Are certain institutions/individuals getting a larger slice of the pie?
Why isn't more invasive tissue sampling done in suspected lyme cases for research? I'd willing donate a joint biopsy. Probably not brain stem, but you know. Have at my tissues, my body is not using them anymore
Does anybody have any thoughts on this? I have been trying to read so much after I got diagnosed, and it IS hard to read through scientific papers.
But if I mention that there hasn't been sufficient research, the naysayers that I know say there are dozens of studies that disprove persistence, and saying that there is a lack of funding is "conspiracy theory stuff."
-------------------- *Man did not weave the web of life, he is merely a strand in it. Whatever he does to the earth he does to himself- Chief Seattle, 1854* BullsEye 2005 Dx Lyme, Babesia, Bartonella, EBV Posts: 41 | From New England | Registered: May 2015
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posted
Thank you if you have time to read this! Just trying to see other peoples opinions. I have lots to learn. Been insulted a lot by regular people, doctors, etc.
I'd say part of my family respects my Lyme diagnosis, and the other half, think I am getting scammed. I hate how people think they can interject on your experiences.
-------------------- *Man did not weave the web of life, he is merely a strand in it. Whatever he does to the earth he does to himself- Chief Seattle, 1854* BullsEye 2005 Dx Lyme, Babesia, Bartonella, EBV Posts: 41 | From New England | Registered: May 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If you want to spend your time with others' thoughts you will not have time to seek out the truth and find the best treatment for yourself.
Likely, no one in your family is an expert. Even if they were, no expert is in a bubble. There is much to learn, so very much. But there is a group who really has gone far in this field and it is most certainly not the IDSA, rather, it's ILADS.
You have to strike out as your own person in this. And you won't make it if you have to prove a darn thing to anyone. Seriously. Very seriously.
If they want to study more about this, great. But you do not have to answer to them. It's impossible, anyway. This is the most politically charged quagmire anyone could imagine. You just can't get caught up in this fight.
If you want to understand more, I would start with ILADS. There is wealth of information there. For starters:
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Imo the powers that be make more money treating our symptoms than they would if they cured us. Pure greed. Nothing to do with "do no harm"
Guess i have my bitter hat on tonight
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
HA! I have a bitter snow suit I have to wear when reading the nasties. Complete with mittens and a fuzzy hat with a string and fuzzy ball on top.
Actually, I am working on a paper now asking the same question Andromeda.
My conclusion so far is they, bad boys, are getting money to do good and much needed research, but we, patients, doctors and legislators, aren't overseeing the use of it.
And the bad boys aren't doing as instructed per Lyme related bills that have already been passed. It is like they own the world and nobody, they think, can stop them.
The other note... we do get a good amount of money allotted, it is just wasted and misdirected, like for example, vaccines rather than a cure. Millions go into clinical trials for vaccines, then they are no good, like the Lyme vaccine.
If I remember right, over $3o million goes into just one clinical trial and at least 3 trials are needed per new product, like a vaccine. Don't quote me on that, I will have to double check that figure. But, you get my point.
I am not making sense to my own self right now, too tired to think or type, so will try again later to respond better.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Just stumbled on it when looking for something for Gretta...
Quote... This resulted in cost totals of $73.9 million, $39.8 million, $46.5 million, and $118.6 million for the pre-clinical phase, Phase 1 trials, Phase 2 trials, and Phase 3 trials, respectively.
I would add that up but I am so tired I am about to fall face first into my desk, so will leave that to someone else.
posted
It seems as if there are plenty of people willing to research it, I just wonder who is allocating the money.
If the CDC/NIH thinks its case closed on lyme, it would not surprise me to find out that they are rejecting all much needed research on that grounds.
I wonder what threshold needs to be passed before they rethink the amount of funding and who gets it.
The "top" lyme researchers, really aren't putting anything out interesting, it just affirms their preconceived beliefs or, is so vague i don't even know what they were trying to accomplish.
Probably that's the point, just churning it out to pretend they are on top of it.
The most interesting thing to me is, how those who ascribe to rare and easy to treat, they don't have any more "evidence", it just seems like they are going on a historical bias for that position and lack of definitive proof, either way.
Antibiotic persistence has animal studies and clinical evidence. Much more illuminating than the ideas put forth by the old guard.
-------------------- *Man did not weave the web of life, he is merely a strand in it. Whatever he does to the earth he does to himself- Chief Seattle, 1854* BullsEye 2005 Dx Lyme, Babesia, Bartonella, EBV Posts: 41 | From New England | Registered: May 2015
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I do believe most of us have chronic lyme. But originally getting lyme set our immune systems back or made them hyperreactive causing high inflammation either way.
I'm starting to see less & less people who've had chronic lyme getting better on Dr. B's protocol which leads me to believe it's just triggering dormant infections, yeast, metals, encephalitis, bowel inflammation, MTHFR gene activation & causing those to be the problem, not the lyme itself.
This is such a complex issue that I think the lack of money is twofold.
#1 is money...Chronically ill people are a gold mine for the pharm, insurance, dr trifecta. It's too profitable for the problem to be fixed.
#2 We haven't identified the problem. I think that once we rename it as something like Chronic Inflammation Syndrome or Dr. H's MSIDS.....That will be when we can demand money because there's way too much grey area.
Basically I think we've misnamed why we are all sick & that is why we cannot be heard. Not to mention, I know bartonella is/was worse than lyme for me. But I have antibodies for so many viruses & bacteria. It's hard to single out one and say that is what is making you sick.
Also, most of us are too sick to stand up for ourselves and fight. Squeaky wheel gets the grease & we are anything but squeaky. Most are just trying to stay alive or get through the day.
posted
Doctors whom choose to treat rather than research. There is not a lot of money in research period. Government grants are iffy. Academic research requires grants as well. They are out there - applying and getting one is a whole different ballgame.
There are doctors, like Dr. B, who chose to move from direct patient care, onto research in the Tick born disease area. There are other doctors who practice both patient care & research. (my ID doc is able to practice and support his own research team.
Our Lyme community raised money for a special telescope for another researcher. (forgot her name)
Other doctors/researcher have been killed (sometimes suspiciously in my humble opinion) in an accident. Some researchers or really good Lyme doctors have a tick born disease themselves and end up suspending their research and even dying as I recall one or two.
Some doctors are in expensive litigation that was started by insurance company investigations into the validity of their TBD treatment of patients when they chose to take mainstream insurance.
There are other TBD doctors that are advocates at a government level.
My Psychiatrist actually charges $350 a visit if I don't have insurance. If I have insurance, my psychiatrist is reimbursed about $150. Less if on medicare. My ILADS lyme doctor charges $100 less out of pocket without insurance.
There are a LOT of doctors that are into treatment of Lyme for the money. I call them 'Lyme Shingle' doctors. They are the ones who do a bit of reading, maybe take an ILADS course if we are lucky, then hang their Lyme Shingle out and wait for us to flock to them for assistance, especially if we're newly infected or they are the only game in town.
Many Lyme Shingle docs don't know what the heck they are doing. These are the doctors I am wary of and wonder what their intentions are.
I think Minnesota has a lot of Lyme Shingle docs here in Minnesota. An inordinate amount of them Actually. Whether they are frustrated with their general salary made at an established clinic or not being able to give the quality of care in a 10 minute visit or angry at all the insurance hoop documentation they must provide, they probably see $$$ signs as well.
Now, I'm really not going to say ALL Lyme Shingle docs are bad or wrong. There are a lot of good ones as well. Maybe they charge too much for the appointment. It is your choice to see that doctor and pay that amount - even if that TBD doctor is the only game in town. Yeah, you're sick, have your own money issues... I am sure a lot of TBD doctors know this as well. we are desperate people in desperite times.
That's why the good lyme doctors have a long waiting list, care about their patients at all hours of the day and night. They may have on-call hours ect. Or not. They may be understaffed, personally frazzled with their case-loads and should slow down.
Running your own business is difficult! Malpractice insurance, small business insurance, property taxes, building fees. Staff salaries/insurance fees. Phone, electric. Everything costs. Then you have their own salary so that they can can have a home, support their families and be able to have some privileges of what they/we think a doctor's salary should be.
Charging enough to keep your business afloat is hard. I know of a local lyme doctor, who is a shingle doctor, has a physician assistant who assists her with each patient clinic visit. She follows ILADS. She didn't have after hours care.
She is greatly concerned for her patients AND (at last known time) undercharged compared to other lyme docs in the area. She probably doesn't make a heck of a lot of extra and won't be rich. Does she help people get better? Maybe. I personally didn't didn't get better with her and transferred to an IDSA doc out east.
My partner at the time, saw this same Lyme Shingle doctor AND was seeing progress with his lyme disease and bartonella He didn't need critical TBD care, he didn't need 24/7 access to this doctor. It was working for him.
Selecting the right Lyme doctor or alternative health doctor who specializes in Lyme disease and co-infections is a personal journey. Fire the ones that you think are money grubbers and move on.
You wouldn't choose a cancer surgeon to treat heart disease. So don't choose a general practitioner doctor who hasn't been extensively trained in TBD. If the doctor isn't working out, you don't trust them, you don't have a good report with them, etc. By golly, get rid of them! Don't keep dumping money on someone who isn't helping you!
When you pick the right doctor for the right disease, the money you pay out of pocket, especially after you start feeling better, may have been worth the cost.
Until insurance companies are FORCED to pay for TBD and have no legal recourse against doctors who practice ILADS guidelines, we have no choice to pay for out of pocket. Really good TBD doctors will be prosecuted/persecuted if they take insurance. During that investigation, we lose another amazing TBD doctor, again. (Like Dr. Faller potentially).
Insurance companies go after the good doctors, even years after they stopped taking insurance to protect themselves. Discontinuing taking insurance hasn't protected.
Good AND bad TBD docs don't take insurance. Seems like the bad docs also figured out to not take insurance at the beginning of their practice instead of mid-way.
Us that are not doctors or researchers can help. Be advocates at any level, for yourself, for others, in government, in comunities.
Reach out to others when we need support. We can ask questions of our doctors, why this way? What do you think of this type of treatment instead? This doesn't feel right - can we try something else? I read this worked for one person I know, can I try it?
Research on the internet, teach others, share external resource and connections. When others can't and you can, give what you can - all the above, one of the above, none of the above.
Push our doctors to become curious, challenge them. They have access to research doctors, seminars and academic papers that we don't necessarily have. Get them as curious as yourself. Challenge them. They are doctors, human flesh and blood, they bleed just as easy as we do.
Doctors aren't gods, they don't know everything even when it comes to diseases of the human body. Sometimes we know more than they do about a disease.
Perhaps through your question, your doctor will talk to a researcher and in turn the researcher will become interested in a TBD and want to research it instead of another disease process.
Our hearts must be open to other possible routes of infiltration. (Insert Mission Impossible theme song here) LOL
Posts: 138 | From Eden Prairie, MN | Registered: Dec 2011
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Tincup
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