Tory

[Quixotic1]

Hi, you asked in another thread if I was ever really tested for Lyme.  The answer is no.  My symptoms and course has been too classic for MS for me to wonder if soemthing else might be the problem.  My brain lesions are perfect in form, consistency and location for MS.  Though, Lyme disease also causes brain lesions, there are typically less characteristic.  Also, though I know Lyme now occurs everywhere, I'm still at extremely low risk.  For the last 30 years I have been a city dweller.  For 20 of those years I was married to a man who often said, "My idea of camping is when room service is late!"  Thus, our vacations were to other cities.  I wasn't within miles of tick country.  Even our pets were exclusively indoors.

I respect the possibility of Lyme being the cause for someone who has many neurological symptoms and consistently negative work up for more common disorders.  I also understand that the CDC recommendations for Lyme disease detection was intended for Public Health Surveillance - NOT for the specific diagnosis of individual patients.  the vast majority of the medical profession, including neurlogists and ID specialists still haven't gotten that message.  Pardon, I'm preaching to the choir.

I enjoy you on the site, though.  You have a dual perspective of having symptoms and diagnosis of MS, yet now with a new, improved diagnosis of Lyme.

Quix

[tory2457]

Out of respect I will answer your reply as best I can.

I am not surprised you like so many others with MS have not been tested for lyme disease; and if we are tested by the few labs that specialize in Tick Borne Diseases ( IgeneX).

This is where the medical community leaves us down. And this is either because of a great cover up or simply lack of education.

You state
"someone who has many neurological symptoms and consistently negative work up for more common disorders."

I can assume you have put me in that category.

I was diagnosed and being treated for MS for 20 years. My neurologist is Highly respected and is even on the circuit of speakers in the US...

I don't think you're implying that he misinterpreted my MRI's, and my symptoms as he prescribed Copaxone for me?

Like you, my symptoms and course have been classic to MS.

Both diseases are a clinical diagnosis. and I have been lucky enough to sit in front of a neurologist and lyme specialist. Both clinically diagnosed me. The CDC states that testing alone should not a diagnosis make.

The difference was me. I did begin an emperical treatment of antibioitcs and did have a Herxheimer reaction! My body, not a test convinced me I have a bacteria....

I can only hope to share what I have learned and then personally discovered: we with MS do not have to end up in wheelchairs, needing canes, there is a percentage of us out there that can get well.

Here is a lecture - DVD-filled with research, it was done in 2006 at the University of New Haven for the medical community
"Chronic Lyme Disease: Connection to MS- Facts behind the controversy"
http://www.newhaven.edu/unh/lyme/

I too enjoy your posts, and actually I look forward to you like me exploring the possiblity of your MS also being caused by a bacteria.

the best,
tory

[Quixotic1]

Oh, phoooey...Tory, you seemed to write as if I was being sarcastic.  I truly was not, although, as others have noted, intonation and intent on a text post can be hard to interpret.  You seem to be conveying the message "All diagnoses of MS should be backed up with good documentation that it is not Lyme Disease."  Was that it?  I will think about that.

When I stated "New and Improved" I was being absolutely literal!! and not sarcasstic or dismissive.  I smiled at the irony when I wrote that in my first post - because it is such a cliche - never thinking that it might sound mocking.  I was thinking "humorous and true (irony).  Lyme, for the most part, IS a much better (new and improved) diagnosis.  As you note, it is treatable and potentially curable, whereas MS is not.  That alone, as I think about it, is a cogent reason to include better Lyme testing in the workup of neurological disorders.  I cringed when I felt the stiffness in your reply and saw the words, "Out of respect...."  I am so sorry if I sounded in the least dismissive.

Honestly, though, I feel that in the last 30 years I have NOT been at risk for a tick bite.  I have not ventured anywhere near a (any) tick vector habitat.  But I will consider having the testing done.  I do have a question and a request for you.  Does the spinal fluid HAVE to be sent for oligoclonal bands as well?  There would be no reason for me to have another LP, and I cannot afford to pay out of of pocket.

But, keep the comments coming.  I want to see real information here.  I am not married to a party line.  I have only tried to shut one person down here.  It was someone whom I thought was actually dangerous to the health of people reading here.

I have actually read several articles which were not fringe and not filled with wild hyperbole that convinced me that chronic Lyme is real and needs a better place in the neuro workup.

Quix

[tory2457]

Quix,

I didn't take you as being sarcastic, honestly. I was hoping you wouldn't find me sarcastic in my reply. It is difficult to put feelings in words as we type.

I too would say I was low risk for this disease; I never found a tick on me nor ever had a rash. My neurologist never suggested getting tested for lyme and I never gave it a second thought.

It took a relative of mine who was recently diagnosed with MS to begin reading about Lyme disease.  I repeatedly told them to consider lyme,,,,not  MS. He of course was diagnosed and started Avonex. My family continued to read about the close association to Lyme and MS and it was this continued learning curve that led us both to get a lyme test; and both of us did test positive for lyme. We are in treatment and are improving.

As for a LP, imo it’s not a test that is used very often in diagnosing lyme. I think it’s because the spirochete turns into a cyst pretty quickly (weeks), and doesn’t show up in the spinal fluid.

It’s a clinical diagnosis, along with bands that are positive, your immune system, and eventually how you respond to a simple antibiotic.

If you consider getting tested Quix, and if there is anything I can help you with I would be happy to do so.

friends,
tory

[JonM]

Question:
I live in South Florida and have not been in the NE for decades.  I was Dx w/ MS 7 months ago.  I did get a puppy from Amarillo TX 2 years ago and that Dog had ticks then and still brings home ticks to this day.  He sleeps with me.  Is it possible that a tick from Texas or Florida could infect me with Lyme?  Also I had MS lesions on MRI and on the cerverical spin and thoriac spine, Positive CSF proteins and several og bands.  Never did a VEP.  My clinical presentations have been classic MS.  Should I consider a Lyme test?
Thanks

[tory2457]

geez, imo I think everyone should be tested for lyme....

but do I think you should be tested? sure, why not,,,,what's there to lose? but if you decide please make sure it's through a lab that specializes in Tick Borne Diseases such as IgeneX Labs. Not an ELISA, simply not reliable.

Lyme can cause lesions, O Bands, and the symptoms are similar.

I have lesions in my brain and spinal cord, numbness, tingles, optic neuritis, trigeminal neuralgia, loss of motor skills etc, over the years...and then I found out I also have lyme. So, Jon why wouldn't I think you too should get tested. Can I be so unusual?


As for blaming your poor puppy? If you need a reason --blame the dog, but ticks are everywhere, migrating birds and all that! They are now in all states, and only getting stronger. If you are sleeping with your dog with ticks,,,,well you too are warm blooded, and all a tick has to do is "jump"!

There is so much more to lyme disease,,some doctors want to begin characterizing the co-infections as there own disease!

The easiest way is to find a lyme literate doctor in your area...they will at least do the work up so you can either rule lyme in or rule lyme out.

Post this very question on lymenetdotorg and wait for others with MS to respond. They will also help you understand why "where" your tested is important and they will give you links to begin reading about lyme disease.

Becoming your own advocate is your best defense. Getting a second, third, fourth opinion is a great defense as well!

the best to you,
tory

[meikman]

I recently watched a news program about proper tick removal and symptoms of lyme disease.  The Dr on the show said that it is extremely rare for someone that has contracted lyme to show any neurological symptoms that it usually shows just as flu symptoms.  Is this true or played down.  I realize you can't always trust what you see on TV even with a news show.

[tory2457]

well, asking these very questions is always helpful.

Neurological symptoms due to lyme is something the IDSA even recognizes. I have lyme in my CNS and when in the CNS can be a chore to eradicate. The current guidelines state that 6 weeks of antibiotics is all that’s needed to kill this intracellular bug! This same group of docs  don’t recognize “chronic Lyme”. Hmm, I’m in treatment for 9 months and still have neurological symptoms,,,,although they are getting better!
My symptoms are tingles, numbness, trigeminal neuralgia, L'Hermitte's to name a few. It's not new to receive misinformation about lyme disease.

I hope his instructions for removing a tick was correct however. Simply pull the tick straight out. You don't want to burn it out or kill it...can lead to the tick "throwing up" the  bacteria!

A very good place to learn about the “other side” of thinking on Lyme disease is ilads.org. This group of doctors is committed to making us with Lyme disease healthy again.

the best,
tory

[Want to feel well!!!]

In another post I talked about my first neurologist visit yesterday, and I am feeling much better about finding an answer to what is happening to me.  This neuro (from OH) makes it his standard to have at least three Lyme tests done on a patient (who is having symptoms) because he feels the tests are unreliable.  Since I had lived in Pennsylvania (which he called Lyme country), Lyme was one of the first things we discussed.

Also, in contrast to Quix, my idea of room service is a raccoon scratching on the outside of my tent, so Lyme is a likely candidate, but that is not to say I do have it, but it is a real possibility.

I don’t know much about the actual tests, but it seems to me a more definitive test is needed.  

[tory2457]

How nice to hear that neurologists are considering Lyme disease. You mentioned 3 lyme tests. Do you know which tests? IgeneX Labs in Palo Alto CA is a lab that specializes in Tick Borne Diseases. It will be covered by your ins co, but does need to be prepaid. They send a FedX kit which you FedX back to them (no charge for this). They ask that you get your blood drawn Mon, Tues, Wed so your blood doesn't stay at a FedX warehouse over a weekend. This lab tests for all the lyme bands. and honestly, is the only test that is needed. The results along with symptoms is sufficient to diagnosis lyme disease.

As for the ELISA is just is very reliable. The testing is too insensitive,,,people with a tick bite and bulls eye rash report a negative test through ELISA!

I wish you good luck with finding out what is wrong, but I mosty cross my fingers that you are given a chance of determining if Lyme disease is part of your issue by getting a proper test.

www.lymenet.org is a great place to ask about testing and wait to see all the reasons why the right lab is so important!

the very best to you,
tory

[Momzilla]

I know it's hard to get your voice right in a post.  I don't think we're going to hear from Quix in a while, but just because she's having health problems.  I'm sure she'll be glad to know that the two of you have just been having a communication breakdown on the information highway, as they say.  (Hopefully no one says that anymore!)

We all value what each of you brings to the table here.  Yours is such a unique perspective.  You can see from Quix's response, she thinks so, too.  

Such a shame we all have to labor so hard to get what we don't want in the first place, this elusive diagnosis.  Or diagnoses, in your case.  I took a peek in the other forum, and you seem to reign over there.  You go, girl!  Information is power.  

Take care!

Chris*

[Want to feel well!!!]

I will deffinately discuss the testing you mentioned with my neurologist.  Thanks for the information and I really do appreciate it!  As soon as the neuro mentioned he wanted to continue more Lyme testing, I felt that this guy was not going to leave things unanswered.  I loved this doctor!!!  He's my new hero!!  Ahhh, good name...Super Hero Neuro!




    

[Want to feel well!!!]

Hit "Post" by accident.  I wanted to wish you well also.  

[tory2457]

Perhaps the thing to do is call igenex and have them send you the kit- for IgG and IgM testing..basic lyme test..

Inside the kit is the prescription for your doctor to sign. You need a signed prescription for this test. Igenex will not send you the test results,,,only a doctor.

There is no charge for IgeneX to mail you the kit...After having it signed find a LabCorp and have your blood drawn and send back through FedX. (again no charge to you). In about 2-3 wks IgeneX will send you an invoice-for your ins co- and that will let you know your results are in! I would then post your results on lymenet.org..

Unless your doc has IgeneX kits already in his office you need to get a kit in order to have the testing done.

[tory2457]

in the last few months I have found that neighbors, family and friends all tested positive for lyme disease...through IgeneX. Most already had a negative ELISA and they suffer from Sjogren's, RA, IBS, Fibromyalgia, Chronic Fatigue....they all are in treatment!

Understand, that a percentage of these folks including me have a negative IgeneX test: negative both IgeneX and CDC criteria.
Testing positive is almost an impossibility for those of us who have been sick more than a few months. Why? are antibodies are so clumped together that are immune systems can't recognize the bacteria..
What makes for a positive diagnosis is this: we all had lyme specific "bands" that are either positive or IND=IND means the testing saw something,,,not enough for a negative, not enought for a positive so IND means Indeterminate. If one of these bands is positive or IND along with your symptoms is a diagnosis made..
The CDC criteria states that 5 bands must be positive on the IgG and 2 on the IgM. Most of us have at least one band positve and multiple IND bands on both. Along with symptoms, we than are clinically diagnosed. I only had 4 positive bands...so I had a negative result.
It's kindof like being pregnant. You either are or you're not.
Funny, but the CDC also states that testing alone should not a diagnosis make..they state how unreliable testing is..very confusing for us sick people!!! very frustrating!

It's a combination of the above that the sickest of us are underdiagnosed. Even when tested through IgeneX...tests come back negative and an untrained doc says Negative results: No Lyme....:(

as for anyone stating that IgeneX finds all to be positive: Untrue...I just had my mother tested and she had negative bands on all bands both IgG and IgM. Clearly for her she tested negative! thankfully

the best,
tory