My name is Carlie, and I have had lyme off and on for I am not sure how long. I am 58 years old and remember feeling pretty crapy since I was young. Not sure where I came in contact with "the" tick that caused my lifelong illness. My Mother loved the woods, and outdoors. As a child we would wade in the area cricks, mushroom hunt, and go on all night fishing trips that many times were not planned. We got ticks on us so many times that I could not count. We just pulled them off, or Mom would burn them with a match head, and they would let go. I was married at 19, and recall beginning to have numbness in my right arm, and began aching in my joints. I was diagnosed with lymes disease in 1995. By then It had progressed to my left leg, and now all my joints were affected. Took antibotics for several months, felt better, and did not return to the doc. A few years passed, and I went to a different infectious disease doc. He said he believed I never had lymes disease, that I had fibermylgia. A few weeks ago I went back to my orginal doc b/c I now am a mess, with many of the symtoms of late stage/chronic lyme. I live in a rural area in the far Northeast corner of Kansas. Here, there are few doc. that believe lyme can happen here. Needless to say It can happen in the midwest!
Thanks for listening! Carlie
[LIST]
-------------------- Carlie Smith Posts: 20 | From missouri | Registered: Feb 2006
| IP: Logged |
MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
I'm glad you went back to the original doctor, and I hope you find relief soon.
It can get better it just may take awhile to erradicate.
Welcome to the board and if you have any questions you'll get many to supply the answers. Check out the Newbie Links if you haven't already.
This is a great place to vent also as everyone here can understand where you are coming from
Good luck.
MA
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
| IP: Logged |
Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Hey there! Sorry you had to find this group, but glad you are here.
I have had Lyme off and on for over 6 years now. I may have contracted it as a kid though so have probably been sick with it a lot longer.
I am 33-feel like I am 85 most days. In fact I think there are a lot of 85 year olds who feel better than I do! I have 3 young kids-all who are healthy thank heavens!
I don't live too far from you-im in CO. I hope you get back to good health again very soon. This group is great and can give you sooooo much information!!!
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
| IP: Logged |
It sounds like you have what many of us on this board also have, so we hear ya and understand the pain and frusterations you must be going through.
Hang in there, browse the board & learn as much as you can, ask questions whenever you are not sure of something, get support and become your own advocate on your road to recovery.
We are all like a family here and you are welcome to join us!
Posts: 90 | From Maryland | Registered: Jan 2006
| IP: Logged |
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Hi there!
I have some similarities to yours--diagnosed Lyme at 18 yrs old...took ABX for only two weeks and felt better for almost 10 years!
But it came back.
And I treated more aggressively. IV and orals for months.
And it came back again. most likely coz of steroid shot and not treating the coinfections.
Please treat for all coinfections this time around. It will make a difference in your "remission" time and how well you feel.
This board ROCKS! Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
posted
Hi Carlie! Your story sounds a bit like mine! I believe I've had LYME at least 47 yrs. I was dxd with fibromyalgia 25 yrs ago. Found out it was LYME 5 yrs ago.
I've been successfully treated by one of the best LLMD's in the country. You need to get to Springfield, MO ASAP!!
Check your private messages!
Editing to add:
Carlie...your private message capability has been blocked. You'll have to undo it or PM me for the info.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
Sounds like we have something in common, that is the length of time we have been ill. What anti biotic were you treated with, and was it oral, or IV? I have lost my reflex in my left ankle, and have not had it for some time. I have been in lots of pain since Christmas. I also have much muscle and joint pain, as well as heart palpatations, lots of brain fog, and what was diagnosed as menyiers disease. Did you come back completely from all your symptons I would like to think there is help for this crazy disease. Do you know if lymes can be passed on to your unborn child? My youngest daughter has quite a few of the symtoms I started with. Also, do you know if it can affect the birthing process. I had a terrible time with my first child, and seven years later when I had my youngest child, they had to do a c-section?
It was good to hear from you!
Carlie
-------------------- Carlie Smith Posts: 20 | From missouri | Registered: Feb 2006
| IP: Logged |
bettyg
Unregistered
posted
Welcome Carlie to the board.
I'll break up your LONG 1st post, but would you do your 1st reply below. thank you. We have several folks who have lost the majority of their vision to lyme so this helps them immensely.
We neuro lymies can read/comprehend only 6-8 lines of text in paragraph and DOUBLE ALL paragraphs please. Thank you for helping us, help you out.
fyi only, we have lyme disease; not lymes as drs. call it; we are lymies! welcome to our club!
Were you tested for co-infections? See below for 3 LYME diagnostic blood labs.
quote:Originally posted by Carlie: Hi everyone!
My name is Carlie, and I have had lyme off and on for I am not sure how long.
I am 58 years old and remember feeling pretty crapy since I was young. Not sure where I came in contact with "the" tick that caused my lifelong illness.
My Mother loved the woods, and outdoors. As a child we would wade in the area cricks, mushroom hunt, and go on all night fishing trips that many times were not planned.
We got ticks on us so many times that I could not count. We just pulled them off, or Mom would burn them with a match head, and they would let go.
I was married at 19, and recall beginning to have numbness in my right arm, and began aching in my joints. I was diagnosed with lyme disease in 1995.
By then It had progressed to my left leg, and now all my joints were affected. Took antibotics for several months, felt better, and did not return to the doc.
A few years passed, and I went to a different infectious disease doc. He said he believed I never had lyme disease, that I had fibromyalgia.
A few weeks ago I went back to my orginal doc b/c I now am a mess, with many of the symtoms of late stage/chronic lyme.
I live in a rural area in the far Northeast corner of Kansas. Here, there are few doc. that believe lyme can happen here. Needless to say It can happen in the midwest! Thanks for listening! Carlie
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.
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!
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. 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!
IP: Logged |
posted
"Welcome Carlie", I myself was raised in Massachusetts on the Cape and it was common for me to pick Ticks off on a daily bases (45 yrs. ago). If I only knew than what I know now. I'm 52 & try to stay in a positive environment, Keep an open mind(what mind I have left) and learn about this controverial Disease. Knowledge is Power! "Peace be with us All", Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 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!
![[hi]](graemlins/hi.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic