Re: Lumbar puncture

[Guest guest]

A spinal tap/lumbar puncture does not very often find lyme, even when

it is there in the patient. So, not good for diagnosis of lyme.

Generally done to rule out other things. If I were you, I would not

agree to or schedule this until after you see lyme specialist.

Hope you have one that is recommended by other patients. Sometimes

docs claim to be lyme experts, but are not. These names usually are

given to patients in good faith by pcps or others who really know

nothing about the subject. Needs to be one recognized by patients and

lyme organizations.

[Guest guest]

Greetings...Thanks for the input. My LLMD is Dr. J. in Hermitage, PA. I've

heard good things about him on this site, and the LDA referred his name as an

LLMD. I haven't met him yet, but he seems to be preparing me for a successful

first visit - lots of blood work, etc.

The doctor I saw today was basically seeing me as a courtesy to my PCP. He

checked me as an internist seeing a new patient, but he tried to give me some

" Lyme pointers " . When he mentioned the spinal tap as being proof positive of

Lyme, a red flag went up for me immediately. He basically told me to have my

infectious disease " specialist " do a spinal - if the results were negative, I

could basically forget about further Lyme treatment and proceed to " just treat

my symptoms " . If I still have symptoms after my 6 months of 400 mg Doxy, then,

it isn't Lyme we're dealing with, but the aftermath / damage of my previous

infection. In fact, he never specifically acknowledged that I have Lyme - he

kept saying " that whatever I had which seemed to be infecting me, the Doxy

appears to have cleared it up " . He completely dismissed my positive IgG and IgM

WB through Igenex, saying it wasn't possible for me to have both an IgG and IgM

if I was infected in 2001. These mainstream idiots think Lyme goes away with a

few non-Lyme courses of abx (my EX-PCP's had me on various abx for 10-20 days,

3-4 x yearly for " chronic sinus infections " since 2001, prior to my Lyme

diagnosis). ly, I felt worse after my visit with him - I was definitely

P---ED off afterward. I won't waste my time with anymore non-LLMD's, or whine

to the group with further tales of woe. I just feel sorry for all of the people

with Lyme who are being herded through these non-LLMD's.

The infectious disease " specialist " I'm currently seeing for Lyme doesn't even

state that I have Lyme in my medical records. He states that he isn't convinced

that I have Lyme, but he's treating me as if I do. I had a positive test for

ehrlichiosis through my current " specialist " - I'd think most " thinking " people

could deduce that if I have a tick co-infection, and I have over half of the

listed Lyme symptoms, and a few positive bands on a non-Igenex WB, plus way

positive bands for IgG and IgM on an Igenex WB, that I DO IN FACT HAVE LYME! I

feel like I'm in the Twilight Zone when I'm listening to these non-LLMD's in

person, and I realize they're in the Twilight Zone when I vent to this group.

One day at a time, and I'm definitely looking forward to my LLMD visit next

week...Tom

[ ] Re: Lumbar Puncture

A spinal tap/lumbar puncture does not very often find lyme, even when

it is there in the patient. So, not good for diagnosis of lyme.

Generally done to rule out other things. If I were you, I would not

agree to or schedule this until after you see lyme specialist.

Hope you have one that is recommended by other patients. Sometimes

docs claim to be lyme experts, but are not. These names usually are

given to patients in good faith by pcps or others who really know

nothing about the subject. Needs to be one recognized by patients and

lyme organizations.

Questions and/or comments can be directed to the list owner at

-Owner

[Guest guest]

Lyme is very hard to find in the spinal fluid

Connie, MI

[ ] Lumbar Puncture

>

> Hi Group...My LLMD appointment is next week. Prior to that, my PCP wanted

me to see a specialist doctor friend of hers, who I saw professionally

today. He suggested I ask my infectious disease specialist for a 'lumbar

puncture' (spinal tap) to see if I have any Lyme infection. Does anyone

know if a lumbar puncture is proof positive of having / not having Lyme?

(I'll hold my thoughts / comments for now). Thanks...Tom

>

>

[Guest guest]

I found this on lumbar pucture and Dr. Wakefield.

http://www.timesonline.co.uk/article/0,,2-1015822,00.html

__________________________________________________

[Guest guest]

i haven't read the article, but please people, be

extremely weary of anything that comes from brian deer

with regard to dr wakefield. the guy seems to be on a

mission to destroy him. i wonder how much he gets from

the pharma to write such articles...

claudia

--- Anita Durney <mydurney@...> wrote:

>

> I found this on lumbar pucture and Dr. Wakefield.

>

>

>

>

http://www.timesonline.co.uk/article/0,,2-1015822,00.html

>

>

> __________________________________________________

>

[Guest guest]

Wow, I didn't know that. Thanks, I will.

Anita

<claudiaayaz@...> wrote:

i haven't read the article, but please people, be

extremely weary of anything that comes from brian deer

with regard to dr wakefield. the guy seems to be on a

mission to destroy him. i wonder how much he gets from

the pharma to write such articles...

claudia

--- Anita Durney <mydurney@...> wrote:

>

> I found this on lumbar pucture and Dr. Wakefield.

>

>

>

>

http://www.timesonline.co.uk/article/0,,2-1015822,00.html

>

>

> __________________________________________________

>

[Guest guest]

In a message dated 12/14/2005 7:41:12 PM, dmunro@... writes:

>H. I'm going to be having a lumbar puncture in a month. I was

>wondering if anyone else has had this, and how did it feel?

>

>

Not sure if lumbar puncture is the same as a spinal tap, but if it is you

should just file my experience with my daughter in the back of your head. My

daughter had a spinal tap back in '89 when she was 8 years old. The doctor

never told her to lie flat on her back for an extended period of time when the

procedure was over, and she ended up with a spinal fluid leak because she

innocently got up and went to the bathroom. Unless they've improved the

procedure,

please ask you doctor if you have to lie flat for the day. Some people who

don't do this get a really bad headache, but my daughter had severe back spasms

for 48 hours. Don't mean to upset you, but make sure you have a competent

doctor, preferably a neurosurgeon do it. In my daughter's case, a resident

doctor did the procedure and although she was fine when the pain subsided, she

went through a lot for anyone, let alone a child. Good luck and check these

things out with your treating doctor.

Sue

[Guest guest]

I had one way back in 1986 when I first got sick. I didn't think it

was bad at all.

Kathy

>

> H. I'm going to be having a lumbar puncture in a month. I was

> wondering if anyone else has had this, and how did it feel?

>

> thanks

>

> Duncan

>

[Guest guest]

I have to ditto that!

Jeannie

Kathy <aiden424@...> wrote:

I had one way back in 1986 when I first got sick. I didn't think it

was bad at all.

Kathy

> H. I'm going to be having a lumbar puncture in a month. I was> wondering if

anyone else has had this, and how did it feel?> > thanks>

> Duncan

>

Lyme Disease Treatment Guidelines, Sept 2005, written by ph Burrascano,

MD can be downloaded using this link:

http://www.ilads.org/files/burrascano_0905.pdf

[Guest guest]

Thanks, I'm feeling a little less aprehensive now.

cheers

Duncan

> > H. I'm going to be having a lumbar puncture in a month. I was>

wondering if anyone else has had this, and how did it feel?> > thanks>

> > Duncan

> >

>

>

>

>

>

>

> Lyme Disease Treatment Guidelines, Sept 2005, written by ph

Burrascano,

> MD can be downloaded using this link:

> http://www.ilads.org/files/burrascano_0905.pdf

>

>

>

>

>

>

[Guest guest]

In a message dated 12/15/2005 2:27:33 AM Eastern Standard Time,

Poeticsue@... writes:

In a message dated 12/14/2005 7:41:12 PM, dmunro@... writes:

>H. I'm going to be having a lumbar puncture in a month. I was

>wondering if anyone else has had this, and how did it feel?

>

>

Not sure if lumbar puncture is the same as a spinal tap, but if it is you

should just file my experience with my daughter in the back of your head.

My

daughter had a spinal tap back in '89 when she was 8 years old. The doctor

never told her to lie flat on her back for an extended period of time when

the

procedure was over, and she ended up with a spinal fluid leak because she

innocently got up and went to the bathroom. Unless they've improved the

procedure,

please ask you doctor if you have to lie flat for the day. Some people who

don't do this get a really bad headache, but my daughter had severe back

spasms

for 48 hours. Don't mean to upset you, but make sure you have a competent

doctor, preferably a neurosurgeon do it. In my daughter's case, a resident

doctor did the procedure and although she was fine when the pain subsided,

she

went through a lot for anyone, let alone a child. Good luck and check these

things out with your treating doctor.

Sue

For more on lumbar puncture, yes it is a spinal tap, or also goes by another

name which I have now forgotten. And yes one must lie completely flat for 4

hours after the procedure. After that be prepared to be ill for about 3

days before you are again back to normal. If you don't lie flat for the first

4

hours much worse can occur as explained above.

The most terrible part of the procedure is that if you are doing this for

Lyme there is absolutely no need for this procedure to be performed. I my self

went through the procedure and was then put on IV Rocephin for 28 days and

while on the 28 day PICC line experience learned a great deal more about Lyme.

I asked my infectious disease doctor group to keep me on IV for longer than

28 days, but they say no you will be cured after 28 days. What a disgusting

and criminal behavior they practiced on me. I found a good LLMD who said

you did not need to go through the spinal tap experience--it served no good

purpose. If you are infected with Lyme and it is discovered by a competent

blood laboratory what in hell does it matter whether it is in the spinal fluid

or

not. You need treatment for Lyme and that is all there is to it. IV

Rocephin is considered the strongest treatment for Lyme, but there are many

many

others as well which have been my savior for the past 3 years.

I am 73 and 10/12 years of age and walk for one hour each day and usually

bike for 5 miles each day as well. I again experienced severe neurological

problems after the IV treatment, but have been doing very well for 2 and one

half years now. I use herbs plus prescription medicine, but could do without

the prescription medicine. One problem with any long term taking of medicine

is that one's liver can be destroyed.

I could go on and on but who would listen? Unfortunately one has to learn

for one's own self a little at a time and some people never do. We are all

very afraid and believe our doctors know best until we perhaps find out

differently. But treatment by any doctor other than one who knows Lyme is

extremely

dangerous for the patient. A person can die from like of good treatment.

My sermon for the day!'

Good luck and all my best wishes!

Sidney

[Guest guest]

it is not recomended by llmd as it cannot rule in or out lyme disease...also

they dont always find the bands there looking for...

eric

dunmunro1 <dmunro@...> wrote:

H. I'm going to be having a lumbar puncture in a month. I was

wondering if anyone else has had this, and how did it feel?

thanks

Duncan

[Guest guest]

Joan: I never had lumbar puncture. I was diagnosed 23 years ago by the neuro and then had a CT-scan and later a MRI. I figured that was three different opinions. Joan <scrappygal@...> wrote: Has anyone had a lumbar puncture recently? My new neuro has advised me to have one done and I am a bit leery about it. She said it is not painful but very uncomfortable. She wants to be sure I have MS, but I was diagnosed by another neuro 15 years ago - but

unfortunately do not have the records of my MRI taken then. I did have an MRI done 2 weeks ago and she said I have lesions on the brain and the spine, but the ones on the brain do not look like the typical MS lesions. I have been on LDN for 3 years now and CA-EAP since 1998. Perhaps that is the reason. But my legs are getting weaker and I am losing my balance. She also has advised me to start PT and has put me on baclofen, 10 mg. 3x a day. Joan

oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

I did the same CAT-MRI 25 years ago*m.s.support@... Hawthorne <wendy.hawthorne@...> wrote: Joan: I never had lumbar puncture. I was diagnosed 23 years ago by the neuro and then had a CT-scan and later a MRI. I figured that was three different opinions. Joan <scrappygal@...> wrote: Has anyone had a lumbar puncture recently? My new neuro has advised me to have one done and I am a bit leery about it. She said it is not painful but very uncomfortable. She wants

