posted
First visit went really well . 90 mins long and not one min. wasted .
He looked over my Igenex report and my symptoms list and told me I must have a very strong immune systom . That day at least I could walk without my wifes asistance.
He is very informative and very specific about dos and don'ts . I started treatment last weds.
Put me on oral meds , 1st doxy , 2nd ceftin , 3rd zithomax , 4th flagil . As long as all goes well will see him next on Nov 4th.
I must have a herx going already . I think this is going to be the worsed thing i have ever been through .
That's saying a lot after what the passed 3 years has been like . BILL
-------------------- Wishing us all well ! Posts: 99 | From Southern Illinois | Registered: Feb 2010
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Wow.
That is a heavy antibiotic regimen to start with.
Hang in there.
Drink lots of water.
If the herx becomes to much, call your LLMD.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
First of all, you are soooo lucky to be seeing an LLMD. I am going to be calling Dr. C today. Although he is pretty far away from me and probably doesn't take Medicare, I heard he was the BEST.
I am only on my first dose of anti's from the Rheu. that diag. me with Lyme. She put me on 100mg Doxy. 2 x day which I have learned is not near enough for the late, late stage I am in. I only have one week of Doxy left. I have to act fast today to at least get some anti's from someone!!
I had the Western Blot test, and was positive in 3 bands. Do you know if I need to have the Igenex done also.
I have a page long of years of diagnosis, Lupus being one of them.
Now I get Dx. of Lyme.
I'm ramballing (sp?) on.
I wanted to say good luck to you and so glad to have a LLMD to care for you.
Sick in St. Louis.
-------------------- Sick and Tired of Being Sick and Tired!! Posts: 153 | From St. Louis, Missouri | Registered: Jun 2010
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
it's not a heavy regimen. He does one drug per month, not all at once. Though, any one drug can be rough. Just wanted to clarify. That's sure a familiar list.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Bill I found the electrolyte drink mixes helped me a lot.
Like the ones they sell for vomiting and diarrhea.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I don't see how a doc can tell you your complete protocol like that after just one visit; or go that long from first appt to second.
Shouldn't a doctor see you after a month or at least two, to see how you are doing on that particular antibiotic before moving to the next one?
I have seen this before where someone walks out of their first visit with a list of antibiotics to take for the next 6 months. But I don't see how you can treat each person on an individual basis without monthly or bi-monthly follow ups. Do you have phone consultations in between?
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
Glad you're all set, Bill!! Yes, this will be the worst thing you've gone through. Just keep on keepin' on and do what the doc says to ease the herxing.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
WildCondor
Unregistered
posted
Can you list the doses please. The meds are one at a time, correct? One month each?
IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Lymetoo, my ID doc had a good quote for me one day (and you can guess how much I love ID docs..lol). He said, "10 doctors, 10 different opinions." That's the way life is.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
WildCondor
Unregistered
posted
Lymetoo...
I'm asking a question that I ask almost everyone to try to help this poster. Nothing here is bashing Dr. C. If the doses are too low then yes I will probably acknowledge that and offer advice which is what this forum is designed to do, help people. Each individual needs the educational information and patient feedback, both positive and negative in order to be able to make their own personal health decision. I am not out to sabotage your doctor here, just want to see people get well and move on with their lives.
IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by Lymetoo: and 10 people, 10 different opinions
This is why everyone should check with their doctor after getting ideas and support here. None of us are MD's, so our opinions should just be taken as our experience.
Wild Condor got better on high doses, Lymetoo on low. I did high dose followed up by alternatives. Every body is different, and everyone should remember that and discuss any treatments with their MD.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
WildCondor
Unregistered
posted
And I was just saying to TuTu that the 10 different opinions and the feedback is exactly what makes Lymenet and this kind of community so valuable.
IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I am getting better on low dose treatment; but have been on moderate doses also.
My main concern was that you don't have monthly or at least bi-monthly follow ups; but if it works for you that way, thats great and could save money.
I don't like the one standard protocol fits all kind of approach; but that is just my opinion.
The main thing is that YOU trust your doctor! Getting opinions here is a great resource; but in the end your doctor should be the one that you ask; as he is the one with the medical degree and experience and the one you chose to trust.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
posted
bill your in good hands just follow dr c's direction and he will get you well again. the man has taken me from 57 wicked symptoms down to two remaining since december of 2007.
when I first started see him I was debating taking a disability pension I work full time and have only missed a few days of work while doing all the protocols he mapped out for you !
in this case tutu is 100% right he is in my opinion one of the best llmd's in the business ! he is little cautious but he will get you well !
teri and laura your both friends of mine so quit smacking on my llmd ~pj Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
| IP: Logged |
posted
Dr. C has seen thousands of patients who have gotten better. He's been treating TBD patients since the late 80's, There are treatment guidelines out there and that's exactly what they are guidelines. There are no documented definate treatment protocols.
Posts: 383 | From Ar | Registered: May 2007
| IP: Logged |
WildCondor
Unregistered
posted
I was never attacking anyone's doctor, or looking for some kind of argument. If you read the posts above in no way do I attack anyone. To the patients asking questions about Dr. C, Make sure you get feedback from the patients who have left Dr. C upset as well as those who are happy with him. Due to circumstances and biases on here, you will have to do your own private investigation to gather the info you need to make the right choices.
FYI to correct Sixgoofys statement about how I got better above...my treatment was not "high dose" it was normal and adequate dosing for treating neurological Lyme disease.
IP: Logged |
posted
This website is my resource for information. I have never read in the past 2 1/2 to 3 yrs I've been reading this site any post that has expressed any thing but good experiences with Dr C. If there have been upset patients please present those posts or give me the information I need to read about it.
Posts: 383 | From Ar | Registered: May 2007
| IP: Logged |
WC... you didn't attack him. I prevented that from happening. You wouldn't have attacked HIM, but attacking his protocol is basically the same thing in my book.
How about all the people on your Facebook who are getting well under his care?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
WildCondor
Unregistered
posted
Zil,
It would be great if all the feedback good and bad about Lyme doctors could be shared here for everyone to see and to help patients make a decision about a doctor. However, this is Lymenet's site and it is against Lymenet's rules. Lymenet only allows positive feedback. If anyone posts anything negative about a doctor treating Lyme disease it will get deleted. LN states that the reason for the one-sidedness is to protect our doctors. It does however create the problem of a one sided bias in that you are only getting one side of the story, at least on the public forum. So for posters like myself who have collected valuable feedback to share, we are not allowed to share it, so we have to say as much as we can while at the same time trying to be respectful of the rules and other patients who have no place else to turn at the same time. It is a delicate balancing act between helping and being supportive while at the same time trying to provide ALL the feedback without hurting people's feelings. Sometimes people feel attacked or offended regardless which should not have to be the case, but given the rules and circumstances it does happen. It's not easy!
IP: Logged |
posted
I agree it would be great if all feedback could be shared. Cautioning people to investigate the patients who left the Dr upset is irresponsible unless you can direct them to the information. You are not directly attacking anyone but you are indirectly implying some negativity. You have posted numerous times in the past about this Dr seems to me the bias is yours. Do a search on your posts.
Posts: 383 | From Ar | Registered: May 2007
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I am closing this thread.
All feedback can be shared via PM. In the public forum, we don't share negative feedback or anything else that can hurt the doctors willing to treat us.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
Topic Closed
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
First visit went really well . 90 mins long and not one min. wasted . 
![[Frown]](frown.gif)
![[Big Grin]](biggrin.gif)
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic