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» LymeNet Flash » Questions and Discussion » Medical Questions » Wondering About my Son

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Author Topic: Wondering About my Son
JudyEric
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My son, Eric, had Lyme in the fall of 2002 (classic bulls-eye rash). He was treated with antibiotics and then we worked with an integrative doctor for about a year using homeopathic remedies. Eric became gluten intolerant following the antibiotic treatment and is presumed to have Celiac disease. He did well on a gluten free diet for about 3 years and then he started to have GI symptoms. He was found to have increased eosinophils in his blood and colon. We learned he had delayed food allergies to dairy, egg, soy, legumes, nuts, citrus and pineapple. After removing these foods from his diet he felt great (his eosinophil count was normal). Our nutritionist indicated that this would be a temporary removal but 1.5 years later he still can not tolerate these foods. He takes multivitamins, calcium, probiotics and digestive enzymes.

Over the past year or so he has developed some vocal tics, increased anxiety and obsessive-compulsive tendencies. I should also mention that he has a deformed barrel chest. When he started to play soccer in September after taking the summer off his feet and joints hurt. He was found to have a stress fracture and bone marrow edema in his heel (only one foot had the MRI). The orthopedic doctor screened him for RA and some other things including Lyme (Lyme IgG/IgM Ab 2.28 High : positive >1.09-LabCorp). Eric also complains of headaches.

I took Eric back to the integrative doctor that initially treated him and he ran some more tests. I started off using Lab Corp because that is the only lab our insurance will pay for (I know about IgeneX). Eric's Eosinophils are elevated again despite being on a very allergen free diet. The above mentioned test was rerun along with just the IgM Ab test. The IgM test was negative so I was told that this means he had Lyme in the past but he does not currently have Lyme. His IGG WB showed positive bands at 66,58,41,and 18 and is interpreted as negative. The IgM WB shows only 41 to be present. His CD57 test is 160.

Since I am now wondering if all of Eric's symptoms are related we are doing the Frye Test to look for co-infections. Does any one else have any ideas? We had just been taking Eric's symptoms one at a time but now it seems he has to many separate things to deal with and that there could be one underlying factor and maybe it is related to that tick bite in 2002.

Thank you for any ideas.

--Judy

Posts: 67 | From Maryland | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
savebabe
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You need to see a llmd, and get your child tested for co-infections. If other TBD's are missed, relapse is inevatible.

There are many mothers on this board who can give you the number to a good doc.

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valymemom
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Bartonella really supresses the immune system and may account for these allergies. This is becoming the most common co-infection and needs to be treated with different abx than those used for lyme.

So I would really recommend getting on different llmds wait lists.

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valymemom
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IgM converts to IgG in time and band 18 in and of itself is lyme specific. I think Dr. J. says if you have it..... you have borrelia.

My one son's llmd is now using the Frye co-infection testing.

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Carol in PA
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Lyme Disease Coinfections
http://www.lymeinfo.net/coinfections.html

Posts: 6947 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
JudyEric
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quote:
Originally posted by savebabe:
You need to see a llmd, and get your child tested for co-infections. If other TBD's are missed, relapse is inevatible.


We are doing the Frye Test and I thought that was the test for co-infections. Is there a different test I should request if the Frye test is negative?
Thanks.
--Judy

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JudyEric
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quote:
Originally posted by valymemom:
IgM converts to IgG in time and band 18 in and of itself is lyme specific. I think Dr. J. says if you have it..... you have borrelia.


Do you have a reference for this? I thought the IgM tests were the ones that show active Lyme and that IgG positive tests just show that you once had Lyme. Does it matter if the IgG test remain elevated? If they say these antibodies go down over time is it abnormal for them to remain elevated after 4 or 5 years?

I know that initially my son's doctor consulted with a well known LD so I felt confident in his treatment.

--Judy

[ 04. October 2007, 03:52 PM: Message edited by: JudyEric ]

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Lymetoo
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This is the link you need:

Western Blot explanation:
http://tinyurl.com/ffn3x

Read the entire thread, including replies, which contain vital information.

I'll be back in a minute...."refresh" your screen.

from the above link, written by Dr C of MO:

"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."

--------------

you said,
"His IGG WB showed positive bands at 66,58,41,and 18 and is interpreted as negative. The IgM WB shows only 41 to be present."

It's only interpreted as negative because the CDC says you have to have more positive bands or a specific combination of bands. Their guidelines are only for reporting purposes, not for diagnostic purposes.

Dr C of MO:

"The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."

---------------------
So even if your son has ONE of the above bands, he has Lyme. Nothing else can make those bands show up. [I am not a dr!]

How long was your son initially treated with antibiotics?

I agree with the others that he either has coinfections, or has not been adequately treated for the Lyme disease.

--------------------
--Lymetutu--
Opinions, not medical advice!

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JudyEric
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My son was initially treated with 1&1/2 tsp. Ceftin (250mg/5ml) 2 times/day for 28 days (he was 7 years old then). Our pediatrician initially only prescribed a 21 day treatment but I asked to extend it to 28 days after reading about Lyme. At the end of the 28 days my son was nauseous every night around 3 am and frequently slept on the bathroom floor. That was when we started working with our LLMD. We removed gluten from my son's diet and continued with homeopathic treatment for at least another year.

From what I have read above it seems that even an IgG positive WB should be treated. I had understood that a positive IgG WB only meant that you had Lyme in the past but that it was not still active. I will have to keep reading.

I hope that the Frye test is the correct one to run for coinfections in my son's case. Our LLMD told me some of my son's symptoms could be Bartonella but that there were a lot of species (I think that was the work he used)of Bartonella and most tests only look for 2 or 3 so it is easily missed. I thought actually looking at the blood for the critters might be a better way to go.

--Judy

Posts: 67 | From Maryland | Registered: Jun 2003  |  IP: Logged | Report this post to a Moderator
   

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