fibro or lyme?

I have never been happy with this dx. Have always felt there is something else going on. SO my husband and I are constantly looking things up on the net.

He came across an article where some lady was diagnosed with fibro, but it turned out to actually be lyme disase! They said anyone with a dx of fibro, MS, lupus, and a few others, should consider lyme as a possibility as well.

20 years ago I had 2 ticks embedded in my back. Nobody thought much of it back then. And I wondered if you could actually have lyme for 20 years and still be alive. Turns out, you can. So now I've been researching that. I know in my heart that's what I have, so many things would make sense then.

On the lyme symptom list, there are only a few that I don't have or haven't had in my lifetime.

But anyway, I've been living with a dx of fibro for the past 3 years. And it's been a hell. It's hard to find a doctor who understands pain, when it's not something obvious like a broken bone. My friends husband is a doctor, and he got some medical journal saying how too many docs UNDER use pain meds, and too many people are needlessly living in chronic pain.

I have two toddlers, they are 18 months apart in age, so the lack of energy effects my life tremendously. My whole life I have dreamed of having a family, and now that I have one, I can't be the mother and wife I dreamed of. All of this then adds to the depression I am sure you are all familiar with as well. And then anxiety, and on and on and on ....

My friends tell me I do more than a lot of healthy people do. And sometimes I guess I do. But I royally pay for it on the inside. You get used to not showing the pain...I'm really good at that. Nobody cares, or it gets old, you know. Even to my husband.

I know it's hard being the "sick" person in a relationship, but I also know it's very hard being the "care taker" so to speak. So I try to be as independant as I can be.

Of course, my story could go on for pages, but that's just a brief intro.

Regards,

jaime

I had a seizure, an abnormal, then normal brain scan. Last August, I started getting neuropathy and it has grown quickly: small fiber, large fiber and autonomic nervous system neuropathy. I told my neurologist about all of my other symptoms and the bullseye rash, and asked him to run a Western Blot on me, but he wouldn't - he said that it wasn't necessary. He ran the same test as Mayo and of course, it was still negative.

Needless to say, over the past 4 years I lost my job and my new family has had to deal with this. I was married to my husband only 1.5 years before the onset - but he has been absolutely wonderful. He has custody of his two daughters, so I was their new mom when this happened. I hate that I have not been able to be a real mom to them. Before this happened, I was at the top of my game at work, was finally happy after years of a bad marriage and was excited to finally be a mom.

I understand about the pain management and trying to find a doc who will treat you properly. That was my biggest problem, too...it is so hard to function when the pain is so horrible. I'm like you...good at not showing the pain, good at being independent. It's so difficult, though.

I just started seeing a Lyme literate doc. He is treating me with antibiotics for one month before I get the Lyme tests done. If you've read some of the posts about Lyme, it doesn't always show up immediately, but if you have it, it will almost always show up if you are treated for about a month. So that's what we're doing.

I could go on for pages too, but I won't! Hang in there, let me know if you have any questions or have anything to add! And welcome.

Lori

I'm curious since I have been plagued with seizures since I was sixteen and there has been no doctor let alone a neurologist that either believes me or has found anything despite my multiple MRI's, CAT Scans, and EKG's. The only person that has heard of my condition is a psychologist and mentioned that in his experience seizures can be caused by auto-nervous abnormalities.

Any information would be helpful.

Thank you.

They did a scan and found an abnormality in the front region (I don't remember exactly where). They did another test a month later and it was gone. I don't have any other information, I am so sorry. I would love to be able to tell you something that would help.

Do you have someone who has seen your seizures? Have they gone with you to the doctor to verify that you indeed, have seizures? I know that epilepsy is hard to diagnose, Usually, doctors talk to people who have seen the seizures and ask them detailed questions about what happened before, during and after. You could still have epilepsy even if tests don't show anything. I don't know if Lyme causes epilepsy, but I wouldn't be surprised at all.

I'm sorry I can't offer you more help.

Jaime -- two ticks embedded in you -- one tick(adult female tick will stay longer) embedded in my foot for a week, with symptoms starting soon after. And we are the ones who saw our ticks. Many people never see the small nymph-size tick(s) that bit them, since they can bite and drop off without embedding.

And even if some of us do get symptoms right away, like your bull's eye rash, Lori, it often gets dismissed. The bull's eye rash means Lyme disease.

We are writing in to Oprah now to ask her to do a show on Lyme disease. You can post your Lyme story at http://boards.oprah.com/WebX/.f161b7a/0 -- the public will be able to read your story there. You should also ask her to do a show at the "Be on the show/Tell us your ideas" place but that request will not be visible to the public, and I think it's very important that people be able to read each other's stories -- it's validating and informative.

Re the seizures -- we have a Lyme-literate doctor here in San Francisco who's treating seizures with IM bicillin shots. I have personal testimony of someone with Lyme who has seizures who is currently gradually returning to a more functional life as a result. You are welcome to email me at sfrobink@aol.com about it if you wish.

I will do that over at Oprah's site... I think that's a great idea.

It's funny, even though I SAW the ticks in my back, my llmd still tried to dismiss it as "it could have been chiggers" even still, couldn't chiggers carry lyme? And let's not forget that I have 60 some out of 72 symptoms.... I figured that alone would be conclusive of a dx. and yes, I did say llmd.

he's one who takes my insurance, so I'm sure not the best, but I am started on abx, so it's a starting point. can't afford to go it on my own, so I will start here, do what I can and move on when I can.

Yes, it can be a struggle with the docs. Best to get as informed as you can by reading as much as possible and talking with others. Especially since there is so much politics against recognizing and treating this disease that is spreading everywhere.

See www.YankeeMagazine.com -- current issue has a feature story on Lyme disease. It's an eye opener as to the history and politics of lyme and co-infections.

Now, based on everyone's input as well as symptoms, I'm not so sure.

For those suffering from it ad have been dx I can only imaagine what it must be like for you.

Anyways just a couple of thoughts I wished to share.

Best Wishes,

CJ

Post edited by: siskoray, at: 07/07/2007 01:20

The spinal tap one is accurate as long as it gets a spirochete bacteria in its sample, and then it gets the DNA, But a lot of the time, none show up in the sample. Guesses for this have included that the bacteria may be sequestered away in tissue or it may be in cyst form in the spinal cord fluid and thus undetected in the test.

This disease is thus a clinical one. People are treated based on their symptoms and history. No, a short abx treatment for Lyme may not be enough for many.

Just hearing about the tick you found on your back is enough -- I had one tick on my foot in 1981 and that one tick gave me Lyme disease. I'm curious as to your location when you got that tick.

I suggest you read/discuss on www.lymenet.org, our wonderful community discussion site, and then hook up with an LLMD. There are so many ways that people are treating Lyme, by the way. Not just with abx.

Also, it's important to know if you have any co-infections. You can read a list of symptoms for babesia, bartonella, and ehrlichia to see whether you think you match any of it.