Saw Dr. H.on live stream: Amazing presentation! NY is so lucky to have Congressman Chris Gibson. Posted by AuntyLynn (Member # 35938) on :
Dr. H "kicked butt" didn't he? I only caught the last 15 minutes or so, but he has some wonderful insights as to coinfections, and potential treatment studies!
I really HOPE that ILADS will upload this presentation on their website! I know a couple of people who definitely need to see it.
Posted by AuntyLynn (Member # 35938) on :
The conference has broken for lunch, but is scheduled to return at 1:45 PM EDT.
Can't wait!!!
Posted by poppy (Member # 5355) on :
The infectious disease doctor, who identified himself as "one of the bad guys" made some comments after Dr. H's presentation.
He said he had picked up a babesia case recently. One case? Big deal. How many did he miss? And how does he explain the bad outcomes after the standard treatment? Easy, just call it something else or post lyme syndrome which doesn't need anymore treatment.
Posted by unsure445 (Member # 15962) on :
And the case was "As far north as Schenectady". What a hoot!!!!
Posted by AuntyLynn (Member # 35938) on :
Dr. C starting NOW!!! Posted by AuntyLynn (Member # 35938) on :
Dr. C is up NOW!!
Posted by AuntyLynn (Member # 35938) on :
(OOPS, I had an overload signal - thought that didn't post)
Yeah that "bad guy" is NOW an Insurance Rep!
Dr. C talking about "plenty of evidence of CHRONIC Lyme!"
Posted by Catgirl (Member # 31149) on :
For those who missed it, I took some notes:
Dr. H. presented a map of Multi Systemic Infectious Disease Syndrome (MSIDS)--Chronic Lyme is MSIDS. It covers 15 different areas (I tried to write down as many as I could, but here is what I got):
"One of the keys to getting better is to shut down the inflammatory system."
"Mercury will mimic every lyme symptom and is responsible for over 800 auto immune disorders."
"Lyme affects pituitary growth hormone."
"No sleep causes over stimulation of cytokines. you can't shut down inflammation if the patient can't get to sleep."
Doc H. suggested we need a multi country NIH type center. He said that lyme has already spread world wide--it is a public health crisis. He suggested development of a Chronic Disease Center of Excellence.
"We need a Framingham type study model to evaluate. Set up think tanks. Have different experts discuss implications. Set up an international tick borne committee."
"At congressional level, we need a Best Medical Judgement Bill: Docs currently won't deal with lyme because they are worried about being shut down or losing their licenses (big applause from audience)."
"Compassion is the answer. We must care deeply about this country and its future. Health care costs are soaring. We cannot afford to ignore it. Let's work together."
Dr. H. got a standing ovation.
Posted by AuntyLynn (Member # 35938) on :
WOW!! Dr. L (sp?) topped off this conference with a KILLER presentation!!!
Too bad the feed just went down before the Congressman was finished with his summary!
[ 05-21-2012, 04:16 PM: Message edited by: Lymetoo ]
Posted by poppy (Member # 5355) on :
Pat Smith says the IDSA guidelines will not be removed. The govt body that oversees this told the Congressmen who wrote on our behalf that they had been sufficiently reviewed during the CT AG investigation! Bad news.
You would think that any guideline with this much controversy would make them worried about its veracity. Apparently not. If this keeps up the way it has gone for years, there are going to be a lot more government haters around. And they will deserve it. How can people believe anything the govt health people say when they have deliberately mishandled lyme and hurt so many people.
Posted by Lymedin2010 (Member # 34322) on :
How can we get a copy of this or view it in its entirety?
Posted by AuntyLynn (Member # 35938) on :
Poppy - I caught that - and it is OUTRAGEOUS!! The CT AG should never have SETTLED with those B*st*rds!!!
Posted by Lymetoo (Member # 743) on :
Dr C of NY??
Who's speaking now?
Posted by Lymetoo (Member # 743) on :
OOPS.. are They coming back for more??
Posted by AuntyLynn (Member # 35938) on :
Did you also catch Dr L's comments about Vicky Logan's lawsuit against Empire Blue Cross/Blue Shield (for their treatment refusal), that
Raymond Datweiller
(who is/was a member of the IDSA treatment recommendations committee) had SERVED AS AN EXPERT WITNESS for BC/BS??
Disgusting!
The CT AG said that ALL 20 members of the IDSA committee had "conflict of interest" issues, yet the National Guidelines Clearinghouse and HRQ (under HHS) do NOT intend to REMOVE the IDSA Guidelines! "Go Figure!!"
** edited name of LLMD **
[ 05-21-2012, 04:34 PM: Message edited by: Lymetoo ]
Posted by AuntyLynn (Member # 35938) on :
I just clicked on the FIRST video with today's date - and it is beginning to replay.
Is that what you're watching tutu?
Posted by AuntyLynn (Member # 35938) on :
Catgirl - Thanks!!
I took notes too - 6-1/2 pages of 'em!
I just restarted the beginning video (there are icons at the bottom of the page), and she announced they WILL be posting all of the conference videos.
Posted by Lymetoo (Member # 743) on :
No, I missed all of it. Just caught the last speaker for a few minutes.
Who was that?
Posted by AuntyLynn (Member # 35938) on :
Now Tutu, HOW in HECK am I gonna tell you WHO that last speaker was .... when you're EDITING NAMES of Docs who have AGREED to GO PUBLIC with their speeches??
Come on PLEASE! These guys are NOT "treating physicians"! They have "COME OUT" in an effort to INFORM!
GEESH! If the LYME COMMUNITY won't identify the COURAGEOUS KNIGHTS who BATTLE on OUR BEHALF ... aren't we doing THEM a disservice?
Posted by Lymetoo (Member # 743) on :
Go to Seeking a Dr if you don't think Dr L is still treating!!
Sorry... rules are rules here.
Posted by AuntyLynn (Member # 35938) on :
That's not my point, TuTu.
Without naming names in SOME contexts, how are folks to know to AVOID guys like Gary Wormser, or some of his Yalie cronies in Westchester County, who actually take folks OFF of their needed antibiotics?
Dr. C (who spoke) and Dr. H who spoke deserve our ACCOLADES! They make public comments in professional publications, and make public appearances all the time! How is the Lyme community to know WHOSE work is validated by THIS group, if we continue to shroud their identities, when THEY do Not?
Please don't take this personally ... it's not that I don't see your point.
But a lot of people here are too sick to take notes from 7 hours of videos. And I thought the purpose of this site was designed for "support."
Posted by Lymetoo (Member # 743) on :
It doesn't take long to figure out who's who.
I don't take it personally.
Posted by Lymedin2010 (Member # 34322) on :
My husband and I were there. 500 registered, but it didn't look like that many there. We stayed until Dr. H's talk. Hes our LLMD. Then hubby to tired to stay. Excellent. Your notes are great. Exactly as it went down.Empire Ins. guy? Ugh!! Typical for sure.
Posted by rera2528 (Member # 29886) on :
I stayed through the gentleman from the American Red Cross (I left at 3, as I had a long drive home). I thought the conference was extremely well done.
In terms of the ID doctor who was there, I think that it was great that he was, as well as the insurance people. There was a recurring theme of how to move forward, and there were several acknowledgments that this means bringing all people together.
The spirit of the conference was to hear multiple perspectives to see where common ground could be found. That was part of Dr. H's presentation, and his ideas about moving forward with his 15 steps, etc.
If the alternative viewpoints had not been heard, then it would have just been "preaching to the choir." Congressman Gibson and the organizers did a great job trying to add some balance. As was said in one of the presentations, it is in these non-adversarial situations that there may be opportunities to move forward (my paraphrase).
If any of the organizers are a part of Lyme Net, a big thank you for all of the hard work and dedication that clearly went into organizing this event. I am very glad I went.
