fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
So my Dr walks in and tells me he doesn't know what to do with me. Since I am still so symptomatic and my cd-57 is still at 22. He took me off the Suprax and Biaxin and put me on Monodox and I started bicillin shots, which I will do weekly.
He says he doesn't think I have Bart since I am IGG but is keeping me on the Rifampin anyway!!!!! I am so upset ! He says no Babs either !!
Rifampin, bicillin once a week and monodox, because I have Anaplasma IGM. He says he would try IV but my insurance would never cover it !!!
Is this going to work ?
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
| IP: Logged |
fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Is there something besides Monodox I could take in the summer for the Anaplasma?
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
| IP: Logged |
The key to effective treatment of these organisms is early suspicion and treatment for at least 28 days. The most useful antibiotics for treating Ehrlichia/Anaplasma are doxycycline (100�200 mg twice a day) or rifampin (600 mg once a day). In difficult or resistant cases, I have used a combination of both drugs with very good success.
Posts: 749 | From State full of ticks | Registered: Dec 2008
| IP: Logged |
fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Geo, Thanks, but ....I want to cry, my summer will be ruined. I was on Doxy for 4 months already ! My kids deserve a summer, its bad enough this thing has their Mom. I HAVE to be in the sun with them.
If the Rifampin will hit it then why add the doxy now?? ? Maybe I can add it in Sept?
He tried to give me an antidepressant for my pain, I refused.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
| IP: Logged |
Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Weren't you just herxing on Rifampin? Your symptoms sounded a lot like Bart. It's very uncommon to not have co-infections. Rifampin also hits Lyme so he could be using it for Lyme also.
I would trust your gut and ask to be treating for what you show symptoms of.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
| IP: Logged |
posted
My doctor (you know) took me off doxy and replaced with bactrim for the summer due to the sun sensitivity. Don't know if that would be an option for you? Not sure what the interactions are between the antibiotics. Wish I could help more. I also have refused to even take an advil as I would rather suffer with pain and stiffness and know what's going on in hopes that one day it will all be gone.
Posts: 749 | From State full of ticks | Registered: Dec 2008
| IP: Logged |
scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Maybe it's time to find a new doctor who can give you a comprehensive plan. I would not waste my time with a Dr who throws up his hands b/c he doesn't know how to treat me! That's was exactly what happened to me.
My LLNP was only treating me for Lyme and Bart. But for 12 months I got significantly worse. Then she tried to put me on Bicillin injections and ended up ordering the wrong type and wrong dosage! It was then I realized I needed a Doctor w/ more experience and more knowledge about Lyme.
Bicillin once a week is not enough... you need to be on it 3-4 times a week and make sure it's the LA and NOT CR form!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Just want you to know I'm thinking of you and sending hugs your way.
God bless you.
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
I am so tired right now, not sure what I am going to do. I am sure this is all a rifampin herx. Why he wont admit it is beyond me. I thank God for my family and all of you. Thanks for the advise, hopefully my head will be clearer tomorrow after work and I can take control of this situation.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
| IP: Logged |
fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Will the bactrim hit Anaplasma ? I
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
| IP: Logged |
posted
From what I read, no, but the rifampin would. I was thinking that maybe the bactrim could replace the doxy for the summer and hit the lyme, but, not sure if bactrim and rifampin can be used together. I was always on them separately with zith.
Posts: 749 | From State full of ticks | Registered: Dec 2008
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Bicillin will mak eyou exhausted! Usually you should take bicillin 2-3 times a week
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Maybe he wants to start slow. If it means I have a chance at remission I will take it.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I hate to say it, but your dr doesn't know what's what here. You need a much more knowledgable dr, as someone else has pointed out.
Unless you are extraordinarily sensitive, once a week Bicillin is NOT enough. And why would you just assume that your insurance won't pay for IV? Why not try for authorization?
On the anaplasma, I wouldn't take doxy in the summer, if I were you. Not unless you are willing to live like a mole. I did one summer, but it was tough, and I don't have kids. Last summer, I elected to wait until the summer was over to go on doxy for Ehrlichia.
And he says you don't have Bart because you are only IGG?!? That's crazy. You're lucky that you tested positive at all. Get yourself a better dr ASAP.
I just saw your signature. Your insurance turned you down for more than a month of zithromax?!? Appeal that! Don't take this stuff lying down! That's what they count on, patients giving up and going away. Don't.
Posts: 3792 | From around | Registered: Mar 2008
| IP: Logged |
posted
It seems so irresponsible for him to NOT give you an antidepressant. Cymbalta has helped me tremendously with the pain of arthritis and in your current state of emotion...I've been there and would never feasibly be able to deal with any sort of healing until I got that under control.
I'd go to a psychiatrist, personally, b/c I have a good one. One mention of Lyme disease and he was completely sympathetic and helpful. Get your own anti-depressant and let the LLMD deal with the rest, though it does sound as though you need a new one, or get tough with this one.
Posts: 42 | From St. Louis, MO | Registered: Aug 2010
| IP: Logged |
fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Thanks for all your help all.....Update on me, I am fine...better than I have felt in a while...no severe fatigue and no depression. I am glad I went with my gut. I have more energy again and the head pressure has lessened significantly. No antidepressants for me, its not that bad.
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
| 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/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic