Mods: If this is the wrong place to post this please move it to the appropriate place. Thanks!
Gary
Posted by tickled1 (Member # 14257) on :
Thank you SO much for that. Great information!
Posted by seekhelp (Member # 15067) on :
Well, this line is BS based on just being around LN for a while.
"If you have not relapsed in 3 years, you never will."
Posted by txgirl09 (Member # 21612) on :
This is great information. Thanks, Gary.
Posted by tickled1 (Member # 14257) on :
Maybe those that relapse don't have a normal CD57 at completion of therapy? He also says some will need life long maintenance therapy.
So yeah, that line is confusing.
Anyway, I plan on making my husband read this as I've been trying to find something fairly brief and easy to read that gives him an understanding of what is needed with treatment and why as we tend to talk in circles about it which is frustrating for me b/c I've done the reading and research yet he has strong opinions on how I should be treating but they're based on....well, I don't know what they're based on. So, this will be very helpful. He has agreed to read Burrascano's guidelines at some point but this seems easier to read.
Posted by Runner17 (Member # 30272) on :
This is great! Thank you! Are they selling a DVD as a fundraiser? Anyone know how I could get a DVD?
Posted by beths (Member # 18864) on :
Confusing...he says not to lower dose as symptoms lessen. Some LLMD's, who are also well known, start to pulse. In fact, Dr J pulses all his pts to let the immune system kick in.
Some LLMD's do low and slow-and their patients respond.
I wish there was more research to back up "the right way"
Posted by bcb1200 (Member # 25745) on :
A few comments...remember that this is from his experience. I take the last line re "if you haven't relapsed in 3 years you never will" to mean if you have treated all 3 forms, have a high CD-57 and it has been 3 years since you finished treatment, you won't relapse. Sounds pretty good to me. This assumes you won't get rebitten.
The life long therapy are probably people who don't have good CD-57 upon completion or who continue to relapse within months / weeks of stopping treatment.
Regarding lower a dose...he means don't cut from 400mg to 200mg. That is different than pulsing 400mg off and on.
Posted by seekhelp (Member # 15067) on :
Outside of that one comment, this is good info. Thanks for sharing. Posted by seibertneurolyme (Member # 6416) on :
Thanks for posting Gary.
Regarding borna virus -- I recently looked up hubby's test results. He tested positive for this 6 different times -- the last time a new test was available which tested both IgG and IgM. Hubby was still positive for both after being on amantadine for 3 years.
Have not retested this for 3 or 4 years as there are currently no labs in the US which test for this.
We got an insurance windfall and this is one test we plan to do. Will send his blood off to Germany and see what the test shows. Hubby has not had any other antiviral treatment other than amantadine for 7 or 8 years now.
Bea Seibert
Posted by lindaca (Member # 23871) on :
Remember that this post is from someone's notes, and thus may not be 100% accurate. CALDA is supposed to make the audio of this event available at some point.
Posted by Haley (Member # 22008) on :
Thank you - have passed this on to my doctor.
Posted by 17hens (Member # 23747) on :
Thank you, Gary, this is great!
Posted by blinkie (Member # 14470) on :
I thought the talk was going to be about new, cutting-edge treatments??? That is not what I get from this.
I hope I'm not disappointed when I get my CD.
Posted by 4Seasons (Member # 14601) on :
I was at the talk and took notes as well. My notes are virtually identical to these. I too was disappointed that I wasn't hearing anything very "cutting-edge". One thing that I think is fairly new is Dr. B's belief that so many people will need IV treatment (sick over one year). My doc told me about this new thinking last summer and started me on IV as a result of Dr. B's research.
I heard him say that they really don't know what to do about biofilm yet. He mentioned a few possibilities like Banderol and Samento, but there is still much to be learned here.
A lot of promise in the area of XMRV research, but no idea how to treat it yet.
They said there might be a DVD, but definitely audio version of the talk.
I agree that what I heard was - if you finish treatment with a high CD 57 (over 120) and you maintain a healthy lifestyle and you don't relapse withing three years then you will not.
There are no notes for the panel discussion afterward. One thing that came up was sexual transmission and the treatment of asymptomatic partners who may be reinfecting the other partner. One panelist suggested treating to try and induce a herx and then treating. I mentioned this to my support group and it started quite a discussion. Any thoughts about that? Some thought that if the partner was asymptomatic, maybe using a condom was a better strategy.
One other piece that is missing in the notes was the CALDA director's introduction where she said not to interpret the lack of change in the IDSA guidelines last year as a failure. It was the first time that the IDSA was forced to allow the ILADS perspective be represented and that the IDSA spent over $1 million in legal fees. She sees this as a good first step.
Posted by seekhelp (Member # 15067) on :
So what did Dr. B recommend to diagnose methylation cycle issues? Any particular labs/tests? This seems huge if 75% of patients responded better after addressing it.
Also, what is all this talk about worms from him? lol. That seems new. It's going to make Gael a happy camper to hear this!
How do you even get Bornavirus?
I'm lost...
Posted by seekhelp (Member # 15067) on :
He says not to do aerobic exercise and people here say they are running miles a day. Hmmmm..
Also Biaxin seems like a huge part of any protocol. It makes me realize why I improve on it.
TF's famous LLMD says Babesia has 7 or 14 day cycles. Dr B says every 'few' days....who is right?
Where's he come up with this stuff if he doesn't even treat anymore?
Lastly, no mention of heavy metals. To him, is this not important? GiGi says it's the end all be all along with parasites. Who is correct?
What a tangled web Lyme/cos are.
Posted by chiquita incognita (Member # 30381) on :
There is a cd recording for sale of the entire panel discussion, for anybody who is interested. It's $45 (benefits California Lyme Disease Assoc.) and the number to call is 707-575-5180
Best wishes to everybody, CI
Posted by 4Seasons (Member # 14601) on :
Under the section on the XMRV virus it should say that 100%, not 1005, of Lyme patients who did not recover tested positive for XMRV. Also, I recall he said that the retrovirals listed, which are used for HIV/AIDS are NOT effective for XRMV.
He did not address diagnosing methylation cycle problems or mention heavy metals.
Posted by Rumigirl (Member # 15091) on :
Give the poor guy a break here! I know we are all anxious for the next thing that will make the difference. And I understand being disappointed that there wasn't a lot of new info. But don't beat up on Dr. B! He's worked tirelessly for decades for all of us.
No one dr can know everything and be equally good in all areas. Or say everything in one talk. But believe me, he knows plenty. It's just that no one has all the answers yet, unfortunately. and we have to piece things together from here and there. And hope for more and better research and info. It's such a "many-layered thing."
He didn't stop treating patients until they had been totally free of symptoms for at least 2 months, and until their CD57 was up. Many drs don't do that. And on top of that, the co's have increased in number and variety.
Posted by chiquita incognita (Member # 30381) on :
Do you know, reading through the notes, something really made me irked.
Okay friends, I am not a doctor and have to qualify that. This is just one layperson thinking out loud, and I could be wrong.
But it just seems to me, that if the immune system's cells are "down" with lyme then how can a patient get well?
What about bolstering the immune system, carefully targeting the exact immune cells? According to Buhner, this can be done, see his book. And please see my FDA-required disclaimer, below.
Okay, yes we have immune evasion going on. No I did not forget about this. The spirochetes are tricky, huh.
But again, and I am not an authority, I am just wondering....
If according to the book "Boosting Immunity" by Len Saputo MD and Nancy Faas MSW, the immune system does have a "memory" and (I am assuming) it recognizes the various forms the spirochetes took as they transformed, then wouldn't the spirochetes eventually run out of tricks? In other words, wouldn't the immune system "remember" The altered spirochetal forms and "lick" the critters? If it is healthy, that is?
Could it be that the spirochetes are outwitting the immune system, only because it is "down" to begin with? If the immune system was bolstered, wouldn't it at least have an easier time "remembering" the spirochetes in their many disguised forms?
Why is immune strengthening not addressed as standard fare, especially in lyme treatment? Am I wrong, that the spirochetes would be better dealt with by a stronger body? Perhaps there is something that I do not know about this?
Then also there is the question about biofilms. So glad to see that this is being addressed. That's one "phew" and one "thank you".
Why is this not more frequently addressed, in other circles?
What about digestive lining integrity? If Dr Mark Hyman and Dr Joseph Mercola both agree that the digestive lining (mucosa), its secretions, enzymes, activities and such...comprise 80% of the immune system and is the body's first line of defense....then what happens to the gut lining (and therefore immunity) during abx therapy?
This makes me mad, to be honest! Leaked particles floating in the bloodstream can invite a host of auto-immune-type reactions and these too can cause nervous system malaise. Not that lyme doesn't either, of course, but the point is that leaky gut will only add to this. Especially during herx's!
Just do a search about leaky gut syndrome on the web, or better yet read clinical nutritionist Elizabeth Lipski's excellent booklet about this potentially very serious disorder and you will begin to understand.
According to Lipksi, when the gut lining becomes inflamed or cell junctures part like microscopic cheesecloth, this allows part-digested food and toxins to leach into the capillaries which feed into the gut. The molecules float all over the blood to every tissue in the body, bacterial translocation can occur to any number of organs and contribute to organ failure (probably a rare event, we hope). Then the particles attach to cells in the body, which are mistaken as "non-self" by the immune system and hence, the attack of the body's own tissues by the confused immune system.
So now we get the low Natural Killer cells from lyme plus hyperactivity of the immune system too...the latter because of leaky gut, brought on by compromised digestive flora, food allergies, and some medications, according to Lipski.
Dr Leo Galland wrote an article about leaky gut and how the bile from the liver becomes toxic ,and thus it might even contribute to gallbladder and liver cancer. Yay (not). www.healthy.net/scr/Article.asp?Id=425
***I am not suggesting that abx should not be done and that is not my role to suggest. I am not a doctor. Further I would never want to argue against a person's get-well protocol, no way. Absolutely not. Of course the abx are necessary.***
I do want to suggest, however, that complimentary therapies alongside the mainstream may be necessary. Probiotics only being one very important part of this, just as we already know about. And many additional things to protect the gut lining, see Lipski's booklet, it's excellent, a short read, deeply educational and very inexpensive. About $6 as I recall, on Amazon's website. There are many solutions to this problem. See the booklet.
But there's more.
After all, so many patients relapse.
WHY?
Because the spirochetes hide out in the skin, joints, eyes and heart, writes Buhner in his book. And later on, these hidden buggers cause the relapse.
And guess what.
According to Buhner, certain herbs can deliver the abx to those exact areas where the spirochetes hide, ie the skin, eyes, heart and joints. (I am assuming that they dilate the capillaries to those areas, in a similar manner to the way ginkgo does).
Well by golly, if the herbs alongside abx can help patients so that they are less likely to relapse later on, *why not?!* make this standard part of treatment?
If the immune system is "down" and you have tricky spirochetes, please don't argue with me that a lowered immune system will do any better to fight the tricky brutes than one that is bolstered? Hello, where is the common sense in that?
Why isn't the gut lining being addressed by these physicians? WOuldn't it be smart do address this before lyme treatment even begins, to protect from excess toxicity during herxing?
What would happen to herx's if the gut lining was strong? What would happen if the liver was supported, and the kidneys and spleen ditto? Wouldn't we be able to better handle the die-off of these deadly bugs? Wouldn't we all suffer less? See books, resources, links here for further info about body system support: http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=105728;p=0
Not to say that there would be no herx's, there would be no suffering, but hey wouldn't we be stronger and better able to deal with it, if all the systems above were toned and primed?
What about detoxing heavy metals *prior to* lyme therapy so that the body could better deal with the herx's later on? Where is the common sense in treating lyme without doing all the above things first? Where is the common sense in doing heavy metal detox when there is a leaky gut and metals will enter the bloodstream? DUH? Where is the common sense in doing lyme treatment when the dead bugs will float all over our blood to each and every cell in the body (if there is leaky gut)?
Cutting edge? Smart?
Folks again I am thinking out loud. I do not know if my hypothesis would work.
But I would like to suggest this:
Let's please talk to our doctors. Let's grill them with questions.
Let's ask them if...
a) Building up the gut lining prior to detox and abx therapy would help herx's to be more mild, and protect our tissues from damage.
b) Strengthening immunity with herbs and supplements would give us a better chance to fight off the bugs. (Understanding that this is alongside lyme treatment therapy, of course, not in replacement of it).
c) Supporting and protecting the gut lining, liver, kidneys and spleen would help us to better deal with die-off symptoms.
NOTE: In no way is it being implied that anybody should stop their medications or abx, ever! Absolutely not! Never stop medications without your doctor's guidance, and once again that is not even being suggested here! Just want to make myself clear.
I could be wrong. It could be that to leave the immune system weak and debilitated miraculously enables us to fight the bugs. I could be wrong that strengthening it won't make a bit of difference because the bugs are so tricky.
Somehow I doubt it. I have a hunch that a stronger body will be better able to heal itself from the buggers.
Again I am not an authority, and am only thinking out loud. As a layperson, I want to say in conclusion:
This makes me MAD!!!
Good night everybody,
CI
The above information has not been evaluated by the FDA and is not intended to diagnose, cure or prevent any disease.
[ 03-31-2011, 05:35 AM: Message edited by: chiquita incognita ]
Posted by 5vforest (Member # 29365) on :
I am eternally grateful to Burrascano for his work on LD.
However, the notes from this conference just seem like a rehashing of his guidelines.
Posted by seekhelp (Member # 15067) on :
Really, what else could they be? He's not a physician anymore in a practicing sense so his 'new experience' came to a screaching halt in 2006. All info would be second hand via other physicians. It's like asking a retired football player what all the new plays are. I'm not trying to be mean...it's just truth.
