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ANSWERS!!
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ANSWERS!!

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
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37 Comments Post a Comment
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Congrats on finding another clue! Vindication feels oh-so-nice.

Now, about your dh and you having similar symptoms. You now have the good/bad fortune of having a spouse who can walk in your shoes.

I don't know if congratulations really is the right thing here, but you know what I mean!

Hope you BOTH feel better soon.

Oh, and when is your LP????

Suzanne
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CSI: Lyme Division!!  Way to go!!!

Wow.  You must really feel vindicated.  SOOOO happy for you...SOOOOO happy!

Wanna
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I would like to also say congratulations on a diagnosis, Please..Please...Please look at my post and if my symptoms sound like yours,please contact me! I live in PA and somebody on another forum suggested Lyme Disease to me because PA is a Lyme Disease epidemic area, my neuro thinks it's MS and im trying to get as much feedback from anybody as i can.
RoxyDavis
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Stacey:

Like Suzanne said, I don't really feel comfy with a congrats, but.....you know what we mean....   :)   It must be 'some' relief having answers and VINDICATION!   In the same breath, it's kind of scary to me that 6 doctors got this all wrong.....WOW!

Roxy:  Welcome!  I am glad you took my advice and came over to this forum to talk to these beautiful people.....Take care
Tammy
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Hi, It is Santana,
If you don't mind telling me what were your symptoms? Did you show lesions of brain MRI and what was the results from your spinal tap? My Neuro said he tested me for Lyme, but I have read that a lot of the Lyme test  are not always correct. I would really be interested in hearing your symptoms and test results again.

Thanks
Santana8
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I started out w/pressure headaches and ringing of the ears.  I then had some migraines w/nose bleeds.  I got a numb on a small area of my face, then it spread to basically my whole left side and had symptoms all along my trigeminal nerve.  Burning, crawling, tingling, water dripping off my forehead feeling.  The tingling spread to my left side of spine and went down.    I started having more and more migraines.  I would have blood of some kind come out of my nose every day.  My left arm & leg would go numb periodically.  Then the muscle tone on mostly the left side started to be spastic and wouldn't relax.  One night it got really bad and I woke up numb all over (ALL OVER) on my left side.  I would have extreme numbness on left side of face and left arm and then lose feeling inside my throat.  Then it happened on the right side too and I lost central vision in right eye for about 3 seconds.  Sometimes, the numbness would turn to pain in my ears (stabbing) and my throat.  My feet would feel all twisted up and would vibrate.  My face would feel like flames were shooting out of it.  I guess the last thing was actually my joints were feeling "weird".  My ankles and hips would feel loose and then painful.  I would fall off of some of my shoes and started having some difficulty walking up stairs.  The more I walk, the worse I feel.  My muscles just hurt and so do my joints.  I am sure that I am leaving a few things out here--LOL

I had an MRI at almost the beginning and it showed 13 white matter lesions that did not enhance w/dye.  They are not in the "typical" place for either MS or migraine and are in the centrum semiovale in the deep white matter.  They are on both sides and fairly spread out.  I haven't had a spinal tap done, but my GP wants me to have one.  I actually had set up an appointment w/neuro #4  a while back and it is next week.  My GP said that if this neuro doesn't suggest a spinal, that I am to ASK for one.

I had a c-spine MRI and there were no lesions.  My VEP was normal.  I do have hearing loss (sensorineural).  I was tested for APS and every thing that the rheumatologist (sed. rate, ANA, etc.) could think of and it was all normal.  I just can't imagine how my first test came back negative, because the one I had through IgeneX showed 10 positive bands for antibodies to Borrelia burgdorferi. (Lyme disease  bacteria).  You wouldn't think that there would be such a difference???

best wishes to all,
Stacey
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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
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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

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

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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
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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

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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
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I really appreciate all your comments and am in no way upset at anyone!  If you have some new information about IgeneX that shows they aren't accurate, etc.  I would like to review it.  After reading Ryan's post again, I noticed that he said that he had an antigen test, which I think is an old urine test that they don't even offer any more.  I'm not sure about comparing that with a western blot for diagnosis???

I had a round of antibiotics (for a resp. infection) about 2 weeks before the "retest" w/Igenex, and heard  that could have helped my immune response to be better and therefore helped my result to be positive.???  It would be a lot more helpful if the regular Western Blot tests would show all positive responses and not just a negative/positive result.

My husband didn't have symptoms until after he started on antibiotics for the resp. infection that I passed on to him.  He actually experienced some initial numbness, then the muscle/joint problems started.

My symptoms started in October and were almost completely (sensory) neurological, until the last few months.  The joint pain is actually the most recent (weeks).  That is actually why I didn't suspect it until lately.   I have started on doxycycline and the constant headaches have lifted and I am slowly having fewer sensory problems.
I was wondering if the antibiotics will "mess up" the spinal tap.  I know it sounds weird, but I honestly want to have the spinal tap to hopefully put some things to rest.
I have wondered if the joint problems have begun because I am A LOT more active than I have been in months.

I know my GP thinks more is going on and he is very thorough. But instead of referring me to an ID, he wanted me to go to my next scheduled appointment w/ Neuro #4???  I would bet that the ID hasn't even treated lyme here.  We also have a pediatric ID and he is in the same office  w/my son's Pediatrician.  I am going to have both the local WB and IgeneX WB done on him at the same time and I will let you know about the results.

This is of course anecdotal, but I found out that our vetrinarian's wife has lyme and they live on acreage with in walking distance of us.

I didn't mean to write my whole case-study here, I am honestly still trying to grasp it all and know a lot more about MS, than I do about lyme.

I know your intention is to help people here and I imagine that you talk to us like you would talk to your sister.  I don't  take this as trying to hurt our feelings, but rather trying to give us an unbiased "straight talk" type of information/advice.  I do appreciate it and we are definitely still friends!!!

Stacey

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Good luck with all this!

Feel better!

Zilla*
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Stacey

I 'm glad you found a lyme doctor. What I have read about the lumbar puncture and what I have been told  by infectious disease and lyme doctor.... I should be off antibiotics for 30 days. My mother had a LP that came back negative for lyme even though other testing was positive. So maybe do one before you start treatment.....

The thing I try to keep in mind is that there are several tick born illnesses, the testing is unreliable and the unfortunate part is not everyone has a perfect recovery. Just like any disease no one presents the same way. You and I have simular symptoms but you have things I don't  and I have symptoms you don't and then NOBODY in the medical community agrees on the diagnosis or the treatment and there is a lot of politics.

The infectious disease doctor started his first conversation with me  informing me that no one else in his office would even see a lyme patient and then he continued to tell me that ILADS had sued IDSA and blah blah. He then told me I did not have lyme YET he prescirbed me 2 more weeks of antibiotics for "good measure"

We have a little boy in our community with lyme and he was very sick.... herxing. He had to go to the local children's Hospital ER and his family was told as they came through that they were not a lyme friendly facility.

I am not sure what my point is .... you are still in uncharted waters my friend. I have infectious disease saying  2 months antibiotics nor more no less. Then I  have a lyme doc say whatever you need for as a long as you need it ... in my opinion neither is the right answer.  Read and educate yourself about both sides of the fence. Like you my PCP thinks that I have something in addition to lyme. Only time will tell!

Is the hubby going to be tested?

My thoughts and prayers are with you. Please keep us posted

Rebeccah
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Hi, everyone!

You know, I haven't said anything here, because I didn't want Stacey to think I wasn't relieved for her diagnosis.  I think everyone here knows I'm genuine when I am thrilled at one of our members' good news.  So, Stacey, JulieBob -- If Lyme is what you are suffering with -- I hope that your treatment makes you better.  You know I do.  And anyone else who is truly suffering from Lyme.  HOWEVER....(And this is a really big BUT)

And I have been stewing this over for a while...

This Igenex thing burns me up.  

I'll tell you why.  I have been going through old emails today, deleting those that are just taking up space in my files.  Quix and I sent PLENTY months ago to each other months ago when the subject of Lyme came up on the forum.  Those of you who were part of the forum then know it was an INTERESTING topic at that time.  I say that....because it's true!

Quix and I came a little unglued.  There were people who gave us quite an education on Lyme, LLMDs, Elisa, Westrn blot, and Igenex.  It was overwhelming.  And a bit unsettling.  Now, with what Ryan is saying, I must admit, my doubts about the legitimacy of all this subspecialty has awakened.   I still believe ALL doctors are "Lyme literate."

What are others thinking?

Zilla*
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I admit that I, personally, after having done some research, wouldn't put a lot of faith in the IgeneX tests. But again, that's just me.

People who aren't at a very high risk of lyme, due to lack of spending time outside, indoor pets, and a "low lyme incidence" area, have never seen a tick in their lives, and yet test positive, that makes me suspitious of the testing.

I'm not knocking anyone, and if Lyme is the TRUE diagnosis for you who have tested positive through IgeneX, then I wish you the best of luck in your recovery.These are just my opinions, and I'm sorry if I upset anyone with them.


Christine
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I don't agree that all doctors are Lyme literate docs. I have been fortunate enough that my PCP and NUROLOGIST (the one person who should know) admit that they just don't know enough about Lyme or the treatment. The infectious disease doc has even admitted to failings of the labs/ screenings/test results. I live in VA. a tick infested state.

I think everyone is entitled to their opinion and I think that the undiagnosed should leave no stone unturned. I think the more you know the better you can advocate for self. I don't think anyone should cram their opinion/views down anyone's throat regardless of the issue whether it's MS, MEDS, LYME, healthcare, politics, sex, religion the color of the sky... you get my point. There's sharing then there’s cramming.

I think pushing too hard at either extreme for or against an issue makes those that are soooo worn down from the fight question their own judgment during a time when they need a sounding board.

I like this forum because options, ideas and research were presented to me so I could independently seek out information and make decisions. It has thus far been presented in a loving and supportive fashion. Ultimately the decisions I make regarding my healthcare are my own.

The recommendation of Igenex was made to me from this forum and I viewed it as an option and opportunity and a tool to gather more info. A tool I have yet to utilize. I have spent many hours on Lyme websites and have seen many posts of those that have been found negative through igenex.


I understand the unsettling part of how some members feel... it is the reason I am not a member of a Lyme forum. I am very uncomfortable with the tone and the manner which information is given.

I think that all of us have seen enough doctors and have had to fight long and hard to get to this moment ..Whatever it might be. What we have all discovered to some degree is the imperfections of science/medicine. It is dark scary maze of uncertainty regardless of what diagnoses you may face and med choice you are making.  

Nothing is certain…

Rebeccah
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I appreciate Rebeccah's  honesty.  She makes valid points.  I think that I have felt so massacred before in this "forum" and on this forum that I am incredibly sensitive about the subject.  And, being undiagnosed, I really need to be informed.  Truly!

I should also disclose that a friend of mine, whom we have visited a few times within the last three years, has gotten bitten by an infected tick, here in Michigan.  Our friend, Ken, brought the tick to his internist.  The internist immediately put him on the recommended course of antibiotics.  He suffered some joint pain, and fatigue, and completed the two month (or whatever) course of antibiotics, and completely recovered.  He still has the tick in a plastic bag!

His internist knew what to do.  It never affected his nervous system.   If it had, the AMA or whomever has established guidelines to follow for treatment.  I believe an infectious diseases specialist could treat a case of CNS Lyme.  I don't think there's any secret sauce that LLMDs have come up with that conventional medicine has not identified.  I have overseen the clinical studies that are done in the office I work in, for a surgeon, and I get an idea of how all these FDA protocols work in a tiny way.  I just don' think the LLMDs have something that others don't.

What I think is this:  There are a LOT of people out there who are JUST LIKE US.  They are SO wanting a diagnosis.  Floundering around in Limboland, just like me.  Just like you.  And if one of these doctors has invested in Igenex, has money in it, and sends the patient's blood sample off to be analyzed, it comes back positive, even though it has never come back anything but NORMAL for any other lab.  The patient is thrilled to get a positive result.  How amazing that Igenex can figure this all out when no one else can!  Not Elisa, not Western blot.  Not by any of the standard or crappy or wonderful or amazing hospital labs in the USA.  But by Igenex -- positive.

So, the patient, who has been pinning all their hopes that SOMEthing will come out in the wash, FINALLY has a positive result, is ecstatic that they have LYME.  Finally -- a solid diagnosis.  A mimic for so many other illnesses.  How convenient.  And, perhaps, suddenly the patient feels better.  If someone at once has hope, they may.  

And things may go smashingly for a while, until they have symptoms again.  A relapse.  Maybe NOT Lyme.  Maybe the test was not right.  Maybe the test was fake.  Maybe the Igenex test was bought by a doc who had money in the company.  Maybe it's actually a relapsing-remitting disease.

Maybe it's fraud.  Maybe it's a conflict of interest.  Nothing is certain...

Zilla*  
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I know it may seem like that to you.  

Know this:  I am very happy you have your diagnosis.  I believe you have Lyme.  I have been on this forum from nearly the beginning.  I remember when you first came here.  I have followed your story, and feel that your symptoms make sense for Lyme.  I think you will do very well.

