Added myself to Lymenet success stories...

[Guest guest]

For my 36th birthday, I added myself to the 'Success Stories' thread at

Lymenet. It's been nearly a year of treating with Buhner herbs (after 6

months of antibiotics and a lot of ups and downs during the past year)

and I feel totally symptom-free. I almost went to play football with a

lively group of 20somethings today, am pain-free, moved cross-country,

started a new business, am traveling to the South Pacific for work next

week, and am otherwise having a fantastic time being back to full health

and productivity. I'm not stopping the herbs anytime soon but I'm on

very reduced doses of core protocol and it's managing the illness for me

very well.

I think in a way I'm a textbook case of what Buhner says the protocol

should do, other than the fact that my LLMD thinks I have a serious

problem with metals detoxification and will have to address that

(chelate my high mercury levels) before Lyme is no longer a threat, and

Buhner doesn't address this issue due to lack of published research at

the time the book came out.

I also copied the success stories post to our group " member

histories " files.

Here's my story from Lymenet, sorry about the weird formatting:

Other people have had less success with it than I have, so don't assume

it's a miracle cure for everyone.

I posted here- it was a poll about herbal treatment users:

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=1;t=060406;p=1

and here's what I said about my treatment:

1. Do you have just Lyme? Any coinfections?

Probably

just Lyme, which my doc thinks is quite unusual. Possibly bartonella

based on very mild symptoms but negative on bart testing.. Bad case of

elevated mercury levels and problem eliminating it, can't chelate

without getting Lyme symptoms badly it seems

2. How long have you had symptoms?

6 years prior to

starting treatment

3. What herbal protocols or products have you tried?

Like most users here, I experimented with a lot of different

stuff at various times during the past year for different symptoms or

for candida or for detoxification of neurotoxins from the Lyme spirochetes.

-eleutherococcus tincture when I first started doxycycline at the end of

my 6 years of symptoms, continuing to take it

-detox 'stuff' = bentonite clay drink (yech), later Solaray Detox

formula with alginate,

Buhner protocol (the big three herbs plus

stephania root for a few months

chlorella

garlic (raw frozen, also capsules): too much vomiting, probably helped

control yeast and other stuff

boneset tea (for possible bartonella)

red root tincture (for possible bartonella)

poke root tincture, very temporarily (dangerous stuff, don't self-treat

with this please)

turmeric

milk thistle while recovering from chelation problem

capryl for yeast

GSE for Lyme or yeast and later for ulcer in Buhner's ulcer protocol

oregano oil for yeast (didn't seem to do much)

teasel tincture at times (can't tell if it does a whole lot now when I

take it occasionally, did think I herxed a bit on it at first)

huperzine A recently, doesn't seem to do a whole lot for my remaining

word-recall memory problem

non-herbal products:

EDTA for chelation

methylcobalamine B12 injections

WelChol when I first started antibiotics (not at the same time of day as

antibiotics though) as a neurotoxin binder

undenatured whey

4. What was the dosage and for how long?

Buhner herbs

for just about 11 months so far (after 6 months of antibiotic

treatment), following book pretty closely on this. Did full protocol of

the core protocol for two or three months and then started experimenting

with reducing.

other than the eleuthero, which I have taken for much of that time, I've

tried the other stuff on the list for brief periods, up to 4 months on

stephania root, 4-5 months of Solaray detox formula and 6-8 months on

chlorella, and much shorter periods for the other stuff.

5. Did you take with antibiotics concurrently?

Afterwards?

I started treatment with doxycycline (no Buhner herbs

yet) for 2 months, switched to azithromycin for 4 months and started

Buhner herbs at the same time as azithromycin.

I only took the herbs-plus-azithromycin for 2 months of that, then

stopped the herbs due to something making me feel extra-tired

(azithromycin turned out to be the culprit). Symptoms went away at end

of the 6 months on antibiotics, stopped antibiotics altogether, wasn't

taking herbs at that time. I then relapsed very badly 1 month later.

I then started on Buhner herbs only. Only other antibiotic use: several

months into the Buhner herbs, I took some biaxin for ulcer for 2 1/2

weeks, no visible effect on Lyme symptoms.

I started taking herbs around New Year's of last year. I had lots of ups

and downs but the 'ups' got longer and longer pretty consistently.

I was symptom-free for a few weeks by month 5 of herbs only and

continued to take them while I addressed other problems (ulcer and

dental issues). During this initial period of 'symptom-free' I felt in

absolutely perfect health, had amazingly sharp memory and word recall,

so I have an idea that this will come back again with further treatment.

I then got a less-severe relapse after a mercury-amalgam-removal dental

procedure in June, so I took amoxycillin briefly this summer (5 weeks)

with no visible effect on symptoms, and concluded that these symptoms

could have been mercury and not Lyme, as they're identical to what

happens when I try chelation. Symptoms went away with just herbs since

then. My only remaining symptom is minor memory problem- just very minor

word recall trouble- but it's nothing outside the range of what's

normal for most people.

6. Improvement? None? Modest? Significant?

Cure?

Massive!!!!!!

I'm still on the core protocol but only take it once or twice a day at 3

pills a day (actually it's more like 2 pills of resveratrol and cats'

claw, one manufacturer changed the formulas and is making bigger

capsules since Buhner wrote his book).

I'm also taking adaptogens- eleuthero and schizandra (different times

of day) and experimenting with rhodiola which doesn't seem to do

anything noticable yet. Also taking turmeric for general brain health

and capryl for ongoing yeast problems. Took huperzine A for a month but

it doesnt' seem to do anything so I'm probably not going to continue.

Other than that I'm not taking anything else at this time.

7. Did you relapse after finishing the herbs?

Not

done yet, probably not going to stop anytime soon as I know I still have

this un-addressed mercury problem.

I and my LLMD both assume that I will be at risk of a Lyme relapse till

I get the mercury dealt with as it seems to be related to all of my

relapses (ie chelating always triggers a relapse of Lyme symptoms, and

my one amalgam-removal procedure seemed to do the same thing).

I'm waiting to be symptom-free while on herbs for quite a while before

tackling the mercury with chelation again as I always get sick when

anything happens to my mercury levels.

Here's what I said in another thread about my symptoms:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=060285;p=1#0\

00015

I had been sick for 6 years before starting treatment with 6 months of

antibiotics. The antibiotics didn't do the trick- I relapsed quite

horribly about a month after stopping the antibiotics. I was pretty

dysfunctional by the time I started treatment but I was no where near as

badly off as some of the neuro-Lyme folks.

The symptoms I had were primarily exhaustion, extreme sleepiness, and

severe brainfog, with this odd 'surface' skin pain along my back, some

connective tissue injuries that didn't heal till I addressed the lyme,

and sleep irregularities (either insomniac or sleeping for 14 hours). I

had the really classic neck pain that I think Buhner describes as a

variety of meningitis caused by Lyme. I also had sore eyes (like you

haven't slept enough) and a few other woes I'm probably forgetting. I

couldn't walk due to exhaustion for more than a couple of blocks by the

time I started treatment. I also developed foot pain in both feet that

felt like something was broken, that went away with antibiotic

treatment, and I assume that's Lyme-related too.

My doctor thinks I might be the rare patient to not actually have

(known) coinfections, though during my herbal treatment I got some mild

Bartonella symptoms (roving sharp bone pains) and seemed to respond

to/herx on Buhner's bartonella protocol (which I think would address

some Lyme too, but that's my personal opinion).

I tested negative on the igenex test for Bart and have no babesia or

ehrlichia symptoms so we didn't test for those, though I test very high

in mercury so that's my big obvious complicating factor.