Re: Lyme research

[Guest guest]

Like how many deer they got in NYC?

rs must be people?

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> >

[Guest guest]

I'm in CA seeing my Lyme doc so I'm a bit behind. The Columbia University program is a really important contribution to the scientific study of Lyme. The director of that program certainly understands chronic Lyme.

Val

>

> >

> > Seems like this site would have the most up to date information for lyme http://www.columbia-lyme.org/index.html

[Guest guest]

Ever thought about doing there 2 day program.

> > >

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

> for lyme http://www.columbia-lyme.org/index.html [2]

>

>

>

[Guest guest]

Don’t know about it.

What is it?

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Francis Bill

SUSPECTED PA

Ever thought about doing there 2 day program.

> I'm in CA seeing my Lyme doc so I'm a bit behind. The Columbia

> University program is a really important contribution to the

> scientific study of Lyme. The director of that program certainly

> understands chronic Lyme.

[Guest guest]

If you suffer from neurocognitive and/or neuropsychiatric symptoms which may be

due to Lyme or another tick-borne disease, please consider coming for the

two-day, outpatient, second-opinion evaluation at the Lyme and Tick-Borne

Diseases Evaluation Service. For further information, please contact Dr. Kathy

Corbera at . Inasmuch as the evaluation is comprehensive and a

limited number of patients can be seen each week to accommodate the large volume

of requests for appointments, it might be several weeks before your telephone

call is returned to set up your appointment. There is a waiting list. We

appreciate your patience.

>

> > I'm in CA seeing my Lyme doc so I'm a bit behind. The Columbia

> > University program is a really important contribution to the

> > scientific study of Lyme. The director of that program certainly

> > understands chronic Lyme.

>

[Guest guest]

How much does this cost?On Apr 11, 2010, at 2:24 PM, Francis Bill SUSPECTED PA wrote:If you suffer from neurocognitive and/or neuropsychiatric symptoms which may be due to Lyme or another tick-borne disease, please consider coming for the two-day, outpatient, second-opinion evaluation at the Lyme and Tick-Borne Diseases Evaluation Service. For further information, please contact Dr. Kathy Corbera at . Inasmuch as the evaluation is comprehensive and a limited number of patients can be seen each week to accommodate the large volume of requests for appointments, it might be several weeks before your telephone call is returned to set up your appointment. There is a waiting list. We appreciate your patience. > > > I'm in CA seeing my Lyme doc so I'm a bit behind. The Columbia> > University program is a really important contribution to the> > scientific study of Lyme. The director of that program certainly> > understands chronic Lyme.>

[Guest guest]

I guess you would have to call them to find out the cost. If you haven't looked

at this site please do http://www.columbia-lyme.org/index.html

> > >

> > > > I'm in CA seeing my Lyme doc so I'm a bit behind. The Columbia

> > > > University program is a really important contribution to the

> > > > scientific study of Lyme. The director of that program certainly

> > > > understands chronic Lyme.

> > >

> >

> >

> >

>

[Guest guest]

Ahh. Interesting idea. Thanks for that.

I saw my Lyme doc Friday. He says that my positive antigen test is clear proof

of Lyme. I specifically queried him about the validity of that test.

Val

>

> If you suffer from neurocognitive and/or neuropsychiatric symptoms which may

be due to Lyme or another tick-borne disease, please consider coming for the

two-day, outpatient, second-opinion evaluation at the Lyme and Tick-Borne

Diseases Evaluation Service. For further information, please contact Dr. Kathy

Corbera at . Inasmuch as the evaluation is comprehensive and a

limited number of patients can be seen each week to accommodate the large volume

of requests for appointments, it might be several weeks before your telephone

call is returned to set up your appointment. There is a waiting list. We

appreciate your patience.

[Guest guest]

I don't have time. Please see what you can find about the cost. My guess is thousands.CE Grim MDOn Apr 11, 2010, at 7:26 PM, Francis Bill SUSPECTED PA wrote:I guess you would have to call them to find out the cost. If you haven't looked at this site please do http://www.columbia-lyme.org/index.html --- In hyperaldosteronism , Clarence Grim wrote:>> How much does this cost?> On Apr 11, 2010, at 2:24 PM, Francis Bill SUSPECTED PA wrote:> > > If you suffer from neurocognitive and/or neuropsychiatric symptoms > > which may be due to Lyme or another tick-borne disease, please > > consider coming for the two-day, outpatient, second-opinion > > evaluation at the Lyme and Tick-Borne Diseases Evaluation Service. > > For further information, please contact Dr. Kathy Corbera at (212) > > 543-6508. Inasmuch as the evaluation is comprehensive and a limited > > number of patients can be seen each week to accommodate the large > > volume of requests for appointments, it might be several weeks > > before your telephone call is returned to set up your appointment. > > There is a waiting list. We appreciate your patience.> >> > > > >> > > > I'm in CA seeing my Lyme doc so I'm a bit behind. The Columbia> > > > University program is a really important contribution to the> > > > scientific study of Lyme. The director of that program certainly> > > > understands chronic Lyme.> > >> >> >> >>

[Guest guest]

I have had 2 members of my extended family that have had lyme. So have some

interest in learning more about it. I know some of my SX are the same as lyme

but have other SX that fit Conn's I also have the tumor. I do need to get

someone that can tell my for sure if it is Conn's. If it turns out I don't have

Conn's then I would look at possible lyme I was tested for lyme but am finding

the test doesn't always find it.

I belive that Columbia University is very well respected. They seem to have done

a lot of research on lyme. they have on going research as to late stage lyme and

how to treat it.

I wouldn't think they would charge any more then any other medical center for

there two-day, outpatient, second-opinion

evaluation.

When I had a over night sleep study done the VA did pay for it but I was sent

the bill it was around $2500.

> > > > >

> > > > > > I'm in CA seeing my Lyme doc so I'm a bit behind. The Columbia

> > > > > > University program is a really important contribution to the

> > > > > > scientific study of Lyme. The director of that program

> > certainly

> > > > > > understands chronic Lyme.

> > > > >

> > > >

> > > >

> > > >

> > >

> >

> >

> >

>

[Guest guest]

It may be a research project and may not cost you a lot. The doctor who heads

up the Lyme research unit (Fallon) often speaks at ILADS meetings.

Val

>

> I have had 2 members of my extended family that have had lyme. So have some

interest in learning more about it. I know some of my SX are the same as lyme

but have other SX that fit Conn's I also have the tumor. I do need to get

someone that can tell my for sure if it is Conn's. If it turns out I don't have

Conn's then I would look at possible lyme I was tested for lyme but am finding

the test doesn't always find it.

>

> I belive that Columbia University is very well respected. They seem to have

done a lot of research on lyme. they have on going research as to late stage

lyme and how to treat it.

>

> I wouldn't think they would charge any more then any other medical center for

there two-day, outpatient, second-opinion

> evaluation.

[Guest guest]

I would ask the VA about Lyme. They must have lots of data?I would be interested in the cost still. On Apr 11, 2010, at 10:00 PM, Francis Bill SUSPECTED PA wrote:I have had 2 members of my extended family that have had lyme. So have some interest in learning more about it. I know some of my SX are the same as lyme but have other SX that fit Conn's I also have the tumor. I do need to get someone that can tell my for sure if it is Conn's. If it turns out I don't have Conn's then I would look at possible lyme I was tested for lyme but am finding the test doesn't always find it. I belive that Columbia University is very well respected. They seem to have done a lot of research on lyme. they have on going research as to late stage lyme and how to treat it. I wouldn't think they would charge any more then any other medical center for there two-day, outpatient, second-opinionevaluation.When I had a over night sleep study done the VA did pay for it but I was sent the bill it was around $2500. > > > > >> > > > > > I'm in CA seeing my Lyme doc so I'm a bit behind. The Columbia> > > > > > University program is a really important contribution to the> > > > > > scientific study of Lyme. The director of that program > > certainly> > > > > > understands chronic Lyme.> > > > >> > > >> > > >> > > >> > >> >> >> >>

[Guest guest]

When was he first time you told your Dr about a tick bite and when was the first time you were tested?CE Grim MDIt means current Lyme activity. I am in such a condition that he wanted to start IV antibiotics. I hesitated so we're going with IM and some orals for another four weeks and will evaluate then.Bartonella is known for its anxiety-producing symptoms. My "brittles" are at least 75% decreased since being on Levaquin. I still have a long way to go, though.I have no idea what percent of the population has Lyme with no symptoms. I imagine if a person has no symptoms, they are never tested. I don't believe I got it here; I think I got it in Arkansas.I do believe it can be cured, but I don't know if a cure is possible for someone who has been sick as long as I.From what I read, cortisone causes Lyme spirochetes to multiply and become more active. I had a cortisone knee injection 1.5 years ago and ended up in the hospital. It sent my brittles over the edge. Each time I've had an episode like that, my K was about 3.5. It sent my heart rate and BP sky high. I really wanted to blame it on low K but that probably wasn't low enough to cause my symptoms. When I first got sick with swollen knees and terrible fatigue, I was given prednisone. At that time, it sent me over the edge, too. It was the last thing I should have had.Val> >> > I saw my Lyme doc Friday. He says that my positive antigen test is > > clear proof of Lyme. I specifically queried him about the validity

[Guest guest]

I would not

expect the VA to have a clue about Lyme testing outside of the initial ELISA

screen.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of lowerbp2

But I am sure VA can test for Lyme. " Francis Bill SUSPECTED PA " wrote:

At

this time I would not meet there guide lines you have to suffer from

neurocognitive and/or neuropsychiatric symptoms. More then likey the VA would

not cover a study out side of the VA.

[Guest guest]

No, there are no Lyme-literate boards. LLMDs are certified in other

disciplines. They become LL through

study and practice.

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of Clarence Grim

Again are there Lyme literate Boards? How does one get

certified as LL?

CE

On

Apr 12, 2010, at 12:04 AM, Valarie wrote:

I think Columbia would test

you using the proper tests. Alternatively,

you can find a Lyme-literate MD.

Val

[Guest guest]

This is the lab report for VA lyme test.

10/24/2007 14:41 SERUM LYME-: NEG

A Negative serologic test should not be the only criteria for

excluding BORRELIA BURGDORFERI infection. If Lyme Disease is

strongly suspected, a second specimen collected 2-4 weeks after the

first specimen should be tested. Immune response may not be

detectable also in Lyme patients treated with antibiotic in early

stage of infection.

Test performed at VA CT,

> >

>

[Guest guest]

and when was this drawn after the tick bite?On Apr 12, 2010, at 11:20 AM, Francis Bill SUSPECTED PA wrote:This is the lab report for VA lyme test.10/24/2007 14:41 SERUM LYME-: NEGA Negative serologic test should not be the only criteria forexcluding BORRELIA BURGDORFERI infection. If Lyme Disease isstrongly suspected, a second specimen collected 2-4 weeks after thefirst specimen should be tested. Immune response may not bedetectable also in Lyme patients treated with antibiotic in earlystage of infection.Test performed at VA CT,> >>

[Guest guest]

I feel that I have better chance of having Conn's then Lyme. Not even sure if I

had tick bite only know that I have had them on me. I also have to say I have

never see a deer tick on or off me.

But to give a better answer this test was done about two years after all my SX

started.

> > > >

> > >

> >

> >

> >

>

[Guest guest]

www.lymephotos.comSomeone on a forum I regularly visit said to go on this site the treatment works!Just thought it may help Val.Take care everyone, thanks for your help dr.grim! Ill post when I have my answer, just got to keep positive. I've got to unsubscribe as to many emails!Kind regardsMandySent using BlackBerry® from OrangeDate: Mon, 12 Apr 2010 20:00:06 -0000To: <hyperaldosteronism >Subject: Re: Lyme research I feel that I have better chance of having Conn's then Lyme. Not even sure if I had tick bite only know that I have had them on me. I also have to say I have never see a deer tick on or off me. But to give a better answer this test was done about two years after all my SX started. > > > >> > >> >> >> >>

[Guest guest]

Thanks, Mandy. I

couldn’t consider all that salt.

Did you know you can set your Yahoo to “No mail” and then

just go to the site and read when you want to?

Val

From: hyperaldosteronism

[mailto:hyperaldosteronism ] On Behalf Of moseleymand@...

www.lymephotos.com

Someone on a forum I regularly visit said to go on this site the treatment

works!

Just thought it may help Val.

Take care everyone, thanks for your help dr.grim!

Ill post when I have my answer, just got to keep positive. I've got to

unsubscribe as to many emails!

[Guest guest]

Yes you can also get a daily digest and open only those you want. I suggest we move the Lyme discussion to the Yahoo group that deals with this.CE Grim MDThanks, Mandy. I couldn’t consider all that salt. Did you know you can set your Yahoo to “No mail” and then just go to the site and read when you want to? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of moseleymandhotmail (DOT) co.ukwww.lymephotos.comSomeone on a forum I regularly visit said to go on this site the treatment works!Just thought it may help Val.Take care everyone, thanks for your help dr.grim!Ill post when I have my answer, just got to keep positive. I've got to unsubscribe as to many emails!

[Guest guest]

Then how else do you Dx it?Val you can answer me directly so we dont overwhelm others. CEYou got the ELISA test. If tested too early, it can miss because antibodies have not yet formed. If used too late, antibodies could have come and gone. The test misses 50% of all cases. It even says, “A Negative serologic test should not be the only criteria for excluding BORRELIA BURGDORFERI infection.” Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Francis Bill SUSPECTED PAThis is the lab report for VA lyme test.10/24/2007 14:41 SERUM LYME-: NEGA Negative serologic test should not be the only criteria forexcluding BORRELIA BURGDORFERI infection. If Lyme Disease isstrongly suspected, a second specimen collected 2-4 weeks after thefirst specimen should be tested. Immune response may not bedetectable also in Lyme patients treated with antibiotic in earlystage of infection.Test performed at VA CT,>> But I am sure VA can test for Lyme.

[Guest guest]

Oh, stupid me, sorry forgot the salt!!No I didn't know that, thanks I may do that then, be good to come and say hi.Take care good luck! And don't give up mate :)MandySent using BlackBerry® from OrangeDate: Mon, 12 Apr 2010 15:19:56 -0600To: <hyperaldosteronism >Subject: RE: Re: Lyme research Thanks, Mandy. Icouldn’t consider all that salt. Did you know you can set your Yahoo to “No mail” and thenjust go to the site and read when you want to? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of moseleymandhotmail (DOT) co.ukwww.lymephotos.comSomeone on a forum I regularly visit said to go on this site the treatmentworks!Just thought it may help Val.Take care everyone, thanks for your help dr.grim!Ill post when I have my answer, just got to keep positive. I've got tounsubscribe as to many emails!

[Guest guest]

So what did they conclude at BART'S?Oh, stupid me, sorry forgot the salt!!No I didn't know that, thanks I may do that then, be good to come and say hi.Take care good luck! And don't give up mate :)MandySent using BlackBerry® from OrangeDate: Mon, 12 Apr 2010 15:19:56 -0600To: <hyperaldosteronism >Subject: RE: Re: Lyme research Thanks, Mandy. I couldn’t consider all that salt. Did you know you can set your Yahoo to “No mail” and then just go to the site and read when you want to? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of moseleymandhotmail (DOT) co.ukwww.lymephotos.comSomeone on a forum I regularly visit said to go on this site the treatment works!Just thought it may help Val.Take care everyone, thanks for your help dr.grim!Ill post when I have my answer, just got to keep positive. I've got to unsubscribe as to many emails!

[Guest guest]

It just says biochemically appears like pcos (but I've seen 4 endos at top hospitals saying its not and my oestrogen is low). Says waiting on cats and mets urine. He will write to my gp.He has referred me to a gastro who specialises in intestinal infections for fungal infection.I had a strong antifungal 4 years ago from a previous gp and felt amazing! After the 3 days treatment it was back!So, I don't know maybe when they try to treat the systemic infection it won't cure it so maybe I just have to jump through this hoop and then back to endocrine!Or maybe if its something like polyendocrine treating the fungus will unmask the adrenal insufficeny (if I have that, I do have those symptoms).On my way home I was very stressed, hadn't eaten as been fasting water and food and became very nauseous and very dizzy..The nurse that spoke to me said endocrine disease can take a while to diagnose but she said you definitely have endocrine problem and will be back here soon. She said sounded like addisons, possibly cushings and to just eat why body is craving rather than trying to do this diet I do.So, I have been and have a thick rash up my lower back, very cold, but pour with sweat if I walk any where, water in my legs sloshing about, thrush and very anxious nd can't sleep for the vivid dreams and anxiety.. I have written to the consltant as we agreed a week of observation and hormone tests whilst eating normally. The problem is they only tested my tsh, cortisol, thyroid etc monday morning - I was still on my diet and had been drinking caffine and smoking. They never tested those hormones again and it depended on that test as to whether they tested acth stim, aldosterone etcIf I'd of known I would have eaten a normal diet prior to the monday morning. I thought they wanted to see me on the diet and off. Also, once on the diet I can't remember things I need to say and I'm very emotional, mood swings etc...Thanks for asking. Sorry this is long..I'm complicated it seems!Hope your well Sent using BlackBerry® from OrangeDate: Tue, 13 Apr 2010 11:27:32 -0500To: <hyperaldosteronism >Subject: Re: Re: Lyme research So what did they conclude at BART'S?On Apr 13, 2010, at 1:26 AM, moseleymandhotmail (DOT) co.uk wrote:Oh, stupid me, sorry forgot the salt!!No I didn't know that, thanks I may do that then, be good to come and say hi.Take care good luck! And don't give up mate :)MandySent using BlackBerry® from OrangeDate: Mon, 12 Apr 2010 15:19:56 -0600To: <hyperaldosteronism >Subject: RE: Re: Lyme research Thanks, Mandy. I couldn’t consider all that salt. Did you know you can set your Yahoo to “No mail” and then just go to the site and read when you want to? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of moseleymandhotmail (DOT) co.ukwww.lymephotos.comSomeone on a forum I regularly visit said to go on this site the treatment works!Just thought it may help Val.Take care everyone, thanks for your help dr.grim!Ill post when I have my answer, just got to keep positive. I've got to unsubscribe as to many emails!