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Avatar universal

Could this scenario be Lyme Disease

Hi, I'm new to this forum and any input will be appreciated.

I got bitten 20 years ago when I lived in Massachusetts, I ended up in the ER and was treated with antibiotics for one week and allergy medication. My legs got swollen and the rash was as big as a pancake, with a center.  After that I developed plantar fascititis (more than 18 cortisone injection through this past 20 years), asthma, thyroid disease (most likely Hashimoto's), constant bronchitis and sinus infections and what is most devastating chronic cystitis with no infection when urinalysis is done.  I started to have joint and muscle pain about three years ago, overwhelming fatigue, hair loss, confusion ( can't drive anymore), difficulty writing ( have to correct myself over and over).  Three years ago I was treated for H. plyori, my digestive tract still gives me trouble one in a while, I follow a gluten free diet at the moment.  I trusted my doctors and never check my blood work until a few months back.  
When tested for Lyme Disease IgG band 41 came back positive with only one +.  My blood work also shows very low folic acid, vitamin c and D are also low.   I received shots of B12 so that one is okay.  I have high coagulation, high EOS and CRP.  Doctors tell me I have an immune disorder and want to put me on immune suppresive medication, which I declined since I believe the problem is something else.
Sometimes I run a low fever and break into a sweat, which is not a hot flash, since I get chills, need to lay down and cover myself.  I always feel I have a UTI infections, but nothing is found.

Of course doctors think I'm making up symptoms and that it's all in my head.  I know about the co-infections, but two doctors (rehumatologist) have refused to test me.  I am making an appointment with a Lyme and infectious disease doctor.  

Do co-infections always show in the blood work?  Can a doctor treat you based on symptoms only?

Sorry this is so long, I really need some input from those who have experience.  Thank you so much.
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Avatar universal
bECAUSE lyme mimics other neuro disorders like Diabetes, mS, LUPUS, PARKINSONS, these are pretty uncommon disease in my opinion and are found usually in certain groups of people.
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Avatar universal
Sounds like LYME disease, you are displaying the classical symptoms of lymes.
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1763947 tn?1334055319
Dr's many times misdiagnose us with MS, lupus, etc. I was misdiagnosed with those and additional illnesses as well. I was given steroids and taking it made me wind up in the hospital on a breathing machine.  I will never take steroids again.
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Avatar universal
correction:

"But treatment is a whole different thing -- nonLyme docs don't usually treat fulls, but we can get into that later."

'fulls' should be 'fully' .... my fingers override my brain sometimes when typing.  sorry.

By not treating 'fully', I mean that nonLyme docs will often give a couple weeks of doxycycline and call it a day.  That works immediately after infection, but for anyone who has been infected for longer than a few days or so, doxy can't reach the Lyme bacteria where they hide:  in cartilage.  

That's one of the big differences between Lyme specialists and other docs -- knowing that treatment needed is different not only as to what infection(s) you have, but also how long you have had them.  Lyme specialists are imo the way to go.  It took me 20 docs to run a test that I tested positive on for Lyme, but that doc blew the test off and I wasn't sick enough to have Lyme.  Duh.  I had an old friend years ago who struggled with Lyme before Lyme was well known, and I knew from that that Lyme is a 'so what' infection.
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Avatar universal
Greetings and welcome to MedHelp Lyme --

You are one of the relative few of us who actually know when you were first bitten.  Since you were treated immediately back then, a week of antibiotics might have been enough, but since the 'Lyme' ticks often carry other, separate infections, that particular antibiotic might not have killed them all.  Dunno, and it was a long time ago, with thousands of opportunities to have been bitten since then, and many of us (including me) never saw a tick or a rash, and that could have happened to you as well.  

Ticks like going back to the buffet table and aren't shy about biting someone who's been bitten already, so your current misery could be related to that long-ago bite, or could easily be one or more recent bites that aren't only Lyme, since the 'Lyme' ticks often carry one or more other infections.  All possibilities are on the table.

I'm not medically trained, so this is all speculation on my part, but ... here we go, fwiw:

-- Cortisone suppresses the immune system, and when you have a bacterial infection like Lyme and/or any of its co-infections that come from the same ticks, steroids like cortisone stop your body from fighting the infections.  Result:  they stick around.  Any doc who gives steroids to someone with a bacterial infection without a really good reason is not a doc I would want to see.  Many docs do not understand or appreciate Lyme as a serious ailment, so it may be that this particular doc thought s/he was doing you a favor, but it wasn't, to my reading.

  
+++
Whether your other ailments are related to Lyme or to something else would be a question to ask an MD who is a Lyme specialist, but I will note in passing that Lyme bacteria like areas of low blood flow in the body, because it is less likely that the human immune system can find (and kill) the Lyme bacteria there.
+++

You say:  "I developed plantar fascititis (more than 18 cortisone injection through this past 20 years), asthma, thyroid disease (most likely Hashimoto's), constant bronchitis and sinus infections and what is most devastating chronic cystitis with no infection when urinalysis is done."  This is something to talk to a Lyme doc about too, because many of the areas of infection you list are cartilage and therefore have low blood flow, and therefore not an area where the immune system can easily reach, and therefore an area that Lyme love to hide in.

You say, "I started to have joint and muscle pain about three years ago,overwhelming fatigue, hair loss, confusion (can't drive anymore), difficulty writing (have to correct myself over and over)" -- and all of these can be a symptom of Lyme.  

You also mention H. pylori -- I have not done much reading on that topic, but it is something that you should talk to your Lyme doc about -- there may be a connection of some sort, but I haven't done enough reading to know any more than that.

"When tested for Lyme Disease IgG band 41 came back positive with only one +."  Any + is a +, and should be considered in the whole picture, from what I read.

"Doctors tell me I have an immune disorder and want to put me on immune suppresive medication, which I declined since I believe the problem is something else."  What immune disorder do they think it is?  Like you, I would be very cautious about treating for immune suppression, because when you have a bacterial infection (like Lyme), the immune system needs to be up and fighting, *not* suppressed.

You say:  "Sometimes I run a low fever and break into a sweat, which is not a hot flash, since I get chills, need to lay down and cover myself.  I always feel I have a UTI infections, but nothing is found."  Lyme messes with the whole endocrine system, which controls body temperature among other things.  Be sure to tell your (new) Lyme doc.

You say:   "Of course doctors think I'm making up symptoms and that it's all in my head."  Unfortunately, that's not uncommon.  But be true to yourself and what you know about how you feel.

"...  two doctors (rheumatologist) have refused to test me."  That's okay, because rheumies generally are not knowledgeable in how to treat Lyme anyway.  No loss.  Move on.

"I am making an appointment with a Lyme and infectious disease doctor."  Here is where things get really complicated:  infectious disease [ID] MDs are unfortunately among the types of MDs who generally do not take Lyme seriously.  By all means, take the appointment, get the tests done, get full copies of ALL the tests (not just summary pages), and then decide which way to go.  You might get lucky and find an ID doc who really does take Lyme seriously, but that isn't the way I'd bet.  Go for it, and let us know how it goes, okay?  Having test results is worth doing, to take to another doc if needed.

You ask, "Do co-infections always show in the blood work?"  Only if the doc checks the box on the test order form to tell the lab to check for certain items.  If the box isn't checked by the doc, the lab won't run that test.  But I'd go through the drill, just *being sure* to get full copies of the test results.  By law I think you are entitled to the full results:  you paid for them, they're yours.  Then you can review the results and decide what to do next.  You could get lucky and find a wise ID doc who believes in Lyme -- here's hoping!

You say, "Can a doctor treat you based on symptoms only?"  Yes, but they usually want some kind of test confirmation.  The standard Lyme tests are often negative when you really do have Lyme, but if you get a positive result on the standard tests, you'll have an easier road to treatment.  But treatment is a whole different thing -- nonLyme docs don't usually treat fulls, but we can get into that later.

Bottom line:  I'd go through with the appointments and tests you have on the horizon, then consider what route to take.  Hang on!  You're doing all the things I would do.  Keep us posted.
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