Re: what next after Buhner protocol?

[Guest guest]

Try a Coil Machine.....Many success stories here in NE........

Try Colloidal Silver, Ambrotose.......

Jay

[ ] what next after Buhner protocol?

Hi All- I wanted to get your feedback. I've done both zhang protocol (8 months)

with no improvement. I've been on sarsparilla and devils claw for past 18 months

and cats claw for 1 year-- and still having major neuro issues. I've also had

all my silver fillngs removed in 2008. Done multiple candida diets (very strict

no grains or fruits for 8 weeks and then added brown rice some things after

that..)combined with nystatin ( I tested positive for yeast according to great

plains labs organic acid test). Was also on LDN for 1 year . I did feel I was

getting better this summer with eye pain going away after being on

sarsparilla/devils claw--but major setback this fall with increase in old neuro

symptoms including eye pain. Heavy brain fog-muscle twitching , jerking, jumpy

nervous system etc. I decided to go off the combo of cats claw , sarsparilla,

devils claw since I had lower back pain for past 2 months and going the bathroom

4X/night (worried about info of sarsparilla causing issues with kidneys). I " m

disappointed that after a year on cats claw and 18 months on sarsprilla I'm

still having these issues. I could not take reservatrol (caused my twitching to

get much worse). I wonder if I did not ramp to full dose ( I did on cat's claw

for at least 2 months). Since I've had these symptoms for 10+ years and neuro

symptoms have gotten bad in past years including optic nerve atrophy/optic

neuritis in right eye, wondering if I should take the plunge and try abx? Wanted

to hear thoughts on that...........my history was a FMS diagnosis 12 years

ago-bad neuro symptoms past 3 years which led me down lyme path. (positive lyme

according to IGENEX). Other option would Dr. Jernigan's holistic approach. I

worry about long term bad effects of abx on my system. Ive always been a

sensitive person. And now I have yeast issues whose symptoms overlap with

lyme..... also theory of our immune system health is based on in our gut and

don't want to totally destroy that. Thoughts anyone? So so so tired of this!

[Guest guest]

There are a lot of people getting their lyme in remission with alternative

treatments. See the treatments folder of my free lyme resource cd for more

information

www.lyme-resource.com

You can lead a person to a fact, but you can't make them think! -

> Re: [ ] what next after Buhner protocol?

>

> Try a Coil Machine.....Many success stories here in NE........

> Try Colloidal Silver, Ambrotose.......

> Jay

> [ ] what next after Buhner protocol?

>

>

>

> Hi All- I wanted to get your feedback. I've done both zhang

> protocol (8 months) with no improvement. I've been on

> sarsparilla and devils claw for past 18 months and cats claw

> for 1 year-- and still having major neuro issues. I've also

> had all my silver fillngs removed in 2008. Done multiple

> candida diets (very strict no grains or fruits for 8 weeks

> and then added brown rice some things after that..)combined

> with nystatin ( I tested positive for yeast according to

> great plains labs organic acid test). Was also on LDN for 1

> year . I did feel I was getting better this summer with eye

> pain going away after being on sarsparilla/devils claw--but

> major setback this fall with increase in old neuro symptoms

> including eye pain. Heavy brain fog-muscle twitching ,

> jerking, jumpy nervous system etc. I decided to go off the

> combo of cats claw , sarsparilla, devils claw since I had

> lower back pain for past 2 months and going the bathroom

> 4X/night (worried about info of sarsparilla causing issues

> with kidneys). I " m disappointed that after a year on cats

> claw and 18 months on sarsprilla I'm still having these

> issues. I could not take reservatrol (caused my twitching to

> get much worse). I wonder if I did not ramp to full dose ( I

> did on cat's claw for at least 2 months). Since I've had

> these symptoms for 10+ years and neuro symptoms have gotten

> bad in past years including optic nerve atrophy/optic

> neuritis in right eye, wondering if I should take the plunge

> and try abx? Wanted to hear thoughts on that...........my

> history was a FMS diagnosis 12 years ago-bad neuro symptoms

> past 3 years which led me down lyme path. (positive lyme

> according to IGENEX). Other option would Dr. Jernigan's

> holistic approach. I worry about long term bad effects of abx

> on my system. Ive always been a sensitive person. And now I

> have yeast issues whose symptoms overlap with lyme..... also

> theory of our immune system health is based on in our gut and

> don't want to totally destroy that. Thoughts anyone? So so so

> tired of this!

>

>

>

>

>

>

[Guest guest]

If it were me, I would not take ABX and if you're having so much trouble

with the sas, restart herbs and muscle test yourself for the sas. Maybe you

should stay off that one for awhile - see how the others do.

_____

From:

[mailto: ] On Behalf Of y093666

Sent: Sunday, November 08, 2009 12:20 PM

Subject: [ ] what next after Buhner protocol?

Hi All- I wanted to get your feedback. I've done both zhang protocol (8

months) with no improvement. I've been on sarsparilla and devils claw for

past 18 months and cats claw for 1 year-- and still having major neuro

issues. I've also had all my silver fillngs removed in 2008. Done multiple

candida diets (very strict no grains or fruits for 8 weeks and then added

brown rice some things after that..)combined with nystatin ( I tested

positive for yeast according to great plains labs organic acid test). Was

also on LDN for 1 year . I did feel I was getting better this summer with

eye pain going away after being on sarsparilla/devils claw--but major

setback this fall with increase in old neuro symptoms including eye pain.

Heavy brain fog-muscle twitching , jerking, jumpy nervous system etc. I

decided to go off the combo of cats claw , sarsparilla, devils claw since I

had lower back pain for past 2 months and going the bathroom 4X/night

(worried about info of sarsp! arilla causing issues with kidneys). I " m

disappointed that after a year on cats claw and 18 months on sarsprilla I'm

still having these issues. I could not take reservatrol (caused my twitching

to get much worse). I wonder if I did not ramp to full dose ( I did on cat's

claw for at least 2 months). Since I've had these symptoms for 10+ years and

neuro symptoms have gotten bad in past years including optic nerve

atrophy/optic neuritis in right eye, wondering if I should take the plunge

and try abx? Wanted to hear thoughts on that...........my history was a FMS

diagnosis 12 years ago-bad neuro symptoms past 3 years which led me down

lyme path. (positive lyme according to IGENEX). Other option would Dr.

Jernigan's holistic approach. I worry about long term bad effects of abx on

my system. Ive always been a sensitive person. And now I have yeast issues

whose symptoms overlap with lyme..... also theory of our immune system

health is based on in our gut and don't wan! t to totally destroy that.

Thoughts anyone? So so so tired of this!

[Guest guest]

honestly, I believe anitbiotics are necessary if you have neuro problems -

having tried many treatments (with LLMDs who use herbal as well ABX

approaches)for the past 10 yrs., ONLY the combo of Doxy and Tindamax gets to the

deeper neuro manifestations of Lyme in the brain.

Edith

[Guest guest]

Hi - since you said you had an FMS dx many years ago, what's working for my FM

is clindamycin abx. I did 150mg every 6 hours around the clock in the beginning,

then when I herxed after a month, I dropped back to 150mg 2x/day. It took down

the FM 100% in a week! It still works. But keep in mind we're all different when

it comes to our response to meds.

Also, for eye pain and all eye symptoms, I have been able to treat successfully

with mangosteen juice, an anti-inflammatory antioxidant juice. There are lots of

brands - I drink the Ultra mangosteen one with 70 minerals added. If you try it,

go slowly, as it can be powerful, and drink a lot of water. All eye symptoms

cleared up in 24 hours! - Robin

[ ] what next after Buhner protocol?

Hi All- I wanted to get your feedback. I've done both zhang protocol (8 months)

with no improvement. I've been on sarsparilla and devils claw for past 18 months

and cats claw for 1 year-- and still having major neuro issues. I've also had

all my silver fillngs removed in 2008. Done multiple candida diets (very strict

no grains or fruits for 8 weeks and then added brown rice some things after

that..)combined with nystatin ( I tested positive for yeast according to great

plains labs organic acid test). Was also on LDN for 1 year . I did feel I was

getting better this summer with eye pain going away after being on

sarsparilla/devils claw--but major setback this fall with increase in old neuro

symptoms including eye pain. Heavy brain fog-muscle twitching , jerking, jumpy

nervous system etc. I decided to go off the combo of cats claw , sarsparilla,

devils claw since I had lower back pain for past 2 months and going the bathroom

4X/night (worried about info of sarsparilla causing issues with kidneys). I " m

disappointed that after a year on cats claw and 18 months on sarsprilla I'm

still having these issues. I could not take reservatrol (caused my twitching to

get much worse). I wonder if I did not ramp to full dose ( I did on cat's claw

for at least 2 months). Since I've had these symptoms for 10+ years and neuro

symptoms have gotten bad in past years including optic nerve atrophy/optic

neuritis in right eye, wondering if I should take the plunge and try abx? Wanted

to hear thoughts on that...........my history was a FMS diagnosis 12 years

ago-bad neuro symptoms past 3 years which led me down lyme path. (positive lyme

according to IGENEX). Other option would Dr. Jernigan's holistic approach. I

worry about long term bad effects of abx on my system. Ive always been a

sensitive person. And now I have yeast issues whose symptoms overlap with

lyme..... also theory of our immune system health is based on in our gut and

don't want to totally destroy that. Thoughts anyone? So so so tired of this!

[Guest guest]

I have not tried abx yet--headed that direction though. I have a lyme

consulation with my PCP in January. He is not LLMD/expert but does treat lyme.

He said in my case of neuro symptoms he would prefer IV abx, but does not

prescribe IV for risk of losing his license in our state (not laws to protect

like CT). He follow's Burrascano's (sp?) protocol and individualizes to the

patient. He has know me for 15 years and originally diagnosed me with FMS. It

is obviously not FMS (although that is just a diagnosis like the rest, based on

a collection of symptoms) since I now have deep neuro and optic neuropathy. He

said he will retest for Lyme before we get started. I do have an IGENEX positive

test for long term exposure ( 2 lyme bands positive- I did the test 3 years ago

when optic neuritis hit and neuro symptoms and then began zhang etc alternatie

lyme treatments).

Robyn- I'm glad you're still on this board! I know you've been urging me to take

the mangosteen juice for awhile! I need to add that to my long list of

supplements. Are you saying you're on abx continuously and taking buhner herbs

on top of it?

For those of you on abx- are you still on continuously as well? Did they resolve

your neuro symptoms? Do you regress when you come off of them/or get worse

symptoms on relapses?

I remember my daughter who as a baby got bad ear infections. Abx would solve the

problem immediately, but then it would re-occur with a vengance-she'd be up all

night crying etc. I gave up on abx and turned to alternative/homeopathic MD-

within 4 months her problems resolved completely and she never had another ear

infection. Her body learned to fight the infection. The ear infections took

longer to resolve but did not come back with a vengance and symptoms got less

and less severe until resolved completely. I worry about that with Lyme abx

treatment. If you're body can't learn to fight the infection, does it ever

completely resolve. Thoughts anyone?

>

>

> honestly, I believe anitbiotics are necessary if you have neuro problems -

having tried many treatments (with LLMDs who use herbal as well ABX

approaches)for the past 10 yrs., ONLY the combo of Doxy and Tindamax gets to the

deeper neuro manifestations of Lyme in the brain.

>

> Edith

>

[Guest guest]

I hope you're wrong Edith - I do not want ABX - just tears my ammune system

up. I am going to stick with CC and Knotweed, some salt and the supplements

that push thst thru the blood brain barrier.

Hope it works! Anyone else doing this successfully and what are you using?

_____

From:

[mailto: ] On Behalf Of laofopar

Sent: Monday, November 09, 2009 8:48 AM

Subject: [ ] Re: what next after Buhner protocol?

honestly, I believe anitbiotics are necessary if you have neuro problems -

having tried many treatments (with LLMDs who use herbal as well ABX

approaches)for the past 10 yrs., ONLY the combo of Doxy and Tindamax gets to

the deeper neuro manifestations of Lyme in the brain.

Edith

[Guest guest]

Given many say you need to be on abx for years to improve.. I do wonder if the

same hold true for herbs and I'm not giving it long enough. I do worry about

causing damage about long term abx.. and some improvement, but not " cure " . I

have good periods and bad periods over the past 18 months on the buhner protocol

part of which was combined with LDN. I exercise everyday, work full time, run

house hold and function (for the most part). I do seem to have bad periods and

bad days. Given I have lost some eyesight 3 years ago .. I do worry about geting

worse/ and again wondering if I need to bit the bullet and do abx. I do want to

keep functioning though and worry about all of the horrid herx stories of abx

and people who get ReALLy sick. If it does work, than it would be worth the

pain. Dr. Jernigan's theory of herxing not being great for the body and the

toxins of lyme causing more damage than lyme itself makes sense to me. I know

some who have been on abx for years and saw improvement but are still

homebound/note as well as I am. So this all makes me wonder. My Dr./PCP (who is

an alterative guy) says he does see patients get better on abx and if it were

him and he thought he had lyme , he'd be on abx!

Edith- you mention being on off/abx for 10 years.. did it solve your neuro

symptoms.. what was your experience with abx and now buhner?

Thank you!

>

> I hope you're wrong Edith - I do not want ABX - just tears my ammune system

> up. I am going to stick with CC and Knotweed, some salt and the supplements

> that push thst thru the blood brain barrier.

>

> Hope it works! Anyone else doing this successfully and what are you using?

>

>

>

> _____

>

> From:

> [mailto: ] On Behalf Of laofopar

> Sent: Monday, November 09, 2009 8:48 AM

>

> Subject: [ ] Re: what next after Buhner protocol?

>

>

>

>

>

> honestly, I believe anitbiotics are necessary if you have neuro problems -

> having tried many treatments (with LLMDs who use herbal as well ABX

> approaches)for the past 10 yrs., ONLY the combo of Doxy and Tindamax gets to

> the deeper neuro manifestations of Lyme in the brain.

>

> Edith

>

>

>

>

>

>

>

[Guest guest]

One thing you may want to consider is heavy metal testing. Everyone that

grew up with " silver fillings " which are 50% mercury by weight, or that has

been eating plenty sea food should do it.

It has been the real big issue for me and recovery. I'm two and half years

with the Buhner protocall and know that I'm still infected, although much

milder than I was. Now after removing my amalgam fillings over the last

year, chelation therapy for two years, I feel ready to try the ABX again.

The herbs have really helped me to avoid the worst effects of the ABX, for

instance I had no sunburn with Doxcycline. But I did have major mouth sores

after 2 months of ABX treatment, found out it was heavy metals. But I have

no doubt that most of the infection was cleared out with the ABX. Some say

it takes at least 3 years of combination therapy to really improve. So now

I'm starting ABX again while still on the herbs- all 5 herbs. I will still

be taking chelators as well.

As far as heavy metal testing you can do hair or the urine chelated test.

Hair is real easy but hard to interpret. Chelated urine test is a little

risky if you have kidney issues, but otherwise can show immediate relief of

neurological symptoms, which is what I mostly had. I also had a " negative

test " , which I'll bet is the same for most neurological Lyme.

Rick

_____

From:

[mailto: ] On Behalf Of y093666

Sent: Wednesday, November 11, 2009 10:40 PM

Subject: [ ] Re: what next after Buhner protocol?

Given many say you need to be on abx for years to improve.. I do wonder if

the same hold true for herbs and I'm not giving it long enough. I do worry

about causing damage about long term abx.. and some improvement, but not

" cure " . I have good periods and bad periods over the past 18 months on the

buhner protocol part of which was combined with LDN. I exercise everyday,

work full time, run house hold and function (for the most part). I do seem

to have bad periods and bad days. Given I have lost some eyesight 3 years

ago .. I do worry about geting worse/ and again wondering if I need to bit

the bullet and do abx. I do want to keep functioning though and worry about

all of the horrid herx stories of abx and people who get ReALLy sick. If it

does work, than it would be worth the pain. Dr. Jernigan's theory of herxing

not being great for the body and the toxins of lyme causing more damage than

lyme itself makes sense to me. I know some who have been on abx for years

and saw improvement but are still homebound/note as well as I am. So this

all makes me wonder. My Dr./PCP (who is an alterative guy) says he does see

patients get better on abx and if it were him and he thought he had lyme ,

he'd be on abx!

Edith- you mention being on off/abx for 10 years.. did it solve your neuro

symptoms.. what was your experience with abx and now buhner?

Thank you!

[Guest guest]

Thank you Rick. I did have all of my silver fillings removed last year and

compatability testing done on the filling replacement materials. I did not do

any metals testing or chelation yet though. That's been on my list. I actually

was doing pretty well even through the dental work (took it slow 6 months to

complete)after 1 year on sarsparilla/devils claw 18 months, candida diet, LDN,

and amygdal retraining (ashok gupta meditation/retraining exercises). I stopped

LDN since I didn't think it was adding greatly and continued to do well for

about a year adding cat's claw in for a year until this fall. My flare up is

not as bad as before.. but is still linger now for several months. Decided to

stop all herbs until my kidneys are tested/physical since having alot of lower

back pain.

What did you use for chelators...? So you do believe abx did help you? I worry

about it making me worse or new symptoms emerging. My western blot according to

igenex is positive for lyme/long term exposure.

So are you saying the chelation took care of your neuro symptoms? What neur

symptoms did you have?

>

> One thing you may want to consider is heavy metal testing. Everyone that

> grew up with " silver fillings " which are 50% mercury by weight, or that has

> been eating plenty sea food should do it.

>

>

>

> It has been the real big issue for me and recovery. I'm two and half years

> with the Buhner protocall and know that I'm still infected, although much

> milder than I was. Now after removing my amalgam fillings over the last

> year, chelation therapy for two years, I feel ready to try the ABX again.

> The herbs have really helped me to avoid the worst effects of the ABX, for

> instance I had no sunburn with Doxcycline. But I did have major mouth sores

> after 2 months of ABX treatment, found out it was heavy metals. But I have

> no doubt that most of the infection was cleared out with the ABX. Some say

> it takes at least 3 years of combination therapy to really improve. So now

> I'm starting ABX again while still on the herbs- all 5 herbs. I will still

> be taking chelators as well.

>

>

>

> As far as heavy metal testing you can do hair or the urine chelated test.

> Hair is real easy but hard to interpret. Chelated urine test is a little

> risky if you have kidney issues, but otherwise can show immediate relief of

> neurological symptoms, which is what I mostly had. I also had a " negative

> test " , which I'll bet is the same for most neurological Lyme.

>

> Rick

>

>

>

> _____

>

> From:

> [mailto: ] On Behalf Of y093666

> Sent: Wednesday, November 11, 2009 10:40 PM

>

> Subject: [ ] Re: what next after Buhner protocol?

>

>

>

>

>

> Given many say you need to be on abx for years to improve.. I do wonder if

> the same hold true for herbs and I'm not giving it long enough. I do worry

> about causing damage about long term abx.. and some improvement, but not

> " cure " . I have good periods and bad periods over the past 18 months on the

> buhner protocol part of which was combined with LDN. I exercise everyday,

> work full time, run house hold and function (for the most part). I do seem

> to have bad periods and bad days. Given I have lost some eyesight 3 years

> ago .. I do worry about geting worse/ and again wondering if I need to bit

> the bullet and do abx. I do want to keep functioning though and worry about

> all of the horrid herx stories of abx and people who get ReALLy sick. If it

> does work, than it would be worth the pain. Dr. Jernigan's theory of herxing

> not being great for the body and the toxins of lyme causing more damage than

> lyme itself makes sense to me. I know some who have been on abx for years

> and saw improvement but are still homebound/note as well as I am. So this

> all makes me wonder. My Dr./PCP (who is an alterative guy) says he does see

> patients get better on abx and if it were him and he thought he had lyme ,

> he'd be on abx!

>

> Edith- you mention being on off/abx for 10 years.. did it solve your neuro

> symptoms.. what was your experience with abx and now buhner?

>

> Thank you!

>

[Guest guest]

For the last 2 1/2 years I've been on various abx, samento & burbur,

herbs & supps as per the Buhner protocol & also Vemma which is an

excellent vitamin & mangosteen juice product. After so many abx, my

immune system started crashing and my stomach is really bad with gluten

and carb intolerance. And if I would try and reduce the samento,

Japanese knotwood or the abx I would relapse so I've decided to get more

aggressive with my treatment. I started MMS and bioresonance at the same

time and am now slowly lowering samento and knotwood. I did stop all abx

and am actually doing ok. Energy is not the greatest but some infections

I had in my lungs are gone.

I was maintaining a good quality of life with tons of supps, herbs

and meds but not destroying these bugs. After having Lyme for 21 years,

I can feel that I have a large zoo in my body and just needed to be more

aggressive. I also have heavy brain problems and am hoping it will get

better. Another thing I started, in addition to the Vemma, is making a

tea with the rind of the mangosteen. Am lowering everything very slowly

and adding the MMS slowly too. I find I have the same herxes as the abx

but hopefully without tearing my gut & immune system apart.

I know MMS has a bad reputation from many of you but, for me, I can

feel this is an excellent alternative to the abx and seems to work well

with the bioresonance. , Lyme since 88

[Guest guest]

Forgot to add. Really important to check out for Candida yeast too.

That's a serious problems for many of us on abx or not!

[Guest guest]

Hi -

I haven't tried abx yet. I'm meeting with GP in January to explore lyme

treatment ( abx). He is not a llmd, but is treating lyme patients (he did tell

me he only does orals, no IV for risk of losing his license, ).

Where do you find/ order the Saccharomycides Boulardii from? I'm on the theralac

as part of a yeast treatment. Right now I'm on the first drugs, really almost

ever. SCary given I've been so organic for all of these years. I decided to do

Dr. McCandless's yeast protocol since I do test positive for yeast according to

Great Plains Lab OAT (Organic Acid Test). Yes- that's even before abx lyme

treatment! I don't have any of the standard yeast problems (yeast infections,

but since lyme symptoms overlap with candida I thought I needed to explore that

option. Also the skin fungus problem I have also points to possible systemic

yeat. I just started on a combination of Diflucan and Flagly per Dr.

McCandless's instructions (and yeast diet for 3 weeks). I've tried other herbal

yeast treatments and also intense yeast diet/nystatin (but did lower my yesat

values). I did find at least once source on internet that optic neuritis could

be caused by fungus---but not alot of info out there on that.

Yes, optic neuritis can be caused by Lyme. Unfortunately my with optic

neuritis left me with some loss of vision in my eye (optic nerve atrophy). Other

classic optic neuritis cause is MS. Thankgod I test negative for that (confirmed

by brain and spinal cord MRI). Other scary statistic is that optic neuritis can

precede MS with 10-15 years (50%).Optic neuritis can also be caused by syphillis

(thus the spirochete /lyme connection). I've not tried Buhner's recommendation

of stephania for eye issues.. I probably should buy some and tincuture it/add it

to my regiment.

>

> Hi,

>

> It sounds like you've been on herbal protocols for a long time but I didn't

see any mention in your post that you have already tried antibiotics. From

everything I've read it seems that most Lyme experts, including Buhner,

recommend use of abx along with herbs if they can be tolerated by the patient.

There are so many different abx combos you could try that even if you experience

problems with some abx, there are others that might work. The yeast issues are a

concern with abx of course which raises another point. I assume you're taking

probiotics? I've tried many over the last couple years and based on LLMD

recommendation and experience I've found a combination of Theralac and

Saccharomycides Boulardii really helps with systemic yeast. In addition to the

Buhner protocol I am currently doing bicillin shots twice a week. I have had no

systemic yeast issues over the last 6 months on this abx (maybe because it isn't

oral) and I did while on other abx - although that was before I started taking

really good probiotics. When I did have yeast I chose not to go on prescription

antifungals because I was already taking so many other things that can stress

the liver. I did get some relief from peu d'arco tea and lots of detoxing.

Also I believe that taking 175 mg a day of Milk Thistle kept my liver in good

shape despite the abx.

>

> What does your MD say about the optic neuritis? Is it a Lyme symptom? I

assume it is because I developed it myself a couple months ago when I had a

relapse of Lyme symptoms. My LLMD ordered a CT scan for this and results were

normal so I haven't done anything to address this symptom other than trying to

reduce inflammation with detoxing and most recently I started taking quercetin.

Also, I don't know if it helps the optic stuff but I take lots of antioxidants.

I added a few additional ones after reading Buhners desciption of QUIN effects

on the brain in Healing Lyme. It just seemed to explain so much of what I had

experienced and I thought the optic nerve swelling may even be caused by that.

>

> -

>

>

[Guest guest]

Hi Robyn- are you saying your on that abx continuously? how long?

>

> Hi - since you said you had an FMS dx many years ago, what's working for my FM

is clindamycin abx. I did 150mg every 6 hours around the clock in the beginning,

then when I herxed after a month, I dropped back to 150mg 2x/day. It took down

the FM 100% in a week! It still works. But keep in mind we're all different when

it comes to our response to meds.

>

> Also, for eye pain and all eye symptoms, I have been able to treat

successfully with mangosteen juice, an anti-inflammatory antioxidant juice.

There are lots of brands - I drink the Ultra mangosteen one with 70 minerals

added. If you try it, go slowly, as it can be powerful, and drink a lot of

water. All eye symptoms cleared up in 24 hours! - Robin

>

> [ ] what next after Buhner protocol?

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Hi All- I wanted to get your feedback. I've done both zhang protocol (8

months) with no improvement. I've been on sarsparilla and devils claw for past

18 months and cats claw for 1 year-- and still having major neuro issues. I've

also had all my silver fillngs removed in 2008. Done multiple candida diets

(very strict no grains or fruits for 8 weeks and then added brown rice some

things after that..)combined with nystatin ( I tested positive for yeast

according to great plains labs organic acid test). Was also on LDN for 1 year .

I did feel I was getting better this summer with eye pain going away after being

on sarsparilla/devils claw--but major setback this fall with increase in old

neuro symptoms including eye pain. Heavy brain fog-muscle twitching , jerking,

jumpy nervous system etc. I decided to go off the combo of cats claw ,

sarsparilla, devils claw since I had lower back pain for past 2 months and going

the bathroom 4X/night (worried about info of sarsparilla causing issues with

kidneys). I " m disappointed that after a year on cats claw and 18 months on

sarsprilla I'm still having these issues. I could not take reservatrol (caused

my twitching to get much worse). I wonder if I did not ramp to full dose ( I did

on cat's claw for at least 2 months). Since I've had these symptoms for 10+

years and neuro symptoms have gotten bad in past years including optic nerve

atrophy/optic neuritis in right eye, wondering if I should take the plunge and

try abx? Wanted to hear thoughts on that...........my history was a FMS

diagnosis 12 years ago-bad neuro symptoms past 3 years which led me down lyme

path. (positive lyme according to IGENEX). Other option would Dr. Jernigan's

holistic approach. I worry about long term bad effects of abx on my system. Ive

always been a sensitive person. And now I have yeast issues whose symptoms

overlap with lyme..... also theory of our immune system health is based on in

our gut and don't want to totally destroy that. Thoughts anyone? So so so tired

of this!

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[Guest guest]

Oh yeah the Stephania, I've been meaning to look into that - just when I thought

I couldn't possibly take another supplement! The Saccharomycides Boulardii is

available online from www.organicpharmacy.org and also I found some with the

refrigerated supplements at Whole Foods. It does need to be refrigerated so

Organic Pharmacy only ships it express Mon-Tues-Wed. I hadn't heard of this

probiotic until recently when my LLMD recommended it. It is some type of

beneficial yeast so it does not get killed off by the abx, in fact you can take

the pills at the same time. My daughter just had to start Zithromax and Mepron

for Babesia so our LLMD has her taking two of the SB and one Theralac daily.

Apparently the SB helps prevent c-diff infections, a real concern with

Zithromax.

Yeast can be so difficult to control, I can totally understand your concern

about adding abx to the mix. At one point I did take a supplement for yeast that

worked really well called Yeast Cleanse by Solray. It quickly cleaned up the

systemic yeast I had after months of treatment but I stopped it when I learned

that one of the ingredients, tea tree oil, is not recommended for internal use.

The other two main ingredients, as I remember, are caprylic acid and peau

d'arco, both of which are highly recommended yeast treatments. I never took

nystatin or diflucan, although I know many who swear by it. I wonder if the

antifungals will kill off the s. boulardii....

[ ] Re: what next after Buhner protocol?

Hi -

I haven't tried abx yet. I'm meeting with GP in January to explore lyme

treatment ( abx). He is not a llmd, but is treating lyme patients (he did tell

me he only does orals, no IV for risk of losing his license, ).

Where do you find/ order the Saccharomycides Boulardii from? I'm on the

theralac as part of a yeast treatment. Right now I'm on the first drugs, really

almost ever. SCary given I've been so organic for all of these years. I decided

to do Dr. McCandless's yeast protocol since I do test positive for yeast

according to Great Plains Lab OAT (Organic Acid Test). Yes- that's even before

abx lyme treatment! I don't have any of the standard yeast problems (yeast

infections, but since lyme symptoms overlap with candida I thought I needed to

explore that option. Also the skin fungus problem I have also points to possible

systemic yeat. I just started on a combination of Diflucan and Flagly per Dr.

McCandless's instructions (and yeast diet for 3 weeks). I've tried other herbal

yeast treatments and also intense yeast diet/nystatin (but did lower my yesat

values). I did find at least once source on internet that optic neuritis could

be caused by fungus---but not alot of info out there on that.

Yes, optic neuritis can be caused by Lyme. Unfortunately my with optic

neuritis left me with some loss of vision in my eye (optic nerve atrophy). Other

classic optic neuritis cause is MS. Thankgod I test negative for that (confirmed

by brain and spinal cord MRI). Other scary statistic is that optic neuritis can

precede MS with 10-15 years (50%).Optic neuritis can also be caused by syphillis

(thus the spirochete /lyme connection). I've not tried Buhner's recommendation

of stephania for eye issues.. I probably should buy some and tincuture it/add it

to my regiment.

>

> Hi,

>

> It sounds like you've been on herbal protocols for a long time but I didn't

see any mention in your post that you have already tried antibiotics. From

everything I've read it seems that most Lyme experts, including Buhner,

recommend use of abx along with herbs if they can be tolerated by the patient.

There are so many different abx combos you could try that even if you experience

problems with some abx, there are others that might work. The yeast issues are a

concern with abx of course which raises another point. I assume you're taking

probiotics? I've tried many over the last couple years and based on LLMD

recommendation and experience I've found a combination of Theralac and

Saccharomycides Boulardii really helps with systemic yeast. In addition to the

Buhner protocol I am currently doing bicillin shots twice a week. I have had no

systemic yeast issues over the last 6 months on this abx (maybe because it isn't

oral) and I did while on other abx - although that was before I started taking

really good probiotics. When I did have yeast I chose not to go on prescription

antifungals because I was already taking so many other things that can stress

the liver. I did get some relief from peu d'arco tea and lots of detoxing. Also

I believe that taking 175 mg a day of Milk Thistle kept my liver in good shape

despite the abx.

>

> What does your MD say about the optic neuritis? Is it a Lyme symptom? I

assume it is because I developed it myself a couple months ago when I had a

relapse of Lyme symptoms. My LLMD ordered a CT scan for this and results were

normal so I haven't done anything to address this symptom other than trying to

reduce inflammation with detoxing and most recently I started taking quercetin.

Also, I don't know if it helps the optic stuff but I take lots of antioxidants.

I added a few additional ones after reading Buhners desciption of QUIN effects

on the brain in Healing Lyme. It just seemed to explain so much of what I had

experienced and I thought the optic nerve swelling may even be caused by that.

>

> -

>

>

[Guest guest]

I started Zithromax & Mepron 2 weeks ago after 3 months on oral Amoxicillin.

What is c-diff infection? I've been taking Ultimate Flora Critical Care 50

Billion (refrigerated) at bedtime. So far no problems. How much does

Sacchaomycides Boulardii cost? Is Theralac easy to find at Whole Foods etc?

Kim

Re: [ ] Re: what next after Buhner protocol?

It is some type of beneficial yeast so it does not get killed off by the abx, in

fact you can take the pills at the same time. My daughter just had to start

Zithromax and Mepron for Babesia so our LLMD has her taking two of the SB and

one Theralac daily. Apparently the SB helps prevent c-diff infections, a real

concern with Zithromax.

Yeast can be so difficult to control, I can totally understand your concern

about adding abx to the mix. At one point I did take a supplement for yeast that

worked really well called Yeast Cleanse by Solray. It quickly cleaned up the

systemic yeast I had after months of treatment but I stopped it when I learned

that one of the ingredients, tea tree oil, is not recommended for internal use.

The other two main ingredients, as I remember, are caprylic acid and peau

d'arco, both of which are highly recommended yeast treatments. I never took

nystatin or diflucan, although I know many who swear by it. I wonder if the

antifungals will kill off the s. boulardii....

[Guest guest]

Kim,

C diff. is short for clostridium difficile, an infection that can occur when

broad spectrum antibiotics, like Zithromax, wipe out all the good bacteria in

the GI tract and allow the c diff organism to grow out of control. C diff

causes bad diarrhea, is hard to treat and once you get it you need to avoid

future antibiotic use.

The saccharomyces boulardii cost $12.79 per bottle of 50 capsules from Organic

Pharmacy. The SB I got at Whole Foods is by Jarrow Formulas and is sold in a

bottle of 90 capsules. See http://www.jarrow.com/product-265 for more info.

Not sure how much I paid at Whole Foods but I just checked and iherb and other

online sites have it for about $12 - $13.

The Theralac is expensive. I ordered it directly from http://www.theralac.com/

and one bottle of 30 capsules costs $44.95! It's also available in cases of 6

bottles for $210 or 12 for $360. Initially I avoided this product because of

the cost and that there are so many other probiotics on the market. My LLMD

says its the best and I really like the product - well except for the price!

-

[Guest guest]

You can order Theralac on the internet. Not sure who has best prices. I ordered

mine through swanson vitamins. Not sure where you get the saccaomycides -I know

my GP uses that alot and mentioned it to me.

>

> I started Zithromax & Mepron 2 weeks ago after 3 months on oral Amoxicillin.

What is c-diff infection? I've been taking Ultimate Flora Critical Care 50

Billion (refrigerated) at bedtime. So far no problems. How much does

Sacchaomycides Boulardii cost? Is Theralac easy to find at Whole Foods etc?

>

> Kim

>

>

>

>

>

> Re: [ ] Re: what next after Buhner protocol?

>

> It is some type of beneficial yeast so it does not get killed off by the abx,

in fact you can take the pills at the same time. My daughter just had to start

Zithromax and Mepron for Babesia so our LLMD has her taking two of the SB and

one Theralac daily. Apparently the SB helps prevent c-diff infections, a real

concern with Zithromax.

>

>

>

>

>

>

>

>

> Yeast can be so difficult to control, I can totally understand your concern

about adding abx to the mix. At one point I did take a supplement for yeast that

worked really well called Yeast Cleanse by Solray. It quickly cleaned up the

systemic yeast I had after months of treatment but I stopped it when I learned

that one of the ingredients, tea tree oil, is not recommended for internal use.

The other two main ingredients, as I remember, are caprylic acid and peau

d'arco, both of which are highly recommended yeast treatments. I never took

nystatin or diflucan, although I know many who swear by it. I wonder if the

antifungals will kill off the s. boulardii....

>

[Guest guest]

,

How much Theralac do you take? At the website it states you only have to take

it twice a week.

Thanks,

Kim

Re: [ ] what next after Buhner protocol?

Kim,

C diff. is short for clostridium difficile, an infection that can occur when

broad spectrum antibiotics, like Zithromax, wipe out all the good bacteria in

the GI tract and allow the c diff organism to grow out of control. C diff

causes bad diarrhea, is hard to treat and once you get it you need to avoid

future antibiotic use.

The saccharomyces boulardii cost $12.79 per bottle of 50 capsules from Organic

Pharmacy. The SB I got at Whole Foods is by Jarrow Formulas and is sold in a

bottle of 90 capsules. See http://www.jarrow.com/product-265 for more info.

Not sure how much I paid at Whole Foods but I just checked and iherb and other

online sites have it for about $12 - $13.

The Theralac is expensive. I ordered it directly from http://www.theralac.com/

and one bottle of 30 capsules costs $44.95! It's also available in cases of 6

bottles for $210 or 12 for $360. Initially I avoided this product because of

the cost and that there are so many other probiotics on the market. My LLMD

says its the best and I really like the product - well except for the price!

-

[Guest guest]

Kim, I take it every day and my daughter does too because we are both on abx

treatments at the moment. I think the recommended dosage is just for general

use. My LLMD does recommend 1x day.

-

Re: [ ] what next after Buhner protocol?

Kim,

C diff. is short for clostridium difficile, an infection that can occur when

broad spectrum antibiotics, like Zithromax, wipe out all the good bacteria in

the GI tract and allow the c diff organism to grow out of control. C diff causes

bad diarrhea, is hard to treat and once you get it you need to avoid future

antibiotic use.

The saccharomyces boulardii cost $12.79 per bottle of 50 capsules from Organic

Pharmacy. The SB I got at Whole Foods is by Jarrow Formulas and is sold in a

bottle of 90 capsules. See http://www.jarrow.com/product-265 for more info. Not

sure how much I paid at Whole Foods but I just checked and iherb and other

online sites have it for about $12 - $13.

The Theralac is expensive. I ordered it directly from http://www.theralac.com/

and one bottle of 30 capsules costs $44.95! It's also available in cases of 6

bottles for $210 or 12 for $360. Initially I avoided this product because of the

cost and that there are so many other probiotics on the market. My LLMD says its

the best and I really like the product - well except for the price!

-

[Guest guest]

This message is for Kim re: C diff, I had C diff and ended up in the

hospital and bed ridden for 6 mos and weighed 90 lbs, it's a serious

infections, feel free to contact me if you need some support/suggestions

on what worked for me.

From:

" on " <maryha@...>

To:

< >

Date:

11/17/2009 03:14 PM

Subject:

Re: [ ] what next after Buhner protocol?

Sent by:

Kim,

C diff. is short for clostridium difficile, an infection that can occur

when broad spectrum antibiotics, like Zithromax, wipe out all the good

bacteria in the GI tract and allow the c diff organism to grow out of

control. C diff causes bad diarrhea, is hard to treat and once you get it

you need to avoid future antibiotic use.

The saccharomyces boulardii cost $12.79 per bottle of 50 capsules from

Organic Pharmacy. The SB I got at Whole Foods is by Jarrow Formulas and is

sold in a bottle of 90 capsules. See http://www.jarrow.com/product-265 for

more info. Not sure how much I paid at Whole Foods but I just checked and

iherb and other online sites have it for about $12 - $13.

The Theralac is expensive. I ordered it directly from

http://www.theralac.com/ and one bottle of 30 capsules costs $44.95! It's

also available in cases of 6 bottles for $210 or 12 for $360. Initially I

avoided this product because of the cost and that there are so many other

probiotics on the market. My LLMD says its the best and I really like the

product - well except for the price!

-

[Guest guest]

Hi - you mention your daughter was on lyme treatment and I wondered for what

symptoms?

My 13 year old daughter has had two intense on the couch GI cramping/diarrhea

for 4 days episodes - exactly 4 weeks apart. With this last episode last week

she then started her first period on Friday which led to 3 days of intense

menstrual cramps! Last spring she started to complain of stomach pains and also

this weird neck stretching/jerking thing when she talks. She did complain of

stomach aches in the evening when she was little gir ( 3-5 yrs old), but no

complaints until last spring. Somehow I think puberty is affecting this-but not

sure if it could also be Lyme. I have an app't with a pedatric GI doc in

boston on Wed.

Also- has anyone tried Dr. Jernigan's approach? It does look kind of hocus pocus

and is very expensive!! It is very benign/safe so I thought I'd try it on my

daughter and try the neuro detox formula since my neuro problems are really bad

and affecting my ability to work. (some people on the internet claim it is

helping) I'm in sales so i have to be able to speak and think coherently! it's

getting very challenging! Thanks for any advice .

>

> Kim, I take it every day and my daughter does too because we are both on abx

treatments at the moment. I think the recommended dosage is just for general

use. My LLMD does recommend 1x day.

> -

> Re: [ ] what next after Buhner protocol?

>

> Kim,

>

> C diff. is short for clostridium difficile, an infection that can occur when

broad spectrum antibiotics, like Zithromax, wipe out all the good bacteria in

the GI tract and allow the c diff organism to grow out of control. C diff causes

bad diarrhea, is hard to treat and once you get it you need to avoid future

antibiotic use.

>

> The saccharomyces boulardii cost $12.79 per bottle of 50 capsules from

Organic Pharmacy. The SB I got at Whole Foods is by Jarrow Formulas and is sold

in a bottle of 90 capsules. See http://www.jarrow.com/product-265 for more info.

Not sure how much I paid at Whole Foods but I just checked and iherb and other

online sites have it for about $12 - $13.

>

> The Theralac is expensive. I ordered it directly from

http://www.theralac.com/ and one bottle of 30 capsules costs $44.95! It's also

available in cases of 6 bottles for $210 or 12 for $360. Initially I avoided

this product because of the cost and that there are so many other probiotics on

the market. My LLMD says its the best and I really like the product - well

except for the price!

>

> -

>

>

[Guest guest]

Hi, My 17 year old daughter developed acute Lyme symptoms in September '08 and

has been in treatment for just over a year. She just tested positive for

babesia so now she's taking Mepron and Zithromax. Her symptoms have been pretty

classic Lyme including lots of brain fog and fatigue. I know from her

experience and my own that the Lyme cycle synched up with our menstrual cycles

so we get symptom flares along with our periods. She hasn't had many stomach

symptoms but when my son had Lyme a few years ago, age 10 at the time, his major

complaint was nausea and headaches. I went through a few months, after

infection but before diagnosis, where I had lots of nausea and occasional

vomiting. Lyme can effect the Vagus nerve which controls a lot of GI

function...

-

[ ] Re: what next after Buhner protocol?

Hi - you mention your daughter was on lyme treatment and I wondered for

what symptoms?

My 13 year old daughter has had two intense on the couch GI cramping/diarrhea

for 4 days episodes - exactly 4 weeks apart.