trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Saw Cantgiveup's post and thought I should post this too.
My right ovary was removed because it had huge endometriomas (blood filled cysts) in it again and again.
I had a PCR biopsy done with MDL---it was negative.
I am still waiting to win the PCR lottery some day. I think if I EVER have a positive PCR I will be just as excited as winning the lottery! I believe the odds may be similar. Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
bettyg
Unregistered
posted
trails, HAPPY to learn your biopsy was negative! Time to celebrate! Thanks for posting.
IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
My wife had a golfball size one on her overy a few years ago the Dr did a lapsome kindascope threw the bellybutton {the night before while she slept I said a prayer for her that God would remove it} anyhow after the surgury in which the Dr could not find the cyst any where no sign of it no rupture just nice overies He was ****t came out of surgury and yelled at the tech for saying there was a cyst in which the tech showed him the pictures and it was there.
I thanked God for removal of it. pretty neat huh
She also had a tubal pregnancy which he flushed with some sort of dye so basicaly 2 surguries one completed one not.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I know how you feel ... I sent both my tonsils and gallbladder to MDL and got a negative lyme report. It was disappointing, odd as that sounds!
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
| IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
im not alone! I know how ya feel trails...frustrating.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
VERY strange tree! A miracle for sure and sounds like you two need all that you can get!
Betty--I'll be happy when the OTHER pathology reports come back clean---cancer and such---but to get a negative lyme test AGAIN isnt a happy moment.
I do test positive for lyme in my serum, but only antibodies, (WB both IgG and IgM CDC positive for many years without much change even during long term IV treatment) not PCR. Until I know that the dang DNA is IN there, I will forever doubt that I have ongoing infection and not just cytokine over reaction and other hormonal, systemic orveraction to the initial long term infection.
I believe in on going infection, but I am a skeptic by nature. I want proof in my pudding! Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
posted
Hi - I'm new to this site, but this thread struck a nerve for me, so I thought I'd pose a question here.
My daughter was diagnosed with Lyme Disease when she was 14 after waking up with Bell's Palsy symptoms. She was treated and we thought that she was cured. But when she was 15 she lost an ovary to a Hemmoragic (spelled wrong, I'm sure) cyst the size of a grapefruit. She was in her high school marching band and had frequent problems with knee joint pain and to this day has knee joint problems. She just turned 21 a month ago and was hospitalized over Memorial Day weekend with a slightly elevated white blood cell count, pain in her abdomen and a fever. They thought she had appendicitis, but her CT scan and sonogram showed no apparent cause for her pain. They treated her with antibiotics in the hospital for 4 days and she had another 4 day supply of antibiotics for when she got home. The intense pain has subsided, but when she's visited her GP and Gynocologist, she had pain when they were examining her.
I never thought about Lyme disease until I heard an interview on the radio with someone who claims to have had pain and health related problems for years due to Lyme Disease. Could her health issues be related to having had Lyme Disease? Are there long term health issues? Any advice or information would be appreciated.
Thanks - LymeGalsMom
Posts: 2 | From Florida | Registered: Jun 2006
| IP: Logged |
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Oh boy Lymegalsmom! Yes indeed there are quite a LOT of long term health issues. I am very very very sorry to be the bearer of that bad news.
I first had lyme in 1991--I was 18 years old and had the rash and the tick attached and everything. I had pretty speedy treatment but only for two weeks of antibiotics.
In 2001 I hit a WALL of crazy symptoms that I spent a year tracking and trailing. I was treated with more antibiotics and did well again for 3 years. During those three years though I had A LOT I mean A LOT of "other" health issues.
Turned out to be endometriosis and adhesions in my pelvis. Personally I think the Lyme caused the endo and there is some research to this effect. I also have NO family history of the disease and had NO symptoms of it until after I was almost 30.
Adhesions and endo can NOT be seen on any CT or MRI scan. They can only be seen in surgery---but the pain they cause can be excruciating and devestating.
It is QUITE possible your daughter ruptured another hemoraggic cyst which would mean she had blood and other irritants in her pelvic space reallly causing havoc with her peritoneam. OMG that pain was THE WORST. Many women think it is much worse than labor. I ruptured 6 cysts one each month for 6 months in a row!!!
If it was a ruptured cyst, the only thing they MIGHT find on any scan is some free floating fluid. USually in the space called the cul-de-sac---behind the uterus.
But the fluid isnt always picked up on scans and can be reabsorbed quickly.
ANyhow===feel free to private message me.
Start researching endometriosis--- there is MUCH to learn.
Good luck to you and your daughter!
Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
bettyg
Unregistered
posted
lymemomsgal, Hi, I was going to send you a PM, private message but you do NOT have it enabled. Read below to mark it yes vs. no ok! Here are some newbie links for you too.
Welcome to this 24/7 LYME support group board!
Before I forget about it, all PM, private messages go to YOUR HOME email address.. If you want to keep info, file it in your HOME FILE FOLDERS. Lymenet PM allows 60 notes only & they add up fast; so delete them promptly from lymenet folder.
Make sure on ``MY PROFILE'' you edit it to show you ALLOW PMs so folks can send you a private email vs. On public board. Also change the viewing notes to VIEW ALL NOTES vs. 30-60 days only. Very helpful when you do searches on specific topics.
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. Burrascono'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 1-10 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.
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
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! http://tinyurl.com/
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.
RASH ITCHES -- use ``rubbing alcohol`` on it especially the corners good. Hubby suggested; worked great for me; rash cleared up in 2 days vs. weeks/month
1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed - 14 Answers ranged from 1- 120 different doctors
2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses? Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7
4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25
IP: Logged |
bettyg
Unregistered
posted
Welcome to the board,
Breaking this up on the longer paragraphs for easier reading for us neuro lymies by hitting enter often and double spacing. Please do this in the future...thank you!
quote:Originally posted by LymeGalsMom:
Hi - I'm new to this site, but this thread struck a nerve for me, so I thought I'd pose a question here.
My daughter was diagnosed with Lyme Disease when she was 14 after waking up with Bell's Palsy symptoms. She was treated and we thought that she was cured.
But when she was 15, she lost an ovary to a Hemmoragic (spelled wrong, I'm sure) cyst the size of a grapefruit .
She was in her high school marching band and had frequent problems with knee joint pain and to this day has knee joint problems.
She just turned 21 a month ago and was hospitalized over Memorial Day weekend with a slightly elevated white blood cell count, pain in her abdomen and a fever.
They thought she had appendicitis, but her CT scan and sonogram showed no apparent cause for her pain.
They treated her with antibiotics in the hospital for 4 days and she had another 4 day supply of antibiotics for when she got home.
The intense pain has subsided, but when she's visited her GP and Gynocologist, she had pain when they were examining her.
I never thought about Lyme disease until I heard an interview on the radio with someone who claims to have had pain and health related problems for years due to Lyme Disease.
Could her health issues be related to having had Lyme Disease?
Are there long term health issues? Any advice or information would be appreciated. Thanks - LymeGalsMom
Wow, she has been thru so much for being so young. Glad Trails is able to answer questions for you.
IP: Logged |
posted
Thank you all for your replies. Guess I have a lot of reading to do to get up to date on what I don't know about Lyme Disease and it's long term health effects.
I've enabled the private messaging.
Thanks again and I'm glad I found out about this website! :-)
Posts: 2 | From Florida | Registered: Jun 2006
| 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!
![[Wink]](wink.gif)
![[Big Grin]](biggrin.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic