It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 01-25-2013, 07:58 PM   #1
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,122
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Bacteria borrelia miyamotoi- Learn it and know it!

A New Jersey woman tested negative for Lyme disease but her LP showed a new organism transmitted by the deer tick: bacteria borrelia miyamotoi, a new disease transmitted by the same deer tick that causes Lyme disease. If you are experiencing the possibility of Lyme, ask for tests to be run for this new bacteria.

Increase your knowledge and pay it forward!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
The Following User Says Thank You to MSJayhawk For This Useful Post:
Whimpurr (01-25-2013)
Old 01-26-2013, 03:43 AM   #2
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,544
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Bacteria borrelia miyamotoi- Learn it and know it!

Living in NJ, I can assure everyone that we have the highest Lyme disease count known over the past ten years....The story goes on to say that deer are being tested all over the state (NJ is a very big state, and not one case of this bacteria has been found. They are showing this story on every news channel locally and there is speculation that this particular tick may have come from the mid west, where the woman's family had traveled not long ago.
__________________
RRMS- dx 05

 
Reply With Quote
Sponsors Lightbulb
   
Old 01-26-2013, 06:11 AM   #3
Veteran
(male)
 
esker's Avatar
 
Join Date: Aug 2008
Location: Boston
Posts: 386
esker HB Useresker HB Useresker HB Useresker HB Useresker HB Useresker HB Useresker HB User
Re: Bacteria borrelia miyamotoi- Learn it and know it!

There are no tests for this new bacteria. The tests are still being developed and might be available by summer of 2013.

Quote:
Originally Posted by MSJayhawk View Post
ask for tests to be run for this new bacteria.

 
Reply With Quote
Old 01-26-2013, 07:50 AM   #4
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,122
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Bacteria borrelia miyamotoi- Learn it and know it!

Granted there is no specific test, but the bacteria can be found in samples of CSF. Some doctors are now checking older samples of cases they were unable to diagnose. WHo knows, maybe there shall be many people exiting limbo land! I do think that when the specific test comes out that it will be well used and we will also probably see an increase in cases.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 01-26-2013, 02:06 PM   #5
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,544
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Bacteria borrelia miyamotoi- Learn it and know it!

There is absoloutely a blood test which is being done all over labs in NJ which picks up this bacteria. Its expensive, it is not found in the standard western blot test; however there is absolutely a test to check for this. Today, cases were discovered in New England and New York, all found via blood work.
Nikki
__________________
RRMS- dx 05

 
Reply With Quote
Old 01-26-2013, 07:21 PM   #6
Inactive
(female)
 
Join Date: Sep 2012
Location: Tennessee
Posts: 293
Whimpurr HB UserWhimpurr HB UserWhimpurr HB UserWhimpurr HB UserWhimpurr HB User
Re: Bacteria borrelia miyamotoi- Learn it and know it!

So is all of this pointing back to the strong possibility that many MS cases are actually misdiagnosed Lyme? OR do you feel that Lyme possibly brings on or even causes MS?

 
Reply With Quote
Old 01-26-2013, 07:28 PM   #7
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,122
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Bacteria borrelia miyamotoi- Learn it and know it!

No, Lyme and MS are separate and this bacterial infection would actually leave the patient in limbo land. This should be a test which can "clear" the books for undiagnosed people stuck in Limbo Land and it should be treatable.

Essentially, when you present with MS like symptoms, instead of 1 of 400 now there are 1 in 401 possibilities
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 01-26-2013, 07:41 PM   #8
Inactive
(female)
 
Join Date: Sep 2012
Location: Tennessee
Posts: 293
Whimpurr HB UserWhimpurr HB UserWhimpurr HB UserWhimpurr HB UserWhimpurr HB User
Re: Bacteria borrelia miyamotoi- Learn it and know it!

Quote:
Originally Posted by MSJayhawk View Post
No, Lyme and MS are separate and this bacterial infection would actually leave the patient in limbo land. This should be a test which can "clear" the books for undiagnosed people stuck in Limbo Land and it should be treatable.

Essentially, when you present with MS like symptoms, instead of 1 of 400 now there are 1 in 401 possibilities
Do you think that they can completely rule out Lyme though due to the unreliable tests?

 
Reply With Quote
Old 01-26-2013, 10:04 PM   #9
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,122
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Bacteria borrelia miyamotoi- Learn it and know it!

If your Lyme test has been sent to a lab with a good track record of Lyme testing, then Lyme should be no problem. This new bacteria is different from Lyme, hence an additional test. Again, a proper lab should be able to detect either Lyme or the new bacteria.

Now, this said, can someone have both Lyme and MS? Yes, MS does not discriminate. I did business with a gentleman (years ago) who had Lupus and Lyme.
Because of the mimicries, the MS diagnostic process tests for Lyme and will have to also test for this bacteria.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 05-07-2013, 12:32 PM   #10
Inactive
(female)
 
Join Date: Sep 2012
Location: Tennessee
Posts: 293
Whimpurr HB UserWhimpurr HB UserWhimpurr HB UserWhimpurr HB UserWhimpurr HB User
Re: Bacteria borrelia miyamotoi- Learn it and know it!

Sorry to bring this back up ... but truth be known, I was dx with Lyme Disease 3 years ago. I didnt' want to mention it as I wanted clear opinions unmuddied by Lyme Disease controversy. Now, I am again concerned as my pains are getting more like I experienced when first tested for Lyme after becoming symptomatic a 5 weeks after finding a very itchy bite on my belly.

At that time, I tested negative at my regular GP's office but through the magic of the internet, was referred to an LLMD (lyme literate doctor) and he had me tested through IGENEX labs in California. My results for Lyme were "very positive" by the Lyme community's definition. I began extensive antibiotic treatment for about 6 months and did improve. However, I stopped the abx due to stomach issues and being tired of taking so many pills, multiple abx and supplements, etc.

Anyway, I remained virtually symptom-free (except a few vague twitches now and then) and felt great until I found another tick on my belly a year ago and became symptomatic again. Went back to the LLMD and I tested negative, only this time he didn't test me through IGENEX and he seemed less interested in my case. My tests came back negative and when I asked him why I was symptomatic again he replied, "I have no idea ... maybe an immune reaction?" When I asked how his littler girl who he previously had said had Lyme Disease was doing, he said she has MS. So ... is he now questioning Lyme as well?

I know I am rambling but I am so scared that I do not have a clear diagnosis. When I mentioned Lyme to my MS specialist this past visit, he basically laughed. I do however, have a call into his NP today as I am having the migrating pains like I experienced that first time I had "Lyme" or whatever!

:'( I don't want to be crazy, I just need to know once and for all what I have and how to or not to treat it!

 
Reply With Quote
Old 05-07-2013, 01:02 PM   #11
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,122
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Bacteria borrelia miyamotoi- Learn it and know it!

Whimpurr,

Lyme is a disease which is one of many MS mimicries and it is tested for, or should be, early in the diagnostic process because early intervention is needed to prevent long term damage. I think that the girl having MS after having Lyme can be a "coinky-dink". That is, MS often arrives like an unwelcome guest. Lyme could have been the stressor which turned on a series of events and reactions which culminated with MS. Not enough is known about MS to know how or why or when it will occur. If doctors knew more, we would have discussions of cures instead of meds treating symptoms.

I would treat your Lyme as a separate issue as far as your meds go. If unchecked, it could be a key factor in the presentation of MS symptoms.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 05-07-2013, 01:07 PM   #12
Inactive
(female)
 
Join Date: Sep 2012
Location: Tennessee
Posts: 293
Whimpurr HB UserWhimpurr HB UserWhimpurr HB UserWhimpurr HB UserWhimpurr HB User
Re: Bacteria borrelia miyamotoi- Learn it and know it!

Quote:
Originally Posted by MSJayhawk View Post
Whimpurr,

Lyme is a disease which is one of many MS mimicries and it is tested for, or should be, early in the diagnostic process because early intervention is needed to prevent long term damage. I think that the girl having MS after having Lyme can be a "coinky-dink". That is, MS often arrives like an unwelcome guest. Lyme could have been the stressor which turned on a series of events and reactions which culminated with MS. Not enough is known about MS to know how or why or when it will occur. If doctors knew more, we would have discussions of cures instead of meds treating symptoms.

I would treat your Lyme as a separate issue as far as your meds go. If unchecked, it could be a key factor in the presentation of MS symptoms.
Well, I did address the Lyme upfront with my MS specialist and gave him copies of all my previous testings for Lyme. He also said I was re-tested through his practice. Haven't seen those tests myself but will have to trust him on that one.

So ... are you saying that you believe I DO have MS and that potentially I also got Lyme which "brought out" the MS? I do still have the high school years forward where I had vague symptoms that point to MS.

 
Reply With Quote
Old 05-07-2013, 01:39 PM   #13
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,122
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Bacteria borrelia miyamotoi- Learn it and know it!

Whimpurr,

The forensic investigation to pinpoint your MS beginnings can actually be fun. My mom had left my old shoes which provided my earliest foot drop evidence.

Had you shown signs of Lyme or had a positive response, your doctor would have had you begin treatments for Lyme because the symptoms can mimic MS. Once your Lyme were situated, then the diagnosis could continue if you were still presenting with symptoms. Mimicries can cause the diagnostic process to slow to a crawl. It is important to eliminate other possibilities before a chronic disease diagnosis is rendered. Many mimicries are quite easily treated and some, like Lyme, are most easily treated when caught early.

What I am saying is that I believe stressors bring out our MS. For you it could have been Lyme but for others it could be a case of mononucleosis. Head trauma, a death, ,,,, it is hard to know. I think that when we reach a certain threshold, if we are predisposed to MS (reasons unknown), there is usually a triggering event which could be a simple "last straw" or it could be something major. Your Lyme issue could be totally unrelated and might be "Murphy's Law." I had a friend who had Lupus and Lyme. Like with MS, many auto-immune diseases are equal opportunity diseases and can present in tandem, concurrent, or in a series with other diseases.

I would encourage you to discuss this with your MS Specialist so that, if anything, you can lay aside the additional worries and anxiety which can hit were another potential medical issue arise.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 05-07-2013, 02:03 PM   #14
Inactive
(female)
 
Join Date: Sep 2012
Location: Tennessee
Posts: 293
Whimpurr HB UserWhimpurr HB UserWhimpurr HB UserWhimpurr HB UserWhimpurr HB User
Re: Bacteria borrelia miyamotoi- Learn it and know it!

Ok, I will try to put the whole Lyme issue to bed now. I just finished reading all the way through the online blog I made during that time. Some of the theories with medication seem a bit silly reading them now. Still waiting to get the phone call from my MS nurse practitioner. She's going to think I'm mental for sure!

 
Reply With Quote
Old 05-07-2013, 02:47 PM   #15
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,122
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Bacteria borrelia miyamotoi- Learn it and know it!

Whimpurr,

As long as your MRI shows evidence of a brain, you will be ok! I know it is reassuring for me to know that I have at least 1/2 a brain! When my MS worsened in 2002, I questioned if it might be ALS or something else. My neuro told me she often gets similar questions; therefore, your doubts are not abnormal!!!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
The Following User Says Thank You to MSJayhawk For This Useful Post:
Whimpurr (05-07-2013)
Reply Reply




« On | I.V. Steroids »
Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



MSJayhawk (937), MSNik (497), Snoopy61 (55), J-one (13), Whimpurr (13), shahila (12), JodiH (11), MS22 (11), KingBaxter (10), Canadian gal (10)

Site Wide Totals

teteri66 (1136), MSJayhawk (941), Apollo123 (856), janewhite1 (823), Titchou (771), Gabriel (743), ladybud (667), sammy64 (666), midwest1 (655), BlueSkies14 (610)



All times are GMT -7. The time now is 09:07 AM.



Site owned and operated by HealthBoards.com™
Copyright and Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!