My daughter has had some Lyme symptoms (fatigue, problems with comprehension, repeated throat and sinus infections, swollen glands, rashes, mood swings). Her pedetrician just sent me her Immunosciences results for Lyme Panel A. The Ignex Lyme tests have not come in yet so I don't know what her Western blot results are.
Her IgM is positive for unrelated spirochete, burgdorferi lysate, LFA antigen, variable major protein, borrelia sensu strict, garini decorin BP, Babesia Peptide, Bartonella Peptide and equivocal for outer surface protein-A, immunodominant protein. Her IGg for afzeli decorin BP and burgdorferi lysate were equivocal.
Her pedetrician doesn't have a clue how to read the results. Until I can get her to a LLD, I have some questions:
1. There is something in the labs notes about the reaction to unrelated spirochetes having to be negative. What is the significance of it being positive? Does this mean she has something other than Lyme?
2. What does it mean that almost all the IgM tests were positive, but the IGg tests were mainly negative?
3. Without the Western blot, is it a good bet she has tick borne illnesses?
How old is your daughter? How long has she been sick?
Below is a Lyme symptom list. You can have any combination of symptoms.
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
The IgM tests for a more recent infection and the IgG a longer-standing one. When her Western blot comes back, make sure you get a copy. I can help you interpret it if you like. I am not familiar with this lab's testing. Are her Babesiosis and Bartonella positive? I think most Lyme doctors use IgeneX Lab to test for co-infections.
It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Lyme needs continuous, aggressive treatment. Besides Lyme, Babesiosis, and Bartonella ticks can also transmit two types of Ehrlichiosis (HME & HGE), and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. She should be tested for these also.
The best and only Lyme pediatrician I know of is Dr. Charles Ray Jones in New Haven, CT. He sees patients from all over, and he has helped many children. I suggest calling his office for advice.
It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.
My daughter is 11. We just got her Western Blot from Igenx. IGM Single positive on bands 39 and 66. IGG double positive on band 30, single positive bands 41 and 66, indeterminate band 31. Negative titers for Babesia, Bartonella and Echrilosis.
I took her to a Lyme literate MD. He said she exhibits some tick disease symptoms (fatigue, moodiness, irratibility, sudden problems in school both socially and academically, swollen glands, chronic infections, rashes, mild droop in smile) and he is somewhat concerned about the neurological symptoms although it isn't one of the stronger cases he has seen. He recommends starting immediate treatment for Lyme and co-infections with Zitthromax and Mepron based mainly on the Immunosciences tests (which I don't understand).
Her pedetrician says that the tests are negative, her symptoms can be otherwise explained by things like starting a new harder school, hormone changes due to puberty and anemia and she shouldn't be treated.
Hi Meri. Below is the breakdown of the Western Blot bands:
9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients
The IgM tests for a more recent infection, the IgG a longer standing one. Band 41 is often the first to show, and hers is postive. Band 39 is a Lyme specific band, and hers is positive.
The CDC requires several bands to show for the test to be positive; however, many people who have Lyme do not have this many bands. Lyme doctors often look at which bands show, some are specific for Lyme.
I am not familiar with this lab's testing. If her Babesiosis is also positive, she needs to be treated. Babesiosis is caused by a protozoa and it is similar to malaria. It is often treated with Mepron and Zithromax.
Does she also have anemia?
I know it is hard to know what is right. Sadly, the majority of the medical community is dangerously ignorant about tick-borne illnesses. Many people here can attest to this. Your daughter's symtpoms can be attributed to tick-borne illnesses. I do not think all of her symptoms can be attributed to what the pediatrician says.
Thanks so much for your response.
She does have anemia. Her hemocrit is low, her iron serum is low her UBIC is high and her iron saturation is so low it says "alert". Why is anemia associated with?