Almost crippling breathing problems?

[debs]

For David, and anyone else coming across this thread for whatever unfortunate reason. You may have compromised connective tissue. You may know more about it than I do. What I do know having Lyme and/or co-infections has turned most of my joints into gummy bears. Yes, many of my joints feel like they're made of gummy bears.
So here is something you can try. An "inflatable cervical neck traction" device. It is essentially an inflatable pillow that you strap around your neck. It inflates with a pump like the ones on a blood pressure cuff. You pump as much air in it as you like. The pillows use your collarbones to push your skull upwards. It takes a while to set your jaw right for yourself, but you'll figure it out. Look on Amazon, or wherever you shop, for the one with three inflatable layers. They are approx. $20 or less. I have used one of these for years now. I keep it by the bed, so I can roll over and put it on those times when I get confused and can't figure out why it's so hard to relax and hard to breathe. (I don't have anxiety). I have a theory about the variability in the "performance" of connective tissue, based on a number of factors, but it has to wait until I can find the right words to explain it. Oh, and the reason I posted this? I started thinking about the time I had my "paralysed diaphragm" I had an x-ray done and found mild degeneration in my neck. Nothing fixed the "paralysed diaphragm". It just went away as strangely as it appeared. Not long after that I bought this device because I was miserable.

 

[Apo Sci]

I suspect ligament hypermobility is an effect of the ME disease process. I developed reversible thumbs about 10 years after being ME positive. Never had it as an adult before. May explain why severe ME patients have craniocervical instability problems with postural orthostatic tachycardia syndrome) that responds to surgical fixation.

 

[Kristine]

I'm had a second ESV that my doc and I watched it turn to CFS AND FIBROMYAGIA. IT took 6 months for my numbers to go down enough so I could work. I literally watched my diseases start up. I'm disabled completely, can leave bed for a couple hours, but the breathing thing has gotten worse over the years. Had heart checked, all good, nothing wrong with respiration, have no CFS doctor near me. Suffering 16 yrs and just keep progressing. I don't want my life to end from these diseases. I'm so frustrated I can't find a treatment. Moving to Florida where I feel better. Is it worth it to spend money on CFS doctor written as great here in group or am I going to waste 500.00. I will have doc check on Lyme but have been on antibiotics before, within last 3 months. I do have asthma and it could be worse but why? Maybe some of us who have fibromyalgia have the tender points there and so they cause the breathing problem. I did have terrible fall, maybe hit area and that caused this problem. Since getting these diseases have not felt like I could catch my breath. Maybe I can check out supplements. Are they in USA?

 

[Apo Sci]

I'm had a second ESV that my doc and I watched it turn to CFS AND FIBROMYAGIA. IT took 6 months for my numbers to go down enough so I could work. I literally watched my diseases start up. I'm disabled completely, can leave bed for a couple hours, but the breathing thing has gotten worse over the years. Had heart checked, all good, nothing wrong with respiration, have no CFS doctor near me. Suffering 16 yrs and just keep progressing. I don't want my life to end from these diseases. I'm so frustrated I can't find a treatment. Moving to Florida where I feel better. Is it worth it to spend money on CFS doctor written as great here in group or am I going to waste 500.00. I will have doc check on Lyme but have been on antibiotics before, within last 3 months. I do have asthma and it could be worse but why? Maybe some of us who have fibromyalgia have the tender points there and so they cause the breathing problem. I did have terrible fall, maybe hit area and that caused this problem. Since getting these diseases have not felt like I could catch my breath. Maybe I can check out supplements. Are they in USA?

I think only the severe ME cases should see the ME specialists unless you have lots of money to burn. I rely on self treatment and my internist and rheumatologist.

What did me in was getting EBV then having sex with a girlfriend who had active HHV6 when I was still recovering fro the EBV. Together they became ME.

