posted
I have been taking treatment for 2 months, and I am now unable to work because of the pain and herx. I'm in the process of losing my job because of being sick, have had to move in with my parents, and it seems like I'm losing all my friends. My family keeps telling me that it's temporary, but I can't help feeling like my life is over. It seems like the biggest things most of my friends my age have to worry about are what they will do this weekend, and what to get their master's degree in. I am "happy" for them, but very, very frustrated with my life. And to seems like every time I go to the doctor, there's something else wrong. This just me complaining, but can anyone relate?
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
i sent you a private message.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
bettyg
Unregistered
posted
Breaking this up for us neuro lymies to read.
Welcome blue; please hit enter often and double space between each paragraph for us neuro lymies so we may read and reply with guidance; thanks!
quote:Originally posted by blue23:
I have been taking treatment for 2 months, and I am now unable to work because of the pain and herx.
I'm in the process of losing my job because of being sick, have had to move in with my parents, and it seems like I'm losing all my friends.
My family keeps telling me that it's temporary, but I can't help feeling like my life is over.
It seems like the biggest things most of my friends my age have to worry about are what they will do this weekend, and what to get their master's degree in. I am "happy" for them, but very, very frustrated with my life.
And to seems like every time I go to the doctor, there's something else wrong. This just me complaining, but can anyone relate?
Welcome Blue to the gloom & doom lyme misery group of education & support 24/7.
Yes, you find out who your real friends & family members are that WILL provide you support and a shoulder to cry on.
I'm going to post my newbie links for you including info on filing SSDI, social security disability insurance, benefits ok.
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier.
I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
TESTING FOR LYME DISEASE ... 3 main LYME TICK BORNE LABS IN USA!
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 3 USA's Lyme testing labs:
IGENEX LAB: 797 San Antonio Road Palo Alto, CA 94303 1.800.832.3200.
(If the early test, called IGM, is negative; the later test IGG is NOT done!) Please see their web site: www.igenex.com CALL for their current prices effective OCT. , 2005 and
to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices! Example, have it taken Mon. - Wed. Afternoon tests show more positive lyme results!
Here is the site to PRINT THEIR REQUIRED FORM to send with blood sample. For me, I printed the FIRST option available on the forms.
Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!
NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers. Medicare patients do NOT have to prepay!
2. MDLabs from NJ, www.mdl.net see their site; they too require their own form. NO prices are listed; you must call their 800 no.
3. BOWEN labs from Florida, www.bowen.net 727.937.9077.
You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US.
They fax the results and then about a week later send the actual pictures.
NO way to file for insurance since it's only a brief letter you get back from them even WITHOUT a 501 federal tax no!
Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.
NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).
FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting! ============================
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.
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 many more links, as well as advice, in the "useful" messages in the Files area of the website. Go to http://groups.yahoo.com/group/Disinissues and click on Files.
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."
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 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.
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Blue,
I'm sorry to hear that you are so down.
Yes, things can get very frustrating. It's difficult to look at what your friends are doing and comparing it to yourself.
Your family is right. This is temporary. It may be more than a month, but if you are getting good treatment, then you will get your life back in control.
It's so important that you try to think positive. It really does make a huge difference in your body's ability to fight illness.
Remind yourself every day how lucky you are to have a supportive family. It's wonderful that your parents are taking you in and helping you. I know it's not ideal, but it will take a lot of stress off of you.
Also, try to find something you love that you can do. Maybe it's a part-time job, maybe it's making music, maybe it's knitting, maybe it's volunteering on lyme advocacy work. But try to put something into your life that you can do and that you look forward to.
Your life isn't over. Because you've found a diagnosis, your life is really just starting. The experiences you will undergo will change your life. You will be a person who understands real challenges.
It's hard. It seems unfair. But you can get through this.
-A
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
posted
Blue23- Hang in there!! I know what you are feeling right now.
I've also been doing treatments for 2 months. I've had difficulty working for some time too (its so frustrating)!
And, I think being "younger" makes it all the more difficult for me too- this is the time of my life I should be active and enjoying everything. Instead, I spend many a day sleeping away my day on the couch!
This lyme stuff is so overwhelming and scary. I've been trying to really focus on one day at a time.
I've been trying to stay positive and realize that this is going to be a slow process to recovery, but well worth the trip if I can feel better!
It is hard seeing everyone else going about their days never worrying about all the health issues that I worry about every day!
It sounds like you have a supportive family- cherish that and try to focus on baby steps to feeling better (even though right now, that may seem a bit overwhelming).
Hang in there!
Posts: 1 | From Missouri, USA | Registered: Apr 2006
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I can absolutely relate.
I became disabled and live with my mom. on disability and always broke.
Boyfriend left. Friends mostly moved on with their lives.
My little brother finished college before me and now has a job.
And all of that does suck. No way around it.
BUT it is temporary and you and I will both get our lives back. (I promise)
I am also very lucky that my family has been sooooooo supportive. When I couldn't walk or hold a fork or brush my hair
my parents took care of me... I dont know what I would of done without them.
I am sooo much better than I was a year ago. I know I still have a ways to go but I will get there.... and so will you.
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
welcome to lymenet!
you know it's funny. i am not young at all and see a lot of people my age or younger with ten times the energy and mental sharpness i have. it can really get me down.
also, all of those wasted afternoons on the couch are part of healing. can't keep going and going without that rest.
it gets better. honestly, it does!!
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
| IP: Logged |
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
woops
meant to say my age or older!!
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
| IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Blue,
I'm really sorry to hear you've been feeling down; I suspect there's not a person on this board who can't related.
Aniek's right, though: a positive attitude can take you a long way when it comes to healing and getting through this.
In my case, my LLMD put me on an antidepressant when I first started taking abx. When I protested, she said that depression is an actual Lyme symptom.
Even with the antidepressant, it hasn't been easy, but I've always been grateful she pushed and got me to do this. I suspect it's helped.
Also, you DO have a diagnosis and have started treatment. That's not just good news; it's very good news. Many of us went years and years not knowing what was wrong while our health degenerated.
Getting treatment means starting to get well...and that's incredibly hopeful.
I'm glad you're here and getting help, and I wish you the speediest recovery possible.
Andie
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[Frown]](frown.gif)
![[hi]](graemlins/hi.gif)
Printer-friendly view of this topic