Topic: This SAT: Doc B HIMSELF to Moderate NY Support Group!!!
CaliforniaLyme
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OH MY GOD YOU GUYS ARE SOOOOO LUCKY!*)*)!!! Their names were in this fully written, I am just transferring it here so people know- &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& The next Meeting of
The Greater New York Lyme Neuroborreliosis Support Group
is on December 8, 2007 12:30 - 2:00 pm
Moderated by: Dr. Joseph Burrascano, Founding board member of the International Lyme and Associated Diseases Society. and Dr. David S. Younger, Chief, Neuromuscular Diseases, NYU medical Center.
The Greater New York Lyme Neuroborreliosis Support Group Meets the 2nd Sturday every other month At 12:30 pm - 2:00 pm 2007: 12/8 2008: 2/9, 4/12, and 6/14
at New York University Medical Center Rusk Institute, Horizon House - Ground Fl. 400 E.34th Street New York, NY 10016
Lunch will be served.
Rusk Institute is handicapped-accessible with parking near the entrance on 34th St.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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oxygenbabe
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Can someone tape it and create an MP3? I'm supposed to go to my holistic doc in Long Island Saturday. I would love to go and he probably would too. Arg.
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CaliforniaLyme
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Maybe you could meet him at the meeting for your appointment OXy!!! And just talk before & after or somethign!!! I would LOVE to be there!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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oxygenbabe
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I suppose I could get up early and go out to Long Island early and get back in time for the talk. I use IVIG so I'm really curious about Younger's use of it. Plus I wonder if some chronic lymies would get better on abx plus IVIG.
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bettyg
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boy, are you folks LUCKY! wish i lived closer. yes, can anyone tape this, etc for the lyme community?
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sparkle7
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I'm going to try to make it there if I can. I may be able to tape it.
I'll see... I have been pretty ill, lately. So, I don't want to say I'll definitely be there.
I'll let you know if I have anything to share.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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CaliforniaLyme
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Aside to Oxy: Doc S uses IV IGG with a subset of his patients!!! he was using it already for his work with fertility disorders and so when Lymies came along into his practice he went, "Hmmm!"
Back to topic: NO KIDDING BettyG!!! I wish I could be there!!!!!!!!!!!!!!!!!!!!!!! And there's even LUNCH!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Yes, I will be there, but hubby is in Lenox Hill Hospital in Manhattan. He so wanted to meet other fellow Lymies.
Still don't understand why Doc Y admitted hubby to Lenox Hill instead of NYU -- my suspicions are that it was easier for him to get the staff at Lenox Hill to agree to stop hubby's symptom control meds cold turkey. Both psych and pain docs were overruled regarding discontinuing IV Ativan, IV Demerol and IV Phenergan cold turkey.
Needless to say hubby is in a real bad place right now after being told to stay off all IV meds, you don't need antibiotics and your problems are all psychological. And the icing on the cake is that he was offered a trial of IV IgG that was later rescinded by the doc. Unfortunately not the only promise that has been broken.
I should have heeded the big red flag when one of the neuro's office staff told me on the phone that the doc treated lots of "post Lyme disease patients".
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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if someone who is going to the conference sees this in time, could they please ask Dr. B what he thinks about BLO - bartonella-like organism infection...what he thinks it is, and where he thinks it came from. what I mean by this is something he has written about, a bartonella-like organism that mainly responds to levaquin and doesn't respond to older generation abx.
does he feel that it is a bartonella, or does he think that it might be a related bacteria. does he think it is possible that it could be an engineered form of brucella and lastly, has he extensively tested patients for brucella exposure. during ww2 period they experimented with tick born brucella and abx resistant brucella.
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canbravelyme
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Any news from the meeting? How did it go? What did Bea think?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Vermont_Lymie
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Wish I could have gone to this one, but am traveling. I will try to make it to the next NY meeting.
I hope some lymenetters got to meet Dr. B, ask lots of questions and let the rest of us know how it went!!
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sparkle7
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I tried to go but I was too ill to make it to NYC today. Maybe next time?
Any reports from anyone who did make it?
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I did get to go to the support group meeting. Had never been to one before. A very interesting and useful experience.
There were about 75 people in attendance. Each person took a few minutes to introduce themselves and talk a little about their personal experiences with Lyme.
I decided to burn my bridges so to speak and publicly embarassed Dr Y. Said that our trip to New York to see him had been our biggest disappointment to date.
Issued a challenge to other physicians in attendance (Dr B and 2 psychiatrists) to examine hubby at Lenox Hill Hospital regarding his psych diagnosis. I got very emotional and am not sure if I got my points across very well or not.
