Re: Positive Multiple Sclerosis (MS) markers in CSF?

[Guest guest]

Hi Dave

I had the spinal done when I didnt know I had Lyme. They didnt find any mylin

protien in the spinal fluid but they still were calling it MS because of my MRI

and white lesions.

MS is a diagnosis of exclusion.. they test for everything else and when they

cant find anything they slap the MS lable on you.

I found out 8 years later that it was Lyme and Bartonella.

Who is the lab to decide you dont need that test. I would report them. If you

had an rx from your doctor for it they have no authority to NOT take it. They

arent doctors.

 Carol    

________________________________

From: Dave <dave@...>

Sent: Sun, February 6, 2011 12:17:02 AM

Subject: [ ] Positive Multiple Sclerosis (MS) markers in CSF?

 

Has anyone had a lumbar puncture with Lyme/MS tests? I just

had one and there were several tests that came back with positive MS

markers. My neurologist is now pretty sure I have MS.

I have not received the lyme CSF westernblot test results. The lab had

refused to do that test until I called them and insisted that they do

it. After all, the Doc had requested it. For some reason, the folks

at the lab decided the test was not needed... But I digress...

I googled a few of the MS tests and read that they could also be

positive due to various infections.

Has anyone had a lumbar puncture and had similar results? I mean

some positive MS markers and positive lyme tests. (I've had positive blood

western blots)

[Guest guest]

Dave,

I have tested positive for both Lymes (blood tests) and MS (spinal tap). I have

done the Lymes protocol once with a doctor that was not Lymes literate and once

with a doctor that was Lymes literate. I still have neurological symptoms - my

hands/arms shake, my short term memory is very poor, and I have trouble

reasoning things out now. I can not see to the right out of either eye and when

I try to read or work on the computer, my vision is blury. I do have lesions on

my brain (near and on my optical nerve - that's what causes my eyes not be able

to see to the right). Because I still have these symptoms and because I got

verry sick taking the medication for Lymes the second time around, I'm getting

ready to try the MS protocol. I don't know what else to do.

What are your symptoms? What have you tried?

Carol is right about MS being a diagnosis of exclusion - but the same is true

for Lymes. Both diseases can have false positives. And both disease can have

similar symptoms - so both are extremely hard to diagnose. And often times, no

two doctors agree. The only choice I have left (that I haven't tried and know

about) is the MS protocol.

Fran

[Guest guest]

Hi Dave,

I was labeled as having MS as well. Went through every test, multiple times, and

received the " confirmed " MS diagnosis from multiple doctors. Fast forward to

last December after learning my older sister had contracted Lyme, and low and

behold, I have Lyme too. Doctors are fast to label us as having MS, since many

fit the criteria and since chronic lyme is not recognized. My litmus test was

starting the antibiotics and treatment for Lyme. Since then, I haven't looked

back. Doctors still think I have MS, and since I fit the " criteria " maybe I do.

Bottom line is, we all have to decide the best course of treatment for

ourselves. Leaving our fate in the hands of conventional docs will only lead to

poor health, since what we are all suffering from really doesn't exist in the

medical establishment's eyes.

Jen

>

> Hi Dave

> I had the spinal done when I didnt know I had Lyme. They didnt find any mylin

> protien in the spinal fluid but they still were calling it MS because of my

MRI

> and white lesions.

> MS is a diagnosis of exclusion.. they test for everything else and when they

> cant find anything they slap the MS lable on you.

>

> I found out 8 years later that it was Lyme and Bartonella.

>

> Who is the lab to decide you dont need that test. I would report them. If you

> had an rx from your doctor for it they have no authority to NOT take it. They

> arent doctors.

>  Carol    

>

>

>

>

> ________________________________

> From: Dave <dave@...>

>

> Sent: Sun, February 6, 2011 12:17:02 AM

> Subject: [ ] Positive Multiple Sclerosis (MS) markers in CSF?

>

>  

> Has anyone had a lumbar puncture with Lyme/MS tests? I just

> had one and there were several tests that came back with positive MS

> markers. My neurologist is now pretty sure I have MS.