I probably should be insulted by your post, but I am just too plain stupid to be, I suppose.

I stand by what I said.  I am the clinical research coordinator for a very busy surgeon,  who is the principle investigator over many studies.  I have seen too many "investigators" who invest in the devices or drugs they "study."  Maybe I'm jaded.

I truly wish you the best.  I really think you do have Lyme.

Zilla*
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Hm, get a load of my story!

I live in CT.......not 15 minutes from ***LYME, CT!***, where this disease was first originated, discovered, made known.......

I have seen the posters in the library, showing a tick near the tip of a pencil, then the bloated tick. Other than that, it doesn't much cross my radar. I don't have pets, don't go camping. I do live across the street from a tiny patch of woods and I do hang my laundry on the line, but my clothesline is in the backyard, away from these woods.

So one day last May, my son was trying to goof around and pull me off the couch by my legs. I had on jeans, and ouch, something behind my right leg pinched, he had to stop. Lo and behold, my first ever tick bite. Must've gotten into the jeans?? The legs were still wiggling on the thing, it was sticking out of my leg. Needless to say, I was uh, a little surprised! How'd THAT happen?!

I've never yanked a tick out, this wasn't going to be easy for a first-timer anyway, since it was behind my right knee. I went to the clinic.

And here, in CT, near LYME, CT!!!!!, their procedure was? To throw the tick away! To give me a 1 time dose of 100 mg of doxycycline. Call them if I got the bulls-eye rash.

Fast forward to Dec. '07 and the same clinic says with my vertigo and hyper reflexes, I ought to see a neuro to rule out MS. Among other bloodwork, they did test for Lyme Disease. Which I thought was "weird", but nobody talked to me about things like mimics, etc.

I have learned from **this forum** that an MS mimic could be Lyme Disease! I have learned SO MUCH from here, what a blessing!

Now, with 20/20 hindsight, I have realized that my symptoms have occurred for YEARS before that tick bite. I may have committed an offense, but I did NOT INCLUDE info on my tick bite when I went to the neuro or to the MS neuro.

My facial numbness, paresthesias, bladder issues, blurred vision, vertigo, etc. all came BEFORE the tick bite.

Just a coincidence in my particular case.

I wish every one Good Health.....eventually????

Suzanne

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Well, I started this debate regarding my doubts about IgeneX, and it is the best and most measured of all the discussions we have had to date on the topic, but it is starting to get heated.  Up to this point there had been nothing personal said, but, the line is being crossed.

I need to request that no one post statements that are insulting to another person.  Those will be deleted by the Moderators from MedHelp.  Now it is time to stop and lay "this" (IgeneX)  topic to rest.  If we want to pick it up on another thread we should do so.  

Rebeccah - you are absolutely correct that  you, JulieBob, and Stacey all acted on advice and information we (and I) gave out on this forum.  I have been telling people to  get tested specifically by IgeneX.   So it probably appears that I am talking out of both sides of my mouth.  For this I apologize.  My views about the testing are changing, but this was probably not the place to air them first.

Stacey's diagnosis and hope for treatment and cure remain the valid topic here.  As I said in my post, she has REAL reason to suspect that she has Lyme and that her husband does, too.  No matter what anyone, including me, believes about the controversial aspects of the topic, Stacey has legitimate hope that her answers are within reach.  Lyme is VERY real!  It's neurologic effects are very real AND it's treatable!

Stacey - I hope none of this has upset you.  At no time did I ever mean to imply that you were headed down a wrong path - quite the contrary!  It was astute and brilliant of you to put the pieces together when your husband became ill.  I'm very proud of you!

You asked me a question on the 3rd about whether spasticity would be from  brain lesions.  In general, mild spasticity is usually from spinal cord lesions.  When the brain is so severely damaged as to cause spasticity, the spasticity is typically terribly & completely disabling.  If a person can still get around or walk AT ALL, then their spasticity is most likely from lesions in the spinal cord.  And Lyme disease is one of the few mimics of MS that can cause spinal cord lesions.  Is your husband having spasticity or muscle spasms?  Is he also have joint symptoms?

Quix
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Can you all follow up with what has happened since I have read all your posts and am struggling for a diagnosis and am confused by it all, is Ingenex okay as I may try to get this Doc to send the blood to them for testing..how are you doing ?
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sorry I thought I was till on the Lyme forum ....apologies
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