It's too bad he doesn't put the boxing gloves back on and help patients who desperately need it!
quote:Originally posted by 5vforest: I am eternally grateful to Burrascano for his work on LD.
However, the notes from this conference just seem like a rehashing of his guidelines.
Posted by BackinStOlaf (Member # 23725) on :
what does this mean?
"spirochetes final hiding place is the skin"
Posted by BackinStOlaf (Member # 23725) on :
Also:
ENFORCED REST
You are NOT allowed to get tired Take a break before afternoon lag Work and school � Go in later, leave earlier, take a midday break, take Wednesdays off Rest on days off No caffeine, no stimulants Home should be quiet, comfortable, non-toxic Nap if needed!! If you need to sleep late, do it!!
Really not easy for me since I work full time in order to pay for my treatment
I'm sure my boss would LOVE if I asked to come in late and leave early etc... :/
Posted by tickled1 (Member # 14257) on :
CI,
I'll start off by saying I have no medical training and I know you do so bear with me.
Anyway, could it be that it may be difficult to strengthen the immune system while we have such a high bacterial load and that we need to kill some of the buggers off while detoxing before addressing the things you mentioned will be effective. Also, I think some are so sick that it's just not possible to delay treatment until those other areas are addressed.
I do know though that some people may test positive for Lyme but not show symptoms. Maybe it's b/c they have stronger immune systems. It probably becomes a much bigger deal in people that have weak immune systems to begin with whether it be from improper diet, lack of sleep or too much stress.
Also, I think there are a lot of LLMD's that cover all bases that you mentioned. Isn't that the whole idea of going to an ILADS LLMD over another doc? I've been to docs that are willing to prescribe long term abx but don't focus at all on suportive measures. That is why my next stop is an ILADS LLMD (actually LLND). So I hope all the things you mentioned are addressed.
Posted by tickled1 (Member # 14257) on :
backinstolaf,
BTW, I love your name and pic! Love Golden Girls!
Anyway, I think these docs tell us what they'd like to see us do best case scenario. One of my docs wants me doing nutritional IV's twice/wk. at $150 a pop! Not at all possible for me and she knows that but like she told me, she tells me all the things she thinks would truly benenfit me but understands it may not all be financially possible.
It all really stinks. That the things we need to do to make us better we can't do for financial reasons.
Posted by seibertneurolyme (Member # 6416) on :
Here is a previous link with notes from a talk given by Dr B in June 2010. Very similar to the notes here, but actually includes more details.
Bea Seibert
Posted by blinkie (Member # 14470) on :
Well, I'm just mad that I paid to hear "new, cutting-edge information" and this was jsut a rehash of what we already know and have known since 2008 guidelines.
BTW-I'm still waiting for my CD.
I love Dr B, don't get me worng...he's a lyme warrior and an asset to us all. I think I'm just ticked at how the thing was marketed.
Posted by tickled1 (Member # 14257) on :
Thanks Bea!
Posted by CherylSue (Member # 13077) on :
Did Dr. B say anthing else about about treating mycoplasma other than it was difficult? What meds did he suggest?
Anybody?
Thanks.
Posted by CherylSue (Member # 13077) on :
And....mycoplasma is made worse with exercise, yet exercise is good for Lyme. What to do?
Posted by Susie R (Member # 30780) on :
***heaving a big sigh********
How can this field have any answers when there are no controlled studies????
When major university medical centers aren't enrolling patients by hundreds into treatment groups so we can see outome studies?
I would settle for well-documented collaborative case studies from our top LLMD and NDs!!!
My son is so ill it scares me and I am furious about the state of treatment! Tonight it is so bad I just want to cry and cry and cry.
SR
Posted by momindeep (Member # 7618) on :
I agree 100% about gut health...I have talked about this before on other threads. My daughter did not have much improvement with any treatments until her doctors started to get her gut under control...and that was also addressing yeast and parasites too.
When that was addressed, THEN we saw benefit from treatments.
If you cannot absorb through the gut, then what is the use to anything? That is the FIRST line of defense...if the gut isn't working properly then logically, knowing what we know about what transpires in the gut, how can anything else be of help?
Posted by momindeep (Member # 7618) on :
Susie R...I am so sorry for you...I know EXACTLY how you feel and can totally sympathize.
I was a complete, beaten down, hopeless feeling, mess for a long, long, time watching my daughter suffer so.
There is hope for your son now. He has you to figure out what needs to be done and you have gotten him some wonderful help. It takes time...I know, I know...it seems so trite of me to say that...but I speak the truth. It will be okay...and as mothers...well, we don't/won't give up and we know how to kick butt if need be...it would just be nice to be able to sit on the sidelines for a short spell and take a breath.
Take care, Sue
Posted by BoxerMom (Member # 25251) on :
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