Since I can’t use doctors names I will try to give a few hints that may help with recognition of the speakers.
The first 3 or 4 speakers were physicians talking about the ILADS training program. One was a lady physician from Northern Virginia that works with an LLMD who has published about the connection between CFS and lyme.
The second half of the program was from other well known LLMD’s. They each had maybe 15 or 20 minutes and some answered a couple of questions from the live stream chat during their interviews.
I did not take many notes, so do not remember exactly in what order the different speakers appeared. I got distracted chatting so may have missed some of the comments from the various speakers.
There was one speaker from the Midwest discussing mold.
Dr J – children’s doc – spoke. Mainly was trying to recruit other docs into the physician training program.
A lady disability lawyer from Boston spoke. Audio and video not very good during this presentation.
One comment she did make is that a statement from a person’s LLMD explaining why they are an expert in tickborne illnesses – for example listing number of years and number of tickborne patients treated – could be beneficial to a person’s claim.
Dr B talked about neuropsych issues.
Dr S from Northern Virginia (the first lady speaker practices with him) discussed hyperbaric. Audio was not very good during this presentation and slides not really visible either.
Eva Sapi briefly discussed biofilms. Also was very excited that the new microscope that lyme advocates raised the funds for will arrive in a week or so I think it was.
The PhD lady who works with Galaxy Lab talked about bartonella. According to her there are at least 28 species and 17 of those are zoonotic – means they can pass from animals to humans.
The PhD lady who is studying anti neuronal antibodies and PANDAS spoke. She also did or is doing a study with B.F. at Columbia that includes tickborne patients –
not exactly sure if the study is complete. Her new lab is open and they are working on some new tests.
She briefly answered my question as to whether elevated anti neuronal antibodies could cause seizures or just movement disorders.
The answer was a qualified yes – would depend on which antibodies were elevated but could possibly be a cause of seizures.
I still need to get the paperwork done so Steve’s brain tissue can be tested with her lab.
This lady is brilliant. Saw her speak at the LDA conference last summer as well. It is my understanding that if her lab finds elevated anti neuronal antibodies that patients can qualify for IV IGg –
even if immune subclass testing is normal and muscle biopsies are normal as well. Link to the lab below.
The Dr B spoke – talked about his history in working with tickborne diseases and how every year it seems like there is a major new discovery in regards to either treatment or diagnosis.
He said it was validating that what he used to call BLO has been proven to be bartonella in tickborne patients.
One interesting fact he shared is that 38 percent of the samples tested thru Advanced Labs are positive for lyme.
If I understood correctly any LLMD who has a patient who tests CDC positive for lyme using Western Blot testing can get free testing from Advanced Labs – to be used for research purposes.
CORRECTION -- Someone sent me an email and said the free testing is for a study which probably has limited enrollment. Contact the lab for details.
Also one very interesting recent discovery has been that many patients who are wired and hyper may actually be hypoglycemic.
To correct that he suggests 1 tablespoon of coconut oil every 8 hours with one dose right before bedtime.
I thought Dr B was right on target when he spoke about what direction he thought future tickborne research needs to go in.
He briefly mentioned the 4 prior published studies using antibiotics and mentioned that even in those trials there was no good way to know if the patients had coinfections that could have influenced the outcome of the studies.
He feels that more animal research needs to be done – using rats or maybe hamsters or pigs I believe he said – but of course do not keep the research under cover for 10 years as was done with the rhesus monkey study.
He feels that animal studies should be done with animals only infected with lyme and then with animals only infected with the various coinfections such as babesia and bartonella
and then studies with animals infected with different combos of multiple pathogens.
Dr L spoke about his former patient Vicki Logan and the importance of case studies.
I think that was all, but I could be missing someone.
This is the first time I have seen one of these conferences on the internet as my old PC was dialup and did not even have enough memory to watch you tube videos. So I can’t compare the video to prior events.
Bea Seibert
Just realized I missed one speaker. Dana from the movie Under Our Skin gave an update on how she is doing.
surprise
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posted
Bea, thank you so much! I really appreciate all you do--
Moleculera Lab test- we had this test done for my daughter, who has/ had PANS/ PANDAS
while Dr. M. C. was doing the test through a university, before opening this new lab. We came back elevated, very clear,
it's a wonderful test with explanations: however; it does NOT mean insurance companies will cover the cost of IVIG based on the results.
Believe me, I tried, and many of the PANS moms are still trying with various insurance companies. Sometimes it can be covered under encephalitis (sp.?)
The IVIG needed is high dose- we did 2- very costly.
Thanks again, the hypoglycemic part and coconut oil is something I am going to try.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Bea, I was aware you were on the chat! Thx for these notes! I couldn't hear very well on my computer.
A note - it was Dana who was interviewed from the film. She's now a Lyme educator and her site is www.lymelesslivemore.com
Q re bart being zoonotic - does anyone know the extent of that? We know about transmission from cats.
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posted
Surprise -- Thanks for the clarification. I was just quoting what the researcher told me personally.
Have you requested a copy of the insurance company guidelines for IV IG? If they denied coverage they have to provide you with a copy of the guidelines if you request it.
The reason I ask is because BCBS tried to deny hubby's brain SPECT scan because he did not have a documented seizure disorder etc etc Anyway when we got the actual guidelines there were I think 7 reasons listed that would require them to cover the SPECT scan. I think the last one on the list was brain inflammation or maybe it said encephalitis -- can't remember the exact wording.
Anyway when we wrote a letter detailing hubby's symptoms that were probably due to brain inflammation (we wrote the letter ourselves and had the neurologist print it on their letterhead and sign it) the insurance covered the test.
Bea Seibert
P.S. Did the IVIG help your child? Or would it require more than the 2 treatments to really make a difference?
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Robin -- I will make that correction. Thanks. Hate to admit it, but I have never seen Under Our Skin. I really need to watch that movie.
I think Dr B the vet with Galaxy Labs published a journal article a couple of years ago arguing that bart could potentially be transmitted by ticks, but do not think it has been definitely proven.
They know bart can be spread by lice and fleas, but I think more research is needed on ticks.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Bea - the film is good! You should watch! I think you can watch it for free at www.hulu.com. It's actually been shown a couple times now on public access TV here.
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posted
Robin -- I do not have a working TV but do need to check out hulu.com
Bea Seibert
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surprise
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Bea, HD-IVIG working is a big question. HD/ High Dose is used to stop the auto-immune component/ reset the immune system.
There is no set number of HD IVIG. One Dr. will say 1 and done, another says more needed depending on how long condition untreated.
If unknown infections are underneath, it seems to not have a lasting affect. As more and more are finding Lyme and co-infections, including Mycoplasma,
more are thus finding treatment is a long process, with many ups and downs. We did our HD IVIG's before finding Lyme and Bart.
My daughter is complicated. The 2nd HD IVIG was a miracle- and then it wore off 6-8 weeks later, but there are a few 'things' that have never come back, and it's been 3 years,
however we went to full treatment modes after that, so I can never be sure which intervention to give credit, hopefully all contributed somehow.
With Chorea, I would definitely go for HD- IVIG.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Surprise -- Thanks for the update. Others may find the info useful.
From what I have heard IVIG used for lyme neuropathy is at best 50 percent effective. But then again the 2 primary neurologists who use that treatment neither are well versed in coinfections, especially babesia in my opinion. And also from what other patients have reported.
Hubby saw both of the docs -- but years apart. And he never qualified for IVIG as his immune subclasses were all within normal limits and he did not have peripheral neuropathy.
Bea Seibert
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surprise
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And, IVIG is a pooled blood product. I don't know what to say further on that part, so I won't comment.
Our immune subclasses were always in normal range, too, and insurance companies, from what I've seen, have a hard time approving coverage with normal range subclasses.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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lymednva
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Shoot. I missed the mold discussion. I'm dealing with that at the moment. I would have liked to have seen it.
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kam
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Thank you. HOping to come back and read what you wrote a little at a time when health allows.
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kam
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I have always admired LLMD's. I think you need to be a bit of a detective....no a lot like a detective and have good problem solving skills.
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Kam -- I agree. I still remember one physician hubby went to called the Dr B "The great observer." And we had another doc a long time ago tell him he needed to find a curious neurologist -- we did not have too much luck with that unfortunately.
Bea Seibert
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Rumigirl
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OMG, Bea, thank you!
I was very distressed to realize that, although I marked the Livestream down in my calendar, I totally missed it!! I did horribly over the weekend and then completely forgot.
I was sad that they didn't do the whole livestream as before as it was. I guess it had to come to an end eventually, although who knows if this is how it goes from now on or not.
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Rumigirl
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OMG, Bea, thank you!
I was very distressed to realize that, although I marked the Livestream down in my calendar, I totally missed it!! I did horribly over the weekend and then completely forgot.
I was sad that they didn't do the whole livestream as before as it was. I guess it had to come to an end eventually, although who knows if this is how it goes from now on or not.
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TF
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I caught the end of Dr. Burrascano's interview.
He said two other things that people might be interested in.
1. He said that if a person gets rid of lyme disease and doesn't get it back in 3 years, they will NOT get it back.
2. When asked if, then, he is saying that lyme can be cured, he said something like, "What is meant by that question? That isn't the right question." Then, he went on to say that we know that people who get rid of cancer still have cancer cells in their bodies, and that this is true of many other diseases also, probably including lyme disease.
It is a matter of the immune system being able to handle the disease.
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To the right of the colored blocks which says offline, click on Videos and then click on the picture to watch the replay.
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CherylSue
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My question is how do you know you got "rid" of Lyme Disease and coinfections?
Posts: 1954 | From Illinois | Registered: Aug 2007
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TF
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I knew I was rid of lyme and cos when I felt 100% like a normal person. All of my symptoms were gone.
If you stay on antibiotics for 2 months past the symptom-free point, then you can stop meds per Burrascano.
I became symptom-free in the fall. Winter was approaching. So, my lyme doc required me to stay on meds until spring--5 more months past my symptom free point.
I was a totally normal person for those 5 months. And, I was still normal after I stopped medications complete. That's how you know you are rid of lyme disease and its coinfections.
I finished my lyme treatment 8 1/2 years ago and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease.
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CherylSue
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I've been treating 6 years, and I'm still not symptom free, although I'm much improved. I've seen 3 LLMD's and will soon see a 4th. Will I ever be off abx???
Posts: 1954 | From Illinois | Registered: Aug 2007
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CherylSue -- I don't think anyone can answer your question. I would say that in many people getting rid of the coinfections is the key to a full recovery. Best wishes with the new doc.
Bea Seibert
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CherylSue
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Thanks, Bea. I should be grateful for the strides I have made. I just want the full recovery and hopefully, I am close to it. I'm looking forward to seeing this new doc.
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CherylSue
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Thanks, Bea. I should be grateful for the strides I have made. I just want the full recovery and hopefully, I am close to it. I'm looking forward to seeing this new doc.
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