newbie!

Hello, I was diagnosed August 2009 with Lyme disease.  After a second occurence of acute onset of joint pain (the first was about 5 years ago), my GP gave me a blood test for Lyme which came back positive.  Since then  I have been prescribed 2 weeks of doxycycline, a month of amoxicillin and started a 60 day round of ceftin, but had to stop due to an allergic reaction.  Currently am 35 weeks pregnant with twins, so my ID doctor tells me we are limited in what we can do while I am pregnant. 

I have read some of the threads and the "new to lyme" posts and am wondering am I going to have to live with this for the rest of my life?  Since becoming pregnant, I've had 4 flare ups.  One right now as I type.  Before I thought the flare ups (joint pain in all of my joints, usually migrates around my body), but now am wondering if I have been living with symptoms and just not knowing it's from the Lyme.  For example, I am always tired, always have allergy problems, and my right knee has always bothered me.  I've had my knee xrayed and there's no injury or damage...

Anyway, I have no idea when I contracted the Lyme.  My first onset of joint pain was about 5 years ago and then nothing until last august, and the same all over joint pain came back.  Until 3 weeks ago, the pain would come w/ no warning and stay for about 2 weeks.  Now it seems to come more frequently but lasts a few days (hopefully). 

Questions - is that normal?  I can't take anything now for the pain b/c I am pregnant, so I just live with it.  I've heard of Dr. J. A. at John's Hopkins and hope to get an appointment with him after I have the babies. (I live in a DC suburb, so referrals would be helpful)  Will this get worse?  I don't know what to expect?  Can you be cured of Lyme?  I keep seeing more severe symptoms and people discussing how their joints are permanently damaged and am very worried.  Plus, how am I going to deal with this pain coming on w/o warning and trying to raise twins?!? 

Thanks for listening, I realize my post is long, but haven't ever "talked" to anyone else who has lyme.

Post Edited By Moderator (CajunGrl) : 6/16/2010 10:19:10 AM (GMT-6)

Hi NewToLyme,

Welcome to the forum! You should definitely be on antibiotics right now to prevent your unborn baby from getting Lyme. Amoxycillin is usually prescribed when someone is pregnant. You definitely need to see a Lyme Literate Medical Doctor to get the right treatment NOW, and after having the baby. You cannot be cured from Lyme, but it can be put into remission. The important part is seeing a doctor that knows how to treat this.

newtolyme,

Two questions.

1. Why are you not being treated by a Lyme Literate Medical Doctor (LLMD)?

2. Who told you that you cannot pass Lyme disease to your baby?

Lyme disease can indeed be passed down from mother to baby. http://www.diet-and-health.net/Diseases/lymediseasepregnancy.html This is why you need to be treated by a LLMD because, as much as you may like your primary care doctor and your ID doctor, they're not qualified to diagnose and treat Lyme disease.

Your best interests (and the interests of your unborn baby) would be better served if you were treated by a LLMD.

Sorry to hear about all the suffering you are going through.

Gary

I trusted my infectious disease doctor too. Biggest mistake of my life. Be very careful. If you know anything at all about lyme, it is that infectious disease doctors do not believe in long term lyme infections. Do some research. Lyme is quite controversial thanks to the infectious disease doctors. It is quite a scarey disease and if you have it for a long time, you will have quite a battle getting rid of it. Be your own best advocate.

Gary, I do not use Microsoft Outlook (when I click on the email link it wants to open Outlook), and I do not wish to use my personal email. If you could please post the name of the doctor who you are referring to, and the websites, that would be very helpful.

why so secretive? that is sketchy to me.

I think the important thing is that you are comfortable with your doctor and trust the answers she gives you. I think female doctors in general are much less likely to get defensive when asked about treatment plans. She has been treating you on and off for 5 years? This is far more time than most ID doctors would ever treat lyme. Maybe she is thinking outside of IDSA's box.

You have to understand that most people on this board and others who have been treated for lyme by an ID doctor have been given the boot after a month. Most people went years before somebody properly diagnosed them and when they were diagnosed they were not treated adequately.

One question to ask her is if she will ever test for co-infections (bartonella, babesia etc.). This could be one reason you are not improving.

I was just diagnosed in January and know I was very hesitant to trust all that I read. I made up my mind that as long as a doctor takes insurance there is nothing to lose in getting a second opinion. I was lucky to find an LLMD in the Maryland area that does. I am much improved but still on treatment since.

Lyme and co=infections are not like cancer or an Infectious disease like HIV with regard to testing. Gary gave you an excellent link, read as much as you can. Then you can make up your mind as to whether you are getting adequate treatment.

Lyme is no picnic and with little ones running around you want to be sure you are in the best hands possible. There are so many experienced people on this board, don't hesitate to ask questions...someone will reply.

Another really good place to read is canlyme.com/

They also will send you a LLMD referral.

You do need to be skeptical - but most abx doses given for 'common' infections are not strong enough or given for a long enough period of time to rid the body of a tick-born infection. That's why, after 40 yrs (yep, literally) I still need treatment. I have been on a whole lot of abx over my lifetime - I was not very healthy as a child or young adult, & now as an "older" adult - colds, flues, tonsillitis (several times a year), infectious mono (4 times in 1980), bronchitis and so on. I have been on lots of abx's - none of them strong enough or given for a long enough period of time to do anything for the tick-born infections that I was carrying.

As for the "why now?" & "why a LLMD?" part of your questions - tick-born illnesses will wait very patiently for your body to be under just the right amount of stress, so that they can be assured of the possibility of replication before they "come out to play". After the death of my previous hubby, I had a total "meltdown" with my health - I was a complete mess. I managed to get in to see a qualified LLMD & finished what was supposed to be only the 1st round of abx & despite not having the ability to see that same wonderful LLMD (he passed away) to finish what would have been the rest of my treatment, am doing quite well.

You will however have to take control of your own healthcare, so that is why most of us tell you to read. Knowledge really is power for a "Lymie".