kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I know that I'm not one of the people on this site that has a lot of advice for people, but I feel led to put this out there for those who are frustrated with their treatment.
I see a lot of people who try this and that for short periods of time. I'll read where someone maybe did a combo abx for 4-6 months and then say that it didn't work.
And then I'll read where someone has done some abx treatment for 6 weeks or so...you get my point, I hope!
Please keep in mind that it takes most people who are chronically sick with this disease at least three years to start to see a real change in their illness.
I know this is not everyone's story, but I've talked to a lot of people, and the ones who stayed the course say this same thing over and over.
If you watched the "Under Our Skin" DVD, you might remember Jordan, the park ranger, say this same thing. It was at year three that he noticed a change.
That's not to say that he was totally well and finished with treatment at that point either!
My point in all my ramblings is just to try and encourage you to NOT GIVE UP! We all want this to be over with sooner rather than later.
I hate more than anything to see my child suffering, especially after treating for almost two years. It's frustrating, but I will not stop the abx because I know it is hitting the bacteria.
Disclaimer: I know that some have had no other choice but to discontinue abx, and I totally get that too. This is for those who don't give the abx time to see a significant change in their illness.
God bless!
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
According to Dr. K. Parasites need to be treated FIRST and Lyme SECOND. Antiparasitics are needed as well as abx. That was true for me after 4yrs of abx and was the KEY to getting me well.
Abx alone are not enough to treat this disease, and that is probably why many are on abx for so many years.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Do you need script for parasites or can order supplements to hit this.. I remember being put on something for just a week and then started program.... What say YE????????
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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posted
I was very ill for an entire year to 18 months on abx. Began feeling like I had turned the corner by the end of year 2.
It took 2 more years to beat it. I had Lyme and Babesia. Thankfully no bart.
So yes, patience is helpful.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I agree with you Gael. I wish we had known about parasite treatment before starting with the abx.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Lyme is way too complicated... so each of us must research and make our own decision.
For me giving up Abx does NOT mean giving up on treating at all! It just that the more I studied and learned the more convinced I am that Abx is not the right path for ME. There are too many variables, parasites, heavy metal, genetic defects, etc... etc... that are being ignored. And until I'm being treated comprehensively in the correct order, I do not believe I will achieve the desired results.
That's my conclusion, I'm not a Doctor... only a patient trying to find MY cure.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
This is very thoughtful kidsgotlyme.
I think the fear for us newbies is how do you know that what you are doing is working or is the right course? there are so many different treatments...how do you know you are on the right one for you? and do you just stay on it? or do you switch it up to cover all the bases?
for instance, I am feeling pretty ok right now that I am back to Zythro and Doxy... do I still hurt? yes, but I don't feel sick. I have good energy and emotions. But is that good? do I stick with this? or should I be feeling horrible to know it is working?
I come on here, read books, and each one makes me think that something else is better.
For me it has been an 18 year mystery that I finally feel that I am working on, but now that I know what it is (I think anyway) I am fearful to waste any more time. willing to put a year, two or even three or four into treatment...as long as I feel it is working. But how do you know?
Posts: 1728 | From USA | Registered: May 2011
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posted
Maybe a good beginning would be to actually read Dr B's guidelines. That may help you decide. I mean that with all respect.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
thanks tutu. I have read them, back and forth and back again. It makes the most sense to me, but it is still all part of the information overload that is confusing. I'll stop whining.
Posts: 1728 | From USA | Registered: May 2011
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Kudzuslipper- You are not whining. We all go through information overload. And it does get all confusing and jumbled up sometimes.
I very much agree that we all have to find our own way. It's a very complicated disease with many, many components to it.
The reason I put that out there is because it's so easy for us to think that if something is not working within the timeframe that we have in our minds, then it must not be working and that's simply not always true.
I just wanted to be the little voice that reminds us all to be like the tortoise, not the hare.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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