posted
I read you can't post Dr.s names on here, but I see people abbreviated by a letter, so here goes. I filled out a form online to a Dr. S in Florida who offers a free 5 min. Consult over the phone. I was allowed to ask 2 questions. I typed in all of my information and I got a call back from this Dr. in less than an hour last night.
I see this Dr. has written many books and appears to be well known. He quickly confirmed my diagnosis on the phone and asked if I could fly to Florida from the DC area to see him. He spoke so fast and I pulled out my recorder to I could re-listen to everything he was saying.
He sounds smart as can be, but also sounded like a salesman. I don't want to judge anyone, as I need help. I'm just wondering if this is legit or not. Florida is a big trip for me in my condition and while we were on the phone, my email box filled up with a registration sheet and all sorts of articles this Dr. has written on Lyme Disease.
Also, when I opened the first email, I saw the fee to see this Dr. was $875 per hour, money I don't have.
So I ask again, what gives ? Sorry folks.. I am so new to all of this. I'm so confused about how to get well.
Shannon
Posts: 32 | From DC | Registered: Jan 2009
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1Bitten2XShy
Unregistered
posted
IMO there are other Dr.'s alot closer to you, that are very good and not as much $$$. I have not heard alot good about this Dr.'s bedside manner.
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
this is a hoaks no doctor in the country charges 875 an hour there are many docs in the maryland,va dc area to use.
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
Just to correct a misimpression, there are many doctors that - if calculated on a per hour basis, *have* to charge more than $875 per hour, especially if one takes into account rental prices of real estate these days.
We always tend to think of a doctor's fee as going strictly to him or her, and not going to things such as 1)rental of land, office building space, equipment in office, and medical equipment 2)payment of salaries of office staff, services such as billing, telephone coverage, 3)insurance of every conceivable nature 4)professional costs of keeping up with the latest advances 5)costs of doing business in the state, licensing fees, cost of keeping business registered 7)massive taxes of every conceivable nature including *business taxes* as well as personal income tax on what is left over and finally 8) whatever is left, if anything, goes to the salary of the doctor.
With Lyme specialists, as with other specialties, the initial consult fee is often for a bloc of time and not just the seven minutes that HMO's have calculated that a doctor can evaluate the patient, do a physical, check for all vitals as well as specific diagnostic criteria, determine which medications or course of treatment will be best, write the instructions or prescription, and finally - actually interact with the patient. SEVEN MINUTES.
How many of us can thoroughly list our symptoms in less than seven minutes - JOKE, friends!
(this is why it's good to take a list completed in advance of all symptoms and to use some of the lists online to check for those you may have but may not have specifically attributed to tickborne diseases)
OK, take what the normal doctor is getting for their seven minutes and multiply by 8 = 56 minutes, 4 minutes for running from room to room.
You are going to probably have a lot more than $875.
At any rate, as I was saying, most specialists or even good doctors seeing a patient for the first time charge a more substantial up-front fee.
Specialists who spend an hour to two hours with a patient, and yes, some Lyme doctors do spend 1 - 2 hours with a patient, are going to have an upfront-fee that seems astromical on first hearing it.
But think about the time, think about the value of a thorough consideration by a doctor who is knowledgeable about tickborne diseases and not dismissive of the patient, like most doctors are with tickborne disease patients due to a lack of knowledge, fear, worries about treating a controversial disease or cluster of diseases, fears of losing licenses and so forth not to mention pressure from their professional society NOT to adequately treat your tickborne diseases.
It's like the TV commercials - PRICELESS! But nevertheless, you want that type of consideration. In an ideal world, we could get that easily from every doctor we visit and at a reasonable fee in accordance with today's failing economy.
In the real world, we have to pay a large upfront fee to what we consider Lyme literate doctors to justify them spending time with us with a potential disease or set of multiple diseases that have a long list of symptoms and some very tricky diversity depending on which strain or strains of those diseases the patient has!
WOW! Who would want this job, anyway? Must be some dedicated doctors out there.
I do agree it is heartbreaking to finally figure out that this may be what the patient has, or to have positive diagnoses from lab testing, finally find someone who the patient thinks may treat, and have to figure out how to afford that up=front fee. Many folks by then are too debilitated to work, or to still have insurance coverage.
Did I say coverage? Haha, joke.
We all know most insurance companies are covering a SMALL PORTION of the fees involved with diagnosing and treating tickborne diseases.
I sympathize with everyone out there who is attempting to get diagnosed and treated much less have the costs covered in any part.
But if we want the initial consideration by someone willing to take the time and take the RISKS, we have to compensate for their expenses, even if the initial fee is somewhat heart-stopping in everyday terms.
I should add that costs for insurance have driven many more doctors out of business than fears of losing licenses or poor business practices.
In the Northeast we all know this from what has happened with OB/GYNS who have had to stop delivering babies due to insurance costs, imagine that!
Insurance costs probably outpace the costs of all of the salaries in an MDs office these days.
With respect to decision making on a particular doctor at a distance, its possible both that the doctor is an expert and worth the money, and that a patient may not be able to afford the cost of the total package including travel, and may find an LLMD that is closer that could function quite well. Ask around among those whom you meet in your area who have had tickborne diseases.
Good luck!
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I know several people that have seen him. They weren't happy. He has a great big fancy website and has written many books but as far as being a great doctor I think his walk is better than his talk.
I think he should stick to writing books.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
Thank you everyone for your comments. I knew it seemed too good to be true. When I saw the free 5 minute consult, it raised an eyebrow, but I filled it out anyway. I guess at $875 per hour, he needs to do this do maintain a client base. It might be a way of making great money without having a heavy patient load, just my thoughts based on your replies. Who knows ?
Shannon
Posts: 32 | From DC | Registered: Jan 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I know who you're talking about. You're welcome to e-mail me for reports from patients on this doctor. I collect them.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Also: You're welcome to e-mail me if you're looking for a good doctor. If you're willing to fly to Florida, you can easily see the best of the best without trouble, and given you live in DC, you aren't far from the best of the best.
Mail me, and I'll give you all you need.
-- Mike
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I don't know who this docotr is. I think you should find a LLMD within driving distance to where you live. You may find it necessary to visit him/her for urgent matters in the future. A LLMD long distance does not make sense.
His fee is out of sight!!!! My LLMD charges much, much, much, much less - and he is also VERY SMART.
Use your resources wisely - prepare yourself for "the long haul" regarding treatment.
Good Luck and Get Well, -p
Posts: 641 | From So. CA | Registered: May 2008
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quote:Originally posted by stymielymie: [QB] this is a hoaks no doctor in the country charges 875 an hour there are many docs in the maryland,va dc area to use.
docdave
yes, they do!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I've had experience with that type of person/doctor That does not sound like a good situation to me AT ALL. Your description gave me a very bad feeling.
Posts: 311 | From CA | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I sent her a great list and advice on how to handle the doctor(s). She'll be golden I think.
Report back here to let us know how it goes.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
docdave, yes, there is one around $1200 - $1300 per hour! uffda big time
most reasonable one i know in MIDWEST is $100/hr! what a difference.
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
well i guess i should have treated lyme patients instead of doing dentistry. i could write all the scripts i could with my dental license. i can see if they charge 250 per patient for 15 minutes but even still that ridiculous. the orthopedic surgeon that did both my knee replacement got $6000 for both knees. thats about $1500 per hour his fee alone/ most orthopods are the most well paid docs in the profession except brain and cardiac surgeons.
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Regardless of thoughts about this particular doctor,
OptiMisTick makes some very good points in what it takes to support a practice.
After expecting miracles from similar consults with other doctors over the years, I learned that a five minute consult is just to see of there may be a match with intellect and personality. It is unfair to think any real doctoring can happen in five minutes, however, is it a very nice thing to offer.
If he sounded like a salesman, my guess is he was trying to say a lot in a short time. And dealing with matters of such serious proportions as tick-borne disease would put fire under anyone to be sure the caller gets to the right diagnostician and treatment.
Again, not getting into opinions about this doctor, it is very nice that he shares some research from his hard work.
I admire any doctor will do that. I often suggest people buy several books (from more affordable authors) but I've never been able to afford the books by this guy. So, seeing that he does share some of his work - well, that can be a very valuable gift.
Be sure to read all that he sent, even if you go elsewhere. While what any one author writes may not be the full picture it can sure add to your knowledge base.
Good luck with what you decide. I'm glad to see METALLIC BLUE came through for you.
posted
Michael I send you an email thanking you for the beautiful way to go about finding a good doctor. I just wanted everyone here to know you should turn to Michael for the approach he offered me if your having problems. Very well written email he sent me.
I also wanted to ask a question:
This Dr. S in Florida spoke about an herb called Artemisinin that he has had great success in treating babesia. Was just wondering if anyone has tried this, had success with it, or has heard of this as a good thing to use while searching for a Dr.
Thanks again everyone, what a wonderful board.
Shannon
Posts: 32 | From DC | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Yes, Artemisinin is splendid. It is used to treat malaria. For those with TBD (tick-borne disease), it is used to treat babesia (also a protozoa like malaria) and it also may have some effect againt lyme.
Because it could affect the accuracy of testing that will be done and also make you feel worse (when TBD are hit with meds you can feel worse with what is called a herxheimer reaction),
I would wait to begin anything of an antimicrobial nature until after at least making your LLMD appointment. You can ask at that time on the phone if there is anything they suggest you take.
