Just back home from NYC--it is after midnight. since i know i will be totally nonfunctional tomorrow, am writing a brief summary of major points while they are still fresh.
1. (round of applause)
Working on lyme activism/advocacy isn't an exercise in futility, and this Center's opening ranks way up there the hugest successes of Lyme activists so far.
The folks of Time for Lyme (with Pat Smith's backing) not only raised 4 MILLION dollars to open the Center, the Center was originally THEIR idea. Nine years of incredibly difficult work later, their idea is reality.
2. The Center is going to have access to some of the best minds in many applicable fields, including neurology and infectious diseases. DR. Fallon is heading up a genuinely multi-disciplinary research team.
3. Dr. Fallon's called for a truce in the Lyme wars, one based on opposing sides coming together to talk about their scientific differences so as to advance the research. He is hopeful the research itself will point the way (i'm leaving out commentary......)
4. A CDC poohbah was there, who commented repeatedly that the CDC wants to work with the Center and with Lyme advocacy groups too. (i'm leaving out the commentary).
5. to the science, as much of it as i could and can process.
-one significant focus will be do research on just what pathogens "deer ticks" carry in addition to Bb. From the research that has already been done by the first Fellow, turns out Bartenella is NOT typically one of those pathogens- it was found in fewer than 5 percent of the ticks studied ((taken from the tri-state area, i believe)).
what is novel is that the research is looking for and finding MANY kinds of bacteria, many of those "new" and thus uncategorized as yet. The trick will be to find them all, and then to identify which are pathogens and then which of the pathogens can be transmitted. there was talk of the possiblity of finding an entirely unknown as yet disease that can help explain why Lyme can resist tx/become chronic.
VERY cool research..
------
In the very mixed news department (IMO), there were reports on Fallon's study on tracking IV treatment with PET scans. (not saying that quite right- sorry).
the bottom line: yes, most subjects with demonstrable neurological Lyme DID improve with 10 weeks of IV (ceft).
The bad news is that at 24 weeks out (no more IV's after 10), all the cognitive progress was completely lost for all subjects. Some maintained their physical progress- and there was a VERY strong correlation between those who did and those with a C6 peptide marker.
PET scans found distinctive abnormal neural pathways in subjects (first time these pathways have been identified). IV therapy did NOT reverse those pathways.
The abnormal pathways correspond to hallmark Lyme symptoms. For example, one pathway (forgive layman's language)over-excites the parts of the brain that deal most specifically with perceptions of pain (thalamus, i think, and one other..)
Another pathway over-activates the brain region responsible for processing visual and auditory stimulation.
So, for the first time there is hope that further down the road it will be possible to predict possible severity of disease, and possibly, those with the best chance of recovery. (at least physically??)
--- in the Q and A period-
the panel was asked if Lyme is transmitted sexually or through other body fluids.
the answer- most likely NOT. there isn't the evidence to say yes even tentatively,and that method of transmission is considered unlikely.
Fallon specifically said that Bb is not communicated through breast milk.
Fallon also made clear he did not think that abx are the end-all-be- all, and taht it is certainly possible that positive response followed by fairly speedy relapse is highly suggestive of another process at work....(abx worked for inflammation, for example, not active Bb).
those were the some of the highlights. maybe Heiwa will report too? I looked for you, DLL and Vermont. even wore that ribbon in my hair- but did not see either of you- sure hope i didn't just plum miss you.. but that's possible..
dilly
Posted by MariaA (Member # 9128) on :
wow, thank you for writing this up!!!
Has there been any press coverage, and is there an official web site with transcripts or other info from the symposium?
Posted by heiwalove (Member # 6467) on :
hi dilly!
i think you got the gist of it.
they also talked about some really cool new possibilities in developing an accurate test.. though of course i can't for the life of me remember what any of them were.
it seemed they were definitely taking and agreeing upon some conservative viewpoints.. ie, Bb is transmitted ONLY through the bite of an ixodes tick. i was surprised to hear dr. fallon say lyme is NOT transmitted via breast milk.
it was really exciting to see so many people from so many different disciplines coming together, though. i have high hopes that the research embarked upon at the new center will start to put an end to all the craziness surrounding the lyme wars.
[ 02. May 2007, 04:36 PM: Message edited by: heiwalove ]
Posted by bettyg (Member # 6147) on :
thank you both fo your input! Posted by Tincup (Member # 5829) on :
Welcome back!
So nice to have first hand accounts of the event... and all the details!
And after the long trip.. I very much appreciate it. I know you must be exhausted!
I am sorry to have missed the opening. But I am excited that it finally happened!!! The folks responsible must be very proud.
Again.. thanks for the reports!!!
Posted by Robin123 (Member # 9197) on :
Thank you so much for the reports!! It must have been exciting to be there.
When you mention other infectious agents they might be looking for, people here talk about mycoplasmas as also possibly being involved in infections.
[ 01. May 2007, 04:17 AM: Message edited by: Robin123 ]
Posted by Kayda (Member # 10565) on :
Thanks for sharing your report. We need research and answers to help us win our fight against Lyme. I was saddened to see that after withdrawal of abx, all progress was lost.
We've got to find out what's going on and soon!
Kayda
Posted by Vermont_Lymie (Member # 9780) on :
Dilly ---
Thanks for the great report! You got all the important points. I was there and will add some additional comments later in the week.
I was interested when Dr. F said there were anecdotal reports of good results using IV Ig, and that he was interested in researching it for chronic lyme due to these reports.
I saw you! Sorry we did not have a chance to meet. At least, it was great to see you there, sitting 2 rows ahead of me with lyme green ribbon in your hair!
On a non-medical note from the opening:
I went stage right after the presentations to see if I could meet any lymenetters, and spoke instead with the LDA spokesperson, Mary McDonnell.
(Heather, sorry to miss you!)
In Mary, I think lyme disease has found a fantastic, bright, empathetic and very sensitive spokesperson who truly understands the many facets of this disease -- the medical complexities and current marginalization, the impacts on families, and the political contention and marginalization -- and is dedicated to helping.
She has a great way of communicating these points to the public, and I hope the lyme groups will find more ways to use her great talents as a spokesperson.
Posted by Vermont_Lymie (Member # 9780) on :
Hi Kayda,
My take on the presentations, as Dilly noted, is that all progress was not lost -- there seemed to be a difference in Dr. F's study between persistence of physical progress and neuro-cognitive progress, with the physical progress being longer lasting.
(Right dilly?)
Unfortunately, the progress in alleviating neuro-cognitive symptoms was not as long lasting in that study.
Which for me, dovetails my experience with abx treatment in the last nine months. I have made much physical progress -- less fatigue, improved lung capacity, less chest pains -- but my neuro-cognitive symptoms have not improved as much as my physical symptoms.
Posted by CaliforniaLyme (Member # 7136) on :
AWESOME to read!*))!* THANK YOU!!!
Yup, my first LLMD used IV IGG with some people and it helped a lot-!!!!!!!!!
Posted by sometimesdilly (Member # 9982) on :
just a few things to add. (to answer one question, I'm not sure if the symposium was recorded-)
- the researchers there seemed to concur and be excited about the potential use of C6 peptide in diagnostic testing. Immunetics research lab looked for C6 in the spinal fluid of all the subjects in Fallon's study.
Their results demonstrated that the C6 marker was 4 times better/more reliable than the ELISA.
-- for possible pain management. nocicceptive circuits (pain perception pathway) are affected by the disease. A surgical approach used for other diseases that affect this part of the brain may have some potential. Called DBS (not sure what the acronym stands for), it would involve putting in an implant tha would essentially redirect the electrical flow...
-- the Fellow looking for what all in NE ticks has found them to be a vector for Powassan virus .
-- i heard Dr. Fallon sound pretty intrigued by IV Ig too, Vermont...
Oh, and Vermont- I really regret not finding you. Were you sitting next to Dr. L? I didn't get the memo about stage right- went up to NY in the AM on Sat. I stayed for about 5 minutes afterwards and found Heiwa, but didn't have the energy to stay longer. 3 plus hours was a long time to sit still and concentrate!
