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Sally Anne Dying Breed

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SallyAnneDyingBreed

Flash Member

Posts: 18

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon5.gif> posted 03 September 2003 19:25 [Click Here to See the Profile for SallyAnneDyingBreed] [Click Here to Email SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote]

Can someone give me a few good websites to visit. My doctor doesn't seem to know much about Lyme. I had the rash and got two weeks of doxycicline and then two more weeks when I told my doctor I was still sick, but that was a few weeks ago but I'm still sick and I don't know what to do. My doctor said I need to see an infectious disease doctor now. He said I might not really have Lyme since I didn't get better with a whole month of antibiotic. I had a relative in new york who had lyme and has never been the same.

Help me please.

Does anyone have the name of a good doctor in Maryland? I'm here in centreville in queen anne's county. You can write to me sally anne or my husband dorsey at my email address SallyAnneDyingBreed@hotmail.com

PS my friends also call me lucy.

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SallyAnneDyingBreed

Flash Member

Posts: 18

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon1.gif> posted 04 September 2003 11:02 [Click Here to See the Profile for SallyAnneDyingBreed] [Click Here to Email SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote] Wow thanks to all of you for the information and the emails.

A couple of people asked about my treatment. I got the first two weeks of antibiotic as soon as I saw my doctor after noticing the rash. At first he said it was a spider bite but he gave me the antibiotic anyway. He sent away a test and two results came back positive for Lyme. This was all about a month or so after the rash since it took a couple weeks to get an appointment to see him and when I first had the rash I didn't feel sick right away and only called a few days later when I started feeling like I had flu. I think I got the tick bite about a week and half before that when I was camping near the eastern shore. The second two weeks of antibiotic he gave me right away when I called and said that I wasn't feeling better as the first two weeks of antibiotic were running out so it was one full month straight. I wish someone had told me to stay out of the sun too because I got really sun burnt in the meantime one day and I wish I knew the drug could cause that my pharmacist told me later.

I don't know which doctor to call I got two names from most people who emailed dr singleton and dr shoemaker. Dr Shoemaker is closer to me. Any suggestions for the better choice? I want to call today. So many thanks to all who wrote and responded to me here.

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SallyAnneDyingBreed

Flash Member

Posts: 18

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon1.gif> posted 04 September 2003 14:18 [Click Here to See the Profile for SallyAnneDyingBreed] [Click Here to Email SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote] Sorry I forgot to answer that. I was taking two blue pills a day, one in the morning and one in the evening. The bottle says 100 mg?

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SallyAnneDyingBreed

Flash Member

Posts: 18

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon1.gif> posted 04 September 2003 14:54 [Click Here to See the Profile for SallyAnneDyingBreed] [Click Here to Email SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote]

Cbb thanks. I saw where the guidelines say that. My doctor showed me a textbook that said the dose he was giving me was the right one. I saw the same thing about 200 mg on the CDC website too and on webmd and other places. I don't know what is right? Does anything else agree with Dr Burrascano's guidelines?

Oh and what is llmd? Is that an infectious disease specialist? People who wrote emails said to avoid them although that is confusing to me because isn't this an infectious disease?

One person said I should try a doctor at the NIH but didn't give me any names? How does one get an appointment to see a doctor there anyway.

Sorry I have so many questions this is all confusing. I don't know what to do. Help please.

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SallyAnneDyingBreed

Flash Member

Posts: 18

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon1.gif> posted 05 September 2003 06:54 [Click Here to See the Profile for SallyAnneDyingBreed] [Click Here to Email SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote] Thank you cbb for all the information. That camp a and camp b thing was very upsetting. It is hard to believe that things can be that bad. It seemed a little well extreme to me. I'm not sure that things are ever that black and white but I guess I will have to see for myself. I am going to see the doctor and I'll see. I don't think I should judge in advance what they're going to say.

I am going to see the infectious disease doctor that my doctor recommended. I think I'm also going to try Dr Singleton based on some more emails and some of the things people said that were very negative about this dr shoemaker. And his website just kind of turned me off too.

Kathy thanks for your advice too. I guess this might sound stupid but what the heck is a kett? Exercise sounds great and I like to do it but right now I can't really even get out of bed so I don't know how I could do that. I don't know about samento. I want to get some real antibiotics from a doctor.

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Author Topic: New, Overwhelmed, Confused and Questions SallyAnneDyingBreed

Flash Member

Posts: 18

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon1.gif> posted 05 September 2003 12:20 [Click Here to See the Profile for SallyAnneDyingBreed] [Click Here to Email SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote]

This is all very overwhelming. I don't understand this whole controversy about Lyme disease. I don't care either, I just want to get treated and treated right, whatever that is.

I said I had a relative in new york who had this and never seemed to get better. She had a lot of treatment and it didn't really seem to help her. I'm thinking that since it is early on for me I have a better chance.

I've also known a fcouple of people who got Lyme and got totally better and all they had was a few weeks of antibiotics. Which makes me wonder about some of the advice that I need treatment for many months, which wasn't needed for those people and didn't really seem to help my relative.

To me it seems like views on all sides of this controversy are pretty extreme and I'm wondering if there is some middle ground?

I also got a couple of emails about using the names of doctors here. One of them was pretty mean and made it like I committed a crime. I didn't see anything about not using their names when I signed up here and no one told me so if it was a problem I'm sorry but I didn't know. Is this a policy here and what is the reason? It really confused me since one of the doctors has his own website which doesn't seem like someone who didn't want his name out there.

My doctor told me that a positive test doesn't mean I definitely have Lyme. Is that true? How can people tell me to not go see the infectus disease doctor when my doctor told me that was what I needed to do. No one even knows who the doctor is but lots of people have criticized him before I've ever seen him.

I made an appointment with one of the doctors that people suggested, not the one with the website and I'm going to see him too.

But my doctor told me that the only way the insurance would even consider paying was if the infectuous disease doctor said I needed more antibiotic.

Please help me this is very overwhelming and confusing and I really don't even know who or what to believe.

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SallyAnneDyingBreed

Flash Member

Posts: 18

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon1.gif> posted 06 September 2003 10:14 [Click Here to See the Profile for SallyAnneDyingBreed] [Click Here to Email SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote] Thanks for the replys. I hear what you are saying and it is nice of you to share your experiences. These answers seemed much more reasonable and less extreme and makes more sense than this extreme camp a and camp b stuff. Things just can't be that black and white.

I still have trouble believing that every infectuous disease doctor in the world is going to be the same. I've been through illness before with a close family member and I found that the doctors didn't agree and that if you go to more than one doctor they usually have different opinions about things. I don't know how the patient is supposed to choose the right opinion but that is another story.

I am going to give this infectous disease doctor a try the one that my family doctor suggested. I'm going to see one of the doctors you guys recommended too.

And another one of my doctors, my gyn who I happened to see for routine exam said I should go to Johns Hopkins where there are experts about Lyme and they'll take a team approach since I have multiple problems now. I think I'm going to call like he suggested. Is Hopkins any good for Lyme? I think they must be they're considered a great institution on the cutting edge of things.

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SallyAnneDyingBreed

Flash Member

Posts: 18

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon1.gif> posted 06 September 2003 10:32 [Click Here to See the Profile for SallyAnneDyingBreed] [Click Here to Email SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote]

Thanks for these replies. This seems much more reasonable than the camp a and camp b stuff that seems just too extreme to me and these answers made more sense to me, that some people get better and some people have more problems.

I am still wondering about the doctors names thing, is that a rule here or not?

I hear what you are saying and thank you for sharing what happened to you. The infectous disease doctors you saw probably aren't the ones I am going to see that my family doc suggested and I cant believe that all infectuos disease doctors are going to be the same way. I have to give this guy a chance. My family doctor said that no way is my insurance going to pay anymore unless he says I have Lyme so I feel like I have to go.

I dont think all infectous disease doctors think about AIDS. I had cellulitis and an infectous disease doctor probably saved my leg. Really I think calling them ducks is very disrespectful and extreme and being extreme makes it hard for me to accept what is being said. I know that guy wasnt a duck he was a fine doctor kind and caring. I saw him before I travelled to south and central america too because he did travel medicine and I had to get some vaccinations and he gave me treatment for malaria in advance. I'd see him except he moved to another state.

