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What are YOUR prominent symptoms?
Just curious as to what ya'lls most prominent symptoms are. If you could change 6 of your symptoms, what would they be? Trying to figure out which of my symptoms are likely due to Lyme associated infections or what may have been caused by something else..
Anyone get vision issues? If so, to what degree? What about GI issues? Anyones hair falling or thinning out? I'd appreciate any specific details!!
Thanks!
Anyone get vision issues? If so, to what degree? What about GI issues? Anyones hair falling or thinning out? I'd appreciate any specific details!!
Thanks!
Make sure you tell your doctor about the shortness of breath. You want that in the file.
I believe that glutathione helps with oxygenation. You might also consider some natural detoxing supplements, as that helps reduce oxidative damage. I take Vitamin C, alpha lipoic acid, Quercetin, chlorella, arginine, N-Acetyl Carnitine, Calcium, and a little Zinc.
Even if it doesn't help the air hunger, you'll feel better.
I believe that glutathione helps with oxygenation. You might also consider some natural detoxing supplements, as that helps reduce oxidative damage. I take Vitamin C, alpha lipoic acid, Quercetin, chlorella, arginine, N-Acetyl Carnitine, Calcium, and a little Zinc.
Even if it doesn't help the air hunger, you'll feel better.
Thanks Ricobord!
I can hardly do much of anything without being short of breath. Some days are worse than others. I just try to avoid conversation for the most part. My oxygen saturation typically runs 99-100%. So far I haven't got a reading of less than 99% when tested as the Drs office. I thought about getting a pulse ox just to keep track of my POTS, which is really bad at times.
I am not sure what is up with my throat. Feels like my throat is closing in on me. Some days are worse than others on that too, but it just seems odd. Anyone hear of anything of the sort relating to TBIs? It has been getting worse for about a year or so. I know it is not thyroid related.
And thanks cave for that additional info!
I can hardly do much of anything without being short of breath. Some days are worse than others. I just try to avoid conversation for the most part. My oxygen saturation typically runs 99-100%. So far I haven't got a reading of less than 99% when tested as the Drs office. I thought about getting a pulse ox just to keep track of my POTS, which is really bad at times.
I am not sure what is up with my throat. Feels like my throat is closing in on me. Some days are worse than others on that too, but it just seems odd. Anyone hear of anything of the sort relating to TBIs? It has been getting worse for about a year or so. I know it is not thyroid related.
And thanks cave for that additional info!
I started getting SOB (shortness of breath) and figured it was Babesia since I knew I had it (and had treated if.)
The SOB got worse and worse until it was so bad that I wound up in the ER with pulmonary embolisms! Which is definitely life-threatening.
So, not everything is Lyme, although it sure seems like that at times!
The SOB got worse and worse until it was so bad that I wound up in the ER with pulmonary embolisms! Which is definitely life-threatening.
So, not everything is Lyme, although it sure seems like that at times!
From what I understand, chronic Lyme can interfere with the body's ability to use oxygen properly. Lyme can cause shortness of breath and a feeling of not getting enough oxygen.
But Babesia is infamous for causing air hunger and an inability to get a satisfying breath.
Since I seem to have both Lyme and Babesia caused breathing problems, I've had a rough time of it. There's the inability to get a satistying breath, and then there's the constant breathiness, like my lungs are two sizes too small.
My breathing problems got worse when we started treating the Babesia, but only after nearly a year into Lyme treatment. Anti-Babesia herbals early on didn't have any noticeable effect on me. But a year later when I tried some again, the effect was bad. I had terrible gasping for breath at times. I had to be very careful to start with tiny doses of these natural treatments.
I read in other forums that this isn't uncommon. The LymeMD blogger describes bad Babesia herxing. Another patient said something along the lines of, Babesia gets nasty when you pick on it. I was worse for 8 months after starting meds for Babesia. I've even had the desperate gasping similar to what post-Polio patients get. Only after a year did my air hunger noticeably improve.
My breathiness got really bad with my recent relapse. Sometimes people can barely understand me and the best I can do is whisper. I sound like someone with a bad case of emphysema. Clearly, it's a different problem than the air hunger. I think it's a combination of Bartonella and Lyme. A bit of a medical mystery at this point. If only "mainstream medicine" would take these illnesses more seriously, they could study me to figure out what's going on. Maybe it would help find a better treatment.
