Topic: University of New Haven Conference...New Notes!
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
The conference today was excellent and jam packed with information. My head is spinning. I will post key points tomorrow under separate headings by the medical topic.
Can I use the doctors' names in reference to their presentations? And there were some exciting political announcements too that referenced one doctor in particular, but without being able to use his name it's going to be hard to share them. Of course everyone will know who he is anyway and we have always used his name before in reference to his legal proceedings, so has that changed?
Just want to be up to speed when I start posting what was presented today. Of course it was all public information! It is all on CD and can be purchased, so nothing is protected or confidential.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
posted
I'm curious too about it being contagious. I'd sure hate to pass this horrible disease on to anyone.
What bothers me is I had surgery way back when - could I have gotten this from a blood transfusion during surgery?
At this point it really doesn't matter where I got it from but surely do not want to spread this around.
-------------------- I am not a doctor and am only expressing my opinions...please do not take this as medical advice. Posts: 44 | From US | Registered: Jun 2009
| IP: Logged |
posted
Thanks tracy. Looking forward to your report and info on how to get the CD.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
For info on how to get the CD: Send $10.00 (which includes shipping)payable to the University of New Haven to:
Eva Sapi Ph.D. Associate Professor and Research Scholar Director of Lyme Disease Research Department of Biology and Environmental Sciences University of New Haven, Dodds Hall #314 300 Boston Post Road West Haven, CT 06516
If someone could post what the speakers talked about, that would be of interest to me. The speakers are listed here: http://www.newhaven.edu/unh/lyme/ but it does not say what each speaker spoke about.
Thanks, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
Can someone please anser her question on whether she can post the Dr's names that gave the presentations?
Posts: 453 | From TX | Registered: Aug 2008
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
When it comes to hope....it was very disheartening when one of the scientists showed an actual video of darkfield microscopy where he poured bleach on a cystic form of lyme and thirty minutes later, though the cyst had "busted" alright, there were still live spirochetes squiggling around.
That was quite upsetting to see.
I slept all day today recovering from yesterday but will get some info up tomorrow. There was a huge diversity of information presented; should we keep it all on this thread or post it by topic?
One quick thing; they said Rife is good for maintaining but NOT curative.
They also recommended Magnesium not be taken orally but be absorbed through the skin through Magnesium oil and Espom salt baths; it had something to do with it not getting past the biofilms but I'm not exactly sure of the reason. I need to pop in my CD and review the presentations.
Also I bought another copy of the CD from 2 years ago, which I highly recommend if you are going to buy this years, you buy that one too. For ten bucks, you get presentations that are priceless by Dr. Alan McDonald, Dr. Horowitz, Dr. Phillips, Dr. Sapi, Dr. Leo Shea on Neuropsychology, Dr. Burrascano, and more....you cannot even begin to put a value on them. I hvae referred to them over and over and bought a second CD just to have it!!!! Best ten bucks you will EVER spend. So for $20, you will get complete powerpoint presentations from both the 2008 and 2010 conferences from all these top LLMDs and researchers.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
BTW, I am just reporting what was said, it is not my personal opinion, so please don't start a big debate about Rife or anything else. This was the opinion of the presenter(s), doesn't mean it is the absolute truth. There are many differing opinions amongst our best and brightest!
There was an overwhelming amount of scientific research presented in the morning, a lot of which was over my head. Again, I highly recommend you buy the CD and get the powerpoint presentations, especially if you are a brainiac.
I do know I felt overwhelmed and discouraged after seeing slides like "The Perfect Storm" and recognizing that I fit it and then some. I also felt saddened that I needed to stay in the back of the lecture hall and lay on the floor with a pillow through most of the conference, as it was impossible for me to even sit upright through the day.
Two years ago, at least I was able to sit through most of the day. Two years ago I hadn't been diagnosed with an autoimmune disease. I saw myself looking pretty hopeless as I approach six years in treatment and face the fact that each year, I am only worse and worse and lose more and more functioning.
