I have been in treatment for two years and just when I think I am getting better(symptoms die down for a week or so) then WHAM and they are back. I have Bart and Lyme and have for 20 years but was not properly treated until 2 years ago. I have been on alot, now on Doxy and Zith for the last month and a half. My main symptoms are constant dizziness and twitching. The twitching was almost gone and tonight is worse then it has been in over a year...and the dizziness almost gets better and then comes back. I have brain lesions that have gotten smaller and was told originally that I had MS. Even though I caught the tick that bit me and had the EM rash I think the MS thing scares me to tears, that maybe that Duck was right. Does anyone have any thoughts on all of this...I would so appreciate it. Spent the day crying. Thank you ever so much.
Posted by Parisa (Member # 10526) on :
lalyme,
You know over on the roadback site there was a discussion about how any type of setback can cause you to sort of go into a tailspin and think "oh, no" the monster's winning. This symptom has come back and from here it's all downhill. This came from patients who were very improved or in remission.
So, it's obviously very common to feel upset when you have symptoms that come back.
Keep trucking on. You'll get there one way or another.
Posted by troutscout (Member # 3121) on :
What? 20 years of infection before treatment and you expect to be 100% after only 2 years of abx.
Be serious (laughing here).....hey, it took over 30 years before I got treated and finally after 4 1/2 yrs on abx....18 months of IV...I am KINDA normal.
It'll wax and wane. Enjoy the good times...stick with it.
Soon it will all come together. Trout Posted by lalyme (Member # 8964) on :
Thank you both so much. I think it can sometimes overwhelm and fear and all of it...It's very reassuring to hear that...Is there something in your treatments that made the biggest differences? Or was it trial and error and continuing?
Posted by TheCrimeOfLyme (Member # 4019) on :
Be patient, be very patient and keep on treatment. Do you take anything for yeast?
I got SICK in 2002, but I have no clue when I got bit. I didn't start treatment until 2003 when "I" figured out what it was ( doctors had a year... darn quacks).
I am in my FIFTH year of treatment, but I can live and do mostly everything I could before.
My new LLMd just discovered an erlichia infection ( brightly positive and from quest) just in 2008 when it kicked off, which is probably why I am still sick ( but believe me, no where like I was).
I had the chronic dizziness for six months straight. It was heck. I can sympathize. I actually used sea silver, olive leaf capsules, amoxicillin, b12 AND diflucan to combat that. It left VERY quickly on that combination ( two weeks- and I had had it for six months).. It never came back.
Wishing you good luck. It has been SO much trial and error for me yes. I believe the only antibiotic I haven't tried is rocephin and ketek LOL.
Posted by lymebytes (Member # 11830) on :
I have found magnesium citrate to be very effective for muscle twitching, I found a powder form that works MUCH better than pill form.
Also, you might benefit from Methyl b-12 shots. I did but it took tiimmmeee..not an overnight thing.
Have vitamin D levels checked as well, as most w/LD are deficient, don't take D until you have blood tests.
Biaxin, Zith (macrolides) are being found to be more and more effective for Bart...this with Bicillin shots may be helpful.
Hope you feel better..by the way, I have treated 2 years as well...Biaxn cleared Bart took over a year though - Bicillin shots I've found also helped me progress, I did them 2 months and then did them again 5 months...I am off them right now, but going back on them soon.
According to ILADS chronic LD can take 1-5 years to treat. One famous LLMD says all MS is, is "untreated Lyme"...some believe it is another disease entirely.
I also was woried about MS when I first went to an LLMD he said, "No, it isn't MS, Lyme is MUCH worse than MS". I saw a 2nd LLMD and asked the same question, could I have MS? His answer even more shocking, "SORRY - no this is Lyme!". I no longer worry about MS.
Take care.
Posted by sick (Member # 9143) on :
Hey Parisa, I'm not on here much any more. I am not in treatment any more so I just don't feel like it but I wondered what the road back site was.
sick
Posted by lalyme (Member # 8964) on :
Thank you all very much. I am going to talk to LLMD about all of this and adding things like B 12 etc...to see if that helps.
Thank you again...I appreciate it so much.
Posted by njlymemom (Member # 15088) on :
I was misdiagnosed with MS too.
I just wanted to let you know that you are not alone.
When I am not making progress I sometimes wonder the same thing. Then I remember how sick I was bfore I started the abx treatment.
Yes, over 20 years for me also. It is going to take time.
I know how hard it is to hang in there or taking one day at a time. Sounds good but in reality it is overwhelming.
I have found the best combination for me are high dosages of ammox, biaxin and rifampin.
My lesions lessoned also with abx treatment.
However, I do have encephalitis. When I had my spect scan it came back "severe encephalitis".
What has been the hardest with all of this so far is listening to what my body is saying.
Knowing when what you are feeling is a herx, needing to detox, or if symptoms have truly worsened and treatment needs to be changed or adjusted.
Add to this the coinfections and all the possiblilities of combinations of infections, who wouldn't doubt themselves at times.
It is a fine line.
Even the most practiced of us will panic when we feel ourselves sliding back.
Wishing you wellness.....
Posted by Parisa (Member # 10526) on :
Sick,
The roadback site is www.roadback.org, a site for antibiotic treatment of autoimmune disease
lalyme,
My husband is the one that's sick. I'm just the one caught in the crossfire.
Anyway, he's been sick for almost three years now and started Lyme treatment a little over a year and a half ago.
He's just starting to see improvement and will make offhand comments about hoping it will last. He's prepared for the complete downhill slide which I guess on one hand is realistic but on the other hand drives me nuts.
Posted by Lymetoo (Member # 743) on :
Yes, make sure yeast is a non-issue. And try a good quality magnesium. Maybe you're not able to absorb magnesium??
Hang in there!! We care! Posted by lalyme (Member # 8964) on :
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