Was anything new about the "mystery bug" revealed?
[ 03-29-2009, 03:18 PM: Message edited by: adamm ]
Posted by bettyg (Member # 6147) on :
arizona's dr. f's presentation where??
remember LLMD NAMES NOT PERMITTED, so please edit it showing other info by clicking on pencil to edit it out of subject line.
adam we need much more info than what you left ok
[ 03-30-2009, 01:24 AM: Message edited by: bettyg ]
Posted by aiden424 (Member # 7633) on :
Anyone? I was also wondering what the other speakers had to say too.
Posted by Lymetoo (Member # 743) on :
Where and when? Just wondering!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by bettyg: [QB] ***'s presentation where??
remember LLMD NAMES NOT PERMITTED, so please edit it showing other info by clicking on pencil to edit it out of subject line.
You chided him for using the name and then used it yourself???????
Posted by joe-nm (Member # 18054) on :
I saw Dr F. last week - he's my doctor. He said he was going to make the presentation and he is cloning the DNA of the organism.
He also - I think - related that he believes it is a protazoa? Don't quote me on this because it was my first visit. He is a VERY nice person and truly trying to help people suffering from Lyme and co-infections.
This is all I know about the presentation.
Posted by just don (Member # 1129) on :
Lymetoo,
when you catch someone such as betty in an OOPS moment,,,do you pass her your imocons ,,,or does she have to get some of her own???
Posted by bettyg (Member # 6147) on :
tutu, you caught me red-handed and embarrassed; corrected!
Posted by frickla (Member # 9818) on :
That was it? Cloning the organism? What is it? Bacterial, parasite, treatment options? Anything from this conference? Is there a published paper yet? Any substantial information?
Posted by seibertneurolyme (Member # 6416) on :
Very discouraging news. Spoke to the F lab today. At this point anyway they are not releasing any new info to the public. Said they are still working on a new test that may be available "soon" -- couldn't pin them down anymore than that.
Also said that rumor that they were using arginine to culture or grow the bug is incorrect.
Would not say with certainty whether it is a protozoa or a bacteria.
Looks like I will go back to experimenting with more herbs on hubby -- his LLMD appointment is this week and I am sure we will have the same outcome as last month -- just keep doing what you are doing until we have more info from the labs -- Fry or Clongen.
Bea Seibert
Posted by kelmo (Member # 8797) on :
He will be back in the office wednesay, and my daughter's appointment is late in that day. We'll see what he says.
Posted by cantgiveupyet (Member # 8165) on :
Thanks Bea for the update and contacting the lab. It is disappointing and frustrating. Maybe, your husbands LLMD will have more info...I would think they would have access to what was discussed at the conference.
Kelmo- I hope your daughter's appointment goes well. Thanks for keeping us posted.
Posted by seekhelp (Member # 15067) on :
If it's a breakthrough, how frustrating to let so many sick people suffer needlessly. One thing is kind of ironic. JamesCase20 is chastized for not releasing the name of the substance due to wanting to patent a process. Endless responses about how bad it is to let those suffer.
When it's a lab, all is OK. I understand recoup expenses and such, but the principle remains the same...human suffering. It really all depends on how relevant the finding is and how good the treatment protocol is.
Posted by MariaA (Member # 9128) on :
well, it may be that they thought they had something, and now are realizing it's not as big of a breakthrough as they thought. Or that the rumor that he was going to say something groundbreaking at the conference was just that, a rumor.
It seemed like there was some buzz on the boards to the effect that Dr F switched all of his patients who had 'the mystery bug' to another drug combo- maybe they're waiting to see if that still causes the improvements they thought they were seeing?
It's certainly causing rumors. Let's remember that some of them might be wrong.
Posted by nomoremuscles (Member # 9560) on :
Hi Maria,
I may be having an extra slow day today, but I read your post above three times and still can't understand what you're saying. I put the most difficult -- for me -- quote below. Thanks.
Are you saying the patients *were* improving, and, for some reason, he switched to another combo?
Or that they weren't improving and he switched them, and is now waiting to see if they do improve?
Or something else entirely?
"It seemed like there was some buzz on the boards to the effect that Dr F switched all of his patients who had 'the mystery bug' to another drug combo- maybe they're waiting to see if that still causes the improvements they thought they were seeing?"
Posted by Lymetoo (Member # 743) on :
don... not sure what you meant... but you made me laugh anyway!! Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lymetoo: Where and when? Just wondering! [/QB]
Posted by MariaA (Member # 9128) on :
Somewhere, I thought here, but maybe it was on chat, I heard that Dr F switched a bunch of patients onto a different drug combo.
This was made to sound like it was because he'd figured out that something else worked better than mepron/etc.
I don't really have more info than that.
Posted by feelfit (Member # 12770) on :
this past weekend...fri and sat. in MO. Dr. R of KC was the head of this conference. The Female DR. R that Byron S Bell was seeing.
I think that I got that right.
Posted by cantgiveupyet (Member # 8165) on :
Yes feelfit you are correct. Is Byron still seeing this LLMD?
Lymetoo- I think Don was refrencing that emoticon that you have in your signature where they drop there 'drawers' and say oops....he was wondering if you let Betty have that when you catch her making an 'oops' ;-)
Posted by feelfit (Member # 12770) on :
don't know. byron was banned. Posted by kelmo (Member # 8797) on :
Seek...what makes you think Dr. F is making people suffer needlessly? That's assuming a lot.
When we were in there last month. He said he and the lab guys were fine tuning the PCR/DNA testing.
We saw a little of his presentation in his office. I won't do justice to try to repeat it, but I think I've talked about it on another thread.
Maria, no one said that it wasn't a breakthrough. I believe it is. But, when he looked at my daughter and said, "this is a cure, aren't you excited?" We just said, we were too tired to get excited.
He has highly trained lab guys working alongside of him, and they are doing handsprings over the potential of this research.
He said that next time my daughter came in, they would draw blood and DNA her specific protozoa to tailor a protocol specific to that organism.
She will see him on Wednesday, his first day back from the conference. Then, I'm sure we will have to wait for the results of that.
The wait isn't meant for us to suffer some more, that's just part of the testing.
In the meantime, he has everyone on an anti-parasitic to keep things under control. My daughter is on mino and plaquinil. He has most on biaxin/plaq, or zith/mepron.
If he really wanted to keep people suffering, he could shut down his lab and not do ANY research.
I wish Byron were here. I miss him. He shouldn't have been banned, he needed us.
Posted by kelmo (Member # 8797) on :
In addition: This doesn't mean you won't be treating all the other infections such as borrelia, babesia, bartonella, etc.
But for those of us, like my daughter, who have been on abx for three years, have seen improvement, but have one thing that is just keeping them chronic, it could be this protozoa, which appeared to be bartonella-like.
It has a flagella, which could explain band 41. My daughter only has band 41 left on her WB. Her ANA is now negative, her sed rate is down to 3, and band 30 is now negative.
I only have band 41, but I'm affected differently.
That's the problem with this protozoa. It affects everyone differently, but his lab has found it in every one of his chronic patients: ALS, MS, Lyme, CFS/FMS, Autism, Parkinsons, et al.
Posted by feelfit (Member # 12770) on :
Wow Kelmo,
I am excited!!!! I tested positive via FRY and am sitting on the edge of my seat after reading your post.
I will anxiously await your update on Wed.
I too miss Byron. I think he was totally innocent (unaware) that his post was against rules. And that just stinks cause he was just trying to be helpful.
Feelfit
Posted by Hoosiers51 (Member # 15759) on :
One member of Lyme Friends who was at the conference was on Lyme Chat late last night, and she gave us a little bit of helpful info.
(I hope it's okay that I am posting this here....I'm assuming since she was at the conference anything they presented is open for discussion. If anyone objects to my posting it here, let me know)
She did say that the powerpoint slides from the presentation could not be posted on Lymenet because they are copyrighted.
Understandably, she could not answer all our questions in great detail, but she did say that biofilms are important to keep in mind (and I believe she was speaking about the "mystery bug.") She said one drug that Dr. F mentioned (I believe...note that this info could be incorrect) was Tindamax.
However, as kelmo has mentioned, more testing will reveal more about which drugs will work for certain individuals. So, Tindamax is just one of many possibilites, from what we seem to know right now. Note, I am only repeating second-hand information.
Since Plaquenil has been mentioned as well by Dr. F for quite some time, I think that is probably another drug that can be used in one of the many combinations against this mystery bug.
Another topic she brought up was hypercoagulation. She said treating this is VERY important. I think this topic was more for people with Lyme in general (as opposed to talk of the mystery bug), but once again, don't quote me on that.
She said heparin was good, and so is lumbrokinase. She said paying attention to hypercoagulation is important.
Hope this info helps some. I know it's not a lot, but it's everything that was mentioned last night that I wrote down.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by feelfit: this past weekend...fri and sat. in MO. Dr. R of KC was the head of this conference. The Female DR. R that Byron S Bell was seeing.
