Possible Lyme Disease- New to this

This is all new to me... hours NEW, so I'm sorry if I'm a little ignorant on the topic.  I've spent all day reading, so I think I have some base knowledge, but I'm currently in a waiting game, which is awful.  

I've had a rough year.  My house burned down in a wildfire last August.  My son was born 4 weeks later.  I got Bell's Palsy 6 weeks later.  And two weeks after that my nervous system started freaking out, causing me to have dizzy spells, my hands and feet to go numb, pins and needles sensations, shooting pain down my arm, and (to make it really hard on the doctors) my joints hurt, especially after lying down.  I went to the ER several times because all of this freaked me out, and they blamed it on anxiety (I've been anxious, sure, which didn't help!).  I went to one neurologist and finally got him to at least do an MRI, which was normal.  He told me he didn't know why I was dizzy and we probably wouldn't ever know.  That was that.  It took until now (nine months later) to get into another neuro.  

We don't live in a LD prone area.  There has never been a documented case of LD from here (only brought in), but I have traveled to a lot of LD areas and grew up back east.  I was bitten by a tick at summer camp when I was 9 or 10 (I'm 27 now).  The neurologist wanted to rule LD (I've asked for this test since the Bell's Palsy).  I woke up this morning thinking I needed to call them since it's been 1.5 weeks since they drew blood.  They called me first.  

They said that there was an "unusual titer pattern" with my test and that they wanted to repeat in 4 weeks.  After some prodding I found out that my IgM came back positive and that my IgG came back negative and that they aren't completely sure if it's LD.  With the repeat draw I'm not sure if they are just doing the IgG/IgM test or if they are looking more indepth for the 10 types (like I said, just learning about all of this).  

I hate the idea of waiting another few weeks for a yes or no.  Granted, I've been sick for months, so what's another few weeks, but I feel like I'm in limbo (and I've been completely unproductive today).  While I don't *want* Lyme Disease, I do want an answer to why I feel like ****.  And I want my family to stop thinking I'm crazy and a hypochondriac.  

I've read a few places that a positive is a positive.  What is the next step after the repeat test if it shows the same?  There are no LD drs here because no one gets it, so I'm going to need to travel to get treated (or to create a plan to coordinate with my drs here).  Thank you for any help.

[patsy10]

Your symptoms fit and your test is positive.  You probably had the ELISA test and the second test is likely the western blot. I think seeing a lyme specialist is a good idea.  Read as much as you can on lyme.  There is information in the health pages here at the right hand corner.

There are many false negatives and few false positives.

[gorbybelle]

Hi, your symptoms - esp. with the Bell's Palsy too - sound a lot like lyme - if I were you I would locate a 'lyme literate medical doctor' {llmd.} -as 'Patsy10' suggested.

It seems that lyme can lay dormant in our bodies - sometimes a stressful event can cause it to show it's self - possibly because when we are under a lot of stress our immune system isn't able to 'work' as it should.

Many folks here have been called 'hypochondriacs' !! - I guess partly because we can 'look' pretty healthy and the waxing and waneing of symptoms  mean we can function fairly normally  - some of the time.

With all that you have/are going through - it's not suprising you are 'anxious' also 'anxiety' is listed as one of the many possible lyme symptoms.

Best wishes - you will find plenty of help and good advice here.

Gorbs x

[Hope75]

Your story is similar to mine.  I had three tick bites at age 11 and my truly bad symptoms didn't start until I was 30/31.  Looking back I had some symptoms prior, but attributed it to other things.

I also had a positive IgM and negative IgG and was also told it was unusual.  I have burning, prickling, fatigue, dizziness, tinnitus - its terrible.  But, it comes and goes, so hopefully yours will abate soon.  

I've also been called a hypochondriac.

I've also been told it's all from anxiety.

It's BS.  Period.  Try your best to get to an LLMD.  I believe the ILADS site has a physician finder.  I assume you are on the West coast?  Ask your docs there if you can have a prophylactic course of antibiotics.  I'm not a doc, but perhaps that would be in order since they think your tests were "strange".  I would err on the side of positive and say get some abx started, if I were a doc:)

Also, I've noted alot of women manifesting these symptoms right after giving birth - it has to have some connection.  Also, you may want the baby tested, not to scare you, but some think it could be passed in utero, others dont.  

Keep us posted, please.  The people here are great and supportive.  You will find here that you are not alone.  Take care and I hope you feel better real soon and sorry about your house fire.  That is very stressful, been there, done that too.

Hope

[BHealthyNow]

In the last 24 hours since getting this news I have already learned so much.  I had them fax me my results.  They actually did the Western Blot, so the IgM is positive on that, and it looks like the IgG was positive for 3 but not 5 bands.  All of my doctors sound so confused, and that's ok.  At least they got me this far (and that's a lot further than my previous doctors this past year).  We are currently looking for an LLMD in WA or CA because there are none in our state.  

And we are planning to discuss with our pediatrician on Monday and get testing for our son IMMEDIATELY.  

My family wants to wait for the second Western blot.  The doctors are expecting the IgG to show up positive, though I am skeptical that will actually happen.  My dad likes thinking I'm a hypochondriac, so he is really dubious about this result right now.  But it makes so much sense when I read about the symptoms.  If I were a dr. I too would put me on abx immediately while we wait, but sadly, I don't have a prescription pad.

[margypops]

Reading this sounds like my story ,I too wake feeling awful, aches and pains, but after an hour or so I feel okay, thats the bit I dont understand how come lying down affects us, I have heard this from others ..any ideas about this , I am still undiagnosed after 20 years ..

[margypops]

PS mine came back after a dental trauma, major work that went wrong...I have heard having a baby can cause it to reoccur as it is a physical trauma , even if its a happy one. I do know that some folks are treating themselves with anti biotics they obtain. Okay I am not saying you should do that but I do understand their frustration, I did hear that vet Doxy is available

[BHealthyNow]

I think I have some Amox-Clav left, but I'm not sure how effective that is.  I also don't know what that will do to my blood results.

[mrs_k75]

My story is a lot like yours and I am sorry that so much happened to you recently. I was bitten by a tick with a bullseye rash back when I was about 12 and I am 33 now. At the time, I thought it was a typical bug with the weirdest looking rash and I thought nothing of it. I never had problems until I was in my 20's and it was after I had life upheavals. It would go away and then it came back after my car accident in 06. Went away again and then came back about 3 months after having my daughter. I have been diagnosed with all kinds of stuff stress, MS, RA, it's in your head take some IB profen and you'll feel better blah blah. It is important you go to LLMD. Thanks to this board I realize the importance of going to a Lyme Literate MD and it turns out there is more testing out there and they better at detecting symptoms and reading test results.

[JackieCalifornia]

There are sometimes LLMDs in your area that you just don't know about till you google about a bit.  LLMDs keep a low profile to avoid harrassment by the MDs who don't 'believe' in Lyme.

Lyme is everywhere, even if the 'official' maps don't say so.  Ticks apparently aren't very good at reading maps and tend to go wherever they want.

Hang in there.  Check the ILADS website for referrals, also just google for your geographic area and "LLMD" or "Lyme" or something similar.

[BHealthyNow]

Thanks.  Found out will need to travel out of state, but there are doctors within a short plane ride.

[skarey]

I too, started showing symptoms about 2 months after the birth of my second child.  Don't know if I was infected then or prior (as I've had several tick bites, and found many crawlers on me).  

It sounds like you got you are on the right track to getting treated.  Let us know how it goes.  

Good luck.

[Mazola]

I posted this elsewhere but I will repost it as it really appears that I have seen the same symptoms. I am finally just starting treatment for LD and have had terrible problems with pain in my chest and back as well as dizziness while driving. People looking at you like you are crazy is something I'm well aware of too, "You have how many things going on with you"? haha

I would like to list the issues I've been facing and see what the general opinion is. I have seen a Neurologist, Back/Spine and Pain Management Specialist, (2) PCP, Ophthalmologist, Orthopedic, and Physical Therapist with minimal answers.

History: I have had viral Meningitis, Bell's Palsy, Hypothyroidism, Costochondritis, Fasciitis, Dizziness/Vertigo while driving, random tingling/numbness in hands, feet, lips, and nose, burning or irritation in ears, anxiety due to the Costochondritis, and sleep apnea. I've been involved in 4 accidents where the vehicle was a loss (always the other person's accident/citation) but with only whiplash for injuries. I've also had at least two embedded deer ticks.This has all happened in the last 10 years starting with Meningitis.

I have had endless test for a variety of the above issues but have felt that something ties them all together but no cooperation from the doctors. I've recently switched my PCP and she feels that I have chronic Lyme's Disease, which certainly fits the symptoms. I am two weeks into Doxycycline treatment that will last a month and will follow-up from there.

Please tell me what you think. Does this sound reasonable? I have a baby coming that was due on October 1st and it scares the heck out of me that I am in such bad shape right now and really have been since the beginning of this year. Thank you immensely in advance!

[BHealthyNow]

It definitely sounds like it's possible.  Did you get a Lyme test (through any lab)?  It sounds like your PCP is knowledgeable, and you are being treated.  

Good luck with your baby.  I hope you have family support because that's a lot to deal with in a short time.