Before we were diagnosed with Lymes my son saw a neurologist. He called me today to say that he had the infectious disease doctor look at the Igenex results. He said the infectious disease doctor said the results are not always accurate. My son is now on 200 mg of Doxy a day and has been herxing. Would a person without lymes herx like that? He was positive in both tests for lyme. Why do the question it so?
Posted by cantgiveupyet (Member # 8165) on :
I herxed pretty bad off of 200mg doxy....so bad my LLMD had me go down to 100mg. In my opinion he wouldnt be herxing if he didnt have lyme. Think about it why would an antibiotic make him sick?
I was in denial myself about Lyme then I herxed and continue to herx off of doxy. It was proof enough for me!
Have you seen an LLMD??
Posted by concerned mother (Member # 8128) on :
yes we see a llmd in michigan here, and he said yes it is lyme. But the neurologist refuses to believe it! I just want to get my son feeling better and back to school someday. javascript:void(0) Eek!
Posted by cantgiveupyet (Member # 8165) on :
My neurosurgeon told me that the tests are very accurate.......he thought i had lupus. I have to say atleast he was thinking outside the box but he would not budge on his lyme view.
I hope you dont need this Dr help in getting your son better.....it might be tough to do.
Posted by riversinger (Member # 4851) on :
The neurologist is correct that the tests are often inaccurate. They often give false NEGATIVE results. However, with a well done Western Blot, such as from Igenex, showing the Lyme specific bands, it is rare to have a false positive.
The Elisa test does have false positives. Also, if the Western Blot does not report all the bands, it is theoretically possible to have a positive report that only includes nonspecific Lyme bands.
This is avoided on the Igenex test, as the doctor can see exactly what bands test positive, and make decisions based on that.
So, your neurologist has a point, he just doesn't have all the facts.
quote:Charles Ray Jones, M.D.
Addendum Regarding Lyme Serology
There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.
Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease.
CDC Western Blot IgM surveillance criteria includes only two burgdorferi genus species specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi antibodies.
CDC Western Blot IgG surveillance criteria includes 18, 23, 30, 37, 39 and 93 and excludes bands 31, 34 and 83.
It does not make sense to exclude any Borrelia burgdorferi genus species-specific antibodies in a Lyme Western Blot, and to include only two of these antibodies in IgM because all the antibodies in IgG were once IgM.
IgM converts to IgG in about two months unless there is a persisting infection driving a persisting IgM reaction. This is the case with any infection including a Borrelia burgdorferi induced Lyme disease.
The CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28, 41, 45, 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus species-specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus species specific antibodies.
This does not make sense.
The CDC recommends that the Lyme Western Blot be performed only if there is a positive or equivocal Lyme ELISA. In my practice of over 6000 children with Lyme disease, 30% with a CDC positive Lyme Western Blot have negative ELISA's. The Lyme ELISA is a poor screening test. An adequate screening test should have false positives, not false negatives.
Rev. 2/25/04
quote:Reasons Why a Seronegative Lyme Western Blot Test Result Might Occur
1) You may have a recent infection before antibody production begins. It takes two to six weeks to begin antibody production in a new infection.
2) The spirochete bacteria may be in a dormancy, or cyst phase, and not presenting antigens, so the body will not be stimulated to produce antibodies.
3) The spirochete is encapsulated by host tissue (i.e. lymphocytic cell walls). In this case, the body will not recognize the bacteria and produce antibodies.
4) The bacteria may be protected in parts of the body where the immune system will not easily find it or recognize it, such as tendons, cartilage, and other areas that have poor blood supply.
5) Tests based on a few strains of the bacteria are not sensitive to other strains. There are over 300 strains in the US, with tests for only a very few.
6) The spirochete is capable of changing its surface antigen proteins, continually hiding from the immune system and preventing formation of antibodies.
7) Recent antibiotic treatment may reduce immune system response.
8) Recent anti-inflammatory treatment may reduce immune system response.
9) If you have an infection with another tick-borne infection like Babesia or Anaplasma (Ehrlichia), in addition to Lyme disease, your immune system may be suppressed and you will not be able to make enough antibodies for the test to show positive.
10) There are other cause of immune suppression that may have a similiar result, such as certain viral infections, very young or old age, stress, steroid use, genetic immune issues, etc.
11) Not all Lyme lab tests are equally sensitive and accurate. A person can be negative at one lab and positive at another.
12) Lab tests are not standardized for late stage disease. Certain tests are more sensitive to late stage Lyme, others to early stage.
13) Most labs only report positive or negative results based on strict criteria from the Center for Disease Control and Prevention. This criteria was intended to be used for surveillance purposes, and may exclude some people with Lyme infection. Labs that report all bands on the Western Blot will give information beyond the more strict parameters given for surveillance. A test may be negative according to the CDC criteria, but still show significant antibody activity in reaction to Lyme disease, indicating a possible infection.
Posted by quaicheng (Member # 8392) on :
My Nuerologist was concerned about a birth mark on my arm, and my algebra grades 35 years ago in his misdiagnosis of me. Never once asked about any insect bites.
Do Nuerolgists actually *heal* anything?
I say keep your son away from him. He will get better un the path he is on.
quai
Posted by cantgiveupyet (Member # 8165) on :
i have to defend my neurologist he did order a lyme titer.......my duck didnt want to do it.....i so wish i would have listened to my gut back in September...after finding the canlyme site i was sure i had it.....well, cant think too much about that makes me depressed. My western blot ordered by the neurologist came back negative. In sept my symptoms were very little ...now are full blown ...
Posted by WildCondor (Member # 434) on :
Don't wate your time on Neurologists or Infectious Disease doctors, they are usually complete idiots when it comes to Lyme. If they acknowledge it, they will lose all their patients to LLMD's and have to admit that everything they have been doing their whole career was backwards, same goes for Rheumatologists. Anyway, hang in there and stick with your LLMD. Forget what the test results say, Lyme Disease is a CLINICAL DIAGNOSIS. The Doxycycline dose for an adult is 400-600 mg per day, just make sure he is on the right dose...not sure about his age. Make sure he is checked for co-infections! hang in there!!! Posted by Michelle M (Member # 7200) on :
quote:Originally posted by concerned mother: Before we were diagnosed with Lymes my son saw a neurologist. He called me today to say that he had the infectious disease doctor look at the Igenex results. He said the infectious disease doctor said the results are not always accurate. My son is now on 200 mg of Doxy a day and has been herxing. Would a person without lymes herx like that? He was positive in both tests for lyme. Why do the question it so?
Hi Concerned Mom.
Ya wanna lose that "s" at the end of Lyme?
There. Now, that's better!!!
It won't take you long in the frustration department to see why Lyme patients get disgusted with these doctors.
If you want a good laugh, use the search function for a great thread called "Are all neurologists goofy?"
They are typically very unimpressed with tests which prove something that they themselves did not come up with. I.E., since they don't know anything about Lyme or accurate testing for Lyme, they are not now going to start exclaiming, "Oh gee, sorry, turns out you knew more than WE did -- you do have Lyme after all --OOPS!"
NOT.
I think that's it in a nutshell.
The secretaries at my own neuro's office told me in hushed whispers, "He will NEVER admit he is wrong!" (When I faxed over my CDC positive IGeneX results, after his stoopid MS diagnosis).
IGeneX is one of the most respected tickborne disease labs in the world. I would simply tell my neurologist he obviously doesn't know much about Lyme disease if he doesn't know THAT.
Michelle
[ 21. December 2005, 07:55 AM: Message edited by: Michelle M ]
Posted by Michelle M (Member # 7200) on :
Oh yeah.
One other thing.
Although the CDC requires 5 out of 10 bands to be declared "CDC positive" on IgG, research shows that even the appearance of just TWO of the bands has a specificity of 93-96% and a sensitivity of 100% for detecting Lyme disease on a Western Blot. (from Engstrom, 1995) (thanks, Lyme Times.)
I.e., ya got even TWO bands, there ain't no such thing as a false positive.
Michelle
Posted by Monica (Member # 224) on :
You have learned a valuable lesson the hard way.
Stay away from neurologists and infectious disease doctors.
Posted by pab (Member # 904) on :
We have a great LLMD and neurosurgeon. My kids have pseudo-tumor cerebri (intracranial hypertension) and are seen by a neurosurgeon.
Although this neurosurgeon can't treat the Lyme, he acknowledges it and has referred us to other specialists.
He is the 1st doctor that believed my son was ill and recommended he be tested for Lyme. Trying to find a doctor to test for Lyme was impossible so we took the kids to Dr. J in CT in 2001.
Posted by GreanPea (Member # 3411) on :
Neurologists specialize in neurological problems, not lyme.
We have a wonderful LLMD who is very, very pleased that we are taking our 6 yr old to a neurologist to sort out his neuro problems, even though it's starting to look more and more like he has lyme and coinfections.
I have come to learn that it really doesn't matter what doctors believe. You need to be your own, or your child's advocate and get what you can out of every doctor visit.
IMO it's as simple as this: you either trust a doctor or you don't.
If you trust the doctor and his or her methods, then continue the relationship. If not, then don't and move on.
Here's what really taught us this lesson, and good:
My husband was presenting with what looked like a classic lyme sypmtom of peripheral neuropathy. Now, I had been cautioned by many to stay away from Johns Hopkins. But, even after testing glaringly positive with lyme and beginning treatment, the LLMD agreed that hubby should see a neurologist about the numbness he was experiencing in his feet and legs and the severe back pain.
Long story-short, he ended up with a tumor in his spinal column that would have soon put him in a wheelchair had it not been removed. The tumor was a slow-growing one that had just about flattened his spinal cord. Once removed, ALL of his symptoms all but disappeared. The back pain was GONE and the numbness is about 90% 8 months after the surgery.
The neurologists, yes neurologists at Johns Hopkins... yes, folks, THE Johns Hopkins, identified and removed this tumor. The whole process from initial visit to end surgery was perfect. We had not one complaint.
By the way, the neurologists' first comment after spending 45 minutes checking hubby out was "well, one of the possible causes is something infectious, and given your wife's history, lyme would be top on our list... but first we have to rule out a mass."
I would NOT just AVOID a certain type of doctor, or a certain institutions because of one or two persons' bad experiences. Each doctor, just like each lymie, is different. Some are very knowledgeable and have good advice and some are simply not and don't, even if well-meaning.
Just my OPINION.
Hope this helps.
Pea Posted by concerned mother (Member # 8128) on :
Thanks everyone! I will ignore the neurologist and stick with the lyme doc.
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