merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Well,I have had a terrible day. It started off by seeing a Rheumatologist. Boy was that a waste of time.
I had to have my neice sleep over to watch my kids so I could go to the appointments. I had my dad rent a car for me too.
Well first he takes a decent history. Then he tells me to put on the gown and he will be back. So I do. Then I hear him in the next rooms seeing appointments. I was annoyed because I only had an hour before I needed to go to another appointment an hour away.
So he comes back and he is looking at my face and kind of like flung my legs around in a weird circle. So he left again. I showed him pictures of a rash etc. He came back and said he didn't have all of the info he needed from my PCP. He said he needed more time to review the tests..
I told him that I needed to leave and he said ok see me in 3 weeks. I really think that you need to stop the IV antibiotics because that is probably why you feel so ill and still have a fever.
At this point I said that I really didn't get this theory. I also then decied to inform him that I was going to see a particular LLMD in 3 weeks. That was a mistake. He was ****ed.
I said I understand that there are 2 camps to the Lyme issues. He said there were not 2 camps, just one. He said that this particular doctor should be stripped of his medical license an banned. He said the whole medical community agreed. He said I would stongly not go If I were you.
I was mad. I said it was my body and if I want to see him I will. I said "your" side cant seem to fix me up and make me better, and according to "your" side I am cured right now.
Guess what I am not cured an I feel like crap, so "your" theory is clearly wrong. According to "you" I should be out having a margarita having a great old time... He was mad. I left at that. I wont make that mistake again
So this was topped by driving my sick a$$ an hour to the city to a hospital to see their ID department. I get there and let me just say how run down and dirty it was. Then I get put into a room.
I get this nurse who really dosent care. I asked if she could take my temp in my ear. She said we dont have those here. I said well my oral temps are not accurate. Didn't care,
I get a resident and she is kin takes a very good history. She does an exam. She leaves and is gone for at leat 30 minutes. She comes back with the "real" doctor.
Basically the real doctor said that I should be cured by now and that she thinks I need to stop the antibiotics. That antibiotics can "take the wind out of your sails".
I said you think the wind is out of my sails? I said I am disabled. I feel like death, you think the WIND IS OUT OF MY SAILS???!! she then told me what a great pcp doc I had an how he won ID awards etc. That there was nothing else for them to do.
I asked about a Lymphnode biopsy and she said that she couldnt feel any nodes. I was so annoye. I said I can feel them throbbing.
I pointed out my right epitrochlear node that was the size of a peach pit. She said I think that is a fatty tumor. I said really? I said that is why my PCP photographed it an measured it an suggested that a biopsy is the next thing.
I also said that I was concerned aout other TBI such as Babs. She said we would have seen it already, and the meds you have been on would have taken care of the rest... So She said my Lyme test is Negative.
I didnt get that. So I asked about it. She said I have Igm positive westernblot only and my IGG western blot has been negative the whole time. She seems to think this means I do not have Lyme anymore. I dont get it. Someone please fill me in on what this means...
So then I cam home had my PICC line dressing changed and was in agony (apparently from abx right?) because I didnt take any meds or ate because I wasnt sure wht was going to happen.
So then I slept for 7 hours and here I am...
All I can say is what the f? This was a huge waste of time and money. I cant wait to see LLMD.
posted
wow, merrygirl what an excting day hey? i know it sucks they dont think lyme exist and think you should be cured with a month of abx, dont listen to them. If you are not feeling better YOU should go to a LLMD. Alot of us here have been through the same thing you have forget about them< and just focus on seeing the lyme dr, brian
Posts: 217 | From Everywhere | Registered: Nov 2006
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posted
Oh my gosh, how awful!!! I'm so sorry you had to go through all of that. Thank God for good llmd's out there... I can't believe how ignorant a lot of doctors are about Lyme. It's really ridiculous.
I hope you have a good 4th. Just hang in there until the llmd appointment. They will be able to help you!
Posts: 248 | From Tejas | Registered: Jun 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I mean if they felt the way I have (I cant speak for everyone) they would do what is needed to get better. I have 3 small kids to care for.
I have wanted to be dead at least 5 times now. How is that a way to live? I think If I had no family I would not be here, or in a self induced drug coma... not kidding.
While I was at the second appt my right foot turned purple. Like it was a dead limb. It was really weird. I pointe it out and they said its just cold in here....
I feel like tearing someones head off..
I feel so bad for my LLMD and other ones too. I have never met my llmd yet but geez. There was so much anger in the doctors voice and hatred.
I just dont get it
Posts: 3905 | From USA | Registered: May 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I really regret mentioning his name. That was dumb. never again I swear....I hope I didnt cause more problems..
