But...

please don't feel as if you need to make them brief...we enjoy reading all of the JUICY details, OK?

Thanks Betsy for adding Katydid's story!

I don't know if you were referring to me or who but.....in all fairness in what your are trying to accomplish....I do not want to ruin your thread.

My treatment brings about to much Controversy and arguments.

If anyone wants to read about my treatment they can go to search for Oct 7th 2002 or look it up by my name and read my post I did from Europe during my treatment.

I was one of under 10 I believe at that time to experience that treatment. To report it as I saw fit.

It get's overwhelming at times....and sometimes I feel guilty for what I got ( in my health) that others did not.

You are a sweetheart for what you are trying to do.

Just let it be that, Lyme can be overcome.

However you find it.

Thank you for caring, thank you for giving to others.

Kat

I do know all about your story...and it has been a very long and very painful pursuit for health for you. It makes my heart happy to know now that you are well.

But, I think the measures that you incorporated, although controversial to some, were fascinating! And, I think it was incredibly brave of you to do what you did!!!

I won't ask you to repeat it here if you do not wish to do so, but, thank you for the reference dates, so that others who are curious can look it all up and learn from your hard fought battle.

I say this humbly, realizing that perceptions are always in the eyes of the beholder. However, I feel that it is terribly important to pay attention to this aspect of Kathy's triumph over her very severe health crises. Her LLMD was the one who helped her with this part of her successful recovery. She is one lucky gal, and her story is very instructive.

Thanks to Kathy for pointing us to it in the manner in which she did, since the ICHT therapy is no longer available, due to safety issues regarding the death of another patient at the clinic in Italy where she was treated, so that the clinic was subsequently shut down. That's why I can't help but feel that the hypercoagulation issue which Kathy dealt with so successfully, thanks to her LLMD, was such an important part of her amazing recovery.

I hope I'm not infringing upon Kathy's story here, to interject this opinion, but for the sake of others who are seeking answers, I feel that it is very important Not to overlook this aspect of Kathy's wonderful recovery story.

PS to Kathy,
If you read this and disagree, please feel free to state your objections because afterall, this IS Your story. I sincerely hope I've not offended you by inserting my personal viewpoint here, regarding what I gleaned from your case history.

We're all in this together, you know, and I want as much as you do for others to have an equally good outcome as the one you have enjoyed. So, it won't hurt my feeling one little whit if you write an objection or counter my version of what I think was a major contributing factor in your successful recovery.

I sincerely hope I have not overstepped any boundaries to interject my thoughts about your case here, so please forgive me if I might have done so.

Excellent idea to compile sucess stories:

Here's an addendum to mine:

For those of you who are new to the site:

There is hope. I was sick almost 30 years.

My initial presentation was in 1975.
I was diagnosed with Lupus in 1978, then it was retracted when I didn't die as expected -
(I have alwayd refused cortcoidsteroids).

Over the next 25 years I was suspected of having, Autoimmune heymolytic anemia, Fibromyliga, MS, Sarcoidosis, and finally Complex Auto-immune Disorder - culminating in severe neuro complications, most notably severe and chronic Uveitis and Optic nerve inflammation starting in 1996.

In 2002, after an argument with my Opthalmologist when he wanted another Syphilis test (I'd been negative on 4 previously) because late stage syphilis was the latested suspect of causing my eye probelms I tested positive for Lyme and Babesia.

The rest is history.. after a year and a half of several antibiotics, antibiotic combos, anti-Malaria therapy and many many supplements I am feeling 100% with absolutely no symptoms - and I had every Lyme symptom except seizures and palsy.

Medicine, with all it's diagnostic faluts is alot more open minded today than it was in the 70's and 80's when the patient had NO control, NO rights and medical records were the property of the Dr.

And for those of you using alternative therapies - keep using them with an educated mind.
I kept my self alive and functioning using alternative therapies prior to finding the real diagnosis, and adding antibiotics to my mix.

I would love for you to add that here...I'll go digging now and see if I can find it...be right back...

OK...just emailed the link to you so you could post it yourself!!!

M

Its been a very long journey, some of you know us well, others are new here. When we started our journey it was full of hope, and we felt refreshed. Somewhere along the way, we found that many of those we spoke with three years ago, have gone on. Either became frustrated and quit, or became well and dont visit the board too often.

Those who became well, we quickly have forgotten about, and the board is filled with others who are too, just beginning the journey.

Those who became frustrated, began jumping from treatment to treatment in hopes of finding a cure. In hopes of living their dreams of a fullfilled life, free of pain, free of random thoughts on top of random thoughts that come so fast you forget the "main thought" which was not random at all...

While our journey is still in progress, I have been in prayer regarding sharing, being careful not to take the credit our selves, but to Thank God every day for the special people who have interceded in our daily life, to make it a bit better for us.

Dr. Jones, Sabra and his full staff. Some are no longer there, but we love them all. TinCup, LDA, and so many more. Ultimately God brought them in to our lives, and have helped heal us.

Today, I think back when we first got bit...and got sick. My gut said Lyme. My docter said no.

8 years later after almost loosing our 12 yr old daughter to congestive heart failure due to her arrhithmya from lyme disease, watching her hobble like an old lady, and crying her to sleep at night, holding her up in the day to do basic tasks like eating, and wondering if she would live another year (according to her neurologist and cardiologist she would not!) and not even knowing if I should pray for life, death or healing (we had prayed for healing for so long we began to think it was not Gods will) for my daughter....we found she had lyme, erlichia and babesia.

Our daughter had brief periods of remission during her 8 year ordeal, which brought hope. It also brought frustration, because they would be followed by bouts of health much worse that what we had already experienced.

After tincup so lovingly referred us...(yes, with a rolling pin in her hand ready to pop me over the head if I said no!).... to Dr. Jones, we knew that life would be much better.

To our surprise, we were terribly terribly wrong. Our daughter began treatment, and she became unable to be on her feet very long. Her pain now was about 30 on a scale of 1-10, 10 being the worst. The next 12 months of our lives were spent with her in bed nearly 22 hours a day. She cried at night...she cried at day and she tore our hearts apart. So many times I wanted to stop treatment...so many times she begged to stop treatment. But we all would remember the path we had been on.

We began to justify that path wasnt so bad...was it??? Not nearly this bad...

But 8 months in, we literally woke up one day with a daughter who was like all the other teens.
It lasted a short while, and she drifted back into her body riddle with pain. But this brief glimpse, was enough to carry us on with more demand for a healthy life.

I researched more, we spend thousands of dollars to see the best...and Dr. Jones patiently waited. Documenting small positive changes that were difficult for us to realize..

The many trips to the ER, became one long fuzzy year...and I began to doubt again. Was this ever going to end? Was this a big lie? Should we quit antibiotics?

I went to our Internal med doc, and asked her to do a full body scan. I KNEW my daughter must have cancer. Leukemia had been a possibility before her lyme diagnosis. Please check her again. I know we are dealing with something else. The gracious doctor did every test she could. She began implementing new pain therapies. But she told us, that she had seen improvement, even if we didnt.

She had faith in Dr. Jones, and Gods answers through doctor Jones, for healing for our daughter.

She kept us on track with the therapy, herself curious to see if "this would really work".

Our final "tempation" to stop all therapy came with the most severe, debilitating headache one could imagine. Our daughter would writhe in pain, after 100 mg of IV demerol, her body would continue to spasm from the severe pain in the spine and head. For nearly 6 weeks, we made the local er our every other night travel. They finally decided to do a spinal tap, to see if she had intracranial pressure. The spinal tap, although showed no signs of increased pressure, immediatly removed the headache, and she felt a warm sensation at the base of her head. Since that day, her headaches may begin, but relieve easily with over the counter pain medication. She has not been in the hospital with debilitating headaches since then and her body started to show significant healing.

She began physical therapy two weeks later, and has continued building her tissues that connect muscles and bones. Her pain is under control.

Yes she still gets tired, ....but wouldnt you after rock climbing 15 hours a week, e skating once or twice and week, AND doing your school work? Oh yeah, she is retaining her school work too!

Our road to recovery is still in progress. We attribute the excellent recovery so far to answers from prayer from many of you and us on behalf of our daughter, excellent doctors who really care,good diets, and a young lady who never gave up or jumped from protocol to protocol, but followed the LLMDS advice, even when it seemed the rock wall we were climbing was too tall with too few holds.

I know this is long, but I really wanted to share, to give hope, and to help those debating if they should continue or stop treatment, to choose the advice of their LLMD. I hope and pray for all of you on this board, that you will continue to heal.

Love,
Theresa

PS. I am waiting for horse show photos from this past weekend. I will post an addition to her success here when I get those back!

I don't have a problem with you bringing up things at all. And now that you have, yes I will clear them up. I have reasons for not saying somethings, especially where my LLMD is concerned. So let's start......

First off, I would NEVER say anything bad or against my LLMD's judgement because he did what he thought was best and truly cared.

#1. I will always thank my LLMD for giving me a DX that got me going in the direction to save my life. It got me going in the direction of Lyme and pursuing answer's.

#2. Hypercoagulation was there BEFORE ICHT treatment. And I did see a Hematologist that said I did not have it BEFORE I went to ICHT.

#3. Yes, it got worse a month after ICHT. I had a $7,000 DNA test to show I did not have thrombosis but yet the Doc's still figured because of my chest pains and all the stringy stuff on my Darkfields showed fibren everywhere I should have DOUBLE BLOOD THINNERS.

#4. Double Blood thinners did not CURE anything. They made the blood stream thinner which in turn made it easier for the CANDIA & YEAST to move around.

#5. I used these two drug's for 8 months that I did not need them. Based on what was viewed in my LLMD's office. Plus, from the over use of them I became anemic from my red blood cells being robbed by the thinners.

#6. A Bradford Microscopy by a different doctor is what showed the REAL problem. CANDIDA & YEAST. I was taken off both blood thinners that day and ABX. What was misinterpret on the DARKFIELD showed up clear as a bell on the BRADFORD.

#7. I have been taking ENZYMES since that day 8 months ago and have not relapsed yet.

#8. I had another viewing 2 weeks ago and the CANDIDA is 75% gone, MYCOPLASMA now needs to be treated.

#9. ICHT I will say over & over again saved my life. My husband, my family, my co-workers will tell you the same.

#10. What one doctor did or didn't do I do not blame at all for ANYTHING. NO ONE has the answer's. I knew this going into it. I do not elaborate on my LLMD and mistakes that were made out of fairness for him and anyone else trying to get well.

In order........

LLMD DX me & got me started.

ICHT......Got rid of the LYME.

Pathologist....Found the Candida and got me off all meds.

I have 3 doctors to thank. If you did them in a different order what would have happened?

Would the Pathologist have DX me with LYME?
No.

Would the LLMD recommend ICHT? NO

Would ICHT found the CANDIDA? NO

So I can not blame one or the other for what or wasn't done or noticed.

I am just lucky that it happened in that order and thank God everyday for the life I get to enjoy one more blessed year.

I haven't been on this forum for many weeks, and feel badly about that. I always said that when I got better I would hang around here in case I could help others. But healthy living has a way of preoccupying you with other things -- such as the birth of my new daughter last week!

