I'm your new neighbor moving from MS forum!

Good Morning,

I posted the other day.  I had gallbladder surgery in Jan 2010 and in March 2010 came down with severe anxiety and numbness, tingling, vibrating, all kinds of symptoms that have persisted now for almost a year.  I have been being seen at UCSF for MS.  My brain MRI showed 20 lesions (small and scattered) and not typical for MS.  I had many many other tests for MS...all of them negative.  I was tested for Lyme during my Lumbar Puncture but of course, that came of negative too.  Finally, in November, I drove myself to IGeneX Lab in Palo Alto since I'm not too far and ordered a blood test (quite expensive, but I'm desperate).  The results went to a new Family Doctor I began seeing.  She wasn't sure how to read the test, but thought they were negative.  I picked up the test and didn't really understand it.

Anyhow, upon further looking at it yesterday, I realized that I tested positive for WB.  At least I think I'm reading the results right.  

IgG Western Blot
Bands 31 and 41 have two ++
Band 58 has one +
It says the Egenex IGG Result is Positive
It says CDC/NYS Result is Negative

on the IGM Result
Bands 31, 34 and 83-93 have IND
Bands 41 and 58 have one +

Also I see something on another page about a titer of 1.80.....not sure what that means.

Anyhow, although I'm not happy about having Lyme, I feel a better about this possibly being Lyme than MS....ugh

This last year has not been fun.  I've been told I'm crazy, it's all anxiety..you name it.  

When I was 12 or 13 I was backing in Southern California mountains with a friend and her family for 3-4 days.  I had a tick buried in my belly button.  Not sure how long it was there because I didn't notice it until my stomach was very sore.  I think this is when I was first exposed to Lyme if that is what this is.

Now, my question, is for those with late stage lyme disease (I am having neurological symptoms...numbness in toe, vibrating in legs, tremor in hand, etc.) can I recover?  Have any of you had these symptoms and completely recovered from them, or do I have permanent nerve damage?

Thanks for listening and for any replys.

Carrie - Northern California

[JackieCalifornia]

Carrie,

Good for you!  You're taking action.  

According to a 2009 post on the website truthaboutlymedisease [dot] com, it says the following about your test results pasted below, with comments indicated by my insertion of a [comment:] below --

IgG Western Blot
Bands 31 and 41 have two ++

     [comment:  Band 31 is specific for Borrelia burgdorferi, aka Bb, aka Lyme disease.  'specific' means the bacteria are there, and the test lights up as positive ONLY for Lyme, not for anything else]

     [comment:  Band 41means there were spiral-shaped bacteria seen, and Lyme is one of those, but Band 41 could be any spiral-shaped bacteria.]

Band 58 has one +

     [comment:  may indicate Lyme, but unknown]

It says the Egenex IGG Result is Positive

     [comment:  yes, that is the IGeneX/ILADS interpretation]

It says CDC/NYS Result is Negative

     [comment:  CDC/NYS standard is stricter than IGeneX/ILADS, but that's part of the argument in the medical world.  The tests are to be read in view of your history and symptoms, not in isolation]  

on the IGM Result
Bands 31, 34 and 83-93 have IND

     [comment:  Band 31 is also specific for Lyme, meaning only Lyme would show positive]

Bands 41 and 58 have one +

     [comment:  Band 41 could be Lyme, but not sure]
     [comment:  Band 58 may or may not be Lyme, not sure]

Also I see something on another page about a titer of 1.80.....not sure what that means.

     [comment:  I can't explain the technical means of arriving at a titer, but it is a measurement of a particular test for a particular infection, which should be specified on the test result.  There is also a range given of what normal would be, and then the doc looks at your test result compared to the range given.  (It would be like a test to see if someone is, for example, "tall":  Tall is defined as over 6 feet.  Your result on the test is 5'10".  Therefore you are not tall.  What's not clear from your post is what was being measured.)

To your question about whether the buzzing etc will stop, yes, in my experience and others of whom I am aware, it does stop.  It's irritated nerves and brain, which are all hooked together.  Everyone is different, but if I were in your situation, I would have every reason to aim for being much better after treatment.  It's been very worthwhile for me and for others I know.

