posted
I have had numerous symptoms over the last 10 years but about a year ago I developed what I would call chronic air hunger. What I mean by this is that when breathing I feel a restriction when inhaling and it feels that I cannot get enough air. It sometimes leads to chest tightness.
Around the same time I also developed a stiff neck, pressure behind my eyes, an off-balance feeling, and a weak feeling in my legs (though I can walk fine). I have been down all kinds of paths investigating the air hunger, including all kinds of heart and lung tests.
Most things have been ruled out at this point. I do also suffer from bad atypical reflux. I rarely get heartburn or regurgitation, but instead I get voice and throat issues from the reflux. Initially doctors thought my air hunger was being caused by the reflux so I had reflux surgery.
It has now been over five months and my air hunger has not improved (though some of my throat/voice issues have). I continue to suffer from all the symptoms listed above but by far the worst is the chronic air hunger.
After going down every other road I could think to investigate I am left with Lyme and it's co-infections. Only tests I have had done in this area are the CD57 (value of 62), C4A (value of 472), and Labcorp Western Blot (only had IgG P41 band show up as positive).
So, after all that do you think this is Babesia or one of the Lyme co-infections? I would love to hear from people on here (if they exists) that have have chronic air hunger like this.
Posts: 3 | From Fort Wayne, IN | Registered: Oct 2014
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Dekrator48
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posted
I don't have chronic air hunger, but it is a symptom of Babesia and/or Protomyxzoa Rheumatica.
Babesia is a coinfection of Lyme.
Many people are also being found to have Protomyxzoa Rheumatica.
My adult nephew had it, and 3 other tick borne infections. He was treated and is doing better now.
Your symptoms sure point to lyme and coinfections, so I hope you will find a good Lyme literate practitioner.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Have you had your iron status checked? Anemia from any cause can cause air hunger.
But I would definitely consider babesia as a possibility. The off balance feeling is also a classic babesia symptom.
If you end up treating babesia, I would suggest a slow ramp up on meds. Otherwise you could have a herx type reaction and the air hunger could become a major problem.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Judie
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posted
It sounds like babesia. I never tested positive for it (there are several strains and most labs only test for 1), but my doc did a trial of malarone.
That's the only thing that got rid of the muscle weakness, chest tightness and difficulty breathing.
I either have a false negative test or another form of babesia, but I'm definitely improved and it was immediate.
Good luck. I hope you find a good Lyme doctor.
Posts: 2839 | From California | Registered: Jul 2012
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Lymedin2010
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posted
Do you have the following symptoms?
-You cannot hold your arms up for long & you have to put them down relatively quickly because they burn & feel weak? Same with legs in raised position?
-Does your body burn in various places?
-And the million dollar question. If you move too much or too fast, do you get short of breath quicker? Some times quicker than other times? OR does movement not cause any fluctuations in shortness of breath symptoms?
Posts: 2087 | From NY | Registered: Oct 2011
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Keebler
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- Lymedin2010
Those symptoms you describe fit me to a "T" going way back, before diagnosis. Are they attributed to Babesia, too? (dx with that, along with 2 others in '97) but long before that . . .
inability to breathe with any movement at all . . . most puzzling, though:
I recall being at K-Mart, holding one 4-pack of toilet paper standing in a line of just about 3 people. Maybe it was a six pack of TP, it required me to hug it but not a jumbo pack, just a regular large one, anyone should have been able to manage with one hand.
It was horrendous pain, holding the TP for even a short time. 1979. No doctor would help - over the years for this muscle problem.
years before that, even . . . Roller skating, ice skating, even back in college - tried each once with friends . . . my leg muscles were on fire and could not make any headway, although I'd done this in my youth.
This affirmed my decision not to even think about having kids as I knew I could not even hold a baby at all and, in retrospect, I know now that any child would have been very ill, too, without adequate medical care.
I think I somehow new that. But what a shame, all the way around. This is likely not the only time such happened / happens for those who can't get proper medical assessment / care for tick borne infections.
It would be 1997 when finally diagnosed . . . 18 years after that. And, even then no treatment allowed as the MDs in my state would not believe a trio of positive IGenex tests. One doctor who did sort of believe it would not prescribe mepron, though, "it's just to expensive" he told me. I was on my own, totally, to grasp at straws.
Airports, where they ask you to hold your arms up for a wand check, I could not keep them up and they yelled at me, thinking I was up to some evil deed.
Etc. I've never read about this particular symptom but it is sure nice to piece together some of the more poignant times that made it very clear something was very, very wrong but no one believed me. the pain, burning from hold up arms even for a short time is just beyond words. Who would have ever thought? -
[ 10-07-2014, 09:40 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Catgirl
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posted
Proto (FL1953).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Keebler
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- Catgirl, in response to the original poster or the previous one? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Lymedin2010
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It is best to look to people who were ONLY affected by the organism in question for answers & I think that is where we get answers like babesia, FL1953, & Mycoplasma P & it may just be that or that too.
I have an explanation for all this from my blood microscopy observation & it will be more sinister than one would expect. I am still working on finalizing the video & I will post. I will touch on body pains & shortness of breath as well.
I also have clues from another Lymie that has it worst than I do & I will be looking at her blood & when it all comes together it will be beautiful. Stay tuned.
Posts: 2087 | From NY | Registered: Oct 2011
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Dekrator48
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Good info about Protomyxzoa Rheumatica from Dr C:
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Catgirl
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No, Keebler, my post was in response to Gondore's post, not yours (sorry to hear you went through all that).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Lets assume this is babesia or one of the other co-infections, how should I proceed. I am scheduled to see an LLMD but couldn't get in until April! Because this is so far off and the air hunger is having a very significant impact on my life I would like to be as proactive as possible. I am going to order the Igenex testing (have a functional doc who will sign) and I have been trying Sida Acuta and Arteminisin. Is there anything else at all that I can do? Should I ask my doctor to prescribe some trial meds to see if I herx and if so what meds?
Posts: 3 | From Fort Wayne, IN | Registered: Oct 2014
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Dekrator48
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posted
Gondore,
Scott Forsgren, aka Better Health Guy, goes to many conferences and then posts summaries of the information presented, on his website.
If you go to his site and search for Babesia, Protomyxzoa Rheumatica, air hunger, etc, you should be able to find information from practitioners about these infections and treatment options.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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TF
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posted
If you are willing to travel to the Washington, D.C. area, there is a lyme doctor who can see you in a few weeks.
Let me know if you want the name by sending me a private message. Just click on the envelope icon above my post.
Getting Igenex testing for lyme and all coinfections is a good idea.
If you want to ask your doctor to give you some babesiosis meds, you can read the Burrascano Lyme Treatment Guidelines to see what he recommends for treating babesiosis.
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