I found this board about a week ago and I've been reading a lot of the posts. I've had Lyme for six and a half years. I thought it was gone last fall, but then it came back.
I usually do alright with handling stuff like this, but lately it just seems to be getting worse. I've had Lyme since I was eleven and now I'm 18, and it just feels like my life is getting wasted and I can't stop it. Seeing all my friends start college and get jobs and me hardly able to do anything is really bothering me.
I thought it might help to meet other people with Lyme. I have a hard time keeping friends when I'm sick because I have a hard time thinking straight or going out and doing things. I'm always very nervous and paranoid and afraid to say the wrong thing, which is totally opposite of how I am when I'm feeling well.
I hope I'm posting this in the right place. I look forward to meeting all of you.
Holly
Posts: 19 | From Georgia | Registered: Feb 2006
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bettyg
Unregistered
posted
Holly, a BIG WELCOME to you; glad you found our board.
Before I forget it, there is a TEEN LYME BOARD. Please check if it is listed in Treepatrol's 12+ pages of links ok! Then you'll have your peers to talk to also ok!
There are a few younger ones on here, but I don't remember off hand if there are ones your age group as I am typing this.
Are you on a depression or anxiety pill for your paranoia, which is LYME related? That helps. I'll wait for others to chime in here, but wanted to give you some basic info & Tree's helpful links. See you around the board.
You did an excellent job of short paragraphs and DOUBLE spacing for us neuro lymies. We have some who have nearly lost their eyesight so you will notice larger fonts of print here & there. You posted in the correct section of general!
Welcome to this 24/7 LYME support group board! Start with TREEPATROL'S NEWBIE LINKS OK.
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! Here is the website, spread the word!
Yes, you posted in the right place. Sorry your lyme is rearing its ugly head again.
Seems to me there is also a forum on yahoo for lyme kids, but not sure how old these kids are. And really, at age 18, not sure you can be considered a kid anymore! But we are happy to have you join us here. Are you getting treated?
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by bettyg: Holly, a BIG WELCOME to you; glad you found our board.
Before I forget it, there is a TEEN LYME BOARD. Please check if it is listed in Treepatrol's 12+ pages of links ok! Then you'll have your peers to talk to also ok!
There are a few younger ones on here, but I don't remember off hand if there are ones your age group as I am typing this.
Are you on a depression or anxiety pill for your paranoia, which is LYME related? That helps. I'll wait for others to chime in here, but wanted to give you some basic info & Tree's helpful links. See you around the board.
You did an excellent job of short paragraphs and DOUBLE spacing for us neuro lymies. We have some who have nearly lost their eyesight so you will notice larger fonts of print here & there. You posted in the correct section of general!
Hi!
Thanks for the reply! Heh, I almost start crying reading posts here, and realizing that other people have the same problems I do. I'm sorry you guys do, but it's nice in a way, to know I'm not alone, you know?
I've been on all sorts of depression and anxiety meds. For some reason most of them make me worse or do the opposite of what they should, anxiety meds give me panic attacks, anti-depressants often make me suicidal. I'm trying to stay away from them altogether.
I thought maybe that was a Lyme thing? Does anyone else have that problem? I know these sort of things are caused by the Lyme. When I'm feeling well I am a totally different person, outgoing and I love to meet people and go places, and nothing can make me depressed. I hate the change that's happened again when the Lyme came back.
Also you were talking about vision problems... Last fall I was doing incredibly well in everything else but suddenly my vision got terrible. I was losing more and more every day, lights hurt and I couldn't even be inside without sunglasses.
I thought I was going blind, so I went to the eye doctor. He wanted to help but he couldn't find anything physically wrong with me, he sent me to another doctor who sent me to another. It got much better after IV Rocephin, but after I stopped that it's getting worse again.
Is this normal with neuro Lyme? For someone who's had Lyme for so long I don't know nearly enough about it. It's very nice to know that other people have it (in a way), just so I know I'm not crazy. Because I'm being told that I'm imagining things or being a hypocondriac. After a while you start to believe it.
Thanks for the links! I'll check out the other board and the links also.
[ 26. February 2006, 01:25 PM: Message edited by: Holly135 ]
Posts: 19 | From Georgia | Registered: Feb 2006
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quote:Originally posted by lou: Welcome Holly from Georgia!
Yes, you posted in the right place. Sorry your lyme is rearing its ugly head again.
Seems to me there is also a forum on yahoo for lyme kids, but not sure how old these kids are. And really, at age 18, not sure you can be considered a kid anymore! But we are happy to have you join us here. Are you getting treated?
Hi!
Yes, I'm being treated now. I have a great doctor, finally. When I got Lyme my first doctor refused to even test me for Lyme for five months. I got really sick really fast, and after I had to quit school and was in a wheelchair because I was so tired and couldn't walk she tested me.
Then my next doctor gave me IV meds for several weeks and then told me that was all they could do and the rest I just had to live with. I was an awful mess then.
I don't remember much about doctors from then until the one I have now. She's wonderful and thinks I can get well again and seems to really know what she's doing unlike most other doctors I've seen.
Most of the time I'm pretty optimistic about getting better, it's just times like these when I feel so bad and I just panic that it's never going to end. And that really scares me.
[ 26. February 2006, 01:25 PM: Message edited by: Holly135 ]
Posts: 19 | From Georgia | Registered: Feb 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hi Holly, the symptoms you have are very common for lyme disease. It appears that you just weren't treated long enough the first IV rocephin go-around. You'll need to find a doctor experienced enough in lyme to treat it.
Post in the "Seeking a doctor" forum and someone will send you a Private Message on a doc near you that can help. At your age, and with adequate treatment, your prognosis for a full recovery is very, very good. Continue to read this board and stay in touch, you'll learn an awful lot about this disease.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
I have had severe neuro lyme and in tx a year. I found this board not too long ago. There are a lot of wonderful people here that give each other the greatest support in the world.
I live now with my parents. I'm 150 miles away from the place that I called home for 20 years and all of my friends there. Lyme is an isolater, but, we here are all equal and supportive. You take very good care of yourself and get good tx from a LLMD. Welcome aboard new friend. Stay strong and may your journey takes you toward better health and sunnier days.
Posts: 719 | From Delaware | Registered: Jan 2006
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posted
Hi Holly, Welcome! I'm glad you found this group. Lots of support, lots of information and lots of humor too! I have a daughter who just turned 20. I will see if I can get her to come on and meet you. She has had similar experiences to yours. Hang in there. You have good company now.
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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posted
Hey Holly! I'm glad you're on here! I'm lymeout's daughter, and I would love to talk! Send me a private message if you'd like to!
-------------------- "Faith is the confident assurance that the things we hope for will happen; it is the evidence of things we cannot yet see" - Hebrews 11:1 Posts: 3 | From Virginia | Registered: Oct 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Hi Holly,
There are lots of people here that are your age group. I am NOT one of them, darn!
I think I got into trouble the last time I said this but at risk of it again, I am 156 years old.
And it isnt a typo, just the facts madame. Because they say you are as old as you feel!!!
Hope you get well faster than anybody ever did, set a record for us, okay??? Because I remain--just don-- still sportin a sore noggin!!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Hi,
I used to be 18 once.... eternitys ago
I am 29 now. I have had symptoms since I was 10 years old..... I did not know that I had lyme until I was 23.
I have been disabled since I was 23.... So I know how hard it is to keep friends when you are reall sick.... near impossible.
I also know how hard it is to watch everyone move on with their life while I seem to be stuck in neutral.
My little brother went through college got job and is living in his own place...
I can't work can't go to school and I live at home with my mom....not exactly the life I planned,
The pain was so bad for several periods of time I could barely walk couldnt hold on to a fork etc... younger people (and I am even including people in their 30s which I know is near ancient to you) they dont deal with that stuff so well.
I am so lucky to have my family though. If it wasnt for them I would be paralyzed from pain and living and a cardboard box. I am so grateful for them....
I hope you have the love and support of your family it does make dealing with this disease easier.
I also think cats are great for people who are well enough to take care of them....
(Dog lovers dont be mad I said cats its just because dogs are alot more work and I know I am to tired and just to sick to take care of a dog)
I have been blessed to always have a cat in my life.
I dont know how I would have made it through some days of agonizing pain and blah blah without them.
They are loyal and they love you unconditionally.
They dont care that you are too sick to go out or heck even do the laundry.... they just love you and except you as is.
I hope you have a llmd. You can recover with treatment under the care of a good llmd.
