How do you know it's still Lyme or ever was? Do any of you ever have doubts? I was diagnosed with Fibromyalgia and in doing some research (I had never heard of it) came across the articles, etc. stating that many FM cases were actually misdiagnosed Lyme Disease. I did some more research.

I was tested through the lab my insurance uses and the results were IgM positive and IgG negative. I was referred to an Infectious Disease doc and was told that if I'd been exposed a few weeks before, I MIGHT have LD but since I was telling him I'd had symptoms for quite a long time, then it was not a positive test. I then sent off for the Igenex lab work and tested IgM positive and IgG negative again. I saw an LLMD and was diagnosed with Lyme based on the specific positive bands on both the IgG and IgM results and on my medical histor.

A year later I started treatment with IV Rocephin (3 months) and showed quite a bit of improvement the first month I was treated, my brain/thinking became much clearer (like a curtain had lifted) and my skin wasn't as ultra-sensitive, but I stopped getting any better after that. I was then rx'ed Biaxin/Amantadine and had a reaction to both and couldn't continue. Lately, I've lost whatever improvement I'd made in my cognitive function. The LLMD I see has been disappointed that I've failed to improve any more than I have but says there is a new med coming out soon that holds a lot of promise in treating Lyme.

My question is this - at what point do you accept that it might not be Lyme and try to get comfortable with FM, or whatever has been diagnosed??? Move on. I know that not everyone with symptoms of FM has Lyme Disease but there must be an answer somewhere. How do you know for certain that you've been correctly diagnosed with Lyme Disease - beyond a shadow of a doubt?

I'm very discouraged and don't have anywhere to turn. I like my LLMD very much and, from what I've read and heard he's very well-respected around our area, but, I just feel so lousy, discouraged and full of doubt. I've spent so much money and time on both FM and Lyme and there's no end in sight! I just keep wondering if I'm ever going to feel even somewhat normal again. The pain is incredible and has grown worse over the past 5 years - I can't imagine what it's going to be like in another 5 if it's not at least slowed down. I work full time (plus overtime) and have a young child to take care of so I don't really have a choice but to keep going whether I feel up to it or not. I have to wonder how much longer I can possibly keep it up. I'm just propped up - the only reason I can do anything is because I'm on medications that help me function!! If it wasn't for them, I wouldn't be able to tie my own shoes, much less work at a job that demands a lot of attention to details!

Anyway - I'm very sorry to be so long here! I'm sure you know how it is when you get on a roll, its hard to stop! I would really appreciate anything anyone can share here that might help me (and others) to understand and accept our diagnoses gracefully.

Thanks!

I say lyme cause it's easier than TBD...as not too many refer to it that way. But in reality, if you've been infected with lyme, it's likely you also have another tick borne disease....and have to treat that as well.

Unfortunately, it's darn hard to get the correct treatment, and even when you do, progress and recovery is painfully slow, if you recover....but many improve.

IV rocephin has a high relapse rate...it chases the bacteria into another form called cyst, and it is necessary to also take an antibiotic to get the cyst form. Otherwise, altho you begin to feel well, the bacteria is really just hiding out in the cyst form.

Lyme is extremely complicated, and when you are able, it's important to educate yourself as much as possible.

There is an over abundance of info here, but a little at a time, and you will build your understanding.

There is no doubt in my mind that you have lyme....just judging by your reaction to the abx. There was a recent post to a good link to info, a personal story and concise info.

When I find it, I'll add it here. http://www.geocities.com/danlms/lyme.html

There are so many options...diff abx combos to try. I have had trouble finding one that works for me....the one I first list is what I'm trying next...There's a post about it...

amoxcycillin 4,000 grams/day with
tinidazole 1500 mg/day

Ketek is a new class of abx, out in canada, release date here is unscheduled. It holds promise against lyme, but not a lot of data out.

zyvox is another very powerful drug which is just beginning to get attn with LLMDs. There is one very encouraging annecdotal story of it having great success with a woman who was resistent to everything else she tried and is now improving.

I think I may be trying that in the future.

Bicillin shots also seem to have good results.

It's a tough road, don't give in to the disease, and continue to vent here...you are in good company.

I haven't got much time, but quickly - these things come to mind.

