posted
I have only been diagnosed for 3.5 months with Lyme so I am still very confused...and it seems all the reading here is only getting me more confused.
I'm hoping some of you can help me with my dilemna. It seems to me from all I have read and discoverd so far that most people don't really get better from abx.
Let me clarify what I am thinking. Some people feel better on abx but then relapse when off, some people feel worse on abx (that's me) possibly because of herxing. But it seems very few actually get better with abx.
And with all the possible problems abx can cause ie: candida, repressed immune system which can lead to "superbugs", GI problems etc...why continue? I guess for some, there is improvement but for me, I am seeing none.
I am very fearful that the abx are going to make me worse, not better.
I have lived with Lyme (I think) for 9-10 yrs and my main symptom has really only been fatigue and hair loss. I've had various other things come and go but nothing debillitating. In fact I have lived a pretty normal life MOST of the time.
Now that I am on my 2nd round of abx (Ceftin) I feel 5x as bad as I had before....and this has lasted 3 weeks with no end in sight. (I didn't feel this bad on Doxy) Does a herx last that long? I can't stand it anymore...I don't have the luxury of laying around with 3 kids and a job.
My thinking now is that if abx isn't going to cure me...or even make me feel better then why bother?
I know there are a lot of holistic and natural treatments, supplements etc but there are so many out there I don't know where to begin. I am taking probiotics, olive leaf, B50, CoQ10, Vit D and sticking to a sugar free/carb free diet.
For those of you that gave up abx, how are you feeling...and if you are feeling better, what did you do to get there?
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hi, I was on abx for 4 yrs. When I started using alternatives such as herbs and salt/c I made really good progress.
I probably needed the abx in the beginning because I was so sick, but I had to try other things and that's when I started to make progress. After over 3 yrs of aggresive alternative tx, I am so much better,
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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posted
So 4 years on abx not much improvement? Then 3 yrs on alternative tx and great improvement?
That's why I'm thinking I might skip straight to the alternative tx. I think I am already developing GI problems from the abx and I certainly don't feel better at all!
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Sorry for what you are going through. It can be very rough in many ways. Still, I hope you can find a good path and see it through to the other side.
3.5 months is not nearly long enough to see improvement with lyme treatment. Thirty weeks, minimum - or much longer in some cases.
Were you assessed for other tick-borne infections? That is very important to determine for the best treatment.
Be sure to read the books by Buhner and by Zhang. Singleton's, too, is high recommended so you understand how to support the endocrine system, etc.
I highly recommend Zhang's book and, were I able to have continued, would have stuck it out. I did great for the few months (twice) that I could do the whole plan. Longer is needed. It is well worth it and very good quality product. Excellent, in fact. But I spent all my pennies long ago on a lot of stuff that did not actually address the infection.
Regardless of what you think about leaving abx behind, it is still good to study Burranscano' protocol and learn all about the spirochete and how it works so that you can outsmart it.
Just my opinion but, with what you listed, it is not nearly enough to get you anywhere. Olive leaf would be the only antimicrobial and while it can be good it is not nearly enough alone. I know, I relied on that for a long time. You don't want to be here ten years from now, believe me.
Even with natural methods, very precise combination formulas are required . . . or rife . . . etc. Often abx with herbs are best.
Do you have a good LLMD, one is is versed in all the options? The main problem with abx is that liver support is often neglected. If that and other supplements are in place, the abx can do their work w/o doing damage.
posted
Hi, I was diagnosed in 2000. I like you was scared. With all the issues of abx being bad and wondering if it was harming me more than helping. for eight years i would take meds for 8 months or so then go off i would hold out for almost a year then i was downhill again. Is this correct treatment probably not. But like you i was scared. This went on until that year passed until 6 years. Now doc thinks i have relapsed not proven yet.
My concern is that if you dont treat then serious complications can occur, heart issues, mind issues, arther etc.
I think treatment is a personal thing people have to decide for them selves and there doctor. I do know doing nothing isnt a good option. Once you get so far down physically it takes longer to pull yourself back up again. I spent 8 long years mostly in bed i do not want to ever go down that road again if i can help it.
Not to speak of the damage they lyme does to your body while doing nothing.
You have a great support group here who will do all they know to encourage you when your down. I know they helped me for a long time.
Posts: 112 | From Ohio | Registered: Aug 2006
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From two pages of symptoms, I now have only six. This could change at any time depending on what peels away and what climbs to become top issue.
Like you, I was wary of the abx; learned of damages to others. Sure, there are success stories for abx, but this would not have been so for me. Very glad this was not my path.
Special prays to you as you decide your path. Grace
Posts: 212 | From Arizona | Registered: Jul 2008
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posted
Thank you all for the responses. I will definitely get some of the books recommended.
And also thank you all for the support. It's nice to have a group who understands. I want to stay positive but lately I have been very down.
Keebler, what else should I take besides Olive Leaf? I am also on a good pro-biotic.
I do have Burrascanos treatment guidelines and continue to read that. My doc is not an LLMD but most people in my area who have Lyme go to her. She is very Lyme friendly and knows quite a bit about it. She diagnosed me without me ever even knowing a thing about Lyme. I just thought I had CFS.
Grace, what is TB, Nanobacteria?
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Most people do get better with antibiotic treatment.
Depending on how sick a person is, how many co-infections, how long they had lyme, abx treatment can be long-term (over 1 year).
Many people also use abx intensively and then use alternative protocols to stay well.
Your best chance for good health is to read alot on these complex diseases, and work with a lyme literate health practitioner.
Some people who are not that sick (it ranges widely; some are totally disabled and terribly ill, others can have mild symptoms) seem to get better with little treatment. Lyme can be a relapsing/remitting disease, which might explain some of that.
Posts: 2557 | From home | Registered: Aug 2006
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I believe quite people do get better on abx, but then get on with thir lives rather than hang around the Lyme forums, but there isn't one sole way to get better.
Why not incorporate some natural approaches whilst on your abx regime and give it a realistic time period, since you have already invested a few months on abx?
If you do decide to stop, however, I would follow a complete alternative protocol [eg Condensed Cowden, Buhner, Zhang] if you can afford it rather than go it entirely alone.
Posts: 1647 | From UK | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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TxLymie,
You asked: " . . .what else should I take besides Olive Leaf?" -
It's not that simple. It would be irresponsible of me to just guess. Professional medical advice is best. Then, while waiting for an appointment, It's best to perhaps start reading through some of the books posted above.
Sorry it's so complex and that no one can just give you a quick grocery list for what you need. I do hope that some of the links will guide you. I do hope, though, that you can find a excellent LL doctor.
You might consider a LL ND (naturopathic physician) but be sure they are a member of ILADS so they really understand the science of the infection and what is required to treat it. Many LL NDs incorporate abx with supplements just as many LLMDs incorporate supplements with abx.
Your local lyme support group may be of help in locating a doctor. I know Texas is not swimming with LL docs of any kind, but the group can give you some ideas.
Rife may also a good option to consider, with supportive supplements to help your liver and adrenals.
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