Lymes testing and organ issues

[KrisMC271]

Hi I am new to the forum and have several questions that I was hoping someone could help make sense of the new diagnosis of Lymes Disease I received.

For 12 years I have been diagnosed/undiagnosed (back and forth) with Lupus of the Central Nervous System.  Last year, August 2008, I was diagnosed with Lymes disease after having 5 out of 7 bars show up on my IGM Lymes test.  I was treated twice with Doxycycline (2 mos.) for the Lymes but the treatment did not work and the doctors suspected that I may not have Lupus but had Lymes the entire time.  In July 2009, a year later, I was tested and the IGM Lymes test was again positive.  The neurologist confirmed I have Lymes Disease but told me that it should have showed up on the IGG test and not the IGM test because of the length of time I have had Lymes.  Now I have numerous questions.

1. Does this mean I have Lymes because I have neuro, heart and bone pain symptoms along with positive testing?
2. Can Lymes cause inflammation of the organs?  (I have had incidents of colonitis (colitis), pancreaitis, diverculitis, inflammation of liver and spleen, hypothyroidism, heart mitral valve prolapse and sclerosis, GERD, pericarditis as well as several drug resistant staph infections (MRSA) over a 12 year period). Can Lymes do this to a person?
3. Also can Lymes cause severe migraines?  I am now being treated for migraines that were causing blindness and dementia.
4. Are there any alternative medications that I could take since the Doxycycline didn't work?

I live in New Jersey and Lymes Disease is pretty normal occurance here.  But from those I spoke with they had severe problems immediately after contacting the disease, not chronic like I have.  That and they were hospitalized for months from this which almost ended in death.  My problems seem to come and go almost like lupus flares.  Flu symptoms, swollen glands, severe fatigue, severe bone and joint pain, muscle spasms along with some organ inflammation.  

Has anyone experienced fluctuating symptoms like this?

I appreciate any information you could give me to help me get an idea if this is normal or I need more testing or medication.  Thank you - Kristin

[wonko]

I am sorry to read about the difficult brought on by your illness, and the confusion in properly identifying and treating it.

1.  No one can tell you online if you have Lyme or not.  In my non-expert opinion, your situation sounds consistent with Lyme but that's not medical advice.  Many Lyme patients relay on so-called "Lyme literate" physicians, or "LLMDs."  You may want to look for one in your area.

2.  Lyme can cause inflammation.  It is often subclinical, not showing up on tests.  I do not know if it can cause all of the problems that you list.  

3.  Lyme can cause migraines.  I do not get classic migraine, but do get migraine auras and other pressure headaches from my Lyme disease.

4.  There are alternative treatments, again, an LLMD could advise you.  However, what comes to mind is that your antibiotic treatment could have been incomplete and/or too short.  A hypothesis is that chronic Lyme patients are co-infected with other illnesses carried by ticks.  These other infections may not respond to the same antibiotics that kill the Lyme bacteria.  So combination therapy is needed, not just doxy.  I'm on combination antibiotic therapy, for 9 months now.

I did not get very sick right away, and never was hospitalized.  My symptoms were so mild that it took me ~8-9 before I even went to a doctor!  The people who do develop acute illness early on are more likely to get treatment right away, and that reduces the chance of chronic problems.  In people who don't show those obvious signs, we miss the chance for early treatment.

And yes, Lyme can appear in a relapse-remit pattern of active flares separated by periods of improvement.  That happened to me earlier in my illness.  I had an attack of worsened symptoms followed by a near 100% remission that lasted for over a month.

A great (though dense) reference on these subjects is "Cure Unknown" by Pamela Weintraub.  Perhaps you should check your library for a copy.  

[patsy10]

Lyme can affect every area of the body.  It can cause almost every problem you listed as far as I have found in my reading.

Two months of doxy would barely make a dent in long-standing lyme in my opinion.  It took 4 months before I saw any improvement.  Also doxy is not very effective in standard doses.

Either a positive IgG of IgM can be indicative of lyme.  The testing is not very accurate in general.

I would see a physician that specializes in lyme.

Read as much as you can on it.  In the health pages here are Dr. Burrascano's treatment guidelines and other information.

[patsy10]

This paragraph is from Dr. B's treatment guidelines.  Look at the title "Advanced topics in Lyme disease" in the health pages for more info.

The TETRACYCLINES, including
doxycycline and minocycline, are bacteriostatic unless given in high doses. If high blood levels are not attained, treatment failures in early and late disease are common. However, these high doses can be difficult
to tolerate. For example, doxycycline can be very effective but only if adequate blood levels are achievedeither by high oral doses (300 to 600 mg daily) or by parenteral administration. Kill kinetics indicate that alarge spike in blood and tissue levels is more effective than sustained levels, which is why with doxycycline,
oral doses of 200 mg bid is more effective than 100 mg qid. Likewise, this is why IV doses of 400 mg once a
day is more effective than any oral regimen.

[KrisMC271]

Wonko and Patsy, thank you very much for your comments and suggestions.  I have found a doctor that treats lymes in my area and will follow up with him.  Best wishes to both of you - Kristin