Posted by WendyK (Member # 18918) on :
I got to be there too for the whole thing! lyme-o, too bad I didn't know who to look for, I would have said hi.
Excellent forum! I also took 6 1/2 pages of notes, but I think the best ones were already posted above, and its going to take a while for my (very worn out brain after being there all day), to go back through them and absorb it all.
I'm looking forward to the release of Dr. H's book... For the meantime though, I picked up a copy of Cure Unknown today, I haven't read it yet.
It sounds like Dr. H's 15 points and treatment outline are available on-line - I have to go find that since I couldn't write fast enough.
Posted by rera2528 (Member # 29886) on :
What I wrote down about Dr. H's 15 point differential and why patients don't get better (as in, look at all 15 of these with a patient):
1. Infections, parasites, viruses, Candida 2. Immune dysfunction 3. Inflammation, "sickness syndrome," cytokines 4. Toxicity (mercury, mold) 5. Allergies 6. nutritional/enzyme deficiencies 7. mitochondrial dysfunction 8. psychological 9. endocrine (ex - low testosterone) 10. sleep disorders 11. ANS dysfunction - POTS, autonomic nervous system 12. GI/GU 13. Elevated liver functions 14. Drug use/abuse (ex - narcotics that had been given for pain) 15. deconditioning and the need for PT
Sorry I don't have a lot of detail on those. I was writing as fast as I could. That man can talk FAST!
Posted by lyme-o (Member # 35115) on :
Aah too bad Wendy. We sat in the very top row. They told us to sit there because of hubbys bad leg. It was an awesome conference.
Posted by canefan17 (Member # 22149) on :
7. mitochondrial dysfunction
^ What can be done for that?
Posted by AuntyLynn (Member # 35938) on :
So glad that some of the folks here were able to attend! I'm capturing all four URLs for posting here a little later. (After reviewing for my personal notes, which is in progress.)
I came in mid Dr. H, saw the rest of the day livestream, then went back to view the first two videos that I missed.
Lorraine J did a great job of illustrating the monetary losses to society due to chronic Lyme, and how understated the epidemic is in actuality.
Dr. H was phenomenol! (How did he pack all that info into about a 20 minute speech? Whew!)
But Dr. L (the very last speaker) did a really professional job of illustrating the human suffering, and reprimanding IDSA for its part in this suffering!
What a wonderful day.
Posted by Keebler (Member # 12673) on :
- Canefan,
You asked about Mitochondrial support. Here's a start,
Topic: To everyone with CARDIAC symptoms please read!
Includes articles & discussion about exercise safety & methods
MITOCHONDRIA, MYELIN & ADRENAL SUPPORT - and how these can help in various ways. -
Posted by poppy (Member # 5355) on :
The only people looking for common ground are us. The black hats do not care and the only way things will change is when they are dumped into the trash bin. What we need is someone with the power to do the dumping.
Posted by seibertneurolyme (Member # 6416) on :
Unfortunately my poor old computer with dial-up was not up to the task as I expected.
Can anyone tell me if Dr Kilani from Clongen had anything useful to say? Hubby really is striking out with the labwork lately and is getting discouraged.
Proof of anything infectious is in short supply except for his live blood analysis which of course is not considered proof to any AMA doc.
He either wants the daily low grade fevers to go away or at least an explanation of what is causing them. Since I don't know of any new lab tests to order then I guess it is back to the drawing board and time to get really aggressive with babesia treatment.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
That 15 point list is very discouraging because as far as I know the only one that really relates to hubby is number 1. After 11 years we have pretty much ruled out everything else on the list.
Bea Seibert
Posted by Rumigirl (Member # 15091) on :
Well, Bea, as you know, that #1 is a pretty big category!! Have you called and spoken to Kilani at Clongen? He's very willing to talk to patients. He did have interesting things to say, forget what at the moment. He does think outside the box. He said that with all the tests, they do enrichment (of the medium).
Posted by nonna05 (Member # 33557) on :
I so wish more people had been there,,I just got 2 minutes of it and computer frooze..What about tomorrow's meeting/well today now ..with DR. B yes the B ,,,conference/in Connecticut
Can anybody get that so we can see it??????
Posted by dbpei (Member # 33574) on :
I was so very fortunate to attend this forum with my husband. It was an amazing day. NY is very lucky to have Chris Gibson in their corner. It was obvious to me that he is going to make change happen!
I was so impressed with the panel members and speakers, who all so eloquently shared their knowledge and their stories. Pam Weintraub, Dr. Horowitz, Kenneth Liegner,... amazing presentations.
I was also very impressed with the questions and feedback of their panel members following the presentations. This forum was a big step in the right direction. I hope there will be more like this.
I tried to take notes, but my brain and hands could not go fast enough. I did write down that in a few weeks, the entire forum will be able to be viewed by a link on lymenext.org.
Posted by poppy (Member # 5355) on :
Bea, adding to what was said above about Clongen, they feel that they get improved results by enriching the medium.
Also said that the best thing coming up in the future is microarray, so every suspected disease does not have to be tested separately. But this has to be designed to pick these things up, so that means you are not going to find unknowns in there.
However, elsewhere there has been work published that might lead to discovering unknowns. Doesn't look like it is anywhere near prime time, so not much use to you right now. If I can find the article, I will post it.
And as an aside, someone at the conference said tick spit vaccine was the way to go, but that the funding for this research had stopped. Makes sense because ticks can carry so many different things. That OspA Lyme vaccine now being tested in Europe is a step in wrong direction.
[ 05-22-2012, 11:17 AM: Message edited by: poppy ]
Posted by AuntyLynn (Member # 35938) on :
The FULL CONFERENCE VIDEOS, with references.
FORUM ON TICK-BORNE DISEASES Skidmore College, Saratoga Springs, New York 5/21/12
@ 10:45 Dr. Daniel C, MD, MPH (Mt. Kisco, NY) Former President ILADS, Beth Israel Medical Center, Mt. Sinai Hospital "Obstacles and Solutions for Tick-borne Diseases"
@ 45:24 Dr. David L, MS, PhD "Developing Intervention for Transfusion Transmission of Babesiosis"
@ 1:13:40 Dr. Kilani, founder Clongen Labs, Germantown, MD. "Challenges of Tick-borne Illness Detection"
@ 1:46:45 Dr. Kenneth L, Pawling, NY Forum Honoree "A leading warrior in Lyme" MUST SEE!
Says chronic Lyme patients are subjected to severe discrimination, which may require special protection under the law.
His patient, Vicki Logan, was first person to prove failure of IDSA recommended IV treatment, by CDC culture. (Chronic neuroborreliosis was cause of death at autopsy.)
Suppressing the evidence of chronic lyme - an ethics issue.
Implicating Gary Wormser, Empire BC/BS and Deloitte & Touche and IDSA Lyme recommendation committee member, Dr. Raymond Datweiller, (who testified for BC/BS when Vicki Logan sued in 1996 for IV treatment coverage).
Cites book "Deadly Spin" by former PR Director for Cigna, Wendell Potter, who exposed unethical public relations techniques used by insurers.
Suggests need for Lyme-dedicated treatment facilities and how they might be funded, and carving out Medicare/Medicaid exceptions to cover Lyme patients in nursing homes.
[ 05-22-2012, 01:44 PM: Message edited by: AuntyLynn ]
Posted by poppy (Member # 5355) on :
That Vickie Logan case really brought out some upsetting and revealing information. Like the CPA firm told Empire to increase their profit margin, which would be helpful in their attempt, successful later, to go to for-profit status. This was why the insurer started denying more lyme treatment. The switch to for-profit has ruined most of the blue cross companies. A few states have prevented the switch. More should have.
Bea, here is the article I was mentioning. Won't do us much good now, and might not be directly relevant to your situation since the pathogens involved might actually be known, just not covered in existing tests. Anyway, just for general info:
Hubby tried to have Clongen enrich his blood in December I think it was -- and of course nothing grew out. And at that time his blood smear showed what appeared to be babesia and also the unknown mystery dumbbell protozoan and whatever swarming mystery pathogen is attacking his white blood cells. But at that time he was on a very strong cocktail of babesia meds.
So in February on the advice of Clongen and after discussion with his LLMD hubby stopped all antimalarials, antibiotics, antiparasitics and killing herbs for the first time in 3 years. Was off meds for 50 days.
Repeated the Clongen bloodslide -- only thing that showed was whatever was attacking the white blood cells. Clongen did not see any need to repeat the culture or do the DNA testing that was done in December since both were previously negative.
Hubby restarted meds on the advice of his LLMD to try to provoke an antibody response and improve sensitivity of PCR testing. As you may know hubby ended up in the ER and hospital with a bad herx reaction (head CT showed a possible stroke which turned out not to be the case)and still continues to run daily fevers a month later despite resuming almost the same med cocktail he was previously on.
This time after the hospitalization we sent blood to SpiroStat and did both the lyme panel and the babesia panel -- did both tests two times using venous and capillary blood. Supposedly looked for the 70 most common tickborne infections. All PCR testing was negative, but as I posted elsewhere by law they are not allowed to tell the patient or doc if they find some unknown organism or bacteria that is not in the genbank.
Also hubby did a live blood analysis a couple of days after restarting meds -- before the hospitalization. That person saw a couple of babesia infected cells, one dumbbell protozoan and many l-forms of lyme plus a low level of what are most likely bartonella cocobacilli. I have video clips that I would love to post but my computer is not cooperating.
Anyway -- obviously the infections are still there -- hubby just had another die off reaction last week where his WBC and RBC both went low again -- but we can't prove what the actual infectious organisms are.
We tried to do another challenge test for the ECP to validate the babesia treatment, but unfortunately on the repeat blood draw hubby had zero eosinophils so those test results were not valid.
It is just so frustrating to not have a name for any of the pathogens or not have tests that can reliably and consistently show treatment progress or lack thereof.
If hubby ever goes off meds again I guess the only tests left to do are the F lab and the new lyme test (but if he really has the European strains I am not sure that test would be valid?) and Galaxy lab.
But hubby seems to respond the most to babesia meds -- as long as he takes high enough doses of enough meds and herbs his tremors and dystonia and nausea and vomiting can be controlled with the help of ativan and phenergan.
Hubby is not at all happy about the fact that he can't get back to the same level of functioning that he was at even while off meds. The ivermectin and sida acuta seem to have put the babesia somewhat into remission before the med challenge brought it back out of hiding, but they are not working as well this time around.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
Poppy,
That article discusses using 16S DNA sequencing which is what Clongen uses. Hubby and I thought that SpiroStat told us they use 18S DNA sequencing which is supposed to be more accurate.
We are both accountants so do not understand the technicalities of the 2 different methods.
Just wish one of them had worked.
Bea Seibert
Posted by AuntyLynn (Member # 35938) on :
Has anyone tested him for FL1953? (A form of anaplasmosis?)
Posted by CelticLadee (Member # 19972) on :
I have managed to watch two vids between my readings about tick borne diseases.
What a horrific epidemic with dead silence ringing in my ears from the lack of government intervention and/or health insurance support. Patient stories breaks my heart.
I am so impressed with Dr. H and his knowledge. Those of you that are blessed to have his expert care are so blessed.
His ideas are along the lines I believe all the chronic neuro-immune disease docs & patients need to think for sure.
Wasted years when his methods would get to the bottom of things more quickly, etc.
I do wish the microarray test was available to us now. Sure would eliminate a lot of messing around doing this, that and the other test. Amazing lab technology for the future.
Dr. K was very interesting to listen to and I gained some insights from him. Great to know there are people like him and the others at the conference trying to make a difference.
Bea, I read your explanation about your husband's treatments, etc. Opened my eyes to what a rough road you two have been on. Praying for answers, strength and better health.
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