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Really hate these abx

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Posted 3/2/2012 10:02 PM (GMT -5)
I've been on abx about a week, I just hate the reactions. I know everyone says it's a herx and a good sign. I've done natural healing methods for most of the last 18 years, ever since I got sick. But I never knew what was wrong, so it was always a shot in the dark. Taking long term pharmaceuticals goes against most everything I believe in when it comes to my body. I know they help people, I'm sure they're killing things. I just hate how I feel, I was feeling so much better before.

I'm seriously considering going to a Naturopath that has experience with Lyme. I know there are people here that are treating their Lyme without abx. I also feel like I should have done more to detox and cleanse my liver before jumping into abx. I just started a new job and I can't risk losing it with getting sicker like I feel.

I am not saying that abx are bad, they just feel like a bad choice for me. Intuitively, they feel wrong for me. It's making me nuts.

I don't mean to be a downer, or sound negative. I just need a sounding board. For those of you not using abx, how is it going? I'd love to hear anyone's thoughts, not just people that are going holistic.

I'm going to sit on this for a few days before deciding what I want to do. I'm not going to contact my Dr right away. Just confused
Posted 3/2/2012 11:43 PM (GMT -5)
I think it's a personal choice to go for herbs or antibiotics. I completely understand your feelings about antibiotics, I have felt the same way.

I was initially very anti-pharmaceutical. I have never needed to take prescription drugs other than short courses of antibiotics a few times in my life. I wanted to treat Lyme using only herbs.

I went to a few ND's and spoke to several LLMD's and none of them felt like it was a good idea for my situation to do herbs alone. So I ended up going with antibiotics for now and I am hoping to switch over to more natural treatments as soon as I'm able to.

I also don't feel well on the antibiotics and I know that they are affecting me negatively in some ways. I am hoping that the positive effects will counter the negative and that I won't continue to decline.

Herxing is a pain, especially when you need to work or care for a family. However, I think that people that do herbal treatments also experience some pretty bad herxes from time to time.

I know that I feel really overwhelmed and I doubt my choice to go with antibiotics all the time. Sometimes on bad days, I even ponder treating at all.

However, when it comes down to it, I think that the most important thing is to find a LLMD that will work with you and try to implement the least risky yet effective treatments possible.
Posted 3/3/2012 12:01 AM (GMT -5)
I agree. I think everyone's body and mind are so different that you have to search until you find the right treatment for you. I remember going to the first lyme doctor and he asked me if I would consider accupuncture. I thought he was a quack. Now, I'm not so quick to judge. I never did end up trying accu but wouldn't think twice now. If you had ever told me that I would be taking antibiotics for years along with numerous herbal supplements, I would never have believed you. However, I realize now that the mind and body are such finetuned machines that work together.

It is a long slow journey. Patience and positive thinking are a must to get well with lyme.
Posted 3/3/2012 8:55 AM (GMT -5)
I appreciate everyone's responses. After a miserable night with 4 hours of sleep and feeling so depressed that I can't stand myself I decided that maybe antibiotics are the way to go, but I'm not ready for this. I feel toxic, and I don't think things are clearing out fast enough. In the past I have done some pretty extreme cleanses and I feel like I need to do that before I consider treatment with abx again. I also think I picked a bad time to start, new job, carrying a full time course load and then to add this on top of it is just too much. The depressions is horrible and I don't want to be put on an anti-depressant and find myself going down that rabbit hole.

When I found out I had Lyme and pretty much jumped into treatment, when I actually was getting decent results from diet alone before. I feel like I gave away the control to my health.

I feel better with this decision and maybe I'll regret it later. Right now, it feels like the right thing to do. I've had this thing for like 18 years, during that time I've had some pretty fabulous periods of health, I just never maintained the lifestyle because I didn't know what was going on. Now I know, I have to at least try my approach and then revisit the drugs if needed.

I really appreciate the comments from everyone. This is such a supportive group
Posted 3/3/2012 9:04 AM (GMT -5)
LoveHealth--Ok so what I'm going to say may not mean much, because I haven't even started my abx yet. I'm going to this weekend.

I too feel the exact same way you do. I feel like I'm so scared of taking them and getting worse. My LLMD said that things were going to get worse. I turned numb when I heard that. I totally freaked out inside. I don't want to think about worse. I am so bad already. My little body can't handle worse. But he also said that if things got too bad, we'd back down and go back up again when I'm stronger. Have you spoken to your LLMD about that?

I too wish there were herbals to do alone, but my dr didn't seem to feel happy about that either. I don't think you should give up yet. I think if it's that bad for you, call your LLMD and ask him to back down a little and go stronger when you are ready.

Of course it's your decision and you are in control of yourself at all times. So you need to do what's best. But remember, I think herbals can give strong herxes too and 18 years is a long time to go without treatment and those little buggers are getting stronger each day. They want you to give up. They want you to stop.
Posted 3/3/2012 9:50 AM (GMT -5)
Good luck with whatever you decide to do LoveHealth. I hope that you are able to find some relief. I also started treatment at a time which is not ideal especially financially and stress-wise with my schedule between college and work. I figured it's probably never going to be a good time for me so I'd might as well get it over with lol.

I think that a LLMD or LLND that matches up with what you want to do is needed to help you to feel more comfortable with whatever treatment you decide on. There is a huge difference between LLMD's. They are not all alike.

I know that I would not have gotten along with one of the LLMD's that I spoke to. He was too aggressive with antibiotics, and he expected patients to take what he suggested without much leeway for alternatives. There are some medications that I do not want to take, so this would not have worked out for me. I needed someone that combined antibiotics and alternatives.

