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Old 05-06-2013, 06:45 PM
 
Location: Wine Country
5,356 posts, read 6,440,855 times
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My 14 year old step daughter has it. She was diagnosed 4 years ago. It effects her joints and her mood mainly. Right before she was diagnosed with it she pulled out almost all of her hair. She was seeing a therapist because we thought she was having a mental crisis. After she was diagnosed and put on heavy antibiotics the hair pulling stopped. She has seen a lot of different specialists. She has gone through many courses of antibiotics, dietary changes, probiotics, you name it. She goes through long periods with no symptoms at all, then goes through a period of horrible joint pain, irritability, headaches. This will probably be how she lives the rest of her life. Lyme disease is very real.
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Old 05-06-2013, 07:15 PM
 
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My husband contracted lymes last year. We caught it early. One round of antibiotics did the trick. It's sad that many people aren't aware The earlier it's caught, the better the prognosis. That's why awareness is super important. Many people don't realize how important it is to avoid ticks the precautions that help avoid them, nor do they know to do body searches immediately after being outdoors. Many people make excuses or won't change their lifestyle. It just takes a few minutes to do a body search. People who live alone can use mirrors.

Chronic lymes can be almost completely avoidable if people are aware and take it seriously. We had a 20 something living with us for a few months this year. She found 4 ticks on her. She walked around with them for a day before she asked how to remove them. Then she found a few more a day later. That means they were on her for over 48 hours. I insisted she see a doctor. She thought I was crazy, but she reluctantly went and took a specimen with her. The lab results came back positive. If I hadn't forced her to go to the doctor, she would have likely had lymes for a very long time before she was diagnosed. By then, she wouldn't have likely recovered 100%.
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Old 05-06-2013, 07:20 PM
 
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Another thing people don't realize is that large dose steroids can bring dormant lymes back. If you start having lyme's symptoms within few weeks or months after taking steroids, you very well could have lymes even if you hadn't stepped outside for a year. Just google "dormant lymes steroids" if you want to learn more.
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Old 05-07-2013, 05:16 PM
 
Location: NJ/SC
4,286 posts, read 13,393,864 times
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Quote:
Originally Posted by Luckyd609 View Post
My 14 year old step daughter has it. She was diagnosed 4 years ago. It effects her joints and her mood mainly. Right before she was diagnosed with it she pulled out almost all of her hair. She was seeing a therapist because we thought she was having a mental crisis. After she was diagnosed and put on heavy antibiotics the hair pulling stopped. She has seen a lot of different specialists. She has gone through many courses of antibiotics, dietary changes, probiotics, you name it. She goes through long periods with no symptoms at all, then goes through a period of horrible joint pain, irritability, headaches. This will probably be how she lives the rest of her life. Lyme disease is very real.
So sorry to hear that. The long periods with no symptoms are great and always possible with treatment. Thats what I'm hoping for a very long remission. I have a friend that had 15 yrs of remission and then acted up again. After one treatment, she's in remission again. Has she seen a LLMD? Just curious. They are the only one's that seem to know and understand the co-infections and can treat everything, not just Lyme. The dietary changes are what's been hard for me. Sugar free gluten free and dairy free are whats suggested being those little buggers like to feed off sugar and dairy is bad for joint pain. Best of luck.

Quote:
Originally Posted by Hopes View Post
My husband contracted lymes last year. We caught it early. One round of antibiotics did the trick. It's sad that many people aren't aware The earlier it's caught, the better the prognosis. That's why awareness is super important. Many people don't realize how important it is to avoid ticks the precautions that help avoid them, nor do they know to do body searches immediately after being outdoors. Many people make excuses or won't change their lifestyle. It just takes a few minutes to do a body search. People who live alone can use mirrors.

Chronic lymes can be almost completely avoidable if people are aware and take it seriously. We had a 20 something living with us for a few months this year. She found 4 ticks on her. She walked around with them for a day before she asked how to remove them. Then she found a few more a day later. That means they were on her for over 48 hours. I insisted she see a doctor. She thought I was crazy, but she reluctantly went and took a specimen with her. The lab results came back positive. If I hadn't forced her to go to the doctor, she would have likely had lymes for a very long time before she was diagnosed. By then, she wouldn't have likely recovered 100%.
Yes, I know so many people that were bit, treated right away and then fine. Thats why I posted this thread to help spread awareness and let people know not to ignore. I was bit and didn't know what it was even though I had the rash, which some people don't. I ignored it until I woke up one day with half my body numb, couldn't open my hand and extreme pain. Dr's couldn't figure out because a lot of them are not educated and it took me almost 6 months to open my hand and get feeling back. It just spread from there and almost 3 yrs without treatment caused a lot of damage. I wish I didn't ignore it and knew more about it and what to look for. Since then I've had multiple seizures, extreme migraines that have put me in the ER, joint pain, numbness and much more. At one point I couldn't lift my other arm for over a year. I'm so glad to hear you know about this and helped her out. I belong to a Lyme support group and almost every week someone dies from respitory failure, heart attack, stroke or commit suicide because they can't take the pain and poor treatment offered. They were all caused by Lyme not treated fast enough or properly so education is so important.
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Old 05-07-2013, 05:29 PM
 
Location: NJ/SC
4,286 posts, read 13,393,864 times
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Also wanted to mention; There is a rally in NYC for Lyme awareness on May 10th and then one on May 25th in D.C.. Can Google for info.

In addition to Lyme, ticks carry other diseases most people are not aware of. They are called co-infections and can be just as horrible if not worse. One treatment does not fit all because of this. That's why it's important to first use tick repellent, then if bitten to remove tick properly, save it and have the tick also tested. If bit the dr has to understand Lyme and know how to treat it and what tests to do. The dr should be diagnosing based on clinical testing and symptoms combined and treat accordingly. There is a ton of info. on the internet if you Google 3rd stage chronic Lyme or neurological Lyme, Lyme cysts or can go to site I posted in OP. This all can more than often than not be avoided if tick bites are not ignored. Another tip is to go to Google images and search "tick rash" to see a visual of what to look for. Also look at pics of Rocky Mountain Spotted Fever. That is one co-infection I have and also ignored the signs because I didn't know.
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Old 05-19-2013, 09:45 PM
 
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My 20 year old daughter was recently diagnosed with Lyme. She has severe psychiatric symptoms. She tested negative for it for several years before she finally tested positive and started treatment. All the Lyme tests that are available right now are not reliable. Doctors need to be much more willing to treat based on health history and anecdotal evidence. It's horrifying how many people could have avoided chronic Lyme if Doctors had just believed them.
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Old 05-20-2013, 12:38 AM
 
43,012 posts, read 92,280,949 times
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Quote:
Originally Posted by egyud View Post
She tested negative for it for several years before she finally tested positive and started treatment. All the Lyme tests that are available right now are not reliable. Doctors need to be much more willing to treat based on health history and anecdotal evidence. It's horrifying how many people could have avoided chronic Lyme if Doctors had just believed them.
That's a shame. The norm is to treat for Lymes immediately based on symptoms. My husband wasn't tested for Lymes at all. They just treated him for it. Veterinarians do it the other way (only treating if a test is positive), and it makes me angry because I highly suspect my dog has Lymes. I imagine your anger is a million times greater since she's your daughter and not a pet.
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Old 05-20-2013, 07:58 AM
 
Location: NJ/SC
4,286 posts, read 13,393,864 times
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I have been tested over ten times, all postive along with three co-infections, I had the typical rash and no depression or any psychiatric issues and still took three yrs for a dr to listen to me. This is a cdc, government, education, political issue going on that causes people to not get treated properly. I have been tested for all the other illnesses that are very similiar to Lyme; Lupus, MS....etc. I eventually became depressed but it was after spending thousands of dollars, seeing terrible dr's, tests after test and my body failing me more and more. I wasn't depressed and then got sick, it was the other way around but believe it or not, or unless you go through it your self, a lot of dr's don't want to hear it or help. Now that I have so many things wrong with me and switch dr's so many times, chasing symptoms to get under control...If I even mention Lyme, the mouth drops and they say oh no, thats bad, we probably can't fix your "symptom" because Lyme causes it all. Yeah, no kidding. I have to travel to NJ from SC as most do in the south to see a dr that has a clue. I've been on my 6th treatment but finially first IV med and after three wks already feel a little better and can get out of bed and walk around the house.
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Old 05-20-2013, 08:01 AM
 
Location: NJ/SC
4,286 posts, read 13,393,864 times
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Speaking of pets...last time I took my dog to the vet he learned I had Lyme, probably because I could barely walk and we got in a discussion. He was asking me a million questions, trying to learn more so he can learn to treat pets better. He cared more than some of the dr's I have been to and wanted to educate himself.
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Old 05-20-2013, 10:22 AM
 
43,012 posts, read 92,280,949 times
Reputation: 30387
All I know is I took my husband to the ER when I found the tick head in his arm with the typical bull's-eye rash around it. They surgically removed the tick pieces and the dead skin and treated him with antibiotics without testing him.

I think the difference is we live in a state where Lymes is prevalent. Doctors are more aware where I live. In your state, they don't see Lymes as often. It's just not on their radar.

I'm glad to hear you're starting to feel better. It's such a shame they didn't catch it sooner because early treatment is so easy and effective.
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