LymeNet Flash: antibiotics more harm?

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Posted by cigi (Member # 6600) on :

Does anything think that the antibiotics did or is doing more harm than good? I'm fried on rocephin after 6 mos. relief better in the middle of treatment for 1 mo. thank God but feeling like this, you can't help but wonder. I know it's supposed to be good when you feel bad because it's killing the keets, but what about losing yourself in the process and docs don't know what to do next? (LLMD and psychiatrist) Some different combos have been used - my doc still trying but I think I should break and see if I can salvage any of my life back. My doc says to keep going. I take acidopohilus,nystatin and milk thistle.

Thanks - God bless,
Cigi

Posted by Monica (Member # 224) on :

I don't think antibiotics do more harm than good after what I've seen of this disease and what it can do to the human body.

However, Rocephin is powerful stuff. My friend's husband is the Quality Control Manager for this drug, and when he heard I'd been on it for 2 1/2 months he couldn't believe it. (He doesn't know much about LD )

I lost my gallbladder to Rocephin. It helped me, but I quickly relapsed after going off it. My LLMD now is treating me with orals because my insurance company would not pay for the 4 -6 months worth he thinks I would need.

Only you know how you feel. You and your doctor should discuss alternative medications, I think, since you cannot stay on Rocephin forever.

[This message has been edited by Monica (edited 18 June 2005).]

Posted by Melanie Reber (Member # 3707) on :

Hi Cigi,

Rocephin especially can really pack an intense emotional herx...no fun at all!

Are you taking any other ABX in conjunction with the rocephin? A cyst buster?

My doc is of the opinion (and I have found this to work well for me)...that a drug ``holiday'' is required after several months of meds to give your body a chance to clear away the effects of the drug and detox. The length is determined by how you are feeling. Usually one to three weeks.

I did rocephin for about 5 months, but when I plateaued (no more noticeable changes); it was time to move on to something else. Yes, you need to keep going, but there are many combinations to try out, so don't lose hope, OK?

You may also want to ask about a pulsing protocol, so you don't continually fell rotten.

My best,
Melanie

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C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]

Posted by liz28 on :

I was lucky to hit on the right abx combination about three months ago. Although it may turn out to be a lifelong maintenance treatment, there's no getting around the obvious, which is that when you find the right combination, it can work very fast. I was disabled for almost five years with little or no improvement, and now I'm working two jobs and exercising. So it's more likely that you just need to switch your abx.

In my case, I also did rocephin for seven months with little or no improvement. Since I was on a cyst buster at the same time, that wasn't the problem. What helped me was to treat the co-infections HARD (no plaquenil for babesia!) and to use ketek as my macrolide.

Flagyl also did help, but eventually it did everything it was going to, so I stopped taking it.

Posted by cigi (Member # 6600) on :

Thanks for your replies - I feel so disconnected from myself and just wondering why this is at its worst now. Gallbladder is going out on Tuesday, and my doc is bumping me up to 3 gr after the bladder is gone. She has me on levaquin - I can't believe how much I can't identify myself with me. Sounds sick. She said for as long as I have lyme, I'll probably be on rocephin for at least a few more months. I can't help but wonder if its the disease mixing with the antibiotics or the antiobiotics doing the brain damage. I have global hypoperfusion in the brain, but sleep is not rested, time is distorted and identity is lost. Fun stuff. I know everyone is sick on this site, but I can't help but wonder if the rocephin is causeing the mental stuff.

I'm on levaquin also, which I'm stopping due to surgery on Tuesday and see if I feel any better. I feel like I lost my personality. YOU MUST BE BORED HEARING THIS FROM ME. I apologize. Physical pain I can tolerate, but the mind stuff is your way of thinking, life, personality.

Thanks again and God bless.

Cigi

Posted by KeyLymePie (Member # 7434) on :

quote:
Originally posted by liz28:
I was lucky to hit on the right abx combination about three months ago.

