posted
I am treating with antibiotics since 2002 (with some not too long breaks) but Im still unsure if I can generelly say that they make me feel better. And the answer to the question if they help me or not is of course essential for deciding how to go on.
at the beginning of treatment i had temporarily great results with rocephin. but only for a while, then everything came back. when i tried it later again it didnt help so much anymore, i only got gallbladder-pain. so that was that.
i had two antibiotics (tini/flagyl) that definitely made things worse (long term, no herx) and brought me tons of new neuro symptoms.
i also got worse when i started treating lyme, it was with doxy 200-600mg. but this could have been a herx.
and i have dozens of antibiotics where i really cant say if they helped me at all.
symptoms often didnt change much on them. sometimes something changed, but just one symptom switched to anoter symptom.
is it good to stay almost the same on abx (cos i didnt become sicker) or bad (if it doesnt help then why take them)?
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
They are supposed to. I have read, generally but not always, you herx and then improve. So if you progressively get better, then you know it is working but if you stay the same or get worse, it is not and time to try something else.
It is my experience that the bacteria build resistance and for me taking breaks allows them to do that. I was doing well on my abx and decided I needed to take a break so I pulsed four days a week instead of taking them every day. I relapsed in a month and now even though I have gone back to seven days I just keep getting more and more symptoms.
I even added another abx to see if that would help but I guess these drugs are useless now. That is scary because I don't know what else to use.
Treating all the co-infections is also very important because knocking one down allows the others to gain strength.
I understand how you feel but have to ask, what is the alternative? Herbs sure don't work.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I really think (and am finally coming the the conclusion myself, a little late....) that it's so important to effectively treat the co-infections. I felt plateaued after 4 years with my LLMD. Now I just switched and I think I'm going to get very good results (because the new doc diagnosed me with co-infections that my first doc missed!! Yes, I'm ****ed!). Plus I think it's good to have a fresh set of eyes looking at things to get a new perspective.
Also, have you read Dr. Burrascano's 16th edition on Diagnostic Hints and Treatment Guidelines? If not, it is a MUST READ. We really need to learn as much as we can so we can be sure our docs are handling things as well as we'd like. Dr. Burrascano says that if a patient is not improving, you must diagnose and treat co-infections.
Don't forget importance of clean diet, lots of water with lemon, supplements and detoxing. I think when people just do the meds without the full compliment of everything else, their rate of success is rather slim.
Wishing you well, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
I did almost two years of abx then when I heard about an alternative treatment that made sense to me, I went for it.
I used the Bionic 880 for infection control, treated parasites herbally, did lots of detox (Hulda Clark liver cleanse, Dr. Natura cleanse, another other herbal cleanses), got my vitamin D in range, exercise, and eat right. In the end, this got me fully well.
Yes, abx played a role. I think I would have died without them, however, I don't think I would have gotten fully well with them. I think we're all different, what works for some doesn't work for others.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Yes! I felt better after just a day on Doxy at 200 mg 2x/day. Helped me with some brain clearing and some energy.
Note that I was CDC positive w/EM bullseye rash and all more than 20 yrs ago and could NOT get abx out of my PCP. So, my bod was basically abx starved!
Also, I increased my nutritional supplements as per ILADS' Dr. B. 16th Ed. Guidelines for 2 months prior to first doxy dose AND have been on GF Candida control diet for more than 15 yrs.
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posted
of course i read burrascano - i even have memorized every sentence of it. :-) but in my daily lymelife things dont seem as easy as it sounds in his guidelines. its not always: you herx and then improve. not every increase of pain is a herx. sometimes symptoms can get worse on abx and stay.
i know how serious this disease is, but unfortunately in many cases (which includes mine) i am not sure anymore if antibiotics help or just do harm.
this is my conclusion of 8 years of therapy and some symptoms that definitely are long term damage by antibiotics (like flagyl).
of course it is the lyme that turned my life into hell, not the abx. but when i thought i have to try nearly every antibiotic there is cos things cant be worse i was wrong.
quote:Originally posted by nefferdun: I understand how you feel but have to ask, what is the alternative? Herbs sure don't work.
Silver. Argue with me all you want....
I am not well, but finding silver was like striking gold.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Like six, I feel most of us need a multi-pronged approach. Abx, detox and other treatments. A combination of all of these have helped me. I'm still on abx because I still need them.
If you've been sick for very long you may have accumulated a number of infections including parasitic or viral. Have you been tested and clinically evaluted for possible co-infections? I didn't test positive for bart or babs but I had some of my best improvement with a clinical diagnosis and treatment of those 2 infections.
You may have genetic detox issues as outlined in my post here:
I now feel like a broken record when I keep posting about detox, but it was a huge issue for me.
Your thread is very good. I have major methylation issues. I had no clue a few vitamins could start dumping so much toxins. I was impressed. Most effective natural (detox) treatment I have ever done, and I'm still doing it.
Do you know why Klinghardt suggests KPU/HPU treatment (if applicable) before methylation? It just seems to me that methylation would be a safer way of dumping a heavy metal load before shifting more metals.
Considering how much methylation treatment has already helped me, I am interested at getting tested for HPU/KPU some time in the near future.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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quote:Originally posted by Tammy N.: I really think (and am finally coming the the conclusion myself, a little late....) that it's so important to effectively treat the co-infections.
Yes, indeed, Steven! You probably have coinfections that were missed.
I always felt worse on antibiotics, but they got me well!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hi kday, Sorry, I don't know why Dr. K. treats KPU first. I agree with your thinking. It's odd too because I've read in several places that he states that zinc and heavy metals together are so much worse and one takes large doses of zinc for the KPU protocol.
I got high doses of zinc through a defective product and I was already taking the other supplements for the KPU protocol and I have to tell ya, I got very sick. It's been months and I don't feel that my immune system has recovered yet. I'm still dealing with all the heavy metals that were dumped so be very careful with the KPU protocol. It can be very powerful and dangerous.
Just want to mention that the detox thread was started by SpringShowers. I posted about the genetic issues in it because I felt it should be mentioned.
I completely missed Tammy's post about co-infections. sheesh! Guess it can't hurt to hear it over and over since it seems to be missed so often.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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whenever i stop taking anti-biotics, every single joint in my body aches... every single one.
so they definitely do help my joint discomfort... but my main issues are EXTREME fatigue and leg bone pain... and anti-biotics don't seem to help those symptoms at all!
it's discouraging... i don't feel like i'm improving at all!
Posts: 220 | From Kansas | Registered: Mar 2010
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
Speaks of how the antibiotics make you worse before better....
I would not have believed this bug either if I had not lived it. But it is true.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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