Posts: 3905 | From USA | Registered: May 2007
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posted
I'm sure it wasn't the first time that duck heard his name!!! It probably haunts him at night!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Thanks for the WB info and the pit. I read the thread. I have to admit I am still a bit confused. I am not sure why! LOL. It is my bad memory I think (must be the abx..lol) I hope he has night terrors all night that a$$.
I fed the gators too, now only if we could get a real pit... Posts: 3905 | From USA | Registered: May 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
OUCH!!!
DOUBLE DUCKED in ONE DAY!
You poor thing!
But good for you for standing up for yourself and others. WAY TO GO!
By the way.. the more feathers the ducks have ruffled when hearing a LLMD's name.. the more patient's lives that idiot duck has ruined.
Hate like that shows this duck has REALLY messed up a bunch of folks... and he KNOWS it!
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
So sorry you had to go through that.
There are a couple posters here who are lucky in that they have good ID docs.
Sadly, they are the exception.
The rest are guaranteed to duplicate your experience. That's why we try to gently warn new people how it will likely go, so they're at least mentally prepared. It is really not worth the stress to have to defend yourself like you're a hypochondriac or something.
You should tell the idiot nurse how babesia is actually treated -- in the rare event they would ever think to diagnose it -- since she is both clueless and arrogant.
I'd send a nice collection of articles on persistence to the doctor; with a nice note that you're sure he hasn't read them since he didn't appear familiar with them.
Idiots.
Poor you.
I wish you COULD have that margarita, after a day like that!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Sorry Melissa to hear about your day. I know many of us here have gone through similar dr appts many a times.
After I found this board and educated myself I printed Dr. B guidelines and protocol and brought it with me to my ID duck office. They too seemed annoyed, and told me to stay off the internet.
It is really wierd isnt it?? All of my life I grew up to believe that Doctors of all types knew what they were doing and that they all respected eachother. It wasnt until I got Lyme that I sadly found out this wasnt true.
I no longer go to any other doctors beside my llmd and my pcp who fortunately for me is a very open and understanding and willng to learn pcp. He admits straight up that he doesnt know how to treat me or what to do next. But he is more than willing to follow my llmd's lead and he prescribes me with my pain meds.
I think the rhumies and the id ducks get all defensive when we mention llmd's or lyme specialist. Because of course they think that they are. They get defensive because they DO NOT KNOW what to do with us. We are obviously very sick and they cannot deny that but they do not know what else to do. So it ****es them off to think another doctor may know more than they do.
Again,, I am sorry to hear your frustrating day. Just remember this too shall pass and this is all part of your learning experience with Lyme disease.
And now, if you hear of another person with Lyme disease you too can sympothize with them and truly have an understanding of what we all go through.
Keep you chin up
You will be seeing your llmd soon!!!
Sandra
Posts: 73 | From phoenix, az | Registered: May 2005
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bettyg
Unregistered
posted
melissa, , my heart goes out for the terrible way the DUCKS treated you today.
PROUD OF YOU for standing up for yourself and verbalizing as need be:bow:
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
merrygirl
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
arrrggghhh! I'm sorry you had a double whammy today! I'm happy that you have your LLMD appointment soon
Hang in there hun
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
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posted
It's an interesting experience facing the ducks. If I have the energy to hang in there, I debate the facts with them. I ask them where did they get their information, what's it based on, what's the evidence. And question it all, based on what I've learned in my ongoing studies in Lymology.
Anyway, I'm sure you'll appreciate your LLMD more because of this experience.
Posts: 13171 | From San Francisco | Registered: May 2006
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quote:Originally posted by merrygirl: Thanks for the WB info and the pit. I read the thread. I have to admit I am still a bit confused. I am not sure why! LOL.
This is the part the ducks don't understand [among others!!]
"One of my hopes is that doctors will someday realize that this controversy is a signal for them to search for the truth. Why is there such conflict in this very "political" disease if there is not substance for disagreement? Both IgG and IgM Western blots should be done for borreliosis.
With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
(from the above link)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I was in real pain for you just reading about your day.
Couldn't imagine doing it without harming a duck physically.
When other ducks ask who is treating me for my Lyme, I always say someone out of state.
Maybe I am too cautious, but don't want to give anybody any ammo to use against my LLMD.
Now....Take a deep breath. In through the nose and out through the mouth.
Do this a couple of times.
As you breathe out, let go of that negativity.
Hang in there for another 3 weeks.
Stress only fuels Lyme disease.
Please keep us posted on how you are feeling and how your LLMD visit goes.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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