Earlier, not being a TV watching kind of gal, I didn't recognize Mary MCDonald and didn't know who she was. She turned around at some point and waved in my direction- I held up my ribboned hair and she smiled and waved again. I thought- oh yay- it's Vermont! Boy was I surprised when she got up here and gave her speech. ))) ------
YES, she is an extremely powerful speaker. I actually cried listening to her. It is just so rare to hear someone who does not have Lyme speak so clearly and compellingly about the human dimension of having TBD-the emotional & social isolation, the loss of so much that is deeply personal and irreplaceable.
--- dilly
Posted by valymemom (Member # 7076) on :
Dilly, thank you for the summary. Now I need to do a search to gather more on the IV IG.
Posted by Foggy (Member # 1584) on :
Yes, the vision has become reality. Keep up the support! Posted by lymeout (Member # 8045) on :
What is IV IGG?
Posted by ElaineC (Member # 9857) on :
Thanks for reporting back on this. Let's hope we will finally get the answers we need!
Posted by Vermont_Lymie (Member # 9780) on :
Hi dilly! That is so funny. I was sitting in the same row as Dr. L, but about 5 seats to his right.
I saw you come in about 5 minutes after me, and recognized you right away from your hair ribbon!
And yes, I noticed that you and Mary were waving at each other! I have to say, that really impressed me and I thought -- well, of course, dilly knows everyone, including hollywood stars!
Sorry to miss you and Heiwa -- next time! It was a long 3 hour+ set of talks, inspiring but yes, tiring too. Thanks for the great notes here on it.
Posted by 5dana8 (Member # 7935) on :
Thanks so much Dilly
You did a wonderful job !
You must be tired so make sure to get lots of rest & take it easy for a while.
One quick question. If fallon doesn't think abx where the end all did he mention any other treatments instead of abx or in conjuction with abx?
Thanks for all your hard work & awesome notes Dana
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by sometimesdilly: Just back home from NYCin the Q and A period-
the panel was asked if Lyme is transmitted sexually or through other body fluids.
the answer- most likely NOT. there isn't the evidence to say yes even tentatively,and that method of transmission is considered unlikely.
Fallon specifically said that Bb is not communicated through breast milk.
Fallon also made clear he did not think that abx are the end-all-be- all, and taht it is certainly possible that positive response followed by fairly speedy relapse is highly suggestive of another process at work....(abx worked for inflammation, for example, not active Bb).
those were the some of the highlights. maybe Heiwa will report too? I looked for you, DLL and Vermont. even wore that ribbon in my hair- but did not see either of you- sure hope i didn't just plum miss you.. but that's possible..
dilly
Fallon specifically said that Bb is not communicated through breast milk.
Detection of Borrelia burgdorferi DNA by polymerase chain reaction in the urine and breast milk of patients with Lyme borreliosis.Schmidt BL, Aberer E, Stockenhuber C, Klade H, Breier F, Luger A. Ludwig Boltzmann Institute for Dermato-Venerological Serodiagnosis, University of Vienna, Austria.
Current laboratory diagnosis of Lyme borreliosis relies on tests for the detection of antibodies to Borrelia burgdorferi with known limitations. By using a simple extraction procedure for urine samples, B. burgdorferi DNA was amplified by a nested PCR with primers that target the specific part of the flagellin gene. To control possible inhibition of the enzyme (polymerase), a special assay using the same primers was developed. We examined 403 urine samples from 185 patients with skin manifestations of Lyme borreliosis. Before treatment, B. burgdorferi DNA was detected in 88 of 97 patients with Lyme borreliosis. After treatment, all but seven patients became nonreactive. Six of these seven persons suffered from intermittent migratory arthralgias or myalgias, and one from acrodermatitis chronica atrophicans. Two of 49 control patients with various dermatologic disorders and none out of 22 presumably healthy persons were reactive in the PCR. In addition to urine, breast milk from two lactating women with erythema migrans was tested and also found reactive. Borrelia burgdorferi DNA can be detected with high sensitivity (91%) by a nested PCR in urine of patients with Lyme borreliosis. In addition, this test can be a reliable marker for the efficacy of treatment.
PMID: 7648832 [PubMed - indexed for MEDLINE]
Posted by 5dana8 (Member # 7935) on :
Sorry Dilly
I forgot to ask one question re: the Fallon study~
Did he mention if the patients did oral followup after the 10 week IV abx?
