Possible lyme

[Stroud5393]

For the past year and a half I've been having unusual symptoms everyday I have these lightheaded spells that come and go I have heavy head and ear pressure constantly and my ears are always popping my muscle have been twitching everywhere off and on for about 6 months and I've been having these needlike sensations off and on everywhere for about 2 months and I'm always in like a fog I can never concentrate on anything and my eyes feel strained all the time and I'm in pain all the time all my joints and muscle hurt all the time. I've been to a PCP I've had lists of tests CBC cmp thyroid tests urine tests Elisa and western blot for Lyme RA panel ANA test crp test all that was normal. I've seen a neuro and had a MRI that was clean and both physical exams were good and I had a eeg that was clean. I've also seen a GI doc had a endoscopy and colonoscopy which were good besides a colon polyps that was noncancerous and removed. I was tested for Celiac's disease and it was negative. I'm so stressed out that they can't find what's wrong I'm so miserable everyday....... I can't take it much longer has anyone felt like this or got any suggestions PS. I live in Tennessee and I've heard it's rare to contract it here

[JackieCalifornia]

I hear you.  You might want to look up online

    LymeTAP

and/or

    LymeLight Foundation

(and possibly others), they may provide assistance for testing and treatment, but I don't know the details.

[Stroud5393]

OK I will I'm just worried about insurance not covering anything o don't have a whole lot of money ya know

[JackieCalifornia]

I'm not sure, wasn't an issue for me since I got really sick pretty fast and got treated fairly soon.  I wouldn't worry about IV abx -- if it's needed, then I'd do it.  It's a good question for your doc.  Let us know what you hear back, okay?  

[Stroud5393]

Also I had one more question I've read if you've had Lyme for a long time oral antibiotics won't work I've read you have to have iv antibiotics because orals won't reach the blood brain barrier is that true?

[mojogal]

Lyme is called the great pretender, it mimics other illnesses like ALS. I was misdiagnosed with that, MS, and lupus to name a few. Like Jackie said get to that appointment and plow ahead.
Good luck

[Stroud5393]

Thanks Jackie I will definitely keep you updated. Like I said I fear ALS because of the twiching and poor pronouncing of words honestly I hope it's just lyme

[JackieCalifornia]

Good for you for plowing ahead to make an appointment!  It is true that some Lyme docs don't accept insurance, and for a very good reason:  If a doc signs up to be part of an insurance plan, then (to my understanding), the insurance company will object to paying the doc for any treatment given to the patients through that doc *except* treatments that the insurance company says are okay (though if the doc can convince the insurance co. that certain other meds that are NOT approved by the insurance co., it may go through just fine.  

(Sorry, it looks like I started a few different posts to you, but got interrupted.  If what I write make no sense, just ignore it!  :)

[JackieCalifornia]

and one more PS:

if you are nervous and concerned that you might forget to get across to the doc all the really important things, then the day or a few hours before the appointment, make some short notes for yourself to refer to when you are meeting with the doc.  You know, like people do when they are giving a speech:  the notes are to be sure all the really important stuff gets covered.  

I had a doc tell me once, "Don't read your notes; just tell me."  I understood what he meant, but he didn't understand how anxious I was and how concerned I was that I might forget something useful.  That doc was not very wise that way, but most Lyme docs understand.  

Above all, don't worry!  Take care, and know that you and your doc are working together to get things sorted out.  Let us know how it goes!  

[JackieCalifornia]

As a great man once said:  be not afraid.  

You will do just fine.  It is normal to be nervous and concerned before seeing a doctor about something out of the ordinary.  Know also that Lyme bacteria use up magnesium in your body, and low levels of magnesium causes anxiety and twitching and being nervous.  It's not something you are causing or doing to yourself:  it is simple a biochemical reaction to the actions of the Lyme bacteria, if my guess is correct.  I've read about lots of people who had similar symptoms, and I had general nervousness and anxiety before I was diagnosed and treated for Lyme.  

When I nervous and jumpy and couldn't talk straight, I would mutter to myself:  "It's not me -- it's the bugz.  It's not me -- it's the bugz" -- meaning it was being caused by the Lyme bacteria ('bugz' as I still lovingly call them -- NOT!)"  The jumpiness and anxiety I had went away entirely after I was treated and the Lyme was gone.  It's just a side effect of the Lyme bacteria using up magnesium in your system.  No more Lyme?  No more jumpiness!

About how to pay a Lyme doc:  the docs often do not want to be paid by the patients' insurance company, to avoid the ins. co. arguing with the doc about how to treat the patient.  Also, the docs keep their expenses down by not having a bunch of billing clerks on the phone and writing letters arguing with the patients' insurance carriers about what is and is not 'appropriate treatment' for a patient.  

My doc didn't take payments from my insurance company, BUT he would give me an itemized bill after an appointment (not very detailed, but good enough to pass muster), and I would send the bill to my insurance company and they would send me a check for most of the amount I paid my Lyme doc.  That way, the insurance company doesn't get in trouble with state gov't regulators who disagree with how the doc is treating the patient; the state regulators can just turn a blind eye to the whole situation; you get treated; the doc gets paid, at rates lower than you would if simply paying the full hourly rate the doc charges, and everybody goes home happy.

Mainly, try not to stress about it.  And about twitching and jumbling up words?  the doc won't be bothered, and it might even help him to diagnose your ailment if he hears how things are with you.  It's a symptom, not a failing in you.  Just be honest with the doc, and he will have a better shot at figuring what's up with you and how to fix it.  The doc is on your side.

Take care, and keep us posted!  All good wishes to you -- !

[Stroud5393]

Thank you so much for responding I hope I can get some answers soon I found some a couple llmds so I'm gonna try and make an appointment Monday. The thing is I hope they take my insurance I've heard you've gotta pay everything out of pocket.... Another thing is I'm terrified that its also because the twitching and It seems like I can't pronounce certain words..

[JackieCalifornia]

     [part 2 is here:]

You say:  "I'm so stressed out that they can't find what's wrong I'm so miserable everyday."  I certainly understand that.  I went through a bunch of MDs too, and none of them had any idea what was wrong.  Then, one of them finally tested me for Lyme (on one of the basic, not-very-up-to-date tests) and IT CAME BACK POSITIVE for Lyme!!!  What did the doc say?  "Oh, you can't possibly have Lyme.  I have patients with Lyme, and they are all ... near death."  Well, how about that!  What a clueless fellow that doc was, and it is sadly not uncommon in the medical community.

[Side note:  I had an old, old friend in another part of the country who had had Lyme some years before, so I knew a little about it, and once I had a positive Lyme test in hand, I went straight to a Lyme specialist, was properly diagnosed and treated, and remain quite well (knock wood) quite a few years later.]

So ... even when a clueless doc makes a diagnosis of Lyme, sometimes even THEY don't believe themselves!  AGGH!!!  This shows the importance of having a doc who really does understand Lyme and believes in it.

You say, "I live in Tennessee and I've heard it's rare to contract it here."  That's what ALL the clueless docs say.  Lyme is pretty much everywhere, even if the ticks can't read maps (and even if the docs don't know a tick when they see one).

I just searched online for    --- Tennessee Lyme disease association ---
and got some very interesting links.  I'd suggest you do that and figure out what doc you would like to see.  Then make an appointment, and go for it!  If the first doc doesn't feel right, go to another.  Remember that all docs who practice in the Lyme field truly believe they are wise and cautious and correct ... but a lot of them aren't, just like the 19 docs I saw before I finally got diagnosed.

If you don't get any good names from the Tenn. Lyme association, then try ILADS [dot] org and their referral function on their website.  HOWEVER keep in mind that there is no test I know of that these docs have to take and pass to be an ILADS member, so if it doesn't feel right, get another name and try again.  Lyme treatment can take over a year, so you want a doc you can tolerate and trust.
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This strange split in the medical community regarding Lyme is very disorienting on top of being ill, but that's just how it is.  We've all been where you are with Lyme, and it's definitely worth fighting back against it.  It's been about 7 or 8 years since I finished treatment for Lyme and babesiosis (a common co-infection that the 'Lyme' ticks often carry), and I am fine.  I wish the same for you!  Let us know if we can help, and also how you do, okay?

Best wishes for a long and healthy future -- that you have already pressed ahead in searching for answers and seeing MDs and getting tested (and finding us!) indicates that you are strong and capable, so my money is on you beating Lyme.  

You go!!

[JackieCalifornia]

Welcome to MedHelp Lyme -- but sorry about all the things you are going through.  Your persistence shows that you are a fighter, and that is a very good thing!  Lyme is misunderstood by many MDs, and it can take perseverance like yours to find your way to an MD who would include Lyme as something to be considered seriously.

