Wow....wondering if anyone else who has seen the Reno Naturopath has been billed for 3 minutes of time for her to just read something??? She charges $275 an hour so you would think that some minimal administrative functions below a certain level (like less than 5-10 minutes)is just part of doing business costs. Good grief, consumer be ware I guess, or do others who see her think this could be a mistake??? I hate to call about something so petty.
Posted by seekhelp (Member # 15067) on :
No experience with her, but in the Lyme world it doesn't surprise me a bit. Those in demand charge whatever they see fit. Well, this probably would happen w/any prominent medical professional, but usually insurance w/pay the bulk.
Posted by LittleLymie19 (Member # 15610) on :
I'm about to see her for the first time. I'd love to hear your feedback or experience or results with her...or anyone else's feedback for that matter.
Posted by eagle (Member # 19278) on :
Whoa, so did the ND actually bill you for 3 minutes of her time...or were you asking hypothetically?
If this ND does charge for 3 minute-increments, I'd suggest she go back to school and become an attorney instead!
Posted by CD57 (Member # 11749) on :
I was charged for the same things, ie; writing an email to my LLMD or reading a test result.
I took the charges to two other practitioners, alternative and traditional, and both were outraged, saying the hourly cost should be inclusive of these types of things.
I think she/her office should make this clear up front so people know what they are getting in to.
Posted by SForsgren (Member # 7686) on :
Her policies and fees are clearly stated up front. If someone has concerns, they should have already known all of this as part of the intake paperwork. I've found her to be well worth the price.
Her hourly cost is quite inexpensive relative to many other practitioners and in my experience she delivers far more than most.
Posted by Keebler (Member # 12673) on :
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How many times do you ask if someone has a minute to answer a question and then it really takes much more of their time?
Rent has to be covered, the power bill paid, employees paid, college loans repaid, continuing education fees, professional license fees and insurance and they also have their home costs, family support, etc.
They have spent tens of thousands (usually still in debt), going to school, college plus four more years (at least) for the ND degree. They have to pay the bills and can't afford to give away their time and - still - chances are they will spend extra time along the way (without being paid for all of that) to see to it that their patients succeed.
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[ 05-06-2009, 02:25 PM: Message edited by: Keebler ]
Posted by sparkle7 (Member # 10397) on :
I guess it's $4.58 or so a minute... What happened to the good ol' days when doctors used to make house calls?
Seems a bit petty but that's the way things are these days. I guess you have to ask yourself if it's worth it.
I've been my own doctor for some time now. It's not easy but it's free... There's really alot of great info here & on the internet. I try to research everything as much as I can on my own.
After 9 years of misdiagnosis - I'm pretty fed up with doctors.
Posted by Keebler (Member # 12673) on :
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I don't understand why so many here want to trash anyone who is making a living providing services for which they have paid dearly to learn. That doctor had to pay much more to gather the knowledge that will answer our 3 minute question.
I know many of us have little to no funds, many don't have doctors but it is simply not fair to trash any doctor just because they charge for their time. It makes us look like we expect them to give us money because that what it comes down to when we expect free services. If we treat them like the professionals they are, then they will be better positioned to work hard for us.
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[ 05-06-2009, 01:24 PM: Message edited by: Keebler ]
Posted by jam338 (Member # 14002) on :
Hi Eagle, no, sadly it was not a hypothetical. It was an actual invoice at $275 hr stating 3 minutes for reading.
I am just trying to ascertain from other patients whether this type billing process is typical in their own experience with this particular provider or if this is a mistake that I should inquire further into.
Based on responses, it appears to be typical. Perhaps it is a read the fine print issue. If so, I definitely missed it. It was not clear to me before, but is definitely clear to me no after this invoice.
Unquestionably, it is any provider's perogative to set their rates and establish their billing policies and practices. As a consumer of services I just want to understand so I can ensure that I budget accordingly.
Thank you to those who have responded to help improve my awareness and understanding, thank you. It will help me in making decisions going forward.
CD57 thanks so much for your honest post to let me know this was typical in your experience as a former patient. Others had initially warned me that costs with this provider were EXTREMELY expensive, at approximately $1,000 per visit. I guess I underestimated that would include services like "brief 3 minute reading functions".
Thanks for everyone's reply.
[ 05-06-2009, 09:06 PM: Message edited by: jam338 ]
Posted by jam338 (Member # 14002) on :
Sparkle, I totally understand, and hey you do a good job at being your own doctor! I am impressed! Want to be my doctor too? <wink>
On the housecalls, I wonder how many doctors ever make them any more? Guess that shows my age, but I remember as a kid that our town country doctor made housecall rounds throughout the county most days of the week and then had office hours (at his house) one afternoon a week! Those days are long gone.
Seriously though, how do lyme patients who become too sick to get to a doctor get medical services? I have often wondered if there are any assisted living facilities in the country who are lyme literate??? At some point in our lives we may need to know that. If any of us ever recover, that would would be a great business endeavor to consider and a valuable service to lyme patients. Once we go into assisted living and have to be under the care of "traditional medicine" .....then what??? I guess that is a different topic, but something to think about.
Posted by SForsgren (Member # 7686) on :
jam338, if you think that 3 minutes of charge is a significant issue, I personally would find a different doctor. You are not going to be in the right space energetically to benefit from the practitioner if you have concerns such as this. "Consumer beware" does not align with this practitioner being the right one for your journey in my opinion.
It is all made clear in the initial paperwork that the patients sign - I signed it.
Posted by Keebler (Member # 12673) on :
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Rather than taking a "consumer beware" attack stance directed at good people, I like to consider "what is fair."
Yes, it is hard for a patient to pay out of pocket for lyme literate doctors. And, yes, there should be real experts all over for us, covered by insurance, just as most other conditions are covered. But we have to be very careful to not carry the anger we feel about that to places it doesn't belong.
What if you were in the grocery store and bought a month's supply of food but, at the check out line, just after you paid, you see a stand of apples and you want to take a half dozen. Would you think the store should just give you a half dozen apples?
What if you just had your sink repaired but it also needed a new stopper? Should the the plumber just give that away?
Rather than feeling robbed, it may help to realize that some doctors have to implement a professional policy - across the board - so that time is alloted fairly and in standard measure, for everyone.
This is not a case, as seekhelp shouts, of "those in the lyme world charging whatever they want" (which I think is an inaccurate and unfair statement) because charges would be the same (or more) for other doctors - look at some of the charges across the board.
"Just reading something" you present is not always easy. Strict attention must be paid to each detail, the brain still must be fully engaged.
If feeling victimized over us having to self-pay for doctors and treatment (and, yes, that feeling is understandable) . . . well, if that spills over, it would be hard to be in the place where you could feel like it is a fair trade of knowledge, experience and counsel for your money. Will it be a fair trade, with respect for each party?
My experience with most NDs is that you will get more than your fair share. As a rule, they are very involved and giving of their energies and more engaged with patients than most regular MDs. But, it comes down to if you feel you should pay for services as outlined in the agreement.
If you don't think so, as Scott suggests, it may be better to find another lyme expert. Treating one's self is no bargain nor necessarily all that effective considering the time and energy out lay to always be studying - so I hope you don't decide to do that if you have access to a good LLMD or LL ND with a wealth of experience.
Good luck with your decision.
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[ 05-06-2009, 04:19 PM: Message edited by: Keebler ]
Posted by eagle (Member # 19278) on :
quote:Originally posted by SForsgren: Her policies and fees are clearly stated up front. If someone has concerns, they should have already known all of this as part of the intake paperwork. I've found her to be well worth the price.
Her hourly cost is quite inexpensive relative to many other practitioners and in my experience she delivers far more than most.
SForsgren- A few questions that might help Jam338: Are you still a patient of this naturopath? When did you start/stop seeing her?
Jam338 sounds like a relatively new patient, so I'm wondering if the office policies have changed or the new patient paperwork have become less clear? If you are still seeing this practioner, perhaps you could help Jam338 understand the fee structure or help her find it in the paperwork.
I know from personal experience that with the congitive problems many of us have, it can be a struggle to read and comprehend the multitude of new patient forms and other paperwork that seem to come with any practioner treating Lyme.
