I'm Cat, and I'm new to this board but I'm a life-long (nearly) Lymie. I've had it since I was three years old- over twenty years.
It was misdiagnosed as an allergic reaction to Ceclor despite a bulls-eye rash, tick bite, joint swelling, etc. when the blood test came back negative in 1987.
Two years ago I started treatment on oral ABX and after two four month courses of Doxy I experienced seven months of bliss for the first time ever!
However, things went south from there- I lost 30 lbs (eventually my weight dropped to 95- I'm 5'5), started throwing up frequently, developed worse joint and muscle pain than ever before, sensitivity to light and noise, fainting, heart palpitations... honestly my wrists hurt too much to type it all here.
I also tested positive twice for RMSF prior to the return of my symptoms.
When I did not respond to oral ABX after three months this time, I was referred to an oncologist by my LLMD. After months of a futile search for cancer and extensive testing (every test known to man, as my dad put it), I went back to the LLMD.
In August of 2007, after I lost my job and became confined to my bed, she finally started me on PICC ABX.
I have tried several kinds of IV ABX- my liver does not seem to care for most of them.
At this point, while I have had slight improvements (my heart is somewhat better and my fevers have been lower), I am confined to my bed, unable to read, drive, keep down food, or do anything else that most non-Lymies take for granted.
I can't even walk to the bathroom without fainting, falling, or my leg muscles refusing to support me. I am completely immune to alcohol and pain medication (not that I have been drinking on IV meds, don't worry).
I am co-infected with Bart, possibly also still RMSF, and maybe Babs. I am IgeneX positive for an old but active Lyme infection.
I hope it was appropriate to give the whole story- I know it is long! I tried to break it up- being a neuro-Lymie, I have trouble reading block text, too.
Anyway, I've been dealing with this for a while, so if there's anything I can do to help someone just ask. It's nice to know there is such an active support group available for the days when this disease goes from bad to worse!
Cat
Posts: 54 | From Virginia | Registered: Jan 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Welcome, Cat! Sorry you're doing so poorly right now ...
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bettyg
Unregistered
posted
cat, welcome to the board, and so sorry to read all you have had happening to you for 20 years!
you mentioned you've not worked now almost 5 months. ARE YOU PLANNING ON FILING FOR SSDI, ss disability insurance benefits??
if yes, unless you have a family member who can do the EXTENSIVE PAPERWORK for you, hire an experienced disabilities lawyer and one familiar with lyme, fibromyalgia, chronic fatigue.
use the last 25 pages of the newbie pages whick is ALL SSDI info galore; pay attention to CONNIE MC's forms at the end which are the MOST HELPFUL! good luck.
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posted
Thanks for the messages, guys! I realized after I read it that my story sounds awfully depressing and I didn't mean for it to, this isn't much fun but I'm mostly coping okay... and it's only since I was "cured" and relapsed that I have been so seriously ill, I was just sickly for the first 18 years.
Bettyg, I did attempt to apply for SSDI as soon as I lost my job, which was actually back in June 2007.
I had only worked for five months, however- I just graduated from college in January 2007. I was told that since I had not worked for pay for five years that I did not qualify for short term disability.
I was told by my LLMD that it is impossible to be sure I will be sick for a full year. I had trouble even getting a temporary disabled parking pass form from her (I've yet to see it).
I will ask someone to look over the information you suggested (my pupils are frozen and I have trouble reading), but does what I was told by SS and my LLMD sound typical?
Because of my age and the fact that I was just starting out when I became incapacitated, I have absolutely no savings in addition to no income. My father covers ALL of my bills, but I hate to ask him to pay for a lawyer too unless it is an open-and-shut case.
Thanks very much for your help, and I did read as much as I could of the message you sent when I registered- the information was great!
Cat
Posts: 54 | From Virginia | Registered: Jan 2008
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Cat it won't cost you anything up front to hire an attorney for SSDI. If you win the attorney is paid out of back pay and there is a cap on how much they can get, $5300, or 25% of back pay, whichever is less.
I can't believe your LLMD won't let you have a parking permit, that's ridiculous. From what you've written you qualify in VA. My LLMD had no problem filling out my paperwork.
To qualify for SSDI if you become disabled before you are 24 you need 1.5 years of work during the three-year period ending with the quarter your disability began.
Hope this helps.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Thanks, Lymednva- this is going to sound like a silly question, but do you know if you had to get paid for working and if it has to be consecutively?
