Topic: LLMD yelled at me saying that I would be better if I listened to him!!!!!!!!!!
lymeHerx001
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posted
My LLMD yelled at me and its still bothering me.
He basically told me off because I corrected him on the dosage that we agreed on with starting the naltroxone.
He said that "thats why Im not better because I dont listen to him"
What a jerk! I did listen to him and thats why I pushed through my herxes and developed chronic MCS/vertigo a disability in itself!
He tried telling me that I had that before I started seing him. I told him yea but it wasnt chronic.
He told me Im trying to play doctor.
And people think the world of him. He forgets my case every time I see him.
He always has very little to say and then every once in a while he blows up!
Thanks alot for the guilt trip doc
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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A quick (very quick recap)
I basically cant handle my herxes, I feel better initially off SMALL doses of abx and then wham I get pale, sick, suicidal everything! I just lay in bed.
Is that better to you buddy?
Posts: 2905 | From New England | Registered: Sep 2004
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randibear
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whoa, you don't need the additional stress.
i had a doctor tell me one time to shut up. i never went back. i was trying to ask a question and he went off. i said something to the nurse and she told me he was having problems.
i told her "well he's got one less now."
i think i'd look for another doc. there's no excuse for bad behavior.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I never listen to my doctor as I am too busy running my mouth due to my past experiences with the doctors in network. Maybe he was just unloading on you. I know, no excuses, but I must drive my LLMD nuts...
-------------------- Dying is easy. Living is harder. Posts: 257 | From owensboro kentucky | Registered: Mar 2008
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Son's blog born at 24 weeks. Posts: 356 | From massachusetts | Registered: Jan 2009
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Geneal
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posted
Uh.....Even if there are only a handful of LLMD's,
And the ones we have we value greatly,
You still pay (dearly) for the service.
I don't know about you, but I don't pay to be yelled at.
I can get that for free.
I would have been personally and professionally insulted.
I probably would have cried.
I agree with the others that maybe you need to look
For another doctor. One who doesn't yell at you.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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sparkle7
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posted
I would get another doctor.... You hire him, not vise versa. He's supposed to be working for you.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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seekhelp
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posted
Sounds like a bye-bye situation to me. I don't put up with crap like that.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
your not alone, dont think that helps much though. last appt i had issue, is bad esp when your choices of another Dr are limited to non-existant....leaves you feeling rather stuck
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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heiwalove
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posted
you don't deserve that, LLMD or not. sounds like it's time to fire this particular doc.
posted
Almost ALL doctors have HUGE egos. Especially those who make people better. Sounds like he is suffering from the "I'm too great" syndrome because he told you you were trying to play doctor.
This kind of suffering with Lyme needs COMPASSSION.
Someone who understands SICKNESS and the pain of it. Doctors who are both making people well and who have compassion BOTH, are difficult to find.
I would really try not to take it personally if I were you. Just write it off as "he was having a bad day" and try not to make it about you. Easy for me to say. I know!
I went in yesterday on my quest to find ANY doctor who will take the right tests on me and, already crying before I got in there.....after NO JOKE, 30 seconds of me crying and telling the doctor I felt hopeless because I can't find the help I need and my husband trying to tell the doctor that I have been all over, I am REALLY sick, and that many tets are coming back normal but I had an abnormal EKG there was something wrong with me.
My husband explained to him I am having abnormal heart rhythms, I placed the EKG on his desk, which he ignored and that I was admitted to the hospital last well that I can't hardly walk and..NO JOKE..after 30 seconds of hearing my story he told me I had mental problems!!!!
I FLIPPED OUT!! I could not believe it!
I immediately got up and said thanks for your time. I do not need your help. This is over. And it was BEYOND BELIEF. I said the fact that you tell me that I have mental problems after talking to me for 30 seconds IS the problem...NOT ME and shows me you are NOT the doctor for me. And I stormed out the office. And of course, only made me feel MORE hopeless about my situation.
Point of the story...you have to decide WHO it is that will be YOUR doctor. And if they are REALLY qualified to TRULY help you, what is it that you will put up with? If someone could actually tell me what was wrong with me and give me a diagnosis, I would put up with his crappy attitude, if I knew he could really help me. Think about this. You are under his care already. Think it over.
Sorry to here your experience. I think we have all been there to some degree.
Is that link for real by the way? I hope you didn't plonk that down on the Doc's desk with your EKG dear oh dear!!
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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nefferdun
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posted
Everyone of us has to play doctor, not because we want to, but because we are extremely sick and have been misdiagnosed and given the wrong treatment over and over. We are playing doctor every time we come online to the medical questions forum seeking answers. I would trust a stranger online that has been through what I am experiencing and gotten better before I would trust a doctor that is shuffling me through his office so quickly he cannot remember who I am or anything about me. We all make mistakes, even doctors, and lymies. more than any other patients, are aware of what these mistakes have cost us. We need to be wary. Currently I have tendonitis so bad in one arm I cannot use it, because I was given levaquin and when I developed pain the LLMD told me it was a herx so I continued using it until something snapped. He should have taken the route of caution and told me to stop. If I had listened to the people online sharing their experience and telling me to stop, this would not have happened. You know that your doctor made a mistake but rather than accept responsibility he is transferring blame to you. I would dump him and find someone else. To add insult to injury all of us have paid our bills on the way out.l
-------------------- 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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kreynolds
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posted
iloveyou:
You are from Sweden??? A fellow Norwegian here...
Anyways... I would say get a new doc.
I have a really great doc but am on Workers Comp which makes it difficult.
Actually this past Thursday I had my appointment(with a new "Field Nurse") and everything was fine until she came barging in the room askin when I was going back to work.....
The doctor looked at her as if she had 10 heads. He stood up for me and thats what you need.
You need a doc you can confide in and be able to tell him/her how you are feeling about the whole situation.
There are doctors out there like that. You just gotta find them. Even some LLMD's I have to question just so I get a good explanation.
Good Luck to you and remember YOU are the one dealing with this crap and YOU can "nip it in the bud".
Best Wishes!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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lymeHerx001
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posted
exactctlly nverdun.
The LLMD should have had me stop the biaxin once I got the severe vertigo.
He thought I could handle it. Now Im sensitive to everything!!!!
Posts: 2905 | From New England | Registered: Sep 2004
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massman
Unregistered
posted
MCS is poor liver function.
herxes are often due to poor liver function.
Why not get the liver healthy b4 the drugs overload it ? Too simple ?
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lymeHerx001
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posted
liver enzymes test good
Posts: 2905 | From New England | Registered: Sep 2004
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Keebler
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posted
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Liver enzymes tests are not nearly enough to determine if the liver is working as well as needed. Not by a long shot.
Did you use liver support when taking the Biaxin? Did your LLMD suggest that?
lymeHerx001
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posted
welchol and thats it for liver support.
Coffee enemas did little to nothing.
NAC gives me a migrane.
Milk Thistle makes me suicidal!
Enough info?
Thanks for helping out Keebler. Your more help then the guy I just payed $200 to scream at me.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Trust becomes a huge issue with lyme. Most of us have been from doctor to doctor, have had big scares about other illnesses, endured upleasant/expensive treatments (not for lyme), been told it's in our head, and on and on.
By the time we get diagnosed, we're exhausted, mentally, physically and often finacially as well. And, maybe no one intends to do this, but I think we end up pretty abused...system-wise. Maybe MOST people going to doctors with mystery symptoms are having psychosomatic issues or whatever. But there's too much similarity in our experiences, symptom clusters and other to just be dismissed.
The LLMD who first diagnosed me....when I didn't respond pretty much immediately to treatment, or had a really tough reaction on Ceftin (really rough) started telling me he thought I was being dramatic. Yes, his words. I could barely stand up, and he said this. When I stayed sick or maybe herxing over 2 weeks, he said I should see a psychiatrist.
It's not that this hasn't affected me emotionally/mentally. It has. But I was SICK. Ill. I can separate out anxiety/depression from feeling so ill I can't eat or stand.
I lost trust in him. It was difficult. Because of all the docs I'd seen, he tested me for lyme and etc, and found what I hope is the answer....
but I don't want to see him anymore. There's a bit more to the story than what I wrote....but after all I've been through....I need to see someone I can trust.
Posts: 322 | From Venice, CA | Registered: Sep 2008
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randibear
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posted
there's nothing that hurts us more than having an additional burden of emotional feelings we don't need.
i hope you find someone you like. might advertise in the looking for doctor section and see if someone can help.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
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Okay, I know some forms of liver support may be hard for you - but there are many ways to achieve that.
Biaxin, Minocycline and Azithromycin, each can cause inner ear reactions. Bottom line is that unless liver support is used the ears can also get zapped from the excess toxins and stressed liver.
======
There may be way more here than you need, but it's a set I've been working on and I'm far too tired to sort through and figure out what might be helpful.
. . . Individual variations in our cytochrome P40 enzymes help to demystify why there are so many variations in how we respond to drugs and herbs. . . .
The important thing to remember is that the liver is a hot (metabolically active) organ, and so tends to get congested and inflamed.
. . .
Protection
Turmeric root, wheat sprouts, schisandra berries, amla fruit, beet root and milk thistle seed are among the major sources of protective anti-oxidants for the liver cells, as are fruits that contain flavonoids, especially citrus fruits.
These should be used to prevent development of inflammatory disease, or for damage protection as in the case of persons taking strong chemical drugs or undergoing chemotherapy.
Deficiency
The liver can become weakened and deficient. If this is not corrected, it can lead to liver atrophy and depletion of glycogen stores, even hepatitis. Signs include fatigue, low blood pressure, hypoglycemia, dry eyes, headache, heat symptoms and irritability . . . .
Heat and Inflammation
To remove excess liver inflammation with heat signs or toxins . . . .
. . .
Pain
If there is liver inflammation with signs of pain and tension, use herbs that calm the liver and move the blood . . . .
If milk thistle is not on your plan, NAC might be considered:
This, from a protocol for Chlamydia Pneumonia (Cpn) which is a similar chronic stealth infection. This treatment protocol is also similar to that of chronic lyme.
This is what one of the protocol authors says about the power of NAC to help protet the liver:
. . . "Surprisingly, the only anti-chlamydial agent that did not cause hepatitis in some patients was NAC. In fact, NAC is recognized as being protective.
See attached references.
My conclusion is that NAC should be the first agent in an anti-chlamydial regimen and should be a constant part of the therapy for this protective effect, not to mention it's effect against elementary bodies.
In addition to information Terry has posted there, she says:
There is a page on lymeinfo.net about methylation but it just covers the theory behind the simplified protocol and not really methylation cycle issues in general.
Keebler
Honored Contributor (25K+ posts)
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posted
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Also, I want to add that it seems the doctor is very concerned that you get the medicine you need to attack this horrible infection(s).
His yelling at you is mostly out of deep concern and knowledge of what can result from insufficient treatment.
On the flip side, it is always nice when faced with obstacles for methods to be explored so that you can address this as completely as possible.
I hope you can find an ILADS LLMD or LL ND with whom to work because it is very hard to figure this out for one's self. Expert guidance is so valuable. I hope you can find that.
And, have you considering using a rife machine? If so, it would still be best if so to see a LL doctor to guide you in support measures.
lymeHerx001
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posted
I think his yelling at me is out of frustration and loss of control on his part.
I cant control my terrible herx feelings or my checmical sensitivities other than avoidance!
I keep asking about the liver and he says all is well.
I wanted to take the genova test. At first he said yes, and then after I asked how much money it would be, he told me that it is more of an academic thing and not usefull for my condition!
Can you believe it!
As far as Milk Thistle making me suicidal I want to know WHY!!!
He didnt even raise an eyebrow, he just sat there and just about ignored that part.
I THINK THATS A KEY TO MY ILLNESS
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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I think his yelling at me is out of frustration and loss of control on his part.
I cant control my terrible herx feelings or my checmical sensitivities other than avoidance!
I keep asking about the liver and he says all is well.
I wanted to take the genova test. At first he said yes, and then after I asked how much money it would be, he told me that it is more of an academic thing and not usefull for my condition!
Can you believe it!
As far as Milk Thistle making me suicidal I want to know WHY!!!
He didnt even raise an eyebrow, he just sat there and just about ignored that part.
I THINK THATS A KEY TO MY ILLNESS
Posts: 2905 | From New England | Registered: Sep 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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Keebler
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posted
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I think you do need someone who is more knowledge with liver issues.
Milk Thistle can be hard on lots of people. There are so many other choices. A combination formula would be my advice, one that is prepared especially for you.
My pushing NAC comes from the fact that, in all the literature, it's the only written about regarding protection against abx' effect on the liver (as per the Cpn authors cited in post above).
Other thing may do that but I sure like going with those authors.
However, a good LL ND should be able to figure out WHY you have reactions to these ( my guess is that it's low glutathione or just a liver that can't be pushed too much).
I do very well with a formula with Bupleurum and Schizandra. And, it could be that either NAC or Milk Thistle - in a balanced formula - would work better for you.
Herbs are often so much better and easier when in a formula.
METALLlC BLUE
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posted
Anyone who wishes to give me their experience, please do. I can also share the experience other patients have had with you so you can see how your LLMD measures up.
Lymeherx, please let me know who this is. Obviously all reports are anonymous.
-------------------- 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.
lymeHerx001
Frequent Contributor (1K+ posts)
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posted
with the nac causing migranes has to mean something.
Its detoxing so it shouldnt do that right? Is the body just used to them being there and is going through shock and my head is swelling?
As far as the milk thistle, those do and do the pody patches make me feel very very in pain and suicidal the next day. Why is this,. the liver is dumping that much and still my enzymes are fine?
Maybe its really my nerves that are overworked with all of its reactions to the toxins (neuropathy) balance, tingling, brian fogs....oh yea
Wouldnt the xanax tone that down or cure it? Its all so strange.
Im going to see a psychiatrist just for a laugh.
SHould I tell him im just crazy or tell him that I have lyme and company and see what he says about a herx.
Probablly wouldnt have a clue.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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posted
schizandra also made me sick!
I wonder if the sauna really does anything for the liver?
Is it worth the money?
I dont have the space nor do I want the mess of a 200-300$ portable sauna. Call me crazy, Ive been called worse.
Posts: 2905 | From New England | Registered: Sep 2004
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From what I've read it sounds like your body has a hard time detoxing - I have a big problem with this myself
My LLMD has me taking drainage products (Pekana drainage remedies) and some other things to help me detox.
If I take something to "detox" my liver etc - all those toxins have to go somewhere - my body needs help eliminating them - that's where the drainage remedies come in
Your liver can be functioning fine, but if your body can't eliminate toxins they just hang out and make you feel terrible.
Since you sound to be a complicated patient (like me) I agree a different LLMD more knowledgable in detox pathways would help you
Just throwing anitbiotcs at a problem and then not addressing why you feel horrible and suicidal isn't acceptable
Good luck!
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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lymeHerx001
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thanks larkspur!
You understook more then this jerk. (hate to call him that but its true)
If you have a patient that gets SUICIDAL after abx or anti fungals isint there something wrong?
What the hell
Posts: 2905 | From New England | Registered: Sep 2004
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Keebler
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posted
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Larkspur's suggestion is a good one. I think that is a homeopathic and those are far easier on those who are sensitive to supplements.
You might also consider massage. That can really help settle the suicidal feelings if due to a "fried" system, really.
------------
Suicidal inclination after certain meds may not necessarily be the med (of course, it can be) but since you have that with so many it could be that your liver is overwhelmed.
"Detoxing" is a very long process. It is supposed to be gentle, not the flip of a light switch (although glutathione IV can be fast relief for many - have you considered that?).
Just because something is supposed to "detox" does not mean that it's a magic wand. Too much of anything can push the envelope. And the process of "detoxing" (although I so hate that term) . . . well, it still is a strain on the body and the brain.
ALSO, low blood sugar and adrenal fatigue are notorious for causing suicidal surges. This could be more related to the adrenal/endocrine function dropping to the floor.
As for taking xanax, THAT made me suicical, big time - AND it caused a big surge in sound and light sensitivity for me. And it's hard on the liver. That is not antidepressant but an anti-anxiety med.
With your sensitivities, I wonder if porphyria is a player in all this? Excess porphryins can, most certainly, trigger suicidal urges, too. Link is above about all that.
Rather than try this or that by yourself on a hunch, you have have a near-by LL ND (who is also an ILADS member). I do know there are couple in New England.
IMO, your time would be better spent seeing a LL ND rather than a psychiatrist - UNLESS that psychiatrist is also LL and ILADS-educated. Again, there are a few of those.