There is a serious split in the medical community about how to test, diagnose and treat Lyme and other infections also carried by the 'Lyme' ticks -- once you find an MD who understands Lyme and other infections the 'Lyme' tick also often carry, the whole picture can be viewed in context of what wise docs know:  Lyme is spreading everywhere, its symptoms are different in different people, and the original tests and diagnostic approaches are often out of date, as are the original treatments.  That pretty much covers most of the possible angles, doesn't it?  ... but that's the mess the medical community has made of it all.

What to do?  Understand the split in the medical field, and find an MD who understands more about Lyme that the earlier MDs, many of whom are still practicing and still believe Lyme is rare, hard to get, and easy to cure with a couple weeks of doxycycline.  

However, more research and study by progressive MDs have found that

  -- Lyme is not rare, but has been and is spreading quickly everywhere;

  -- Lyme is not hard to get, because the tiny ticks that carry Lyme are also everywhere and are difficult to see, unlike big dog ticks; and

  -- the original MDs who not so many years ago 'discovered' Lyme are still in practice and insist that their earliest impressions of Lyme and its companion tickborne diseases are still exactly right.

Bottom line:  you are not alone in all this.

Not everyone's symptoms are the same, partly because the 'Lyme' ticks often carry other diseases with different symptoms, which when blended altogether in one person give a set of symptoms that may not match up exactly with a case of 'pure' Lyme.  Everyone reacts differently to Lyme and to the co-infections -- a rainbow stew of illnesses -- and the docs are used to having more consistent sets of symptoms in one patient, but Lyme doesn't play by those rules.

You say:  "For the past year and a half I've been having unusual symptoms everyday" -- Lyme has an array of symptoms that often do not show up in each person the same way -- that really confuses docs who are used to ONE set of consistent symptoms.  Lyme didn't get a copy of the rule book, tho.

You say:  "I have these lightheaded spells that come and go I have heavy head and ear pressure constantly and my ears are always popping my muscle have been twitching everywhere off and on for about 6 months and I've been having these needle-like sensations off and on everywhere for about 2 months" -- everyone is different in their symptom array, but these description are similar to what I have read by others.  The twitching is something I had:  Lyme bacteria use up magnesium in your body, and when you're low on magnesium, your muscles twitch.

You say:  "I'm always in like a fog I can never concentrate on anything" -- it's called 'brain fog' among those of us who have had it with Lyme.  Quite common.

You say:  "... and my eyes feel strained all the time" -- MDs who specialize in eyes [ophthalmologists] are mostly quite up to date about Lyme, and while they don't generally treat a Lyme patient for all the overall symptoms, having an ophthalmologist helping with your situation could be a good thing.  When you find a Lyme specialist to oversee your diagnsosis and treatment, the Lyme doc may know a good eye doc to recommend.

You say:  "... and I'm in pain all the time all my joints and muscle hurt all the time."  This is not uncommon.  Part of it may be (again) the low magnesium levels, as well as inflammation from the infection overall.  I'm NOT medically trained, but these are things I've heard others with Lyme also say.  Be sure to tell your doc all your symptoms, whether physical, emotional, or otherwise.

You say:  "I've been to a PCP" -- a primary care physician, yes?  Sometimes they understand Lyme, sometimes they don't, and if they don't, then I would find a Lyme specialist to oversee my diagnosis and treatment. Any kind of MD will do -- as long as the doc understands Lyme and its co-infections -- but every doc who has Lyme patients *believes firmly* that s/he already knows all there is to know about Lyme and the other infections the Lyme ticks bring along about half the time.  So ... what to do?  It is critical in my experience and in my opinion to have an MD who really truly absolutely understands Lyme, not just a doc who *thinks* they understand Lyme.  More on that in a minute.

You say:  "I've had lists of tests CBC cmp thyroid tests urine tests Elisa and western blot for Lyme RA panel ANA test crp test all that was normal."  The ELISA and Western blot tests are supposed to diagnose Lyme:  if the tests are positive (indicating that yes, you have Lyme), then they are likely correct, and you do have Lyme.  However, if these tests are negative (indicating that you do NOT have Lyme), the tests may be very wrong.  That's why having a wise and enlightened Lyme doc is so critical.

You say:  "I've seen a neuro and had a MRI that was clean and both physical exams were good and I had a eeg that was clean.  I've also seen a GI doc had a endoscopy and colonoscopy which were good besides a colon polyps that was noncancerous and removed. I was tested for Celiac's disease and it was negative."  That's good to know, but to my understanding, none of those results would rule out you having Lyme.

    [end part 1 of this post -- see part 2 in the following message pane]