Nervous, excited and questions

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BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 7/25/2006 2:20 PM (GMT -7)   
Hi everyone,

I have an appointment with an MS specialist on Thursday. The doc sees 2000 patients a year with MS, so I thought that she'd know if I had MS. She was also recommended by the MS society.

I am nervous because I want to make sure I have all of my records and don't want to forget any of them. I am also very excited because I might finally get an answer, especially since I am in another flare.

My family has had 2 deaths in the last month and a half and I have been involved in funeral arragements for both. I guess that could send someone into a flare, along with the heat. Fortunately, my spirits have stayed high.

My question is; Violets posted on a post telling someone to get checked for Lyme Disease. I have been checked twice with 2 different tests and they both came back negative. I checked the symptoms and they seem to be a lot like MS. Now, I don't camp, but I did have a tick when I was 8 or 9 that left a mark because my mom burned it off of me. I am just questioning whether or not I'm looking into the right disease. I guess Lyme can live in your body for 20 years and you never know it.

I've had 4 docs now, tell me they all suspect MS. That's what brought me here and what had us think it was MS. One doc even said I was text book without lessions but couldn't dx because I only had one flare at that time.

I'm just a little confused and needed support. It is difficult to be in limbo and always have questions.

Thanks for your support!

Lysha
When everything's coming your way, you're in the wrong lane.


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 7/25/2006 4:59 PM (GMT -7)   
Despite everything you read on the internet, it really is quite UNlikely that you have lyme disease. If I'd had two tests, both negative, I'd pursue other things first. The tick that your mother burned off you is NOT the tick that transmits lyme, anyway. The lyme tick is very small, about the size of this . and wouldn't be so noticed that she'd have done that. Yes, Lyme can "live" in your body for the rest of your life..and sure, it's possible..but I'd pursue the MS diagnosis first. Especially since you've had 4 docs now, pointing in that direction.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 7/26/2006 1:04 PM (GMT -7)   
Hi Lysha,

Just wanted to wish you luck with your appointment tomorrow. Maybe tonight you could gather everything together to make sure nothing is forgotten. You'll do fine!! :-) I really do hope you get some answers and this doc will be able to help you. Lyme does have very similar symptoms to MS, but I would listen to what this doc has to say first about MS. If they are puzzled to your situation you could always bring up the issue and see if they want to test you for that again. Best of luck, please let us know what you find out.

I'm very sorry on the recent loss of your family members and yes stress of that nature could bring about a flare.

Kimber
 
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BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 7/27/2006 8:59 AM (GMT -7)   
Violets,

Thank you for posting on this!

For a lot of people who are not dx yet this will be helpful.

It made me a little confused because I don't camp, I don't like being in the woods and for many years now I have lived in the city. The test came back negative and I have never had the rash so I thought it wasn't a possibility. Through research, I did find that it can live in your body for even decades.

I will be asking my docs more about this.

I was never angry! I just had a one track mind and it was MS. I tried telling myself to stay open to other possibilities but it is difficult sometimes. If you can concentrate on one illness at a time, sometimes it is easier. Especially for me, I can't seem to multi task anymore!!LOL

I will post updates when I get back from the nuero.

Thanks again to everyone for your support!!!!

Lysha
When everything's coming your way, you're in the wrong lane.


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 7/27/2006 2:38 PM (GMT -7)   
Hey Lysha

I tried to post this earlier in the week and my stinkin modem kept disconnecting me..so here i am to try once again.

I'm like u...un-dx...and have a one track mind on MS. I was tested early on for lyme disease and was told it was neg, but as i thought of u'r post and remembered my own research, i remembered seeing someplace that there's a lab out in CA (i THINK Palo Alto) that is thought to be the most accurate lab for testing for lyme. I was bitten during the aftermath of Katrina and so suspected it could be that. Of course getting a neg result ended that for me. Now i think with my normal test results recently that i'm gonna ask to be re-tested and for the test to be sent to that lab. I could be wrong, but it can't hurt to ask. Best wishes to u on u'r appt today!!

rhonda

KCLyme
Regular Member


Date Joined Jun 2006
Total Posts : 316
   Posted 7/29/2006 10:15 PM (GMT -7)   
Hi Lysha and Rhonda,

Even the CDC says Lyme should be a clinical diagnosis because there are no FDA-approved tests that have a high enough degree of accuracy to be used for absolute diagnostic purposes.

The ELISA test is virtually worthless in chronic Lyme cases. It gives more false negatives than any other.

The Igenex lab in Palo Alto does give positive (and later proven accurate) results for Lyme when other tests do not in some cases. Also, sometimes Lyme Western Blot results get misinterpreted because doctors don't apply the proper standards for the patient's situation. It is estimated there are over 300 strains of Lyme. Since most of the tests only check for antibodies to a very small number of those, and your body can stop producing antibodies over time, the test results are much more likely to be false negative than they are false positive especially if they are interpreted according to standards designed around different strains than you have. My doctor interpreted my Western Blot results as positive although some doctors would not have.

There is a test done by the Bowen Lab in Florida that tests for the bacteria themselves. The process is basically the same concept applied to E-Coli detection---fluorescing the bacteria using a serial dilution process to determine your numeric level of infection. It is still pending FDA approval, but it has been patented. I live in Missouri, very near Lysha, and this is the ONLY test that showed me 100% positive for Lyme.

I know the Lyme diagnosis was correct for me because of my response to the antibiotics and my pattern of symptoms over the years since I was bit by a common dog tick in Kansas when I was 7 years old. My idea of camping is staying at the Hilton.

As for the statement regarding the type of tick that can cause Lyme, that is one of the most common misconceptions. I think it stems from the fact that that was the type of tick that Lyme was first found in in the 1970's in the U.S.. Also, because Lyme has not received lots of media attention and funding like some other diseases, much has yet to be discovered and understood about it. Lyme has been proven in university studies to be transmitted by other types of ticks besides deer ticks including the common dog tick in the Midwest and the Lone Star tick in Texas and Oklahoma. You also do not necessarily have to have had a bullseye rash or flu-like symptoms like the media commonly says.

The risk of being treated for MS if you really have Lyme is two-fold as I see it: 1) Steroids are sometimes used to treat MS, and in people who actually have Lyme, their adrenal systems may not be able to recover when the steroids are stopped. The Lyme can really take off without the opposition of a healthy immune system. I have read this and experienced it personally when my adult-onset "asthma" (which was actually Lyme) was treated with prednisone. 2) The longer Lyme goes untreated the more it can affect your health and the longer and harder it can be to recover from.

There are two new people on the Lyme board who were previously misdiagnosed with MS, and I personally know of two other Lyme people who were misdiagnosed with MS and one who was misdiagnosed with ALS. Those last three people were all in wheelchairs and can now walk.

If you would like more info on the Bowen Lyme test, please post on the Lyme board and I'll be happy to provide it.

Post Edited (KCLyme) : 7/29/2006 11:22:19 PM (GMT-6)


whtedragons78
Regular Member


Date Joined Jun 2006
Total Posts : 74
   Posted 7/30/2006 8:16 PM (GMT -7)   
In reading some of the posts about how Lyme desease mimics MS, that is one test i have not had yet, so do you know if any dr can order it. I would like to get it done before my mayo clinic visit since that is one test i know that i havent had yet. At this point, anything i can get out of the way and test for to help they figure this out im all for. I do remember that in the past i had a tick bite so its at least worth looking at.

The last neuro visit, they did ck my B-12 and thyroid and those came out normal so did the heart halter monitor that i wore (just had a rapid heart beat at times) but they stated nothing out of the ordinary. So thats 3 things ck'd and cleared. I really am trying to have a positive attitude when the tests come back normal. At least you can say ok i dont have this or that, and move on to the next thing or posibility they think it might be.

Cyndi

BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 7/30/2006 9:00 PM (GMT -7)   
Cyndi,

I do know that a normal Lyme test most of the time will come out negative. The test needs to be sent to a reputable lab. If you post your question on the Lyme forum you will get great info and lots of responses. You can also check out the Lyme Association and they can give you Lyme Litterate Medical Docs (LLMD) in your area.

Good Luck

Lysha
When everything's coming your way, you're in the wrong lane.

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