Finding or speaking with the right LLMD makes a huge difference in the stress that accompanies treatment. It may be worth trying another LLMD.
Posted 3/3/2012 9:59 AM (GMT -5)
BTW--LoveHealth..I work full time too so I completely understand what you're saying. I have no choice but to work. We really can't afford for me not to..and now with treatment and LLMD, no way I couldn't.

I agree with Summer that your LLMD should work with what you feel comfortable, but at the same time, if he/she has excellent reviews and history of helping Lyme patients, then you have to give some trust too because this is just one big uncomfortable situation. I don't think being comfortable is really part of the deal of healing. I could be wrong, but that's what I gather. I certainly don't feel comfortable with some of the things I was told, but I am going to try and be open minded because when I google his name, he has amazing reviews from Lyme patients. Like 30+ Lyme reviews saying he saved their life. Also, someone on here has been healed by him. I have to try and trust. It's so hard to do when we have all been decieved by Dr after Dr. UGH. Makes me so darn mad.

We are here and we support you in whatever you choose to do.
Posted 3/3/2012 11:01 AM (GMT -5)
I agree with SleeplessNJ also. I think you have to have some trust for the doctor that you choose. I know for me, trust is EXTREMELY difficult, but I am getting better with it. I was someone that never went to doctors before I got sick with Lyme. I'm starting month 3 of treatment and I have had more doctor's appointments in the last 6 months than in my entire lifetime.

I don't feel comfortable taking medications of any kind, but my LLMD was intuitive enough to be able to recognize some of my concerns and address them so that I could consider some of the treatments that I was previously completely against. I think making a patient physically comfortable during Lyme treatment is very difficult and maybe even impossible. However, I think making a lyme patient cognitively/emotionally comfortable with a specific treatment is helpful and lessens the chance of the patient quitting treatment altogether.

I think in my situation, if I had gone with the LLMD who was more aggressive and well-known, I probably would have stopped my own treatment by now. It wouldn't have been the LLMD's fault, it's just my personality. Knowing the side effects of the medications and potential permanent effects, combined with the fact that there was little room for flexibility in his protocol, would have gotten to me very quickly.

I can also relate to the work/college situation. I find sometimes that by the end of the day or the week, I'm so tired with so many symptoms that I don't want to do anything but lie down 99% of the time that I'm "off." This happens whether or not I'm on or off antibiotics.
Posted 3/3/2012 2:51 PM (GMT -5)
LH. I feel your pain. Just getting started on treatment always sux. I am been where you are and my only advice is that to try and settle your mind and go to the treatment - the sooner you treat, the quicker you recover. During the treatment process, you will second guess yourself a hundred times. Should I be on abx? What abt herbals? What's causing this symptom? What's causing that one? Should I reduce dosage? Should I try something else. Why me?

We have all been through this and you'll have to find what's best for you. But you have to trust your medical team for at least a little while to figure out how to adjust. A week is probably not enough time to see how things will go on a particular treatment strategy. This process of getting better from Lyme takes patience, perseverance and time to slowly work through and over the hurdles we all encounter. A positive, determined and patient mindset is paramount to getting there.

Come here to vent, share experiences and how you're doing and just to find support during your journey. I was probably the most impatient and anti-medication person you would ever meet. But, I tell you, the abx have killed off 35+ years of Lyme in me at a rate3x faster than any of the hundreds of patients my LLMD has seen in her career. They may not work for you but you have to give all the treatments a chance before you try something else ( unless you ate allergic ). I eventually augmented with Herbals as well and I see the benefits of both the abx and herbals...but thats my own response. Lyme is so unique to each person, your path may be different. Just know that you'll find that path with patience and time.
Posted 3/3/2012 7:15 PM (GMT -5)
Ok, so if I am repetitive I am sorry- I can't focuse enough to read all the responses today. But here are my thoughts:

1) I currently see an ND. I love her. But she uses antibiotics- and when I first found her, she told me that in her opinion both natural and antibiotic treatments worked, but antibiotics were much faster. At that point I was sick enough she wanted me on antibiotics.
2) You HAVE to trust your doctor. If you don't trust them, either talk to them to try to get more comfortable or find another doctor
3) My ND does treat a lot of people with natural methods only. For a while, she couldn't prescribe antibiotics, so anyone who couldn't afford to the US had to use natural treatments. even now, she still uses them- especially if people don't want to use antibiotics. If you find a good ND they can get you better.

Antibiotics ARE really tough. But for myself, I decided they were the way to go. I just felt like they had a higher chance of success and would work better. But it is a personal decision, and since we still know so little about Lyme, there is no one right answer
Posted 3/3/2012 7:35 PM (GMT -5)
Thanks to everyone for the thoughtful responses.

The LLMD has already backed off on my dosage. I do think she's a very good doctor, however, this is her protocol.

I have always found that when it comes to medication I will usually get what ever side effect is likely. My body is really sensitive. I can't tell the difference between a herx and a reaction to the medication, but it just felt more like a reaction to me.

To tell you the truth, I was so depressed the last few days, especially in the evening when I was tired, it scared me. The thoughts going through my head weren't healthy. It was pretty much the final point that drove me to stop taking them. I've had depression with Lyme, but it was never this intense. The stinging neuropathy is also making me nuts.

Today was my first day off of the abx, a friend of mine took one look at me and asked what I did different because it was the best she had seen me since I started treatment. My head was clear and I had energy.

I'm taking some herbs, and am eating super strict. I'm looking into some natural solutions and I'm looking for an ND that will work with me. I feel a lot better about this now that I've decided. I may go back to abx at some point, but only when I feel like my body is strong enough to handle it.
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