Best wishes!!!

[JackieCalifornia]

Carrie,

Good for you!  You're taking action.  

According to a 2009 post on the website truthaboutlymedisease [dot] com, it says the following about your test results pasted below, with comments indicated by my insertion of a [comment:] below --

IgG Western Blot
Bands 31 and 41 have two ++

     [comment:  Band 31 is specific for Borrelia burgdorferi, aka Bb, aka Lyme disease.  'specific' means the bacteria are there, and the test lights up as positive ONLY for Lyme, not for anything else]

     [comment:  Band 41means there were spiral-shaped bacteria seen, and Lyme is one of those, but Band 41 could be any spiral-shaped bacteria.]

Band 58 has one +

     [comment:  may indicate Lyme, but unknown]

It says the Egenex IGG Result is Positive

     [comment:  yes, that is the IGeneX/ILADS interpretation]

It says CDC/NYS Result is Negative

     [comment:  CDC/NYS standard is stricter than IGeneX/ILADS, but that's part of the argument in the medical world.  The tests are to be read in view of your history and symptoms, not in isolation]  

on the IGM Result
Bands 31, 34 and 83-93 have IND

     [comment:  Band 31 is also specific for Lyme, meaning only Lyme would show positive]

Bands 41 and 58 have one +

     [comment:  Band 41 could be Lyme, but not sure]
     [comment:  Band 58 may or may not be Lyme, not sure]

Also I see something on another page about a titer of 1.80.....not sure what that means.

     [comment:  I can't explain the technical means of arriving at a titer, but it is a measurement of a particular test for a particular infection, which should be specified on the test result.  There is also a range given of what normal would be, and then the doc looks at your test result compared to the range given.  (It would be like a test to see if someone is, for example, "tall":  Tall is defined as over 6 feet.  Your result on the test is 5'10".  Therefore you are not tall.  What's not clear from your post is what was being measured.)

To your question about whether the buzzing etc will stop, yes, in my experience and others of whom I am aware, it does stop.  It's irritated nerves and brain, which are all hooked together.  Everyone is different, but if I were in your situation, I would have every reason to aim for being much better after treatment.  It's been very worthwhile for me and for others I know.

Best wishes!!!

[JackieCalifornia]

PS meant to say:

the Lyme tests are run to detect IgG and IgM.  Shortly after an infection, your immune system responds by making IgM antibodies; after a while, your immune system shifts to making mostly IgG antibodies.  Therefore an experienced doc can estimate from the relative levels of IgG and IgM antibodies whether the infection is reasonably new or reasonably established.  The two stages overlap and are not precise, but then again, a lot of things don't have absolute levels.  It all has to be correlated with your history and symptoms.  That's where the docs earn their pay.

And another thing:

In the post on truthaboutlymedisease that I copied the band meanings from up above, the person who posted that (sorry, I didn't keep the name) made the following comment to the person s/he was responding to:  "One more thing I find interesting is that you said that you had MS symptoms and you also show ++ on band 31 (IgM and IgG).  I hae a ++++ on band 31 IgM and have MS type symptoms too.  When I read 'Cure Unknown' it talked about how the antibody OspA, that is represented by band 31, has been shown to cross react (and damage) with myelin that is found in the central and peripheral nervous systems.  It says this finding was published in the Journal of Neuroimmunology in 2005.  Of course I wasn't surprised to read it since I do have brain lesions."  

If you want to find that whole post, you can google a string of the words from the quote above and google will probably find it for you back at the original source.  You could also dig up the Journal of Neuroimmunology online.  They print some interesting stuff, much of it over my head, but educational nevertheless.

[carrie235]

Wow. Thanks Jackie! I have an appt with a Dr Sticker in san francisco. Soonest available is April 6th. I'm going to call every morning to see if someone cancels. I just want to start treatment asap before anymore damage is done if this is in-fact Lyme.

[carrie235]

Good News!

