Off of ABX but I feel WORSE than when I started - Why?

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hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 6/19/2009 6:00 PM (GMT -7)   
Did ABX stir something up?

Damage something?

Cause me to become dependent on them?

Does anyone ever get off of them for a few months and feel like their old rotten selves?
Bit June 08.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/19/2009 6:09 PM (GMT -7)   
Hoping,

How long were you on antibiotics and why did you get off?
2003 symptoms started;panic attacks,anxiety,heightened senses.
2007 Diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence.
2009 Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start,Mepron,Ultram,Thyro Complex 60mg,Probiotics and supplements


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4304
   Posted 6/19/2009 6:10 PM (GMT -7)   
Hi Hoping,
 
What you are saying is something I have heard over and over again for years from others.  I really don't understand all the scientific reasons for this, but's it a common complaint.  People go on antibiotics, then go off of them only to feel worse and start feeling better once they go back on them.  It's like a vicious cycle. 
 
I think we have become antibiotic-resistant,  just my humble opinion for many reasons.  In any case, it's no secret that I became better using alternative medicine and heavy detoxing after reading Dr. Jernigan's book and using his "healing at home" protocol.
 
Anyway, Dr. J. wrote this:
 
"Some people only feel good if they are taking the antibiotics. This is possibly due to the fact that some antibiotics work by impeding the growth of bacteria without actually killing them. Again we see an unacceptable solution, since this leads to years of dependency upon antibiotics. This is justified by some, due to the relief the treatment provides, even though it is but again simply a drug-induced illusion of health."
 
That statement comes from this article:
 
 
Hope you feel better,
Denise


It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 6/19/2009 7:21 PM (GMT -7)   

Hi hoptingToFindCure.  I am sorry you are feeling bad.

How long were you treated?  What are your symptoms?  Did you have co-infections?  Did you treat until you were symptom free plus at least two months longer?  What does your doctor say?


springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 6/19/2009 7:48 PM (GMT -7)   
This is exactly my fear.  After three years, I am fearful that the dr. will take me off after only two months of antiobiotics (cause he said I should be fine after another month last visit).  I feel so much better while one them but dread going off as I still have so many symptoms.  Of course my stupid WB came back with only two bands but it never was positive to begin with.  I'm sure he's gonna try and use it as an excuse that I'm "healed."
 
Best of luck to you.  How long were you on antibiotics?

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 6/20/2009 3:06 AM (GMT -7)   
Was on for 8 months.

G.I. issues caused me to stop and all the new twitching. Not uncommon. Was feeling great accept for the fact that I had NEW symptoms of foot pain. So if antibiotics actually keep Lyme at bay, why did I get this new thing while being treated. It's a major symptom to have while on major antibiotics that are supposed to palliate and not cure.

Anyways, I have never heard of using antibiotics for palliative care of a serious illness. This is all new to me. I thought antibiotics fought an infection -- not symptoms of an infection that we're not sure were actually able to treat.

I guess that's what LLMDs do. Had I known what I would feel like OFF and that I'm now WORSE -- with headache pressure and fear -- I'd have never started them until I had more definite ideas about all this.

Sorry if I offend the champions of the palliative effect of antibiotics. I just don't think that was ever their intent but then this happens a lot with medicine. The only time people get upset is when someone's treating Lyme disease. Lyme brings out the worst in M.D.s and healthy folks who will never understand.

Should I try another LLMD if I can find one? I really want to be on someone who's goal is to get me into remission -- fast. I will look at Dr. Jernigan, but I bet he isn't taking on anyone new.
Bit June 08.


saxmar
Veteran Member


Date Joined Feb 2007
Total Posts : 670
   Posted 6/20/2009 4:52 AM (GMT -7)   
When I went off abx I reaaly felt worse, lost weight and told my LLMD I felt like I was going through a withdraw.

I went back on and I am still on abx. Feeling much better but afaraid to go off again.

I mostly went off abx to make sure they didn't mask test results. It was it it from that point of view because I got very positive test results to show doubtful non- LLMD doctors.

saxmar

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 6/20/2009 6:43 AM (GMT -7)   

Hi hopingToFindCure.  What other things were you doing during treatment?  Were you eating healthy, getting enough rest, exercising when possible, taking appropriate supplements, doing things to detox?  These are all important.

I think getting another opinion is a good idea.  There are some Lyme doctors who treat with traditional and alternative protocols.


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 6/20/2009 7:00 AM (GMT -7)   
Hoping, I am so sorry to hear this. SO disappointing and unfair!

I'm honestly NOT trying to promote something I don't know enough about, but maybe you should at least ask your Dr about low dose Naltrexone. I got some good reports from the MS board -- they say there are more on the chronic fatigue (or chronic pain?) board. And a friend, told me that a friend w/ Lyme did very well w/ it.

Can't be taken w/ narcotics -- because the high dose is used to get addicts off narcotics and/or alchohol. But if you will read the whole report, it sounds amazing and is amazingly safe!

I am going to ask my LLMD for this first thing! I would like to try it BEFORE any antibiotics, partly because of the cancer curing effects.

Again, I do not make any claims about this drug, and I have no personal experience with this drug. but I believe it is promising and will suggest it for those who are still struggling w/ these diseases and infections.

If anyone out there believes this is not true, I would like to know what they know, because, again, #1: I intend to ask my Dr for it. #2: I want to suggest consideration of trying it to those who are still suffering.

http://www.lowdosenaltrexone.org/


Lyme in NC in 1971? Suspect TBI: Fully engorged tick followed by high fever and tonsillitis. Follwed by , lumps on neck,  chronic tonsillits w/ constant low grade to recurring high (104) fevers, severe unexplained neck stiffness and acute neck pain.   Followed by tonsillectomy, urinary tract infections, miscarriage, appendicitis while pregant, chronic severe back pain. Followed by depression, mild anxiety, mitral valve prolapse, and hypglycemia.  Was this a TBI??
 
Bit again couple of times, lyme suspect bite Mother's Day 2007. Bite, symptoms, lyme specific antibodies on the most lyme specific band of all = 39 IgG.  Still awaiting appt w/ LLMD.


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4304
   Posted 6/20/2009 7:44 AM (GMT -7)   
Hi Hoping,
 
I have no idea if Dr. Jernigan is taking new people as I never been to his clinic and have no idea how that works.  I do know of at least 3 people who have been to his clinic and they stayed for 2 weeks.  I forget how much it costs.   
 
Oh, I'm not promoting Dr. Jernigan, I just happened to get better using his protocol from his book and when I needed advice, I called up the clinic.   When I first started taking his Microbojen I was having problems and I became nervous (but that's another story).   All was fine.  I was also very concerned about his botanicals because they contain 20% grain alcohol and I am a recovering alcoholic so I had to use a different method so I wouldn't get any alcohol into my body.
 
Maybe do what I did?  I bought his book and followed his "healing at home" protocol.   That worked for me, I was really lucky!   His book is really complicated (at least his first book was).  I had to keep placing sticky notes on certain chapters when I was sick as I would get really confused!!
 
Anyway, I know his book is available at this site as well as other interesting information.  You can read about his treatments, etc.   I also signed up to receive e-mails that contain articles and up to date information so I can learn more and help others.   Those are really interesesting too!
 
 
Hope this helps,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


pcpc
Regular Member


Date Joined Feb 2009
Total Posts : 214
   Posted 6/20/2009 8:55 AM (GMT -7)   
Hoping To Find Cure, there are many reasons you would feel worse after stopping antibiotics. Most likely your foot pain was from Bartonella which is challenging to treat. It is IMPOSSIBLE to get better from Lyme when co-infections are still present.

Not sure what antibiotics you did- did you treat for Bart? (my oral antibiotics were not covering my BLO symptoms so now I am doing IV Claforan and bicillin injections- herxing a lot of BLO which is hard but I do think I am making progress).

Also most antibiotics treat only what is in the blood, except flagy which treats tissue cysts. Did you use Flagyl? i am currently doing Flagy on weekends while on antibiotics and I use herbals (Cowden or Zhang) to treat tissue form- grapefruitseed extract also works.

When you go off antibiotics the spirochetes reemerge form tissue cysts and you feel worse (although you may feel well initially). Anyone going off antibiotics needs to stay on tissue herbals for ??years. I do not believe you need to stay on antibiotics for the rest of your life but you should be symptom free for ?4-8 weeks and hopefully have a normal CD57 when you and your doc decide to withdraw-- and you need to withdraw with cyst coverage. This is my opinion anyway

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 6/20/2009 10:00 AM (GMT -7)   
Wow.

THANK YOU PCPC - I wish my doc would have explained that all too me like you just did. I feel like an experiment to my doctor most of the time. You certainly can articulate way better than my own expensive llmd can, but then they are treating so many just like me.

I apparently have Bart. How is it treated?

Thank you SO much. I get so upset as I never have been sick before let alone have to stock up on SO very many ABX. I'm supposed to be on doxy, biaxin, plaquenil and flagyl. It just got to be too much for someone with Lyme to keep up with. I have NO family support to help me along. Quite the opposite. They think I'm nuts. That may be true, but I'd rather be healthy and nuts than ...well, that didn't come out right.

You have given me some courage though.

I wonder if you would mind if I sent you a PM. I really need advice on how to proceed and the unusual symptoms I'm stuck with worry me -- heavy head pressure, creaking neck, and fatigue where I must nap in afternoon -- just 5 or 10 minutes -- but the feeling is overwhelming. I work so I have to find the sofa in the ladies room in the next building and make sure I'm not busted!

I also worry too much -- have a bit of the psychosomatic component involved. And I could lose my job so I'm under stress.

thanks for the guidance either way. I've been thinking of Zhang a lot. I love Dr. Weil and he endorsed it as a means of getting rid of it.



I have a prescription for flagyl but I may not need it since I bet it's just active again. I guess. How can I find out if I need to take ABX to kill the Lyme or if I need to palliate the symptoms I have from it.
Bit June 08.

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