>

> I have not received the lyme CSF westernblot test results. The lab had

> refused to do that test until I called them and insisted that they do

> it. After all, the Doc had requested it. For some reason, the folks

> at the lab decided the test was not needed... But I digress...

>

> I googled a few of the MS tests and read that they could also be

> positive due to various infections.

>

> Has anyone had a lumbar puncture and had similar results? I mean

> some positive MS markers and positive lyme tests. (I've had positive blood

> western blots)

>

>

>

>

>

>

>

>

[Guest guest]

just want to make sure you know, fran that it is not uncommon to get worse

on the lyme protocol, which would be the herx reaction. i was one visit away

from being dx with MS by my neuro but went and got my blood tested thru

www.igenex.com and was CDC positive!!! after 6 yrs of infection too. i

herxed really bad the first 6 months of treatments and now i am 90% better

after 2 years on oral antibiotics. i shudder to think how my health would be

had i started the MS protocol and believed my neuro. lyme can take a long

time to get under control, especially if it has been in you a long time.

some might not give treatment and adequate chance. best wishes to you all.

On Mon, Feb 7, 2011 at 10:24 AM, Fran Mellott <fjmellott@...> wrote:

>

>

> Dave,

>

> I have tested positive for both Lymes (blood tests) and MS (spinal tap). I

> have done the Lymes protocol once with a doctor that was not Lymes literate

> and once with a doctor that was Lymes literate. I still have neurological

> symptoms - my hands/arms shake, my short term memory is very poor, and I

> have trouble reasoning things out now. I can not see to the right out of

> either eye and when I try to read or work on the computer, my vision is

> blury. I do have lesions on my brain (near and on my optical nerve - that's

> what causes my eyes not be able to see to the right). Because I still have

> these symptoms and because I got verry sick taking the medication for Lymes

> the second time around, I'm getting ready to try the MS protocol. I don't

> know what else to do.

>

> What are your symptoms? What have you tried?

>

> Carol is right about MS being a diagnosis of exclusion - but the same is

> true for Lymes. Both diseases can have false positives. And both disease can

> have similar symptoms - so both are extremely hard to diagnose. And often

> times, no two doctors agree. The only choice I have left (that I haven't

> tried and know about) is the MS protocol.

>

> Fran

>

>

>

[Guest guest]

Hi Fran,

I opted not to take the MS meds. being I wasnt seeing any progression of the

disease and Im glad I didnt because I dont believe I ever had MS

 Carol    

________________________________

From: Fran Mellott <fjmellott@...>

Sent: Mon, February 7, 2011 1:24:19 PM

Subject: Re: [ ] Positive Multiple Sclerosis (MS) markers in CSF?

 

Dave,

I have tested positive for both Lymes (blood tests) and MS (spinal tap). I have

done the Lymes protocol once with a doctor that was not Lymes literate and once

with a doctor that was Lymes literate. I still have neurological symptoms - my

hands/arms shake, my short term memory is very poor, and I have trouble

reasoning things out now. I can not see to the right out of either eye and when

I try to read or work on the computer, my vision is blury. I do have lesions on

my brain (near and on my optical nerve - that's what causes my eyes not be able

to see to the right). Because I still have these symptoms and because I got

verry sick taking the medication for Lymes the second time around, I'm getting

ready to try the MS protocol. I don't know what else to do.

What are your symptoms? What have you tried?

Carol is right about MS being a diagnosis of exclusion - but the same is true

for Lymes. Both diseases can have false positives. And both disease can have

similar symptoms - so both are extremely hard to diagnose. And often times, no

two doctors agree. The only choice I have left (that I haven't tried and know

about) is the MS protocol.

Fran

[Guest guest]

I couldnt agree with you more le I didnt do the MS drugs either and

Im very glad I didnt.

