My LLMD sais I am toxic and wants to clean me up quite a bit.
He then wants me to see a Nauropthic doc in addition in Reno at Conscious Living in Reno.
Has anyone been to either one of these?
Thanks for the help guys.
Posts: 111 | From San Francisco | Registered: Feb 2007
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SForsgren
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I am going to do phone consult with Dr. R. and CL in Reno later this month. I have heard some good things about her and hope to learn a few more gems of information.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
I know two people that go to DR. R in Portland/Tigard that are VERY happy with her. She works with Dr. H and they do well together.
She is not against antibiotics as the one person I know had a PICC line for several months. She seems to be very good at the detox things too.
If you can go to her, I would, she is just too far for us. We used to live in Portland.......She does phone consults, like Scott says.
HUGS,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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CD57
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posted
I have not gone to the Portland clinic but I have consulted with Dr R, the naturopath in Reno that Dr H works with (Jen, you and I have the same LLMD). Let me know how the Portland clinic goes.
I can tell you that Dr R in Reno is good, but INCREDIBLY expensive. She didn't know a lot about Lyme and co and how they work also; I was surprised because I had heard she was a specialist. I had to give up seeing her after 4 appts because of the cost ($1k each visit) and the number of supplements she sold me was overwhelming and just didn't work with my core protocol. I have met other patients in Dr H's waiting room who have said the same thing.
I don't mean to be negative, just passing on my experience. She's very passionate about her work and has worked with Dr K in Seattle and Dr Cowden as well. Hope you have great experiences if you decide to work with her. One thing I can recommend if do: ask her office staff up front about the costs you will incur as a patient. Dr R charges for "charting time".
Posts: 3528 | From US | Registered: Apr 2007
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Keebler
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Are there not NDs closer to you ? Perhaps one of them would like to come here and visit and bring back words of wisdom to your area ?
So much of detox just takes time and self-care or IV's. You could get a home protocol designed for you, I suppose, and the Portland clinic is very knowledgeable about lyme and co, and is an ILADS member.
You might also connect with the Portland Lyme group and ask them. www.oregonlyme.org
I just emailed someone in that support group to see if the audio lectures can be forwarded. Will let you know.
Also - many NDs detox hard - what normal people take, would land some of us in bed for months. I've had this happen a couple times with even hydro therapy (hot/cold compress tx). It was supposed to be so good. Not for me.
So, it is good if the person treating you really knows about this population.
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[ 11. January 2008, 04:29 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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CD57
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Portland clinic sounds great!
Keebler, good idea re: the NDs. There are tons here in the Bay Area and many of them are learning about Lyme. In fact my LLMD said that there are a lot of them that recognize it in their patients now and start them on the road to diagnosis/treatment. I just went to one recommended by my LLMD and who was a "specialist" in Lyme and co (I'm not convinced this is the case though).
Posts: 3528 | From US | Registered: Apr 2007
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Thank you for asking in addition to all your support you have offered me through my last 2 months of hello I have Lyme, Babesia, Bartonella and staph plus a shot gallbladder..HA!
Rifampin, then Zvoxx and now plain old doxy are what has helped with the staph.
The culture shows it's gone in the ears, my LLMD knows better and is keeping me on Doxy because the culture sensitivity test showed it was sensitive to this.
Both LLMD's that I see agreed if it was'nt gone- Vanco time. I am to weak and am jacked up from the latest events the last few months to go on that strong of drug...plus anything that risks the chance of losing your hearing permanently just is'nt for me.
Sparkle-With the clinic, I am pretty sure it's worth all they do. It's not a $,1000.00 for "A VISIT", it's for a week on an intensive detox and balancing.
Dr. R from my understanding consults with to make a customized assessment based on what your needs are.
If you added up all you get in 5 days and got it all indivdually somewhere else you would be looking at around twice the amount.
