i quit going to my llmd, various reasons which right know, i don't have time to discuss, becuse my dad is very sick and i and going back over to see him. but i was wondering, i went to my regular doctor the other day and he is now going to take over treating my lyme , at least until i figure out what else to do,
but anyway, he wants my to see an infectious disease doc, but he told me that, (by the way, i've been on abx for almost 4 yrs, finally bicillan la 2 shots a week along with the help here and there with other abx have put me on the right track better after taking the bicillan la which has been about 1 yr, started off with one shot than about six months later uped to 2 etc.
now regular doc said its not good to be and abx for so long, and i said but i still have alot of symtoms , some just calmed down some changed etc, the doc said that i could still have symtoms but the infection counl be gone becasue it could be perment damage, and i will always need pain management...etc like he used my arthrisis(?) for example he said the lyme gave you that and you will always have it now.
havs anyone aver heard of these, i'm scared to go off the bicillan la, but i havent seen the inf, disease doc yet so don't know what he will say. any thought s will be helpful.
people just don't realize if they have their health they have everything ~myjesticgirl5
Posted by NP40 (Member # 6711) on :
I'd be careful leaving your LLMD. Between your local doc and ID doc I doubt seriously they would approve of the abx you've received already, much less giving you anymore.
Posted by Aniek (Member # 5374) on :
That's the Camp A versus Camp B debate. Most of the medical community will probably say you don't have Lyme anymore and it's damage.
Many of us on this board have come to the conclusion they are wrong. Most LLMDs will say as long as you have symptoms, you have Lyme.
Personally, I've had Lyme for 19 years, 17 undiagnosed. I know that chronic untreated pain changes the neurological system and increases pain. So I don't expect to ever be completely pain free. But the way I herx when I start abx tells me that there is still an infection and I still have progress to make.
Have all 4 years of your treatment been with the same LLMD? It may be that another view would help, but I would try to get that view from within the lyme community and not without. There are some doctors who won't even consider the possibility you have lyme, and that's not a helpful opinion.
Posted by david1097 (Member # 3662) on :
Hi
This is an interesting question and one that needs some detail as to what the symtoms are. There are however a few things that one should realize.
Lyme Can cause permanent damage. In particular neurological damage. Not repairable, not recoverable but you can be trained to minimize the impairment.
The Ilads guidelines refer to treatment end point being 2 months with out Cyclical symptoms. Ie "classical" Lyme has regular flare ups. It is these that are used to determine end point, NOT the total disapearance of symptoms.
There may be some other underlying disease process that may also be occuring with the original lyme infection that has caused damage or continues to creat one of the symptoms. Co-infection with something else is always a big risk factor. if you stop treatment you will find out soon eneough.
If you stop treatment, Be on the watch for a trend towards worsening of the symptoms. For Lyme this would occur over weeks, not days. In such a case then abx restart would be waranted as this is a clear lyme relapse. If it occur in a few days, then it is likely someting else (co-infection or other infective disease) and if contoues to get worse then you need to look at the symptoms and try to figure out what this previously unkown infection might be, perhaps a new drug or drug combination might be needed. In this regard make sure that you can re-establish contact with the LLMD and get in to see him in case you do start to relapse.
Relapse will be unmistakable. if you think " I think I am having a relapse" then likely it is not. When A relapse occurs, the things long forgotten about the illness will once again become fresh in your mind.. All I can say is trust me on that since it has happened to me more than once.
Clinical experience has been recalled where it has been found that life long antbiotics of one sort or another is needed to prevent relapse. This is particualrly true for mutiple co-infections. Lyme-coinfections are not the only disease where this may be needed. Leporosy is another so if an ID says that there are no diseases that need life long antibiotic support, ask what he knows about leporosy and the world health organization guidelines. You might also mention if he knows about acne. ( be careful how you pose this info as you may just **** him off... it might be better to deal with a Dr that you can have a serious discussio with that you have known for a long time...)
The ID you see WILL say to stop the ABX, without question. When you talk to him ask what he recommends if you relapse. DO NOT MENTION PERSISTENT OR CHRONIC DISEASE. Relapse is a recognized effect (even the CDC says so), CHRONIC DISEASE FOR LYME IS NOT.
THE ONLY WAY TO FIND OUT IF THE DISEASE IS STILL ACTIVE IS TO STOP TREATMENT AND SEE IF RELAPSE OCCURS. There is no other definative marker... period.
I have pondered this question many times my self. the above are my conclusions thus far. Other may not argree but this is what i think.
Hope it helps.
Posted by seibertneurolyme (Member # 6416) on :
I pretty much agree with everything everyone else has already told you.
Good luck and hope you continue treatment. In my opinion, arthritis is not usually a permanent Lyme symptom unless you have had it for decades and are approaching senior citizen status.
Not saying it is easy to treat or doesn't take a long time -- just that I do think it can get much better with the right treatment for long enough.
Bea Seibert
Posted by bettyg (Member # 6147) on :
Breaking this up so we neuro lymies can comprehend and read this; confusing...
quote:Originally posted by myjesticgirl5:
i quit going to my llmd, various reasons which right know, i don't have time to discuss, becuse my dad is very sick and i am going back over to see him.
but i was wondering, i went to my regular doctor the other day and he is now going to take over treating my lyme , at least until i figure out what else to do,
but anyway, he wants my to see an infectious disease doc, but he told me that, (by the way, i've been on abx for almost 4 yrs, finally bicillan la 2 shots a week along with the help here and there
with other abx have put me on the right track better after taking the bicillan la which has been about 1 yr, started off with one shot than about six months later uped to 2 etc.
now regular doc said its not good to be on abx for so long, and i said but i still have alot of symtoms , some just calmed down some changed etc,
the doc said that i could still have symtoms but the infection counl be gone becasue it could be perment damage, and i will always need pain management...
etc like he used my arthritis for example he said the lyme gave you that and you will always have it now.
havs anyone aver heard of these, i'm scared to go off the bicillan la,
but i havent seen the inf, disease doc yet so don't know what he will say. any thoughts will be helpful.
people just don't realize if they have their health they have everything myjesticgirl5
I agree with everyone else. good luck.
Posted by Lymetoo (Member # 743) on :
Have you been treated for babesia and checked for bartonella? Babesia can cause pain also. I think you could be stuck with some pain, but you may also have an active infection...it's hard to say for sure what is going on.
I would never see an ID Duck unless I was dying and he was the only dr available. UGH!
Posted by Lisianthus (Member # 6631) on :
I agree with Lymetoo...... After being treated for so long, you should be tested/treated for co-infections. My sister was on abx for 4 years with no relief until she was treated for Babesia. Then huge difference!
Plus Dr. J says to treat until ALL symptoms are gone and then 2 months after that.
Lisi
Posted by AZURE WISH (Member # 804) on :
Its the theory that is floating around causing us so much damn greif.
I have been told that I know longer have lyme throw out my abx - it is now post lyme syndrome - another said now its fibro - when I say but the abx are making me better - they say well I dunno but you you dont have active lyme anymore.
What other disease do you get told you are better when you still have symptoms and when you still have a positive response to treatment
Find a new llmd - otherwise you may be denied treatment due to ignorance arrogance and a lack of common sense.
Well thats just my opinion.
Good luck with whatever you decide to do.
Best wishes
Posted by myjesticgirl5 (Member # 3497) on :
i want to thank every one that responded to my question, it was of great help and made alot of sense to me. what's funny is the id hasn't even called to set up the app. and that should of been done on the 23, maybe they don't even want to see someone with lyme, if they actually believe i have it...lol i would go to a different llmd but right now the options are limited because of the drive and limited income ( we all know what that is like with dumb this thing, it takes everything we have and doesn't give back).
babs(?) does that affect your memory, concentration, etc too cause just for the last 2-3 months it seems like that part of my symptoms plus eye trouble, and the still joint pain came back with a vengence?
i'm was taking clindimyicin 300 mg 1 daily, for about 3 months just stopped about 1 week ago and the bicillan la 2 shots weekly still on.
thanks again for the help , myjesticgirl5
Posted by JimBoB (Member # 8454) on :
I pretty much agree with David.
I am one of the "older" ones, and it is really difficult to tell WHICH is caused by genetics and age, and which is caused by Lyme or maybe co-infections. As Arthritis runs on my mothers side of the family. Some in nursing homes by my age of 65.
I definitely have both. Though I still have not been tested for Lyme or any co-infections.
One thing you may do, is check into a good herbal protocol such as illustrated in the Healing Lyme, naturally, book by Stephen Buhner. There are MANY herbs that take away ALL of your BAD symptoms, without side effects to affect your GOOD quality of life. Even IF you choose NOT to use herbs to "cure" your malady, you will certainly feel MUCH better with certain ones that take away the symptoms.
WHAT have you got to lose?
Jim Posted by liz28 (Member # 4946) on :
I have a little bit of chronic inflammation, despite being symptom-free for Lyme, babesia and bartonella. I can exercise, work a full-time job, and stress out like normal people, but still need anti-inflammatories at least once a day.
Posted by davidx (Member # 8326) on :
myjesticgirl5-
First, I have to say that at the end of your message what you wrote is so true:
"people just don't realize if they have their health they have everything"
I have to admit that before all this crap happened to me I probably fell into that camp to some degree...we just take health for granted sometimes when we are healthy.
Anyway, your question is a great one and I have asked the LLMD I am seeing this exact question. Could my lyme be cured and the neuro symptoms that I have just be permanent damage? And also, how do we know that the symptoms that I have are actually caused by lyme (or co-infection) and not by something un-related?
The answer he gave me was that he really just doesn't know and there really is no reliable way to determiine whether or not lyme is gone even with another blood test.
There were some really good responses here but at the end of the day if you still have symptoms I am not sure it is completely possible to determine whether or not they are there permanently and that lyme is gone. I do hope you (and everyone else of course) continue to feel better.
~David
Posted by 5dana8 (Member # 7935) on :
Hi Mjesticgirl5
There is some very good advice given already from the posters above.
Here are a few links to help with your questions about the co-infections
[ 03. July 2006, 01:41 PM: Message edited by: 5dana8 ]
Posted by ChrisBtheLymie (Member # 8916) on :
I would say if you are improving/herxing on the ABX then you obviously still have Lyme.
If nothing at all is happening, you should look into coinfections, viruses, heavy metals - things that might be stopping you from getting better.
Posted by Lo (Member # 987) on :
I am going to bring up my post that says crawling skin - Ick! Please read it and now I am going to tell you that I went to my LLMD this morning. I am now back taking Ceftin for a week now and the crawling movements have almost left me completely.
She said well, some people never get rid of active infection as hard as they try. I have been on everything you can immagine for 6 years including rocephin by injection including the central line to my heart for months.
So, I have always been afraid to stop my abx and this is the first time I tried and the lyme took off. Good Luck. Be careful. Lo
![[bonk]](graemlins/bonk.gif)
![[Wink]](wink.gif)
, myjesticgirl5
![[Cool]](cool.gif)