My son is 8 and was just "clinically" diagnosed with Chronic Lyme disease. Lyme tests came back negative but his CD-57 Natural Killer score was only 10. He's shown most of the following symptoms for about five years:
-Chronic pain and weakness: Yellow skin/pallor, frequent headaches, extreme inexplicable abdominal pain, aching legs. Teachers at school report he's "too wiped out" to participate in PE or recess. He visits the school nurse several times each week to rest.
-Occasional vomiting accompanied by headaches with no fever or other signs of cold/flu. Chronic diarrhea.
-Experiences extreme emotional distress (e.g., anger, rage, sadness). He's threatened self-harm since about age 5, and can be very aggressive during and "episode." Had put holes through walls, and cries because he can't feel himself becoming angry--only realizes that he is losing control of himself and says he feels like his mind is "empty" or that he is "dizzy."
We lived in Georgia for 5 years and played in the woods daily. I've pulled dozens of ticks off each of my children (we did a thorough check each night at bath time), so Lyme is not outside the realm of possibilities.
We've seen a million doctors though and none of been able to give us answers. One pediatrician suggested that practically life-long diarrhea was his "normal," and our child psychologist thought he just needed a stricter schedule and more reliable routine. A regular bedtime is all well and good, but it certainly didn't get to the root of the problem.
I can't bear to watch my son suffer any longer. Is the CD-57 NK as fool proof as it sounds? Do all signs point to Lyme or is there something we're missing?!?
The CD57 is not at all fool-proof ! In fact I'll go as far as saying it's almost useless.
Here is what one doctor blogged:
"...I have been ordering this test for years. Thousands. Unfortunately, I am left with the conclusion that it has been of very little help to my patients. I have seen no correlation between CD57 and disease activity. Patients in clinical remission may have very low levels and patients with end stage tertiary Lyme disease may have very high levels. Individual immune responses are difficult to predict.
Dr. B has suggested that the CD57 test might be an inexpensive way to screen for Lyme disease. I do not agree. Physicians may order CD57 levels because they are looking for evidence to support the diagnosis. I do not think this approach will not hold up to careful scrutiny. Many patients unfortunately are getting the awful 13 band test performed at "mill labs."Patients don't want to spend the money to get a decent Lyme test....
...in my opinion and experience, this marker has not been clinically useful."
I, and many others have gotten a normal CD57 number while being at our sickest. Others have gotten very low, almost zero, while feeling almost well with very few symptoms.
As far as your son's symptoms---- they can be Lyme, and if a doctor wishes to put him on antibiotics I'd say that could be the beginning of the end to your son's problems. Other reasons should be explored by a good llmd and usually are.
Is he on antibiotics now? Please report back to us.
Cave just never lets a post regarding the CD57 count slide. Continue to spread the word cave!! I think you're doing an awesome job of it :)
I don't really have an opinion regarding this test. I'm not a physician, so I am not running CD57 counts on individuals. Doctors continue to do this test for a reason though, I'm sure. I'm hoping to have mine monitored (insurance covered) just to see what comes of it. Before treatment it was 5 and after 4 months of treatment, it was an 8. Therefore it will be interesting to see where it goes.
Just know that there are other things that can lower the CD57 count i.e. viruses, mold exposure, ect
But I'm not sure how useful this test is in children.
No I never let the CD57 issue slide because there's such mis-information about it that I just can't help presenting another viewpoint---- one held by doctors and patients alike. I'm not a doctor either but I've read a bazillion patient stories about the test on various forums and the results haven't dissuaded me from my opinion. Do the same yourself, anyone, and you'll see what I mean.
But if a person persists in wanting to test (hope their ins. will pay or they can afford) then that's certainly their prerogative.
My LLMD has been using the CD-57 since I started treatment 2 years ago and it has followed my illness exceptionally well. I have heard of cases where it does not follow the way the illness is progressing.
To me it's something like the IgeneX co-infection test. It most cases it is useless. It says I am negative but I am clearly positive for Bartonella and Babesia.
Lab corp said I was positive for mycoplasma but my LLMD said she rather wait a month and take it again to better prove that I have it.
So sorry your son is so sick! How incredibly frustrating!
Have you been in touch with the Georgia Lyme Disease Association? They've had some very interesting articles posted on their FB page.
Their posts have said that there were 700-800 reported cases of Lyme in Georgia per year before the CDC implemented its strict reporting criteria, after which reported cases in GA plummeted to a few dozen. The criteria for reporting Lyme outside upper New England and the upper MidWest are more strict because they insist Lyme isn't "endemic" outside those area. (What a sick joke.)
It's really mindboggling how they can just ignore so much data and say there's no Lyme in the South.
The GLDA has also posted articles about how people in the South are much more likely to test false negative on the CDC testing protocol. It appears that there is far more genetic variety of the bacteria in the South, which don't match up to the test interpretation (which was developed in New England and never validated outside New England).
There are also other species showing up in the South that don't bring a positive result on a Lyme test, including Borrelia Miyamotoi (there is a new test for this one--you could Google it and ask your son's doctor about it).
If you're looking for solid proof your son has Lyme, you may or may not get it. You could spring for the culture test at Advanced Labs if cost isn't a concern. It's not approved by the CDC yet, but the labs internal testing shows it correctly finds Lyme 80% of the time. This is better than a Western Blot.
If a knowledgeable doctor has given him a clinical diagnosis, then I personally would proceed with aggressive treatment. The poor guy has suffered long enough at the hands of misinformed and ignorant doctors and he deserves a chance to get well.
