Lyme or MS?

[Chris_1234]

Hello,

I have a few questions about Lyme disease that i'm hoping someone might be able to shed some light on.

Back in August 2014 i had my first event ( Numbness in my right  arm and complete loss of strength and fine motor control, which I gained back.) To make a long story short I went for a few MRIs. They found 2 white matter lesions in my brain. I took the ELISA test which came back as false positive and then tested negative on the Western blot.  This past December I had a lumbar puncture and my CSF fluid tested positive for certain Oligoclonal bands (at which point my Neurologist made a Diagnosis of Multiple Sclerosis), however the lab over looked testing for Lyme even though my Doctor had ordered it. Having the lab simply overlook testing for something is a troubling enough. My neurologist says not to worry because he's pretty confident with his diagnosis. My thoughts are, this isn't somebodies coffee you're screwing up should in fact he be wrong. I will be starting treatment for MS in about 2 weeks and am quite concerned that we may be treating the wrong thing with out the process of eliminating everything else 100%. I explained my concerns to my GP and Neurologist. At the time of my lumber puncture at least my Neuro was proactive enough to make notes for the lab to save 2oz of my CSF fluid should we require any further testing in the future (fingers crossed they actually followed his orders and saved some.) Am i blowing this out of proportion? Is there any other tests that should be done? The last couple of months i have been focusing my research on MS, so please forgive my ignorance about Lyme . From what I have read, certain strains of the bacteria that causes Lyme doesn't always show up when they screen the blood.

Any suggestion would be greatly appreciated.

Thanks in advance.

[JackieCalifornia]

You say above:  "Neuro says that she does not specialize in Lyme however my lesions look like typical lesions found in those with MS. I showed her my Igenex results and she willing said the she not sure how to interpret them."

This is the heart of the matter in my untrained opinion:  

-- The neurologist doesn't specialize in Lyme, and the training that neuros get in medical school, internship and residency simply blow off Lyme as rare, hard to get, and easy to cure.  These docs have simply 'disappeared' Lyme.  

A parallel situation from not so long ago:  I remember clearly when AIDS was first noticed by the medical community.  There was deep and reasonable concern among the public, and the docs were caught flatfooted as only Mother Nature can cause to happen.  The docs from the CDC (US govt's Centers for Disease Control) suited up in their long white doctor coats, some with stethoscopes slung stylishly around the neck, and were trotted out in front of TV cameras on national news to state quite firmly that unless you were (1) Haitian or (2) gay, You Could Not Get AIDS.  End of press conference.

That mentality and approach to newly emerging diseases is still in play in much of the medical community.  A doc not versed in more recent research and study about Lyme will simply not understand what is going on.  It's now years past when these docs would have just not had yet read their morning newspaper, and is instead willful ignorance.

It is both human nature and the (usually useful) medical approach to categorize new things we see (like your test results) and to then put those results into categories already known and vetted by The Very Smartest Kids in Chemistry Class, all of whom it seems became MDs.  

-- Neurologists are particularly clueless when it comes to Lyme, because it is simply not on their radar.  It's like removing a color from a rainbow:  you still see pretty colors, and if your eyes don't perceive ... say, yellow, then you can still enjoy the rainbow but have no clue that any colors are missing. That's what neuros do when it comes to Lyme:  it's just not visible to them, but they are sure they are seeing the whole rainbow.

It is very important (in my untrained, non-MD mind) to see a Lyme specialist, who CAN see all the colors in the rainbow.

The closing line on the report you pasted above focuses on multiple sclerosis, because it's the closest the docs can come to a diagnosis of Lyme *without ever testing you for Lyme* (if I understand correctly.)

In your situation, I would not spend time trying to get these docs to see the yellow band in the rainbow, and instead get yourself to a Lyme specialist, taking your medical test results with you, and get a second opinion from someone who CAN see all the colors in the rainbow.

I know all this sounds nuts, but it is simply the way things are.  Lyme is a very new disease compared to most others, and it has spread widely and quite quickly.  The deliberative approach of MDs to muse and evaluate and consider is a good one, but it causes them to miss newly emerging diseases and conditions.  

I personally had no idea that *I* had Lyme when I was so ill, and after cycling through a whole bunch (20 MDs to be exact) of highly educated and generally thoughtful docs, one finally ran a Lyme test on me, because everything else had been tried and tested on me.  The test results came back positive, but this MD gently told me that I 'could not possibly have Lyme disease' because, as the doc so memorably said, 'I have patients with Lyme, and they ... are all near death.'  Gee, how enlightened.

I knew about Lyme from an old school mate who is a highly trained scientist AND a careful thinker -- this school mate had Lyme a few years before I was diagnosed, so I knew it was a real ailment, because my friend would not go off chasing phony stories and diagnoses.  Would that all docs would wake up and smell the coffee.

