posted
Hey there. I just joined this today because I found out last night at 1:30am that my mother has Lyme Disease. She's known for a month and just decided to call me and tell me last night. We are very close, and I think she just doesn't want to tell people. I am really worried. I've spent all morning trying to research the disease, but a lot of the sites I've found don't use leiman's terms, so I'm having trouble. Any recommendations?
I'm worried about her because I think she probably was diagnosed late. I don't think she has a rash, I think she has symptoms like numb arms and very very soar feet. Fatigue. Depression (which she already had, probably before Lyme). I just feel a little overwhelmed and found this site in my searches. I thought I'd write to see who else is out there struggling with this.
My mom is 51 and young and fun and I hate to say it, a little irresponsible when it comes to her health. I just want to do everything I can to learn everything about Lyme Disease so that I can monitor her and make sure she's taking care of herself.
Anyway, I'm new... thought I'd post. Have a merry christmas.
Posts: 11 | From Boston | Registered: Dec 2007
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Hi Jill,
I'm sorry you had to join this group, but I'm glad you found us. You will find a huge amount of sufferers, just as your mom here, so I'm sure you will get a lot of help and guidance.
I think the number one piece of advice is to make sure you get your mom to a LLMD (Lyme Literate Medical Doctor). If she hasn't found one yet, you can post over in the doctor's section of these bulletin boards with the state she resides and someone can help you.
Also, I'm sure Betty will come along and send you a newbie link with a TON of information that will get you well on your way to understanding this disease.
You sound like a very caring daughter and she's lucky to have a daughter that is out there trying to learn about lyme for her. Good luck and feel free to ask all the questions you need.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Dont judge the few responses you get here from the caring group THEY are!! Its the holidays time frame AND it is VERY slow these days!! Everybody is family timing it about NOW!!!
Just wanted to welcome you aboard,,,and thank you for being a kind and wonderful daughter!!
There IS tons of info here,,but more importantly the CARING people!!
I am thinking your mother was still in shock,sorta, and getting her head wrapped around the idea of HAVING this disease,,,plus the relief of KNOWING whats wrong!!
She also needed a steep learning curve of finding out what this really is,,how to treat,,,and seriousness of it all.
I can say from first hand experience,,,"I THOUGHT" take a few pills like any other old infection,,,and be well!! NOT!!!! I really thought I could outrun this one too,,,nay!!!
Just understand and dont say stuff like "Your still sick with this after THIS long??" I hear that from people that OUGHT to know better,but dont!!
Lots of other reasons to stay on the QT ,,,like work reasons,,,family support,,, people shunning a sick person(natural),,, and NOT knowing what to say!!!
Hope this helps,,,stay around, learn, read,post!!!like--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Thanks to both of you. She might be a little in shock. In fact, I definitely think that is the case. But she also didn't ask the doctor any questions about it (that I know of). I said "so that would explain your feet, how they were swolen this summer for no reason, and why they hurt you so much" and her reaction to that was, "I doubt that it's related. I didn't ask."
I am just freaked out that this is bigger than she thinks it is. I don't want her to ignore it. Because if it's not affecting her in a huge way now, it doesn't mean it won't in a few weeks, months or years. I am starting to see that by reading posts on this site.
If anyone has a recommendation of a website or book that would explain in simple terms what this disease is all about, I'd love to know.
Happy holidays everyone.
Posts: 11 | From Boston | Registered: Dec 2007
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Justdon is right...more people will be on to welcome you.
bettyg should be sending you a HUGE information package...She is wonderful that way.
I can't remember who it is that always posts the great list of possible symptoms...maybe californialyme or lymetoo...but, I am sure that will be coming too!
That might help a bit with sorting out things with your mom's symptoms.
I know feet are a big thing for me, extreme nerve pain in my toes and it feels that someone is putting an ice pick through my ankles at times.
Please try and enjoy your christmas...more people will be on to respond (they are probably just tryingt o get ready for the holidays)...you have come to the right place!
Becky
Posts: 68 | From Massachusetts | Registered: Nov 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME to LYMENET*)!*! !*)!**!)*!)*!)*!)!*)!!
It is important she has a doctor who follows the ILADS guidelines which are available at ilads.org- otherwise she could get under-treated. I would go to the Seeking Doctors column and ask for a doctor in her area for her- if she is already seeing the one you get advised to see, she is in good hands!!! Many doctors do not know as much as they should about TBDs. She should have been tested for Babesiosis and both kinds of Ehrlichiosis aka Anaplasmosis- HGE & HME if she has been diagnsoed with Lyme- as they are common co-infections in ticks and in people.
It can also be helpful to go to a support group in her area because these diseases run in strains and strains form one area often share the same treatment vulnerabilities or diseases characteristics- you can learn a lot from other people in your area about what can work well for you- if you're lucky- and it is nice to have the support- too- Support gorup listings are in the left hand column of theis screen in the listings there-
Welcome welcome WELCOME- Nice to have you here- 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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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Welcome! Your mom is lucky to have you on her side. My kids have taken years to come around, and my daughter, the youngest, 25, still doesn't get it.