If you're having trouble feeling like you're getting enough oxygen, get a pulse oximeter to check your oxygenation levels. Mine have always been 96-99%, even as I'm gasping for breath. As a result, no doctor ever offered me oxygen. I wish I'd insisted on trying it. I suspect I would have felt a lot better with it.
You might also consider trying some anti-Babesia herbals to see if you have a reaction. Does your doc do herbals?
But Babesia is infamous for causing air hunger and an inability to get a satisfying breath.
Since I seem to have both Lyme and Babesia caused breathing problems, I've had a rough time of it. There's the inability to get a satistying breath, and then there's the constant breathiness, like my lungs are two sizes too small.
My breathing problems got worse when we started treating the Babesia, but only after nearly a year into Lyme treatment. Anti-Babesia herbals early on didn't have any noticeable effect on me. But a year later when I tried some again, the effect was bad. I had terrible gasping for breath at times. I had to be very careful to start with tiny doses of these natural treatments.
I read in other forums that this isn't uncommon. The LymeMD blogger describes bad Babesia herxing. Another patient said something along the lines of, Babesia gets nasty when you pick on it. I was worse for 8 months after starting meds for Babesia. I've even had the desperate gasping similar to what post-Polio patients get. Only after a year did my air hunger noticeably improve.
My breathiness got really bad with my recent relapse. Sometimes people can barely understand me and the best I can do is whisper. I sound like someone with a bad case of emphysema. Clearly, it's a different problem than the air hunger. I think it's a combination of Bartonella and Lyme. A bit of a medical mystery at this point. If only "mainstream medicine" would take these illnesses more seriously, they could study me to figure out what's going on. Maybe it would help find a better treatment.
If you're having trouble feeling like you're getting enough oxygen, get a pulse oximeter to check your oxygenation levels. Mine have always been 96-99%, even as I'm gasping for breath. As a result, no doctor ever offered me oxygen. I wish I'd insisted on trying it. I suspect I would have felt a lot better with it.
You might also consider trying some anti-Babesia herbals to see if you have a reaction. Does your doc do herbals?
Thanks so much everyone!
My symptoms are all over the place! I have no clue how I will feel from one day to the next. Sometimes even one hour to the next. And I have no idea what coinfections I may have.
I completely understand the air hunger Ricobord! It's like it takes effort to speak sometimes. I have never smoked a day in my life, and it's like everything I do is just so exhausting as I am so short of breath. I am growing extremely concerned for my vision though. Not sure why it seems so much worse since I have been on the Plaquenil. It doesn't seem possible that I have been on it long enough to cause any issues, so I am not sure what is up with that.
Have ya'll tried cranberry juice for UTIs? Not sure if it works. But maybe a preventive measure.
My symptoms are all over the place! I have no clue how I will feel from one day to the next. Sometimes even one hour to the next. And I have no idea what coinfections I may have.
I completely understand the air hunger Ricobord! It's like it takes effort to speak sometimes. I have never smoked a day in my life, and it's like everything I do is just so exhausting as I am so short of breath. I am growing extremely concerned for my vision though. Not sure why it seems so much worse since I have been on the Plaquenil. It doesn't seem possible that I have been on it long enough to cause any issues, so I am not sure what is up with that.
Have ya'll tried cranberry juice for UTIs? Not sure if it works. But maybe a preventive measure.
About UTIs------ I never got UTIs while on antibiotics, well many once in 15 years. After I had to go off abx (due to the state I live in) I started getting them a lot. I finally dug up a PubMed article that addressed frequent UTIs in 'senior women' and that they were prevented by 250 mg amoxy a day. I showed to my doctor and he agreed to rx it.
That worked! No UTIs for 2 years.
That worked! No UTIs for 2 years.
Elleon - I have found surprisingly strong herx reactions to anti-Babesia herbals, so I have rotated through them in my year+ of treatment for Babs. I've hated the antibiotics for it. They made me sleepy, dizzy, and sullen.
A year ago, Clindamycin made my hair turn straw-like and fall out. I'm on it again (a higher dose this time), and it eased my air hunger to the best its ever been and so far, my hair isn't falling out. I can completely understand how some people would choose the natural route to treat Babesia.
Ephedra - My worst and most persistent symptoms have been fatigue, breathing problems, brain fog, rib pain, and GI problems. I've had vision issues, but the floaters and sparkles are long gone. The blurry spot in my right eye got better, but then worsened with a big Bartonella relapse. One day, it was a blind spot for a minute or two. It has calmed down with Rifampin and anti-Bart herbals. I still have it.
