It seems that when one starts on antibiotics that it turns into a viscious cycle that requires you to stay on antibiotics forever, by stirring them up, sending them into hiding, etc.

I wonder if anyone out there with chronic lyme never took antibiotics and never got the worse for it. Or was on antibiotics for a long time and stopped and wasn't the worse for it.

I feel so trapped in this antibiotic cycle. I think I kow the answer. That if you have Lyme, you'd better take antibiotics to at least keep it from getting worse.

My dad has been diagnosed with Lyme, and after taking doxy for a short while, he just decided that he was not going to do antibiotics or see a Lyme Doc. I keep telling him that he should be on antibiotics, but wonder sometimes if that is so true for everyone.

Robin
 

I've had similar thoughts.

My own answer is that I think once you have Lyme -- you've got Lyme. That's it. I don't believe it's ever gone.

Also, you have to get rid of any coinfections in order to be able to fight Borrelia.

I think there are a lot of people out there that have Bb spirochetes and probably coinfections too and they don't even know it.

My theory (backed by some literature that I've come across through time) is that the symptoms of Lyme may or may not be present even though you're infected.

What the reasons for the presence of symptoms are, I have no idea. Some of my theories for this are: your immune system, how long you've been fighting it, how many times you've been infected, stressful episodes in your life, how well you take care of yourself, genes, diet, exercise, etc. The list is probably infinite.

I personally believe that I first contracted Lyme in my early childhood and only had minor concentration and emotional problems.

I had a very active adolescence and I think that helped in keeping my symptoms down.

In my late teens and early 20's, I know I was reinfected twice more. After that I have 2 more occasions where I had tick bites and bull's eye rashes.

My life had become more sedentary at that point along with serious demands for 24x7 work hours. That's when I started really feeling it.

Even then, I didn't complain. I had all kinds of problems and I wondered what was wrong with me but didn't dig very deep for an answer.

It was another sunburn type rash on my toe along with what I seriously thought was meningitus that got me a diagnosis almost 3 years ago. CDC positive.

Now, like you, I've been on abx treatment for a long time. During that time I became + for Bartonella, + for HME and now + for babesia.

When I started treatment, I felt a lot better physically than I do now. I was a mental basket case though. Since treatment, all of my psychological problems have gone. I've only had one spell of depression that lasted about 10 days during a medication change.

Now, I'm physically worse but definitely consider that better than the neurological hell I was enduring.

I will also say that almost every time I take a break from abx, I feel better than when I'm taking them. I just want to make sure I can get the spirochetes to a point where my body can deal with them again.

I believe that I will have to monitor myself and start abx again if I feel poorly when not on them.

I'm not disabled. I'm just never sure whether I'll be capable of doing something until the moment arrives for me to do it. I also don't know how badly I'll be affected by doing things; big or small.

OK. You weren't asking my Lyme life story. You got it anyway.

Best wishes,

Corgilla
 

I think yes and Ithink no- I know that doesnt help.

If you are not getting where you like in treatment, it *may* be a coinfection. I tested negative for both babesia adn bartonella, went on treatment for babesia and was still negative six months later, til I QUIT treatment for htem.

ALot of LLMDs are just treating them now, hands down- regardless of tests.
 

i dont think i will ever be at 100%

i hope to be close. sometimes i wonder after all the return symptoms from abx like yeast and leaky gut, which is better...it seems like a never ending circle

amyb
 

I seem to become more debilitated when following a rigorous abx. regiem---but that's supposed to be a good sign ? The anx are killing off the critters. OK.

But I can't help but try and see the big picture-way down the road. I am over 60-have been infected with "something" since birth. Dx. Lupus--then in 03 Bb and co-infections. Sick a very long time.

Recently, I have tried to cut back my meds--
feel better-but have also been seeing an alternative MD and a Functional Medicine MD that really seems to have her head screwed on right-amazing lady.

She has me convinced that when she is able to balance my body---build immune system---etc. with her specially designed formulas that I will finally see the light at the end of the tunnel.

I am not sure about a light if strictly on abx. Just look at the info coming in on long term effects.

So for now-I choose a decreased load of meds--nutritional, PC, and Glutithione Ivs-her formulas-Xango juice-mag., and liver support.

This is not to say abx. haven't helped--they really saved my life-sure of it.

But years of them ? Don't think so.

BTW-what do you all think of the LLMD's treating for co-infections across the board- esp. if one tests neg. for them?

This bothers me a great deal. If ya got 'em-treat 'em. If not sure why chance strong meds like Rifampin-Quinne, etc.--scary to me.

I don't know how to answer a post briefly. Apologize

More on this subject--please.

Choc.

PS-And what about if you have multiple viruses? I've had noone but the Functional MD address those---new at this--1 year--so will ask my LLMD about that when we see eachother again.

DMC
 

Like that Owl in the Tootsie Pop commercial....The world may never know.

Robin
 

Guess you use doctor search for a doc who does Benecar --Marshall Protocol--- shouldn't you wait on that till more into abx. tx? Does that cover co-infections--Yes, I have read and printed out his stuff but the neurologically whacked brain won't let me digest it. Would be scared to embark on itwithout lots of med. support.

What did anybody think about my question re-treatment of co-infections across the board if tests are neg.

I know that if you have all the co.-infec. symptoms they treat empirically. But ---I don't know--confusing myself.

Will continue to cut back on abx. for a while and see what happens.

At one point I thought that I had this down pat--was ready to stay on abx. all of my remaining life. But now that my daughter's has come back--my son and sister were just diagnosed, I have their best interests at heart and need to re-think this thing.

Don't want them to follow the same ol' routine as they have more of a long life ahead of them than I do. Daughter only 27-thinking of marriage and kids---

I'd like to be around and 90-95% well for her
and hope she could safely deliver children--She was ILL-for 9 years before dx. Got really better after 2 years of tx-then she chose to quit---Bowen says she is pos. again--think she is--signs and symptoms including a recent rapid onset pneumonia.

I don't know--jes don't really know. This is bad enuff for the Mom but when you have to think long term for your kids---all of a sudden you just get fearful.

Guess there are no answers---yet-anyway.

Rockin' along--creating my own plan for now.

Thanks to all with the same concerns that responded.

Choc.
 

2. There is NO test that has ever been developed to tell if EVERY spirochete.. in ANY form.. has been totally removed from your body.... therefore.. there is NO proof of ANY cure.

3. There are people across the globe who try all sorts of things to feel better. Not one protocol can make every single person 100 percent well again.

4. There are infectious agents on this earth that we have not even identified yet... therefore we can't know if they are affecting us.. or what to do about them if they are.

5. If someone tells you a specific treatment will CURE Lyme ... think twice.

And that's all I have to say...

Basically what this abstract is saying is that a termite.. that was discovered in hard rock ... was found to have a spirochete in it's intestines.

The proves spirochetes have been "around" for at least 20 million years.

1: Proc Natl Acad Sci U S A 2002 Jan 29; [epub ahead of print]

Spirochete and protist symbionts of a termite (Mastotermes electrodominicus) in
Miocene amber.

Wier A, Dolan M, Grimaldi D, Guerrero R, Wagensberg J, Margulis L.

Department of Geosciences, University of Massachusetts, Amherst, MA
01003;
Department of Entomology, American Museum of Natural History, New York,
NY
10024; Department of Microbiology, University of Barcelona, 08028
Barcelona,
Spain; and Museu de la Ciencia de la Fundacio "la Caixa," 08022
Barcelona,
Spain.

Extraordinary preservation in amber of the Miocene termite Mastotermes
electrodominicus has led to the discovery of fossil symbiotic microbes.

Spirochete bacteria and wood-digesting protists were identified in the
intestinal tissue of the insect.

Fossil wood (xylem: developing
vessel-element cells, fibers, pit connections), protists (most likely
xylophagic amitochondriates), an endospore (probably of the filamentous
intestinal bacterium Arthromitus = Bacillus), and large spirochetes were
seen in thin section by light and transmission electron microscopy.

The intestinal microbiota of the living termite Mastotermes darwiniensis, a
genus now restricted to northern Australia, markedly resembles that preserved in amber.

This is a direct observation of a 20-million-year-old xylophagus termite fossil
microbial community.

Before i started ABX i sure didnt feel great. But now, i still feel terrible (in a different way).

Now, i cant eat or drink anything. That sure puts a damper on my social life.

Im worried about my GI track and my hair is falling out.

I havent been on ABX as long as most of you, but im really struggling.

Im trying to schedule a trip to Italy next spring, and im so worried that i will still be stuck on ABX. Why would i even want to go if i cant drink red wine and eat pasta and bread.

Its no way to live.

Just my two cents.

Jordan

------------------

 

quote:

---

Originally posted by Lisa in Arizona:
dmcbrayer,

Dr. C checks the bone marrow every four months??? I haven't heard this. How does he test it? Lisa

---

Jordan...the diet is a small price to pay for being well. You need to at least get the Lyme knocked down before stopping the abx.

Both of my parents suffered from untreated Lyme. It's not a pretty sight.

------------------
oops!
Lymetutu

 

Im just getting very frustrated about the yeast.

Im worried that im making myself sicker.

I can handle the diet, if i didnt have to deal with yeast symptoms day in and day out. Especially, when im treating myself with diflucan and nystatin.

I feel like giving up or trying Rife.

Jordan

------------------

 

I'm now relying mostly on ozone, supplements, and antifungals. When I feel that I'm less toxic from the yeast, I will add in rife again.

Abx's had their ups and downs, but it was pretty much all downs. I could no longer differentiate between Lyme symptoms and yeast symptoms. Now I'm on the best path ever. Knocking on wood while I write this post.

-greg
 

To the other posters--seems to me if you've been on antibiotics for 4-5 years something is wrong. Either you no longer have lyme or the antibiotics are not reaching the lyme and just making you sick. Maybe you should try intravenous gamma globulin *with* the antibiotics. In any case, years of antibiotics and still sick...is a message.

These are not candy. I know I'm super sensitive but I just took 5 days of cipro for cystitis, and it really messed w/ my digestion. I'm okay now, but that's because I know all the natural remedies to fix up the damage. But that was after only 5 days.

I prefer modalities like herbs, essential oils, ozone, vitamin/mineral IV's, glutathione, immune boosters, hyperbaric oxygen etc.
 

I was wondering this, too, and told my LLMD that I felt my body was sick of abx.

So he let me stop them. Cold turkey. I stopped my biaxin and plaquenil for 5 weeks (this past July).

The first 2-3 weeks felt great!! I felt more myself again! Abx do seem to cause fatigue.

And then some symptoms that I had not had since the beginning of the illness (before treatment) started to come back: such as, severe foot pain, jaw pain, fevers again.

As you might know from my other posts (and other people's very kind responses) - I started back on abx, on Zithromax, which gave me the worst Herx ever.

But my experience wass that when I *stopped* the abx, the Lyme symptoms all started coming back with a vengeance. I don't want to end up back where I was.

Just my experience... I'm not advocating anything here! It does seem to make sense to give your body a break when you feel you need one, though.

Sending all of you heartfelt wishes to feel better very soon.

 

While I feel abx, of varying levels, and sometimes in some cases IV, are necessary to arrest acute infection and bring down bacterial load, I also feel there is no way we can rid the body of Lyme and co-infections while on them.

If that makes sense.

I feel we CAN rid the body of these pathogens by means of our own immune system.

However, in many cases, not from the get go.

But..then we are caught in a sort of a void, or even a trap. Not only the fact that abx's long term can cause superinfections, but our own immune system is somewhat disabled on them.

Parts of the body are unreachable by chemical therapies, bacteria becomes resistant, and we also become overloaded.

To me, it seems there is an enormous void for us.

Our wonderful Lyme Docs are not trained in immunology..immunologists don't know Lyme. Alternative practitioners (for the most part)well versed in the immune system's powers, do not know or work with transitioning from high dose abx..to stabalized immune system..to successful ramping off..and many are not experienced in TBD's.

Perhaps working closely with one who will focus on this with you, and lots of your own intuition and effort could bridge this gap.

You can't go off abx and let the immune system fight the disease until it is strong enough..it can't get strong enough on abx, or at least not with superinfections like Candida, then theres strep and staph..

The Marshall Protocoll (which I attribute my seeking more answers to it's emphasis on immune function)..is in it's infancy in TBD's. While some (roughly 1/3) of patients are experiencing symptom relief, it is very early in the game for them to know whether they are clearing infection.

Others, who have followed the protocol exactly..have had no response, still others have had to stop due to varying adverse reactions that can be quite severe.

IMO..the protocol is definately on to something..but it clearly IS NOT the one size fits all approach it is described as.

I believe TBD's and other infections and our own systems are far too variable to expect that it could be a blanket therapy.

I hope for success with anyone whoreally feels they are a good candidate, and that we will eventually gain benefit, but I think it takes allot of careful study and caution to navigate in most cases, at best.

For me..I am focusing on finding ways to bridge that gap from abx to immune function. Since my more severe symptoms are gone, what steps to take in what order to begin to clear and strengthen my system so I can get ny most powerful and intelligent immune system back on the job..with a load that isn't so overwhelming, and utilizing perhaps strong immune building foods on a regular basis, natural abx's such as garlic and maube some other things..maybe natural anti-inflammatories as well.

Maybe Doctor Zhangs protocol could be transitional.

I have found a very good metal detox in LLmagnetic clay baths. Very effective with much less stress on the organs than metal chelation.
http://www.magneticclay.com/

Stuff that's safe to start on abx, and then transitional and more intense in order to go off. Yeast and parasites..when to do a cleanse..

But this is a huge task. Having a professional who will really work in this manner can help allot. Perhaps a very experienced naturopath, and some swear by ART testing (in GiGi's posts).

A big job to figure out..but I think the best chance at success after long term Lyme and therapies.

Mo

I am getting geared toward the MP myself.

I myself am VERY close to a major break through....BUT....

I feel that the MP will not work if you have overbearing metal problems.

So...that detoxx bath is really working?

I am taking Chemet...or, DMPS at this time for metals...and am looking at ALL things....

I am slowly aquiring everything needed for the Ozone Therapy....sauna first...then ozone machine...then O2 concentrator.

Rife has definately helped and will continue..but these other issues need to be cleared for me before full remission can happen.

Trout

[This message has been edited by troutscout (edited 27 August 2004).]
 

[This message has been edited by Mo (edited 27 August 2004).]
 

Yes, I do believe the baths really are working.

Byron has also had experience with them in his clinic, and likes the results.

Lots of good info on the site..but..I really like the fact that allot of the metals (and other toxins) are pulled out through the skin into the water.

Your organs still are left to process some..mainly that day..over the next 24 hrs.

Couple things..they are MESSY..so definately get the stuff they sell to break the clay down in the tub after you're done..as well as the drain guards.

Also..be careful not to use too much clay.
I thought my levels were low..and STILL used the lowest reccomended amount (they send a chart for condition and reccomended starting amnt of clay)..even though I used the lowest amount (2 cups)..I was hit pretty hard that night.

But..the next day I felt much, mich "lighter" as far as pre-bath condition. ( system burden felt lifted )

My clay was black after I was done (from an origional tan color).

There are a few types of baths..the choices without activated charcoal will show you the results in the tub. Pretty wild.

I also suggest following the advise to drink detox tea for 24 hrs after..and have someone around. I was more fatigued than I can ever remember after the bath. But..no pain or anything..just wiped. And that went away quickly.

They give allot of info on site,..and send detailed written instructions with the clays.

There are a few kinds, such as General Detox (what I use), Mercury detox, Smokers detox, and I think one for pesticides and stuff...

You can also get a couple of clays and alternate them. reccomendations are also made as to how often you should do a bath.

Depending on condition..anywhere from once a week..to once every three weeks.

Like I said..they are more powerful than you think..you'll see when you finish one..at least for me..but I still would go on the low end based on your particular condition, based on the instructions, to start..

Best,
Mo

[This message has been edited by Mo (edited 27 August 2004).]
 

They are doing well, and living a good life.

I think each person responds differently.
 

Other things that hel[ped:
3) ''nutri-joint' supplements
4) gingko biloba (lots)
5) grapefruit seed extract and olive leaf extract, 250 mg of each twice a day. when the gut could handle it.
4) artimesia anua and its extract, artimisinin. (Almost as important as 'malarone' for babesia treatment)
5) Heat treatment with "hot tub" or sauna.
6) B50 vitamin caps
7) Getting enough rest.

DaveS

It is apparently true that some people recover with just 6 weeks of doxy at 200mg.day. But I sure wish I had taken the longer, higher dose of antibiotics right from the beginning! I may well haveavoided a heck of a lot of misery.

quote:

---

Bowen says she is pos. again--think she is--signs and symptoms including a recent rapid onset pneumonia.

I had my son tested two years ago at Bowen and they also said he was positive, then i heard that out of 2000 lyme tests that were done there approx. 99% comes back positive, which seems quite unusual.
so i had him tested at Igenex and to may suprise it was neg. also the western blot and elisa here was neg.
my son did not show any signs but since i recently found out i had it and is suspected to have had it before my son's birth i wanted to have piece of mind and get him on abx right away if necessary.
now with 1 pos. and 1 neg. from what i thought were 2 good labs i called dr.c and he reassured me not to worry that he's sure he doesn't have it, but he also did say watch for any signs or symptoms, but the tests from Igenex are very reliable.
i just thought this might help your daughter, good luck,myjestic

I don't know--jes don't really know. This is bad enuff for the Mom but when you have to think long term for your kids---all of a sudden you just get fearful.

Guess there are no answers---yet-anyway.

Rockin' along--creating my own plan for now.

Thanks to all with the same concerns that responded.

Choc.[/B]

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