I only had one paid job in college (during a summer break), and it was only for three months, and one for six months after college but I might have had enough unpaid internships? I took classes every summer except that one and did internships during the year instead of working for pay.
I probably do need a lawyer, at least to pose these ridiculous questions to, but I suspect my "work history" won't meet the requirement. Posts: 54 | From Virginia | Registered: Jan 2008
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posted
Hi Cat, Welcome to Lymenet. Sorry you have been so ill.
Here is it the handicapped person { or a family member} who has to get the paper work from the local motor vehicles, take it to the dr and have them sign/ fill it and then take it back to motor vehicles. Then they give you the tag.
Also check with your state police dept,You would have to do the leg work, but they can give you a temoprary one for abt 90 days. I don't think there were any fees involved.
For ssda you have had to work a paid job and paid ss taxes in, for so many quarters.Things like your internship or babysitting wound't count, cause you didn't get paid and/ or no taxes were paid in on the money you earned babysitting.
Take care, Dakotasmom
-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
Anyone with Cat in their name is cool with me*)! Welcome to LymeNet!*)! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I am going to go WAAAAAAY out on a limb here,,,feel free to cut it off behind me!!
Are YOU real 'real' sure you are seeing a real deal LLMD??? Can you verify that with somebody in your area that may know??(I wouldnt have a clue)(too far from HERE)
AND my other thought,,,has your co-infections been treated at ALL??? That MAY be why you dont respond,,,the co's CAN be holding you back!!
Sounds REAL strange to hear a LLMD sent you for other tests when you didnt respond RIGHT AWAY to abx!!!
AND the handicapped part,,,sounds like a few pills and out duck to ME!!! A real deal LLMD KNOWS your sick until you get well,,,,period!!
YOUR story is all too typical of ALL the others,,,WELCOME ABOARD!!!Stay around,read and learn,,,YOU will be the only winner for doing so!!!
You MAY wanna specificly look at the thread in medical board where someone asks Cave (LONG term lymie)how she got well. Treating the BART can be the key to better and better days!!
Cave is SUCH an inspiration to ALL lymies in SO many ways!!! She is a one person, lyme disease, wrecking ball!!!! Its people LIKE her that make THIS site FABULOUS!!!
You have just joined a family,,,feel the LOVE!!!unlike--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Wow, thank you so much for the warm welcome AND answering my questions, everyone!
DakotasMom: I have had a disabled permit before, so I am certain I am eligible- my LLMD was refusing to give me one because my appointment, while scheduled for 1.5 hours, was taking more than 15 minutes.
I appreciate the info about SS- I thought I had done the "right thing" by going to college and focusing on my studies and learning about my field... but I never expected to end up so debilitated. I'm blessed to have parents who are willing and able to help me.
Sarah: Thanks for the welcome (and the compliment on my name!)
justdon: I feel the love! It's nice to have a family- especially a sympathetic and knowledgeable one!
In reference to your question about whether my LLMD was "real"... I won't name names, but she was one of the authors of the ILADS guidelines. She was the doctor who diagnosed and treated my Lyme successfully after 18 years of not knowing what was wrong with me.
However, at our most recent appointment, she dumped me. She said I was taking too much time and needed a new doctor. I was very hurt, because I felt like though my progress has been slow, she promised me she would keep fighting if I would. I guess she didn't mean it.
Anyway, it's probably a blessing in disguise. I now have the opportunity to get a second opinion guilt free! My father has agreed to let me see Dr. L in A*, NY. I will likely have to find an LLMD closer to home, too, but I think that will be easy enough, thanks to my new family!
As for co-infections, yes, we've treated them- off the top of my head, I've used the following for Lyme or co-infections:
Doxy (two four month courses followed by six months of remission, followed by a three month course) Doxy and Ketek Biaxin and Clarithromycin IV Claforan Zithromax and Augmentin IV Clindamycin IV Zithromax w/Mepron and currently IV Clindamycin with quinine.
I've been perusing old and new posts on all the boards, and I'll be sure to look for the one from Cave!
Thanks again, y'all- I'm so happy I found you!
Cat
Posts: 54 | From Virginia | Registered: Jan 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Cat,
Don't worry about sounding depressing, I find you to be pretty upbeat considering all.
You must be very frustrated at this point. Your Doctor probably dropped you because you were no longer responding after many switches in abx.