Many a patient has only tested postive for Lyme after months of treatment when antibody production rises enough to show up on a Western Blot.
One more thought: Lyme can definitely cause the moodiness, but just in case, I would also get him tested for Bartonella. Bartonella symptoms have a lot of overlap with Lyme, and sometimes neuropsychiatric symptoms are because of Bart. If he does have Bart and it's not treated, he'll only partially improve with the Lyme treatment.
Thanks for you input. I especially appreciate the info about Bartonella. I think we need to look into something called Babesia (spelling?) as well as I've heard it's one of the few illnesses that can cause yellow skin.
I should say that our doctor did not suggest the CD-57NK was fool-proof. I made that assumption based on what other members had posted. I'm so new to all of this!
My son is currently taking amoxicillin and several herbal supplements to support/boost immune function. Our doctor explained that he might have tested neg for Lyme simply because his immune system is so worn down right now. The current meds are being taken in an effort to trigger any sort of immune response. We were told we'd need to retest for Lyme after a few months to see if anything has changed. The doctor said she would ordinarily begin Lyme treatment right away for a patient with his symptoms, but because he is so young (and sickly) she'd like to have lab work to back up her diagnosis before she starts the triple-cocktail antibiotics needed to really kill Lyme.
Does it sound like we're on the right track right now? Our family currently lives in Seoul, Korea, but I flew to the states with my son to get some answers. We'd planned to see several pediatric specialists, but the doctor we're seeing instead comes highly recommended from two relatives we have (one with lyme and another mychoplasma). What other things should we be looking for? Are there other questions I should be asking?
My son is not autistic, nor does he appear to have any behavioral or learning disorders. The wild mood swings seem to be directly related to this mystery illness and we're more concerned about this particular symptom than some of the others.
I hope your son feels better. Depending on where you are I would try to get him into an LLMD.
I was on 18 month of antibiotics and just got this bad news the other day that I actually got worse rather then better during that time. I have decided to try dr Lee Cowden's herbal program that you can read about online. I was on the Stephen Buhner herbal program for only a couple of weeks because of the program cost . You may want to consider one of those for your son. I have heard very good results from people who have been on both.
Yeah, I figured you'd have the same question ;) I just thought, perhaps there could be another indicator of progress that I may not be aware of. I'm in need of some sort of indication that treatment is or is not working!!
His symptoms don't sound too much like Lyme to me unless the pain is in his joints and he feels like cracking them all the time. You can hear them crack. Also there is a low grade fever. Don't turn that yellow with Lyme. For me there was no vomiting but too tired to eat and not hungry. Pain in joints is the main complaint and frozen half face with trembling (Bell's Palsy). Did he get bit? Remember getting bit? Have a bull's eye rash? Classic Lyme. Don't rule out hepatitis A, B, or C or some other disease with liver involvement. He has major gastro symptoms. He is not running a fever. A gastroenterologist might have a clue or a rheumatologist. Getting a proper diagnosis is half the battle.
Lyme disease is called the great intimidator for a reason. Most people do not recall being bit, let alone a "bulls eye rash". Most people do not have "Classic Lyme". I do not think bells palsy is all too common. A fever is not necessarily common either. I rarely ever have a fever, even though I tested positive for Lyme. Actually, quite a few individuals with Lyme actually run a lower than average temperature due to the suppressive effect it CAN have on the thyroid. But I have normal thyroid function and my temperature runs in the lower range. I agree that people do not typically turn yellow with Lyme, but anything is possible with this disease.
If the original poster has been through "a million doctors", I'm sure that a CMP has been done to rule out liver disease.
Sorry, but there is just nothing classic about Lyme!
There are plenty of people with Lyme who don't have cracking joints or Bell's Palsy, especially people who didn't get Lyme in Connecticut. It's one of the big myths about Lyme perpetuated by the rheumatologists who first described and studied the disease. Once those became the primary symptoms to look for, it became the primary symptoms they saw.
In the meantime, an epidemic rages out of control across the country and the world of people who have Lyme without cracking joints and a half numb face.
According to what I've read, children with Lyme often have unusual presentations/symptoms. I read a paper written by a LLMD about unusual cases of pediatric presentations, such as one with primarily massive migraines, another boy with primarily testicular pain, headaches and fatigue, and another one with primarily psychiatric symptoms.
Definitely get your son tested for Babesia. But be warned the tests can often be false negative. I was false negative on 3 different Babesia tests at 2 different labs. I finally got a clinical diagnosis nearly a year later, and when we started treating it, I got worse for about 8 months before I finally improved. I've had every Babesia symptom there is, I think. How could I be so loaded up with parasites and test negative 3 times?? Just goes to show you that we need better tests.
Babesia sometimes needs to be a clinical diagnosis, too. I wish I'd gotten mine sooner.
I commend you for taking such significant steps to get your son treatment! From what little you said, it sounds like you're at a doctor who knows what s/he is doing. Given the years of illness, know that it will take a while (more than a year?) for your son to get through treatment. There will be ups and downs and steps forward and steps back. It isn't a linear process, so don't get discouraged.
Treatment has to follow what the patient can tolerate. Some people can't tolerate long term antibiotics after a while and end up taking natural and herbal remedies for a time or indefinitely. I had to take a summer off myself, but went back on abx when my kidneys recovered and my symptoms started worsening. Some people do great on herbals. In my case I've found that I need high doses of high powered abx to see improvement.
Since Bartonella and Babesia testing sound appropriate based on symptoms, perhaps your son should be tested for other coinfections, too. Depending on where you think he was exposed, there are several other possibilities, such as Anaplasma and Mycoplasma.
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