here is what i gathered from my notes. keep in mind there are things he mentioned that I did not write down, I wrote down what i felt pertained to me or my situation.
Signs and Symptoms of tick borne illness (i only wrote down the things i thought I needed to remember)
Lyme- afternoon elevated fever Bart- CNS irritant, insomnia, jumpy, Gi upset, rapid relapse upon abx removal Babesia- night sweats, global headaches, air hunger, severe picture of lyme Ehriclia- Headaches behind eyes, sore muscles, low wbc Myco- patients symptoms worse with exercise, major neuro symptoms, found IN SICKEST PATIENTS & MOST IMPORTANT CO INFECTION
Testing-
Lyme- Western Blot W/ all bands, PCR, & urine antigen testing Babesia- Sereology, Fish, PCR, or blood smear Bart, Ehricilia, Myco, HHV-6, EBV, CMV- Sereology or PCR
Treatment-
Best Combo for long term chronic treatment-
Cell wall drug Intracellular drug Fluid & Tissue Drug Spiral, L Form, and Cyst drug example- bicillin, rifampin, biaxin, flagyl
Doses of abx MUST be pushed to maximum tolerable levels
Best orals in Dr. B's experience in order of effectiveness: biaxin, ketek, doxy, zith, minocin
Patients require a course of Flagyl
Treat Bartonella before babesia
Give any regimen 6-12 weeks before changing it
Treatment length must continue 2-3 months AFTER all signs & symptoms have disappeared
Consider "cycle therapy" (discussed in "cure unknown")
not reccommended for very ill patients. when ready, hit it hard with everything, then stop. wait 3-4 weeks for all symptoms to come back hard, repeat. expect brutal herxing.
Co-infection treatment
Babesia- Mepron, maleron. blood levels must be monitored. combine w 2 other drugs such as zith & art. 5 months treatment minimum. NO tetras w mepron or maleron
Bartonella- Levaquin drug of choice, do not pair w an erithromycin (biaxin, etc) combine w cell wall drugs can use w tetras & azoles alternatives to levaquin are combos of rifampin, sulfur, biaxin, and rarely gentamycin
Ehriclia- easy to cure, 2-4 weeks tetras
Mycoplasma- worst case scenario for lyme patients best regimen not known altho current info suggests 2-3 year treatment of therapy. combos of intracellular drugs are currently most promising
DNA viruses- HHV, EBV, CMV, ETC
Valcyte always better than valtrex treat 3 months minimum, often patients respond after 3 months but have no response whatsoever prior. treatment can be applied to igg or igm, no one knows yet..
and for the best part....the NEW stuff-
igenex can now test for Bb surface proteins for bands 31, 34, and 41 which means all you band 41ers can tell if your band is lyme or not! doesnt mean u dont have lyme, but can help narrow down..
new fish tests for ducani and Wa-1
new better cd57 test thru labcorp
new better cytokine testing
new infections rising such as micro worms, west nile virus, q fever, tularemia, and TBE virus
bartonella may in fact be tularemia in some patients due to the similar symptoms
DR B NEEDS YOU ALL TO GET YOUR DRS TO SIGN YOU UP FOR THE LYME REGISTRY. it is the ONLY way we will win the war, we have to document our info for the idsa, etc...
EXERCISE- crucial as we all know, push yourself, the more you do, the better youll get. NO exercise, not going to get well. Gym or health club regimens are best. ones designed for ill lymies are best also.
and finally-- TIGACYL. dr b says this has ALOT of promise, has built in efflux pump inhibitor, and combine w biaxin or ketek has a good chance at helping people get to a better place of health. very effective for most co infections. studies on the drug not out yet for lymies, but is PROMISING. if insurance will pay for, try it. very expensive otherwise
and thats it.
hope it helped
cheers
derek
[ 20. September 2008, 09:46 PM: Message edited by: djf2005 ]
Posted by gemofnj (Member # 15551) on :
Thank you so much for passing your notes on.
By any chance, do you know if you can get excerpts or a tape of this seminar?
Posted by tickbattler (Member # 14873) on :
Thanks so much derek!
By the way, I could have sworn that Dr. B said to treat bart before babesia. Are you sure he said it the other way around? My husband has both, so we are grappling with this issue!
I didn't catch his reasoning for this, although I thought he said you can't treat them at the same time because levaquin interacts with Merpon and the levaquin is less effective. Is this what you remember?
Dr. B's slides should be posted on the lymepa.org website soon. Also, you will be able to purchase a DVD of the lecture from there as well when it comes out.
tickbattler
Posted by djf2005 (Member # 11449) on :
np, glad to do so.
yes, they will be available on dvd from LDA website in a few weeks i am told.
there is some info from the lecture already available or will be soon i am told..
cheers and good health
derek
Posted by djf2005 (Member # 11449) on :
yeah i had it backwards sorry i changed it...
also, i believe its because bart is more immunosuppressive than babs, but im guessing
derek
Posted by luvdogs (Member # 9507) on :
I am confused here - I am currently taking mepron and zith AND levaquin.
The levaquin is a short course for sinus / bronchial (plus some bart I am sure).
Which should the levaquin NOT be taken with?
Mepron or Zith?
Should I stop them both while I do the levaquin 2 week course?
Thank you!
And thank you for sharing the notes on this lecture. I can't wait to get the DVD! I wish he was still treating patients Posted by bettyg (Member # 6147) on :
derek,
thank you for sharing your notes of today's dr. b lecture! much appreciated Posted by pryorka (Member # 13649) on :
hey luvdogs I take mepron and levaquin without zith, I could swear I've heard of others doing this. I know you shouldn't take levaquin with zith, but I haven't found anything solid about taking it with mepron yet. I've read every drug interaction I can find and the only things I find that you can't take with mepron are tetras, rifampicin, and milk thistle. So that's all I know for now.
Posted by lymemomtooo (Member # 5396) on :
Derek, thanks for this..I had to leave early..lmt
Posted by disturbedme (Member # 12346) on :
quote:Ehriclia- easy to cure, 2-4 weeks tetras
I'm not sure how much I believe that.
Well, my LLMD and I are not sure I have Ehrlichia but I've had low WBC for six years (around the time I was bitten in the first place). Starting treatment, I was on Doxy 200mg a day for a while and then I was on 100mg with a bunch of other things for over four months.
During that time, my WBC never really budged. Also, I started worrying since it wasn't budging that it was something else, so I even had a bone marrow biopsy done and that showed that my cells are making the right amount of all cells, working properly, etc. So obviously something else is doing something to my WBC.
I've also known people who treated with high doses of Doxy for quite a while and then were tested for Ehrlichia and it was still positive. So it's hard to believe that it's ALWAYS so easy to 'cure'.
Posted by UnexpectedIlls (Member # 15144) on :
what about people (like me) who have horrible neuro symptoms that keep them from being able to have much movement?? I cannot excersice and can barely walk/get out of bed mostdays because of these weird horrible unexplainable neuro symptoms I have had for 18 months... (feeling like I am in constant motion, falling into the ground feeling, variations of vertigo, 27/7 head pressure, veering off while trying to walk ETC...)
I guess because I cannot excerise I cannot get better
Its now obvious to me that having this horrible disease means never living a normal life again.... being sick the rest of my life... YAY.. so exciting. I had to actually stop reading cure unknown because I can't bear hearing anymore that I will never live a normal sick free life.
Sorry having a really rough day
[ 21. September 2008, 11:31 AM: Message edited by: UnexpectedIlls ]
Posted by luvdogs (Member # 9507) on :
Thank you Pyorka,
I had done research and made sure that others were doing this combo and that there were no drug interactions and had not come up with any.
It is confusing bc, even when things are not in the literature, there will be empirical evidence etc.
I cannot tell you how many times I have seen docs prescribe the tetras (tetra, mino or doxy) with mepron.
This one is fairly common knowledge of the negative drug interactions. I was on it myself and could not understand why the mepron wasn't working this time. Then it started working when I went off the mino.
That is why we always have to check it out elsewhere- no matter what docs prescribe us etc. That is my feeling. Esp when one doctor is prescribing the meds for the sinus infection and the other is prescribing for babs for example.
Thanks!
Posted by richedie (Member # 14689) on :
I went to the presentation and walked away feeling a little depressed about the news. Depressed because he mentioned if you have blue toes from time to time, that is a sign of CNS damage and the only fix for that is gammaglobulin (Am I spelling that correctly?) treatment? However, my feet have not been changing color lately so I should feel good about that! He said most insurance will not cover unless you have proof of nerve damage. Anyway, I also walked away with a new sense of confidence in beating this.
He also said you MUST treat Bart first, prior to Babs. This might be new from what I had heard. Maybe new research.
Also, where are his NEW guidelines???
[ 23. September 2008, 10:04 PM: Message edited by: richedie ]
Posted by djf2005 (Member # 11449) on :
the information written is what i gathered.
sorry i cannot interpret it for you all.
you are free to disagree or be sad or depressed about anything you like, just relaying the info...
cheers
derek
Posted by METALLlC BLUE (Member # 6628) on :
quote: I guess because I cannot excerise I cannot get better [Frown]
He means you won't get well if you never do it. He says that patients who can't exercise, shouldn't, until they can. Meaning: They rest and do treatment, then as they begin improving little by little, they then start exercising, which speeds recovery so they can get well.
quote: Its now obvious to me that having this horrible disease means never living a normal life again.... being sick the rest of my life... YAY.. so exciting. I had to actually stop reading cure unknown because I can't bear hearing anymore that I will never live a normal sick free life.
Chances of you staying ill as you have been, are very low. Chances are very good that you will get well, based on your history, current treatment, and the testing that has been performed.
I try to remain as objective as possible because facts are crucial.
Posted by Doomer (Member # 11013) on :
Derek,
Thanks for posting your notes from the presentation. I find them to be very helpful!
doomer
Posted by djf2005 (Member # 11449) on :
thanks mike for clearing up those questions..
sometimes i grow weary of answering questions but am grateful for LN and continue to try to help people as much as I can.
thanks for explaining.
and no problem doomer about the info, i wish everyone could have seen it. seeing dr b speak in person is a sight to behold. i would highly reccommend buying the dvd once it is available.
cheers
derek
ps doomer ill be emailing you shortly with the requested info about ssdi
Posted by jam338 (Member # 14002) on :
DEREK, thanks so much for posting and sharing your summary.
UNEXPECTEDILLS: "What about people (like me) who have horrible neuro symptoms that keep them from being able to have much movement?? I cannot excersice and can barely walk/get out of bed mostdays because of these weird horrible unexplainable neuro symptoms I have had for 18 months... "
Well, I am in a similar situation with not being able to exercise; bedridden for the better part of past 3 years; orthostatic intolerance and must be semi-recumbant/reclined with feet elevated. Exercise is not in the cards for me either. Not any time soon anyway.
As I understand it, the key benefit of exercising is it "pumps" your lymphatic system. Unlike the blood circulatory system (which has the heart for a pump), the lymphatic system doesn't come with an on-board pump. Instead it requires body movement and exercise to pump it. The lymphatic system is key to detoxing toxins.
Since I can't exercise I have been researching what I can do help in hopes that it gets me to where I can at least be able to stand up and walk.
There are things we can do to help the lymphatic system to work more efficiently. Not the same as exercise, but better than doing nothing:
4. Ion Foot Detox (controversial yes, but my LLMD swears by it)
We can also help kickstart it by using supplementation aides. My LLMD recommended Wobenzym, PEKANA Detox & Drainage Kit (German homeopathic), and Red Root extract.
I am very determined to get out of bedridden status. Please don't give up just because you can't do normal exercising. Once we reach this state of immobility, its baby steps back again. There is a way, we just have to find what works for our individual bodies.
Posted by CD57 (Member # 11749) on :
Great summary Derek! Q: was there anything about heavy metals in the lecture?
Posted by djf2005 (Member # 11449) on :
cd-
yes, he mentioned metals as one of the key components in late stage lyme illness.
i think its listed above.
he mentioned how dr H makes it a priority and if u remember dr b sent his patients there when he closed up shop.
he specifically mentioned mercury and arsenic, and also mentioned NOT doing methyl b12 injections without having mercury levels tested because if you do have mercury it mobilizes it in a bad way as the methyl crosses the bbb and re distributes mercury into the brain.
i found this interesting as i was doing methyl b 12 injections prior to testing and i in fact have very high mercury and have since discontinued the methyl shots. they made me feel worse and i didnt know why... now i know
he went on about chelation, etc for metals which i am doing, and yeah, said its one reason people stay ill.
cheers
derek
Posted by richedie (Member # 14689) on :
Anyone know where to get his latest guidelines form this year?
Posted by CD57 (Member # 11749) on :
Thanks again. What are you doing for chelation?
Another Q: what about mycoplasma.... Why is this worst case? My LLMD blows it off every time I ask, says most of the population tests positive for m. pneumoniae.
Posted by djf2005 (Member # 11449) on :
his new guidelines are not out yet. will be soon.
chelation i am doing 100 mg dmsa every 3rd night with 15 chlorella and 10 drops NM algin.
dmsa is not for everyone, some think its bad, yadi yadi yah... dmsa, edta, something is needed to push it out of the system.
he did not say why myco is the worst case, only that all his patients who were sickest had myco.
most of the population has anti bodies to myco but does not test positive. your llmd is telling you this because no one knows what to do about it. some speculate doxy covers it, others think it is one of the largest reasons we dont get well or take forever to get well. jury is still out. lyme patients become so immunocompromised that when infections like myco that otherwise would have stayed dormant (as in with the rest of the population) become active and cause major problems kinda like dna viruses..
hope dr H in ca is treating you well, i am sure he is. cheers
derek
Posted by sixgoofykids (Member # 11141) on :
Unexpected, check out his guidelines .... they say to start with physical therapy and move up as you can. Exercise is on an as you can basis! You will get better.
Thanks, Derek for posting this. Makes sense now why I got so much better when we treated bart. Posted by Angelica (Member # 15601) on :
I wonder if any kind of B12 injections are okay to do with high mercury levels?
Posted by UnexpectedIlls (Member # 15144) on :
What are bart treatments???
Oh and sorry for my depressed comment yesterday it was a very rough day for me... Thank you for posting this info!!!
Posted by merrygirl (Member # 12041) on :
Thanks for posting this.
Melissa
Posted by Clarissa (Member # 4715) on :
D:
Are you secretly a genius as well as a Lyme patient?
Awesome job!!
Posted by djf2005 (Member # 11449) on :
well............
in answer to your question clarissa.
BEFORE lyme i was pretty damn smart, NOW it just takes me longer to gather my thoughts and prepare what i want to say or write but I am slowly regaining my executive and cognitive funtion at a rate that may exceed one day my prior functioning.
only time will tell.
no genius here tho. just a dedicated sick person tired of being sick and going to great lengths to get unsick
cheers
ps-
u can use normal b12 shots w/ mercury or other metals as far as i know, just not methyl because it crosses the bbb and redistributes the mercury into your noggin!
Posted by djf2005 (Member # 11449) on :
also-
bart treatments are as posted above in the summary-
Bartonella- Levaquin drug of choice, do not pair w an erithromycin (biaxin, etc) combine w cell wall drugs can use w tetras & azoles alternatives to levaquin are combos of rifampin, sulfur, biaxin and rarely gentamycin
translation: use levaquin if tolerable. if NOT, combine intracellular drugs like rifampin and doxy with something like zithromax or biaxin. sulfur drugs(bactrim) can be rotated as well as the new drug tygacil showing promise. do NOT erithromycins (biaxin, zithromax, roxy, etc) with levaquin as it lowers levaquins ability to penetrate cells and thus lowers its effectiveness.
thats basically it.
it that all doesnt work there ie yet more to be experimented with.
cheers
derek
Posted by not so sublime lyme (Member # 15185) on :
Derek,
You may deny being an intellectual genius (currently), but you are a genius for knowing how to help people!!
Seriously, this is one of the most (if not the #1 post) helpful posts I have read, at least for me personally.
THANK YOU SO MUCH!!!!!
P.S. Does anyone know if Dr. B. has any plans to lecture in DC, VA, MD area?
Thanks again Derek for all the hard work and taking all the time to relay this info to us.
Jeanne
Posted by djf2005 (Member # 11449) on :
np, the only way we are going to get well is to help one another since the medical establishment doesnt acknowledge us...
ill look into dr Bs schedule and post it once i find out..
cheers
derek
Posted by Erica741 (Member # 15186) on :
Derek, Thanks so much for all your efforts and this great information!
I'm relieved to see that someone else already inquired about other types of B-12 injections for those of us with high mercury (thanks Angelica!).
My LLMD just prescribed hydrox b-12 injections, and I may have been slightly concerned given my high mercury levels (though not too concerned because I know my LLMD is on top of the latest research...I assume he already knew not to prescribe methyl b-12 to me).
Thankfully I can now do the injections 100% worry-free. :-)
Derek, your research and help is much appreciated (though I'm sure by all thanks above you know that). Your information is especially helpful to those of us who are still too sick to do any research beyond reading posts on here.
Erica
Posted by djf2005 (Member # 11449) on :
yeah np.
good call w the hydrox, im going to ask for them instead
derek
Posted by thomasx (Member # 13431) on :
Derek, Thanks and can you elaborate on the following? "not reccommended for very ill patients. when ready, hit it hard with everything, then stop. wait 3-4 weeks for all symptoms to come back hard, repeat. expect brutal herxing." How long is the initial "hit it hard with everything" phase to be?
Tom
Posted by djf2005 (Member # 11449) on :
dr b and pam used the method.
they treated until their symptoms resolved, and then stopped. then took the break, waited for symptom return, and restarted. repeat.
many of us the symptoms do not go away tho, so its kind of pick a place and try it.
i am considering it in the future.
so i guess the hit it hard part can be a week, a month, a year, years, all on how the person responds.
best case scenario is how dr b did it and how he responded with the 2-3 months treating, abatement of symptoms, discontinue, wait, get sick again, and repeat..
derek
Posted by Angelica (Member # 15601) on :
Derek thank you for all the good information!
Posted by njgirl14 (Member # 14174) on :
derek
when you say methyl b12 is that methylcolbalimine?
I am doing those and never been tested for mercury. what type of test did you have for mercury & which lab?
that concerns me about the blue toes. I have that.
Posted by djf2005 (Member # 11449) on :
yes it is.
ask your llmd for a provoked heavy metal urine test
good luck
derek
Posted by njgirl14 (Member # 14174) on :
derek
i tried to PM you but your box is full.
you go to dr h right? I may have to switch llmd and i am considering dr r in nyc and dr h.
any info about either/both is appreciated. PM me.
Posted by djf2005 (Member # 11449) on :
i emptied my inbox, you should be good now.
derek
Posted by thomasx (Member # 13431) on :
What is treated with the Flagyl? And how long at what dosage? Thanks again. Also, any idea when the Guidelines are to be updated?
Tom
Posted by CD57 (Member # 11749) on :
Derek--did he say that Tygacil was good for Lyme and co's, or just co's?
Posted by djf2005 (Member # 11449) on :
he did not elaborate on the flagyl combos other than it will be required for most cases. he said "one" course which leads me to beieve a few months at least.
tygacil good for "most" co infections. i am guessing not for babesia, maybe the rest.
derek
Posted by richedie (Member # 14689) on :
Derek, thanks for letting me know the guidelines aren't out yet. Thanks!
Posted by steven (Member # 13101) on :
thanx for posting!
has anyone tried the new tetracycline TIGACYL that dr. b recommends yet?
Posted by tickbattler (Member # 14873) on :
For those of you who wanted to know Dr. B's reasoning for treating bart before babs, I sent an e-mail to the lymepa website and asked them to forward my questions to DR. B.
I also asked about whether Mepron or zith should be taken with levaquin and here is what he said:
*********************************************
Here are Dr Burrascano's replies to your questions.
======================================================= -----Original Message----- From: Joe! Sent: Friday, September 26, 2008 11:06 PM To: HLKliman Subject: Re: Questions following Dr. Burrescano's lecture
Hello!
I am glad it was well received- It's good to be able to share the fruits of 25 years as an LLMD.
Also, I had fun, and it was good to see everyone again.
The monoclonals I referred to are in the pipeline- I just don't yet know when the launch date will be.
Regarding the bartonella-babesia treatment question-
1- quinine based drugs like Mepron and quinine itself may render Bartonella more resistant to future treatment with Levaquin and other fluoroquinolones, so treat the Bart first and then treat the Babesia. Likewise it would not make sense to use quinine drugs WITH Levaquin at the same time.
2- cannot mix any fluoroquinolone (I.e. Levaquin) with any macrolide-type drug (zithro, biaxin, ketek)- they seem to negate each other.
**********************
Hope this helps. This came from the lyme god himself! Note that his entire slide presentation and handouts are now on the lymepa.org website and they are very detailed and helpful!
tickbattler
Posted by gemofnj (Member # 15551) on :
Where or how can we get a transcript, tape or copy of this seminar?
Posted by tickbattler (Member # 14873) on :
the DVD should be coming out soon. Check the website I mentioned above.
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