Jam338: Do you think perhaps your questions could be due to confusion and misunderstanding he practioner's policies? Hopefully you'll get your questions clarified soon.
Posted by sparkle7 (Member # 10397) on :
My regular doctor does not do this type of billing. He does not consider himself a LLMD but he's a good doctor & has been there to help me. He is in CT - so he understands about the Lyme situation.
He has offered me reduced rates since he knows I don't have insurance. He often spends 1 & 1/2 hours consulting with me & only bills me for 1 hour at about 1/2 of what he usually charges. He allows me to e-mail him with questions & doesn't bill me.
He also arranged for me to get the full Cowden protocol for free via the special program offered by Nutrimedix & his office mails me the box when it arrives.
He's a good guy. He may not be a world renowned LLMD but he's a good basic doctor who has some compassion.
I do most of my own research but I can call him for help or prescriptions if I think I need them. He was very open to me using the LightWorks & I also sent him info about the Bionic 880...
He also does phone consultations with me since I'm not near to CT. There are alternatives to this sort of nickel & dime stuff but you have to search it out.
It's the doctor's prerogative to charge like this but there's no guarantee that a particular doctor's experience & techniques will actually make a specific person well. It's always a risk...
If money is not an issue - it's not as big a deal. When you have about $30 left in the bank & you have to decide if you should spend it on food or supplements or the phone bill... it makes a difference.
It's not necessarily an issue of whether you agree with that sort of energy or not or whether the doctor deserves the money on an ethical basis because they went to med school. Sometimes it comes down to very basic things.
Sometimes, compassion can outweigh supply & demand. It's pretty rare these days, though.
(Thanks for the compliment, jam338.)
Posted by 4Seasons (Member # 14601) on :
My daughter is a current patient of hers and I am about to become one.
I was aware of her policies and how expensive she is before we started. I made a consicous decision not to let the money get in the way of my relationship with her.
It is sometimes hard, as she does charge for every minute of her time and her assistants time, lots for shipping & handling, etc. But bottom line for me is that I think she is helping my daughter so I just pay what she charges.
One thing that helps is ordering the supplements in her protocol from online sources that are cheaper like www.renewalenterprise.com . Not the plant stem cells, tho, can't find them anywhere else.
I did have a talk with her at the beginning regarding our financial situation. Have you talked to her about that?
I'd like to PM you, jam, but your box is full. Let me know how you are doing.
Posted by m0joey (Member # 13494) on :
I certainly see merit in both sides... but we shouldn't hold NDs to higher standards than most of the MDs that time and time again disappointed us just because they have that much more potential to get us better. The return on investment for ND school is essentially a crap shoot compared to MD (tuition is the same but you start with 40K the 1st year after graduation..compared to 90-100K for MD).
They signed up to be professional doctors, not activists.
With that said, Jam338, I do hope you get the best bang for your buck, whether it's with her or somebody else. The relationship we have with our doctors is almost as important as the actual care we receive when it comes to building confidence and hope towards recovery.
Posted by SForsgren (Member # 7686) on :
I am still a patient of hers. Have been for maybe 18 months and yes, I still see her.
The office policies have not changed. The paperwork is clear. It is 275 per hour and they do charge for charting time, prep time, etc.
Posted by jam338 (Member # 14002) on :
Thanks everyone for your help.
The hourly rate is $275 hr whether it is an office appt, phone consult, research time, office vist prep time, post chart work, reading, whatever. I think any logical person would reasonably wonder how billing is calculated where $275 hr easily reaches a typical $1,000 per visit cost, sometimes more. I have yet to hear of any patient who paid less than a $1,000 per visit.
To add some content and clarity for those who are not patients of this provider, this provider (like many others I am sure) does not take insurance. She requires the patient to have a chargeable credit card on file. As various services happen throughout the month (direct or administrative)the office direct charges your credit card. This of course requires a huge level of trust and integrity between patient and doctor.
Given the constraints of my situation of being on disability, and prior to my first appt, I tried to responsibly ascertain through staff an understanding of how billable hours are calculated.
Like many of you, I have lyme brain problems with reading and sought clarification by phone with staff to ensure I understand the process. So, the followin understanding is based on what I was told by staff.
I was told by staff that most doctors (including her)use 15 minute billable hours process. I shared concerns about my financial situation and disability. I was reassured that their policy does not mean being charged every single minute of doing anything. I was further told that anything less than 5-10 minutes would not typically be considered a billable service. That seemed reasonable to me. I instructed in writing that they should not charge my credit card without advising me of the incurred charges so I could budget my financial resources accordingly. I was reassured they understood that my credit card would never be charged without a phone call to me advise about charges. Apart from the mentioned 3 min reading charge and other charges, the total of this bill is near $100. I have not had a phone consult in a couple of months and no advance call about this charge. So this totally threw me.
I didn't go into all of this in the initial post question because I was still trying to sort out in my mind exactly what happened here. It started with a simple question if others experienced 3 minute reading charges.
I don't think any of us have a lack of regard or respect for any doctor's time nor do we expect services for free.
How sad that some rather insensitive assumptions have been incorrectly made and commented on by others, especially people who know the ravages of this disease are physical, cognitive, and financial.
As patients (whether with this doctor or any other) we have a right and responsibility to know how billing is calculated, especially when an open credit card is being easily accessed.
How else would we be able to responsibly estimate and budget our financial resources to ensure we are able to pay the bill when it arrives at the end of the month?
The real underlying concern with this issue is far beyond the charge of 3 minutes, or the specific stated words of the policy. It is HOW the policy is applied. Thank you to those of you who clearly grasp the bigger issue.
For me, the issue is (whether with this doctor or any other):
1. Patients need to ensure they have a correct understanding of the policy on how billable hours are calculated and applied.
2. Patients need to be able to trust that what they are told is the process is what is actually being applied, especially when an open credit card is easily accessible.
This is just plain common sense personal responsibility of one's financial arrangements whether it is with a doctor or a plumber.
LittleLymie19, sorry, I totally missed your question about wanting to hear feedback about actual quality of service from this provider. This has gotten a little long so I will respond to your question separately.
4Seasons hi! I have been wondering how you and daughter are doing!! I didn't know my mailbox is full. I will go clear it right now. Looking forward to getting caught up with you! Thanks for the website for protocol products, I have been trying to find other online resources for ordering since everything through her is so expensive.
[ 05-07-2009, 08:17 AM: Message edited by: jam338 ]
Posted by m0joey (Member # 13494) on :
Jam338,
I was unaware you were told one thing and given another. Changes the entire complexity of this topic, and is simply miscommunication on the staff's part. I think we all got sidetracked a bit.
Hope you get this cleared up asap so that your energy can be put to better use.
best, joey
Posted by Hoosiers51 (Member # 15759) on :
I feel like most doctors (though not all), whether MD or ND, will charge you if you fax them something, and ask them to take a look at it.
But I do not get the impression most MD's or ND's will charge you for the reading of labs that are sent directly to their office from the lab. I have never heard of a separate fee for that.
It "makes sense" in a way, but since I have never heard of anyone else charging for that, it does seem odd because it is out of the realm of what normally happens, so I do not blame you for being upset.
Especially if a staff member told you that they would not charge for something less than 5 minutes.
If it is $275 per hour, that is reasonable, but with all the charges you mentioned, I'm not sure how things really add up. It is hard to imagine paying over $1000 for a first visit, but I am a frugal person. I would hope the $1000 would include about 3 1/2 to 4 hours of work by the ND him/herself.
At a certain point you would wonder if some of the things they are charging you for could be done by an assistant for a lesser fee.
For example, the ND should be paid more for his/her services than an assistant who did not go through as much schooling/training.
I wonder if the reading of some things like normal or more basic lab results could be done by someone else? Is that done by someone else? If so, you shouldn't be paying $250 an hour for it, in my opinion.
If the quality of what you are getting is worth it to you, of course, most of us would pay what we had to pay.
Hang in there! Hope you get it all figured out.
Posted by jam338 (Member # 14002) on :
hi Joey, I just went to clear out my mailbox for 4Seasons and found a PM from you in March that I never read or replied to, sorry. Not intentional. My private email is still the same as before so I don't know what happened with why your email wouldn't come through. I'll PM you.
As for this issue, my initial question has been answered. It was important for me to ask others about their own personal experience.
Posted by jam338 (Member # 14002) on :
Littlelymie19,
Getting back to your question. You asked me about my experience with this practioner. I am a new patient. I have only seen her once and had only two phone consults, but will give you my limited, but honest experience feedback.
Sorry, this is long. This is only my experience which I can tell you seems to vastly differ from others. Feel free to totally disregard my experience as just a bizarre string of fluke things. Fluke things can happen with any practitioner.
When I was deciding whether I should pursue an evaluation with this practitioner, costs were (are) a huge consideration for me. I am on disability.
I was told by others that the costs of visits are extremely expensive, at a minimum of $1,000 per visit (not just 1st appt, EVERY visit). There are are posts on other threads about this cost factor. At least one person has posted they do not think this practitioner is expensive. So, its important to be aware of range of perceptions aabout what is or is not considered to be eexpensive as well as about value of services.
I can not afford long term treatment at those rates. However, I have been bedridden for 4 years and lost independent living capability, and can not do anything. So, I am circling the drain and felt I had to find a way to manage an evaluation. Especially after my LLMD told me he felt my condition is too fragile and he did not feel comfortable treating me unless I agreed to see her or Dr.Klinghardt.
There is a thread or two elsewhere on this board about experiences of others with this practitioner. I really wanted (needed) objective evaluations. I felt that a couple of people, particularly CD57) was very forthcoming which I greatly appreciated the honesty. Following CD57's example of honesty, I want to pay it forward by being equally as honest with you about my own limited experience thusfar.
I have consistently observed that some regular members have developed long term relationships with various practitioners who are put on a coveted pedestal. Understandably, if a practitioner has helped someone, they are going to feel that person is a God or a *rockstar* as this practitioner is sometimes described.
However, I am in contact privately with 4 other patients/family members of this practitioner. Two feel they have been helped, though only one person has had substantial progress after treatment for over two years, which for lyme treatment is a very good result. The other 2 have been seeing her for several months, minimal results, several thousand dollars into treatment. All of the people I am in contact seem to be like me, extremely ill, and trying to remain hopeful. They expressed reservations and concerns about cost vs benefit.
Some of the things said to me give pause for concern, especially in context of my own limited experience.
First, while she has not yet said the following to me, other patients perceive that she has promised them that ALL her patients get well if they do exactly what she tells them to. Of course, these are extremely sick people like me who are bedridden. All want (need) to desperately believe we will get well. However, I have not heard of any other doctor who promises very ill patients they will get well.
Most of the people I am in contact with are mothers of very sick children. What mother will NOT do anything for her sick child? They desperately need to believe what they are being told is true. I pray that it is.
These wonderful valient mothers fighting for their children's lives are going deeply into debt, pulling out and spending their retirements with this practitioner. We are talking many many thousands of dollars being spent. I believe that most have ensured the practitioner is aware of their financial situation. I have certainly made her aware of mine, and I make every effort to manage cost containment as much as possible.
Regarding my own situation, at my first appt my hormones were so out of balance that my husband had to stand next to me rotating ice bags and a blanket to respond to my severely swinging body temperature.
For several months I had been having raging drenching sweats, changing clothes about 3 times a night and 2-3 times a day. I would go from drenching sweats one minute to freezing needing a blanket the next. Each attack severely impacted my cognition and my ability to even carry on a conversation.
Prior to the appt, I had submitted all my prior lab tests and paid for her time review pre appt labs, plus a pre appt phone consultation that I was told was necessary to discuss the labs so that would not be necessary at the office appt.
However, when the phone consult occurred she advised me she had not had time to review my labs yet so instead of going over the labs, the phone consult was spent asking me the same questions on my new patient intake forms and reading back my answers to me. She assured me she would review the labs prior to my first appt. I wondered why she didn't have saff didn't call and cancel the appt since the purpose was to review and discuss the labs.
At the first appt (though barely functioning), I asked specific questions about my prior hormone testing results. She seemed unaware of the testing results.
She asked what top 3 things were my worst symptoms. I told her my primary reason in being there was needing help with hormone balancing and mold testing/evaluation. The hormone issue was obvious as my husband kept rotating ice bags and a blanket on me while I lay on the exam table.
She performed ART testing and never mentioned hormone problems as one of her findings. That felt strange, especially when during the pre-visit phone consult I had emphasized about the hormone problem, related tests faxed, etc. The website says hormone balancing is one of her specialty areas.
Her response was well hormone problems just goes with having babesia, but could also, in part, be caused by mold. My husband and I were very concerned that she didn't sound like the hormone problem was a priority. It felt like being in a house that is on fire, but the first responders are talking with you about the possible sources of the fire as opposed to first getting the the flames under control first.
It further baffled us as to why she instructed that I stop supplements that had clearly been lessening the intensity of some of my symptoms. However, I really wanted to try and do what she said since some here had declared her to all knowing and do exactly what she says do. I wanted to give it a fair chance.
That was several months ago. After stopping the supplements, the hormone problem continued to substantially worsen and reached the point of being intolerable. I started having suicidal thoughts. My husband was terrified. I knew I had to do something and could wait no longer for whatever master process she ultimately intended for later to unfold.
I contacted her office, and they arranged a phone consult. I told her we had to do something as I could no longer take it. We needed to restart supplements, test, or do something to find answers regarding the hormone problem. She stated she had a master testing plan in progress. I kept reminding her that I already have testing results in her file showing deficiencies and couldn't we at least start there and begin interim treatment to stop the worst of my symptoms. Her reply was well those labs aren't current now, so we really need to get these tests done. Well no, not now the tests aren't current, but they were current several months ago when I first submitted them.
She wants about 40 labs run, of which hormones are a part. She needed to coordinate the labs with my LLMD so that it could be processed through him to be covered by my insurance.
A few weeks later the lab order was sent to me with incomplete testing panel information. It took several weeks more to get a corrected lab.
Yes, I was charged a second time for the lab correction coordination time, even though it was their mistake. A similar process happened with my first protocol. It was given to me with insufficient written instructions. It said how many pills to take but failed to state the milligrams. I had to contact them to clarify about the milligrams. I was charged again for the clarification.
I don't expect perfection. I don't expect to get free services or not be charged. I do reasonably expect to not be charged twice for something because of their mistakes or oversights.
However, the more immediate hormone crisis intervention was needed to get my symptoms more managable. We felt that we were going nowhere, so, my husband took me to a local naturopath who agreed to specifically lab test my hormones.
After looking at all my labs, including some she had already run, he said he was stunned that she had taken me off what he felt were some important supplements in my situation.
He said the lab reports showed consistency with mitochondria disease/disorder, and that some of the supplements she stopped were to specifically support the deficiencies shown in my energy making cycle.
He said if I didn't restart the supplements she had stopped that I would get worse. I could not imagine getting worse, so in desperation I restarted the supplements he outlined for me. He started them at 3-4X normal doseage because the tests showed that I just that low.
Since starting the bio-identical hormones and the supplements, gradually my hormones have improved, thank God. It is still not where things are balanced, but I am no longer changing clothes 4-6 times a day or thinking about suicide options.
I still feel the hot flashes, but no longer actually break out into the sweats and have to change clothes. My husband is no longer having to change the sheets every 2 nights, and no longer having to worry what I might do to myself in desperation for relief.
My body temperature is slowly regulating. I still have problems with it but the intensity of the swings with it is less. I don't know what kind of shape I would be in now if I had not gone to the other doctor to get the lab testing done and start supplementing started.
There is a lot I don't understand. In fact, most of it. I don't see how she could have underestimated the severity of the hormone problem. Hormones are a stated area of specialty.
I really don't understand why she stopped the oral nutritional supplementing, then did lab testing for nutritional deficiencies, which of course showed nutritional deficiencies (that is why I was on supplements)....then says what I need is compounded IV supplements, a service her colleague provides.
I have no doubt that I have nutritional deficiencies caused by a leaky gut. I had hoped for help with dietary recommendations to help fix the leaky gut. I need to fix the hole in the bottom of the boat. But, that is a whole separate issue.
I don't doubt that coumpounded IV supplements could help me. I have lab documented deficiencies. I need all the help I can get.
The really strange part that confuses me is the intended compound IV supplements will include some of the same supplements that were stopped.
Also confusing to me is that I was also told that her testing showed I had a problem with sulfates. I was given a sulfalte avoidance dietary guide, told to buy expensive test strips to test urine. Ordered the strips, tested several times (prior to starting the diet to get an avg pre-diet baseline); all tests were fine within normal range. I have no idea why they thought I had a sulfate problem. Maybe I did that one day. Again, maybe just a fluke thing.
I think you can maybe see why I am a bit confused.
It seems like to me that she has her planned process. As long as that works, perhaps things go better. In my case, I needed more "situational response" to the hormone crisis. Instead, I had to seek intervention assistance with that through another provider.
In all fairness, it should be noted that it seems that patients who were first referred to this practioner some time ago have posted they are happy with services.
Since then, many new patients have been referred to this practitioner, and it seems that her office may be overwhelmed with new patients. Maybe they are not able to manage as efficiently as before? Maybe that is a factor in the difference in various experiences?
I don't really know, I know only what has happened in my own situation and what I have been told about with others.
Esoterix mold testing costs; I was told the test would be about $250. The bill came in directly from the lab, $600. My husband is now having the same mold lab test done through the lab but through another doctor's office for $120. I have no idea why the costs are different.
All that said, the Esoterix mold test has confirmed the suspected mold problem. I am relieved to finally start having some answers after several months.
So, I just don't know. These are just some of the things in my experiences with this practitioner over the last several months.
LittleLymie19, I hope that my experience is an isolated fluke thing. It happens. I am still in mid-stream with testing so I don't think I am yet ready to make a long term decision. I am in the middle of a crisis about my house. Long term decisions should never be made in the middle of a crisis, when possible to avoid.
Quite frankly, if I was getting good results, I agree that most of this would likely matter. Most of us just want to get well, and as long as we are making progress towards that goal, much else is absorbed or just let go.
In my case I became much worse requiring that I see another provider to help get crisis symptoms under control.
Maybe I keep encountering a bizarre string of fluke problems. There is no doubt that I am very sick, my body is not responding to treatments, which is why I was referred to her in the first place.
Even after all this I am still trying to be objective, fair, and give it a fair amount of time to evaluate. My husband feels I am not accepting the obvious. Maybe he is right.
I am very desperately ill and close to giving up. This disease has wrecked my life, my family, my career, and now mold is wrecking my home. I can't take much more.
I really need and want for this practitioner to be all that she and others say she is. I pray that she will be for all who see her. I hope I have had only a rocky beginning. Maybe I am just desperately naive. I want to become one of the ones who can say she helped me. Only time will tell.
[ 05-07-2009, 01:18 PM: Message edited by: jam338 ]
Posted by pryorka (Member # 13649) on :
Woah I've heard of this lady too. Some people are trying to justify her charging these outrageous prices, but lets run through the math here... $1000 per appointment.. subtract her office lease, the $10/hr she probably pays her secretary, maybe she has a nurse at $25/hr and she's making right at $2 million a year. Cha-ching. Knowing good stuff and helping people is one thing, greed is another.
Posted by seekhelp (Member # 15067) on :
$2 million a year? WOW. Not bad.
Posted by Keebler (Member # 12673) on :
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The speculation here is toxic. How did $275 an hour turn into $1000 an hour or $2 mil a year?
Remember that when patients are billed for services or products beyond the doctor, the doctor also has to pay for those to be performed or procured.
I find I've had to ask myself at times if I had anger over having to pay out of pocket or resentment for others' success. Yes, on both counts, sometimes, and that is understandable as who wants to be in this land of lyme, anyway. The fact that I can't afford to see a doctor, though, does not mean they don't have a right to set reasonable fees. It's not always fair to judge where the money goes and if we looked to the MD world, the fees are often many times higher.
Please, be fair and remember that speculation can create a very toxic environment. Lashing out at those who have studied hard to help us is not helping us.
Maybe all the tests or supplements aren't necessary. I've been to some NDs who understood that I was there just to get the information or that I could only go so far with this or that. And they've generally worked with me within that framework.
It is possible to go bare bones but, geez, it sure takes a ton of personal research (and much longer) and that really wears me out having to figure this out all on my own. So, maybe you could just go for consults now and then.
Or you might ask around again and find another LL ND whose system is more in line with what you seek.
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[ 05-07-2009, 06:22 PM: Message edited by: Keebler ]
Posted by seekhelp (Member # 15067) on :
Keebler, who wrote $1,000 per hour? I read $275 per hour - AVERAGE cost of first visit $1,000+. There obviously is time being charged for whatever reasons, or testing, or whatever to total $1,000+.
I find this thread helpful and don't see insults. I really think the attitude LLMDs or LL specialists are untouchable and shouldn't be questioned ever to be wrong. There is a happy medium.
Somewhere the words compassion and empathy should come into play, not just education. Making a living is top priority to physicians, medical professionals and well ALL of us. Just because they know Lyme shouldn't be a get out of jail free pass to never give sufferers a break.
The question ALWAYS comes up here: Where would we be w/o our LLMDs? Everyone has a different answer here depending on their outcomes.
Another issue is there are obvious economic differences between patients here. Some seem to be able to try every possible treatment, get consults from every single person on every single aspect of this disease, try every possibility even when feeling pretty well just because it may inch them closer to perfect eternal health, etc. Others must pick and choose wisely as this dollar is their last. While some say, it's worth the $$$$, maybe not all. This reason alone is why this productive, constructive review of a provider is essential. One can them roll the dice based on their situation.
Posted by SForsgren (Member # 7686) on :
Often times, she will order tests, give the patients kits, and patients prepay for those tests. So that could be part of how your 275 became something more than 275. Or it may have included supplements or other products.
It was unique to me at first as well to prepay for test kits vs. at time of sending to the labs, but I think the rationale was to get patients a better price. Not sure on that point though.
If you don't know this doctor, don't see her, have never met her, and know nothing about her practice, making "greed" allegations is entirely inappropriate.
I've seen people start with this doctor in wheelchairs that are now walking, running, living life, etc. That's enough said.
Posted by jam338 (Member # 14002) on :
Hi Littlelymie19, you are most welcome. I truly hope you have a great visit and are given hope and encouragement. In spite of it all, I am trying to cling to hope and encouragement.
Some days I am ready to give up and other days I am determined to stay with it and find answers. I am sure most people understand that and have felt similar at times.
It would help if I had more positive results. Maybe things will turn the corner soon. It is hard to stay engaged with a process where I have a long list of questionables. I will look forward to your PM later and happy to exchange personal emails with you.
The road to recovery is truly patients construcively helping patients; not patients attacking other patients for being confused or having differing opinions. We are all trying to reach the same objective; to get well and recover our lives.
Posted by CD57 (Member # 11749) on :
Well JAM, I gotta say....you are definitely not exhibiting evidence of cognitive deficits! Your writing is amazing. I applaud you.
I have to say a couple of things. When I first became a patient of this ND I asked for patient testimonials. They had none. Not suspicious in and of itself, but still seemed odd considering that this ND has a reputation for getting people back from the brink.
Second, I also just got the Esoterix mold kit test panel through our other LLMD, Jam, and it was $120. So not sure why you were charged 4x that amount the first time. ???
Finally, Scott, we all know that you are a fan and that you credit her for some (all?) of your wellness. That is fantastic. But I disliked your advice to JAM about her not being energetically in a place to get better if she is questioning her practitioner. That is for her to decide.
Posted by SForsgren (Member # 7686) on :
If one does not have confidence in their practitioner or has concerns about their relationship with their practitioner, it is my opinion that they should find a practitioner that they better resonate with.
Or discuss and work through it with the practitioner but if one has a "consumer beware" approach towards the doctor, I truly feel you will get little out of that arrangement.
Posted by lymeberry (Member # 20102) on :
Scott sometimes I think it would be helpful to others if you would try putting yourself in their shoes for a bit. You can get huffy which does not help you or other members of this board. It is wonderful that you still can work and are well paid but can you imagine what it would be like to not have a good income and be trying to treat or perhaps have zero income for years and be trying to treat? Nothing is totally black and white in the world of Lyme and finding a perfect practitioner that one resonates with at all times is no easy task. I have yet to find that person. You seem able to see many different practitioners. That is wonderful and I am truly happy for you. We are not all as fortunate as you are nor as healthy and wealthy. I wish we were.
JAM is a wonderful person with questions. It hurts me to read the replies you post to her.
Posted by sparkle7 (Member # 10397) on :
I've been to so called "famous" doctors. Sometimes their fame may make it difficult to get a quality experience. They end up with too many patients & their rates go up.
They don't have the time it takes to give an accurate assessment or thoughtful consideration in some cases - since they have too many patients.
If this was your personal experience of this doctor - it's valid. Don't doubt that there is something wrong with you or your perception.
Some doctors work for people & some don't. I have decided that I don't want to go to "famous" doctors because of my prior experience. I'd rather do my own research & see someone who can help me when I need it.
I have been ill for 13 years & had very bad advice from most of the doctors I've seen.... so, I a bit suspect in regards to finding someone who can really help. I figured I'd have to take matters into my own hands if I was ever going to get well.
I think after all of these years - I'm starting to unravel what are my main issues. For 9 of the 13 years I was ill, I thought I had Fibromyalgia. So, I was researching the wrong thing. Hopefully, I'm on the right track now.
Some people need an authority figure to give them confidence that what they are doing is going to make them well. I'm not that kind of person.
You have to do what will make you feel comfortable. One person's meat is another's poison. Your experience is valid. I know how it is to lose everything due to this illness. I've been there...
In my opinion - it's not necessary to pay for overpriced medical help whether it's from a Natropath or regular mainstream physician. Medical care is a human right not a privilege.
It's not your fault that this doctor didn't help you. Seems that you need to look elsewhere.
Posted by Looking (Member # 13600) on :
Hi Scott, thanks for sharing your experience with us and I appreciate your forthright comments and you certainly have a right to state your opinon. I don't know why anyone would say you are huffy, I don't find your comments that way at all, but some may take things more personally or are more sensitive than others.
I think those of the male persuasion are generally less wordy and more matter of fact and may not sound as emotionally supportive. (not meaning they don't want to be)
I do agree that we should choose doctors we are comfortable with and if anything bothers us about a doctor it can impair our recovery so, in that case, I would try to find another doctor if I could. We don't need anything niggling at us when we are putting our health in someone elses care.
I appreciate everyone's point of view and try not to find fault if they don't word things the way I would like. Unless it is totally unkind, of course.
Treating this disease long term is way too expensive for most of us and this is very frustrating.
Jam, don't give up and I don't blame you for being confused about all this. I hope you get the help you need at a cost you can afford as we all would like, but this is a difficult thing to find for everyone of us.
Posted by jam338 (Member # 14002) on :
CD57, thanks, over the last few months I have been trying to figure out all the patterns of various things that has been happening in my situation. It hasn't been easy.
After my supplements were stopped I went through a much worse cognitive period where things were so bad that I couldn't sort anything out.
It takes me a long time to write things as it requires so many rest breaks. That is why why I am not able to participate much on here. However, I wanted to reply to Littlelymie19's question asking for feedback.
It is interesting that they told you they don't have any patient testimonials. That is a very good question to ask. There is at least one mother who has told me she feels this practioner has helped her child which is a blessing. I would think they would be able to have at least a few patients who would be willing to provide testimonials.
CD57, I am not sure why my Esoterix lab tests through this practitioner was 4x what you paid through another doctor. I had no idea that lab testing costs vary depending on the doctor. When I asked one of the labs (not Esoterix/LabCorp) about this in relation to other lab tests with this practitioner they said labs contract with different practitioners who are allowed then to set and charge their own lab rates. I haven't yet talked with Esoterix/LabCorp to ask why this vast difference exists with this lab.
Prior to this, I assumed lab costs were the same no matter who the doctor is. Not so. I don't know how patients would otherwise learn about things like this except for information shared in patient forums such as this.
No practitioner has all the answers for every patient. If it worked that way we would all be going to the same doctor.
It is a challenge for each of us to search and connect with a practitioner that we feel has a good handle on the specifics of our situation. And, every doctor is going to occassionally miss things. In my case it has been quite a few things, and some very important.
CD57, I am really glad that you are getting the Esoterix test done. If mold is a factor it might be interfering with your lyme treatment. If so, you will have another piece to the puzzle in your illness and why you have only been able to get so far in treatment!
I also have some new information for about how to do more affordable mold testing in your living or work environment.
My husband and I just got of the phone with a doctor in Florida. She is the author of a book on mold sickness. She is not a lyme doctor. She is a family practice doctor with a special interest in environmental illness.
The phone consult was scheduled through her website for an hour ($100). She talked to us for about an hour and half. The two areas she focused on was guiding us on mold testing our home and providing guidance considerations for me in treating mold sickness. She has a really good book, but most of the information is accessible free and updated on her website. She recovered herself from long term mold sickness and she had some great suggestions. I look forward to learning more from her.
Anyway, she told us about a mini instant test (from a lab) to test a suspect area in your home or work for mold. It takes about 10 minutes, costs about $15.
It functions basically like a instant pregnancy test. If the indicator turns purple, it means mold. If it isn't mold, it remains clear and you know there is nothing to worry about. If it turned purple, then you will want to further test to determine the species of mold to determine if it is dangerous mold. To do that part, you use a testing tape that I think she said comes with the instant test kit, lift a sample from the suspect area, mail it to the lab for analysis, $30. The lab sends you an mold analysis stating what types of mold were in the sample.
The limitations of course are that you are only testing a limited suspect area, and not the actual air you breathe.
The good news is it is a relatively inexpensive way to rule in or rule out a suspect area for mold.
Evaluating mold is a slippery slope in a very unregulated industry. For $100 anyone can take an online course and get a certificate saying they are a mold inspector of some sort. The key is finding ones with certifications from credible national organizations, and those of course are costly.
I was impressed that this medical doctor, Mary Beth Short-Ray, D.O., has so much compassion to help other people and makes her information on mold freely available online and has affordable services. She has a list of mold sickness sympoms on her website at http://www.toxic-black-mold-syndrome.com/black-mold-blog.html. Basically, the symptoms the same as lyme disease. How scary is that? I wonder how many people with clinical diagnosis of lyme disease might have mold sickness? It is a real risk issue in high humidity areas as some species of mold thrive in humidity above 60%, a factor very prevalent on the east coast.
What I learned in my phone consultation with her is she confirmed I have some mold symptoms that distinguish themself from lyme symptoms.
Now, I am more sure that I am on the right track about the mold problem, but will do further lab testing confirmation to isolate the source of the problem.
She also retails supplements she recommends on her website, but encouraged me to please google and shop around for the most affordable prices and to please let her know if I found things priced less. An hour phone consultation for $100. That seems unheard of to me for any doctor. It is my part of the country for sure. Unfortunately, she does not treat lyme disease. However, I have been bless with a good LLMD for that.
Posted by CD57 (Member # 11749) on :
Way to go! This is VERY great sleuthing, JAM. You've helped us all out. Now I know you are about to get that break that you need as well. How did she say that she treated for mold sickness?
Posted by seekhelp (Member # 15067) on :
Jam, diagnostic lab tests vary GREATLY by provider. I did a lot of research on this. Basically labs contract with LLMDs or non-insurance docs and have different price points. The labs can be a profit center for the docs.
At the end, it's up to us to decide what's acceptable from a total cost perspective. I like full disclosure. The prices are so sketchy that for some labs there is no 'real cost.' Igenix is the oddball situation where the patient is clear on the cost.
Other labs like Metagenix play pricing schemes and outright refused to disclose it to me. I got irriatated.
Posted by jam338 (Member # 14002) on :
CD57, yes she went over several recommendations on how to treat it. Quite a bit on her website I think, but I need to re-review that. I recorded the phone consult (like at GMA) and need to download it onto a disk so I can make better notes. Will share more specifics when I have done that. I think I will learn more from her in followups. There was a huge amount of ground that was covered today about house testing and my health situation and personal body testing for mold and its impact.
Posted by CD57 (Member # 11749) on :
I did some initial reading and learned some new things. Toxic black mold can be stachybotrys certainly, but also some other species.
Posted by R62 (Member # 18531) on :
Great info, jam.. thank you so much for sharing.
The doctor lists modifilin and infrared saunas for removing mold toxins even for thos eof us with the troubled genotype.
(I'm sorry for all you've had to go through.)
Posted by R62 (Member # 18531) on :
Hijacking the thread a tinge.. which test specifically is that from Esoterix? My doctor will order for me.. thank fully.
Posted by heiwalove (Member # 6467) on :
jam, i think your questions and concerns are completely valid, as spending 1000K on a single practitioner is no small task for most of us. lyme is a financially devastating disease and many lyme sufferers simply do not have the funds to try every treatment or pay to see top-notch practitioners monthly.
in my opinion her fees sound rather outrageous and it is startling that she charges for every tiny second of time spent on a patient's case. but perhaps that stems from my own personal experience thus far -- my current practitioner is an LLRN who charges a set hourly fee ($150), often gives discounts, and answers phone calls and emails free of charge. my former LLMD never charged for charting time; the fees were explicit: appointment, tests, supplements if i chose to buy them from his office. he, too, returned phone calls and discussed test results via phone for free. so, i totally understand your frustrations, jam, and given the fact that her starting protocol (or lack thereof) actually made your already dire condition *worse, it's no wonder you're questioning whether this particular practitioner is a good fit. when you're desperate and sick and on the brink, though, you want to believe someone is as godlike as they are famed, that they can get you well no matter what. it's a devastating situation in which lyme patients find ourselves entirely too often.
i wish you well, jam. i hope you find someone who can help you, whether or not you decide to stick with this ND.
Posted by CD57 (Member # 11749) on :
R2, you just have to get the Esoterix test kit...I think you or your doctor can call and order from them directly? Call them and see. Also, they are owned by Labcorp so if you called Labcorp they would probably know. My doc ordered the "43-245" mold panel, which I think includes a bunch of molds commonly found where I live.
Posted by lymeberry (Member # 20102) on :
I know from calling Diagnos-Techs that when a MD orders a test from that lab the MD makes 50% of what the patient is charged for the test. After paying for a medical appointment I don't know why the MD needs to make anymore money on ordering a test and I also wonder if that might influence some doctors to order from certain labs that they can make more money from ordering their tests rather than the best lab for the patient. I am talking about MDs in general not LLMDs.
Posted by eagle (Member # 19278) on :
quote:Originally posted by lymeberry: Scott sometimes I think it would be helpful to others if you would try putting yourself in their shoes for a bit. You can get huffy which does not help you or other members of this board. It is wonderful that you still can work and are well paid but can you imagine what it would be like to not have a good income and be trying to treat or perhaps have zero income for years and be trying to treat? Nothing is totally black and white in the world of Lyme and finding a perfect practitioner that one resonates with at all times is no easy task. I have yet to find that person. You seem able to see many different practitioners. That is wonderful and I am truly happy for you. We are not all as fortunate as you are nor as healthy and wealthy. I wish we were.
JAM is a wonderful person with questions. It hurts me to read the replies you post to her.
DITTO x 100!
However I don't assume people necessarily post on here to help others. I've seen too many people on various boards pushing their own agendas.
Posted by lymeberry (Member # 20102) on :
Scott can be very helpful and caring at times to many people. He does take the time to answer emails and help people.
Sometimes he does not realize that many of us don't have the same financial resources as he does and I also believe just like the book Cure Unknown speaks about not every Lyme patient is treated the same by every LLMD. Some get different treatment for different reasons.
I don't think Scott is pushing his own agenda I just think sometimes he does not take the time to put himself in other people's shoes before making comments.
Posted by 4Seasons (Member # 14601) on :
I honestly think that without this ND, my daughter would be dead now.
As it is, she is still gravely ill, but we are making slow progress and have been able to restart IV abx recently.
She has been very responsive to all my questions, easy to get in touch with in an emergency and her staff are great.
I feel like she has a good global picture of what is going on and our treatment has been clear. I understand what direction we are working towards.
She has often given me small discounts on her time, sent me opened products for free and directed me to less expensive sources than herself.
I know she is making lots of money, but I made a choice not to judge that. I was looking at some old invoices and I have been charged for 4 min. Since I feel she is helping my daughter I don't care, but if I didn't feel we were getting help after 6 months and lots of money I would probably feel differently.
I think she is very open minded to your concerns, jam, and would urge you to discuss them with her.
Posted by SForsgren (Member # 7686) on :
I agree that this is a matter to be discussed with the doctor directly. If you cannot resolve it to your satisfaction, then I would find another practitioner that you feel more comfortable with.
As for lab costs, there could be many things in play here. Were several or different tests ordered than what you had done in the past that you compared to?
It isn't a matter of putting myself in other people's shoes. I'm not suggesting that treating Lyme is not costly. There are some Lyme doctors charging 1200 dollars an hour! So 275 just doesn't seem at all outrageous to me. In fact, I don't know how a practitioner can keep a practice running at that rate. If you divide that out to the 7-10 minutes that most regular doctors spend with a patient on average, what doctor can you see for 39-45 dollars?
It is a matter of my experience with a doctor that was very clear at the beginning of her treatment on what the costs would be. A whole packet information was provided. The patient reads (I hope) and signs the papers that make this very clear.
Yes, the practice of charting time, research time, etc. being billed to the patient was new to me. I read the paperwork, I asked questions about this of the office before I started my appointments. I asked about additional costs. I made sure that I was clear on what the costs would be. I didn't want any surprises either.
If someone was not pleased with the costs which were all spelled out up front or could not budget for them, this was all known at the start of treatment.
I don't think it is fair to a very gifted practitioner to then started a "consumer beware" thread and talk about her "greed" (I realize that the greed comment didn't come from the original poster). Imagine trying to work with people as sick as many of us day in and day out. It is not an easy job.
Attempts to tear these doctors down such as what is being done in this thread is unwarranted in my opinion and quite unfair. What will we all have if they go away?
Posted by CD57 (Member # 11749) on :
You know what would be great, 4Seasons and Scott, since you both have experience/know people who have had incredible success with her--why not urge those people to create some patient testimonials? I am sure the ND would be totally open to that.
I think this would offer some level of confidence and comfort to those who are embarking on a long and likely costly treatment with her.
This doesn't address her charges, etc, but may go some distance in instilling confidence that this ND does indeed do good work and is worth it.
Scott, maybe you can be first!
Posted by Keebler (Member # 12673) on :
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This has the air of a trial or a witch hunt. We don't need documentation defending her. Her reputation is what it is. Many have said that her work is brilliant - read what they said.
To put this in a public forum that is accessible to the entire world is really very invasive. It's sort of like asking a guy when he quit beating his wife.
By setting up some sort of defense blog gives the sense that care was inadequate. I hear no calls of that whatsoever.
If anyone is thinking of seeing ANY LLMD, we have a wonderful system of private PMs for sharing helpful details. Area support groups, too, are a great place to discuss others' experiences and helpful suggestions.
I think, too, that there is a guideline here at Lyme Net to NOT discuss on the open forum specifics about a particular doctor's practice due to the misrepresentations that can evolve.
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Posted by R62 (Member # 18531) on :
Thank you for the information, CD.
I'm not sure how much it helps to know that other LLMDs charge more.
For some of us, having the money available to finance this expenditure is an extreme issue. Especially if there is loss of income and or multiple family members to treat.
This is also about SHOCK and the emotional effects of not only having a "cure unknown" with the "virulent, stealthy" bacterias but also having to deal emotionally with the loss of control and watching not only retirement, college reserves for kids, but daily finances as in having money left to buy food and pay rent continually slip through your fingers as if it is water and again, you have no control.. you are basically at the mercy of this doctor or that one to heal you and each one is a gamble and it is not fun. It can feel like a dangerous game you are unwillingly playing.
So if someone starts the thread in a way that puts a doctor on the spot, I think we can forgive that and we can stand with the person who may be in SHOCK (I go in and out of it) and the doctor at the same time.
Some of us talk about emotions and emotional blockages and how they effect healing or not healing.. thats something to think about. This illness and the political climate alone can create more TRAUMA. Even going to a caring doctor who charges more money than you can afford to pay can cause trauma.
When I have emotional herxes.. this is what puts me under the table every time. To top it off, yes the SHOCK and FEAR of having to put the money out with no sense of security that (1) I am being treated fairly (2) This doctor can be successful. (3) This doctor cares about me and will not let me fall through the cracks (4) I am getting what I pay for
Posted by R62 (Member # 18531) on :
This has no air of a witch hunt. It is unhealthy for people not to be able to process their thoughts and feelings. No one on this thread is out to get anyone. To call this a witchhunt, creates more drama than has to be here.
I also do not see attempts to tear this person down.
So if people had been more supportive to begin with and less defensive, we might not have gotten to witch hunt status so quickly.
Someone could have said.. PM me and lets talk.. lets see how I can help.
I also have no clue who this person is.
Posted by seekhelp (Member # 15067) on :
This is not a witch hunt at all. It's all being interpreted incorrectly. I hope Lymenet evolves someday to a place where you don't just need to shut your mouth and be a good Lymie. We all have issues and deserve respect and consideraion in what may be bothering us about treatment, symptoms, etc.
I really don't think medical providers spend a lot or any time worrying about how we can't pay bills, support our family, keep our residence, etc.
I'm not badmouthing or attacking anyone personally at all. I'm stating the cold facts. Intimate provider details should most definitely be shared via PMs. However, you're all in support of RateMD and other open tools EXCEPT when it comes to the precious LLMDs because they are given immunity. It's all about perspective. Be responsible with the information, considerate of people's individual circumstances, and we'd all function better I believe!
Posted by jam338 (Member # 14002) on :
With all due respect, in my opinion, describing anything on this thread as a witch hunt is extremely disengenious, results in debate baiting (whether intended or not)and injects non-constructive drama; none of which are helpful. I hope it stops.
I am an extremly sick lyme and mold patient trying to get help and offer help to others. Nothing more; nothing less.
I am in the middle of a mold crisis with my home. I have now learned that mold may have very well be the root cause that deregulated my immune system and allowed lyme and viral antibodies (designed to protect me) to manifest into these diseases. Some of you may be in the same situation and not even know it, especially those with only a clinical diagnosis of lyme, but more on that in a following post.
I asked a very simple appropriate question to help me sort out my rather complicated situation. Thank you to those who have constuctively participated to help me sort through considerations.
Littlelymie19 asked me about my personal experiences with this practitioner. I honestly responded regarding my own experience, as did others. Clearly not everyone has had the same experience. However, I would say that would be the case with any practitioner, not just this one.
I have repeatedly said I hope my situation is a string of fluke things. I don't know how many more times I can say or emphasize that.
Seekhelp, thanks for enlightening us about the proces of labtest/practioner rate setting discretions. I had no idea, but that explains potentially what happened as to why I was charged $600 for a lab that CD57 had done through a different practitioner for $120. This discussion has been productive and uncovered an even bigger issue that I was totally unaware of.
Had I not asked a simple question about a 3 min reading charge I (and perhaps others) would have probably never learned about the more important larger issue with the lab test cost discretions that CD57 and Seekhelp have shed light on. Thank you.
Posted by jam338 (Member # 14002) on :
R62, please don't worry, a hijacking might be just the thing this thead needs! Mold is something several of us have been talking about, here and elsewhere.
Mold is a serious issue, especially specific strains known to be caused by water damage. However, certain molds, like the very dangerous stachybotrys black toxic mold, can live with just moisture from the air. It does not need a high content moisture source, and it is the most toxic mold with high health risk factors.
Aspergillus and Penicillium are among the high health risk factor molds, but they need a moisture source to live on (usually water damage).
It can be difficult to get clear and creditable information about mold. Like lyme disease, no 2 experts seem to say the same thing, the CDC guidelines are not what they need to be, and most family practice doctors are unaware and don't know how to diagnose mold sickness. Medical school covers about 2 hours on mold risks and health factors....sound familiar?
In otherwords our risks of getting mold sickness from our living and/or work environment are probably far greater than our risks of getting tick/critter bit.
The symptoms of lyme and mold sickness are basically the same. There could actually be people on this board, those with only clinical diagnosis of lyme disease, who may actually have undiagnosed mold sickness!
The only way to know is to first test your body to see if your body has developed antibodies in response mold exposure. The blood test is through the Esoterix mold test through LabCorp.
If you have high antibody reaction on the test, it validates you have had exposure to those specific species of mold. The lab test tells you exactly what molds, but of course is only testing against the strains of mold your doctor asks to be tested. There are thousands of strains of molds, not all are dangerous. So, you need a mold literate doctor to request the right tests.
Next, you need to determine WHERE the level of mold exposure is coming from. It could be your living environment, your workplace, your car (especially if you have long commute daily and your car is not garaged and is out in the elements where you could have some water intrusion). One key to look for is SMELL. Mold usually has a pungent smell. However, after a period of time mold can stop to smell.
In order to do an inital smell assessment, it is recommended that you stay away from your home for a few days and allow your nose to acclimate to an unexposed environment. When you return to your home with a "new nose" it will more easily detect any unusual oders that have previously become accustomed to and perhaps no longer even notice.
You also want to do a visual inspection of attic, crawl space, basement, all rooms, particularly any rooms with a water source (bathrooms and kitchen).
If you have a frost free freezer, you will want to inspect the drip pan under the refrigerator. We found quite a bit of mold in ours. At the time we didn't know better and immediately cleaned it. Now, I know that prior to cleaning it that we should have done a surface swab or tape lift test to have the mold tested to see what species of mold it was.
You also want to inspect your hot water heater area, see if there are any leaks. We had a slow leak where there were no visible signs of leakage without looking into the hot water closet. How many of us regularly inspect that area? You can protect against risks if you ensure there is "catch pan" under the hot water heater. Any hardware store sells them near the hot water heaters.
You will also want to inspect around your air conditioner, check the drain tube to ensure it isn't clogged. Mold remediators recommend that put bleach through it every 3-4 months. We never knew that.
There are a variety of ways to mold test your environmental exposures. The are pros and cons to each, costs vary greatly, and again no 2 experts agree and the government guidance standards are not what they need to be.
Consequently, the confusion causes people to just call in what they think is a professional mold remediator who sometimes is only a person who paid for $100 online course and was given a certificate of completion. With that and a $500 of equipment, "I are a mold remediator and am here to help you".
The horror stories across the country are frighening. People have refinanced their homes, entrusted remediation to an unqualified person who was basically clueless how to protect the home against cross contamination risks.
A botched remediation process can end up spreading the contamination throughout the entire household, rendering the property unlivable and unsellable. A homeowner's nightmare.
We started our mold education process with buying several books and DVDs written by doctors, mold remediators, and a mold remediation training course. For an additional $50 I could now get a certificate from Allstate Home Owner's Insurance saying I am a certified mold inspector. Who wouldn't trust that as being qualified, right? I do NOT consider myself to even being close to being a qualified mold inspector. But, I am a better educated consumer as a result. I will hopefully be able to better protect my family from harm that I was previously unaware existed.
If you suspect you might have a mold problem, I would advise that you NOT immediately contact your home insurance. Not until you educate yourself about the risk in doing so. The following is what we learned from a mold book written by a former insurance agent.
Insurance companies have had to pay out so much in mold claims over the last decade they now deny and litigate almost all claims.
The onslaught of mold claims has resulted in insurance companies developing exclusion addendums to home owner policies. For most, if you haven't purchased a separate mold rider coverage, insurance will be denied and have to be litigated. If you had water damage that wasn't repaired within 24-48 hrs. it will be litigated as homeowner contributory neglicence for not having done regular home inspection and repairs as needed. They have their whole defense system in place waiting for your mold claim to arrive, be denied, and then raise your rates.
Most importantly regarding insurance claims, you should know that very strict practices have been put in place where IF you have a mold claim, your insurance can be cancelled. With some companies even an inquiry call about mold can flag you as a potential a high risk homeowner. High risk homeowners, like high risk drivers, go into a insurance check data bank.
Insurance from thereon out, if you can get it, will be at a high risk premium.
What I have learned in my own situation and experience is that it is an issue where there has been substantial fear mongering in a very unregulated industry. And, how mold is viewed and handled can vary vastly different state to state.
For example, the doctor in Florida with whom hubby and I had a phone consultation yesterday, she recently moved to a large town in FLA a high humidity state. Mold thrives in humidity as it is a moisture source. She said the town (maybe the state?) requires that all lease agreements have an MOLD Awareness & Prevention Addendum. It is a basic help guide warning renters about the risks of mold and step by step what they can and should do as tennants to keep risks down.
All states where the humidity can get over 60%(high risk mold areas)should have such a requirement and guide to renters/homeowners. They don't.
It is up the public to take personal responsibility to know and manage your own family's risk factors. Don't wait on the government to do it for you. It will be too late. How many years have they known about lyme and not adopted proper standards or trained doctors? The lyme crisis has existed for about 3 decades. The mold crisis has existed for about 2 decade.
So, you have to be proactive and learn about it for yourself. Hopefully not in response to a personal crisis situation as my husband and I are having to go through right now.
The only state that I am aware that has an active public awareness campaign to make its residents mold literate is Florida.
Florida, and its residents, learned hard lessons through the succession of many devastating hurricanes. Horrors of mold stories resulted with water damaged homes. The next lesson learned was hey, even without hurricanes Fla residents are at risk because they learned that just the high moisture in the air, humidity, presents mold risks.
So, they developed a public campaign awareness with MOLD ADDENDUMs to leases. Here is the Florida Property Rental Lease Mold Addendum I found online:
Everyone could educate themselves by taking a minute to read through these documents. It is especially important if you live in a part of the country where the humidity factor reaches 60%; a higher risk area.
Each document is a couple of pages, easy bullet format to read. They basically give practical advise to ensure tenants are aware of what they can do to cut down on daily indoor mold risk factors. An ounce of prevention is worth a pound of cure.
I learned this from the doctor I spoke with yesterday, Dr. Mary Beth Short-Ray, who was thrilled Florida is so proactively advanced in this area of mold prevention.
Dr. Short-Ray recovered herself from mold sickness. She ultimately had to move out of her house due to mold issues. She spent thousands of dollars professionally remediating, and the problem kept coming back. She wrote the book, Surving Black Toxic Mold Symdrome, to help the public understand about mold risks and how to protect yourself against in an unregulated industry. She is still paying off debt for repairs in house she can't even live in.
She was terrified about looking for a new place to live where one does not know if there is a water damage history of the structure. Knowing that Florida has an active campaign about mold awareness helped her in making decisions about her new living environment.
I wonder how many among us have mold problems and may not even know about it?
What several doctors have told me is that if mold is a factor in your illness, it must be treated first, before lyme. I don't yet fully understand all of why that is, but 3 doctors have said it.
If I understand it correctly part of the reason is that an underlying mold problem will deregulate progress of lyme treatment. Perhaps treating both simultaneously might overload the detox system. That would be a particular risk factor for those who may have a methylation detox pathway block, which I do. Maybe those without the block could treat simultaneously? I don't know. Just posing questions for others to consider in trying to find the pieces of the puzzle to your illness.
Some LLMDs know about the mold factor risks; some don't.
There is just so much about all the nuances of chronic illness that it seems we have to know or learn for ourselves. Thank goodness for forums like this that gives us the ability to share information and learn from one another, hopefully in a constructive healing way.
[ 05-08-2009, 02:05 PM: Message edited by: jam338 ]
Posted by emla999/Lyme (Member # 12606) on :
Jam338, I completely agree with you about the health dangers that being exposed to toxic mold and mold mycotoxins can cause. Illnesses caused by indoor molds and mycotoxins are probably more common than people realize.
Exposure to toxic mold and mold mycotoxins can also come from your diet.
Poisons of the Past: Molds, Epidemics, and History by Professor Mary Kilbourne Matossian
Thanks jam and emla for the great mold info.
Posted by TerryK (Member # 8552) on :
I tend to agree with Keebler. I think it is important to be very careful when discussing practioners in a public forum.
This sort of discussion can can have serious consequences for the patient and the practioner. If you have complaints, please, first discuss it with your practioner. If you get no resolution, then, if so inclined, register it with Metallic Blue.
Good mold info. I think it is a critical issue for some of us. Personally, I would like to see the mold discussion continued in a different thread and the discussion of the practioner go away.
Jam - have you asked Metallic Blue for any feedback that he may have?
Terry
Posted by jam338 (Member # 14002) on :
Emla999/Lyme, thanks for link on more mold information. I have read your other mold posts with great interest, especially now that I know this is a problem for me. You definitely have insights about the mold issue that we can all learn from. I have SO much to learn and am overwhelmed with it all. I have a question for you or anybody who can answer it.
Are mycotoxins and biotoxins the same thing? If not, how are they different? What do we need to know about that?
In dealing with the 3 different doctors I have heard both terms used. Does one related to mold and the other relate to lyme (I have both)...or are they synonymous and used interchangeably? Just trying to delineate the distinctions.
Dr. Short-Ray, the medical doctor in Florida that I spoke with on the phone, gave me a lot of good information. I haven't yet checked all this out, but wanted to go ahead and post the information since a few people have PM'd and emailed me asking that I please post more specifics about her treatment recommendations.
I think there is more on the tape from my phone consult with her, but here are a few notes of things I scribbled down. I was having a very difficult day so didn't write much as I knew I had the tape for review later.
Please understant that I have not yet researched any of these things so I can't answer questions about any of it yet.
Maybe others, if interested, can help research this list further and we can post and share information we learn to help each other.
Ok, here is my partial list:
-ERMI Dust Sample Testing $360
-Instant Mold Test Pen ($15)
-BENEFACT (thyme oil)(mold structural treatment)
-Structural Pasteurization Process (mold structural treatment) (baking house process at 140-200 degrees to kill mold)
-Modiflan (brown seaweed, exc. for detoxing and good option for those who can't tolerate CSM)
-PK Protocol @BodyBio.com
-Book: Biotoxin Illness
-She also gave me a website which I failed to write down but have the phone consult on tape so will check and post it later. She said to go to the website and locate a holistic allergist in my area. She said find someone who is environmental mold literate and inquire about their ability to give "neutralization provokation allergy shots". If I understood it correctly it is something that neutralizes the body's reaction to mold (probably over time, a succession of injections...just guessing). She said a few environmental doctors around the country are reporting really good results with it.
Posted by emla999/Lyme (Member # 12606) on :
Jam338, thanks for the complement.Actually, I am relatively new to molds and mycotoxins as well.
Last fall a friend of mine was diagnosed as having toxic mold induced illness. So I began to look more closely at how toxic mold and mycotoxins could impact our health.
And what I found and learned was shocking to me. The symptom similarities between chronic Lyme Disease and chronic toxic mold and mycotoxin exposure was amazing. At least it was amazing to me.
That friend of mine is currently under the treatment a doctor in Arizona that specializes in treatment of toxic mold and mycotoxin exposure. And so far so good.
Now, to answer your question on the difference between biotoxins and mycotoxins.
Essentially, Biotoxins are a CLASS of toxins that includes a broad range of toxic substances.
Mycotoxins are a member of the Biotoxin family. So, Mycotoxins are classed as a Biotoxin.
Another example of a Biotoxin would be Phycotoxins from phytoplankton.
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