bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Hi keebler:
I tried to PM you, but can't. I'm just curious if you could shed a little light for us newbies on your story. you seem to know so much and help so many.
How long have you had Lyme? Where are you in your treatment, etc?
Thanks.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I don't have energy to answer PMs.
About "my story" - I just don't "go there" - sorry. I just try to help others avoid some of the mistakes I've made or share what has helped me.
No LLMDs allowed in my state. After decades of being ill, loosing my last job in '93 and my car in '94, positive tests for lyme, babesia, erhlichia in '97. Told "no lyme in this state"
In 2008, dx with chronic active Cpn, HHV-6. Earlier one of the coxsackie viruses. Two genetic porphyrias in the mid-90's. Then genetic celiac. All good information that helps tremendously in my treatment choices.
When i had access to some funds, I did consult a couple LLMDs out of state but never had the funds for more than 2 months' formal treatment. I am truly allergic to many of the abx and my ears are so damaged that I can't do other abx that affect ears.
I've learned what I can and am pretty much on my own but, yes, lyme has ruined my life and I don't see much light at the end of the tunnel. That is why I work hard here to help others.
I'm trying to treat with about $40.00 a month. Not complaining as that would feed whole families in most of the world. I do have a rife I'll start soon but just can't understand what I need to know about the heavy metal stuff (or afford it).
My background in journalism helps and so has past access to many good NDs in my state (although only one who is LL - even if out of my reach). Two consults there taught me a lot.
My GP doesn't really understand lyme (but does not discount me as dozens did before) and he does understand the inner ear problems. But, there is no help there. He's open in that he just can't help me.
My story matters not, other than in providing reasons for others to get educated, have the best self care they can and treat this with utmost respect so as to better succeed in a timely fashion.
On the face of it, I am a failure in many, many ways. But the beauty is that I understand what went wrong and why. My mistakes can help others as I continue to figure out my way out of the maze.
I am a success in that I'm still alive and able to walk and talk (as long as there are absolutely no distractions). I've had to learn to walk, talk, read and write twice during these "coma" years.
I've had those who know about lyme remark they were surprised I did not die at various points in time. So, that's some success. But I can't go out at all. Can't have more than one person over for a short time and stopped even thinking about loneliness at that gets me nowhere fast. Past counseling in cognitive therapy pays off.
Much more on my list of things to do. There, I told you so much more than needed just in trying to put time line down.
Bottom line: lyme can kill. We have our work to do. It can be done. It's hard work but don't loose your soul in the process. Rather, find it. There are many ways to measure success. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I've often thought about organizing a 'send Keebler some funds' drive. If she's (I think you're female?) treating on $40/month, maybe someone can afford to up that by $15 or send you a gift certificate to Vitacost or something?
Anybody?
-------------------- Symptom Free!!! Thank you all!!!!
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- No. Please. I really appreciate the thought but NEVER is that my intent. Only if asked to explain why I'm not well after all these years, do I mention that budget is part of the deal.
My ears are, too. I have some breaks in my inner ear canal. So, it's not just lyme. Yeah, lyme may be the cause but now it's much more complex to solve. Surgery is one option is not on the table right now for many reasons.
Truly, there are millions of people on other continents (and our own) who do far better with so much less. Lets see if we can get clean water to everyone around the world.
Send mosquito nets to Africa. Really. Please. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I know you aren't asking, but you help so many people here, and many people here and at Lymefriends have pitched in to help other needy members. I'd say that you're in the category where a small amount would provide you with a lot of supplements you're probably unable to afford.
-------------------- Symptom Free!!! Thank you all!!!!
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Merci Beaucoup, mon cherie.
Really. I'm not starving. In a way it's a challenge. If turmeric and rife can bring me around, that will be helpful information. It's my own experiment, so to speak.
Look, I'm mostly here because I can't do anything else. My computer is in a closet and I can't think outside of this closet or stand up long enough to get much done.
Even sewing and mending summer clothes seems to require part of a brain not home right now. So, I'm here because I have to at least do something to stop the progression of lyme.
I also used to teach all sorts of things. So, here, in some ways - guess I'm teaching -- which is really just sharing stuff that excites me, mostly the herbal medicines that have helped me as best possible.
If I could sing, I'd sing. If I could play my guitar, I'd do that. But, for some unlucky ones tired of my same old "copy and paste" chapters - this really is about all I can do in between resting.
This board helped me learn how to write again. I'm very limited but it has helped me to formulate sentences and thoughts.
So, shifting, here. Support LymeNet. It costs to provide this site for all of us to learn more. Here's gratitude to LymeNet operators and all others who share tender moments and valuable details. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
You provide so much information to those of us who are just starting down this trail... thank you just doesn't seem enough at times, but know we do sincerely mean it!
Again, THANK YOU! TnFlowerChild Posts: 238 | From Jackson, TN | Registered: Mar 2010
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
-
Keebler,
Thank you for all the help you give to so many at this site!!!!
You have been through so much, and it is very kind of you to spend your time giving back.
Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Yes, Thank you Keebler
You have many times come to my rescue with your knowledge and wisdom..
I certainly appreciate all you do,
Posts: 1357 | From Massachusetts | Registered: Jun 2008
| IP: Logged |
MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
Keebler thank you for coming out and letting us know a little about your life. I remember just a couple months ago I asked you to share a piece of your life with us and you couldn't at that time.
And, thank you for helping us.
Diane
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
| IP: Logged |
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Keebler:
WOW..thank you so much for sharing. I had no idea. You have been a wealth of information to me and numerous others. That is a gift which I wish I could repay somehow.
keep the faith!
B
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
| IP: Logged |
Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Keebler, I just wanted to share that I think you are an AMAZING human being. Just amazing!
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
| IP: Logged |
Keep fighting and know that there are lots of people out there fighting with you.
Posts: 27 | From Tallahassee, FL | Registered: Nov 2007
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Thank you Keebler I have learned so much from you.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks, everyone. Really, my part here is really very small and, yet, it's overwhelming - so it's good that we have lots of people working together. And the internet has been great in some ways. There was no internet when I first got dx or I'd have know way more from the start. And it was many years after it was born before I had a computer.
I have to go for dental checkup in a couple days so I'm signing off my computer now. It will take about a week to get over it and that means no computer for a while - it's just too stressful on my nervous system.
Not just now, but always, I encourage everyone to search the web for answers. Yes, there's a lot to sort through but everything I've shared is usually easily found by just searching.
Bing.com is a good search engine as it's far easier on the eyes and the brain.
And remember the SEARCH feature here for past threads in the archives. So many questions have been asked and answered and there are dozens of threads with great detail on many subjects.
Popular Links and the Lymebrary, the left sided menu for Medical Abstracts, etc. -- www.lymeinfo.net - etc.
Of course, backing up, read from ILADS authors' works: www.ilads.org
Take care, out there. Learn. Live. Love. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
Keebler... you take care of yourself and if you need us during your dental recoop, we are here for YOU. Diane
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
| IP: Logged |
posted
Keebler, I think you sound like a person with an amazing soul. Thank you for working so hard to educate, and know that you are much appreciated.
Posts: 283 | From where the ticks are! | Registered: Oct 2009
| IP: Logged |
posted
So you're in the closet with Lyme - I didn't know!
All the best with your dental appt - and yes, you do help so many here - thank you, thank you -
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Now I just wish I could be as helpful and smart as Keebler.
I didnt know even a portion of ANY of this.
No wonder your tag of the tree house,,,I am sure it feels similar in your computer room as a tree house would.
The little I do doesnt hold a candle to Keebler's accomplishments.
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
posted
Keebler, May God bless you for all you've done for us.
Posts: 246 | From south florida | Registered: Mar 2010
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Keebler, as strange as it sounds, it always feels to me like you and I too similar. I mean, I don't cut and paste, but there was a time that I did! Nothing wrong with it by the way, I think of it as a way of pointing someone in the next direction in respect to the questions they have.
At any rate, I've been asked my story too, and I think that perhaps once I told it here, I can't even remember. I don't want to tell it. It's too long, too painful, too much of everything that it should not have been.
I deny myself opening curtains or windows -- not simply from light sensitivty, but from life sensitivity. Just looking outside sometimes opens wounds and grief. Seeing a world that you live in, but are not apart of experientially. It's the feeling you might have on holidays, birthdays. Even every morning. It's always there in the darkness. We know what we are, who we are, and perhaps even what might be, but there is this immense pain in the (so called) soul that it is too much to ponder it in the present.
At any rate, It is why I do the work I do as well. It is not wrong to be self-serving in the service of others. I would probably disappear and pass my work onto the next "me" if I was no longer afflicted the way I am by this disease.
So yeah, you don't have to accept compliments or even feel good about yourself when you know you do it first for yourself, and whatever the results are only a byproduct for others to consume and learn.
You're ok. Nothing wrong with being and coping the way you are in this present circumstance. I think you'd like to give and help others via something you really choose to do, rather than something that was forced upon you and thus by default it's why you have to give.
Am I wrong? Is this not how you feel sometimes -- perhaps always? If I'm wrong, then we're not so much alike, because it's exactly how I live.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I hate to bring this to the top again -- really, I'm shy. Outgoing in some ways; very shy in others. It also takes immense energy to share personal stuff. I just don't have that.
Yet, want to thank everyone who has replied - it's the polite thing to do, of course, but it seems out of place to single out one person as so many here contribute.
And -- I must reply to Metallic Blue's post above. Very poignant words there, Mike. Thanks for sharing such tender thoughts that really do strike a bell with me. I've had many holidays without even seeing another person. It's just not possible so I've learned to close the curtains on anticipation and focus on memories of good times past and hope for better in years to come.
I'm sure many here relate, too. You write very well but what really hits home is the content as well as the way the words so aptly fold together to strike a perfect chord.
Mike, I hope all is going well in Italy. Take care and do enjoy as much as you can.
A while back I heard that one small town in Italy banned car alarms or leaf blowers (or both?) and I seriously studied that place (I forget now, where exactly that is/was). Then I found that there a zillion stairs in Italy and, well, that was pretty much out of the question, especially since I saw very few hand rails.
I can't imagine how one would climb stairs without a good hand rail. I'm in awe even when I see someone on TV do that.
So, I hope you are able to navigate all paths, in all manners of speaking. Soon, I hope you can feel connection to all those with good hearts - for holidays or just any day. So, too, for all. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
I just read this post and know you've been there for me with answers or try to. Thanks. I've had this a long time and there's so much daily I've learned from you and others. I've been around this board a long, not as long as others, but it seems to never end. God bless and better days for all. Be well.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Keeb,
I just want to add something here because you are WAY too modest. When I read your many posts and contributions, I always marvel at the words and thoughts and tremendous insight that YOU personaly contribute ASIDE from the copy and paste.
I think you are an incredible human being putting in the time that you do to help others here while you also suffer. Sending Healing thoughts to you,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| 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!
![[kiss]](graemlins/kissing.gif)
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
I have learned so much from you.
![[Cool]](cool.gif)
Printer-friendly view of this topic