These are disjointed notes from Congressman Chris Smith's Lyme forum, here in Monmouth Co., NJ, June 2nd. I am so sorry I couldn't take better notes, I am still dealing with Lyme brain. Plus, I have difficulty taking notes, because then I miss what is currently being said. It was very unfortunate that due to technical difficulties with the mics (and maybe some taking too much time) that of all people Dr. Burrascano was cut short. How very disappointing!
First up was the 10 yr. old, from Freehold, NJ, who won an award for his essay on Lyme. It was very uplifting. I believe Rick, from LymeLife sent the article that I saw, but it was just an excerpt.
Then Congressman Chris Smith told us about his efforts in getting some Lyme bills passed. I hope you aren't disappointed that I didn't note what was what. I do know that to get one thing through he put it through by itself and he told Frank Pallone (creep who is holding things up) if he didn't like the bill to rewrite it. He may have told others, too.
Then Pat Smith told us (hurriedly) all the wonderful things that LDA has been able to do it getting laws passed, giving grants, Columbia Univ. Lyme Research, and how you can get so much info at their site. (Frankly, I find it hard to navigate the site, but I am glad for all their work!)
Then an Army entomologist got up to speak. She studies all the ticks found on our NJ military bases, the soldiers have to send in all the ticks found on them. She told of the different types, the stages and a little about them. What she said about the deer tick is that they are hitchhikers, they hang on the tops weed blades. They cannot survive on a sunny lawn or in the dryer. That 1 in 5 in Monmouth Co. (my co.) carry Lyme.
Then Dr. Harris, the CEO of IgeneX spoke and put a lot of us to sleep, because he was dry and very technical. My LLMD, who was there, said it was very technical and geared toward drs. So, no notes from me.
Here are the patchy notes I took from Dr. Burrascano (he is so soft spoken that my hubby and I missed a lot, I guess we aren't the only ones):
Early Lyme needs abx treatment 4-6 wks at full dose (doxy 400mg). Late disseminated Lyme is 6 mos. - 1 yr. before treatment. Chronic Lyme Disease - over 1 yr. Lyme has a 4 wk. cycle (Babs has a 6 day cycle), if you keep a journal you should be able to see this. When he spread out his abx he had his worst herxes and then got better. (Mine are getting spread out now to every 3 wks. This time I won't panic when I get old symptoms back since hearing him say this.)
His thought on XMRV - is it a coinfection or is it an infection many of us have because our immune system is compromised.
Info on CLD (primarily neuro):
They are the sickest and rarely test pos. for Lyme. After treatment 36% will test pos. The goal is to balance the immune system and the Bb load, so the immune system can keep it in check.
Effects of Lyme (I think we all know these, but...) : Immune activation and suppression Neurotoxins Hormonal Imbalance Damage to organs, tissues, cells, DNA Nutrition Metabolism
How long to treat (he believes most need IV abx and a combo of abx)? Based on individual needs, response and may need to be months or yrs. Active infection may persist. Relapses occur, retreatment may be necessary. Abx may not cure, may need repeating, or open ended abx may be necessary.
Treat children the same. Teen hormones stir up Lyme and other bacteria, viruses, etc.
CD57 - normal >180, >120 unlikely to relapse
If neuro symptoms do not clear, there is the option to treat w/IVIG.
Progressively increase exercise as Lyme symptoms decrease. You need to exercise to get better, those who don't won't.
He named different ways that dehydration occurs for us and emphasized how we need to stay hydrated.
Next came questions, which were answered by the speaker who could best answer.
How long do ticks have to be attached, what is it about 24 hrs? (Pat Smith) It takes 24 hrs. for the Bb to work it's way up from the tick's stomach (I think she said stomach) to the mouth, BUT if they are already in the salivary glands you can get it with less time.
Don't know the question here, but Dr. Burrascano said that Bartonella effects the eyes more than Lyme (inflammation, Lyme - blurred vision).
Dr. B - They have found Bb in breast milk. They tested 4 women's breast milk, 2 PCR and 2 DNA and all were positive.
Other vectors for Lyme (Army ent.) - others carry Lyme, but have not been proven to transmit - yet.
Why isn't IgeneX test FDA approved? (Dr. Harris) Labs do not get FDA approval unless they plan to sell their tests to another lab.
Dr. B - BLO more likely than Lyme to cause seizures.
Would you treat if you only have Band 41? (Dr. Harris) The older you are the more likely you are to have Band 41, so he feels if you find it in a baby or young child that the dr. should be interested in treating.
What do you think about HBO treatment? (Dr. B) Believes it can be useful as adjunct, it makes abx more effective. It will not cure Lyme and has no effect on coinfections.
What does pos. IgM mean? (Dr. Harris) Active or chronic infection.
Can artemisinin alone treat Babs? (Dr. B) No and it can cause Babs to become resistant.
How long should a herx last? (Dr. B) Usually several days, but with Ketex it can be for weeks.
Autism and vaccines - Dr. B and Dr. Harris think they are a good thing, but that there will never be an effective Lyme vaccine. Dr. B thinks that if the immune system didn't develop effective abx against the Bb, then how it is going to with just a piece of it? Dr. Harris thinks it would only cause harmful effects. Autism from vaccines? - A theory Dr. B says they are looking into is, are the vaccines, in stimulating the immune system, stirring up a virus the child has already and causing the autism.
That's all I have, folks.
liz
PS I was speaking to a girl there and gave her info about LymeNet. If you are reading this I want to tell you that CanLyme.com has a lot of info including dr's articles and news.
Posts: 471 | From NJ | Registered: May 2009
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For the ones with a lot of adverse reports I would be more cautious with Lyme.
-------------------- 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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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks for sharing!
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Can someone please explain the thing about art mes in? Should it not br taken for babesia? I am so confused.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Thank you for posting the information.
-------------------- God Bless You! Everything..is just my opinion. Posts: 6638 | From Michigan | Registered: Jun 2001
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posted
Thanks great report. I think you did fine even with the fog. My only question is why won't nick harris go ahead and give his testing procedures to other labs? Wouldn't that help thousands of people in the long run. Isn't that what all this is about. Other labs finding lyme by using his testing method would produce more positives and put lyme more on the map. Makes me wonder ....hasn't he made enough pulling in 20/30 million a year.
Posts: 433 | From new york | Registered: Dec 2004
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posted
Any other lab that wanted to do this kind of testing could do it without any involvement from IGeneX. But you notice there aren't a lot of labs jumping into this work. And the reason is that they know the govt doesn't want a lot of positive tests and does everything it can to prevent cases from being reported and they will harrass any labs that make this a specialty.
So, cleo, you are not making much sense here. You are poorly informed on this subject.
Posts: 8430 | From Not available | Registered: Oct 2000
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
There are a lot of people who may not understand
that unless they have seen the movie UOS that has
enlighened me.
I had no idea they could patent and profit over
organisms that cause diseases in us.
So those that do want to look for alternative ways to work with them cannot use materials that are patented.
-------------------- 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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