LymeNet Flash: Study Recruiting: Clinical, Immunological and Virological Assessment of Patients w/MS

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»	LymeNet Flash » Questions and Discussion » Medical Questions » Study Recruiting: Clinical, Immunological and Virological Assessment of Patients w/MS

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Topic: Study Recruiting: Clinical, Immunological and Virological Assessment of Patients w/MS

AliG
Frequent Contributor (1K+ posts)
Member # 9734

posted

Should we see if we can get them to figure out why some of us have MS symptoms?

We might help those who present with MS symptoms that never get tested/ABX trial/considered for Lyme Diagnoses.

NIH Clinical Study

Title: Combined Clinical, Immunological and Virological Assessment of Patients with Multiple Sclerosis (MS)

Number:
76-N-0021

Summary:
Multiple sclerosis (MS) is a disease of the nervous system.

The exact cause of MS is unknown, but it is believed to be an autoimmune condition.

Autoimmune conditions are diseases that cause the body's immune system and natural defenses to attack healthy cells.

In the case of MS, the immune system begins attacking myelin, the cells that make up the sheath covering nerves.

Without myelin, nerves are unable to transmit signals effectively and symptoms occur.

This study is directed toward a better understanding of the cause of Multiple Sclerosis (MS).

Researchers will evaluate patients with a tentative diagnosis of MS or other neurological diseases possibly caused by a immunological reaction.

Patients will undergo a series of three MRIs, taken once a month for three months and submit blood samples for immunological studies.

Sponsoring Institute:
National Institute of Neurological Disorders and Stroke (NINDS)

Recruitment Detail
Type: Participants currently recruited/enrolled
Gender: Male & Female

Referral Letter Required: No

Population Exclusion(s): Children

Eligibility Criteria:

INCLUSION CRITERIA:

Diagnosis of possible MS.

Age between 18 and 75.

EXCLUSION CRITERIA:

Clinically significant medical condition other than MS that could cause neurological dysfunction.

Currently enrolled in an experimental study.

Medical contraindication for MRI.

Psychological contraindications for MRI.

Unable to provide informed consent.

Special Instructions:

Currently Not Provided

Keywords:
Immunogenetics
Tropical Spastic Paraplegia
Twins
Epstein-Barr Virus
HTLV-I
Vasculitis
Cerebrospinal Fluid
Immunity to Viruses
Multiple Sclerosis
Magnetic Resonance Imaging

Recruitment Keyword(s):
None

Condition(s):
Herpesviridae Infection
HTLV-I Infection
Multiple Sclerosis
Tropical Spastic Paraparesis
Vasculitis

Investigational Drug(s):
None

Investigational Device(s):
None

Intervention(s):
None

Supporting Site:
National Institute of Neurological Disorders and Stroke

Contact(s):
Patient Recruitment and Public Liaison Office
Building 61
10 Cloister Court
Bethesda, Maryland 20892-4754
Toll Free: 1-800-411-1222
TTY: 301-594-9774 (local),1-866-411-1010 (toll free)
Fax: 301-480-9793

Electronic Mail:[email protected]

Citation(s):
Immunological aspects of demyelinating diseases

Brain magnetic imaging in primary Sjogren's syndrome central nervous system disease

The germline repertoire of T cell receptor beta-chain genes in patients with chronic progressive multiple sclerosis

Active Accrual, Protocols Recruiting New Patients

If you have:

* Questions about participating in a study, please contact the Patient Recruitment and Public Liaison Office, CC.
* Technical questions regarding the Clinical Center web site, please contact the Department of Networks and Applications, CC.

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006 | IP: Logged |

soonermom
LymeNet Contributor
Member # 14494

posted

Hey, thanks for the info!

I just got back from my LLMD appt. and he told me that he doesn't usually see patients with O-bands in their CSF (I have one)...SIGH>>>>but he did think it was probably lyme related.

Anyway, I just emailed them my info and will see what happens. I have brain lesions also but never officially diagnosed w/MS. I tested positive for lyme and so I quit going to neurologists soon after.

I think people like me NEED to be studied!! Let's figure this stuff out so someone else won't have to go through it.

--------------------
3/08 CDC Positive
IgM 18++ 23-25IND 31++++ 34++ 39+ 41+++ 58+ 83-93+

CDC Negative
IgG 31IND 39IND 41+++ 58+ 66+

Posts: 274 | From oklahoma | Registered: Jan 2008 | IP: Logged |

skrwolf
LymeNet Contributor
Member # 1575

posted

This looks like a pretty good study. However, this is one of the exclusion criteria...

"Clinically significant medical condition other than MS that could cause neurological dysfunction'

Would Lyme be considered clinically significant? It is in me and does cause neurological dysfunction.

Shelly :-)

Posts: 292 | From UT | Registered: Aug 2001 | IP: Logged |

soonermom
LymeNet Contributor
Member # 14494

posted

Yea, I wondered that too. I put that as part of my email (that I had tested positive for Lyme).

