Lyme Disease Support Group

So I asked him what does it mean if I am still having symptoms and he suggested that I see a rheumatolologist because maybe there was something we were missing. I mentioned to him how I feel like I keep getting swollen and asked if this could be a symptom of the Lyme. He said yes, but that is with chronic Lyme, not with the early stages, like I had. So he still is convinced I was in the early stages and now I am back to thinking this is all in my head.

So, can you be cured of Lyme and still have symptoms?

Does anyone know what to expect when going to see a rhematologist for the first time. I am so bad with talking to doctors. I want to be prepared.

Oh, and since I was on those antibiotics for three weeks, I now have a new symptom. My spine hurts so badly. It feels bruised. Sometimes it travels to my lower back, and last week my lower back was visibly swollen. When that relaxed a bit, it was in my rib cage. It was all tender to touch. Now it's back in my spine. It hurts the most when I get out of bed in the morning. I am wondering if I injured myself, is this the Lyme, or do I have some other illness that I should be worried about.

It's amazing how fast a doctor telling you that you are cured can make you feel like it's all in your head again.

Post edited by: sosotired, at: 05/10/2009 06:11 PM

Christi

Excuse me for the moment - as I am very ill and running a high fever...

BUT if you believe that kind of CRAP - you will be sick for the rest of your life!

The ONLY REMOTE possibility of cure - is to start aggressive treatment the same day as the bite - for AT LEAST 3 months...

READ the complexities of Lyme from the Lyme Facts section...it will easily explain why this is so...

In 10 days the bacteria is in the brain and eyes...

Your new symptom I would say is because it has found a new place to live within you...

After more then 12 yrs STRAIGHT of abx I was NOT cured - nor was I close to CURE...

Is this an LLMD that is telling you this CRAP? IF so I would like to know who he is so I can make the appropriate notes...

Early Lyme is NOT curable with 3 wks of abx...JUST NOT POSSIBLE - remission - yes...

Just because the test is negative doesnt mean a DAMN thing...

PM me for a new doc who will treat you accordingly...

This kind of BS really pisses me off - and with a raging fever right now I am rather cranky - so sorry for the harshness..

IT IS NOT IN YOUR HEAD = YOU HAVE LYME FOR LIFE!!!!

Be prepared for the rheum. to tell you its something like bursitis or order up MRI. I have bulging disks and a herniation. The pain isnt from that. Its different. I was told I had, bursitis, osteo arthritis, fibro, restless leg and the list goes on.... Can we say LYME ? My doc is a good guy and I like him but there will come a time when we part paths and I seek an LLMD if I dont improve significantly more.Better but not great

I had knee surgery in feb. and the surgeon said I was good on the arthritis for my age.

I am not seeing a LLMD, this diagnosis came from a new primary care doctor who I really get a good vibe from. I want him to be a good doctor for me. To some extent, this is my fault because I don't speak up. Even during that phone call, I had to force myself to say that I still having symptoms. I have yet to say, I don't agree with him about being in the early stages. I don't know why I am like that. I don't have a problem verbalizing concerns when it comes to anything or anyone else. When I see a doctor, I get so agreeable, I'm working on that.

Toothfairy, I don't remember being bitten, but I can think of two times in the last three years that could have been the onset to all this. The most obvious is a strange rash I had while I was incredibly sick three years ago. It was VERY weird. It was a circular rash, but didn't look like a bullseye or any of the pictures I have seen of them. We ruled out Lyme quickly because it didn't look like Lyme. I searched all over the internet for any explanation of what the rash was, but found nothing. It started off in one spot on my belly. It was a tiny splotch that expanded out into a hollow ring. It wasn't raised, and could have been ringworm, but didn't look, or act like it. What made it so weird was that they began popping up in a symmetrical pattern on my upper body. If it was on the left side, it then popped up on the right side in the same spot. None were in the middle and they definitely were not contagious. They went away after a day or so with no treatment. I was so sick with a horrible cold at the time and took a allergy medicine I had never taken before so just chalked it up to being a reaction to that. I never saw a doctor. Anyone ever hear of such a thing, because I still do wonder about it all these years later.

A piece of me thinks that could have been the onset. This all occurred after my boyfriend and I moved into a basement apartment of a house. The previous home owners kept their dogs in there and I was all over that apartment cleaning like crazy.

About a year later, my immune system seemed to go downhill and I do remember a time when I kept running these fevers and felt like I had the flu. The fevers would not go away no matter what I took. I was sick for about a week. Then I got healthy for about a week and then it all came back for about a week. I remember it was around this time, that I first started complaining that I felt like I was getting stupid. No one really took me seriously and chalked it up to me working to much and getting older. I now know, this was brain fog.

My immune system literally diminished after that and in the last year, I couldn't seem to fight anything off. I was thinking those fevers could have been the onset as well.

I have had so many weird things going on with me for so long that I have a really hard time believing it isn't all related to Lyme.

I want to talk to the rheumatologist about all this and hope he will listen. I worry about those bursitis, arthritis, injury type diagnosis because until I had the Lyme diagnosis, no one took me seriously based on me being a fitness instructor. I was complaining of muscle fatigue and body aches and of course family and friends just figured I was working out too much. They said I was sick all the time because gyms have germs. The funniest part of all this was my old doctor, who I disliked wanted to prescribe me an antidepressant because I told him I kept getting headaches and just didn't feel right. (Cmany, that is one to get mad about!!!)

This new doctor I am seeing was the first person to actually listen to me and agree that I have been in the gym field so long that my immune system should be incredibly strong and not the other way around. I also work with children, so I literally am surrounded by icky germs all the time, lol.

I do think this doctor is a good doctor and am happy that he wants to investigate further, I just worry about my weird inability to not speak up for myself and that the rheumatologist will be like a dead end to any possible treatment.

Nope not in your head...

I saw a rheumatologist Dr. She was very good, she believed all my pains etc where indeed from lyme...But you have to understand, I was bitten got sick within a week and started treament ...My Dr. did send me to the rheumatologist Dr. to help me with the pain I had from the lyme, which she did...She did run a lot of other blood tests to make sure "nothing else" was going on, but she did say "Lyme is causing the neck, knee pain" I was having...I have been very lucky with Doctors regarding my lyme and I thank my lucky stars for that...

I never got a rash, but did pull the "Bug" out of the back of my neck....

Make a list of everything you want to ask before you go...Make a chart of all your sympthoms and rate them 1 to 10, 10 being the worse and bring it with you...I did this everyday (made the chart on excel) and my Dr. had me fax it to him every friday, when he saw something not right, he would call me into the office.

But try and write it all down, make a copy and hand him/her the copy to go over with you...I also bought a small tape recorder to bring into the office with me, as I would forget what they said before I even walked out the door, it was all overwhelmeing to me at the time.

And by all means if you don't like what they say, or if they say "ITS IN YOUR HEAD" FIRE THEM ASAP...I had to do that with my allergist that said "YOU ARE NUTS, YOUR LYME IS GONE AFTER 30 DAYS OF ABX's"...

At the moment I am in remission (but still have problems, but small ones) that I can live with...And I still use my chart everyday, its like taking a pill in the AM for me...

I wish you the best of luck

Julie

How long after your 3 week of antibiotics did they test you, because if it's too soon the antibiotics will through off the results and give you a false negative. Believe it or not the same thing happened to me, I finished a 4 weeks course and tested negative, so I marched right back to the doc and told them that they are going to retest me again and make sure it was the Western Blot IGM and IGG. And sure enough it came back positive, Lyme is nearly impossible to get rid off, you can take lost of vitamins and herbs, and the right diet and you can get some of your life back. Just take it easy and watch what you eat and make sure you get plenty of B-12, Magnesium, fish oil and muti-vitamin to start.Plenty of use on here follow natural protocls sice it is very expensive to be treated by a doc and that is if you can find a doc that will listen.