But I'm unclear about the Babesia FISH ( positive for both ) and one of my son's titers for Ehrlichia.
I'm too tired and drained to decipher myself right now.
Just want to cuddle with my kids - who are having another restless night, of course.
This disease(s) has nearly killed me - not my little babies too !
The treatment thus far, is no cake walk either... How do children get treated?
This PICC line has turned out to be my life line and only barely into month 2!
But putting one in my 4 year old ! Oh, I just can't handle those thoughts tonight!
Have an appointment with the ``BEST'' (in New Haven) but not until February. Shouldn't they be on something until then?
Need to research and prepare for appointment w/ ped duck on Monday. What should I ask him to prescribe?
Do kids take Mepron? How can their little bodies handle all the meds ?
Saw a different Ped in the practice today - prior to the Igenex results arrival - (no longer willing to dismiss these subtle and strange symptoms while we waited for them - starting a paper trail too.)
She ordered some blood work: liver, allergies, etc. but I would like to make the most out of the blood draw so...
I need suggestions as to which tests (done here with either LabCorp or Quest and paid by their insurance,) I could ask for the Ped duck to do in the meantime...
Like this CD-57 ? Still can't find that one on LabCorp's test menu to print out for him, if anyone could give me the link or code for that ?
Perhaps another WB - via local lab after a few weeks of ABX ? Co-infections, Mycoplasma, etc.?
Also need advice on how to get ducks to write letters to insurance company so that they will reimburse us for the expensive LLMD visits/treatments to follow ? Anyone with luck in that arena?
Not that I'll get the ducks to cooperate with any of this but I'll sure as heck try ! And now that they have serially dismissed all our concerns for so long I may have a little leverage now.
Oh so many questions - my head is reeling.
I feel so, so, so... argh! Forget it, many of you may know exactly how I feel, huh?
But I knew I would find comfort here.
Thank You All and Goodnight, Sam
Posts: 68 | From Pittsburgh | Registered: Aug 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hi Sam.
I know how you feel. Really I do.
Remember sitting by the fax machine waiting for LLMD to send over
Both of my babie's Western Blots.
I kept saying "Please Lord Jesus, Please."
When the results came over, I cried.
Then I realized that I had better get over my pain and fear,
So that I could get into the business of getting them well.
My children have done zithromax and now amoxil.
In the last year, they have both learned to swallow pills. Thank God!
Children have a really good chance of beating this thing.
Their herxes (my kids anyway) involved a lot of behavioral issues.
It wasn't fun watching my 5 year old have an emotional break down.
Screaming, yelling, hitting.
I had to be really careful to not let that ignite my own Lyme rage.
I know my second child has congenital Lyme.
Probably the first too.
However, if I had known......
I didn't.
You didn't.
All you can do at this time is see about getting them well.
Don't beat yourself up over something you didn't know about.
It is really hard to watch their diet (sugar) and get them
To take the "yucky" medicine.
I know that there is a pediatric dose of malarone (have to swallow pills).
I am sure mepron can be adjusted down too.
I think my children are headed in the right direction though.
No more joint pain, night sweats, fatigue, etc.
Sending you positive thoughts and prayers.
Sometimes just knowing is half the battle.
PM me if you need too.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Ugh... I'm so sorry to hear this, sam!!! I know your heart must be broken!!
I think as Geneal indicated, most children are treated with oral meds.
Post results when you get the energy!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I'm so sorry that you and your kids have to deal with this.
As Geneal and tutu said, children do very well on treatment.
On the up side of all this is that you know now and can deal with it while your kids are young. I've read that is when they have the best chance of recovery.
I didn't know when my daughter was young that I had lyme. She's had symptoms off and on since she was very young. I don't know if she has it or not but at 30, she won't take the tests and I can't make her.
You are in a position to exert your parental judgement and get your kids treated. I think that's great.
Wishing you and your family the best, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Unlike you and geneal, I didn't know from experience what lyme was like, so when we got the first test results, it was a relief to know what was wrong with our child.
Treatment is not easy, and it takes a long time. Our son also had behavioral herxes, but over time it got better.
Our son was 5 (he's 6 now)when he was diagnosed, and we suspect that he contracted lyme at age 4.
Currently, he is being treated for babs with mepron, so it can indeed be used on the little ones.
In regards to IV, it was mentioned many times over the course of our son's treatment, but has not been done yet.
His only symptoms at this time are night sweats and temporal lobe seizure activity (which may or may not be caused by lyme).
I wish you the best dealing with this. It will be tough, but you will get through it.
Take care, kp
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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My 3yo son was infected in May. He went from normal and healthy to laying in the floor with his blanket all day moaning about pain in his ankles, knees, hips, elbows, neck, back, shoulders and wrists, running a low grade fever, becoming emotional, and seeing "spots".
Thankfully, he is doing much better, and still working his way through treatment with two very strong abx. We are testing next week through Igenex for co-infections because they continue to come back negative but I still think he's not 100%.
Prayers your babies respond well to the treatment and you can get something started very soon.
-------------------- Mom of Five - two had lyme and coinfections - one had RMSF - Still hoping for broader awareness of tick junk in general medical practitioners. Posts: 79 | From Virginia | Registered: Jun 2008
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