Is it Lyme?

[Gzsimo]

Hello.  A little over a year, I developed this red rash all over the trunk of my body for a couple weeks.  About a month after I started having excruciating joint pain and stiffness. Stiff neck that is crippling. It would come and go. I was extremely active befor and now a year later not the same. Here are my test results
Lyme Disease AB (IGG) NEGATIVE
18 KD (IGG) Band 2 NON-REACTIVE
23 KD (IGG) Band 3 NON-REACTIVE
28 KD (IGG) Band 2 NON-REACTIVE
30 KD (IGG) Band 2 NON-REACTIVE
39 KD (IGG) BAND 3 NON-REACTIVE
41 KD (IGG) BAND 3 REACTIVE
45 KD (IGG) BAND NON-REACTIVE
58 KD (IGG) BAND 2 NON-REACTIVE
66 KD (IGG) BAND 2 NON-REACTIVE
93 KD (IGG) BAND 2 NON-REACTIVE
Lyme Disease AB (IGM) NEGATIVE
23 KD (IGM) BAND NON-REACTIVE
39 Kd Igm Band NON-REACTIVE
41 Kd Igm Band NON-REACTIVE
REFERENCE RANGE: NEGATIVE

As per CDC criteria, a Lyme disease IgG
immunoblot must show reactivity to at least 5 of
10 specific borrelial proteins to be considered
positive; similarly, a positive Lyme disease IgM
immunoblot requires reactivity to 2 of 3 specific
borrelial proteins. Although considered
negative, IgG reactivity to fewer specific
borrelial proteins or IgM reactivity to only 1
protein may indicate recent B. burgdorferi
infection and warrant testing of a later sample.
A positive IgM but negative IgG result obtained
more than a month after onset of symptoms
likely represents a false-positive IgM result
rather than acute Lyme disease. In rare
instances, Lyme disease immunoblot reactivity
may represent antibodies induced by exposure to
other spirochetes.

Trying to figure out what is wrong. Please help!  I feel like I may have some bacterial infection.

[kathloj]

My two cents,however there are some folks on here who are really educated and helpful about Lyme and may have better answers for you.

I know that Band 41 reacts to some other spirochetes including oral bacteria,  Trepomena Denticola. It also reacts to syphilis, leptospirosis and some other spirochetes. A good LLMD can make sure to rule those out, and given your symptoms it sounds like further exploration of Lyme is warranted.

Good luck and keep us posted!

[Gzsimo]

Thank you!  Do you think periodontal disease would cause the positive?  I read that somewhere.

[kathlojo]

Wise words of wisdom, thanks Jackie. I hope I don't need to see him again, but good not to burn any bridges. :)

[JackieCalifornia]

Feel free to use ... but just be cautious, because those who do not 'believe' in Lyme (as the misery that it is) too often do not have either a sense of humor or an open mind.  

Okay, that's harsh, but ... I think the docs get defensive when they continue to cling to what the medical profession keeps saying about Lyme being 'rare, hard to get and easy to cure', and here comes a parade of patients trying to teach the doc.  You might need that doc sometime, so don't burn any bridges unnecessarily.

Remember:  the best revenge is getting well.  :)

[kathloj]

"It would like saying that you only have a broken leg if the bone is sticking out through the skin, regardless of a history of being run over by a car and being unable to walk with that leg."

LOVE the analogy!  Hope you don't mind if I steal that line for my next appointment with Dr. Doubtful.  ;) I just need to pick up my MRI results from my neurologist for my consultation with my LLMD.

Great info Jackie, thanks for sharing.

[JackieCalifornia]

PS  Two things:

          (1)  You say in your post:  "Trying to figure out what is wrong. Please help!  I feel like I may have some bacterial infection."  

Lyme is indeed a bacterial infection, and the same ticks often carry other, separate diseases that need different testing and often different antibiotics.  So it's consistent with how you feel.  I felt like I had the flu and a hangover at the same time .... so I remember the misery.  

Good news:  it goes away with treatment.

          (2)  More good news:  I just googled/searched for

                               -- lyme disease indiana --

and there appears to be high awareness of Lyme.  This is excellent!  In some states, there are few docs who understand Lyme and its co-infections, partly because the local and state medical boards don't think Lyme is a serious illness.

It's great that you are in a state with what appears to be an open-minded medical community!  Local/state patient groups can be a good source of where to find a good Lyme doc, along with the ILADS referral function mentioned above.

Let us know how we can help, and also how you do.  Take care!

[JackieCalifornia]

Welcome to MedHelp --

And good for you for pursuing whatever is ailing you.  The key words to my eye are these:

"Although considered negative, IgG reactivity to fewer specific borrelial proteins or IgM reactivity to only 1 protein may indicate recent B. burgdorferi infection and warrant testing of a later sample."

Meaning:  you may be infected but your immune system is not currently producing antibodies against the infection, and the test looks for antibodies, not bacteria.  

There is a long and unfortunate history in the medical/scientific world about how widespread Lyme is or is not, and what positive test results are considered enough to diagnose Lyme.  The requirements to have more than "only 1 protein" showing positive on the test were established for epidemiological tracking to see where and how far Lyme disease infections were spreading, and to be sure the data were pure, the test results set a high bar for a confirmed diagnosis.  It would like saying that you only have a broken leg if the bone is sticking out through the skin, regardless of a history of being run over by a car and being unable to walk with that leg.  

Unfortunately those overly high standards have been adopted by so-called mainstream medicine as the minimum requirement for a Lyme diagnosis, meaning that many people with Lyme are being told they do not have it.  

There is also the issue of co-infections, which are separate infections the 'Lyme' ticks also carry about half the time.  Docs who shrug at Lyme are not likely to pursue testing for the other infections (such as babesia, bartonella, and some others), which need different tests and different treatment from Lyme.

Then there is this you quote above:  "A positive IgM but negative IgG result obtained more than a month after onset of symptoms likely represents a false-positive IgM result rather than acute Lyme disease."  IgM is the antibody your immune system makes soon after an infection.  After a month or so, the body slows down making IgM antibodies, assuming that the bacteria are all dead, and then starts making IgG antibodies, which continues for a somewhat longer period of time.  This makes good sense in most of the bacterial infections that humans have encountered over the millenia, but Lyme doesn't play by those rules.  Lyme bacteria are able to suppress the immune system, so that few or no antibodies are being produced, so the tests show all clear, when in fact, the Lyme bacteria may still be having a party at your expense.  This is quite common in Lyme infections.  By the time I got to a Lyme specialist (many months after falling ill), the doc expected my antibody tests to be near zero for the reasons just stated, but he was impressed that my immune system was keeping up the fight and still producing [somewhat low but still genuine anti-Lyme] antibodies.  

There are different tests that a Lyme doc will likely use, which do not rely on the immune system as the basic IgG/IgM test above use:  instead, the newer tests look in your blood for DNA of Lyme bacteria, which is direct evidence of infection, not the wishy-washy reactive evidence that the IgG/IgM-detection tests look for.

... Which is a long way of saying:  I would find a Lyme specialist without delay.  You do not need to tell your current doc you are doing so, because some so-called 'mainstream' docs will not want to see you in the future if you have been seeing what the mainstream docs think are quacks:  the Lyme docs.

There is a war raging in the medical world over Lyme, and we the patients are caught in the middle.  ILADS (International Lyme and Associated Disease Society) is the main voluntary group for docs who think more progressive thoughts about Lyme.  If you got to the ILADS.org website, there is a referral function there to help located a Lyme specialist.  You will see the term 'LLMD', which is short for 'Lyme-literate medical doctor' -- it's not a degree or a title, but simply patient slang for a doc who really understands Lyme disease and the other infections that the Lyme ticks also carry about half the time.  

If you have copies of the tests already done (by law, the doc has to give you a copy), take those with you to see an LLMD, because it may help the LLMD get a jump on your diagnosis and then treatment.

Sorry if this is confusing.  It's a complex situation, but I would do what you are doing:  trying to figure out what's really going on and get it fixed.  Please let us know if we can help further, and also how you do.  Best wishes --