I am so glad that i found this forum, it has helped me so much.
Here is a little history on my now 6 yr old son.
In May 2008 i removed an engorged deer tick
June 2008 He started having congnitive problems, tingling fingers and feet. ELISA negative
Symptoms would get better but not go completely away.
I've have brought him to his doctor 5 times and each time he dismissed the lyme disease theory saying lyme doesn't have these symptoms
A month ago his symptoms came back worse than ever and I went to his doctor and insisted testing be done. He ordered another ELISA test and said he is confident if the test comes back negative it is not lyme. test negative.
August 2010 Changed doctors to a LLMD who ordered a western blot through QUest (because my insurance covers this testing)
I just got the results today verbally so forgive me if its not detailed enough
23+ 41+ 66+
Dr. said you need 5 bands to be CDC positive, can someone tell me what this means. Would 3 bands come back positive if it wasn't lyme?
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Is that on the IgM or IgG side? Either way, it sure looks like Lyme with the + on the 23 band. Your PCP is uneducated and doing the usual criminal blow-off of Lyme disease. To do that to a suffering 6 year old disgusts me. I hope your LLMD is able to help your son. Good luck.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
Seekhelp: im not sure if its IgM or IgG. I think its IgG because the doctor said he needs 5 bands to be CDC positive. Doesn't there only need to be 2 bands for CDC positive / IgM? Sorry if i get information wrong, I'm trying to understand all this as i go.
Dr. mentioned putting him on Amoxicillan for 30 days and more if needed, is this effective for treating all kinds of infections?
Posts: 28 | From nh | Registered: Jul 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
======================
LLMD stands for lyme literate MD. ILADS' link is below. ILADS is a group of doctors, researchers, advocates who have learned more about lyme than most doctors.
This explains WHY you need an ILADS-educated LLMD or LL ND (naturopathic doctor):
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
". . . If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . . ."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results. . . .
- Full article at link above, containing MUCH more detailed information.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
=======================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies
Connie Strasheim (Author), Maureen Mcshane M.D. (Foreword), Thirteen Lyme-Literate Doctors (Contributor) -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Amoxicillin is probably what the good Lyme doctors would use for Lyme in a child of 6, but they may also add Zithromax with the Amoxicillin to give double-coverage.
Since this happened recently, I would go after it with guns blazing, before it has a chance to settle deeper into the body. So if you can get him on Zith too, I would. The two antibiotics are thought to hit different forms of the bacteria.
It may upset his tummy, so take with food, if that is what you are instructed by pharmacy.
Also, probiotics will be important....get a good brand, and take 3 hours after each antibiotic dose. Don't take the probiotics at the same time as the antibiotic...the antibiotic will kill the probiotic.
Hope that helps! You'll want to treat sooner rather than later...the longer it goes untreated, the worse the whole situation becomes.
41 and 66 are not Lyme specific, but 23 is most likely Lyme specific, so I have heard. So I suppose there is a small probability of this being a false "positive"....but based on his symptom history, I highly doubt it's false positive, the band 23 with regards to Lyme. You need to treat this as if it's Lyme...and frankly, I would say 99.9% it is.
If that was an IgM, it would be CDC positive. It may have been an IgM....some doctors do not consider a positive IgM actually positive....if the IgG isn't also positive and the infection is over a month old. So that could be why he's telling you it's negative.
Or, as an IgG result, that is technically negative per CDC...but I wouldn't chance it, since many doctor say 23 is Lyme specific.
Oh....I just saw this was 2008 not 2010. Anyways, I would still treat as soon as you can...because the younger the child, the better the response to treatment.
You may want to consider seeing an LLMD that treats children. Amox alone may not be the best thing. So if you can get in with an LLMD, perhaps just wait to treat?
Good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
They are right, bring out all the guns. I am so sorry you were misinformed.
I would seek a LLMD to help you as there are many opportunistic organisms he may have come in contact with over the course of 2 years
that are well hidden by the stealth of the borrelia. Yet it most likely is there. He will need a lot more treatment than just amoxil for 30 days.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi Jeaton:
Our daughter went through something similar.
Ask your MD if 41 is positive (the flagella band)and its not lyme then the with the next most common spirochete bacteria with flagelis being syphilis is this what a six your old would have??
Then politely point out if 23 is lyme borriela specific why would his body produce this anti body if the underlying bacteris is not there.
Now unfortunately even if you convince him that maybe your son has lyme he will only prescribe the 10 to 21 days of doxy (maybe not doxy at 6).
This will not be enough and may make him worse actually. You will have to see a LLMD.
Also note since its Quest they don't even run bands 31 and 34, two lyme specific ones.
Good luck
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
| IP: Logged |
posted
God i wish i found this forum 2 years ago! the past couple years has been so stressful on my whole family. I've known there was something wrong with him and having doctors tell me he's fine.
Hoosiers51: I will ask if she can prescribe the Zithromax. I think she is just worried that if it's not lyme we will miss something.
I am 90% sure it is lyme, when his symptoms first began i didn't know about the disease. It was through research that i even thought that that was a possiblilty.
I know i should have seen a LLMD but she is actually a Nurse Practitioner who is lyme literate. She works with a LLMD in Massachusetts. She seems to know alot and is willing to do whatever it takes to help my son.
T9im: My sons only 6 so she won't put him on Doxy. and i will point out that my 6 year old most definately does not have syphilis. haha could you tell me alittle about your daughters lyme? did she improve with treatment?
Would anyone recommend more testing through IGenex? she ordered i think she said CD57. What is that test?
posted
His symptoms are definitely ones that can be caused by Lyme. The fact that they started shortly after a tick bite, and that he shows some evidence (the band 23+) of exposure to Lyme bacteria, would be more than enough to convince me.
Do not be dissuaded by all the doctors telling you it couldn't possibly be Lyme. They tell everyone that. If you have a bullseye rash and 10 positive bands, they say there's no Lyme in this state so it must be a false positive test.
What was difficult for me at first was to believe that almost all mainstream doctors could be so ignorant about a major, chronic disease that's been around for a long time.
However, if you watch the DVD "Under Our Skin" www.underourskin.com, and read the book "Cure Unknown" by Pamela Weintraub, you will understand why that is indeed the case. The book also chronicles two entire families who suffered with Lyme, including several children.
Please see an LLMD as soon as possible, and don't let anyone but an expert LLMD tell you that it isn't Lyme. They are the only ones who know enough to say.
It is typical of Lyme symptoms to come and go, so the fact that he has gotten worse and then better a few times makes it more likely to be Lyme, and that it has been active for the whole 2 years.
It's a horrible travesty of justice that so many "doctors" can turn away a suffering child with no help. They should all be ashamed of themselves.
It is awful that you didn't know two years ago, but some people on this board were born with Lyme and ill for decades before they figured it out, so he is still better off than them.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
| IP: Logged |
posted
My now 16 year old daughter had an engorged tick removed from her head at age 5. We live in an area where we don't even think of Lyme. Anyway fast forward 11 years. I now have a daughter who is bedbound most days. Can't go to school because of serious health issues.
Up until the time of her diagnosis she was at the pediatrician every 2-3 months with what I now know of Lyme sypmtom complaints.
Until her pediatrician sent her to a shrink becasuse this was all in her head and I fought back and knew it was something else, we accepted what they said. "It's growing pains, she's constipated, tired, depressed and on and on.
Thank God I didn't accept it and kept digging until I found out she had Lyme. She has a CDC + Lyme test as well as babesia, bartonella, erlichea, CPN and EBV.
These bugs had 11 years to grow, change and evade her immune system and have really done a number.
Please don't wait 11 years like I did before hitting the wall! She has lost so much of her life due to chronic illness.
If I knew then what I know now I would have done whatever it took to treat her for Lyme and co properly at the time of her first symptoms (age 5).
Please take him to an LLMD and get tested through IGeniX and get him in treatment.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic