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Acute CAD, Migratory Joint Pain, and Chronic Fatigue Possible Lyme?

I really despise the Lyme bandwagon that's sweeping the country, however my conditions are serious enough for me to ask the question: Do I have Lymes?

I have had several years of migratory joint pain, and an emergency room visit for acute coronary artery disease.

I am an avid outdoor person, and have been my whole life. I have probably been bit by several hundred ticks. NOT ticks just found on me and a bite was suspected, but pull till you here the pop bites and have a festering sore for a few weeks type bites.

My frustration with debilitating migratory joint pain has reached a boiling point. I have had the standard lyme screening  twice, both times were negative. My Dr thinks its depression, and has me on serotonin wizardry drugs, which seemed to help initially, but are definitely no longer helping.

How do I proceed?
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Avatar universal
Good for you for taking charge --

As many of us have learned, there is significant confusion in the medical community about Lyme.  The symptoms and misery can be acute, but many of us are in 'only' in middling misery, still functioning (sort of) every day.  I was ill for over a year and saw some twenty MDs of various specialties and none, but the only clue I got was this from Doc #20:  "I would say you have Lyme disease, but you don't look sick enough to me."  (Gee, thanks, doc.)  

That's part of the problem:  Lyme can be on a semi-tolerable level of misery, so the docs chalk it up to everyday issues, not to a bacterial infection.  Lyme has spread so widely and so fast that many docs still hold to what they learned in med school not long ago, to wit:  Lyme is rare, hard to get, and easy to cure, with a short course of simple doxycycline antibiotics.  

When that approach fails and the patient comes back as sick as ever, the next dodge from the docs is often, "It's post-Lyme syndrome:  you may have had Lyme, but the short course of doxycycline [antibiotics] you took has eradicated the infection."  And out the door.  No further attention needed.

[Side note:  The trick is that 'doxy' can indeed kill Lyme, but *only* in the very early stages of Lyme, when the insect has not yet burrowed into the body where your immune system can't reach, hiding in slimy shields the bacteria create called biofilms.  Many of us never see a tick or get the famous circular red rash where the tick first bit, and the older docs may put great store in the patient having that rash.  If there is no history of such a rash, then the old-style docs tend to discount Lyme as the cause of current illness.  Full stop.]

The good news, however, is that other MDs who take a more progressive course against Lyme really do exist, though they often keep quiet to avoid irritating the (often senior) old-style MDs who could cause problems for the more progressive docs.  The trick for us patients is to find an MD who is more progressive, and to let the old-style docs go back to slumbering.  

So don't 'despise the Lyme bandwagon' --  they are the ones who are going to save you from Lyme, bandwagon or not.  The old breed of Lyme docs just haven't kept up with progress in Lyme ... much as happened when AIDS first came on the scene some decades ago.  There was much panic among the populace then, who feared that AIDS would infect everyone quickly and easily.  That was a reasonable fear not yet entirely dispelled, and I remember well the news conference back then when a white-coated MD from the Centers for Disease Control in DC (complete with stethoscope slung around his neck) went before the live TV cameras to intone that one cannot get AIDS unless you are either Haitian or gay.  Full stop.

Well, anyone with half a brain (including me, half-brainless or not) knew that bacteria don't give a whit who they infect, but the CDC's excuse used to quell panic was the best the medical community could come up with at the time.  The error was corrected as months passed and AIDS cases increased, and no one every mentioned the earlier dim-witted and desperate error by the white-coated doc.  

So.  Why the lecture above on AIDS?  Because the medical community has been (and still is) making errors about Lyme disease the same way the CDC messed up about AIDS.  So ... keep an open mind about Lyme.  It took me to go through 20 docs finally to get a Lyme diagnosis.

Don't expect harmony among all the docs -- they are just doing the best they can.  But also be on the lookout for yourself and don't simply go along with received wisdom:  it can be badly wrong.

There is a well-known group called ILADS -- International Lyme and Associated Diseases Society -- which MDs who have more progressive views about Lyme.  There are ILADS members throughout the US, and I would start there looking for a Lyme specialist near you.  Treatment takes up to a year (but varies among different patients), and once established with a doc, appointments are often about once a month.  Some patients are willing to drive substantial distances to get to a doc they 'click' with, but it's up to you.  

There is still research being done, so don't expect a pat answer from a doc about what you have and how to treat it.  The mix of co-infections from whatever tick(s) may have gotten you can take a bit of parsing.  I had Lyme disease and another infection often carried by the Lyme ticks, called babesiosis.  A good doc will take a careful history of your symptoms to determine what infections you might have, and then have blood tests run to see which are positive.  

Then the treatment approach is put together -- what gets treated first, then when it's gone, move down the list to the next infection.  Treatment can take months, due to the complexity of the infection(s).  Not to worry, it's just normal course.  

I was on antibiotics about 9 months (memory fades, tho), and then I was still tired for maybe another year, and finally I was my old self again -- and still am, almost ten years later.
... and uh..., you might reconsider your habit of popping ticks when they are still embedded in your skin:  that forces the tick spit [or whatever it's called] into your bloodstream, carrying with the spit infectious agents like ... Lyme.  Talk with your soon-to-be Lyme doc about how to remove ticks without blasting your system with another infection.

Your current doc is trying, but you need a Lyme specialist.  To find a good one, go to the ILADS website (mentioned above) for a referral.  There's no guarantee that *all* their referrals are great docs, but you gotta start somewhere.  If there isn't a 'fit' between you, then try another doc.  Once established in treatment, visits to the doc are usually about once a month, so go for the best fit -- you won't regret it.

All good wishes to you --
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428506 tn?1296557399
I can relate to your post as when I was trying to figure out what was wrong with me, I was also put off by the so-called "Lyme bandwagon."    

However, faced with no other clear diagnosis or path towards treatment, I finally sought out a Lyme literate doctor.  This was going against the advice of every mainstream doctor/specialist I saw over the course of a year or so.  I was uncomfortable going against the grain, but in assessing the situation, trying oral antibiotics for a few months was relatively low-risk, while continuing to be in "limbo" with no treatment and worsening symptoms was endangering my employment and becoming downright scary.  

I'm happy to report that despite my initial misgivings, Lyme treatment helped me get my life back.  It did take a long time, but I got better using oral antibiotics only-no IV.  I also didn't need to follow any specific diet or use other alternative treatments.  I never had any definitively positive tests for Lyme disease, and while that really bothered me at first, once I started responding to treatment it really didn't matter to me and I accepted that I had some form of chronic infection.

I second Jackie's advice to seek out an ILADS member physician and to go from there...
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Avatar universal
Well said, wonko -- and good to hear from you.  :)

All the best to you and yours! -- J
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