posted
Hi My daughter diagnosed with Lyme last month. One day she just woke up and could not walk. Pediatric doctor order the test and came back positive.
She was on antibiotic for 28 days. She is all done with it. Also she takes daily multivitamin,vitamin D,C and omega fish oil.
We went to infectious disease doctor today in our local children hospital and all she was saying that "she is now treated and no need for extra tests or antibiotics".
She also told me that don't read or believe all the things that on the Internet and just believe what the cdc and infectious disease web site says.
I asked about co-infections and other stuff and she told me if she has like babesia her CBC results would show and she should have symptoms so there is no way she can have those.
She still have pain on her knee and leg occasionally. Other than she seems okay except all those emotional crisis. (Crying over everything and screaming)
I don't know what to believe or what to do anymore. I don't want my daughter to suffer from this terrible disease.
I already have scheduled appointment with LLMD doctor on 27th in Albany so I am waiting for it. Hopefully I will get some answers when I see the doctor. Thank you for reading...
Posts: 10 | From Syracuse | Registered: Oct 2015
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
If this was an early case, maybe 28 days of treatment fixed it. But the infectious diseases doc is not your friend and will parrot the party line regardless of whatever happens to your daughter now.
Small children do have growing pains and can act up, with no lyme involved. But you are wise to look for a second opinion on this. Good luck to you and your daughter.
Posts: 2888 | From USA | Registered: Mar 2004
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Agree with what Poppy said... it is possible that 28 days took care of it and possible that it did not. But the ID doctor will only tell you one thing, so it's wise to get a second opinion, as you are doing.
Try to keep a log of her symptoms, including the crying and screaming, until then. See if she gets better or worse. Also ask the LLMD about testing for co-infections.
And take comfort from knowing that you are on top of it! It sounds like she is doing a lot better now, so even if she needs further treatment, it sounds like she has a great prognosis.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
You know your daughter better than your doctor.
You know if her knee pain was always there before or not, right?
My daughter received once 3 weeks amoxy, then again 5 weeks amoxy after tick bite and infection, painful knee, painful tummy, changing symptoms.
She was not cured. Far from that. It took us months, let's say, years to get rid of lyme disease.
She got bitten again, and relapsed, but the antibiotic did not solve her lyme disease. Not even borrelia was solved, not to say of all other problems.
Who are you going to believe? Your doctor or yourself?
I saw the clear difference between what my daughter was BEFORE lyme and during lyme. She was not healthy after antibiotics.
I took her to alternative practioners, one a MD, another a naturopath, with decades of experience with lyme disease. She was far from cured, her knee got swollen again many times, despite being 'cured' by conventional medicine.
Trust your gut, not your doctor. It's the life quality of your child that counts. If a child is fussy, in bad mood, funny pains here and there, funny symptoms, I would take her somewhere else to be tested. Not only blood tests, but energetic tests too. That is my opinion.
My daughter caught lyme at the age of 1, then again, many times, until she was 5. I know when she was healthy, lyme free, and when she was sick with something. The difference was clear.
It is not normal for a child NOT to be in good mood. They usually do not know what depression is. Bad mood, in my opinion, means something is wrong. That's just my opinion, of course.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Thank you so much all for you responds. I am not sure when she got bite and what stage is she in now. She probably in late stage but I don't know.
So hopefully she will get better. When she was on antibiotic she was really bad she had stomach problem, mood swings, emotional changes, anger but after she is done with it she is back to normal.
I try not to think and read to much because it affected me a lot I became depressed and make everybody miserable at home too.
So I will do my best my daughter and my family. She will have an appointment on 27th. I am sure after seeing a specialist we all feel much better.
I am sure the LLMD doctor will answer all of our questions and help us to go through this miserable disease. Thank you so much again.
Posts: 10 | From Syracuse | Registered: Oct 2015
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posted
I'm so grateful you are pursuing further treatment and that you have an appointment soon. Hang in there. Doctors are failing us, and and we have to do what we can to keep our loved ones from falling through the cracks.
Once you find the right doctor, she will get well!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- "(Crying over everything and screaming)" -
This could be a sign of Bartonella, often is in a young child. Hope the LLMD appointment goes well regaring lyme and assessment of other possible tick-borne infections that often travel with ticks.
Does your family have a cat? A dog? If so, bartonella is more likely. If so, the pet could be assessed now while you wait for the LLMD appointment.
Or if no pets, has she been around pets / animals; had any pet kisses, scratches?