Email METALLIC BLUE (Mike). He has an extremely thorough list and many patient reviews. His email is: [email protected]
I don't know if he has LL NDs but, if not, PM me and I'll gather some and you can go from there.
Going back to the adrenal fatigue's connection with suicidal urges, that can be huge key, really. I went through that for years (and still do to some extent if I do too much). Please consider that and see if nourishing and resting adrenals and nerve tissue will help some.
Also, when you get this, you might get a home glucose test kit and check your blood sugar. If that is low, it can also be a suicidal trigger if adrenals are also toasted.
-
You asked about a sauna. A LOW-heat one is good, but not the hot ones. The hot ones will likely exacerbate your symptoms. Infrared is best as that low heat can still penetrate. But even a warm (not hot) bath is of help.
Keebler
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posted
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Before I knew why I was so sick, I was very suicidal. Nothing helped - Rx just made it far worse, herbs were not much help. I was just too sick.
Until the infection is adequately addressed, depression and mood shifts are often just part of the deal. It helps to understand about the adrenals, etc. but, ultimately, finally coming to terms with the toxic nature of lyme helped me ride out the waves.
After a good meal (and fish oil and magnesium) REST really was the best help at the times when I was ready to jump. I was too sick and unable to walk at all that time, but massage helped get stuff moving in my body and that is essential.
What is your level and type of magnesium. IF that is low, suicidal urges can increase.
To help figure out a support plan for HOW to ride out this time while the infection is treated and the liver and adrenals start to rebuild, this site may be of help:
Deliberations of a psychiatrist who evaluates and possibly diagnoses Lyme and other tick-borne diseases of the mind, sharing case histories of those who . . . .
lymeHerx001
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posted
Adrenal fatigue was mentied and I started on low dose cortef for that. The thing is even with that it ramped me up so much I couldnt sleep.
Coffee is a problem and I dont get "high" after my first cup, most likelly because of addiction.
XANAX taxes cyp450, it seems like most drugs do.
LLMD had enough sense to try my on IV glutothione pushes. Did four of those for free actually. Noticed nothing good or bad.
Again NAC gives me a migrane. Molybdenum didnt help that, neither did adding b5 to the mix.
With Mg, I tried glycinate and malate. Both help the bowls but its still up in the air whether or not they help with pain/fatigue/sleep.
My problem is in my legs, they hurt very bad all the time especially after I am working them climbing stairs at work.
The only time in the past 5 years I think I was pain free was the day after a wedding last summer.
I swam in a pool that day and the next day I woke up %100 pain free! No back or leg pain. It was like a dream or miracle.
Thats when I started looking at mattresses. I did end up getting that brand of mattress.
It has helped maybee 30-50% where I dont wake up with back pain anymore. But overall pain especially leg pain is an issue.
Biaxin has taken it away but only if Ive been off it a while.
180 degree sauna didnt bother me. In fact It seemed to shift my immune system so that I was feeling better afterwards.
Low heat doesnt suit me well. I dont sweat on anything below 140. It takes me a LONG TIME!
Never tried infrared.
I still need to know whats wrong.
I have gotten the name of another LLMD a couple towns over. Thank-you to the person who PMed me that. I will give him a call.
This guy is too busy, and yet people think he is terrific!
Posts: 2905 | From New England | Registered: Sep 2004
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Keebler
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posted
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I hope a new LLMD can help out settle on a course that will lead you to better health. You might ask for reading materials that he suggests to look over while you wait for the date of your appointment.
---------
For others reading this thread: Many lyme patients have cardiac issues. High heat can be very dangerous for some.
High heat can also cause some pretty major and long-lasting set-backs for some lyme patients.
lymeHerx001
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posted
thanks Keebler! Its doesnt feel good to be stuck
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
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quote:Originally posted by abigail: I never listen to my doctor as I am too busy running my mouth due to my past experiences with the doctors in network. Maybe he was just unloading on you. I know, no excuses, but I must drive my LLMD nuts...
actually when I do that to him he likes it. It makes him happy to know that others dont recognize lyme and he does. That alone is not enough though!@!!!
He doesnt know what to do with a difficult case and ignoring it doesnt help.
I realized that he really is not helpfull anymore. He is just enabling me to still be sick!
Small doses of abx coupled with MCS that disturbs ones life is not the way to go!
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