So:  I would take your test results to a Lyme specialist and get a work up.  If it comes back negative, then you can go back to the current docs and pursue their thinking further.  But first I would want a qualified and experienced Lyme doc to tell me that I didn't have Lyme or its co-infections.  Go for it!  What do you have to lose but your illness?

Keep us posted, and all good wishes to you --

[Chris_1234]

Neuro says that she does not specialize in Lyme however my lesions look like typical lesions found in those with MS. I showed her my Igenex results and she willing said the she not sure how to interpret them.

I recently got a hold of a detialed results from my LB back in December. There are as follow;

CSF Total Volume; 9.5ml
CSF Appearance: Clear
CSF COLOR; COLORLESS
CSG SUPER NAT; COLORLESS
CSF WBC; 28
CSF RBC;  1
CSF LYMPHS 0.98
CSF OTHER CELLS; 0.02
CSF PATH COM; Moderately cellular cytospin preparation containing lymphocytes, scattered plasma cells and monocytes. Rule out infection, inflammatory process, degenerative disorder, etc. Clinical correlation is required.  Suggest flow if lymphoproliferative disorder is suspected clinically.

CSF GLUCOSE; 3.2 MMOL
CSF PROTEIN; 0.90 G/L
CSF ALBUMIN 0.52 G/L
CSF IGG; 0.163 G/L
CSF IGG/ALB RATIO 31%
ALB INDEX 12.4

IGG INDEX 108
SERUM IGG 12.2

PATTERN; Several bands of varying concentration seen in CSF (but not serum) follow IEF-IGG immunoblotting.  Oligoclonal banding pattern, frequently seen in multiple sclerosis.  Elevated albumin index is suggestive of increased permeability of the blood brain barrier.

[JackieCalifornia]

Yippee!  I'm in!

[JackieCalifornia]

[just testing here to see if I can still log in -- I think they're working on the site]

[JackieCalifornia]

PS:  IgM and IgG are abbrevations of "Immunoglobulin M" and "Immunoglobulin G".

IgM are antibodies (against Lyme and other bacteria) which your immune system produces to try to kill certain bacteria (including Lyme bacteria) early in an infection.

IgG are also antibodies against Lyme etc., just like IgM except that they show up later than IgG, to act as the mop-up brigade against Lyme and certain other bacteria.

The more "+" signs, the stronger the indication of Lyme (range of + to ++++), and IND means 'indeterminate', meaning maybe Lyme, maybe not, but I am thinking given your other positive test indicators above, IND would like be counted as indicating Lyme too.

So to my amateur eye, these test results are looking a lot like Lyme.

What does your doc say?  ... and ALWAYS get and keep all such test results to show later to another doc, if needed ... that happens more often than you'd think.  Keep us posted!

[JackieCalifornia]

MRIs are largely irrelevant in diagnosing Lyme disease, from what I read.

As to the blood tests you had, were they Western blot/ELISA or PCR?  PCR is better, but Wblot/ELISA are helpful.  'Specific for Lyme' means ONLY Lyme will show this marker, and nothing else in Mother Nature's arsenal will show it.

IGM  -----------------------------------------------------------------------

18KDA ++           band 18 is 'highly specific' for Lyme
34KDA IND          this is Outer Surface Protein B (OspB) -
                               specific for Lyme
41KDA +             this is a marker of little whip-like tail
                                that can be Lyme or can be something else.      

IGG  -------------------------------------------------------------------------

39KDA IND          this is a major protein of the Lyme bacteria's tail -
                                specific for Lyme
41KDA ++           same as 41 above                      
58KDA +             unknown but may be a Lyme marker
--------------------------------------------------------------------------------
Bottom line:         Looking pretty much like Lyme.  
                           What does your doc say?

[Chris_1234]

Hello all,

Just an update.

I have since switched neurologists to someone who specializes in MS.

Long story short, she had ordered another MRI. and...

http://s29.postimg.org/708v16lx3/T2_Flair_Propeller_Im21.jpg

I also since had the blood serum sent to Igenex and the results came back as

GM
18KDA ++
34KDA IND
41KDA +

IGG
39KDA IND
41KDA ++
58KDA +

[JackieCalifornia]

"He concluded with my Neurologist that it was PROBABLY Multiple Sclerosis and that he was satisfied with the diagnoses that had been made and sent me on my way...."

This is not an unexpected response from neurologists and infectious disease (ID) docs -- in fact, I would be shocked (shocked!!) if a neuro or ID doc took any other position.  There is a huge split in the medical field, not unlike when AIDS first was encountered; I remember clearly a well-respected, high-in-the-hierarchy, white-coated doc (complete with stethoscope draped around his neck, as I recall) who went on national TV news and flatly stated that you could not get AIDS unless you were Haitian or gay.  To that point in time, the only known AIDS patients were Haitian or gay, but the lack of logic behind the doc's statement is startling to say the least; the docs who deny Lyme as anything worse than the sniffles are part of the problem.

Docs are only human, but they tend to forget that sometimes ... so we must keep remembering it ourselves, in self-defense.

I agree with Mojo that Lyme does present like so many other ailments (particularly when the Lyme tick carries other separate infections such as babesia, bartonella, some others) that cloud the diagnostic picture because of the wide variety of symptoms.  

I don't recall a lot of Canadians who post here, but there have been some -- you can type in a search like    --  Canada Lyme --   in the search box at the far top right corner of this website and see what you get.  To my understanding, Canada's health system tends to make pronouncements about diagnosis and treatment in a firm manner which is unlike the wild, wild West of medicine found in parts of the US.  Some states in the US are ruled more harshly by the local and state medical boards, but in other states, an MD is free to practice according to his/her conscience.  

(California [where I am] is one of the less restrictive states, which is indeed fortunate for me and my family.  My Lyme doc here had patients who flew in just to see him, not only because he's really good, but also likely they were from states where diagnosis and treatment of Lyme are squelched.  PS:  After diagnosis is made and treatment established, checkups are maybe once a month, so flying in is doable at some level.  Note that treatment for Lyme is counted in months, not weeks, and any co-infections will likely require separate treatment not concurrent with Lyme treatment.)

As a result of the apparently more restrictive Canadian health care system, you may have to lurk around to find a Lyme doc -- I think CanLyme was mentioned previously as a source of broadminded Lyme docs.  There is bound to be a quiet underground of Lyme docs, but they would naturally not advertise.  Look online for patient-oriented sites like this one, and you'll begin to find some threads that are useful.  Or, if you're in an LLMD-free province, consider coming to the US to an LLMD-friendly state like California if that's closer to you.  Bottom line:  there are good Lyme docs to be found, but in some places it takes a little snooping around and keeping it quiet.

Do keep us posted -- and all good wishes to you!  

[mojogal]

I wanted to add that I was misdiagnosed with MS, lupus and several other illnesses when I really had Lyme and several co-infections. This happens more often than not since lyme is called the great pretender and looks like so many other illnesses. Find an LLMD like Jackie said.

[Chris_1234]

I should also mention that I have chosen Copaxone (it is not immune suppressing) as a treatment for MS. Time is of the essence if it is MS and treatment at an early stage is critical to maintain a somewhat normal lifestyle 10 years down the road.

[Chris_1234]

Both of you, Thanks your for the replies.

I  had been to see an infectious disease specialist about 3 weeks and It was actually him that pointed out that my CSF fluid was not tested for Lyme and that he would contact the lab on my behalf to see if in fact they stored some of my CSF fluid and to test it if they had some.

He asked the usual questions like, do you recall being bitten by a tik, do you spend alot of time in the bush...ect ect. My answer is no, i dont recall being bitten but yes i spend a considerable amount of time out side in summer enjoying summer time activities and one of those include riding my ATV, which I ride on trails in the bush. Anywho, He concluded with my Neurologist that it was PROBABLY Multiple Sclerosis and that he was satisfied with the diagnoses that had been made and sent me on my way....


Im not sure where you two are located but i'm in Canada. Im not really aware of any Lyme Disease specialists in my area but i guess its time to get on the horn.

[JackieCalifornia]

Welcome to MedHelp Lyme -- I'm no doc, but your analytical approach to the current situation strikes me as on the mark.

From what I read, MS is an auto-immune disease, in which your immune system attacks your body.  Treatment for auto-immune disease is usually meds to suppress the immune system, which means it is critical to know for certain that you have MS and not Lyme, because Lyme is a bacterial disease, not auto-immune.  Suppressing the immune system in someone with a bacteria infection such as Lyme is the absolute wrong thing to do.

There is a huge split in the medical community about Lyme:  how serious it is or not, how widespread it is or not, how to test and diagnose it or not, and of course how to treat it.

When Lyme was first identified a couple decades ago, the initial determination by the discoverers was that Lyme was a simple bacterial infection like many others, which can be cured easily with a few weeks of common antibiotics, like an earache.  Those docs however apparently stopped researching afterward, but still hold great sway in the medical world -- including the tests used to diagnose or rule out Lyme; which antibiotics to use; how long treatment should be; and the meaning of continuing symptoms after treatment is done.  

For continuing symptoms after the standard treatment of doxycyline for a few weeks, the usual term applied by most of the medical profession is that you have  'post-Lyme syndrome', meaning that you may still feel lousy, but because you've had the standard treatment, you are by definition cured and any continuing misery is your immune system over-reacting, so learn to live with it.  (Uh, no.)