So, the bottom line is they gave the message that they are diligently working away on research but there are not any answers yet. None. No one has a cure for anything. That message came across over and over and I have never heard it more loudly and clearly.
Correct me if I'm wrong, others who were there. I am not usually negative....and I don't mean to be now. I felt the presenters had almost reached a point of; "Hey, let's take off the rose colored glasses and just call a spade a spade. We have all this great research and we are going to keep at it but ya know what? We don't have a single answer yet."
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
onbam
Unregistered
posted
Thanks, Tracy.
Exactly what I was expecting. I doubt that it could be cured before the poisoners fall.
IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
OH, I just read this in another thread and it explains exactly why you aren't supposed to take Magnesium orally:
The biofilm matrix has a horizontal and a vertical weave. It's standard knowledge that biofilm bacteria sequester calcium, magnesium and iron to help build that matrix.
It FEEDS the biofilms. That is why Dr. W said to only get it through Epsom salts and topical oil.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Here's the conference program...this way you'll know if you are interested in purchasing the CD.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Report from conference attendee...
A few folks have contacted me to ask me about the U of New Haven conference last Saturday. I can tell you that it was fabulous.
Some new and exciting info about the biology of Lyme - from biologists and one physicist who made the material very comprehensible.
One showed a video of the organism changing forms, which seemed to me to verify the reality of cyst forms and nearly do the same for biofilms.
Judith M's presentation on Alzheimer's, inflammation and spirochetes was fascinating and more.
Eva Sapi is leading a great group of young researchers and they are doing some cutting edge work.
She has been in touch with Judy Mit.. and is working with her to examine ticks for the possibility that they may carry XMRV.
It reminds me of the Australian researchers who discovered that ulcers are caused by bacteria and not by stress, debunking the prevailing dogma.
Hopefully, these off-the-beaten path institutions will play a vital role in "outing" the truth about tickborne diseases.
The morning sessions were largely research-oriented, the afternoon clinical and focused on pediatric issues.
Interesting, with lots of info from Dr. W on integrative approaches and from Dr. L on neuropsych issues.
Pat Smith of the LDA and Sandy Berenbaum, LICSW, gave great talks about advocacy and the psychosocial impact on children/students and the family, each from their own perspectives and experience base.
The information on homeschooling was well received, I thought, as one possible option for educating students with Lyme.
Dr. J looked well - very spiffy in a new suit, which he opted for (thanks to strong-arming from his wonderful office manager), instead of his customary running suit.
He gave an inspiring keynote in the morning. Advocates working in the exhibition hall managed to collect over $1200 for his legal defense fund from the sale of t-shirts, books, bracelets, donations, etc. - largely thanks to Donna and Denise from her group, who helped to coordinate that effort, along with Karen from Connecticut.
CT Rep. Jason Bartlett came to address the group and boldly stated that he was going to do something about the mistreatment of Dr. Jones in that state - let's hope he prevails!
The audience was an interesting mix of professionals, advocates and patients. I'm sorry for all who couldn't make it - it was an inspiring, exciting and somehow comforting day.
There will be a CD available for sale. It may also be streamed - I'm not sure what came of that.
This summary is far from complete. Perhaps others who attended will want to add their own comments to what I've written about the conference.
posted
Please do not use the doctor's names. Presenting at a Lyme conference does not mean they are out in public, IMHO.
At least one of them, Dr. W, is still treating patients.
Posts: 984 | From US | Registered: Dec 2007
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Got more reports.. folks (including docs) calling from NY and CT reporting back on the conference... and the excitement is something else!
Notes I took during conversations already this morning...
1. Approx 200 people there.
2. "REALLY good" and "good energy too"!
3. Very supportive of Dr. Jones.
4. "Excellent research work". Dr. Sapi and her - I like this... cause it is true too- "polite", "helpful- very helpful", "gracious and brilliant" students ... have been doing GREAT work on "antibiotics in vitro".