Dr. Stricker's office called and moved my appt up to February 15th from April 6th!  I realize that there may be more blood work, but I have some IGeneX blood work done so I'm hoping for some answers that day.  

Hoping that Feb 15 gets here soon!  It feels SOOO good to feel hopeful for diagnosis (and hopefully treatment that will make me feel better).

[JackieCalifornia]

Definitely take those test results with you, or even send them ahead, along with any other tests you've had done since you got sick, if you have copies.

[Weakandfalling]

Welcome, Carrie,

Actually I came here from MS Forum not long before you.  Nothing diagnosed yet.  Have seen an LLMD and plan to use IGeneX labs - tired of the run-around given by our usual labs.

I had a positive Lyme test 2 years ago and was blown off by the ID doctor my PMD referred me to then.  Much time wasted unnecessarily!

Glad you're diagnosed and getting treatment!  I hope to follow!

WAF

[wonko]

Hi and welcome.  

I'll confess to being too tired to read all of the above, but from the parts I did read your situation sounds like something to which I can relate.  

After years of seemingly unrelated odd medical instances, I suddenly went down-hill after a high-stress time in my life.  I know it wasn't the same as post-surgical trauma, but it was enough to tip me over the edge, and something that had been brewing beneath the surface finally took over.

I developed a host of neurological symptoms, and had an abnormal MRI (7-8 white matter lesions, including in the regions consist with MS).  I was 28 at the time.  I went on to have a clear LP and was never diagnosed with MS, the last advice I got from a top-university neurologist was to repeat my MRI every 6 months and "pray" it wasn't MS.

That was after a year of desperately searching for answers.  I lost the ability to work full time and was terrified of being forced to retire by 30.  So eventually my search for answers brought me to an LLMD.  

I'm 2+ years into treatment.  Everyone is different, but treatment has been very difficult for me, and I got worse before I got better.  But I think I'm "over the hump" and hopeful for further recovery.

As for your question, I had constant strong tingling and burning sensations in my face, hands, and feet for about a year.  I still get it, but it is far less severe, happens less, in less places, and doesn't last as long.  I've recovered quite a bit from heat intolerance, too.  I used to immediately tingle/buzz more in the heat, to the point where I sometimes had to go back to bed for hours after a shower because I couldn't walk or move much after one.  My vision is better now, too:  Though I still see flashing lights it doesn't get as blurry as it used to.  I don't know if I'll ever bee symptom-free, but I can say that it can go from very bad to mostly manageable.

I'm very glad that I have Lyme and co-infections and not something more serious, but these chronic infections are serious.  I hope you fare well moving forward but treatment can be tough and I still have bad days where I'm bed ridden or up and about but in a lot of pain.  And it is difficult to have an illness that is largely not recognized or understood.  So while we share your relief, know we're also here to listen and understand the battle ahead.

Good luck starting treatment, I hope it goes swimmingly for you!

[carrie235]

Thanks so much for your posting.  I've been kind of upset today because I received an message that you can still have MS AND Lyme.  Of course, I know that but for some reason it burst my bubble so to speak.

I also believe that since my MS Doctor at UCSF asked me if I'd had Lyme disease (after reviewing my MRI), then he feels that Lyme could be the culprit.  Also, why would they ALSO test for Lyme during the LP's if they didn't believe that Lyme could cause all these crazy symptoms.

I'm considering actually trying to stay off these forums because sometimes I'm more upset when I get off of them.

Anyway, thanks again and I really hope that we all recover from this sooner rather than later.  

[ewford]

Carrie, get started taking Banderol and TAO free-cat's claw.  These are biofilm busting supplements that help break down the biofilm surrounding the Lymes bacteria.  The ABX that you might get prescribed to you won't do any good unless the biofilm is breaking down.   do this ASAP.

[JackieCalifornia]

I'd be cautious about adding supplements without your LLMD's knowledge.  Some antibiotics are 'cyst busters' already, like Flagyl, so you may be covered.  I have not read enough about cat's claw to know whether it works through dispersing biofilm or otherwise.  Like many herbal supplements, it may not be entirely clear why it works.