posted
Hi, I am trying to make sense of my childrens' Western Blots from Igenex. First, without getting into the entire story, I am a mom with lyme, ehrlichia, bartonella, and babesia. I have been in treatment for about 7 months. I have had lyme since I was 12 but just finally got diagnosed this past fall. I believe I gave all of my children lyme through delivery or breatfeeding.
I have had my children tested one at a time; the oldest was positive, the 2 middle children are technically negative, and the youngest I have not yet tested (although I am sure she will be positive or at least have positive bands).
My question is: My 2 middle children (ages 7 and 5) had their blood tests come back "negative" by Igenex. However, they each had one or two positive bands, plus several "INDs". I believe the + band was 41, which I believe is not specific to lyme (is this true?). I also have read over and over that "IND" means positive, even just one band.
My LLMD (who is wonderful and I love!) does not want them on antibiotics right now. Since they do not have "major" symptoms (they are not acutely ill) she wants them on lots of supplements (I won't list them).
Their past and present symptoms (which come and go) include chronic ear infections, light sensitivity, fatigue, chronic sinus infections. I thought that my LLMD would put them on abx with the results they got- but she would rather build up their immune systems at this point.
Is she right? So far I have trusted her word. I just wanted some feedback on whether or not this makes sense.
posted
Sounds like you're LLMD's approach is reasonable. Antibiotics, while not nearly as dangerous as Lyme, do hold the potential to cause problems; and since it seems that their immune systems are already working against the infection, beginning with a treatment that will help that process while not bearing the risks of abx sounds like a fine thing to do. That said, there are a few products, sold as supplements, though, that may have associated risks--so if you posted the names of them, it would be helpful.
As for INDs and Band 41--those are both indicative of Lyme. You should read Dr C.'s Western BLot interpretation at the top of the page.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"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." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
****************
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
Also, see Cheryl''s LYME INFO extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-10 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
Pronunciation of common co-infections from lymetoo/tutu 12-13-07
Ba BEE' see oh sis (Babesiosis) or commonly known as Ba BEE' sza (Babesia) bart un EL a (Bartonella) er LICK' ee oh sis (ehrlichiosis
___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)
___Muscle pains especially the calves; may be twitching and cramping also
___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)
___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.
___Tremors and/or muscle twitching
___Heart palpitations and strange chest pains
___Episodes of breathlessness
___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins
___Gastrointestinal symptoms, abdominal pain and acid reflux
___Shin bone pain and tenderness
Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever."
Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats).
Bartonella can also be transmitted by ticks that transmit Lyme Disease.
In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.
It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is "Bartonella-Like Organism" (BLO) that is yet to be fully identified.
While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families.
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julielynne4
Unregistered
posted
I appreciate your feedback. I am confused about band 41 - I have read over and over that it is not indicative of lyme...but then other places I read that it is. My LLMD believes it is not indicative of lyme, which surprised me. If it IS truly indicative of lyme, then my kids have a clear positive, which in my mind changes their treatment plan...
I am curious about the risks of supplements - so here are those that she wants my kids on (they have started only a day ago).
Vitamin C (she said they could have a lot of this; I am starting with 500mg) Fish Oil (nordic naturals childrens' DHA) Cat's Claw (one pill twice a day) S. Boulardi Transfer Factor Multi Vitamin Olive Leaf (haven't started this one)
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
julielynne your doctor has started an immune system
building blocks and natural protocols for Lyme. I
would expect to see them even herx from this
especially with the cats claw. Very powerful
antibiotic properties! But it may be worthwhile to
start at the beginning and get them built up for
the fight before hitting with the antibiotics.
-------------------- 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
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posted
You know what, I am so glad you wrote this post julielynne.
I have one son who has been bitten recently by a tick and I am completely paranoid about him developing symptoms. Almost probably to the part of neurotic. He did have a wierd headache the other day, "only when I shake my head, mommy" It resolved the next morning.
I decided that the best preventative thing I can do at this point is to keep his immune system as strong as I possibly can. Just like you LLMD has said to do. I switched his multivitamin and he takes a whole foods supplement. But I think he needs more. I probably will add in more vitamin C and I should be giving him a probiotic everyday anyway. Because of your post I think I will add in the fish oil dha.
How about Argentyn Liquid Silver? Can children take that?
Posts: 103 | From Northern VA | Registered: Apr 2009
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
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