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He said the IVIG would not produce false positive due to donor antibodies. If it were going to produce a false positive all of the bands would respond. They did write about this happening in Cure Unkown when the 'first' vaccine was available it has since been eliminated from the market. I'm not sure which vaccine you are referencing but in the information provided yesterday it said ABSOLUTELY NO LYME VACCINES!

 

I'll answer your other questions in a few minutes.... got to get my kids going for the morning.

 

-Wendy

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Now that I am remembering a few things.

 

He was worried more about immune suppression treatments that can often result in false negatives..... i.e. a year of Azithromycin, 8 weeks of Omnicef and 3 hdIVIGs for my son. He said my son was definitely in the cyst stage.

 

********YOU CAN ALSO BE ASYMPTOMATIC CARRIER OF LYME*********

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Now that I am remembering a few things.

 

He was worried more about immune suppression treatments that can often result in false negatives..... i.e. a year of Azithromycin, 8 weeks of Omnicef and 3 hdIVIGs for my son. He said my son was definitely in the cyst stage.

 

********YOU CAN ALSO BE ASYMPTOMATIC CARRIER OF LYME*********

Wendy-

How did he come to the conclusion that your son is in the cyst stage? Is it because of the length of time he's been on the abxs with cycles of herxng or is it because of the length of the illness?

Thank you -Melinda

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Lyme will present itself under stress especially after a pregnancy... My symptoms really increase after my twins stopped BFing and another pregnancy 5 months post the birth of the twins that ended in MC at 14 weeks. My symptoms continued to slowly ramp after that until I treated myself with a month long of azithromycin in Nov. 2009. The symptoms have slowly ramped again since last March.

 

Wow, if your kids are not 100% I'd run to a 'GOOD' LLMD for help. AND pursue LYME again for yourself via Igenex/co-infection testing. We did discuss EBV and I'd be asking myself what the underlying 'cause' is for your symptoms. Your history is very scary and really points to LYME. I'm not sure why you would hesitate. THAT BITE is indicative of Lyme and you know those types of bites are often confused with spider bites. Merca can do similar but if you tested positive for LYME I'd be leaning in that direction. LLMD are also versed at dealing with Staph infections....

 

Keep us posted... As you know, I've continued to run labs on all of my kids. Something is definitely working on my daughters immune system: Igg subclass 1 and 3 continue to drop as well as her RBC, many of her strep pneumo titers have gone from protective to deficient in the last six months. Although physically she appears to be doing much, much better on paper she looks worse. Her twin is improving both physically and on paper and he is becoming responsive in his strep pneumo titers was deficient in 13 of 14 but now responsive in 5 of 14. We took our Daughter off antibiotics in June and within 10 days she became ill. She had only had one cold since being on antibiotics over the last six months.

 

Hopefully my comments helped. I know you thought you are in good place with your kids but 100% remission is the goal and to never bare witness to this disease again 'whatever it is'.

 

-Wendy

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Length of treatment 'antibiotics'. He even felt the Omnicef had done its job. He said we might revisit Omnicef again or pulse antibiotic treatment. Seemed interested at rotating rifampin into the mix and debated the strength of the current dose of Azithromycin for his size. He was considering 375 m.g. for his weight of 53 pounds (with shoes) in addition to the cyst buster of 400 m.g.

 

-Wendy

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Sf Mom....way too hard to explain, and, would take too long, but, I do not think it is/was Lyme for myself or my kids. The LLMD doc I saw is a good one....the people ahead of me the first day I went, flew in from Texas....the people after me were from S. Carolina. Remember, I am in PA. He was recommended by the Lyme Association (or whatever it is called...I forget)

 

But, my older son needs a blood draw is Sept. to check his immune system and allergies...I have an Igenex box at home....I'll send in a sample from him just to be sure. They have been on anibiotics for 3 years.....Pen VK, Augmentin, and a bit of Zithromax and Biaxin in the mix. They never had a herx response, nor do they decline when put on Pen VK...so, IF it would be Lyme, I know it can't be going wild because of the amount/length of antibiotics they have been on. My older son is currently symptom free, my younger son has extremely mild stuff that doesn't interfere with his life and nobody would notice....not even you guys! :)

 

yI have a family history of tics, OCD, anxiety, autoimmune stuff and RF (Sydenham's chorea) I could go on......I will check out my older son's blood...we'll see. They have been checked about 3 times already for Lyme...always a negative result. I haven't done Igenex.

 

My Lyme tests are all negative now....never develped the IGG response that I should have if I had Lyme for that long.

Okay, going on too much. Bottom line, again, I don't think it is Lyme for us........but, I will check one more time!

 

Oh, this particular Lyme doc said Lyme tests, including Igenex, are useless if you are on antibiotics. So, such varied opinions amongs docs/people....just like PANDAS...how nice!

Edited by P.Mom
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How do you do the urine testing? Is that through a certain lab?

 

Also, did he happen to mention his thoughts on the CD57 for adults? Does he believe it's a useful tool in diagnosing Lyme?

 

When he says high immune complexes can give a false negative, does he mean through IGenex?

 

We are still waiting on our IGenex results. When I called, they said it could be up to three weeks. I was hoping for two :)

 

 

 

 

If the child does NOT make antibodies they treat it similarly with antibiotics. They can also do urine testing once a cyst buster (flagyl, tindomax, etc) is used and test for DNA of the bacteria (we will be doing this with our son).

 

 

CD57 is NOT a reliable test for children

 

 

Do high immune complexes 'typically' produce a false negative for LD? YES

 

 

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PMom... I've attached a story for you to read. http://truthaboutlymedisease.com/about.html I am glad you are considering or revisiting the Lyme Issue.

 

Make sure you read it in detail.

 

When I met with the doctor, I had somewhat of a "chip on my shoulder" sure he woud be just another dead end and I would be diagnosed with depression or some other obvious symptom. I told him my entire story and he sat there and listened intently like no other doctor had for over an hour and when I was finished speaking, I asked, "Do you think I am crazy?" He said, "No, I think you have one or more tick borne diseases". Someone believed me? A doctor actually believed me! It was a surreal feeling, I fell in love with him instantly (in a very platontic way of course!).

 

I asked about the possibility of my having viral issues too, he agreed that too was a possibility. They tested my blood for viruses and the results came back positive for 4 active viruses, HHV6, CMV, EBV & HSV. In fact my viral titers were so high, my LLMd said he had never seen titers that high in his career and he said he couldn't imagine all the pain I was suffering.

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CD 57 is a good indicator for adults. I believe he meant Igenex too when it came to testing for LD and elevated immune complexes.

 

You can get the urine test through Igenex but would need to have a cyst buster prescribed by a Dr. to apparently dump the DNA into the urine. I would think you need a good LLMD to help with potential protocol.

 

-Wendy

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Hi SF Mom...he did run a bazillion tests on me, too. I had never been pricked so much in my life....I thought I would run out of blood! :)

 

Anyway...the only active virus I had was EBV...and, I was tested for all the co-infections that come with Lyme....negative.

 

I'll read the story now..

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I do agree but I was thinking more of you and not her child. Her discovery of unresolved viruses only to realize the underlying issue was Lyme.

 

Anyway, I think I'm more interested to know if you are still positive for Lyme and not your kids.

 

-Wendy

 

 

 

 

 

 

Okay...now that sounds like Lyme to me....but, not what my kids experienced. No mention of sudden, explosive tics/OCD/ etc......just a slowly evolving disease of a very different character....no?

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