I was ill for 5 months when I found an LLMD in MO and visited him. Immediately, my symptoms went away (within weeks). He kept me on the abx. for a total of 3 months.
After, I was my normal healthy ME. Work out, eat well...busy life.
Out of nowhere, complete relapse(after 4 months off abx.). Literally from completely healthy one day to completely ill. This was 3 weeks ago. I've been in bed almost all of the last three weeks.
Now, daily fevers, sore throats and unbearable joint pain. I started Abx. I had a herx. I'm back on abx. I will add in Flagyl to the amox. next week.
Questions in my mind:
1. Why would my LLMD stopped after 3 months? Is it simply because all my symptoms really went away (which they did)? I was so happy to be done and he said, "people who respond as well as you, I generally never see again"
2. Does this mean I am probably always going to go through this? I figured I was done but now I realize I may never be done.
3. I have 3 small children and I home school. Is there really a good chance of things getting back to normal on a regular basis? Right now, we are barely functioning.
4. LLMD now says probably 4-5 months to go through his abx. protocol. Is that realistic?
5. Are most of the people on this board functioning well with just Lyme symptoms that get in the way or are most people as ill as I am feeling year after year after year?
Blessings to all of you,
Lily
Posted by laura j (Member # 14257) on :
Lily,
From what I've read on here, I believe you need to treat until symptoms completely go away and then 2-3 mos. on top of that. Can someone else confirm that?
Posted by Lily (Member # 13158) on :
Yes, that's what I always read and was told by LLMD. My symptoms were gone in 1 month...seriously. It was amazing. We continued with the same abx. for 2 additional months.
Lily
Posted by Aniek (Member # 5374) on :
Lily,
Can you think of anything that might have triggered the relapse? A stressful incident, possible reinfection, food poisoning, the flu or a cold?
Posted by CD57 (Member # 11749) on :
Lily, sounds like a possible co-infection. Did your LLMD treat you for babesia, bartonella, and erlichia, or just Lyme?
Posted by Lily (Member # 13158) on :
We could not come up with anything that would have triggered a relapse. I was feeling amazing. The only thing in question in my mind was that my whole family (minus me) got a bad cold of some sort. It was floating around for 3 weeks. LLMD said that this would not be the cause.
I was treated last time for Lyme and I wsa on Doxy and amox. for my treatment. LLMD said that the Doxy covered a couple of the co-infections.
Now he says either it was in its cyst form and came out or we are dealing with a co-infection.
Lily
Posted by bettyg (Member # 6147) on :
i'm just getting over awful BRONCHITUS COLD VIRUS that hit me and flattened me for 2 weeks; any chance it might be this for you?
Posted by trish4 (Member # 14156) on :
I went undiagnosed for 3 years. Finally found out I had lyme and went on low dose antibiotics (well low dose compared to what Im on now) and all symptoms went away. I felt great! My 3 years of suffering were gone in only a weeks time of antibiotics.
However, this didnt last. 3 months later (still on the abx) I started going downhill, and now Im even worse than I was before starting abx.
I switched LLMDs because I wanted more aggressive treatment and thats where Im at now. So I guess we're all different in how we respond to lyme and treatment.
Posted by nclymelife (Member # 15276) on :
Lily,
I have been on 1 month of Oral Anti biotics and have not had much relieve i am now going to see a doctor for more evasive antibiotics possibly IV. my doctor told me not to stop any treatment until i was symptom free for two months. I had also read this in all of my research. I am so sorry and hope you can get it back on track.
Posted by lymeladyinNY (Member # 10235) on :
Lily, a month ago I had a mild flu-like illness. I believe the stress of this illness caused bartonella to reappear, after I thought I'd beaten it.
I have been in misery and bedbound for two weeks now and all the symptoms point towards bartonella.
What I'm saying is, possibly you relapsed because of the cold that you were exposed to, even though your LLMD says not. Just a thought.
- Lymelady
Posted by sixgoofykids (Member # 11141) on :
Lily, your LLMD did it right the first time ... two months no symptoms get off abx.
However, I would have tried a cyst-buster before going off abx since the abx could have just pushed it all to cyst form.
I would highly suspect a coinfection. It could be bartonella ... I've read that it can cause fevers and a sore throat. The drugs you were on would not have covered it. Look over the bart symptom list and see what you think.
I have times I'm in bed a lot and times I'm fully functional. I'm getting more and more functional days as the treatment goes on. You will have ups and downs. Don't let the homeschooling stress you out .... the kids will do fine even if you're not super-mom right now.
Posted by Lily (Member # 13158) on :
quote:Originally posted by bettyg: i'm just getting over awful BRONCHITUS COLD VIRUS that hit me and flattened me for 2 weeks; any chance it might be this for you?
No, my strange rash, joint pain, fevers, sweats, chills...they are all back.
It looks much like the Lyme looked last year
Lily
Posted by Lily (Member # 13158) on :
What I'm saying is, possibly you relapsed because of the cold that you were exposed to, even though your LLMD says not. Just a thought.
So, do people often relapse simply because they are exposed to a virus? Oh my..I can't even imagine with my little ones and all of their little friends.
I hope that will not be the case!
Lily
Posted by Lily (Member # 13158) on :
quote:Originally posted by sixgoofykids: Lily, your LLMD did it right the first time ... two months no symptoms get off abx.
However, I would have tried a cyst-buster before going off abx since the abx could have just pushed it all to cyst form.
I would highly suspect a coinfection. It could be bartonella ... I've read that it can cause fevers and a sore throat. The drugs you were on would not have covered it. Look over the bart symptom list and see what you think.
I have times I'm in bed a lot and times I'm fully functional. I'm getting more and more functional days as the treatment goes on. You will have ups and downs. Don't let the homeschooling stress you out .... the kids will do fine even if you're not super-mom right now.
Thanks for the encouragement. I want to think I was treated correctly the first time. I was more naive. I would definitely push for the cyst-buster in hind sight.
He is doing the flagyl now with me followed by babesia then bartonella treatment. At least that's the plan for now as given to my PCP.
I know my kiddos will be fine. It's just having them home all day when they are school aged (at least 2 of them are)and not doing their school work with them is difficult. I know we would have to put them in school or something if this goes on for an extended period of time. That, however, has never been our desire. It's a lot to figure out right now
Lily
Posted by TS96 (Member # 14048) on :
Lily, Just wanted to say I have three little ones all under 8 and homeschool as well. I am just finishing my 2 month of abx and really starting to feel good.
I haven't felt this good in many years so we're trying to play catch up with schooly stuff.
Get better soon and hit those buggers hard this time!
I also know I have Bart so I'm definitly gonna go with some cyst busters once I'm feeling good.
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