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Old 11-17-2007, 07:49 AM   #1
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onmyway HB User
Got an Appt With Dr. R in NYC

Hello,

I am so excited I finally decided to call Dr. R's affice and see if I could get an appointment. I called Two Mondays ago and my appt is this Tuesday November 20 at 9:30 a.m.

I spoke with his wife and she said I must have an angel looking over me because normally people have to wait three months.

I live in Georgia and have been getting treated for the past year. I was on a picc line for 3 months and after that we followed it up with oral antibiotics. I however cannot get well. I am tierd of being sick and the pain is so bad I have just graduated to a Duragesic Patch and Vicoprofen for breakthrough pain! Not something to be proud of.

I have been trying to work and hold down a full time job but I believe that may have something to do with me back sliding! Needless to say I have been trying to resume a somewhat normal life. I refuse to let this awful disease take over.

On of my most recent scary symptoms is loss of hearing in both ears with a period of diziness and vision problems. I went to the emergency room on Monday and they did nothing for me. I don't even know why I went.

I am not sure what to expect form my appt with Dr. R. I have read Itsmylife's post and i kind of have an idea but any feedback form others would be great!

I am relly hoping that he will be the one. I remeber saying to myself 1 year ago that I will be well by this time next year. Here we are next year and still sick. I am saying it again for next year and I am hoping it will come true!

Any feedback would be greatly appreciated!!!!

Take Care
Onmyway

 
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Old 11-17-2007, 01:46 PM   #2
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Kelly5907 HB User
Re: Got an Appt With Dr. R in NYC

Onmyway... Congrats.. Im so happy you decided to call Dr. R.. I see him as well.. Actually I have an appointment with him the following day.. You will love him.. Have you ever been to the city before?? Enjoy every minute here... Let us know how it goes... Good Luck !!!!

Kelly

 
Old 11-17-2007, 01:51 PM   #3
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onmyway HB User
Re: Got an Appt With Dr. R in NYC

Thank you Kelly.

I have never been to the city. We are stayng on 42nd street any good restraunts to eat at that you know of.

Are you happy with Dr. R. How long have you been seeing him? Do you live near NYC? What kind of program does he have you on? Sorry for all of the questions.

Thanks,
Onmyway

 
Old 11-18-2007, 07:41 AM   #4
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Kelly5907 HB User
Re: Got an Appt With Dr. R in NYC

Onmyway... There are so many good restaurants to eat... you really could choose anyone you see and be happy with it.. You will love the city... its another world.. I live about 40 mins from NYC.. Iam very happy with Dr. R... I think he is my angel.. His staff is also amazing.. I have been seeing him since Aug 1st and I usually go once a month.. (you dont have to, I just choose to).. He treats very aggressively.. He had me on Biaxin and plaquenil since the day I saw him then 3 weeks later I had a PICC line inserted and have been on IV Zithromax, oral Omniceff and Minocycline since then.. He also had me have a Spect scan and takes lots of blood at each visit.. He has me on alot of supplements and alternative meds as well.. He also had me start Physical Therapy and wants me to have a Neurological Lyme Evaluation.. He is really good.. Iam so happy with him... Let me know if you have any other questions that I can help you with..

Kelly

 
Old 11-18-2007, 07:53 AM   #5
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onmyway HB User
Re: Got an Appt With Dr. R in NYC

Did he say how long he thought you would have your line in? Did he put it in or did you go to the hospital? I am not sure how all of this is going to work since I live so far away! I think once he gets all of the test results in and he has a program I think he said he would consult with my dr. here. Where did you do the spect scan? Did you get the reults from it yet? Sorry for all of the questions I just have so many.

I have already had a picc line in back in November of last year for 3 months but here in the South the think that is plenty enought time to get well. Little do they know. Anyway hence what has made me make the decision to see Dr. R.

Do you have any co-infections? Did he prescribe you medication on your first appt or did you have to wait. From your post I am thinking it all happened pretty quick!

Lastly are you feeling any better or are you worse form all of the medication? I know for me it got worse before it got better!

Thanks,
Onmyway

 
Old 11-18-2007, 11:51 AM   #6
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Kelly5907 HB User
Re: Got an Appt With Dr. R in NYC

Quote:
Originally Posted by onmyway View Post
Did he say how long he thought you would have your line in? Did he put it in or did you go to the hospital? I am not sure how all of this is going to work since I live so far away! I think once he gets all of the test results in and he has a program I think he said he would consult with my dr. here. Where did you do the spect scan? Did you get the reults from it yet? Sorry for all of the questions I just have so many.

I have already had a picc line in back in November of last year for 3 months but here in the South the think that is plenty enought time to get well. Little do they know. Anyway hence what has made me make the decision to see Dr. R.

Do you have any co-infections? Did he prescribe you medication on your first appt or did you have to wait. From your post I am thinking it all happened pretty quick!

Lastly are you feeling any better or are you worse form all of the medication? I know for me it got worse before it got better!

Thanks,
Onmyway
Onmyway... He didnt say how long I would have my PICC in but its been 3 months now and I dont think Iam near the end of treatment.. We havent even discussed pulling the line... I had mine put in by the hospital.. I do know people that had theres put in at the office and were very happy..He wanted me to have my Spect scan at Columbia University he said they were the best around at reading lyme patients and Thank God, mine came back clean.. Yes, I do have co-infections.. I have a couple the biggest being bartonella.. I think thats what hit me the hardest... It totally messed with my central nervous system...The Dr. prescribed me two oral antibiotics the first day.. plus a ton of supplements.. Iam no where near being in remission but Iam alot better then where I was several months ago.. I do have my "bad days" every month.. Its a real slow process... In my opinion.. It takes alot more then just the antibiotics.. The meds do alot but you have to do the rest.. I talk to the Dr. every time I go about other things that are out there that might help.. He is really knowledgeable..I know there are other people out there from other states that are also treated by Dr. R... Just be careful if he is going to work with your current Dr. that they work together and not against each other.. Dr. R treats aggresively and your current Dr. might not want that... Dont let that effect you getting proper treatment...I do think you will be impressed by Dr. R and I cant wait to hear about your visit.. Dr. R will be able to tell you they day of your visit whether or not you have any co-infections without taking your blood.. Have you ever been tested before for co-infecions? 3 months is definetley not long enough for treatment.. No way in the world would I stop now... your doing the right thing !!!!

Kelly

 
Old 11-18-2007, 02:08 PM   #7
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onmyway HB User
Re: Got an Appt With Dr. R in NYC

Thanks for the great reply. You are a wealth of knowledge.

I have never been tested for co-infections. I have been on a bunch of oral antibiotics that I believe my ID doc thought would help with co-infections but I did not make much improvement.

I too also have a ton of CNS symptoms. I have something going on with my right eye, it swells all the time and is always runny, my right hear hurts constantly and I have a slew of lymphnodes on the right side of my neck that are all swollen. I did have a CT scan and they were 1.8x1.4 in size. they were talking about biopsying them. I however have not had that done yet.

Did Dr. R talk anything to you about the Hyperbaric Oxygen Chamber? I saw on his site he talks about it and I have heard really good things about it. Do you know anything about it? I am really interested in doing it.

I am a little concerned about my Doc working with Dr. R because she may not treat as aggressively as he wants. At this point if she cannot help me than I will do whatever I ahve to to get well!

Are you submitting this to your insurance yourself? That is what I am going to do. I am hoping they pay for it. They have paid for all of my treatment thus far with no questions asked 100%.

Are you currently working? I saw in some of your older posts that you are 29. I am 34 married and no kids. Thank god I do not have kids at this time but I desperatley want to have some in the near future!!!! I am working full time and am in sales. It is so hard. i am thinking I may need to take off for a month or so until I can get this treatment under my belt.

I appreciate your support. I have learned a bunch form you and will post as soon as I get back in town from my appointment.