I'm still very breathy when I talk with air hunger on and off. It's like I don't get enough volume of air unless I consciously take a deep breath (which I can do now, after 2 1/2 years of not being able to). My doc thinks the breathiness is neurological, which would make Lyme or Bart (or both) the primary culprits. No doctor can explain it, so my breathing difficulty is quite unusual.
I also took Levaquin for a while and I felt better on that drug than any other drug I've taken. I thought it took care of the Bartonella after over 2 months on it, but the Bart relapsed about a year later. I had to stop the Levaquin as I got sharp pain/cramps in my Achilles heel, the most common first place to feel pain from this class of drugs.
A year later, I took Levaquin again for 5 days for a UTI. By the 3rd day, I had intermittent terrible pain in my right foot, which my doc said was the tendon that attaches on the side of the foot and runs underneath it. The Levaquin worked very nicely on the UTI. I felt much better on it. But it's clear I can't take it again without risking tendon damage.
Cipro wrecked my gut within 2 days. That took me a month to recover from. I will never touch Cipro again. Both have a "black box" warning from the FDA for the permanent damage they can cause. They have an extra fluoride molecule that enables them to penetrate human tissue to get to the infections within.
I read a study on biofilms that said this class of antibiotics are the ONLY ones that readily penetrate biofilms, which is why they're popular for UTIs. (UTIs persist in biofilms, as does Lyme.) Since biofilms are made with collagen as an ingredient and tendons are, too, I am guessing that what makes these drugs good at penetrating biofilms also makes them good at penetrating tendons and in some, permanently damaging them.
It's really a bummer, as biofilms are probably the reason that so many late stage Lyme patients relapse after treatment. Pathogens hide out in biofilms, safe from antibiotics and the immune system, and then emerge to cause symptoms again. We need researchers to develop an antibiotic that will penetrate biofilms without damaging other tissues.
User beware when it comes to Levaquin & Cipro. Most patients are okay on them, but a few end up with permanent damage and deeply regret taking them.
A year ago, Clindamycin made my hair turn straw-like and fall out. I'm on it again (a higher dose this time), and it eased my air hunger to the best its ever been and so far, my hair isn't falling out. I can completely understand how some people would choose the natural route to treat Babesia.
Ephedra - My worst and most persistent symptoms have been fatigue, breathing problems, brain fog, rib pain, and GI problems. I've had vision issues, but the floaters and sparkles are long gone. The blurry spot in my right eye got better, but then worsened with a big Bartonella relapse. One day, it was a blind spot for a minute or two. It has calmed down with Rifampin and anti-Bart herbals. I still have it.
I'm still very breathy when I talk with air hunger on and off. It's like I don't get enough volume of air unless I consciously take a deep breath (which I can do now, after 2 1/2 years of not being able to). My doc thinks the breathiness is neurological, which would make Lyme or Bart (or both) the primary culprits. No doctor can explain it, so my breathing difficulty is quite unusual.
I also took Levaquin for a while and I felt better on that drug than any other drug I've taken. I thought it took care of the Bartonella after over 2 months on it, but the Bart relapsed about a year later. I had to stop the Levaquin as I got sharp pain/cramps in my Achilles heel, the most common first place to feel pain from this class of drugs.
A year later, I took Levaquin again for 5 days for a UTI. By the 3rd day, I had intermittent terrible pain in my right foot, which my doc said was the tendon that attaches on the side of the foot and runs underneath it. The Levaquin worked very nicely on the UTI. I felt much better on it. But it's clear I can't take it again without risking tendon damage.
Cipro wrecked my gut within 2 days. That took me a month to recover from. I will never touch Cipro again. Both have a "black box" warning from the FDA for the permanent damage they can cause. They have an extra fluoride molecule that enables them to penetrate human tissue to get to the infections within.
I read a study on biofilms that said this class of antibiotics are the ONLY ones that readily penetrate biofilms, which is why they're popular for UTIs. (UTIs persist in biofilms, as does Lyme.) Since biofilms are made with collagen as an ingredient and tendons are, too, I am guessing that what makes these drugs good at penetrating biofilms also makes them good at penetrating tendons and in some, permanently damaging them.
It's really a bummer, as biofilms are probably the reason that so many late stage Lyme patients relapse after treatment. Pathogens hide out in biofilms, safe from antibiotics and the immune system, and then emerge to cause symptoms again. We need researchers to develop an antibiotic that will penetrate biofilms without damaging other tissues.
User beware when it comes to Levaquin & Cipro. Most patients are okay on them, but a few end up with permanent damage and deeply regret taking them.
One of my first symptoms was my hair was falling out like crazy! It was everywhere. That has calmed down since I started the antibiotic.
I only ever had a few major symptoms. Burning pinpricks of pain all over my body (these have completely diminished since starting doxy). Pressure at the base of my skull with dizziness (I believe this is Babs).I am doing a natural protocol for Babs (please no criticism on this) and this symptom is now almost completely gone.
Finally, my biggest and most annoying symptom is severe pressure in the roof of my mouth and the bridge of my nose. This has not diminished at all and I don't know what's causing it, Lyme or a co-infection.
I only ever had a few major symptoms. Burning pinpricks of pain all over my body (these have completely diminished since starting doxy). Pressure at the base of my skull with dizziness (I believe this is Babs).I am doing a natural protocol for Babs (please no criticism on this) and this symptom is now almost completely gone.
Finally, my biggest and most annoying symptom is severe pressure in the roof of my mouth and the bridge of my nose. This has not diminished at all and I don't know what's causing it, Lyme or a co-infection.
BOTH Cipro and Levaqun. To show how dumb I am after I took Cipro my test came back "no Bart" Then the next month it showed "Bart". Then back again, then back again.
So I was put on Levaquin and the pains got even worse! I can't remember how long I stayed on Levaquin but maybe a month or more? (More evidence as to how dumb I can be.)
Still no Achilles heel tendon problem. (Liars!)
But I do know of people who just love it, had no problems with it and eliminated their Bart (if that can be believed, in the final analysis).
They both deserve that Black Box warning. Or pulled----- since surely there might be other drugs that could do the same thing?
I hope you will benefit by molecular and genetic medicine when it becomes the 'thing'. I probably won't live that long. Some of the problems with side effects etc may be overcome then.
So I was put on Levaquin and the pains got even worse! I can't remember how long I stayed on Levaquin but maybe a month or more? (More evidence as to how dumb I can be.)
Still no Achilles heel tendon problem. (Liars!)
But I do know of people who just love it, had no problems with it and eliminated their Bart (if that can be believed, in the final analysis).
They both deserve that Black Box warning. Or pulled----- since surely there might be other drugs that could do the same thing?
I hope you will benefit by molecular and genetic medicine when it becomes the 'thing'. I probably won't live that long. Some of the problems with side effects etc may be overcome then.
Wow, thanks for those details! I would have to refuse that medication if it comes down to it, since it always seems like I always get the unfortunate side effects. So many others to choose from.
So you think the cipro caused it? And not the Levaquin?
So you think the cipro caused it? And not the Levaquin?
"Levaquin and Cipro left you with pain, as in it didn't stop when you quit the medication?"
Oh, yes! there are many people who report that--- a lot of class action suits with that mentioned.
When I started Cipro I almost immediately started feeling pain where I'd never felt it before in my body---- and NOT in the Achilles, as doctors are fond of warning you about! Hard to describe, but as if every tendon in my body started hurting except the Achilles!.
I put up with it under the theory of no pain, no gain. It wasn't a herx, in the normal sense.
The strange thing though, was that bicillin, taken quite a while after that, diminished those pains while I had my remission of several years length. It doesn't make any real sense, that I can see but it happened.
Now, since I can no longer get bicillin, those pains are back.
.
Oh, yes! there are many people who report that--- a lot of class action suits with that mentioned.
When I started Cipro I almost immediately started feeling pain where I'd never felt it before in my body---- and NOT in the Achilles, as doctors are fond of warning you about! Hard to describe, but as if every tendon in my body started hurting except the Achilles!.
I put up with it under the theory of no pain, no gain. It wasn't a herx, in the normal sense.
The strange thing though, was that bicillin, taken quite a while after that, diminished those pains while I had my remission of several years length. It doesn't make any real sense, that I can see but it happened.
Now, since I can no longer get bicillin, those pains are back.
.
Thanks cave!
Figured I would have got more responses by now. Must be a tough question. I really need to figure this out!
You said "can't isolate them to Lyme or co's", what else could it be?
Levaquin and Cipro left you with pain, as in it didn't stop when you quit the medication?
Figured I would have got more responses by now. Must be a tough question. I really need to figure this out!
You said "can't isolate them to Lyme or co's", what else could it be?
Levaquin and Cipro left you with pain, as in it didn't stop when you quit the medication?
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