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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