I haven't been on for a while and thought I would give update. I have now been on antibiotics for 7 months. My last Lyme Titer was negative but on the high side of negative which was 61. Dr. D. said he would like to see me at a 7. He has reduced my Ceftin to only 1 pill a day for the next 3 weeks and see how I do and then give it one last puch with Doxy for a little while. My immune system is slowly starting to come up but since I have been down to 1 pill I am started to get a little phantom pain and I am still twitching a little bit. I want to ask someone if my Lyme titer is negative then why am I still having pain. Its not bad but it can hurt a little worse at times and then goes away. Am I to expect this or is it coming back again. Dr. D. says if it feel like it rearing its ugly head again that I am to bump up my Ceftin as I see fit during this trial period. I am so frusterated! I want off all of these darn pills so I can have a baby but the pain won't leave me all together. Must I be patient and hope that a last punch of Doxy will kick it in the teeth? Does anyone have any advice for me?
Posts: 204 | Registered: Jan 2005
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posted
Well, I have not done the titer thing, but I can tell you this: if you are cutting back on abx and the pain returns, then it's time to kick the abx back up.
You'll eventually get to where you can get off them altogether, but if and when the pain returns, you really need to kill those keets. You won't get better if you don't fight them; it just gives them time to multiply.
Not to scare you, but I've heard of people being symptom free for seven months and then had a relapse. Hang in there; the heeling is painfully slow, but this too shall pass. --Nancy
-------------------- Nancy Posts: 963 | From N. Olmsted, OH USA | Registered: Jan 2003
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posted
I have never done the titer, but I have tried to reduce meds four times and each time my sx have come back. It just takes awhile, I guess. (I am closing in on two years of Biaxin and Plaquenil.) It is profoundly frustrating, but I have to beleive that in time I/you will be better!
Julie
Posts: 307 | From Byfield, MA | Registered: Jan 2004
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Not to confuse you but just to let you know about my experience.
I was on heavy ABX for 16 months. Took a break about 3 and a half weeks ago. Pain decreased, then increased and has now decreased again. Some of my early symptoms returned with a vengaence ....then just disappeared. I plan to return to ABX soon as I know my treatment still has a way to go, but this break has been great and I am very glad I choose not to jump back on the abx at the first sign of pain ...... it did go away and I have had some of my best days since getting sick during this extended break.
I do have symptoms coming back, but I also wonder if that is my own immune system killing keets. A herx from my own immune system doing the killing.
I thought the pain came from killing them? From the toxins off die-off. Not 100% sure of this but this is what I read a lot. No, I don't plan to stay off ABX. ABX are needed to help, but by far are not the whole picture. Healthy lifestyle is essential to recovery. I think a break from ABX is not bad. The keets only replicate once a month. This is a very slow growing infection. ABX will never control it alone. You must improve your immune system and give it a chance to work if you are to ultimately keep this in remission with alternatives and healthy living.
As far as having a baby, (wow! that is so far from my reality!)I think f your a lyme patient it is sugested that you are on ABX during the pregnancy. I guess Dr. J the pediatric guy is the one to consult on this. I would follow what he reccommends as he has helped many parents and children. He is outstanding at his work!!
The disclaimer: I am not a doctor... I don't even like doctors (except my LLMD whom I love). SO double check everything I say ........... this is just an opinion.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
If you can recall your initial symptoms comming on slowly at first you may discover a pattern.
I doubt if your immune system is causeing a herx and that is why you feel better and then worse.
It's probably due more to the cyclical waxing and waning of symptoms each month typical of this disease.
I personally get worse every 20th or so every month...not as bad when I'm on abx at the time. Whenever I go off however the flareups seem to gradually grow in intensity till I need IV abx again...sucks I know...zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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I agree with Nancy, but in time you may want to try a break and see how you do. Right now, it sounds like the Lyme is coming back.
I've never done the titer either....is that the ELISA or what???
Have you been treated for babesia?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
It could be a co-infection. Maybe babesia, but also possible a non-tick borne infection that the abx was helping with.
I also think that if the pain is caused by something like tight muscles, or problems with the spine, it may take more than abx to correct the problem. I don't think my pain would have gone without a muscle relaxer, physical therapy and eventually strengthening. My muscles were just too tight to relax without the extra help.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Thanks guys. I have been on a reduced dose for about 2 weeks now. I am feeling much better and at the beginning of my treatment I was tested for co-infections. I was negative for all co-infections. Robi, Yes I to have decided to power through a small amount of pain to see what happens. From time to time in bed I get a small amount of numbness in arm and pain has decreased significantly. Only time will tell but I guess I figure that little blue pill will be there if I need it. Also, I have changed my eating habits and have started on the South beach diet. I take a womens multi-vitamin daily. Hopefully one day this will be a distant memory. Good luck to everyone on here! You are in my prayers! Posts: 204 | Registered: Jan 2005
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