posted
hi my name is whitney im 14 and have had lyme for more than 7 years without treatment my symtoms are
.black out, faint
.hallucinate,hear things
.heart murmure,pain
.arthritis in fingers, toes knees, sholders, elbows, jaw
skin infamation,joint
.double vision,blurry
.headaches, legaches
.infections sinis,ear ect...
.nasea vomiting lost 30 pounds now 105 pnd
.disc dejenerative disease
.overy cysts
.dangerousely low blood pressure 70/40 normal is 120/95 or a little over
.dangerousely low amune system
.sleep all day not at night from 8pm to7am
.hair loss
.burning numbness
.loss of feeling
.extremly sensitive to sound and light just a tap on the table is debilitating
.seizure like attacks
.allergies
now things not related to lyme
.hip slipped
.broke femer in body cast for 3 months
.tumor taken out and cyst
.tonsils adnoids size of tennis ball
.gallblader taken out attack for a year 1/2 they say im the youngest person they had that delt with such a messed up gallbladder amagine having 40 babies a year the attacks were every day
sorry for so much info im sure im not the only one here with that much but i still have to get another hip sugery its over whelming but at least ill be able to bend it again somtimes i just think my life is ruined i never ever go out i dropped out of public school and don't have the energy to go from room to room i also can't sit upright without getting naseated, my chilhood has been taken away from me but im not fighting for me im fighting for the peaple i love
they say i won't be able to have human contact or have a child without a incredibly big risk of passing it on and the baby is very likly to be malformed or to die i also won't be able to breast feed either. i have always wanted a baby the only way for those risks to go away is lymeto go away and i don't see it in my future but i still have hope
i hope you all good luck Posts: 6 | From MN | Registered: Nov 2005
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posted
hee hee haahhaahhaa im a very sympathetic person and will try to get back to you all but i sleep constantly and will be at my real dads for 4 days sorry Posts: 6 | From MN | Registered: Nov 2005
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bettyg
Unregistered
posted
Candle, welcome to the board. There are other teens on the board; they talked about getting a teen area going for your youngins' .. hope you do. I don't remember their names.
Be sure to read at the bottom about NOIR sunglasses and eye sensitivity due to lyme ok!
Do your folks have health insurance & drug coverage? Hope so.
I hope your parents will get you tested real soon for lyme disease thru the western blot igm/igg blood tests and sent IGENEX, CALIF. See my info below about them and their special form to complete as well as PREPAY cost. You'll need to call their toll free no. for CURRENT PRICES. They explain what the tests consist of also.
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!
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Welcome Candle! I am so sorry that you have lyme and are dealing with so much, so young! If I were there I would give you a big, gentle hug.
My son is 18 and missed high school. He is room bound also. I still have hope that this disease can be conquered. Hold on to that hope you have.
Have you connected with other teens that have lyme? I would think that would be helpful.
Take good care, Karen
Posts: 1709 | From Maine | Registered: Jun 2004
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posted
Oh boy, not fair you have had to cope with so much! I'm so sorry, whitney. You didn't say what kind of lyme treatment you are getting now. I think it is too soon to say what the rest of your life will be like, so don't give up hope on some degree of normality.
Here is the website for a group that sponsors a forum for lyme teens. Don't know how active they are, maybe give them a try. But you are always welcome to come here.
I am going to send this message privately also, so it is waiting for you when you come back from your dad's, in case you don't know how to look at previous pages (the little numbers at the bottom of the page) because older posts get pushed down pretty fast here by newer posts.
Posts: 8430 | From Not available | Registered: Oct 2000
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My daughter is 17 and is battling many of the same symptoms and concerns as you.
She has asked several times what she will do when she gets married and wants to have children.
Most of the research suggest and the top LLMDs agree that as long as the mom is on appropriate antibiotics for the duration of the pregnancy the baby has little risk of contracting the disease.
