Lyme Disease Community
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Avatar universal

Frustrated and could scream!!

At the age of 5 my son started to run a fever, complain of neck pain and stiffness, brought him into the doc's office, got told he has a virus! several days pass, fever climbs higher, he's absolutely miserable! Bring him into the docs, get told yet again...its a virus! Bring him back home, fever persists, stiffness gets worse ,back into the docs, again get told its just a virus and to send him to school on Monday ( it was Friday ) On Monday get him up, start to dress him when i notice a huge big red bulls eye rash Covering 2/3rds of his back. ( was not there the evening before when i bathed him) Finish dressing him, put him in the car and drive to docs office......where i tell the receptionist my son needs to be seen NOW!! That it is not a virus he has, that i believe he has Lyme disease, initially i get refused an appointment, which prompts my temper!! I get told..." You are not a medical professional, you are not qualified to make a diagnosis of Lyme disease" To which i lost my mind!! I turned my sons back to the receptionist , lifted the back of his shirt and showed her the rash!!  Then i state its not rocket science and if he is not seen by a doctor out of this office i will be bringing him to the ER and i will call the AMA and report every single doc in the practice that has seen him and misdiagnosed him!!!  Well they set him up with a appt to see the doc, doc comes in and says Virus still not going away, to which i respond....its not a virus!! Its lyme disease and i promptly show my sons back to doc, trip to the lab ....where they draw labs, they draw enough tubes to do the ELISA and the western blot test!! Both come back Positive!! Doc puts my son on a antibiotic for 5 days!!  All it did was put the lyme into silent mode!! couple of months pass, then my son starts waking up screaming in the middle of the night....his knee's and legs hurt!! I call docs , bring him in, tell him i do not think the lyme disease is gone! get told we treated him with antibiotic its gone, i persist its not....get told he has the flu. Bring him home, still waking up in the middle of the night crying it hurts really bad, next his knee's swell to 2x their normal size ...back into the docs.  To be told...its growing pains!!  This goes on for several months!!! finally after 12 weeks i cant take anymore of the sleepless nights, the crying....watching him be in immense pain!! Back into the docs, to be told yet again " Its not Lyme disease"  Sick of hearing its not Lyme disease i request a referral to a Rheumatoid Arthritis doc.....get told he would do it , well 2 weeks pass, with no referral...call the docs office....get told they are working on it!!! Another 2 weeks pass,....call to find out about it, get told they are still working on it! By the time i did get that referral ...8 months had passed!!  Took an additional 2 months to wait for the Rheumatoid Arthritis appt.....so by the time this doc see's my son...almost a year has passed!! This doc looks at my sons swollen knee's, then does a ultrasound in office , looks at me and tells me my son's lyme has become disseminated!! he then put my son on a 8 week course of antibiotics!!  I make another appointment with my sons primary after that, we go into the appt and doc looks me dead in the face and states " See i told you it wasn't lyme disease .  To which i felt very angry and stated " Evidently you did not review the notes the doc had faxed over to you, or you would know my son has disseminated lyme disease!!  To which i abruptly fired him!!!  Next i find a doc board certified with the American Academy of  Pediatrics!  My son appeared to do well for the next 12 months...then out of the blue started to run fevers between 101- 102. Bring him into the docs, They think he must have caught some sort of virus from school. Back home with orders for him to rest and push fluids. Two weeks pass with him consistently running temps 101-102 range. Back into the docs, they examine him, and tell me we are unsure what is causing the fever , there is no clinical reason we can see for the fever. So once again back home with orders for rest and more fluids, on week 3...my sons temps spike to 104-104.5....back into docs, still no clinical findings , so off to the lab , they draw blood  a ESR and CRP  The ESR came back at 100 and the CRP at 15.3.  They tell me those tests signify something is going on, but do not tell them what! So lab draws every 2 days, he is complaining of stomach pain and bad joint pain. Week 4 hits....fever stays at 104.5 ....even on tylenol and ibuprofen!! One sunday Morning in 5/2011 i wake up to my son crying hysterically( 6:30 am )  , i ask what is wrong, he tells me....I have to go potty...but my legs wont work, So i pick him up and we race to the ER....where he is promptly admitted into the pediatric ward of the hosp! test after test, doc after doc come through my sons hosp room, none know what is making him so damn sick!!! After 4 days in the hosp i corner one of the docs, and demand an explanation on what is wrong with my son.  The doc places his hands to his face, sighs, and proceeds to tell me they do not know what is wrong with him!! that he is dying and they don't know why!!! My heart was shattered...i went straight to the hosp chapel and proceeded to pray and bargain with GOD! Two days later....His fever started to drop...4 days after i get told he is dying....he is fever free...on Day 5 ....they send us home....without a diagnosis!!! My son then misses the last 6 weeks of school...because he is sleeping 18 hrs a day!!!!  Then abruptly it changes and he has insomnia and goes from sleeping 18 hrs a day....to sleeping maybe 4 hrs a night!!  I contact the rheumatoid arthritis doc again, explain what has transpired, this amazing doc schedules my son right away double booking himself!! he decides to do more lab work,  We then get a diagnosis of " Periodic fever syndrome" , he goes on a steroid and seems to do great!! We stop the steroid and 8 weeks after stopping it, my son starts with the fevers again as well as debilitating stomach pain, and joint pain! So more labs ...he does a test called igg4...the first results show a level of 113.3 ( normal is 2.0-80.0) doc says usually Autoimmune Pancreatitis is usually what causes a positive igg4, so he then orders a Amylase/lipase panel....which come back in normal range, , so he wonders if it could be a lab error, so we repeat the test....with the level coming back higher than the first time it was run with a value of 125.3. day after the labs....my son starts to complain of very bad stomach pain, the pain meds were only controlling the pain for 90 mins with each dose. So a decision is made for him to go in for a emergency endoscopy and colonoscopy.....where biopsies were taken. I do not have the results to that back yet, as it takes 7-10 days to process the biopsies.  Back into the docs office this past friday where i get told....he has igg4 related syndrome. On saturday he started a course of Steroid, he is going to be on it til the end of january when we go to the lab and have yet more blood drawn to see if his igg4 levels are dropping.  I am feeling extremely frustrated at this point, today is his 2nd day back to school since being absent since just before thanksgiving. I Guess i am wondering......Could all this still be the Lyme disease? despite being treated on the antibiotic for 2 months?  Nothing else feels to me like it fits.  Can Lyme disease cause an Auto Immune Disorder?
6 Responses
Avatar universal
I'm so sorry to hear your son's awful story the total lack of treatment and ignorance he's suffered at the hands of these various doctors. The worst part is that kind of shameful treatment is pretty standard for people with lyme disease.
I'll spare you my own and my little boy's stories. The short version is that we've both suffered years of lyme disease without diagnosis aor treatment.

Your son has nbever had treatment that could possibly cure lyme disease so he certainly still has it. When disseminated and untreated it causes autoimmune disease in ten percent of patients.
I jhad an autoimmune component to my lyme disease, my son doesn't.
The best way to get the autoimmune problem under control is by taking vitamin D, my son is on 1,000 iu daily and I am on 2,000. My son is 7, that is the standard kids dose. I'd get your son on that right away.

You must absolutely refuse to allow him to be given any steroids ever again, they are terribly harmful for people with lyme disease as they suppress the immune system. It hardly takes a rocket scientist to realise the last thing you need to do with a terrible infection is SWITCH OFF the immune system!!!

Your son needs a proper ILADS resgistered lyme disease expert to treat and cure him. email ilads to ask for a doc in your area and tell them how far you can travel to widen your option, as the docs who treat kids always have really long waiting lists.

Your son will need several antibiotics together for several months to deal with lyme disease at this late stage. Brace yourselves that it may not be months but years. My son has been on abx for 3 years and is almost cured. You have to be yhour son's own doctor now and waste no tim e returning to doctors who are obviously ignorant of lyme disease.
Avatar universal
Your story is painful to read; I can only imagine how awful it has been to live through.

There is much ignorance in the medical community about Lyme, and I would do as You'veGot says:  find a Lyme specialist without delay.

ILADS (the International Lyme and Associated Diseases Society) is the main voluntary group for Lyme specialists who think more progressive thoughts about Lyme and other infections the same ticks often carry.  If you email ILADS at

                     contact [at] ILADS [dot] org

and tell them where you are located, how far you can travel, and your son's age [in case they have a pediatric specialist to recommend], they will send you one or more names of docs.  That doesn't mean the docs will be perfect, and if you don't get a good vibe with the first one, go to the next on the list till you feel it's a good fit.

Your trust in your child's docs has been admirable, but like many of us, you've learned the hard lesson that the medical profession is in disarray because most of them simply don't 'believe' in Lyme.

I am not medically trained, but went through Lyme myself and also with my kid, and after 20 docs finally found an ILADS doc (before I even knew about ILADS) and were properly diagnosed and treated to good effect.

About steroids, YouveGot is right, they are the wrong thing to do in Lyme, because steroids lower the immune system reaction, which is absolutely needed in a bacterial infection like Lyme.  (As to whether autoimmunity can result in Lyme, I personally am not persuaded on that point, but in any event a bacterial infection like Lyme needs antibiotics.)

Lyme is everywhere, but many docs refuse to acknowledge that, and once you find the right doc, you'll be on the right path.  ILADS doesn't vet its members as far as I know, and if you get an oddball doc who doesn't seem to 'get' what's going on, go next down the ILADS list and take your son to another doc.  Lyme is still being figured out by the medical profession, so there are well-meaning docs who follow certain approaches that may not be effective or sensible.

Don't be too trusting of any doc.  I am guessing you learned that hard lesson already, but it also applies to ILADS docs, because there is no test to pass to join ILADS.  There are many good docs who are members of ILADS, and I say this only to keep you from going down another bad road.

Please let us know how you do and if we can provide any other help -- best wishes to your family --
Avatar universal
I am so sorry to hear your story!  YES!! He still has Lyme Disease!  His pediatrician's behavior is inexcusable.  An erythema migrans rash is always indicative of Lyme and even the IDSA recommends treating it for three weeks with Doxycycline, Amoxicillin for kids 8 and under.  I don't know where he came up with five days, but it sounds like a generic treatment for an unknown infection. He clearly didn't think it was Lyme in prescribing that. (I personally would file a complaint against him and would certainly never see him again. Only when medical boards get tons of complaints will they make an effort to better educate doctors about Lyme.)

You must get your son as soon as possible to an ILADS Lyme Literate Medical Doctor. He needs to starts treatment as soon as possible.  And do not allow him to be given steroids again. It makes the infection worse, even if there is a short period of feeling better, and also makes it harder to cure.  I am an example of that!  I went into an accelerated decline after I was given prednisone.

I find it mind boggling that highly intelligent and educated professionals wouldn't be able to connect the dots in your son's history and realize he has had Lyme all along and that the 8 weeks didn't cure it.  It is amazing to me how they will get so stuck in their dogma, their belief in what they were told (that Lyme is always completely cured in 3, or 4 or 8 weeks of abx), that they would let a child die (or so they thought) rather than question their beliefs.

In finding a LLMD, be sure to check with a local or state Lyme support group to ask who is good. Not all docs who claim to treat Lyme know what they are doing. Start now, as the good ones have waiting lists. Don't hesitate to travel to get to one, as getting your son well is primary. You don't want him to lose the rest of his childhood to it. The only pediatric Lyme expert is Dr. Charles Jones. I believe he is in CT.

Also, a LLMD will know to look for coinfections, other diseases that come along with Lyme from a tick bite.  I have had two of them: Bartonella and Babesia.  Babesia especially is known to interfere with treatment for Lyme. It is a parasite and needs different meds to treat it.

Lyme likes low oxygen environments, and so it goes for joints, connective tissue, organs, and the nervous system.  Organs affected in me include the kidneys, stomach, intestines, gallbladder, liver, and brain. For a few months, I showed evidence of pancreatic insufficiency. I also had all but one symptom of adrenal fatigue syndrome, even when my cortisol tested "normal."

Some Lyme patients show "normal" on all or nearly all blood tests, which further confuses doctors. I agree with the others in saying not to waste your time on doctors who don't or won't understand Lyme. You will not convince them, no matter how much evidence of it your son has.

Keep us posted!

1763947 tn?1334055319
So sorry to read your story too but as the others said, yes he still has Lyme and possible co-infections of Lyme. Rico mentioned Dr Jones however I know that the medical board was after him so I am not sure if he is still practicing.

My LLMD will see kids and there may be some more that will.

There are grants you can get to help pay for your sons testing and LLMD appointments if finance is a problem. Let us know if this is the case.
He needs to see an LLMD ASAP.

Many of us get treated like you and your son did and many good doctors are getting run out of practicing by the medical boards.

Keep us posted! Good luck.
Avatar universal
Run as far away from mainstream medicine as you can!  I've lived with several types of microvermin for over 50yrs, it isn't a good life.  Don't trust any doctor, research and learn as much as you can about Lyme and possible coinfections yourself.  I do so much my LLMD is even learning from me.  Think outside the box, there are lot of herbals that are effective against various microbes.  Research is on the web now that I sure wish I'd had in the 90s.
Avatar universal
been there  same   deal BUT  I was going  to vet college and we learned about lymes...had to take a BOOK with PICTURES  to the doctor   to get my kid penicillin..listen  Amoxicillin is a MAN MADE  drug  it does NOT cross the spinal column..so it does NOT get to the BRAIN where the spriokeets HARBOR ( just like syphilis) .)  what KILLS them is Pennicilin-K  liquid.. ( Penicillin POTASSIUM..)   it is a purple  liquid  they mix it for you... IT IS A .LIVING PENICILLIN ..  TAKEN for  3 weeks  ...I  had to go to Hershey Medical for this perscription... demand it  throw  a FIT.  do whatever you have to do to get it for your child.....steroids?  my God  they could kill hgm..they turn OFF the immune  systEm...I donT know what state you live in  I am PA good luck  dont give up.. get a LYMES SPECIIALIST
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