nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I saw Dr. M in WA. I had to travel 1000 miles and it was very expensive. I was worried about not getting abx if I complained so I allowed her to fill a shopping bag with supplements. I was shocked when I was charged $1000 for them PLUS $400 for the office visit.
The lab would not honor her order for tests because she is a NP and I am on Medicare. I couldn't even pay for them myself! So I can't even get blood work done to check for liver function etc. It seems like she could have told me this up front.
She requires a monthly Skype session which is $350. She told me she was giving me A-Bart and one other Byron White thing I can't remember. I was shocked when a box arrived full of supplement and a bill for $1600!!! I sent them back and called my credit cared company.
Her employee just called to tell me if I don't accept the supplements I am "not following the treatment plan". I just about lost it. I told her I can't afford that and if she insists I have those I can buy them cheaper on amazon.com. She tried to tell me they were discussed with me and I agreed to take them.
I pointed out things that she did not have listed on what I was supposed to take the first time because she just threw everything into a bag without instruction.
She prescribed Rifampin and didn't even give me enough to last until the next scheduled call. That would mean that I would run out and you get sick when you stop and start Rifampin.
I want to report her but she knows she can get away with it. Who can afford $24,000 a year for bartonella treatment! That is insane.
Now I have to find ANOTHER doctor. The GP I used to see just had his license revoked for over-prescibing pain killers. What is the world coming to?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Sorry to hear. It sounds like predatory medicine to me. Some of these docs know we will spend our last dollar trying to escape the tyranny of Lyme. It's an easy buck for them to get you on some elaborate "treatment plan".
Personally, I have used hundreds of supplements and spent thousands on them to little effect. There seems to be nothing that has yielded an obvious benefit to my condition.
I still take some religiously out of the hope that they will confer some sort of cumulative advantage over time, but otherwise I can imagine my health being much the same without them throughout the course of my taking them.
I even had to defend myself to a doctor when some supplements were clearly making me feel worse (one had high doses of sugar in it O_o).
Sorry, I'm starting to vent on your post now!
Posts: 922 | From Philadelphia | Registered: Sep 2012
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nefferdun
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posted
We can vent together! I agree with you.
I noticed the online pharmacy where I was getting LDN carries Rifampin. Thanks goodness.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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GretaM
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posted
Oh no! I am sorry Neff! What a let down for you Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
That is crazy! So sorry to hear. I have to edit out the city though. Sorry.
Feel free to PM neffer for the info.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nefferdun
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posted
I thought that might be the case. No problem.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Rumigirl
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posted
Good grief, neff, this is ridiculous!!
If you want to try to salvage the situation, IF your can work out terms that are better for you (so you don't have to start over from scratch with someone new), here is what I would do:
Write an letter via email, fax, or snail mail, calmly and rationally explaining the misunderstanding, and what is do-able or not for you. That is, that you were not made aware in the visit that more than a couple of supplements would be recommended, and that you can't afford so many.
Also, that you want the option to get the supplements where you can get them cheapest, since you need that financially.
And talk about the situation with the Rifampin rx.
I would make the letter or email not angry (even though you are, and rightly so), and ask nicely for what you need and want in the working relationship. And see what the response is.
It is actually not legal, I believe, for doctors to require that you buy supplements from them (could vary by state). I almost NEVER bought supplements from any of my docs that were
selling them. First of all, I didn't buy ALL of them, since I couldn't afford it, and didn't agree with some of them. I often just didn't mention that, and it was never noticed.
And the ones I did take, I bought where they were cheapest, which was always elsewhere. No doc ever complained about this; I did say, when asked, that is what I was doing. In my case, I can order at wholesale as a practitioner, but I didn't even always explain that.
If you do this, you can tell from the response whether you want to continue on a better basis with her or not.
The test rx problem is another issue altogether; don't know what to say there.
Arghhh! What a mess. I often have tried to salvage less than ideal circumstances, since we have so few choices of who to work with. It has often worked, but not always. Good luck!
I would be mad as a hornet, myself, but, of course, that won't get you anywhere with a practitioner with anger, hence the calm, rational approach, if you chose to go this route.
PS Don't try to have this conversation with one of her people, as you did (not criticizing), but with the NP herself. By email or letter gives somes distance and neutrality, and time for her to think.
On the rifiampin rx, she likely didn't realize that it would run out before the next visit. That kind of error can usually be rectified by an email. I've had plenty of such errors, which weren't intentional and gotten them fixed.
Posts: 3771 | From around | Registered: Mar 2008
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Lymedin2010
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posted
That is sick!
Posts: 2087 | From NY | Registered: Oct 2011
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lpkayak
Honored Contributor (10K+ posts)
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posted
That happened to me once...i was embarrassed at first-learnrd a lrsson and then go really angry
A big part of this disease is cognitive issues that make it hard to follow conversations and make quick decisions
It is too easy to call yourself an llmd and cash in
Ilads was aware of some problems with llmds calling themselves ilads certified when they werent-when i talked to them they were trying to resolve issue
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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randibear
Honored Contributor (10K+ posts)
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posted
personally I'd drop her butt but thats jus me.
I got involved with somebody like that too. she wanted 500 per month plus money for continued testing and all. worse was she wanted unlimited access to charge my credit card. I smartened up and said absolutely no way.
it's cheaper to do buhner or cowden and you can do them without a doctor.
man I hate it when they take advantage of us.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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hiker53
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posted
Nefferdun--If you follow up with the doctor, I would send a certified letter that she has to sign for, so she cannot say she did not receive your correspondence.
Makes me mad just reading this. The one time I had a major problem with a medical company that was doing my home health I.V.'s I ended up writing the state's attorney office and I got a mega big refund.
They overbilled me to the tune of $6,000 in less than two months time. Needless to say I dropped that company as soon as I saw the insurance EOB. I got the money all back.
So, it does pay to follow up.
If she is doing this to you, she is taking advantage of others and if she does not make it right, I would pursue it if you have the energy.
The other LLMD I had issues with in MO (who now has lost her medical license) I had to get an attorney to write her a letter (he did it for free, kindly) so I could get my test results. She wasn't going to give them to me unless I signed on for her treatment.
Blessings. Hiker53
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
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posted
Your being raked if you cant see it. Live and learn dump this idiot whom is using you and others to pay her mortgage.
Personally I always question the need for so many supplements. Some are useful but many people buy just end up in the toilet. My 2 cents.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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Razzle
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posted
This is not the first time I've heard this about this doctor.
I have yet to find an LLMD who is really worth the money and time locally here...
There is a good LLMD near Portland...PM me if interested...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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nefferdun
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posted
I did decide to dump her. I ordered Rifampin online but now I don't believe I can tolerate it! I have taken TWO sleeping pills and I still can't sleep. Not a good day.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Razzle
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posted
PM sent...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Ellen101
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posted
Yes, you definitely got taken advantage of. Unfortunately Lyme has become a very profitable business for some. I am very suspicious of those that recommend multiple supps, even those well known.....
Posts: 1748 | From United States | Registered: Dec 2011
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lpkayak
Honored Contributor (10K+ posts)
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posted
Neff-I bet you can take the rifampin. it helped me more than many other drugs and I have heard it has helped lots of people
I had to crumble the pill start with one little crumble and gradually take more in about 2 weeks I was up to regular dose and after I took it I really had improved I did have a. Bart and it was Bart symptoms that went away-but this is one bad that will work if you start low and ramp up
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I would go on RateMDs.com and write a review for this doctor. It is worth the effort to open an account and warn others because she is ripping people off. Sorry you had to go through that, it's not right.
Posts: 11 | From MN | Registered: Jul 2012
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nefferdun
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posted
I thought about that tarkay.
Ipkayak, I am trying to do something like that. Mine are capsules. I didn't take the doxy today. I am just going to take the rifampin this morning and not tonight and see if it goes any better.
I thought about opening the capsules to start it even lower and also to be able to take it twice a day.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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GretaM
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posted
Neff, can you return to the pharmacist and ask for 150mg capsules instead?
Tell them the big ones get caught in your throat blah blah. Maybe it will work?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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nefferdun
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I wish I had known there was 150mg strength. I don't have a refill and I don't think they will take them back. I think I even order the 300mg. Just wan't thinking.
