Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Well my doctor was distressed to see the shape I was in at my visit on Saturday. Took me off the Ketek, Doryx and Plaquenil and prescribed Flagyl. I'm to start at 250mg daily, working up in steps to 750mg.
Sure enough, feel like I'm herxing just on the 250.
So now I am applying for Short Term Disability. My employer doesn't have their own plan; I will apply to the state.
It is all I can do to walk to the bathroom and/or the kitchen. I am exhausted. Joints hurt, etc.
I can only hope that Flagyl will be the magic elixir for me.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
Hi Monica..Thanks for the update. I too can barely walk to kitchen/bathrm. I have been considering flagyl too. Please let us know how it works for you...good luck! kt
Posts: 740 | From BC Canada | Registered: Mar 2003
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Posts: 1950 | From New Mexico | Registered: Sep 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Good Luck Monica :-) Thanks for the update. I hope the flagyl works for you.
Im glad that you are applying for shorterm disability.
It takes all i have too .......to walk to the bathroom. I feel much better that im not working and can just rest.
I have never seen our LLMD distressed so you must be having a rough go of it...I can only imagine from your posts.
Im going to keep you in my thoughts that the flagyl works...and you are able to work up to 750mg.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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bettyg
Unregistered
posted
Monica and Krazy,
BEFORE you flagyl, read my post, "I'M OK; police just checked her my health." It's about my severe FLAGYL reaction.
Also read TREEPATROL'S NEWBIE LINKS on flagyl experiences ... they aren't good.
Why "short" term disability? Here's my experiences on SSDI, social security disability insurance benefits app.
IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS
Hi! I know what you mean about memory & typing, etc....it's the pits!
I do suggest you join the FREE DISINISSUES and read thoroughly or just print it all off of the FEMALE MD with chronic fatigue, etc. she gives wonderful, detailed examples that DDS, disability reps, want to approve/deny you.
Also have you looked thru the ADULT APPROVED LIST OF IMPAIRMENTS? That's critical also!
note 1.04; look at the rest of the 14 other specific areas too....
I printed off 1-14 sections showing what brief guidelines were for each section. I used that against ALL my medical reocrds, 3" thick!! Then I went to their DETAILED specifics for the sections that applied to my illnesses!
TIMECONSUMING....TOOK ALL 7 WEEKS from my notice of my ALJ hearing date!
So you have NOT submitted your INITIAL APP TO SS OFFICE, correct? Good, you want this to be as complete as possible so they can NOT turn you down on the 1st step as they do us all!!
\============================================= What I did with an online friend was this: prepared a chart noting the specific section of 1 - 14 that my diagnosed illnesses showed the wording, dr. seen & date.
Example, 14.09 LYME disease is mentioned in but doesn't give any examples. So I showed 14.09 with my drs. name & date plus specific details about each visit where lyme symptoms were stated.
I hope you have a copy of ALL MEDICAL REPORTS...drs., xrays, all blood labs, etc.
It's critical that you KEEP A COPY FOR YOURSELF! ================================================
On mine, I showed the date mailed to ALJ & LAWYER PLUS I kept a copy. Then I went to copy center nearby & copied and mailed promptly to lawyer per his request.
WHY THIS IS IMPORTANT: if you have an ALJ hearing, request thru your local SS office to REVIEW your complete SSDI app at THEIR local office! When you see things you submitted with your writing on, don't look at them!
Look & read only the secretative RFC & MFC done by the the in-staff DDS DRS/PSYCHOOGISTS! You want to make copies of ALL the stuff they have & other stuff you don't have so you can use that info against them!
ACTIVITY DAILY LOG, ADL link is: http://f4.grp.yahoofs.com/v1/oHfvQzZLYvcfvmUv V4L_ayW4_l5PFECbH9UA2BR_YfE66JZ0ZSxttbcO7NZqu HpjUfnUxG9wWuH7WPXAzrR7YqCnrsO80V5hSxJwduQ/ Activities%20of%20Daily%20Living%20questionnaire
At moment, can NOT find MFC questionnaire, but look at site on links/files. It is there but not visible to my eyes presently.
NOTE: I'D DO THIS DIFFERENTLY NOW! SEND 1 COPY TO ALJ and 1 to your lawyer! Lawyer did NOT SEND MY REPORTS TO DDS STAFF PROMPTLY; they didn't see many things when they denied me although I had good medical info!
Examples, 2 RFC, residual function capacity done by PCP dr. of 26 yrs. & rheumatologist;
plus 2 MFC, mental function capacity, done by psychiatrist & psychologist....the 1st person was the one judge used in APPROVING my 2nd claim for severe depression/effective disorder & anxiety.
ALJ's don't like working with LYME, FIBRO, CHRONIC FATIGUE. MENTAL is on approved list of adult approved impairment list! So don't fight it, go with it!
================================================== IF YOU ARE TRYING TO GET SS DISABILITY INSURANCE BENEFITS ========================================== This message is sent upon subscription, and again monthly. Please let the moderators know if any of the links have changed.
There are several links found by clicking on 'Links' on the website or by going directly to
BETTY NOTE: Look at the female MD's DETAILED BACKGROUND right below this paragraph. Print off her detailed responses as to why she could NOT do her job, and then apply that to YOUR own job as to why you no longer can do any type of sustainable work now nor in the foreseeable future!
These links are a compilation of several areas of interest which are commonly requested and mentioned. They reflect the collected wisdom of this group. Check them out - you just might find the information you were looking for! Take a look at Files that are not specific to your situation, because they might be helpful anyway - what works for Social Security may work for LTD claims, what applies to CFS may apply to your medical condition.
The Welcome Message and Group Guidelines are also in Files, if you need a refresher on how this group works.
You must register with Yahoo to use the website, but note: Be careful not to permit your address to be put into the directory when you register. Put as little as possible into your public profile. You do not need a Yahoo address to use the website. Your email address is what Yahoo calls your "alternate address." Contact the moderators at [email protected] or for AOL subscribers: Click here -----------------------------------------~--> Disinissues website - http://groups.yahoo.com/group/Disinissues
DO NOT FORWARD ANY MESSAGE FROM Disinissues WITHOUT PRIOR WRITTEN PERMISSION FROM THE AUTHOR Do not distribute any member's email address.
NO MESSAGE ON THIS LIST IS TO BE CONSTRUED AS LEGAL ADVICE ------------------------------------------~-> Yahoo! Groups Links To visit your group on the web, go to: http://groups.yahoo.com/group/Disinissues/ To unsubscribe from this group, send an email to: [email protected] Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.
An online friend of mine from disinissues web site posted this info today, so I have copied it over here.
Subject: fibro/CFS disability info [Disinissues] what does an FCE. Functional Capacity Exam entail?
Lyme, fibro, & CFS support group members who are/will be filing for SS Disability insurance benefits, please go to the web page shown below.
There were 9 pages of info I printed below area where you can order from fibro network a 70 page packet. I too plan on including this info when I send my FINAL packet of info to chief alj before my June 16, 05 hearing...my last chance! =======================================
Please read the site mentioned on: WHY DISABILITY TESTING FOR FMS IS OFTEN MISLEADING ADVICE FOR FM/CFS PATIENTS AND THEIR DISABILITY TEAM.....
Also after this article are the following articles:
WHAT COULD BE CAUSING DELAYED-PHASE FLARES?
BENNETT'S METHOD FOR ASSESSING FUNCTION IN FMS
TECTONIC CHANGES IN DISABILITY LAW by lawyer Joshua Potter, CALIF.
MEDICALLY DETERMINABLE IMPAIRMENT REQUIREMENTS FOR CFS & FMS
DOCUMENTIONATION.VIEW IT AS AN INSURANCE POLICY
I printed this out in larger print for my eyes....9 pages! Will read it thoroughly and mark up 2nd copy to go to ALJudge for my 2nd hearing as medical evidence also....
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
hey monica,
i see there are some new twists and turns for you.
wouldn't it be great if things weren't always changing and not always for the better?
anyhoo
i have had good results for my neuro lyme on flagyl. i hope i can continue to take it. i pulse it 3 days a week. i'm also on doxy.
wishing you well......
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Monica, you have been such a trooper. I hope the flagyl, even though it can be a hard routine, kicks some Bb butt for you. Maybe it will make a big difference. In the meantime, I know driving and doing steps have been really hard and you do push yourself so hard.
Hope you can push through those herxes to some real progress. I will be thinking of you! Post us your progress. Kick back and have a well-deserved rest from the stress while you take care of YOU!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I appreciate everyone's advice and good wishes.
My employers know of this site; I have to be cautious about what I post lest it be used against me at some point.
Woke up in the middle of the night with the worst pain I have ever experienced behind my right knee. I could not walk to get myself to the bathroom.
I called for my son who fortunately was home and not visiting his girlfriend. It was 2am and he didn't know what to do! I took some Advil, laid back down, and slowly stretched out my right leg. About an hour later I was able to get up and the pain was gone!
I will keep you posted on what transpires.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
I just wanted to post a "thank you" to all of you who have been so supportive and helpful to my mother, Monica.
My mother is the bravest, strongest, and most beautiful woman I have ever known. It breaks my heart to see her suffer the way she does, but I know it means a lot to her to have this forum to discuss her illness.
A sincere thank you to you all -
Best wishes, Kaitlin
Posts: 1 | From New York City | Registered: Feb 2006
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posted
I have been on 1500 mg/day of Flagyl for a month, and it has helped my neuro alot. I seem to be having trouble with the IV rocephin and my gallbladder though.
Went to the ER last night, in so much pain it reminded me of being in labor, "au naturale" for 18 hours on pitosin. I was doubled over with stabbing ab pains in the GB area, radiating through to my back, horrible!
The ER was packed, and they were letting no one back. I was groaning and crying in pain. Then after about 2 hours the pain just stopped. We went home after waiting 4 hrs.
I see LLMD tomorrow, and am on saltine crackers today. I am so scared they will pull this line that I have waited so long to get...and my insurance approved it---go figure.
All prayers are gratefully appreciated! Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Jill, 1500 mg seems like a high dosage to me. Have you had pain like this before while on the Flagyl?
I'm glad your pain went away. It could have been caused by the rocephin or flagyl, I think.
Let us know what the doctor says.
I lost my gallbladder on Rocephin.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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bettyg
Unregistered
posted
Kaitlin, great having a Mom/daughter team on here. We have several. Glad she is getting support from YOU. You can learn from here too for yourself and teaching NON-BELIEVER family/friends.
Bettg == sorry I caused this to go SUPER WIDE, and have edited 3 times trying to find "culprit" making it go so wide; my apologies!
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