Well, it is not so much a question .....more like a mini news flash! For those interested in the great dilema that us Aussie Lymies face. One little step forward. A year review though :/ seriously. I wonder how mny more people will have it in a year.....or maybe we should just send the Aussie tick population a memo and ask for a years grace while the government get their collective acts into gear:
An interesting plight......a necessary and vital fight! I loved Mualla's comment in this interview "Generations".....because that's what is is all about. The line MUST MUST MUST be drawn in the sand. This far and no futher!!
Thanks for posting these! It sounds like the health officials are inching forwards. I desperately hope that when they finally do acknowledge that Lyme Disease is endemic, they will NOT blindly follow our CDC testing protocols and treatment recommendations. They are already a disaster here, and the disease presentation and even the species discovered in Oz are different than here in the US.
My physician's assistant (in CA) told me they have a handful of Aussie patients who traveled here to get diagnosed and start treatment. There are only a couple MDs they know of who have gone through the ILADS training, but there are more who are willing to learn. My doc does phone consultations with patients and their doctors to reduce the number of times they need to fly here. I stopped griping to myself about the cost of gas to drive 50 miles to their office after I heard that.
The health officials need to get in touch with ILADS to set up local training programs for doctors. Even if they spend a year "reviewing" the evidence for Lyme, they still need to train doctors on how to treat the overseas acquired Lyme patients!
Good onya Jackie. Lead the Charge!! Ha ha.
Rico, my pleasure. I agree whole heartedly and have been researching a lot about treatment recommendations and just want to run past both yourself and Jackie this video I came across.......what are your thoughts on their treatment recommendations as someone progressing through treatment and as someone who is cured. Thanks in advance :-)
To be blunt, I think there is a lot of hogwash in this video ... I don't know the Australian equivalent of 'hogwash', but it's not a good thing.
Just a few notes:
-- The three methods of transmission misidentifies mother-to-fetus as mother-to-daughter, introducing confusion.
-- Transfusion is not listed as a means of transmission.
-- I've never heard spirochete pronounced as spear-oh-keet -- ! Sorry, just being petty.
-- The repeated statement that Lyme 'contains' babesia, bartonella and Ehrlichia is incorrect. Those are separate infection with separate causes.
-- That dog ticks can transmit at least some of these infections (I got Ehrlichia from a dog tick) is skipped over.
-- A 'secondary' set of infections that Lyme brings are mycoplasma, cytomegalovirus, EBV and candida? I think this may be overstepping. Candida is a fungal infection, and while I could buy the idea [but am not certain] that Lyme may induce shifts in body pH that inclines one toward candida, I would not say that Lyme causes it. And to lump all those vastly different ailments (myco, cyto, EBV and candida) into all being little fits of Lyme seems a bridge too far.
-- Somewhere in the middle of things, the video shifts to autoimmunity as being an aspect of Lyme. That harks back to the early Lyme deniers, who claimed (and some still do) that if you still have Lyme symptoms after a couple weeks of antibiotics, then it is your immune system overreacting, not incomplete treatment of the infection. Disagree. This is one of the major differences between ILADS and IDSA approaches.
-- Next major shift is to "antibiotics impair immune function" and do not address coinfections Sorry, but I don't buy that. Antibiotics kill bacteria, and in so doing assist a beleaguered immune system. And while the same antibiotics that are effective against Lyme may not be effective against co-infections, that is not the same thing as saying that the antibiotics 'suppress' the immune system.
-- The closer is a recommendation for 'aggressive antiviral and antifungal' treatment. Lyme is not a virus or a fungus, and while one may or may not have concurrent viral and fungal infections with a bacterial infection (which Lyme is), Lyme will not be cured by antivirals or antifungals, to my understanding.
-- And the icing on the cake -- egregious misspellings: "...decrese nurological..."
So, no, I wouldn't go there. But that's just me. I think the video is trying to sell supplements as treatment, but isn't doing a particularly effective job of it.
Thanks for that Jackie! I can see the many errors that you have pointed out including the spelling.........whooooops! Ha ha.
I suppose the thing I found interesting about this video was the thought that IF viral and fungal co infections were present that they should be included in the treatment. I suppose I am now thinking that because I was positive for EBV, CMV, HHV6 and Ross River Fever back in 2000-2001 that perhaps I should be getting these retested now. Do you think that it would be wiser to tackle the co infections first, then the Lyme, or do it all at the same time.
I ask because being new to the whole treatment process I have lots of questions. Just like after I dug my head out of the sand and decided to tackle this Lyme Disease I went straight to a LLMD instead of asking MD's who had no idea that it actually even existed in Oz. Even in re-reading that last sentence I can see my still evident distrust of the medical profession. I guess I just want to be well informed when I see my LLMD next.....flying across 2 states for an appointment, I want to make the most of my visit. Like all of us dealing with this, I just want off this mountain.
Yes, I agree with you, it's important to take into account ALL the ailments one might have and to treat them in an orderly and sensible fashion. I had Lyme and babesiosis (a cousin to malaria), and my doc treated the babs first, because it was a fairly sure kill, and then turn to Lyme, which can be more of a winding journey.
It takes a doc who appreciates the differences in the various diseases to set out a game plan that makes sense, and the guy in the video was just engaging in a random food fight, imo.
A little distrust is a healthy thing, esp when it comes to Lyme and the MD ego. I did what you did: after my ~20th clueless doc finally, in desperation, ran a Western blot on me (and it came back positive!), she then kindly told me I couldn't possibly have Lyme. Yeah, right. I have an old friend who has struggled with Lyme for a very long time, so I knew immediately to take it seriously, grabbed the positive test result, and found an LLMD. I had doubts about the LLMD along the way too, which I think is a healthy thing, because we are encouraged to believe that the Docs Know All and We Must Heed. Uhhh, wrong.
So keep a weather eye, and you'll do fine. Hang on! It's doable!
I have the same complaints about the video that Jackie has. It is just sloppy and has too many inaccuracies. They also fail to mention that the part about how Lyme triggers an autoimmune reaction is a theory, and not proven yet. It is also a theory numerous researchers are investigating for other autoimmune conditions, but have yet to prove.
I would not be interested in going to a medical clinic that produced this video. If their intent is to promote their work, all they have done is convince me they are sloppy and are off the mark on quite a few things about Lyme. (BTW, no one has proven sexual transmission yet. It is also a theory.)
And the narrator saying "spear-ee-oh-keet" does grate on me. Every time he says it he's saying, "I don't know what I am talking about!" (In the US it is pronounced "spy-ro-keet.") The part about IV antibiotics suppressing the immune system...I have never heard that before and I don't believe it is true. I also have not heard of antivirals for EBV, et.al. I have asked and I have been told there aren't any. Also, it is not "related to" 300 other diseases. From what I have read, Lyme can have similar symptoms to about 100 other conditions, but I have never seen a full list. Mimicking something doesn't make them related.
Unfortunately, it is presentations like this one that give ammunition to the Lyme deniers who claim that Lyme treating physicians don't know what they are doing and are ripping people off.
Now that I've bashed the video...on to the next topic.
It sounds like you are interested in the integrated approach that combines appropriate supplements with antibiotics, tailored to the individual's needs. That is also the route I took.
You can read about this integrative treatment philosophy in a book called "Insights into Lyme Disease Treatments," or follow this link to read the first chapter.
My doc started with a mild drug for Lyme, then added in one for my Bartonella a week later. Usually he waits three months before starting any IV meds in order to knock back both Lyme and coinfections somewhat first. He wants to avoid horrible herxes that can be disabling.
Every appointment, we focus on what's bothering me the most and we focus on that. They (the M.D. and his P.A) rotated out meds that caused problems or didn't seem to be helping me. I have also taken a wide variety of supplements and scrips for my extensive GI problems, as well as anti-fungals and anti parasitics. I am on some meds for symptom control, too, including a sleep med that is also an antidepressant, a beta blocker for my elevated BP and tachycardia, and an anti-fatigue. These last three gave me a great deal of relief in getting my heart rate down, helping me sleep at night, and perk up and feel better during the day.
I know someone else who sees my doc and she has Lyme with Bart and Babs, and yet we have had completely different treatment protocols. We had some key differences in symptoms and drug tolerances and different secondary issues that took us onto different tracks.
It is mind boggling to realize how much knowledge it takes to do this. It is light years beyond the "standard" treatment of 4 weeks of Rocephin and that's it. Treating Lyme and coinfectIons is a specialty unto itself, as it can affect nearly every system in the body and trigger many related issues.
I am glad you took it seriously. It is a serious disease complex and many people sorely underestimate it.
I am curious as to what the health officials think that people with Lyme are supposed to do for the next year while they do their investigation. Just be miserable and untreated while the bureaucracy grinds along? Do these officials even have any Lyme knowledgeable patients and experienced Lyme treating physicians advising them?
I truly hope they are not looking to follow the IDSA or European countries' approach of dismissing the serious symptoms, under treating the disease, and ignoring coinfections. Already it is clear that the CDC surveillance interpretation of the Western Blot is completely inadequate for Aussie Lyme. It was developed using Borrelia Burgdorferi and never tested or validated using other species or even the same species from other ticks than the Deer Tick.
This situation foreshadows the battle warming up here when Obamacare kicks in. I imagine the IDSA is rubbing is grubby little hands, lining up to be 'the' authority which the govt will use when deciding what treatments to approve or disapprove for various ailments.
Nothing is as expensive as when it's free ... and healthcare infected by politics and self-interest is right up there at the top. My health insurance premium has gone up 50% in the past year, in anticipation of government mandates for added services -- today I read that acupuncture will be covered under all insurance policies. Whether you want it, need it, use it or not, you'll be paying for it. No choices there.
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