We have a section seeking a dr... if you need a llmd... (make sure to include your email we dont post drs names on the board)
Sorry my post is so long I just wanted you to know that you are not alone and there are others who are going through the same things you are.
Oh and in refernce to the antidepressents making you suicudal I dont know how true it is but I heard that sometimes it has that effect on kids and teens.
Feel free to ask as many questions as you need to. Usually, someone will have the answer, or at least some info on the subject.
As bettyg said, start with Dr B's Guidelines. To make it easier, here's the link - www.ilads.org/burrascano_0905.html Print a copy. It's 33 pages of excellent info!!!
Where are you located in Georgia? What antibiotics (& dose per day) are you taking now? Are you taking lots of high quality Acidophilus to replenish the good bacteria in your system?
Don't mean to sound nosey, but a little more info would help people give opinions & make suggestions.
Again, welcome to the Lymenet Family.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Hi Welcome.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
"WELCOME" Holly, You found a great group of people that understand what you are going through. They are a Blessing to me. "Welcome again", Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
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bettyg
Unregistered
posted
Holly, you mentioned your eyes and someone mentioned being tested for co-infections, so I'll copy/paste some more info here on that for you/others.
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! ==========================================
EYE SENSITIVIES & NOIR, no infrared sunglasses info.
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier.
Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
I ordered the NOIR sunglasses. www.noir.net or .com If you call the 1-800 no. 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.
Thank you again for all your replies! I'm very glad to meet all of you. I'm sorry you're all going through this though.
I'm just going to try and answer everyone's questions in one post. I have a hard time reading too much and understanding what's being said, but I'll try and answer everyone's questions.
Right now I'm taking Doxycycline twice a day. I'm not quite sure of the dose though. My memory's absolutely horrible from the Lyme and my mom takes care of things like medications. It gets so bad I've forgotten my own name and where I live before, so it's a good thing she does.
I'm also having IV Rocephin off and on. I had it last year and the improvement was amazing. I finished school and got a job and was driving myself places and doing things. It was like I'd never had Lyme at all, and I thought it was gone for good.
It came back before Christmas. I had to quit my job and stop driving. I went back on the Rocephin for three weeks and I'm still on doxy, but there hasn't been a huge improvement like before. I keep telling myself I shouldn't be complaining because I'm not always as bad as I was before, but now I know just what it's like to feel healthy, and I want that back again.
I'm supposed to be on IV Rocephin for three weeks every four or five months for a while now, and hopefully that will help again.
I believe I've been tested for co-infections. They seem to have tested for everything possible, but I have a hard time remembering what they've actually done.
Bettyg, I had no idea about the doxy doing that! I've been told it might be the Plaquinel, so I went off that. I've been off it for three weeks, but it seems to be getting worse instead of better, so they're talking about putting me back on it.
Someone told me that yellow colored sunglasses would stop the glares from lights, I tried a pair but it did no good. Then I found out I had the wrong kind. I've got a regular pair of sunglasses now, but they just don't help.
The past few days I can hardly stand any light at all. And sitting in a dark room with sunglasses and a dimmed computer screen is just not practical for very long, there's got to be something better.
I'm checking out these Noir sunglasses now (by the way, the site's www.noir-medical.com). It would be wonderful if these would help more.
I'd like to know more about this Marshall Protocol. I went to the site but I'm having trouble finding out just what it is. Could someone tell me more about this?
Azure wish, pets are definitely great to have. I've never had an indoor cat, but when I first got very sick, my grandmother gave me her dog. She was a gorgeous little Pekingese, and she was older and no work at all. When I was sick she'd stay with me, and it was really great to have her. She died last year though.
Now I have a lab puppy (she's going to be a guide dog eventually), and having a puppy around is way more work than I ever expected. Thankfully my family helps with her, because I couldn't do it alone. I do love having her though.
I'm sorry that was so long! I hope I answered everyone's questions. Thank you again for all your replies, it is so nice to hear from people who are going through the same thing. I hope you're all feeling well today.
Holly
Posts: 19 | From Georgia | Registered: Feb 2006
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posted
Driving can be a real hazard with Lyme. When I was at my worst, I had to map out a new route to work so that all my intersections had stop lights. The glare from headlights was so bad that I couldn't differeniate cars at a regular intersection (all I saw was a giant halo in every direction).
Posts: 133 | From Rocheser, MN, USA | Registered: Dec 2004
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