Thanks,
Onmyway

 
Old 11-19-2007, 07:57 AM   #8
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IL_gal HB User
Re: Got an Appt With Dr. R in NYC

Hi Onmyway,
Thanks for your post on the Rocephin picc line. It helped to put my boyfriend at ease in regards to his line staying in another month. I've been thinking of going to Dr. R too. Please let me know how your visit goes. I got bit June 2nd and I'm on my third doc and third combo of drugs. I feel better on the meds but as soon as I stop taking them, the symtoms come back so I know I'm not well yet. I'm 38 and in sales and like you I want to have kids soon too. But I don't want to infect them with this disease. Please let me know what Dr. R says about that. Also ask him if he thinks this disease is sexually transmitted. I think my boyfriend got it from me but his doc doesn't think it can be passed that way, but my doc does... We are both being treated by different doctors. Maybe we should both go to Dr R. Anyway please keep me posted on your condition and experience with Dr. R. Enjoy your trip to NY!

 
Old 11-19-2007, 11:10 AM   #9
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Rodney99 HB User
Re: Got an Appt With Dr. R in NYC

Hey neighbor. Did you do Igenex tests? If so did you submit the bill to your insurance company? I'm worried that they may not pay for it. I'm also concerned that because of my cdc negative western blot they may not pay for IV meds if I go there. Did you know that Atlanta has quite a few hyperbaric clinics? I saw that there is one on windy hill road. Get well soon.

 
Old 11-19-2007, 11:31 AM   #10
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Kelly5907 HB User
Re: Got an Appt With Dr. R in NYC

Quote:
Originally Posted by onmyway View Post
Thanks for the great reply. You are a wealth of knowledge.

I have never been tested for co-infections. I have been on a bunch of oral antibiotics that I believe my ID doc thought would help with co-infections but I did not make much improvement.

I too also have a ton of CNS symptoms. I have something going on with my right eye, it swells all the time and is always runny, my right hear hurts constantly and I have a slew of lymphnodes on the right side of my neck that are all swollen. I did have a CT scan and they were 1.8x1.4 in size. they were talking about biopsying them. I however have not had that done yet.

Did Dr. R talk anything to you about the Hyperbaric Oxygen Chamber? I saw on his site he talks about it and I have heard really good things about it. Do you know anything about it? I am really interested in doing it.

I am a little concerned about my Doc working with Dr. R because she may not treat as aggressively as he wants. At this point if she cannot help me than I will do whatever I ahve to to get well!

Are you submitting this to your insurance yourself? That is what I am going to do. I am hoping they pay for it. They have paid for all of my treatment thus far with no questions asked 100%.

Are you currently working? I saw in some of your older posts that you are 29. I am 34 married and no kids. Thank god I do not have kids at this time but I desperatley want to have some in the near future!!!! I am working full time and am in sales. It is so hard. i am thinking I may need to take off for a month or so until I can get this treatment under my belt.

I appreciate your support. I have learned a bunch form you and will post as soon as I get back in town from my appointment.

Thanks,
Onmyway
Onmyway... I also had eye problems as well as lymphnode issues...We have alot of similiar symptoms.. I havent research the hyperbaric oxygen chamber yet.. I have thought about it though.. its been on my list of things to talk to the Dr. about.. Iam focusing now on my meds as well as detoxing my body.. then maybe I will go for that.... My insurance has been great.. I just submit everything even lab work and they have been covering at least 80%.. I know iam very lucky... Alot of people cant get close to that.. I honestly would pay anything to continue treatment... Iam not currently working.. Iam on a leave of absence... I dont feel good enough to work... not even close.. besides even if I did.. my job wont let me work with the PICC in my arm..They say its way to much of a risk for them and me.. so I cant return until I have it removed.. Which isnt happening as far as Iam concerned, so I guess I will be out for a while.. I think its a good idea to take some time off and get focused on "you" and your battle with lyme.. you need a lot of rest and no stress... (easier said then done, I know).. Although Iam not married with no kids iam taking this time to make myself better and my 1st priority... Then I will think about having kids when all the buggies are gone... Anyway.. have a great time in New York.. and most important Good Luck with Dr. R.. Cant wait to hear what happened...

Kelly

 
Old 11-21-2007, 06:19 AM   #11
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onmyway HB User
Re: Got an Appt With Dr. R in NYC

Hi Kelly,

NYC was great. I was a lot to take in 2 days.

Dr. R was wonderful. He answered all the questions I had and said I had a lot of very good questions and he could tell I had been doing my research!