Probably didn't want to cope w/ a treatment failure.....just my opinion of course.
Doesn't mean that there isn't some combo out there that might help you though.
Maybe a new perspective is exactly what you need. Several long time Lymies have recently reported improvement on Levaquin....great improvement.
I see that it is not listed in your rx list....maybe a new doc will give it a go. My guess is that your first rounds of treatment w/doxy addressed the lyme, but it is a co-inf that has you now.
None of this (what I have said ) is anything other than my random thoughts and opinions.
Welcome, and fingers crossed that your new LLMD will get you out of that bed!
Oh yeah, sorry, but you haven't worked enough quarters to qualify for SSDI....hopefully you are still under your parents medical ins. as you are a student????
Best, Rhonda
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Thanks, Rhonda. You are correct, I have not been on Levaquin, and I don't know why my last LLMD didn't try it!
Unfortunately, I got my BA in January 2007. While I had already been accepted to a graduate program for Fall 2007 when I became disabled, I will be 24 next month... my dad's insurance only covers full-time students up to age 23, and I was unable to start school on time last fall. (Fortunately my grad program is willing to take me whenever I am ready to begin!)
I have an individual health savings account, but the annual prescription maximum is $5000... as you know, it's possible to burn through that in a month or less when you're on meds like VFend, Mepron, and IV ABX!
If I had worked for a large company after graduation, I would have been entitled to as much as 18 months under COBRA when I lost my job (heck I would have gotten three months of leave under the FMLA, though I know now it wouldn't have been enough), but I was working for a non-profit organization with less than 25 employees, and less than 10 on the insurance plan... so I only got three months of group coverage after I was fired!
If my parents decided they didn't believe me or couldn't afford treatment, I would be 100% up a creek with no paddle... but for now they've been very supportive financially, and my boyfriend takes care of me on a day-to-day basis so their lives are not disrupted by my disabilities.
I wish I didn't have to burden them financially, but rules are rules when you're dealing with the government... so I'm just going to consider myself very blessed that I have family to fall back on.
Take care and thanks for the welcome!
Posts: 54 | From Virginia | Registered: Jan 2008
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posted
Hi Cat! I'm new to the board, too. I have an 11-year old with Lyme (my husband & I also have Lyme). Sorry to hear of your relapse.
Of the kooky things we've done to improve our health, the rife machine seems to be helping in addition to IV zithromax for our son. My husband & I are now just on the rife treatments alone. (We'll fall back on antibiotics with relapse, though!) We all get Herx reactions from the rife treatment - I just got over fever & flu-like symptoms from the weekend treatment. But after 3 years since beginning treatment with antibiotics (including IV), I have had some real improvement.
Hope to hear you're better soon!
Posts: 81 | From Iowa | Registered: May 2007
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I'm sorry to hear your child has Lyme. It is not easy to be a child with Lyme, or the parent of one, and I am glad you have had some success with your treatments.
This is a very friendly board, and I am happy to have found it-- you will be, too!
Cat
Posts: 54 | From Virginia | Registered: Jan 2008
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Cat..I'm glad you were at least able to get a college education under your belt. My daughter is a couple of years younger than you, and she is just well enough to attend 2-3 classes. She HAS to, or she will lose insurance coverage. She was denied disability.
Read everything on this board. Some medications work better for some things and some people. It's a very personal disease.
Sorry you are sick. It's not depressing, everyone here has been there, done that. Those not here have gotten better and on with their lives. It can happen!
Posts: 2903 | From AZ | Registered: Feb 2006
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I feel for your daughter. It took me 5.5 years to get my BA, and before that I was kicked out of my prep school for being sick too often. My education was definitely a journey.
I hope your daughter finds a treatment that works. There is a Lyme Awareness group on Facebook that is fairly active and we have many members who are struggling with college and treatment. Please tell her that we would be happy to have her, and I'd be glad to talk to her personally if she needs anything-- just send me a PM.
I was denied disability as well, and I am no longer eligible for coverage under my parents' insurance because of my age. It's a scary position to be in, and having family support is a blessing in circumstances like this.
Thanks for the welcome. I am happy to have found this board and I am learning a lot. I have an appointment with Dr. L in NY next week and I am optimistic about him finding a treatment plan that will work for me.
Take care.
Cat
Posts: 54 | From Virginia | Registered: Jan 2008
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