I am not taking it tonight and if I feel this wired tomorrow I will open one up and just take half of it somehow.
There is a LOT going on in my life right now to add to the stress.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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poppy
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posted
I don't advise rating any lyme doc on a public rating website, unless you want to harm other patients. There just aren't enough of them. The letter, however, should alert the doc that she needs to be more specific about supplements, especially with brain impaired lyme patients. So, if there is a problem with so many, the patient has an opportunity to say so. Then again, how many of us have the nerve in person to do this, having gone thru so much just to get to a doctor that recognizes chronic lyme. It is good to remind them about tight finances too. A lot of us are in that boat.
Posts: 2888 | From USA | Registered: Mar 2004
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You can buy empty vitamin capsules at most health food stores. When hubby started on rifampin I split the 150 mg capsules into 3 doses of approximately 50 mg each and he ramped up from there.
So sorry to read you are having issues with yet another doc. I would not continue seeing this doc as it does not sound like they are trustworthy.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Rumigirl
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Arghh, I am so sorry that you are going through this, neff. I guess I was wrong about trying to work it out with her. I just said that, because I have had to eat too much you-know-what in the past, due to the dearth of Lyme docs.
It's horrible that she did this---no excuse at all.
Yeah, a certified letter that she has to sign setting the record straight is a good idea.
Make sure that her office sends you your records promptly.
I would be fuming. The ways we get taken advantage of by too many providers (not just Lyme docs) makes me furious. I feel like the providers just see us as cash cows. Grrrrr!!!
Posts: 3771 | From around | Registered: Mar 2008
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I went back to my top notch LLMD and then do phone consults that are under $200.
I told my LLMDs that Byron White doesn't work and that I preferred Buhner, the LLMD is okay with it. So they are okay with me buying supplements elsewhere.
Posts: 697 | From CA | Registered: Dec 2011
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2roads
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posted
So sorry neff.
I don't understand how this disease can be getting more widespread, and more recognized, yet we are getting stuck with snake oil salesman.
How is it possible decent doctors with ILADS therapy have not entered the market? They have more clout to do so then they've ever had...no?
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Catgirl
Frequent Contributor (5K+ posts)
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posted
Wow, Neff, I can't believe the luck (not) you've had with these docs (sorry)! :( Hoping you find a good one soon.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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nefferdun
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I had another horrible night and I think I need to quit the Rifampin. I took 4 sleeping pills and still didn't sleep well - that was after only taking 300mg in the morning.
I realized Rifampin lowers the blood concentrations of many other drugs and it must be affecting the sleeping pills. I read people taking pain killers have to raise their dose when they take Rifampin.
I am under a huge amount of stress from other areas of my life and not sleeping is torture. My mind can't take it. I don't have enough sleeping pills to get me by.
I am going to go back on Bactrim for awhile. I took Rifampin for about 3 months in 2009 and it didn't help at all. I had the same side effects but I just kept waiting for them to subside and they never did. I was hoping it might work this time because I think it is a new infection - not exactly what I had before.
I am thinking of ordering Cipro. I took Levaquin and got tendonitis really bad after 5 weeks but the doctor never told me to load up on magnesium and zinc before starting it or even to supplement while using it.
The thing is, Levaquin really knocked the bart down. If I hadn't gotten the tendon its, it probably would have cured me in another month, and I was only on it 5 weeks.
If I do Cipro I will load up on the minerals two weeks before starting and throughout. I will also take Methionine because that was the only thing that stopped the pain of the tendonitis. I will take a low dose and pulse it. Very scary but what else is there?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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surprise
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posted
I'm sorry Neff.
I did both Levaquin and Cipro, loaded up on oral magnesium and vitamin C, stopped exercise while taking either,
and forced myself to take a 3-4 cup Epsom salt bath every single night while on them. Body brush beforehand, then huge Epsom salt bath, every single night. I'm okay.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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nefferdun
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I ordered cipro and roxythromycin and diflucan. I have taken the roxy before and it is the best of the macrocodes for me. It won't get here for 2-3 weeks so I have plenty of time to load the minerals. I will just take bactrim or alinia until then. I order the smallest doses and will pulse the cipro. Just don't trust the stuff but I am desperate. It was cheap enough to throw away if I get concerned.