"(Crying over everything and screaming)"
could also be due to vestibular symptoms if balance, sensory issues are just too much to handle.
and also due to adrenal dysfunction, sheer exhaustion that goes with lyme.
&/or
PAIN that she just can't describe -- many of us with lyme, as adults, have a hard time describing the kind of pain involved -- or the degree of bone exhaustion
Also consider BABESIA as that can cause extreme exhaustion, pain and frustration
It infuriates me that the ID doctor you went to is so inadequate. But, especially that symptoms such as "Crying over everything and screaming" is not seen as a signal that something is very wrong, indeed. This is a medical issue.
Lyme / TBD (tick-borne disease) can overwhelm even the most mature of us. Best of luck with the ILADS LLMD appoint you have soon.
[ 10-16-2015, 04:18 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Interview / Straight Talk with an ILADS educated LL Pediatrician -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- More about things that could be affecting the (Crying over everything and screaming)
Lights -- try to avoid all fluorescent lights (many energy saver bulbs are. Really rough on those with neuro lyme)
Food additives
Gluten can be rough, too
Scented products
Vinyl in the home. If you have a vinyl shower curtain, that can add to the load. One once made me so depressed and irritated my brain.
Any new textiles - as are often sprayed with chemicals.
Music with heavy "beat" or bass rhythm. Fan vibrations, even if several rooms away.
Sounds, themselves. After antibiotics, for many months, ears need noise protection, even around blenders, vacuums, hair dryers, plugs are vital, or decibel rated muffs.
Liver support can help. A good LL ND (naturopathic doctor) would know more and most LLMDs do, too.
Fish Oil important to soothe nervous system that lyme can fray.
If she is okay with touch . . . gentle massage or gentle hugs might be just what she needs. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh . . . just remember a very important matter
PROBIOTICS to help replenish gut bacteria -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Be sure to have her tested for Bartonella and Babesia. My son had bartonella, it showed up on the LabCorp test, and then later on the Igenex testing we had done. I had babesia that only showed up on a specialty lab, it did not show up on LabCorp.
It is generally the rule that people who get bit and end up with lyme also have a co-infection. It is extremely important to treat a co-infection separately, as the abx for lyme will do NOTHING for a co-infection, as it is something separate. Be sure to give your daughter lots and lots of probiotics at least 1 1/2 hours after each dose of abx. Its a lot of pills (you will have to mix in food, spread on peanut butter with a young child) but is necessary. Our LLMD said probiotics in the billions, not millions.
You will get through this, but is very stressful, I know I lived through it 2 times, once with myself and husband and then 10 years later with our son. Read everything you can find, and be sure to get to a reputable LLMD.
Good luck.
Posts: 160 | From somewhere | Registered: May 2010
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We are waiting for our appointment on 27th. My daughter seems doing okay but I don't know.
I will ask for co-infection tests to be done to the LLMD.I don't know what should I ask he.I have lists of things to ask her but if you any suggestions please help me.
I was giving her probiotic to my daughter while she was on abx.
She was off since oct 8th so I stopped giving her probiotic but still giving her multivitamin , vitamin D,C and omega fish oil.
Thank you so much again.
Posts: 10 | From Syracuse | Registered: Oct 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Continue with probiotics. Hope you find the answers / solutions you both seek. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I found this while searching for info on dr j
I wonder how she is doing
Many yrs ago my 4 yo woke up and couldnt walk. Docs then said he has a virus he ll be fine. No treatment
He was in so much pain he screamed when i pulled the sheet he was on to get him to edge of bed to turn head and drink out of straw. I dont know how long it lasted. I dont know how he went to bathroo. It was so ling ago....1977
Lyme was not on my radar. He did get better and had worse learning disibilities thn other kids and more behavior problems becsuse of the way the schools hsndled thst
He was never dx with.lyme(everyone else in family was) until he was late 30 s and couldnt work fromcluster headacges
He asked me for help...llmd did igenex...he was more pos thanall but one of us. Did a few months of doxy and has been working ever since
I never heard of other kuds who woke up and couldnt walk like thst
We were in brockport ny...near rochester ny. Later that yr the dig got parslyzed in back legs. Vet called it some virus with the word paralyze in it...cant remember. We had to put him down.
And today big hoapitals say one doxy is all you need.
If you have questions, many answers can be found there. The Lyme doc will know what to order, so not to worry about having to learn or remember right now.
Keep in touch and lettuce no how she is doing. And you too!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Oh, and the infectious disease doctor is an idiot. She is, like most of them, a danger to society. Pigs. And shame on any of them that do this to children. They are dead wrong and they know it. I am sorry you had to deal with her.
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