I started treating for Lyme and Bart in Nov '08. Not sure when I got infected but was "bad" for at least a year before treatment. (When I got to an LLMD I had brain lesions on MRI, lots of neuro issues/fatigue/brain fog, fibro-like pain, and was barely functioning.)
After 3+ years of abx, I am lots better but still often sick. Biggest lasting issues are fatigue, inflammation, and myofascial pain.
Early this year I decided to stop abx for awhile, as after years on them I started to wonder if my lingering problems were side effects.
I initially felt better off of abx, though not great. But at about 4-6 weeks off abx, I started to notice noxious body odor. I could smell it in my hands and urine the most, and the best description I have for it is that it smells spicy and foul, like a curry sauce gone bad.
Then I started to get a very red flushed face and a lot of head pressure. (Both issues I had regularly earlier in treatment and before treatment.) I am therefore slowly getting back on abx.
The abx I have left over from my last LLMD include factive, tindimax, omnicef and zith. I've started rotating factive/tindimax, as that was the last combo the previous LLMD had me doing.
I'm waiting for an LLMD appt with a new doctor, but still have Rx's from my last LLMD. I was supposed to see the new doc in Jan but the doc had to reschedule after an accident forced them to stop working for a bit.
So I'm kinda of "on my own" right now until I can see the new doctor, and would appreciate any thoughts on my situation (why do I smell, how to best care for myself while waiting for my appt, or other ideas/reactions to this story.)
Thanks in advance.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
| IP: Logged |
I did the same thing you did - take a break off of antibiotics to see if that might be some of my problem.
However, after about 4-6 weeks off antibiotics, I started having the same issues. More flushing, more sweats/chills, more headaches especially on top of head, ear pressure, and sinus - so I know the antibiotics are not the problem.
I started taking my antibiotics again and have resolved that I may just be one of those people whom have to take it for the rest of my life because I am doing all the right things. I'm detoxing, eating organic, staying away from alchohol, sugar, etc.
I've done all the naturals as well as a host of different kinds of antibiotics, but it seems that as soon as I stop - all the symptoms come roaring back in as little as 4 weeks.
I try to stay optimistic, but I was one of those people who only went 9 months before getting treated and I'm still only about 85% most days. I walk around with head pressure and ear pressure everyday with or without antibiotics.
Also, the lyme has really messed me up hormonally too. I have thyroid issues, post-menopausal at 49 years old, and diabetes insipidus all things I didn't have prior to lyme in 2008.
I would see an endocrinologist and see if some of your issues might be hormonal.
I hope you find your answers! Keep looking and don't give up!
- by Connie Strasheim - Townsend Letter - July, 2010
be sure to scroll down past a section of ads that looks like the end of the article. This is a four-page article. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Frequent Contributor (1K+ posts)
Member # 33750
betty 1939 .I have the same issues as you have.I have treated lyme with bionic in germany , I have treated bartonella and had a car accident where babesia and FRY bug came out strongly .
I started biaxin , plaquinil , mepron and cryptolepsis.Only this combo after 3 years has reduced the preasure in the ears and on top of the head. I do beilive this babs /Fry ( as malaria ) bug is the reason for that.Read about it at betterhealthguy.com Last article.
If you have the slightest twitches the fry bug is the main reason.You need to be on the combo for that bug as it seems that some are loaded .In my case the head preasure lifted only on this combo and nothing else did got rid of it before.
Have you tried this combo ? oh just saw you have hemobartonella ( same as my daughter and she has the same symtoms as you have ) .
Posts: 1379 | From disable | Registered: Aug 2011
| IP: Logged |