posted
My mother talked to an LLMD today. We have concuded I do have Lyme (have had it for atleast 10 years, probably more). I am finishing off my last exam of this semester, then coming home to see if i can get a positive test for Lyme. The doctor is positive I have lyme, and is going to see if I respond to abx even if i do not get that positive result on test.
So this is where I am right now... In less than 2 weeks I will be starting treatment. I am not sure what to expect. Both, I, my LLMD and my mother agree to attack this thing full on. I have decided that if I react to abx or get test positive, I am going to do the IV abx. I am SO lucky, my parents pay a great deal for amazing health insurance, so my meds will be covered. My summer will be completely focused on treatment and getting better.
What should I expect?!? I am pretty scared, but even more excited just thinking that all these problems i have had for so long, that i have always thought i would have to live with day in day out for the rest of my life might just lessen up for me!
What should a person expect getting into this? Can you all help me? Its all just too much...lol.
All the information on this site has helped me soooo much. You guys are great!
posted
some people (lucky ones) just start getting better, other (like me) we herx on every little antibiotic or anything made to kill the lyme. You may get much worse wth treatment that is what is happening for me but it may not happen for you, just make sure that when you get off IV to start oral ABX becuase to WILL relapse.
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
My experience at www.BetterHealthGuy.com. If you have specific questions, feel free to email me via the site. Good luck
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Glad to hear the good news for you.
Yeah!!!!
Strange disease....Lyme.
In order to get better, most of us get worse first.
You will probably be sicker and feeling worse when you start antibiotics.
Go under the newbie links and look up Herxheimer or Herx.
There is a very good explanation of why you may feel worse.
Hang in there. It is a tough road to go down, but at least you are going
In the right direction.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Glad you have a llmd and are getting treatment. Also glad you have good insurance.
Like others have said many people feel sicker before they get better.
For short we call it a herx
Basically when more bacteria dies then our system can clean out it makes us kinda toxic and so we can have the severity of current symptoms increase and/or old symptoms return and/or new symptoms show up.
Please don't let this scare you. It can be tough but herxes always get less severe for me the longer I am on a abx.
It is different for everyone though. Some people's herxes are mild and some don't herx they just get better.
posted
Congratulations on starting your road to getting better!! I know that might sound strange but it's such a battle for most to get a doctor to listen.
I have had LD since 1996. I was only dx'd last year. Before that I was told MS...that's a whole other post.
Anyway, you may get worse before getting better. Many people here herx like crazy. Since I had been infected for so long without treatment I thought I would have major herxes too. Only one abx..Tetracycline..made me feel that way.
Other than that I was able to tolerate all the different combos of abx. It's a slow battle but you can get better. I noticed many differences in just a few months..other symptoms can take alot longer to go away.
I have an appt. this Friday with my LLMD. We decided to take an abx break since February and I am currently relapsing. It's not as bad as it was before though and I am planning on kicking some spirochete butt!!
Hang in there. I love this board too!! It has saved me many times.
posted
It is so true that half the battle is getting a doctor to listen.
I went down the mis-Dx road as well. The first doc had me scared for my life when he said that I had MS, prior to even examining me. YIKES!
The road to recovery is a long, bumpy one. If you can keep in mind that when you feel bad, that is a good sign. That means you are killing the bugs. It's soooo hard to keep that in mind when you feel terrible, but it's a key to keeping moving.
Sometimes you need to come here just for words of encouragment, or reassurance that others have gone through a particular symptom and can tell you that it does go away. It wont stay FOREVER. Thank God for that!
I'm glad that you got a LLMD that can help you. Keep in mind as you move forward in treatment, that it's going to get worse... but what choice do you have? Take a deep breath and go for it! Others have done it and been successful. So can you.
While you go through it... come here often so you can get support from us... the people who are going through it right along with you.
-------------------- 26 months of treatment. And counting....... Posts: 298 | From Northeast Kansas | Registered: Oct 2006
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posted
Thanks guys! It has taken me so long to finally find out what is wrong with me. (for what seems like) My whole life i have been struggling with crippeling pain in my joints. And other bad problems. It was only last year I got the idea to look at all my problems as one big problem. That is when I realized I probably had Lyme. Doctors could never offer me any help untill now. Such a relief to have people finally understand me, my pain and whats going on with my body.
I know all about the herx stuff. I love biology and med study, lol, a little hobby of mine. I'm weird, and I dont think i can pass that off as a symptom of lyme, lol.
Right now I am kinda concerned about IV abx. I don't know which ones I am going on, and I have no idea what to expect. IV stuff kinda freaks me out. I can watch a surgery, yet the idea of something in my vein makes me sick to my stomach.
I don't know....
Thank you guys so much for the help! I know this is going to be a lot easier because of lymenet and all the wonderful people on it.
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
It's great that you have parents and a doctor who want to treat this full-on. You mention being bothered by the idea of having an IV. Some LLMDs at least start people on orals to get a sense of how bad the herxes are going to be.
In my case, I had been undiagnosed for 10-15 years and a starting dose of just 500 mg. of Azithromycin per day pretty much got me bed ridden for a few weeks. As the herxes eased up, we kept adding more zith and then added Bicillin LA with a gradual build up (Once a week for four doses, then every six days for four doses, etc... until we got up to three times a week). Bicillin seems to work well for chronics like ourselves. It worked. At some point we swithched from zith to Biaxin. That's where I am now. The meds are part of my life but msot days I am symptom free.
My point is, there are a number of ways to go about this and no one really knows what approach is going to be most effective, especially considering individual difference, various strains, co-infections, duration. Good luck to you.
BTW. I used to live in Tampa and know quite a few of the doctors in various specialties. I worked at the university and watched them be raised. A few are great and a lot of them are total pri---.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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