 Carol    

________________________________

From: le Handy <kndplus2@...>

Sent: Mon, February 7, 2011 8:46:57 PM

Subject: Re: [ ] Positive Multiple Sclerosis (MS) markers in CSF?

just want to make sure you know, fran that it is not uncommon to get worse

on the lyme protocol, which would be the herx reaction. i was one visit away

from being dx with MS by my neuro but went and got my blood tested thru

www.igenex.com and was CDC positive!!! after 6 yrs of infection too. i

herxed really bad the first 6 months of treatments and now i am 90% better

after 2 years on oral antibiotics. i shudder to think how my health would be

had i started the MS protocol and believed my neuro. lyme can take a long

time to get under control, especially if it has been in you a long time.

some might not give treatment and adequate chance. best wishes to you all.

On Mon, Feb 7, 2011 at 10:24 AM, Fran Mellott <fjmellott@...> wrote:

>

>

> Dave,

>

> I have tested positive for both Lymes (blood tests) and MS (spinal tap). I

> have done the Lymes protocol once with a doctor that was not Lymes literate

> and once with a doctor that was Lymes literate. I still have neurological

> symptoms - my hands/arms shake, my short term memory is very poor, and I

> have trouble reasoning things out now. I can not see to the right out of

> either eye and when I try to read or work on the computer, my vision is

> blury. I do have lesions on my brain (near and on my optical nerve - that's

> what causes my eyes not be able to see to the right). Because I still have

> these symptoms and because I got verry sick taking the medication for Lymes

> the second time around, I'm getting ready to try the MS protocol. I don't

> know what else to do.

>

> What are your symptoms? What have you tried?

>

> Carol is right about MS being a diagnosis of exclusion - but the same is

> true for Lymes. Both diseases can have false positives. And both disease can

> have similar symptoms - so both are extremely hard to diagnose. And often

> times, no two doctors agree. The only choice I have left (that I haven't

> tried and know about) is the MS protocol.

>

> Fran

>

> 

>

[Guest guest]

le,

Thank you for writing.

Yes, I do know that you get a lot worse with the lymes protocol - and I did.

The problem is that I was so weak, I couldn't walk up stairs, my gall bladder

hurt terribly, and my heart palpitated every time I stood up. I was throwing up

5 out of 7 days - which made the pills hard to get and stay down. I went with

it as long as I could - and I wish I could have put up with it longer.

In my case, I was not CDC positive for Lymes (Igenex test), but several bands

showed lymes. Also, only 2 out of 3 tests on the spinal tap showed MS. Also, a

31 band test also showed Lymes and I have never had the vaccine.

My choices now seem to be 1) do nothing, 2) try the supplement version of the

Lymes protocol, or 3) try the MS protocol. The problem with the Lymes

supplemental protocol is that it has not been shown to slow, stop, or improve

neurological symptoms.

Any other ideas?

thanks for your help.

Fran

>

> >

> >

> > Dave,

> >

> > I have tested positive for both Lymes (blood tests)

> and MS (spinal tap). I

> > have done the Lymes protocol once with a doctor that

> was not Lymes literate

> > and once with a doctor that was Lymes literate. I

> still have neurological

> > symptoms - my hands/arms shake, my short term memory

> is very poor, and I

> > have trouble reasoning things out now. I can not see

> to the right out of

> > either eye and when I try to read or work on the

> computer, my vision is

> > blury. I do have lesions on my brain (near and on my

> optical nerve - that's

> > what causes my eyes not be able to see to the right).

> Because I still have

> > these symptoms and because I got verry sick taking the

> medication for Lymes

> > the second time around, I'm getting ready to try the

> MS protocol. I don't

> > know what else to do.

> >

> > What are your symptoms? What have you tried?

> >

> > Carol is right about MS being a diagnosis of exclusion

> - but the same is

> > true for Lymes. Both diseases can have false

> positives. And both disease can

> > have similar symptoms - so both are extremely hard to

> diagnose. And often

> > times, no two doctors agree. The only choice I have

> left (that I haven't

> > tried and know about) is the MS protocol.

> >

> > Fran

> >

> > 

> >

>

>

>

[Guest guest]

Carol,

 

Yes, I can understand - but I'm not sure how I can be sure what I have.

 

I think I'm to the point where I have to either do the MS protocol - or live

with the neurological problems I have for the rest of my life - and I'm not 100%

sure, but the neurlogical effects seem to be progressing.

 

Fran

 

>

>

> Dave,

>

> I have tested positive for both Lymes (blood tests) and MS (spinal tap). I

> have done the Lymes protocol once with a doctor that was not Lymes literate

> and once with a doctor that was Lymes literate. I still have neurological

> symptoms - my hands/arms shake, my short term memory is very poor, and I

> have trouble reasoning things out now. I can not see to the right out of

> either eye and when I try to read or work on the computer, my vision is

> blury. I do have lesions on my brain (near and on my optical nerve - that's

> what causes my eyes not be able to see to the right). Because I still have

> these symptoms and because I got verry sick taking the medication for Lymes

> the second time around, I'm getting ready to try the MS protocol. I don't

> know what else to do.

>

> What are your symptoms? What have you tried?

>

> Carol is right about MS being a diagnosis of exclusion - but the same is

> true for Lymes. Both diseases can have false positives. And both disease can

> have similar symptoms - so both are extremely hard to diagnose. And often

> times, no two doctors agree. The only choice I have left (that I haven't

> tried and know about) is the MS protocol.

>

> Fran

>

> 

>

[Guest guest]

Hi le,

I chose the do nothing.  I am doing ABX and Buhners natural protochol. What

type

of neuro symptoms are you having?  I also do theraputic massage and I just

started cold laser therapy. Im feeling better than I have in the last 3 years. I

also get magnesium shots weekly

 Carol    

________________________________

From: Fran Mellott <fjmellott@...>

Sent: Tue, February 8, 2011 8:58:09 AM

Subject: Re: [ ] Positive Multiple Sclerosis (MS) markers in CSF?

 

le,

Thank you for writing.

Yes, I do know that you get a lot worse with the lymes protocol - and I did. The

problem is that I was so weak, I couldn't walk up stairs, my gall bladder hurt

terribly, and my heart palpitated every time I stood up. I was throwing up 5 out

of 7 days - which made the pills hard to get and stay down. I went with it as

long as I could - and I wish I could have put up with it longer.

In my case, I was not CDC positive for Lymes (Igenex test), but several bands

showed lymes. Also, only 2 out of 3 tests on the spinal tap showed MS. Also, a

31 band test also showed Lymes and I have never had the vaccine.

My choices now seem to be 1) do nothing, 2) try the supplement version of the

Lymes protocol, or 3) try the MS protocol. The problem with the Lymes

supplemental protocol is that it has not been shown to slow, stop, or improve

neurological symptoms.

Any other ideas?

thanks for your help.

Fran

>

> >

> >

> > Dave,

> >

> > I have tested positive for both Lymes (blood tests)

> and MS (spinal tap). I

> > have done the Lymes protocol once with a doctor that

> was not Lymes literate

> > and once with a doctor that was Lymes literate. I

> still have neurological

> > symptoms - my hands/arms shake, my short term memory

> is very poor, and I

> > have trouble reasoning things out now. I can not see

> to the right out of

> > either eye and when I try to read or work on the

> computer, my vision is

> > blury. I do have lesions on my brain (near and on my

> optical nerve - that's

> > what causes my eyes not be able to see to the right).

> Because I still have

> > these symptoms and because I got verry sick taking the

> medication for Lymes

> > the second time around, I'm getting ready to try the

> MS protocol. I don't

> > know what else to do.

> >

> > What are your symptoms? What have you tried?

> >

> > Carol is right about MS being a diagnosis of exclusion

> - but the same is

> > true for Lymes. Both diseases can have false

> positives. And both disease can

> > have similar symptoms - so both are extremely hard to

> diagnose. And often

> > times, no two doctors agree. The only choice I have

> left (that I haven't

> > tried and know about) is the MS protocol.

> >

> > Fran

> >

> > 

> >

>

>

>

[Guest guest]

What symptoms do you have?  I learned to live with mine. I haven't progressed

much. Here is how I understood what happens. Lyme mimics certain diseases. Mine

and yours is more like MS.  I think what that tells us is we have a tendency

to

actually get the disease, where someone else might mimic some other disease like

ALS.

The MS meds kind of scared me and even before I knew it was Lyme , I had decided

not to take them. I was monitored over a period of 7 years without a lyme

diagnosis and the " MS " didn't progress.  I'm happy I didn't take the MS meds

as

I don't honestly know if it would have caused more harm than good.

I had lyme for 15 years before being diagnosed and I think about the meds I was

given for the anxiety, the heart palpitations , the pre med for the MVP and the

multitude of tests that were run and I want to scream at the waste of time and

money. Thankfully all the adverse reactions I had to the meds they gave me for

diseases I didn't have, didn't have a permanent or lasting effect.

 Carol    

________________________________

From: Fran Mellott <fjmellott@...>

Sent: Tue, February 8, 2011 9:01:03 AM

Subject: Re: [ ] Positive Multiple Sclerosis (MS) markers in CSF?

 

Carol,

 

Yes, I can understand - but I'm not sure how I can be sure what I have.

 

I think I'm to the point where I have to either do the MS protocol - or live

with the neurological problems I have for the rest of my life - and I'm not 100%

sure, but the neurlogical effects seem to be progressing.

 

Fran

 

>

>

> Dave,

>

> I have tested positive for both Lymes (blood tests) and MS (spinal tap). I

> have done the Lymes protocol once with a doctor that was not Lymes literate

> and once with a doctor that was Lymes literate. I still have neurological

> symptoms - my hands/arms shake, my short term memory is very poor, and I

> have trouble reasoning things out now. I can not see to the right out of

> either eye and when I try to read or work on the computer, my vision is

> blury. I do have lesions on my brain (near and on my optical nerve - that's

> what causes my eyes not be able to see to the right). Because I still have

> these symptoms and because I got verry sick taking the medication for Lymes

> the second time around, I'm getting ready to try the MS protocol. I don't

> know what else to do.

>

> What are your symptoms? What have you tried?

>

> Carol is right about MS being a diagnosis of exclusion - but the same is

> true for Lymes. Both diseases can have false positives. And both disease can

> have similar symptoms - so both are extremely hard to diagnose. And often

> times, no two doctors agree. The only choice I have left (that I haven't

> tried and know about) is the MS protocol.

>

> Fran

>

> 

>

[Guest guest]

What symptoms? Brain fog, lesions on brain/spine, numb/tingling hands

and feet, tremor, strong but short bouts of depression, RLS.

Right now I am doing both lyme treatment and MS treatment. The

copaxone I am taking seems

to be different than the other MS treatments. It is not suppose to

suppress the immune system. I can't find any dangerous side effects

linked to it.(Please let me know if you have other information or

experience!) I'm suppose to start IV roceftin soon.

I had been on oral antibiotics for over a year, stopped, and had a

relapse on the neuologic symptoms.

The other MS drugs: steroids, interferons and the new one " Glenya "

suppress the immune system. Glenya, which is a pill, seems to

be very promising for MS. However, if the MS is a wrong diagnoses,

it can be deadly. During it's trials I believe it *killed*

someone who had herpes living in their CNS.

>

> >

> >

> > Dave,

> >

> > I have tested positive for both Lymes (blood tests) and MS (spinal tap). I

> > have done the Lymes protocol once with a doctor that was not Lymes literate

> > and once with a doctor that was Lymes literate. I still have neurological

> > symptoms - my hands/arms shake, my short term memory is very poor, and I

> > have trouble reasoning things out now. I can not see to the right out of

> > either eye and when I try to read or work on the computer, my vision is

> > blury. I do have lesions on my brain (near and on my optical nerve - that's

> > what causes my eyes not be able to see to the right). Because I still have

> > these symptoms and because I got verry sick taking the medication for Lymes

> > the second time around, I'm getting ready to try the MS protocol. I don't

> > know what else to do.

> >

> > What are your symptoms? What have you tried?

> >

> > Carol is right about MS being a diagnosis of exclusion - but the same is

> > true for Lymes. Both diseases can have false positives. And both disease can

> > have similar symptoms - so both are extremely hard to diagnose. And often

> > times, no two doctors agree. The only choice I have left (that I haven't

> > tried and know about) is the MS protocol.

> >

> > Fran

> >

> > 

> >

>

>

[Guest guest]

fran,

well, from my knowledge there is the burrascano guidelines, the marshall

protocol, the buhner protocol (all herbs) the salt/c protocol, the zhang

protocol. can't think of others right now. i love the book insights into

lyme disease treatments where each chapter outlines and is written by llmds

all over the world. they tell what they test for, what herbs/meds they use,

detox, and lots more. in my opinion it is invaluable info. without having to

pay each dr. for a visit. i am in california and i see a lyme literate

naturopath and she goes very slow with me (my choice) and i take lots of

herbs and supplements to support my immune system and i detox as much as i

can. i have heard some people that have been to llmd's that don't emphasize

herbs/supps or detox but it is vital to progress. whatever you do i would

not just do nothing as that will only allow the disease(s) to take over.

would also highly suggest you at least doing herbs that help with lyme.

i am no doctor.or herbalist so get informed but i know you might want to

look into: the byron white formulas, smilax, teasel, banderol, samento,

resveratrol, chlorella, spiro by raintree,check your vit. D levels as most

with lyme are very low. also check glutathoine levels, i take liposomal

glutathoine by researched nutritionals, it helps with fatigue and brain fog.

bless you in i your decision

danielle

On Tue, Feb 8, 2011 at 5:58 AM, Fran Mellott <fjmellott@...> wrote:

>

>

> le,

>

> Thank you for writing.

>

> Yes, I do know that you get a lot worse with the lymes protocol - and I

> did. The problem is that I was so weak, I couldn't walk up stairs, my gall

> bladder hurt terribly, and my heart palpitated every time I stood up. I was

> throwing up 5 out of 7 days - which made the pills hard to get and stay

> down. I went with it as long as I could - and I wish I could have put up

> with it longer.

>

> In my case, I was not CDC positive for Lymes (Igenex test), but several

> bands showed lymes. Also, only 2 out of 3 tests on the spinal tap showed MS.

> Also, a 31 band test also showed Lymes and I have never had the vaccine.

>

> My choices now seem to be 1) do nothing, 2) try the supplement version of

> the Lymes protocol, or 3) try the MS protocol. The problem with the Lymes

> supplemental protocol is that it has not been shown to slow, stop, or

> improve neurological symptoms.

>

> Any other ideas?

>

> thanks for your help.

>

> Fran

>

>

> >

> > >

> > >

> > > Dave,

> > >

> > > I have tested positive for both Lymes (blood tests)

> > and MS (spinal tap). I

> > > have done the Lymes protocol once with a doctor that

> > was not Lymes literate

> > > and once with a doctor that was Lymes literate. I

> > still have neurological

> > > symptoms - my hands/arms shake, my short term memory

> > is very poor, and I

> > > have trouble reasoning things out now. I can not see

> > to the right out of

> > > either eye and when I try to read or work on the

> > computer, my vision is

> > > blury. I do have lesions on my brain (near and on my

> > optical nerve - that's

> > > what causes my eyes not be able to see to the right).

> > Because I still have

> > > these symptoms and because I got verry sick taking the

> > medication for Lymes

> > > the second time around, I'm getting ready to try the

> > MS protocol. I don't

> > > know what else to do.

> > >

> > > What are your symptoms? What have you tried?

> > >

> > > Carol is right about MS being a diagnosis of exclusion

> > - but the same is

> > > true for Lymes. Both diseases can have false

> > positives. And both disease can

> > > have similar symptoms - so both are extremely hard to

> > diagnose. And often

> > > times, no two doctors agree. The only choice I have

> > left (that I haven't

> > > tried and know about) is the MS protocol.

> > >

> > > Fran

>

> > >

> > >

> > >

> >

> >

> >

[Guest guest]

My ordeal started in February, 2010. I woke up one day not really feeling well.

When I got up, I kind of walked like I was drunk – staggering around and

holding onto walls as I walked. I was confused and seemed to be forgetting a

lot of things. My hands were shaking. I also couldn’t see anything to the

right. I went to my regular GP (who happens to be a regular MD, osteopath,

chiropractor and acupuncturist all in one). She sent me for a MRI of my brain.

A week later I learned I had lesions on my brain on and near the optical nerve

(what they called “white brain matter diseaseâ€). The doctor said that we

need to figure out what caused it. So she took blood to check for Lymes and

sent me to a neurologist. The neurologist wanted an EEG, an ultrasound of my

carotid arteries, and neuropsych testing. I was also sent to an opthalmologist

for the vision issue.

The blood test (run at LabCorp) showed “Lyme IgG/IgM Ab†was positive,

“Lyme Ab Interp., EIA†was positive, “Lyme Disease Ab, Quant, IgM†was

positive, “Lyme Ab IgM Interp., EIA†was positive. However, the “Lyme,

Western Blot, Serum†only showed positive on “IgG P66 Abâ€. The rest of

the bands showed negative or absent and the “Lyme IgM WB Interp.†was also

negative. The EEG and ultrasound came back normal. The neuropsych testing,

however, showed that I had trouble in several areas including working memory,

response time, abstract reasoning, etc. and classified my symptoms as

“Cognitive Disorder, Not Otherwise Specifiedâ€. They said that I met the

criteria for a disability and that a number of workplace accommodations would

have to be made if I was going to continue to work. My blood pressure also went

up, so I started on blood pressure medication. My vitamin D was low, so I

started taking 50,000 units/week.

The ophthalmologist determined that I couldn’t see over to the right from

either eye due to the lesion on my optical nerve. In order for my eyesight to

return to normal, I had to reduce the size of the lesion.

So we all agreed that I should do the Lymes protocol and I was referred to an

“Infectious Disease†doctor. I did 4 weeks on IV Rocephan – and started

to have problems the last week – but was able to hang on and finish the

course. By problems, I mean heart palpations, dizziness, and diarrhea up to 18

times a day. There may have been more side effects, but I don’t remember them

and I did not write it down. After this 4 week course of Rocephan, this doctor

claimed “I was curedâ€. I still had all my symptoms, although at this point

they are coming and going. I always say that my symptoms “ebb and flowâ€

because although the symptoms are always there – but they ebb and flow in

intensity. So sometimes, I’m hardly shaking at all – and another time, you

could tell I was shaking from 20 feet away. But I always am shaking to some

degree. She claimed that I was cured of Lymes and that the remaining symptoms

had to be “lived withâ€

so get used to it. Since my neurological symptoms were preventing me from

working, I did not take this as gospel.

My GP ran “Multiplex B. Burgdorferi†at IGeneX two weeks after I finished

the Rocephan. It came back negative. She also ran a “Lyme IgG Western

Blot†at IGeneX. The “Igenex-IGG-Result†and the CDC result was Negative.

But the “Igenex IGM Result†was positive and the CDC result was negative.

She also ran a IFA, B Burgdorferi G/M/A was “indeterminateâ€. We also did a

heavy metal testing and that came out normal, however, I did test positive for

“biotoxinsâ€. I also had another MRI of my brain done to see if the lesions

had reduced in size at all – they had not. My GP gave me a course of

Goudithone (sp?) and IV vitamins.

So I started in search of a LLMD. The only 3 LLMDs in my area charge a minimum

of $400/hr. So I delayed another month trying to ensure I needed this

treatment. My neurologist at this point, thought it would be good to do the

spinal tap – to ensure that my symptoms were not caused by sometime other than

Lymes. The spinal tap showed MS in 2 out of the 3 tests. The LLMD I chose ran

a IgM 31 kDa Epitope Test – which showed positive. This is called a Band 31

confirmation test. The only way you should test positive in this band is if

either 1) you received a Lymes disease vaccine – or 2) you had Lymes. I have

never had the vaccine, so this positive test, I was told, proved I still had an

active Lymes infection. My LLMD indicated that he would be following the

Burrascano guidelines.

I started on 3 100mg Minocyclines, 2 300 mg Ursodiol, and a battery of

supplements (approx 44 supplement pills/day) every day. He added IV Rocephan in

the beginning of August. But within 3 days, I started having trouble with the

Rocephan. This time, everytime I started the IV, I had severe burning in the

veins that the medication was going into – and my heart felt like it beating

very fast. My LLMD determined that I had a prolonged QT Interval and decided to

take me off of the Rocephen because the Rocephen can make it worse.

