posted
I just got a call from one of my daughter's doctors tonight telling me that she has tested positive for three of the tests that they ran on LD. I am so confused. We have been dealing with her having pain and weakness in her legs for more then 2 years now and she has had to undergo more tests than ever. She has seen so many specialists in the past 2+ years and finally - after urging an on-call ER doc to Please re-run a LD test (I had heard thru a friend that sometimes the first on won't show up positive)because her symptoms matched a friend of a friends symptoms who had had LD for more than 20 years. She is perscribing a 3-week course of amoxicilin - and in reading some of your posts - I am not sure that that will be enough - My daughter is 17 and has had these symptoms for a long time - I am just afraid that 3 weeks of meds is not going to cut it. Also - Can more then one person in the fmaily be infected. With all of her medical problems - I have put my own on the back burner until now....I have gone thru the symptom check list and boy, I can say that at 36 I should not be feeling like my grandma when her arthritis was at it's worst. Can you request to have a LD test done or is that unheard of.
Thanks to anyone that could give me some direction!
-------------------- Those who say it can't be done, should get out of the way of those who are doing it! Posts: 34 | From South Dakota | Registered: Sep 2007
| IP: Logged |
Welcome! Establishing a diagnosis is the start of the journey to recovery. I am really sorry to hear that your daughter is afflicted with this horrid illness.
It must be a relief to have an explanation to your daughter's symptoms. If she has been ill for two years, then a 3 week course of antibiotics isn't going to be sufficient. Several years may be necessary.
Lyme disease is a really complex illness that most doctors do not understand. Diagnosis and treatment is very controversial. It is therefore vital that you find a lyme literate doctor - or LLMD. Post a message on the seeking doctor message board on this website to find one.
It is very common for more than one member of a family to be infected - after all they are exposed to similar risks (ie ticks). I think you also need to see a LLMD who can take a proper medical history and arrange for your bloods to be done at a trusted lab.
You and your daughter will have to learn a huge amount about this disease - patients have to be proactive in their care because otherwise they just don't get any. But you are starting in the right place.
One final warning for your daughter - people with lyme often get initially worse on antibiotics - it's called a herxheimer reaction (or herx). Caused by release of toxins as the bacteria die off.
Good luck to both of you Chiz
Posts: 67 | From UK | Registered: Oct 2006
| IP: Logged |
posted
Thank you so much - There are so many terms and meds and symptoms and......things to learn that I am overwhelmed. I will seek out a doc then as you suggested - and as I read all of the posts today....I do believe we are in for a long journey.
Thanks again and now I know where to turn with all of my late night questions.
Pam S
-------------------- Those who say it can't be done, should get out of the way of those who are doing it! Posts: 34 | From South Dakota | Registered: Sep 2007
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Please, please find a LLMD to treat your daughter. (Lyme Literate Medical Doctor)
That is her best chance of getting better.
Three weeks of amoxi just won't do it, I'm afraid.
Sending you positive thoughts for you and your daughter.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Welcome, and ditto what they all said!!
Your daughter could also be suffering from a co-infection, such as babesia or bartonella. Those are quite common, though regular docs (we call them "ducks") are rarely aware of this.
The great news is that younger people tend to get better much quicker than us "old" people!! So please don't despair, there's lots of hope for a good outcome.
Please get yourself taken care of as well.
A good LLMD will test you through IGeneX, the best lab for tickborne disease testing. It will give a better picture of possible coinfections as well as lyme, for you AND her.
Do keep us posted.
Expect the regular doc to give you great grief and even scorn for seeking a specialist. Read up on the controversy so you won't be shocked or discouraged when/if you hear it from him. But don't let that stop you.
Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Pam WELCOME!*)*!)!
It is VERY VERY common to have more than one family member with Lyme because of TWO reasons
1. geography- families tend to hang out in same spots with shared/ similar risk factors
2. certain genetic tissue types are susceptible to Lyme infection and those tissue types obviously run in families- my older daughter got sick like me for instance- and she has been well for 6+ years now- in full remission
3 weeks??? No way. You need an LLMD. Or someone who will treat like one. Listen to MIchelle M re coinfections- important!!!
I had, for example, HME, HUman MOnocytic Ehrllichiosis, which caused high fevers and Irritable BOwel SYndrome in me. It went away with Doxycycline easily and quickly. 30 days of DOxy and my irritable bowel syndrome and high fevers were GONE not to return.
But I also had Babesiosis, with it's own set of symptoms, fatigue, brain fog, TMJ and arthritis in my hands, which took 2 years of Mepron and the last year also Artemisia.
AND I had Lyme itself, progressive weakness leading with my left side, hearing loss, vision impariment, Adie pupil, blurring of vision, massive floaters, massive facial swelling, chorea movement disorder in my left hand, incontinence, 101 fever for 4 years, arthritis, arthalgia, bodywide rash, slurring, choking,constant tinnitus for over 2 years, interstitial cystitis, chornic nausea, MCS, RLS, CFS, fibromyalgia, incipient demetnia/ encephalopathy, vomiting fits, seizures, body jolts, chorea major, and neurological problems like loss of balance which made it impossible to walk wihtout leaning on things- which took 9 months of IV Rocephin and requires "maintenance" orals to keep me from declining but gives me a 99.9% normal life with NO pain or symptoms!!!!!!
My daughter needed 9 months of Mepron for her Babesiosis and 3 years total abx to get her into remission with Lyme.
ALMOST ALL younguns go into full remission.
ANd YES get yourself dealt with- at 31 I had TERRIBLE TERRIBLE arthritis!!!!!!!!!!!!!!!!
Now years LATER I have NONE*)*!)!!
Take care & welcome!*)!*)!! Sincerely,
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| 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!
![[Big Grin]](biggrin.gif)
So please don't despair, there's lots of hope for a good outcome. 
Printer-friendly view of this topic