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But you have the knowledge that most Dr. don't have. I belive you look at other

things as well as the screening test. I also think you never stop gaining

knowledge and are trying to pass this on to others.

> > >

> > > I need to clarify one statement I made. The easy test, ELISA,

> > gives false

> > > positives 30 - 50% of the time. It is not a good test.

> > Unfortunately too

> > > many non Lyme-literate docs don't understand that. Within the

> > recent past,

> > > a new DNA test has been developed but I don't know anything about

> > it except

> > > it is only valid early in the disease (if that). There are good

> > tests for

> > > Lyme, but they are more difficult to do. I went through three

> > stages of

> > > testing before mine showed positive. My understanding is that false

> > > positives are rare.

> > >

> > > When I got sick in 1985, the first thing my doc considered was

> > Lyme. He

> > > queried me about a rash but unfortunately, didn't do the screening

> > test. He

> > > diagnosed ankylosing spondylitis although the only test for it was

> > negative.

> > > It was a clinical diagnosis and unfortunately for me, it was

> > wrong. I had

> > > every symptom of Lyme, not spondylitis.

> > >

> > > Three years later, after I moved to Minnesota, the doctor I saw was

> > > convinced I had Lyme but the ELISA test was negative. She had no

> > > suggestions for anything further. I was in terrible pain, on

> > > anti-inflammatories, and would have killed for them. The ELISA

> > test is an

> > > antibody test and antibodies don't last forever. By 1986 or 1987,

> > I had

> > > significantly high antibodies that destroyed my thyroid. Now, my

> > antibodies

> > > are zero. Because they are zero does not mean I'm not hypothyroid.

> > >

> > > I believe I picked up Lyme in Arkansas while walking through the

> > woods. My

> > > sister-in-law had many Lyme symptoms over the years and died

> > suddenly, of no

> > > apparent cause, at age 53. She just dropped over. The autopsy found

> > > nothing - no drugs, no alcohol, no heart disease. I seriously

> > doubt they

> > > tested for Lyme as it was an official law enforcement

> > investigation. Her

> > > husband was formally diagnosed a couple of years ago, treated

> > promptly and

> > > is fine today. My mother-in-law got horribly sick and was

> > diagnosed with

> > > Epstein Barr. She was nearly bedridden for several months and

> > never did

> > > fully recover. We own 80 acres in western Arkansas. She loved the

> > land and

> > > frequently went there just to walk around. It is now for sale.

> > >

> > > " Under Our Skin " is a documentary depicting the devastating

> > effects in

> > > several. It is sad that they are victims, not only of the disease,

> > but of

> > > the medical profession as well. Here is a short video of one,

> > > Wermers who died not long after this filming. She was only 41.

> > >

> > > <http://www.youtube.com/watch?v=vQg2QfDfSHY & feature=related>

> > > & feature=related

> > >

> > > Here's a clip of a park ranger who knew exactly what he was

> > dealing with.

> > > He saved the tick which tested positive. Still, it took five

> > doctors to get

> > > treatment and by then, the treatment was prolonged. He has

> > recovered.

> > >

> > > <http://www.youtube.com/watch?v=WuzPJ_C4Ijs & feature=related>

> > > & feature=related

> > >

> > > Here, he talks about what he went through to be diagnosed and

> > treated

> > > properly.

> > > <http://www.youtube.com/watch?v=W-nJDHVD8QQ & feature=channel>

> > > & feature=channel

> > >

> > > These are all short clips and are informative.

> > >

> > > Val

> > >

> >

> >

> >

>

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Recommend looking at http://www.niaid.nih.gov/topics/lymedisease/understanding/pages/chronic.aspxIt appears that NIH has funded quite a bit of Lyme research.CE Grim MDFrancis, there are many conditions that are treated where no controlled studies or good tests are available. I was treated for 14 years on the basis of a clinical diagnosis of ankylosing spondylitis. The only test available for ankylosing spondylitis is HLAB27, and all that tests for is the genetic marker. One can have AS without the marker. I supposedly did. Lyme is likewise a clinical diagnosis. Tests do exist but the usual screening test yields false negatives half the time. I have had advanced testing and have no doubt the cause of all my illnesses over 25 years has been Lyme. I just wish the pieces could have been put together sooner. I’ve lost a lot of life. I don’t know how many types of Lyme there are. No one does because there has not been adequate research. As long as we have groups like IDSA who damn anyone investigating, we won’t have much research. My treatment must have some basis because insurance is paying toward my drugs. I pay my doctor cash. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Francis Bill SUSPECTED PAIf there is no good test to show you have and disease then Dr. can't treat it. Is there more then one type of Lyme's? Yes Dr do screw up. Insurance only pays for proven treatment. My sister works at a lab at dartmouth the lab she is working in does research on e-coli. Not sure what more they need to know. There grants for just this lab is $1,000,000 a year. How could one have this money go tolyme,s research? With as much as Dr Grim knows about Conn's there is a lot he may not know. With Conn's the current screening test is going to miss at least 10% of us that have it.

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I appreciate your sending this. None of those articles, however, studied

long-term treatment of people with active Lyme bacteria.

Val

From: hyperaldosteronism [mailto:hyperaldosteronism ]

On Behalf Of Clarence Grim

Recommend looking at

http://www.niaid.nih.gov/topics/lymedisease/understanding/pages/chronic.aspx

It

appears that NIH has funded quite a bit of Lyme research.

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Note in several of the studies the improvement was about 40% in the placebo groups. This would mean that one would need a pretty big sample size to do a long term study. I would think an online group might be a very good way to approach this. As a small business or even as an individual one can apply to NIH for grants to do this sort of thing using the SBIR mechanism. About $2.9 billion available. Go to SBIR.gov for details.Perhaps one of the Lyme groups is a small business and could put together a proposal.I would be happy to consult on this but better to have someone in ID.I have a nephew who is an ID expert in CA who I will talk to also.CE Grim MDI appreciate your sending this. None of those articles, however, studied long-term treatment of people with active Lyme bacteria. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence GrimRecommend looking at http://www.niaid.nih.gov/topics/lymedisease/understanding/pages/chronic.aspx It appears that NIH has funded quite a bit of Lyme research.

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It is not that hard to have a group become a non profit organization.

As of yet I don't know if the reason I am sick is conn's or something else. The

not knowing is worse then knowing. I just don't know how to plan on any thing.

If I do find out why I am sick I would want to get the right treatment. If there

was no know proven treatment and someone had an unproven treatment I am not sure

if I would try it.

We are all terminal.

>

> >

> > I appreciate your sending this. None of those articles, however,

> > studied long-term treatment of people with active Lyme bacteria.

> >

> >

> >

> > Val

> >

> >

> >

> >

> >

> > From: hyperaldosteronism

[mailto:hyperaldosteronism

> > ] On Behalf Of Clarence Grim

> >

> >

> > Recommend looking at

> >

> >

> >

> > http://www.niaid.nih.gov/topics/lymedisease/understanding/pages/chronic.aspx

> >

> >

> >

> > It appears that NIH has funded quite a bit of Lyme research.

> >

> >

> >

> >

> >

>

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I recently was treated for an infected tooth. I was given a high dose of

penicillin. I think the penicillin made me sicker then the infection.

Patients also risk negative and sometimes serious reactions to the

antibiotics themselves.

At least in the elderly it is not uncommon to put them on full time antibiotics.

With them it doesn't matter it they end up dying from a superbug.

In addition to personal safety concerns, unnecessary antibiotic use

contributes to the serious, growing problem of antimicrobial

resistance. Overuse of antibiotics has led to many bacteria developing

resistance to the very drugs doctors once used to combat them.

> >

> > >

> > > I appreciate your sending this. None of those articles, however,

> > > studied long-term treatment of people with active Lyme bacteria.

> > >

> > >

> > >

> > > Val

> > >

> > >

> > >

> > >

> > >

> > > From: hyperaldosteronism

[mailto:hyperaldosteronism

> > > ] On Behalf Of Clarence Grim

> > >

> > >

> > > Recommend looking at

> > >

> > >

> > >

> > >

http://www.niaid.nih.gov/topics/lymedisease/understanding/pages/chronic.aspx

> > >

> > >

> > >

> > > It appears that NIH has funded quite a bit of Lyme research.

> > >

> > >

> > >

> > >

> > >

> >

>

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Francis, where do you live?

What did the penicillin do to you in terms of making you sick?

All of your comments about antibiotic use are well taken. For people like me, however, with

evidence of active Lyme infection, there is no choice. My quality of life was getting worse,

daily. Treatment for PA (still on

it) didn’t make me better. This

is my last hope.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Francis Bill

SUSPECTED PA

I recently was treated for an infected tooth. I was given a

high dose of penicillin. I think the penicillin made me sicker then the

infection.

Patients also risk negative and sometimes serious reactions to the

antibiotics themselves.

At least in the elderly it is not uncommon to put them on full time

antibiotics. With them it doesn't matter it they end up dying from a superbug.

In addition to personal safety concerns, unnecessary antibiotic use

contributes to the serious, growing problem of antimicrobial

resistance. Overuse of antibiotics has led to many bacteria developing

resistance to the very drugs doctors once used to combat them.

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I live in New Hampshire. The penicillin made me very tired. Was told this is

becauses of the amount I was taking. I was taking 1000MG a day.

>

> Francis, where do you live? What did the penicillin do to you in terms of

> making you sick?

>

> All of your comments about antibiotic use are well taken. For people like

> me, however, with evidence of active Lyme infection, there is no choice. My

> quality of life was getting worse, daily. Treatment for PA (still on it)

> didn't make me better. This is my last hope.

>

> Val

>

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of Francis Bill

> SUSPECTED PA

>

>

> I recently was treated for an infected tooth. I was given a high dose of

> penicillin. I think the penicillin made me sicker then the infection.

>

> Patients also risk negative and sometimes serious reactions to the

> antibiotics themselves.

>

> At least in the elderly it is not uncommon to put them on full time

> antibiotics. With them it doesn't matter it they end up dying from a

> superbug.

>

> In addition to personal safety concerns, unnecessary antibiotic use

> contributes to the serious, growing problem of antimicrobial

> resistance. Overuse of antibiotics has led to many bacteria developing

> resistance to the very drugs doctors once used to combat them.

>

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A non-profit cannot apply for the SBIR granting mechanismSee SBIR.govIt is not that hard to have a group become a non profit organization. As of yet I don't know if the reason I am sick is conn's or something else. The not knowing is worse then knowing. I just don't know how to plan on any thing. If I do find out why I am sick I would want to get the right treatment. If there was no know proven treatment and someone had an unproven treatment I am not sure if I would try it. We are all terminal. > > >> > I appreciate your sending this. None of those articles, however, > > studied long-term treatment of people with active Lyme bacteria.> >> >> >> > Val> >> >> >> >> >> > From: hyperaldosteronism [mailto:hyperaldosteronism > > ] On Behalf Of Clarence Grim> >> >> > Recommend looking at> >> >> >> > http://www.niaid.nih.gov/topics/lymedisease/understanding/pages/chronic.aspx> >> >> >> > It appears that NIH has funded quite a bit of Lyme research.> >> >> >> >> >>

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Is it possable for a mother to pass her lyme's on to her children?

> >

> > Francis, where do you live? What did the penicillin do to you in terms of

> > making you sick?

> >

> > All of your comments about antibiotic use are well taken. For people like

> > me, however, with evidence of active Lyme infection, there is no choice. My

> > quality of life was getting worse, daily. Treatment for PA (still on it)

> > didn't make me better. This is my last hope.

> >

> > Val

> >

> >

> > From: hyperaldosteronism

> > [mailto:hyperaldosteronism ] On Behalf Of Francis Bill

> > SUSPECTED PA

> >

> >

> > I recently was treated for an infected tooth. I was given a high dose of

> > penicillin. I think the penicillin made me sicker then the infection.

> >

> > Patients also risk negative and sometimes serious reactions to the

> > antibiotics themselves.

> >

> > At least in the elderly it is not uncommon to put them on full time

> > antibiotics. With them it doesn't matter it they end up dying from a

> > superbug.

> >

> > In addition to personal safety concerns, unnecessary antibiotic use

> > contributes to the serious, growing problem of antimicrobial

> > resistance. Overuse of antibiotics has led to many bacteria developing

> > resistance to the very drugs doctors once used to combat them.

> >

>

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Not that the CDC mentions. Is it possable for a mother to pass her lyme's on to her children? > >> > Francis, where do you live? What did the penicillin do to you in terms of> > making you sick?> > > > All of your comments about antibiotic use are well taken. For people like> > me, however, with evidence of active Lyme infection, there is no choice. My> > quality of life was getting worse, daily. Treatment for PA (still on it)> > didn't make me better. This is my last hope.> > > > Val> > > > > > From: hyperaldosteronism > > [mailto:hyperaldosteronism ] On Behalf Of Francis Bill> > SUSPECTED PA> > > > > > I recently was treated for an infected tooth. I was given a high dose of> > penicillin. I think the penicillin made me sicker then the infection. > > > > Patients also risk negative and sometimes serious reactions to the> > antibiotics themselves. > > > > At least in the elderly it is not uncommon to put them on full time> > antibiotics. With them it doesn't matter it they end up dying from a> > superbug. > > > > In addition to personal safety concerns, unnecessary antibiotic use> > contributes to the serious, growing problem of antimicrobial> > resistance. Overuse of antibiotics has led to many bacteria developing> > resistance to the very drugs doctors once used to combat them.> >>

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There are other grants that non profits can get.

http://grants.gov/aboutgrants/eligibility.jsp

> > >

> > > >

> > > > I appreciate your sending this. None of those articles, however,

> > > > studied long-term treatment of people with active Lyme bacteria.

> > > >

> > > >

> > > >

> > > > Val

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > From: hyperaldosteronism

[mailto:hyperaldosteronism

> > > > ] On Behalf Of Clarence Grim

> > > >

> > > >

> > > > Recommend looking at

> > > >

> > > >

> > > >

> > > >

http://www.niaid.nih.gov/topics/lymedisease/understanding/pages/chronic.aspx

> > > >

> > > >

> > > >

> > > > It appears that NIH has funded quite a bit of Lyme research.

> > > >

> > > >

> > > >

> > > >

> > > >

> > >

> >

> >

> >

>

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Then the woman on the NORD site would be a first. Looks like there needs to be a

group site set up for Lyme's. Of course they need someone that can provide good

information. Anyone can join the NORD group.

> > > >

> > > > Francis, where do you live? What did the penicillin do to you in

> > terms of

> > > > making you sick?

> > > >

> > > > All of your comments about antibiotic use are well taken. For

> > people like

> > > > me, however, with evidence of active Lyme infection, there is no

> > choice. My

> > > > quality of life was getting worse, daily. Treatment for PA

> > (still on it)

> > > > didn't make me better. This is my last hope.

> > > >

> > > > Val

> > > >

> > > >

> > > > From: hyperaldosteronism

> > > > [mailto:hyperaldosteronism ] On Behalf Of Francis

> > Bill

> > > > SUSPECTED PA

> > > >

> > > >

> > > > I recently was treated for an infected tooth. I was given a high

> > dose of

> > > > penicillin. I think the penicillin made me sicker then the

> > infection.

> > > >

> > > > Patients also risk negative and sometimes serious reactions to the

> > > > antibiotics themselves.

> > > >

> > > > At least in the elderly it is not uncommon to put them on full

> > time

> > > > antibiotics. With them it doesn't matter it they end up dying

> > from a

> > > > superbug.

> > > >

> > > > In addition to personal safety concerns, unnecessary antibiotic

> > use

> > > > contributes to the serious, growing problem of antimicrobial

> > > > resistance. Overuse of antibiotics has led to many bacteria

> > developing

> > > > resistance to the very drugs doctors once used to combat them.

> > > >

> > >

> >

> >

> >

>

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The documentary “Under Our Skin” shows one woman who

transmitted Lyme to her baby. There

is nothing known, however, of how widespread that might be.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Francis Bill

SUSPECTED PA

Is it possable for a mother to

pass her lyme's on to her children?

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What woman, Francis?

I’d like to read it.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Francis Bill

SUSPECTED PA

Then the woman on the NORD site would be a first. Looks like

there needs to be a group site set up for Lyme's. Of course they need someone

that can provide good information. Anyone can join the NORD group.

>

> > Is it possable for a mother to pass her lyme's

on to her children?

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My guess is it would be somewhat difficult to be sure there was not a sneaky tick bite to the baby?CE Grim MDWhat woman, Francis? I’d like to read it. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Francis Bill SUSPECTED PAThen the woman on the NORD site would be a first. Looks like there needs to be a group site set up for Lyme's. Of course they need someone that can provide good information. Anyone can join the NORD group. > > > Is it possable for a mother to pass her lyme's on to her children?

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I think in Under Our Skin, it was found in the umbilical

cord or placenta. Do you want to

watch the movie?

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

My guess is it would be somewhat difficult to be sure there

was not a sneaky tick bite to the baby?

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Seems like this site would have the most up to date information for lyme

http://www.columbia-lyme.org/index.html

>

> I think in Under Our Skin, it was found in the umbilical cord or placenta.

> Do you want to watch the movie?

>

> Val

>

>

> From: hyperaldosteronism

> [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

>

>

> My guess is it would be somewhat difficult to be sure there was not a sneaky

> tick bite to the baby?

>

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Maybe could get Dr. Willy Burgdorfer who discovered the spiral shaped organism

to get involved in a group.

> >

> > I think in Under Our Skin, it was found in the umbilical cord or placenta.

> > Do you want to watch the movie?

> >

> > Val

> >

> >

> > From: hyperaldosteronism

> > [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

> >

> >

> > My guess is it would be somewhat difficult to be sure there was not a sneaky

> > tick bite to the baby?

> >

>

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have you tried a search of Pubmed selecting books?

http://www.ncbi.nlm.nih.gov/sites/entrez

I find 100 items, that would be 100 paragraphs in maybe 25 books.

I usually look at HSTAT first.

12 items in Medical Microbiology

Baron, , editor.

Galveston (TX): University of Texas Medical Branch; c1996

11 items in Health Services/Technology Assessment Text (HSTAT) Archive Collection

Bethesda (MD): National Library of Medicine (US); 1977-2000

11 items in AHFS Consumer Medication Information

American Society of Health-System Pharmacists

Bethesda (MD): American Society of Health-System Pharmacists, Inc.; c2009

Your search found the following chapters in Medical Microbiology:

Frontmatter, appendices, and other book material:

1:

Diagnosis

2:

Control

3:

Epidemiology

4:

Pathogenesis

5:

Treatment

6:

Spirochetes

Leptospira

7:

Epidemiology

8:

Clinical Manifestations

9:

Pathogenesis

Leptospira

10:

Introduction

Bacterial Pathogenesis

11:

Host Susceptibility

Microbiology of the Nervous System

12:

Spirochetes

our search found the following chapters in HSTAT Archive Collection:

New Vaccinations: Lyme Disease, Rotavirus, Hepatitis A and Pneumococcal Disease

1:

Lyme Disease Vaccine

2:

New Vaccinations: Lyme Disease, Rotavirus, Hepatitis A and Pneumococcal Disease

3:

Cost

4:

Effectiveness

5:

Executive Summary

6:

Appendix III: Public Comment

7:

Recommendations

8:

Recommendations

Clinician's Handbook of Preventive Services, 2nd Edition. PPIP

9:

Table C.1. Infectious Diseases Designated as Notifiable at the National Level - United States, 1997

10:

Appendix C—Reporting of Notifiable Diseases

Health Technology Advisory Committee-Minnesota (Static collection)

11:

Health Technology Advisory Committee-Minnesota (Static collection)

RE: Re: Lyme research

The documentary “Under Our Skin” shows one woman who transmitted Lyme to her baby. There is nothing known, however, of how widespread that might be.

Val

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Looking at SX for lyme can see where some are the same as others here have.

There are some SX that are only found in Conn's as well as some only found in

Lyme.

Both are overlooked by many Drs. Many diseases get over looked by Drs. Sometimes

in only takes what should be a simple blood test to diagnoses a disease.

Most Dr. appointments are 15 min. and I find that Drs. seemed to be trained to

contron this time. In so doing we have to learn how to tell the Dr what is our

SX while the Dr is looking up or writing there notes on the computer.

When I get a copy of my records I find that many times what the Dr writes in the

notes isn't what what I say but what there impression is of what I said.

Sometimes they have put answers to questions they haven't asked.

> > >

> > > I think in Under Our Skin, it was found in the umbilical cord or placenta.

> > > Do you want to watch the movie?

> > >

> > > Val

> > >

> > >

> > > From: hyperaldosteronism

> > > [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

> > >

> > >

> > > My guess is it would be somewhat difficult to be sure there was not a

sneaky

> > > tick bite to the baby?

> > >

> >

>

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Maybe helps:

http://www.cdc.gov/nczved/divisions/dvbid/publications/lyme.html

map tick distribution

ftp://ftp.cdc.gov/pub/Publications/mmwr/rr/rr4807.pdf

interesting high risk in NJ, DE, RI, parts of NY, PA?

regards

Re: Lyme research

Maybe could get Dr. Willy Burgdorfer who discovered the spiral shaped organism to get involved in a group.> >> > I think in Under Our Skin, it was found in the umbilical cord or placenta.> > Do you want to watch the movie?> > > > Val> >

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and WI and MNMaybe helps:http://www.cdc.gov/nczved/divisions/dvbid/publications/lyme.html map tick distributionftp://ftp.cdc.gov/pub/Publications/mmwr/rr/rr4807.pdfinteresting high risk in NJ, DE, RI, parts of NY, PA? regards Re: Lyme research Maybe could get Dr. Willy Burgdorfer who discovered the spiral shaped organism to get involved in a group.> >> > I think in Under Our Skin, it was found in the umbilical cord or placenta.> > Do you want to watch the movie?> > > > Val> >

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Lyme is named after Lyme Connecticut as this was where it was found.

> > >

> > > I think in Under Our Skin, it was found in the umbilical cord or

placenta.

> > > Do you want to watch the movie?

> > >

> > > Val

> > >

>

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