I'm also going to see the Lyme doctor some of you suggested but not the one with the website. I cant believe that all doctors in a specialty agree about anything. Ive been through illness before with a close relative and none of the doctors agreed about what to do. I even hurt my foot and had five different opinions on what to do so it is hard to believe that all infectus disease doctors think the same way about Lyme. I'm going to give this guy a chance. How I will choose between different opinions if that is what I get is a different story that we'll see about later if it comes to that.

I had to see my obgyn for routine visit and he said I should go to Johns Hopkins and that they are experts there and will take a team approach since I have problems that might need different specialists. I think that sounds like a great idea since Hopkins is one of the best hospitals in the world. Any experiences with Hopkins? I'm going to ask that as a different question here.

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SallyAnneDyingBreed

Flash Member

Posts: 18

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon5.gif> posted 06 September 2003 10:40 [Click Here to See the Profile for SallyAnneDyingBreed] [Click Here to Email SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote]

I had to see my obgyn yesterday for routine exam and I was telling him about my experience having Lyme and he suggested I go to Hopkins. He said they have experts and even said he thought they had a Lyme clinic. He said they'd take a team approach since I have problems that might need different specialists.

Hopkins has the best reputation as one of the best hospitals in the world and they have always been on the cutting edge of things. I think this sounds like a good idea and I'll get several opinions at once.

Has anyone had experiences good or bad with hopkins?

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Author Topic: NIH for doctors for Lyme? SallyAnneDyingBreed

Flash Member

Posts: 18

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon1.gif> posted 06 September 2003 14:16 [Click Here to See the Profile for SallyAnneDyingBreed] [Click Here to Email SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote]

One of you wrote to me and suggested that I try to find a doctor at NIH for Lyme.

I didn't know that the NIH had doctors to treat people, I thought they just did research. How does one get a doctor to treat them at NIH. Is this a good place to go for Lyme treatment?

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SallyAnneDyingBreed

Flash Member

Posts: 18

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon1.gif> posted 07 September 2003 12:39 [Click Here to See the Profile for SallyAnneDyingBreed] [Click Here to Email SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote]

Im editing my post, I couldnt delete it.

Someone hurt my feelings and said some things that seemed mean to me but I dont want to fight, Im sure this person means well.

Please remember Im new and feeling confused and overwhelmed so be patient with me and try to be kind. I cant take it right now if you feel you have to be mean to me I cant stand it. I came for support and to get some information. Im not in the advanced class Im here for basics.

Have a nice weekend.

[This message has been edited by SallyAnneDyingBreed (edited 07 September 2003).]

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SallyAnneDyingBreed

Flash Member

Posts: 18

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon1.gif> posted 23 October 2003 18:51 [Click Here to See the Profile for SallyAnneDyingBreed] [Click Here to Email SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote] When I wrote a message here for for help I found that the most helpful people emailed me but didn't post messages on this board.

There is some rule or tradition that I don't understand about not posting doctor's names here so you should post your email to get help.

There are people who will email you great information who won't write messages on this board.

Post your email. You'll get help.

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Author Topic: Lyme and Sciatic Nerve Info Anyone? SallyAnneDyingBreed

Flash Member

Posts: 22

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon1.gif> posted 09 January 2004 19:32 [Click Here to See the Profile for SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote]

Does anyone have any information sources on how Lyme might affect the sciatic nerve?

Thanks in advance for your answers.

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SallyAnneDyingBreed

Flash Member

Posts: 22

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon1.gif> posted 09 January 2004 19:47 [Click Here to See the Profile for SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote]

quote:Originally posted by TX Lyme Mom:

Bb loves the nervous tissues because of its high content of fatty acids, since Bb lacks the genetic know-how (because of its ultra-small genome size) to manufacture its own fatty acids so it has to steal them ready-made from its host.

The sciatic nerve is part of the nervous system.

Next question....?

Yes I know that Lyme can affect nerves. I am looking for something specific about Lyme and the sciatic nerve.

Does anyone have any information sources on how Lyme might affect the sciatic nerve specifically. I'm looking for something published.

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SallyAnneDyingBreed

Flash Member

Posts: 22

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon1.gif> posted 10 January 2004 09:19 [Click Here to See the Profile for SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote]

quote:Originally posted by TX Lyme Mom:

So far, this is all I've found on PubMed.

PS -- I apologize for that smart-aleky remark. I know it's not funny when that blankety-blank nerve thing is going on. I shouldn't have trivialized it so quickly. It's really not too funny when it's hurting as bad as sciatic nerve pain can hurt.

I took no offense. But I need published articles. What is "pubmed"? Yes nerve pain hurts an awful lot.

Is there nothing about Lyme and sciatica? I don't know if the article you quote is about Lyme at all. Thanks for trying to help.

I wish other people would chime in here. I really need to show something to my doctor and insurance on this.

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SallyAnneDyingBreed

Flash Member

Posts: 22

From: Centreville, MD, USA

Registered: Sep 2003

<http://flash.lymenet.org/ubb/icons/icon1.gif> posted 11 January 2004 08:41 [Click Here to See the Profile for SallyAnneDyingBreed] [Edit/Delete Message] [Reply w/Quote]

Still looking for any published articles anyone has on Lyme and sciatic nerve problems.

And I'm still wondering what is Pubmed?

Thanks in advance.

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SallyAnneDyingBreed

Frequent Contributor

Posts: 33

From: Centreville, MD, USA

Registered: Sep 2003

posted 26 September 2004 09:19

Yes his office is a nightmare. Where's he get that witch nurse E? Last minute cancellations, time after time. But you can waste your time and see the nurse practitioner. They have a new one every time. None of them know squat about Lyme either. It all started before his car accident too, so that isn't it. I'm hearing this alot. I think they're trying to dump their Lyme patients.

I guess this is what happens when good llmds go bad?

Suggest getting on Dr Anne C's waiting list.

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SallyAnneDyingBreed

Frequent Contributor

Posts: 33

From: Centreville, MD, USA

Registered: Sep 2003

posted 28 September 2004 00:27

to the top wondering about other people's experiences

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SallyAnneDyingBreed

Frequent Contributor

Posts: 38

From: Centreville, MD, USA

Registered: Sep 2003

posted 26 September 2004 09:19

I guess this is what happens when good llmds go bad?

Suggest getting on Dr Anne C's waiting list.

IP:

SallyAnneDyingBreed

Frequent Contributor

Posts: 38

From: Centreville, MD, USA

Registered: Sep 2003

posted 28 September 2004 00:27

to the top wondering about other people's experiences

IP:

SallyAnneDyingBreed

Frequent Contributor

Posts: 38

From: Centreville, MD, USA

Registered: Sep 2003

posted 29 September 2004 14:24

Anyone else?

I wonder what is wrong with that Nurse? She seems more like a mental patient than a nurse to me. Manic. And mean.

Sitting in his waiting room I've heard a lot of stories about how good it used to be there and how bad it has gotten.

Anyone else?

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SallyAnneDyingBreed

Frequent Contributor

Posts: 38

From: Centreville, MD, USA

Registered: Sep 2003

posted 29 September 2004 14:25

Anyone else?

I wonder what is wrong with that Nurse? She seems more like a mental patient than a nurse to me. Manic. And mean.

Sitting in his waiting room I've heard a lot of stories about how good it used to be there and how bad it has gotten.

Anyone else?

IP:

SallyAnneDyingBreed

Frequent Contributor

Posts: 38

From: Centreville, MD, USA

Registered: Sep 2003

posted 29 September 2004 14:26

Anyone else?

I wonder what is wrong with that Nurse? She seems more like a mental patient than a nurse to me. Manic. And mean.

Sitting in his waiting room I've heard a lot of stories about how good it used to be there and how bad it has gotten.

Anyone else?

IP:

SallyAnneDyingBreed

Frequent Contributor

Posts: 38

From: Centreville, MD, USA

Registered: Sep 2003

posted 29 September 2004 15:31

Still wondering about other people.

That nurse, she's more like a mental patient. Manic. Mean. Scary. Control freak.

Sitting in the waiting room I hear what a great doctor he used to be. I sure am not seeing it, cancellations, forced to see the nurse practitioner promised I could see him next time, but that gets cancelled.

What is going on?

Anyone else?

IP:

SallyAnneDyingBreed

Frequent Contributor

Posts: 38

From: Centreville, MD, USA

Registered: Sep 2003

posted 29 September 2004 15:33

Still wondering about other people.

That nurse, she's more like a mental patient. Manic. Mean. Scary. Control freak.

What is going on?

Anyone else having a bad time there? I sure hear it in his waiting room.