Transmission to your partner is another matter but there are ways of implantation that avoid trading of fluids (lack of better word this morning).
Sex can still be protected and very fulfilling for both of you.
You still have several years to get this disease under control before you have those concerns to deal with but I do understand your concern.
I am 11 weeks pregnant and even though it was VERY unplanned, at least with this one I know what precautions to take to minimize the babys risk of infection.
With the other 4 I had no clue and unfortuneately they are all four positive and symptomatic.
Breastfeeding is a definite no. I am truly bummed about that because it was such a wonderful bonding experience with the others.
But even if not for the lyme, there are too many meds I must remain on, including the antibiotics postpartum, that would not be healthy for the baby.
I have no doubt that I can bond just as well with this one with a bottle and even though breast milk is healthiest it is only that if you are a healthy mom. It is not a marker of how good a mom you are. Sometimes I think it is pushed as such.
I think this leaves moms who cant with a feeling of failure or decreased self worth. It is a good mother/parent who identifies the risk and avoids them.
Best of luck with your treatment and God Bless!!
Cheryl
Posts: 204 | From kentucky | Registered: May 2003
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posted
Welcome, candle! I'm sorry you've had to deal with so much. When were you diagnosed with Lyme? have you been checked for babesia also?
So you haven't had any treatment for the Lyme? That's very frightening!!
I hope we can find a good dr for you who can get your life to a more normal state!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Hi, Whitney,
My heart is crying for you.
However, be strong.
Lyme is treatable with antibiotics and more effecient therapies will be available soon with today's technology.
Scientific researches are progressing very rapidly almost explosively.
Lyme is not a genetic disease. As long as you have a good genetic makeup, you would have a very healthy baby, that's for sure.
The invitro fertilization/implantation has become routine...
There are plenty of hopes.
Hang on there
Posts: 1078 | From Fairland | Registered: Apr 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Whitney,
Welcome. I'm so sorry to hear what you are going through. But I'm happy you found this website. I hope you find it helpful.
If you don't mind some advice, think about today and getting through this disease and forget what any doctor told you about your ability to have babies.
You have enough on your mind right now. What's important is that you focus on getting well. It is possible to get well. And you will have plenty of time to think about having a family.
Also, there are a number of teens on the board. You can do a search for posts.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am so sorry you are going through so much.
I have had constant symptoms since I was 10 (no one knew what was wrong with me till I was 23)
I know what mean when you say you feel robbed of your childhood.
At my worst I could barely walk or hold a fork. I was sleeping 20hrs a day and falling asleep during my own sentences when I was "awake".
Today I am much beeter then I was. Less pain and less fatigue. I can even drive and go places sometimes now.
And I know under the care of my llmd I will get better and be able to teach.
I am glad you have hope because there is hope. If I can get better, you can too.
And I am sure under the right conditions you will be able to have a healthy baby.
Please don't give up on your future. You can get better.
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![[Frown]](frown.gif)
my symtoms are![[shake]](graemlins/shake.gif)
![[Eek!]](eek.gif)
![[Big Grin]](biggrin.gif)
but i still have to get another hip sugery its over whelming ![[puke]](graemlins/puke.gif)
but at least ill be able to bend it again somtimes i just think my life is ruined i never ever go out i dropped out of public school and don't have the energy to go from room to room i also can't sit upright without getting naseated, my chilhood has been taken away from me but im not fighting for me im fighting for the peaple i love ![[Embarrassed]](redface.gif)
the only way for those risks to go away is lymeto go away and i don't see it in my future but i still have hope ![[Cool]](cool.gif)
![[group hug]](graemlins/grouphug.gif)
![[hi]](graemlins/hi.gif)
hee hee haahhaahhaa ![[dizzy]](graemlins/dizzy.gif)
![[loco]](graemlins/loco.gif)
![[kiss]](graemlins/kissing.gif)
![[bonk]](graemlins/bonk.gif)
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