I just saw my LLMD yesterday for 3rd visit. I have some questions about meds and symptoms.
I have been on malarone 250/100 x 4 daily as well as zithromax 500 mg daily.
My lyme symptoms have been creeping back since going off doxy around Dec. 21.
I am to add bactrim DS twice daily as well as Flagyl 250 mg at one time a week.
I am scared to death of the flagyl!!!!! I know most of you start off with very, very small doses of flagyl.
Also noted that I am on my second month of malarone and zith. My LLMD feels that one month should have knocked out the babs.
He said very few people need a second round. I am still having night sweats and air hunger, however the air hunger is slowly getting better.
He said that if this hasn't resolved by the end of the second treatment, I probably didn't have babs at all.
This really scared me. What else could be causing my air hunger. Pulmonary function tests, cardio work ups, and everything else was normal.
He said that malarone was the best for babs and that at 1000 mg a day should eradicate babs in one month. This is info from a pharmacist my LLMD treated for Lyme.
As I have seen some improvement with air hunger, could I suppose I am one of those "very few" that need additional treatment?
Also tested positive for yeast yesterday despite diflucan 2x a week and yeast free diet.
Am to take diflucan 200mg a day for 5 days.
Also when I finish my second round of malarone/zith am to start back on doxy 300 mg a day with bactrim and flagyl.
Any advice is appreciated. I don't go back to see him for 6 weeks.
Thanks for your consideration.
Geneal
Posted by Geneal (Member # 10375) on :
Dear Northstar,
Thanks for the response. I forgot to add that I also am to be treated for Bart as well.
When I get to my LLMD's office, the first thing they ask me to do is swab the inside of my mouth real well with this long q-tip.
I know they look at a smear on a slide under a microscope to look for yeast.
Last month I was clear. This month I had yeast with two plus signs.
The zithromax must be compromising my system more than I thought.
Thanks for the support re: air hunger. I do get spasms in my diaphragm and never really considered neurological involvment as the cause.
That makes me feel better. Although I have had several periods in the last few days that I realized that I haven't thought about getting a good breath.
This is the first time since September that breathing hasn't been on my mind all day long.
I pray that this is just all related to Lyme and co-infections and not something else.
Although my breathing difficulties were of a sudden onset and not something gradual of nature.
It also concurred with all of my Lyme symptoms as well.
Thanks again for the response and info. I do feel a little better about the flagyl.
Geneal
Posted by LymeLaura (Member # 6624) on :
I ended up needing five months of malarone to finally get reid of the babs symptoms. This was after 2 months of mepron (which I did not tolerate very well.
I took the malarone with bactrim which seems to be a very good drug for my lyme symptoms.
Posted by BugBit (Member # 7829) on :
In October I started with one month of Mepron. In November I started with ZithroMax and Mepron both and have been taking both since. Today I will pick up my last bottle of Mepron and my last bottle of Zithromax.
For me, generic Zithromax (Azithromycin) does not work at all. I cannot tale Azithro - it is like a sugar pill to me so I have to have the real Zithromax at about $550 a bottle, my co-pay when I am in the donut hole is about $140. Mepron is $800 a bottle and in the donut hole, my co-pay is about $200. I just don't have that kind of money on SSDI as my only income.
They are very expensive and will put me very close to the donut hole in Medicare insurance plans already, at the first of 2007 for just my final treatment which will happen in Februray as I am picking up my meds today the 25th of Jan.
The air hunger for me, went away when I took Augmentin XR a couple months before I started the zithro and the Mepron. I took the Augmentin for two weeks and it was gone, has not come back. Again, I have to take the real thing and the generics simply do not work for me.
I am suffering severe sweating and do not sleep more than two or three hours at a time/night, I sleep a few hours, am awake a few, sleep a few - it is all I do all day. Turn on heat, turn off heat, dress, undress, sleep, shower the sweat away - it is all I do.
For some reason I just cannot maintain body temperature. When I take my temp the thermometer is usually around 96 degrees. I never get to 98 degrees. Once in a while I get to 97 and then I feel pretty good.
When I go out to buy groceroes, I sweat so much people look at me funny. I just drip every couple of hours for a while, then I freeze and then I drip sweat again. So for three months I have been doing the Mepron/Zithro, will do one more month and then I am done.
This is what Burrascano and Striker recommend for Babs so I too don't think I had babs as I have improved a little, but not much.
As I sit here now, my face is hot and red and I am starting to sweat. In a bit I will shower and grocery shop for the weekend and pick up my meds and then sleep some. I have been sleeping 4 hours lately. Sleep 4 hours, awake 4-6 hours, slep 4, like that - it is just miserable.
Fortunately I am not having the yeast problems you seem to have but when I do get yeast, I get so ill it is hard to discern what is going on. I take Fuconazole (Diflucan) once a week or sometimes twice a week (150mg) and that seems to keep things under control, but then I also eat plain yogurt every day and I drink Kombucha (from the health food store) and plenty of probiotics. Good luck, this is miserable stuff. *Bit*
Posted by lou (Member # 81) on :
If you read previous posts about babesia in the archives, you will find that many people need more treatment than your doc thinks. Maybe you should have a blood smear done at Bowen, to look for it. They can still miss it if it is a low level infection, but this would be better than an antibody test.
You could also have a pcr done at MDL lab, but there are multiple kinds of babesia and this test will only find what it is looking for, not all kinds. This is why blood smear can be better, since it will be species independent.
The primate center in LA found WA-1 in animals, suggesting that maybe this type has been transferred with animals from a west coast center. And it may have spread in the environment, so you can't count on only having Babesia microti to look for.
Posted by BugBit (Member # 7829) on :
yes, I have had two full sets of test for Babesia and both come up negative. My LL Nurse says they can only look for two out of hundreds so the tests are really pointless. We have no LLMD where I am, tho I am contacting Dr K in Apache Junction near Phoenix.
Bowen is not Medicare approved and I believe a research lab and very expensive.
I don't have the $$ and now that I am going into the donut hole in a month or two, it additional cash outlay will be an impossibility - for me, but in general I appreciate the good idea. *Bit*
Posted by lou (Member # 81) on :
I stand corrected. They are not closed but not currently testing for babesia, ehrlichia,etc. Don't know why...takes too long to scan upteen fields on the scope....not cost effective???? Anyway, they are working on a new babesia test and will have info on a new website in a couple of weeks.
This was a great service they were performing, since no one else in the U.S. is routinely doing blood smears commercially for blood parasites. Don't know of anyone else you could go to immediately. Maybe wait and see what the new babesia test is like.
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