I only have one remaining symptom, and go figure its the one that keeps me from doing anything. AIR HUNGER
I feel like i am breathing through cigarette filters stuffed into my nostrils, or my lungs wont finish expanding to take in enough air, or that the air im breathing is just too thin for me. It drives me crazy, makes me feel like i am suffocating. I have had every respiratory and cardiac test done and its all being chocked up to babesia according to my LLMD. It makes sense, seeing as NOTHING else shows up on tests, and I cant afford the test for babesia so we are just treating it.
My question is as follows. How long does it take to go away? Im on Biaxin (cant take zith) Mepron and just started Arteminisin(sp?) yesterday. Ive been on mepron for about 3 full weeks now, at 2 teaspoons a day. The first week i felt horrible, the second week i felt like my breathing was better than it has been in the last year. (ive been suffering from debilitating air hunger for 9 months now)
I usually wake up feeling fine, the air hunger hits around 5 oclock and goes away around 10 or 11. I have these daily cycles of it. Sometimes i have a 2 or 3 day period of feeling good, then it comes back. I just want to hear some thoughts on this. I dont know if A. its not working B. im continually herxing or C. babesia is cycling and maybe im not doing enough to combat it.
Please any advice is greatly appreciated. Thank you!
-------------------- A tiny bug no bigger than a pimple on your butt can change your life. Posts: 101 | From Southern NJ | Registered: Oct 2009
| IP: Logged |
I had a lot of symptoms and stayed with the Babesia and Lyme treatment for a year.
I am still taking ABX for Lyme because I still feel really sick.
It has been a year and a half total, since I started treatment.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
From Burrascano, page 24:
"The duration of treatment with atovaquone combinations for Babesiosis varies depending on the degree of infection, duration of illness before diagnosis, the health and immune status of the patient, and whether the patient is co-infected with Borrelia burgdorferi. Typically, a three-week course is prescribed for acute cases, while chronic, longstanding infections with significant morbidity and co-infection will require a minimum of four months of therapy. Relapses have occurred, and retreatment is occasionally needed."
I understand that Burrascano is now saying that 5 months is the minimum treatment with mepron (atovaquone) for a chronic babs infection. Many, many people need more than the minimum treatment.
You may even need to increase your dose of mepron. Some take 3 or 4 teaspoons per day.
"Treatment failures usually are related to inadequate atovaquone levels. Therefore, patients who are not cured with this regimen can be retreated with higher doses (and atovaquone blood levels can be checked), as this has proven effective in many of my patients. Artemesia (a nonprescription herb) should be added in all cases."
You are on the right treatment. It is way too early to know if it is working or not. If your doc checks your mepron levels (a blood test) and they are adequate, then the treatment will work.
I understand it takes about 1 month for the mepron level to get to the theraputic (killing) level in your blood. So, you are likely just getting there now.
It is very important that you eat a lot of fat with the mepron. Otherwise, it will not be absorbed, and you are wasting it and your time.
Also, babs does cycle rapidly. So, what you are describing sounds common to me. I don't think you have anything to worry about. You just have to have a lot of patience.
When I treated babs, it made me sick every Friday evening through Sunday evening--a weekly cycle like clockwork. Once we added artimesinin to encompass these weekly "flares," they were reduced to just a number of hours on the weekend. So, this is typical babs behavior when you start treating it. When you don't get anymore flares or symptoms, that's how you know you are done treating it. Nobody can tell you how long that will take. Each one of us is different.
Hang in there. Wish you the best.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Tobein-I am exactly where you are except I am on week 6 of mepron. I was fine (no symptoms at all) until week 3 (like TF said) then BAM I got the suffocation. I know what you are going through and its scary and debilitating. Sometimes I really fear for my life.
I wish I could tell you how long it takes to go away but Im not there yet. My LLMD said that by month 3 most patients feel better but should continue to treat for another 2 months.
Im hanging in there with you!
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
| IP: Logged |
t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
My daughter's experience is we are now enterng month 13 of mepron and zith. Day fevers broke about 7 weeks into treatment, night sweats continued into month 10, air hunger started to improve around same time as night sweats, month 10.
She has Lyme as well as babs (and probably a few other tick borne items we can't test for).
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
The test is not that expensive. I think mine was a little over $200. That way you will know which form you have. Duncani is much more resistant and harder to treat.
I have been in treatment since late November 2010. My air hunger is gone but I still have very low stamina and hot flashes. I have been taking mepron/zithro all that time. Then I added artesunate. Now also taking plaquenil.
I am switching meds soon. I am going to do a round of coartem and then go on malarone/zithro/ palquenil/ artesunate.
What a battle!
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| 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/