Thanks again Dana
Posted by sometimesdilly (Member # 9982) on :
thanks for the thanks and you're welcome-- i was lucky to go and happy to share.
(Dana- they weren't given orals. the test was about effect of just IV.)
Fallon doesn't have the answer (yet?) to what might repalce abx or work in adjunct with, or whatever. there are too many variables on the table to even make an educated guess, and the research isn't there (yet).
he did list- extremely rapidly- some reasons why abx might fail--
- Bb is there, but is intracellular, in cyst form, etc- ie, able to resist detection (by known means).
- Bb is no longer active, but an autoimmune process has taken over (most likely in cases involving arthritis in those with an HLA genetic marker).
-- perhaps one or more co-infections exist- including ones that ae as yet unknown and unnamed.
-- perhaps the disease triggers other processes that do not respond to abx.
many possibilities, and tx choices are dependent on the answers.
Fallon didn't seem particularly enthusiastic about long term IV tx.... --- Tree-
i saw your citation. but I can't respond to it any more intelligently than i did to Dr' F's assertion.
Fallon acknowledged that some evidence of the bacteria had been found in breastmilk in the lab somewhere (possible DNA fragments you mentioned?, but that the existence of what was found did NOT indicate the pathogen itself had been transmitted.
He also seemed to be saying that even if it was established that a viable pathogen was transmitted (sometime in the future), what you'd also have to account for is whether or not it could stay viable in a baby's gut...
i don't know enough about the science to evaluate what he is saying. I definitely trust him to know what he is talking about. I spoke with him for hours during my neuro-pysch testing and follow up, and i know he is 100% Lyme patient friendly.
that said, i breast-fed my son for 3 1/2 years while I had Lyme. If I had listened to this symposium first and then had the chance to decide whether i would breastfeed again, the answer would be- I would NOT.
Even if the odds were a definite 95 percent that bfeeding with Lyme is harmless, I would never take even that small chance. Just my opinion.
back to napping...
dilly (vermont- that i would know hollywood stars- )
Posted by lalalu (Member # 10854) on :
Thanks for the informative posts. GREAT work.
Posted by treepatrol (Member # 4117) on :
Fallon acknowledged that some evidence of the bacteria had been found in breastmilk in the lab somewhere (possible DNA fragments you mentioned?, but that the existence of what was found did NOT indicate the pathogen itself had been transmitted.
He also seemed to be saying that even if it was established that a viable pathogen was transmitted (sometime in the future), what you'd also have to account for is whether or not it could stay viable in a baby's gut...example who said it had to even make it to the gut???
Iam deffinatly of the mind this disease needs more than one person working on it and they need to Systematicly go after this.
They need someone at least 3 of each who are trained in genetics,chemistry, pharmacology,pathogens,and 3 lay persons to read existing details on L-forms,coccoid, cysts,blebs,spirochetes pathogenic and not,Fungi,parasites, And put that all in a room and let them read all old & updated material then come out and figure out how to stop it.
Then there not retreading the same ole tire!!!
Read W.T. Harvey, MD, MS, MPH and Patricia Salvato, MD of Diversified Medical Practices in Houston, Texas recently published the article- Lyme disease: ancient engine of an unrecognized borreliosis pandemic. They were puzzled by the high number of patients testing positive for Lyme disease. Many of these patients presented with "established" criteria for Lyme disease, but others did not. The fact that southeastern Texas is a `non-endemic' region, and that many of the patients had no history of erythema migrans rash, led the doctors to question established methods for Lyme disease consideration. Careful reflection of published research leads them to conclude the following. First, the arthropod is not the exclusive vector of Lyme disease. In addition to ticks, Borrelia burgdorferi may be carried and transmitted by fleas, mosquitos, and mites. Second, Lyme disease is not exclusively vector-borne. Compelling evidence supports horizontal (sexual) and vertical (congenital) human to human transfer.
Other front-line physicians are arriving at the same conclusions. "Of the more than 5,000 children I've treated, 240 have been born with the disease," says Charles Ray Jones, MD. Dr. Jones, who is the world's leading pediatric specialist on Lyme Disease, says that about 90% of his practice is comprised of patients with the disease. He also states, "Twelve children who've been breast-fed have subsequently developed Lyme".
University of Wisconsin researchers state that dairy cattle and other food animals can be infected with B. burgdorferi and hence some raw foods of animal origin might be contaminated with the pathogen. Recent findings indicate that the pathogen may be transmitted orally to laboratory animals, without an arthropod vector. Thus, the possibility exists that Lyme disease can be a food infection
Citing limitations of laboratory tests for the detection of antibodies to Borrelia, a study was conducted in 1995 at the University of Vienna (Austria) for the detection of Borrelia. Utilizing polymerase chain reaction testing for DNA, Borrelia was found to be present in both the urine and breast milk of patients previously diagnosed with Lyme disease.A study conducted at the Sacramento (California) Medical Foundation Blood Center in 1989 states that there is evidence that the transmission of Borrelia is possible by blood transfusion. Furthermore, in 1990, a study by the Centers for Disease Control (CDC) in Atlanta, Georgia stated that the data demonstrates that Borrelia burgdorferi can survive the blood processing procedures normally applied to transfused blood in the USA.
Now all those people didnt get infected by Tick bites ? maybe fly, mites, fleas, swapping saliva? Sex breast milk? etc etc etc
We need to eliminate what vectors carry it!!!
We need to elimnate or define all borrelia abilities of procreation.
We need to eliminate what does not kill it.
We need to eliminate it. period
I know its pretty much a task for someone who understands how Gods creation works. Like some of the great scientists before that new evolution wasnt true. Evolution only happens in that particular species it dosent change me into frog then ape.
A spirochete is a spirochete.
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by lalalu: Thanks for the informative posts. GREAT work.
I forgot to thank you too!!! iam sorry
Thanks and do keep us informed sometimesdilly
Forgive me if I sounded like i was after you iam not.
I do want to here about all of it. shutting my mouth now Posted by Kayda (Member # 10565) on :
Hi Vermont-Lymie,
>>>My take on the presentations, as Dilly noted, is that all progress was not lost -- there seemed to be a difference in Dr. F's study between persistence of physical progress and neuro-cognitive progress, with the physical progress being longer lasting.
(Right dilly?)
Unfortunately, the progress in alleviating neuro-cognitive symptoms was not as long lasting in that study.
Which for me, dovetails my experience with abx treatment in the last nine months. I have made much physical progress -- less fatigue, improved lung capacity, less chest pains -- but my neuro-cognitive symptoms have not improved as much as my physical symptoms.
I am in the same boat with the neuro-cognitive problems not seeming to resolve. I can count on my fingers the number of days that the cognitive problems cleared up for some unknown reason. they didn't last though.
The neuro-cognitive are especially tough to deal with. Sometime I can't even think what the next step is and then carry it out.
I really hope we get some solid answers, soon. And, like someone else said, we need lots of experts in various field studying, researching and putting this all together. We just don't have definite answers about transmission, treatment or prevention.
Kayda
[ 01. May 2007, 03:55 PM: Message edited by: Kayda ]
Posted by PEACHY*PEACHY (Member # 11758) on :
Hello, everyone. I usually only come here to read the newest and latest treatments but this post made me so discourged, I was compelled to register so I could post a comment.
Thank you sometimesdilly for posting your notes on the conference. This is not intended to shoot the messenger, but I am just completly shocked at some of the statements Dr Fallon made in regard to the transmission of Lyme. We are passing this around just by casual contact! Wake up people! A spirochete is a spirochete. The work of Dr Lida Mattman is a good reference point for that statement. People with healthy immunce systems can handle a few spirochetes, and will not go to develop "Lyme Disease".
I was under the impression this new center was going to be huge stepping stone for the Lyme community, and it is so discouraging to hear such complete and utter falsehoods be told by such a prominent figure in the Lyme community. It just feels like one giant step back instead of going forward as intended with this center.
Why even be involved in activism is this is the same recyled BS that we and our critics are being told over and over again, by our leaders no doubt! No wonder we are not being taken seriously! Just heartbreaking...
peachy
Posted by lou (Member # 81) on :
Trying to figure out why bartonella was MORE common than lyme in a NJ tick survey, but this report suggests it isn't common.
Trying to figure out why the C6 test comes up negative for some people who test positive on other tests.
Trying to figure out why 10 weeks is anything more than an arbitrary figure settled on in the clinical study; don't think this is definitive for longterm treatment outcomes. You would have to then run an experiment with longer terms to know what the result would be; cannot extrapolate these results. That was the problem with the Klempner study (one of many problems actually). The point seems to be that the IV did help and that people did lose ground afterwards. This is what one would expect of a chronic infectious disease.
Who was the CDC poohbah? Name, title?
IVIG does not help everyone with lyme.
Posted by dmc (Member # 5102) on :
why is this post too wide for my computer screen?
Very difficult to read.
Now I feel like BettyG with her spacing posts. Posted by treepatrol (Member # 4117) on :
I think its Kayda 's post it has a long line in it?
Posted by Kayda (Member # 10565) on :
Sorry, everyone that my previous post widened everyone's. I edited the line and hopefully all will be back to normal. If not, let me know and I'll delete my post. Maybe there's a hidden character or something.
Kayda
Posted by 5dana8 (Member # 7935) on :
Thanks for answering my question Dilly
I wonder if the patients in the study where given flagel if that might have made a difference.
From my last 6 months course of IV, I would not be where I am today had I not done flagel & then tinne. And also treated for co-infections.
Lyme seems to be such a complex disease with so many variables. I personally don't feel just doing a study of just IV abx & nothing else is a fair way to evaluate weather long term IV abx works vs a short course. I have to say I am very depressed to hear this news.
Columbia opening is such wonderful news. Sorry to harp on the study but I had such high hopes for it.
Thanks again Dilly. Hope I didn't poo on your good news by talking so much about the study.
Blessings Dana
Posted by lymeout (Member # 8045) on :
Does anyone else get the impression that this center might provide the middle or common ground on which the two camps could perhaps open dialog and minds? It certainly sounds as though some of the reported findings support theories from the traditional community. The last thing I want to do is allow the prejudices I have built toward the traditional community to get in the way of anything they might have to offer that would help my daughter get better!
Posted by seibertneurolyme (Member # 6416) on :
Sometimesdilly -- Thanks for the report. A big THANK YOU to all who attended and all who have helped make this Research Center a reality.
On the other hand ...
Tree, Peachy and Lou -- I share your concerns. Very disappointing to read Dr Fallon's comments, but not unexpected that he would take the conservative view.
I think time will tell whether the money is available to do real meaningful research. The front line docs who actually treat patients often have more insight into tickborne illnesses than academic researchers.
As Lou has mentioned it is very difficult to design a clinical study that can control all the variables -- every researcher has preconceived ideas about the expected outcome of their research -- manipulation of data is also very easy to do.
My personal thoughts on the long term antibiotic study is that the Rocephin put the Lyme into cyst form and that it had reemerged between the end of the 10 weeks of antibiotics and the 24 week end of the study.
As for the C6 Peptide info, someone I respect very much on LymeNet told me they thought hubby would never be in remission until he started testing positive on antibody tests (he is consistently seronegative on many tests from many labs). If you are producing antibodies then your immune system is responding.
I personally don't buy the theory that antibiotics help because of an anti-inflammatory mechanism -- if that were all that was needed the NSAID's would have cured everyone here by now.
Would love to see some research that demonstrates effectiveness of CoQ10 and Resveratrol to mitigate the free radicals and quinoloinic acid. There are many other supplements as well such as pychnogenol, glutathione, prickly ash bark etc which can mitigate symptoms and improve cognitive function. "Damage control" is especially relevant to those with primarily neuro symptoms.
Intially I was upset to read Fallon's comments, but now that I have calmed down I can see that this just opens up the research to not be so narrowly focused on only antibiotics. As long as the Center is openminded then much can be accomplished.
Rereading some issues of the Public Health Alert today. Very encouraged to read description of the study being done by Dr B.
It is up to us as patients to make sure the Center stays on track and does not lose focus. Think it would be great if they had a Public Relations Liason or even a website that patients could use to share ideas and pass on research suggestions.
Bea Seibert
Posted by gambler (Member # 8441) on :
Okay, so I have been feeling badly, and I might have missed some things...
Who is Mary McDonald?