Liz, what was the right abx combination for you? Thanks!

KLP

Posted by Christine202 (Member # 6158) on :

I have been on Lyme treatnebt for 8 yars now.

WHat I have learned from my own experience is that you need to find a balance with your Lyme treatment. Yes its good too herx, but If you are finding yourself worse and worse and less and less active b/c of the abx and there is not let up or improvment then its time to switch or lessen your dosage ...

My LLMD always says the gaol is to be able to finction on Lyme treatment not be bedridden for months and months....

WIth this balance I went the low dose dlow route...it took a while but I had less toxic build up and I got better gradually.

I'm still making strides....sone forward some backward....but Still doing it the slow and steady way.

Posted by breathwork (Member # 567) on :

One of the most difficult aspects of lyme is the loss of my mind as I knew it...

When herxing on rocephin and a few other combos, the loss of the ability to think as I knew how to was the hardest to live with.

Mine has improved over time and treatment. It hasn't been permanent. The short term memory loss is still annoying at times, but the state that you describe has passed.

It's not the rocephin in my experience, rather the kill off of lyme bugs and the accompanying toxins that make life so hard.

The global hypoperfusion is the reason to be on IV rocephin...It will penetrate the blood brain barrier and tackle the bugs there. Orals aren't as able to do this.

I lost my gall bladder two and a half months into IV rocephin. I haven't missed it at all. Surgery is no fun, but feeling better is much nicer. It was worth the loss of a gall bladder without question.

Hang in here. You aren't alone by any means...

Carol Ann

Posted by cigi (Member # 6600) on :

My family thinks I am insane for having it taken out, but my doc uses rocephin primarily and has seen improvement in other cases. I have pain, not painful attacks, but if I continue treatment with her, taking out the gallbladder is the way to go. Usually I'd be petrified, I have heart problems v-tac with the lyme, but I have to get clearance Monday to have surgery Tuesday. If I'm sticking with my doc, I have to have it removed. I don't want to start all over with another doc, can't afford another one, and she has seen my ups and downs with different things. I am interested in other doctors with their protocols and what would do, but I can't afford to get another opinion. She is my 2nd doc - my first tried for a year and a half - improved and slipped back and we were at a standstill. My insurance won't pay for another picc line - I had one last year for 5 weeks with my other doc. My insurance is paying better with daily infusions - I don't have a picc line and drive 40 miles a day to get infused daily for the last 6 mos. My veins are holding out - and I'm lucky I got this far with the rocephin and gall bladder problems.

Appreciate your reply and concern.

Take care, good health
Cigi

Posted by seibertneurolyme (Member # 6416) on :

One of the few things that helped my husband was IV Rocephin. He did a total of 120 grams over a period of 3 months. Unfortunately once he stopped the Rocephin all his symptoms came back -- possibly because he had not treated any coinfections.

In my husband's case there is no way he could take all the different drugs you are taking all at the same time.

The IV Rocephin improved his cognitive function and helped with anxiety/depression as well.

The one thing he did differently than a lot of people is that at the same time he was doing the IV Rocephin he did daily infusions of IV Glutathione and IV Vitamin C -- I did all these treatments for him at home through his PICC line.

The glutathione and Vitamin C acted as antioxidants and reduced inflammation as well. No these treatments are not covered by insurance, but the cost was a lot less than our copay on the Rocephin.

Personally I would not be willing to give up my gallbladder, but that is your choice.

I would also try to find someone who can test your neurotransmitter levels and or amino acids. This usually works a lot better than all the psych drugs. Amino acids can even be given IV.

Dr C in Missouri is doing some work in this area and many ACAM physicians know about this approach.

The major thing I can think of to help with gallbladder function if you decide against surgery is phosphatidyl choline. This can also be given IV, but is fairly expensive as it is imported from Switzerland. This is often referred to as the Kane protocol.

Let me know if you want any more info on any of these ideas.

Bea Seibert

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