We covered all of my history and he said that my previous Dr. did the right treatment however we just stopped it to early.

We did the testing with the vials and I tested strong with the Lyme so he feels that I have put that in remission. However I tested very week in Bartonella and Babesios as well as underactive Thyroid.

He is starting me on a picc line of IV Zith and then oral Clindamycin and Mepron. Later he will add Rifampin.

I told him about my bad experience with the Levequin at 750mg and he said it was to high of a dose. He did feel however that I was having a herx reaction to the medicine. A very bad one at that!

I was very pleased.

The only problem I ran into was that when they went to draw my blood they could not get any. I have really bad veins and I guees they were rolling. They stuck me five times and nothing.

I had to bring all the kits home with me and have them drawn and sent off here! I plan on getting that done on Monday!

I am really excited about getting started on treatment! I just want to be well so bad!!

I hope you are doing ok. PLease keep me updated.

He also mentioned putting me on Collodial Silver as well. I saw where you and Rodney were talking about that. How is it working for you?

PLease keep in touch and have a wonderful Thanksgiving!!!!

Thanks,
Diane (Onmyway)

 
Old 11-21-2007, 05:42 PM   #12
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onmyway HB User
Re: Got an Appt With Dr. R in NYC

Thanks I will. Please let me know how the Levaquin goes. What is the milligram you are on?

I am interested to see how that goes!

Have a Happy Thnaksgiving!!!!

Diane

 
Old 11-21-2007, 06:01 PM   #13
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onmyway HB User
Re: Got an Appt With Dr. R in NYC

Hey IL Gal I did ask him about it bheing sexually transmitted and he said that he did no thtink so. He said there is not enough eveidence that it is and not to worry about that! Funny you asked that, we are thinking on the same lines.

He is wonderful and I would definatley recommend him to anyone. He believes that I have Bartonella and Babesios. Just what I thought but these Dr.'s here in Ga never even thought that evenb though I kept asking them about co infections!!! Ticker is right!!!! Always follow her advice and always be your own advocate because no one else will!!


Rodney,

Sorry I did not see your post until now. I paid for the Igenex testing out of my own pocket. However the piccline was paid for 100% as well as all the meds. I have great insurance. It does not matter that you were not CDC positive. It is based on a clinical diagnosis. Is Dr. P wanting to put you on one? If so do it you will be glad you did!

I saw that Hyperbaric Chamber Center in Marietta the other day. I talked to Dr. R and he was not sold on them. He said for the time they require and the Money he just wasn't sure. I think it is a personal thing! I really would like to try one for a few weeks though. I think it could only be beneficial. We all need Oxygen!!!!

Please keep in touch. What meds are you on now?

How are you feeling. By the way I heard your comment about the vertigo and I had that very bad at the beginning. Then after the IV treatment it got much better. I do though still have some bad vertigo days. I call them my high days!

Thanks,
Onmyway

 
Old 11-21-2007, 06:15 PM   #14
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Rodney99 HB User
Re: Got an Appt With Dr. R in NYC

oh, you didn't submit the bill to the insurance company? I am going to do that as soon as I can remeber to print out the form! Lyme brain.... If IV will help the off-balance woozy feeling I'm soo there. I wonder if I've seen you in the waiting room at Dr. P's. I spoke to someone who was saying she didn't know why here hair was falling out. Probably not. long shot. BTW I can't see anyones profile on here, can you?

 
Old 11-21-2007, 08:30 PM   #15
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Re: Got an Appt With Dr. R in NYC

onmyway, I am so glad you have seen a good Lyme doctor and have been tested for the co-infecions.

Babesiosis treatment can be rough for some people. Many people herx on day three and in week three. Make sure you take something fatty when you take the Mepron (cheese, peanut butter, etc.) or it will not be absorbed properly. Also, if you are taking COQ-10 Dr. B. says not to take it when on Mepron.

In case you did not know, there is a great sleeve you can get to cover the PICC site so you can shower without getting the site wet. It is called a Mid-Arm Protector and you can get it at Brown Medical. There are probably other places you can get them also.

From what I understand, if you have Babesiosis hyperbaric oxygen chambers can make the symptoms worse.

Good luck with your treatment!

 
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