posted
Hello! I�m not brand new to this disease but I had no idea what a nightmare my life would become in a very short period of time. My father-in-law has chronic Lyme disease and has for the last five years. He sees a specialist because he spent years seeing different doctors telling him they could find nothing wrong with him.
Now I have an 8-year-old daughter who started telling me her hands and feet were numb and she was banging them on things to �wake them up.� She is dizzy, has headaches, a stiff neck, low grade fevers, stomach pain, nausea, trouble sleeping, general achiness, chest pains, and complete emotional breakdowns over nothing. The symptoms come and go except the numbness, stomach pain, trouble sleeping, the general achiness, and emotional breakdowns. She woke up at 3:00 a.m. after July 4th scared because her legs were so numb that she was afraid she was going to fall down on the way to the restroom. I was really scared. I couldn�t go back to sleep and got on the internet. After I put in these symptoms and Lyme disease came up, I remembered she had a tick pulled off her head at school in late April.
Her doctor�s office didn�t want to run the tick screening tests the next day but I insisted. The clinic called several days later and stated she had Lyme disease. She had 39 and 41 KD (IGG) bands and 23 KD (IGM) band come back reactive. The clinic prescribed Amoxicillin, 800 mg/day, for one month. The pharmacist, who is an acquaintance, stated this is not the preferred treatment and to request Doxycycline. The clinic wouldn�t initially agree and stated they would get back to me. After several days, the clinic called and stated my daughter does NOT have Lyme disease, she has �strep��go ahead and take the Amoxicillin. What?????
I have now called the Lyme specialist and cannot get an appointment until November. I have also called my primary care physician who has agreed to see her tomorrow to see if he will prescribe her the proper antibiotics based upon the tests she had run and/or to see if my doctor will run the IGeneX tests. I don�t know what else to do.
Sorry for the long book. My daughter is 8-years-old and asks me why she feels tired all of the time. She can�t eat a normal meal. How much worse will things be four months later when she finally has an appointment with the specialist?
If my primary care doctor won't do anything, should I give her the Amoxicillan so she is getting some type of treatment?
Even though my FIL has the disease, he is really private and I had no idea the true horror this disease can cause. Everyone here is in my T&P's.
Worried sick� Stephanie
Posts: 4 | From Southwestern MO | Registered: Jul 2011
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I think it discusses children too and seems like I remember that children under a certain age are not given doxy because it stains their teeth. But you can double check this.
The reason doxy is usually the first line of treatment is because ticks transmit more than one germ frequently and doxy hits at least two of them.
Good luck. Keep trying to find someone to treat her longer. November is too long to wait.
The thing about getting tested immediately after a tickbite is that the antibodies that are measured in a test do not develop for a couple of weeks. So, if your daughter was already showing evidence of infection so soon after the bite, then she probably already had it from a previous bite. Some people think that a second or third bite introduces more spirochetes that the immune system cannot fight off.
Posts: 8430 | From Not available | Registered: Oct 2000
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
This is a good example of why a lyme specialist is needed. Good job by you in doing some homework and looking into lyme. Keep at it and be sure to follow up with a lyme literate MD when you can.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
My 8 yr old was on amoxycillan, it helped a lot. Did not have the same problems as yours but I feel your pain.
You might also want to see a pediatric neurologist. While this specialist probably won't want to discuss lyme and/or chronic lyme, they can test for strep titers and possibly mycoplasma. That is what my daughters tested for. Both were high. Any and everything you can bring to your November visit is crucial. Not everything is lyme though so keep an open mind.
From what I've heard, strep and lyme go together. I think the kids are harboring one of these infections, another comes along, and whammo. Full blown chronic infection.
You are probably in for the long haul. My advice would be to get your daughter tested for Vitamin D too. Find a probiotic she can chew and feed her activia yogurt. There are chewable vitamin D's out there. She is probably deficient or low.
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
My daughter has high strep titers, some positive bands on the Western blot (we're waiting for latest IGENIX testing), and I am being treated for lyme. With regards to the strep titers, she is positive for PANDAS.
All of that is to say that in our case, yes, strep and lyme do go together. Our LLMD says that the antibiotics that treat lyme will treat the PANDAS/strep (and mycoplasma).
My daughter has some serious psych issues due to this all. She's currently on Ceftin and Zithromax. And diflucan due to constant yeast issues.
posted
Thanks for the reference to the treatment guide. I printed off portions of it to take to her appointment tomorrow.
Thanks also for the advice and suggestions.
Apljack, when you refer to strep, is that an ASO (Anti-Streptolysin O) test? If so, she was tested for that and her results were high. 486 (normal is <150).
Will get probiotics. That's a good idea. Might help with stomach pain and eating. Will check into Vit D.
Posts: 4 | From Southwestern MO | Registered: Jul 2011
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I can't imagine being sick with Lyme and having to take care of someone with Lyme!
A few days back my daughter was having chest pains and trouble breathing and the numb extremities and we were instructed to go to the ER of a children's hospital. While there, we showed them the test results we had and the doctor informed us there had not been a case of Lyme disease in MO in 20 years! He ordered blood tests for strep, Lupus and Epstein-Barr virus. He says it will be 2 weeks before the results are back but he is certain she has one of those. Who knows? This minimum band thing is very frustating.
Posts: 4 | From Southwestern MO | Registered: Jul 2011
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posted
They probably RETRACTED the Lyme DX....because it doesn't meet the CDC criteria of having 5 Positive bands....but none the less, her symptoms SCREAM Lyme.
Doxy would be the best choice to cover Lyme and Co-infections. However, being 8 it depends on her tooth development as doxy can cause damage to the enamel.
I believe amoxicillin is a Great drug for Lyme but doesn't cover the Co-infections
Either Amoxicillian or Doxy would cover till you get in to see llmd.
Posts: 501 | From Hudson Ticky Valley, NY | Registered: Aug 2009
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posted
The statement about no lyme in MO in the last twenty years is false. The CDC keeps a count of these, along with other diseases, and although the undercount makes surveillance a joke for tickborne diseases.....still lyme and other tickborne diseases like anaplasma and erlichia have been reported in your state.
Basically, they have made the surveillance criteria for lyme so strict, that it misses most cases, and doctors who report more than a few cases will be putting a target on their backs.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I'm so sorry about your experience. I would keep calling the llmd to see if there are any cancelations. I have heard about a new bite setting off an old bite . Lyme is everywhere. It just doesn't stop at the border. Praying for you and your family. I wonder if her breathing thing was babesia. Thinking of you!
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Grace's Mom:
These symptoms are similar to what our Grace daughter started experiencing when she was 9. She has Lyme and Babesia.
She went 8+ months b/4 a proper diagnosis and treatment.
Even after treatment started things did become worse.
THANK YOU for the links. I couldn't figure out why the doctors were so hesitant to diagnose our daughter and now I completely understand.
We have an appointment with your Lyme doctor in November--the earliest appointment we could get. There are 40-80 people on the cancelation list so I'm not optimistic we'll get in earlier.
From watching the videos, I'm going to approach my family doctor in a specific manner to see if he'll help and I'm going to see if that works.
Stephanie
Posts: 4 | From Southwestern MO | Registered: Jul 2011
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