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Old 01-29-2015, 07:10 AM   #1
CajunSunshine
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Default Chronic Lyme Disease – What treatment protocols worked for you?

The information in this thread is for educational purposes only, and as a launchpad for your own research. It is not intended to replace the advice of a Lyme-literate medical professional, who should be consulted in this matter.

I hope that others will chime in with their experiences with Lyme's disease and treatment protocols, and their effectiveness (or ineffectiveness). It could serve as a springboard for personal research, or possibly a road towards wellness that others can explore.

I'll kick this thread off with my own experiences with treating chronic, late-stage Lyme's disease.

But first, a few words about herbal alternatives that I would certainly try, if I had Lyme's disease today:

15 years ago, when Lyme's was not as well studied as it is now, herbal alternatives were being explored. Today, an herbal protocol developed by Stephen Harrod Buhner is available http://www.buhnerhealinglyme.com/ and is thoroughly discussed in his book, Healing Lyme. His website is very informative.

He has authored other books about co-infections as well. http://www.buhnerhealinglyme.com/bookstore

Buhner reports that his protocol has good results: 75% recover completely, 10-15% are relieved of most or all symptoms, 5-10% are relieved of some symptoms, 5% have no response.

Also, there's this... http://www.buhnerhealinglyme.com/bas...effectiveness/

Here are some updates to his book, along with a list of Lyme-literate practitioners with experience in this protocol: http://www.gaianstudies.org/Lyme.html


This is what happened to me fifteen years ago:

I learned (the hard way) why Lyme's is called "The Great Imitator." It can mimic more diseases/disorders than anything else known to medical science. Because there is no known 100% conclusive medical test to diagnose for Lyme's (too many false negatives), it is often diagnosed by clinical symptoms — and sometimes by the Herxheimer reactions (more on that in a bit). This bacteria is notorious for escaping tests (even multiple ones).

Years ago I had chronic Lyme's and didn't realize it; I thought it was this... or that... Before it was all over with, I was begging to be shot. Late-stage Lyme's is seriously bad juju.

Because there were no Lyme-literate docs around at the time that were within affordable travelling distance, I treated myself (fortunately with success). I learned of an unorthodox treatment from an online message board. One of the members was a doctor who had chronic Lyme's disease and performed a successful experiment on himself with a radical protocol. He posted day-by-day details about his journey with treating Lyme's. It sounded extreme but it made sense to me, and I was desperate enough to try it.

I followed the doctor's experimental protocol closely because it seemed to work so well for him. Part of my regimen included taking tetracycline for a period of 1 month, then discontinuing it. I would have taken Doxycyline (like the doctor did) if I could have... More on that later. Immediately after discontinuing the the tetracycline, I hit it with metronidazole (Flagyl) for a month. I repeated this cycle continuously for almost a year before I finally beat it. I waited until I was symptom-free for two months before discontinuing the meds.

I used fish meds for both drugs. I don't remember what the dosages were or the name of the message board, and I'm away from home (and my records). But some diligent time spent with Google may help with that.

The idea was to kill all of the Lyme bugs that were the spirochette form AND the ones that were hiding behind the blood/brain barrier in the cyst form. When Lyme is in the spirochette form it can be killed with doxycycline or plain tetracycline (the survivors end up in cysts and hide in the nervous system and the brain where the tetracycline/doxycycline can't reach them). The metronidazole can kill the cysts that are hiding behind the blood/brain barrier (spirochettes are unaffected by it). Over time, the repeated cycles of alternating meds cleaned up any and all "escapees."

Typically, a chronic Lymie may go through Herxheimer reactions when the bugs are hit with the right antibiotic at the right time for the spirochettes and for the cysts. The dead bugs are apparently very toxic, especially when they die in large numbers. Gaaah... for me it was so bad I thought they were going to lock me up, feed me fish-head soup and bones...and throw away the key. (Maybe I should have gone a little slower with it? One poster said that the Herx was too much for him, and he went med-free on weekends.)

It's been about 15 years ago since I did this, and I am happy to say it worked. Either I have been cured, or it has been one heckofa long remission. The track record of conventional treatments is rather poor for late-stage Lyme's, so I must say this is quite an accomplishment.

By the way, if you can't find doxycycline (it's getting scarce and ridiculously expen$ive), it is also available via BIRD meds (good stuff and the price is right). It's in powdered form, but can be easily transferred to empty capsules. I recently got some from Jeffers:www.jefferspet.com (800) 533-3377 for a friend. Jeffer's also has metronidazole.

Doxy is much better than old-fashioned tetracycline. One of the reasons why I wanted the doxy is that a smaller dosage can be used to get the same results as a greater quantity of tetracycline. 15 years ago, I tried to find it in fish meds, and couldn't source it at the time.

Fortunately the notorious teeth-staining aspects of tetracycline will not affect adults. However it affects very young people who have not had all of their "adult teeth" in yet and will stain the developing teeth that have yet to emerge, which is why it is never prescribed for children.

The metronidazole can be harsh on some individuals. Fortunately I was able to tolerate it then (now, I cannot).

And now for the dry stuff: I am not making any health, medicinal or disease related claims in this post. This post is for educational purposes only, and are in no way intended to substitute for the advice of a health care professional, who should be consulted in all medical matters.



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Old 01-29-2015, 08:07 AM   #2
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I'll chime in here with one of my experiences.

Go back more than 15 years... more than 20 years, to be exact. In 1990 average people just had not heard about Lyme Disease. Back then, I had three adventurous, forest crawling, little girls who came home with all sorts of critters, furry and otherwise. We did nightly tick checks as they came out of the shower.

One night, I found a tick clinging to my youngest's ankle. A little nail polish remover was enough to make it let go, and it was flushed away. A few days later, however, the area around the tick bite looked more like a human bit her leg - what we now know as the tell-tale ring, or bullseye, that indicates Lyme. Not knowing about the significance of the red mark on my child's leg, but knowing it can't be good, I called the doctor.

By an amazing stroke of luck our pediatrician was studying Lyme. At a time when most doctors would not have recognized the bullseye rash, she knew exactly what it was. In fact, she later became something of an expert on the disease.

Because we caught my daughter's Lyme so early, it was quickly cleared with oral meds (it was so long ago I do not know exactly what was prescribed). We were incredibly lucky. As the years have passed I have watched many people develop mystery diseases because they were completely unaware they had contracted Lyme, and it was left untreated.
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Old 01-29-2015, 08:27 AM   #3
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Lyme & chronic Lyme are becoming an increasing concern in many areas. Not enough doctors are aware of the necessary protocols & many shove tranqilizers, antidepressants & such at patients. Those CAN play a role in pcoper Lyme treatment but they're only a small part of the overall picture. A lot more work needs to be done - in education of patients & health care staff & protocols need to be studied & improved.
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Old 01-29-2015, 10:51 AM   #4
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We had a similar experience to FB. Our daughter was about 3 and developed a fever and rash on her face. The pediatrician did the typical treatment for viral stuff, a cream for the rash, fever reducer, etc. After a week it had not cleared. He still thought it was viral, we thought something else was going on and sought a second opinion.

We went to our primary dr, and as soon as she walked in the room, she said it was Lyme. Her daughter had just gone through it. As it turns out the rash on her face was about a third of the bulls eye around a bite that had occurred on her scalp. Her dense hair hid the rest of the ring, but once we knew to look for it, it was identifiable. We started antibiotics right away, and low and behold the blood test confirmed the diagnosis.

She's been symptom free since, as best as I can tell.
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Old 01-29-2015, 11:17 AM   #5
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We had one patient who got Lyme paralysis. The tick was in his hair. My husband found it in the hospital. As soon as it was removed he started to improve.

---------- Post added at 11:17 AM ---------- Previous post was at 11:12 AM ----------

I've had it more times than I have fingers and toes, because the ticks are everywhere in the area I lived in. And the deer sleep right next to my old front and back door. Snuggle up into the fern beds. Step out and the damn things jump on you. My garage was separate from the house, and a walk to my car was enough.
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Old 01-29-2015, 11:41 AM   #6
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"Healing Lyme" is a most excellent resource covering not only lyme but many other tick borne diseases. A few years ago Max and I both picked up Rocky Mountain Spotted Fever from a nest of seed ticks. It was a miserable experience and to this day I believe I have remnants of its reign. We were treated with doxycycline for several weeks. From 'Healing Lyme', I put together an herbal tea that we drink periodically. I couldn't locate all of the herbs known to keep those bugs at bay by boosting the immune system so I made do with what was available. I make it in larger batches. It's not a cure, it is a tea made up of immune supporting ingredients to help your body defend itself.

Immune Support Tea

2c Boneset Herb Cut and Sifted
2c Eleutherococcus Root Cut and Sifted
1/2c Ashwagandha Root Powder
1/2c Astragalus Root Powder
1/2c Whole Milk Thistle Seed


I brew this with a tablespoon or so of spearmint and a good dose of honey.

---------- Post added at 09:41 AM ---------- Previous post was at 09:39 AM ----------

I have some friends who have used this tea along with nutritional support (with the support of their MD) as they have undergone cancer treatments and they feel they had fewer undesirable side effects.
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Old 01-29-2015, 11:58 AM   #7
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It was funny. Back in the 70's and 80's ticks were part of your life. On dogs always. I even recall a gift in a wrapped box that I had in my closet. When I opened it, a tick had crawled in and it was full of nymphs. They dropped off the dogs when they were gorged.

And then suddenly they weren't just annoying ticks, they were ticks that carried lyme, as in Connecticut city of LYME.

That is happening here. Hunters don't always realize that they have contracted Lyme from the ticks they merely regard as annoying.
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Old 01-31-2015, 03:42 AM   #8
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Hagar's wife again...

Thanks SO much for these posts. I have read and will re-read them to familiarize myself with them. I also want to make a copy for his doctor. He switched doctor's when the first doctor kept insisting the fever/chills/chest congestion was the flu. The new doctor has worked as a missionary in Africa, so his 3rd world country experiences fit this area. And he listens. And he doesn't get all pissy when Hagar mentions some other kind of treatment or an article he has read. No one has mentioned the Herxheimer reactions to him, that makes great sense for all of the crazy instances when he was crawling the walls with high fevers and violent chills. The first doctor acted like it was made up stuff.

Anyway, many thanks for all of the information and experiences shared....we need all the help we can get.
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Old 01-31-2015, 09:42 PM   #9
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Please do stay in touch, and let us know how things progress. (Yes, progress! Knowledge is power.)





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