 

[David Tyrer]

For David, and anyone else coming across this thread for whatever unfortunate reason. You may have compromised connective tissue. You may know more about it than I do. What I do know having Lyme and/or co-infections has turned most of my joints into gummy bears. Yes, many of my joints feel like they're made of gummy bears.
So here is something you can try. An "inflatable cervical neck traction" device. It is essentially an inflatable pillow that you strap around your neck. It inflates with a pump like the ones on a blood pressure cuff. You pump as much air in it as you like. The pillows use your collarbones to push your skull upwards. It takes a while to set your jaw right for yourself, but you'll figure it out. Look on Amazon, or wherever you shop, for the one with three inflatable layers. They are approx. $20 or less. I have used one of these for years now. I keep it by the bed, so I can roll over and put it on those times when I get confused and can't figure out why it's so hard to relax and hard to breathe. (I don't have anxiety). I have a theory about the variability in the "performance" of connective tissue, based on a number of factors, but it has to wait until I can find the right words to explain it. Oh, and the reason I posted this? I started thinking about the time I had my "paralysed diaphragm" I had an x-ray done and found mild degeneration in my neck. Nothing fixed the "paralysed diaphragm". It just went away as strangely as it appeared. Not long after that I bought this device because I was miserable.

Thanks Debs, that's interesting about the inflatable pillow. I have one of those normal neck pillows from flying years ago. I will bear this in mind though.

I've been asking for some sort of respiratory physiotherapy for about 9 months now.

I am awaiting my very first CF group session which I'm not too sure what occurs in but I imagine they'll have answers to some of my questions.

With regards LD, I am looking at booking private tests now, as it's highly unlikely my GP will give me antibiotics without any tests first.

 

[David Tyrer]

I suspect ligament hypermobility is an effect of the ME disease process. I developed reversible thumbs about 10 years after being ME positive. Never had it as an adult before. May explain why severe ME patients have craniocervical instability problems with postural orthostatic tachycardia syndrome) that responds to surgical fixation.

That's crazy.

My wife has ME and hypermobility. But I wonder which came first. She was diagnosed with HM when she was 12 but ME only many years later but considering how hard it is to diagnose, I wonder whether she had both all along anyway.

I have to say, I have noticed some degree of POTS myself over the past few months. I also have posturally stimulated ectopics too, due to having atrial fibrillation. These have increased no end in the past 6 months.

 

[David Tyrer]

I'm had a second ESV that my doc and I watched it turn to CFS AND FIBROMYAGIA. IT took 6 months for my numbers to go down enough so I could work. I literally watched my diseases start up. I'm disabled completely, can leave bed for a couple hours, but the breathing thing has gotten worse over the years. Had heart checked, all good, nothing wrong with respiration, have no CFS doctor near me. Suffering 16 yrs and just keep progressing. I don't want my life to end from these diseases. I'm so frustrated I can't find a treatment. Moving to Florida where I feel better. Is it worth it to spend money on CFS doctor written as great here in group or am I going to waste 500.00. I will have doc check on Lyme but have been on antibiotics before, within last 3 months. I do have asthma and it could be worse but why? Maybe some of us who have fibromyalgia have the tender points there and so they cause the breathing problem. I did have terrible fall, maybe hit area and that caused this problem. Since getting these diseases have not felt like I could catch my breath. Maybe I can check out supplements. Are they in USA?

I'm sorry to hear that Kristine, I feel awful right now but when I read that some of you guys can't get around much or have other problems like chronic pain, or much worse limb weakness, I feel like I'm a bit lucky.

If only I could get my breathing problem under control!

 

[debs]

I suspect ligament hypermobility is an effect of the ME disease process. I developed reversible thumbs about 10 years after being ME positive. Never had it as an adult before. May explain why severe ME patients have craniocervical instability problems with postural orthostatic tachycardia syndrome) that responds to surgical fixation.

I started thinking the same thing when I read about the stories of those who had surgery. This is a wonderful development and frontier. The joints in my hands are deformed but I've had all the tests and it's not arthritis. I think the same in my neck. However the strength of the connective tissue varies! Some days it's ok and feels like I can blame old age, other days it's pathologically bad and I feel like a rag doll (or bobble head, as the younger crowd has described it!) . Maybe i'm on the way to complete breakdown, or maybe there is a "variable" version of this problem?

