posted
Needing a little advice from parents who are treating their kiddos for Lyme!
I have been treating myself since March of this year. No tick bite, no rash so I have no idea when I was infected.
I have 3 children 8, 6, and 3 yrs old. I started "seeing" Lyme in them. Most would have disregarded the symptoms as growing pains, ADHD... Could I have had this when pregnant and passed it on to my kids?
I talked to my LLMD and she agreed that their sypmtoms were enough to run labs.
Their labs were just faxed to me (by Quest) and my head is spinning. Drs. out of the office for a couple days so I thought I'd see if anyone here might be able to offer their experience or advice.
My 3 and 6 year old both had reactive band 41 IGM, which coupled with their sypmtoms is enough for me to push the Lyme diagnosis.
All of them had several really high CD 57 markers. And their hormone levels are screwy.
All of them had low WBC and low neutrophils and lymphocytes.
Viral panel was negative for all.
Basically, it showed that something is going on but each test is non-specific to diagnose anything specific.
The low white blood count is what's freaking me out the most but I'm trying to remind myself that Lyme can mess that up too.
They all have bone pain (effects their ability to play with other kids sometimes), fatigue, muscle weakness (6 year old couldn't raise his hand in class somedays), concentration problems, horrible night sweats/nightmares.
Can anyone help ease my mind? I'm not so much worried about treating Lyme, just thinking of all the other horrible things that the bloodwork could lead to. Why do moms have to worry so much?
-------------------- No tick bite/rash sick Nov '09 diagnosed Mar '11 Doxy/Zithro LOTS of supplements
Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED! Posts: 127 | From Illinois | Registered: Sep 2010
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posted
ktdommer I know is treating her children and is a wonderful person and resource. I think you would be safe in sending her a PM.
Sorry I couldn't be of more help. I don't know too much about treatment of children.
I do wish the testing would have been from anyone other than Quest. I think band 41 is flagella, but not sure specific to Lyme? (probably with those symptoms)
When do you think you got Lyme? Did you breastfeed? Could there be a chance you have had it for years?
Prayers for you and your family Fuel
-------------------- IgM- 31,34,39,83-93 IND IgM- 41+
IgG- 31,34,39,83-93 IND IgG- 41++ Posts: 610 | From Lymeville | Registered: Nov 2010
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posted
Just started going through the exact same thing. I'm a few months into my treatment and Dr. R gave my 3 year old the urine test through Igenex. It turns out I passed it while I was pregnant. My kiddo isn't showing a ton of bad symptoms but some are close to what your kids are going through. Dr. R said he wants us to see Dr. J in CT who is finally taking new patients again! There are also pediatricians who studied under Dr. J that are hopefully a little closer to you. I think that's the best place to start. Let me know if I can help in any way.
-------------------- "If you are going through hell, keep going.
Lyme, Ehrlichia, Bartonella, and Babesia - great! MTHFR, 10mm pineal cyst, ana 1:80, CD57 = 36 Posts: 56 | From New York | Registered: Jun 2011
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I have absolutely no idea when I was infected with Lyme.
I breastfed all 3 of my kids until they were 9mos-1 year old so if they do all have Lyme, I would assume I had it before I got pregnant with my first little guy.
Not something I'd ever be able to prove though.
Any additional thoughts would be appreciated!!
-------------------- No tick bite/rash sick Nov '09 diagnosed Mar '11 Doxy/Zithro LOTS of supplements
Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED! Posts: 127 | From Illinois | Registered: Sep 2010
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-------------------- No tick bite/rash sick Nov '09 diagnosed Mar '11 Doxy/Zithro LOTS of supplements
Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED! Posts: 127 | From Illinois | Registered: Sep 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
All three of my children have Lyme and co as well. Two of them and myself have consistantly have low WBC, neutrophils and lymphocytes.
My oldest could have gotten it from a tick, but my two youngest didn't.
What you describe...bone pain, ADHD, fatigue and weakness...my kids to a T.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
I am so sorry that you are just going down this path with your children.
I'm a little different than you in that I didn't know I had Lyme until my youngest became bedbound and after 19 docs we had him tested through IgeneX. It was a few weeks later that I discovered I didn't have lupus but Lyme. Then my oldest healthiest child was tested and is positive for Lyme and coinfections, too. I unknowingly gave my children Lyme in utero. It is possible you did too. I nursed, also for many months.
Our Lyme story didn't end there as my sister was looking more like MS every year. She tested positive in October, which then meant her 5 year old needed testing. He at age 5 is positive for Lyme disease and is showing symptoms and labwork of chronic infections. His appointment is upcoming in a week.
My ILADS doctor is treating my teenagers with Burroscano's adult protocol. This won't be the same for your young ones I dont' think. My 16 year old is 10 months on IV antibiotics and just started mepron on top of everything else last night.
We do not have any blood issues amazingly. We do have testosterone, adrenal and vitamin issues along with bartonella, babesia, HHV-6 and mycoplasm pneuomonia.
I know your head is spinning and I do not blame you. It is good to get information from others, but I think a talk with your LLMD will give you the most answers.
There is a lady in Illinois with Lyme and has two kids in treatment at ages 3 and 5 I think. We share the same doctor with Fuel. Our ILADS doctor has trained with Dr. J. and is seeing more and more pediatric patients.
If you send me a PM, I will connect you with her. Our doctor sees an Iowa family with 2 newly diagnosed kids but they are older. I can connect you with her also.
As for your school age kids, do they have 504's or IEP's? I imagine they will need some help in school until symptoms resolve. Once they have a diagnosis this will be easier to write modifications and or accomodations.
Where were the CD-57's done? Labcorp? How high is high?
I'm sure others will be along soon to advise and support.
Take care!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
I thought the CD-57 wasn't reliable for young children? In addition, I thought a low CD-57 was consistent with chronic infection.
My 4 year old's CD-57 result was 7. He also has positive bands 41, 39 IGG, and positive band 23 IGM, low WBCs and symptoms. He has diarrhea, fatigue, bad "growing pains", screams at night, very skinny. Need to get him back on treatment. We did treat for about 5 months.
Really worried about my son too,but my Lyme Dr. says children tend to bounce back much more quickly.
Posts: 618 | From NC | Registered: Oct 2009
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posted
I thought the CD-57 wasn't reliable for young children? In addition, I thought a low CD-57 was consistent with chronic infection.
My 4 year old's CD-57 result was 7. He also has positive bands 41, 39 IGG, and positive band 23 IGM, low WBCs and symptoms. He has diarrhea, fatigue, bad "growing pains", screams at night, very skinny. Need to get him back on treatment. We did treat for about 5 months.
Really worried about my son too,but my Lyme Dr. says children tend to bounce back much more quickly.
Posts: 618 | From NC | Registered: Oct 2009
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
jwall- was your son symptom free for 2-3 months before discontinuing treatment?
They may bounce back but need to be in proper treatment. You don't want a bigger harder to treat issue come up.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
He was doing better. He seemed to be symptom free, but his stomach was still bothering him - I thought b/c of all the antibiotics. He gained weight and his personality was better, not waking up in the night anymore. We discontinued treatment in the winter when I was undergoing intense IV antibiotic treatment. I was so sick, I could barely keep my meds straight.
My LLMD who doesn't treat children over the age of 8 was guiding his treatment. I had an LLMD here in NC giving him the meds, but she didn't want to do what my LLMD said to do - he pulses/ she gives meds everyday. My LLMD wanted him on little bit of flagyl and the lyme Dr. here didn't want to do that.
I think he probably needed a little flagyl. I am worried we will wake up one day and he will be bedridden. So, yes, definitely trying to avoid that. Hoping to get him in with my Dr. now that they've added a pediatric PA to the clinic.
It's one thing being sick yourself, but then to watch your children suffer is another. I hate this for any child.
Posts: 618 | From NC | Registered: Oct 2009
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posted
We just found out within the last few months that both of our kids and myself have Lyme. I was bitten with a rash 20 years ago but not treated at the time. So theirs is congential.
My dd9 has been sick her whole life with unexplained illnesses. Lots of Doctors. DS11 started having questionable symptoms over the last two years which no one else would have noticed had we not be down this road already with his little sis. I think puberty is helping kick start his Lyme.
Dd's symptoms are very similar to your kids but she also has a lot of GI issues. Her leg pain is bad enough at times that she can't walk. I feel lucky that she is not in a wheelchair.
I'm guessing we see the same LLMD mentioned above who treats in IA & IL and trained with Dr. J.
It's not easy to swallow that I made my kids sick but at least I know what Lyme is and we can get them treated.
Posts: 131 | From Nebraska | Registered: Apr 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
nemom--no, it's not easy to swallow. But, I'm sure had we been properly diagnosed years ago, we wouldn't be in this boat.
Actually, it ****es me off more than anything. Having a chronic illness, then passing it on, then having to deal with their treatment. All the while, my insurance doesn't pay for the LLMD because the big heads can't get their act together.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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ktkdommer- thx for the info, I will probably be PMing you after I talk to the dr and have more questions. I'm just waiting for the appt right now.
My kids go to a very small private school so I'm not as concerned about them falling behind in school. IEP's would be an option but I don't work so worst case scenario, I could pull them out and homeschool them if I had to for a year.
I am heartbroken to see that so many of you are treating your kids It does make me feel much less alone though.
At least our kids will (hopefully) be treated so that this will be a faint memory when they are adults.
I have an appt with the dr on Aug 3. She's has turned my life around in only a few months so I have reason to doubt her knowledge with my kids either.
It's a whole different ball game with kids though. As moms we'd take on the weight of the world for our little people
I am so encouraged by your responses and really appreciate you all taking the time to share
-------------------- No tick bite/rash sick Nov '09 diagnosed Mar '11 Doxy/Zithro LOTS of supplements
Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED! Posts: 127 | From Illinois | Registered: Sep 2010
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It does make me feel much less alone though.
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