One of the most amazing things to me is that no one questioned Dr Y about his numerous statements regarding post Lyme autoimmune status.
On a personal note, Dr Y has concluded that hubby has no active tickborne infections without doing any immune system tests or any tests for infectious organisms (tick-borne or otherwise). Was actually informed that immune status is not even relevant in this situation. Dr Y never questioned us in detail regarding amount of antibiotic treatment hubby had received.
About half of the people present were Dr Y's patients. They had either done IV IgG in the past or currently. Got the overall impression that it had only been about 50% effective.
Dr Y mentioned that IV IgG is not appropriate for all Lyme and tickborne patients. His criteria for choosing patients is very different than that used by Dr K (the LLMD neuro in Connecticut).
Dr K bases his decisions on bloodwork testing subclasses of gamma globulins. Hubby did not qualify 3 years ago as his WBC and all subclasses were normal at that time. Subclasses have not been retested since then.
Dr Y selects his patients based on the results of very specific research tests of the autonomic, central and peripheral nervous systems. Would love to do these tests on hubby, but we just do not have the $6000 to spend up front -- may or may not be reimbursed partially by insurance.
During the meeting Dr Y read several research proposals from other NYU scientists. At least one of these sounded very interesting. These projects are all unfunded at this time. Dr Y mentioned that he is seeking funding to get his testing done at NYU in the future.
Dr B spoke for 10 or 15 minutes at the end of the meeting. It was an almost unreal experience as he is coming from such a different viewpoint than Dr Y. It was almost like Dr B could have been describing hubby.
Dr B mentioned that patients who do not get well frequently have untreated Bartonella (especially if you relapse quickly after stopping IV Rocephin -- Rocephin suppresses Bartonella).
Or they have mycoplasma -- same meds used to treat Bart and mycoplasma. Mycoplasma tests are notoriously inaccurate -- only 1 in 10 tests are positive. Did mention that some strains of mycoplasma were government engineered.
On a personal note hubby has a couple of tests showing cold agglutins after he started Bart treatment -- mycoplasma pneumonia is the most frequent cause of cold agglutins.
The third issue mentioned was reactivated viruses -- HHV6, Herpes #8, Epstein Barr and Mono all mentioned. Valcyte better choice than Valtrex. Need to treat for 4 months minimum. 4 -6 months suggested.
Mentioned immune system markers such as CD57, C3A and C4A as indicators of active infection. Hubby has never had C3A or C4A tests.
Also briefly mentioned cytokine storms and using plaquenil or IV IgG to minimize herx reaction.
Exercise is important once the infections are brought under control and patients can tolerate resuming exercise.
According to Dr B patients who do not relapse in 3 years never relapse.
Wish I could have mingled longer at the meeting. Dr Y found me at the hospital in hubby's room a couple of hours later asleep in the chair.
Plan is to transfer hubby to Columbia on Monday as a psych patient. I think I am still in shock and disbelief over all that has happened this week.
Will post an update Monday or Tuesday. Hubby finally got some sleep last night and is much improved this morning since hospital psychiatrist finally talked Dr Y into resuming oral Ativan at a low dose.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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CaliforniaLyme
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Bea, you are awesome. Thank you for writing that out (twice). I am glad you spoke out!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Hi As I mentioned I had the IVIG through Dr. Y and it did NOT help. Actually it was a horrific experience. I will be more than happy to speak with you privately. I am seeing an LLMD and having a much different experience. I saw that some group gave Dr. Y money for his research a few days ago....it is always good to see some research. Sorry but going to NY was a horrible and painful experience that cost me a ton of money that I do not have.....
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oxygenbabe
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"Untreated bartonella." Who knows what it really is. We give these names to the bugs as we try different drugs. Maybe its the weaponized mycoplasma. Whatever was in the tick that bit me in 2000 was completely different than any bug I'd ever encountered and I believe it was weaponized because it is both totally virulent (feels like every cell is poisoned and leads to crushing fatigue) but not with enough other symptoms to be a virulent bug (most really virulent bugs that lay you out have a panoply of all kinds of symptoms at once). So imo its the crystalloid toxin bioweaponized from brucella/mycoplasma whatever you want to call it. It takes a few months to *really* take hold and it spreads in spite of abx at least in the doses normally given in early disease.
I don't think its in all the ticks. Those who get well in a few weeks from early lyme did not get that bug in their tick.
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djf2005
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WOW.
so the government is making mycoplasma (awesome) and dr Y sounds like a HUGE smacked a$$.
sorry to be blunt here, but seuro, i am SO glad you are transferring him somewhere else.
why would dr y say he has NO active infections due to blood tests? we all know, even idiots, that ALL tickborne infection testing is flawed, if not useless.
i wish i could have been there. id'a spoken my mind. i am glad dr b contradicted him. the audacity of dr y.
i hope you find relief soon. and aglindobruce-
i am also interested in this. if you find your answer, please pm me.
humbly,
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
thank you for retyping what you lost earlier since you had so many powerful statements here.
CONGRATS on confronting dr. y, and just telling it like it is to those present!
it's such a shame dr. b has retired;; i don't remember if steve was ever seen or treated by dr. b himeself!
thanks for speaking out on behalf of ALL his patients! you are the MOST SUPPORITIVE, EDUCATED SPOUSE i've met during the over 3+ years here!
i hope columbia lyme research center can come up with something CONCRETE as to what is happening and why!
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cantgiveupyet
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Bea,
Thanks for the update. Im proud of you that you went up against Dr Y. Did Dr B take you up on your offer to go see your husband?
I think it would be a good idea to somehow get some dr to run a C3a and C4a. Mine are sky high! Quest even recognizes C3a as a marker for acute lyme...its under their testing.
I also am now testing positive on IGG for myco pneumoniae...showed up in March for the first time. It showed up after I was on catsclaw for a few months.
I will await your update in the next few days.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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heiwalove
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bea, thank you so much for the report, and i am SO SORRY to hear what's happening with your hubby.
i too am really proud of you for publicly stating the truth about dr. y. that was incredibly brave.
i'm sure you've already thought about this over and over again, but i am just so aghast - isn't there anything you or anyone else can do to prevent your husband from being transferred to a psych hospital? he is obviously very physically ill with lyme & co, etc; this is infuriating to me. three years ago i was unjustly imprisoned for 5 months in two different psych hospitals because no one believed i had lyme; the psych ducks diagnosed me with 'somatic delusional disorder' and put me on high-dose, dangerous antipsychotics (all the while denying me lyme treatment while i was near death). i escaped forced (court-ordered) electroshock therapy by a hairsbreadth. it was without a doubt the most horrific experience of my life. i bristle when i hear of another lyme patient enduring something similar.
my heart & thoughts are with you & your hubby, bea.
posted
Bea, Something else to watch...after I had the IVIG at Lennox Hill my sed rate went sky high. I saw this in a research article afterwards because I was scared. It is still high..61...they checked it again yesterday so I will know more tomorrow.
Since they did not check this...or any tick blood tests before the IVIG....I am not sure how high it was before I started the IVIG. Same...no blood tests until the 5th day...never sent them to a decent lab either.
Be careful with NY Columbia Pres..also. I was placed on prednisone there...you know what happened...nightmare. Dr. Fallon is in the psych institute (different from the main hospital) but they did not let me see him. He is supposed to be the one to see there. You need an advocate when you go to the hospital...like you...your husband is lucky to have you.
I do not know where you are located but I am now going to an LLMD in NY about 45 minutes away....it is worth the trip everyday. Good luck Bea...thanks for letting us know about the meeting. You can contact me anytime.
Posts: 422 | From CT | Registered: Oct 2007
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Thanks so much for your concern. I was hoping to meet you yesterday. I have read your story and can sympathize.
Hubby had 3 psych admits early in his illness before anything was diagnosed. So we have been down this road before. He was also offered electroshock which we refused.
I do need to make sure this is considered a voluntary admission which gives the patient more rights. This usually means 3 days and you are out.
Hubby and I are ok with this transfer. We both feel he still needs medical supervision for a few days to make sure he is eating and sleeping.
Whether or not he is addicted to Ativan is not the issue. The whole point of this trip was to find some med which could control the muscle rigors so that he could continue to treat the Bartonella etc.
If we are really lucky then maybe he can be put on something like Lyrica for the nerve pain -- half of the reason he can't sleep is because of nerve pain in the back of his neck -- this is a new symptom and was caused by the greatly increased tremors/myoclonus brought on by the med changes. He had a similar problem 4 or 5 years ago before he was diagnosed.
Dr C in Missouri has promised to call Brian Fallon personally so we are cautiously optimistic.
Hubby is bouncing back pretty well from this experience -- he was admitted last Tuesday so hopefully the worst is behind him. I think hubby can communicate his position and I have all the medical records to show the psychiatrist.
I also have the letter I wrote regarding our issues with Dr Y at the current hospital. Dr Y apparently took me seriously enough that he contacted the legal department at the hospital. Will find out tomorrow exactly how to go about filing a complaint against the doc -- remains a possibility.
