I met with my llmd again this morning to discuss what im going to follow up with after rocephin.. At first he said i look better so i should take a break from antibiotics.. but i dont feel better!
He wants me to only do zithromax for 4wks by itself.. then he "might" add something else.. i feel so fustrated with him..
i dont feel like he's treating me aggresively enough... he said he wants to do one thing at a time so i dont over herx.. which i understand but i wanted to atleast add something to try hit bart like bactrim or something
Will zithromax do me any good for someone that has neuro lyme?
[ 05-10-2011, 09:29 AM: Message edited by: Nicole2011 ]
Posted by Nicole2011 (Member # 30672) on :
up
Posted by Fuel1212 (Member # 29312) on :
I just met with my LLMD and asked him a few questions. One of which indirectly answers your question. He has Burascano like guidlines he follows.
He said there are 3 stages and or locations for Lyme. Blood, Cellular and Cyst. It is important to have an abx that breaks down the cycles. For example:
I am on Ceftin which covers the blood. I am also on Zithromax, which helps with the cellular level. Last but not least I am on Grapefruit seed extract to help break the biofilm of the cyst form. This opens the colony up for destruction.
I would think without treating at least 2 stages you will not defeat it?
Fuel
Posted by t9im (Member # 25489) on :
From memory there was a study done (maybe Stoney Brook) did some work where one group of patients were treated patients with amoxicilyn (3 weeks) and the other group with zithromax (1 week, 2 weeks placebo).
Both groups were early stage lyme, the zithromax group had 4 times the level of treatment failure.
I think it was Dr. B's guidelines which indicated while Zith is good in the test tube it is not as good in the cell (maybe due to ph levels).
Posted by annier1071 (Member # 28977) on :
I was put on zithromax along with the omincef I am on. I have had 5 months ominicef and two months of zithro in the middle. All I have read about lyme and coinfections is that both are excellent abx for treating lyme.
I had to stop zithro after it began affecting my hearing and severe tinnitus. They were concerned of me losing hearing in the other ear but it was working while I was on it?
I was told to stay only on omnicef for the last month after a very bad herx from rifampin. I was also told that a severe herx is the worst thing for you body. It can leave you with permanent damage.
You are stronger than I am. I am far from begging for somethign to add to my current abx. I am feeling a bit better and too frightened of going through that reaction I had on rifampin. Maybe you are just taking a break in between. Many people take abx in cycles with a break in between. Depends on the LLMD and the patient.
Posted by CherylSue (Member # 13077) on :
How effective is zith for mycoplasma pneumonia?
Posted by laurie sm (Member # 14584) on :
I was on Zith alone at the beginning of my treatment for about 4 months and it did absolutely nothing for me...
You are just at the beginning of your treatment and I think you are asking for too much improvement all at once.
It takes a lot of time. I have been working at this for almost 4 years and many treatments and still don't have my life back.
For you doctor to say you look better is ridiculous! If I had a dollar for everyone who has told me"well you look good" I would be rich.
Good luck with whatever you decide to do and try to be patient. I know it is HARD!!!!!
Laurie
Posted by little_olive (Member # 28063) on :
Zithro is great for neuro Lyme!
But I know taking Zithro by itself for the co-infections (it can treat babs, myco, and bart, probably others i'm not aware of) quickly leads to antibiotic resistance. So I'd be mindful about the coinfections before taking it very long by itself, if it were me.
That said, you're not supposed ot take Rifampin by itself, and I still had to for a whole month! Just like your LLMD, we were pushing the limits to avoid herxing too badly. You just need enough to create a small herx and see improvement; you two need to work TOGETHER so you don't overload your body. Severe herxing can kill.
little olive
Posted by average joe (Member # 26091) on :
Nicole, I notice you are from PA and makes me wonder if this doc is one that I had seen. If he/she is in south central PA feel free to PM me to confirm if it the same person. If you aren't comfortable with that you can post here but only use the docs last initial.
Posted by Nicole2011 (Member # 30672) on :
little_olive- i thought zithromax was only for co infections? i was on zithromax before already for a month before iv rocephin
Posted by jojolaw (Member # 31159) on :
My LLMD just put me on zithro twice a week 600 mgs along with Suprax 400mg every day for four wks. Prior to this 08/2010 and 08/2009 was on Doxy 100mg for only three weeks. Aft each doxy treatment, even though it didn't get rid of the Lyme, I felt great but it took a good month after I was finished it. I see him again on 06/02 so we'll see how I feel but I think fm my personal experience, it takes some time afterwards before you start feeling better. I finished doxy beg Aug and started feeling good end of Sept.
Posted by little_olive (Member # 28063) on :
From what I know, Zithro reaches good levels in the brain, though not necessarily the spinal fluid. So it does treat neuro Lyme. Someone mentioned on another thread that at high enough levels (it can go into the grams, like Ceftin), it becomes bacteriocidal as well as bacteriostatic, so perhaps with high enough levels it might also penetrate the spinal fluid? I have no proof of this, but I know Amoxil won't reach the brain unless at high enough levels, so maybe it works like that.
Bump, for more answers!
Posted by we'll win (Member # 11112) on :
Nicole 2011,
I am no fan of zithro and especially zithro alone. In short I feel it is not effective alone. I think I would try to find a more aggressive dr.
Besides, Lyme treating protocol really calls for combination antibiotic therapy. In between the heavy hitters a cyst buster, like flagyl, should be used.
Not a doc. Just a Lyme vet of almost 21 years.
Posted by jenn (Member # 21687) on :
Zithro did Great for me!! No complaints added Mepron to zith a few month's after doing zithro alone and turned the corner .... Feeling GREAT!
Posted by rmsfnc (Member # 27539) on :
Been on zith alone for a month and feel pretty good. Best I have yet. taking it for Bart and Lyme coverage. previously took Doxy for 8 months with Flagyl pulse for 3 of those 8 months. Relapsed due to suspected Bart infection now taking zith for it.
![[Frown]](frown.gif)