Taking supportive nutritional supplements should not be a problem, but limiting it to the basics seems best. Again, the office manager of the LLMD with whom you schedule can offer more guidance.
You can find out much more about in the book and links below. There is a lot you may be able to do with self-care and diet in preparation for seeing the LLMD. If those matters are taken care of early, you will rise faster once you get going with treatment.
Good luck.
-----------
This book, by an ILADS member LLMD, holds great information about treatments options and support measures:
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
There are good LLMD's in the DC area, and some are taking new patients. You can PM me for more info. I'm in the area and keep up with current input from patients in the area.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Where can I get this Artemisinin from ? Are there specific brands. Artemisia annua is known in the United States as "Sweet Wormwood" "Sweet Annie" or "Annual Wormwood." It is often sold in the United States as artemisinin. I found this information from another site.
So, again, where do I buy this from and what is the recommended dose for babesia. I appear to be infested. I think I'm Herxing everyday now. It appears that the antibiotics let the cat out of the box. I have not been the same since I started them last Friday and only taking till Sunday.
I can't think straight most of the day, my legs are week, still dealing with intense anxiety, elevated heart rate, shortness of breath, I'm shivering with a temp of 96.3, my neck is now stiff like a board. For some reason, I can't seem to tolerate the Anxiety and Confusion. I never had OCD, but now I can't get my mind off of all of this discomfort. I got a PM from someone who told me the good thing about Lyme Disease is that it won't kill you and the bad thing is that it won't kill you. How long do most suffer like this ? I can't imagine going on like this for years to come. I would only want to live like this for the sake of my kids to have a mother, otherwise this is no life.
Shannon
Posts: 32 | From DC | Registered: Jan 2009
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Where can I get this Artemisinin from ? Are there specific brands. Artemisia annua is known in the United States as "Sweet Wormwood" "Sweet Annie" or "Annual Wormwood."
It is often sold in the United States as artemisinin. I found this information from another site.
So, again, where do I buy this from and what is the recommended dose for babesia. I appear to be infested.
I think I'm Herxing everyday now. It appears that the antibiotics let the cat out of the box.
I have not been the same since I started them last Friday and only taking till Sunday.
I can't think straight most of the day, my legs are week, still dealing with intense anxiety, elevated heart rate,
shortness of breath, I'm shivering with a temp of 96.3, my neck is now stiff like a board. For some reason, I can't seem to tolerate the Anxiety and Confusion.
I never had OCD, but now I can't get my mind off of all of this discomfort.
I got a PM from someone who told me the good thing about Lyme Disease is that it won't kill you and the bad thing is that it won't kill you.
How long do most suffer like this ? I can't imagine going on like this for years to come.
I would only want to live like this for the sake of my kids to have a mother, otherwise this is no life.
Shannon
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Be careful with artemesia. It increased my liver enzymes quite a lot everytime I tried to use it.
I think someone else determined that it caused a problem for them too but I'm not positive if they found out for sure whether it was art or not.
That said, I know that many people take it with no problem.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
It's best to see if this is what your new LLMD would want you to take. If so, they would tell you the best quality, the right dose for you. You also may need some preparation before beginning it. OR there may be a better medicine for you.
With the symptoms you are currently experiencing it could be dangerous for you to start something new that can also cause a herx.
What is your liver support right now?
You might want to increase your magnesium level to help decrease the anxiety.
-----------------
Wondering if artemisinin would interfere with what you are currently doing, I see that you posted your current list of meds at this thread a few days ago:
Hi I'm new here and recently diagnosed with Lyme Disease. It appears I have Borrelia, Babesia, and Bartonella.
I only tested positive for the Babesia, but my Dr. thinks I have the Bartonella as well. It appears I've had this for a year now, but can't say for sure. . . .
Tindamax 250mg twice per day Bactrim 1 tab twice per day
Biaxin 1 tab twice per day N-Acetyl Cystine 1 tab twice per day
B12 Sublingual 1 tab once per day Mycelex troch 1 tab on the tongue 4 x day
BTW, the Dr. gave my Glucothione and B12 by IV injection in her office 3 days ago.
. . . I'm taking Xanax and Klonopin too . . . .
==============
After seeing what meds you are on, I wonder if you might call your current doctor and explain what is happening? I am sure s/he would want to know and may be able to help.
You may have to slow down on the meds a bit, but professional advice is best either with your current LLMD or the one you are intending to start with.
posted
I have to find a new Dr. after everyone told me I should have never been started all 3 drugs together and at the high doses I was given. To me, this is unacceptable that you guys know more than the Dr. I was referred to.
Having a Dr. doesn't get you well unless you have the right Dr. I spent 3 hellish days in the Hospital and I still feel terrible even being home for 24 hours.
I'm just looking for something to take until I can find another Dr. I still have this Glutathione and B12 sitting in my fridge and I don't know what to do with it. I'm scared to take anything right now after what just happened to me.
I kinda want to let my body settle down a bit before I put anything else in it.
I only asked about the Herb because this Dr. S from Florida who called me and gave me my free 5 min. consult spoke about how wonderful this Herb is for babesia. He might charge alot, but many are saying he is a smart man, but cocky and rude, etc. So, if I rely on the smarts, then maybe this Herb is something to try.
I don't know, I'm kinda lost right now. I'm very scared. This is all so unreal. My life seemed to change overnight even though the symptoms have been getting worse over time with new symptoms now each and every day.
I'm sure this is what everyone goes through in the beginning, so there is that psychiatric phase you must get through to ground yourself and accept what is to come. Personally, I can't imagine things getting any worse than they are, but I have a feeling they will, and again, I'm scared to death. Suffering and torture is not something I'm interested in living with.
There must be something good from all of this. In the end, I will figure out what it is. My entire life, there was always good that came from bad. And I mean every time when I say this. So, I will suck it up and deal with it for however long it lasts as I can't break the pattern. I just hope the good in this isn't to realize what a good life I had.
Shannon
Posts: 32 | From DC | Registered: Jan 2009
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posted
Don't forget that art should be combined with something like zithromax in order that you don't become resistant to the art. It can happen pretty quickly.
Wait to see what your new LLMD suggests. Art may be something you'll want to try later. I found it very helpful for me in getting rid of babesia.
Do you have babesia??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
You might want to consider taking the glutothione asap, it helps with the herx's. When I take it, I feel better immediately. Also, lemon in water and a lot of fluids also help. Good luck, I would definately agree to hold off on meds until things quiet down and you can speak with your doctor.
Posts: 48 | From nj | Registered: Aug 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
You can try taking the medications you were prescribed but take them gradually one at a time. That would be perfectly fine in my non-medical opinion. Do it in your own time though, you know your body.
Additionally Squash, I couldn't PM you. E-mail me to get the information you want. E-mail is below.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I agree with the others that you should find someone else!
I have purchased and read a book on bartonella written by this guy and even with the way he writes the book, he appears to be out to make $$$. It comes across as very unprofessional.
He may know something about lyme and coinfections, but I wouldn't trust him as far as I could throw him.
As for the artemisinin, it is an herb that is widely used for babesia treatment. My twin 4 year old boys are on it (100 mg twice per day). We buy Allergy Research Group brand.
I don't think you need to take an abx along with artemisinin, but many believe that you need to pulse it because your body produces an enzyme over time which can make it ineffective. I give it to my boys for three weeks and then take one week off. They are also on Mepron and zith for the babesia.
I don't see why you couldn't take it while you were waiting to see an LLMD, but I wouldn't take it for too long without getting your blood work done.
One excellent option for you would be to consult with Dr. Zhang. My LLMD told me that he was one of the first to use artemisinin to treat babesia!
You do get a free 15 minute telephone consult with him if you fill out his questionaire on his website. I think he's at sinomedresearch.com or something like that. Just do a search with his name and "lyme disease" and you will get there.
If you buy his herbs, you can get additional free consults every month. I did his protocol for three months this summer and it did help. It could be a good option for you until you can get in to see a good LLMD!
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Yes, his program is very good. I did very well when I did it.
After you have read his book, he is glad to talk to you. The reason for requesting that one read the book first is that it is a lot to take in and digest. Many questions will be answered there and the more important questions can then be discussed that are individual to your case.
The book is about $20 and if you purchase $5.00 more from Amazon, shipping is free. Also available through Hepapro's site.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote: One excellent option for you would be to consult with Dr. Zhang. My LLMD told me that he was one of the first to use artemisinin to treat babesia!
You do get a free 15 minute telephone consult with him if you fill out his questionaire on his website. I think he's at sinomedresearch.com or something like that. Just do a search with his name and "lyme disease" and you will get there.
If you buy his herbs, you can get additional free consults every month. I did his protocol for three months this summer and it did help. It could be a good option for you until you can get in to see a good LLMD!
tickbattler
I want to reinforce what she's said here. I also know Dr. Zhang. Real nice guy, and his products are actually effective (Who knew?!) -- but seriously, his Artemesia is probably one of the best around. It's more expensive, but a lot stronger. His Coptis is very good as well as the HH. I didn't see good results with Allicin, but I'd been on Coptis and HH for awhile.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
I suggest keeping discussions or interactions between patients (or potential patients) and doctors PRIVATE and not posting these details on a public Internet BB.
Thanks and take care,
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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