Often when we go to the doctor's office we are so overwhelmed by all the info we receive that we have difficulty processing and comprehending it all.
I am lucky. My LLMD prints out everything for me. I get a med list as well as any changes I am supposed to make that we discussed during my visit.
After my first visit with him I came home and cried, I was so overwhelmed by it all.
I agree that the first thing you need to do is be sure your mom is seeing a LLMD.
Sometimes we have to travel to find one. Some of us are lucky enough to find them in our "backyards," so to speak.
Be sure she is tested for co-infections, as well as getting a Western Blot from Igenex Labs in CA. A LLMD will know all about this.
Even then, if she has actually been ill a long time, as you suspect, her tests, may not come up positive.
Lyme is a clinical diagnosis, based on tests, medical history and ruling out other possibilities.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
The co-infection of bart comes to mind for the feet problems!!
A GREAT quick resource would be on (Off topic) page and read Lymetoo's thread of notes she JUST posted last couple days!! In there is COMPLETE list of sxs for lyme and some co's. GREAT info for a new learner!!
(Worthy of 'printing' too)
Bet sharing most of this stuff with your mother MAY assist her to 'learn' also!! We never KNOW enough.
I completely spaced out her possiblely NOT seeing a LLMD that dxed her,and a maybe "duck". Just that a dx is half the battle with the medical folks,,,so what meds is she on??? (IF you say 200 mg of doxy for 3 weeks I am gonna SCREAM duck!!!!)
Thanks for listening!! to--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
I don't have much to offer other than to tell you that your mother is very lucky to have such a concerned and loving daughter!
Lymnet is pretty much a 'ghost' town right now but others will be along with lots of support for you and your mom.
You've come to the right place!
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Welcome and Happy Holidays to you.
My Mom tested via Igenex with several Lyme specific bands
However, doesn't "think" she has it.
There is just so much information that it is both overwhelming and frightening.
Especially if you have any neuro issues with Lyme.
It may be a good idea to print out some info from the Newbie list.
Give the info to your Mom slowly and then maybe discuss it with her.
If your Mom has a computer, invite her aboard.
Please make sure your Mom is going to be treated by a Lyme Literate Medical Doctor.
I was so relieved when I found out I had Lyme....of course I had no idea
Exactly what that meant other than I wasn't crazy.
Hang in there. Unfortunately there is nothing simple about this disease.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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bettyg
Unregistered
posted
welcome; you FOUND the RIGHT place; and we are here to help you!!
i sent you 2 separate pms: 1 w/LLMD names, and my NEWBIE, overwhelming package of goodies!
sent you 81 pages of symptoms long list, testing, disability, and much more including treepatrol's archive of over 1000 links of good lyme info!
SKIM my info first to determine what it is you are most interested in learning also just sent you my 87 pages of newbie package of links, advise, about FIRST to help you ok! now it's reading time!
lymetoo/TUTU'S list of symptoms per CO-INFECTION is in it, and located around 30 pages from the end BEFORE all the SSDI, social security disability insurance info and BEFORE you see the breakdown of states with lyme disease!!
each day it changes since i continue to add to my package!
it's arranged with the most important things in front from A-Z; 2nd part is also A-Z; then SUPPORT stories to help folks understand our INVISIBLE illnesses: but you look good, LYMEDAD'S STORY TO FAMILY MEMBERS, AND DAR'S TOY STORY!
we sure to look for them and print them out for your family to read when you are together for CHRISTMAS OR NEW YEARS OK! you need to understand some things to give your MOM SUPPORT as you are doing now!
another reason she's kept it to herself....DENIAL; we've all been thru it! it's been 3.5 years for me, and i still can NOT believe it!
another good one to print off is FIRST APPT. WITH LLMD, LYME LITERATE MD.
at beginning are links to DR. BURRASCANO'S ILADS 05 lyme treatment gudelines; print off!! valuable info, and read ILADS, international lyme associated diease society gidelines for CHRONIC LYME, WHICH IS WHAT YOUR MOM HAS!!
again, SKIM my info! i've given you things to do now and even take to your xmas gatherings so you can have group discussions.
ONE OF YOU NEEDS TO GO W/MOM TO HER FIRST 1 OR 2 sesions; 2 sets of ears are beter than one and NOT TAKING TOO! best wishes!! ********************************
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Welcome! Sorry that your mom had Lyme.
I just wanted to let you know that I started a Lyme Support group in Whitman, MA. Whitman is about 45 min south of Boston.
I can send you more info if you need it.
Try to enjoy your Christmas ok??
Melissa
Posts: 3905 | From USA | Registered: May 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Welcome!
Your mom is very lucky to have you worried about her and getting involved in this with her. Many people who have Lyme disease don't have anyone who understands or cares or thinks much of it -- many people, even most mainstream doctors think it's of no concern when it's a very real concern and a very debilitating disease. It's wonderful you are being an advocate for her.
Yes, her feet problems are most likely related to the Lyme. There's also a co-infection, Bartonella (which I have) that can cause feet problems/pain.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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