posted
Hello all, just looking for your opinion, especially drawbacks of this plan. I had lyme undiagnosed for a decade. Went on powerful antibiotics for four months, and went in to remission. Two years later the symptoms are back. I'm convinced there is no cure at this point. I do not necessarily want to do high doses of antibiotics, since nobody I know actually does that and finds a cure, it is always remission or "symptom relief". When I take 500 mg of amoxicillin a day, I have symptom relief. Can I just continue this for as long as necessary? Until it no longer works? I just want to FEEL WELL today, I am no longer thinking long term. I don't believe there is a way to cure long term lyme disease, this is just my conclusion after years of researching and talking to people. Please let me know if I am off base! In addition, I am conflicted about my three children. No symptoms yet, but if lyme is supposed to be treated immediately or else it is chronic, why do most LLMDs recommend only treating symptoms. Shouldn't my young children be on high dose antibiotics if I really want them "cured"? The LLMD I talk to says don't even test them, just don't go there until the symptoms show. Why? THANK YOU ALL!!!
Posts: 25 | Registered: Aug 2005
| IP: Logged |
posted
I don't know why your llmd said to wait to test your kids. My childrens llmd, Dr. J tests immediately. I know he would test if I wanted him too even if they had no symptoms. I would insist if I were you. pattiecake
Posts: 687 | From PA | Registered: Oct 2004
| IP: Logged |
posted
Hi, thank you for responding. I'd be interested in knowing if you think my LLMD is on point. He says that to test a child is not the way to go unless they display symptoms. The reason is that he would not treat them unless they were symptomatic, because giving strong antibiotics to a child has side effects and can be dangerous, unless necessary. It is also hard to know if a child is reacting to antibodies given from Mom through breastmilk, and he cited the often inacuracy of testing in general. He said that my life will be stressed to the hilt knowing a child tested positive, and wondering if every single thing was because of lyme. He said that it is a clinical diagnosis first and foremost, so when a child complains of things that aren't explained otherwise, like joint pain and headache, etc, then testing and treatment is warranted. If he is off base, I'd like to know. I'm feeling discouraged right now and just want symptom relief for myself. I don't mean to bring anyone else down, but I really thought and was told I was "cured" two years ago, and the lyme is back with a vengence. It makes me wonder if this isn't a new and undiscovered disease I have, that reacts to antibiotics, or is it lyme. I was one of the ones with a CDC positive test through Igenex, and an LLMD who said it was lyme, but my ID doc who said no it wasn't. I hate the confusion over lyme, and am wondering if anyone here sees downfall in the fact that 500 mg of amoxicillin a day makes me feel really good. Is there anything wrong with just doing that? I already tried to get rid of the lyme, and it didn't work. I don't know if I can take even more antibiotic therapy just to have a couple year remission and get it back again. I'm so stressed right now. Some very wonderful people (like Nrs Julie) have talked to me about their own children, but this is the one question I have, to test and treat or not. Would I really treat my 10 month old anyway? Do I test her? Anyway, please let me know your opinions! Thank you!
Posts: 25 | Registered: Aug 2005
| IP: Logged |
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
Personally, I think you should do whatever works for YOU!!!
Am I in remission right now or am I cured??? Who knows? Who cares? Whatever you call it it feels the same, better...much better.
After over 36 months of lots of different kinds of abx, I am either in a remission or I am cured...but, either way, it feels good and I am not in any pain anymore....I've been sick for many years and only found out that I have chronic LD in January 2002...so, consider that there is hope and you will feel better...isn't that all we can really hope for?
posted
If you found something that gives you relief, esp something cheap, I say go for it. Don't have any idea what to do about kids who are not symptomatic. If the tests came back positive, would you really want abx for them, even with no symptoms? This is a difficult situation either way.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
Thank you so much for your insight! I hope to hear from more people to. This is my worry about 500 mg of amoxicillin a day. Since it really isn't enough to knock out the bacteria, can the bacteria adapt TO the amoxicillin after awhile and become resistent?
Just thinking about drawbacks. The 500mg a day keeps the muscle twitching, fatigue, pins and needles at bay, at least so far!
THANK YOU AGAIN!
Posts: 25 | Registered: Aug 2005
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
19 years and ticking: After my IV ABX I maintained my progress (80%) better for 9 years on 200 mg doxy a day.Then major crash three years ago.When I told my current LLD I took oral doxy for 9 years and it had kept me in remssion he was shocked.He believes you have to rotate alot ,or they become immune. For what its worth ,this was my experience. best wishes dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
Your doc might have a point- if your kids are not showing symptoms and are not at all sick... Maybe there isn't a reason to test.
Some people can get lyme but don't get sick. Their immune systems can handle it for some reason.
>>>I'm convinced there is no cure at this point. I do not necessarily want to do high doses of antibiotics, since nobody I know actually does that and finds a cure, it is always remission or "symptom relief". When I take 500 mg of amoxicillin a day, I have symptom relief. Can I just continue this for as long as necessary? Until it no longer works?
Well, I think I got rid of the lyme itself. I did 3 years of doxy because I didn't have money or access to anything else. Then I got 4 weeks of rocephin and 4 of ceftin and added flagyl then tini to these while doing them.
Because I had the bacterial count down after 3 years of doxy, this tx did get rid of the lyme I think. The cephalasprins worked on the adult stages and the azoles worked on the egg stages. At the SAME time... Now I have "just" have to get rid of the additional co-infections I have.
Maybe you should look into cyst forms of lyme bacteria and also get checked for possible co-infections.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
| IP: Logged |
posted
Thats why i believe only in Marshall Protocol www.marshallprotocol.com , i too do not believe in standard treatments cause i listen people and they have hope but never got cured.
Posts: 641 | From Wroclaw, Poland | Registered: Mar 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bonk]](graemlins/bonk.gif)
Printer-friendly view of this topic