I'm disabled completely, can leave bed for a couple hours, but the breathing thing has gotten worse over the years. Had heart checked, all good, nothing wrong with respiration, have no CFS doctor near me.

I was in the same situation years ago. I was so frustrated and went on a short hike with a friend to spite myself. I was ready to fall down, and noticed my hands and face felt slightly swelled. We neared the picnic area and I sat down, took a (generic) Benedryl and chugged a Mt. Dew. To my surprise, the dreaded "decline into crash" halted. So I started using this "bomb" every 4 or 5 hours, or as needed over the course of a few years and it helped me get from "pathetic" to "moderate". I had to quit because the benedryl dried out my mouth and I got cavities, but it was worth it.

 

[debs]

Thanks Debs, that's interesting about the inflatable pillow. I have one of those normal neck pillows from flying years ago. I will bear this in mind though.

I've been asking for some sort of respiratory physiotherapy for about 9 months now.

I am awaiting my very first CF group session which I'm not too sure what occurs in but I imagine they'll have answers to some of my questions.

With regards LD, I am looking at booking private tests now, as it's highly unlikely my GP will give me antibiotics without any tests first.

The important thing about this inflatable thing is the traction and support, like a cast, and you control the amount of it.

If they don't see an obvious need to send you to respiratory therapy, then may I venture a guess it is coming from your neck, and/or nervous system as mine was. I honestly cannot remember how my Paralyzed diaphragm improved. At the time it was bothering me i discovered other things going on, including appendicitis which resulted in surgery (incl. IV antibiotics), pain in my neck for which i bought the inflatable gadget, i was blanking out, (which continues) and as i said the Lyme and Ehrlichiosis. two out of three of those resulted in anti-biotic treatment and the physical therapy for my neck resulted in "occipital neuralgia'.

 

[Merida]

I will add the bit that I have learned. Shallow breathing can be an autonomic issue. For me, it initially came from a neck and thoracic issue.
( injured by a chiropractor, 1998, who ‘ adjusted’ my neck and thoracic area for a sore right hip - no CFS/ FMS prior to this injury).

But in more recently I have had ‘new’ type of air hunger and breathlessness. Had a tick bite with rash ( 2010, Virginia) and am CDC positive for Lyme. ( 5 IgG Borrelia bands, Western blot, Lab Corp) But now there is suspicion of a coinfection too. Long story. So, I agree with debs. The diagnosis of Lyme can be frustrating and difficult. Think a Lyme literate doc is critical. My infectious disease doc is just running me in circles. He doesn’t know current thinking. What a mess.

 

[Apo Sci]

I will add the bit that I have learned. Shallow breathing can be an autonomic issue. For me, it initially came from a neck and thoracic issue.
( injured by a chiropractor, 1998, who ‘ adjusted’ my neck and thoracic area for a sore right hip - no CFS/ FMS prior to this injury).

But in more recently I have had ‘new’ type of air hunger and breathlessness. Had a tick bite with rash ( 2010, Virginia) and am CDC positive for Lyme. ( 5 IgG Borrelia bands, Western blot, Lab Corp) But now there is suspicion of a coinfection too. Long story. So, I agree with debs. The diagnosis of Lyme can be frustrating and difficult. Think a Lyme literate doc is critical. My infectious disease doc is just running me in circles. He doesn’t know current thinking. What a mess.

Good catch. It is common for chiropractors to injure the neck due to excessive manipulation. Some people even get strokes from it and die or can become paralysed.

 

[David Tyrer]

So over the past week or so I started both the pro-biotics and the circumin. After about 4-5 days my breathing got worse and my bloating did too! I just can't win ha.

So I've stopped both. I'm going to start up with the circumin again, maybe on a lower 'dose' than the packaging suggests this time, then slowly introduce the PB and see if that helps.

 

[David Tyrer]

Also, I'm having a blood panel done for Lyme's tomorrow afternoon, so may know by the end of this/start of next week.

 

[Merida]

Also, I'm having a blood panel done for Lyme's tomorrow afternoon, so may know by the end of this/start of next week.

