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]

Ditto what Jackie said and co-infections are something that requires a different medication. I had 3 and know we use a combination of different meds for those so the LLMD will test for co-infections if you ask. My Babesia came back negative at first but a good LLMD will treat her based on symptoms alone because the tests don't always come back positive.

[JackieCalifornia]

Different docs use different meds in different combinations, and it also varies on what co-infections came along with Lyme.  There's no one-size-fits-all in Lyme treatment, so don't be surprised if your daughter's meds don't match those of others.  And on top of all that, Lyme is a developing area of medicine, so things are still in motion.  That's why finding an experienced Lyme doc is the best thing to do.

[harpsie]

I just want to wish you and your daughter the best of luck.I'm glad that she has started treatment for lyme disease but I don't think that amoxicillin is enough to get rid of it.She needs iv ceftriaxone and flagl.Once she is given the right treatment she will hopefully be ok but again amoxicillin is not enough.
Best of luck with everything

[JackieCalifornia]

Thank you for letting us know -- sending you all good wishes for your family and especially for your daughter.

From what I have read, the doc is right about not giving doxy to children, because it can damage tooth enamel in still-developing permanent teeth.  I'm not medically trained, but having had Lyme and a co-infection (and my teenager had them too), I would begin immediately to look for a Lyme specialist (an "LLMD") as mentioned above.

You ask, "My question now. ... if it is Lyme... Will it effect her later in life?  Or if she gets proper treatment now will she be ok?"  If properly and fully treated, there is every reason to believe your daughter will be fine.  

The trick is finding an MD who truly understands Lyme.  When you say you are going to see "a specialist", what kind of MD is the doc?  This is where the conflict between Lyme specialists (LLMDs) and other docs comes into play, and it is a very different situation than in any other part of the medical world that I have encountered.  Earlier messages in this thread (from me and others) discuss this aspect of Lyme, and I would urge you to read the messages above again before you settle on an MD going forward, because incomplete and ineffective testing (for co-infections) and treatments (by using ineffective medication) will not cure your daughter, from what I have read and experienced.

From my reading and understanding, neither doxycycline nor amoxicillin is fully effective in treating Lyme except in its very very early stages, because the Lyme bacteria can hide in areas of the body (called biofilms) where these common antibiotics cannot reach by themselves.  Additional 'cyst-busting' antibiotics such as Flagyl/metronidazole are also required.

Docs who are not LLMDs -- even if the docs are infectious disease specialists -- simply don't diagnose or treat Lyme in the same thorough way that LLMDs do.  So I agree with the comments above about finding an LLMD without delay, even while your daughter is still under treatment currently.  

I have close family members and friends who MDs and nurses, and they take the expected path that your current docs are with regard to Lyme.  I also learned that nonLLMDs are often hesitant (ok, they often downright refuse) to treat a patient who is being treated by an LLMD, who are often viewed as witchdoctors by so-called mainstream medicine.  I say this only to alert you that you may alienate the current, 'mainstream' docs if you are too upfront with them about planning to see an LLMD.

Such are the politics of Lyme.  Someday it won't be this way, but for right now, to find and obtain appropriate treatment, the mainstream docs have their uses until you have found and established a relationship with an LLMD.

Take care -- best wishes to you all --

[LazyMoose]

Sorry to hear this has escalated rather quickly. So you really dont have much time to take all this information in.

LLMD or not (?) at least this Dr is doing something. I would ask how long he plans on keeping her on antibiotics after they get an idea of how shes handling it - that is the difference between an LLMD and one that isnt.

Dont hesitate to look up a meeting from Minnesota Lyme Association, lots of local info for you. North Branch, Forest Lake and White Bear are are all close to you.

"Or if she gets proper treatment now will she be ok?" No one hear can say for sure. If treated early, the better, and that seems to be the track your on.

But most importantly is the length of treatment to assure the bugs are all gone. This is where LLMD's come in and regular Drs can fail.

A lot of people have this and dont even know it, yet some are bed ridden, it effect people differently.

A positive test is reassuring, no one wants Lyme, but wondering is no fun either. And negative tests are often false neg.

The Lyme Antibody Test - do you know what lab did this per your copy of the test sheet?

[Raerae336]

Thank you everyone!  I just wanted to update you all that we ended up at the emergency room last night she had side pain high fever accompanied by high heart rate.  The doctor decided to start treatment for lymes disease.  She's on high dose of amoxicillin for 21 days. Studies suggest that doxy isn't safe for children her age and that amoxicillin is just as effective in her age group. My question now. ... if it is Lyme... Will it effect her later in life?  Or if she gets proper treatment now will she be ok?  We're going to see a specialist this week but just wanted more insight.  Ps her Lyme ab screen didn't say a number just positive.

[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!

[Susann83]

Hi raerae- I would 2nd what others have said.  Don't dismiss Lyme.  My husband was misdiagnosed before he was treated for Lyme.  We lost precious time, and his disease grew much worse.  Fortunately, he has made an almost full recovery.  Don't ignore other possibilities, but don't discount Lyme.  Somehow this crippling disease has got ridiculously politicized, and therefore marginalized.  You must act as an advocate for your daughter to make sure every avenue - including Lyme - is properly explored.

[LazyMoose]

Look up Minnesota Lyme Association. I can PM you with more info if needed. They have several meets close to you, every month. If you go to a meeting they will mention several LLMD's for you, as they protect them.

Your town hosts the very best and newest LYME test the no-one hear even mentions yet. Its the i-Spot by Neuro Science in Oceola WS. I have a contact there as well. Some MD,s in the TC Metro area are now using this new test. It measures the reaction of Killer T cells when mixed with active Lyme bacteria.

Only dawback is in long term cronic Lyme that has rendured the killer T cells useless, but it will show that too. That coupled with a low CD57 can generally mean that something has lowered the effectivness of T cells, which is not normal at all.

[cave76]

You gave the information "her Lyme ab screen (LYMSCR) is positive."

Was there a number assigned to that? Often there's something on the lab report that will look something like this:

Abs Score:

Negative     60 ~80
Pos             >80
(Those are just made up numbers but the 'less than' and 'greater than' marks will be there)

So a number of, say, 85 would be positive.

Or did the test just say 'positive'? Which is poor way to give results, in my opinion.

AND THIS IS IMPORTANT:
Would you tell us the name of the lab that gave the results please? Plus the number of th positive score?

Thank you.

[JackieCalifornia]

I am not an expert on the various types of tests, and my eyes just went swirly reading about the various tests and how reliable they are.  If any of my own tests came back positive at all, I would be off to see a Lyme specialist and let him/her tell me it's not Lyme.

Part of the problem with many of these tests is that they rely on the immune system reaction to the Lyme bacteria, but Lyme can and does suppress the immune system reaction ... so you can have Lyme but not be positive on a Lyme test that looks for antibodies against Lyme.

In addition, some tests can give a positive result, but it is read without reference to those positive markers for various reasons, including that a vaccine was developed against Lyme years ago (unfortunately ineffective), but the vaccine can cause a positive test result even in the absence of actual infection, so those markers are excluded from reading the test, even tho the vaccine is no longer given and few people seem to have taken it anyway.

If I had a Lyme test come up with anything positive at all, I would be off to see a Lyme specialist and let him/her tell me whether I have Lyme or not.  Lyme will not go away by itself, and it can be terrible to live with.  If there is anything positive in those tests, I would find a Lyme specialist right away.  If you need help doing that, please let us know.  Better one wasted appointment than years of misery.

[mojogal]

I was misdiagnosed with Lupus and MS among other things. Lyme is called the great pretender because it mimics so many other diseases.

[Raerae336]

Thank you! I requested copies of her labs.  Here is what's off in case it helps you guys think of anything.  Her neutrophils are high at 69% her lymphocytes are low at 23% her creatine is slightly low at .4 her alkaline is high at 198% her Lyme ab screen (LYMSCR) is positive.  Lyme immunoblot (lybl-g) negative.  Lyme immunoblot IgM (LYBL-G) negative.Waiting on one final test for lymes.  Her ESR or SED rate is also elevated.

[cave76]

It's VERY common to mis-diagnose Lyme as MS, RA, Lupus and other diseases. Most of us here have had that type of mis-diagnosis in our searching for a reason for why we were sick.

Only after being treated for Lyme did we start to get better.

[cave76]

Anaplasmosis used to be called Human granulocytic ehrlichiosis and an large amount of people who were infected with Lyme disease had that also. (Know as a co-infection)

The treatment of choice is usually doxycycline, but sometimes other antibiotics are rx'd. Your daughter may have other health problems too---- that can happen and muddies the water a lot. But Lyme does 'pretend' to be many other illnesses----- why it's called the Great Imitator. Until you're tested correctly by an ILADS doctor you may not know since your doctor seems to be following 'mainstream' information about Lyme-----and that can be a big problem as to whether she gets better or not.

I can't say that she DOES have Lyme and I won't. But I encourage you to read articles at ILADS.org and have some knowledge of this Lyme disease controversy.

[Raerae336]

Thank you guys!  The clinic just called and I'm supposed to take my daughter in for a test for anaplasmosis today. From the research I did only it seems that if you are showing antibodies for lymes but do not have lymes disease you could have an autoimmune disease Like RA or lupus?

[mojogal]

It sounds like your daughter has what I have which is Bartonella, a co-infection of Lyme. All glands are swollen. It can have neurological symptoms too so I agree with Jackie to see a LLMD to be sure before it gets worse.

[cave76]

I'm sorry your daughter is showing some of the signs of Lyme disease and I can understand that you're very worried.
Until you can find a Lyme specialist that will test and treat according to the ILADS guidelines you may not know if she's infected with Lyme or not.

The test that was given (SNAP) is an interesting choice for a doctor to use. It's basically the same as  the CDC approved test for Lyme (ELISA) but is significantly less sensitive than that ELISA.  Meaning that it's not a test that most of us would like to use.

It was highly touted when it first came out (IDEXX) but hasn't shown much promise. One the main selling points of the SNAP is that it only takes 8 minutes to perform! I would prefer the test take longer and be better.

Igenex is the only Lyme specialty lab in the U.S. Perhaps her doctor might consider re-testing her through them?

[JackieCalifornia]

and PS

although it seems like infectious disease MDs should be the logical ones diagosing and treating Lyme, they are in fact some of the worst, because they are totally on board with the CDC/IDSA standards that Lyme is hard to get and easy to cure.