posted
Recently, I've been feeling really ill. I'm out of work and can barely manage to get through some days. I've been dealing with my primary Doc for awhile now and she finally reffered me to a neuro due to severe head pressure, floaters, blurry vision etc. I had my appt yesterday and he did an amazingly thorough exam that lasted almost 2 hours.
I told him my top 10 symptoms because I didnt want him to think I was crazy or have some kind of anxiety disorder etc (which Ive been told when I first became ill). I never mentioned LD to him because I know how DR's can be and I didnt want to make him feel I knew more than he did or whatever.
He came back in the room and said "You have a classic case of LD" (I almost died in shock). He also said "Im usually not the DR to diagnose this, however, If I called an ID DR and told him, I think I have someone here with LD he would laugh at me". It was such a great experience to have a DR that thinks outside th box (esp a nuero). I'm still gathering up the $$ to follow up with a VERY expensive LLMD that I saw (got IGENEx test and other tests but can't afford the results) but in the meantime this DR is sending me for some blood work and an MRI with contrast (he told them to look for LD..the blood work is : IGG and IGM if positive reflex with WB & DNA by PCR (I'm not sure what these tests are).
Anyway, Im just glad that he is taking me seriously and he must have an open mind if he suspects LD and knowing I've been having these symptoms for years!!!!
-------------------- "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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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
mrsdizzy,
This is good news. But, be aware that he probably will not be willing to make a diagnosis without a positive test.
His tests mean that he is ordering an Elisa test and, if it is positive, having it confirmed by both Western Blot and PCR.
That's a problem, because the Elisa test returns many false negatives. So if that is negative, he probably won't look further. You may want to go into the next appointment with some information that shows how poor the Elisa test is as a diagnosis tool.
It's ok to be knowledgable when you talk to a doctor. If your tests are negative, tell him that you decided to do some research after the appointment, and you discovered the tests are inaccurate.
I actually found a great neuro last year. He was really willing to consider Lyme as a cause, and couldn't believe I hadn't been put on IV by my LLMD.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I'm curious to see how far he actually takes this. He did talk about pulsing antibiotics, but didn't want to give me anything until the tests were run. We'll see what happens. Does anyone have exp. with DR C in Tampa? Please let me know. I feel so ill I need IV and need a DR willing to treat this aggresively.
Thanks so much for everyone's help and support, if it wasn't for this board I would probably be dead, really!!
Thanks & god bless!
-------------------- "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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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Dear Mrs.Dizzy, This info came to me third hand, but a friend with Lyme told me she has a friend who went to Dr. C and thinks he is an arrogant, a**.
Having said that, the only other choice in the Tampa Bay area that I know of is Dr. S., also an arrogant a** and an expensive one, at $9 per minute, no ins. accepted. He is a protege of Dr. Shoemaker's neurotoxic mold protocol.
Dr. R. is a possibility in the Lakeland area, but he is way behind on the latest tx, giving only low dose Oral Doxy to late-stage Lymies, and he does nothing about detox.
I wish I had better news for you. However, the saying goes that one man's cake is another man's posion, so you may like one of these guys even though others don't. Best of luck to you, and I hope you find someone good to help you.
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
does anyone have first hand knowledge with Dr C in Temple Terrace? Please let me know, thanks.
-------------------- "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
That's great that the neuro doc was willing to know about Lyme. Let him know how much you appreciate his awareness...do it for us. Thx.
Posts: 13171 | From San Francisco | Registered: May 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
wow. you ARE lucky. these were MY same symptoms too, but i made the mistake of going in and telling my neuro it was LYME after he said he had no idea.
he was then not helpful at all after this and turned out to be one of many doctors i would see before i got help.
just to let you know, there is hope, and you will get better.
i have been on two months treatment and although i am no where near where id like to be, i am better than i was, especially with the head pressure.
i know, thats enough to want to go make you play in traffic.
hang in there, im hanging with you
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
He never asked me about a tick and I never told him about one either. I just told him about my symptoms and that I've been through countless DR's and the only thing they came up with over the years is menieres disease/panic/anxeity disorder/heart palps. Who knows, someone in his family might have had it or a patient that he knows or something to make him so aware of this and for him to even bring it up it's a miracle. I'm on the right road and I'm ready for the fight, Im not giving up!!!!
THanks :-)
-------------------- "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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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
my neurologist sent me immediately to an id doc in philly, he knew would start iv abx. i did not know about llmd's at the time..
he did give me abx for 3 months and he learned alot about lyme disease from my teachings and articles i brought every appointment.
he was the first doc out of 10 that would treat me for lyme with iv. this was with a postive elisa and western blot. so go figure. and this is in chester county pa home of the lyme bug!!!!!!!!!!!!!!!!!!!
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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posted
WOW, lucky! I'm crossing my fingers really hard that my MRI & elisa show results and he follows through with what he "suspects". He knows Im not crazy and the only DR that EVER listened to me. I turned to my mother as we left and said, he either saw that show (mystery diag.) or he has someone close to him who is suffering. Thanks to this board and a good DR, Im GOING to have my life back!!!!!!!!!!
It's the nuero symptoms/cardiac I can't take, they are frightening and feels as though Im gonna have a stroke with all this pressure in my head. I also have goo that comes out of my ears (probably CSF).
-------------------- "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
Wow...a dr. that may actually give a care!! I too am curious to see how far he goes for you.. It is good to hear that there is at least one that is willing to "think outside the box"..
Like you, I have been to countless dr's and not a one of them has gone that "extra step"...they diagnose the symptom and leave it at that..
Unfortunately, my primary is only a RPA, so he is limited on what he can do, but I have found that if I take info. in for him, he is willing to do what he can...
It was him that finally took the step of saying that it sounded like I had Fibromyalgia to him and sent me to a Rhuematologist.. That Dr. was the most lame, arrogant SOB I have ever met..
But, he did confirm the Dx and then turned my care over to his RPA, who has even less "bedside manner"
It took me having to take my son to ER for a tick , some research on my own and remembering a "bulls-eye rash" I had when I was 17, to make the connection..
I took the info. to my primary and he ordered the ELISA for me..but I fully expect it to be negative.
I have another appt. tomorrow for the results and am taking more info. about the false negs on the ELISA and see if he will go that extra step for me..
Its just too bad that hes only a RPA, because he is the most "willing to listen" and "compassionate" Dr. that I have met...
Good luck with your "journey" though and I pray that it all works out for you Posts: 50 | From Port Crane, NY | Registered: Apr 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
dizzy-
i know it feels to good to know you are on the "right road". (however long and hard that road may be)
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
I went through years of HELL like most of you. Not knowing what the hell is going on, people calling you crazy etc.
I'm ready to fight the fight long and hard!
-------------------- "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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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Good for that neurologist!! I went to 4 of them, and they didn't have a clue. By the time I got to the last neurologist, I thought lyme might be the issue (thank God for the internet), and mentioned that to him. He rolled his eyes. He also said "if lyme is the cause of your neurological problems, then lyme will be in your CSF. (not a true statement). I was delighted to mail him back a copy of my report from Columbia (Dr. F) that stated I needed IV antibiotics for probable lyme disease!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I AM JEALOUS*!@*)!*)!!!!!! On behalf of all the sad phone calls I get from people who didn't have such a good experience*)!*)!!*)*!)!!!!!!!!!!
You are so lucky*)!*)!*)!!!!!!!!
I hope he stays the way he has been with you*)!!! YOU DESERVE to be treated- you deserve to get well- we all do*)*)!! And I read your other post re Ipswich- wow!!!!!!!!!!!!!! Best wishes, Sarah in CA
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Just to update you, I love Dr. C! Now, will this always be the case? Maybe/Maybe not, however, I'm starting IV treatments and I'm not so sure if my PCP would have went along with his protocol if he wasn't an ID Dr. Also, I was so lucky to have a Nuero "suspect" LD as I think my PCP would have not done a thing. She had 2 specialists saying the same thing on BOTH sides of her.
So, as of now, I'm on the right road and I'm SOOOOOOooo thankful that I found Dr. C!
I never listen to hearsay, if I did I would have NEVER saw this certain Nuero in the first place. It's my friend's DR and she absolutely hates him!
I will only speak from my own experience.
-------------------- "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
I wanted to follow up on the Nuero that I have been seeing if anyone is interested :-)
He gave me a script for a Lyme PCR test and the Elisa, I was really nervous to get the tests done because I "knew" they would come back negative.
Anyway, I went to see him last week as a follow up and he was flipping through my file and said "The lab messed up on the tests" it said something about error at collection site!@!!!
I told him I have an ID Dr. (who is my LLMD) that retested me and it came back positive. At this point he said "we'll I guess we got it" (he was happy because I made him feel like he found my cure to boost his complex, however he is AN AWESOME Dr. and actually suspected Lyme right from the get go).
He also said he is in agreememnt with the IV Rocephin and said he is sending a letter to my PCP stating this. (never had a Dr. do something like this).
I'm so greatful that I can say my ID Dr., I think it adds a lot of confidence to my case (if this makes sense). I'm also VERY lucky that everything worked out the way it has, I started treatment this past Monday.
I'm not herxing the way I thought I would though, BUT tomorrow I start Flagyl (500 mgs 3x's a day) with the Rocephin. I'm a little nervous about this
I wanted to thank each and every one of you for helping me through this. If it wasn't for this board, I wouldn't know what to do. YOU GUYS ROCK
Luvs,
mrs dizzy
PS: I do have quite a bit of the "d" word and I am wondering if I'm taking enough probiotics:
Acidophilous (sp?) 12 billion some other brand 12 billion
I take these 3 times per day and I ordered Therelac last night.
Thanks again!
-------------------- "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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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
mrsdizzy,
What wonderful news! There are a few really good neuros out there.
The one I saw couldn't believe I had never been on IV for my abx.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I am so happy for you, isn't it wonderful when you find a MD that is willing to take the time and listen and think outside the box a little?
I went through countless specialists during my search and I also found a neuro who was willing to think Lyme. My WB is IND as I have 1 + and 2 IND and 4 + and 5 IND but she gave me a clinical dx of Lyme. She ran every other test in the world, including a spinal, to rule everything else out. Then she followed the treatment my LLMD wanted. I was so lucky.
Unfortunately, she is gone and now I am trying to convince her replacement to keep working with my LLMD.
The first thing she asked was if he was an ID. Ugg! I did see 2 IDs and they both said it wasn't Lyme. I sure hope I can convince her because without her I am paying for meds out of pocket again.
I hope you start feeling better. It is so nice that you are getting into treatment and have good MDs that you trust.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
good luck mrdizzy with your treatments
make sure to space all probiotics as far away from infusion time & orals as well. Like at least 2 hours.
take care & hope you are feeling better soon
ps: you may want to ask your doc about liver/GB support
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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![[Smile]](smile.gif)
I too am curious to see how far he goes for you.. It is good to hear that there is at least one that is willing to "think outside the box"..![[Frown]](frown.gif)
![[Wink]](wink.gif)
![[Roll Eyes]](rolleyes.gif)
He also said "if lyme is the cause of your neurological problems, then lyme will be in your CSF. (not a true statement). I was delighted to mail him back a copy of my report from Columbia (Dr. F) that stated I needed IV antibiotics for probable lyme disease! ![[Eek!]](eek.gif)
![[bow]](graemlins/bow.gif)
![[toilet]](graemlins/toilet.gif)
and I am wondering if I'm taking enough probiotics:![[group hug]](graemlins/grouphug.gif)
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