RE: Re: Anyone near NJ?

[Guest guest]

Warren county...NJ

________________________________

To: " mscured " <mscured >

Sent: Monday, September 26, 2011 6:59 AM

Subject: Re: Anyone near NJ?

 

Monmouth County, NJ ................you?

 

Mike Macchiarella

[Guest guest]

I am so sorry that so many have to deal with such horrible doctors. I know that

we have had our share of bad doctors but our current neuro is fantastic. He is

open to any and all treatments whether they are mainline or not. He has re-run

every test done at a supposed top of the line hospital because he has no faith

in the care we got here in Virginia. He knows that it would be better for this

to not be MS and has worked hard to prove it is actually not MS. His first

thought was that it was something mimicking MS. He actually listed a long list

of other diseases that could and do mimick MS and tested my husband for each and

every one of them. He is not quick to jump up and put one on meds to just treat

a symptom. He will give us all the facts and all the possible treatments and we

make the choices. When my husband had the second relapse he was very willing to

help us get a power wheel chair as the second attack happened in the spine and

has made walking

harder and harder.

We asked about going on steriods for a short period of time and he agreed that

while it's not always the best thing it isn't against the rules. He says that

it's a very personal illness and one that has to be fine tuned and a coustome

treament plan has to be made for each person. He to us to not get frustrated if

it takes a bit to get it all worked out we would get there and he would stick by

us. We drive 9 hours one way to see him and won't risk changing Neuros as we

feel he is perfect for us. He listens and understands what this conditions does

to not only the patient but the whole family.

Please understand that there are doctors out there that do get it and do

understand that diet and non traditional means and methods can and do work. BTW

I have seen him for other medical issues (including possibly ms diagnosis on me)

for over 3 years. He really is a very good cautious doctor and makes sure that

he covers all basis. His partern on the other hand forget it. I won't see him

even in the case of an emergency!

Hugs

Donna in VA

  From: RandyW randy.wiseman@...

>To: mscured

>Sent: Thursday, October 6, 2011 11:56 AM

>Subject: Re: Anyone near NJ?rul

>

>

> 

>

>

>I agree 100%. Completely my story too.

>

>I personally traveled to the oracle in MN, aka Mayo Clinic, and they were very

happy and content to try to treat the symptoms. They didn't once think to ask

what has caused the problem.

>

>Turns out, a few years later, I learned I had been living with Lyme Disease.

>Rand

>

>

>

[Guest guest]

Hi Mike,

Thanks for posting this. I'm wondering if I might have MS *and* Lyme

disease. I was tested by my neuro for Lyme, but it was probably an FDA

approved test. Which test(s) do you recommend?

Also, do you have any lesions? I have a moderate lesion load, so my MS

diagnosis is definitely correct.

Thanks,

Larry

On Mon, Oct 24, 2011 at 9:00 AM, Mike Macchiarella

wrote:

> **

>

>

> It's always of interest to me to see other peoples takes on a particular

> topic when they're objective in their remarks. I can appreciate the sense of

> security you feel in regard to your nuero. I'd suggest that you look

> carefully at the labs that were used where your nuero had your tests

> completed.

> I've commented very extensively on the absolute blunder of a job that my

> old nuero did in misdiagnosing me with MS 5yrs ago (in Va btw)....it took me

> 5yrs to figure out on my own through trial and error in alternative and

> traditional MS meds and MS therepies that I actually have Lyme Disease. I

> had several different Lyme tests performed Western Blot, PCR, & that

> all came back neg. MDL is a good lab and they flat out missed it. It wasn't

> until I came across my Lyme Literate MD here in NJ and had a routine blood

> draw that came back positive for Lyme Disease.

> I'm not gonna preach on this. What I will stress is the importance of being

> 1000% sure your Lyme tests were performed at a lab that does NOT use an FDA

> approved Western Blot or any FDA approved Lyme testing methods. It may have

> saved my life. My Lyme was detected by IgeneX labs..... I also lived in Va

> and that's where I got the Lyme Disease. I also feel that the likelyhood

> both you and your husband may have MS is not nearly as likely that you both

> may have Lyme Disease.

> Just google Lyme disease misdiagnosed as MS and you'll see for yourself. As

> for your nurero all I can wish for you is that if you have already been

> tested for Lyme which I assume you were, it came back neg. If it was an FDA

> approved Lyme testing method than it sounds like he'd be willing to retest

> you through a lab that is NOT like IgeneX. If he's not, than find an MD who

> is. We all owe it to ourselves to be sure. Happy hunting.

>

> -M

>

>

>

[Guest guest]

Larry,

Igenex is one of the more reputable labs for the Lyme test. You can call them

and they will send you the test kit. The blood has to be drawn on certain days

of the week. I have lesions on two brain MRI's that I have had done. Lyme

bacteria can cause lesions and present with symptoms that most regular nueros

will diagnose as MS. I have been sick for five years and was diagnosed with MS

and recently in June of this year diagnosed with Lyme disease with a positive

Igenex test.

Best,

Sent from my iPad

[Guest guest]

Actually They thought I had MS when we lived in OH. I got tested for Rocky

mountain spotted tick fever in SC when our small dog contracted it and almost

died. The testing that happened happened in VA, MD and SC. Hopkins actually

tested brain matter from the actual sclerosis from my husbands brain. It was a

very rough time. For me it turns out I have servere Migrains that really don't

end. I don't have MS. Just some of the symptoms of it as they are some of the

same as those of servere migrains. It's all very scary. Three different labs

have done the testing on dh and I am sure that this is MS as the sclerosis has

now occured in both the brain and spinal cord. There have been biopsy's done.

I hope that you are doing well and wish you will

take care

Donna in Va

>To: mscured

>Sent: Monday, October 24, 2011 9:00 AM

>Subject: Re: Anyone near NJ?

>

>

> 

>It's always of interest to me to see other peoples takes on a particular topic

when they're objective in their remarks. I can appreciate the sense of security

you feel in regard to your nuero. I'd suggest that you look carefully at the

labs that were used where your nuero had your tests completed.

>I've commented very extensively on the absolute blunder of a job that my old

nuero did in misdiagnosing me with MS 5yrs ago (in Va btw)....it took me 5yrs to

figure out on my own through trial and error in alternative and traditional MS

meds and MS therepies that I actually have Lyme Disease. I had several different

Lyme tests performed Western Blot, PCR, & that all came back neg. MDL is a

good lab and they flat out missed it. It wasn't until I came across my Lyme

Literate MD here in NJ and had a routine blood draw that came back positive for

Lyme Disease.

>I'm not gonna preach on this. What I will stress is the importance of being

1000% sure your Lyme tests were performed at a lab that does NOT use an FDA

approved Western Blot or any FDA approved Lyme testing methods. It may have

saved my life. My Lyme was detected by IgeneX labs..... I also lived in Va and

that's where I got the Lyme Disease. I also feel that the likelyhood both you

and your husband may have MS is not nearly as likely that you both may have Lyme

Disease.

>Just google Lyme disease misdiagnosed as MS and you'll see for yourself. As for

your nurero all I can wish for you is that if you have already been tested for

Lyme which I assume you were, it came back neg. If it was an FDA approved Lyme

testing method than it sounds like he'd be willing to retest you through a lab

that is NOT like IgeneX. If he's not, than find an MD who is. We all owe it to

ourselves to be sure. Happy hunting.

>

>-M

>

>

[Guest guest]

Maybe " MS " per se doesn't exist. For some it is Lyme disease, for others heavy

metal toxicity, CCSVI and a myriad of other things that neuros like to clump

together and call MS for want of further investigation. In time " MS " may be

understood but at the moment they don't really even know what it is.

BBD is the Best Bet Diet which eliminates gluten, dairy and legumes. It is

believed that these are all bad for " MS " . More can be read in either MSRC's

website or Direct MS. The science behind it is thin, especially if it turns out

that " MS " isn't an auto-immune disease. But it has helped me over the past 5

years and I am still BBD although I've had CCSVI treatment. Maybe it has helped

me so much because I have food allergies to many of the foods it is recommended

not to eat. Whatever, it is a healthy way of eating, very similar to the Paleo

Diet.

EAPhttp://health-science-spirit.com/EAP.html Janet

To: mscured

From: randy.wiseman@...

Date: Tue, 25 Oct 2011 09:55:22 -0500

Subject: Re: Anyone near NJ?

I wonder why some try to make 1 condition into 2?

Are _chronic LD_ and _MS_ really two distinct diseases?

I contend that MS is a symptom of chronic LD, so the answer is No.

Just two names for the same thing.

Lastly, what are BBD and EAP?

And how do you expect to improve physically, i.e., what measures are you

taking?

Randy

mmacchiarella@... said:

The other thing is that Lyme can bring on MS. I may have *both* Lyme and

MS too. All I can do is continue to follow BBD (I'm not 100% BBD these

days as I used to be), continue taking my Calcium EAP, and believe that

all the physical damage is being caused by Chronic Lyme Disease (not MS)

and it WILL improve.

[Guest guest]

Thanks Mike. And thanks to everyone who responded to my question. For the

record, though, I didn't ask about BBD and EAP. I am familiar with the BBD

(from the MS-Diet group), but I'd like to hear more about EAP, as I wasn't

familiar with that.

My question was about MS & Lyme disease. Based on what I learned from the

responses I'm going to look into the Lyme Disease possibility some more. But

if it *is* LD, then how is the conventional treatment (a.k.a. drugs)

different? Non-conventional (e.g. diet) treatment? A quick google search

showed hits for an " anti-inflammation " diet for LD.

Thanks!

Larry

On Wed, Oct 26, 2011 at 7:05 AM, Mike Macchiarella

wrote:

> **

>

>

> Thanks to all who posted answers to Larry's question about BBD and EAP. I

> was struck initially by the amount of healthy discussion the original post

> is still generating. Larry, I can go into more detail on EAP therepy if you

> wish but the group has answered accurately. I think it's great that you're

> sure to get a quick accurate answer in here on most issues.

>

>

> -M

>

>

>