posted
Hey Everyone, I haven't been on in awhile as I was feeling Great for the past 4-5 months. I was pretty much symptom free 2 weeks after finishing my IV Rocephin. I did have occasional dizziness and occasional joint pain, but it was short lived and didn't bother me. Life was GOOD! However, now starting several days ago I've been so tired and then starting yesterday A LOT of my symptoms have come back. It's like someone turned on a switch and just like that I feel like crap again. I'm really dizzy/lopsided, achy, tired, and my joints are achy especially in my hands, feet, spine and shoulders. I'm still not as bad off as I was, but I'm scared I'm having a relapse . Why does this happen? My first bout of symptoms were in may of 07 and lasted several months with minimal symptoms. Then I went almost 18 months symptom free and then wham it hit me like a ton of bricks March of 09. I was really bad of this time and was finally diagnosed.
Does this sound like a relapse? And why am I prone to this relapse/remitting pattern? Anyone else go through this?
posted
ugh.. still feeling horrible. I'm so dizzy and disoriented feeling. Like I'm in a dream and can't wake up or something. Hate it. Starting to worry about MS again because of my relapsing/remitting pattern But I've had clear MRI's and pass my neuro exams.
I'm so sad and frustrated right now. Don't know what to do.
My LLMD has moved so now I need to find a new dr. Unfortunately there aren't many in the UK and I hate to 'start over' with a new dr. So, for the time being I'm taking some of my left over antibiotics from last time. Amox and zith 4 days a week and the flagyl 3 days a week. This is what I was doing before.
Does anyone else have the relapsing/remitting lyme. OR is it possible I keep pushing it dormant with the treatments, thus feeling better. Then they eventually come out again?
posted
There are others here who know so much more than I about what could be happening, I just wanted to give you a response because you sound like you need a friend.
The Lymenet website has been down for days and it has been frustrating as heck. I lept for joy this morning when I finally got on. Maybe that could explain the lack of response?? Not being a techie at all I have no idea if it was just us in the states while those in the UK could access the past 4 days.
In my newbie opinion, if it feels the same it probably is. Good luck I hope you connect with the first doc you see....and soon!
Posts: 42 | From Northeastern US | Registered: May 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I relapse EVERY fall! I think I am nearly well, get my hopes up that it is time to quit abx and then WAM! So you are not alone. That is what this disease does to us. It is very typical to get worse in fall. One LLMD will not let his patients quit abx, even when they have been symptoms free for months, until spring because the fall and winter are the worst times for many of us.
You probably should go back on your abx. You might be able to consult with your previous LLMD via telephone and maybe he could suggest a replacement LLMD or even call in refills on your old prescriptions.
Don't shrug it off but don't let it get you too scared either. You don't have MS. It sounds like you have a very strong immune system and you will get it under control soon. You should stay on abx for several months after all of your symptoms have disappeared completely. It is easy to feel better and just ignore and dismiss the remaining symptoms, quitting the abx too soon. I have done it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You were almost symptom free for two weeks but only after you stopped meds? You might not really have a pattern of relapse, but a pattern of stopping treatment too early.
Or were you symptom free for months on IV? I couldn't tell from your post.
Read the Dr. B guidelines. They state that you should be symptom free for two MONTHS before you stop meds.
I would find another doc and start back on treatment. Don't feel like it's time wasted .... Dr. B treated himself by going off meds and letting the bugs come out again, then slamming them again. It's not a bad way to treat, but you do need to treat more.
It seems most need to follow up IV with orals.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks for the responses. Sixgoofykids, to clarify...I got better about two weeks after finishing my IV ROcephin. I felt really good for 4-5 months except for ocassional random dizziness or joint pain.
My LLMD took me off my abx and put me on many supplements to boost my immune system. I was also put on Plaquenil for remaining inflamation and fatigue by a differnt doc (not my LLMD). I think it helped.
I did call my LLMD office yesterday and he called me back, but I missed his call. He said he would do a phone consult with me so I'll give him a call this afternoon.
IN the meantime, I'm taking some left over abx from before. I hate this feeling of spaciness and dizziness. It drives me crazy!!! It was so nice for those several months when I felt human again and could think straight!!
Do you think it will be easier to treat this time? Atleast now, I'm not feeling AS hopeless as before cause I know it is possible to get better. Hopefully i can kick it again!
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
So, did you only treat for that 4-5 months total?
It appears by the number of + on band 31 that you've had it a long time. Hopefully, it will be as easy to get it beat down and have you feeling good this time as it was last time.
Many find they need to follow up IV with oral abx before they can totally get off abx.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
kareamber,
I went 18 years with relapsing remitting illness that the doctors could never figure out. 3 years ago it came to stay (hasn't remitted).
And i Definitely have TBI. WB CDC positive with 9 bands....
and as Six has mentioned, with all of those +++'s on 31, my result as well, you've probably been infected for a very long time.
If I were you, I'd get back on the abx asap...before this monster decides it isn't going to leave .
Good luck!
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Six, I started treatment in July of 09 and continuted with treatment until March of 10. So I was continually treating for atleast 8 months. After the IV I quit all antibiotics and felt so good for 4-5 months. Does that make sense now?
SO the band 31 represents how long you've had the disease?? I've been having symptoms on and off for several years now.
I hope it doesn't stay
I am taking abx I had left over from before (yes, they are still good). I'm taking the same protocol my LLMD had me on. 4 days amox and zith, and 3 days of flagyl.
I feel like CRAP!! My brain feels like MUSH. Those little monsters have really settled in my brain I think. That is by far my worse symptom... dizziness, brain fog, and disorientation. I hate it! My joints are achy and muscles too
Thanks for the advice everyone. I truly appreciate it.
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I had remitting relapsing CFS for 7 1/2 years before I was diagnosed and treated for Lyme. My body would throw off the infection, only to return with a vengeance, staying longer each time.
Then, it just stayed. That's when I found I had Lyme and got it treated. It was a series of relapses and recoveries, but eventually the relapses became shorter and the gains longer.
You may have to stay on oral abx for awhile, but you won't go back to where you were.
Good luck.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
So does the body relapse because the infection was never truly gone, but just hiding, and when it finds a chance to attack it comes back? (meaning, the immune system is compromised for some reason?)
Posts: 256 | From Texas | Registered: Jun 2010
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. Why does this happen? My first bout of symptoms were in may of 07 and lasted several months with minimal symptoms. Then I went almost 18 months symptom free and then wham it hit me like a ton of bricks March of 09. I was really bad of this time and was finally diagnosed. 
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