I think that I got that right. [/qb]
Thanks!
Is that past tense for Byron?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by cantgiveupyet:
Lymetoo- I think Don was refrencing that emoticon that you have in your signature where they drop there 'drawers' and say oops....he was wondering if you let Betty have that when you catch her making an 'oops' ;-) [/QB]
Thanks for the clarification.
Nope. No one touches my toot toot!!
Byron was banned?? HUH? Wondered where he went!!!
Posted by Hoosiers51 (Member # 15759) on :
Note: the drugs I mentioned may not work for everyone....it sounds like more testing is necessary to determine what we will need to take. I'm just letting you all know that apparently Tindamax was ONE of the ones mentioned, according to someone who was at the conference.
Posted by Lymetoo (Member # 743) on :
Hoosiers.... name police here again... DR's name!!! Posted by Hoosiers51 (Member # 15759) on :
Sorry! Fixed it! Posted by NMN (Member # 11007) on :
Can Someone PM me how much the smear for this BLO costs. I can't seem to find it on the website. Thanks
Posted by cantgiveupyet (Member # 8165) on :
Thanks again Kelmo!
Thanks Hoosiers for the info....much appreciated!
I didnt know Byron was banned either ;-/
Doesnt plaquenil and tindimax work on protozoa?
Posted by kelmo (Member # 8797) on :
When we were in his office last month, he mentioned three or for medications I had NEVER heard of before, so I think they are very narrow spectrum.
Posted by nomoremuscles (Member # 9560) on :
Maria,
Thanks for clarifying.
Posted by map1131 (Member # 2022) on :
Bryon was banned for attaching url that was a site for selling some type treatment. Alternative stuff, I believe.
He had a friend that was inquiring about why he was being banned? This all happened about 4 mths ago.
He was posting some about his doc and treatment protocols. This url must of been something he was using. I didn't get the impression he was selling. But maybe so????
Pam
Posted by aiden424 (Member # 7633) on :
Wow I'm sorry to hear Bryon was banned. I was interested in how his treatment turned out!!
Posted by kelmo (Member # 8797) on :
He wasn't selling. He is just young and wanted to give someone information.
Posted by tickbattler (Member # 14873) on :
LynnAnn -
Thanks...that is exciting. Were you there? How did you get this info? Are the tests available now?
Thanks! tickbattler
Posted by Lymetoo (Member # 743) on :
Does anyone know whether Byron is still seeing Dr R???
Posted by feelfit (Member # 12770) on :
Don't know TuTu, he was when he was banned. Anyone else have contact with Byron?
Posted by cantgiveupyet (Member # 8165) on :
Anyone see the meds Lynnann posted....I was off the site when she posted :-/
Posted by METALLlC BLUE (Member # 6628) on :
Excellent, this news is important. This combination of drugs is not commonly given. Has anyone here with a positive slide from Fry used these medications? What were the results. Those with a positive slide who have not felt better, which medications have you used?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by LynnAnn: Sorry.. Here it is .Would you guys cut and paste it.
HUH??
Posted by cantgiveupyet (Member # 8165) on :
Copy and pasting for LynnAnn- I dont think she can stick around.
Sorry.. Here it is .Would you guys cut and paste it. I can not stick around. Sorry
There is a new tests for the protozoan bug and an option for treatment includes a combination of Pyrimethamine Leucovorin and Sulfadiazine medications
Posted by adamm (Member # 11910) on :
So it's basically treated the same way toxoplasmosis is, then?
Posted by Lymetoo (Member # 743) on :
OH, I got it. I didn't see what in the world she was talking about. It was so brief !!
DUH me!
Posted by bettyg (Member # 6147) on :
she posted more about it in another thread...
Posted by AliG (Member # 9734) on :
where?
Posted by METALLlC BLUE (Member # 6628) on :
BSB - Banned without warning?! Was he really banned or just given time out for investigation? I've seen that happen before.
I would have thought that he would have first been reminded that it wasn't allowed, after all he IS a Lymie too & sometimes we get confused or forgetful.
I can't really comment on it though, because I don't know what happened and I didn't see it.
I hate to see people getting banned. Posted by AliG (Member # 9734) on :
PS - Thanks LynnAnn and Thanks Kelmo for the valuable input!
![[Smile]](smile.gif)
![[Big Grin]](biggrin.gif)
![[confused]](graemlins/confused.gif)
![[lol]](graemlins/lol.gif)
![[Razz]](tongue.gif)
![[kiss]](graemlins/kissing.gif)
![[Frown]](frown.gif)
![[group hug]](graemlins/grouphug.gif)