please help question about my daughter

[Raerae336]

Hi all. I'll try to Keep this short. In June I noticed my daughter had som enlarged lymph nodes. The doctor did a cbc and all was fine. so last week at her physical this new doctor noticed that all of her lymph nodes were inflamed and ordered a bunch of tests. Her white blood count came back in the normal range but shifted to the left meaning her Bone marrow is sending out premature white blood cells.  The body usually does this in response to a bad bacterial infection or in transition to cancer.  Her liver function came back abnormal.  A test for inflammation came back abnormal.  She tested positive for lymes on the snap test but two other tests that relate to lymes came back negative so we're waiting on the final test for lymes but my doc said she has never seen somebody test positive for lymes on that test but negative on the other two like my daughter did.  She doesn't have any symptoms of lymes if you ask me. She has in the past complained a couple times of a headache but then was fine She is tiring more easily than normal when playing and has had a few random fevers but then they go down and she's back to herself.  If she's had lymes since June. .. wouldn't she have a load of symptoms?  My doctor said if the final for lymes is negative she's sending my daughter to children's to see a hemocrat specialist.  Any advice?

[mojogal]

I wish you luck in everything you face.

[JackieCalifornia]

I admire your strength in carrying on and getting through all of that -- please do stay in touch with us and let us know how you are doing.  

We will be thinking of you and send you all good wishes -- !

[harpsie]

Yes it was scary alright!

It took ages to diagnose because Lyme disease isn't very common in Ireland,so they thought!.They thought I had Guillian Barre disease.My bloods had to be sent to Germany which came back positive a month later for lyme.Yes I was given iv antibiotics the whole time.A number of people have contracted lyme since me,a few were paralysed and still paralysed from their waist down but no one as severe as I was.There are signs all over the place now about lyme.

I was recovering from lyme disease then a few months later I got meningococcal septicaemia(another nightmare).Lyme disease really affected my immune system so its infection after infection after infection.I have had septicaemia three times since.I am getting better at walking,I can walk with crutches now.I had to learn how to do everything again walk,talk,read,write the whole lot!I do have memory problems which can be frustrating at times,I forget where I put things and I have poor word recall etc

A few months ago I was diagnosed with aplastic anemia so I am getting a bone marrow transplant in a few months time.I'm 19 so I'm young so hopefully I will get well soon.It has been very tough but I have stayed positive the whole time and I think that is the key to getting better.

[Ricobord]

Wow!  You have really been through the wringer.  The only time I've heard of such severe illness and paralysis so soon after a tick bite is when I was in Australia and I heard about tick paralysis. They say it's caused by an allergic reaction to the tick saliva, and it happens while the tick is attached. They say it can be fatal if the tick isn't removed fast enough.  

I didn't know Lyme could cause a similar reaction! How awful.

Did they give you antibiotics the entire year while you were hospitalized?  How are you doing now?  Do you have any permanent damage?

(Sorry if I'm peppering you with questions, but I'd love to know how you're doing after such an ordeal.)

[harpsie]

I hope your daughter gets better soon.I had lyme disease a few years ago I got it here in ireland.I got a bite on my leg on a Friday,a week later a rash started to appear,swollen lymph nodes,headache, nauseous,had a convulsion,rushed to hospital,became paralysed from neck down within a few hours,placed on life support and put in an induced coma for 3 months-during those three months had sepsis,meningitis,endocarditis,pulmonary odema....the list goes on....remained in hospital for a year.
I hope your daughter gets treated fast,she needs iv antibiotics,oral antibiotics aren't enough.
So much has happened to me since I had lyme,let's just say I'm lucky to be alive!
Best wishes I really so hope she gets better soon.

[Ricobord]

I strongly encourage you to go to a LLMD and get your daughter a Western Blot test at IGeneX.  If I'd had a Western Blot done at a regular lab, it would have shown only a band 41, which most people show.  But IGeneX shows other relevant bands that the "official" test ignores.  I had 2 Lyme specific antibodies on the IGeneX WB.  It's a long story, but testing is just one part of the controversy about Lyme.

From what I hear, WI and MN are rather hostile to doctors who don't follow the official guidelines about Lyme, so please don't be surprised if your daughters' doctors, including specialists at prestigious hospitals, are dismissive of Lyme because of her negative blood tests.  I was told I didn't have Lyme or Babesia because of my (false) negative tests, even as they had no answers for me.  But I did.  I was only diagnosed and treated because I went to an LLMD.

Time is of the essense.  Lyme gets worse with time, and you don't want it to get entrenched or it can be a nightmare to treat.  Pay out of pocket if you have to.  Travel to get to an LLMD if you have to.  

I'm glad she's being tested for Anaplasmosis (Ehrlichiosis).  I think testing for that particular infection is more reliable.  However, she should really get tested for Bartonella, too.  Nearly everyone I've heard of whose lymph nodes all swelled up had Bartonella.  

She could even have Bartonella by itself, as many of the symptoms mimic Lyme, but Bartonella is more likely to get nasty when Lyme is present. It's like they egg each other on.  

Because these two infections require different antibiotics, you need to find or exclude both of them.  Note that testing for Bartonella is frequently false negative.  Unfortunately, few doctors know much about it and even fewer are comfortable making a clinical diagnosis.  A good LLMD will.

Keep us posted!  We have a special place in our hearts for kids with tick borne disease!