Re: Can someone please give me hope?

[Guest guest]

Hi Beth,

Let me start by saying, I'm so sorry for you and your precious kids.

I believe, there is hope, however, for a few reasons but mainly

because the infections were caught relatively early.

I'm an RN, diagnosed with Lyme, Babesia and Bartonella 2 years ago.

My kids, thankfully have been, thusfar, not overcome by these

illnesses, despite being exposed in utero.

In the research, you'll find there are alot of people who's immune

systems are such that they test positively for lyme and friends but

are without symptoms. This is true, in part, because testing methods

are so inadequate (testing for antibodies doesn't necessarily mean

you have the disease, but is often treated as such). I think testing

for the DNA of the bacteria is more reliable but we're way behind the

morphing/varying strains of bacteria to fully rely on that yet

either.

With respect to the Mepron question...there is another, far more

studied, antimalarial that I would look into: Plaquenil. (I'm

taking it presently for a bartonella-like organism). They need to be

tested for an enzyme before taking it and have periodic eye exams,

but after taking Mepron myself for 6 months, I would definitely look

into plaquenil as the more tolerable, more studied med/treatment for

babesia.

Lastly, some may (violently) disagree with me but I'm convinced

vitamin D deficiency is one of the things that predisposes someone to

getting especially sick from these infections. Just look at the

disease rate closer to the equator and you'll get your answer.

I got sick in Wisconsin where my D level was around 8. I brought it

up from 8 to around 50 and believe that, alone, is responsible for

the major positive turn in my health I've enjoyed in the last number

of months (I need to take 7,000 IUs to keep it there AND I live in

Arizona now). If your kids aren't getting a D3 supplement and they

start taking it, they may herx, as it acts like an antibiotic. I

would go very slowly and gently in the ramping up, should you decide

to pursue it as a treatment.

I hope this helps; doesn't muddy the water for you.

Blessings,

Donna

>

> My young children (age 2 and 3) got Lyme, Ehlichia and Babesia this

past summer ('08) in

> New York. They have been on antibiotics for the Lyme since Oct.

20th. I am going to begin

> mepron or something else to treat the co-infections this week

assuming I can find a doc. I

> am writing because I am entirely overwhelmed and depressed by

everything I am reading on

> the web and am hoping someone who caught Lyme and co-infections

relatively early and

> met with success can write me. My kids were being treated (at least

for the Lyme) within 3-5

> months of the tick bite. I need to know that there is a good chance

that we will not necessarily be looking at a lifetime or a minimum or

many years of disability and severe

> illness. Well, if it is true that is. I am also going to post to

ask parents for feedback about

> using Mepron on such young kids, but if you have that info and can

help me decide what to

> do that would be great. It certainly seems that it is riskier to do

nothing to treat the co-

> infections than to take the risk of using Mepron.

> Thank you so much for any help you can give.

> Beth

> beth@...

>

[Guest guest]

Hi Donna,

I was wondering if you got a blood test for the Vit. D in sufficiency (my

husband has this too).

Thanks,

From: flicka20042000 <flicka20042000@...>

Subject: [ ] Re: Can someone please give me hope?

Date: Sunday, November 23, 2008, 10:51 AM

Hi Beth,

Let me start by saying, I'm so sorry for you and your precious kids.

I believe, there is hope, however, for a few reasons but mainly

because the infections were caught relatively early.

I'm an RN, diagnosed with Lyme, Babesia and Bartonella 2 years ago.

My kids, thankfully have been, thusfar, not overcome by these

illnesses, despite being exposed in utero.

In the research, you'll find there are alot of people who's immune

systems are such that they test positively for lyme and friends but

are without symptoms. This is true, in part, because testing methods

are so inadequate (testing for antibodies doesn't necessarily mean

you have the disease, but is often treated as such). I think testing

for the DNA of the bacteria is more reliable but we're way behind the

morphing/varying strains of bacteria to fully rely on that yet

either.

With respect to the Mepron question...there is another, far more

studied, antimalarial that I would look into: Plaquenil. (I'm

taking it presently for a bartonella-like organism). They need to be

tested for an enzyme before taking it and have periodic eye exams,

but after taking Mepron myself for 6 months, I would definitely look

into plaquenil as the more tolerable, more studied med/treatment for

babesia.

Lastly, some may (violently) disagree with me but I'm convinced

vitamin D deficiency is one of the things that predisposes someone to

getting especially sick from these infections. Just look at the

disease rate closer to the equator and you'll get your answer.

I got sick in Wisconsin where my D level was around 8. I brought it

up from 8 to around 50 and believe that, alone, is responsible for

the major positive turn in my health I've enjoyed in the last number

of months (I need to take 7,000 IUs to keep it there AND I live in

Arizona now). If your kids aren't getting a D3 supplement and they

start taking it, they may herx, as it acts like an antibiotic. I

would go very slowly and gently in the ramping up, should you decide

to pursue it as a treatment.

I hope this helps; doesn't muddy the water for you.

Blessings,

Donna

>

> My young children (age 2 and 3) got Lyme, Ehlichia and Babesia this

past summer ('08) in

> New York. They have been on antibiotics for the Lyme since Oct.

20th. I am going to begin

> mepron or something else to treat the co-infections this week

assuming I can find a doc. I

> am writing because I am entirely overwhelmed and depressed by

everything I am reading on

> the web and am hoping someone who caught Lyme and co-infections

relatively early and

> met with success can write me. My kids were being treated (at least

for the Lyme) within 3-5

> months of the tick bite. I need to know that there is a good chance

that we will not necessarily be looking at a lifetime or a minimum or

many years of disability and severe

> illness. Well, if it is true that is. I am also going to post to

ask parents for feedback about

> using Mepron on such young kids, but if you have that info and can

help me decide what to

> do that would be great. It certainly seems that it is riskier to do

nothing to treat the co-

> infections than to take the risk of using Mepron.

> Thank you so much for any help you can give.

> Beth

> beth@...

>

[Guest guest]

Beth,

I've tried to condense a QA that was posted this summer by a

physician associated with the Vitamin D Council.

Here it is:

Answers to Vitamin D Questions from a Leading Physican

Cannell, M.D. answers some basic questions about the hottest

nutrient topic in resarch today

The following Q & A comes from the July, 2008 edition of the Vitamin D

Council newsletter.

Dr. Cannell also wants us to know that this past March, the The

Toronto Globe and Mail printed what he considers the best press

article ever written about vitamin D, titled " The vitamin D miracle:

Is it for real? " .

Here's the Q & A with Dr. Cannell, from the The Vitamin D Newsletter

for July, 2008:

As a general rule, old people need more than young people, big people

need more that little people, fat people need more than skinny

people, southern people need more than northern people, dark-skinned

people need more than fair skinned people, winter people need more

than summer people, sunblock lovers need more than sunblock haters,

sun-phobes need more than sun worshipers, and ill people may need

more than well people.

Regular readers should understand the reasons behind all these

statements except for the last one. However, don't feel bad, no one

understands it. Vitamin D is used by the body, metabolically

cleared, both to maintain wellness and to treat disease.

This is what I'd do. If you live in Florida and sunbathe once a

week, year around, do nothing. If you use suntan parlors once a

week, do nothing. However, if you have little UVB exposure, my

advice is as follows:

Well children under the age of two should take 1,000 IU per day, over

the age of two, 2,000 IU per day.

Well adults and adolescent between 80 p ounds and 130 pounds should

start with 3,000 IU per day, over 130 pounds but less than 170

pounds, 4,000 IU per day and over 170 pounds, 5,000 IU per day.

Two months later have your doctor order your first 25-hydroxy-vitamin

D blood test. Yes, start the vitamin D before you have the blood

test. Then adjust your dose so your 25(OH)D level is between 50 and

70 ng/ml, summer and winter. These are CONSERVATIVE dosage

recommendations.

Most people who avoid the sun – and virtually all dark-skinned

people – will have to increase their dose once they find their blood

level is still low, even after two months of the above dosage,

especially in the winter.

One more thing. Everyone has different vitamin D machinery. For

example, regular run-of-the-mill rickets does not require much

vitamin D to be cured. However, two other forms of rickets, both

rare, one caused by a defective vitamin D receptor and the other by a

malfunction of the enzyme that activates vitamin D, requires either

much more vitamin D or activated vitamin D (calcitriol) itself.

It seems likely that there is as much variation in the amount and

functionality of the enzyme that activates vitamin D as there is in

the vitamin D receptor. Furthermore, there are probably tissue

variations as well. That is, one vitamin D deficient child gets

rickets, another autism, another asthma, and yet another type-1

diabetes because functionality of the vitamin D machinery is

genetically variable both between children and within children's

tissues.

Therefore, some people, who have genetically determined decreased

functionality of the machinery in different tissues, will need more

vitamin D. How much more, we do not know. However, should you have

a child with autism, they will usually need more than a normal child

to overcome their genetic defects. None of what I say in this last

paragraph has been proven, it is theoretical.

4) What blood test should I have?

THE ONLY BLOOD TEST THAT CAN DIAGNOSE VITAMIN D DEFICIENCY IS A 25-

HYDROXY-VITAMIN D [25(OH)D]. Get your levels above 50 ng/ml, year

around.

Unfortunately, about 10-20% of the doctors in the USA order the wrong

test. They order a 1,25-dihydroxy-vitamin D, thinking that by

measuring the most potent steroid in the system, they are getting

useful information. They are not. 1,25-dihydroxy-vitamin D is an

adaptive hormone; it goes up and down with calcium intake.

Furthermore, as 25(OH)D is a weak steroid, when 25(OH)D levels are

low, the body compensates by increasing the amount of the potent

steroid, 1,25-dihydroxy-vitamin D.

Thus, a common cause of high 1,25-dihydroxy-vitamin D is low 25(OH)D

or vitamin D deficiency. So these doctors see the 1,25-dihydroxy-

vitamin D is normal or high and tell their patients that they are OK

when they are vitamin D deficient, advice that may prove fatal.

Furthermore, the reference labs in this country know this is

occurring but, to date, have not taken steps to educate the doctors

ordering the test because the reference labs make=2 0more money off a

1,25-dihydroxy-vitamin D than they do from a 25-hydroxy-vitamin D.

Although the misdiagnosis of vitamin D deficiency may prove fatal,

the doctors, and the reference labs, are ordering and processing the

wrong test.

5) Where should I get my vitamin D supplements?

Anywhere. Vitamin D in 1,000 IU tablets by Nature Made are available

in most pharmacies in the USA and Canada.

6) What is the ideal level of 25(OH)D?

We don't know. However, thanks to Bruce Hollis, Heaney, Neil

Binkley, and others, we now know the minimal acceptable level. It is

50 ng/ml. In a recent study, Heaney et al enlarged on Bruce Hollis's

seminal work by analyzing five studies in which both the parent

compound, cholecalciferol, and 25(OH)D levels were measured. It turn

out that the body does not reliably begin storing the parent compound

(cholecalciferol) in fat and muscle tissue until 25(OH)D levels get

above 50 ng/ml.

The average person starts to store cholecalciferol at 40 ng/ml, but

at 50 ng/ml, virtually everyone begins to store it for future use.

That is, at levels below 50 ng/ml, the body is usually using up the

vitamin D as fast as you make it or take it, indicating chronic

substrate starvation, not a good thing.

8) The vitamin D Council takes money from Bio Tech Pharmacal and

Lifespan Nutrition and now you are a consultant for Diasorin. With

those conflicts, how can I believe what you say?

Believe what you want, most people do anyway. As far as conflicts, I

am actively soliciting them. No conflicts means no money and I don't

want to work in a maximum security hospital for the criminally insane

all the rest of my life. (Whoops, I meant a " liberty impaired haven

for the mentally challenged who are criminally defiant " .)

Furthermore, the Vitamin D Council cannot do what we need to do on

$12,000.00 per year (what we get from Bio Tech Pharmacal). So if you

know anyone or any business with some money to donate that would

create a conflict, send them our way.

9) My blood test came back at 120 ng/ml. Am I toxic?

No, vitamin D toxicity has never been reliably documented with 25(OH)

D levels less than 200 ng/ml. Ranges for humans living and wo rking

in the sun are between 50 and 100 ng/ml.

Cannell, MD

The Vitamin D Council

Editor's Note: The Vitamin D Council is a non-profit organization

trying to end what Dr. Cannell calls " the epidemic of vitamin D

deficiency " . (Click to learn more about the Vitamin D Council and Dr.

Cannell.)

He relies on donations to publish the newsletter and maintain the

Council's website. You can subscribe or contribute online on the

Vitamin D Council home page. Or, send your tax-deductible

contributions to:

The Vitamin D Council

9100 San Gregorio Road

Atascadero, CA 93422

> >

> > My young children (age 2 and 3) got Lyme, Ehlichia and Babesia

this

> past summer ('08) in

> > New York. They have been on antibiotics for the Lyme since Oct.

> 20th. I am going to begin

> > mepron or something else to treat the co-infections this week

> assuming I can find a doc. I

> > am writing because I am entirely overwhelmed and depressed by

> everything I am reading on

> > the web and am hoping someone who caught Lyme and co-infections

> relatively early and

> > met with success can write me. My kids were being treated (at

least

> for the Lyme) within 3-5

> > months of the tick bite. I need to know that there is a good

chance

> that we will not necessarily be looking at a lifetime or a minimum

or

> many years of disability and severe

> > illness. Well, if it is true that is. I am also going to post to

> ask parents for feedback about

> > using Mepron on such young kids, but if you have that info and

can

> help me decide what to

> > do that would be great. It certainly seems that it is riskier to

do

> nothing to treat the co-

> > infections than to take the risk of using Mepron.

> > Thank you so much for any help you can give.

> > Beth

> > beth@

> >

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Yes, there is plenty of hope. You caught the lyme disease very soon after the

bites. Your kids may only need 3 weeks of treatment. But make sure you are

seeing a Lyme Literate Doctor and don't let any doctor tell you he knows about

lyme, do the research first. If you see a doctor that is not lyme literate, he

may put your kids on 3 week treatment automaticly. The lyme may return twice as

bad as before. Keep your chin up, you and your kids will make it through this.

Very few find out they have lyme as quickly as you did. I think your kids will

be fine in a quick time.

From: sadiegoose2003 <beth@...>

Subject: [ ] Can someone please give me hope?

Date: Saturday, November 22, 2008, 10:22 PM

My young children (age 2 and 3) got Lyme, Ehlichia and Babesia this past summer

('08) in

New York. They have been on antibiotics for the Lyme since Oct. 20th. I am

going to begin

mepron or something else to treat the co-infections this week assuming I can

find a doc. I

am writing because I am entirely overwhelmed and depressed by everything I am

reading on

the web and am hoping someone who caught Lyme and co-infections relatively

early and

met with success can write me. My kids were being treated (at least for the

Lyme) within 3-5

months of the tick bite. I need to know that there is a good chance that we

will not necessarily be looking at a lifetime or a minimum or many years of

disability and severe

illness. Well, if it is true that is. I am also going to post to ask parents

for feedback about

using Mepron on such young kids, but if you have that info and can help me

decide what to

do that would be great. It certainly seems that it is riskier to do nothing to

treat the co-

infections than to take the risk of using Mepron.

Thank you so much for any help you can give.

Beth

beth@...

------------------------------------

The book, Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub is now

available for purchase. Please visit the official website at

http://cureunknown.com/index.html for more information.