Bea Seibert
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lymednva
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Bea,
I'm so sorry about all you are continuing to go through. Bravo for standing up to Dr. Y. You are to be commended for it!
I'm glad that Dr. C has contacted Dr. Fallon about seeing your hubby. He needs someone in his corner now, and perhaps this is what you've been waiting for.
I do hope you are able to turn this horrific trip to NYC into something that gives you hope.
Do keep us posted on what happens after the transfer.
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heiwalove
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bea,
good to hear that you'll have dr. fallon in your corner, and that this is a voluntary admission. i'm breathing a little easier now.
i really wanted to make it yesterday but just didn't feel well enough; i'm often not very functional in the early part of the day. if it was an evening thing i definitely would've been there! so sorry to have missed you.
Some brief notes from that DVD He say's that 8-12 weeks levoflaxoxin seems to be the cure but other abx that work for cat scratch does not work. cipro levofloxacin best treatment - efficacy decreased if given with other erythros
some abx improve symptoms but don't clear infection -
zithro does not work and doxy does not work
3 months if tolerated - more effective if given with proton pump inhibitor
I think he said that it's possible that BLO's may be a different strain of borrelia but that may have been Dr. F. rtsp://ldarm.webcastcenter.com/lda/lda04_mfried.rm
Bea - thank you for the notes. I'm so sorry for everything you guys are going through. I am outraged at what Steve and Heather have had to go through and I know they are not the only lyme patients!! It does sound like Dr. B. maybe tried to address your situation in his presentation? Maybe some of it sunk in for Dr. Y??
Holding healing thoughts in my heart for you and Steve.
Terry
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Thx for the report. Re Dr B saying some strains of mycoplasma were governmentally engineered, do we have any more info on that? Do we have any more good tests for mycoplasma? Do more need to be developed?
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valymemom
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Thank you, bea, for always updating Steve's journey. You help all of us by doing this.
I hope you know how much we all appreciate you and pray for you to continue to be courageous.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
Just remembered one more thing Dr B mentioned. He said that blood levels of antibiotics were very important. Suggesting measuring blood levels of antibiotics.
One in particular he mentioned was IV Doxycycline -- works best with once daily dosing of 400 - 600 mg. Don't know about the rest of you, but I think hubby would end up in very serious trouble with such a massive dose -- could not get above 50 mg twice daily in the hospital.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
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good luck on finding out procedure to file charges againnst dr.. y! and hhospital contacted their legal dept!! you're one tough cookie advocating for your very sick hubby.
look forward to updates from you on steve!
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quote:Originally posted by oxygenbabe: "Untreated bartonella." Who knows what it really is. We give these names to the bugs as we try different drugs. Maybe its the weaponized mycoplasma. Whatever was in the tick that bit me in 2000 was completely different than any bug I'd ever encountered and I believe it was weaponized because it is both totally virulent (feels like every cell is poisoned and leads to crushing fatigue) but not with enough other symptoms to be a virulent bug (most really virulent bugs that lay you out have a panoply of all kinds of symptoms at once). So imo its the crystalloid toxin bioweaponized from brucella/mycoplasma whatever you want to call it. It takes a few months to *really* take hold and it spreads in spite of abx at least in the doses normally given in early disease.
I don't think its in all the ticks. Those who get well in a few weeks from early lyme did not get that bug in their tick.
I agree with your sentiments 100%. It seems to me that something is eating me up aside from lyme and it is only responding to intracellular abx. I don't know what it is but the inclination is to put a name on it. Bartonella? rickettsia? mycoplasma? whatever it is, it really screws a person up. I am very suspicious of the government and I have a concern that whatever it is might be something that is 'undiscovered', ie, not known outside of government WMD labs.
They have got to be covering something up here aside from lyme.
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oxygenbabe
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Yes. If you can tolerate a high dose of paranoia and bad writing, you will find a lot of good info in The Very Unfortunate Event at Skull Valley...I think thats the name of the book. They are too into conspiracy theories and that's a problem--once you realize the military/industrial complex can and has masterminded what seems the equivalent of evil--you begin to think they can and have always done so in every case. That is not so. But there is substantial evidence we had a bioweapons program, we weaponized some bugs, and we experimented with ticks as a vector and either planted it to see how it would spread (in old lyme connecticut I guess) or just were so stupid and sloppy it got out. The latter is quite feasible. There is no end to human stupidity. I was just told yesterday that the whole way that cows got prion disease was by feeding cows, which are vegetarian, sheep parts when the sheep had scrapies. And so now we have all the worries about mad cow disease.
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It does sound like Dr. B. maybe tried to address your situation in his presentation? Maybe some of it sunk in for Dr. Y??
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