Re: Positive Lyme Test Kristy & Sandy

[Guest guest]

Tami,

I'm a carrier of Strep B but I can't tell you if the B

burgdorferi is related to that.

B/c you mentioned bands the only bands I know of for any test

would be the Western Blot which is used to confirm or rule out a

diagnosis of Lyme Disease.

And I've yet to have my rheumatologist test with this test and

send it off to the lab closest to me: Medical Diagnostics Lab

and yes they can also diagnose Lyme like IGenex.

Sorry that I can't be of more help to you hun. Let me know what

they say about this B burgdorferi as to what it is and then I

can better tell you more if it relates to me.

Pls be careful not to overdo while you are recovering during the

next 6 to 12 weeks.

Kristy

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[Guest guest]

Hi Tammy:

You should definately see a LLMD (Lyme Literate MD) as most doctors do

not know how to treat Lyme. If you catch it right away (within a week

or so) from being infected a month or two of antibiotics will

probably " cure " you. BUT if you've had it any longer you will need

long term antibiotic treatment. I've been on antibiotics since late

February for my Lyme and I don't have a super bad case (and luckily no

co-infections).

There are some great websites out there - I will send you a private

message with some good info from some of the top Lyme Docs in the

country.

Hugs

Molly

[Guest guest]

Sandi,

Tami has a false positive (which can happen). She's going to

need to try and have the test run again but this time by Medical

Diagnostic Labs (yes, this is the other lab that tests for

Lyme).

Also, I learned from someone recently that if you have had the

illness for a while (even before getting a diagnosis) that the

antibiotics won't cure the disease. It confirmed what I had

said before that Lyme is not cured by antibiotics. If the

diagnosis is caught early and the antibiotics are started then

the chances of it not becoming severe is much more likely.

But glad that other than what you are concerned about with the

meds to try and help the Lyme glad that you are doing a little

bit better with the other ones.

As I said before, I care about you and am willing to challenge

certain things that you hear b/c I care.

Kristy

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[Guest guest]

Hi Kristy, I know you care. But you are stating just one side of current medical opinion. There are doctors out there who treat chronic Lyme and are getting excellent results. I don't know how much of it you would call cure vs. treatment, but people are getting better. I am seeing a doctor with experience in treating Lyme. He is not however devoted to treating chronic Lyme like Molly's doctor. I haven't even begun treating the Lyme yet and am not looking forward to it. In fact, I am not even sure I will go through with it. All I care about is managing/treating the pelvic floor pain. I am still in 24/7 pain but it is at a lower level. So far we have been treating the yeast that goes along with chronic Lyme as well as the hormone deficiencies. I will see my doc tomorrow. I need to work on the blood coagulation problem first I think. What you and I constantly debate are the 2 sides to the medical equation. I am always saying that there is hope for a cure for whatever the mystery ailment is, Lyme, vuvodynia. You are not b/c you want to protect me. I have evidence to support my claim. You have evidence to support yours. Some doctors say there is no cure for vulvar pain. While many women are 100% painfree through PT, surgery, low ox diet, estrogen cream etc. Just look at Dee. I have personally spoken with doctors who have cured many people of Chronic Lyme. You just haven't spoken to those doctors. You see there was once a time when the educated elite believed the world was flat. There were others at the same time who thought to disprove them. I prefer to side with the doctors who think outside the box b/c that is where the cutting edge treatment begins. Those people

who say there is no cure will never discover one because they aren't looking. AS far as I know you haven't done any alternative therapies. Those outside the box. You have stuck to traditional medicine as far as what I have read - perhaps I missed some things though. My doc combines both and I think that gives me the best chance for a cure. Many of those alternative docs have cured women's vulvar pain. I have seen over 100 doctors including alternative, PTs, naturopaths and they all have cured patient's vulvar pain. I agree there is no one single cure. But many, many women are cured... they just don't stick around like Dee. There is so much hope, but you have to believe AND go outside the box! Please stop trying to protect me by telling me there is no cure for things. My doctors say there is and I choose to believe them. This hope is what

is keeping me alive. ALl I have to waste is my own money and time and I can't think of a better investment I could make then in my health b/c once I am well I can then be the best mom to my kids and wife to my husband. ( The Lyme treatment though with antibiotics could worsen my yeast problem so I may not even pursue that course of treatment if the vulvar pain continues to get better). I just pray it continues. Sandi

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[Guest guest]

Sandi,

Actual Lyme experts are very few and hard to find and many of

them are getting their licenses taken away b/c of various

claims.

I know quite a bit about the subject thanks to some of my

friends who have it.

People with Lyme may be going in to remission for a time but as

far as getting rid of the disease permanently that is not

happening at this time. I wish that were the case.

What you and I debate about is not the two sides to the medical

equation hun. It's about the definition of the word " cure " b/c

there are two meanings for it. But since you mentioned the two

sides of the medical equation, the people who think that there

are two sides to the issue such as Lyme are taking advantage of

desperate people and b/c I know you are desperate that's why I'm

concerned as I would with any of my friends that are desperate

to find an answer to their problem regardless of whether it's

vulvodynia or something else. If there were really two sides to

the equation why (the various practicioners who make statements

like this) won't they put their testing thru the proper routes

to insure the safety of it as well as the legality of it?

Also, I know you have had issues with yeast so the months of

antibiotic therapy would cause a whole other problem.

There's always a hope for a chance at trying to get relief so

that one can function and if you are talking about cure from

that standpoint then you and I agree. But my concern is the

word " cure " used by those that are taking advantage of the

desperate.

I want you to have hope hun but I don't want you to get yourself

in to a situation where what you try may actually do more harm

than good and that is what happens with those that are taking

advantage of those who are desperate. That's what I'm

protecting you from as are the others who care about you, not

from having hope of trying to find relief so you can function.

Dee hasn't said (that I'm aware of) that she has been " cured "

(as in to permanently go away) of her vulvodynia (Dee, sorry you

are being brought in to this discusison like this) but she is

getting relief which is good. Cure as in to relieve is

different from " cure " as in that it permanently goes away. If

it were to permanently go away you wouldn't need meds, PT, etc.

Most drs say that there is no " cure " (as in to permanently go

away) for vulvar pain but just b/c that's the case doesn't mean

one shouldn't continue to try to find the cause for the problem

but it must be done in a safe and legal manner.

Sometimes thinking outside the box can be a good thing you are

correct but not at the risk of taking advantage of those who are

desperate. Also, I have done some alternative treatments.

My nerve blocks right now are being applied with a medicine

called Sarapin which comes from a pitcher plant. But I do look

in to alternative treatments to see if they are options for me.

Many of them are not not only b/c they are not safe or legal

(and yes some alternative treatments are legal and safe) but b/c

of my complex health can't do them. So there's your answer as

to whether or not I've tried or considered alternative

treatments. I have found that acidophillous helps me to keep

the yeast at bay (which I need to get more of).

If my drs feel that any other alternative treatments I want to

take are safe for me (and yes they are willing to let me try

some if it's safe for my complex health situation) then I will

try and do it.

As for the low oxalate diet helping women that is starting to

change, that it's not as helpful as was once thought.

There is always a chance for hope that is true but for some such

as myself it means being able to manage the pain and such so

that we can function, not an actual cure. But as I said

thinking outside the box can be a good thing (yep, I agree with

you on that) but not at the risk of taking advantage of those

who are desperate.

My drs ( as I said before, if they think it's safe for me) are

willing to combine both alternative and conventional for me.

And in fact my Pain Management dr does some of that for me for

controlling my pain but they are safe methods.

Also, the FFC says on their website in their disclaimer about

the issue of curing and also consulting with a dr in one's area

before doing their treatment b/c they know if they don't they'll

get in to trouble with the law.

But I do hope that you continue to do better regardless. We all

do but don't stop us from caring or trying to protect you from

being hurt in other ways b/c of how desperately you want to feel

better. Pls don't tell us not to voice our concerns about

something that you are doing.

We want you to find a way to function so that you can be the

best mom and wife but we don't want you to get hurt again like

you already have several times when it came to some of the

things you have tried. If we didn't care we wouldn't be saying

anything

Take care Sandi and keep doing well.

Kristy

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[Guest guest]

Yep, I agree, Kristy - there is a doctor or two out there that claim

they can " cure " Chronic Lyme but most LLMD's say there is no " cure "

right now. They get it to the point where your immune system can take

over. They boost the immune system while treating the Lyme (mostly

with antibiotics but there are a lot of alternate methods out there

now). Most good LLMD's keep track of their patients for a few years

after treatment.

I take about 20 pills a day - some are vitamins/minerals, some

supplements that act as immune boosters and/or detox.

[Guest guest]

Yep, I agree, Kristy - there is a doctor or two out there that claim

they can " cure " Chronic Lyme but most LLMD's say there is no " cure "

right now. They get it to the point where your immune system can take

over. They boost the immune system while treating the Lyme (mostly

with antibiotics but there are a lot of alternate methods out there

now). Most good LLMD's keep track of their patients for a few years

after treatment.

I take about 20 pills a day - some are vitamins/minerals, some

supplements that act as immune boosters and/or detox.

[Guest guest]

Hi Sandi:

You're right there are MANY treatments for Lyme and that is

comforting to me. My Dr. mentioned a once a week antibiotic for a

few years to prevent a relapse - sounds good to me.

He says I may be able to taper off the antibiotics in November,

which surprised me - I thought I'd be on them longer. This is my

herx week and I'm not doing too badly (just a little headache and

stomach ache and fatigue.) Each one gets easier.

My " V " pain is at about a three - but I still have to be very

careful about how I dress, which is a pain. I am hoping as I get

better with my Lyme this will improve, but it's been the same for

many months now. At least it's much better than last year when I

couldn't even sit down.

My Dr. prescribed Diflucan and Nystatin (every other day) for the

yeast - it's not too bad yet. I take Liv52 to protect my Liver. I

also take Threelac three times per day and a probiotic three times

per day, which is helpful, too. I avoid white flour, white rice and

sugar. I don't avoid fruit, though. The diet is the toughest part.

I hope things get better for you! Wishing you many pain free days

ahead.

Hugs:

Molly