Just for the record, I'm taking 600 mg of doxycyl., 1000 mg of Biaxin, and 500 mg of "ceftin" daily.

Caveman

I'm doing very well after 4 1/2 yrs of oral abx. I've had Lyme for 46 yrs. Maybe you've had it longer than you think and it will just take awhile yet.

I had read earlier this evening that you had stopped your abx, but I had no way of knowing that you had not been on IV abx like so many others here. So that's good news. Hope things continue to improve.

I have been having some stomach problems for the past 3 weeks, with some bad acid reflux. So I hope to get off my oral abx before too long also.

You never did say what your secret technique is for coping at present!
Care to share?

Caveman

I was on oral abx for over 2 years and although I was doing pretty good, I still had Lyme. One LLMD suggested that I progress to IV's.

Instead I stopped abx and turned to rifing and have not looked back. It has really helped me. Last year I climbed Mt. Rainier with my son!

What rife machine did you buy?

I am trying out one, it is the noriftrife, but know it is not strong enough. I am responding to rife, so this is good.

Still on antibiotics though.

thanks,

You must eat healthy foods...........NOT the typical American diet. Find a good alternative practitioner to help figure out what supplements you need.

Detox your body...........there is a lot to learn just about this one thing.

Approprite exercise.

There's more............

You have to read and gather what is right for you. Also, finding expert practitioners, medical and alternative, is necessary.

Lyme must be hit from many directions. I don't think ABX alone will do it....this is just my opinion.

It changes your life....every last piece of it.

Sorry this may not be what your looking for but it is my honest answer.

Something is needed to kill the cyst form. I don't think IV's will help anymore than orals will if the cysts are not being killed.

You coild easily have a coinfection also that isn't being killed. Sometimes it is very difficult to find any evidence of them, so you might have to try electrodermal testing to find them.

I tried flagyl and had a bad reaction, neuropathy in my legs. I did try ketek (in place of Biaxin) for 2 months, had my first herxes I believe, plus developed other stuff, and eventually the Lyme symptoms returned - some that I had not had for over 6 months while on my other abx. So I went back to them.

Ernie, I am aware of your success with rifing. I was a little surprised to read recently that you are still rifing once a week. I thought you had gotten to the point of doing it only once a month. But maybe that was someone else.

Yesterday I tried my first attempt at rifing. I'm approaching it very cautiously - very short exposure with a degaussing coil, a set up built by my physics prof. friend, who teaches electronics.

I have also gotten Bryan's book on rifing and Lyme disease. I will be looking into other machines if I start to get any kind of reaction from the present set up, as I increase the exposure times, etc.

I don't ever expect to be able to climb Mt. Rainier, because of the altitude, but I certainly would like to go caving again!

Caveman

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

And yes, I got better. I actually, think I was better A LONG time ago, but the yeast has been kicking the ever living crap right out of me.

Watch out for yeast also.You would not BELIEVE when I finally went off abx, and STAYED off, how many symptoms went away that I thougth were lyme... but they were yeast.

On this one, I support CrimeofLyme's argument.

I bought the "it just takes years and years to get better from Lyme" argument for four years. Then I started ketek and a cephalosporin (sp?), which blew away a lot of the Lyme, and maybe some mysterious undiagnosed co-infection as well.

With the drop in Lyme symptoms, I found out I had babesia, and that's going away after just four months. With babesia out of the picture, I found out I had ANOTHER co-infection. Although the jury is still out on this, it's probably bartonella, which supposedly can be cured fast these days. Even Dr. B of Long Island says in his Treatment Guidelines that bartonella can be nearly indistinguishable from Lyme.

So don't get sad, just take the next step! And by the way, your abx combination sounds a little odd, and a little weak. These days, people tend to rely less on super-high doses, and more on complementary abx combinations.

It took 18 months for a dx at least. Although looking back I had symptoms in the 80's and 90's. They just stopped me in my tracks for short periods of time. Nothing like the symptoms I received in Oct. 2001 that stopped me big time.

I have been on abx for approximately two years with breaks in between.

Thanks for this post. It does get discouraging. It is good to hear that others have gotten well and it did take longer than two years to do it or how ever long one has been on abx.

I do detox with epsom salts and clay.

I also changed my diet even before I was dx to "if it is white it ain't right". AFter 3 years of being strick with it, I do now include other foods now and then but have had troubles if I don't limit things.

Exercise is something I am still working on. It seems I have a hard time keeping it to a routine. It cycles. I hope to get it in a weekly routine soon.

Also getting out of the house seems to still be a plan in play. I have yet to figure out how often and how long I can get out in my power chair and cruise without it setting me back several days or weeks.

Very interesting comment. I take acidophilus (4 caplets = 160 million mother cells per day), and diflucan (200 mg) every 4th day (this just got stretched to every 5th day because my insurance company will only approve 6 pills per month. Go figure. And this prescription is now for a generic brand. I have been wondering if this is where my stomach problems started.

I was tested negative for candida a few months prior to that. And I was tested for co-infections this past fall, because I have gotten 3 deer ticks off me after the one that gave me Lyme and Rocky Mtn. spotted fever infection in June 2003. I still test positive for the RMSF, but none of the other co-infections have shown up.

And Robi, yes I take B6, B12 vitamins, multiple vitamins, E, C, and manganese everyday. I stopped taking zinc supplements after a faculty candidate here presented her research showing that zinc kills neurons. It seems to stop the flow of mitochondria within the nerve cells.

I jokingly commented to her that since I had been taking zinc to help fight cold infections, I now had an explanation as to why my MRI on my brain showed it had atrophied and of course I have memory problems, and even where my fatigue was coming from, since the zinc was destroying the mitochondria in my cells.

Sorry about that, but one thing leads to another. I don't take any other supplements.

Something that I have wondered, is how does one ween oneself off their abx? As I increase my rifing, I hope, I will want to do this.

So, Crime of Lyme, how did you stop? Certainly not cold turkey!

Then babs showed up obviously and bactrim+artemesinin took care of most of that.

I still have a few residual problems(sometimes sore knees and a swollen elbow and a night sweat now and then) But I'm mostly OK.

I don't watch my diet and never had any fillings so I can't comment on that part.

I'm guessing I had Lyme at least 10 years previously.

Also I self treated the whole time except a local MD gave me a month worth of tetra to start.

I'm so paranoid about getting that sick again though that I do a couple of short rounds of meds a year or when I don't feel quite right.

I think you can lick it...you may never get off meds forever but you can get it to the point where it's easily manageable.

Charlie

Caveman-- Yes, I am still rifing once a week and plan to continue at this frequency (HA). I am only 19 months into the rife program. Doug said it took him 3 years to get better and he still rifing after 10 years (but only a few times a year).

I suspect Arnelli is right when suggesting that many people here at Lymenet are chronic cases - or the cases that may take longer to treat, for whatever reason.

I know when I was in a horrifying interstitial cystitis (bladder disease)flare a few years ago - I spent so much time on the internet - either gathering info or giving it.

When I really started feeling better, I stopped going to the IC message board less and less because I was out living it up - celebrating the fact that I felt healthy again.

So it is quite possible that a majority of the success cases aren't on these boards - as they're out climbing new mountains.

But hey - I'm just a fellow lyme brain - what the @#$% do I know?

Hang in there...and believe that YOU, too, WILL be a success story. You have to have hope.

Blessings,

I didn't expect that any of the people checking this forum would have gotten well from just taking oral antibiotics. As you say, DR W, when one is feeling well, or better, they don't check in here as often, or not at all. I know I don't.

That's the reason that I asked, in my original query, did you all know of "anyone" who had gotten well after being on just oral antibiotics for at least 1.5 years. Apparently not.

Everyone has had to go onto IV abx or some alternative treatment to get "well."

And by well, I do mean cured. No Lyme symptoms what-so-ever, no further treatments needed.

I would also consider someone to be well if they were symptom free, even if they use rifing or some other non-abx treatment to maintain their wellness.

As I indicated originally, I am getting discouraged by the lack of improvement after 1.5 years of oral antibiotics.

If one has been ill that long, I would consider it to be chronic LD. I'm not talking about those lucky people that catch it early and knock it out with a few rounds of oral antibiotics.

In my case it isdefinitely chronic. I've had LD for nearly 8 years, 6.5 without treatment. But then I got reinfected with a stronger strain it would appear, which gave me the EM rash and much worse symptoms than I had had before.

I have been keeping the disease somewhat in check, but that led to my increase in abx and increased dosages. It seems to be a constantly losing battle, with the present treatment.

Therefore, I am beginning to think that I have to try some other techniques.

As I posted earlier, I did a very short rifing treatment Friday. Today, Sunday, I have a headache and other assorted aches. Hope this means the rifing is having some affect on my chetes.

I do appreciate your suggestions of other abx and supplements to consider. I particularly like the notion of gettng off the abx. completely! Thanks.

Caveman

I dropped my dosage of biaxin XL down from 100o mg, to 750 mg for a month, then 250 one week on and one week off.

I THEN added in ceftin, but only 250 mg of it for a month( i was on abx for 18 months total though at full dosage)

and then, yep... cold turkey.

AND I GOT SICK. Big time sick. But after two months, I am SOO much better.

Ok, I lied. Right now, I have the flu that my boyfriend just got over ten days ago. I'm not happy. DO NOT GET THIS YEARS FLU.

I've been sick since Wednesday with it.

If I could just barf, I might actually throw up some of these flu toxins, but lo and behold, no barfing yet.

Now back to this yeast, did you have a blood test done? It just means it is not in your blood, which is good!

Candida is like lyme- you gotta know where in the body it is ( blood, gut, etc) to really find out if you have it.
Just because your blood test? was negative..

Doesn't mean you don't have yeast.

Honestly though, I always tell ANYONE who thinks they may have a prob with yeast, PLEASE go to a wholistic doctor. They are like LLMD's for lyme.

I have been off abx 19 months.

My original candida blood test said I was negative.

I had a live blood viewing and it showed something totally different.

I treated the candida for 9 months. Stopped enzyme treatment March 2004.

Once I stopped abx and started concentrating on the candida and detoxing I slowly got better.

March 2005 I will celebrate one year of no supplements & living life completly.

I thank God everyday I have my life to the fullest one would expect to have.

If you have access to a doctor that can do a BRADFORD MICROSCOPE viewing and they are very experianced with it, you may find other problems that would may not be detected on a serum blood test.

Always keep looking for answers. Leave no rock unturned.

Actually it took 3 almost 4 years but I believe I got reinfected by wife wich is only fare since I belive I infected her. Ive been off abx's since sept27 04. No symptoms except I had some bad back pain which I had even before lyme football injury.

Crime of Lyme, thanks for explaining how you reduced your abx.

Sorry you have the flu. I did get a flu shot this year, one of the advantages (?) of being old. But I also come in contact with about 100 students four days per week. And most of them seem to always be sick.

And yes, my test for candida was a blood test. So being in the stomach and gut wouldn't necessarily show?

This is an interesting thought for another reason.

About the only thing I can think of that I changed about my diet, before bringing on the stomach problems, was I stopped using aspartame as a sweetner in my one cup of coffee in the morning.

I had been reading on this forum how bad that artifical sweetner could be to our brain cells, so when I ran out, I replaced it with sugar!

Then a couple of days ago, I read Dr. B's guidelines, and he says cut out the sugars and use aspartame.

It's sort of hard to believe that only 2 tps of sugar in the morning could bring on my stomach acid problems, but I'm beginning to think this might be the reason for the acid flare-up (candida driven of course).

And I was really missing the taste of my aspartamed coffee as well.

Yes, I know caffeine is (can be) bad for lymies. I have had times when the caffeine in chocolate was too much for me, would make me dizzy.

And a couple of big glasses of iced tea in a restaurant up in Maine in 2002 made the restaurant rock more than the big sail boat I had been on two days earlier. I almost had to be led out of the restaurant.

