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Saw the new LLMD in NY today!

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Lyme Disease
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betterhealth
Regular Member
Joined : Mar 2010
Posts : 230
Posted 4/9/2010 1:10 PM (GMT -7)
Well, my wife and I traveled three hours round trip to NY today to visit the new LLMD.   My local pharmasist had recommended this doctor to me last summer.  His daughter had been treated by him for neurological lyme and he had all good things to say about him.  He insisted that I would have to leave CT to get the proper treatment.     I don't know why it has taken me so long to follow his advise.

I like the new doctor a lot, although we spent most of our time with the Nurse Practitioner who entered my history and medical records and drew my blood.     She documented a chronoligical history of my symptoms, tests and treatments to-date.   Good thing my wife came along because much of it is a total blur to me.   My wife has kept a detailed journal of events ever since I first got sick.

The doctor spent a lot of time discussing MS, pointing out the similarity in symptoms with lyme and reviewing the treatments for both.   This really confused me because I thought we would only be discussing lyme.   He recommended that we treat for lyme but, almost gave the impression that it might be an option to treat for MS.

He laid out the ground rules, which include:

No simple sugars (cakes, candy, processed foods, etc..)

No alcohol

Daily exercise

Drinking lots of water

I will start out with a combination of two oral antibiotics.    He will re-evaluate the mix of abx when I come for my monthly visits.

The NP and doctor both indicated separately that I may need to return to the IV-Rocephin at some point.    Instinct tells me that this may happen sooner than they think because my stomach does not tollerate oral antibiotics very well.

Anyway......  Glad to finally be onboard with a LLMD.

 

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scorpio1960
Veteran Member
Joined : Jan 2009
Posts : 914
Posted 4/9/2010 3:10 PM (GMT -7)
Sounds like you're on the right path to beating this darn thing. By any chance did you see Dr. R? He's a wonderful doctor with a fantastic reputation for success in treating difficult cases and genuinely cares about his patients. Good luck!
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betterhealth
Regular Member
Joined : Mar 2010
Posts : 230
Posted 4/9/2010 3:38 PM (GMT -7)
I'm seeing Dr. C
However if Dr. C doesn't make me better.... I'll be seeing Dr. R

Thanks for the well wishes!
1960 has significant importance in my life.
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scorpio1960
Veteran Member
Joined : Jan 2009
Posts : 914
Posted 4/9/2010 3:47 PM (GMT -7)
Now I'm curious and will have to find out who Dr. C is...lol! I hope you never need to switch docs again and Dr. C gets you on track. Have a great weekend.
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betterhealth
Regular Member
Joined : Mar 2010
Posts : 230
Posted 4/9/2010 5:34 PM (GMT -7)
OMG....... Just picked up my new prescriptions from CVS.

Amoxicillin 3000MG/Day
Azrithromycin 250MG/Day
Aciphex 20MG/Day

My stomach hurts just thinking about it..... Is this what others have done? Long term?
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scorpio1960
Veteran Member
Joined : Jan 2009
Posts : 914
Posted 4/9/2010 8:27 PM (GMT -7)
I was on Azithroymycin 500 mg 1 x per day, Minocycline 100 mg. 2 x per day and Mepron 2x per day for close to a year while also doing IV Rocephin (7 months) and then IV Doxycycline (2 months) in addition to probiotics and a ton of supplements. I did take a few short breaks from all meds. I'm now on oral Rifampin 300 mg. 2 x per day and Minocycline 100 mg. 2 x per day and my stomach is still doing quite well. Too bad the rest of me wasn't...lol! When my stomach would occasionally act up, I would take one imodium (pill form) and within a few minutes I woud be fine.

Make sure you take a good probiotic and hope for the best. You might do better than you think...I hope so. I'll keep my fingers crossed for you. Good luck!
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Razzle
Veteran Member
Joined : Aug 2007
Posts : 4415
Posted 4/10/2010 8:19 AM (GMT -7)
Scorpio,

How much IV Doxy did your doc have you on? I'm at 200mg/day right now (slowly got to this dose from 100mg every other day) and wondering how much I really should be getting... Also, did you get any side-effects from the IV Doxy?

Thanks!
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scorpio1960
Veteran Member
Joined : Jan 2009
Posts : 914
Posted 4/10/2010 8:33 AM (GMT -7)
Hi Razzle, I started off right away on 100 mg. 2 x per day. I believe I did this for 8 weeks before the insurance cut me off...ugh! The dose was never increased to more than 200 mg. a day and I don't think there was ever any plans to do so but I'm not too sure. I didn't seem to have any side effects at all but then again I'm dealing with so many darn symptoms I'm not sure I would even know if I did...lol. Good luck!
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Razzle
Veteran Member
Joined : Aug 2007
Posts : 4415
Posted 4/10/2010 9:45 AM (GMT -7)
Scorpio,

Thanks for your reply - it does help. Take care,
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springsjean
Forum Moderator
Joined : Mar 2009
Posts : 2173
Posted 4/10/2010 4:18 PM (GMT -7)
Betterhealth, could you please email me with the name and location of Dr. C.  I would greatly appreciate.  I have hit a brick wall with infectious disease dr. and just found out have cnetral nervous system lyme.  I am in NJ and know I need to start looking for a new dr.  Is this LLMD into as many alternative treatments as it seems some LLMDs are.   Did he accept insurance?  Did he seem like a caring dr.?  Thanks so much and feel better!
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betterhealth
Regular Member
Joined : Mar 2010
Posts : 230
Posted 4/10/2010 8:09 PM (GMT -7)
Hi springsjean,

I just emailed you Dr. C's contact information. I was able to get an appointment with him pretty quickly. Let me know if you decide to work with him.
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springsjean
Forum Moderator
Joined : Mar 2009
Posts : 2173
Posted 4/11/2010 6:13 AM (GMT -7)
Betterhealth, for some reason, I did not get email. Can I bother you to send again to springsjean@aol.com. Thanks so much.
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betterhealth
Regular Member
Joined : Mar 2010
Posts : 230
Posted 4/11/2010 6:47 AM (GMT -7)
springsjean,

No problem.... It has been sent to your aol account. When you get it, click on the email link to get the info about his practice.

Good Luck!
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Kodak
Regular Member
Joined : May 2010
Posts : 74
Posted 5/19/2010 7:20 AM (GMT -7)
betterhealth,

I'm in NY also. Can you please email me your LLMD name and info too? (wolfieone@optonline.net)
I'd really appreciate that.
I think I saw Dr R. Can you email his name and town too? I want to see if its the same one.
I'm thinking of going back to him. He did alot of testing, which I liked. It was just hard to get
appointment to see him. BUt he is right up the road from me.

Thanks so much!
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betterhealth
Regular Member
Joined : Mar 2010
Posts : 230
Posted 5/19/2010 4:22 PM (GMT -7)
Kodak,

I emailed you the information that you requested.

Gary
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frikandfrak
Regular Member
Joined : Jan 2010
Posts : 22
Posted 5/27/2010 10:13 AM (GMT -7)
hi,

would you be able to tell me you docs name also, i live in nj and was thinking of getting second opinion for my son, he has total neuro lyme. If you want my email just let me know

frikandfrak
thanks
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betterhealth
Regular Member
Joined : Mar 2010
Posts : 230
Posted 5/27/2010 3:19 PM (GMT -7)
Hi frikandfrak,

Please email me at betterhealth@healingwell.net and I will reply with the info that you requested. Sorry to hear that your son is having such a tough time, I can definitely relate to all of the neuro issues. I hope that your son starts to see some improvement soon.
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