to be sure I have MS, but I was diagnosed by another neuro 15 years ago - but unfortunately do not have the records of my MRI taken then. I did have an MRI done 2 weeks ago and she said I have lesions on the brain and the spine, but the ones on the brain do not look like the typical MS lesions. I have been on LDN for 3 years now and CA-EAP since 1998. Perhaps that is the reason. But my legs are getting weaker and I am losing my balance. She also has advised me to start PT and has put me on baclofen, 10 mg. 3x a day. Joan oneSearch: Finally, mobile search that gives answers, not web links.

[Guest guest]

I had a lumbar puncture this time last year and I swore that unless it was life and death -- I would NEVER have one again!! The actual puncture was not that painful, but the recovery was terrible! I had a horrible headache for about 5 days, which included several times when I threw up because the pain was so terrible. I basically spent 5 to 6 days on my back. It's an experience I'd never want to repeat!

Just my two cents... Chrisie

5mg LDN

not diagnosed with anything yet, but I have many MS Symptoms

[low dose naltrexone] Lumbar puncture

Has anyone had a lumbar puncture recently? My new neuro has advised me to have one done and I am a bit leery about it. She said it is not painful but very uncomfortable. She wants to be sure I have MS, but I was diagnosed by another neuro 15 years ago - but unfortunately do not have the records of my MRI taken then. I did have an MRI done 2 weeks ago and she said I have lesions on the brain and the spine, but the ones on the brain do not look like the typical MS lesions. I have been on LDN for 3 years now and CA-EAP since 1998. Perhaps that is the reason. But my legs are getting weaker and I am losing my balance. She also has advised me to start PT and has put me on baclofen, 10 mg. 3x a day. Joan

[Guest guest]

5-6 days? More like 7-8 weeks for me. I ended up taking loads of

ibuprofen daily, for weeks, to control the pain, which led to a

massive hemmorage in my small intestine which I nearly died of (lost

24 pints of blood over 30 hours and hemoglobin went down to 2).

If you need it you need it, but you need to make sure its done properly.

And be careful of NSAIDS. You see them advertised on tv all the time

as if they are nothing. Fact: more people die of Gastro-intestinal

related hemorrages in the US every year brought on by NSAID use than

die of AIDS.

Something they don't tell you on those adverts!

>

> I had a lumbar puncture this time last year and I swore that unless

it was life and death -- I would NEVER have one again!! The actual

puncture was not that painful, but the recovery was terrible! I had a

horrible headache for about 5 days, which included several times when

I threw up because the pain was so terrible. I basically spent 5 to 6

days on my back. It's an experience I'd never want to repeat!

>

> Just my two cents...

>

> Chrisie

> 5mg LDN

> not diagnosed with anything yet, but I have many MS Symptoms

>

>

> [low dose naltrexone] Lumbar puncture

>

> Has anyone had a lumbar puncture recently? My new neuro has advised me

> to have one done and I am a bit leery about it. She said it is not

> painful but very uncomfortable. She wants to be sure I have MS, but I

> was diagnosed by another neuro 15 years ago - but unfortunately do not

> have the records of my MRI taken then. I did have an MRI done 2 weeks

> ago and she said I have lesions on the brain and the spine, but the

> ones on the brain do not look like the typical MS lesions. I have been

> on LDN for 3 years now and CA-EAP since 1998. Perhaps that is the

> reason. But my legs are getting weaker and I am losing my balance.

> She also has advised me to start PT and has put me on baclofen, 10 mg.

> 3x a day. Joan

>

[Guest guest]

the first hour and first day after your LP are very important. definitely be still the first hour, definitely keep your head low the first day.after that i guess it's ymmv - i drove a buddy from his LP 4 hours back to his home. difficult trip, but no lasting or prolonged effects.

the LP is important, as are MRIs, to get an idea of what you really have. chronic fatigue syndrome has many MS characteristics but different MRI, and there may be HHV 6A/B (herpes 6) virus in your spinal fluid.

if your condition is viral you DO NOT want to have your immune system suppressed!IANAD - not that kind, anyway..

