Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I found a clinic.
ILADS doctors. IV abx. Nutritional, rife, photon, immune support.
It's 50 thousand dollars.
50 thousand dollars is a bit more than my *last* dollar.
Would you do it?
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Does that include your rent in a new place / housing / travel / food ?
As for all those modalities - certainly not all together or even on top of each other. You mean that these are the choices there?
If you mean over time, the course of treatment would add up to that, maybe (for a few years' treatment) but if you are to hand over that up front, something would be amiss with that.
Still, many questions and the sources that led you to this place would need to be considered as well.
At that price, I would assume you would be buying a rife machine of your own.
And, still, a lot more questions.
What do all those who live in the state where this is say, at all the various lyme support groups? And in the adjoining states. Ask all the smaller groups and also each state group in that geographic region.
There would be about 20 - 40 hours of research, I would guess, as you find out more.
If they have authored articles or books have you been able to get all those? -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
umm no not me...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
It would include my stay there, but not travel or food. Full and complete care, including abx etc, four hours of treatment a day -- for two months.
I don't think they've authored anything. But they were pretty adamant about keeping up with their ILADS certification over the phone, and as far as treatment goes it was exactly in line with the protocols I've been reading over and over.
So they're really doing it.
But they don't take insurance, and that is a whole lot of money for something that *might not work.* Regardless of how knowledgeable they are, there are no guarantees are there?
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There is no ILADS "certification" that would require "keeping up". It's a membership organization that does include renewing membership but no certification updates.
That sounds suspicious.
Two months' time is not going to take anyone to a recovered state. That kind of money should cover treatment for two years or so, not two months.
Treatment may take anywhere from a full year to four years, as a rough estimate. It won't be any faster than a full year and it could be far longer than four, depending upon many variables.
To treat a "simple" case of lyme would be minimum of 7 months, anyway, according to article I'll link in next post.
Four hours of treatment a day also sounds suspicious.
Is there a website? It's fine to post websites if they are what a clinic posts to the general world. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Yeah, I'm pretty sure they said the word "certification" but they meant they keep up with all the conferences etc. Which I realize anyone can do.
Also they were very clear that two months was not enough time and I would still have to find a doc at home to continue treating.
Clinical Advisor, 2007 [By a well respected ILADS member]
[section] Treatment dilemmas . . .
. . . Borrelia burgdorferi has an in vitro replication cycle of about seven days, one of the longest of any known bacteria. Antibiotics are most effective during bacterial replication, so the more cycles during a treatment, the better.
Since the life cycle of Streptococcus pyogenes (the bacterium that causes strep throat) is about eight hours, antibiotic treatment for a standard 10 days would cover 30 life cycles.
To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks for the link. This will really help others better weigh in on the AZ clinic
as you start calling around to all the lyme support groups in AZ and surrounding states. Good luck with your search. But, no, I would not do this. Not at all.
I'd come across their link recently. Looked over it again and am clear that I would not suggest anyone go there. From the standpoint of just herbals, no one there has full training in naturopathic medicine. I'll just stop there.
If you lived right there and had lots and lots of money, yeah, some of what they offer might be of help. But there are many gaps in their knowledge base and the cost is just so to the moon. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
This is an article on their blog that outlines their treatment philosophy. They certainly seem to be saying the right things.
What is your reasoning, Keebler, for the thumbs down?
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- From the standpoint of just herbals, no one there has full training in naturopathic medicine. I'll just stop there.
Medical Acupuncture (often just a short course) is NOT the same as having attended a fully licensed acupuncture college where herbal education is included. Medical Acupuncturist can be a nice help but is limited and is not the same thing as a L.Ac. Licensed acupuncturist.
Homeopathics have nothing to do with herbal medicine. Just to be clear.
But don't take just my opinion or just anyone else's. Talk to about fifty people and then you'll be better able to determine.
If you can't find at least fifty people in AZ and surrounding lyme support groups who can tell you more about them . . . oh, maybe there won't be fifty you actually talk to but there should be many leaders of the lyme groups who can rely to you experiences of members of their groups.
I can think of at least 6 other excellent top LLMDs who would be far better than this clinic and your money would go a lot farther.
Yes, they say a lot of the right things and they post some excellent books. Great. Seems like they "get it" but they do not have the experience and it just feels like they are riding the coat tails of the authors' books they list.
They may be good but not good enough to shell out fifty grand for two months' time.
You will find out more as you start to talk to all the lyme support leaders in the entire SW. You'll find out much more that way. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Well, that sure would be nice since it seems I'm about to part with all of it. I'd rather do that over a longer period of time .
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
btw, there is *one* thing that was a little offputting. Search on the director's name in Google, and you'll see it immediately.
On the other hand, I can see how it could be a good option for people in the Yolanda Foster category. They handle everything, you don't have to do anything but take treatment. They see a lot of Canadians who have even less choices and support than we do. Apparently.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Don't just take my opinion. It's just one opinion. I'm just trying to offer a few points to consider. It would take MANY hours of homework to explore more.
Google can be wrong, too. Oh, it can lead to good detail but be careful about jumping to what just one Google hit says.
Start with the local lyme support group leader, move out from there. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
50K?? They're probably laughing all the way to the bank.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Nope. I wouldn't do it. Too expensive and you'll still have to find your own doc eventually.
The dry air probably helps in Arizona. Humidity makes me worse.
Hey, if you have 50K to burn, go for it! I'd love to hear how it went.
It might be less expensive just to take a vacation for a week to Arizona and see how you feel.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
consulting hynotherapist . . . a support group for patients at our Scottsdale integrative medical center suffering with any chronic illness, exploring the hidden causes of chronic illness. . . .
. . . When something occurs which is so traumatic the conscious mind cannot deal with it, the information that comes into the amygdala, stays there and never comes up to consciousness. This is why people have buried symptoms.
The body's innate wisdom knows it needs to deal with these memories because they make the body sick. If it is an issue of powerlessness, for example, the symptoms may manifest in the abdomen.
If a person was beaten as a child, the physical memory and resulting illness may be stored where the body was beaten. . . . . . .
[my thought on this page: they will blame the patient big time if they don't get better. I've seen this many times over the years. Yes, indeed, our thoughts, our past experiences can matter but where there is infection, there is not always this and this page sounds like potential trouble for those with chronic stealth infections.]
A Quantitative Electroencephalograph (QEEG), sometimes referred to as a "brain map," is a procedure where EEG (brainwave) data
[my thought: huge waste of your money if they do this. you know you have lyme. lyme will change brainwaves and no amount of neurofeedback will help train your brain unless and until lyme and TBD are properly treated.
huge waste of money. I know. I did this. 3 QEEGs were emensely helpful to show site of seizures in my case that EEGs missed.
however, many moehts if neuro fdback did not help cause I got no tx for lyme. hands humb sorry.]
. . . GENETIC make-up as well as their epigenetics - how their gene expression has become modified through exposure to life.
[my thought: indeed, genetics can mess us up. But you know you have lyme, you don't need expensive genetic testing.
MTHFR detail might help but go to 23andMe for that. Much less expensive.] -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Agree with Keebler. Bottom line is you would be spending 50K that wouldn't put you in at least a state of remission and have to pursue ongoing tx.after the 2 mos of their tx.
Given the severity of this disease, it's understandable why this would be appealing. Is there a good ND or LLMD in your area?
Finding someone who is trained in ART and has knowledge of treating parasites as well as other infections would be my choice. Just my view. Have you read Buhners book on Lyme and his new chapter on the importance of antiparasitics?
Wishing you healing in this difficult journey.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Here's the thing about Arizona;this woman explained to me today. In Arizona, you can't lose your license for offering IV antibiotics in whatever way you see fit.
I did not really get the whole gist of it but it has something to do with how they're under the umbrella of an integrative medicine umbrella or something.
So what *appeals*, really -- is that I am scared out of my damn mind and every day I sit here with my symptoms I get more and more convinced I need that. IV antibiotics. Straight. No chaser.
And the problem is, this is impossible to get. It's impossible to get it ordered, it's impossible to pay for long term, it doesn't exist except in rare cases where you're almost dead anyway.
So that is what costs 50K. Direct, aggressive, fullscale IV chemotherapy with no problems from the federales. No more begging for 30 tabs of minocycline. No more arguing with some dense system over what you need and why.
50K. Clean and simple.
I don't have it to burn. It was for a rainy day. But I can sure see the appeal.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This is not cookbook medicine. There is no one recipe. This place sounds like they are offering cookie cutter treatments and a lot of fluff.
Fifty thousands dollars is neither clean nor simple. In two months time, with this clinic, you will be no better after the first month back home but so much poorer. What then?
If you actually had 50K, you could plan a much more likely approach.
Also, please don't think that you would require IV antibiotics. You may not. But you would need to be in the hands of someone VERY experienced were you to do that.
No one gets better with just IV antibiotics, anyway. No one. There is no "straight, no chaser" where lyme is concerned.
Lyme requires complex combination approaches over months and years. Best to be guided by a LLMD, a LL ND, or set out a systematic study with some of the top LL authors such as Buhner.
Consider rife.
It's normal to be scared and flustered and want to take the easy way out but that is more so in easy as you approach it with thought and logic than easy in just go, do, get it over with of smoke and mirrors. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Yes, Keebler, you've honed in on the BS for sure.