From my understanding per my LLMD who is pretty well known as well as wonderful...Dr. R is quite Lyme savvy and has worked with his sickest patients and helped them all, quote unquote from my LLMD's mouth.
Sounds like others on this board have heard some other good things as well.
I am thinking I will probably go once a month because I am on a heavy duty treatment protocol and I really need some detox help.
Hard enough to orchestrate the lyme treatment on my own..let alone the detox.
I have become so disabled from the damn treatment I can't drive much these days.
I am blessed to have someone who helps me with the expenses so for me I think I am going to make the commitment.
I will let you all know how it goes.
Thanks for all the insight everyone. Please keep sharing if anyone has anymore experience with this clinic.
Jen
[ 13. January 2008, 02:26 AM: Message edited by: jenschasinglyme ]
Posts: 111 | From San Francisco | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
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The other person mentioned does not charge anywhere near that for an OV.
Labs, though, may bring the cost up - or be part of an inclusive fee for some doctors.
posted
Yes, the one in Portland OR is affordable, VERY affordable compared to the unresonable amount that some places charge. I still think that a lot of "professionals" take advantage of people that are desperate to get well.
I know for a fact she knows quite a bit about Lyme and has been helping lots of people. Dr. H consults with her. I have heard very good things about her. She is a Naturalpath, but supports antibiotics also.
When finances are an issue, even $1,000.00 for one week is outrageous.
HUGS,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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CD57
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To clarify: I did not see a doctor or go to a clinic in Portland, OR -- just a naturopath in Reno, NV, Dr C.R. She does consult with Dr H in CA a lot.
The Portland clinic/doc sound interesting. Anyone who goes, could you let us know how it goes?
Posts: 3528 | From US | Registered: Apr 2007
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minoucat
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posted
Yes, I'm very interested in the Portland clinic too.
Do they have a website, or can someone tell me how to find out more about them?
The only detox clinics I could find online were for alchol/drugs. I suppose "drugs" is relevant but not in the way they mean...
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
Keebler
Honored Contributor (25K+ posts)
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posted
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I've communicated with the Portland clinic and considered going there but I have not (yet, anyway).
One also must take into account doing what is recommended. If the budget can only take so much, there may be other ways to learn that so you can afford treatment.
However, I've listened to a couple lectures from the doctor and can put you in touch with people from that local support group who have gone.
Much of the focus - if you already have your LLMD - is to keep the liver safe, detoxing as best you can and word has it that while that office has a regular sauna that the doctor thinks highly of infrared saunas. Other symptoms, of course, would be addressed.
If one does not have an LLMD, a more detailed path would be needed - maybe more visits or piggy-back a couple at a time for the best instruction ?. The doctor would know best about that. Sometimes it still just takes time.
The doctor is an ILADS member and is familar with the top labs. the doctor also precepted with Dr. M before his retirement and emailed me a note about keeping herxes to a minimum as per some research Dr. M had been doing.
I can't say for sure that it's the magic key. People with lyme in Portland are still on the road to recovery - no one I know has joined the Olympic team. However, the doctor is highly respected by those who go there.
======
MCS
She has one treatment room set up for MCS patients (no carpet - portable space heater).
It is REQUIRED of every patient to arrive scent-free so that the MCS patients don't drop like flies. Most of us have to be scent-free anyway, so that may not be a difficult request. However, if you have questions about a shampoo or deodorant, be sure to ask.
============
I don't know how many visits it would take to set up a protocol or teach you what you need to do on your own - or how often you would have to return.
If you have a way of getting IVs close to home, a prescription could be made, I'm sure. IVs are sometimes done, but it may not be necessary.
Saving money toward an infrared sauna might be a thought for some who already have a good handle on a protocol. For someone like me, even after much study, I'm stuck. this might be a good key.
Realistically, this is still a self-care, patient-involved adventure although certain treatments are availble at the clinic. Following a certain diet would be expected, or hoped, of patients, but most of us here do that already.
Anyone who smokes would have to discuss that in advance with the clinic, partly from the allergies that other patients in the waiting room might have - as she treats many who are very sensitive and must avoid being around anything smoky.
A very nice hotel is nearby and has one quiet floor (and a pool? - chlorine alert for some). The motels near the highways would be somewhat noisy although one has soundproof windows.
There are two organic food stores, and a Trader Joe's within a couple miles. One delivers
======
If you PM me, give me a little time and I'll send the contact information and you can then direct your questions to the clinic.
-
[ 13. January 2008, 01:58 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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SForsgren
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I am told C.R. charges 235 and hour. I have not seen her yet, but I am not expecting it to add up to 1000 for a consult by phone.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
I feel frustrated when I see such charges. We are sick people. Many of us cannot work or only partially. Many of us do not have others who pay for our care. Ideally it would be great if whatever insurance we end up with would cover.
I am in the process of finding healthcare providers who do take my insurance. Whenever I am able to find one, it is such a relief. It's nice to know that not everyone feels they have to make a fortune off of us.
How about a little more willingness on the part of healthcare providers to serve sick people have who lost their finances due to having these diseases. No one asked to have Lyme, lose their jobs, their insurance, their savings, their homes, etc, and be asked to pay and pay and pay.
Excuse me, but I am so tired of seeing such high fees being charged to those of us who are ill against our will - that is, we've had no say in the matter - it just fell on us. I think it's wrong to make us suffer financial ruin as well as not be able to access anyone for healthcare. It's called, figure it out yourself on the internet, just about, for a lot of us.
Posts: 13116 | From San Francisco | Registered: May 2006
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I have not met you yet though we are in the same city and I really should do the support group.
I am so sorry the struggles you are having as well as everyone including our own (my boyfriend works 3 jobs) because of this dreaded disease.
Please PM about the support group if you can.
Posts: 111 | From San Francisco | Registered: Feb 2007
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CD57
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posted
Dr C. R. charges $235/hour for a consult. She will charge that same fee for interpreting test results, charting notes, communications with any other docs you have, muscle testing, returning phone calls, and protocol preparation. She may also want to order amino acid tests and possibly her own hormone tests, etc, (even if you have your own results from another lab) that run about $260 each. So in other words, I was surprised that my visit with her (via phone 3x, in person once) ran $600-800 for her phone consult charges, outside of the tests she ordered and the supplements she wanted me on.
Hope your experience is better, Scott, and you get the gems of info that you are looking for.
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djf2005
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jen-
glad to hear you are on a path.
best of wishes to you, i hope you find relief and well being soon.
if i can be of further assistance, please let me know.
i know you are in a lot of pain, have they determined from what? inflammation?
mangosteen may be an easy way to try to get your pain levels down.
i know for me some days when i dont need percs or advil, i can drink a few shots and it helps (along with a lot of other stuff)
no, i do not have any financial interest or ties to mangosteen. just another lymie sucker
take care
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
I saw Dr. R from 5/07 to 8/07. She did help me, and was very understanding. I think she definitely knows her stuff. She straihtened out my hormones, and put me on a pretty strict diet that put me on the right track. I was doing well at first, but then all the detoxing made me extremely ill, and I was also very malnourished and dropped to 98 pounds.
I had the same experience as CD57 and just couldn't afford her anymore. She wanted me to get my amalgams removed and also check some weak teeth, as well as go on the Cowden Protocol. That alone was going to cost me nearly $10K.
I am seeing another doctor from a recommendation from Dr. H and he has helped me with the inflammation which was unbelievable. However, I am back to hormone and detox issues. He is now focusing on my mouth too. However, not so much the amalgams, but the bone structure. I have severe neck and shoulder pain, and all my symptoms started around the time I completed my second round of orthodontia. He believes that my teeth weren't set correctly. Anyway, I still have a strong feeling that mercury is playing a part with me.
I wish you luck and hope this helps.
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