nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I traveled a long distance to see this LLMD because I thought he was supposed to be very good. He was highly recommended by several people.
Here are my concerns;
I received no instructions ( that my husband or I remember) to get liver tests done. I have been taking Mepron over 6 weeks and I just realized I need to call my family doctor to get the liver test. Should the LLMD have given me a script for it? Is it unusual that he does not want to check up on it?
I tested positive for three infections but negative for bart. He says I don't have bart. I was treating bart for two years. Levaquin, which is specific to bart, dramatically reduced my symptoms ( I had to discontinue it because of tendonitis). He says the symptoms I thought were bart are erhlichia.
He says none of the infections cause dry irritated eyes. Many of us have posted about having this problem.
He gave me a quick exam - eyes, throat and behind the ears for swollen glands. I never got out of my street clothes. As far as I traveled it is shocking that he did not check or look for anything else.
He said he does not believe in supplements because they are unregulated by the FDA so you do not know exactly what is in them. They are not necessary and a waste of money.
He is only treating one of my infections - babesia. I could have prescribed this myself. Mepron and zithro. He did not tell me to take it with food and absolutely did not recommend taking it with fat. I have no idea what his plan is or my prognosis.
I have had no response about the additional thousand dollars worth of tests results. I guess I will have to have my GP contact him for results.
My visit to him cost a lot because I had to travel by air and stay in a hotel in a big city. The travel was so exhausting with lay overs and long delays, that I took a nose dive directly afterwards.
I would like to stay with one doctor but I am worried that this one does not give a hoot about me.
-------------------- 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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Hambone
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Wow. If that were me and I was treated like that, I would not go back.
That was totally disrepectful what he said about your husband. That comment alone would cause me to drop him like a hot potato.
Posts: 1142 | From South | Registered: Dec 2010
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I would be discouraged, yes, but I have not been completely satisfied with ANY doctor EVER. I have always put together my own health care using doctors for what I need from them.
Dr. B's guidelines are pretty complete as far as suggesting supplements, exercise, etc. So you have them to go by, plus recommendations here.
Have you treated for intestinal infections like parasites and bacterial overgrowth? I know Cipro treats bacterial overgrowth of the intestines. I felt GREAT on Cipro. I had a terribly imbalanced gut, and most of the treatments I did can be done on your own. Perhaps the Levaquin worked so well because of what it did for your gut (not to say you didn't have bartonella, too)??
I think that all of us have learned so much about our bodies (I know nurses are always shocked at how in touch with my body I am and how well I know what I need), that no one doctor can ever know as much as we do about ourselves.
My LLMD was the one to check my liver but I did not have a local GP for support. I mean, I had one, but she was worthless in regards to Lyme and my LLMD knew it so he did the testing. My LLMD also didn't mind that I always had someone with me for my appts.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Who is your LLMD Neffer?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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He is someone to be avoided; clearly not a top-quality ILADS-active LLMD!
Dear nefferdun, I sent you a PM.
Note to all readers: Anyone with positive or negative feedback on LLMDs or other physicians seen for LD or tick-borne infections and related symptoms, please provide feedback to LN member METALL1C BLUE, and other member(s) who gave you the contact, and use internet physician rating sites to help each other out. Thanks! Smile
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I am so sorry to hear about your disappointing visit. I know we gather all our strength to ask for help. It takes a huge amount of energy to get out the door and place our broken and vulnerable selves before a stranger.
We hope, believe and trust that we will be cared for in a personal and compassionate way. After all, isn�t that part of what we were paying top dollar for?
It is hard to be let down. I am sorry you didn�t get the interaction, dialog and reassurance you were looking for.
Take what you can get from the visit. Request, demand if need be, copies of all your tests and the doctors notes. I would also request a follow up phone consultation to get the questions answered that you still have and to ask his/her rationale for the prescribed treatments.
Always, always write down a list of your current symptoms and a list of your questions and place a copy on the table before the doctor comes in. Don�t leave until you are satisfied. You are a paying customer.
If you don�t understand the treatment plans or are not satisfied with the visit you need to state it before you leave. Yes, it is a lot for us to muster, but it is our treatment and it needs to be understood and agreed to.
Ultimately, it would be best to find a practitioner that you are comfortable with. It sounds like you need a practitioner who will take the time to answer your questions, be open with your test results and include you, and your husband, in an open discussion.
I can�t count the number of doctors I have been to over the last 20 some years.
Ironically, the doctor I first went to in 1989 (and presented my research on Lyme) dismissed me at the time. He is now a LLMD, and I am currently seeing a doctor who has come to study under him. They too are human and are on their own paths.
I encourage you to tell, or write and send, your feedback about the visit to that doctor. It can be cathartic for you and it can also serve to educate them about bedside manner, compassion and respect.
Don�t give up. This is your one life and it is worth fighting for, going to the edge of the world for if need be.
Posts: 31 | From Wisconsin | Registered: Aug 2010
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posted
I agree with Six -- you will probably never find a doc that covers all the bases. Many of them are strictly antibiotics and you will be on your own with supplements and herbs.
Docs who leave the spouse out are not ok in my book. Hubby went to a G.I. doc once who would not even let me sit in on the appointment. Needless to say the appointment was totally useless.
Hubby could probably handle an appointment on his own, but even at his last appointment he told me later that he had been thiniking and thinking and could not remember the name of one med he had taken in the past and was glad I could give that info to the doc.
As for the exam -- many LLMD's don't do much of a physical exam. Most include blood pressure, temp and weight. To some extent it depends on how large a nursing staff they have.
As far as deciding which symptom goes with which infection -- it is an educated guess for the doc the same as the patient.
If you are getting better with the docs treatment then keep going back if you can live with their attitude. The reality is that just one appointment is not really enough info to know the docs skill level. You should have a pretty good idea of their personality, but even so anyone can have an off day.
There are many questions that don't always get answered regarding long distance docs. These often do not come up until you run into problems and it is too late to avoid the issue. For example, will the doc write refills or new scrips based on phone consults or if you have problems in between appointments? Or will they only write new scrips if they see you in person?
And then there are issues like hubby just ran into that we didn't know in advance -- obviously the scheduling staff messed up. The new doc we went to see will not take hubby as a patient because he lives more than 2 1/2 hours from the practice. But he did make recommendations for his PCP.
The more you deal with docs you will find that every one of them has their favorite list of meds. If those work for you then fine. But if you don't respond to the "normal" meds the doc prescribes then many of them will not know what to do and you can waste a lot of time -- the doc will either be slow in changing meds or change so many things at once that you can't figure out if anything is working or not.
As they say "hindsight is 20/20 vision."
Only you know whether the doc is a good fit -- I would trust my intuition whatever that is telling you.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Actually he is a top notch ILADS doctor which is what confuses me. I feel half crazy and am certainly mentally impaired so I tell myself there must be some kind of misunderstanding or he is right about everything and I am wrong and stupid for thinking otherwise.
I was in such a bad mental state after that exhausting trip and then starting Mepron, that I spent many hours trying to figure out what the h&$% he was trying to say about my husband.
Finally I just exploded at my husband telling him there must be something wrong with him (my husband) that I was not catching because the LLMD did not like him. My poor husband is the only person that has been consistently there for me and here I am attacking him because of that remark.
It was about that time I posted about getting my anti-psychotic meds script filled (which I did not do).
Remember to Smile, your mailbox is full. I did not get your email. Please try again.
Six, I treated for parasites. I took a dose of ivermectrin just last week and not one worm.
-------------------- 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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I just emptied my box. So sorry!
Your PM box is full now, dear nefferdun.
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I agree with SGK. I don't think there is a perfect doctor and I just get what I can from them and look elsewhere for what they don't do.
FWIW, we have been to 6 LLMD's for two of us, including a very well respected pedi one. They did not order monthly blood tests. Even when my daughter was on Mepron.
Our current one does, but she is the first.
Not all of them believe in supplements either, at least for kids. One of them is well known for getting lots of people well.
None of them have provided test results until the next appointment, which sometimes wasn't for months.
As long as I had abx during that time, I was ok with it, since really the tests are not that meaningful in many ways.
I would be bothered by the husband comment, but I'm not sure I would change over that.
My concern would be if I thought Mepron/zith was not the correct choice and I didn't think he would listen to my input. I have switched doctors quite a bit to find one that has an approach I like for abx.
I have started going to doctors that are willing to do a monthly phone appointment just so I can get feedback more often.
Posts: 984 | From US | Registered: Dec 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
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I agree with SGK also. There are no perfect doctors. They are just human like the rest of us. And we are overly sensitive due to chronic illness, so maybe that is a part of it.
I would never change doctors over just one appt., especially a LLMD. They are too hard to find as it is.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
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All of your responses are very true.
I actually gave the doctor a typed outline of my illness taken from the diary I keep of my illness. It included the time and place I was bitten as well as type of tick (wood tick), diagnosis, symptoms, treatment and changes in symptoms followed by changes in treatment. Current symptoms clearly pointed to babesia. My questions were all presented in this to.
As I was thrown off guard by his comments I did not respond to them completely. I objected to him saying I did not have bartonella. I said there were 26 strains and the labs only test for two and I was diagnosed and treated for bart by another LLMD> He said "IGENEX has it down pretty well and they pick up on the other strains".
I objected to him saying I had sjogren's to explain my dry eyes because I do not have a dry mouth. I am told by the dentist that I have overactive salivary glands. He tested for it anyway.
I kind of think, like some of you, that I should give him another try but it is really expensive. Am I just wasting time and money with the wrong person?
Or maybe no one can help me. Am I to do this all on my own like I have been doing? I am looking for a doctor that I can trust and maybe he does not exist.
I do have a telephone consult and will follow through with it. That is next month. Then I am supposed to fly back in May.
-------------------- 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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Not all parasites are large. I had a terribly imbalanced gut that is taking years to fix. I did have the large parasites, but also bad bacteria, which is why the Cipro helped.
I still take an HCL supplement for gut support as parasites tend to grow where HCL is low.
This is the kind of stuff I had to figure out on my own.
Not ideal. Fortunately, Dr. K has written a lot as well as the ILADS doctors, so we can wade through a lot of it on our own.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I hope he was not "jealous" of your husband. Or maybe he was kidding?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I don't know why he said that. He didn't sound like he was making a joke but maybe he has a weird sense of humor. As my husband and I are in our late 50's and 60's, not to likely he was "jealous".
I could overlook the personality stuff if he was going to make me well. That is what is important - not the off the wall comments he makes.
I get worried about who to trust. So far I have not been able to trust anyone for good reasons. And I am a very gullible trusting person; not naturally suspicious, skeptical or overly critical.
Hopefully I am immune to one thing and that is worms. I have a lot of animals and have been mucking manure for decades so if anyone had them it would be me but there is no evidence of them. Thank 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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lymednva
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Member # 9098
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While there are no perfect doctors, just like there are no perfect people, that doesn't mean you need to put up with feeling this way about your doctor.
What works for one patient may not be right for another, so it's possible that this LLMD is not a good match for you.
One of the reasons I like my LLMD so much is his compassionate manner and the close relationship we have developed over the years.
I also respect his medical decisions and his constantly looking for more ways to help his patients.
After several negative experiences with doctors I fired a few and moved on to those who were more supportive several years ago, long before my Lyme diagnosis.
In my opinion you need a LLMD with whom you feel comfortable and one who shows respect for you.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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