5. Cowden appears to be getting at biofilms.
6. Sandy and Pat did "their usual" powerful presentations.
7. People there from CA, FL, Canada, many from Mass and RI.
8. Someone there from AG's office.
9. Jason Bartlett- CT legislator working on CT bill is appalled by Dr. Jones situation- wants to "dismantle" the medical board and will do all he can to help Dr. Jones.
10. Rudy Marconi- did a bang up job supporting Lyme patients and docs. His town/he was responsible for initiating a town sponsored task force which is going full force, providing office space and phones to prevention volunteers, implementing a deer reduction strategy and seeking state grant monies to develop educational materials for our schools, civic groups and senior centers.
Everyone in his town of Ridgefield who owned a car received their Lyme prevention information along with their tax bill.
He said he feels those were good efforts but "these are band aids on a gaping wound." Wants to do more!
He is running for Governor and it looks like he might be "the man".
10. Lots of support all around for Dr. Jones.
11. Eva Sapi's work invaluable and doing more for showing progress than anyone.
Thank you both very much for your reports. Any other information from this conference would be extremely useful. I was not able to attend, so I really appreciate the fact that you were there and are willing to share this valuable information.
And to Tracy9, I am so sorry that the conference was actually depressing. I always find the information that you have provided in various posts to be extremely useful. You have obviously learned a great deal in the course of your journey with lyme. I truly hope that your current treatment will help you a great deal.
Posts: 40 | From New York | Registered: Mar 2010
| IP: Logged |
posted
Magnesium oil? I never heard of this and don't take many baths. Showers easier with a PICC line. Where could you get this? And can I get enough of it this way. Have to take Mg several times a day or I get horrible cramps.
This thing about feeding the keets (vitamins, etc), and feeding the biofilm is hard to fathom. If we don't do these things, we suffer more than the keets.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Thank you Mariski for your supportive words.
Thanks Tincup for posting so much! I have so much to post but gosh, I'm still recovering and tomorrow I have full day trip to LLD appt, which is going to knock me down further. I'll try to post some more in a little bit, I have to pop in this CD.
Again, you can buy the CD for ten bucks, anyone can buy it and see all the doctor's full names and protocols they presented, so I don't think it is protected information. But, will abide by board rules as much as I can.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
To make this a lot easier, we have posted the entire CD from the 2008 conference on www.lymefriends.org There is a lot of invaluable information there. You can go there and read all the powerpoint presentations.
You do need to be a member though. This protects the information from being available to anyone browsing the web. It is only visible to members. We are going to see if it is okay to post up the 2010 CD as well. Obviously at ten dollars per CD, UNH is not trying to make any money off of it.
This will save me the tedious task of copying and posting bits and pieces from the conference as there are so many things I'd like to post. I will however still post things from my notes that are not on the CD...and certainly it is still best for you to buy the CD and have your own copy!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
OK, done.
There are more powerpoint presentations posted now. I am going to share info here but don't feel it's right to share it without crediting the presenter. If the mods feel they should edit out his name, I'll leave it up to them.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Therapeutics: most-
*Selected high dose nutrients- -Omega-3 fats-Fish Oil (whole unrefined salmon oil, www.vitalchoice.com) and/or Krill oil (?synergy) -Anti-biofilm enzymes: Lumbrokinase (adults and kids/ASD-Buluokefrom Researched Nutritionals), for blood-based biofilm/coagulation)and Interfase Plus (in kids/ASD,for intestinal biofilm, Klaire labs) -Methylcobalamin (``methyl B-12'') -Alpha lipoic acid, Acetyl-L-carnitine, Co-Q10 -Toxin removal-of some kind (chlorella, HMD, NDF, EDTA suppos., etc...)
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
The "Lyme Tea" would not post in the chart form. You can see the actual chart in Dr. W's slides on www.lymefriends.org or buy the CD from UNH.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
``Lyme Tea''-instructions *Based off the research of Stephen Buhner (book: Healing Lyme) *Inexpensive, multi-level effects, addresses multiple pathogens-antimicrobial, enhanced immunity,detoxifying, etc...; limited experience with use in children *Combine herbs and 1 gal. water in a large stockpot. Stir, cover and bring to a boil, then lower heat and simmer for 2 hours. Strain (use a mesh strainer covered with cheese cloth ) and pour into a clean canning jar, glass bottle or use an iced tea jug w/spigot. Store in the fridge. Compost herb General dosage guideline: about 3-4 ounces 3 times a day, adjust dose base on tolerance-if severe flares-reduce dose, increase as tol. Dosing is for ADULTS (~160+lb.), reduce dose in children (~70lb child= 1/2 dose and only go to level 2)(**use only under supervision of physician/herbalist,etc) Source for herbs: have herbalist order or-www.mountainroseherbs.com www.1stchineseherbs.com
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
This is one of the many slides that I found depressing, since I have small fiber neuropathy, an autoimmune disease:
``The influence of systemic inflammation on inflammation in the brain: implications for chronic neurodegenerative disease''
Perry H;Brain,Behavior, and Immunity 18(2004) 407-413
*``...systemic inflammation may impact on local inflammation in the diseased brain leading to exaggerated synthesis of inflammatory cytokines and other mediators in the brain, which in turn influence behavior.
These interactions suggest that systemic infections, or indeed any systemic challenge that promotes a systemic inflammatory response, may contribute to the outcome or progression of chronic neurodegenerative disease.''
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Principles: BOTH AND
*Effects are usually BI-DIRECTIONAL
*The more chronic parasitic infections...the more likely to be weak/toxic/depleted *The more weak/toxic/depleted... the more likely to acquire chronic parasitic infections
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Chronic Infections as Symbioses: *``The likelihood that these two spirochete infections, syphilis and Lyme disease, correlate with the establishment of permanent human-spirochete symbiosessoon after entry of the bacteria into tissue has been insufficiently investigated.'' *``... later immunoregulation problems, seems to facilitate acquisition of opportunistic bacteria, viruses, fungi and the (possible) progression to full-blown collapse of the immune system''
*``...cover themselves with human proteins to which people make antibodies causing ``autoimmune diseases'' *Spirochete round bodies Syphilis, Lyme disease & AIDS: Resurgence of the great imitator? SYMBIOSIS (2009) 47, 51-58 2009. Lynn Margulis, et al, ISSN 0334-5114
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Ten principles of the relationship between infection and autoimmunity. *``Infections can cause autoimmune disease. *Different infectious agents (viruses, bacteria, fungus and parasites) can trigger autoimmunity. *An infection can trigger an individual with an underlying immune dysregulation to express an overt autoimmune disease. *Infectious agents can determine the presence of disease-specific auto-antibodies and clinical manifestations. *In many cases, it is not a single infection, but rather the ``burden of infections'' during life that is responsible for induction of autoimmunity. *Infections during childhood can be implicated in the development of autoimmune diseases in adulthood. *Infections can protect some individuals from some autoimmune diseases. *The same infectious agent can induce one specific autoimmune disease and protect from another autoimmune disease. *Molecular mimicry, epitope spreading, bystander activation and polyclonal activation can induce autoimmunity after infections via innate and adaptive immune responses. *Genetic susceptibility might explain why only a subgroup of individuals will develop autoimmunity after infections.'' ``
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Infection and Autoimmunity- *``...not always a hit and run event, but rather a cumulative process. The immune system is affected by repeated infections from childhood, and in immune sensitive individuals, a breakthrough point might occur when the infection burden crosses a crucial level. This breakthrough point might be reached when a specific pathogen load, immune loador a unique combinationof pathogens is established.'' ``
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
CDC: Emerging Infectious Determinants of Chronic Diseases *``In contrast, the inability to detect an agent in the setting of chronic disease does not rule out infectious etiology. Existing tools and methods may not be sensitive enough to link known agents with chronic disease, or they may be unable to detect as yet uncharacterized novel or emerging microbes. Diagnostic assays might not access intracellular, sequestered, or nonreplicating agents. Testing may occur too long after the exposure, particularly when years of pathology precede diagnosis of the chronic condition, or persistent immune response to an already cleared infectious agent accounts for chronic disease. Studies that focus on the wrong group of people or the wrong tissue cannot support or refute causality. In all these circumstances, a true infectious determinant might remain unidentified.'' O'Connor SM, Taylor CE, Hughes JM. Emerging infectious determinants of chronic diseases.Emerg Infect Dis 2006 Jul. www.cdc.gov/ncidod/EID/vol12no07/06-0037.htm
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Most of the ``infections'' in the chronically ill...are ``Parasites'' *Borrelia spirochetes (the agent causing ``lyme disease'') are obligate parasites-they cannot survive outside a host organism. *Same with most of the other vector-borne infections-their survival depends on parasitic persistence within another organism, and the ability to transmit to other hosts via vectors and non-vector means. *Affects unique in each host: self-eradication...silent carrier severe illness. Fluctuating spectrum.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
``Parasites'': survival specialists *A dominant force in evolution of life *Requires *alteration of immune system*to ensure it's survival-suppression, evasion and subversion *Complex effects-interactions, variable -Genetic manipulation-new genes, differential expression of existing genes -Affect the other organismsalready there, and vice-versa Quorum-sensing, species interaction, gene exchange -Defensive strategies: Biofilm formation, intracellular, cloaking, mimicry, Polymorphism-multiple forms (cyst, cell-wall deficient, granules, etc...) -Puppet-masters-behavioral alteration
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Thanks for posting.
I wouldn't give up hope based on this. People do get better. There are ways we can help ourselves or each other...
Nothing is written in stone.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
There was also a lot of information presented on XMRV by Dr. Burrascano. I agree, no one was presenting a hopeless scenario! The message was, we are working hard and researching diligently to figure this out!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Tracy - Thanks for your hard work! I will check out the PowerPoints at LymeFriends.
Do not despair! There is innovative research taking place all over the world. If I had a fully intact brain, I would share what I learned at my recent LLND visit. (It was very cool, whatever it was...)
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
UP.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
Please remove the doctor's name. If you feel you can't post this without crediting him, maybe you could ask his permission about posting it and/or crediting him.
He is my child's doctor and I feel about him the way a lot of people feel about Dr. J. I don't want to see the same thing happen to him.
Posts: 984 | From US | Registered: Dec 2007
| IP: Logged |
posted
Tracy, I know what you mean about being depressed at the fact that the treatment might make us worse. This is my situation too. Lyme has been causing muscle wasting for the last three years, many other lyme symptoms in the years before that. So when full doses of meds are used now, the herx causes more damage. It is a catch 22 situation, for some of us. Damned if you do, damned if you don't.
This seems like an almost unsolvable problem to me. Hope I am wrong.
But from your notes, it is also clear that the reason we are still sick is that it is a very complicated situation. Makes those who say we can be cured with one doxy pill look like total fools. Or complicit in a criminal conspiracy.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Doctor's names have been removed by moderator's; I checked back. Sorry, just saw this, spent day in ER. I will not mention full names in future posts now that this has been clarified by moderators. (However if you click on the conference agenda they are all right there.)
I will try to post what I can from my written notes as soon as I'm feeling a little better! Missed my LLD appt today unfortunately.
I wrote down the exact quotes from the politicians which were VERY COOL, and I look forward to sharing those when I pull out my notes. There are also some random tidbits I noted from the question and answer period, etc.
All the info on XMRV is now posted on Lymefriends. It is very cutting edge, fascinating research just released in the last 4-6 weeks by Dr. B, and includes a lot of slides and diagrams, very cool. I am going to have my LLD test me for it.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Tracy, you rock!!! thank you.
Posts: 2675 | From ct, usa | Registered: Jan 2004
| IP: Logged |
posted
I have more notes, but here's one set below.
Dr J's presentation:
- Fifty-four years of pediatric experience, started with cancer & leukemia - Recalled Polly Murray's observations of JRA in the 1970s, which demonstrated Lyme disease and its invasion of multiple joints & brain - Patients also tested positive for mycoplasma fermentans, Ehrlichia, Babesia - These pathogens are transmitted sexually, through breast milking, birthing - Explained a wonderful, personal story about a little boy, ``thank you for giving me the key to unlock my brain'' - 40% of children in his practice have co-infections (qualified as a ``low estimate'') - 50% had no history of tick agents; all had joint sensitivity, irritability, etc. - Western blot is fatally flawed (lots of specifics provided) - Lyme is a clinical diagnosis, supported by lab tests - Test results have verified the presence of spirochetes & Bartonella in umbilical cord, penile foreskins from circumcisions, placenta - Most of his patients are treated for 1 - 3 years on average, but the extreme range is 3 months to 10 years - Different people have different pheromones, some are attractants for ticks - Infectious microbes can exist in the salivary glands of ticks, so ticks do NOT need to be attached to their hosts for 24+ hours to transmit disease - Different strains of Bb may explain different symptoms, but all strains show that bugs have a proclivity for the CNS and peripheral nervous system - Lyme disease has been implicated in a wide range of disorders effecting children; some examples include: ODD, OCD, PDD, spectrum disorder, anxiety, depression, etc.
Upon conclusion, Dr. J received a long standing ovation.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Cold Feet, AWESOME. Sadly I was late and missed Dr J's presentation, thank you SOOO much! He didn't have any powerpoints either....so this was wonderful! I pulled out my notes, have Dr. W's ready to post, just so fatigued today.
I have LLD tomorrow, probably can post up Dr. W's notes on Friday if nothing else. They are short but have key critical points.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
I'd like to add that our genetic ability to detox or not is also a key factor in how we handle treatments -
as tested for in the detoxigenomic liver test (Genova Diagnostics lab in N Carolina) and Yasko test -
Tracy - never say never -
Here's my current example - I've had high prolactin, a pituitary hormone - it's been at 220, supposed to be 20.
It's been dropping - from 220 to 150 to 100, will see what it will be in the next blood draw.
That's a brain change -
I'm on an antibiotic (clindamycin) plus a couple anti-inflammatory anti-oxidants (mangosteen juice, noni juice, grapeseed extract).
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
Question: The doses of Buhner herbs in the "Lyme Tea", posted above, are very high.
What is the dosing of the TEA itself? How often, how much?
At first when i read it i thought i'm supposed to take that much, so i doubled my dose of Polygonum,--- and felt much better!
I'm a person who probably should take higher doses, since i never got a reaction from the normal doses.
------Polly Polygonum ----or Nilufar Knotweed
Posts: 1226 | From USA | Registered: May 2007
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
The directions for the tea are two posts down from the tea recipe.
I take Noni juice capsules, plus so many other supplements....who knows what helps what....well, I'm off to LLD appt and hopefully getting an order for the XMRV test.
Highly recommend you read the Burrascano powerpoints on the XMRV and Lyme connection; they are really mind blowing!!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I read the XMRV stuff. It is mind blowing and makes me question the lyme diagnosis. Just what I needed. I am going to mention it to my LLMD Monday.
I guess I can't say the doctors name, but a famous doctor that treats CFS and FM, believes that chronic lyme is actually chronic XMRV virus. This was presented by the famous lyme dr, Dr. B. And that makes it even more mind blowing.
So what are we suppose to believe??? What is really wrong with us?
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Oh yea and the FM/CFS dr, Dr C, says that 10% of his patients were previously diagnosed with LD. (I guess they questioned their diagnosis). Anyway, he says 80% of them test positive for XMRV.
Wow, pretty good percentage!
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
quote:Originally posted by sutherngrl: I guess I can't say the doctors name, but a famous doctor that treats CFS and FM, believes that chronic lyme is actually chronic XMRV virus. This was presented by the famous lyme dr, Dr. B. And that makes it even more mind blowing.
I think we have to be careful how we perceive this message. I listened carefully to Dr. B's presentation. At no point did he say XMRV is chronic lyme; he was just making a point about the very positive correlation between the two. It's also the basis for his research focusing on XMRV, which will include 100 XMRV patients, 200 controls, etc.
Just my 2 cents. But this new retrovirus is concerning.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
In case I was misunderstood.......
I am going by what I read in the "slides" that were presented, from Dr C's research. I did not hear the presentation by Dr B; but Dr C is the one that says chronic lyme is actually really chronic XMRV. Dr B must have just quoted Dr C OR just put up the slide that stated this from Dr C's research.
Either way, it has to make you think.
To me it doesn't matter if its chronic lyme, chronic XMRV or both. You can't treat a virus with an antibiotic. So I don't care if its a separate illness or a co-infection or lyme, the XMRV has me concerned, now more than ever.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Very interesting! I had CFS over 20 years ago, got well for a bit & then got Fibro which is now Lyme (by clinical diagnosis)... Don't remember any tick bites but I did get some nasty virus type flus prior on both occasions of becoming ill.
I didn't have Epstein Barr Virus & none of my tests were very conclusive for much of anything. The thing I really find interesting is that I just came across some info that the CFS doctor (Dr. C) has been recommending artemesia!
None of the abx I've ever done have helped me much but I am herxing since I started artemesia. Just some interesting links for me.
The latest thoughts from my doctor are that I have babesia & some people don't have typical babs symptoms... Go figure? I mentioned XMRV & he didn't know anything about that.
I really need a new doctor but there aren't many LLMDs or smart doctors around here. I'd like to see Dr. C (CFS guy) but he's really expensive!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
posted
With lyme and coinfections when a person develops autoimmune disease can the autoimmune disease ever be reversed to normal?
Posts: 140 | From Illinois | Registered: Jul 2009
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My particular autoimmune disease is uncurable, but I don't know about them all. I have small fiber neuropathy, it is degenerative and there is no cure. Sucks for me. But IVIG, if I can tolerate when I start it again, should keep me stable and even help.
I saw my LLD today. We brought in (I think we CAN say his name because he is not a treating doctor) Dr. Burrascano's powerpoint presentation on XMRV as well as a test requisition for XMRV. My LLD was unable to make the UNH conference but had already procured the CD, and was extremely excited about the XMRV stuff (interested, intrigued.)
He anxiously took the printouts, rapidly signed my XMRV test requisition, and copied it to order test kits for his patients. He thinks it's really something.
I can't comment, it's over my head. My husband was very intrigued by it. I guess the important thing is, we need to find out if we need to be on antiretrovirals. It could be a missing piece.
Also, I feel like a real dodo head. I already knew my Lyme load was way down and my primary issues were Bart and small fiber neuropathy, yet for some reason I became depressed and hopeless over that damned slide where the bleach didn't kill the spirochetes. Furthermore I left feeling hopeless at the lack of answers to cure Lyme.
Am I braindead? Or maybe I was feeling collective depression for everyone? Lyme isn't even my main issue. I have BEATEN Lyme to a large extent, this I know, but can't seem to retain that fact. My CD 57 has gone from 32 to 120 in a little over a year. My Western Blot (IGENEX) has steadily improved also. Less and less bands every time!
Today, I got my first ever NEGATIVE IGENEX Western Blot. I know that is the opposite of what most people are looking for, but after several positives, it was a beautiful sight. My awesome Lyme doc who rocks my world was SO excited.
He thinks I have really beaten Lyme down a LOT! This is amazing; I've had it for over 30 years, and we all know it is so much harder to beat with co infections. Even though I feel progressively worse each year, it is NOT because of Lyme. So that is very good news. I think I have a hole in my brain that I can't retain this fact. Oh yeah, the ketes must have drilled a few there.
So the bad news is my Bart titer is off the charts!!! It keeps going up, up, up over the past two years. And this is on Quest!!! My Lyme doc was amazed at how high it is (on Quest, no less. He had to keep double checking that.) But that was before I started Rifampin (AKA back alley beating in a capsule.)
The good news is, as he said, we definitely know what we are dealing with. Not Lyme so much anymore, but I still have a couple bands, and we are going to keep treating it. I killed those suckers with all that aggressive treatment just like Six Goofy Kids did (sans 880.)
But I have a nasty case of serious Bartonella that is going to take a LONG time to treat. In six weeks, I've seen about a 25% improvement in my fatigue after being "comatose" for 3 years. I'm having lots of NEW symptoms I'm not real fond of, that are rendering me still bedbound, but it's the Bart coming out and I'm confident they will resolve at some point. This Bart is some seriously nasty crap.
He wants to keep me on just Rifampin; he said it is not necesary to add another med...I hope that's correct. I've read here that another med should be added, but he said not necessarily. Frankly the Rifampin is doing such a number on me I can't really conceive of adding any more torture.
I am going to restart the IVIG for the small fiber neuropathy....SOON!!! I meet with the head of the Cancer Center where I was getting it FINALLY on Monday and there is no reason to think he will deny me. Dr. W has my new orders all set and ready to go. I need to make peace with the nurses there who are less than fond of me to say the least, since I could be there two days every other week for the next couple years.
Now my son needs IVIG too but he won't be getting it there; his pediatrician will have to set it up where she is on staff, and with any luck then he can get it at home. That will never be an option for me due to my past reactions.
My thyroid is a mess, starting me on Cytomel in addition to Levothyroxine....a new sleep med to try, Rozerem...Fiorocet for pain (killer Bart headaches)....I have extremely high inflammation (I am not well versed in what that means). My sed rate is very high and Cardio CRP is very high. He put me on some Nutramedix supplement OspC or something like that for inflammation.
Going for SPECT, MRI with contrast, sleep study, tilt table test, going to someone who does bioidentical hormones, echocardiogram on Monday, Pulmonary Function Test on Monday, more bloodwork....low Vitamin D....oh and so much more joy to behold.
Missed meeting my new Lymenet friend by ten minutes. This all probably belongs in a different thread... sorry for my ramblings. I'll make it up to you all with some real good UNH conference postings, promise!!!
So now I am happy and hopeful, and no longer feeling despair, but most of all I am hopeful for everyone because if I can beat Lyme, with all the crap I have going on, by God anyone can!!!
So now I have to register my one complaint....a five hour ride in a Honda CRV with 170,00 miles, with totally trashed shocks, struts, bushings, worn out flattened seats, and the heater stuck on in 70 degree weather makes for an extremely painful ride for two Lymies. By the time I got home I couldnt' hit the pain meds fast enough. Oh, the agony.....bouncing, muscles tensed, tossed about for five hours....pure torture.
Meds and sleep tomorrow. Night all. I'll try to post you up some stuff from the conference tomorrow instead of just rambling on....promise!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
posted
Tracy, you are a trooper - and thx for all the reports -
Helenah - I think we have to treat to feel better. The best we can get, I think, is symptoms in remission.
You could read through some of the success stories listed at the top of General Support to get a sense of the variety of treatments people try. We're all different when it comes to what works.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
![[Big Grin]](biggrin.gif)
![[woohoo]](graemlins/woohoo.gif)
Printer-friendly view of this topic