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]

Hey, there, I want you to know that my soapbox and musings were NOT aimed at you (not at all) but prompted by Ryan's comments.  This discussion will be moved to a new thread where we can discuss it and not take away from what may be your real answer to your suffering.

It is truly a fallacy for a doctor to state, "There is not Lyme "here."  Wherever "here" might be.  Wanna is right.  The critter is mobile and knows no states lines.  She is also correct that if you don't look for something your will not find it, and if you do, will likely not recognize "it."  It is more common in some places than other, but has been seen almost everywhere with new "wheres" appearing constantly, lol.  Heck, I found a case of acute Lyme disease in Nevada after checking and finding out that there "was no Lyme in Nevada."  And that test was the much ridiculed ELISA test!

Stacey, there are a couple factors, suggesting that you don't have MS and have a Mimic.  I don't remember if I ever commented on your story.  I actually don't remember much of anything anymore, it seems.  (Is it impolite and politically incorrect to say, "All you guys looks alike" after the first 100??)  Not that I don't know, respect, cherish and like you, but I no longer can remember everybody's details.  I know, garbled - but true.

Your history of joint pains and of a high number of sensory problems, then coupled with the appearance of similar symptoms in your husband BEGS for an infectious cause to be searched for!!  I am thrilled you pursued the Western blot exam for Lyme.

The Lyme bug has an affinity for the nervous system, especially the peripheral sensory nerves, along with a large number of systemic complaints, like fatigue, diffuse joint pains, muscle aches, sometimes fever, and many others.  It less commonly invades the brain and spinal cord and that is when it truly mimics MS.  I have said over and over that primary joint pain is not typical of MS.  When I say this people always jump in to say they have joint pain.  But, joint pain in MS is usually the result of abnormal posture, weakness of the trunk and limbs, and abnormal gait with inappropriate overcompensation and stress on joints.  Also plain, old, garden variety arthritis is as common in people with MS as it is in the general population.  But, MS is not associated with arthritis (redness, warmth, swelling and stiffness of the joints) nor with arthralgias (pure pain felt within the joint itself.)

On the other hand, Lyme disease, is a big attacker of joints and of the peripheral sensory muscles.  I am so glad you pursued that avenue!  Given my reservations about Igenex (especially with new information I have recieved) I would encourage you, while you are getting treatment, to be rechecked, with another Western Blot test with another lab for additional confirmation.

Now, I dearly hope that this is your one and only answer.  I also hope that you do not get swept up into the "Chronic Lyme Disease subculture and mentality."  I believe this is not a legitimate field of science, and THIS IS MY OPINION ONLY!  The problem is that I cannot tell you whether the ID Specialists view that a short course of antibiotics (2 months or less) or the Lyme Specialists ( 6 months to a few years) is correct.  Looking at the studies, I tend toward the 2 months of appropriate therapy and reevaluation of the person with repeat testing looking for evidence of the lingering presence of the bug (like finding Lyme DNA in the blood or CSF), not by checking for antibodies which may persist lifelong.

Remember that people with any health condition who are exposed to the Lyme tick bite can get the infection.  So if treatment is not particularly successful, your doctors may need to continue the search.  What I am saying is that if you do have Lyme Disease, that doesn't mean you can't also have something else.

Do not let this discussion plant doubts in your mind.  You have good reason to suspect Lyme in youself and in your husband.  If I were in your shoes, I would begin antibiotic therapy as directed by an Infectious Disease Specialist knowledgeable about Lyme, but continue to finish the basic work up.  In my mind this means have the spinal tap.  It can give valuable clues to MS, Lyme and help exclude other things.  It also includes getting a confirmation of the Western Blot at a lab that is well-respected, but not promoted by the Lyme Industry/Culture.  The Infectious Disease specialist should know where to send the specimen.

I apologize again for hijacking your thread.  Sometimes this happens, but let me assure you my comments were a reaction to Ryan's very interesting thoughts and experience and not to your news.  

Still friends? (please! please!)

Quix

[Want to feel well!!!]

Even though the risk for Lyme in OK is low (and I’m sure you understand) this does not mean it isn’t there.  According to your state’s website “Lyme disease is a reportable disease in Oklahoma.”  I work with wildlife, attend seminars presented by my state’s wildlife division, and keeping diseases from traveling over state lines is not an easy task.  Since Lyme travels by insect, it is next to impossible to stop it from crossing state lines…they tend to not carry maps in their pockets.

Also, if the notion that OK does not have Lyme and doctors are not looking for it, the reported numbers are not going to representative of the true picture.

I sincerely hope at this time you have the REAL answer and you get on to feeling better.

Best Wishes…
Wanna

[SOONERMOM]

The only other 2 people that I know that have had the IgeneX test didn't have the overwhelming  positive that I had.  One had one band positive and one had 3  bands  positive.

I am open to all discussions.  Like I have said, I want to know what I have, not just be told that I have something.

I am sure people have been treated for lyme when they didn't have it...just like people  have been treated for MS when they had something else.

I do live on acreage and have been bitten by numerous ticks and we do have all kinds of wild life.  We have only lived here for  @ 3 years.  So it isn't just out of the question that I could have lyme.  This is especially true since my husband is now having joint/muscle pain and some numbness.

Quix, I am sure that all the things that you said is what my GP is thinking.  I will definitely do all the follow up that I should.  Hey, I wouldn't be opposed to getting it retested somewhere else.  

Ryan, I hope that you don't have MS.  I hope you weren't misled and treated for something that you never had.  I appreciate your comments and will definitely do more investigation into it all.

Stacey

[sllowe]

Sooner - I'm so glad you are going to be able to start treatment for this.  I am not sure if you should skip the LP now.  It would not hurt to have your spinal fluid checked.  I think they are not completely ruling out something else.  You Dr is not convinced of this strictly being your problem.  If it were me, I would have the LP done.


Ryan - Welcome to the forum, you can bring a lot to it with your background.  Don't worry about bringing up the topic you did.  I'm sure that Stacey, and many others faced with this appreciate your post.  

You and Dr. Quix are both onto something many of us do not understand thoroughly.  Well, we don't understand several things, but namely-- why on this earth is this the only lab in town to find the tick borne illnesses?  Afterall, there has been so much progress where Lyme disease is concerned.  I remember going to the hospital back in the late 80's and there were groves of children on the floor I was on (their rooms were decorated like they lived there).  I asked, do all of these children have cancer?  The nurse said, no, Lymes Disease.  At that time, they did not have the treatment they have today - and they did basically, live there.

[spastic]

Sweetie, I am so happy to hear you finally have a diagnosis!!!  I know its been a long haul for you and you must be so relieved...  I hope the treatment goes well for you.  

Many Hugs,

Ada  

[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