Having attended the Hope to Heal Lyme conference this past weekend, there was lots of good information shared. I just published my 22 pages of notes from the conference today. To find them:
I hope you find these useful.
Posted by ChrisBtheLymie (Member # 8916) on :
Scott, this is great. I look foward to reading through this tonight.
Thanks.
Posted by dontlikeliver (Member # 4749) on :
Excellent job, Scott!! I am just reading your notes now. Very comprehensive. I wish I could've gone, but I'm too far away, and two long-haul return flights to the US were just not possible in one month (going to see LLMD in 2 weeks).
Do you happen to have any insight into what the DNA being re-written by the Lyme means to us? Does it mean no matter how many abx or other tx we take, it will not matter as we are now effectively Borrelia-mutants?
Posted by 5dana8 (Member # 7935) on :
Thanks Scott
Great job with your notes.
I ordered the DVD but this was a treat to hear ahead of time the overview.
thanks for taking the time and the effort I really appreciate it Posted by SForsgren (Member # 7686) on :
The bugs incorporating into your DNA is likely a topic that will require more study. They did not mention much more beyond that. I would be interested as well if anyone else has further insights.
What they did say is that even with this possibility, people get well.
Posted by Lymeblue (Member # 6897) on :
Scott didn't you like the chicken fajitas at the end????? At least the service was very, but very fast....
Your notes are great!!!!!
Posted by seibertneurolyme (Member # 6416) on :
Scott,
Thanks so much for the time and effort you put into this.
Bea Seibert
Posted by SForsgren (Member # 7686) on :
Very welcome. I am glad that the information is useful. Information is power and I really do think we improve our odds by understanding and being our own healthcare advocates. Be well.
Posted by quaicheng (Member # 8392) on :
Good work Scott, extremely generos to the community of you to do this for us.
Burrittos, personally I'd be thrilled if they wer not on a Mx menu. Here there are a dozen taco wagons and tacorias that roll circles around the established restaraunts.
God forbid they could have had *WRAPS* on the menu (I have seen the on menus). What a blight on white peoples culinary accumen. Sorry, WRAPS have irritated me long before lyme. They are TORTILLA"S people!!
quai
Posted by humanbeing (Member # 8572) on :
Thank you Scott, Great information...
Posted by Nori (Member # 8983) on :
THANK YOU Scott - well done!!!!!
When in Virginia next time, try the crabcakes..
Posted by Porsche (Member # 7644) on :
Thanks Scott.
Did Dr K mention anything about yogurt, or homemade yogurt? There seems to be a wide difference of opinion on this. I was wondering what he thought about it.
Posted by JeffM (Member # 8919) on :
This is a fabulous resource, Scott. Extremely helpful information which I will bring to my doctor. Thank you for such a thorough and clear set of notes.
Posted by Dave6002 (Member # 9064) on :
It's a great job.
I never heard of a bacterial DNA could integrated into human DNA genome, cause it's too big, in the case of Bb, it is clos to 1 million base pairs.
So the integration may be just partial DNA, wich may not contribute a lot to its biology.
Posted by Dave6002 (Member # 9064) on :
One thing interesting in a interview is that the tick bite on the head is the most serious.
Because it is the closest to the brain. If the bite is on the toe, I bet it is the least serious. Why, too far away from the brain.
Bbs appear to first affect tissues or organs that are closest to the bites, like EM. Some studies suggested this.
One of my first symptom is muscle pain in my right arm. I speculated that the bite was on my right arm. The pain is still there. Thus the pain may not be neurological, rather may be resulted from Bb infections of the muscle cells. A shot directly on the muscle may kill Bb there easier.
So I guess the movement (or more accurate, the pathological establishment) of Bbs in the body probably is very slow.
What this mean for Lyme therapy? The Bb loads may decrease gradiently from the bite site.
So for IM injection, the inction site if is closer to the biting site may gives better results.
Posted by hatsnscarfs (Member # 6562) on :
Wow Scott, I don't know how you do it, many thanks. You've are a great asset to our Lyme community. I got detoured at the link for film donations and went over to paypal to send one. I'll head back now to read some more. hats
Posted by Andie333 (Member # 7370) on :
Scott,
You've done such a wonderful thing -- taking notes and ordering them so clearly and eloquently.
Thank you SO much for this and for everything you do.
Andie
Posted by robi (Member # 5547) on :
quote:Originally posted by Dave6002: One thing interesting in a interview is that the tick bite on the head is the most serious.
Because it is the closest to the brain. If the bite is on the toe, I bet it is the least serious. Why, too far away from the brain.
I was at the conference......... misssed this bit of info .... but then my bite was on the head .... guess hts proves the point.
Any other's here bit on the head?
robi
Posted by 5dana8 (Member # 7935) on :
Hi Scott
I didn't read anything in your notes and wondered
if any of the speakers had anything to say about
fatigue? Any new information on this topic?
Thanks dana
Posted by SForsgren (Member # 7686) on :
Nothing specific. I think it is just assumed most of us have it, and it improves with treatment. No specific treatments for fatigue that I recall.
Aside from the conference, I have read some good things about Corvalen of late.
Be well
Posted by efsd25 (Member # 2272) on :
Thanks Scott, you are awesome!!
Reading thru you notes, it is amazing that new information comes so slowly. Am always hoping for a breakthru....but it never happens. It is just slow, almost glacial progress against this disease.
I guess the good news is that it can be controlled.
Thanks again!!! Ernie
Posted by efsd25 (Member # 2272) on :
Thanks Scott, you are awesome!!
Reading thru you notes, it is amazing that new information comes so slowly. Am always hoping for a breakthru....but it never happens. It is just slow, almost glacial progress against this disease.
I guess the good news is that it can be controlled.
Thanks again!!! Ernie
Posted by pq (Member # 6886) on :
Scott,
Thanks for the considerable time and effort that went into this!
pq
Posted by psano (Member # 7785) on :
thank you for posting this, Scott. It took a lot of work, and I know it's helped me decide to buy the DVD's.
Posted by psano (Member # 7785) on :
thank you for posting this, Scott. It took a lot of work, and I know it's helped me decide to buy the DVD's.
Posted by SForsgren (Member # 7686) on :
All very welcome. I am glad that the notes are proving to be of some value. Be well.
Posted by valymemom (Member # 7076) on :
Scott
I just spent time reading and copying info since I could not be there this year. Thank you for all this info!
Posted by lymeout (Member # 8045) on :
Wow, Scott! What a wonderful job! I am so sorry that I didn't get to meet you and others on lymenet while there. There was so much going on and so little time. If you come next year, I will give you some restaurant suggestions! I'm glad you are doing well; and after this conference, I have more confidence that my daughter may get back on top of this.
Thank you for your very valuable contribution to this forum.
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by SForsgren: Having attended the Hope to Heal Lyme conference this past weekend, there was lots of good information shared. I just published my 22 pages of notes from the conference today. To find them:
Brest milk carries the disease - 100% proven. Posted by WildCondor (Member # 434) on :
Scott,
You are a shining example of what being pro-active is all about! Excellent work! It's so nice to see other sick patients working hard to gain information and help everybody else out in the process. Thank you so much! We can all do this, it just takes determination, patience, open mindedness and learning! We all HAVE TO arm ourselves with information to beat this disease. Keep up the great work Scott! Posted by Lymetoo (Member # 743) on :
up
Posted by SForsgren (Member # 7686) on :
Sorry for the typo. I'll get it updated next week. I am away at a Dr. K conference learning ART this weekend and don't have the source file here. Be well
Posted by mbroderick (Member # 5220) on :
Scott,
You did a fantastic job on the Lyme Conference notes! This is very much appreciated by all, I'm sure. In fact, Gail (pinchotgail) said that there was a guy in front of her with a laptop - typing the entire time! Glad that it was you!!!! You've really done a great service to the Lyme community with the information that you've gathered and posted on your website, as well.
Thanks!!!
Posted by hopeful4 (Member # 8486) on :
Scott, Thank you for writing this up, and posting it for all of us to read. It's a very helpful resource. I'm going to print this one out and save it as a resource!
I'm sure many of us have been interested in knowing what happened at the conference. Now we can read this and share it with others.
!!!!EXCELLENT JOB!!!! !!!!!APPLAUSE!!!!!
Posted by lymemomtooo (Member # 5396) on :
Scott, Thank you very much..It is great...lymemomtooo
Posted by gambler (Member # 8441) on :
Thank you for sharing your inforamtion with us. I bought the DVD's after reading your notes.
I refer to your website often, thank you for doing it.
Posted by klutzo (Member # 5701) on :
I would also like to thank you for posting your notes, I think.
They were very bad news for me, since I am allergic to all but one ABX which does not work on Borrelia, and I have life-threatening reactions to all quinine derivatives.
The consensus of the LLMD's there seemed to be that herbals, which is what I am using, are a death sentence. They did not actually say that, but they did say long-term ABX are an absolute necessity, and that not assuming and treating for multiple coinfections will result in no recovery, which IMO, amounts to the same thing.
It's always better to know the score though, so one can make informed decisions.
Thanks again for all your hard work.
Klutzo
Posted by robi (Member # 5547) on :
klutzo..... these guys are MD's thats what they know is ABX. And yes it probably is better if you can take the abx,BUT.......... there are others that have gotten better without ABX.
Rife, herbs, salt/c ...... you have to look into some of these. DO NOT LOSE HOPE. And I do not believe I am giving false hope here either.
Start reading otherlyme groups and see what folks are doing. They are getting better. ....
Hugs, robi
Posted by LymeDACnow (Member # 4649) on :
I met you at the conference, and this just reinforces what I said then... you are one amazing guy...and I am one (of many) appreciative people!
THANKS
Posted by nan (Member # 63) on :
Hi Scott,
We are lucky to have you in our midst! Superb job. Thank you.
Sorry you were unlucky to get slymed, though.
Posted by Lymetoo (Member # 743) on :
Thanks very much for the notes, Scott. I printed them out and am in the process of reading them.
Klutzo...Please try rife.
Posted by SForsgren (Member # 7686) on :
To be very clear, I agree with what other's posted here. This conference was more conventional with a focus on ABX. These are not the only options. Though, often they are needed as part of a Lyme treatment program. Rife, KMT, lots of different herbs, etc. are all useful for many.
These notes should not be taken as an indication that I believe this is the only or the correct approach. There are many different opinions and options.
Those reading my site know that I do many things not discussed here and am also a very big supporter of Dr. K but those concepts are not mentioned in these notes as he was not involved in this event. I have other notes on the site of his conference as well.
All presented for each person to be informed and decide their path to healing....
Be well
Posted by jwenny (Member # 8831) on :
Thanks Scott!!!
We are all proud of you ... excellent job!
Posted by timaca (Member # 6911) on :
Thanks, Scott, for taking the time to organize your notes and make them available to us.
On page 7, under Western Blot, band 89 is listed as a lyme specific band. Is this correct? Or did you mean band 93?
Thanks for the clarification....Timaca
Posted by Ann-OH (Member # 2020) on :
BRAVO!! And a standing Ovation!
I am in awe of all the intelligence and work it took to put this report together, Scott.
Brilliant!
Insightful!
And a whole boatload of other adjectives I will probably remember later.
Most of all....THANKS
Ann - OH
Posted by SForsgren (Member # 7686) on :
Yes, you are correct. There is an error in the bands listed. I will updated that as soon as I return from travel.
The correct information is listed in Dr. B's protocol as:
Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all.
Dr. J lists the bands as: 18 23 30 31 34 37 39 83 93
Thank you for pointing this out. I make every effort to ensure the information is accurate and appreciate your catching this typo. Be well.
Posted by BostonLyme2005 (Member # 7680) on :
Hi,
Thank you Scott, for your never ending, and devoted convictions to not only bettering your own health, but those of all of us as well!
Posted by SForsgren (Member # 7686) on :
Very welcome. Current version has the one typo in the WB band listing corrected as well. Be well.
Posted by WildCondor (Member # 434) on :
back to the top!
This is genious! Scott gets 5 gold stars and a panini for all your hard work! Posted by treepatrol (Member # 4117) on :
quote:Originally posted by SForsgren: Sorry for the typo. I'll get it updated next week. I am away at a Dr. K conference learning ART this weekend and don't have the source file here. Be well
Okay . You did a good job.
Posted by SForsgren (Member # 7686) on :
Thanks for all the kind words. I am glad that it has been helpful.
Posted by SForsgren (Member # 7686) on :
Glad the information has been so useful. The DVDs will be excellent for all as well.
Posted by SForsgren (Member # 7686) on :
![[Smile]](smile.gif)
I'll get it updated next week. I am away at a Dr. K conference learning ART this weekend and don't have the source file here. Be well ![[Cool]](cool.gif)