posted
I saw the doc for a followup and this time took my husband with me. I had been on minocycline for two months. Keep in mind I drove 360 miles one way to see this man.
In the doctor's defense, I have not gone very well prepared either time I have seen him. I did not have a list of my symptoms already written out before I saw him. But, these days, I'm never prepared for anything. I still am working, albeit from a computer in my home, so anything and everything else gets put on the back burner and I get to them if and when I can ever muster up enough energy to do so.
Anyway, the doc proceeds to question me and tells me he only wants yes or no answers to his questions, and at that point I was made to feel very uncomfortable with saying much more as was my husband. However, I did want to know what his explanation was for putting me on a low-dose of minocycline (100 mg once daily). I like to try to understand the rationale behind the treatment, so I was sure he must have a good reason for putting me on this dose and wanted to hear what it was. I must have offended him because his answer to that was, "who told you it was a low-dose?" I just kind of stuttered and stammered and then told him that I had only seen it prescribed at twice daily dosing and a person can look it up online as well to see what the usual dosage is for an adult. I was not questioning his ability as a doctor, I just wanted to know what his reasoning was behind choosing that for me.... that's all.
Anyway, after that, my husband dared to open his mouth and ask if he ever uses IV antibiotic therapy with his patients... to which he replied that only novices still use IV antibiotics with their patients and that he was an expert and in his expert opinion IV antibiotics should not be used anymore. This really did not set well with me at all.
Both times I have been in to see the doctor, my resting heart rate has been a little over 100 and it runs like this much of the time. Well, I am on Adderall, which I am well aware that it can speed up your heart rate, but I really did not think this was the case. I told him the Adderall is the only thing that is keeping me going at this point and makes me not appear as much like I'm ready for a pine box. He wanted me to take a vacation off of it, and I only wanted to do so if there was an alternative to the Adderall.
My heart rate has been something that has fluctuated up and down for years, which I told him. But, what I did forget to tell him was that years before I started on Adderall, I had noticed my heart rate was running at a higher than normal rate a lot of the time. I worked in a cardiovascular lab at the time I had discovered it. The cardiovascular techs got a new toy, a pulse oximeter, and they were going around checking everyone's oxygen saturation rate and pulse and that was when it was first brought to my attention, waaayyy before I ever went on Adderall.
Like I said, I did forget to tell him that, so he told me that until I take a vacation off of it, several weeks, he will consider my tachycardia to be Adderall driven. Okay, no big deal. He can think that if he wants to.
The doc told me he wanted me to stay on the once daily dose of 100 mg minocycline for another four months and then come back to see him again. Also, he told me that this is all he has to offer me and this is the way to treat Lyme. I dunno, but I am really inclined at this point to go ahead and seek another doc that may understand and be a little more forgiving of my not-so-togetherness and might have a little more to offer in the way of treatment than this guy. I have had no more testing other than the Western Blot he obtained the first time I saw him which only showed the presence of the IgG p41 band. He did not offer to check for co-infections even though I told him that last year when being tested for strep at a walk-in-clinic, I was found to be negative for strep, but tested positive for Mycoplasma pneumoniae in my throat from a PCR swab. I didn't have a sore throat, but I always feel like my throat is swollen and have a hard time swallowing.
It's this kind of stuff that kept me from seeking treatment in the first place.
What do you think? Time to move on?
Posts: 39 | From Alabama | Registered: Jul 2010
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posted
Yes, it was here that I found him. I was quite shocked on the second visit as I totally didn't expect this from him based on the first visit I had with him. He might have just been having a bad day, but I can't afford the 720 miles I had to drive round-trip for him to have a "bad day". I felt like crying all over again after seeing him.
Posts: 39 | From Alabama | Registered: Jul 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
It sounds like you might be in better hands elsewhere. You have to advocate for your own health. I disagree about his IV statements. You might want to seek out an ILADS doctor. You could put in a post in the doctor request section. I hope you find answers and get well!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
OMG Turtle! find another LLMD. He sounds horrid, egotistical...not unlike an IDSA doctor.
Bad day or not, it is appalling from what you told us.
I hope you find an ILADS doctor soon.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Wow, find the best LLMD (ILADS educated for sure) that you can afford ASAP!! This is horrible and wrong beyond belief. He is dangerous to your health---both physically and emotionally.
And give Metallic Blue and/or the other people here who keep the lists your feedback on this guy, so no one else has to suffer the same horrible fate.
Waste no time finding someone else! If I were you, I'd consider doing a charge-back on the credit card charge for his visit, if you charged it. I don't know if that's the right move or not, but it seems like it to me!
Posts: 3792 | From around | Registered: Mar 2008
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Quote: "...only novices still use IV antibiotics with their patients and that he was an expert and in his expert opinion IV antibiotics should not be used anymore." ------------------------ Was he SERIOUS? Yup... I'd run the other direction.
BTW, minocycline is rarely used as a 'monotherapy' to treat Lyme. LLMDs usually Rx doxycycline or tetracycline... for a few months anyway, esp. when we have lower sun angles (like now).
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Always remember that you are hiring this person to work for you. You are the boss. I'm sorry you had to go through this. Don't let a medical "professional" intimidate you.
Lyme & co-infections are very difficult. It really is hard to find someone to help. Still, you are paying for the services of a "professional".
If he doesn't work for you - find someone else. Don't take it personally. Sometimes, it's good to get angry. It's not your fault.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I have not heard of minocycline curing lyme alone
The marshall protocol people use minocycline amongst other things.
Minocycline is supposed to help with cpn as far as I remember, and some other things.
I think I remember mary Shomon (thyroid guide) wrote she was on long-term antibiotics, probably mino, for something.
Some doctors use it for rheumatism and stuff.
Most of them use low dose mino long-term I think I remember.
But not LLMD's I think. If they would, they could explain it to you.
Posts: 366 | From Europe | Registered: Nov 2008
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lymeboy
Unregistered
posted
Jeez, sounds like a real jerk....sorry you had to deal with that. You'll find plenty of people here who have had similar experiences, including me. But MAN, what a class -A- jerk!
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posted
Wow... My favorite word of advice now is to NEVER ignore your own instinct. Had I found the proper help when I thought things were wrong earlier in my life, I'd probably be living my dream life right now.
Minocycline is included in my protocol, but amongst MANY other othings.
I do hope you find someone else soon, I know how frustrating it can be finding the right help; especially if you were driving 360 miles to see this guy :{
Posts: 829 | From MD | Registered: Dec 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I use this doc and in his defense, I have not encountered this type behavior. He says he is an expert because he is. I know a good many ppl that are completely cured from his treatment and thats why I have stuck with him for 2 and 1/2 years.
I didn't start out on low dose therapy as you did, but have been on low dose doxy for about a year and a half now with great results. The more aggressive treatment he started me out on did not effect me as has this low dose treatment. I personally don't think you have to load your body up with huge doses to get well.
I don't blame you for being upset though, especially after driving so far and it being only your second appt. I actually can hear him saying "who told you it was a low dose". He knows good and well where you got that info. Right here on lymenet.
But like I said, I don't think large doses are neccessary. I have made big improvements on low dose therapy after doing more aggressive treatment prior. I feel that aggressive treatment might be old fashion. This doc is a researcher so he doesn't do what he hasn't seen work. He would never waste his or your time doing something that didn't work. I have gone to him long enough to know that about him.
Anyway, we all have to discern who we feel comfortable with. If you are not comfortable with this doc, you should find another. I think being comfortable with you physician is an important part of recovery.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Thanks for the notes. If I was treated the way you were, I would not return. I understand that other patients have had good experiences, but your experience was "YOURS" and it wasn't good, therefore I'd trust in yourself.
-- 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.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
geez, gal, even that infec doc i saw gave me 1000 per day of biaxin.
that seems awfully low. and who says nobody uses iv's.
i don't know. anymore i'm not tolerating any doctor who treats me like i'm some sort of subspecies. and no more of these "she just wants attention" remarks either.
i'd say see if you can find somebody closer and someone that you like.
i'm still grieving over loosing dr w.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Someone else had a very similar experience that you did. You're welcome to read the patient reports that I keep.
-------------------- 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
Nope... didn't get it on Lymenet. I am a medical transcriptionist and type all kinds of reports for docs, so I hear what they normally prescribe for their patients. Yes, there is different dosing for different illnesses, but by far twice a day dosing is used much more than once daily at 100 mg for most anything I have seen (besides Lyme). Also, there is a thing out there called the big wide world on the internet with tons of information available. I know I am no expert, but it doesn't take a genius to know how to retrieve information that is readily available. I do, however, need and appreciate others that are there to help me sift through what I do find. And, I know no two cases are alike.
Yes, I will be finding another. I will not drive another 720 miles to have a doctor come into the room and tell me to give him only yes or no answers.
As far as the "expert" statement he made, I don't mind him making that kind of a statement, but it said a lot to me when he went on to say that anyone who still uses IV antibiotics is a novice. He came across as just a little too full of himself at that point. I am truly glad you have found someone that fits with you. You are right, that is very important.
Yes, each to his own, but I ain't a staying on that train!
Posts: 39 | From Alabama | Registered: Jul 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I really hate that this didn't work out for you! And I understand how this doc can come across; but I sort of like that he is full of himself. I see it as him having plenty of self confidence, which I find neccessary in order to treat illnesses that are complicated such as LD.
I do think some of his patients have left due to the way he sometimes comes across. I understand wanting someone with a great bed side manner, but to me expertise on LD is more important. And I know that this man has it.
I'm sorry that it didn't work out for you. I hope you can find someone, as we just don't have hardly any LLMDs in the southeast. You will probably have to travel further unfortunately to find another LLMD; but hopefully you will find someone that is a better fit for you.
Good luck Turtle! I wish you the best!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Thank you, sutherngrl. I appreciate your sentiments.
Yes, I need to find someone who does not come across as being THE expert. AN expert is all I want. I need to feel that the person who is treating me is still open to there being other possibilities and that some other self-proclaimed genius might just know something he doesn't. I know, I know...he's not self-proclaimed. Plenty of people will give him that. But I was/am not ready to yet.
The only way a physician is allowed to be devoid of bedside manners in my book is if he has performed a miracle for me or at least gives me some semblance of hope or reassurance of getting me to a place where I can tolerate or perhaps even enjoy everyday life once again.
Posts: 39 | From Alabama | Registered: Jul 2010
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Hey I sent you a PM!
I've had a HORRIBLE experience with a "LLMD", this one actually sounds like he is a LLMD the one I saw followed Dr. Steere's and the IDSA's guidelines and told me I had post Lyme syndrome.
I also got him from here. These lists are only there for information, it means some patient somewhere suggested the doctor. I'm working (as well as Mike and Sicilano) to find new LLMDs and go through the current lists to make sure these doctors ARE good LLMDs.
So in the defense of the lists here, some doctors are recommended by patients. The people with the lists do not have any way to tell how good a doctor is. We cannot possibly call ALL the offices and ask a ton of questions, that would take a ton of hours.
Once my school ends I am going to start calling docs from the list and asking questions and adding notes to the list (which I will send to the appropriate people). But I just don't want the list badmouthed because some have worked very hard to get these lists together and keep them up to date!!
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I don't think it's possible to badmouth the "good" lists. The good lists provide overwhelming information that allow the patient to get a lot of negative and positive reports, as well as the physician's history, specialty, costs, languages, insurance acceptance, whether they are Lyme Friendly and can "support" a Lyme specialists agenda, or a provider that directly treats and specializes in Lyme Disease, with antibiotics and or other therapies. Whether they see children, how long they've been in practice, what quotes they've made in newspapers or the media, if they have a website, e-mail address, as well as phone consults, e-mail consults, and whether they profit from selling supplements or not, etc.
The good lists are exceedingly thorough and people vet most patient reports as carefully as possible. Another critical thing that the good lists have is "raw" reports. If the patient is ****ed and says the doctor is an awful human being because he said X-Y-Z to him/her, then that's exactly what we put onto the list. We may ask other questions, such as "What else would you like other patients to know about your experience. Try to consider what you'd tell a new patient thinking of going to see this doctor for the first time. What should they be prepared for?"
Most patients will be thoughtful, but they are also encouraged to be blunt, open and honest with their feelings. A good list holder won't try to sugarcoat or edit the patients report or hold any bias towards any provider.
Those with the "good" lists" inform patients to attempt to contact, especially by e-mail, any physician or health provider they are thinking of seeing.
It's still no guarantee, no matter how much research you do, that the experience will work out -- just like in my case. I think Dr. H is a bully and ...well, irritable, and generally unpleasant to work with. Almost everyone else loved him. I traveled 5hr round trip, so I know the feeling, and I still do it because my girlfriend still sees him. I wrote my report for Dr. H, and today I still accept gleaming happy reports about him, and I post them exactly as I receive them.
-------------------- 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.
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
That kind of thing happens and it is good that you recognize your discomfort with him and move on to someone else. Hopefully your next experience will be better. I have been to two LLMDs and one LLND that I am not going to return to.
They weren't all bad either, just not good enough, because they were stuck in their opinions and really not that invested in me as their patient.
-------------------- 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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quote:Originally posted by littlebit27: So in the defense of the lists here...
Whoa... wait a minute. I definitely do not think the lists need any defending. This resource and the work you guys do is much appreciated. I have no problem with the way they are being handled. It is my job to take the information provided and make use of it the best I can. Sometimes I overlook things, not intentionally, but it happens nevertheless.
Thank you very much for the service and support you provide! Posts: 39 | From Alabama | Registered: Jul 2010
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posted
Turtle -- With an elevated heartrate and feeling like your throat is swollen you probably need to have your thyroid function evaluated. Many infections can affect thyroid function.
And yes, I would say it is time to move on to find a doc who is a better fit.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
This doctor used to use IV protocols! I know because I went to him for years and was on IV treatment for 12 plus months (not concurrent) during that time. I loved this man and credited him, along with my wonderfully supportive family, for saving my life.
I got better, went back to work in 2005 and quit seeing him. (It is a long journey for me also.) Life was good for quite awhile.
Unfortunately, by winter of 2009 I relapsed and I went to see him again.
Wow! What a difference. He was not the same. He was not the "HOUSE" type of doctor that I once knew. It seemed that something had happened. He was way more arrogant, and way more cautious in his approach. I wondered if the medical board or a lawsuit had changed him. He seemed so cautious!
He insisted that I had to have been reinfected, because I was cured before. I too was treated only with the mino. He wouldn"t address my pain issues. He did however, put me on a psych med. I went for only a few visits and quit.
I would love to go to someone else. But as Sutherngrl said there are hardly any LLMDS in our area.
I continued to decline and am now not working.
As to Turtle's question....yes I would call it quits with this doctor. So sad because he was once wonderful...
Posts: 101 | From MS | Registered: Feb 2001
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posted
Lymetoo - yes I could travel, although money is an issue now that I am not working. Do you have any ideas?
Posts: 101 | From MS | Registered: Feb 2001
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posted
Missy, sorry to hear you also had this happen to you. It was a definite Jekyll and Hyde experience for me as well. First visit wonderful... second visit, not so. Perhaps it is time for this doc to think about retiring?
Posts: 39 | From Alabama | Registered: Jul 2010
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posted
let me say this...every 'body is different' and the bug is behaving differently in each 'body' so one thing doesn't work for another.
this is why it's difficult to say "i'm on this you should be too etc. unless we are talking about detox or supplements"
I will agree that single anti-bx tx is ineffective. as far as dosing goes, you have to weigh in tolerance/herx and most would opt for higher dose w/5 day week course vs lower dose. I would, I can handle a lot of sick to get well.
as difficult as it is, with the brain issues = P you have to arm yourself with info; this website, CALD, townsendletter.com july10 published great research samento & banderol. When you call infections disease or ND/MD or internal MD ask the receptionist if they see "chronic lyme" patients. if they act like you're crazy forget it. honestly, I"m in southern CT and patients here are having trouble getting the right kind of help. you have to be pushy and educate yourself. as sick as you feel you have learn and work to open the md's eyes to the bigger picture. Print out articles, take to MD, make them listen! YOU ARE THEIR CUSTOMER! even the good ID docs are too busy to cover the 'whole' patient with nutritionals, thyroid, etc.... maybe the local support group can help but....when I was tooo sick I was tooo sick to go there.
Posts: 40 | From CT | Registered: Dec 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I think there are 2 reasons for the change in this doc. One being what Missy said about the state health board, and two being that he discovered that he can cure lyme without IV's or huge doses of antibiotics.
I hope he stays on the list because he has helped me and supported me greatly; and I know several others that have had this same experience with him. He also constantly researches many illnesses(not just lyme), and goes to medical symposiums and is always learning.
Just because someone has an unpleasant experience with a doctor, doesn't mean everyone that sees them will. Sometimes its more about personalities than about what the doctor knows.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I never remove doctors from my lists. I vet them carefully before I put them there. He's staying on mine.
-------------------- 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
METALLIC BLUE - Could I get a copy of your list? I need to find another LLMD. Also, I certainly am not advocating that this LLMD be taken off your list.
Having said that, it would be helpful to prospective patients to understand going in that he now takes a very, very conservative approach these days.
Sutherngrl - I am glad that you are doing well with your treatment! And if you are still having support group meetings, I would love to participate.
And there is no disputing that this man is exceptionally intelligent and well informed. As I said in my post above, I credit him with saving my life during my first go round with late stage neuro-lyme. We thought of him and his nurse like part of our family.
My views only changed when I returned to see him several years later. His whole approach was different. My family and I went in with the same open minded attitude and deference towards him. So if personality differences were the problem, it was on his part.
Believe me, I wish it could have turned out better. Unfortunately for me...and my poor family..I am virtually disabled now.
I am having a difficult time expressing myself today...so please you all, do not take offense at anything I've said.
My brain lately has "turned to mush"... Ironically, that is an expression that this doctor used and warned about when he put me on aggressive treatment (IV) in 2002.
Sorry for rambling. I am just frustrated that I am so sick again. It has been a rough few weeks. I turned 55 last month and have been wondering how my wonderful, active, fulfilling life has come to this!!!
Posts: 101 | From MS | Registered: Feb 2001
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I have to admit that I had the same reaction to MB's statement. While we surely don't want to harm any doctor's reputation with unfounded, unreasonable, personal attacks...it seems a referral list should be subject to updates based on current information. That way potential patients can truly make an informed decision.
But, that is just me. I am a nobody on this board, so I don't want to step on anyone's toes. Posts: 101 | From MS | Registered: Feb 2001
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posted
Missy, there is no way you are a nobody on this board or anywhere else!
I am hoping that MB and other list keepers made note of your experience as I think this is an invaluable tool for us all if kept up and I, for one, greatly appreciate their toil and efforts.
I definitely don't think this doc is any way "less intelligent" than most any other doc, it was just that he wasn't doing anything for me, didn't respond to me in a way that I was comfortable with and vice versa as far as me to him.
I also understand that there are those that have no problem with whatever the doc says or does and feel totally comfortable and trusting in his ability and the manner in which he relates to them and chooses to treat them.
This was just my take on the limited experience I had with this doc, which happened to be, as has been pointed out, "my experience" and definitely not a good one in my mind or in my husband's for that matter (he was with me the second time).
We are all unique individuals... and missy, you are definitely a SOMEBODY! Posts: 39 | From Alabama | Registered: Jul 2010
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posted
Thanks Turtle....It's just that even though I have been around here for quite awhile, I rarely post. There are so many prolific posters, one gets a bit intimidated, I guess.
So again, thanks...I needed that!! Posts: 101 | From MS | Registered: Feb 2001
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quote:Originally posted by missy: There are so many prolific posters, one gets a bit intimidated, I guess.
Amen to that sistah! I'm right there with ya. But..., even if we are less "prolific", that doesn't make us any less special Posts: 39 | From Alabama | Registered: Jul 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I had to look prolific up. LOL
Prolific = Producing many works.
You don't have to be prolific to be somebody. I believe everyone adds value. This forum is a mish-mash of people who are doing everything they can to get well.
Your experience matters too. The list I have from Siciliano had some reviews included with the doctor's names... not sure if MB does the same thing. It is useful to know other experiences when choosing a doctor.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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