But that's the problem with all these "centers" I think. You have to drink a little koolaid no matter what the core "disease" is to get to the medicine.
And they actually do have the medicine. They're not selling blue lightbulbs. They've got Rocephin. This is a drug deal.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
glm, I have no idea. I've been romancing LLMDs since February. As far as I can tell...the answer is no there are not.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Will they cover the cost of gallbladder removal? That's a very likely possibility with a rush approach with Rocephin. Of course, I would hope they would also include the drug to help prevent that but there is no guarantee.
Anytime one starts IV rocephin, they should know there is a risk to loosing their gallbladder.
Will they take care of any emergencies at all that might arise from the IV insertion point? Just things to consider. You could come to be in debt far beyond what you might expect if they don't cover all possibilities.
Not trying to rain on your parade, really. Just want to be sure you have a good umbrella, rain boots, a good slicker, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
. Actually Keebler I was waiting for the right person to come along and talk me down off the ledge.
No one has to stay at this facility if they want to cut the therapy short. You can stay for a month, you can stay for two weeks.
On the other hand...this lady told me, you can stay as long as you want.
Ha. Welcome to the Hotel Arizona.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not one of the medical staff has completed the ILADS physician training program. No one.
Not one of the staff who would be treating you is even an ILADS member.
The only medical staff member who is an ILADS member is the pediatrician. Still, not the same as having completed the ILADS physician training. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
If that's true then the lady on the phone flat lied.
Did you see what I was referring to about the director?
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
Casewatch -- be very careful not to believe all you read here, he is very caustic and often spins things out of context. He's out against so many good doctors, actually.
Though, there may be also some who are not and he can just as well point those out.
I do not have time to read through this but, actually, if he is after someone they must have done something good. He's got a terrible reputation for going after doctors who try to think outside of the box.
Just can't comment on the specifics of the case. Best to read from a better site than his, though, to find out more. While he appears to post a copy of the state report, best to read it at the actual state website.
Even then, remember CONTEXT. Few things can be taken at face value to explain full details of any situation. "unprofessional conduct" may not be at all what we think. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Personally my decision has been to take my "$50k" and use it to take time of work and treat myself. This way I can just focus on treatment, not have work pressure and can herx my face off like it's nobody's business. I'm making steady progress and think it was the right decision.
I have opted not to go the antibiotics route though so I don't need a Dr. to prescribe anything. IV antibiotics have their place but there are also a lot of stories of them destroying people's GI tracts, where most of your immune system resides.
In my case I have a long time chronic infection, which I don't think is possible to cure quickly with current treatments. I think once these infections get into the bones you're in for the long haul. If you were infected recently a short in-patient treatment might be more effective.
If I were a recent case and I were to go that route I'd probably go to Germany. It seems they are way more advanced in their treatment approaches than here in the US.
Posts: 131 | From CO | Registered: Jul 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A little more about that but still, just touching a few leads.
To consider: she gave an ill toddler about 2/3 of a teaspoon of vitamin B17 that contained some naturally occurring cyanide as in apricot pits, however, it's not that simple. I don't intend to wrap this up with a ribbon but, as you asked, while very sad & tragic, of course for the poor little child and the family, it's not so simple to conclude egregious wrong-doing.
Homeopathy Doc Gives Up Florida License After Toddler Death
October 16, 2015
The Florida Medical Board has reprimanded and fined a physician whose patient — a toddler — died soon after being given a dose of amygdalin (also known as laetrile) to treat her advanced eye cancer. . . .
. . . The Florida board took action against Dr Grout more than a year after the Arizona Medical Board reprimanded her for her role in the March 2013 death of the 18-month-old girl. . . .
. . . Arizona Boards Split
Dr Grout was licensed in Arizona by both the Arizona Medical Board and the Arizona State Board of Homeopathic and Integrated Medicine Examiners. Only the allopathic board reprimanded her; the homeopathic board cleared Dr Grout in what Myers called a thorough investigation. . . .
amygdalin -- 3.4 milliliters
[my note: that is 0.69 teaspoon . . . so between 2/3 and 3/4 of a teaspoon but it does not state the actual pharmacological dose and what else was in that liquid]
[my note: so this is not the best page, in my opinion as there are some things here that I question. But I have to stop. You can find better sites.
Maybe try "Townsend Letter for Doctors" and cross search with "Amygdalin"
but the bottom line is that she was cleared by the Arizona State Board of Homeopathic and Integrated Medicine Examiners and this is a board that would understand all about Amygdalin.] -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- sorry, project . . . we must have been typing at the same time.
Jordana, be sure to go back up to see project's post that got sandwiched. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
What I think I remember is that this was one of those in the flood of cautionary/industrial passion plays about the Evils of Laetrile.
Which in fact does cure cancer in extremely controlled environments.
I was sorry to read it. She probably thought she was doing the right thing.
On the other hand...babies, and cyanide? And the Hotel Arizona?
That 50K looks a bit more incongruous when you prop that story up next to it.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- We do not know the dose, though. Be very careful about making any judgments of this case without all the details - and the education to know all about it. It may well have been a homeopathic dose in liquid. Even if just your own personal judgment of this case, decisions of this magnitude should not be made on a few details.
She was cleared by the Arizona State Board of Homeopathic and Integrated Medicine Examiners and this is a board that would understand all about Amygdalin and its use for the patient.
My thoughts on this matter are entirely separate from my thoughts on the other, though. For the purpose of traveling there from out of state for lyme / TBD treatment, my opinion is still that they do not appear to be experienced in as wide range of options as I would want. And the cost is outrageous with some treatment parts unnecessary to treat infection. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Hi project;
You could go to Germany. I could go to Germany. Really, if you believed your life depended on it you'd get there.
I'm not so sure though that what they're doing in Germany is that advanced or if it just seems like it is, because we want to believe.
I was just reading a post by a woman in the UK the other day who was horrified that the US had better testing available than the NHS. For all we know Arizona is to Saskatchewan as Germany is to us.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
What's interesting is that this lady seems to have a pretty good idea which ones are the good drugs.
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This appears to be the main focus, not Rx:
. . . At the fall 2015 meeting of the American Academy of Environmental Medicine (AAEM), a presentation by the chief science officer of Cyrex Labs . . . .
. . . What this means is that unless we are able to deal with the autoimmune aspects of infection with Bb, and decrease the total toxic load to which we are also reacting, even with adequate antibiotic therapy we may not completely eliminate the symptoms of so-called chronic Lyme disease.
An emerging therapy for these chronic Lyme symptoms uses a technique of immunotherapy – similar to allergy shots – which allows the body to tolerate its own tissues that are cross-reacting with the Lyme organism proteins.
The treatment may be with extremely dilute solutions of the Lyme organism proteins, antigens to specific foods, or to organisms growing within the gut.
Whichever tissue or organism is causing the body to overreact can be used to help the body calm down its reaction. The principles are those of standard allergy/immunology, although the technique is more individualized. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I'll treat you for the low price of $11,344.78. That is how much it costs to buy the boat in Steve's picture.
posted
My personal take is that Germany/Switzerland > US > Canada, UK when it comes to Lyme disease treatment.
Canada and the UK are miles behind and getting treated in Saskatchewan probably just involves hypothermia.
If you look at the top US LLMDs, D. K in Seattle, Dr. J at Hansa center. They both studied in Germany/Switzerland.
The US LLMD approach is basically just take the toolkit of conventional medicine (full of antibiotics), and throw it at the patient's head. Even most US patients expect this, it's a difficult bacteria so please give me the most antibiotics possible in as short a time as I can handle.
In Germany and Switzerrland they have a long standing tradition of using herbal and homeopathic/energetic medicine to restore the patient's bodily terrain, which is ultimately necessary for a lasting recovery.
Posts: 131 | From CO | Registered: Jul 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I would go see Dr K. in Seattle...
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I would encourage you to find another way to treat yourself that does not involve spending the whole $50,000 or a significant amount of your savings all at once.
Treating will take at many months at the very least.
Try to see a doctor that you respect. You mentioned that you liked Dr. K, so get on the wait list, and try to see a doctor trained by K in the mean time.
If there are a couple Dr.s that you respect, do the same thing. Start on the wait list, it may be awhile so you can also request another doc trained under these too!
You can see LLMDs and or an LLND so you can safely combine alternative medicine like herbs and supplements with antibiotics to support your body while treating Lyme & Co's.
Remember too, besides Lyme, life in general can bring unexpected expenses. So if you can, it would be nice to have some kind of buffer/ cushion to fall back on when needed.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
I think kam went there .. they just took her money.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
You are all very reasonable.
Can This just Go Away? (No. Not for 50K, not for 100k.Maybe not for any amount of money, or ever.)
Posts: 2057 | From Florida | Registered: Feb 2015
| IP: Logged |
Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Sure Lymetoo.
Drugs are a cash business.
Sometimes they're worth double the price, sometimes they destroy the world as you know it.
Some people probably do get better there. But until something changes regarding this disease it might only be the billionaires left standing.
Posts: 2057 | From Florida | Registered: Feb 2015
| 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!
![[Smile]](smile.gif)
.
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic