posted
I am having trouble navigating the world of this very complicated disease. I don't know what route to try or who to listen to. Everyone has their own story- successes and failures.
I've done almost a year of abx with no success. I have had trouble though and had to stop and start many times. The tx has been far from consistent.
Now I am considering other options- going to an LLND, medsonix, rife, etc. How do you decide? How do you know what's best? Or do you just put your energy and $$$$ into one treatment, cross your fingers, and when it fails, move to the next?
Posts: 341 | From NY/FL | Registered: Apr 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I can only speak about what I have learned during my journey. I wish I had been tested earlier so I would have know what I was infected with. I spent a year concentrating only on lyme (Bb) when I had other infections I did not know about.
Then I concentrated on bartonella not knowing I also had babesia. When my treatments failed it was because I was experiencing the emergence of another pathogen.
If your treatment is not working I always wonder if perhaps you have another infections (or two. . . or three) that is being missed. The abx are specific to the individual infections.
I feel you should experience a herx if you are hitting the right infection and then in a couple of months you should begin to feel better. This is especially true of lyme. My flares/herxes happend like clockwork, every full moon (28 days).
You may have to change abx but you know you are on the right track when you continue to have those flares followed by a gradual upward climb.
When the symptoms do not wax and wane it is probably another infection coming out and taking over. You will not always have classic symptoms. I didn't so I continued to tell myself I only had Bb. You have to be a good investigator. Keep a log a follow what is happening to you.
As for other therapies, I do not believe they are as effective as antibiotics. The first time I thought abx was failing I went on massive amounts of herbs, only to completely relapse.
I believe herbs etc have their place to support the abx and later when you are symptom free and go off abx, to prevent a return of the disease. I just don't believe they are strong enough for these infections. And speaking of $$$$, herbs are usually much more expensive.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
It all comes down to one thing (everyone is different). You need to do your research and decide what's best for you.
A lot of people do well with there LLMD's helping them decide what meds they should take.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
My daughter only began to show improvement, after a decade of everything under the sun approach, when we enlisted the help of both a LLMD AND a LLND that utilizes energy testing.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Research, research, and then research more. Ask questions, questions and more questions. Send pm's to people who did this protocol or that protocol and ask them questions about how they did on the protocol (or doing now), how difficult it was to do, how long it took to get better, how much progress they made, what did it cost, etc, etc.
After you spend time researching and asking questions, you make a decision about what you feel is best for you and go for it. There is no one size fits all. Whatever you do, don't let anyone tell you that you chose the wrong protocol. Only you can make this decision, but you need to do it with as much facts, knowledge and information as possible.
I've never told anyone that they should not do a specific protocol or put down the doctor or ND who treated them, but some people will do that--ignore them. I can understand people wanting to warn you about the dangers of certain protocols (there are some risky ones out there) just so that you know what you're getting into, and that's OK, but ultimately the decision is yours to make.
I wish there was an easier way, but because of the nature of this disease, and the fact that we all respond differently to different protocols, it's a tough decision to make. And then when you add to the fact that the AMA, IDSA, CDC, and the insurance companies have basically written us off, we are left to fend for ourselves. That's unfortunate, but it's a reality that we have to live with.
You will find the right protocol for yourself. Research, ask questions, get as informed as you can--the answer will come.
posted
Thanks everyone for your thoughts. I am going to meet with an LLND in April and see my LLMD on that same day. Ideally, I would hope they would work together. It is just so hard to know what's right. Frankly, I would drop everything and get treatment wherever if it meant getting better,...Germany, Seattle, DC, wherever...
So far I have done monotherapy with doxy (1mo), amoxy (1mo), IV rocephin (7wks), ceftin (3mos), IV Invanz/Tindamax (1 week- nearly killed me), Tetracycline (1 month), and now I am on diflucan alone....
I cant handle a lot of the abx... and my herxes have been so severe that I end up hospitalized. I dont improve when the herx is over and I have had to stop taking meds many times because of it...
I am thinking, because of this, I may try a more naturopathic route- though I hear that the herxes from that can be just as bad. I have been sick 15yrs undiagnosed...
I just want to get better. desperately. I love my life.. I really do.. but I hate my life sick. I dread each day of sickness because the pain and GI troubles and malaise are torture.
Thanks for posting. I hope you are all right that I will find my protocol... I just feel sorta hopeless after a year of treatment and NO improvement. If anything, I am worse than when I started...
Posts: 341 | From NY/FL | Registered: Apr 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
renny, I think you have been given a lot of good advice.
Since you get so sick on just monotherapy, it really sounds like you have problems detoxifying. This can be a genetic thing.
Why not find someone who is really, really good at detoxification and have them work with you as you work with a great lyme doctor to get rid of your diseases.
You can ask around on this forum, at lyme support groups, etc. Maybe even a good lyme doctor's office can recommend a "detox expert" if you will. You could call a few of the top docs and see who they recommend.
This is not an uncommon problem. A certain percentage of the population has it. It does complicate treatment. But, it is not impossible to be treated even with a detox problem.
Please persevere. That is the key. And, let us help you here all that we can. With all the combined experiences of these members, you can get good tips for the problems that you encounter as you fight these diseases.
Burrascano mentions detoxification issues a little in his Guidelines. The discussion is on page 13, entitled "Borellia Neurotoxin."
This section may give you some tips on names to look up on the Internet and subjects so that you can learn more about the detox problem.
I had one lyme friend that had this problem. Her treatment also made her sick. Then, near the end of treatment, she began to get sick from many, many foods. Finally, there were only 5 foods that she could eat without getting sick. This is another sign of inability to detox. You start to have sensitivities to everything.
She went to a naturopath who found that she had not detoxified from flu shots, tetanus shots, etc. she had had years ago plus all her lyme treatment. This practitioner restored her to health along with the lyme doctor.
This lady was so happy when she was released, healthy, that she sent the most celebratory email to every single person on her mailing list.
Please consider this as a possibility. I pray that you will find the solution for you and you will be posting about your health progress very soon.
Posts: 9931 | From Maryland | Registered: Dec 2007
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
You really can't know which method will work for you in particular. You have to try them, and see.
Rife frequency treatments were one of the few options we had available, so our decision was kind of made for us.
Luckily, it worked well for my wife. If it would not have worked, we would have gone on to some other method. That would have been hard since she does not tolerate oral treatments well.
Trial and error has shown us that she is not going to do well on an oral treatment, so we don't use them only as a short term help.
Figure out what is probably not going to work for you personally, due to your unique needs, and go from there.
There is no reason to stick with something if it is not working for you. We are all different.
Good luck, and don't give up.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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