colleenrn
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Posts posted by colleenrn
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Just received results from the neuroscience My Lyme Immune ID panel on my 5 year old. His western blot last month was negative for IgM bands, but positive for IgG bands 23, 30, 41.
His neuroscience labs read negative for ITT and negative for cytokines. The only thing that was not in normal range is in the cytokine test, OSPC and in the TNF-alpha category the OSPC was elevated.
Any thoughts would be greatly appreciated!
TIA.
Colleen
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You can be asymptomatic with both strep and mycoplasma pneumo. My niece has been on zithromax for a while and recently tested positive for Mycoplasma pneumo. They have switched to to clindamycin 3x/day at a pretty high dose.
My kids are usually asymptomatic with strep.
Colleen
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Did the bottle of keflex say 250mg/5ml or 125mg/5ml? The treatment dose is 25-50mg/kg/day (in divided doses).
Colleen
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Pulled three embedded ticks (deer tick nymphs) yesterday- one off my 5 year old with Lyme and two off my 9 year old (not diagnosed with Lyme yet...). I know some people give antibiotics prophylactically after pulling embedded ticks from endemic areas. Five year old on week 2 of doxy and still on ceftin. Nine year old takes daily zithromax. I am watching them closely fr any new symptoms or rashes, but wondering what to do.
TIA.
Colleen
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Based on his symptoms, they should have cultured him and run strep titers. Did the dr who ran the ASO diagnose him with rheumatic fever? What antibiotic is he being treated with right now? That would be my main concern right now- that the strep is being treated aggressively with the correct antibiotic. here are the AHA rheuamtic fever guidelines (also endorsed by AAP)
http://www.aafp.org/afp/2010/0201/p346.html
Colleen
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I am trying to understand why we are going to test for so many viruses in my son. My basic understanding is that the viruses stick to the biofilms?? If the tests show he has been exposed to viruses in the past, would he be treated with anti virals? If the viruses are not treated, will it impact Lyme treatment?
We are testing for parvovirus B19, EBV, and Herpes virus 6. We are also testing mycoplasma pneumo, chlamydia pneumo, immuno subclass IgG1,2,3,4, IgG and IgA quantitative, ASO, ADB.
Will the IgM be high if the virus is still active?
Thanks so much in advance.
Colleen
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My LLMD ordered a lot of tests on my 5 year old. One of them is MTHFR. My niece and nephew were both positive for this, so she thinks my son may be also.
The test she ordered is through Lab Corp. The order says MTHFR Thermolabile Variant, DNA Analysis (83891);routine.
Is this the correct test to order?
TIA!!
Colleen
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Has he ever been on Augmentin? There have been times that we add augmentin in with the zithromax for a few weeks, then stop the augmentin and continue along witht he zithromax. It could be herxing, but I would be suspicious that off of antibiotics he has contracted strep. You could culture him, but yo may get a false negative. Does adding ibuprofen, 2-3x/day help him at all?
Colleen
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It was my LLMD that said they see levels in the 20's with Babesia. They also said that babesia microtti is the strain most labs test for, but in their practice they see most of their Lyme patients with babesia duncani (I think it is WA-1). What else can cause a low CD57 (my son is 24)? Can ch
Colleen
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My 5 year old son just had his CD57 results return. His CD57 is 24. My LLMD said when it is in the 20's it can indicate babesia. Is this significant?
TIA.
Colleen
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In my hours/days/weeks of frantic research, I read somewhere that band 30 on the western blot can indicate neurological involvement. I may have read it on another Lyme forum (it was not latitudes), but now I cannot find that info anywhere.
My son's IgG was positive for bands 23, 30, 41 and nothing showed on IgM, but blood was drawn only 8 days after tick pulled off.
Does anyone have any info on band 30 and neurological symptoms?
TIA.
Colleen
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I would definitely treat for strep with a positive rapid test. Did they take two swabs and swab at the same time? If so, the swab sent for culture may not have "hit" the correct places in the throat- both tonsils and back of throat. The rapid would not be positive if it did not detect strep A. We have had this happen more than once. Some physicians will say a rapid positive with a negative culture means someone does not need to be treated for strep, or they are a "carrier"- not true. A child with PANDAS can't risk having any untreated strep. Will your dr treat?
Colleen
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Thanks for the info! I feel OK giving it for the next 14 days and then he will see Dr Beals again. I will see what else he could take besides doxy.
Colleen
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I am more confused than ever. I have a followup appointment for my son in two weeks, so I may give it to him just for the next two weeks. From what I have researched, two weeks should not cause discoloration.
Colleen
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Dr Beals wants to do a CD 57 blood test through Lab Corp. Has anyone had this done and was it helpful?
TIA!
Colleen
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Dr Beals just put my 5 1/2 year old on doxycycline 50mg twice per day. He and his assistant said that it is an "urban myth" that doxy causes teeth staining in children. When I researched it, I found most web sites said no doxy under 8 years old, but I found a recent study out of Tel Aviv that discredits that. Apparently in the 1950's tetracycline was staining kids teeth, so they lumped doxy in with that. Here is the link to the study. I am very curious if anyone has any info on it. I have not filled prescription yet as we just got it yesterday afternoon.
http://www.sepeap.org/archivos/pdf/10682.pdf
TIA.
Colleen
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Thanks- PM'd you back.
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Thanks MDmom- sent you message back.
Colleen
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We have an appt. this Thursday with Dr Beals for my son. Has anyone seen him? He works with Deborah McCabe in the Northern VA area. Does he do further testing with Igenex?
TIA.
Colleen
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Have you posted on the PANDAS forum? These behaviors and history can definitely be seen in children with PANDAS. How was PANDAS/PANS ruled out?
Colleen
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Yes! I ordered Cure Unknown from Amazon and it is on it's way. Can't come fast enough. I checked out every single Lyme book from my surrounding libraries. Some clearly believe and follow IDSA guidelines, other ILADS. I am going to watch Under Our Skin on Hulu. I am going to make myself watch it today. I am scared about what I am going to learn from it, but it is what it is.
Colleen
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That is great! Testing for mycoplasma and you got Zith!! What does did they give you and how much does your child weigh? Do you know about trying to adding ibuprofen to decrease inflammation of the basal ganglia.
Colleen
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If the culture comes back negative, the strep could be elsewhere. Any skin changes that could indicate a strep infection on skin? Any perianal irritation/redness could be perianal strep. Strep can hide in tonsils, adenoids, and sinuses. You can have strep in the gut.
The loud breathing is what I saw in 3 of my kids before removing tonsils and adenoids. Whenever they had any upper respiratory illness/colds they had loud breathing, snoring, and sometimes sleep apnea episodes. This can mean the strep is hiding in the adenoids which inflames them and cause these symptoms. Your dr may say if strep is in the adenoids then it would also be in the tonsils and culture positive, But that was not our experience. Once tonsils and adenoids were removed we saw improvement and no more loud snoring/breathing or apnea episodes.
Strep can go inside the cells (intracellular strep) which means certain antibiotics cannot reach the strep at all. If this is the case, azithromycin(Zithromax) is a much better choice. Omnicef is better at getting intracellualr strep than penicillins, but Zithromax is much better to get to it.
Mycoplasma pneumo can be in play also if your daughter just had pneumonia. You would want to test IgM and IgG for mycoplasma pneumo. Some PANDAS docs routinely check for it. Some say it can be carried just as strep can be carried. Macrolides are the treatment (Zithromax is a macrolide). I do not think Omnicef, which is a cephalosporin, would treat it.
Hang in there!
Colleen
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Laura-
Thanks for all the info. That is exactly how I am feeling right now. I feel I have fought this PANDAS battle so hard going back so many years and I am exhausted in every way. I will fight the Lyme battle if I need to and I am most definitely in panic mode right now.
One of the main questions that is really worrying me is, if the IgG is positive for 23,30,41 is there anyway in the world that can show up in only 8 days? Because if there is no chance of that, then he already had it. If he already had it and then has all these awful new symptoms after the last tick bite, what does that mean? He has an old and new infection? I am so confused.
Colleen
Autism & Lyme Link
in PANS / PANDAS (Lyme included)
Posted
Here are two links that talk about the connection.
http://www.medicalnewstoday.com/releases/113734.php
http://www.lymeinducedautism.com/