Of course none of the doctors in my state think that I could even have lyme, though. hehe

I will let you know if I get a response from them. [dizzy]

--------------------
3/08 CDC Positive
IgM 18++ 23-25IND 31++++ 34++ 39+ 41+++ 58+ 83-93+

CDC Negative
IgG 31IND 39IND 41+++ 58+ 66+

Posts: 274 | From oklahoma | Registered: Jan 2008 | IP: Logged |

AliG
Frequent Contributor (1K+ posts)
Member # 9734

posted

I had e-mailed them with that question, as well.

It appears to me as though they are looking for infectious causes, so I don't think it would make sense for them to rule out people with known infections.

I am hoping that they are referring to hereditary diseases, neurological damage from head trauma or other causes that feel they KNOW are not possible infectious links.

I also asked if ABX treatment would be disallowed during study.

I also asked if Lumbar Puncture would be required if MRIs are clean.

I'll post any answers to my questions here, when I get them.

In addition to borreliosis, I listed all of mt positive viral titers & co-infection tests and the "rare coccobaccili attached to erythrocytes".

I figured that, even if they would exclude me, it might be good for them to see that whatever I've got is causing MS symptoms.

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006 | IP: Logged |

AliG
Frequent Contributor (1K+ posts)
Member # 9734

posted

I received this e-mail in response to my query.
(I did not disclose any personally identifying information, other than my e-mail address.)

quote:
(The bolding is mine)

Dear XXXX,

Thank you for your inquiry. Your recent email message has reached the Patient Recruitment and Public Liaison Office of the National Institutes of Health Clinical Center.

Our office provides information about how to take part in research studies here at the Clinical Center in Bethesda, Maryland.

We appreciate the medical background information you have provided. Your study specific questions will need to be addressed by the study team, once a referral has been made.

Study 07-N-0021, entitled ``Combined Clinical, Immunological and Virological Assessment of Patients with Multiple Sclerosis (MS)'' is recruiting new participants.

If you are interested in being considered as a participant for this study, please call us toll free at 1-800-366-5165 (TTY 1-866-411-1010) so that we may complete your referral.

If call volumes are high and you choose to leave a voice message, please include a telephone number where you can be reached between the hours of 8:00AM -8:00PM EST Monday through Friday.

Thank you,

Patient Recruitment and Public Liaison Section
NIH Clinical Research Center
Department of Health and Human Services
Bethesda, MD
Toll-Free 1-800-411-1222
TTY: 1-866-411-1010
Hrs: Monday - Friday 8:00 AM - 8:00 PM (EST) Closed Federal holidays

Internet: http://www.cc.nih.gov

Study Information: http://clinicalstudies.info.nih.gov

The purpose for collecting your name and e-mail address is to respond to your query and/or refer you to one or more Institutes for possible participation in a study.

Please be advised that email is not necessarily secure against interception. If your communication contains sensitive or personal information, you are encouraged to contact us by phone via our toll free number

I guess I have to actually apply to have my info forwarded and have my questions answered by those conducting the study.

[confused]

Soonermom, Did you get any reply/answers yet?

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006 | IP: Logged |

soonermom
LymeNet Contributor
Member # 14494

posted

No, I haven't received an email yet. I will let you know if I do.

So, what are you going to do. Who does the referral, one of their doctors??

I am assuming that you can do this with out traveling to MD?

Let me know if you call them and what they say!

--------------------
3/08 CDC Positive
IgM 18++ 23-25IND 31++++ 34++ 39+ 41+++ 58+ 83-93+

CDC Negative
IgG 31IND 39IND 41+++ 58+ 66+

Posts: 274 | From oklahoma | Registered: Jan 2008 | IP: Logged |

AliG
Frequent Contributor (1K+ posts)
Member # 9734

posted

With a little digging, I was able to find out that a Senior Investigator involved with the study is Henry F. McFarland, M.D.

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006 | IP: Logged |

AliG
Frequent Contributor (1K+ posts)
Member # 9734

posted

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006 | IP: Logged |

soonermom
LymeNet Contributor
Member # 14494

posted

I still haven't received an email, but I just got a phone call from UNKOWN NAME...area code 301..Maryland. They didn't leave a message.

Next time I will answer it!!

--------------------
3/08 CDC Positive
IgM 18++ 23-25IND 31++++ 34++ 39+ 41+++ 58+ 83-93+

CDC Negative
IgG 31IND 39IND 41+++ 58+ 66+

Posts: 274 | From oklahoma | Registered: Jan 2008 | IP: Logged |

AliG
Frequent Contributor (1K+ posts)
Member # 9734

posted

There are phone numbers for Dr McFarland & staff at the link above.

You can check & see if it could have been one of them.

I guess it could have been a study coordinator also.

Please let me know what you find out! [Big Grin]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006 | IP: Logged |

AliG
Frequent Contributor (1K+ posts)
Member # 9734

posted

I e-mailed McFarland directly because recruiting wouldn't refer my questions unless I gave them personal info.

We'll see what happens. [Roll Eyes]

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006 | IP: Logged |

dmc
Frequent Contributor (1K+ posts)
Member # 5102

posted

thanks, I posted it on alternative MS websites/message boards I visit.

Posts: 2675 | From ct, usa | Registered: Jan 2004 | IP: Logged |

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