1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Who Is Dr. Burrascano & How Big Is the Lyme Group?

Discussion in 'Lyme Disease and Co-Infections' started by CFS-FIBRO-LYME, Aug 20, 2010.

  1. CFS-FIBRO-LYME

    CFS-FIBRO-LYME

    Messages:
    49
    Likes:
    16
    Houston, Texas U.S.A
    In the News about XMRV changing to HGRV- Human Gamma Retro Virus, a poster asked the two questions in this thread's title: Who Is Dr. Burrascano & How Big Is the Lyme Group?

    Dr. Burrascano has written the International Lyme And Associated Disease Society (www.ilads.org) treatment guidelines for treating physicians for around a decade or more.

    He worked and lived on Long Island, right across from Plum Island, The US Bioweapons facility that most likely spread West Nile, Lyme, Babesia, Bartonella, Erlichia and probably many other deadly pathogens across the Eastern seaboard, but especially Long Island.

    He was run out of practice by the Infectious Disease Society of America (IDSA) working with state medical licensing boards, as have many, many ILADS member physicians who treat seriously ill Lyme patients with long term antibiotics, and many times long term IV antibiotics.

    Dr. Burrascano personally confronted Senator Edward Kennedy about the Lyme cover-up and told him it was "Another Tuskegee Experiment".

    The ONLY reason Lyme is getting more press than CFS is better representation by lawyers, doctors and other professionals that are like the Whitmires' - people who are sick with the disease they are desperately trying to cure and get help with. They have skin in the game. Dr. Burrascano himself had Lyme and treated himself 3 times with IV antibiotics for it. Every bit of positive press came from tv reporters, media reps, etc. afflicted with the disease. WAY more than a pound of flesh for what has reached the masses.

    It is worth noting in the other thread others said they knew nothing about Lyme, so you can draw your own conclusions about how actively this rampant disease bundle (tick borne diseases) have been quashed by the evil powers that be as far as "Way More Reporting" goes.

    You can see Dr. Burrascano's latest Lyme Guidelines and download them for free on the main page of www.publichealthalert.org

    The Lyme group is just like the CFS group - many, many doctors seen until diagnosed, way under-diagnosed and undertreated and many, many physicians sued by big insurance (Blue Cross) into bankruptcy, chased out of their home state by Medical Licensing boards, you guys know the drill.

    The difference is this: This is an already identified spirochetal disease (Like Syphilis) that the discoverer Willy Burgdorfer says "Is more virulent than Syphilis". See his comments here:
    http://underourskin.com/blog/?p=191

    Like CFS, we have a great movie that has been shown in theaters nationally in the U.S. and I think a little internationally and free youtube clips almost no one in the world has seen, despite persistent efforts to get it shown internationally - see here: http://underourskin.com/

    The Lyme group is like the CFS group - very large, most people unawares that they are spreading a spirochetal disease worse than Syphilis and actively persecuted and slandered by medical, legal, governmental agencies.

    We have a book Like Osler's Web with a forward written by Hillary Johnson called "Cure Unknown: Inside the Lyme Epidemic" by Pamela Wientraub.

    Like CFS, most doctors refuse to "believe in" or offer diagnosis or treatment of Lyme.

    Like CFS, Lyme tests have been purposely and intentionally corrupted to the point of always producing false results saying you're not sick.

    I could go on and on, but hopefully you'll read up on your own.

    In Summary, this is as reliable a source as it gets in the Lyme world. I personally asked the director of the movie "Under Our Skin" why the CFS and Lyme communities hadn't joined forces as the symptoms are basically identical with some variation and he said there were other larger communities that were being targeted first like M.S.
     
  2. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    758
    Hi, CFS-FIBRO-LYME.

    Good information!

    For what it's worth, I presented a poster paper linking Lyme with CFS at the 2009 IACFS/ME conference in Reno. It can be found at www.cfsresearch.org. The connection in my paper is glutathione depletion, which Borrelia have been found to do, and which I've suggested can lead into CFS in people who are genomically predisposed to developing a partial methylation cycle block.

    It remains to be seen if and how HGRV meshes with this hypothesis. I'll be interested to find out if it depletes glutathione.