Kathy, you are the Boss! congrats on getting off "things" and getting well. You mention fighting candida. Now you did also have Lyme, right? If so, you hold the light of hope for many here.

Last May I seemed to be completely well also. The best I had felt in nearly 7 yrs. But my Lyme symptoms returned in 6 weeks. I was on abx all of this time.

TreePatrol, I know some about back problems. Hurt mine a couple of times lifting things the wrong way.

Then when I got LD, but undiagnosed, my back got worse and worse, and I was told it was osteoarthritis.

Once I got LD for sure and started abx., my back amazingly got well after being on abx. 5 months!

Actually my first infection had pretty much gone into remission, except for some neurosymptoms I could bring on with a heavy dose of caffein.

My on-going problem was my bad back. If got stiffer and stiffer. Getting out of bed and putting on my socks was a big chore each morning.

And that is one of the main reasons I didn't discover that deer tick on my ankle, that gave me the more recent bad infection, until it was way too late.

So treepatrol, don't pass off the backache as just being due to your injuries. Mine didn't seem to be from that at all.

Good night everyone,
Caveman

quote:

---

Originally posted by caveman:
Wow, a lot more new posts! Thanks.

TreePatrol, I know some about back problems. Hurt mine a couple of times lifting things the wrong way.

Then when I got LD, but undiagnosed, my back got worse and worse, and I was told it was osteoarthritis.

Once I got LD for sure and started abx., my back amazingly got well after being on abx. 5 months!

Actually my first infection had pretty much gone into remission, except for some neurosymptoms I could bring on with a heavy dose of caffein.

My on-going problem was my bad back. If got stiffer and stiffer. Getting out of bed and putting on my socks was a big chore each morning.

And that is one of the main reasons I didn't discover that deer tick on my ankle, that gave me the more recent bad infection, until it was way too late.

So treepatrol, don't pass off the backache as just being due to your injuries. Mine didn't seem to be from that at all.

---

I drink a cup every morning and that hasnt returned nada zip zilch. My backs feeling quite a bit better now after a few days of vicodin to calm it down.

Always vigil now thanks.

I wanted to bring this back up to reply. My "flu" is really pneumonia diagnosed via xray, and I'm really not feeling all that well in the head ( but Im on GREAT cough and pain meds )

But I do want to reply to this.

Now let me think of what I wanted to reply to.

Dr. B suggests using aspartame? I can't believe I never caught that. DO NOT USE ASPARTAME.

Here is some tips for you though:

1.) Candida that is not found in the blood, simply means- it may not be in the blood. Then again, it just might
2.) There are severeal tests that can be ordered for candida through Great Plains Labroratory. They do ALOT of yeast/leaky gut testing. That is where i had my testing done, and my blood testing was done at

Quest- and was VERY positive. ( Im systemic... it doesn't feel neat at all .

3.) NO COFFEE! I know, this sucks. Im a hypocrite. I still drink it. But the colon, liver, intestines, etc are actually a very very large part of the immune system! Keep it clean! Lets quit coffee together.

Since I've been sick these past fews days, and I can't taste anything, I've been good on it, and I feel drunk, so I think that some of the yeast is getting a bit hungry
4.) You can take as much diflucan,nystatin, etc etc that you want for yeast, but DIGESTIVE ENZYMES is the key ( as is also all the yeast treatment you can come up with!)

I had muscle testing done, live blood cell analysis, etc.. which showed that after 18 months of abx, I no longer have lyme. I would have absolutely SNEERED AT THAT had I still been on abx when I had that testing done, because thats how sick I was.

But since going off, I can't believe I have improved. BUT PLEASE DO NOT GO OFF YORU ABX! That was just me! I'm taking a huge leap of faith here and am just now really starting to zoom in on the yeast.

I also noticed, that for *me* ALOT of my symptoms flared after I ate sugar, especially pain! So in the end, I hope this knocks out the pain.

I lost my train of thought. If you wanna email, etc, you can.

Hope you start feeling better!
COL