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Lyme Disease ForumsGeneral & Supportwhat can you tell me about FL-1953?
06/30/2012 12:32 AM
Bettyg
 
Posts: 26683
VIP Member
I'm an Advocate

mavs, check out this link taking you to every link discussing thisissue on lymenet.org ok Wink hope this helps you.

bettyg, iowa friend Wink

alex, that's where i got/posted what i did above, fyi only.

http://flash.lymenet.org/scripts/ultimatebb.cgi

i used their search found in middle of top line and typed in fl1952 fry lab left everything as is and hit search.

it brought up the following info; you'd have to reconstruct what i just told you to click on the hyperlinks there ok Wink

You searched for keywords: 'fl1953 fry lab' | 13 matches found New Search

Topic Date Forum

Fry bug 05-15-2012 Medical Questions

Fry Test 05-03-2012 Medical Questions

Decreasing magnesium is actually better for me. 04-27-2012 Medical Questions

Dental pain 04-10-2012 Medical Questions

For those on Ivermectin - How are you doing? 03-16-2012 Medical Questions

ivermectin 02-23-2012 Medical Questions

Question on FL1953 / Protomyxzoa 10-11-2011 Medical Questions

Fry Labs FL1953 Protomyxozoa Rheumatica 10-09-2011 Medical Questions

Dr. F -- interview .... interesting 05-29-2011 Medical Questions

Anyone with Fry Lab results 04-20-2011 Medical Questions

Restarting Mino 04-20-2011 Medical Questions

Fry Haemobartonella and FL1953 04-12-2011 Medical Questions

Toxoplasmosis. Want to start daraprim? 12-22-2010 Medical Questions

© 1994-2011 The Lyme Disease Network of New Jersey, Inc.

All Rights Reserved.

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.
Reply

07/01/2012 07:40 PM  Top
showmestate
Posts: 1
New Member

evelinawill

have you had a "Fry Test" and/or other testing?

Reasons for my inquiry, and other reference trivia:

1) I've never joined one of these websites prior to 5 minutes ago

2) Apparently these infections can coexist with one another AND can also coexist with other non-infectious pathology that can confound a "complete" diagnosis and therefore potentially limit effectiveness of targeted therapy directed toward a single etiology

3) Many of your past and current symptoms sound very similar to those I've struggled with

4) if my sense is accurate, I share your frustration with the current ignorance and arrogance of Western Medicine health care providers.

5) While its relevance is dubious, I happen to be one of the aforementioned with a meaningless "MD" behind my name.... I've just recently been blessed with a personal experience that has allowed me to come out of the 'stupid box,'

6) Based on my review of other posts, I guess I'm supposed to disclaim, and therefore I will: "any input I might have is NOT professional medical advice," but is rather and solely information and suggestion stemming from my PERSONAL HEALTH EXPERIENCE, as well as its preceding and subsequent passionate and ongoing research on these topics related to an illness that nearly put me in the ground.

7) Because i know myself, I likely won't be checking back every day.... but again, this is the only place that I'm a registered user, and certainly will be interested in the exchange of ideas on this forum.

8) in my particular case, Lyme disease has NOT been a diagnosis. Mine currently include Biofilm and FL 1953, minimal Bartonella of uncertain significance, and significant concomitant toxicity (which is likely the major component of my symptomatology) which was detected by Real Time Labs. While Lyme disease is apparently among the group sometimes referred to as the "great mimickers," the symptoms / diagnoses that you and I may share appear to have not been caused by Lyme IN MY CASE.

9) Finally, I was raised in Missouri, so skepticism is in my blood. So in my case, I was desperate, was skeptical, but clung to hope since it was all I had. Since I had no other options or explanations at the time, I sought treatment very recently on the off-chance it might help. While certainly impossible to be truly OBJECTIVE when one is personally involved and invested in a situation, I'm trying my best to remain a skeptic until any treatment benefits become inarguable. As you can imagine, this will be the ONLY way for my story to have a legitimate and credible impact on my colleagues. embarrassed? NO. Chicken sh--? NO. But my passion has always been the honor of trying to help with other folks' health. And in my current opinion, the only way to (possibly) help other health care provider's patients, is to provide a compelling and irrefutable story that has undeniable and complete veracity.

All of that being said, I'm less that 2 months out from "intensive treatment", and while obviously continue supplemental therapy at home, the trend toward improvement is honestly fascinating and certainly and undeniably a MASSIVE answer to prayers.

10) to the Forum Supervisors (or whatever the appropriate respectful title may be): I'm ignorant about forums, etc..... so please let me know if I ever come close to the line, or overstep the line of seeming to offer official medical advice--as my passionate interest and excitement about this topic could certainly cloud my judgement.

11) Lastly, to fellow "forum-ers," I'm a no-BS guy, I learn from mistakes, have always been open to and unoffended by others putting me in my place (or telling me to shut-up.... since I'm obviously long-winded).... so please don't hesitate.

Thanks for allowing me to participate, and for sharing your stories.


07/01/2012 11:44 PM  Top
Bettyg
 
Posts: 26683
VIP Member
I'm an Advocate

welcome show me state Wink

majority of us here are NEURO LYME and can't comprehend/read LONG PARAGRAPHS, so please use my posting guidelines below on BREAKING THEM UP so we can comprehend them.

the 1st part went pretty good, then you got long-winded. LEAVE IT ALL THERE; just hit enter twice after each short paragraph then we can READ IT ALL.

showme, go to my WELCOME LETTER LINK below, and i have some fantastic links/info to get you started.

i think i read you didn't know if you have lyme/co-infections or not, so let me refer you to this great one 1st ok.

dr. corson's KID'S EVALUATION applies to adults except meds/dosages are different. she goes thru the entire body and tells you WHICH DISEASES affect each body part. by the time she gets done you have a good idea what you MIGHT have, and can get a CLINICAL diagnosis which you are well aware of Wink

when i can read more of your long note, i'll offer future suggestions, etc. at that time.

hugs/prayers,

bettyg, iowa

***************

Welcome to MD JUNCTION! I'm so glad you found us! You’ve come to the right place for education and support!

Private messages DELETED in 30 days!

ARCHIVE, upper right!

My WELCOME LETTER is posted at the top of SUPPORT FORUM in sticky pin full of good info and HYPERLINKS ready to be read.

http://www.mdjunction.com/forums/lyme-disease-support- forums/general-support/2356916-bettygs-welcome-letter-wgood- beginner-links-

The most important things are at the top; MUST READ and print off as mentioned there already to start your lyme/co-infection journey with us all.

The 1st things to do are:

• JOIN LYME BOARD;

• Post in LLMD REQUEST FORUM for a LYME LITERATE md; see my welcome letter and the INSTRUCTIONS there if you are SPECIALLY FROM CALIF. Where it’s broken down into 8 NAMED AREAS.

• You’ll need to give me my calif. NAMED area where you live in the areas shown there in SUBJECT LINE plus if it’s for ADULT or a child; we need age of CHILD; some llmds have AGE restrictions.

• OTHER STATES will show the SPECIFIC NAME OF THEIR STATE and Qclosest, largest city to them in SUBJECT line plus adult or child; UNDER 21; we need their age!.

http://www.mdjunction.com/forums/lyme-disease-support- forums/llmd-info/Itemid=217/func=post/do=reply

• Also, we’ll need the following info in your request post:

in your llmd request, please EDIT and add more info ok.

Are you UNDER AGE 21;; if yes, I need your age shown as some of our llmds have AGE RESTRICTIONS; thanks!

how long you've been sick

if you've tested for lyme/co-infections;

which labs doing work for which specific test, etc.

did you have western blot igm/igg done by igenex?

if yes, what were the POSITIVE & INDETERMINDED numbers; NOT negatives.

thanks for understanding; just EDIT your post. you can find all by going to left MY DISCUSSIONS, click on it.

after you add more, a LEADER will send you names ok.

I RECENTLY RETIRED AFTER 6 LONG YRS. OF DOING THIS!

Betty’s suggested posting guidelines:

NO ALL CAPS POSTS; they are illegible to me/other neuro folks!

Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend; example, me, 42 yrs. neuro chronic lyme, so we are UNABLE to comprehend and read. Thank you for helping us help YOU 

Please post in short paragraphs like you see below or look at a few other posts, but we neuro folks need them short.

1-2 sentences MAX per paragraph and hit ENTER TWICE to double space between each paragraph. We’ve lost our comprehension skills to read solid block text.

We neuros lose our train of thought if the sentence is broken up in the middle; so please keep an ENTIRE sentence together as ONE. hugs

For easier reading, please edit your post. You can break up your longer paragraphs into smaller paragraphs. Please hit

ENTER key twice after each paragraph.

Go to left hand corner; click edit send. Then go to bottom and click SUBSCRIBE TO THIS DISCUSSION.

Thank you for posting in a manner that makes it easier for all to read and help others.

Bettyg, Iowa activist FOREVER Wink

**************************

YES, be prepared to PAY UPFRONT!

i've heard of some requiring down payments; i wasn't aware of that one at all!!

very FEW accept insurance; why?

insurance co. allow 7 min. per patient; we can hardly say hello in that time!

you also have to follow INSURANCE'S GUIDELINES ON TREATMENTS, IDSA/infectious disease drs. socieity guidelines... BAD NEWS FOR US!

by NOT accepting insurance, they can practice ILADS/intl. lyme and associated disease lyme guidelines ... treating you longer than 4 wks. of antibiotics, herbals, and alternative therapeis.

they allow 30-60 min. appt; longer 1st time; you pay accordinatelly for those appts.

ACCEPTING INSURANCE; they get very little $$ to pay the staff/overhead of building/utilities, etc.

many call patients day before to make sure they will be there; MANY DO NOT SHOW UP NOR HAVE THE DECENCY TO CALL SAYING THEY ARE NOT COMING!!

they could get those close by to come in but NOT being called; they are OUT THE MONEY and having one hell of a time meeting the bills.

our LLMDS are NOT RICH by any means!!

i hope this answers your questions so you understand what THEY are going thru too.

hugs/prayers,

bettyg, Iowa activist forever

RETIRED llmd coordinator for 6 yrs working directly with these drs/former group leader

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.

07/02/2012 12:08 PM  Top
lymeinmich
 
Posts: 1074
Member

I talked to a woman from Canada who had this. She had a great youtube video out there but recently changed it to private. If I find her website I will post it.

She treated for Lyme for 4yrs I believe with little to no improvement.

Her family flew in a Dr. that tested her through FRY labs and It came back + for FL1953.

He immediately took her off abx and put her on anti malaria or protozoa meds. I believe Mepron and Malorone.

She also was put on a fat free diet. No fat at all.

Last I talked to her she was 95% well, and this woman was in very rough shape.

She had horrible head and neck pain that would make her pass out. She would lay holding her head and just scream until she went into what looked like a seiure and passed out.

They are not sure at what point she was rid of Lyme, but kept treating unsuccessful for years with antibiotics Sad

FL1953 is a protozoa and does not respond to abx, only anti protozoa meds. It is a babesia like disease.

If I can locate her info I will send it to you.


07/02/2012 02:02 PM  Top
mem1605

lymeinmich.....i did talk to the woman that you are referring to. Smile she is mailing me her dvd w/ her experience. thank you for being so sweet!

07/03/2012 11:10 PM  Top
Bettyg
 
Posts: 26683
VIP Member
I'm an Advocate

showmestate, I see you were back on the board tonight.

PLEASE break up your above lengthy post so we neuro lyme patients can read/comprehend it. we lost our comprehension DECADES ago.

thanks for helping us to help YOU Wink

bettyg, iowa activist

42.5 yrs. chronic lyme

35 yrs. MISDIAGnoSED BY 40-50 DRS; UNACCEPTABLE!

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.
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