

[Issie]

I ordered the info by Patrick McKeown....The Oxygen Advantage. I ordered the video and the book. Still reading the book and doing the breathing things. Also have found the mouth tape at night helping. Never would had thought that one would work, but it is helping.

Some POTS people were thought to have sinus node problems and correction made their POTS worse. Maybe a neurologist who is aware of POTS would be able to determine if that's an issue. Hard to find docs for MCAS. And now, I'm doing totally different than what is ordinarily recommended for MCAS. See the blog on this by Bayard. I'm doing much better now, off antihistamines.

Sorry to hear you are so ill right now. I hope some of this will help!

 

[Issie]

This was sent to me today and is some very good information on wearing a mask with COVID and breathing properly.

Dear Issie,
Please find below the YouTube link to yesterday’s webinar titled: How to breathe while wearing a face mask. Using Zoom our maximum capacity is 100 guests. Apologies to those of you who waited and could not log in, or who were logged out after logging in.

Link to Youtube:

During this webinar, I discussed the following in relation to wearing a mask:
What causes the increased feeling of air hunger
Whether carbon dioxide reaches dangerously high levels
Why your blood oxygen saturation may drop while wearing a mask
How to breathe optimally to reduce the sensation of breathlessness
How to breathe optimally to improve blood oxygen saturation

I shared an article on the importance of nasal breathing for Covid19, along with a paper showing that breathing a rate of six breaths per minute improves blood oxygen saturation at altitude. Both articles can be accessed here:

Covid19: https://www.sciencedirect.com/science/article/pii/S1286457920300800?via=ihub
How to breathe to improve the oxygen in the blood: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3495772/

Also, here is a recent study on the impact of mouth breathing on obstructive sleep apnea: https://onlinelibrary.wiley.com/doi/abs/10.1002/lary.28774

Should you ever require a two hour small group live online clinic with me to address breathing difficulties, asthma, snoring, sleep apnea, anxiety or panic attacks - please check this link:

Live Online Clinic with Patrick McKeown - Buteyko Clinic International

Buteyko Clinic provides international training in the Buteyko Breathing Method to clients and healthcare professionals. Learn Buteyko Breathing today!

buteykoclinic.com

Lastly, the MyoTape that I demonstrated during the webinar – new stock will be soon available. See MyoTape.com

With best wishes

Patrick

 

[Cort]

I ordered the info by Patrick McKeown....The Oxygen Advantage. I ordered the video and the book. Still reading the book and doing the breathing things. Also have found the mouth tape at night helping. Never would had thought that one would work, but it is helping.

Some POTS people were thought to have sinus node problems and correction made their POTS worse. Maybe a neurologist who is aware of POTS would be able to determine if that's an issue. Hard to find docs for MCAS. And now, I'm doing totally different than what is ordinarily recommended for MCAS. See the blog on this by Bayard. I'm doing much better now, off antihistamines.

Sorry to hear you are so ill right now. I hope some of this will help!

I am looking into breathing issues now. I am certain that my breathing is off.

 

[Amwags]

I've looked into POTS and MCAS. My GP and cardiologist have never even considered it though, despite my existing heart issues. All of my problems really started following an ablation for atrial fibrillation 3 years ago. About 12 months later, the problems began and have increasingly got worse since.

It started as a mild shortness of breath that was, nonetheless, very worrying for a previously fit and healthy 36 year old. I'm now 39 and I almost had to drag myself up the stairs to bed about an hour ago (10:23pm now!).

But I've often wondered whether 2 years of increasing breathless has become a cycle of not getting enough oxygen, muscles/vital muscles/organs weaken, ability to breath worsens, oxygen intake gets worse, etc. How do you break this cycle? I've been trying all kinds of breathing exercises, muscle strengthening exercises, using the Breather device I talked about earlier. It helps initially, and then I crash hard again. Have either of you ever tried the Perrin Technique? I'm awaiting on local osteo to open to give that a try. I visited a chiro in the meantime 6 times and that slightly helped with neck issues but no knockon effects. I'm throwing anything at the prob now.

Hi David-
Curious how your breathing issue is now. Any better??

 

[jaminhealth]

OP: Have you been on top of potassium and magnesium, MANY are deficient or very low in these valuable minerals and especially for heart health...and in general overall health.

Also, grape seed extract is a great blood thinner/cleaner but one can't take it if they take pharma blood thinners. I'm not challenged with CFS but I'm on top of my overall health at 82 and not a fan of pharma drugs.

 

[roxi]

I've looked into POTS and MCAS. My GP and cardiologist have never even considered it though, despite my existing heart issues. All of my problems really started following an ablation for atrial fibrillation 3 years ago. About 12 months later, the problems began and have increasingly got worse since.

It started as a mild shortness of breath that was, nonetheless, very worrying for a previously fit and healthy 36 year old. I'm now 39 and I almost had to drag myself up the stairs to bed about an hour ago (10:23pm now!).

But I've often wondered whether 2 years of increasing breathless has become a cycle of not getting enough oxygen, muscles/vital muscles/organs weaken, ability to breath worsens, oxygen intake gets worse, etc. How do you break this cycle? I've been trying all kinds of breathing exercises, muscle strengthening exercises, using the Breather device I talked about earlier. It helps initially, and then I crash hard again. Have either of you ever tried the Perrin Technique? I'm awaiting on local osteo to open to give that a try. I visited a chiro in the meantime 6 times and that slightly helped with neck issues but no knockon effects. I'm throwing anything at the prob now.

I dont know if you remember, i was complaining of the same horrible symptom and i must say it got much better for me without me doing anything specifically for it. It is a symptom of ME and it will get better once the ME gets better.

I did perin for about 9 months and the only improvements were in levels of fatigue and nocturnal sweating.

Im currently doing the GUPTA programme wich i highly highly recommend, and ive only started the guaifenesin protocol and i can feel a shift in my body so i am very hopeful. Please consider both gupta and guaifenesin protocol dr Amand. ❤️

 

[David Tyrer]

Hi David-
Curious how your breathing issue is now. Any better??

Hi Amwags, unfortunately not. In many ways it's actually gotten worse.

Very much feels like a muscular weakness to me, still. My voice becomes very croaky and weak when I talk too much now too.

 

[David Tyrer]

OP: Have you been on top of potassium and magnesium, MANY are deficient or very low in these valuable minerals and especially for heart health...and in general overall health.

Also, grape seed extract is a great blood thinner/cleaner but one can't take it if they take pharma blood thinners. I'm not challenged with CFS but I'm on top of my overall health at 82 and not a fan of pharma drugs.

Hi, yes thankfully, I'm taking plenty of magnesium and potassium - it's a routine I got into after being diagnosed with atrial fibrillation. Actually upped my doses over the past few months as well.

The only pharma meds I take are ramipril for high BP and occasional omeprazole for IBS. I've tried to move away from move but it's difficult as little else helps either of those. Even a healthy diet, reducing salt, etc. has done nothing for my high BP. Which isn't dangerously high, just a bit on the high side.

 

[David Tyrer]

I dont know if you remember, i was complaining of the same horrible symptom and i must say it got much better for me without me doing anything specifically for it. It is a symptom of ME and it will get better once the ME gets better.

I did perin for about 9 months and the only improvements were in levels of fatigue and nocturnal sweating.

Im currently doing the GUPTA programme wich i highly highly recommend, and ive only started the guaifenesin protocol and i can feel a shift in my body so i am very hopeful. Please consider both gupta and guaifenesin protocol dr Amand. ❤

I've just seen our conversation again actually Roxi and I'm glad to hear that your symptoms improved.

My breathing is definitely worse on days when my CFS is worse, but I've yet to reach a stage where my CFS is good enough to see whether my breathing will improve too! I'm following Myhill and Puri's advice re: supplements at the moment and I'm reading through Myhill's book.

I'd be happy to try Perrin's technique but have yet to be able to find a practitioner near enough. I'll give anything a try to be honest!

 

[Amwags]

Hi Amwags, unfortunately not. In many ways it's actually gotten worse.

Very much feels like a muscular weakness to me, still. My voice becomes very croaky and weak when I talk too much now too.

David-
I’m sorry to hear that. I started treating for Lyme, Bart and babesia and mine started improving. It went away for a while and I could sleep again. It comes and goes now when I ramp up treatment. Japanese Knotweed helped my voice issues. I never got croaky, but I had issues in my throat for sure. It’s gone now. Have you tried to treat for Lyme and coinfections?? I know you tested negative, but that test is garbage and with a history of afib and head symptoms, I strongly suggest you look into it more. It screams Lyme!