I wonder if changing drugs frequently is a good tactic or not - if we kept changing things around would they hit the pathogens from all angels, not allowing them to build up resistance - of if the opposite would be true.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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poppy
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posted
I have wondered the same thing. Does switching around keep the pathogens confused, or does it make more resistant pathogens so that one day nothing will touch the germs?
This was a lot of money, and I know it hurt to be treated like this. However, in the bigger picture, the amounts of money that are being extracted from patients and insurance companies and medicare dwarf that. And some of it is unnecessary or even fraud. When I think about how much money has been spent on doing every thing to lyme patients except treating them for lyme, it boggles the mind.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Rifampin does lower blood levels of other meds. It made my beta blocker not work much at all. And my doc never warned me. Thought it was rifampin making me tachy but it wasn't. So I can see why your sleep meds didn't work.
Posts: 581 | From CT | Registered: May 2008
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poppy
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posted
Everyone needs to read the printouts that come with drugs from a pharmacy. And then have a book like "The Pill Book." And you can also run drugs thru online checkers to see side effects and interactions. Then you won't be surprised or wonder if something is caused by the drug.
Posts: 2888 | From USA | Registered: Mar 2004
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nefferdun
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posted
I use the interaction checklist on drugs.com and the side effects.
surpirse, I was worried the ending of your post was going to be bad and am so relieved you are doing ok. I forgot about the exercise part but I don't do big work outs anyway.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Neff, sorry you are going through all this.
Please rate this doctor with specific comments on all the sites you can find. (some sites list only star ratings, some allow specific comments).
Carefully word your comments so they carry more weight to readers. Help someone else avoid her.
Also, if this is an ILADS recommended doc, just copy your initial entries on this thread and send it by email to them.
I selected an LLMD from another lyme organization recommendation, not ILADS, and did not call for an appointment until I had checked all doc rating sites.
I eliminated 2 docs who were closer to me who had poor ratings. My new LLMD is caring and not over-prescribing. And her ratings were good.
The certified letter first is a worthwhile idea IF the bag of supps was given to you by an assistant, not the doc herself. It is possible she does not know, if she herself did not give them to you. Otherwise, I would not bother.
Posts: 254 | From North Carolina | Registered: Nov 2013
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poppy
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posted
As I keep saying, I don't think it is a good idea to rate lyme docs. There are not enough of them, and if you can help to channel the practices of one in a helpful way, not in public, then this preserves the docs that people need. How do you know that this info is not used by those who are actively trying to take down ALL of our docs. No one is safe, even in states with legislation, they have to be very careful.
Everyone should be passing bad reviews on to area support groups, and everyone who is looking for a doctor should check with one or more.
And if you have a gripe, don't plaster it all over public boards. They are read by trolls looking for trouble. Take it up first with the doctor in question and then with support groups. Lacking criminal behavior, this is the way to go. There have been a few patients who took advantage of lyme docs too.
Put this into perspective. Who is worse, the doc who gives a patient more supplements than she wanted (which is easily remedied) or the host of doctors who won't treat lyme patients, lie about their test results, patients whose lives are destroyed, and in some instances die because of it?
Posts: 2888 | From USA | Registered: Mar 2004
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randibear
Honored Contributor (10K+ posts)
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posted
poppy I wouldnt exactly call her a lyme "doctor".
is this person truly a md or jus a holistic practioner?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Ellen101
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posted
Poppy a doctor who takes advantage of a patient by over prescribing unnecessary expensive supps can be just as detrimental .
Posts: 1748 | From United States | Registered: Dec 2011
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poppy
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No, sorry. I cannot agree with you, Ellen. A person can decline supplements. If you are not diagnosed in a timely way, you can die. Rather a big difference.
Posts: 2888 | From USA | Registered: Mar 2004
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Ellen101
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posted
Poppy I guess we will have to agree to disagree
People have spent fortunes on questionable treatments, supplements etc only to be taken advantage of. Sometimes these treatments do more harm than good and some can be down right dangerous. For many after spending so much of their money they no longer have the funds to get proper treatment.
Posts: 1748 | From United States | Registered: Dec 2011
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Catgirl
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posted
I understand everyone's point of view here. That said, I kind of agree with Poppy, as a person can easily decline supplements or tell the doc's office they will get their own, or a bare minimum.
I understand that the staff said you read and approved of what the doc said, but it's possible that all of this could be miscommunication too. It has also been my experience that sometimes staff members use different language, tone/manner of communication when it comes to dealing with patients (more authoritative--perhaps from stress) setting a negative tone.
Your doc blew it with the script, but that happens sometimes (no crime, and easily remedied with an email). And the doc should work with you on the supplements with what she believes are necessary, but not necessarily what she's selling.
I also agree with Poppy on not reporting this doc. She is likely helping other people. As this could be a communication issue, to report this doc would be a mistake, IMO. There are so few of them, and so many of us, and lots of trolls who would love to get rid of all LLMDs for various reasons.
The LLMDS are swamped and doing the best they can. Please, let's not crucify them.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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nefferdun
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posted
The doctor never said she did not send me those supplements herself. She also said I was not following her protocol if I did not accept them. Kind of a threat if you ask me.
I have so much going on right now I am not bothering to say anything about her. I got her name off a list someone sent me and several other people complained about her but some people liked herl
When you go on Seed A Doctor you get all the information. That is what it is for. You don't just get a list of names of doctors willing to treat lyme, you get comments about them. When people are spending this much money of doctors, which often involves expensive trips, they have a right to make an informed decision.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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You need information to know what to take and what to decline. For all you know, out of the big pile they are trying to sell you, there are actually a few things that are worthwhile. How do you know which are which? This is where a trustworthy doctor comes in.
We should be able to trust that our doctors are not trying to simply make a buck off of us - yes, they need to make a living, but asking us to buy things that have dubious value IS detrimental.
Even if something doesn't "hurt" your body (for instance, it's inert liquid that you will merely pee out), it will eventually hurt you because that is money spent on something useless that you later cannot spend on something you might critically need.
Posts: 89 | From Mid-Atlantic State | Registered: Jan 2014
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Ellen101
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posted
quote:Originally posted by woodstock: I completely disagree with Poppy.
You need information to know what to take and what to decline. For all you know, out of the big pile they are trying to sell you, there are actually a few things that are worthwhile. How do you know which are which? This is where a trustworthy doctor comes in.
We should be able to trust that our doctors are not trying to simply make a buck off of us - yes, they need to make a living, but asking us to buy things that have dubious value IS detrimental.
Even if something doesn't "hurt" your body (for instance, it's inert liquid that you will merely pee out), it will eventually hurt you because that is money spent on something useless that you later cannot spend on something you might critically need.
Agreed!
Posts: 1748 | From United States | Registered: Dec 2011
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poppy
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posted
If you are not going to a Burrascano type doc, mainly abx and specific named supplements, then you are already signing up for untested and potentially worthless treatments. People come on here all the time and extoll this or that experimental treatment. They go to foreign countries at great expense, they get stem cells, they use what sounds like sci-fi type machines, they take coffee enemas, they use kinesthesiology, and endless other things, many of which sound dubious to me. Then some people try those things and say they don't work. Some for, some against.
I say in situations like this it is buyer beware and you should be educating yourself about these things and not just jumping aboard every passing bandwagon. Then when they don't work or are too expensive, you should expect that you share part of the responsibility for going to practitioners who do these things. Don't look for apples on an orange tree.
That is why it is important to also not accept everything that some stranger says on a public forum.
I am certainly in sympathy with neff, as she has gone thru so much and deserves to be treated better. Why this doctor, I wonder, and not someone in CA or on the east coast? Not to say anyone has the cure for late stagers, but some things do work better to hold back the symptoms and if you can't be cured with today's medicine, then holding it down until something better comes along is the best strategy.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
And how is anyone to know about a given doc if we aren't supposed to rate the doc? How can there be buyer beware without awareness?
Posts: 89 | From Mid-Atlantic State | Registered: Jan 2014
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nefferdun
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posted
The doctors do not tell you up front what their protocols are. You have to find that out either by spending the money to see them or by talking with other people who have already done so.
I went all the way to AZ to see Dr. F only to be told he cannot order me any tests from his own lab and he isn't going to use another lab. I got no help at all.
