merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Hi everyone! I just wanted to let you all know that I had my 1st LLMD appt today. I am sooo relieved and grateful that LLMDs exist.
I am going to try to keep this short as I am feeling crummy tonight and there are alot of little details.
He diagnosed me with Chronic Lyme
I was put on 200 mg Plaquenil twice a day and 500 mg Biaxin twice a day for at least the next 3 months. At 3 months I see LLMD for follow up. He said that how I do and adjust it from there.
He thinks My Toxoplasmosis infection may have been playing a role in all of this and may add TMP/SMZ in the fall.
He told me that I can expect to be in treatment at least a year to a year and a half to start.
He told me it will be 1-3 months before I see improvement, and he said I will be feeling the effects of Herx reactions soon.
I met another Lymenet member there, but failed to get her screen name. Whoever you are good luck to you.
Now, If anyone who has been on these meds can tell me about the herx you felt with these meds? How soon did it start? How bad was it?
I have had a couple before so I know how bad they can be. I am happy to start the begining to the end of this horrid disease.
I have my epsom salts and peroxide and supplies ready to deal with the killing of thes bugs. My family is ready and on stand by. I am guessing day 3 is the day, time will tell.
Any info or suggestions about what to expect are appreciated. Suggestions for being comfortable also appreciated. Thank you to all of you. Posts: 3905 | From USA | Registered: May 2007
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I am also going to look into disability and work on it since I am in for the long haul. I am glad the meds are cheap.
Hopefully I can return to work someday.
Posts: 3905 | From USA | Registered: May 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
So happy for you! Isn't it a relief to find a doctor who knows of which he speaks??!!
Hope the road is only UP from here!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Merrygirl,
I'm so glad it went well for you.
I didn't take Biaxin, but I did take Zithromax and Plaquenil. The Plaquenil made me very very tired, so I ended up having to take it at night cuz it would knock me out.
The tiredness was a herx for me in the beginning, but after some herxing, I started to feel better.
Hopefully you will feel better soon, hang in there, and keep us posted.
posted
Merrygirl: I am so happy that you had a good appt with your llmd.
See the difference when you see a doctor who KNOWS lyme??
You totally feel understood and finally on the right path!! Good for you.
I also have to start that protocol in 2 weeks so I am also interested in the response from others regarding the herxes and/or reactions.
I am rotating Clindamycin/Quinine for ten days then switching to Biaxcin/plaqenil(sp?)
I just started the Clindy/Quin today.. So I am also waiting to see what happens.
How long have you been out of work?? I thought I heard somewhere that you had to be out of work for some amount of time before you could get disability/ss income. Good Luck to you on that too. Keep us posted. I think I need to do this too!
Take care, and drink lots of water!!! and let us know how you are doing.
Again, I am happy for you that you can begin to get better.
Sandra
Posts: 73 | From phoenix, az | Registered: May 2005
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
...just a note, the TMP/SMZ he may add in the fall is the same thing as Bactrim or Septra which has been a lifesaver for many of us.
If you do a search using those names you'll find out a bunch...If you aren't allergic to sulfa you may be pleasantly surprised.
Just my non professional 2 cents worth.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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bettyg
Unregistered
posted
WHOOPIE MELISSA! you made it there and it went well! great you 2 connected; helps so much.
my 1st llmd, i/others did NOT like his RN at all; she was so snippy, rude, etc.
keep a chart of all the symptoms you have while herxing so you can tell when they start/stop, etc. i didn't and wished i would have!
you could also submit your medical symptom notes to SSDI too!
yes, you can't file for SSDI BEFORE 6 months, but you have all this time to prepare a THOROUGH file with everything needed to be approved 1st step, 1st time!!
melissa, did i send you my newbie's package then? it's up to 60 pages now; 25+ are devoted to SSDI personal experience from me, Minoucat, Connie MC, and the disinissues web site full of GREAT STUFF!
i was on biaxin; i herxed but not sure if it was biaxin or doxy! my right arm felt like it was a punching bag for the entire 20 months i was on it; not pleasurable! good luck; you are now on the way to remission!
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am so glad you had a great visit and are
Going to start down that bumpy road to getting better.
Hang in there.
We're here for you.
I haven't taken plaquenil, but I've been on biaxin (500mg 2 x a day)
For about 40 days, minus a few days with the stomach flu.
Leaves a horrible taste in my mouth, especially at night.
Really dries my mouth out too.
Did your LLMD give you any Rx for yeast? Diflucan?
Watch that diet. Take your supplements and probiotics.
My biaxin is taken with malarone....Babs herx.
Increased sweating, headache, dizziness, air hunger, etc.
Let us know if you need anything.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Thanks for all of your kind words as usual.
It was a breath of fresh air to go there and he knew exactly (or seemed to) what to ask and was very kind. I am grateful.
I almost started to cry in the waiting room as I felt the pressure of my life riding on this visit.
What a crazy experience this has been for me.
His nurse was not there that day so I have no idea what he/she is like yet. Hopefully they are nicer now!!
No rx for yeast, (I have always been lucky so far) I have my probiotics and started those back up.
I also wanted to mention that my llmd and my pcp/ID duck have worked together on patients before so my LLMD seemed to be ok with the whole thing.
He made it seem like they were able to work together to some extent.
We will see what My ID duck thinks lol.
salydega I have been out o work a little over 3 months. Bettyg sent me some links so I can be prepared and if I am not able to work in 3 months I will
have all my "ducks" in a row. I am sure it is going to take me some time to figure it out anyway.
bettyg I have been keeping a diary of symptoms since my first hospitalization in june with all my symptoms and temps etc. I find it helpful so far.
