Re: Possibly misdiagnosed with MS? me too...................

[Guest guest]

Hi ,

If you have Lyme disease, this site contains treatment information that may be

of interest to you:

http://tinyurl.com/lyme-alternatives

All the best,

Dudley Delany

http://profiles.yahoo.com/dudley_delany

[Guest guest]

-----Original Message-----

From: mscured [mailto:mscured ] On Behalf

Of

....So today I had the apt. and well lets just say that I'm finding it

extremely difficult to stay objective. After discussing my

history/symptoms he looked at me with a straight face and said " I think

you have Lymes Disease " .....my jaw dropped. ...

>>>>>>>>>>>>>

Congratulations!??..:-) Hopefully, this diagnosis will allow you to get

correct treatments to help you get better. My question to you is where

and how would you have been infected with Lyme's disease? Supposedly

this is spread by tick bites, but it seems that more people are getting

Lyme's who have never had a tick bite in their lives.

Good luck in your treatment choices!

Tom Nesler

[Guest guest]

As I said before, I consider MS strictly a descriptive diagnosis. My LLMD

refers to my condition as Lyme-induced MS.

Lyme can be treated and cured.

KC

>

> Hi all,

> So at a recent Cal EAP IV apt I was chatting with a woman who told me she had

been misdiagnosed with MS several years ago after having numbness/tinglinging in

legs/knees. She had also had some routine testing for Lymes that always came

back neg. She sought out an MD that may be considered LLMD who did furter

testing using Igenex Labs and she came back positive for the Lymes.

> Having had the same history of MS symptoms and neg results on Lymes testing

from labs (not Igenex) I got the name of the MD she used and called to get a

consult & blood draw. Now I'm not one for fate and divine intervention these

days after having had countless shattered hopes so believe you me that I'm

staying as objective as I can these days. Having said that I called his office

immediately. The first eye opener was when during the call they had a

cancellation and an appointment opened up for the very next day. Had the

cancellation not come in the 1st apt they had was August; so I took the

cancellation faster than a virgin on prom night ;o}

> So today I had the apt. and well lets just say that I'm finding it extremely

difficult to stay objective. After discussing my history/symptoms he looked at

me with a straight face and said " I think you have Lymes Disease " .....my jaw

dropped. You have to understand the gravity of that statement and its

implications and I'm not done yet. He next went on to say that since I was into

Homeopathic therepies/testing that he had a Lymes test he could do in the room

just for HaHa's. I held my left arm strait out in front of me and he said

resist as he pushed my hand down. As soon as my arm started to give he said " let

it " . So I did. With my right hand using the nail of my index finger I rested

it on a glass vial that contained a Lymes solution. Based on the movement of my

nail across the vial it signifies whether your pos or neg for Lymes. Now I

don't know if its a strain of Lymes or what's in the vial but he said " 100% of

the patients I've tested with this who test positive also test positive through

Igenex Labs for Lymes " . 100%? I tested positive.

> Objectively speaking, that one sentence raised question to my entire MS

diagnosis. I have lots of homework to do to say the least. I'm looking at all

my tests with questions. Starting with " Does anyone know how to interpret a

Spinal Tap (LP) " ? I'll have the Igenex results in 4 weeks. My Medicare only

allows a set amount of tests per visit so when I go back for my results I'll get

the second batch of blood drawn for the remaining tests. Any thoughts?

>

[Guest guest]

So KC, my hubby has the same dx Lyme-MS. How do you treat both at the same

time? Just curios...

Thanks, Bianca

Connected by DROID on Verizon Wireless

Re: Possibly misdiagnosed with MS? me

too...................

As I said before, I consider MS strictly a descriptive diagnosis. My LLMD

refers to my condition as Lyme-induced MS.

Lyme can be treated and cured.

KC

>

> Hi all,

> So at a recent Cal EAP IV apt I was chatting with a woman who told me she

had been misdiagnosed with MS several years ago after having

numbness/tinglinging in legs/knees. She had also had some routine testing

for Lymes that always came back neg. She sought out an MD that may be

considered LLMD who did furter testing using Igenex Labs and she came back

positive for the Lymes.

> Having had the same history of MS symptoms and neg results on Lymes

testing from labs (not Igenex) I got the name of the MD she used and called

to get a consult & blood draw. Now I'm not one for fate and divine

intervention these days after having had countless shattered hopes so

believe you me that I'm staying as objective as I can these days. Having

said that I called his office immediately. The first eye opener was when

during the call they had a cancellation and an appointment opened up for the

very next day. Had the cancellation not come in the 1st apt they had was

August; so I took the cancellation faster than a virgin on prom night ;o}

> So today I had the apt. and well lets just say that I'm finding it

extremely difficult to stay objective. After discussing my history/symptoms

he looked at me with a straight f

[Guest guest]

Long before the positive blood test for Lyme, I did 10 months of Rebif only to

watch my symptoms escalate, so I stopped. Severed my relationship with the

neurologist who insisted that I have a disease called MS and that MS can only be

managed as I lost more and more function, eventually withering away. Who needs

such pessimism? Not me.

My LLMD is treating the Lyme. I have been on several rounds of antibiotics and

countless supplements. My LLMD says my MS symptoms (tingly hand, hypersensitive

skin on my legs, cognitive difficulties, uneven gait, etc.) will clear once the

Lyme has been subdued.

KC

> >

> > Hi all,

> > So at a recent Cal EAP IV apt I was chatting with a woman who told me she

> had been misdiagnosed with MS several years ago after having

> numbness/tinglinging in legs/knees. She had also had some routine testing

> for Lymes that always came back neg. She sought out an MD that may be

> considered LLMD who did furter testing using Igenex Labs and she came back

> positive for the Lymes.

> > Having had the same history of MS symptoms and neg results on Lymes

> testing from labs (not Igenex) I got the name of the MD she used and called

> to get a consult & blood draw. Now I'm not one for fate and divine

> intervention these days after having had countless shattered hopes so

> believe you me that I'm staying as objective as I can these days. Having

> said that I called his office immediately. The first eye opener was when

> during the call they had a cancellation and an appointment opened up for the

> very next day. Had the cancellation not come in the 1st apt they had was

> August; so I took the cancellation faster than a virgin on prom night ;o}

> > So today I had the apt. and well lets just say that I'm finding it

> extremely difficult to stay objective. After discussing my history/symptoms

> he looked at me with a straight f

>

>

>

>

[Guest guest]

This is an excerpt from a book that was written on how to treat Lyme and there

are chapters by 13 top LLMD's-- one of them is my LLMD. He talks

about his strategies for treating Lyme in the first chapter of this book and how

sick you can be from Lyme disease. He also touches on what symptom patterns it

can present like an MS presentation or ALS.  As KC has said,  MS is a

description for a set of symptoms that varies from individual and it literally

means multiple lesions in the body and yet some neurologist will diagnose so

called MS when an individual has no lesion pattern-- interesting isn't it? 

I do have 4 lesions on the brain, some on spine and lesions on my liver and yet

because my spinal tap came back negative in 2006--I  always questioned whether

I had so called " MS. "    So, Bianca, your husband should be treated to

eradicate the Lyme bacteria and its co-infections if they are present and then

the symptoms should subside.

, it's a great feeling isn't it to know you have a disease that is

treatable and that you can and will get better. I had tears pouring down my face

when my Igenex test came back positive at the end of June. I have waited five

years to hear a name for what is wrong with me.

 

Here is the link to the chapter where , LLMD talks about his

strategies for treating Lyme Disease in patients: 

http://www.lymebook.com/steven-harris

 

Best,

 

Subject: Re: Re: Possibly misdiagnosed with MS? me

too...................

To: mscured

Date: Friday, July 8, 2011, 8:13 AM

 

So KC, my hubby has the same dx Lyme-MS. How do you treat both at the same

time? Just curios...

Thanks, Bianca

Connected by DROID on Verizon Wireless

Re: Possibly misdiagnosed with MS? me

too...................

As I said before, I consider MS strictly a descriptive diagnosis. My LLMD

refers to my condition as Lyme-induced MS.

Lyme can be treated and cured.

KC

>

> Hi all,

> So at a recent Cal EAP IV apt I was chatting with a woman who told me she

had been misdiagnosed with MS several years ago after having

numbness/tinglinging in legs/knees. She had also had some routine testing

for Lymes that always came back neg. She sought out an MD that may be

considered LLMD who did furter testing using Igenex Labs and she came back

positive for the Lymes.

> Having had the same history of MS symptoms and neg results on Lymes

testing from labs (not Igenex) I got the name of the MD she used and called

to get a consult & blood draw. Now I'm not one for fate and divine

intervention these days after having had countless shattered hopes so

believe you me that I'm staying as objective as I can these days. Having

said that I called his office immediately. The first eye opener was when

during the call they had a cancellation and an appointment opened up for the

very next day. Had the cancellation not come in the 1st apt they had was

August; so I took the cancellation faster than a virgin on prom night ;o}

> So today I had the apt. and well lets just say that I'm finding it

extremely difficult to stay objective. After discussing my history/symptoms

he looked at me with a straight f

[Guest guest]

No thoughts. Just wanted to say congratulations on your new possible diagnosis.

It certainly helps when you know what you are dealing with.Janet

To: mscured

From: mmacchiarella@...

Date: Fri, 8 Jul 2011 03:01:52 +0000

Subject: Possibly misdiagnosed with MS? me too...................

Hi all,

So at a recent Cal EAP IV apt I was chatting with a woman who told me she had

been misdiagnosed with MS several years ago after having numbness/tinglinging in

legs/knees. She had also had some routine testing for Lymes that always came

back neg. She sought out an MD that may be considered LLMD who did furter

testing using Igenex Labs and she came back positive for the Lymes.

Having had the same history of MS symptoms and neg results on Lymes testing from

labs (not Igenex) I got the name of the MD she used and called to get a consult

& blood draw. Now I'm not one for fate and divine intervention these days after

having had countless shattered hopes so believe you me that I'm staying as

objective as I can these days. Having said that I called his office

immediately. The first eye opener was when during the call they had a

cancellation and an appointment opened up for the very next day. Had the

cancellation not come in the 1st apt they had was August; so I took the

cancellation faster than a virgin on prom night ;o}

So today I had the apt. and well lets just say that I'm finding it extremely

difficult to stay objective. After discussing my history/symptoms he looked at

me with a straight face and said " I think you have Lymes Disease " .....my jaw

dropped. You have to understand the gravity of that statement and its

implications and I'm not done yet. He next went on to say that since I was into

Homeopathic therepies/testing that he had a Lymes test he could do in the room

just for HaHa's. I held my left arm strait out in front of me and he said

resist as he pushed my hand down. As soon as my arm started to give he said " let

it " . So I did. With my right hand using the nail of my index finger I rested

it on a glass vial that contained a Lymes solution. Based on the movement of my

nail across the vial it signifies whether your pos or neg for Lymes. Now I

don't know if its a strain of Lymes or what's in the vial but he said " 100% of

the patients I've tested with this who test positive also test positive through

Igenex Labs for Lymes " . 100%? I tested positive.

Objectively speaking, that one sentence raised question to my entire MS

diagnosis. I have lots of homework to do to say the least. I'm looking at all

my tests with questions. Starting with " Does anyone know how to interpret a

Spinal Tap (LP) " ? I'll have the Igenex results in 4 weeks. My Medicare only

allows a set amount of tests per visit so when I go back for my results I'll get

the second batch of blood drawn for the remaining tests. Any thoughts?

[Guest guest]

Thanks ,

It'll feel better when I get my results.............and great when I find a

cure.  Thanks for the info

Mike Macchiarella

(434)284-2843

[Guest guest]

Interestingly, I don't ever recall an instance of a bite.  I did play paintball

in the woods every weekend for several months crawling around high grass,

brush, dead wood; you name it.  So It's extremely likely I got bit and never

knew it.  I also read somewhere that mosquitos carry it.  Have you heard that?

-M

[Guest guest]

Hi just saw your question and thought I could jump in. In germany they just came

out again with a study where researchers have found the spirochete amongst other

bugs in mosquitoes, fleas, and biting flies. Makes a bunch of sense since all of

these are carriers of vector born illnesses. There are a few studies from the US

as well but no one seems to care much.... go figure...

All the best, Bianca

Connected by DROID on Verizon Wireless

Re: Possibly misdiagnosed with MS? me too...................

Interestingly, I don't ever recall an instance of a bite.  I did play

paintball in the woods every weekend for several months crawling around high

grass,

brush, dead wood; you name it.  So It's extremely likely I got bit and never

knew it.  I also read somewhere that mosquitos carry it.  Have you heard

that?

-M

[Guest guest]

Hi,

 

Yes, I heard Lyme is spread by other organisms-- not just ticks-- fleas,

mosquitoes, and I read where it is even passed through saliva and they are

saying mothers can give it to their unborn babies. Researchers are finding more

and more about it. The Turn the Corner Foundation has a lot of benefits for Lyme

research to help people affected by the disease and Open Eye productions has a

very interesting movie about the disease that is now being aired on television

on PBS and some other channels around the country. I have the schedule if

anyone is interested in when it will be on in their area. I have the DVD and

it is very interesting to watch and I guess they have added some more to the

film since it has been aired on television.

 

I agree with you Mike, I will feel much better when I see treatment starting to

work, but I have to say that when they finally came back with something positive

in my blood instead of you have MS-- we don't know what to do with you or your

have Chronic Fatigue... same thing or your depressed...... it felt like a relief

knowing at least there was a direct cause of what was wrong with me. As Dr.

states though when he talks about Lyme-- there are other deficits the

body can have .. i.e.. tooth problems, and other structural deficits that will

make Lyme attack the body more and make it harder to treat.

 

I hope for a day when all of us are better and running around getting into

trouble

 

Best,

 

 

Subject: Re: Re: Possibly misdiagnosed with MS? me

too...................

To: mscured

Date: Saturday, July 9, 2011, 3:59 PM

 

Hi just saw your question and thought I could jump in. In germany they just came

out again with a study where researchers have found the spirochete amongst other

bugs in mosquitoes, fleas, and biting flies. Makes a bunch of sense since all of

these are carriers of vector born illnesses. There are a few studies from the US

as well but no one seems to care much.... go figure...

All the best, Bianca

Connected by DROID on Verizon Wireless

Re: Possibly misdiagnosed with MS? me too...................

Interestingly, I don't ever recall an instance of a bite.  I did play

paintball in the woods every weekend for several months crawling around high

grass,

brush, dead wood; you name it.  So It's extremely likely I got bit and never

knew it.  I also read somewhere that mosquitos carry it.  Have you heard

that?

-M

[Guest guest]

Congratulations Mike. I hope this is the answer that will give you the solution

to heal. Sounds like the best thing to explain why other treatments weren't

working for you.

Zoe

>

> Results for my IgeneX Lyme/co-infections/EBVare in!

> Lyme IgM Western Blot:Positive

> All Co-infections:Neg

[Guest guest]

Zoe/all,

Thanks I hope so too.  By other treatments I will assume you mean for MS & EBV? 

Gee there have been more than I can remember. Here's what I can recall off the

cuff.

Homepathic spray 8/11-present for household dust and mold clense to soon to say

Homepathic drops & sprays/Protease & xcellzyme to clense liver/kidney/lymph/EBV

3/11-present to soon to say execpt EBV nuetralized.I've also tried many

conventional/alternative meds to nuetralize EBV to no avail.

 CCSVI 12/3/10-slight improvement in speech that corrected reflux and less than

50% blockage in both Jugulars.

Calcium EAP IV'S 3x wk + supplements 2/08-present I believe it has kept my

MS from producing active/new lesions.

BBD & gluten/refined sugar/cow dairy-free 6/10-present no physical improvements

except for people complimenting how good I look.

Prokarin 3/09-6/09 1 patch 1x day gave me diahrrea

Manuka honey 1/10-3/10 no noticeable improvements

Betaseron 1/08-2/08   I started it when my MS symptoms first began to really

bother me (in early '08).  I was on it for a month and stopped it due to how

horrible it made me feel.

Copaxone 10/06-10/07was more of a pain to do everyday for a year at a time when

my MS symptoms where inactive.

I've probably left out quite a few things so if your curious ask and it may jog

my memory cuz I've probably tried it.....

Despite all the therepies I've tried I feel I've had a black mold

toxcisity/infection as far back as early '00 and Lyme/Babesia

co-infection/parasite infection that I may have started 4+ yrs ago.  I believe

these two factors have been robbing my body of all the good nutrients I've

introduced since stating BBD and supplements.  My LLMD reinforced this theory

even though my test results came back neg for Babesia. 

     As we all know there are many causative factors for our individual

situations.  I beleive in my heart that my MS symptoms were brought on by a

combination of lifestyle/diet & toxcisity+infection.  My only wish is that the

damage that's been done isn't permanent.   

Ttys............

 

 

 

 

 

Mike Macchiarella

(434)284-2843

[Guest guest]

Have TWO MS diagnoses. Have taken prednisone, Rebif, Copaxone, and EAP. Hired

a LLMD, was diagnosed with Lyme Disease and several co infections.

It was ME, the PATIENT, that had to figure the mess out. Even once we have made

" the jump " , it's still up to the patient to figure things out.

Realized that not all physicians are equal, especially our LLMDs. Up to LLMD #3

now. Experience suggests, give a physician about 3 to 6 months, then move to the

next one. No point in being theatrical about things, we just want our health.

NONE of the Lyme tests are 100% accurate. Some of the tests are just less

inaccurate than the others.

My only constant has been a steady loss of strength :-( Have learned that my

history of prednisone and Rebif classes me as a " steroid disaster " . this

requires more that just oral antibiotics, maybe IV antibiotics. Have just

started IM antibiotics.

I sleep a lot. Feel free to send me a note to wake me up.

> >

> > Results for my IgeneX Lyme/co-infections/EBVare in!

> > Lyme IgM Western Blot:Positive

> > All Co-infections:Neg

>

[Guest guest]

Yes Mike, by other treatments I meant that I had the impression that some of the

MS treatments you have tried in the past didn't provide a lot of help...and that

a Lyme-focused treatment may help much more.

Personally I have never seen an LLMD. For all I know that could be my major

issue too.

Zoe

>

> Zoe/all,

> Thanks I hope so too.  By other treatments I will assume you mean for MS &

EBV?  Gee there have been more than

[Guest guest]

The fact that you are keeping a documented history is really great Mike. Keep

up the good work. It is a good idea for all of us.

Upon my doctor's request in 2009, I keep a running history of my exercise

routine, my daily supplements and what cures I have tried.

My younger sister has RRMS and my younger brother is scared to death about

getting MS to the point he has drastically altered his diet, but unfortunately,

still drinks socially and smokes daily.

They are both counting on me to find an MS solution for myself.

Between my strict adherence to the Swank diet combined with a Candida diet,

supplements, an exercise routine and spiritual renewal, I feel confident I am on

my way to recovery. How long it will take me is my biggest question.

Keep on. Never stop trying.

Tim

>

> Zoe/all,

> Thanks I hope so too.  By other treatments I will assume you mean for MS &

EBV?  Gee there have been more than I can remember. Here's what I can recall off

the cuff.

> Homepathic spray 8/11-present for household dust and mold clense to soon to

say

> Homepathic drops & sprays/Protease & xcellzyme to clense

liver/kidney/lymph/EBV 3/11-present to soon to say execpt EBV nuetralized.I've

also tried many conventional/alternative meds to nuetralize EBV to no avail.

>  CCSVI 12/3/10-slight improvement in speech that corrected reflux and less

than 50% blockage in both Jugulars.

> Calcium EAP IV'S 3x wk + supplements 2/08-present I believe it has kept my

MS from producing active/new lesions.

> BBD & gluten/refined sugar/cow dairy-free 6/10-present no physical

improvements except for people complimenting how good I look.

> Prokarin 3/09-6/09 1 patch 1x day gave me diahrrea

> Manuka honey 1/10-3/10 no noticeable improvements

> Betaseron 1/08-2/08   I started it when my MS symptoms first began to really

bother me (in early '08).  I was on it for a month and stopped it due to how

horrible it made me feel.

> Copaxone 10/06-10/07was more of a pain to do everyday for a year at a time

when my MS symptoms where inactive.

> I've probably left out quite a few things so if your curious ask and it may

jog my memory cuz I've probably tried it.....

> Despite all the therepies I've tried I feel I've had a black mold

toxcisity/infection as far back as early '00 and Lyme/Babesia

co-infection/parasite infection that I may have started 4+ yrs ago.  I believe

these two factors have been robbing my body of all the good nutrients I've

introduced since stating BBD and supplements.  My LLMD reinforced this theory

even though my test results came back neg for Babesia. 

>      As we all know there are many causative factors for our individual

situations.  I beleive in my heart that my MS symptoms were brought on by a

combination of lifestyle/diet & toxcisity+infection.  My only wish is that the

damage that's been done isn't permanent.   

> Ttys............

>  

>  

>  

>  

>  

>

> Mike Macchiarella

> (434)284-2843

>

>

[Guest guest]

This is the best review of treatments I have read in my 10 years of fighting my

sickness !!

Get a copy of Dr. Joe Burrascano's DVD " Healing Lyme " . If you are broke, write

me a note, and I may be able to get a copy, or at least my notes to you. Also,

check the CALDA web site as I hear his slides are there.

My history of taking prednisone and Rebif classified me as a " steroid disaster " ,

and a candidate for IV antibiotics.

Currently, just started IM antibiotics. Stopped today to see what would happen.

I'm losing strength, and looking forward to tomorrows injection.

Also taking a Lyme Tea, inspired by Buhner's book " Healing Lyme " . Write for my

exact recipe and vendors for herbs.

>

> Zoe/all,

> Thanks I hope so too.  By other treatments I will assume you mean for MS &

EBV?  Gee there have been more than I can remember. Here's what I can recall off

the cuff.

> Homepathic spray 8/11-present for household dust and mold clense to soon to

say

> Homepathic drops & sprays/Protease & xcellzyme to clense

liver/kidney/lymph/EBV 3/11-present to soon to say execpt EBV nuetralized.I've

also tried many conventional/alternative meds to nuetralize EBV to no avail.

>  CCSVI 12/3/10-slight improvement in speech that corrected reflux and less

than 50% blockage in both Jugulars.

> Calcium EAP IV'S 3x wk + supplements 2/08-present I believe it has kept my

MS from producing active/new lesions.

> BBD & gluten/refined sugar/cow dairy-free 6/10-present no physical

improvements except for people complimenting how good I look.

> Prokarin 3/09-6/09 1 patch 1x day gave me diahrrea

> Manuka honey 1/10-3/10 no noticeable improvements

> Betaseron 1/08-2/08   I started it when my MS symptoms first began to really

bother me (in early '08).  I was on it for a month and stopped it due to how

horrible it made me feel.

> Copaxone 10/06-10/07was more of a pain to do everyday for a year at a time

when my MS symptoms where inactive.

> I've probably left out quite a few things so if your curious ask and it may

jog my memory cuz I've probably tried it.....

> Despite all the therepies I've tried I feel I've had a black mold

toxcisity/infection as far back as early '00 and Lyme/Babesia

co-infection/parasite infection that I may have started 4+ yrs ago.  I believe

these two factors have been robbing my body of all the good nutrients I've

introduced since stating BBD and supplements.  My LLMD reinforced this theory

even though my test results came back neg for Babesia. 

>      As we all know there are many causative factors for our individual

situations.  I beleive in my heart that my MS symptoms were brought on by a

combination of lifestyle/diet & toxcisity+infection.  My only wish is that the

damage that's been done isn't permanent.   

> Ttys............

>  

>  

>  

>  

>  

>

> Mike Macchiarella

> (434)284-2843

>

>

[Guest guest]

Once we have taken steroids, aka prednisone, and drugs that throttle back our

immune systems, we may be classified as a " steroid disaster "

That's my story. Upgraded from 2.5 years of oral abx and just started IM

antibiotics last week.

This disease is NOTHING to mess around with. NONE of the tests are accurate.

Not all LLMDs are created equal. I reccomend giving the a 3 to 6 month try,

then reevaluate and maybe start shopping for the next LLMD. Typically the waits

are 3 to 6 months for first visit.

> >

> > Zoe/all,

> > Thanks I hope so too.  By other treatments I will assume you mean for MS &

EBV?  Gee there have been more than

>