philamom

When we first received a positive lyme result for our dd9 (60lbs) in July, she was placed on Zith 250mg a day. In Sept, an LLMD added daily Amoxicillin 500mg (2x day) and Tindamax 250mg (2x day) on Sat/Sun. This is when we saw the most notable improvements. Recently, we added Minocin for co-infections - Bartonella and Rocky Mountain Spotted Fever. The zith is a good start, but I think a combination of abx will be needed to eradicate the lyme, especially if it's chronic.

So, if by treating the lyme, do you hope to cure your thyroid problems? Or will you have to continue to treat? Im sorry, I don't know much about Thyroid disease.

Thank you! It looks like I have hyperthyroidism as well, and I've been having lots of heart racing/palpitations recently. My chest always feels like it's on fire. Anyone else dealing with thyroid issues with the Lyme? Next step is finding a doctor!

Just received my Igenex results: Positive. I'm sure after it sinks in there will be lots of questions.

My daughter's Bartonella Henslae was negative with Igenex. Her doctor felt she had it due to symptoms, so he re-tested with a different lab (Specialty Labs) and it came back positive.

Oh Vickie...I'm literally crying right now...Thank you for posting!

Hi Laure, I'm glad you're getting some answers! You might still want to consider seeing an llmd. In July, my daughter had a positive Igenex Western Blot IGM (many bands), but negative IGG and negative co-infection panel. It looked like a relatively new infection on paper. We went to an llmd who did further testing, she came back positive for Bartonella thru Specialty lab and positive for Rocky Mountain Spotted Fever thru Quest. Her treatment was changed. In my dd's case, the positive IGM Western Blot with Igenex is most likely showing a persisting, chronic infection (been around for a while). Hopefully, with the correct treatment the positive IGM will convert to IGG.

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Seems like herxing to me. I don't have any experience with Chlorella (we use burbur), but he might have an increase the first 2-5 days and then it will hopefully calm down some. See if he will drink lemon water throughout the day...it also helps with detox.

My dd had them on her thighs & buttocks a few years back. Her ped prescribed Retin A to put on every 5th one. It still took 6+ months to get rid of. The scars eventually went away.

Got it...thanks!

Is cd57 the name of the test for binding immune complexes? I plan on having it done thru Lab Corp. I did order the co-infection panel with Igenex along with the WB (should receive results next week). I will ask my doctor for the viral panel and I think I'll request Iron/Ferritin levels. I also remember reading somewhere that one of the cholesterol levels seems to be elevated in people who have lyme? So, I'll run that too. Thanks!

Elizabeth- So sorry to hear this! Did your son present physical symptoms of the infection or just behavioral symptoms?

Cobbie- This is a tough one. When my dd doesn't want to attend school, I usually see what she can tolerate. I start by taking an hour off of the end of the day. If she still is refusing, I move it up 2 hours or pick her up after lunch. I try and make staying home as boring as possible. It's so tough when they're not feeling right, especially with the meds.

I'm waiting for Igenex test results on myself. I recently had some labs done through Quest which showed some abnormalities. They are: TSH, 3rd Generation: .04 Low (Ref Range is 40-4.50) WBC: Low RBC: Low Absolute Neutrophils: Low Vitamin D, 25 OH Total: Low Myco P (IGG): 4.08 High MCH: High FSH: 122 High (Postmenopausal Range is 23-116) My doctor wants to run some additional Thyroid tests. Besides the Igenex WB, is there any other tests I could run that might indicate Lyme?

Could you add me to the pm list? Thanks a bunch!!

My dd(9) had c-diff in 2006, 2007, and this past April. Each time it presented differently. The first time she had severe, severe cramping with off/on diarrehia. She would sit on the toilet and beg for me to take her pain away. The second time there was frequent long skinny stools and minor complaints of stomach pain. We had no vomiting with the c-diff, that I recall.

When you sacrifice your self-esteem for an hour drop off play date. Recently, I arranged for my daughter to visit a family we haven't seen in some time. I picked up a small present for their child and put it in a gift bag we had around the house. On the way to the visit, my daughter noticed the gift bag and began crying because she couldn't part with it (hoarding). I said I would ask for the gift bag back. Well, after I exclaimed my lame excuse on why I needed the bag back, my daugter proceeded to declare loudly how much of a tight wad I was. She even had the audacity to say "Mom, haven't you ever heard of a dollar store!" She went on for five minutes about the gift bag. I was burning up inside, but kept my smiley grin and walked out the front door for my hour of free time! The entire drive home I couldn't stop chuckling!! Oh, and of course the present had to be something my daughter already owned.

I sent you a pm.

Jill- I totally agree. I wish my dd's pediatrician would have known to suggest testing with Igenex. Or better yet, I wish they would have had some recommendations 3+ years ago when she was bitten by a tick. All I got was "she looks fine to me". No testing, No referrals. I wish I could turn back time!! I wish Igenex was covered by insurance!! I wish I started treatment back then!! Ok...sorry for the rant! My point for the post was to note some of the symptoms, not to debate the screening process!

Someone on the PANDAS forum posted about this test. I think she had it done on her child...maybe she'll chime in. It was also mentioned at a lyme support group meeting I recently attended. NeuroScience (My Lyme Immune ID) Comprehensive Lyme Assessment (#5652) includes: Immune Tolerance Test, Cytokine Analysis, Western Blot Analysis www.neuroscienceinc.com/Lyme

Ifran- I would be more concerned with the IND 31. That's probably why Igenex recommended re-testing in 4 weeks or testing in another way. Here is some info I received from our llmd: There are eight known Bb genus specie specific KDA Western Blot antibodies (bands) 18,23,30,31,34,39,83 & 93. Only ONE of these Bb bands is needed to confirm that there is serological evidence of exposure to the Bb spirochete and can confirm a clinical diagnosis of Lyme disease. CDC WB IGM includes only two Bb specific antibodies (23,39) and excludes the other six antibodies. CDC IGG excludes bands 31,34,83. CDC wrongfully includes five non-specific cross reacting antibodies in its WB surveillance criteria: 28,41,45,58,66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Bb genus specific antibodies are considered.

PEDIATRIC TICK-BORNE DISEASES The following symptoms should alert the physician or mental health professional to screen for TBDs, especially if there is sudden onset following a flu-like illness: headaches gastrointestinal symptoms vomiting, diarrhea, heartburn numbness tingling blood in stool (mimics Chrons/colitis) increased separation anxiety school refusal mood swings, irritability, panic attacks OCD, personality change motor or vocal tics psychotic-like ideation & behavior (can be misdiagnosed as childhood schizophrenia) memory, concentration, learning problems ADD or ADHD regressive behaviors dizziness stiff neck, chest pain, backache palpitations Children with TBD's may manifest many of the same vague, varied, and confusing symptoms seen in adults. Sometimes changes in behavior provide the earliest clues to a pediatric tick-borne infection. Misinterpretation of such changes contributes to the failure of parents, teachers, and physicians to recognize and treat TBD's appropriately. This is especially tragic in that it may result in persistent infection which can seriously compromise a child's future. Professionals are seeing children who have been misdiagnosed for years, being treated for a "functional" or other physical illness. These diseases may affect the brain, eyes, joints, heart, stomach and other areas. Children are likely to present with changes in behavior regarding school performance or attendance, participation in activities and sleeping and eating patterns. Personality changes, learning problems and psychiatric symptoms are common. Children may exhibit dramatic mood changes with outbursts and tantrums, along with various manifestations of ADD or ADHD.

Yes, she was being treated with zithromax. Then the llmd added on Amox, and Tindamex on weekends. Next we will be adding Minocin.

Thank you! I ran out and purchased the Mucinex for kids--I always forget about this product. I will look into picking up some of the other supplements mentioned. Thanks again!!