Home Forums General Discussion Landmark Breakthrough in the Lyme Wars

This topic contains 8 replies, has 3 voices, and was last updated by  Maz 10 years, 5 months ago.

Viewing 9 posts - 1 through 9 (of 9 total)
  • Author
    Posts
  • #300239
    Maz
    Keymaster

    At long last…incredible news for chronic Lyme sufferers!

    This press release from the CT Attorney General's office is a landmark breakthrough that the Lyme community hopes will change the restricting IDSA guidelines that severely restrict the treatment of chronic lyme. This reassessment will take time, but it is fantastic news that things may now be moving in the right direction.

    Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter.”

    “Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.”

    http://www.ct.gov/ag/cwp/view.asp?A=2795&Q=414284

    Blumenthal To Announce Review Of Lyme Disease Treatment Guidelines

    Hartford Courant Article – May 1st, 2008  By HILARY WALDMAN

    “The controversial treatment guidelines for Lyme Disease will be subjected to
    an independent review under an agreement announced today between Connecticut
    Attorney General Richard Blumenthal and the organization the sets the
    guidelines.”

    http://www.courant.com/news/custom/topnews/hcu-lymedisease-0501,0,2205579.story

    Peace, Maz

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #312432
    Maz
    Keymaster

    And the beat of the IDSA's tomtom drum goes on…..here is the response to the agreement met with Ct Atorney General Blumenthal's allegations about the 2006 guildines to treat Lyme Disease.

    http://www.idsociety.org/Content.aspx?id=11182

    Peace, Maz

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #312433
    Tiff
    Participant

    [align=left]

    ?IDSA has agreed to this unique, singular review of our guidelines because the panel will consist solely of physicians and scientists,? said IDSA President Donald Poretz, MD. ?We are confident that our guidelines for the diagnosis and treatment of Lyme disease represent the best advice that medicine currently has to offer, as is the case with all of the medical guidelines issued by the Society, and we look forward to the opportunity to put to rest any questions about them.?

    [/align]

    [align=left]Boy, they are a modest bunch!  The High Priests of the medical world, if they do say so themselves… no room for error or improvement there.[/align]

    [align=left]Maz, does it concern you that if this all goes one way (the IDSA's way), then it might get more difficult to seek alternative treatments?  I worry about this with health care in general.  I really worry about it as we here in the US move toward universal health care.  Sure, it sounds great to have all your bills paid, but since I have military insurance, I already know that that means they will pay your bills if and only if you do it their way.  Right now I can “wiggle” in the system to get prescribed the meds I need to follow MP, but in a more controlled system, this would surely appear as fraud to them and be stopped in its tracks.  Very scary to not be able to have any choices because “they” (the uhumm… scientists and physicians – whoever they deem worthy of such a label, and that might not be Dr. Brown or Dr. Marshall) decided these treatments are “unworthy.” [/align]

    [align=left]The crazy thing is they do this mostly to save money, yet by seeking alternative treatment I have remained unbelievably cheap.  By now I would surely have been on expensive immunosuppressive drugs if they had it their way.  Why do they say long term AP use is so expensive?  Are they assuming that the people they refuse to treat this way will not end up on other, more expensive and also dangerous drugs?  It puzzles me.  What do they think they should do when people with Lyme continue to be sick?  What is their plan?[/align]

    #312434
    Maz
    Keymaster

    Hi Tiff…yea, the arrogance of the IDSA is pretty astounding, isn't it? I wonder if they realize how defensive and pompous their response to these latest developments sounds to the general public? Honestly, I don't think they can see past their inflated egos to actually see what horrible science this makes for.:doh: In spite of their agreement to the guidleine review, they're still claiming vindication, because their “society's”word is golden. It's truly mind-boggling.

    In answer to your question…yes, it does concern me that in the worst case scenario that if the IDSA ultimately regains the upper hand it may mean we'll lose a lot of Lyme docs, limiting treatment options. When one oligarchic “governing body” has the final word in anything, there is very little wiggle room for debate…in effect, it's like any dictatorship. However, we do still live in a democracy…at least the last time I looked….so I don't think that sufferers will sit back and just accept their fate, either, and the 'war cries' will carry on. This very significant win for the Lyme Literate community really could go either way, but managed effectively I think it could well turn out in Lymie favor, especially in exposing the kind of medical dictatorships that actually do exist. Also, I gather that CT Atty Gen Blumental isn't about to give up and, though this may be just heresay on the Lyme boards, he has some chronic Lyme sufferers within his own circle of family and friends and is well aware of its devastating effects.  If true, this is certainly a bonus. 😀

    I understand your concerns about a shift to universal health care. In any paradigm shift there is a period of fear in the reorganisation period, because what is known feels safer than what isn't known, even if what is known is dysfunctional. However, what may be the most powerful thing to come out of the Lyme Wars is exposing these types of medical dictatorships for their conflicts of interest. This is huge stuff in the world of medicine and could wind up being the making of some very fine legal precedents, because it's the first time a medical society of any kind has been challenged. These types of legal precedents would follow into universal health care as part of law, which would go a long way towards helping to protect freedom of choice in medical care. I guess we won't know the answer to any of this, definitively, until it comes to it…but I'm not too concered at this stage. Although universal care has been cast in a “socialist” light and there is a deep fear of anything of this ilk, universal health care works in many other countries….and probably the model for this is Germany, where experiemental and integrative medicine is now the norm. I think in the long run a lot will depend on the voice of the people. We already have socialised education in the US (leave no child behind) and this doesn't seem to worry anybody too much and is seen as a good thing. Of course, don't intend for this to be a subject of debate, as each will have their own views on that…that's democracy in action! 😉  Just pointing out that some changes in health policy, especially if it helps those without means, has got to be a good thing….as in “leave no patient behind.”

    You're right…it is crazy that antibiotic therapy is hyped by the IDSA as being inordinately expensive and dangerous. It may well be that there are unscrupulous doctors out there who don't know what they're doing could harm a patient….but this happens every day in medical accidents where doctors are following standard protocols! Any treatment choice carries an element of risk whether the doctor is unscrupulous or following set standards for treatment…may even be that the unscrupulous ones don't want to get caught so they even play it safer than your average bear. So, I don't really buy that. Most patients who seek alternatives are the types who really do the research and choose AP as in informed option, as we all have here. We're not the types to just open wide and let the doctor pour in the medicine without asking why and how. And your point about the cost of immunosuppressives as opposed to antibiotic therapy is so on target! This argument by the IDSA again makes no sense whatsoever. The people who seek treatment for chronic Lyme are seeking it because they are immune-compromised by the infection. What seems more unscrupulous is the prescribing immunosuppressants and charging an arm and a leg for them.

    Really, none of the IDSA's arguments make any sense to anyone who is experiencing chronic Lyme….they have no plan for teating chronic Lyme in place, because they don't acknowledge that it exists, saying that any symptoms that linger after initial treatment must be some other disease. 😯

    The “Lyme Wars” really are worth watching by all of us…whether one has Lyme or not, because the politics involved mirrors that of AP in very significant ways. If chronic Lyme becomes accepted as being the infectious trigger for many of our types of diseases, then vindication for Dr Brown's infectious theory will follow…all the more believable, simply because mycoplasma is a known co-infection of Lyme.   

    Sorry for the rant…it must have been building up inside and it just erupted! LOL

    Peace, Maz

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #312435
    Tiff
    Participant

    We already have socialised education in the US (leave no child behind) and this doesn't seem to worry anybody too much and is seen as a good thing.

    Now of course, as in medicine, there are many, many fine professionals doing a great job and tons of success stories that must never be forgotten, but…

    Plenty of wise people are very, very worried.  Alas, I don't want to debate either.  Just allow me to introduce you to the Dr. Brown of Public Education, John Taylor Gatto.  He is a 33 year, award winning, veteran teacher of public education in New York City.  He will tell you just exactly what the school system is about and education is the last thing (kind of like health and wellness is slowly becoming the last thing in medicine).  Public education invented the phenomenon.  But… you don't have to take my word for it:

    http://www.johntaylorgatto.com/

    You are exactly right about watching the Lyme wars.  They speak volumes about free expression of ideas and seeking understanding and truth.  That is occurring in many areas of our democracies, and as usual, there is plenty of friction!  That is a good thing!

    Okay, it is very late.  Hope everyone in my time zone is sleeping tight!

     

    #312436
    Maz
    Keymaster

    Hi Tiff,

    Good ol' Einstein probably had it right, “You can't solve problems at the same level at which they were created.” I've always taken that to mean that you had to step out of the box you're in and really look anew at problems from a whole different perspective. Dr Brown said in The Road Back, there's a bit of a maverick in every Aper and seems this is what he meant! 😉 Thankfully, Blumenthal is also a maverick of sorts, helping to look outside the current “medical society” box that dictates all our health concerns (perhaps not unlike John Taylor Gatto is trying to do for education in the link you sent above). 

    Isn't it reassuring to know there are wisdom seekers out there who aim to bring new vision and perspective to us all? In many ways, I think Dr Brown was a master of this in the field of rheumatology. I always think it's a bit ironic that so many new thinkers are considered “on the fringe” and really not taken seriously (a bit like the guy who discovered H Pylori caused stomach ulcers) and a pity that it sometimes takes an old paradigm crashing irrepairably, before we're all forced to look with new eyes.

    Thanks for sharing, Tiff…much appreciated. 😀

    Peace, Maz

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #312437
    froggy
    Participant

    Maz,

     

    So if the Lymmies win do you think this will open the door for monnies and research for RA and other rhumatic diseases?

     

    Froggy:headbang:

    #312438
    Maz
    Keymaster

    Hi Froggy…unfortunately, no….that's what the Lyme Community is fighting to get through Congress, as we speak…a Lyme Bill. A bill like this would ensure that adequate monies are assigned to more extensive Lyme research and education.

    This bill, if it gets tabled by Congress this year, could be affected by the outcome of new treatment guidelines that may be drawn up by the newly selected infectious disease doctor panel…whichever comes first.  

    On speaking with my Lyme doc today, he feels the new panel may be just has hard-nosed as the previous bunch, because they will be selecting their own guys again. The ombudsman is selected by the CT Atty Gen and his purpose is just to ensure there are no conflicts of interest (shares in drug companies that may be developing new Lyme drugs, for instance, as was the case with one or two on the prior panel :X). The one good thing about this guideline review is that it will be televised in its entirety, so hopefully Lyme docs chosen to represent the Lyme community will get a fair shake.

    The IDSA guidelines for the treatment of Lyme are really just that…guidelines that were drawn up by a handful of infectious disease doctors that are members of the society. The fight over these is because the guidelines are so restrictive (limiting treatment to 3 to 4 weeks of orals and several months of IVs for disseminated Lyme and gone into the heart, nervous system, etc.) and don't acknowledge a chronic form of Lyme, at all.

    Peace, Maz

     

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #312439
    Maz
    Keymaster

    PS….and in answer to your question :roll-laugh: which I nearly forgot in the preamble…if a chronic form of Lyme is acknowledged by the infectious diseases society, then it there is a very good chanve it will have postive ramifications that filter through to the field of rheumatology and may be the start of something really good…like more research into infectious causes for rheumatoid disease.

    Peace, Maz

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

Viewing 9 posts - 1 through 9 (of 9 total)

The topic ‘ Landmark Breakthrough in the Lyme Wars’ is closed to new replies.