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» LymeNet Flash » Questions and Discussion » Medical Questions » Who didnt get better with multiple ABX ?

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Author Topic: Who didnt get better with multiple ABX ?
coltman
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Provided you could tolerate them , they were high doses , for 3 or more months and they covered all bases (e.g. spirochette, cysts , l -form).
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seekhelp
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I sure hope you get a LOT more answers coltman for goodness sake. I have a strong interest in this topic too.
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coltman
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Wow lots of overwhelming answers! [Smile] I am personally started leaning toward multi ABX Burascano like protocols as being most efficient tactic.

Since out of hundreds people's testimonials (I spent past 2 month reading all over internet) , and patient cases (like on LymeMD) it is most common trend that multiple abx help with lyme . In very severe cases like wildcondor she had to stay years on them, but nevertheless she got better

I also see a trend that in personal testimonials for alternative treatments people go rife , mms , vit/c after abx. So its kinda hard for me to attribute their subsequent cure entirely to alternatives.

Relapses after abx seems linked the most to monotherapies, "fixed " later by adding more abx ( question here arises why waste time and life by running monotherapy when it is practically guaranteed for relapse sooner or later ,since it leaves bacteria intact in one form or another)

ABXs are also the one with most research and clinical testing behind them , particularly for lyme (lymeneteurope has good links in science section)

Anyways my conclusion for me personally is that I will run heavily dosed stack of 4-5 abx (hoping I can tolerate them ) as a base of treatment. I hope I can get away with 3 -6 month of it ,since I am not disabled.

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Lymeorsomething
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Yet Dr B got well running Ceftin solo...there lies the conundrum...

Lots of polluting variables here. At best, one can try heavy loading of abx and hope that's the key. I doubt it's a key for everyone.

If the desire is to hit heavy, why not try IV as well?

A 4-5 abx stack would be impressive. PM me your doc [Smile]

To be honest, I'm running Mepron, Levaquin, Omnicef, and Rifampin currently and have not made a world of progress. Of course, maybe I should assume it's an all lyme thing and run 4 hard-nosed abx...

Coltman, how is your HPA axis holding up?

Watch out for Rifampin with hypothyroidism. It can render one temporarily hypothyroid despite appropriate meds...

--------------------
"Whatever can go wrong will go wrong."

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coltman
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quote:

Lots of polluting variables here. At best, one can try heavy loading of abx and hope that's the key. I doubt it's a key for everyone.

Well I at least wont have to be worried that I didnt run enough abx and need add more after months of being on abx already. I dont have time to play guessing games anymore

quote:

If the desire is to hit heavy, why not try IV as well?

Well if IV was not expensive and I could run It myself I would .As it stands now I am still weighting pros and cons of IV.

If money was not a problem I would defintely run IV everything , but it just so prohibitively expensive that its basically impossible without prescription.

And prescription means I need waste more time getting apt with LLMD and finding one willing to cooperate - and so far it was nightmare even getting appointment. So that route seems closed

quote:

A 4-5 abx stack would be impressive. PM me your doc [Smile]

Well I didnt have appt with LLMD yet. And I kinda still on the fence whether I will keep the only appt I got (it is very expensive - one appt can cover 2 months of abx self payed ).

I just know that I wont be happy with anything but complete BB coverage, as I don't want be worrying about not hitting all forms.

So regardless of LLMD prescriptions (that If i get one) I will run complete stack ,providing I can tolerate it


quote:

To be honest, I'm running Mepron, Levaquin, Omnicef, and Rifampin currently and have not made a world of progress. Of course, maybe I should assume it's an all lyme thing and run 4 hard-nosed abx...

Hmm . Well that is not exactly the stack I had in mind , Mepron and Levaquin seems to be aimed more at coinfections . It looks to me like macrolides are missing and flagyl wouldnt hurt. Plus your cell wall drug (omnicef) is oral which seems to be ineffective

I basically assembled a list of abx which hit all 3 forms, some of them have synergicstic action with each other and many have good BBB penetration. So my stack would look something like that :
Bicillin ,Roxithromycine, Bactrim, Flagyl. + possibly rifampin and cycloferon on 2nd month

Ideally would be IV rocephin instead of bicillin, but that might not happen

I am trying to avoid fluorquinolones and plaquenil due to very scary sides. I hope roxy+bactrim+flagyl should be enough for cyst and l-forms.

quote:

Coltman, how is your HPA axis holding up?

Watch out for Rifampin with hypothyroidism. It can render one temporarily hypothyroid despite appropriate meds...

Well my HPA is broken already so I cant really make it much worse. I will try get some armour prescr from my pcp but at this point I dont think I can fix it without getting rid of lyme first (if ever).

Corrective actions aimed at HPA just dont hold up (they keep falling back after I stop meds)

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Lymeorsomething
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quote:
Originally posted by coltman:
Corrective actions aimed at HPA just dont hold up (they keep falling back after I stop meds)

Yes, I've noticed this effect too. It's hard to know what the mechanism is for this. Maybe some kind of receptor blockade.

Plaquenil did nasty things to me after only a week (and I tolerate stuff well generally) but it is supposedly effective when teamed with Biaxin.

Floaters continue to be a problem. I suspect my current regimen does not adequately permeate the BBB...

--------------------
"Whatever can go wrong will go wrong."

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jamieL
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I've been on multiple abx for 13 months and am significanty better.

Better, yes.

But i have yet to return to my baseline functioning so I'm not going to say the c-word. (Cured.)

--------------------
Diagnosed with :yme and mycoplasma pneumonia Aug 08.
Treating with Doxy and Ceftin ever since. 15 sessions in hyperbaric o2 chamber

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timaca
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I have had to add antivirals to my medications to continue to see improvements.

I've been on valcyte, acyclovir and oxymatrine (a chinese herb).

Best, Timaca

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coltman
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quote:
Originally posted by timaca:
I have had to add antivirals to my medications to continue to see improvements.

I've been on valcyte, acyclovir and oxymatrine (a chinese herb).

Best, Timaca

Interesting. Did you have any tests which confirmed positive viral infections? From what I read there are some viruses almost everyone has in them and in immunocompromised people they flare up.

But it kinda leaves me wondering how you tell whether it has to be controlled or not

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timaca
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I have (or had) very high IgG antibody titers to HHV-6, EBV, VZV, HSV1, Cpn and Enterovirus. In addition, some positive tissue testing for HHV-6 and Enterovirus.

Some ID doctors believe that if you have very high IgG antibody titers, it may indicate active chronic infection. My antibody titers have gone down with treatment, and I feel better.

Here's some articles to get you started:

http://www.hhv-6foundation.org/testing.html#elevate


http://www3.interscience.wiley.com/cgi-bin/fulltext/111088889/PDFSTART

http://www.enterovirusfoundation.org/chronicinfections.shtml

Best, Timaca

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JamesNYC
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Yes coltman there lies your conundrum. IF you can tolerate the multi-abx. And if you can't an then have to go off abx altogether for a while YOU will have wasted valuable time.

I have been on multi-abx. After 15 months I have improved, but not nearly cured.

My brother was much worse than I was. He was on mono-abx after 15 months he had improved proportionally more than I have.

There are variables including different strains and peoples immune systems.

You should see if you can repost our discussion on mono vs multi abx from that other topic (BD's). It is more appropriate here. I think it is a valid debate.

Ultimately, you should do what you think will work best for you instead of arguing so vigorously that your "research" is "right". Why are you trying to convince everyone else?

Also, you haven't even SEEN an LLMD yet, but you think your limited research is a substitute for real experience? Wow, you are something.

Just do what you've made up your mind to do. It's your body. Be a guinea pig and hit yourself with everything. Then let us know how it goes for you.

Good Luck,

James

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sutherngrl
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Just my opinion. It takes a long time to get over Chronic LD whether you throw mult-abx in your body or mono.

It is more about time and less about amount. It is more about how long you expose the spirochetes to continous antibiotics than to how many or how large the dose.

Just my observation over the last 16 months.

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Abxnomore
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Many of us have elevated viral levels that comes along with having lyme and an immune system that is working 24/7.

There are lot of supplements to combat them along with high dose IV C drips. Often once effective treatment for Lyme and co's have been started the viral issues will calm down and hope fully go dormant. Alternative treatment IMO is the best way to handle them to less the load of more medications having to be processed by the body, unless you can't get them under control.

You seem to be probing and trying to find the million dollar question. Point blank we have many different theories that different LLMD's hold and studies but it's real life experience, which is very individual due to many variables; your own immune situation and response, how long you have ill, what strains you have been exposed to, what co infections you have, whether or not you have take steroids in the past, and your other bodily systems such as adrenals, thyroid, heavy metal toxicity, candida, gluten sensitivities, detox issues and enzymes defects that affect detoxification. Yes, so many variables.

Best to just start treatment and see how your body reacts and take it from there. Learn as you go by listening to your body. There is no one size fits all for this illness. You are not going to find the perfect approach, because there isn't one.

You should explore rife, HBO and the use of herbs and supplements, plus changes in diet. All part of the process of healing.

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coltman
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quote:
Originally posted by JamesNYC:
Also, you haven't even SEEN an LLMD yet, but you think your limited research is a substitute for real experience? Wow, you are something.

Well I am might be overconfident( I am actually having many doubts - but I don't see other options) but from my experience (not just with lyme, but life experience) specialists are not always best option

Some "experts" and "specialists" often are often using sub optimal, "template" approach . If you dont fit their template - too bad .

Reason being they are not personally interested in your particular problem. Much less in spending their time and researching it . So imho there is a solid grain of true in saying "If you want do it right - do it yourself ".

Plus I ran so many times in such astounding ignorance and lack of general knowledge in their own field that I cant see how can they do a good job. Can't trust them. Not MDs for sure.

[ 09-08-2009, 03:13 PM: Message edited by: coltman ]

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JamesNYC
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Yes, I agree!

Many, or even most, Drs are not concerned with pursuing their patients ailments to resolution. I have known a few brilliant physicians who will.

Usually though, Drs just give up when it's not something easy to diagnose.

But think about it. Drs have to see lots of patients, how many hours are they going to spend figuring out ONE case? Easier to refer them onto someone else.

I would suggest that you do see an LLMD so you can discuss the treatment options and pros and cons of your research. Your couple of months reading is NO substitute for a Drs experience. But it DOES give you a good background for discussion. As an educated patient, you can ask good questions. I'd say it's money well spent.

I mean, ever start a plumbing (or any other) project and then wish you had called a plumber instead?

Remember, most experience is NOT published and out on the internet. We tend to forget how limited the 'Net is for good info. Much of it is anecdotal.

'Net info is not a substitute for real world experience.

James

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coltman
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quote:
Originally posted by JamesNYC:
I would suggest that you do see an LLMD so you can discuss the treatment options and pros and cons of your research. Your couple of months reading is NO substitute for a Drs experience. But it DOES give you a good background for discussion. As an educated patient, you can ask good questions. I'd say it's money well spent.


Well certainly I'd like see a LLMD, the problem its been a real chore to do so. I mean I never been so frustrated getting a DR appointment . And I have some experience - try to find good DR for male hormones (another "bad" topic in medicine) , it is bad, but not nearly as bad as LLMDs) .

So if I want see LLMD first - it is more frustration , more money and , which is much more important, another 4-8 months of waiting. And in the end this waiting is not justified imho

I went this way with HPTA - (didnt do anything myself, went trough several docs)- lots of time wasted , for result which would be no different if I did it myself.


quote:

I mean, ever start a plumbing (or any other) project and then wish you had called a plumber instead?

Yeah but imagine you had to call and leave multiple messages to many plumbers before even scheduling a visit, then wait half a year for plumber to just come and "evaluate" it for a hefty fee, and then he may not even fix it , so you would have to see yet another plumber. And then maybe another

And you need pipes fixed yesterday!


quote:


Remember, most experience is NOT published and out on the internet. We tend to forget how limited the 'Net is for good info. Much of it is anecdotal.

'Net info is not a substitute for real world experience.


There are some good resources out there (like lymeMD blog) ,bits if info here and there from patients. - in the end I agree it is not nearly as good as one would like , but gotta work with what is there.

You know in the end of the day I wish medicine was not so stiffly regulated. It would be much easier and cheaper to get drugs, labs and various tests work ups done without gatekeepers and bureaucrats.

On top of it I bet Docs would be a lot less expensive too and would be willing to consult you - because patients wouldn't have to go trough them for every single thing anymore, therefore there would be an ncentive for them, to ,you know, actually provide value .As opposed to raking money by having monopoly on prescription pad and diagnostic templates

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