I have had lyme for 3 years now and been on abx for 1 year this month. I have had improvement that I don't live in pain anymore, but my arms and legs are still pins and needles all the time and herxes are usually only a couple of days a month now. My doctor thinks I'm improving on the meds but feels I may have neurological damage. Has anyone else been diagnosed and if so what can they do for me?
Posted by NP40 (Member # 6711) on :
I wouldn't throw in the towel just yet mamma. 1 year is not a long time to be treated considering you've been ill for three years. Many here have been treated much longer. I'm willing to bet with continued treatment, you'll see continued improvement.
Posted by lymeHerx001 (Member # 6215) on :
So np 40,,
In your opinion.
If I have had lyme for 10+ years then how many years of anti-biotics do I need.
Ive been on them for close to a year and now their adding flagyl,.
Pain is less severe. Nero problems and others still exist.
Posted by Tincup (Member # 5829) on :
Several doctors mentioned again.. at the most recent Hope to Heal Lyme Conference... that patients should be treated for 2 months after all symptoms are gone or they often relapse.
Posted by mlkeen (Member # 1260) on :
I saw the most improvement in brain function after 18 months of orals. I had accepted that I would always struggle with some tasks. But most days now I can consider my brain function normal.
Do be treated for co-infections and use adjunct therapies to re-build your immune system.
Mel
Posted by Foggy (Member # 1584) on :
Do you have coinfections? If so have you been treated for them? My LLMD said that testing for them is also very unreliable
I was on abx for about a year and mae little progress. Switched LLMDs and treated Babs with Mepron & abx and started to make progress. I also had parethesias and theyt didn't improve until I treated Babs and Bart.
[This message has been edited by Foggy (edited 25 May 2005).]
Posted by mammachase (Member # 5697) on :
Hi, I'm not sure I was never told that I was being treated for coinfections, I'm only taking biaxin, plaquenil, quinine sulfate and I was on doxy but he just removed it and upped my biaxin to 3 times a day. I see Dr. D where I am improving except for the neurological part should I ask about this? He will be sending my report to me from visit last week, then I'll have more to go on.
Posted by ibrakeforticks (Member # 6785) on :
What do people think of Dr. S' theory that the accumulation of neurotoxins can create these chronic neuro problems, and with cholestyramine binding and clearing them, symptoms improve?
Posted by liz28 on :
I'm treading on thin ice here, but I personally believe that the biaxin/plaquenil combination is a midlevel treatment, something you would start out with but not stay on. Some people do say they improve on it, but after a year you should have either seen clear results or switched to stronger abx.
Plaquenil is an obsolete malaria drug, and I found that while it temporarily made me feel better, it did nothing to cure either babesia or Lyme.
For a long time, slow improvement was all that many Lyme patients could expect. But there are many more treatment options these days, and while you certainly don't want to be in denial about how challenging Lyme can be, you also don't need to resign yourself to unnecessary suffering.
If you know that you've treated any co-infections and are ready to try exercise, that can reverse a lot of the neuro symptoms. Also, try supplements like phosphatidylcholine or fish and plant oils. These are harmless, and have been known to clear up brain fog.
Posted by o2igiv1 (Member # 1111) on :
I am in my 3rd year of treatment and have permanent damage to the nerves in my legs and my bladder. I had an EMG done that showed the nerve body ( the axon) are permanantly destroyed. I have a morphine pump implanted in my belly to help with the pain caused by the damage.But every person is different so don't get discouraged. If the nerve damage is to the myelin sheath that surrounds the nerves then that can regenerate. It just takes time.
Posted by Lymester (Member # 5848) on :
mammachase,
at this point, who can remember?!
Laughter is the best way to deter tears and it's a bad habit, but to answer your question, the doctor can view lesions on the brain with SPECT scan and MRI.
I also have the arm, pins and tingles. muscle spasms. I have also had the sensation (as when you're just about to fall asleep you fall backward?) that when sitting still, my brain is falling backwards only I'm awake. That's freaky and I would be certain that I have neuro damage.
I would say that one month is nothing. I've tried it several times until I got so sick, I'm afraid to go off abx.
Lymester
Posted by Areneli (Member # 6740) on :
I don't think it is a neurological damage.
As ibrakeforticks put, you still have accumulation of biotoxin in your body - some kind of a depot and the needles you feel are likely opening cysts. In my hypothesis (to which I stick for long time in spite of some opponents) you may feel cysts opening as their contents are very toxic and irritating, even if their size is so small.
In my opinion, you need some good cyst busting medication (such as Tinidazol or Metronidazol or mega dose of vitamin C - I think vitamin C works about the same as Tinidazol or Metronidazol in destruction of cysts) and also take cholestyramine to remove toxin from your blood stream. For a while (weeks or months) the feeling of needles will actually increase but eventually the feeling will disappear.
Some cysts may still contain living Bb so some other ABX may be indicated as well.
Posted by Monica (Member # 224) on :
If you have experience demylineation of your nerves, it will take a while for the sheath to regenerate. As others have mentioned, there could be other reasons.
I have had Lyme for AT LEAST 17 years. My treatment up till this time has been on/off/on various antibiotics. I feel I am finally being treated by someone who has a good handle on how I should be treated.
My LLMD explained to me that plaquenil is not an antibiotic but changes the alkaline level of the cells, allowing the abx to penetrate more effectively.