[Guest guest]

Chrisie,

Did you have the

Lumbar Puncture because they suspected you have MS or for something else??

I too was

offered one at the time of my DX but quickly and loudly refused, and then my

neuro told me that it is not any more effective than the MRI scans as 100% confirming

a DX anyway.....! Doctors - can't trust them......!!!!!

Kelli (Australia)

MS DX Sep 2006

LDN 4 and hald

months

From:

Chrisie Lim [mailto:learningsuccess2003@...]

Sent: Thursday, 27 September 2007

6:56 AM

low dose naltrexone

Subject: Re: [low dose naltrexone]

Lumbar puncture

I had a lumbar puncture this time last year and I swore

that unless it was life and death -- I would NEVER have one

again!! The actual puncture was not that painful, but the recovery

was terrible! I had a horrible headache for about 5 days, which included

several times when I threw up because the pain was so terrible. I

basically spent 5 to 6 days on my back. It's an experience I'd never

want to repeat!

Just my two cents...

Chrisie

5mg LDN

not diagnosed with anything yet,

but I have many MS Symptoms

[low dose naltrexone] Lumbar puncture

Has anyone had a lumbar puncture recently? My new

neuro has advised me

to have one done and I am a bit leery about it. She said it is not

painful but very uncomfortable. She wants to be sure I have MS, but I

was diagnosed by another neuro 15 years ago - but unfortunately do not

have the records of my MRI taken then. I did have an MRI done 2 weeks

ago and she said I have lesions on the brain and the spine, but the

ones on the brain do not look like the typical MS lesions. I have been

on LDN for 3 years now and CA-EAP since 1998. Perhaps that is the

reason. But my legs are getting weaker and I am losing my balance.

She also has advised me to start PT and has put me on baclofen, 10 mg.

3x a day. Joan

[Guest guest]

if you can relax a lumbar puncture is OK the problem come when someone gets worked up or worried and then is holding themselves stiff

just think of it being a blood test but in your back not your arm

lyn

[low dose naltrexone] Lumbar puncture

Has anyone had a lumbar puncture recently? My new neuro has advised me

to have one done and I am a bit leery about it. She said it is not

painful but very uncomfortable. She wants to be sure I have MS, but I

was diagnosed by another neuro 15 years ago - but unfortunately do not

have the records of my MRI taken then. I did have an MRI done 2 weeks

ago and she said I have lesions on the brain and the spine, but the

ones on the brain do not look like the typical MS lesions. I have been

on LDN for 3 years now and CA-EAP since 1998. Perhaps that is the

reason. But my legs are getting weaker and I am losing my balance.

She also has advised me to start PT and has put me on baclofen, 10 mg.

3x a day. Joan

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[Guest guest]

you do need to lye still for quite a while after a lumbar puncture

lyn

Re: [low dose naltrexone] Lumbar puncture

I had a lumbar puncture this time last year and I swore that unless it was life and death -- I would NEVER have one again!! The actual puncture was not that painful, but the recovery was terrible! I had a horrible headache for about 5 days, which included several times when I threw up because the pain was so terrible. I basically spent 5 to 6 days on my back. It's an experience I'd never want to repeat!

Just my two cents...

Chrisie 5mg LDN

not diagnosed with anything yet, but I have many MS Symptoms

[low dose naltrexone] Lumbar puncture

Has anyone had a lumbar puncture recently? My new neuro has advised me

to have one done and I am a bit leery about it. She said it is not

painful but very uncomfortable. She wants to be sure I have MS, but I

was diagnosed by another neuro 15 years ago - but unfortunately do not

have the records of my MRI taken then. I did have an MRI done 2 weeks

ago and she said I have lesions on the brain and the spine, but the

ones on the brain do not look like the typical MS lesions. I have been

on LDN for 3 years now and CA-EAP since 1998. Perhaps that is the

reason. But my legs are getting weaker and I am losing my balance.