Why hasn't Fallon's study been published?
I thought the study involved SPECT scans, not PET scans? Is this a different study?
Why would a positive C6 peptide correlate with better improvement?
The neural pathway problem, can anyone expand on this?
Thank you for reports from the lecture, it is good to know any new research-- however depressing it may be.
gambler
Posted by Jellybelly (Member # 7142) on :
Wow, I'm glad it isn't just me. Again none of this has to do with the messenger, but the message is concerning.
Why would anyone say that Lyme which is a spirochete is not sexually trasnsmitted when it is a common understanding that syphillis another spirochete IS sexually transmitted.
And breast feeding?? These little ketes go everywhere, why not into the milk glands and on to the baby. What makes anyone think that some of these critters can't survive a little stomach acid, when they can survive everything else? Parasites and germs of all kinds manage to move on through making us very sick....or did I miss something.
Feels like we didn't move to far ahead if this was progress. Hopefully if nothing there will be communication between both camps to try and figure this out.
But thank you for going and posting what you heard.
Posted by sometimesdilly (Member # 9982) on :
not to worry- the messenger doesn't take any of the concerns expressed here personally.
about the reports relating to Fallon's study. I thought that SPECT scans were being used too, and wondered if I was missing something huge- like, was this research from a prior study that just doesn't sound familiar to me? but i don't think so.
I had the distinct feeling that the 10 week tx was understood to be arbitrary in the way that we would understand sufficient tx. - But related, I did not get the sense that the study was centered on proving or disproving the efficacy of IV treatment.
My impression was that the study was primarily intended to examine the efficacy of TOOLS such as the PET scan and the C6 marker in tracking treatment progress, etc.
IMO, Dr. Fallon is approaching the research in a way that will provide the best benefit for all those folks not yet infected but who will be. The Center is not setting about in an urgent way to find the "cure" for those of us already infected.
They are hoping to lay solid groundwork, on one track going back- way back- to the beginning- what diseases do ixo ticks carry? I mean, we don't even have an adequate diagnostic test- how fundamental is that...
I don't know how hopeful Dr Fallon is in reality that the Center and its reserch will serve as a force of mediation and reason in the lyme wars.
But it makes perfect sense to me that he would not want to have the Center be seen as taking sides- how conterproductive that would be! And in any case,yep, sure would be nice (theoretically) to have some of the other sides' funding flow to real research.
Bea- I agree with you that we should stay involved and that having a designated contact person we could actually REACH would be great. I suspect Pat Smith et al have already thought this part through.
The advocacy groups there made it perfectly clear to everyone there that their job was not done, and they no intention of going away and leaving anyone in peace. I think what Pat said, to paraphrase, is that they would be pacing in the corridors and peeking through lab windows to see what was going on...
Lou- about C6 test. dunno. Fallon did say that there was no correlation between neurological symptoms and abnormal neuron pathways and C6- the correlation was limited to physical symptoms and improvement and having that marker.
the CDC fello- C. Ben Beard, chief of Bacterial Zoonoses branch of the division of vector-borne diseases, CDC.
dilly
Posted by Tincup (Member # 5829) on :
It may help to remember this...
We can KNOW something.. but unless we can absolutely prove it in a scientific way.. we can't claim it is true.
Not without getting the stuffings kicked out of us.
I call it walking the duck line. Gotta do that in the "real world" the doctors live in.
Sad but true.
Posted by bettyg (Member # 6147) on :
"It is up to us as patients to make sure the Center stays on track and does not lose focus. Think it would be great if they had a Public Relations Liason or even a website that patients could use to share ideas and pass on research suggestions.
Bea Seibert "
bea, i'm 100% in favor of this! it's a MUST.
thanks to all for their words about this session.
i take it NOTHING MENTIONED ABOUT AUTOPSIES that they were going to get involved in! this i was very interested in!! thanks again ALL! BG Posted by Vermont_Lymie (Member # 9780) on :
Betty --
Actually, one new exciting development that they reported is that they are establishing a brain bank --
Yes, so they are not only considering autopsies, but when possible (I guess this is when people donate in their wills their organs, here specifically their brains),
The Columbia research center will actually collect the BRAINS of people with alzheimers, etc., for researchers to study!
