posted
I hope this isn't used by the powers that be to support their take that many positive lyme tests are false positives and so they justify dismissing them.
Anyone know if Byron is any better?
Posts: 590 | From Canada | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Hiker53,
Did she dx you with lyme? Do you not have lyme? Wondering.
============
This is so very sad.
I think there is far more to this than in this article than meets the eye.
There is no way the ER could have known if someone did not have lyme. Something is very wrong with that, alone.
As I understand from an article in another thread yesterday, these patients did test positive for lyme.
We need more details about this but it sure looks like a sad, sad day. Good luck now finding any doctor who will treat.
Two Kansas City couples who were falsely diagnosed with Lyme disease have won verdicts totaling $30 million against the Florida lab that tested their blood.
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
The timing is just perfect don't you think??? Posts: 3975 | From usa | Registered: Aug 2007
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I don't know Dr. R personally but I have heard many good things about her. When I read the list of things in the news story, I thought that everyone should be so fortunate to find a doctor willing to identify and find many of the causes of their illness.
To me, it sounds like a great place to go, to be seen, and to get to the bottom of many issues that plague us.
It boggles my mind that people jump on the bandwagon and are ready to say bad things right away without knowing the facts.
If the powers that be and those that don't want to believe Lyme is their real issue keep doing these sorts of things, we'll all truly be left as our own doctor as no one will see us anymore.
It sounds to me like Kudos are in order to Dr. R for being brave enough to do what it takes to help us.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
According to the article the woman who started the lawsuit went to the doc in February of 2008 and obviously continued seeing the doc if she was still on the prescribed meds in January 2009 when she went to the ER.
I don't know about the rest of you, but hubby has been to many docs and if they were ducks we didn't go back -- or sometimes we went to a 2nd appointment, but it didn't take 11 months to decide the doc had misidagnosed him. And hubby has had probably 25 or 30 ER visits in the last 8 years since he got sick -- can't remember that he ever got a diagnosis from the ER that made any sense.
Personally I don't think I would ever take hubby to this doc because I am just not convinced that highdose IV antibiotics work for everyone or are the only treatment option -- plus for us insurance would not pay for treatment in this clinic.
Regardless, I sincerely hope this case does not become another travesty like the Dr J case (kids LLMD).
I also noticed that the lawsuit mentioned other patients of the clinic who also did not have Lyme disease and were treated similarly to the one who filed the lawsuit. The argument that the clinic diagnoses everyone with lyme is similar to the argument that IGeneX tests are positive for everyone. Most patients going to this clinic most likely already have a diagnosis of Lyme from another doc or I would guess a very high percentage do.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
This makes me sick. The person in the article does not even know how to spell Lyme disease - so how in the hell does she know she doesn't have it? It appears that she is a spineless person who believes whatever she is told - in this case, what she was told by the ER people. If she would do some of her own darned research, she would know that she was herxing and that she probably DOES have Lyme.
I am grumpy and this article made me sick.
It seems to me that, if the tests are positive for these infections, then it is NOT an "overdiagnosis" - it is a diagnosis. What is an overdiagnosis anyway? That is ridiculous. Is it her fault that the person has a lot of infections? That the Lyme made this person susceptible to more infections than they would like? Or than are medically "acceptable".
It reminds me of when I first got sick and I had been in a 3rd world country. 6 months into me nearly dying I diagnosed myself with Lyme and demanded treatment and I was correct that I had it. However, I also had a positive test for trichinosis that my doctor overlooked. When I saw it and questioned about it, my doctor s aid "oh yeah, that is interesting isn't it? But we won't treat you for it because we already know you have Lyme disease and there is very slim chance of you having two diseases". So they ran another test to confirm that I didn't have trichinosis also - and oddly enough they lost that test, as did they lose the next one, and finally they didn't "lose" one and it came out negative. Many months later.
So, talk about quacks. It is not Dr.s like Dr. R. It is docs like my lovely ID docs that almost let me die back then.
[ 05-29-2009, 12:51 PM: Message edited by: luvdogs ]
Posts: 588 | From Rhode Island | Registered: Jun 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Whew, 21 medical disorders were Dxed? The LLMD sounds thorough, but I'm not sure I can buy into that even.
I have no doubt it's a witch hunt though due to other issues happening.
I agree many other non-LLMDs are more than satisfied to let a sick person shrivel up and die a horrid life w/o remorse. On the other hand, it's a sure thing docs do prey on the sick at times to make big bucks.
