http://www.cassia.org/

http://www.dr-zhang.com/LD/flowchart.htm

http://www.cindeegardner.com/boom11.htm

http://home.rochester.rr.com/bkdavis/

Good luck,

Jack

If you are knowledgeable about natural remedies you also know that some can be as toxic to the system as an antibiotic can. Some people believe that just because something is 'natural' it's safe.

Also, craniosacral therapy and lymphatic drainage can help reduce symptoms, rev up the immune system, and reverse tissue damage.

It's funny because I have been seeing a Tibetan doctor for the last few months, and when I told her about the lyme diagnosis and what the treatment was, she encouraged me not to go on antibiotics for an extended period of time. Same with the homeopath who used to treat me when I talked with him today.

It's hard to know what to do when you test positive on tests that are unreliable. (the lyme tests) It's hard for me to quite believe I have this strange disease that seems to affect every system in the body, different for diff people, without ever knowing I was bitten by a tick...

It's funny because I have been seeing a Tibetan doctor for the last few months, and when I told her about the lyme diagnosis and what the treatment was, she encouraged me not to go on antibiotics for an extended period of time. Same with the homeopath who used to treat me when I talked with him today.

It's hard to know what to do when you test positive on tests that are unreliable. (the lyme tests) It's hard for me to quite believe I have this strange disease that seems to affect every system in the body, different for diff people, without ever knowing I was bitten by a tick...

I just started taking Samento and am right now pretty ill. I don't know if it's from the Samento (bad reaction, herx?) or just a "relapse".

I am seriously confused myself about which route to take. I am waiting for an appointment with Dr. B and doing the Samento in the meantime until I see him as I am in the UK. (he's currently not taking new patients).

I'd love to think there's a natural way to beat this thing, but I am doubtful. I am also "scared" of taking the antibiotics long-term. I am not 100% sure Samento is safe either long-term - does anyone know yet?

I have tried acupuncture, and classical homeopathy as well as progressive (electro-dermal) Homeopathy. The latter worked for about 2 months then it was downhill again.

I am discouraged to read over and over also about people who have done antibiotics long-term and relapse as soon as they stop. The alternative, staying on them for life doesn't seem a good idea either.

My own experience has me convinced that exercise is also important. However, it has taken several years of abx before I could tolerate the exercise. It seems a bit of a double edged sword. In order to benefit from the exercise, one has to be in shape to do that in the first place!

Sorry I don't have a better answer for you!

~~~~ Spotted pony's jockey

I would have described the pain as a 9 out of 10. 2 weeks after going on a low dose of Doxycycline, the pain was down to a 2 or 3 out of 10, and I could exercise again without serious pain.

So, in all honesty I would say the antibiotics were great in my case.

I'm not someone who likes to take medicine, but in this case I'm glad I did. As far as side effects go, in the last three months the only things I've noticed while on Doxycycline are increased chance of sunburn (to be expected), slight darkening of the teeth, and drier skin (I had dry skin already). It had no affect on my stomach, except once when I tried taking a dose without food.

You may want to give them a try. If your body reacts poorly, you can stop. But you just might be surprised. Something to think about .....

I have also heard that once you start the abx and go off them "too early," (whenever that is), that you are at serious risk of causing a more intense infection. So it seems like if you start abx, you are trapped there, in a sense. (In addition to the relapse point you made, dll)

OK, so exercise good. I will make myself do that. But I thought I heard something about exercise being bad somewhere else.

see why I'm so confused??

It seems that this board doesn't have any success stories of people skipping the meds and trying alt. stuff instead. Or maybe I should give it a few more days?

Thanks for the link, Lisa. I will check it out.

newby

One thing you need to keep in mind, is that so many of us went for long periods of time
(10, 20 even 40 yrs) with NO diagnosis & NO treatment, which really complicates the situation.
Many also had inadequate treatment to begin with, which was not successful, so the bacteria had a big advantage.

Compared to many of us, your 2 yrs means you're still fairly early in the disease.
The earlier the treatment, the better the results....but only if treatment is adequate
and appropriate.

In making your decision, keep in mind that IF antibiotics are needed, the longer you wait, the more you'll need. That's what happened to so many of us.

I think we all agree with you that we don't want to take antibiotics either, but feel that it's our best shot at getting this illness under control.
The consensus seems to be that acidophilus, nutritional supplements, exercise, & some herbal remedies are very important, too.

A combined approach seems to work best for lots of people. And, unfortunately, there are some who have trouble finding what their body needs to improve their health at all.

I don't know what symptoms you've had, how serious they are, or if you have been checked for Co-Infections like Babesia, Ehrlichia, & Bartonella.
There are so many variables!!

Concerning your positive test for Lyme:
I'm not a dr, but in my opinion, a positive test is much more reliable than a negative test result - especially if it was done at a lab that specializes in Tick-Borne Diseases (ex: IGeneX in Calif www.igenex.com )

The Lyme Disease Foundation brochure says
"False Positive tests occur due to test failure or cross-reacting antibodies (e.g. syphillis, periodontal disease)."

They give a long list of reasons that False Negative tests occur. (Won't list them - they don't apply to your situation.)

Keep an open mind about all your options as you make your decision.
It will effect your health for the rest of your life.

Prior to my diagnosis, I tried a lot of natural things. Even though they weren't specifically targeting Lyme, they should have worked, because the treatments were always based on the diagnosis specific to the form, e.g. traditional Chinese medicine, or classical homeopathy.

In total, I tried vegetarian diet, an all raw foods diet, a low carb diet, years of weekly acupuncture, homeopathy, cranial osteopathy, a brief stint of Tibetan medicine, yoga, weight training, many kinds of supplements and herbs, including special formulas made specifically for me.

Many of them helped, some didn't. Acupuncture was especially helpful, but as soon as I stopped treatment, I was sick again. I hear this is also true of abx, so maybe it is equally helpful, but it is extremeley expensive and time consuming to do as much acupuncture as I was doing.

I do believe that many natural things are useful in supporting the body. I suspect that everything I did kept me from getting sicker than I am. But, at least in my experience, in spite of seeing some very fine practitioners, none of them were able to CURE the Lyme.

There may be some new things out there that will work. Some people's bodies may be strong enough to fight off borrelia with natural help. You will have to do the research and make your own decision.

I don't know..

I have seen a wanderful acupuncturist, who also practices polarity, cranio-sacral therapy..and worked in Chinese herbs, all for twenty years or more. Highly skilled at what he does.

Early in my illness, only months after I came down with symptoms..though I had neurologic effects early on..

He said the natural route would be good for symptoms, or as an adjunct therepy..but abx was the only way to control an infection such as this one.

I was surprised to hear him say that, as I even cleared pre-cancerous cells showing in my Pap smear with him and Chinese Herbs, polarity sessions, and diet. My Paps are clear ever since..for three years now..

But he suggested not to try this with the TBD's.

But then the point of being trapped on abx is a good one..but I am fearful of the infection itself, based on the severe symptoms I and my family suffered relatively quickly with these diseases.

Then there is the complexity and the layers of possible co-infections.. to figure out and all of that.

My best advise to anyone at this point would be to find the most experienced LLMD you can get to, and start abx treatment after a thorough evaluation of co-infections and symptoms, continuing to research on your own on the lookout for co-infections, start a symptom diary immediately with tretment.

I would take very seriously and put huge effort into all safe detox measures from the get go. Anti-yeast diet, MSM, Milk Thistle..and much more..anti Candida Herbs, and maybe GENTLE immune stimulating Herbs and start on a fantastic multi-V such as Pharmanex, plus fish oil..

I would work as hard as humanly possible to excersise as much as I could, and do daily saunas, or very hot baths.

Hit it hard, aggressively, and be mindful of treating co-infections BASED ON SYMPTOMS and response to therapy.

I would do all these things concurrently, plus follow advise here, Doc B's Guildelines..

So you can kill the bacterium with abx, and detox and support your immune systam as you go..looking ahead to supporting the immune also as you come off.

I imagine it takes a multi-tiered effort.

abx-detox-immune support.

The posts on the Mag Malate plus Selenium + B6 may interest you.

I think there are posts there by Clarice..who has made the transition..but that was after abx.

Then..I also remember a poster named Kfarah using essential oils..I think with some success..but she was also on abx during this.

I hope you find answers..I see you are searching.

Sorry I can't help more...

Mo

Physiscian in developing countries use antibiotics far more liberally yet there are no greated rates of resistance.
The antibiotics have helped me so much that I am content to take them as long as I need to. Of course, my health had been steadily declinig for twelve years.

It seems reasonable to me to think of chronic lyme as being somewhat like Rheumatic Fever, a chronic strep infection that an get into the heart, joints, etc... and requires ongoing prophylactic mamgement for years, sometimes for life.

The standard prophylactic regimen is Bicillin, the medicine I credit wiht helping me so much. Good luck in your decision.

Our daughter was LATE "late stage" Lyme, having been bitten in 1973 (not a mispring) but not diagnosed until 1998. Thus, we spend 2.5 decades lost in the "Never-never Land" of CFIDS, etc., but without a proper Lyme diagnosis. We learned early on that mainstream medicine have very little or nothing to offer and most of mainstream medicine was basically harmful anyway. So, we tried almost every so-called "alternative/complementary" therapy that came down the pike during these 2.5 decades.

To give credit where it's due, I honestly believe that using these alternative therapies is what saved her from being far worse off than she was. But, having said that, it is important to recognize that LD is progressive because Bb is a very special pathogen with numerous clever tricks and defense mechanisms.

That's why we now consider antibiotics to be the most cost-effective therapy for treating LD. Yes, we do use and advocate many alternative and "adjunctive" therapies for managing symptoms, but we consider them to do just that -- namely, for symptom management. Many of these therapies carry a hefty price tag, too.

For this reason, we could never in good conscience encourage anyone to neglect to treat a properly diagnosed case of LD with only alternative or natural therapies alone. Been there, done that. In the long run, it didn't work.

True, there are problems with antibiotic therapies also. However, dollar for dollar, they have proven to be the most cost-effective route for us by far.

Keep in mind that it's indeed quite possible that LD could represent a "permanent infection" IF Bb is capable of infecting the stem cells -- which is unproven yet, of course. Nevertheless, one must keep such a possibility in mind. If so, then there are implications for therapy that derive from this possibility.

The real goal may turn out to be "remission" rather than "cure" for patients whose LD has progressed to this advanced stage. If so, then both adjunctive therapies combined with appropriate abx may be required for the rest of one's life.

Dr. B's Treatment Protocol Guidelines imply this same idea, also. In fact, I think that he states so quite directly, but it's been awhile since I've reviewd it, so I hesitate to "misquote" him, in case I'm mistaken about this little detail.

That was my experience with acupuncture. It took two years of weekly treatment to have substantial improvement, and as soon as I stopped, I relapsed.

I am taking the Samento, which honestly I did not think would make much difference (I have become very cynical I guess after trying many herbal things to no avail). But, it would appear I am now going through a big-time herx.

I guess I will stick with the Samento and still proceed in seeing Dr. B in early 2004 as planned because although the Samento seems to have made me herx I still don't have enough faith in it to do the Samento alone (only to find much later that it wasn't enough). Can Samento be enough on it's own?

Well, I just thought you all might want to hear my story to fill out a bit of why I'm asking these questions.

dontlikeliver, I would be interested to hear about the Samento, and how you are progressively doing on it.. I don't know how to make this thing email privately, but if I ever find out, definitely contact me.

new

You sound a lot like I was but it all happened to me in 1979! I gradually got more and more health problems but was not diagnosed with Lyme disease until this year!!

I had the diagnosis of CFS in 2000 and was unable to work.

Many things have helped me, treating my thyroid with Armour, taking low dose Prednisone for my adrenals and now I am taking Samento plus loads of other supplements to help my cells function better and this seems to be working.

I have had a rough road with the Samento but things look a bit like they are changing for the better. I am able to do lots more physical things but am still low on cellular energy from time to time. It is beginning to look promising but I know it is going to take a long time.

I am definitely going to try and do this thing without antibiotics because I do not believe that long term use can be good for the rest of your body - I have read reports of how some people are worse at the end of treatment than when they started. I have had a terrible time with Candida just because of the 3 or 4 times a year I have taken antibiotics so they are definitely not good for me. I realise we all have to make our own decisions but because I don't get all that pain so many others talk about I don't feel desperate at all. I do however have the dizziness and the migraines from time to time but thankfully no longer get that dreadful vertigo. I have acupuncture and massage once a week with a Chinese doctor and this has also helped me to feel better.

My husband and I are being treated without abx for lyme, babeosis, and erhlichia. We have been using Chinese herbs, etc. only. After 6 months of being treated, my husband this week showed no signs of any of these on any tests. The lyme is gone.

He was not as sick as I am, so it is taking me longer. However, I am improving every day.

For more info on the wholistic group that I see and their beliefs on treating chronic illness go to WWW.nihadc.com.

I too am dizzy (really it's more lightheaded - not vertigo or spinning sensation) and have been since it suddenly hit me 5 months ago.

My problems started with a bizzarre eye thing and then the dizziness. No pain, ever. I have the ear pressure on & off and noises drive me crazy. I have a noisy 2 year old, so it's not a good scene.

I tested negative for lyme and then went to a LLMD when none of the other doctors could find the problem. I was retested (same Western Blot test) and it was sent to another lab where it came back positive.

Like you, I think my symptoms are atypical and I'm not convinced they are related to lyme. But, in case, I did 2 months on a variety of antibiotics. I took things for co-infections, things to get rid of the cyst form, and regular old run-o-the-mill abx.

I didn't see any difference on the abx, except that I got a neck and shoulder pain that was dreadful and lasted for about 6 weeks. Maybe that was a herx, I don't know. I stopped them even though my LLMD thought I should give it another few months or until I wasn't lightheaded for a full two months.

I had no ill effects from the abx and figure they are worth a try. I'll go back on if I get other symptoms or if I become sure the dizziness is lyme induced.

Now I'm taking various homeopathic & natch remedies and feeling a slight improvement.

Im going off a few things you said to try to reply a bit. ( im herxing too, bare with me)

The thing is, you havnet been diagnosed with anything other than lyme. You have been sick for years,

yet I can understand your concern in saying that it would probably look like lyme disease to a LLMD. i must honestly ask- what has it looked like to anyone else?

Has anyone else been able to give you a diagnosis?

You said your diagnosis came fast. Did it really come that fast? Sounds like you have been sick for a while.

I was sick for eight months, and my presenting symptom was ALSO vertigo.

I was sitting at work doing nothing, and within a split second, I got vertigo that lasted every day, every second of the

day for five months straight. I had intesnse, severe migraines along with nose bleeds, confusion, disorientation,

severe fatigue, stiff neck, etc. They *thought* I had and here is everything I was diagnosed with- but when they did the tests, came up negative:

Brain absess, migraines, classical migraines, atypical migraines, labrynthitis, menieres disease, benign positional vertigo, meningitis, eustachian tube dsyfunction, etc etc.

But no matter what test they did on me, they kept coming up negative. They went so far ( because they KNEW I was sick) to diagnosis me with a pheochromocytoma- a very rare adrenal tumor. Ooops-ct scan of adrenals came back negative.

I was sick and literally thought I was going to die. I have no clue why or how, but my vertigo DID end after those five months on its own. I still felt like I was walking on bubbles once in a wihle, and my severe migraines stopped, but I still had them

along with severe pressure in my eyes. ( they thought I had sinus problems forever, but THAT ct scan ended up negative also)

by the way-menieres? Doesnt cause constant vertigo - it comes in attacks.

I took myself to the computer the first two weeks of being sick and typed in random symptoms that I was having.

EVERYTHING I pulled up said either Meningitis or lyme disease.

I went around for eight months , eight long months, searching the web and everytime i did, I would STILL keep pulling up lyme disease.

I had actually hehe, foujdn this website quite a few times, but didnt know it had a forum part to it, so I would always click it off.

It was a friend of mine who suggested I be tested for lyme. I asked my former family doctor to test me and she said "if you had lyme, you would be laying on the floor right now".

Guess she didnt listen the days I told her how I had to drag myself up the stairs screaming in pain from my migraines.

I called my local lyme association and they hooked me up with a LLMD. He tested, and I wasnt even POSITIVE, I was equivocal.

My Lyme Antigen ( urine) came back positive on all three tests.

Within a week ( and again, I dont know HOW or why) of amoxy 4000 mg, i was out mowing the lawn. My joints NEVER hurt me.

I NEVER seen a tick bite. But, what i did do was go around for eight months

KNOWING I had ALL the symptoms of lyme disease, and I thought " newp, never been bitten by a tick" and/or " I neever had a rash".

Sad fact is, I WAS bitten by a tick- when I was 12. And Ive had numerous rashes- funny how the mind escapes you when you have an infection in your brain

When I started abx for lyme, a large bulleye came out on my foot and hasnt left since. It goes "in" on the days I feel good and comes "out" on the days I feel terrible.

I DO understand your concerns. Even after I was diagnosed- ( which was in march of 2003), I came home, put my antibioitcs on the counter and would not take them ( until MAY)

I caused myself more problems doing this, big time and now Im paying for it.

Am I better? Getting there. Just wish I would have put a little bit of speed in it.

Hope this helps

I'm sitting here just feeling so sad that there are so many people that have been so sick for so long, going thru the same crap that I have been. I am just SO sorry and I hope that we all get well as soon as we can.

new

Some people fight off lyme on their own like a friend of mine who says, "I once had a bullseye rash but it wasn't lyme." Why? Becuase she never got sick, and that was many years ago. She does have a summer house in the Hamptons, so I'm sure it was lyme.

Long term antibiotics can be very hard on some people and may only keep them in a holding pattern. For others who can tolerate it and respond, multiple long term antibiotics brings them back to functioning healthy lives.

I've interviewed a few people who were on longterm antibiotics--one began 3 days after the tickbite on Shelter Island and was on them including IV for 8 1/2 years and was bedridden...another began them 15 months after the tickbite/rash and was on them for 2 years, improved then relapsed....both have done very very well with ozone saunas.

That's a small group...and Tami, Li'l Dreamer, who did ICHT and relapsed, is doing well with her new ozone sauna. But its too early to know. The first two, steadily improved over many months.

There are many ways to approach the infection. For the average person who went undiagnosed and now knows they have chronic lyme, and can tolerate antibiotics without bad side effects, that's a good place to start, and see if you improve. For me, I took antibiotics within 12 days of bite (when rash appeared)...they didn't do much for me. Hyperbaric oxygen did a lot more.

The best thing I can tell you is Get LLD and get treatment now the longer you wait the worse it'll be to be rid of it.