Considering STOPPING any Antibiotics

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KeepHope
Regular Member


Date Joined Oct 2008
Total Posts : 222
   Posted 11/14/2008 11:47 PM (GMT -6)   
when do you say ENOUGH IS ENOUGH??
x

Post Edited (KeepHope) : 3/8/2009 12:42:07 AM (GMT-7)


hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 11/15/2008 6:34 AM (GMT -6)   
I guess my question is are you still meditating?

I felt better while off antibiotics. Once I started my memory was shot. Depression set in. I have ups and downs. Mostly downs.

Now I'm on them, and the dizzy spells have stopped, but I'm depressed as hell. I have more energy too on antibiotics.

I'm going to see if that is a hertz.

maggiemoo
Regular Member


Date Joined Oct 2008
Total Posts : 56
   Posted 11/15/2008 6:27 PM (GMT -6)   

 

KeepHope,

I was on ABX for 8 years!  Was it fun, we all know the answer to that, but I hung in there and you do too.  From my own personal expericence I can say it does get better.  Did you see the comment from the doctor who wrote back last week who was well?  I'll pull it up to the top of the discussion list of you to see. 

While I was being treated there was no concept of co-infections so now my lymes is "cured" but I have flaming babesia, so in many ways I feel like I'm starting all over.

But if you were to say "enough is enough" will the infections magically go away?  Could it be that easy?  I wish it was, we have to fight this fight and WIN!  Regain our minds and bodies to be even better than ever and I do think it's possible.

Now, I've given both of us a pep talk! Hang in there and write anytime.

maggie


maggiemoo
Regular Member


Date Joined Oct 2008
Total Posts : 56
   Posted 11/15/2008 6:31 PM (GMT -6)   
KeepHope,
look at the messge: hello lymies from charcotman
maggie

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 11/16/2008 12:14 AM (GMT -6)   
Hi KeepHope! Your name says it all.......!!!! Maybe you could try some of the natural protocols to give yourself a break from the drugs. Your experience and frustration is shared by many lymers. Since there is no "sure-fire" cure that works for all of us, we are left to figure it out ourselves with the help of doctors willing to try also. I think that detoxing is important to help minimize the terrible herxes, and that our immune systems and organs need natural support during treatments. Maybe you can find a naturopath ND or other good natural practioner that can work co-operatively with your MD to help you get through this complicated treatment. I hope things improve for you soon. Best wishes.
bablymers mom

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 11/16/2008 11:41 AM (GMT -6)   
KeepHope:

Hi. I am new here. I was just looking at your signature and the antibiotics you have been on.

Have you ever been on a cyst-busting drug like Flagyl? It is taken along with a conventional antibiotic.

My doctor usually prescibes Minocycline and Flagyl, along with a BP med called Benicar to open up the blood vessels. This allows the abx to penetrate deeper into the tissue and reduces inflammation. The Benicar also can reduce the herxing.

~Kitty

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 11/16/2008 9:42 PM (GMT -6)   
You more than likely cannot get better for good without a cyst-busting drug.
The spirochete hides out in the tissues and the central nervous system where it cannot be touched by conventional antibiotics.
The Flagyl (and there are others) breaks open the cyst, so the regular antibiotics can do their job of killing the spirochete form.
The spirochete can even form a cyst when exposed to antibiotics. It is it's defense mechanism. This is also how the organism eludes the immune system so it cannot always be detected by antibody testing.
Any adverse conditions- exposure to antibiotics or steroids- can cause the spirochete to go into "hiding". It will remain there until conditions are favorable. When you stop the antibiotics for a time, the spirochetes can reform from the cyst and cause symptoms again. This type of relapse would indicate that the bug wasn't erradicated.
I am a microbiologist and this is easy for me to understand. I hope I have made it clear with my explanation.

You need a cyst busting drug.

See page 12 #4 below:

http://www.ilads.org/files/burrascano_0905.pdf

I will start meds on Dec 3 at my follow up to discuss my test results, so I have no personal experience as of yet. I went undiagnosed for 14 years, so I am not sure what protocol my doctor will use. I did meet a man who was sucessfully treated by the doctor I am seeing.

Post Edited (kitty9309) : 11/16/2008 8:47:56 PM (GMT-7)


kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 11/16/2008 10:15 PM (GMT -6)   
I am so glad I made sense! lol

I am not sure if you can add Flagyl to Ketek.

I did find this. It has a good outline on treatment strategies:

http://www.hormoneandlongevitycenter.com/lymedisease/

I would just print out some info that discusses the cyst form and treatment and show/ask your doctor.

Below see page 3, slide on the left says you will need Flagyl: (These are Burrascano's 2008 guidelines)

http://www.lymepa.org/What_s_new__Slides_Sept_2008.pdf

How long have you been ill? Would you mind saying which state you are in? (If not ,I understand)

Have you had a CD57 test done?

ronaldj
New Member


Date Joined Nov 2008
Total Posts : 9
   Posted 11/17/2008 12:35 PM (GMT -6)   
Keephope,

There are other options for lyme treatment like herbals and rife machines. A few years ago I would have never considered such things, but I have tried both herbals and rife and prefer them over abx.

kitty9309
Regular Member


Date Joined Oct 2008
Total Posts : 163
   Posted 11/17/2008 9:21 PM (GMT -6)   
The CD57 test is a blood test. Lab Corp is usually the lab that is recommended.

Just as HIV depletes the T-cell count, Lyme lowers the CD57. It is a subset of a type of white blood cell.

Here is a better explanation:

http://www.anapsid.org/lyme/strickerpanel.html

My doctor only runs it at the beginning of treatment and then after several months. It is not 100% accurate, but gives a general idea of how you are progressing on treatment.

The Lyme bacteria- Borrelia- down regulates the immune system. The Cd57 result reflects this.

ronaldj
New Member


Date Joined Nov 2008
Total Posts : 9
   Posted 11/18/2008 8:49 AM (GMT -6)   
Keephope,

Because rife machines are not FDA approved, doctors are not allowed to presribe them or talk to us about them unless we ask. My doctor knows that I am using a rife machine and I know that he owns one and his family uses it. He used one to recover from lyme. So he supports using them, but has to be careful not to break any laws with his patients.

My doctor still treats my lyme and other issues and monitors my progress. I tell him everything that I want to try and get his opinion first. I would be too afraid to do anything without a doctor approval!!!

ronj

baileygirl76
Regular Member


Date Joined Sep 2008
Total Posts : 123
   Posted 11/18/2008 1:06 PM (GMT -6)   
I have only ever been on Doxy. I feel so much better - are you saying I will never get better with only Doxy??

twingirl
Regular Member


Date Joined Feb 2007
Total Posts : 323
   Posted 11/20/2008 7:14 AM (GMT -6)   
Bailygirl,

Doxy worked well for me too. But it doesn't break up the cyst form. So you may need to go on a cyst buster to get those. Also if you have co infections, you may need something else for thos.e
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