Frankly, from my side, I hope to live many more decades -- but they can have my brain when I am done with it! Hopefully though, there will be much better treatment modalities by then, though I am sure that the Columbia center will still be open several decades into the future!
Posted by valymemom (Member # 7076) on :
Right now my mind can not hold all of the information shared and all the comments made.......but after being a patient of Dr. B.'s for 18 months (my son, that is, made no progress) & we were told by Dr. B. to look into heavy metals with the next doctor as a contributing factor to my son not responding.
My llmd said that what eliminated their own brain fog was the removal of amalgams.
So much research to be done.
Posted by sometimesdilly (Member # 9982) on :
i saw my llmd the day before i went to the symposium.
i asked him these questions:
why haven't i made any progress in the past year? answer: I don't know.
the couple of weeks when the fog lifted- could that have been unrelated to the abx? answer: maybe. maybe not. i don't know.
is it looking like i have co-infections other than babesia? answer: the tests don't indicate other con-infections. but then, the tests are unreliable.
And the llmd answering these questions is one of the best, with the longest experience. So much basic research is required to move the mountain of unknowns.
One conclusion I come to is fellow Lyme/TBD sufferers sharing different views about what has worked and what may have worked and what is at least helping with symptoms is absolutely one of the most valuable resources we have going for us.
Thanks.
dilly
Posted by CaliforniaLyme (Member # 7136) on :
Lou, nope, IV IGG does NOT help everyone with Lyme, like everything else, it helps *some* people!!!!!!!!! My first LLMD used it to treat Immuno Related fertility Disorders (non Lyme related) so was familiar with it and had lots of it around- so he began trying it with Lymies who have specific Immuno-Related problems- only a few Lymies here and there- but it helped them!!! NEVER w/o abx as well!!!!!!!!
Whoever asked, IV IGG is IntraVenous Immuno Gamma Globulin!!!!!!!!!!
Posted by sometimesdilly (Member # 9982) on :
Sarah-
My ignorance about IV IGG is complete. Do you know WHY it may have helped who it did? what is the principal of the thing?
thanks- dilly
Posted by valymemom (Member # 7076) on :
We are one another's source of strength and we do offer hope to one another.
I told my son's llmd recently that his TMJ was babs related and he said he did not know that. I told him so many folks here said their TMJ left with babs treatment.
I also told my other son's llmd that the sudden return and intensity of symptoms that came on my son (when he missed three doses) of mepron/meds was an indicator of babs. I learned from you all that lyme symptoms resurface more slowly and babs quickly.
I learned this from reading all the many threads about babs.
A thank you to each and everyone here!
We need the research.....but the sick are really helped by the people to people emails and discussion here.
Posted by sometimesdilly (Member # 9982) on :
thanks for your reply elsewhere about iIGG, CALyme!
dilly
Posted by JeffM (Member # 8919) on :
thanks for reporting back
it's bad news for me though
just finished 7 months of rocephin, it really cleared up all neuro stuff, and just this last week i realize i am relapsing
rats
on to Plan B.
or it is more like Plan G . . .
Posted by sometimesdilly (Member # 9982) on :
Jeff-
i'm really sorry to hear you're losing ground. i can't imagine how frustrating and more that must feel after having some of the neuro burden lifted from you for awhile.
believe me, i came away from the symposium feeling rather pessimistic about the odds for my recovery. i had thought of IV as the last ditch but will probably do the trick abx route to go, and was planning on going with it in the fall.
I'm not sure now about doing IV's. But that isn't because of Fallon's research. I think what others have said here is really valid. What can 10 weeks on anything prove? not much, at least in my experience. And it wasn't in any case the point of Fallon's research.
what i've realized, from my own experience and from listening/reading about others' is that at least for some of us with chronic neuroLyme, abx alone simply aren't going to do the trick.
The next step for me is to try to regain as much physical health as I can, through diet, supplements, exercise, yoga.. whatever it takes. The mind and body are inseparable. I figure if i can't work on the brain directly, i'll try to give it as much help as possible from the bottom up, so to speak.
To plan G indeed- or to T, even Y. When only plan Z is left, then we are in trouble. But that ain't coming soon, so battle on.
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