So I went 1000 miles round trip in another direction to see this doctor. She also cannot order tests because I am on medicare and she is a NP, so I can't even get blood work done to make sure my liver and kidneys are ok. The $1600 in supplements was ON TOP of the $1000 I paid for supplements the month before!
Including travel the first month cost me about $2500 and if she had her way, the second month would cost me another $2000. I am not made of money. I doubt very many of us are.
She did not tell me to ramp up slowly on Rifampin. I had a pretty severe reaction and had to quit. Now I can't take anything so I am worse off than when I started and at this point 8K in the hole. I am self treating from here on out.
If there had been better information provided, I would have KNOWN! Just not fair.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
It is important to get the word out on doctors like this one profiting on Lyme. I would share your experience on groups like this one as well as sites that share ratings.
Posts: 1748 | From United States | Registered: Dec 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Please pm those of us on seeking thread so we know who the docs are-i know f in az but not the other
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"The doctors do not tell you up front what their protocols are. You have to find that out either by spending the money to see them or by talking with other people who have already done so."
Yep, that's what happened to me with one of the first Lyme docs I went to. I kept emailing asking specific questions like what's her treatment for MCS and just got a vague answer like "yes, I treat that." No specifics. I spent $800 plus supplements at our first (and only) meeting.
She wanted me to send urine in the mail to another practitioner to make drops for allergies (I couldn't get specific scientific information on how this worked no matter how many questions I asked).
Most of her supplements I was allergic to along with her drug recommendations.
I got a misdiagnosis for another medical condition and was taking the wrong med (confirmed by a specialist in the field, not Lyme related). Then, a prescription took over 2 weeks to get called in.
At that point it was time to find someone new.
Yes, she did treat Lyme and you didn't need to prove you had it, however all the other expenses and misdiagnosis was getting to be too much.
At least she ran tons of blood work that I could take to another doctor.
Posts: 2839 | From California | Registered: Jul 2012
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
It is really sad what some of us have been through. I also saw a local LLND that said she treated lyme. She promised to do tests for me IF her other remedies did not help.
3K later I realized she had no intention of doing any tests or giving me the abx I needed. And then I found out she COULDN"T do any testing because the government wouldn't allow it. She was raking in the money for as long as she could.
Depressing.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Ty for pm-your pm box is full
Thank you. Twice in the past i got taken. Once for 500. Once for about 2000.-but there were two of us
I have be err n very leary of new docs ever since
Im so sorry that happened to you
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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I have found that the rating websites I accessed were pretty accurate regarding the docs in my area that I have local feedback on also.
Poppy has a point about possible LLMD bashing. However these rating services helped me to find an LLMD who was consistently rated as listened well, spent time with me, seemed caring.
This was my impression at the first visit to this, my first, lyme-literate doc. Also the ratings were consistent with call-back response and office staff friendliness(not quite so high).
The other LLMD's in my area: the closest one to me in NC had extremely mixed results, and it matched my local feedback regarding him. People had written that they wasted their money and they couldn't stand him, and others that he seemed very caring and that they revered him as a great doc. I had heard of this doc by reputation years ago before Lyme, and this "love or hate him" response from actual patients was the same.
I rejected from rating feedback the LLMD ILADS provided in Raleigh because the ratings were poor on the doc from almost all raters. No other knowledge on him.
The rating system may not be perfect, and Poppy has a good point that LLMDs are vulnerable to wrong bashing just for being LLMDs, but in my case the rating services definitely helped me.
Posts: 254 | From North Carolina | Registered: Nov 2013
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posted
One thing I've found, from my experience with this one doc (and may be true of others):
Back in the day when I took everything as gospel and didn't ask her questions she seemed very caring and responsive. I was being a "good girl".
This time around I've been more and more skeptical and have asked a lot more questions. I'm very polite, but I haven't fawned over her like I did ten years ago. She's been much more brusque/jerky with me - I haven't asked her the questions in a challenging manner, but I've had a lot (explain this to me, etc.).
Posts: 89 | From Mid-Atlantic State | Registered: Jan 2014
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I got the same impression. She was practically giddy when I agreed to the first bag of supplements, at my first visit. She was running around throwing stuff into the bag. Some of it she gave me directions for but there were a lot things she never even mentioned.
There were things I am not supposed to take because they have sulfur, herbs I know don't work for me, and tinctures for something I don't even have. I still have bottles and bottles of stuff. I can't get it all down and she wanted to sell me more!
She is dictatorial. WHen I returned the $1600 of supplements, she was angry. I was told I was not following her protocol.
Seriously, she could not give me one test. The labs refused everything. I couldn't stay with her even if I wanted to.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Neff.... Agree that she should have a 'rating' online. She's not the normal LLMD out there that we need to worry about. People need to be warned on what her 'protocol' is.
What I wanted to make you aware of.... check into your local hospitals. What we have up here in the rural hospital I work with, is a discounted CBC blood testing done for the public. No dr. orders needed.
We call it the "birthday special". The community can come in and pay $65.00 for a whole CBC with thyroid TSH. Smaller Montana hospitals would have this too. You could at least see some numbers of things! Amylase and Lypase are separate though, and they do check for liver things. Not sure if you'd need a dr. rx for those.
Worth looking into! Hope you find a hospital lab that does this.
And, good grief... we need to find you someone in Idaho, Colorado, Wym.... somewhere closer and that would treat you. Wish Dr. F would have been good to you, as I love him dearly..... oh well..... There will be an answer.... we'll all believe!
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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posted
As far as I'm concerned I did not have lyme disease at all and I sought out one of these "lyme disease doctors" after I was refered to another private doctor who gave me the "fake" igenX test for lyme disease and said I had it.
I sought out "lyme disease doctor" to get a second opinion, probably a bad idea because now I was given tons more antibiotics.
I received Bactrim, which caused red blood spots to bleed over my body. Small, but they don't go away.
I was given 3 other antibiotics, all at the same time. About 3 weeks into this or a month I developed paresthesias all over my body that felt like rain drops, burning, etc.
This actually made me think I had lyme disease because the doctor said it was the infection. However, I now believe it was an adverse reaction to the Bactrim or other antibiotics, just like the spots, which he said was the infection too.....
I fell for it. Do not wish for antibiotics and these doctors to treat you. These things have side effects. They can be toxic to the ears or other organs. Some IV types could make you lose your gallbladder.
You really need to be sure you have a lyme disease infection and I'd stay away from Bactrim and other weird antibiotics. Look up side effects for anything they want you to take.
Remember these lyme disease doctors are prescribing the antibiotics longer than most pharmacists will normally be used to so you are more likely to get side effects eg. Bactrim. A 1 week course of something is much less likely to cause side effects than 2,3,4 weeks or months.
I suggest if you are having muscle problems like I was then look into trigger points. That was my symptom. I fell for the lyme disease thing, or thought better to be safe and try treatment and if I get better great, if not I'll go back to physical therapy.
The test is what threw me off. Don't use that IgenX test.
There may be a new test coming out which is reputable and good, the nano-trap antigen test. I'd consider people use that, but this lyme disease stuff is ridiculous. I'm sure they are treating people who don't have it.
Four years later and i still have the paresthesias and the doctors can't figure out what they are. I wish I never took the antibiotics because that only complicates things in my mind.
Having money, being smart, having an internet connection and living in an industrial country can actually expose you to a lot of things you wouldn't have access to that can be dangerous. You have to use your resources and ingenuity very carefully.
Posts: 136 | From arlington, VA | Registered: Jun 2010
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lymeboy
Unregistered
posted
applewine, are you suggesting that Lyme is an overblown issue, being exacerbated by Charlatan Doctors and hysterical patients? I just do not know what to make of your post, but if you are here to discredit sufferers of Chronic Lyme, you are definitely in the wrong spot. There's plenty of places online where you can go to comment on the "ridiculousness" of "this Lyme disease stuff" and be in good company, but here all you're doing is creating confusion and insulting EVERYONE here.
Are there Charlatan docs? Absolutley. Which makes suffering with Lyme so much worse. Are patients hysterical? I was for a good while, because my brain was being eaten alive by Lyme and I had docs calling me crazy because I didnt respond to 4 weeks of ABX. So yea, we tend to be a bit edgy. Does Chronic Lyme exist? Yes without a doubt. If you think you do not have Lyme, then by all means, pursue treatment elsewhere. But comments like yours are not helping. Unless I read it wrong, it is a bit confusing.
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Lymeboy-No you read it right.
You make some excellent points. That was my initial interpretation also.
Applewine-I am sorry you feel the Igenex test is a fake one.
But on the igenex website, there is the certification standards. If you believe it is a fake test, that is your prerogative, but you are badly misinformed, and I pray for those who may have lyme, and listen to your 'fake' test hypothesis. You could be inadvertently harming them.
However you make some excellent points also, and I don't want you to feel like I am ganging up on you.
Totally agree that those of us who choose to treat our lyme and coinfections with antibiotics, are at a greater risk than the average Joe, because we take them for longer periods and at higher doses.
I like that you reminded us all to read the side effects of all the medications we take, to be aware of risks.
Also, pettechiae are a red-flag symptom of a common co-infection called Babesia, which Septra/Bactim is often prescribed for. I can see how any doctor well versed in coinfections would see the connection and interpret it as a herx.
It sounds like you had flagyl, as another of your abx. I am sorry you got the neuropathic side effects from it.
My doc won't prescribe Flagyl because of the higher risk of side effects over Tinidazole.
I am looking forward to the Nano Test also! Can't wait!
Are you going to try the Nano test when it come out? What if it shows positive? How will you treat your lyme?
I am going to try the nano test for fun. Also there is one in Germany called an Elispot, I want to try when I feel I am done treating.
Anyways, you will piss a lot of sick people off with your comments, but I respect your differing opinion. The only thing I disagree with in the bashing of the Igenex test.
But if we all agreed, life would be bloody boring Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lymeboy
Unregistered
posted
Neff, I took Cipro, Levaquin and Avelox each for a very long stretch. The Cipro was very helpful. After about 2 months, I felt like the Bart was gone. But about 6 months in, anxiety and other Bart nonsense started to creep back in. Levaquin was helpful as well. But Same thing, about 8 months in, it seemed to not be working. How did I not get rid of it in over a year of constant quin. drugs? I also took Bactrim, which hits Babesia and Bart, simultaneously with the quin's. Eventually, I moved on to Avelox, which was REALLY HEAVY MAN! Seriously, this drug was strong for me. I had all new herxes, and a lot of flushing in the neck and head. Lots of headaches. But after 6 months, it seemed to really bring the Bart down and it never amped back up to where it was. I've been getting by with A-Bart, and I've only been taking that for 6 weeks or so. I've been off all ABX since October.
For these drugs, I took magnesium Glycenate for 2 weeks in advance. Then as I was taking the drugs, I took the mag as far away from the drugs as I could. I usualy loaded up after dinner or later at night. Coordinating all the supps with the drugs is the toughest part for me. I think the magnesium is key.
Just wanted to share my experiences, since I took quins for a very long time and was not destroyed by them. They work well for Bart, but it seems Bart gets tolerant after a while, so you might consider switching up every few months. Cipro doesn't seem to do the job alone, Levaquin either. I've spoken to a few people on here that have had identical experiences with Cipro/Lev. Works for a while but then stops working. However, I do have a high drug tolerance, and was able to take just about anything, aside from Rifampin, which is just a nightmare drug. Obviously be careful, and let us know how it turns out for you, Bart is really a nightmare. The absolute worst.
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posted
I always tell the doctor I have to check to see what I have at home before I buy anymore supplements. That way I can review the list, think about it and, usually, get a better price on anything I want. If a doctor doesn't want to work with you on that basis, then their intentions and conflict of interest are obvious.
As much as possible, I ask beforehand what will likely be done and tell them I want to check with my insurance so I can budget accordingly.
If someone does not want to give me the details of the proposed treatment plan, then I don't know what I am buying and am not interested in purchasing more snake oil.
I always check the forums on various doctors and treatments. Most of the time, I find we are all in the same boat. Nobody has all the answers and we are all waiting on improvements in technology and further research (including the doctors who are happy to waste your time and money while we wait).
Posts: 47 | From nj | Registered: May 2004
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