We finally got the results back for my wife and son and I don't know what to make of them.
Myself, it was easy because I showed positve very cleary on 8 bands...
My sons results are as follows:
IgM: No Bands Present IgG: Band 41
Sorry I had to edit this post.
I read the results wrong....
Apparently my wife is all negative. But a kda band 60 showed?
I strongly disagree because of her symptoms.
My son has a positive band 41 which I know is the Flagella/ Tail according to Dr.B's Guidlines.
Any Clue???
[ 03-26-2009, 07:38 PM: Message edited by: Kreynolds ]
Posted by METALLlC BLUE (Member # 6628) on :
Who performed these Western Blots?
Posted by Kreynolds (Member # 15117) on :
METALLIC BLUE:
I edited the post...
I read the results wrong, but my son still showed postive for band 41 on the IgG.
MDL(Medical Diagnostic Laboratories) performed the tests. They come highly recommended.
Any clue about my 2 1/2 year old??
He was bit 2 years ago and we are planning to bring him to Dr. J, but why the one band?
Posted by Lymetoo (Member # 743) on :
Igenex tests for ALL possible bands. You might want to consider it.
Band 41 is significant. And remember, some of the sickest people have few bands showing up. Their immune systems are too weak to register much of a response......
but personally, I think it's the lab.
Posted by Kreynolds (Member # 15117) on :
What do you mean by saying "it's the lab"?
I'm just really concerned about this....
[ 03-25-2009, 07:38 PM: Message edited by: Kreynolds ]
Posted by Kreynolds (Member # 15117) on :
Anyone??
Posted by Amy C (Member # 19297) on :
I think they mean that Igenex is suppose to be the best lab for testing Lyme.
So maybe they think the lab you used didn't test all possible strains or something like that?
Do you have an appt to see an LLMD for either of them? Do they both have a lot of symptoms?
Both my boys had 41+ and a few IND bands. I took their symptom list to an LLMD and they were clinically diagnosed and are about to start meds in a few days.
Posted by Kreynolds (Member # 15117) on :
I have heard both good and bad things from Igenex...
The lab I used is used by some LLMD's in my area.
My son is schelduled to see Dr. J, but the soonest is September...
Thanks for your help and hope your sons are doing well!
Posted by seekhelp (Member # 15067) on :
I too thought MDL was decent. I so wish Igenix would clarify the exact strains they test for compared to other labs. I am so curious if this second strain they look for is much more prevalent than the one all other labs test for. Know what I mean?
I don't care about the other bands not tested by commercial labs like 31 and 34kDa. I want to know why they pick up the typical bands much more often than other labs even if the blood is sent at the same time from the same patient. That's the million dollar question in my eyes.
Posted by Lymeorsomething (Member # 16359) on :
All labs get criticized at times but Igenex tests for all related bands and they list on the results page all bands that were positive, negative, or indeterminate...which can be helpful...
Check out their website....
Posted by Lymeorsomething (Member # 16359) on :
In my case, I'm consistently positive on 31 and 34 with usually one or two other bands mixed in...so in this way only Igenex would have picked them up...
31 and 34 may be markers for chronic (persistent) infection in some cases...
I'm not saying Igenex is flawless but their blot is comprehensive and certainly helpful in conjunction with other WBs...
Posted by Abxnomore (Member # 18936) on :
I'm not familiar with band 60, is anyone else? I don't see it in Dr. C's link.
Posted by tickbattler (Member # 14873) on :
My 3 kids see Dr. J.
Dr. J no longer uses MDL because he doesn't feel they are as good as they used to be. For lyme WB tests, he now uses Clongen labs. I think Igenex would be his next choice for WB.
tickbattler
Posted by Geneal (Member # 10375) on :
Band 60 can be present in many types of bacteria, including bb.
Maybe want to do an antibiotic challenge for the wife and child.
Then retest.
Especially if your wife is highly symptomatic.
Hugs,
Geneal
Posted by Kreynolds (Member # 15117) on :
To all that responded... Thank you!
