Re: Self Treatment?

January 8, 2011

Make it simpler on yourself...........The pressure you are self-inflicting is

detrimental to your recovery.

Jazzman

[ ] Self Treatment?

Hi everyone,

I took abx for two-and-a-half years and then decided that I had had enough

and wanted to try the herbal approach. I'm working with an LLMD who says he

had Lyme and healed himself. He also has patients he says have gotten well

on the protocol he prescribes according to blood and urine tests. I like him

a lot, but find that taking his protocol is very challenging. It's cost me

hundreds of dollars to buy the herbs and supplements!

I feel good enough to take a stab at working, even though I haven't fully

done every aspect of the protocol. That's a good sign-or is it only

temporary? I just don't know.

Anyway, I was hoping to get some comments from all of you about

self-treatment using Buhner's book recommendations vs. working with an LLMD

who uses some of Buhner's protocol.

Also, here is the challenge I've been having with taking the supplements and

herbs fully. When I wake up I have one thing to take on an empty stomach,

and then I have to wait 45 minutes. Then I take something else on an empty

stomach and have to wait another half hour. Then I have more things to take

on an empty stomach and wait another 15 minutes. After breakfast, I have a

handful of supplements. After lunch, I have another handful of supplements.

In the afternoon, I'm supposed to take more things on an empty stomach, then

something else a half hour before dinner. Then stuff after dinner, etc. I'm

not that regimented of a person, so I often miss the afternoon empty stomach

doses (which means I'm missing the second doses of some critical things)-the

time flies by before I even notice. Someone commented to me that people with

" Lyme brain " have a hard time sticking to rigid schedules like this. I think

it's just me. So please give feedback or tips to being more regular.

Thanks everyone for reading through all this!

Janet

January 9, 2011

>

> Anyway, I was hoping to get some comments from all of you about

> self-treatment using Buhner's book recommendations vs. working with an LLMD

> who uses some of Buhner's protocol.

I'm self-treating, as there are no MD's in my country who offer Buhner treatment

or similar protocols. There are some alternative practitioners who use similar

protocols, but they are expensive and I doubt they offer much additional value

compared to DIY.

> Someone commented to me that people with

> " Lyme brain " have a hard time sticking to rigid schedules like this.

I don't think it is just people with a Lyme brain who have problems with such

complicated schedules. I'm not good at this myself and I don't think you can

ever do it completely 'right' if you use many herbs and supplements (even more

so if you also take ABX and probiotics). IMHO a strict schedule is no very

important for herbs and supplements, it helps to optimise things but there are

so many other factors involved that you cannot influence...

However, people who have severe neuroborreliosis should have a family member

help them with dosage and schedules, otherwise things might go wrong.

January 9, 2011

Hi Janet,

No doubt it is difficult-

I second Knot-weed's suggestion if you can get a family member or friend to help

you.

Sometimes that is not so easy to find.

I just want to say from my own experience - I followed Buhner's on my own, but

when I reached taking 4 pills three times a day, I decided that was enough, even

tho Buhner's protocol is 4 pills 4 times a day.

When I found that resveratrol made me nauseous I dropped it, and switched to

Smilax, another one of Buhner's herbs.

What I'm saying is that altho we're all different and I don't know your

situation, the protocol worked for me, with these adjustments.

So perhaps if you miss something once in a while, it is not the end of the

world.

When I first started the protocol, even this group didn't exist. All I had was

the book. I didn't have a computer in my house, had to travel to a university to

use one, to look up sources of herbs.

Do you write things down?

When I am taking a lot of pills I try to keep track-

at 11am I took this pill, etc.

I just want to offer you some moral support, I know how hard it is, esp when we

feel like our brains are not working as they should, as we know they usually do.

So please do try to be easy on yourself.

and keep posting here and asking for whatever support we can offer.

best,

ellen

>

> Hi everyone,

>

> I took abx for two-and-a-half years and then decided that I had had enough

> and wanted to try the herbal approach. I'm working with an LLMD who says he

> had Lyme and healed himself. He also has patients he says have gotten well

> on the protocol he prescribes according to blood and urine tests. I like him

> a lot, but find that taking his protocol is very challenging. It's cost me

> hundreds of dollars to buy the herbs and supplements!

>

> I feel good enough to take a stab at working, even though I haven't fully

> done every aspect of the protocol. That's a good sign-or is it only

> temporary? I just don't know.

>

> Anyway, I was hoping to get some comments from all of you about

> self-treatment using Buhner's book recommendations vs. working with an LLMD

> who uses some of Buhner's protocol.

>

> Also, here is the challenge I've been having with taking the supplements and

> herbs fully. When I wake up I have one thing to take on an empty stomach,

> and then I have to wait 45 minutes. Then I take something else on an empty

> stomach and have to wait another half hour. Then I have more things to take

> on an empty stomach and wait another 15 minutes. After breakfast, I have a

> handful of supplements. After lunch, I have another handful of supplements.

> In the afternoon, I'm supposed to take more things on an empty stomach, then

> something else a half hour before dinner. Then stuff after dinner, etc. I'm

> not that regimented of a person, so I often miss the afternoon empty stomach

> doses (which means I'm missing the second doses of some critical things)-the

> time flies by before I even notice. Someone commented to me that people with

> " Lyme brain " have a hard time sticking to rigid schedules like this. I think

> it's just me. So please give feedback or tips to being more regular.

>

> Thanks everyone for reading through all this!

>

> Janet

>

January 9, 2011

Janet,

Yes, it is true that mostly all of us struggle with the schedule of taking the

protocol we are on. I have found that the more organized I can get with the

various items I need to take, the more likely I am to remember them. My regimen

is not as rigorous now that I've been treating for several years but still

challenges me to remember. Try to get your various herbs/supplements as

organized as you can, and then just do your best. None of us remembers it all

all of the time. jo

Someone commented to me that people with

> " Lyme brain " have a hard time sticking to rigid schedules like this. I think

> it's just me. So please give feedback or tips to being more regular.

>

> Thanks everyone for reading through all this!

>

> Janet

>

January 10, 2011

Ellen,

When you write " the protocol worked for me " , are you still following it?

deb

> >

> > Hi everyone,

> >

> > I took abx for two-and-a-half years and then decided that I had had enough

> > and wanted to try the herbal approach. I'm working with an LLMD who says he

> > had Lyme and healed himself. He also has patients he says have gotten well

> > on the protocol he prescribes according to blood and urine tests. I like him

> > a lot, but find that taking his protocol is very challenging. It's cost me

> > hundreds of dollars to buy the herbs and supplements!

> >

> > I feel good enough to take a stab at working, even though I haven't fully

> > done every aspect of the protocol. That's a good sign-or is it only

> > temporary? I just don't know.

> >

> > Anyway, I was hoping to get some comments from all of you about

> > self-treatment using Buhner's book recommendations vs. working with an LLMD

> > who uses some of Buhner's protocol.

> >

> > Also, here is the challenge I've been having with taking the supplements and

> > herbs fully. When I wake up I have one thing to take on an empty stomach,

> > and then I have to wait 45 minutes. Then I take something else on an empty

> > stomach and have to wait another half hour. Then I have more things to take

> > on an empty stomach and wait another 15 minutes. After breakfast, I have a

> > handful of supplements. After lunch, I have another handful of supplements.

> > In the afternoon, I'm supposed to take more things on an empty stomach, then

> > something else a half hour before dinner. Then stuff after dinner, etc. I'm

> > not that regimented of a person, so I often miss the afternoon empty stomach

> > doses (which means I'm missing the second doses of some critical things)-the

> > time flies by before I even notice. Someone commented to me that people with

> > " Lyme brain " have a hard time sticking to rigid schedules like this. I think

> > it's just me. So please give feedback or tips to being more regular.

> >

> > Thanks everyone for reading through all this!

> >

> > Janet

> >

January 12, 2011

Hi Deb,

If you go to the files on the home page of this group, I have posted my story.

Basically, I followed the protocol for 3 months and felt better, so stopped.

That was in 2006.

To date I am fine, altho if I fail to take magnesium citrate the pain in my knee

returns.

I do have insomnia, difficulty concentrating, fatigue.

Some people would attribute these to Lyme, and that may be the case.

OTOH, plenty of people have these symptoms from causes other than Lyme.

I am treating each of these other things separately.

Overall I feel pretty good.

regards,

ellen

> > >

> > > Hi everyone,

> > >

> > > I took abx for two-and-a-half years and then decided that I had had enough

> > > and wanted to try the herbal approach. I'm working with an LLMD who says

he

> > > had Lyme and healed himself. He also has patients he says have gotten well

> > > on the protocol he prescribes according to blood and urine tests. I like

him

> > > a lot, but find that taking his protocol is very challenging. It's cost me

> > > hundreds of dollars to buy the herbs and supplements!

> > >

> > > I feel good enough to take a stab at working, even though I haven't fully

> > > done every aspect of the protocol. That's a good sign-or is it only

> > > temporary? I just don't know.

> > >

> > > Anyway, I was hoping to get some comments from all of you about

> > > self-treatment using Buhner's book recommendations vs. working with an

LLMD

> > > who uses some of Buhner's protocol.

> > >

> > > Also, here is the challenge I've been having with taking the supplements

and

> > > herbs fully. When I wake up I have one thing to take on an empty stomach,

> > > and then I have to wait 45 minutes. Then I take something else on an empty

> > > stomach and have to wait another half hour. Then I have more things to

take

> > > on an empty stomach and wait another 15 minutes. After breakfast, I have a

> > > handful of supplements. After lunch, I have another handful of

supplements.

> > > In the afternoon, I'm supposed to take more things on an empty stomach,

then

> > > something else a half hour before dinner. Then stuff after dinner, etc.

I'm

> > > not that regimented of a person, so I often miss the afternoon empty

stomach

> > > doses (which means I'm missing the second doses of some critical

things)-the

> > > time flies by before I even notice. Someone commented to me that people

with

> > > " Lyme brain " have a hard time sticking to rigid schedules like this. I

think

> > > it's just me. So please give feedback or tips to being more regular.

> > >

> > > Thanks everyone for reading through all this!

> > >

> > > Janet

> > >

January 13, 2011

I'm not sure if this group often addresses the role of heavy metal accumulation

in weakening immune function and playing a role in symptoms following Lyme's. I

developed your symptoms following a major surgery and lasting, related

infections, but went over 10 years before heavy metal issues were suggested and

testing done. Removal of amalgam and a slow & gentle chelation process had

gotten rid of symptoms you describe (I got my brain back) and chemical

sensitivities really improved. After 3 years of steady chelation, I took a

break. Last spring I got Lyme's - a horrific case that local docs didn't

diagnose for 10 weeks - and things like brain symptoms, poor coordination, etc.,

came back. A specialist I'd seen for chelation felt ongoing chelation would be

an essential part of Lyme's treatment, since metals jam up energy and detox

functions in cells, etc. He was correct and it was a relief to find a

half-paralyzed face, numb fingers, brain fog, etc., would not be permanent.

For me, nearly 20 years ago major surgery and major dental work had put my

body/brain 'over the edge', while chronic infections with their toxins were also

left to fester. Arthritis had set in, too, not to mention migraines, fatigue,

muscle pain & hormone dysfunction. It's no surprise for me to see all the

problems Lyme's can present. The infection can be so overwhelming that in

anyone whose cell function is

already somewhat challenged with toxic accumulations, the disease itself becomes

the

last straw that sets everything tumbling. What I'm suggesting is that Lyme's

unmasks deeper issues that have impacted cellular immunity, among other things.

The toughest 'pill' to take was being told I had metal 'poisoning', having to

have years and years of

dental work redone, and struggle for many years with chelation and supplement

doses through the days. We had a lot of testing done & among findings learned

I'd

always had considerable genetic limitations with ability to process & excrete

toxins, be

they chemical, metal, or bacterial.

It takes a lot for a weakened mind and body to make needed lifestyle

changes...it took me about four years. Yet it was working incredibly with

steady progress until my

new hobby, back yard organic gardening, became the very activity leading to

Lyme's.

If there is one thing I have learned that improvement depends upon, it's in

cleaning up

and ending whatever multiple exposures we have to toxins that are in us or in

our

surroundings as quickly as possible. If we suspect something such as a food,

water,

pet exposure, auto exhaust, metal taste, even a smelly shower curtain, dryer

sheets or

aftershave, the instinct is probably correct. The body doesn't have a chance to

start

working better until this happens. I'm not certain many of the helpful things

like herbs and supplements can get where they need to go inside cells unless the

toxin 'plugs' are being eliminated simultaneously. As examples, years back my

blood simply accumulated various hormone treatments, while I strongly suspect

Japanese Knotweed is drawing out things like excess copper. I wish it were

easier - and more compatible with the lifestyle factors we tend to assume are

harmless.

I remain hopeful that chronic infection truly can be 'sent packing',

Joanne