posted
Hi. I'm pretty new here and I've been reading lots of posts trying to understand what everyone goes through with this disease. It seems like most of you have been on antibiotics for years? Doesn't Lyme get cured eventually on Antibiotics? Can the drugs make it dormant for life if treated right? I'm very scared with everything I'm reading. My 14 year old was recently diagnosed and she just started ABX 100MG Doxy. Her LLMD said one month at a time. I work with someone who had Neurological Lyme and only needed to take abx for one month and is fine now. How is it that some people need it for years and others don't? I'm trying to get a handle on this. Thank you for your comments.
Posts: 163 | From Central New Jersey | Registered: Jan 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It has to do with a lot of different factors. Some people can be exposed and not get sick. Others get chronically ill.
I had it pretty severely and am well today. My daughter had it, too, and after taking it month by month with abx, she was well in 5 months, but we treated two months past her last symptom, then changed the protocol and treated a month longer. We didn't want to take any chances with her, so her treatment was 8 months total.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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quote:Originally posted by lauriemay1: How is it that some people need it for years and others don't?
wish i knew. i was 30 and healthy with no medical conditions when i was bit. started treatment 6 weeks after bite and have been in treatment with a LLMD for almost 5 months now with almost no progrss. some do better then others but from what i have seen with proper treatment the vast majority of people do get back to a normal quality of life.
at least you know what her problem is instead of being treated for who knows what.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
It depends on so many different things! I've had LD for 22 years at least undiagnosed, severe neuro lyme. I got a lot better after 2 years of abx but when I stopped abx for 3 months all my symptoms started returning.
I also have a teenager with LD... she is 16 and likely has had LD since she was 5.
Yes, a lot of people get back to functional..but some don't. A lot of people go into remission for years and years, some only go into remission for a few months if any at all.
I'd say it depends on co-infections and how your body is able to fight. Everyone is just so different. What works for me, doesn't work for my identical twin who also has LD.
There is no cure for late stage Lyme.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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posted
Thanks everyone, My LLMD tells me that he believes she is in late stage Lyme but we think she got bit about 6-8 months ago. It progressed fast, maybe because of her size.. she's only 80 pounds, I'm not sure. She has neurological lyme - really bad brain fog and about 40 other symptoms. Again these symptoms only started occuring in late December '09 so it's only been a few months of her actually showing Lyme Symptoms. I would love to think that this is a somewhat early catch for not having the bulls eye rash but scares me because it is effecting her brain. The neurological symptoms is why my dr thinks she's already in late stage.
Posts: 163 | From Central New Jersey | Registered: Jan 2010
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Our daughter has Lyme and co infections too.
I have to say she is doing much better since treatment.
I am glad that you are taking her to a LLMD. We finally last May went to a wonderful one in Connecticut.
This board is wonderful lots of info and support.
Good luck to you and your daughter, Jane
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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WildCondor
Unregistered
posted
Your daughters Doxy dose is extremely low, even for pediatric Lyme.
Read the treatment guidelines attached in the link below....
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Don't waste time on the herbal treatments, perhaps later after she achieves remission. Go for the abx, and I agree with Wild Condor, 100 mg of doxy is low. It's my favorite abx, but I take 400 mg a day. I've been on/off it for a few years, but it works wonders. Also, find a good LLMD who'll rotate abx for the coinfections.
Good luck, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
Hi Laurie- For a comparison My 12yr old son is being treated for Lyme and is taking Amoxicillin 250MG 3x a day along with probenecid which helps to raise the level of antibiotic even more. He is 130 Lbs. Best of luck to you and your family.
Posts: 448 | From minnesota | Registered: Feb 2010
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posted
I am so sorry, how did I not see that? for some reason I thought I saw Amoxy in the post?
Posts: 448 | From minnesota | Registered: Feb 2010
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I really think we should not try to give people advice such as dosage advice when it comes to this disease.
WE all know different doctors use various methods for various reasons and such as ramping up or for combination therapy or based on the patients history or such.
WE can not dive into giving out such advice so freely and so strongly as I have seen of late.
Please take in the things you read and write down questions for your doctor.
As you read through posts you are exctly right in your observation that it takes different time frames and dosages and meds for everyone.
Nobody has come up with real answers to why and we are all so very different. Some might think because they go well on a certain med or protocol that everyone should. But that is just not true.
Keep on asking questions though and take those questions to your doctor. If your not feeling comfortable with his answers sometimes we have to change doctors.
Its important that we find a doctor we trust and definately that we trust more than the community forum.
Good Luck and I hope your child has a speedy recovery. Just as long as they are getting the good time and attention from a good doctor then your already on the right track.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Lauriemay1,
That's great that you've found an LLMD! I hope your daughter responds in leaps and bounds!
I agree that 100mg. is low. My 50lb dog was given 300 mg. a day for 4 weeks.
My LLMD believes that 400mg. of Doxy starts killing lyme, nothing less. And treatment must be 6-12 weeks or more, nothing less there either.
My daughter is 14 and we were at her first LLMD appt. today. She had lyme in 2003, was treated by her pediatrician with 3 weeks of Amoxy and has had weird stretch marks and streaks and rashes since then but no symptoms (or so I thought).
I got Lyme last April and found this site which has helped me sooo much! I have learned and learned and figured out that I have Bartonella and maybe Babesia and my daughters markings are also Bartonella.
At my daughter's appt. today, the doctor confirmed that she must still have lyme as 3 weeks is not long enough to kill it (only to keep it dormant within her) and has Bart too.
Probably the worst thing that's happened without any doc believing me that it could be lyme related is that she's had terrible acid reflux and was diagnosed last spring with barrett's esophagus. Precancerous cells? That's scary stuff! Even dormant, lyme will mess with you.
Our LLMD said that Bart needs to be treated before the Lyme is treated. He started her on Rifampin and Azithromycin. She'll start it tomorrow.
I'm scared too by what the medicine might stir up for her, but I'm even more scared about what would happen if we were NOT to attack these bad guys in her. This time, I want them dead, not just hiding.
I'm guessing your work friend still has lyme but it's dormant as long as his immune system can keep it dormant. But if something happens to lower that immune system, the lyme will rear it's ugly head (like have a baby - if he were a she). Sorry to be so dramatic.
Your daughter has neurolyme? So do I. My LLMD put me on Andrographis herb 6 weeks ago and my brain fog is clearing up!! It's a wonderful feeling!
In Buhner's book, Healing Lyme, he talks about Andrographis for 10 pages or more. It's an herb able to cross the brain barrier. He recommends 400mg a day, which is what I take.
I feel for any mom who has a child with lyme&co. It's a scary place to be.
Blessing and best wishes to your family.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Hi Everyone, I made an error with the meds my daughter is on. She is actually taking Monodox (which is a form of Doxycyline of some sort). Maybe the 100 mg of Monodox is more potent? I'm not sure. Thanks for all your responses.
Posts: 163 | From Central New Jersey | Registered: Jan 2010
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posted
Hi Lauriemay1 - My daughter is 13 yrs. old, just found out she had LYME in Jan. She is on doxy,(actually generic)100mg 2 times a day. She is 103 lbs. She now has to stay out of the sun, with the warm weather here. It's been a rough road, but as my daughter states "One day you will feel like you just woke up after months of being in the fog" So, there is hope and don't give up. It will get better. My daughter also had about 40 symptoms, we are down to about 3. We think she has had it for a long time. She never got the rash. Good Luck to you!
Posts: 29 | From NJ | Registered: Feb 2010
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posted
Did she have Neuro Lyme Lyn8?
Posts: 163 | From Central New Jersey | Registered: Jan 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
So sorry you daughter is ill. Hope she has a fast recovery.
17HENS, what your LLMD said.....that "doxy starts killing the lyme", doesn't really ring true. From what I understand Doxy does not actually kill the bacteria, but instead keeps it from replicating, thus in time the bacteria dies out on its own.
Some antibioics do actually kill the spirochete, while others inhibit its growth
Also some LLMDs do not use larger doses. Some believe that no matter how large a dose you put in, that your body can only absorb a certain amount of the antbiotic and using larger doses is not neccessary.
Laurie, I have seen it both ways. I have seen ppl on low dose therapy get well quickly and I have seen them get well in several years. Same with large doses. Some get well quick, some it takes years. Thus I lean more toward the theory that our body can only absorb a certain amount and there is no need to over do the dosage. Everyone has different opinons on this!
One example is that I know 2 ppl that both had LD for several years before getting treatment. One did low dose therapy, the other did large dose, both were well in approx 4 to 5 years. So that is why I question the large dose therapy. Maybe a lot of medicine went in that wasn't even neccessary.
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