Re: easier treating Lyme while on LDN

[Guest guest]

For me, a study sample size of 1, while I was taking LDN, I kept

losing physical strength. This loss of strength was scary enough it

drove me to start the intravenous EAP therapy.

After interviewing recovering Lyme patients, I don't see any

alternative therapies. I do hear of people spending their life

savings on many " alternative " treatments like Rife machines, then

eventually end up taking antibiotics to get out of their Lyme infections.

My health was, and is, really in the crapper. I use TWO canes to get

around the house, and I have lower back pain just sitting down and

typing. Just going to the bathroom, number 1 or number 2, is a major

effort. I'm beginning to think many of these " alternative " treatments

are luxuries for the not-so-sick patients.

Heart problems are associated with Lyme. Many times an EKG is part of

the Lyme diagnosis.

Lyme is associated with MS, fibro, Alzheimer's, Parkinson's, Lupus,

chronic fatigue, and more. It's a terribly nasty complex, multiple

infection.

Hire a competent Lyme Literate Medical Doctor (LLMD) right from the

start. Look for a LLMD who has been getting patients into remission

for MANY years. Don't fret about changing docs to find one that is a

good fit.

>

> Since LDN is bringing Lyme issues to the surface in me-

> I was wondering has anyone found it easier treating their Lyme issues

> while on LDN?

>

> Also, have any Lyme people heard about this therapy?

>

> http://www.manhattanadvancedmedicine.com/lyme.htm

>

> the treatment;

>

> Bismacine, Sulfoxime, Dioxychlor??

>

> I need to get an ecocartiogram and an EKG.

> Have any Lyme people done this?

> Recently it was discovered that I have a heart Murmur and it's being

> questioned whether I have Mitro Valve Prolapse?

> How are heart issues associated with Lyme?

>

> Also, a second doctor thinks I might have Fibro and not Lyme.

>

> Do people with Fibro ever take LDN?

> If so does Fibro get worse too?

>

> I was also wondering if anyone heard of Dr Fallon over at the

> Columbia Lyme lab in NYC. He is researching long term Lyme and I am

> supposed to call and see if I can go there for memory testing and some

> brain scans. He isn't the biggest supporter of long term Lyme being

> treated with antibiotics from what I understand.. Although, they do

> treat with abx.

>

> Jodi

>

[Guest guest]

My heart murmur hasn't been heard the last several times at the docs -

I had one, but was treated for several years for 5 tick-borne

infections, including Lyme.

My original diagnosis was fibro. Not sure if I ever really had it, or

also have had it w/Lyme - hard to say. It's a lot easier for

mainstream docs to believe/say something is fibro when it's really

Lyme (very controversial, this whole chronic LYme thing).

Fallon is excellent - he knows it can be chronic, it's just that his

NIH study didn't take coinfections into consideration, and I believe

found that 10 wks IV only accounted for a moderately increased % in

improvement. He had to follow the criteria/guidelines set about by

the grant.

Sue

>.......

> Recently it was discovered that I have a heart Murmur and it's being

> questioned whether I have Mitro Valve Prolapse?

> How are heart issues associated with Lyme?

>

> Also, a second doctor thinks I might have Fibro and not Lyme.

>

> Do people with Fibro ever take LDN?

> If so does Fibro get worse too?

>

> I was also wondering if anyone heard of Dr Fallon over at the

> Columbia Lyme lab in NYC. He is researching long term Lyme and I am

> supposed to call and see if I can go there for memory testing and

some

> brain scans. He isn't the biggest supporter of long term Lyme being

> treated with antibiotics from what I understand.. Although, they do

> treat with abx.

>

> Jodi

>

[Guest guest]

Thanks Sue,

I am a patient of Dr Hoffman (he prescribed LDN for me) and

with my different symptoms he too is hesitant with the antibiotics and

wants me to see that Dr Fallon as Hoffman interviewed him a couple of

times for his radio show.

Antibiotics make me very ill and the prospect of herxing is crazy as I

don't know who will cook and shop for me (I am on a special diet) also

I cannot see myself on abx for a year with my bowel issues. This last

time I attempted abx was a nightmare.

When I first got very ill (I was a sensitive kid) but I came down with

what I am experiencing now.. which makes me question this whole

Hering's Law of Cure.. Horrible stiffness, body aches, head aches,

chronic exhaustion, shallow breathing, joint aches, memory issues and

multiple chemical sensitivity.. All smells and fumes bothered me-

made me want to faint.

I did not have insurance at the time.. so no blood tests nothing..

just saw a rheum doc that said I had Fibro and she worked with some

biochemist that prescribed many supplements.. about $2000 later I

couldn't tolerate the supplements and got even sicker.. That doc said

I had Fibro and Chronic Fatigue Syndrome.

As for now I am suspect for Lyme with 4 pos on co-infections.

But from my understanding people with chronic disease can be pos on

co-infections anyway. I am not trying to fight this idea of Lyme and

Co issues. LDN is showing me that it is very real- I just know for me

I have to approach this differently as I cannot end up in the hospital

over and over again.

Maybe since LDN is bringing the Lyme and Co issues to surface it will

be easier to treat it?

Jodi

> >.......

> > Recently it was discovered that I have a heart Murmur and it's being

> > questioned whether I have Mitro Valve Prolapse?

> > How are heart issues associated with Lyme?

> >

> > Also, a second doctor thinks I might have Fibro and not Lyme.

> >

> > Do people with Fibro ever take LDN?

> > If so does Fibro get worse too?

> >

> > I was also wondering if anyone heard of Dr Fallon over at the

> > Columbia Lyme lab in NYC. He is researching long term Lyme and I am

> > supposed to call and see if I can go there for memory testing and

> some

> > brain scans. He isn't the biggest supporter of long term Lyme being

> > treated with antibiotics from what I understand.. Although, they do

> > treat with abx.

> >

> > Jodi

> >

>

[Guest guest]

Many of us have traveled in the opposite direction. After over a decade in the hands of several top-tier LLMD's, one a former president of ILADS, I was much worse. It was then that I began to look into alternatives, and then that I began to improve.

Nothing in Lyme and co-infections is set in stone, especially with regards to treatment. As for spending lifesavings, well, LLMD's have taken pretty much all I have with no guarantee, then tossed me to the wolves, whereas the man who built my coil machine will take it back anytime, no questions answered, for a full refund.

Unfortunately, it is not as black and white as you suggest. If it were, I would be out and around now, employed, and living a good life, but this, I can assure you, is not the case. But maybe I'm a "not-so-sick-patient" after all, I am now up on my feet, after spending all of 2007 in bed, in a blacked out house, completely intolerant of light.

In a message dated 12/7/2008 4:17:03 P.M. Eastern Standard Time, alrightguy123@... writes:

For me, a study sample size of 1, while I was taking LDN, I keptlosing physical strength. This loss of strength was scary enough itdrove me to start the intravenous EAP therapy.After interviewing recovering Lyme patients, I don't see anyalternative therapies. I do hear of people spending their lifesavings on many "alternative" treatments like Rife machines, theneventually end up taking antibiotics to get out of their Lyme infections.My health was, and is, really in the crapper. I use TWO canes to getaround the house, and I have lower back pain just sitting down andtyping. Just going to the bathroom, number 1 or number 2, is a majoreffort. I'm beginning to think many of these "alternative" treatmentsare luxuries for the not-so-sick patients.Heart problems are associated with Lyme. Many times an EKG is part ofthe Lyme diagnosis.Lyme is associated with MS, fibro, Alzheimer's, Parkinson's, Lupus,chronic fatigue, and more. It's a terribly nasty complex, multipleinfection.Hire a competent Lyme Literate Medical Doctor (LLMD) right from thestart. Look for a LLMD who has been getting patients into remissionfor MANY years. Don't fret about changing docs to find one that is agood fit.>> Since LDN is bringing Lyme issues to the surface in me- > I was wondering has anyone found it easier treating their Lyme issues> while on LDN?> > Also, have any Lyme people heard about this therapy?> > http://www.manhattanadvancedmedicine.com/lyme.htm> > the treatment;> > Bismacine, Sulfoxime, Dioxychlor??> > I need to get an ecocartiogram and an EKG.> Have any Lyme people done this?> Recently it was discovered that I have a heart Murmur and it's being> questioned whether I have Mitro Valve Prolapse?> How are heart issues associated with Lyme?> > Also, a second doctor thinks I might have Fibro and not Lyme.> > Do people with Fibro ever take LDN?> If so does Fibro get worse too?> > I was also wondering if anyone heard of Dr Fallon over at the> Columbia Lyme lab in NYC. He is researching long term Lyme and I am> supposed to call and see if I can go there for memory testing and some> brain scans. He isn't the biggest supporter of long term Lyme being> treated with antibiotics from what I understand.. Although, they do> treat with abx.> > Jodi> Make your life easier with all your friends, email, and favorite sites in one place. Try it now.

[Guest guest]

Hi Jody, yes many people who have Fibro take LDN, and many successfully.