posted
I am new to this site and I will try to be as brief as possible.
My 16 yr old daughter became very ill last April and was hospitalized with e-coli that infected her kidneys, she was in the hospital for 10 days, 2 weeks later she was back in the hospital for 2 days with Rota virus, after that she never really got better.
In august of last year she was diagnosed with epstein bar virus, in December the dr.s said she should be getting better but she was getting worse. She has all the symptoms of lyme disease.
She has been home schooled since Jan. because she is too weak and sick to attend school.
In june of last year she was given western blot test, but tested negative for lyme disease. Sometime last summer we noticed a bulls eye rash on her arm after coming home from a horse farm. She was at this horse farm alot last year.
Last week she was given another western blot test and tested positive for lyme. Now her dr's think it is either a fasle positive or a recent infection of lyme, probably within the past couple of weeks.
They presscribed Doxycyline 100 mg. twice a day for three weeks, which she just started today. The dr.s think her symptoms now are related to stress. I say they are all crazy, but I am so confused that I don't know what to do next. Can anyone please offer some advice, thanks for listening.
[ 09. May 2007, 09:20 AM: Message edited by: fedup ]
Posts: 11 | From Maryland | Registered: May 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi fedup --
Sorry to hear about your daughter's illness.
Very few doctors understand tick borne diseases like lyme. In my opinion, it is very important for your daughter's health to bring her to one of the 'lyme literate doctors' that the Lyme Disease Association can recommend -- or post a question in the "Looking for Doctor" section.
A bulls-eye rash plus lyme symptoms sound pretty convincing to me that your daughter needs to see an llmd.
I would not believe a doctor that told me she had a "false positive" on her western blot.
Three weeks of doxy is not long enough, and most llmds would prescribe more than 200 mg/day.
Good luck and I hope she gets good care soon.
Posts: 2557 | From home | Registered: Aug 2006
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Cobweb
Unregistered
posted
Hey Fedup-I'm from Maryland,too! and we have some good LLMD's around. If it's not too late-take a picture of the bullseye, and get thee to an LLMD-I was initially prescribed low dose antibiotics by a doc who really knew nothing about lyme.
Two years later I was on disability. So catch this as quick as you can-with a Lyme Literate Medical Doctor.(LLMD)
quote:Originally posted by Vermont_Lymie: I would not believe a doctor that told me she had a "false positive" on her western blot.
Three weeks of doxy is not long enough, and most llmds would prescribe more than 200 mg/day.
I agree!!! Please find a qualified LLMD as soon as possible. I can help you find one.
I hope your daughter gets the care she needs and deserves. Dump the ducks!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
welcome to the board; you found the right place for answers galore.
i'll be sending you a PM, private message, with my 52 pages newbie links, advise, symptoms, western blot info for IGENEX, ssdi disability, etc. .... overwhelming; skim it at first and then read only what applies to your daughter NOW!
did IGENEX do western blot igm/igg OR WHICH LAB? igenex, md labs, and stoneybrooke, nyc are the 3 top LYME diagnostic labs in USA.
please post her POSITIVE/UNDermined numbers for each igm and igg with the numbers going DOWNWARD now across; example
IGG
18 +
31 IND, etc.
IGM same thing as above; we'll help you read the numbers IF IGENEX tested your daughter.
i'll send you a PM with LLMD name for maryland.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Please get your daughter to a Lyme Literate Medical Doctor ASAP!!!
A bulls-eye rash is a definitive diagnosis. of Lyme disease.
The amount of doxy the duck has your daughter on isn't enough to really help.
Go under the newbie links and check out Dr. B's guidelines for treatment of Lyme.
Also, your daughter may have one or more co-infections like babesia or bartonella.
You need to get the right treatment by the right doctor
To get your daughter on the road to recovery.
In my humble opinion, a false positive on the Western Blot equals
A false positive on a pregnancy test....
Highly unlikely.
Good luck and God Bless.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I'm so saddened to hear what has happened to your daughter and the oh-so-typical blame on stress and other "conditions".
Stress is not a cause of disease!!!
Stress is a contributing and aggravating factor which increases blood pressure and compromises your immune system (among other things). These things in turn may cause existing pathogens, such as Bb, to detect a more "favorable" environment and essentially in turn make you sick.
Once this happens, there often is no turning back...and getting rid of all the stress at this point won't help much, though obviously should be attempted nevertheless.
Get your daughter to either an LLMD or even better a lyme friendly naturopath or any lyme friendly holistic doctor.
Another thing that is going to be important in your daughters recovery, and which may not at all be addressed by your typical LLMD, is her diet and rest.
It is important that she stops eating carb rich foods and starts eating more veggies, fruits, nuts, seeds, lots of good pure water throughout the day. Drop all sodas, diet sodas, caffeine drinks, candy, cookies, icecream, bread, pasta, rice. Also try to make her get sufficient quality sleep every night.
I'm not a doctor. The above is IMO. However, if you find any holistic doctor for your daughter, I would be surpriced if he didn't recommend the same and more.
Good luck.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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bettyg
Unregistered
posted
fedup, great job of breaking up your text into paragraphs!
your daughter should take antibiotics for at least 3-4 months to be on he safe side and 400 mg DAILY vs. 200 daily.
you'll have to really pursue this your dr. to get that much!!
lyme spirochetes that get into our bodies cycle EVERY 28 DAYS! SO THAT'S WHY YOU NEED SEVERAL MONTHS TO "CURE" her so she doesn't end up like us!
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posted
If it's still visible, definitely take a photograph of the Bulls eye rash.
Make sure to also get a photograph that shows your daughter's face and rash together, so a physician won't even attempt to say, "how do I know that rash doesn't belong to someone else."
Good Luck!
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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