I find this alarming- how about you?

I am a 36 year-old female, diagnosed with Lyme, but only because I pursued an LLMD.  If I did not, I would have started MS treatments, as my neuro ruled-out Lyme. 

Since being a member of Facebook, I have been in touch with many people I grew up with.  Three friends in my close group all have been diagnosed with Multiple Sclerosis.  If I had accepted my diagnosis, that would make four of us with diagnosis.  Four people with MS. 

I find the problem is getting through to those who have accepted their diagnosis of MS.  My one friend said, Oh, I know I have MS.  My neuro ruled-out Lyme.  My Lyme tests were negative. 

He was just diagnosed at age 38.  He said he woke up and couldn't walk.  It was sudden.  He also told me that he is not doing the MS shots because he is not convinced that they help, as some people do them and they are fine, while others continue to get worse.

Any thoughts?

What I find alarming is that most of my friends on Facebook don't even know what Lyme Disease is, so I put a note on my FB saying if you have this and that symptom, etc., to please get tested for Lyme Disease. The scary thing is that some people are suffering and don't even know what they have.

I've had 2 nero doctors diagnose me as probable MS (they both suggested going on MS meds) i just went to a LLMD and he is sure i actually have Lyme disease. He sent a blood sample to Igenx for testing and we are waiting for results. I'm hoping and praying that i dont have MS.

If you look at where there are "clusters" of ms cases in the US, it is always in highly endemic Lyme areas.

So true lovelabs. NH last year had one of the highest reports of new Lyme cases. Interesting... My neurologist there has never mentioned the words Lyme Disease.  

I have a friend who has a "borderline lupus" diagnosis. She has had multiple surgeries for different problems such as carpel tunnel, disc issues in her neck. Her memory is bad, she gets lost. She had a Lyme test that was negative(only the Elisa(sp?)),and she tested positive for babs, so her doc put her on mepron for a month. Her doctor said she doesn't have Lyme. She believes him. Hellllooooo. Yes you do.

I also have a friend who has had MS for years. When I ask her about lyme,she said they ruled out as tests were negative. I have always wondered how many ms sufferers actually have lyme. I know of 3 people in my small town which is very high lyme area supposedly with ms. Really makes you wonder.

Alarming - definitely. Suprising - no, it's what I would expect. Lyme is misdiagnosed so often and and as most of us have experieinced, most doctors don't give tests that result in accurate diagnosis.

I asked my LLMD if he thought I had brain lesions. He answered "probably, but there's not much to do about them except to treat the Lyme/co-infections - you'll be misdiagnosed as having MS if you have the MRI/brain scan."

I'm sorry so many of you are so sick.

Victoria

That is interesting your friend woke up one morning and couldn't walk as the same thing happened to my  hospital roommate  who aso had a stroke.  This disease can cause atrial fib of the heart producing a  blood clot which can makeit's  way to the brain and cause a stroke!  This is what caused my stroke.  At least the hospital doctors agree on that point.

What state do you live in? ?  iI live in Washington state, although my tick bite was in  eastern Oregon.  Most of the doctors I have talked with say their is no lyme out here.

My take on this is a bit different...I don't believe people want to "cling to" their original diagnosis or are unwilling to at least test for Lyme Disease. They are just like most of us were before getting caught in this no-man's land of LD. Before all of this, if I had a problem I went to the doctor. They told me what it was and I did/took whatever treatment they told me to. I had no reason to doubt or question them - I am not a doctor nor do I have any special medical knowledge or training. I believed medicine was very black and white, cut and dry; that's the way it appeared and I had absolutely no reason to doubt this. If doctors ruled something out, I did NOT have it, so why would I continue to pursue it? It would make me look stupid and be a waste of money.

I had LD for 4 years before I was diagnosed. I went to the doctor immediately when my symptoms started. I had an Elisa LD within one month of my symptoms starting, and it was negative. After several months of many, many doctor and specialist visits, countless tests, and ever increasing symptoms coming on out of knowwhere - with some of them being an increase in the symptoms I previously had because of the Hashimotos Thyroid I had for MANY years before all of this came on (Note: Hashi's thyroid is exceptionally common and is NOT specific or more often diagnosed in LD patients - ask around, especially middle age and beyond, you will find you know lots of people with it - we have 6 in an office of less than 30 people) . Doctors were stumped and I looked like a moron - they just didn't get it at all and thought I was just suddenly having lots of unrelated issues popping up. I started researching the Web. I found LD and saw that sometimes people actually really did have LD even though the test was negative. I started reading and honestly thought what a bunch of wackos! They are blaming EVERYTHING on LD, and some of those things are obviously just things that OTHER people get too. It was overwhelming and something I thought was like the dumping ground for people who CAN'T ACCEPT any other diagnosis. However, I did bring some printed material to my doctor appointment and asked what type of Lyme test I had. My doctor actually listened to me and gave me the name of an alternative doctor who successfully treated another of her patients for LD. We discussed it and she really did not think I had LD, but it was up to me if I wanted to pursue it, she didn't discourage me but just really left me with the feeling that the test results were definitive and if I wanted to waste my money, go for it. Well, I thought just for my own peace of mind, I'd call the lab and VERIFY if I had the Elisa or Western Blot test. The person wasn't sure - upon explaining and questioning directly 'was this the Western Blot test' that I had? She said "I think so." I more recently found out it was not a Western Blot, but the Elisa test. There you have it; I pursued this and I got the recommended LD test to find out 'for sure' and this door was closed; I had NO reason to pursue it - even if someone other than a doctor would have told me otherwise because people are always to trying to "push" their own illnesses onto other people to get checked out. Every doctor I had seen in the next 4 years initially thought of LD because of my symptoms, but when they saw the negative test result that door was closed - I didn't push it because I had NO REASON to - it's negative, time to move on and find out what this REALLY is.  about a year and a half ago, a new doctor I saw said we really should do a follow up LD test - it was also an Elisa test and was also negative. This past summer I pursued an alternative doctor because I couldn't get any doctor to even discuss the fact that my thyroid symptoms were just all over the place and had been ever since all this started. This has always just confused doctors because my worst thyroid symptom has always been dizziness, and when this started the dizziness was crazy - it would be severe and sometimes a combination of vertigo and room spinning type. My TSH hopped all over the place and at one point was told it was because I'm getting so many TSH's and that it naturally does jump around a bit and all this testing is just showing that, and that my TSH has always been within range so it's not my thyroid.

OK, jump ahead to my alternative doctor. I wanted her to at least look into the thyroid and all hormones because I couldn't get anyone to even discuss this being a hormone issue because "testing would likely show my hormones are normal, it's just the way each individual person's body reacts them." Well, this doctor was very willing to look into my thyroid and other hormones, but immediately said I need to have an Igenex Lab LD test. I was really annoyed because I brought with me 2 negative LD test results and this Igenex one was nearly $300 and they didn't know if insurance would cover it or not. I VERY grudgingly had the test, and could not believe it when they called and told me it was positive. I was equally dismayed when I got a copy of the results and they 'clearly' were not positive. It even said so on the result sheet! I called my doctor, quite upset, asking why they would tell me it's positive when it is not! That's when I began to learn all about this LD, and it was very nicely explained about the bands, with the lyme specific ones being especially important. The fact that the lyme specfic indeterminate bands in conjunction with actual positive ones, plus my symptoms, made for a clinical diagnosis. Even though I was about doing cartwheels I was so happy to finally have a diagnosis, I did so tentatively. The test really did say negative. I had already incorrectly been told all of my symptoms were caused by an allergy. My own GP, upon my inquery and a copy of my Igenex Lab results, said I do not have LD.

Why would anyone continue to pursue THIS if they already have a diagnosis, are receiving treatment, and being told they definitively do not have LD? I NEVER would have pursued this again and would have been equally 'happy' to finally have any diagnosis, just to be able to move on already - the unknown is so much worse than knowing what you are fighting. What I'm trying to say is, don't be so hard on those people who you "know" have LD and refuse to pursue it. I would bet there are a fair share of us here on this forum who really do have something OTHER than LD, but received a clinic diagnosis and so WE are clinging THAT diagnosis.

Post Edited (Tala3) : 1/30/2010 9:15:49 AM (GMT-7)

Bella49- I live and grew-up in Maryland, in the suburbs of DC.

As far as anyone pursuing this as a daignosis... What is MS exactly and the other diseases that have no known cure or cause. To me, it sounds like a label for something unknown. I am confirmed with Lyme in my spinal, so I think my friends should consider Lyme for them, too. I just don't believe that 4 people from one group would all have MS (me being the 4th that pursued a different diagnosis), as MS is not as common as the flu. Really, all of us recevied diagnosis in our mid to late 30s, wtih no family history of MS (over the past few years).

And another major obstacle is the cost of treatment... the uninsured who can't work because of their diabilities can't afford it.

I also wonder how many others from my group have been diagnosed with MS or other similar conditons and don't share that information. This is what I'm trying to find out now.

Tala3-  Thanks for sharing your story.  That is a lot to go through and I'm sorry.   I think my friends should look into Lyme because we have basically the same symptoms, age of diagnosis, lack of MS in family history and the fact that there would be 4 of us, which in itself is enough to make a case for seeking a second opinion.  My neuro didn't even consider that I had lyme because she was going on the WB (even though I had several hits) and here it is in my spinal fluid.  I too have questioned what I have even though I have an actual diagnosis because I think, what if... but then I remember all that I have learned and don't think it's far-fetched to think that one day, we might learn that MS is really a name for Lyme or some other bacterial infection. 

Post Edited (mokeyho) : 1/31/2010 6:01:55 AM (GMT-7)