It sounds likely that you are being treated by docs who adhere to this old-line view.  When I was ill, I went through 20 docs of various specialties and none, and #20 tested me for Lyme only because the other 19 docs had already tested me for everything else.  The Lyme test came back positive (!), but Doc #20 said I could not possibly have Lyme because I "didn't look sick enough."  Yeah, right.

I knew a bit about Lyme from an old friend who had had it back East, so I took the test results from Doc #20 and went straight to a Lyme specialist, who ran some more tests and confirmed diagnosis of Lyme and a co-infection (separate disease) often carried by the 'Lyme' ticks.  There are several common co-infections, and they all have different symptoms, which confuses the diagnostic pictures for docs who are not Lyme-savvy.

The docs who 'discovered' Lyme years ago are resting on their laurels and see no reason to update their understanding.  That sounds like the kind of doc you have seen.

Here are a few specific comments about your doc experience so far:

--"Back in August 2014 i had my first event ( Numbness in my right  arm and complete loss of strength and fine motor control, which I gained back.)"  Yep, that's tick season all right.  Your symptoms can indicate Lyme, from what I read, but everyone is different in presentation of symptoms, which only confuses the ignorant docs even more.  Another aspect is that about half the time, the 'Lyme' ticks also carry other, different bacteria which cause infections entirely different from Lyme.  The symptoms of these 'bonus' diseases (aka co-infections) are also often far different from Lyme, and the symptom array confuses docs who don't understand this.

You say:  "I went for a few MRIs. They found 2 white matter lesions in my brain."  To my understanding, MRI is not useful to rule out Lyme disease.  Therefore a negative MRI does not mean you don't have Lyme.

You say:  "I took the ELISA test which came back as false positive and then tested negative on the Western blot."  Was it the same doc who told you it was a 'false positive'?  That's just dumb.  Positive is positive and should be explored further.

You say:  "I had a lumbar puncture and my CSF fluid tested positive for certain Oligoclonal bands (at which point my Neurologist made a Diagnosis of Multiple Sclerosis), however the lab over looked testing for Lyme even though my Doctor had ordered it."  Lyme bacteria are not commonly found in spinal fluid, so not much loss in not having the test made for Lyme.  

You say:  "My neurologist says not to worry because he's pretty confident with his diagnosis."  Ah, neurologists.  They are among the specialist docs who don't much believe in Lyme, so I would discount that opinion and see a doc who understands Lyme (more on that in a minute).

You say:  "My thoughts are, this isn't somebodies coffee you're screwing up should in fact he be wrong."  Hurrah!  That's the spirit!

You say:  "I will be starting treatment for MS in about 2 weeks and am quite concerned that we may be treating the wrong thing with out the process of eliminating everything else 100%."  I totally agree with you, and personally I would NOT take MS treatment until after seeing a good Lyme doc.  As mentioned above here, treatment for MS suppresses the immune system, which is the exact opposite of what should be done in a bacterial infection like Lyme.

"...my Neuro was proactive enough to make notes for the lab to save 2oz of my CSF fluid should we require any further testing in the future (fingers crossed they actually followed his orders and saved some.)"  If you've got Lyme, you won't need it.  Lyme testing is a blood test, not a spinal fluid test.

"Am i blowing this out of proportion?"  No.  You are asking good questions, and keep on doing it.

"Is there any other tests that should be done?"  Yes, but your current docs will not run them or believe them.  The Western blot and ELISA tests (usually done one after the other) may well give negative results ('No Lyme here'), but it is very possible that the result is a FALSE NEGATIVE -- meaning the test says 'no Lyme' but there actually IS Lyme present.  

How does this happen?  The standard W.blot/ELISA tests function by looking for your immune system's production of antibodies against Lyme bacteria -- this approach works well in many other infections, but Lyme bacteria have the ability to *suppress* the human immune system.  Result:  negative test result, while you may indeed have Lyme.

There is another test not used by most mainstream docs (who think W.blot/ELISA are just fine), which is offered by a company in Calif. called IGeneX.  (They have a website pitched at a fairly high scientific level explaining their tests, if you are interested.  I'm no scientist, but I followed most of it.)  The IGeneX tests do not rely on your immune system's reaction to the presence of Lyme, but instead look in your bloodstream for DNA of the Lyme bacteria.  Lyme specialists often use both W.blot/ELISA *and* IGeneX PCR testing (=polymerase chain reaction).  I have seen some comments here lately saying that PCR testing is not as good as it should be and possibly not as good as W.blot/ELISA, but I haven't been able to figure out what the poster's data and reasoning are, given how many flaws there are in W.blot/ELISA.

It would likely do *no* good to ask your current docs to run the IGeneX tests, because they see W.blot/ELISA as quite sufficient, and are even suspect of IGeneX.  They would also not know what to make of the IGeneX tests.

            ===[end of part one; see following comment for part two]===