    Best regards,

    Rich
     
  3. Greggory Blundell

    Greggory Blundell *****

    Messages:
    109
    Likes:
    0
    New Jersey, USA
    Well, yes, easy to get pissed about Lyme. But there is a test for basic Lyme, and treatment.A one shot deal for most PM's. But when that treatment comes up short, the treatment metric for Lyme is to be metaphorically left to swim in the deep Atlantic till no one hears your plees, and you politely sink.
    i still maintain Chronic Lyme is Lyme with xmrv. Nothing to base that on. Just a visceral thing. I am hurt by it, so I've a bias...
     
  4. CFS-FIBRO-LYME

    CFS-FIBRO-LYME

    Messages:
    49
    Likes:
    16
    Houston, Texas U.S.A
    richvank, thanks for the info on the glutathione depletion link, the original update from Dr. Burrascano and knowing there are researchers like you who also see the CFS-LYME connections. It sure looks like I wasn't the only one who thought there is significant reason to connect these two communitites.

    I would also add that in "Cure Unknown: Inside the Lyme Epidemic" by Pamela Weintraub, she notes an exchange between two detestable figures the political - not medical - creation of Fibromyalgia as a subset of Lyme symptoms. Obviously, if your cells don't have the energy to perform their duties properly it should follow that your muscles would ache similar to a post-workout lactic acid buildup. That's basically my non-medical background take on what Fibromyalgia is. So actually, your link is very likely present in all three, so you might have another group to add to your research list with additional research documentation. If you haven't already read Pamela's book, do. Very helpful on history, politics and even how these "Syndromes" were created to cover up and misdirect the truth about medical causation. I would add "Lab 257: Plum Island" to the list to know who/what/where is behind all of this.

    Thank you for your efforts working on two diseases that are potentially dangerous to your own career, which is perverse beyond words. May the Lord protect you and those like you.

    Greggory Blundell, I also strongly suspect that Chronic Lyme with XMRV/HGRV is certainly a very valid path to follow for why those with Lyme who didn't receive antibiotics right away don't ever really recover much if at all and it sure looks like there are Medical Researchers on the case like richvank. Many in our local group including those with medical backgrounds immediately saw that link as obvious as well.
     
  5. Rrrr

    Rrrr Senior Member

    Messages:
    1,402
    Likes:
    271
    CFS-Fibro-Lyme,

    a really great summary and post! thank you!

    rrrr
     
  6. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    I think it's great thing that Joe Burrascano is involved. Coming from the Lyme world I believe he has a lot of credibility and knowledge. And he doesn't seem to stray from controversy - he sticks his neck out.

    I agree that chronic lyme is probably not really "traditional" lyme. That's why I stopped taking anti-biotics.
     
  7. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    This might get some people angry and that's not my intention, but personally, i'd be relieved to see more mainstream doctors in this and not only people who are so controversial.
    Maybe Dr. Burrascano is right about the way he treats Lyme patients (i don't know anything about Lyme), i can't judge this, but some of the things i read above make me feel slightly unwell and suspicious.
    That's why i can't wait to hear about the Dr. Lo presentation (or the Alter or Lo paper, whatever is first).
     
  8. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    154
    Essex, UK
    Well - you might be waiting a very long time. ANY researcher or doctor dipping their toe in this fast become 'controversial' (if 'controversial' means 'subject to massive ad hominem attack from their opponents).
     
  9. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    Yes, I agree. Almost by definition nobody involved at this point will be "mainstream". It may not be ideal but we need people who stand up for what they believe to push things forward. Mainstream people - again by definition - do not do that. They wait until it's been published in the New England Journal of Medicine and then declare it "self-evident".
     
  10. Wayne

    Wayne Senior Member

    Messages:
    2,221
    Likes:
    1,373
    Ashland, Oregon
    Thanks much for posting this information. I have tested positive for Lyme, and have felt a bit overwhelmed by the different treatment options. Some who take antibiotics get better, others get worse.

    After the XMRV info came out, I decided it would be best for me to get clarification on my own status before starting any kind of treatment. I suspect those who get well with antibiotics may have "traditional" Lyme, while those who don't may have "chronic" (XMRV related?) Lyme.

    I've never thought of Lyme Disease before in this way, but doing so reinforces my belief that waiting to get tested for XMRV and closely watching how the XMRV/Lyme connection plays out is the best choice for me at this time.

    Thanks again, Wayne
     
  11. SunnyGal

    SunnyGal Senior Member

    Messages:
    147
    Likes:
    0
    Regardless of whether or not Dr. Burrascano is controversial we need him deeply involved in this to help sort out how XMRV is involved in chronic Lyme disease. As others have pointed out in other ways, there really are no mainstream doctors who know anything about Lyme disease (especially chronic Lyme) because as soon as any doctor starts to learn anything beyond what they are taught in medical school (which is extremely limited) they are now considered outside of mainstream and are labeled controversial. You can say the same about any doctor who researches CFS or treats for it.

    I agree that having mainstream researchers involved brings credibility to the work being done. I think we have excellent mainstream researchers on it already. These are researchers who know nothing really about CFS or Lyme. And that's what we want. Once you bring in any mainstream people who claim to know anything about CFS or Lyme, you automatically have people who have biases against it.

    Let's throw the labels away and have the best, brightest, most knowledgeable minds involved in sorting all this out for us. Our lives depend on it.

     
  12. Snickers

    Snickers

    Messages:
    13
    Likes:
    0
    Virginia, USA
    Wayne...I would definitely start Lyme treatment. You never know how you will respond to treatment unless you try. You may end up being one of the people who responds really well to treatment. If you have any chance of getting well you should take it.

    I think we still might have a ways to go before we get to the end of all of this XMRV research. If you wait to find out how all of that pans out you could be waiting a while. We don't know what their research will turn up and we don't know how long it would be before there is a treatment for it.

    So IMHO I say defintiely start the lyme treatment. You can still keep a close eye on how things go with XMRV but at least you will be getting some sort of treatment in the mean time. And who knows...maybe lyme treatment will be successful for you or at the very least you will probably see at least some improvements.

    Good Luck!

    OH and for everyone else...the Lyme community is definitely a very large community. You can go over to Lymenet (http://flash.lymenet.org/scripts/ultimatebb.cgi) if you want to see for yourself and learn more. Just on that site alone there are 20,077 registered members. There a lots more that are unregistered and lots more at other lyme groups. Just for reference...this Phoenix Rising Group has 2,746 members. So I think it would be great if we could all combine forces. There are definitely many of us who have been diagnosed with both CFS and Lyme.
     
  13. SunnyGal

    SunnyGal Senior Member

    Messages:
    147
    Likes:
    0
    I'm diagnosed with CFS, Lyme and tested positive for XMRV (my Lyme doctor is the one who wanted me to get tested). Treating chronic Lyme disease involves a LOT more than just being on antibiotics for years (oral, IM shots, and/or IV). A good Lyme literate MD will treat for bacteria (besides Lyme and tick borne bacterial co-infections, there are mycoplasmas, Cpn, Mpn, etc.), viruses, parasites, biotoxins, etc.

    Anyone who has CFS and has been diagnosed with Lyme should consider seeking out a good Lyme literate MD (LLMD) for treatment. Good LLMDs don't just treat for Lyme, they treat the whole patient for all of their issues. I personally wouldn't wait to find out if I have XMRV before seeking out a good LLMD and beginning treatment. I'd been mildly ill with CFS/Lyme for 35 years and very sick for 10 years when I first started seeing my LLMD. Within a year of treatment my cognitive abilities improved enough that I could read again and do complex tasks at work, and I was no longer on the verge of being bedridden.

    Don't delay! Find a good LLMD today! :D
     
  14. aiden424

    aiden424

    Messages:
    68
    Likes:
    3
    I got sick in april of 86. Was diagnosed with CFS in 1988. Have been on SS Disability for CFS since 1988. Didn't go for it sooner because I kept thinking I would get better. I figured nobody wakes up one day really sick and never recovers. About 5 years ago I tested positive for Lyme. Have been doing antibiotics since. I think antibiotics saved my life, but they did not cure me. I'm still really sick but don't feel like I'm dying on a daily basis anymore. I may have Lyme , but there is still something else too. If not HGRV then something else.

    Kathy
     
  15. rescindinc

    rescindinc

    Messages:
    15
    Likes:
    0
    boca raton, FL
    Hi Rich,
    your old pal and fellow fighter, Tom Hennessy, jr. long term Lyme/CFS/ME/FMS and even GULF WAR ILLNESS patient. Somewhere along the line you sent me two variations of your methylation cycle theories.

    i tried to follow them as best i could but didn't get any better. i am willing to try them again. but, i wanted to know if you had seen anyone take hyperbaric treatment for chronic lyme? i am down in florida now in a nursing home and it might be near the end for me, and two separate hyperbaric facilities have told me that they can HELP long term lyme patients with hyperbaric, usually at 2.4 ATM's for 40 to 50 sessions, sometimes more..
    and that they are getting good results. better results if they get you early. and i think it has been 35 years since i was bitten badly with what i thought were tiny fleas at my beach house in CT, just 10 nautical miles
    from the infamous PLUM island. any advice would be greatly appreciated. rescindinc@gmail.com . All the best to YOU and thanks for trying to hellp so many of us over the years! TMH
     
  16. CFS-FIBRO-LYME

    CFS-FIBRO-LYME

    Messages:
    49
    Likes:
    16
    Houston, Texas U.S.A
    rescindinc, Hyper-Baric Oxygen Therapy (HBOT) WITH Antibiotics will make you herx the worst in your life you ever have, but when you're done, it can make a big difference. Monochambers are best if you have access to them.

    DEFINITELY worth trying if you have the funds for it. Chico Hyperbaric in CA was created by a father to save his son who he performed CPR on a couple times before treating with HBOT, which extended his son's life to the point of him going from bed-bound in a blacked out room to returning to school. Sadly, his son did eventually die - but it sure gave him back a few years with much better quality of life in the meantime. Google them and read articles - they're out there.

    There are contra-indications for HBOT, the biggest being infection with Babesia which is rampant around Plum Island. Contact Fry Labs out of Pheonix area and do their Bartonella, Babesia, Erlichia blood smear to make sure you don't have these prior to starting HBOT. Oxygen feeds these parasites and this could kill you especially since it sounds like you're pretty close already.

    In fact, if you have Babesia, that alone can kill you when your immune system is already shot. With treatment - typically Mepron + Zithromax for a few months, you'll be back thinking about sticking around for a while longer perhaps.
     
  17. Joanne60

    Joanne60

    Messages:
    21
    Likes:
    0
    Thank you for clarifying about Dr Burrascano.

    It concerned me to see the number of patients posting on the thread about XMRV and HGRV that didn't know Dr Joe Burrascano or the controversy over Lyme Disease particularly when so many of the experts with ME/CFS ie Nancy Klimas, Judith Mikovits, Kenny de Merlier etc acknowledge Lyme. Not the Reeves/Wessley psychobabble group.

    So I wrote a post on my blog should anyone wish to read about it and clearly those who don't know about Lyme would do well to find out more especially as research shows 30% of ME/CFS cases are actually Lyme Disease.
    http://lookingatlyme.blogspot.com/2010/08/xmrv-hgrv-mecfs-patient-awareness.html
     
  18. Wayne

    Wayne Senior Member

    Messages:
    2,221
    Likes:
    1,373
    Ashland, Oregon
    Treating Lyme Before Getting XMRV Test Results ?

    Hey Snickers, thanks much for your reply. I'm thinking you made some valid points in your post, and has me rethinking my position. I guess going through the laborious process of trying to find an LLMD feels quite daunting, and so I've been content to let it go for now. I think I'll reconsider.

    In general, I feel I'm pretty attuned to what's going on in my body, and if I were to find any type of anti-biotic therapy being more harmful than helpful, I could back off at that time. Thanks for your encouragement.

    Best, Wayne
     
  19. Wayne

    Wayne Senior Member

    Messages:
    2,221
    Likes:
    1,373
    Ashland, Oregon
    Hey Sunnygal,

    Thanks much for posting your thoughts and experiences on treating Lyme Disease. I've long suspected the majority of my cognitive issues are more from Lyme than CFS (I believe I have both CFS and LD).

    It's encouraging to hear how your cognitive abilities improved to the point where you could do complex tasks again, almost an impossibility for me these days. Yours and Snickers' posts have really got me rethinking how I should proceed. I very much appreciate your replies.

    Best Regards, Wayne
     
  20. SunnyGal

    SunnyGal Senior Member

    Messages:
    147
    Likes:
    0
    Very welcome, Wayne. Lyme treatment is not an easy road, but most CFS isn't either. Hope you find a good LLMD and make progress soon in your recovery!

    Sunny

     

See more popular forum discussions.

Share This Page