I've been at this for about a year and have never been able to get more than one kind of antibiotic in at a time due to sensitivites. Has anyone else experienced that? I'm also getting worried that the bug may become resistant being only on one at a time :s.
I have had improvement but I'm still a little worried. I was initally on 3 months baxin/tini when I started and was herxing like crazy but tolerated it. Then I changed doctors since the one in my area was retired and I went to another. He was very aggressive with treatment and I didn't do as well. Always complications and side effects.
Just finished up 2.5 months of ceftin did generic for first 2 months were slightly old and yellowed but had no problems. Went to refill my prescription and got name brand sealed from the manufacturers pills. After the third pill my brain started racing and I was having repeated music in my head. Tried to contact llmd but you speak with NP or else you pay to speak to him directly. They said keep going which I did then 2 weeks into it it was driving me nuts and they couldn't tell me at that point whether it was a herx or to stop. Do he stopped me on antibiotics.
Now I was off for 10 days and starting up again today. I'm frusturated and feel like I'm not taking care of this correctly. Scared of antibiotic resistance and resistant bugs I'm thinking about it all. Has anyone else had this problem? By the way I was positive for rmsf and ehrlichia on top of Lyme. Treated with doxy.
Posts: 12 | From Canada | Registered: Sep 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- What kind of liver support are you doing? That is often the key to being able to better tolerate treatment.
A gluten-free diet also helps. More about self-care and support methods:
posted
Musical hallucinations I can tell you is common in Lyme patients. More common in women. I'm a male and I have this Phenomenon. Have had it over three years but it is better. More common also with low CD-57 scores. There is all kinds of info on google if you search musical hallucinations/lyme disease/cd57.
PS: I wouldn't be concerned about "Scared of antibiotic resistance and resistant bugs." I take breaks all the time and so do others. My doc tells me not to worry about it. Don't let this concern you either it just adds to stress.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Magnesium and fish oil can decrease the NMDA over-excitability that often causes musical hallucinations.
Be sure to avoid aspartame and MSG. Google for all those names it hides under. Even a trace is toxic and will cause a neuro-toxic hyper reactivity.
Adrenal exhaustion (common to lyme) causes increase in the NMDA excitability patterns.
If tinnitus is at all involved, as is often the case, see thread below.
Fans and motors, even within a block or two, can trigger musical hallucinations, which - then - are not really hallucinations at all. Often that word is used when it's really a kind of tinnitus (which can be nearly any sound, buzz, whirl, etc.).
Musical hallucinations can also be a memory in our brain that is stimulated by all the toxic activity from lyme. But, really, every day, "normal" people can get musical hallucinations of varying degrees.
If very troublesome, a LL neurotologist should be consulted. It's best to get a referral from one's LLMD for any ear specialist, though as many are unfamiliar with the complexity of lyme and, while not everything is from lyme, it is best if they about it so they can best sort things out.
Liver stress also can contribute to musical hallucinations - and also to any level or degree of seizure activity (to which musical hallucinations can be connected). Liver support is discussed in the articles and books in post above. Also more links about liver support here: -------------
Specific for LYME patients - lots of details about ears and what can help:
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