Dr. B and Lyme patients in NYC

[tainabell]

Hi all,

I thought I'd let you all know about a conference that I'm going to this coming Saturday…

http://lymenyc.org/

For those who don't know, Dr. B basically wrote the book when it comes to current Lyme treatment guidelines, so I think its a great opportunity to see him speak. 

If you're in the NYC area and are a Lyme patient, you should go!  PM me if you're planning on attending and I'll look out for my fellow Road Backers there.  :roll-laugh:

[Maz]

Hi Jen,

Would love to come but not able to make this event unfortunately. I may try to come into the city for future ones, though, as I think Dr B does them on a fairly regular basis, doesn't he? It takes me about 2 hours to get into the city, so a full day's outing for me and means I have to plan well in advance. Would be great to come in and meet you sometime, though…thanks for the heads up.

RBF will be going to the Empire State Lyme one day conference on March 14th (10am to 5pm) to give a presentation, if you can make that. Although subject to change, several notables from RBF (past and present) will be there…I'm sure Cheryl will give some kind of advance announcement, so won't spoil the thunder. 😉

http://www.empirestatelymediseaseassociation.org/

Peace, Maz

[tainabell]

That's awesome that RBF is going to be at the Empire Lyme Association conference.  That's not in the city, is it?  I don't have a car, so its sometimes tough to get to things at places not located by the nearest subway line, but I'll def try to check it out!  😀

[Kim]

Looking forward to the feedback, Jen.

[tainabell]

Hey all,

So I just thought I'd update all.  Went to see Dr. B. today – it was a very uplifting and educational experience.  I had kind of forgotten about Dr. B. from Pam Weintraub's book, but after re-reading the part about his testimony and litigation, the picture was so much clearer.  He definitely deserves his “rock star” status as a Lyme expert – he is charismatic and well spoken, informative and down-to-earth, easy to understand, and he also had a great sense of humor.  Also, for someone who has been investigated for mistreatment of patients, I thought he was very measured and conservative about his approach to treatment.  Just goes to show how out-of-control the certain parties have gotten about the whole Lyme wars.

So here's some main points I took – mostly things I had read elsewhere but really needed the benefit of a power-point presentation (“Living with Lyme”) to really bring home. 

1) Coinfections.  He said they are basically universal in Chronic Lyme.  If you've had Lyme for over a year, he said you probably have a coinfection thats affecting your treatment.  You might have had the coinfections before, but it took the year or more of Lyme weakening your immune system for them to really step up and its almost inevitable they are causing you problems now.

Interestingly, he talked a lot about mycoplasma.  He said that patients who have mycoplasma AND Lyme have a much harder road than ones who just have one of the other.  He also reiterated what I think we all knew, that mycoplasma is very hard to test for (lots of false negatives) and has to be diagnosed clinically.  (I also didn't realize that mycoplasma was a co-infection of Lyme so that was news to me.)

2) He talked about the 4 week cycle of Lyme and encouraged everyone to keep a calendar that diligently documents their cycles and ups and downs.  If you have a “bad week” at the same time every month, and that week comes and you're not feeling so bad that's a test-free way to see you're improving.   Susan, he also mentioned that babesia keeps a 5-6 day cycle, so you might want to see if your symptoms are cycling like that. 

3) He talked a lot about compliance with his program. 

http://ilads.org/files/burrascano_0905.pdf

I knew that I had to cut out the alcohol and improve my diet (low carb, high protein), go on an exercise program, etc., but he really drove home at the talk what NOT complying with each thing does for your health.  I had a really bad week this week, for example, and I'm pretty sure now that it was because I drank last week.  Dr. B explained that they've done clinical studies where they measure the activity of a Lyme bacteria exposed to alcohol and they find that it actually becomes MORE aggressive, while at the same time the alcohol is weakening your immune system.  So lesson learned.  No more mojitos for me.  😕

His talk was very empowering, about taking your treatment into your own hands (with compliance and following your LLMDs instructions), and really jerked me back into that mindset where I feel like redoubling my efforts.  I also felt pretty hopeful after the whole thing. 

Oooo!  And also, this is specific to me, but after the presentation I asked him if he'd ever heard of a Lyme patient with chronic hives and he said that his SON had that reaction to Lyme.  He told me that if the hives are not clearing up with the doxy, then the doxy is not the right drug for me.  He also referred me to an allergist in Long Island who has written papers on the connection between hives and Lyme!  So that was a very hopeful moment for me. 

All in all, it was well worth the price of admission (and that was free! plus a free lunch!) I just wanted to share my experience with all of you cause it was really good to get to that point where things look sort of hopeful.  :roll-laugh:

[Trudi]

Jen–

Thank you so much for taking the time to tell us about Dr. B's presentation.  Very interesting. 

Of recent, I have had either a mixed drink or a glass of wine with company.  Mind you, that only amounts to two in two weeks :), but maybe that's why I've had an upswing in symptoms.

I also have mycoplasma and Lyme.  Yup, it hasn't been the easiest.  :doh:

Did he mention a nap a day?  He is a big one for lots of rest!

Thanks again for sharing,

Trudi

 

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[lynnie_sydney]

Fantastic post Jen, thank you. Lots of really interesting info in there. Lynnie 

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Joe M]

So drinking less, a good diet, and an exercise program promotes good health?  Who knew?

[tainabell]

[user=442]Trudi[/user] wrote:

Did he mention a nap a day?  He is a big one for lots of rest!

 

 

Yes, he mentioned it!  He's already famous in my house because whenever I'm feeling lazy I always quote this line from the Diagnostic and Treatment Guidelines, “Naps are encouraged.”  I'll always be like, “Honey, sorry can't do those dishes cause naps are encouraged!

Very funny, Joe!  I know, it should be obvious, it is obvious, so why is it so hard to do?  Maybe because mojitos are so yummy.  :blush: 

[Kim]

Hey Jen,

How lucky for you that you got to see Dr. B. in person ~ how lucky for us that you went and reported back. 🙂

I'm still struggling with the whole living with Lyme and maintaining some normalcy in my life, being that this is a very long term treatment.  For now, my compromise is compliancy during the week, and take a break from abx and supplements on weekends and enjoying a glass of wine with dinner.  My LLMD has me taking tons of supplements and I wonder if my body will ever start producing it's own if I never give it a chance to do so…….hence, the break on weekends.  Dr. B. would probably give me a smack-down, but as long as I'm improving (and I am) I'll carry on.  Having said that, I'm currently treating Babs and am having a lot of neuro-herxing which is making me dizzy so will skip the wine on weekends until this passes, but still take a break from abx and supplements for two days each week.

It all goes back to finding what works for you and making adjustments along the way.

Thanks for the great report………kim

[tainabell]

Kim,

I have struggled a lot with compliance as well.  I started back in on a GF diet today, and am resolving to refrain as much as possible from the alcohol.  But your plan, off and on, sounds like a great compromise.  A lot of times I get crazy when I try to eliminate things and I do it for a couple weeks or a month or whatever, and then I just crash and indulge. 

The thing is I'm sort of rebellious.  I don't like being told what to do – even if I'M the one telling me what to do.  So I've decided if its Valentine's Day or Christmas or someone's wedding, I'll have one glass or wine or champagne, but otherwise I'll refrain.  Sometimes you just have to have to give in or you'll go crazy. 

By the way, I found an LLMD in New York who takes INSURANCE!! Yay!!  So cross your fingers that he's good!

[Author]

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