That's really a miracle to me. A year and a half ago, we couldn't have even thought about trying to have another baby. I was so sick that I was barely functioning as a father, and I feared I might never be well enough to risk having a child again.

Today, I'm virtually back to my old self. I still have constant ringing in my ears, and probably will always have (my ENT says permanent nerve damage). But I have said goodbye to about 25 other bizarre symptoms.

In a nutshell, I got sick in August of 2002. It was a sudden mystifying and terrifying deterioration. I was 35 and in great health -- active and busy. Then came ringing ears, bizarre neck stiffness, profound sleep disruption, late nigh panic attacks, strange rashes, extremely dry eyes and mouth, and sudden unexplained weight loss, crushing fatigue, etc. etc. -- all of which spiraled ever downward until I reached a point of desparation. At its worst, I would fade in and out of sleep with an overpowering sensation of heavy vibration deep inside my head. I felt my brain was under attack by some invisible enemy (as indeed it was).

I won't recount here the trauma of trying to get a diagnosis and doctors who would listen to me. Suffice it to say that I will be eternally grateful that a bulls-eye rash showed up on my leg to give me a clue (even though 4 doctors dismissed it before I found an LLMD).

I was on abx for 10 months with a rotating repertoire of regimens. I did great on amoxy for awhile, and then relapsed. I did weeks of doxy, flagyl, levaquin, and a few others I can't recall. I saw very marginal improvement (if any) and began to despair of a solution. Finally, my LLMD ordered IV Rocephin for me, and I eventually talked him into a 10 week dose. I finally saw some noticeable improvement. If there was such a thing as a turning point, it was this -- although the progress remained extremely slow. I followed up with some other orals for a couple of months, and finally felt right about going off of them.

That was 9 months ago. I now am off all prescription medications and am continuing to see improvements -- now to the point that I feel normal virtually all of the time. It's been about 3 months since I had any fatigue to speak of, and at least 2 months since I had that hallmark "buzzy" sensation that made me feel less than human.

Guess what! I feel human now!

The progress has been agonizingly slow, and there were countless days that I thought there WAS no progress, or that I was going backwards. I really have to look back many months to see the signs of the progress. Even after quitting abx, the improvement was almost imperceptibly gradual. But now, it is very clear.

I hope my experience can provide some encouragement for folks in the trenches of this terrible battle. Yes, I was very lucky to catch it soon enough that my recovery could happen within the span of a couple of years. I know others have much longer and more courageous battles ahead of them. But I'm convinced it's a battle worth fighting, and that hope is real and that victory is possible.

Please hang in there, everybody! The journey is long, but well worth it. I'm flooded with gratitude to be holding my new baby daughter. She's a testament to the rewards of the battle.

God bless! Life WILL BE good again!

Jeff
Pleasant Grove, UT

Thank you so much for adding your wonderful story of success here!

Congratulations on BOTH accounts...the recovery from Lyme...and the re-birth of your new self...

All my best,
Melanie

On a daily basis I suffered from extreme fatigue, loss of balance, deep muscle pain, numbness of my face, hands and feet, severe abdominal pain, lack of motivation, joint pain (including TMJ), creepy crawly feelings on my scalp, twitching under my left eye, etc. etc. etc. Just walking out to the mail box would require a 2 hour recovery on the couch. Nothing seemed to relieve my symptoms.

I was forever online trying to find answers to my health issues. A long list of possible illnesses started popping up, but nothing really covered everything that I was going through.

I was always an active and healthy person and was declining so fast and I didn't even have the strength to do anything about it. I was so ill myself that I didn't even realize that the rest of my family was falling apart also. Infact, I was so ill that I didn't realize just how sick I was until I started to feel better.

But then, things changed. My youngest daughter had had 2 bulls eyes on her face 3 years earlier. She was treated with 30 days of high dose abx. We were told that she wouldn't need any further treatment. Well, she was fine after the abx and we never gave it a second thought. She was smart, active and very social. Suddenly, all of that came to a screeching halt. 3 years after her treatment, she started getting tremors, couldn't read 3 letter words, had no short term memory whatsoever and was waking in the middle of the night is dripping sweats.

I took her to the doctor and asked if this could be Lyme resurfacing. I was assured that it wasn't Lyme. I wasn't convinced. I came home and started doing research on Lyme symptoms and realized that not only did she have significant Lyme symptoms, but so did my older daughter, my husband and MYSELF!

Finally, an answer! I did some networking and found a ``tick center'' to take my family to. My oldest daughter and I tested positive via PCR on the first try. They found it in my urine, but not my blood. For her, they found it in her blood, but not her urine. My youngest daughter and husband repeatedly tested negative and they wouldn't treat them until they got a positive. (we did eventually move onto another doctor and got them treatment - and by the way finally did test positive)

But back to me.....I cried when I got the results. Not because I was sad. I was so happy to finally have an answer to all of my problems. Then I cried again because I started learning how serious Lyme is and how difficult it is to treat.

The one and only tick that I had ever had was over 20 years ago. Could that have been when it really all started? I vaguely remember being sick back then, but then continued on with a relatively healthy life after that. I also recall about 6 years ago being bombarded on the beach by biting flies. I ended up sicker than a dog. Was that it? Or was that the straw that broke the camels back? Who knows.

I was so scared and anxious to start treatment that when the doctor at the tick center said I would need to go straight to a PICC line due to my neuro symptoms, I never even batted an eye. My older daughter and I had our PICC lines inserted on the same day.

We did 56 days of IV Rocephin and oral Zithromax during that time. I had a slow, but steady improvement. Many of my symptoms had subsided, but I still had the numbness in my hands and the fatigue was slowly starting to return. They assured me that these symptoms would subside over time. I waited a few weeks and moved onto another Lyme doctor and also brought the rest of my crew with me. That is when my husband and other daughter finally started treatment.

The new Lyme doctor drew blood (which did come back still positive via Igenex), but in the meantime put me on 3,000mg Amoxicillian, 1,000mg Probenecid (to keep the abx in my blood stream longer) and 500mg Dynabac. By now I had started the beginnings of my 1,000's of hours of research and knew that I must start to rebuild and support my immune system. While on these abx, I started taking high doses of Garlic, B-100 Complex, Vitamin C, Astragalus Root, Maitake (mushroom), Flax Seed Oil, Milk Thistle, a quality multi-vitamin, Magnesium and a multi-probiotic.

We could no longer afford Dynabac for me, my husband and my youngest daughter, so I was switched to Tetra about 2 months into the treatment with the Amoxi and Probenecid. I stayed on orals for a total of 4 1/2 months. By then I knew that my abx life span had run out and that the only way to really get back on my feet was to continue to strengthen my immune system and to start cleansing all of the toxins and other junk that my body had accumulated over the years.

It was very clear to me by this point that Lyme was just one of the layers to my problems. My immune system was run down by other ``issues'' that I wasn't even aware of at the time and they needed to be addressed in order for my immune system to fully attack the Lyme.

We took everyone in my home off abx and continued to take immune boosting supplements. Then we started with a whole body cleanse. This clears out the colon, kidneys, bladder, lungs, etc. This gets the body ready for further cleanses by getting the route of departure cleared out.

Then we did a liver cleanse. Then we added in another colon cleanse because it became VERY obvious that we had more toxins being removed then our bodies could keep up with. Then we did a parasite cleanse, then back to the liver cleanse again and then parasite cleanse again.

We discovered during all of this time that Candida was playing a HUGE role in our illness. And I mean HUGE role. We cut out all garbage carbs and replaced them with good carbs, but in a low quantity.

We also started eating organic and whole foods. We thought we were relatively healthy eaters until we started breaking things down. We only eat organic, we avoid dairy and red meat and eat only organic boneless, skinless chicken breast. We don't eat anything that has been processed or preserved.

We also started using toothpaste WITHOUT fluoride. Fluoride is devastating on the immune system. We switched to just deodorant. No more antiperspirants for us. Why would we want to keep the toxins in? We only use organic shampoos, soaps, etc.

We are still getting our Candida under control and that will take a very long time. We are very aware of everything that we put in our mouths and notice a huge difference if we don't follow a healthy diet. I am personally working on strengthening my adrenals which took a huge blow from the undiagnosed illness.

I still need to address the metals and cavitations in my mouth, but the biological dentist told me that the grand total would be $17,500. So, that must wait for now.

We have suffered financially during all of this too. We don't have health insurance and as a result of all of the unnecessary tests, meds, etc., we had to file for bankruptcy. We are not letting that get us down. We are stronger as a family and as people individually. We feel better than we have in YEARS and are so much more aware of the little things around us.

We are about 98% better and have been abx free for 6 months now. My husband is back to his normal self, the little one is back in the Gifted and Talented Program, my oldest is a star Soccer player and I am just the happy mom/wife of my wonderful family.

I can't stress enough that a positive attitude is probably the most important ingredient to recovery. I know how devastating this disease is mentally, physically and financially. And, it is very, very difficult to rise above it when it seems like the rest of the world is busy having a life and doesn't have a clue what you are going through. But, you must know that deep down inside, you do have the strength and you will get your health back.

Stay Positive. Smile. People Care.

frenchbraid

When we stopped abx, we were feeling better, but far from perfect. We had basically come to a standstill. We knew we had to take another direction or stay where we were for a very long time.

Most of the cleanses that we use are from RenewLife. Brenda Watson, PhD (www.RenewLife.com) is the developer of this fantastic, well rounded line. We use her CleanseMore (colon), CleanseSmart (whole body: lungs, liver, blood, colon, skin, kidneys, and lymphatic system) and Paragone (parasites). We will be using Candex for the Candida and we use our own liver cleanse. I've posted the recipe before, but I will cut and paste it here:

~~~~~~~

Liver cleanses can be pretty harsh. We have found one that works very well and it is very easy to handle.

Put the following in a blender:

~ One cup of fresh squeezed Citrus: use orange, grapefruit, tangerine, lemon, and/or lime. Make the combination as sour as possible. You can dilute this mixture with purified water.

~ One to two cloves of garlic.

~ One small piece of fresh ginger.

~ One tablespoon of organic olive oil.

~ Blend the above ingredients and drink immediately.

Follow with two cups of a cleansing teas, such as Jason Winters or dandelion tea.

It is preferable to do the liver flush drink in the morning on an empty stomach, and then wait an hour before eating.

It is suggested to do the liver flush four times a year (as the seasons change) or whenever you feel you need a boost. Five days in a row each time is recommended.

Also, a good quality Milk Thistle will help to keep your liver and gall bladder healthy.

A good tip is to put the fruit in the fridge the night before. It is much easier to tolerate the drink if it is chilled rather than room temperature.

~~~~~~~

I should also mention that I was diagnosed in late May of 2003. Our road has been a road with many bumps and 1000's of hours of research. I am very fortunate to have a ND locally who owns his own healthfood store. I am constantly in contact with him.

I also got involved with a homeopathic doctor. I also have a biological dentist.

My favorite expression to describe what we've been through is: "It's like an onion. You need to peel back each and every layer to get to the underlying dominant issue". Leave no stones unturned.

When I finally got real and realized that I wasn't the picture of health that I thought I was and that I could have parasites, Candida, etc., it was only then that the improvements became drastic.

Also, on a lighter note, after doing the liver cleanse, I will never be able to eat a gingerbread cookie again. But, that's OK. Too many of the wrong carbs anyway. LOL

frenchbraid

----------- RESERVED! -----------------------

Best of luck to all of you....hope your long slow recovery is met with the success of our long slow recoveries!

Up to the top to print and read later, thanks!

Logged on to lymenet and found a llmd. I went to him for almost two years. He initially increased my dosage of doxy, and had me do a three week round of Flagyl(750 mg per day), and also put me on his own herbal concoction of medicine which is essentially a modification of the Zhang protocol among other things. Even some of the products he sold me had the Zhang label on them. In addition he also had me do rounds of mgn3, transfer factor, olive leaf extract, and a lot of other natural stuff. He has a vitamin shop in his office.

Looking back I realized I was herxing on the doxy but after six weeks, he switched me to Amoxy due to my report that I still wasn't feeling very well. After one week on the Amoxy my symptoms cleared up. I'm not sure if they cleared up because the herxing stopped or because of the Amoxy or maybe it was a combination of both .

Anyway, I continued on the Amoxy for two months and felt pretty good. I tried stopping the drug but relapsed after 10 days so I immediately got right back on it. I continued to take the natural stuff during this time but it seemed to have no effect one way or another. After another 4 months , the Amoxy just stopped working for me. He switched me back to doxy. The doxy worked pretty well over the next 16 months. I tried discontinuing the drug twice during that period but each time I relapsed- I was able to go 19 days and 7 days during those trial stoppages before I had to get back on the antibiotic.

At this point my first llmd began to suspect that I didn't have lyme anymore and maybe these symptoms were just in my head or something else. He didn't actually cut off antibiotics but would make statements like ``You've had a lot of antibiotics.'' and other hints so I made an appointment with another llmd. This llmd treated me with antibiotics only. He didn't recommend or prescribe any natural stuff except acidophilus - God bless him. He put me on a combo of 400 mg cedax and 250 mg Zithromax once per day after dinner. In addition I continued with the 200 mg doxy per day and a one-week round of Flagyl per month which I still had left over from my first llmd. I continued to feel well on this new combination. In fact I had always responded well to antibiotics and hadn't been sick for more than a few days since I started treatment, except in the beginning. The problem was I was unable to discontinue the darn things.

I did this combination for 4 straight months and for the two months after that I pulsed this combo using the protocol of one-week-on, one-week-off.

On the weeks off I took the following:

1 capsule of Samento (600 mg) - twice a day
2 capsules (750 mg) Immutol (Beta Glucan) - twice a day
1 capsule PYCNOGENOL (75 mg) with 1 ounce of aloe vera juice - twice a day

Of all the herbal stuff I tried , and I tried just about all of them, I found these to be the most effective .

I purchased the Samento from http://www.herbalremedies.com/ ; the Immutol from http://www.immunocorp.com/ ; and the PYCNOGENOL from http://www.vitaminlab.com/ .

The Probiotics I use is called Flora Source which I purchase from: http://www.goldenhealthproducts.com/. It's important to get a good brand IMO because I believe that 75% of the stuff you find at health food stores is dead and worthless. I mix the Flora Source in soy Yogurt and still eat it every day.

Anyway , I haven't relapsed since, knock-on-wood and it's been over a year since I have had any antibiotics. I am completely recovered in every way and even able to enjoy a few glasses of wine without a bad reaction that I used to get during my treatment. I'm not mad at my first llmd and would recommend him highly. He claims that he has an 80% success rate and I have no reason to disbelieve him.

I continued with the herbal protocol for two months . Then for another three months after that , I did two out of three each day (i.e. Samento-Immutol or Samento-Pycnogenol or Immutol - Pycnogenol ) . I no longer take any of these but I have continued with the Flora Source to this day.

Even though I was on antibiotics for almost 2 and a half years, I do not have any yeast problems. I feel my breakfast might have something to do with this which consists of 4 ounces of soy yogurt with one capsule Flora source mixed in. A couple of ounces of aloe vera gel. 1 tablespoon of flax powder. 1 tablespoon of Dr Schulze's Superfood, or 1 tablespoon of brewer's yeast. 2 tablespoons of peanut butter or two tablespoons of tahini butter. Blueberries, papaya, and 1/2 apple. I've pretty much eaten the same breakfast for two years.

Looking back, I should have dropped my first llmd after a year. The rule of thumb is that one should be symptom-free for two months before attempting to quit antibiotics. I had done this several times yet still relapsed. I should have added in the Zithromax-Cedax combo after the second relapse. If you just go back to the same drugs at the same strength, you're just going to relapse again. It's important to be more aggressive IMO. On the other hand, maybe it just takes a long time for some people. Who knows, every case is different.

VERY SPECIAL THANKS to all who have shared their wonderful stories!

Your inspiration is priceless

One was treated fairly soon with doxy & says is cured. I kind of wonder about that one.

The other had lyme for 3 years and nuerological involvement. She did only 28 days rocephin and feels she was cured. I beleive her. She's been sx free for I forget how many years.

I would really like to give back to all or any of you that may have questions about the regimen that I felt finally helped me.

I was one of those chronic Lyme cases that was diagnosed SO late (28 years late) that my LLMD put me on IV rocephin for 8 months.

This killed the migraines but it "might" have increased my candida problems. Then, for the next year I was on ceftin, zithromax plaquenil and doryx (not at the same time).

I couldn't stomach biaxin AT ALL and until I got the candida under control through diet and probiotics, I couldn't stomach the zithro.

I think the abx played a huge role in killing the majority of the keets, however, I truly feel that I started turning the corner when I started alternative therapy.

This included joining a program called AIM (which I'm still on...please do a search under my name for "can't hurt&might help" title where I wrote in detail about the program when I began it last year).

The second thing I started using was something called Master's Miracle de-tox products. I took long baths in this ph balancing soap/neutralizer every day. That helped tremendously.

At that point (last October), I was off ALL abx and trying to conquer the horrific candida symptoms. I used diflucan, nystatin, florastore, bifidus but my gut was clearly still in bad shape.

I also struggled with mild headaches, fatigue, tremors and nausea.

My LLMD told me about a product called Primal Defense (made by a company called Garden of Life). I noticed some slow improvement and so invested in some of their other products:

1) fungal defense
2) Perfect Food (green food powder or pills) that equal up to 5-10 servings of the important raw veggies you need to kill the candida
3)living multi-vitamin

On a comical note, I ended up meeting a guy (thru internet dating) and he worked for this company. We were not a match but he brought me a whole box of their products after I told him about my struggles with Lyme and my belief in the products.

Scarily enough, I was more psyched to have all of these free vitamins/supplements than to have a second date!

Anyway, I just want to give hope to the newcomers and people still struggling. There is a light at the end of the tunnel.

I think different protocols work for different people but I want you all to know that I'm living a healthy happy life and it is possible to get this wretched demon out of your bodies!

I'm starting a new job on January 3rd. I exercise 3-5 times a week. I sleep soundly through the night. My obsessive compulsive issues are down to the bare minimum.

The only remaining lingering symptom is an occasional pop in my jaw when I open my mouth really wide. I was fitted for a night guard so, hopefully, that will alleviate that problem.

Do I believe there's some keets still lingering in my body? Absolutely. The difference is, though, they're not having a party. They're sitting in the corner wearing a dunce cap.

If anyone would like to contact me directly with questions, or even just to vent, chat or cry, you can contact me at [email protected].

I want to be strong for all of you the way you were strong for me.

With love & hope,

Susan

My husband and I were beginning to wonder if anyone ever actually got "well".

Thought these belonged here also.....they were encouraging to me.

I feel like I am heading in the right direction but not there yet...........

robi

My grandparents have 2 friends who had lyme for years(don't know how many) and they are now completely symptom free.(I'll ask about their treatment,syptoms & post back here.)

Okay, disclaimer: I'm not 100% and never will be now, 'cause I ended up with Parkinson's - for real, not a misdiagnosis. So far it's only got my right hand a bit... so I can't lightning-edit/repost/riposte like I did here in my heyday and Lyme-nadir. But if I only use my left hand, I can type about as fast as many can with both

Now the goodness: it's been a long time since I had abx. Long time since Lyme symptoms. How long? I don't remember, that's how long!

Okay, okay... lemme look it up here... oops - bad Lymie! Poor recordkeeping... musta been brain fog. Well, it sez here that the P diagnosis was in June last year, and that was after all the 'normal' Lyme stuff (for me) was done... so I reckon it's been a year or so.

Heck, I thought it was a year in January! Just goes to show... when they diagnosed Parkinson's, they figured they better check in on my brain - so I got to spend a day with a very nice man doing Cognitive Testing. That was fun! Well he was a little concerned because I tested "superior" (to what?) in all his little boxes except one... but I don't rememb... oh yeah, it was "short-term memory". And after that we went a little bit farther down the trail, and there was another one! Except this one was white, not purple like all the rest.

And that's what I did on my summer vacation. Yes, that's how I got up there.

Butt seriously, folks, I'm well and cognizant and very, very active... and getting more so each week.

Now if y'all wanna hear how I got well, somebody try to find my post wherein I explained that. okay? Test out the search function... I'm all out of time, I have a report to finish tonight for pay. If nobody finds the post and someone wants the data, somebody email me... by then I'll have spare time and will either find it or re-invent it again.

Happiness and wellness to you all, especially re-ticked Tutu and TinTin and the rest of the old gang who knew me when I was just a keyboard spirit.

Dan

Congrats to your good health!!!

I wonder if you have seen this or might be interested:
http://news.bbc.co.uk/2/hi/health/4051951.stm

Take care,

I had Lyme almost 17 years undiagnosed, along with erlichiosis and bartonella. Were not a pretty sight, as described in previous post. Life pretty well shot, and so was I.

I was so sick that we eased into abx slowly so I wouldn't herx too badly. Gradually worked up to the full combo. Also took a several Chinese herbs, which helped immensely with managing symptoms and herxes.

First round was 16 months. Took time for infection to do its damage and weasel into the recesses of my body; took time for abx to do their job too. I got well enough that I went off abx. Off ten months, then had a minor relapse, aggravated by stess (bought fixer house). I was no where near as bad as before, but enough to know I needed to go back on abx.

Ten more months, a different combo this time, and I was doing so much better I couldn't beleive the difference. I am probably more active than most people my age.

Dr said that it is possible I could relapse again, but that each time I am treated, the time will be shorter, my immune system gets stronger and my functional level gets higher.

It worked: some things improved rapidly, some have taken longer. Abx gave my body chance to begin to heal on its own. I am doing professional level work again part-time(I am a field scientist). I can hike mountain trails for miles and still cook a meal and tend to the house and animals when I get home. I not only read novels and technical articles, I write and it actually makes sense. I go out with friends or family. I go to a conference once in a while, and the occasional concert.

I still have some things I have to deal with: a little tinnitus, and hyperacusis is still an issue, but it is nowhere as bad as it was, and is still improving. Klonopin and earplugs helps with what is left. I am careful not to get overtired, but hey, that is just good common sense for anybody, especially my age (62).

When I was finally diagnosed, I determined I'd do whatever it took to get well. Won't call myself cured, but I do consider myself "well". It was worth the effort, every pill, every herx, the effort of physical therapy to regain strength and function.

Got a great photo of me standing at the top of a mountain in hiking boots and a hard hat. Never thought that would happen again. Next is the kayak...

My life had never been particularly difficult. In fact I often felt guilty that others appeared to be struggling so ,while for the most part, I seemed to sail smoothly along. Of course I had my little ups and downs but never really experienced the tragic in life.

About 17 years ago, as I was driving to work one day, I vividly remember a conversation I had with God. Dear God , I said, I am truely grateful for all the good in my life but I feel as if I am spiritually stagnant, not growing, learning and helping others the way I feel I should be. So...if I need an experience to help me evolve and grow, please....just don't make it too difficult to bear. Looking back, I can't believe I was saying this! Little did I know what I was about to experience.

As the year progressed, I gradually began to acquire odd unexplainable symptoms, such as tingling and numbness in various parts of my body, lower back pain, headaches, stiff and painful finger joints and fluctuating anxiety. I remember visiting our general practioner for tingling and numbness in my arms and hands. Without testing of any sort I was handed valium. Of course, the valium did not help.

During this time I was working in the cafeteria where my small children attended school. This worked out well as I had the same schedule as my children. When school let out for the summer that year, we looked forward to our traditional activities....camping and boating. I will never forget the camping trip where my life was changed forever. One morning I woke up in our camper and felt extremely ill. It seemed as if I had the flu but the symptoms were in some ways atypical. I was very weakened and sick but yet I could not sleep. What was the most unbearable to me however, was the free floating anxiety or panic....for no discernable reason. I would find myself pacing the floor, desperately trying to get away from it. I remember saying to myself that I would not wish this experience on anyone...not even my worst enemy.

In the weeks and months to follow, I would plead with my dear family , who was so supportive and understanding ( even though they couldn't really understand ), to just put me away in a mental institution because I felt as if I was losing my mind and I did not want to be a burden. I made an appointment with our family doctor and was given three weeks of antibiotics...just to be sure.....in case I had Lyme Disease. This was around 1989. They did not test me for Lyme at this point. I was told that it would be too early to show accurate results. It was assumed that if I did have lyme that it must be from a recent bite. However, I feel the illness had been simmering in my body for quite some time. The treatment did not seem to touch my symptoms at all and in fact, I felt worse. The panic/anxiety became so intense that I was prescribed tranquilizers.

For several months, when I was at my lowest point, I was unable to care for myself or my children so we temporarily moved in with my husband's parents while my husband stayed at our home to continue working. Then the doctor decided that depression must be my problem so he prescribed antidepressants. He informed me that if needed, I could take up to three at a time. That night I did end up taking three pills because they didn't seem to be working and in fact ended up making the situation worse. I woke up in the early morning in a state of fear and with the thought that I needed help. As I went to the top of the stairs to call for assistance, I fainted and fell down the stairs. My seven year old son called the ambulance which took me to the hospital. At the hospital the doctors performed several tests, including a CAT SCAN of the head. When the doctor found nothing obviously wrong with me, I was asked what I liked to do in my spare time. I told him I enjoyed boating with my husband. His only suggestion, before he sent me home, was to take more rides on the boat with my husband and that this would most likely make me feel better.

When summer came to a close, it was time to return to work at the school. I was barely able to function but wanted to press on for fear that if I gave up and quit that my life would be over. At least this way, I thought I could keep up some sort of normalcy. My coworkers were not very understanding.....to say the least. At times I was so lightheaded and weak that I would immediately have to lie down on the cement floor in the stockroom to get the blood flow back to my head. With me, it wasn't a matter of sleepiness but a simple inability to stay upright for very long. The women I worked with would say to me...."well , we get tired too sometimes you know, but we don't have to lie down!"

Time went by ,as I struggled every day to function, and I was diagnosed with Chronic Fatigue Syndrome. Even though there was no cure, it felt good to have some diagnoses besides depression. I knew something was seriously wrong with me and that it wasn't just "all in my head". Actually, most of it was in my head, but in an organic way...not psychologically. Every couple of weeks a strange new neurological symptom would add itself to the others already in my repertoire.

One of the most difficult parts was that most people just did not understand. How can anyone be so sick for so long while the doctors can't find any concrete cause? I can't blame them really. One has to have had this disease to appreciate the full implications of it's diabolical fluctuating nature. Because I didn't want people to feel that I was lazy or mentally ill, I set out to prove that I was really and truely organically sick. This drive led me to begin researching the vague diagnosis of Chronic Fatigue Syndrome (CFS). I would bring all my research to my doctors, hoping desperately that they would take an interest. My family doctor was very supportive but all the specialists I was sent to told me to accept my diagnosis, that I was depressed and why was I doing all this researching? The doctors would tell me that diabetics for instance...they accept their disease and get on with their life so why couldn't I do the same. My neurologist told me that I should stop all the researching because I wouldn't want her to get the wrong idea and that other doctors would also get the wrong idea about me. She was insinuating that I was crazy. I went home that day in tears. No one who is sick should have to be treated this way. Many patients with vague diagnoses , such as CFS and Fibromyalgia, often express the idea that they almost wished they had cancer so they would be taken seriously. Some have even expressed the thought that at least with cancer , many die and get it over with.

After 8 years of having "Chronic Fatigue Syndrome", my research led me to Lyme Disease. I noticed the symptoms of CFS and Lyme were extremely similar and decided I wanted to check this out. I made an appointment with a lyme literate doctor and began my still ongoing recovery. I was tested for Lyme Disease by this doctor but the results were negative. However, I was treated anyway based on my history, symptoms and the fact that I lived in a very endemic area. At first my symptoms became worse, as I was warned. I was told that this was a good sign and meant that the antibiotics were hitting the target. I was on a high dose of oral doxycycline and it took four months before I even began to see any improvement and then finally, little by little, some of my symptoms began to fade away. It was a very slow process with many setbacks and flares....but each month these cycles of flares would be reduced in severity. I learned that the setbacks and cycles were almost always temporary. I would often tell myself not to worry when an old scary symptom would reappear. Usually in three to four days the particular symptom would disappear and another one would take it's place. Again, in my experience, each month the symptom cycles were less and less severe.

After 4 months of antibiotic treatment, I was retested and was now positive. The explanation I was given for this, which makes sense to me.....is that those who are the sickest, most likely have the heaviest load of the lyme bacteria. Many times all of one's antibodies are tied up to these bacteria in immune complexes. When the bacteria begins to be killed off, this frees up some of the antibodies which can now be measured. So...in other words....it is often those who are the sickest and chronically ill who test negative for Lyme Disease when using antibody testing.

Two years ago I had to switch to another doctor who specialized in Lyme Disease. I was begining to slip backwards because of breaks in treatment. I had never really been on consistent long term treatment. This new doctor had me tested with the Bowen test and I tested positive for Lyme and Babesia. Now that I am finally being treated consistently for the lyme and the first time for Babesia, I feel as though I have my life back.

During those many years in limbo, I felt as if I had lost my connection to God. Lyme Disease had pretty severely affected by brain and nervous system which made it difficult even to think....never mind to experience spiritual feelings. I couldn't understand why I would have to go through a trial or experience which would make it so difficult to feel God's presence.

As my thinking became clearer with treatment, my feelings of spirituality gradually began to reappear. I spent more and more time reading inspirational books. I wasn't trying to be healed nor was I asking or seeking anything else material or specific. I just wanted to feel and be aware of the presence of Spirit or God. I wanted the joy and love and goodness I was recieving from God to flow through me and envelope those around me. As I focused in this way, I felt as if I have emerged from an egg into a new world of excitement, happiness, joy and love. So many wondeful people have crossed paths with me and for this I will be eternally grateful.

Intuition seems to have increased, synchronicity abounds and everyone I come into contact with is trying to serve humanity in their own special way. I have improved a great deal and seem to have aquired new abilities that I had never even dreamed of. It's like watching a play unfold....a good play. I now feel as if I have a purpose in life. The thought of growing older and losing vitality now never crosses my mind. I am finding just the opposite to be true. Not that I will now be free of all problems nor am I totally cured but this illness has brought me to a point where I appreciate life and those around me...so much more. While I personally don't believe that God sends evil or trials to us, I think our experiences reflect the degree to which we try to abide in Spirit. We all have a desire to know God and to feel God's love so perhaps when we are focused on the wrong things something inside us creates circumstances to head us in the right direction. So, despite the fact that I still have memory and organizational problems and the world seems to be falling apart around us, I am experiencing a more consistent joy and assurance that in reality God is on the scene but that our real need is to open our awareness to this fact.

Lyme can be a devastating disease but there is always hope....especially when we look for it in the right places. I am sensing...along with a growing number of others, that despite what the media is telling us....more and more people are coming together in the spirit of love and cooperation. This spirit of love is the only thing that will truely heal our lives and the world. While, as many of you know, I feel we need to expose the corruption which is seemingly taking place all around us.... it musn't be with a sense of hate, fear or revenge.

I can actually say, even though the lyme journey has been a very difficult struggle, that if I could, I wouldn't want to change a thing. I feel that the Lyme experience has brought me to a whole new place....one of wonder and amazement.

Thank you!!

Mind you, this is a little boy who was diagnosed with autism, a hopeless 'genetic' disease almost 5 years ago. He's a perfectly normal little boy and you'd never know today he was ever sick, let alone autistic.

What a blessing. My heart is bursting with gratitude for all of you here on lymenet. Thank you so much for your support over this past year.

I'll still be around . . . for a while, anyway.

One Year Ago
Here is my initial post on lymenet about our son, immediately following his lyme disease diagnosis. Very much worth reading, especially if you have sick little ones!

Author Topic: Good News! I see the end of the tunnel and it's bright!
Aniek
Frequent Contributor
Posts: 1253
From: Washington, DC
Registered: Mar 2004
posted 22 August 2005 16:10
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I thought I would share the very, very good news that I appear to have beaten this thing! My symptoms are greatly reduced, I feel healthy, have energy, and just gosh darnit feel good!
Many of you may think of me as a walking advertisement for the muscle relaxer Flexeril. I've been on 30mg a day for about 18 months. Like a bad patient, I noticed my prescription would run out before my next visit. So I decided to take a test and I started to wean myself off the Flexeril.

I'm now down to 10mg and I don't have any increased pain or stiffness. In the past, I've noticed increased pain within 48 hours of going down to 20mg.

The infections I have battled are Lyme, Babesia and Salmonella. Interestingly, the salmonella appeared gone only to reemerge after treating the babs. Salmonella can cause a reactive arthritis.

I've moved through a number of protocols including:
Penicillin
Amoxycillin, Biaxin and Plaquenil
Augmentin, Biaxin and Plaquenil
Augmentin, Levaquin and Plaquenil
Ketek, Artemisinin and Plaquenil
Ketek, Amoxycillin and Plaquenil

Also had Diflucan, Synthroid, Acyclovir (Anti-Viral), Flexeril and most of the treatment. Added Prevacid a few months ago for heartburn.