Your LLMD seems unusual amongst LLMD's in that he's only given you 3 months antibiotics and when you reacted to the Biaxin, he did not continue you on another abx or combo? (why not?)

It sounds to me like you were undertreted, therefore, symptoms are returning (brainfog, etc).

As far as your tests goes, you were positive, (twice), how more sure do you want to be?

For instance, within Dr. B's guidelines it states that often 1-4 years of antibiotic treatment are needed for late Lyme, sometimes on/off for life.

So, I wouldn't expect too much after the time you had on IV and Biaxin.

Sorry to hear you're not feeling well. Lyme Disease does give one a beating, and then some!

To familiarize yourself with Lyme, here are some links for new members like yourself: http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

There is some excellent material in there.

You very likely do have Lyme Disease. How do I know that? Just from your statement about how much better you felt AFTER being treated with IV Rocephin. If you had "only Fibromyalgia", then the Rocephin would not have had any effect on you.

You may still be feeling lousy for two main reasons: no followup oral antibiotic therapy after the Rocephin and no testing for or treatment of co-infections. Lots of times Lyme Disease is complicated by other tickborne diseases such as ehrlichia, bartonella, and babesia. You have to test and treat for these conditions too.

More often than not, it is Lyme Disease that is misdiagnosed as fibromyalgia...not the other way around. There are too many folks on this board who have been misdiagnosed with fibromyalgia who have had their lives restored once they were correctly diagnosed. with Lyme.

Lyme Disease is not easy to get rid of, if not caught early.

Many folks diagnosed with fibromyalgia do well with Magnesium Malate supplements. So do people with Lyme Disease.

There is a wealth of good information on this board regarding standard medical treatments and alternative medical treatments for Lyme.

I can understand your questions. Unfortunately, I don't think anyone can give you an absolute answer. Because Lyme tests are not completely reliable, there is no way to prove for sure you are still currently infected unless they find a live spirochete in your body, which is very hard to do.

I do know that I personally was diagnosed with FMS, along with many other things, before they found I had Lyme disease. Even though I have been sick for 11 years, both my IgM and my IgG western blots were positive.

Many of the doctors who treat Lyme find that the IgM can be repeatedly positive. They theorize that it may show positive when the infection is active.

There are many possibilities if you are not improving. Maybe you need to be treated for coinfections. Maybe you need to have a combination of meds which hasn't been tried before. Maybe you need to check heavy metals in your body, or how your hormones are functioning. Maybe you need more effective pain management.

Some people can do these things with the same doctor they already see, some go to someone different. Sometimes, even with a very good doctor, they just don't have any new ideas.

Going to someone new, who has a fresh perspective on you, will sometimes turn up a new approach. I know about the time and money spent, believe me, after 11 years I've been there. But it has sometimes been completely worthwhile to try something new when I was stumped.

I hope you can find some answers here that will help you know how to keep going.

Welcome to Lymenet.

Your third paragraph has convinced me that you have Borrelia.

A positive IgM means that you have had it a long time. If you have a postive IgG, it means that it's a new infection. IgG can spike from time to time during a Borrelia reproductive period. IgM cycles from high to low over (I think) a 6 month period. There are far more false negatives than false positives with Lyme Disease.

It has been speculated that IV antibiotics force the borrelia in to the cystic state where it is not harming you or being detected by your antibodies. While it's in this state studies have shown that it reproduces thereby releasing more borrelia when the cyst opens up again. Ergo, relapse.

You absolutely must discuss coinfections with you LLMD. I started my therapy with a well known doc in my area who treats Lyme disease. For a year, nothing made me better or worse.

Many times during this time, I felt like I probably didn't have Lyme. My tests constantly came back positive though.

Finally, we tested again for coinfections and they came back positive for Bartonella Henselae and Ehrlichia chaffeensis.

This doc treated me with a protocol that no one on this board had ever heard of and after 2 months said I was cured in lieu of any tests or asking me about symptoms.

This bothered me. I really liked this doctor. To make a long story short, I found another LLMD. This one is a member of ILADS.

I was then told that I probably have babesia and will probably be treated empirically even if my tests don't come back with a positive.

I did test positive (hadn't had a test for this since my first set of tests almost 2 years prior) and I've started treatment. I finally am having a reaction to medication. I'm having my first real herxheimer-like reactions and can tell that I'm hitting something very hard.

So, take my story and do with it what you will. If you want to feel better, you have to take an active role in your health. You also have to research in order to be your own advocate.

This is a very good place to start.

Best wishes,

I was told by my orginal diagnosing LLMD that IGM signified either a brand new infection or a long standing one.

In Burrascanno's Guidelines:

DIAGNOSING LATE DISEASE

When reactive, serologies indicate exposure only and do not directly indicate whether the spirochete is now currently present.

I recommend ordering IgM and IgG western blots. Be aware that in late disease a reactive IgM may not differentiate early from late disease, but it does suggest an active infection.

I was diagnosed with FM about 6 months before the Lyme diagnosis. My LLMD is pretty certain I have co-infections, not necessarily tick bore, and is treating those as well.

How do I know it's Lyme? I just know. At least I know there is some form of infection in me. I just wasn't a classic FM case and things had been going on too long.

But during those 6 months, I did learn what it is like to expect the rest of your life to be a life in pain.

Now, when I look at the Lyme treatment, I look at it as a possibility. Perhaps after treatment my symptoms will be reduced. Perhaps some will go away for good.

But I don't expect it to work 100%. Maybe it will. But I can't think that way, because I can't be certain. And I know I can't handle being let down. If I don't expect a cure, and expect to live the rest of my life like this, then I won't be disappointed.

It sounds like a negative way to think about it, but it really isn't. I hope I am cured. I hope my symptoms are eliminated, but I live my life as if that won't happen. That means two things.

First, I continue to see the doctor who diagnosed the fibromyalgia and I am treating the pain symptoms as best I can. My LLMD knows how to kill the bacteria, but she isn't a pain specialist. I won't wait around in pain for the abx to work.

Second, I'm living life. The FM diagnosis taught me that if I want to do something, I better do it now. Because we don't know what lies around the corner.

So I'm starting law school in the fall. It will be hard, but it may be harder 3 years from now. I spend less time with people I don't like. I try to spend more time having crazy fun times with my friends.

To me, living life as if you may have an illness for the rest of your life doesn't mean limiting your life. It means finding out what is important to you, and putting your energy there.

Maybe it's your family. Maybe it's your partner. Maybe it's your career.

Since learning that FM/CFS dx is sometimes missed LD, the first thing I did was print out Dr B's guidelines and studied it very closely, and then, read everything else I could get my hands on.

I got in to see an LLMD from the "lists" and he confirmed that I had LD and wrote up a recommendation for treatment so my PCP could take care of ordering it for me since I was on an HMO (PCP would if I agreed to see the LLMD periodically). I'm out of the HMO now so I can go to the LLMD on my own.

The LLMD has been frustrated that after 3 months I hadn't improved any more than I have (Zithromax was added toward the end of the 3 months as well), so he ordered testing for heavy metals - which came out OK, nothing unusually high. The last time I saw him (to go over the metals testing results) I had a bad abcess under my arm that he took care of so most of that visit was taking care that. I will be seeing him again the end of July so I hope to get back to LD and ideas for further treatment.

I think the med he mentioned was Zyvox - that sounds familiar. Anyway, I'm pretty limited as far as abx goes. I've had really severe reactions to Tetracycline (especially bad), Sulpha and Penicillin. (SP?)

Rocephin didn't seem to bother me. I didn't have anything that seemed like a herx though, either. I was extremely tired the whole time but I was going twice a day, 4 days a week for treatment and the other 3 days to have the PIC line flushed. A lot of running around on top of working full time and trying to keep up with my family. It also fell right in the middle of the holidays.

One time I was discussing the overwhelming fatigue with one of the docs and he asked if lying down in the afternoon helped at all. I told him I guessed it probably would but I didn't know because I never really got to try it out! You have to wonder if they really have any idea about what our lives are like....!

Anyway - thanks again for the warm welcome! I appreciate it very much, it really does help me feel that I'm following the right path.

The WORST of my symptoms are pain and poor cognitive function - like all of you, the list goes on and on but those are the ones that make life difficult to live. The cognitive function had improved quite a bit after the first month of abx but recently I've noticed that it's gotten bad again. I don't know if it's as bad as before or not, but I'm really having problems remembering things.

There I go again! I really didn't mean to go on so long! It's easy to do, I can't talk to anyone at work or at home about this so I pour it all out at once when I finally can!

Take care!

zyvox is another very powerful drug which is just beginning to get attn with LLMDs. There is one very encouraging annecdotal story of it having great success with a woman who was resistent to everything else she tried and is now improving.

The one thing for me was the time line-I was first diagnosed with cfs after a long trck backbacking the appalachian trail for 2 weeks and have spiraled with my health adding another diagnosis a year if not more.

fibro is not suppose to be progressive--what ever I have is. I was loosing my mind on t0p of everything else.

It also depends on specific bands that are positive--also they did a PCR on me that was postive and as my LLD put it that is as positive as OJ Simpsom's DNA--so I am going with it.

Is is pleasant, no!! I have been much worse, have had to quit my job and spend most of my days in bed right now--and in the end I could still have fibro where are no gurantees--I just know in my heart of hearts that I have been going to over 40 docs all over the country and have been fired by some of the best because I insisted there was something more wrong with me.

When I read about the symptoms of lyme I have all of them--not just a few all of them and have for 15 years--I figure it is worth a shot to see if I cannot get better for me and my family.

Just my 2 cents worth

My symptoms started this time last year or a little over a year ago.

My primary said it was a virus attacking my nerves. I was scared it was ALS. Then I thought it might be MS and wasn't as concerned as I was when I thought it was ALS.

Neurologist gave me a clean bill. The throat specialist gave me a clean bill (swallowing problems). The eye doctor gave me a clean bill (vision problems). My primary gave me a clean bill - it must be a virus. All of the above said I had anxiety.

I kept researching my symptoms and found Fibromyalgia. I thought, wow, I got my diagnosis!

I went to my primary and said, I have Fibromyalgia. She said that I wasn't in enough pain for FMS. She just kept feeding me all types of anti-depressants and nerve pills (which made me have anxiety and panic attacks for the first time).

I decided to switch to my son's pediatrician for my primary doctor. She sent me to a Rheumatologist right away. I had 16 trigger points for FMS. She said you have FMS and I went YEA!!!!!

Back to primary, who told me that the Rheumatologist also said that MOST of my symptoms were NOT Fibro related. Great, I thought - so much for a real diagnosis.

Back to the internet.

I read an article on how FMS is misdiagnosed as Lyme. I emailed the author and she replied that it sounded like I had Lyme. I read more articles on Lyme and all the other diseases that can be misdiagnosed.

I finally found something that fits ALL my symptoms...vision problems, cognitive problems, neurological problems, the pain and stabbing feelings, irritability, problems sleeping, chest pain, rib pain, fevers, etc, etc, etc.

Yet my primary, rheumatologist, infectious disease doctor, and several other doctors tell me there is no way I have Lyme. It's allegies, it's sleep apnea, it's rosacea, it's FMS, it's anxiety...

In the back of my mind, I sometimes wonder if it COULD be anxiety. I wonder if my stomach pain and IBS-like symptoms could be stomach or colon cancer. I wonder iff the abdomen pain and PMS-like cramps I have all the time and back pain could be pancreatic or ovarian cancer. I wonder if the chest pain could be heart related. I wonder if the pain in my breasts could be cancer. I wonder if the lung pain and wierd feelings in the lungs could be lung cancer or pneumonia. I wonder if my symptoms will eventually be ALS.

Sometimes I feel that I have turned into a hypercondriac. Sometimes I worry myself silly. I have never prayed so much in my life as I have this past year.

It's hard not to play mind games with yourself and your symptoms. I know it's really hard for me, as I am a relatively new mom and the first thought I have is who will take care of my son if something happens to me and how will he grow up without a mom (or what kind of person will my husband marry again and will she love my son and be as good and kind to him as me?)?

I had no bands on the IgM or IgG. No coinfections (or atleast that showed up on the tests). I did have a positive PCR and Dot Blot. Which I have been told is the most accurate test. There are many false negatives with a PCR, because Lyme doesn't spend much time in the blood. I understand it is like a pregnancy test there are no false positives if the test was performed correctly.