So then, he added 2 500 mg of Probenecid/day. Then he added 2.4 million units

of Bicillin twice a week (very painful shots). Then he added 2 500 mg

Tindamax/day. Then he took away the Bicillin (praise the Lord!) and the

Tindamax and put me on

3 300 mg Cefdinir/day. Then he added 2 500 mg Clarifthromycin ER/day.

Right about this time, my GP wanted an updated MRI scan to see if there was any

change and she wanted me to redo the neuropsych testing to see if there had been

any improvement. The MRI came back with no change at all. The neuropsych

testing showed that I had definitely not gotten better – and perhaps I was

worse in some categories.

I should also mention that all tests for co-infections have come back negative

(babesia fish, bartonella fish, etc.). I am still being treated for the

biotoxins (I’m on the second month of Cholestyramine).

So now, the LLMD I use – his health is failing. I’ve tried the Lymes

protocol for 1 year (which I know is a very short time in the road to Lymes

recovery) – but the most important thing for me to get back/better is my

brain. I have such a hard time with my neurological issues that I often can’t

find my car or I can’t remember where I’m driving too. And I can’t work

until I have improved my brain functions. But so far, absolutely nothing has

improved. I’ve been off Lymes meds for about 1 month now. My symptoms are

now 1) shaking, 2) unsteady, 3) confusion, 4) poor memory, 5) some numbness is

my hands and legs, and 6) now in addition to not being able to see to the right

– most of my vision is blurry. These symptoms still ebb and flow.

My other concern is monetary because I’m beginning to run out of money.

Does anyone know a LLMD in the northern Virginia area who charges reasonable

rates?

What do you think of the other protocols out there (other than Burrascano

protocol)? I’m very concerned that not all the medications actually get to

our brains.

Does anyone else test like I do? (Sounds like Dave and I are similar) Does

anyone have any suggestions? I’m supposed to start treatment for MS with the

logic being that Lymes treatment did not improve me at all – let’s see if MS

treatment has any effect. I won’t know if Copaxone is an option for me until

my appt. (this is the MS drug Dave mentioned).

I would go back to the Lymes treatment – but would need to change doctors to

ensure good care.

Thanks for your help and your time.

Fran

> > >

> > > >

> > > >

> > > > Dave,

> > > >

> > > > I have tested positive for both Lymes (blood

> tests)

> > > and MS (spinal tap). I

> > > > have done the Lymes protocol once with a

> doctor that

> > > was not Lymes literate

> > > > and once with a doctor that was Lymes

> literate. I

> > > still have neurological

> > > > symptoms - my hands/arms shake, my short

> term memory

> > > is very poor, and I

> > > > have trouble reasoning things out now. I can

> not see

> > > to the right out of

> > > > either eye and when I try to read or work on

> the

> > > computer, my vision is

> > > > blury. I do have lesions on my brain (near

> and on my

> > > optical nerve - that's

> > > > what causes my eyes not be able to see to

> the right).

> > > Because I still have

> > > > these symptoms and because I got verry sick

> taking the

> > > medication for Lymes

> > > > the second time around, I'm getting ready to

> try the

> > > MS protocol. I don't

> > > > know what else to do.

> > > >

> > > > What are your symptoms? What have you

> tried?

> > > >

> > > > Carol is right about MS being a diagnosis of

> exclusion

> > > - but the same is

> > > > true for Lymes. Both diseases can have

> false

> > > positives. And both disease can

> > > > have similar symptoms - so both are

> extremely hard to

> > > diagnose. And often

> > > > times, no two doctors agree. The only choice

> I have

> > > left (that I haven't

> > > > tried and know about) is the MS protocol.

> > > >

> > > > Fran

> >

> > > >

> > > >

> > > >

> > >

> > >

> > > [Non-text portions of this message have been

> removed]

> > >

> > >

> > >

> > > ------------------------------------

> >

> > >

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> > >

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> > >