I am going to take advantage of my pre-herx moments today and clean up and spend some time with my kids.
I am interested in seeing how the Bactrim may play out in the fall. I am kinda glad that we are holding off for now, as I feel a bit overwhelmed.
If it were not for you folks I would have never seen this doctor or started the proper tx. Thanks a million.
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Geneal how is the stomach feeling these days? Are you feeling better? I hope so!
Posts: 3905 | From USA | Registered: May 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi melissa, congratulations on your first llmd visit! Glad to hear that you are on the road to recovery.
I have not taken those, but will start plaquenil soon. Sounds like it has helped alot of people.
There may be some ups and downs in the year ahead -- herxes can sometimes make you question whether you are making progress or not. But, you will be! Be sure to get rest when possible and take all the good advice above.
Posts: 2557 | From home | Registered: Aug 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Good luck merrygirl..I am so happy you found a LLMD that can help you
Had to look up in my medical files but I did take plaquenil & biaxin combo & it was a very effective combo for me. Lots of herxing so make sure to drink lots of lemon water, get plenty of rest and take your probiotics.
Take care Dana
ps: long term plaq I had to get eye exams to make sure it wasn't effecting my eye sight.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Congratulations! It's wonderful to see a doctor who understands, isn't it?
Biaxin did cause muscle pain for me. I remember my legs killing me, particularly my thighs and hips.
You do want the eye exam for Plaquenil if you think you will be on it longterm. I have been on it for 3 years, I started it with Biaxin and never stopped it because it reduces my stiffness and pain.
The exam is a visual fields test to make sure you aren't losing your peripheral vision. The side effects are something that happen after years on Plaquenil. But if there is a chance you will be on it a while, then you want a baseline test.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Congratulations!! I'm so glad you are pleased with your LLMD!
Do watch your diet now that you are on long term abx. You REALLY don't want to add yeast to your list of problems.
What did he say about the fever? Does he think the Biaxin/plaq will take care of it??
Did you ask him about babesia treatment or the possibility that you have it??
Get some rest! I'm sure you're tired!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Y A Y ! ! ! !*_)!*)*)! !*)!*)!*)!*)!)!*)!Y A Y ! ! ! !*_)!*)*)! !*)!*)!*)!*)!)!*)!Y A Y ! ! ! !*_)!*)*)! !*)!*)!*)!*)!)!*)!Y A Y ! ! ! !*_)!*)*)! !*)!*)!*)!*)!)!*)! GREAT NEWS*)*!)*)!!!!!!!!!!! Y A Y ! ! ! !*_)!*)*)! !*)!*)!*)!*)!)!*)! ! !*_)!*)*)! !*)!*)!*)!*)!)!*)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I made an appoint with an eye doctor to check out my eyes.
I am watching my diet as much as possible.
I actually felt decent today. Pain is down to a 3 out of 10 ehich is great. Maybe the calm before the storm??
The meds make me more nauseated, but I have meds that help that too.
So far so good. Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
Dustin has been on Biaxin for quite a while, he has been on Plaquenil for 2 months now and has seen improvement. He has not had any problems with either of these drugs, that I can figure are due to these meds anyways. He also takes Minocin and Rifampin. Just got bloodwork back today from last week and the dr says he is pleased and told me to keep doing the same thing. Dustin is currently have stomach issues and severe back pain, which just started about 4 hours ago, so not sure what that is about, although, some stomach bug is going around. So I hope this combination works for you as well as it has been working for him. He was put on Bactrim last year, however, he is allergic to it (sulfa drug- I am allergic as well). So can't help you with that, other than I know or LLMD really wanted him to take it, but it just didn't work out. Good Luck- by the way how did the Birthday party go?
posted
The plaquinil can (but only veeeery rarely) affect your vision. It's know ocular problems are, macular edema (you'd notice distorted vision), color vision changes, optic neuritis, and/or what's known as "bull's eye retinopathy" from the changes in the pigment to your macula. Most all are very rare and reversible.
Make your yearly appointments, but don't stress abou t the potential eye effects.
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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bettyg
Unregistered
posted
bob, it's wonderful having an optometrist as one of our members sharing what to look out for, etc!
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Thanks everyone! sonwithlyme the party was a huge sucess! I paid the price though. I couldnt walk that night and the most terrible pains the next day.
That day was my llmd visit and he got to see me at my most painful times.
I am glad that people have had luck with these meds. I feel realy tired today. Mild soreness. I think this may be the beginning of my herx as I have not been this tired in a long time.
thursday am will mark 3 days of meds. Any thoughts?
My temps is down to 99.1 this am and 100 now. It may be on the rise as I feel a bit flushed, but this is practically a miracle.
Do you think that the Plaquenil is helping with the fevers and pain? seems a bit early.
eyebob Thanks for the eye advice!! Makes me feel alot better, but I might as well get them checked out as I had optic disc issues in the begining. I think that was what it was anyway lol.
thanks guys melissa Posts: 3905 | From USA | Registered: May 2007
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posted
Hey there!! I'm the one you briefly spoke with at the doctor's office. Sounds like we are on the same treatment. Since we share the same doctor, might be nice to share our experiences with the meds. etc. If comfortable, feel free to give me your email address here....I'll check back!
I read your post about your kids....spoke with my pediatrician and although she isn't concerned, she agreed to run the test. Pushed my luck when I asked for the western blot but she agreed again....I'm with you, why would we want to chance this happening with our kids!!!
Kristin
Posts: 561 | From mass | Registered: Jul 2007
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