ANSWERS!!

[SOONERMOM]

This is for all you limbolanders....don't give up on finding out what is wrong with you!!  I finally had a test come back (very) positive and it was for Lyme.  My neurologist told me that "there is no Lyme in Oklahoma" and begrudgingly ordered my first test which I had run at my local lab.  When my results came back negative, I thought one more thing ruled out.

Recently when my husband started having a few of my same symptoms, I was encouraged by a few people that I met on this forum to spend the $195 for the same test through IgeneX lab in CA.  I honestly thought I was throwing away (more) money on my quest to find a diagnosis.

I don't think my GP was prepared to read my results and honestly I don't think he has done so before now.  I was unprepared because I had really been thinking MS and hadn't looked into much else.  He wants me to have a spinal tap done to rule out anything else because he thinks I could have 2 things going on--he didn't SAY MS, but he said autoimmune and then talked about the O-bands???  I hadn't seen him since October and I think I overwhelmed him with my numerous and CRAZY neurological symptoms.  He told me it was a little like CSI-haha.

He also added that my "diagnosis" (Familial Hemiplegic Migraine) from the last neuro was WAY down on his list of things he thought was wrong with me!!hehehe  A little---no a LOT of vindication for me!!

Anyway, please don't any of you give up on obtaining a diagnosis.  WHATEVER it may be.  I know each of  you has something wrong going on or you wouldn't be here on this fourm!  You have to keep believing in yourself.  I have seen over 6 different doctors and basically NONE of them got it right!!  

I am so grateful for all the advice and comfort I have received here!!!!

hugs to all,

Stacey

[Quixotic1]

Wow!  It's treatable!!!

The difference in the two tests is that the neuro probably ordered the standard ELISA test for Lyme, which is pretty useless.  Igenex runs a full Western blot and looks for O-Banding.  Also the running and interpretation of the Blot takes skill and lots of practice.

Regular labs do not have good quality control on the test often/

Lyme is characterized by a preponderance of sensory symptoms, pain, paresthesias, and joint complaints (which are unusual in MS).  True muscle weakness and spasticity are uncommon.  So there were some clues.  Did we recommend the Igenex testing?  If so, good for us, and good for you for doing it despite the grumpiness of your doc.

Now , you have to get treated, and stay with us.  I so hope this is the full explanation of your problems.

Is your doc going to send you to an ID specialist?

Quix

[SOONERMOM]

The first test was the western blot, but it just said "negative"  where the IgeneX tests actually shows your reaction to each band and shows a range of + to ++++.  I honestly don't think my GP had seen that one before.  I wish I had read up on all this before my appointment.

I have found a doctor in Missouri that specializes in Lyme.  I had asked my doctor about going to an ID and got no response.  For some reason, I don't think he has completely ruled out MS and wants me to see Neuro #4 first.  Would you recommend getting the LP now?  I am definitely getting the next MRI in May.

Do you think that the spasticity could be from the brain lesions??  This is one of the symptoms my husband started having too.  

I will definitely let you know how things go.  Thanks for all of your advice!

Stacey

[michael1028]

Good News !!!!! Good for you.
mike

[Quixotic1]

I was quoting the ILADS site and Lyme research.  Uncommon does not mean that no one has it, just that sensory complaints are far more common.

Quix

[Tabs]

Just a word of caution here Stacey:

I was diagnosed with Lyme based on an IgeneX antigen test in 2001 after nearly a year of constant neurological symptoms.  All other Lyme tests I had done, including both an ELISA and Western Blot at a very well respected university research hospital were negative prior to this.  I was put on extremely high dose antibiotics for almost a year.  I improved, but many of the symptoms I had in 2001 and some that are new have come back in full force recently, 7 years later.

I do not believe that Lyme is some sort of super bacteria unknown to modern medicine that could lie dormant and asymptomatic for that long after I was literally inundated for a year with 3 grams of antibiotic cocktail per day. I have a degree in the sciences and this strikes me as highly implausible based on what I know of bacterial biology.  I strongly suspect that I've had MS all along and that the onset of the remission phase after that first attack just happened to coincide with the antibiotic treatment.

If this is true (and I don't know for sure yet - I'm in the process of finding out) then it begs the question of how I tested hugely positive at IgeneX if I never had Lyme...  

I basically came to a realization and asked myself what's more likely, that this one lab is able to detect things that no one else in the medical community can, or that they've built a profitable business on telling sick people with strange neurological problems that they have the answer, which is invariably a positive Lyme test?  I find the latter far more likely in hindsight.

I just want to let people know what my experience was with this lab and the Lyme diagnosis when MS is also a potential explanation.  I fear this is going to be an unpopular view here, but it's definitely how I feel about it looking back - I think I was taken advantage of at a very scary time in my life and led to believe I had something I didn't.

Ryan

[Quixotic1]

Welcome to the forum.  First may I begin by hoping that you do not have MS, not only because I would not wish it on anyone, but because I would hate to think you were robbed of seven years when treatment might have slowed it's progression.  It is well-established that the DMDs are most effective in the first several years of the disease, losing their effectiveness later when inflammation is less of a factor and axonal degeneration steps up. But, your story of a year of extremely high dose antibiotics with improvement, only to have a full resurgence of symptoms years later does sound more like the relapsing remitting of something like MS.  I appreciate your CounterPoint to the views we usually hear.

I have harbored this suspicion for a while now.  Thank you for posting a view that will likely invite a barrage of outrage.  For quite a while I bought the view that only a few labs were really skilled and dedicated to this testing.  But, it has now also been my experience that people who seek this Igenex testing have invariably been "off the charts" positive.  Do I believe in corporate conspiracy?  Absolutely, but not just with traditional medicine and physicians.  I also believe that greed can invade "alternative medicine" and that LLMD is not the same as a degree in sainthood.

I also have a growing skepticism of this culture of interminable antibiotic therapy trying to chase down an elusive microbe that knows exactly when to encyst and hide from antibiotics and when to emerge to cause every symptom ever described in any neurologic disease.  Reading on the Lyme forums are stories of people "years into therapy" who continue to have long periods of "herx'ing," that magical return of symptoms that indicates the therapy is making progress as the lyme bacterium is killed.  Their descriptions sound very much like MS exacerbations.

I have often mentioned to the people that post here within their first year of improvement on antibiotics that I was  more interested in hearing how they would be doing in 10 years, given the variability of remissions in the majority of MS.  And since many antibiotics have been shown to have an anti-inflammatory effect  separate from their antibiotic effect, it does not surprise me that antibiotics might induce a remission early in the disease of MS.  However, antibiotics would not change the underlying problem of neuronal degeneration and axonal death (a process separate from inflammation)  that leads ultimately to the disability seen in MS.

Similar to this post is one we had recently about a man being cured of his asthma by a holistic herbalist and a change in diet.  To that I have to respond that I also had a miraculous cure from my severe asthma a few years ago.  I achieved this by "doing nothing."  It is called a spontaneous remission.

While I do not deny the existence of neuroborrelliosis with CNS invasion, I do not believe that particular form of Lyme is as common as is claimed by the believers.  I base this on the less fanatical of the Lyme research much of which is linked to via the ILADS site, which appears to be the scientific spokes site for the Lyme movement.  

At this point someone always points out the traditional reluctance of the American Medical Establishment to accept new  thoughts and new discoveries.  This is true, and I can tell more stories about this reluctance than the few that are always brought up by Lyme believers.

HOWEVER, because the rest of the world is NOT under the thumb of American pharmaceutical companies, the research done in Europe, Canada, Japan, Australia, and elsewhere ultimately cannot be denied.  The American denial of science that has been proven true in the rest of the world is not without end.  The AMA typically comes around in controversies like this within 7 to 10 years from the sheer pressure of the information from the rest of the world.  The Lyme controversy is well beyond a decade old, and the data is no more compelling now, in my opinion.  

I have not yet made up my mind exactly where I stand, because I have seen data demonstrating that NeuroLyme with CNS Invasion is indeed a common mimic of MS.  My problem is with the point that you make best.  How reliable is TBI (Tick Borne Illness) testing and why are there only a few labs in the US where you can reliably be diagnosed?  That doesn't not fit with the usual pattern of American capitalism.  If a lab test is truly useful and you can get a couple handred dollars for it, we should have a good lab at every academic microbiology lab in the US.

Ideally we would see Infectious Disease Specialists working with Neurologists to treat both entities when the diagnosis cannot be distinguished.  This brings up the big controversy between the conventional Infectious Disease groups and the LLMD's as to length of time to treat.  That remains unresolved.

Do you still have brain lesions?  Has your MRI changed since treatment?  Did the LLMD ever do an MRI or LP?  Would you mind filling in some of the details of what has happened after you were pronounced cured?

I hope you keep us abreast of your progress and your newest search for answers.

This will, as you predicit, bring a lot of comment.  It is always interesting.

Quix