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Posted 4/1/2011 3:32 AM (GMT 0)

     Hey,

       So, for nearly 3 years I've been passed around doctors like a bag of candy. Seriously, I've seen over 30 of them (counting the five who out-right took my money just for a visit to say they don't know what's wrong with me). So, I'll bore you all for a moment with a quick recap of everything:

   I've lived in South Florida for my WHOLE life. I've never EVER been bitten by a tick. Since, four-five years ago when I had a cyst rupture, I've been extra careful with my body, etc. Anyway, my symptoms don't seem to fit in with lyme...

It first started with pain. Sudden, severe onset of back pain. Just back pain. From my shoulders to lumbar, there's pain and no where else, like abdomen, neck, etc. I saw just about every doctor possible and every scan, test, etc. is normal.

Well... this past January, the whole game plan has changed. Usually, I don't have bad (if at all) memory problems, fatigue, or any things else. Then, BAM! Vision in my right eye decreased drastically, found out I have atrophy, I can't recall information, so I'm now failing all of my classes in college. I'm an excellent student, so one class I can understand, but not all of them.

In addition to those things, I'm extremely fatigued. I can hardly get out of bed due to pain and exhaustion.

Well, before this all started, I was a martial arts instructor and a top competitor in my state. Needless to say, I soon had to drop it. Pain was just so horrible. That and my other part-time job too. Doctor says I can't work. It hurts too much to stress or exercise and that's my life.

One problem with all of this is that "I'm too young to have these problems". But yeah, for 2 1/2 years my symptom was only pain.

Now, to the interesting part. Evidently, my prognosis is down to: Lupus, LD, MS, and Fibro.

Lupus: my ANA is 1:80 / 1:40 and speckled. Really, my aunt has lupus, but I highly doubt I do.

LD: I'm positive for Western Blot. But, I've never been bit and I'm nearly hypersensitive to those sort of things. Do ticks even come down to south Florida?

MS: because, like Lyme, my symptoms... sort of fit... I guess. No lesions, though doc says I may be one of the 5% without any.

Fibro: Because of the pain? I'm super sensitive to touch, so no one can hug me. I once blacked out for 20 minutes because of a single pat on the back at Christmas.

Well... my question is... can I have Lyme without being bit? Really... I didn't have any flu like symptoms... only pain. I'm not sure... what do you all think?

Really... I'm ready for a treatment, because I feel like my life is spiraling out of control quickly now.

Thanks.

Posted 4/1/2011 3:46 AM (GMT 0)
Positive Lyme WesternBlot should tell you that you need to be evaluated by an LLMD - only they are trained in how to properly interpret your test results and symptoms to determine whether or not you have Lyme.

Ticks can be as tiny as the period at the end of this sentence. Not everyone is aware of being bit. Yes, Lyme is in ticks in Florida - it is in ticks nation-wide. Not everyone with Lyme gets the "classic" rash or flu-like symptoms. My Lyme started with wandering leg pains.

Make a separate post asking for help finding an LLMD in Florida...I'm sure someone here will offer recommendations.

Good luck & take care,
Posted 4/1/2011 4:15 AM (GMT 0)
Well, he is an LLMD, that's the thing. Now I'm being sent to another LLMD, who's actually the director of the whole department in a reputable hospital.

Oh, and the ones positive are p23 and p41.
Posted 4/1/2011 10:30 PM (GMT 0)
Hmmmm. This disease is so baffling, nothing would surprise me. Be very aware that this disease is a still a mystery. Everyone is affected differently. I have had for possibly 10 years and have barely missed a day of work (work 5 minutes from home and part-time). I'm not saying it has been easy by a LONG stretch but some get extremely ill extremely quick so there is just no way of knowing. Have they tried running co-infection tests or re-running the lyme test thru Igenex? Have they tried antibiotics to see how you react? My symptoms came on gradually and then WHAM the anxiety! The best advice I can give you is to research, research, research. Nowadays with the availability of the internet, you can get so much information, especially on this site. It has truly been a lifesaver for me. I'm sure if you search, you will find someone with a story like yours. Best of luck to you and keep us informed.
Posted 4/1/2011 10:37 PM (GMT 0)
Yes, ticks like to vacation in Florida too :)

Seriously, yes they are here in Florida, I too live here and never ever knew I was bit either.

Make sure you have a real LLMD, as far as I know there are none in southeast Fla. and one in SW Florida, but I would be careful with the one in the Naples area.
Posted 4/1/2011 11:02 PM (GMT 0)
Haha, yeah. I'm nearest to Shands (so, more like North Florida now, because I moved back in Aug 2010), so it's pretty good (go in May). The test they sent was to Igenex and everything was negative for co-infections (looking at the report now). I'm afraid that my new doctor in May will just repeat it, but probably for the best.

Research has blown everything wide open lol. But, I'm on doxy right now, tho no outward effect. I've had trouble will pills, since they don't make any of my symptoms decrease at all. Hopefully by next week (on the 1st week of 2 weeks dose) I may get something back. That'd be a shocker for sure!

So, yes, I'm anxious for ANYTHING. Though, I wonder what type of medication is available in shot-form. I found that it's effective 95% of the time. Btw, how likely is it for Lymies to get the eye problems? Seeing an ophtomologist on Wednesday and I know that it's a symptom of MS, but Lyme too?

Gah, I'm still stuck on the whole "It could be any of these four things, we just have to rule them out" prognosis. I took a week's worth of steroids in January (before everything else came out into play)... I wonder if that had anything to do with it.

Anyways, you all are very helpful and kind. Thank you!
Posted 4/2/2011 4:57 AM (GMT 0)
Hi, I had optic neuritis before I was diagnosed w/ LD. Incredible pain in and around my eye, a blind spot, and flashing lights in that eye. Yes, they thought it could be MS.
Oh: did you know that ticks carrying Lyme have been found on seabirds .... in Antarctica??? The Lyme bacteria has been found on every other continent, as well. Makes me laugh to think of the MDs who have told me that "we don't HAVE that here in Alabama". Ha !
Posted 4/2/2011 4:35 PM (GMT 0)
WOW! That's interesting... I kept researching and it makes more and more sense that MS could just be Lyme (not for all but you know).

So, okay, it sounds more and more like it is definite Lyme (before they do more tests probably).

What kind of treatments work best then? I know everyone is different, but I'd like to hear about the injections mostly. (This way, maybe I can save myself the hassle of paying for meds that won't have the effect I want).

Thanks again! I love crazy stories :)
Posted 4/2/2011 10:59 PM (GMT 0)
I live in No. Fla too Slayer. Not sure who you found at Shands and hard to believe some LLMD there.

There is one..where we live that will do IV...Email me if you want the name.
Posted 4/4/2011 12:06 AM (GMT 0)
Hi slayer and welcome!

Ticks have a numbing agent so most people don't even know they were bit and the length of time means nothing..  It only takes a few seconds for the tick to inject the bacteria..  Also, ticks are not the only blood-sucking vector that carry lyme bacteria.  The "real" host of most lyme bacteria is the "white-footed mouse" and any vector that feeds on these mice then carry the bacteria.

Anyway, I also saw an endless amount of doctors who gave me "labels" that just didn't fit or the famous saying "there isn't anything wrong with you"..  But we know our bodies the best.

Ask questions, read books and articles, and become your own advocate..   As I said we know our bodies the best and whatever you do, please start detoxing as that will get rid of the poisons in your body (instructions are listed in the Sticky Thread called "New to Lyme?  Start Here!"...

Good luck and hang in there,

Denise

Posted 4/4/2011 12:56 PM (GMT 0)
Hi Slayer,
I wanted to address what you said about the abx you are on. You said you were on a 2 week dose. May I ask why only 2 weeks? Is this because of the retesting that your doc wants done?
Posted 4/4/2011 3:12 PM (GMT 0)
Hi all,
I read all the posts and yeah, it makes sense about a lot of those things especially my eye problems. So, my LLMD in Florida, is not originally from Florida. He's only been here for a few years and came from somewhere in the upper east of US. So, that may explain his awesomeness... that and the fact that he's in his late thirties and more open is very helpful.

I'm only on 2 weeks, because although he believes it's Lyme, he wants to have the re-testing done in May by the Shands people (he's in a private practice) and have them clinically treat me.

My guess as to why would be so that I could get the injections, since his practice doesn't have the equipment and such there. It worries me a little that they're going to do the re-testing, especially if they're going to send it to Igenex again. But, it's not a big deal.

So, my research has led me to believe that I in fact do have Lyme ( since the ANA can be explained ((my doctor also said not to worry about it, but I do lol)) as can the MS-like symptoms, and the severe pain).

All in all, this is what I wanted (info and a possible DX). As for the detoxing... I'm a little apprehensive. I did read the "New to Lyme" thread, so I understand it, but I've never had good experiences. But, I have to ask about the diet... I can't drink water. I mean straight water, flavored water, or anything like it. My body rejects it due to the taste (not to say that I don't need it, because I do). I have other ways of getting it, but yeah. Sugar, carbs, bread... basically everything on there is my diet. When I was younger, my chiro said to stay away from dairy and sugar... yeah... didn't happen.

It's not to say that I don't WANT to get better, but it's hard for me at this time. I just don't know how I'm going to do it.

Aside from that jumble of stuff, how much doxy is considered effective for treating Lyme (assuming that I have it chronic for 3 years now)? How do you find time and are able to start detoxing? And really, what are just some things I should look out for?

Much appreciated :)
Posted 4/5/2011 2:51 AM (GMT 0)
Rita- thanks for the tip! Although I'd really like to start now, I'm nearing the end of my semester. Possibly during the summer I'll be able to do it, but it's hard when life gets in the way ;)

Yeah, well, unfortunately... I've now become even more skeptical of the so-called LLMD from Shands.. I've read up on the treatments and such and it looks like they believe in the "take 28 days of medicine and you're cured" route. Not sure, but I'll let you know later. My primary, who's very LL, can't prescribe the medications (stupid center he works for). So, I'm wondering, for back-up purposes, if anyone knows an LLMD near North Florida? Preferrably one with knowledge of Neuro.

Thanks!
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