There's two sides to every story. Ya'll say the person sounds pretty uneducated not to question treatment earier..lol. HOW MANY times have I heard here it takes a year, two years, three years to see improvement? Many are guilty. I truly believe LLMDs probably over-diagnose a lot and it's bothered me from day #1, but in my heart I believe the people that see them truly are ill.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i've actually heard some questionable things about her-but i agree with scott that if you go by what the article says-it seems she was doing her job-much better than many other and almost all er docs.
is bells palsy a sx of hyper thyroid???
bells palsy is diagnostic for lyme-no matter what the test results-even the idsa agrees.
er probably wants a pos elisa and cdc pos wb or "she doesn't have lyme"
i do wonder how you would dx fibro without touching someone tho...unless it's changed you had to have tendeness in a number of specific areas. maybe they chnged it tho.
it will be interesting to see what happens.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm sorry, but some of those Dxes can't be made w/o physically touching someone.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm sorry, but some of those Dxes can't be made w/o physically touching someone.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
so this long link will then go back to NORMAL width vs. super wide it is now? thanks my friend!
Betty, I'm curious - Is your browser window open all the way? I have mine open & I haven't been noticing that problem since they changed the system. It's been splitting the long links into two lines now.
I just realized that you might have it fully open, but be using larger font? Perhaps that could cause it to still be too wide.???
Please let me know if that's the case because if it's still giving you a problem I'll stop taking shortcuts when I'm rushed.
I had stopped shrinking links because I thought it had stopped causing problems.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
How exactly DOES one find out how many different symptoms/diseases other patients of their doctor have, if not through INSURANCE COMPANIES?
Something about this smells bad, smells REAL[sic] bad!
quote:diagnosed her as having "21 separate disorders, including Lymes disease (sic), hypercoagulation, disease of the central nervous system, beta strep, chronic bronchitis, chronic sinusitis, leucopenia, chronic fatigue syndrome, systemic candidiasis, insomnia, corticoadrenal insufficiency, depression, generalized anxiety disorder, Raynaud's syndrome, hyperinsulemia, fibromyalgia, urinary tract infection, proteinuria, tremors, general symptoms of memory loss, and nutritional deficiency ... whooping cough, elevated triglycerides, parvovirus, iodine deficiency, vitamin B deficiency, heavy metal and bromide toxicity, Bell's palsy, and other diseases and disorders
1/2 of those Sx , the patient would have to TELL the Dr. they had, many others have more accurate tests.
quote:on Feb. 20, 2008, HKAKC employees drew more than 40 vials of blood from her
40 vials?!!!! I've never heard of anyone having 40 vials of blood drawn in one visit. Can they even do that?!!! To me this does not sound like someone inclined to be truthful.
No sir, I don't like it. It stinks of something.
The ER?!!!! Pul-lease, I had Optic Neuritis diagnosed as a Corneal Abrasion in the ER! What level of experience do the majority of the doctors in the ER have? Does anyone know?
They're going to try and tell us that doctor drew 40 vials of blood on a patient with thyroid symptoms and DIDN'T RULE OUT hyperthyroidism?
Is it possible that supplementation for an IODINE DEFICIENCY may have caused hyperthyroidism?
I'm not buying this for a minute. It's BOGUS! (IMO)
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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so this long link will then go back to NORMAL width vs. super wide it is now? thanks my friend!
Betty, I'm curious - Is your browser window open all the way?
I have mine open & I haven't been noticing that problem since they changed the system. It's been splitting the long links into two lines now.
I just realized that you might have it fully open, but be using larger font? Perhaps that could cause it to still be too wide.???
Please let me know if that's the case because if it's still giving you a problem I'll stop taking shortcuts when I'm rushed.
I had stopped shrinking links because I thought it had stopped causing problems.
ali,
yes, i have the window fully opened all day for everything.
yes, i use LARGER font size but on cases like this, i use control/ - to decrease the size but when doing that it gets down to like size 8-10 and that is just the text; does NOT show who posted the reply.
it splits link into 2-3 rows but still runs SUPER WIDE...
so yes, it's still a problem for me; my comprehension skills are lost and i can't "toggle" back & forth per line and retain any memory of what is being said.... DARN.
ali, thx for asking and helping severe neuros like me
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
The thing is, with such a long URL, this page takes up the entire width of my computer screen.
A Tiny Url is much easier to read and track when a long URL puts it over the edge. All it takes is one really long URL in one post to really stretch this out for the whole thread.
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I personally went to see Dr. R in the fall of 2008 and would never ever work with her. She ran tests I asked not to have run as they had already been runa few months earlier. And she took over 25 vials of blood from me.
A friend of mine who went to her clinic and did not get well said she used Bowen to diagnose her. Dr. R does not use Igenex.
She ran no lyme tests or co-infection tests, but said I had bart and lyme (I did have a positive from Igenex on lyme earlier) plus a multitude of other problems which I do not have. She said I was deficient in vitamins--I am not. She said I had vascular problems--I do not. A spect test and a vasculitis test proved her wrong. She said my CD57 was low. It was not.
She wanted a phone consult with me 3 months after the in person consults (her nurse examined me, not Dr. R), but would not give me my test results prior to the phone consult. I like to see the tests and be able to ask questions. I finally had to threaten her with a lawyer to get my test results which ended up being over 20 pages of labs tests that even my neurologist could not interpret from labs that were not FDA approved and the tests were not FDA approved and, so of course, insurance would not pay.
She then cancelled my phone consult. She would not tell me how she breaks the biofilm she claimed I had, so I simply asked patients as they came out of the I.V. room and they all had the same answer--an over the counter product which had ingredients in it that she knew I was allergic to.
She wanted me to sign on to move to KC and do I.V. antibiotics before I even had the lab results, which of course, I would not do. She refuses to do I.V. under the supervision of your own G.P. which would be much cheaper saying she did not have time to consult with them. My old LLMD did that before she quit her practice.
So, I have had personal experience with Dr. R and do not have good impression, while Scott, you have no personal experience with her.
For some she has been a good doctor. I know most of Byron's family was treated there and Byron is doing better. However, he was there at least 9 months and I can't even imagine the price tag. He is doing oral antibiotics and working part time according to his dad on the Healing Well Forum.
I did ask her about Dr. F's mystery bug, since she was calling it and treating it as bartonella and she did admit it was not bartonella, but since he had not made it public yet, she would continue to treat it as bartonella--which I find unethical.
We all have doctors and LLMD's that we like and dislike, so those that have had good experiences with Dr. R should say so, since I am only one person.
I would use the tinycurl, but honestly I do not know how--so sorry.
Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Hiker,
Would you please shorten your original link by using the Tiny URL?
My computer will not allow reading of your last post. This is the tinyurl for that:
EDITED: WHOOPS; i missed this; you did the work for hiker!!
all she has to do is copy it to her 1st post and DELETE THE LONG ONE! wow, that was some short cut you created keebler!! many thanks my friend... xox
****************
i just sent hiker DETAILED step by step instructions to help her correct the problem; so be patient and wait for her to try doing this for 1st time.
she forgot just as we all do on things; this darn lyme has taken so much of our cognitive skills .... it's the pits.
but hiker is trying; she sent me a pm, and i just finished replying to her....
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Something is not right here. Guys we all know
thyroid issues goes with Lyme. As well as all the
other hormones. How in the world would so many
tests not reveal Graves to a hormone trained MD?
Or was it simply the turning on of the hormones
flooded her system from the treatment? Facts are
hormones are very hard to control in disease
states. But I believe there is more to this
article than meets the eyes here. Hyperthyroid
treatment is control. If unable, surgery or
radiate. Either costs big bucks. I personally
would chose surgery because of the greater likely
hood of cancer in hyper. Either way it does not
tell you why you have the problem in the first place. No one can.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Lyme is a multisystem disease which can produce a lot of conditions you could give a bunch of different names. Add in coinfections and late treatment and you have a real big mess. For instance, my list would be pretty long.
I am very reluctant to judge a doctor by what is written in things like this. As we know, it is likely to be wrong. And patients who complain about a doctor-----we have only one side of the story. It surprises me that the person who started this thread is saying the doctor apparently diagnosed this patient with lyme when she only had hyperthyroidism. Really? We don't know that, and the thyroid is one of the frequent targets of lyme disease.
Candace Anthony, the person who is suing this doctor, says almost none of the patients treated there had lyme disease. WHAT!!! How could this patient know that about other patients? This is a totally stupid thing to say. Has she seen the test results, the symptoms they have. Why would anyone believe a thing she says? She has no medical license, has not seen the patients, has no information, but can diagnose them?????
There have also been situations where the IDSA opposition types have gone looking for gullible or greedy patients to attack lyme doctors. Look at what has happened to Dr. Jones and to another Dr. J. One of the people who sued the latter should have been put in jail for the suspicious death of his wife. Another one wanted money for plastic surgery to "fix" her Bells Palsy, which she said was not lyme caused. Do you really want to believe people like this?
Those who are getting any lyme treatment now need to be careful about believing everything negative they read about a lyme doc. Some, who ought to know better, seem to fall for every false charge that is made. If you do this, what do you expect from the general public, which doesn't have any counterbalancing information?
One of these days there will be no lyme docs, which is exactly what the last 15 years has been about. One lyme book by a former Yale doctor even said this: we are shutting down doctors who don't practice the way the IDSA wants them to.
I don't personally believe in debating this case on a lyme forum. We don't have all the facts and have no reason to believe the truth is being told, since it hardly ever is about lyme treatment and doctors.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I believe the comments hiker has made about this doctor are a violation of the terms of use of lymenet. Please see sticky at the top from Lou B on this subject. I am going to ask him to review this thread.
People who don't like the approach of a doctor are free to go elsewhere. This happens all the time in other areas of medicine.
Lawsuits like this, in my opinion, are baseless and are get-rich-quick schemes. Ticks bite all kinds of people. Some of them are not honest.
Posts: 8430 | From Not available | Registered: Oct 2000
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Lou,
I did not intend for this to be a hot debate. I edited the topic to put in the state rather than the city. The lymenet rules "suggests" you not post details about visits with doctors. It does not say you cannot do so.
My point was a doctor was being sued. Someone who had never seen the doctor defended the doctor and I felt I needed to give my personal experience. I also stated that I was only one person and others may have positive experiences with that doctor.
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I see nothing wrong with Hiker53's comments. The user showed reality from their perspective. It's dangerous just to have everyone say, the LLMD treats Lyme so all their viewpoints/treatments are sound.
I have no experience from a patient viewpoint so I can't comment. I just think Dxing 21 different conditions and taking 40+ vials of blood (if true) is a bit out there!
Lou, aren't you Lou B?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Seems like they spell everything out pretty well on their website including the fact that they do extensive diagnostics at specialty labs that are not all covered by insurance.
The list of items in the article that are given as examples of diagnosis are most often conditions/symptoms that are associated with lyme disease. Insomnia, depression, fibromyalgia etc.. Tremors are a symptom not a diagnosis of a specific condition as are other things on the list.
I am not a patient of hers but I wish all Doctors spelled things out for patients to see as well as she does.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
HYPOthyroid often goes along with lyme, not hyper.
Think about WHY the body would slow down metabolism.
Hiker...I get it and agree.
Modern version of the Hippocratic Oath:
"I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required,
***avoiding those twin traps of
overtreatment and therapeutic nihilism.***
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.
I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty.
Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth,
but a sick human being, whose illness may affect the person's family
and economic stability.
My responsibility includes these related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help."
Lou, I can't believe you said this (above):
"One of the people who sued the latter should have been put in jail for the suspicious death of his wife."
The action of botulinum (as well as the toxin from the Lyme spirochete) is to prevent, through its action as a proteolytic enzyme, the release of the neurotransmitter acetylcholine."
A lyme literate MD, I'm SURE, knows the above about Bb.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I agree with Marnie.
They use it up -
and we need it for every cellular function we have.
God made a fine tuned machine as sweet as a harp.
And in Lyme it sounds like a sour fiddle.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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adamm
Unregistered
posted
$#!+ the poisoners are really going for it this month!
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
What minerals does Bb NOT want/need a lot of? K, Ca, Mg.
What minerals does it EXPORT/cause to be exported? K, Ca, Mg.
Primer:
There is a "reactivity" to the minerals...which one will react with acids FIRST to make hydrogen - to maintain our pH.
Li, K, Na, Ca, Mg...
Bb wants Na. It does NOT want Ca OR Mg (or K).
It would take a LOT of MgCl to displace NaCl and CaCl, but it CAN be done.
K...tricky..very dangerous. NORMALLY K is INTRACELLULAR, not Na.
NORMALLY Na is on the "outside" i.e., extracellular.
Bb triggers the INFLUX of Na and Ca. But then it exports Ca out.
Li...also very tricky, but can HELP.
Notice I said help, not cure.
There IS another mineral that might work...
It is used to COAT LEDs.
In a jam, we do use other minerals to help out if one is low.
Mn for Mg.
Pyridium.
Al for Mg (both burn very hot and with a white light - to "ignite" the other minerals = fireworks)
But Mg and ONLY Mg is attached to OUR ATP as Mg-ATP.
Adamm...we gain nothing by calling anyone names like "poisoners".
We each may have our own points of view and should be able to discuss them without name-calling.
Yes, we need Na except it is suppose to be OUTSIDE the cells and K is supposed to be INSIDE.
Bb is reversing this.
Abx. ALONE do NOT cure lyme.
NOTE, I said ALONE.
If you want to do abx., okay...but PLEASE note that the Romanian doctors found it took IV doses of abx. AND IV doses of Mg for several weeks to CURE lyme.
AND.
Mg is working on several "levels", but it is an anti-inflammatory.
It looks like we have to tame down inflammation AND hit Bb with abx, or Rife, or infra-red, or HBO.
WHILE pouring in the probiotics because all of the above are going to destroy the health of our bowels...destroying the "good guys" with the "bad".
Looks like doctors either: (1) overtreat or (2) do nothing/not enough
Did they not understand that promise in their oath i.e., "avoiding those twin traps of overtreatment and therapeutic nihilism" ?
If they really don't know what to do and don't admit it, do they then decide to do everything in the book or do nothing at all?
It appears most doctors prefer to do nothing at all (or very little) UNTIL one has an "accepted" DIFFERENT diagnosis like lupus, MS, ALS, "autoimmune", Alzheimer's, cancer...
THEN they will treat...Rxs, surgeries, etc.
"Wait and see" approach.
[ 05-29-2009, 11:30 AM: Message edited by: Marnie ]
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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