Geneal: My wife seems to have more symptoms then my son, but was only able to come up with Band 60.
My son showed a strong positive for Band 41.
I think I may try Igenex next although the thought of putting my son through the pain of getting his blood drawn again is saddening.
Myself I have always showed positive IgG for Bands 18,23,39,41,58,66,and 93.
My case with Lyme and Co's is closed... it'a all there in black and white.
I am saddened to know that my two worlds of joy could possibly be headed on the road where I am now.
I know that it was mentioned that Dr. J doesn't go with MDL anymore. I wish I would have known that prior to getting it done.
The fact that my son did show positive for Band 41 is mindboggling. Ughhhhhhhhh!!!
I have an appointment with Dr. J in Sepetember and am currently on a waiting list for cancellations.
I am just curious if he will treat my son on a clinical basis given the single band?
As for my wife I don't know what to do... I'll get the kits from Igenex and go through the process of finding another doc to write the order.
God knows if I go back to the same two that wrote these they will kick me out for sure!
I thank all of you for your help and support at such a tough time.
Posted by METALLlC BLUE (Member # 6628) on :
I really think an Igenex WB IgG and IgM needs to be done, MDL just doesn't have a strong enough western blot in my opinion. Good lab, but Igenex holds the crown for the WB.
Posted by Kreynolds (Member # 15117) on :
What about Clongen Labs??? I just got off the phone with them and they really know their stuff.
I want to run Panel E which costs $2,015 per kit, Yikes!!!
That specific panel has everything in it.
So that would be $4,030...
I dont care if I go bankrupt as long as I get a good lab and am satisfied with the results and treatment.
Clongen Labs or Igenex?
Posted by Tincup (Member # 5829) on :
Save your money! Save your sanity.
Wait till you SEE Dr. Jones!
Let HIM pick the labs and tests you will need. My bet is even if you run tests he will need more done- possibly thyroid, CBC, liver, etc.
So do us all a favor... and don't stick that poor kid again.
And tell your child for me...
That my name is Tincup and I said he shouldn't get stuck again!
As for the wife.. wait till you see Dr. Jones. He has been known to check moms and even grandmas too when there is a problem. It helps in the diagnostic process for some of the kids... in some cases.
My bet is if you raise the concern about your wife... he will send you to get it done or tell you how.
Dr. Jones does order tests for the kids. But he is an excellent diagnostician and can clinically diagnose (as the CDC says SHOULD be done)... better than anyone I know.
He will NOT withhold treatment for a sick child with any disease because of a negative tests if the history, symptoms, exposure, etc fit.
He is the best... the very best.
Not to worry. You will be in good hands.
And be sure to tell Dr. Jones Tincup loves him! If you don't mind?
PS.... Last I heard IGeneX was able to detect about 60 percent of those who have Lyme.. BUT.. I think that figure has gone up.
The reason they can detect it more often is because they test for the STARI strain and no one else does. Not all of us have the B. burgdorferi strain.
Hope that helps.
Posted by Kreynolds (Member # 15117) on :
Thanks Tincup....
Your help is very much appreciated!. We will tell the doc you said HI!
Posted by TerryK (Member # 8552) on :
I'm with TC - wait and let the doc decide.
As already mentioned, an abx challenge can be helpful. Your doctor may want to do that and if so, more cost, more sticks.
Terry
Posted by Kreynolds (Member # 15117) on :
I justed posted a new topic. We just got his Bartonella results and they came back positive. His titer level is 1.66.
How could he just have band 41, but Bartonella???
This is a sad day. Posted by lymeparfait (Member # 14268) on :
What are your sons symptoms?
My son had the same test results with Igenex...also the bartonella highly positive.
He had very few symptoms...but enough odd things for me to treat him for the lyme and definately the bartonella. Had him tested because I have lyme and his younger sister.
We focused on treating the bartonella first.
He never had a herx. I thought this was very odd, as my younger child and I do herx.
His other symptoms were mostly light neuro things...as well as orthostatic hypotention. Had a brain spect scan done...he has moderate hypoprofusion. So of course we were told to treat him with abx for the neuro lyme...but not sure if they helped. As again, he had no symptoms tht seem to be standard with lyme.
With the bart gone after 6 month of treatment...all other things are better. (did a retest with Igenex)
WE stopped treating him for the neuro lyme...as he is in college now. But am always watching him for any symptoms...he is still symptom free.
We now believe the hypoprofusion is mostly from candida, metals and die off. The lyme appears to be congenital and may just be lurking now... and in his dna, and therefore shows up, but is not affecting him yet.
If he wasn't away in college, I would work with him to detox, especially after taking all those abx. But sometimes a mother has to just let it go, until they want help. (with teenagers)
There are different philosophies of treatment if there are no symptoms, but positive Igenex tests. It's a hard call. But a trusted LLMD will help y ou decide what to do next.
I agree to wait to see Dr. J. But have his symptoms fully documented, by keeping a daily log and all info for the Dr. at your visit. Also take his temperature each day in the am to see if you get any trends in low temps and cyclical symptoms.
Your history is important too. There is usually a connection.
Hang in there...it's hard when it's your child, you will be helped!
lymeparfait
Posted by Abxnomore (Member # 18936) on :
He mentioned on a new post that his son is 2 and 1/2 years old. That's a difficult age to get any real info from a child about what they are feeling.
I'm not sure I would wait until September with a child that young with a developing brain. I would, of course, see Dr J as soon as he could but I would try to get some help in the interim.
Posted by lymemommy (Member # 12495) on :
Kreynolds,
I very much feel for you. Having one famiy member get sick with this dreaded illness always opens the big can of worms; what about the rest of my family???
As others above have said, hold off on further testing for now, wait until you see doctor. Because without a doubt, the doc is going to order yet more bloodwork, and there's no reason to have you family members get stuck any more than they need to.
As to testing pos on band 41 only, and pos for bart, that can indeed happen. In fact, that's how my testing came out.
Remember that the WB is test of your immune response, and that if the person being tested has not had enough time to develop antibodies (recent infection) or if their immune system is so beaten down that it isn't responding anymore (old infections)then the results will come up neg. Not to mention that the WB is not known for 100% accuracy....
I think the bigger questions are, is your child symptomatic? and is he/she seeing someone local until Sept? If not, pm me for contact info on NJ LLMD's who see kids.
Did your wife have a cd57 drawn? That, for me was the clincher. As I said above, I test neg for lyme, BUT my cd57 is a 27, and I have lots of symptoms, pos for 3 coinfections, plus I spent half my life living in your neck of the woods, and the other half down here at the NJ shore. (can we say "highly endemic???")
Anyway, try, not easy I know, but try to take a deep breath, and go one step at a time. You and your family will get through this, ok?
Take care, kp
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lymeorsomething: [QB] In my case, I'm consistently positive on 31 and 34 with usually one or two other bands mixed in...so in this way only Igenex would have picked them up...
31 and 34 may be markers for chronic (persistent) infection in some cases...
That's my point.
Posted by METALLlC BLUE (Member # 6628) on :
I would still run the Igenex WB. I know Dr. Jones will use Clongen and a few others, like Specialty Labs in CA. You might as well get this done, because whether he does or doesn't run it, it'll give you peace of mind, and it's only 200 dollars compared to, well.....you know the costs.
That's my opinion.
Posted by lymeparfait (Member # 14268) on :
The symptoms I am referring to are easy to see:
abnormal sweating (head and body wet) stomach problems reflux (throwing up) fevers and flu like palor abnormal anxiety if you are not near low body temp in am. rashes hemangeomas word dificulty reading problems ear ache hearing problems, allergies food and enviromnment. inattentiveness hyperactivity
These things can be noticed either by a parent, or sometimes the behavior is noticed by a babysitter or teacher who knows what is not the "norm" for this age. Parents get used to behaviors and cannot see it in their own child, especially if it is the first.
Keep a list of things like these with the dates. Would be extremely helpful to Dr. J.
Good Luck.
LP
Posted by METALLlC BLUE (Member # 6628) on :
Also if you would like patient reports on Dr. J, just e-mail me: [email protected] Posted by Kreynolds (Member # 15117) on :
Thanks to all that replied..
lymeparfait he has all the above mentioned, thanks for the list.
Unfortunately, my son only says few words. Incredibly he is very smart.
He can take things apart and put them back together.
The most common symptoms we see are speech delays, dyslexia, rashes, fevers, joint problems and frequent urination.
I feel that he is progressively getting worse nuerologically.
This is why we decided to get him tested.
He will be 3 in August and really cannot communicate and tell us whats wrong.
As parents we just know.... I don't know what to do my wife and I are so depressed.
Posted by METALLlC BLUE (Member # 6628) on :
This will work out man, I've seen so many young kids turn right around under the care of Dr. J. I'm very optimistic that he'll be resilient and drastically progress.
Posted by lymemommy (Member # 12495) on :
I have to respectfully disagree here.
Drawing blood from a 2 1/2 year old can be traumatic for both the child and the parent that has to hold him or her down. You do it only when you need to.
Treating lyme and coinfections will mean a lot of blood draws over the course of tx, both for diagnosis, and to ensure that the child's body is tolerating the abx.
I just don't think that it is necessary to retest over and over in hopes of a pos WB, when the clinical picture should be the determining factor. Not when the patient is a very young child.
kp
Posted by lymemommy (Member # 12495) on :
Sorry guys, my last post was out of sync (lots must have replied all at once).
I was responding to the post(s) the encouraged you to get more bloodwork.
As to kid symptoms, geneal has/had a very comprehensive list of symptoms, that you could run a search here for.
It is not always easy to see symptoms in very young children, and even in the best of circumstances they cannot readily communicate them to you. (for example, my son, at 5, did not know what a headache was, because before lyme, he had never had one, so he did not know the term. But when asked body part by body part what was hurting, sure enough, he had a headache.)
Because they cannot vebally communicate that they are not feeling well, kids will often act out behaviorally. Having a comprehensive list will help you piece it together, but the bottom line is that if you as a parent feel that something is wrong, then you should follow up on it.
kp
Posted by Kreynolds (Member # 15117) on :
METALLIC BLUE AND and Lymemommy:
Thanks for your help! I agree with you Lymemommy, I don't feel he needs to get tested again.
Obviously he has LD and Bartonella.... He will be going through enough of that when treatment comes.
My wife and I just cried hysterically...
I cannot imagine my son going through the same pain I am going through.
The worst part is he can't even communicate with us to tell us what bothers him.
I am too sick right now to deal with this... I am so happy to have a wonderful wife that has picked me up time and time again.
Now she has another part of her family falling to the grips of this disease.
I don't have the words to express how sad and disheartened we are.
I have know doubt Dr. J will do his magic. The only problem is the fact that I have been diagnosed for 2 years with no progress.
Actually getting worse with more and more coinfections popping up.
I can't see my son going through this... it hasn't hit home yet. As far as my wife having it, I strongly think she does.
But that will be another sad day......
Today we have been together for 4 years...
Thanks again to all.....
Posted by METALLlC BLUE (Member # 6628) on :
Waiting until Dr. Jones is perfectly fine as well. Either way, more testing will be done unfortunately. You'll have your answers in stone soon enough.
Posted by Kreynolds (Member # 15117) on :
Yes I know more testing will be done...
Do you think by seeing the Band 41 and the Positive Bartonella he will treat him on a clinical basis while waiting for the results???
Posted by METALLlC BLUE (Member # 6628) on :
Absolutely. He will begin treatment immediately based on the information available. The reason is simple. Treatment for Bartonella can easily overlap with treatment for Lyme in some cases. It's not an overstep to do that logically.
Posted by Kreynolds (Member # 15117) on :
Thats what I figured... We will just have to wait and see. It hasn't hit us yet....
Posted by lymemommy (Member # 12495) on :
I agree with Mike on that, tx for bart and lyme can and will overlap with lyme tx.
As to tx for kids, I can only speak from my own family's experience. My son became very sick from lyme at age 5, with cdc pos WB, over 20 em rashes, joint pain, elevated inflamation levels, and some pretty serious behavioral symptoms, (and this is not meant to scare you, not all kids have this symptom!!) he has absence seizures (right temporal lobe). What I'm trying to say, is that he was a pretty sick kid.
But now, almost 2 years later, his symptoms are down to occasional night sweats. His next EEG is in April, but we haven't seen any sign of seizures for a few months now.
Kids DO get better. They don't usually have all the nasty little dormant virus' or bad habits like smoking and drinking, that complicate things for adults, so they respond well to tx. Plus they follow tx recommendations, because their parents make sure they do, because they love them.
Many of us here have been where you are at now, with multiple family members ill. It is rough, but you'll get through it. (and when it truely sucks, there's always someone here to help you through.)
hug that baby, and your wife, and try to have faith that you will come through this whole. kp
ps, run a search on band 41 here, you will find that this is has been a subject of debate, particularly in regards to the 'does this mean I have lyme' question. I think that it is possible that your child has bart, but no lyme, based on input from others in those debates.
Also, as a person who had similar test results, I responded very well to abx, symptoms cleared right up, felt great. Unfortunately for me, my tummy couldn't handle the abx for long (c dif??). I am treating homeopathically now, with some tummy probs, but not as bad.
You might want to start with probiotics now, since it looks like abx is on your child's horizon.
Take care, kp
Posted by Lymetoo (Member # 743) on :
My heart goes out to you and your wife. Your baby is in good hands with YOU and with Dr J. Hugs to all of you.
and happy anniversary, for what it's worth. Sounds like your love is strong.
Posted by METALLlC BLUE (Member # 6628) on :
Kp, VSL#3 would probably clear those digestive issues right up. Pricey at first, but after 1 to two months you can cut it in half and then down to almost nothing. Just an idea.
-- Mike
Posted by Mo (Member # 2863) on :
yes, once my toddler quit smoking and drinking, her healing really took off!
my girl contracted lyme from me via breastmilk. the breastmilk tested positive and she has progressive symptoms after i had an EM rash and was diagnosed. following that, my daughter was treated very successfully for lyme and bartonella on a clinical basis.
doctor jones is very careful not to test the blood of small ones unless he believes it is necessary. it is very traumatic for toddlers to have blood drawn...and even the best labs can still have a considerable risk for "false negatives".
he based allot on clinical diagnosis and response to meds.
i agree totally with the others who say to get in with doc j and get his esteemed advise. yes, he may treat before requiring any more tests (tho i can't speak to that, obviously, but if he believes it is warranted, he will).
btw, my daughter has been quite well and off tbd treatment for four years. she was jones' patient. he is the best you can get, and children respond much better and faster than adults to treatment. don't worry. you are fortunate to have so much information and jones to see.
oh -- i would suggest getting all tests and medical records to doc j's office before your appt.
he will read all of it prior to your visit, which is truly amazing, and will help you all get the best picture upon the first visit.
good luck, mo
ps: the deal with the labs, as i know it, is igenex has the very best western blot, and pretty good babesia panels.
mdl used to have great pcr tests, but no longer do (llmd's are saying they are lucky to get one positive a year! -- this because the lab went robotic with this test) a positive pcr with mdl was/is proof positive of bb, mycoplasma, bartonella, or babesia - dna testing of blood and tissue. you used to have to run the panels frequently, so as to find the dna in a particular sample. it's just a **** poor test now as far as sensitivity.
clongen and specialty are being used by doc j at the moment because they are "pretty good". i do not have a clue how they compare to the efficacy of old mdl, or igenex. they run titers, wbs, antibodies and i'm not sure about their pcrs.
Posted by Kreynolds (Member # 15117) on :
quote:Originally posted by lymemommy: I think that it is possible that your child has bart, but no lyme, based on input from others in those debates.
I think it is possible, but its not what I believe.
I actually believe there is good chance I gave it to my wife and my wife gave it to my son.
I have no doubt my son has Lyme. The Bartonella just reassured the fact.
I can sit here and boggle my mind about how he got it, but I won't.
I am a firm believer that it can be passed sexually.
I appreciate all of the support during this tough time.
Posted by Keebler (Member # 12673) on :
- Are there any other reasons for his neurological decline, in addition to infections?
Does your child eat a lot of tuna fish or other fish that might be high in mercury?
Many toys and books ( and lunch boxes and back packs) have been found to contain lead and mercury. You can have those tested or check a safely list somewhere. Even if he does not put these (or his hands) into his mouth, there can be absorption through skin contact.
Any new carpet or furnishing (many are sprayed with flame retardants) and that can contribute to neurolgoical problems.
While it seem clear that some tick-borne diseases are certainly involved, while waiting to get in to see Dr. J, you might be able to sort through and be sure there are no other things contributing to the situation. Singleton's book and Burrascano's guideline also will have some good check lists for lightening the neuro burden.
This is a complex process but, bit by bit, it will become easier. Be sure to get on the list in cause of a cancellation at Dr. J's office.
Best of luck.
-
Posted by lymeparfait (Member # 14268) on :
I don't know what Dr. J thinks about the heavy metal issue with kids or how he treats. We never saw Dr. J. But I highly suspect your child may have issues with metals.
Mine do...and it was passed from me. Mine also have PCB's, possibly from microwaving their formula in plastic bottles!
Especially if you see neuro symptoms at such an early age, usually it is not just the lyme causing this. Don't expect it all to go away when the bart/lyme is addressed. Know that is phase one.
But somehow the metals and inherited toxins need to be addressed. The big thing now is to treat the bart/lyme and see how it goes. Then work up to the next phase of healing. Detox.
The ones who get better...do natural protocols for detox after the antibiotics have done their thing.
Big Tip:
Also, know that most likely your son is not getting the nutrition he needs. Lyme patients have malnutrition. We do not absorb nutrients correctly from food. So we need to supplement. Also some supplement pills are not absorbed either, even the ones we need. Leaky Gut...intestinal biofilms, etc.
Best bet is to get him on a liquid food support with his regular food. Talk to Dr. J. about this. This way you guarantee he will get what he needs to keep his immune system functioning and his body growing.
My teens did drink my smoothies...loaded with amino acids...protein...wheat germ...vitagreen mixes, EFSA's...electrolytes...and real fruit!
And they actually felt phenominal, could concentrate better and performed much better athletically when they drank them regularly. They actually admitted that I was right about something! Teenagers can drive you crazy...
Young children are resilient...they have a very strong immne system...give that system the help it needs and he will get better!
Be hopeful!
Posted by Kreynolds (Member # 15117) on :
No my son is a picky eater..... I would say out of everyone he is the least toxic.
He was bit by a tick 2 years ago. That's the reason for infection...
Either that or maybe I gave it to my wife and my wife gave it to him.
All I know is my son has LD with Bart, At 2 1/2 years old.
Below are the symptoms Lymeparfait listed above and he has every single one. abnormal sweating (head and body wet) stomach problems reflux (throwing up) fevers and flu like palor abnormal anxiety if you are not near low body temp in am. rashes hemangeomas word dificulty reading problems ear ache hearing problems, allergies food and enviromnment. inattentiveness hyperactivity
Posted by lymeparfait (Member # 14268) on :
Interesting that your son has all of those symptoms I listed...as they are some of the exact symptoms my child had either after birth and into her youth. Definatley all of them at 2 and 1/2 years old! I did not get them from a list...they are from my memory!
symptoms progresed into other things around 5th grade, mostly joint pain, and then another set at puberty, hormonal problems anxiety and depression.
so glad you know now and can stop the progression.
LP.
Posted by Kreynolds (Member # 15117) on :
He does have some more symptoms than that, but you hit a majority of them.
He does seem to have joint pain in the ankles...
I think he may have vision problems as well. He seems to squint a lot and zones out frequently.
Also instead of saying Bicycle he says cyclebike.
Thanks for the list it proves it even more!
Posted by swachsler (Member # 18155) on :
Hi Kreynolds,
It's so tough to be in this situation, this waiting game.
FWIW, my igenix tests in 10/07 showed IgM 41 IND, and IgG 34 IND, 39 IND, and 41 +. And I was ruled negative, even though I was massively symptomatic. So, you know the tests are flawed.
A year later, after I was off abx for several months, my IgM was 31 and 39 IND and 34 and 41 +, which was ruled positive. But the IgG showed 39 IND and 41++ and was ruled negative!
No matter, because the IgM and Plasmid/southern dot blot were positive, so I was positive.
But I was very suspicious of how many 41s I had all along that were either IND, +, or ++, so I agree with the consensus above to go through Igenix and/or wait for appt with LLMD before you tear your hair out.
At any rate, at least maybe you could start treatment for bart? Even when several infections are known or suspected, we don't always start treating all infections at once, so you could start with the one you know?...
Take care, Sharon
Posted by bettyg (Member # 6147) on :
hi roy,
here is geneal's KIDS LYME SYMPTOMS LIST she created!
CHILDREN'S LYME SYMPTOMS compiled by Geneal 6-07 From ``GENEAL'' June 2007
I have been doing some research regarding Lyme and signs/symptoms in small children.
I know many of you have small children that you may be concerned about. I believe my youngest child (4yrs old) may have gotten this disease from me.
For All Children
-dizziness -neck pain and stiffness in almost 90% -sore throats -swollen lymph nodes -excessive thirst, -Chest pains in at least 70%, some have palpatations -Sense of air hunger or shortness of breath, dry cough
-abdominal pain in about 50%, can mimic acute appendicitis -sometimes vomiting, heartburn -rashes that come and go, malar rashes, new psoriasis
-migratory arthralgias, joing pain in 50% to 100% -myalgias in over 80%, back ache, morning stiffness, pain at rest, muscle weakness
-frequent illnessses, dark circles under their eyes -intermittent red, hot pinnae of ears -sleep disturbance in over 80%
-Neurological symptoms are protean and can appear AT ANY TIME during the course of infection *hypersensitivity of skin, scalp and hair *Hypersensitivity to noise, light, smell *Alterations of taste *poor balance and coordination *Uncharacteristic behavior outbursts, mood disturbances, depression *social withdrawal *New onset phobias *Oppositional behaviors *Obsessive compulsive disorders *Deterioration in school performance in over 90% *Difficulty with concentration and attention in school with easily distractibility as well as "brain fog" in over 80% *New onset of ADD
*When measured with formal neuropsychiatric testing, children demonstrate defects in auditory and visual sequential processing
Less Commonly:
*Movement disorders-spaticity, ataxia, motor or vocal tics *Cranial neuropathies, e.g. Bell's Palsy or optic nerve neuritis *Peripheral neuropathies-numbness and tingling, distal parathesias, subtle weakness
Pre-Schoolers and toddlers
- Modd swings, sudden emotional outbursts - Irritabiity - Personality changes - Regression of motor and social skills (developmental milestones) - Changes in play behavior, tire easily, less active
- Trouble falling asleep, frequent awakenings - Nightmares, new phobias, recurrence of seperation anxiety - Diaper rash unresponsive to normal treatment - Frequent URI's, ear and throat infections, bronchitis, pneumonia
Congenital Lyme Disease
* Infants can be infected with Borrelia transpacentally in any stage of pregnancy and/or via mother's breast milk.
* The co-infections: Babesia, Bartonella, Mycoplasma and perhaps even the Ehrilichias can be transmitted transpacentally to the developing fetus.
* Gestational Borreliosis can be associated with repeated miscarriages, fetal death in utero, still births, hydrocephalus, cardiovascual anomalies,
intrauterine growth retardation, neonatal respiratory distress, and maternal toxemia of pregnancy.
* Infants either infected congenitally or from breast milk can have
- Floppiness with poor muscle tone - Irritability - Frequent fevers and illness early in life - Joint sensitivities and body pain - Skin sensitivity - Gastro esophageal reflux - Developmental delays -Learning disabilities and psychiatric problems
* Infants bitten very early in life will have many of the same symptoms - loss and decline in developmental milestones.
I found this to be a pretty inclusive list of signs/symptoms for small children, infants, and those suspected of congenital Lyme.
Sadly, my two children do exhibit many of these symptoms and both have positive bands for Lyme via Igenex diagnostic lab in PALO ALTO, CALIFORNIA. Geneal, 2007
Great List!
Posted by Kreynolds (Member # 15117) on :
Thanks for the list and the link bettyg!
To all those that replied above, thank you.
Posted by KS (Member # 12549) on :
Band 41 alone does not have any diagnostic meaning. There is a great deal of good scientific literature to support this.
I didn't read all of the posts so sorry if I'm making the wrong assumption but if your child isn't symptomatic, the majority of LLMDs would not recommend treating based on band 41 alone.
Both of my children tested positive for band 41 only and 3 different LLMDs said "treatment not necessary".
Posted by KS (Member # 12549) on :
Ugh, just read the entire thread....obviously there are some symptoms you are concerned about and I'm happy you have an appointment with Dr. J....
Sorry for all you are going thru...
Posted by Kreynolds (Member # 15117) on :
KS:
Did you happen to see that he also has Bartonella with Band 41??
It seems like it would be Lyme, but I will let the LLMD see him and see what he says.
Posted by Mo (Member # 2863) on :
my diagnosis was interesting and proved the theory of some of the great LLMD's that band 41 can indeed be the only band showing with active LD infection.
my WB (from IGENEX) while i was highly symptomatic, including many severe neuro symptoms) showed only band 41.
"luckily", i had had an EM rash documented with my tick bite, which is diagnostic of LD. that .. with the symptoms .. PLUS later i had pcrs (when MDL was viable) as proof positive that i was actively infected with borellia b., bart, and babesia. oh, and later still, mycoplasma.
the theory in some cases is that actually some of the most ill with present with only the 41 band, simply because their immune system is NOT responding to borellia b. in my case it may be because it was so overloaded with co-infections.
after i was treated by an LLMD for some months, i started showing more bands on my WB. i think i may have reached cdc positive at one point, but this was when i was partially treated and feeling somewhat better.
you must look at each case in an individualized manner, taking as much info as possible into account.
don't let a conclusion be drawn re: lyme just based on a sole 41 band reading on the WB.
mo
Posted by AthinLyne (Member # 17626) on :
As one who has seen a 2 1/2 yr old (who got it through breastmilk) decline very rapidly (all of a sudden), I would be terrified to wait until September. I know of one very good LLMD in NYC who treats children as well as their parents. Perhaps you could see this LLMD until you can see Dr. J. You know your child better than anyone. Go with your gut. I feel for you - hang in there, you're on the right path.
Posted by METALLlC BLUE (Member # 6628) on :
Athinlyne. Who else treats Children? PM?
Posted by Kreynolds (Member # 15117) on :
Athinlyne:
My son has an appointment with an LLMD Tuesday.
We are on a cancellation list for Dr. J so my son will be getting to a doc this Tuesday.
Posted by Kreynolds (Member # 15117) on :
Mo:
I forgot to mention that my son has had an EM rash.
Actually one of the many symptoms he has are rashes.
Posted by AthinLyne (Member # 17626) on :
Kreynolds, so good to hear your son is seeing someone. Guess I'm not telling you anything you don't already know...
Metallic Blue, your mailbox is full.
Posted by Kreynolds (Member # 15117) on :
Thanks AthinLyne!
Posted by METALLlC BLUE (Member # 6628) on :
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