posted
My 19 year old daughter is going through the process. We saw our Second Doctor today and I would like a little heads up for the second round of test results. Her lifetime GP said her test resuts we the highest that he had ever seen,gave a 10 day round of antibiotics. I asked him "what if this doesn't work" he replied "it never ..."doesn't work" " 2 months later and she is still down.
Posts: 5 | From arkansas | Registered: Jan 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Oh dear!
I'm sure his heart was in the right place, but his data is years out of date and incorrect.
10 days?! Geesh?! Totally inadequate, IMO.
Can you post in Seeking for an LLMD in your state?
Also, what tests did he run?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry to hear that this is so difficult. Most doctors are not at all educated in this field and it's become so political "criminal" for a patient to be ill more than 10 days with lyme that the patients are just tossed to the wind.
It can take months / years to get better but addressing it early is best.
COMBINATION; ROTATION with Rx and support methods with an ILADS lyme literate doctor is best, although many states don't even have one and most insurance companies won't cover.
It's very complex so just hold on. Many have succeeded.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences.
How just doxycycline (or another other antibiotic, alone) can cause chronic lyme:
Topic: replication within cystic forms of lyme -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Dr. Alan MacDonald: Pathologist, Lyme Disease Expert (a top researcher. Although NOT a treating doctor, ALL good LLMDs and LL NDs should know his work)
The Biology of Lyme Disease: An Expert's Perspective - July 2013
This was the result that GP #1 was so excited about. It was like he had just made a touch down and he was very proud of himself for running the test.
Lyme diease Ab, Quant, Igm <0.91
GP# 2 ,yesterdays visit, said <0.91 makes him think it may not have been Lyme at all. He is thinking Epstein-Barr virus.
Posts: 5 | From arkansas | Registered: Jan 2014
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posted
It has been 2 years since she had a tick bite (with no bullseye)
3 years ago she was diagnosed with a severe case of Mono and missed an enitre semester of school. Instead of holding her back,she took her GED and the Superentendant released her from High school. She was very sick that year, but started college at 16. Being able to take some of her classes online,she settled into her new way of life.
This is where I failed as a Mother. She never got well and I just assumed she had become "lazy" and "an introvert" because of the Mono. I basically ignored her complaints and pushed her to be more active.
Over the last six months, she has progressively turned into an elderly person. Icy Hot, patches,heating pads everwhere!
I finally woke up and realized she wasn't just lazy.
We are going to get to the bottom of this,one way or another. I read ,after her first postive Lyme test,that Mono can activate dormate Lyme Disease.
Thanks to all of you for the info! I've got a lot of reading to do.
Posts: 5 | From arkansas | Registered: Jan 2014
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Motiki-i nearly dropped my handheld to applaud you.
I love your attitude. I want to cheer.
I wish more of us had determined advocates like you on our team!
I know when my mom "stepped over" to the lyme side and started reading and learning as much about it as she could, it really helped my morale.
She happily sports a lime green purse, and wears lime green on the days I really need a morale boost.
When she goes on her hikes, she tucks her pants into her socks, and when people ask she does mini tick prevention chats, explains ideal tick habitats and how they grab on.
You have already done so much for your daughter's morale, now that you accept there's more to the aches and pains and fatigue etc.
I speak for all of us with lyme when I say it warms my heart to read of folks who don't have lyme become advocates for their loved ones who do.
It's not an easy road to walk, whether you have lyme, or walk beside someone who has lyme supporting them...but it sure isn't such a lonely one with people like you motiki.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
You will need to do some traveling to find a doctor who will help. There are not any LLMD's in AR that I am aware of.
I was dxd with "mono" at age 17 .. and guess what?? IT WAS LYME.
Do not stop until you get a doctor who will treat her properly.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
You can have multiple infections. I have epstein barr and Lyme (along with 11 other co-infections, not to scare you, it's just a reality and many reactivated when I got Lyme).
posted
Lymetoo, your post is interesting and makes me wonder how often that happens with 'Mono'.
Is 'Mono' diagnosed through symptom correlation subjectively by Dr's (e.g. colds, bronchitis) or is there some specific test that yields a +/-?
Posts: 58 | From Virginia | Registered: Nov 2013
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posted
She did have a positive monospot test 3 years ago. Maybe she needs to get a copy of those test,too. Her liver and spleen we seriouly affected.
There have so many issues during the entire ordeal. She even had a tonsillectomy. Upon researching this connection recently. It brought me to Lymenet :)This seems to be the epicenter for all questions "Lyme"
Posts: 5 | From arkansas | Registered: Jan 2014
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