posted
I have been having severe respiratory problems with my current relapse of severe neurological Lyme. I've been hospitalized nd put on IV steriods and then on presisone . When they try to triate me off the predisonse they can't. When I get to 15 mg, my breathing and wheezing gets very bad. I am also tking breathing treatments with a nebulizer and two medication and Advair and Singular. Has anybody had this problem? What has worked ? Also I could use a Pulmonary Specialist in South Florida.
Posts: 28 | From Weston, Florida | Registered: Oct 2005
| IP: Logged |
posted
Dear 4lyme, I know what it's like, Lyme has done a number on my respiratory. I've been on so many meds. and the only thing that has worked for me is "Xopenex" in my nebulizer. It's an anti-inflammatory, helps open up your airways. Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
| IP: Logged |
posted
Based on the published advice of a WHOLE BUNCH OF LYME LITERATE DOCTORS I believe you should consider NOT receiving oral and particularly IV steroids. The inhaled steroids should be used as sparingly as possible. IMH and not a doctor O.
Posts: 294 | From nevada | Registered: Sep 2005
| IP: Logged |
posted
That's true about Steroids, Lymies shouln't use them , but I'll tell you, when you can't breath & you know that this particular medicine will work , I use it (sparingly)!
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
| IP: Logged |
Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I have this and had this.
I would have died and will die without antibiotics. I am on oral steroid asthma medication, it helps somewhat,
but the anitbiotics are what work.
I am on the clindamycin and quinine because LLMD thought it may still be Babesia, I had a 128 on the CD-57 Test so he wanted to try this babesia meds again.
I have been on them for 5 days, and things are so so, I am not breathing that well like before.
I was on the Biaxin and flagyl and the breathing was better, but I was not progressing at all like before.
FOr myself, Biaxin and Flagyl for lyme worked for breathing, Azithromycin and Flagyl.
I am now on the Clindamycin and Quinine. I will post if my breathing gets better, but I dont think this is what i need, I think it is still lyme.
Get on antibiotics, strong antibiotics, Flagyl is what helped this VERY much for me.
Plaquenil did not work for me, it made me sick as heck, tried it a few times, never better, just sick as death.
Flagyl made me herx, but always better.
I heard Ketek was good for breathing, I have not done it yet. Why not try this and Flagyl.
Flagyl is/was a must for me.
Minocycline worked ok too, I used it with flagyl, Flagyl was not as effective with the mino as it was with the Biaxin and Azithromycin.
I KNOW what you are going through, I just about died from it while OFF antibiotics. I had the dryness come into the lungs as well, this went
away with lyme treatment, but not without severe herxing.
I HOPE this helps, the breathing issues have driven me almost insane. I was doing ok with my breathing, but the past 2 months it has slowly gotten worse, then full blown.
Either Lyme or babesia. Lyme more so I think.
Take care and will post what happens with me to help you if I can.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
| IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
I concur, a non-steroidal inhalent if possible. Definitely check to see if it's babesia as well. Babs is notorious for labored breathing.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Trish, it sounds like your babs is flaring. there's two very good meds/supps for babs that I didn't see in your regimen. namely, mepron and artemisinin. It sounds as if you've had some sporadic treatment for babs.
The standard initial treatment is 3 weeks on, one week off, then repeat two more rounds. Many LLMD's here use zithromax 1000mg, mepron 2tsp., and artemisinin 3-100mg capsules p-day. My guess is the flagyl is hitting your babs but may not be sufficient to knock it out. Mepron and artemisinin should.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
posted
Another co infection that will cause breathing problems is systemic yeast (in the blood stream. Either way steriods are not good.
Posts: 374 | From NJ | Registered: Aug 2006
| IP: Logged |
quote:Originally posted by 4lyme: I have been having severe respiratory problems with my current relapse of severe neurological Lyme. I've been hospitalized nd put on IV steriods and then on presisone . When they try to triate me off the predisonse they can't. When I get to 15 mg, my breathing and wheezing gets very bad.
BREATHING problems can't be ignored, you guys. "4Lyme"...I hope you don't think we are judging you.
I have to use Advair myself. That said, I do hope you have been TREATED for babesia, as that may be what is causing your breathing problems.
And as someone else mentioned, yeast can be found in the lungs too. Until you get things under control, I would suggest eliminating sugar and simple carbs from your diet.
I sure hope that helps!
Do you have a good Lyme dr?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Air hunger seems to come with the territory with Babesia. Steroids will only suppress an already suppressed immune system. I like my salt pipe. It doesn't completely eliminate the problem but tames it enough so that I can function. If you don't find a way to break the cycle fear is generated (from the feeling of not being able to get enough oxygen)and fear can leads to hyperventilation which can lead to further air hunger.
Sadie
Posts: 115 | From new york | Registered: May 2006
| IP: Logged |
posted
Has anyone tried Spiriva? It is a non-steroidal bronchodilator, fairly new, inhaler. Possibly worth discussing w/ your doc. There are some contraindications, so it would depend on your personal group of medical problems.
"Tiotropium is a novel compound that works through prolonging M3-receptor antagonism.
It is a long acting, specific, muscarinic receptor antagonist, which binds to the muscarinic receptors in the bronchial smooth musculature inhibiting the cholinergic effects of acetylcholine released from parasympathetic nerve endings.
It has similar affinity to the subtypes of muscarinic receptors. It reversibly antagonizes the M3 receptors resulting in relaxation.
Effect is usually within 30 minutes following the first dose and is maintained for 24 hours. It reaches its psychodynamic steady state within one week."
Well wishes,
Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
| IP: Logged |
posted
A salt pipe is a ceramic pipe filled with salt crystals that you inhale. You can google for more information. I bought the pipe that has crystals that last for 5 years.
Sadie
Posts: 115 | From new york | Registered: May 2006
| IP: Logged |
posted
What is glutathione?
Posts: 374 | From NJ | Registered: Aug 2006
| IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
quote:Originally posted by Health: NP40,
3 weeks on, 1 week off? I have not heard this before. I read 4 months nonstop treatment for babs at least.
I cannot afford mepron, and near died mixing artemissin with antibiotics. I had severe heart racing, and dont want to go there again.
I am going insane with all this info out there. I read on here and then consult with LLMD and am just loosing it.
What is right what is wrong, good God, all this makes one a nut.
Get the LLMD together and set the dam record straight.
Trish
Hi Trish, you'll get variance from different LLMD's on pulsing of meds, some do, some don't but they both seem to be effective. The week off during babs treatment is to allow for detox and to allow the artemisinin to regain it's potency.
There's evidence that art is not absorbed as well after several days of continuos use but by taking a break it allows the absorption to be reestablished. Mepron is pricey as is malarone. Plaquenil is a much cheaper alternative.
The heart racing was a definite herx from the art. Art is very potent against babs. May want to start slow with art, maybe 100mg p-day and then slowly ramp up to 300mg p-day. There's evidence that art will open cyst form of Bb as well. It's my personal belief that it does and can also work against bartonella and it's definitely an anti-parasitical. Hence, the massive herx's.
Babs herx's are some of the worst, no doubt. Expect heart racing, palps, chest pain, sweats. The four months total of babs treatment is correct, however, you may want to give yourself a break now and then for detox or if the herx's get too bad.
I'd definitely try to slowly add the art into the mix though. It's mucho goodo against babs. I'd also probably add garlic to thin the blood a bit so the meds work better, plus it keeps down yeast.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
my original experience with breathing problems came when the air i was forced to work in was moldy and also polluted with guano ( a combo of bird and bat feces ). this guano stuff can lead to histoplasmosis. anyway-i was a lymie for 20 yrs or more when i got into this environment and at age 50 was dx with asthma for the first time in my life and then also chronic bronchitis and copd. i had to take a bunch of drugs-including steroids-which was really hard for me mentally-cuz i know about steroids and lyme...but when you can't breathe...your priorities change. my llmds deferred to the pulmanary specialist and the p spec respected the llmds. eventually i got better-but not until i got out of the environment. and did a lot of detox stuff. i am ok now...but have to be careful about chemicals and molds etc.
EXCEPT...recently, i started treating a sinus ifection with cipro and some breathing problems are coming back
i also have been having trouble getting off abx since a cellulitis and hospitalization in july. two days off abx and i get fever...head pain...mucous...and now coughing and shortness of breath.
SO...i am wondering what is going on. seems like cipro is stirring things up. any othe experiences?
oh-foggy me...main reason i am writing is to suggest all of you with these breathing problems be sure your air is clean..no mold, no chemicals.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Yes, I've also heard that glutathione with a nebulizer works great. I think McDuff Labs has all that is needed but you need a doc's RX to purchase.
Sadie
Posts: 115 | From new york | Registered: May 2006
| IP: Logged |
posted
Cipro treats Bartonella. Some people with bartonella have had breathing problems.
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic