Re: re MRI

August 27, 2006

Hi

A MRI wouldn't necessarily tell you anything. Here is a post from the LDN forum

from .

In regards to whether or not an MRI is accurate, I just have to share…

About a year ago, my husband and I went to a MS conference. A great local

doctor spoke basically about how we really know close to nothing about MS and

how it works and how to truly fight it. It was so refreshing to finally see a

doctor admit that! Anyway, he was heavily involved in various research

projects and shared some great insight with us. The one thing that stood out

STRONGLY was a series of MRI pictures….He had MRIs taken each month for about a

year with a couple of different patients. In one patient, there was relatively

no change during the time, but you could see a couple of lesions…they stayed

basically the same. In the other patient, it showed masses of lesions, then a

month later, those ones cleared away and nothing, then the next month lesions in

different places, etc…it was constant change. Then he explained that the first

on was someone who was fine and as the study progressed had additional problems

and exacerbations. The one who had so much chang

e going on he explained was someone who was having NO ACTIVE symptoms or any

problems with their MS in any way. Their situation stayed the same over the

course of the study! It was SHOCKING to us….I’m sure it would be to most

doctors I know, to tell you the truth! He pointed out that basically, the

brain is in constant change, MRIs can help with some things, but they are

entirely unreliable and we need a better method. So now I don’t really care

what my MRI says. It was helpful to lead to my MS diagnosis which was then

confirmed by a spinal tap, but now I just can’t believe them. I know I feel

better since I began LDN last year and I know that all other potential drugs for

MS scare the * & %)*( out of me, so I plan to stay with LDN ‘till there is a cure.

In the meantime, I get a kick out of hearing about the latest study or some new

wonder drug….I believe that each needs to find what works for them and we al

need to have hope for a cure someday. Other than that, I’m happ

y with my basically no-side-effect LDN and encourage anyone considering it to

give it a chance.

in Las Vegas

-------------- Original message --------------

Sometimes I do wish I had gone through with the MRI just so I could see

the difference also. The only thing is that since I don't have

inusrance I would not of wanted to have a new one each year to see how

well I was doing, since they cost a fortune! I could tell I was doing

well without one. I think when insurance companies start paying for

prevention instead of sickenss care, people will start zoooming back to

health. GIna

Pugh wrote:

>Allergy tests, metals tests, Lyme disease tests, blood tests ... I'm even happy

that I had MRIs because I know the de-myelinating activity hasn't gotten worse

and that what I'm doing to get healthy will have a lasting impact. I'm glad my

spine was examined by a specialtist to rule out crushed vertabre or something

else that might be causing my immobility. It has put my focus in more productive

areas. I had my amalgams removed because of mercury testing. I think the tests,

even though not always accurate, give some indication of what needs work.

>

> What type of

>test are you talking about???

>

August 27, 2006

Hi Arlene,

I realize now that it would not have been conclusive and probably sent

me on a wild goose chase looking for comfirmation, but still sometimes I

wonder what caused all my symptoms, I am pretty sure its lyme disease

and since my husband fits the criteria also it makes it even more

likely. IN the horse world we have a disease called Navicular, its in

the foot. The way they supposedly confirm it is through x-rays, the

problem is that horses that show navicular on their x-rays may never

have a problem from it. On the other hand horses could be totally lame

and its seems to be the navicular bone that is the problem but nothing

shows on x-rays. Its a very weird disease and makes it really

frustrating for vets and anyone buying a horse that shows the problem

on x-ray. It reminds me of MS except with navicular you do know the

cause of the pain if they have it.

arlizotte@... wrote:

>Hi

>A MRI wouldn't necessarily tell you anything. Here is a post from the LDN

forum from .

>

August 28, 2006

Interesting about the horse thing. Just thought I'd share the info about MRI's.

I've had some things going on with me. I'm sure you don't agree with what I'm

doing, but I'll tell you anyway. LOL

I went to an infectious disease LL (Lyme Literate) MD. I saw the doc on Aug 3.

He asked a lot of questions, looked at my mri's, said there were lots of UBO's

(unidentified bright objects). I never heard that term before, but I googled it

and found lots of interesting info, about UBO's and lyme.

Asked me about family history and things like did we have well or city water,

did I have animals, what they died from, etc.

Took several vials of blood in the office, and then gave me a kit to have Blood

and urine testing for lyme through Igenex, they are the most accurate lyme

testing lab. I sent all that in the following week, and it takes 2 weeks to get

results from them. I also did a 24-urine collection for heavy metals.

They called the following Friday and said one of the tests came back with high

titers for Q-Fever.

I don't know how the Q-fever relates to lyme, if at all. I still am waiting

for the lyme results.

I called the doctor and he told me that lyme is a spirochete and that Q-fever is

a transient cell-wall deficient organism that can invade the lungs and cause

things like walking pneumonia. which I've had many years ago. The organism can

also invade the central nervous system, the heart, the joints, muscles,etc.and

cause problems in those areas, like I have.

It's contracted from breathing the dust of infected animal's feces and placental

birthing stuff. (that's really a technical explanation, eh?) It is usually

animals like cattle, sheep and goats, but it is also carried by some domestic

animals especially cats.

I was around the farm animals only at state fairs, but I had cats when I was

young. I also read that infected animals usually don't get sick, they just pass

it to humans, who are susceptible to the disease and very few organisms are

required to cause infection in humans with compromised immune systems.

I've started antibiotics on the 15th. I'm not crazy about being on them, but I

need to get better so I can go see that new grandbaby when it arrives. It's my

first and my daughter's due Sept 19.

It seems that there are some little improvements in some symptoms. I had some

'pulsing' achiness in my left thigh. (the bad leg that doesn't move on its

own). I also woke up in the morning with my normally clawed left hand

completely straight and I could make it into a fist and straighten it out

several times. I usually have to pry it open with my right hand. This has

happened several times now. And my hip pain isn't as bad as it was. In fact

it's relatively minor. It was excruciating before.

I go back to doc on 31st to get rest of results, but they called yesterday and

said I was positive on some of the lyme tests.

So, I'll find out more on Thursday.

Be well,

Arlene