Gee make sure the panel includes the IgG Western Blot. My 'screening' was negative even though I had a known Virginia tick bite with rash in 2010. A naturopath finally did the complete panel ( IgM/ IgG Borrelia burgdorferi ) and I have 5 positive IgG bands - positive by strict CDC criteria.

 

[Merida]

So over the past week or so I started both the pro-biotics and the circumin. After about 4-5 days my breathing got worse and my bloating did too! I just can't win ha.

So I've stopped both. I'm going to start up with the circumin again, maybe on a lower 'dose' than the packaging suggests this time, then slowly introduce the PB and see if that helps.

Yes, I also have trouble with Probiotics. Problem is, the bacteria you introduce are not your own. My immune system seems so sensitive that these foreign bacteria cause upset.

 

[David Tyrer]

Hi guys,

So I have had results back of my prvt Lyme disease panel and the screen shot below shows the results - negative across the board. So back to the drawing board for me!

 

[Merida]

Hi guys,

So I have had results back of my prvt Lyme disease panel and the screen shot below shows the results - negative across the board. So back to the drawing board for me!

David, late to reply, but thinking about your comment. Part of the problem is that the Lyme bacteria manipulates the immune system. ( Kindly told this by Dr. Eva Sapi, researcher, expert) The other problem is that there are so many co-infections : Babesia, Anaplasmosis, Bartonella, more. I watched the You Tube lectures by Dr. Alan MacDonald, Harvard pathologist/Harvard Brain Bank. Then there is the issue of thyroid malfunction - another quagmire for testing and variety of symptoms. Research indicates Lyme Borrelia can attack the thyroid. I tested normal for thyroid, but have so many symptoms of dysfunction. Trying to sort this out. But 2 different docs ( naturopath and an MD ) thought my thyroid was off. But not my infectious disease/main doctor. Oh. Oh. Oh. Big hugs from me.

 

[Issie]

My doc treated me, as I had the red ring and co infections were positive. But it was long after the fact of the bite and for that particular one, it wasn't showing positive. Yet all indications were that it was. Testing is not very accurate. If the immune system isn't in proper spot, it will not show up. Whereas later it will. He said testing couldn't pick up everything. Now I'm doing an antiviral herb that is supposed to take care of Post Lyme syndrome. I still had symptoms after years of treatment. It is thought it can still hide and not be detected and still be there, yet hidden.

Certain virus can actually insert themselves into cells and make them look like self and the immune system not detect. The herb I'm using is Lomatium. (There is a most horrible rash that can happen with it the first time of using. But if you get your liver working well, less chance of having it. I didn't get the rash.) But, I can tell a difference with jt. I was told it would take about 18 months of regular use to eliminate the virus and symptoms. I'm about 5 months into it. I've talked more about it on other threads.

 

[Merida]

My doc treated me, as I had the red ring and co infections were positive. But it was long after the fact of the bite and for that particular one, it wasn't showing positive. Yet all indications were that it was. Testing is not very accurate. If the immune system isn't in proper spot, it will not show up. Whereas later it will. He said testing couldn't pick up everything. Now I'm doing an antiviral herb that is supposed to take care of Post Lyme syndrome. I still had symptoms after years of treatment. It is thought it can still hide and not be detected and still be there, yet hidden.

Certain virus can actually insert themselves into cells and make them look like self and the immune system not detect. The herb I'm using is Lomatium. (There is a most horrible rash that can happen with it the first time of using. But if you get your liver working well, less chance of having it. I didn't get the rash.) But, I can tell a difference with jt. I was told it would take about 18 months of regular use to eliminate the virus and symptoms. I'm about 5 months into it. I've talked more about it on other threads.

Hi Issie ! Thanks for the information. Lyme and co-infections are certainly insidious and cause profound issues in many systems. My blood pressure was stable for my entire life, then about 4 years after the tick bite I started having erratic blood pressure - shooting high, 'white coat syndrome' ( same doc 18 years - didn't have it before bite). Then days when it is normal, too low heart rate ( often in the 50s) I think. Yes found this kind of cardiovascular mayhem in the Lyme literature. So, . . . a quagmire. Hope your protocol begins to help !

 

[Issie]

Me too. It's always trial and error. But I'm hopeful!