She also has advised me to start PT and has put me on baclofen, 10 mg.

3x a day. Joan

Get a FREE AOL Email account with unlimited storage. Plus, share and store photos and experience exclusively recorded live music Sessions from your favourite artists. Click Here for more information.

[Guest guest]

but they do say limit the taking of Ibuprofen and to take with food

I take Ibuprofen have taken 12 in a day with food and without a problem my GP told me to take 3 a day of high dose Ibuprofen as soon as he was told I had MS and more if I need for pain before LDN I was taking a lot but always with food even if just 1/2 a biscult

lyn

[low dose naltrexone] Re: Lumbar puncture

5-6 days? More like 7-8 weeks for me. I ended up taking loads of

ibuprofen daily, for weeks, to control the pain, which led to a

massive hemmorage in my small intestine which I nearly died of (lost

24 pints of blood over 30 hours and hemoglobin went down to 2).

If you need it you need it, but you need to make sure its done properly.

And be careful of NSAIDS. You see them advertised on tv all the time

as if they are nothing. Fact: more people die of Gastro-intestinal

related hemorrages in the US every year brought on by NSAID use than

die of AIDS.

Something they don't tell you on those adverts!

>

> I had a lumbar puncture this time last year and I swore that unless

it was life and death -- I would NEVER have one again!! The actual

puncture was not that painful, but the recovery was terrible! I had a

horrible headache for about 5 days, which included several times when

I threw up because the pain was so terrible. I basically spent 5 to 6

days on my back. It's an experience I'd never want to repeat!

>

> Just my two cents...

>

> Chrisie

> 5mg LDN

> not diagnosed with anything yet, but I have many MS Symptoms

>

>

> [low dose naltrexone] Lumbar puncture

>

> Has anyone had a lumbar puncture recently? My new neuro has advised me

> to have one done and I am a bit leery about it. She said it is not

> painful but very uncomfortable. She wants to be sure I have MS, but I

> was diagnosed by another neuro 15 years ago - but unfortunately do not

> have the records of my MRI taken then. I did have an MRI done 2 weeks

> ago and she said I have lesions on the brain and the spine, but the

> ones on the brain do not look like the typical MS lesions. I have been

> on LDN for 3 years now and CA-EAP since 1998. Perhaps that is the

> reason. But my legs are getting weaker and I am losing my balance.

> She also has advised me to start PT and has put me on baclofen, 10 mg.

> 3x a day. Joan

>

Get a FREE AOL Email account with unlimited storage. Plus, share and store photos and experience exclusively recorded live music Sessions from your favourite artists. Click Here for more information.

[Guest guest]

Just curious, why would they put you on baclofen? I had it for

spasticity and muscle spasms. Kim

[Guest guest]

i had lumbar puncture done last week for oligiclonal bands in csf.

if done under all aseptic conditions and by an expert it is a safe

procedure

>

> Has anyone had a lumbar puncture recently? My new neuro has

advised me

> to have one done and I am a bit leery about it. She said it is

not

> painful but very uncomfortable. She wants to be sure I have MS,

but I

> was diagnosed by another neuro 15 years ago - but unfortunately do

not

> have the records of my MRI taken then. I did have an MRI done 2

weeks

> ago and she said I have lesions on the brain and the spine, but

the

> ones on the brain do not look like the typical MS lesions. I have

been

> on LDN for 3 years now and CA-EAP since 1998. Perhaps that is the

> reason. But my legs are getting weaker and I am losing my

balance.

> She also has advised me to start PT and has put me on baclofen, 10

mg.

> 3x a day. Joan

>

[Guest guest]

Kelli,

Yes, they did suspect MS because I did/do have a lot of MS-type symptoms. However, every test they do comes back "normal." Really annoying when you know you really aren't "normal." Basically, last September over the course of a week, I lost my ability to walk and ended up in the hospital for 4 days. That's where I had the LP done. And, yes like someone else's email suggested, I know you do need to be really still afterwards but I have a really hard time being still and I probably did move too much afterward. However, I did have to go to the bathroom and I'm not sure how else to take care of that besides sitting up and being transported to the restroom. They also spent A LOT of time poking around in me to try and get the fluid out -- like probably over 45 minutes. The excessive poking could be why I was in so much pain afterward.

Fortunately, due to God's goodness and mercy to me, after having significant walking difficulty for 5 weeks and no doctor giving me any answers, I found out about LDN. Three days after beginning LDN I was walking again -- no walker, no cane, nothing. It was really nothing short of a miracle!! LDN really has been a gift from God and my own personal healing!! But no more LP's for me -- YUCK!! Chrisie

[low dose naltrexone] Lumbar puncture

Has anyone had a lumbar puncture recently? My new neuro has advised me to have one done and I am a bit leery about it. She said it is not painful but very uncomfortable. She wants to be sure I have MS, but I was diagnosed by another neuro 15 years ago - but unfortunately do not have the records of my MRI taken then. I did have an MRI done 2 weeks ago and she said I have lesions on the brain and the spine, but the ones on the brain do not look like the typical MS lesions. I have been on LDN for 3 years now and CA-EAP since 1998. Perhaps that is the reason. But my legs are getting weaker and I am losing my balance. She also has advised me to start PT and has put me on baclofen, 10 mg. 3x a day. Joan

[Guest guest]

Hi, can you tell me what DLPA stands for. thanks Kristie

Re: [low dose naltrexone] Lumbar puncture

Joan, I'm sorry to read you are losing your balance and your legsfeel weaker. Congratulations! for finding and starting LDN3 years ago, though.I read that a lumbar puncture helps diagnose infection of thecentral nervous system, so at least your new neuro seems willingto consider things other than worsening MS for your symptoms.But I don't blame you for hesitating to to have an LP.Hopefully LDN has halted your MS progression, or at least slowedit way down. If you're not taking DLPA, too, it may be time tostart. DLPA slows breakdown of endorphins, and I readthat MS folks have lower endorphin levels than almost anybody.Your feeling that LDN therapy may be partly why your brain lesionslook atypical on the MRI could be right, as a few folks on thisforum have reported that their MS brain lesions even have healedusing LDN, and surely there are interim stages. Vitamin Ehelps dissolve scar tissue, too. If you decide to supplement with it,mixed tocopherols are best.I seem to recall that thiamine (B1) and or magnesium deficiencycan contribute to loss of balance. B vitamins are best taken togetheras they work together. And your extra calcium sup (Ca-EAP) mayhave increased your need for magnesium and vitamin D3. Askyour neuro.A google search "MS vitamin D" yields some interesting articles.Low levels of D3 also can contribute to loss of balance, andaccording to Dr. Alan Gaby, you can take up to10,000iu/dayand have only good effects. http://www.digitalnaturopath.com/treat/T39849.htmlI'm with you and your neuro hoping your new symptoms are notMS worsening. I read that baclofen is variable in its effects on easingspasticity, so you just have to see. If you find other stuff helps, too,maybe you can be on baclofen only short term to get over this hump.http://en.wikipedia.org/wiki/BaclofenHave fun at PT. Think of it as working with a personal trainer. ;)Someone posted this MS website recently but in case you didn'tsave it here it is again; it looks comprehensive:http://www.msrc.co.ukBest health, JoJoan wrote:

Has anyone had a lumbar puncture recently? My new neuro has advised me to have one done and I am a bit leery about it. She said it is not painful but very uncomfortable. She wants to be sure I have MS, but I was diagnosed by another neuro 15 years ago - but unfortunately do not have the records of my MRI taken then. I did have an MRI done 2 weeks ago and she said I have lesions on the brain and the spine, but the ones on the brain do not look like the typical MS lesions. I have been on LDN for 3 years now and CA-EAP since 1998. Perhaps that is the reason. But my legs are getting weaker and I am losing my balance. She also has advised me to start PT and has put me on baclofen, 10 mg. 3x a day. Joan

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