Subject - Suggestion of my current antibiotic treatment

Greetings

I am interested in any feedback regarding adjusting my antibiotic regime (or leave as is)

I was diagnosed with Lyme disease back in July of 2013 (however my Lyme systems went gangbusters in May of 2012). I started taking doxycycline beginning of August 2012, and then added Flagyl near the end of September. By October, I was feeling the best I have felt since the symptoms started. Practically all my inflammation was gone, my energy levels were much better, and a lot of my neurological symptoms were lessened.

By late November, my ND suggested to take a break from antibiotics, as I was doing so well. Around the time that I stopped my antibiotics, I had to get tooth pulled. Also about a week after getting my tooth pulled, I ended up catching the worst flu I ever had. Subsequently, many of my symptoms started to bubble back to the surface – fatigue, achy muscles, unbalanced, tinnitus, vision issues, etc. I also added a new symptom that I didn’t have before. I started getting this sensation like I was on some sort of amphetamine, or like I drinking over a hundred cups of coffee. This horrible, anxious feeling.

My ND put me back on antibiotics mid January. We initially started with minocycline, as we knew it crosses the blood-brain barrier better than doxy. However after about a month of that abx, we decided to take me off it as amplified the anxious feeling tenfold. I have since been on a combination of Claromycin and Tinidazole.

I feel like I have somewhat plateaued on the treatment of Claromycin and Tinidazole.
I still deal daily with achy muscles. For some reason it is always really bad a night. It’s so bad it wakes me up at night (always around 2am). My body feels like I have done about 20 marathons the week prior. The achiness is unbearable.

My tinnitus is still there. It is definitely better than prior to starting antibiotics, but not as good as when I was on doxy. I feel like on my current abx treatment, the tinnitus has plateaued. On some days the buzzing is pretty bad, whereas on doxy it got to a point where it was hardly noticeable.

One of the worst issues is whenever I walk or when I am a passenger in a car, my vision goes all wonky, my eyes start to throb and my head feels numb. As for the vision issue, it is almost like the data that my eyes are passing to my brain just isn’t getting processed properly. I can see and everything is clear, it’s just that whatever I am seeing is overwhelming. My vision is not fuzzy but I just can’t process properly what I am seeing. This only happens when my vision is in movement. If I am still and looking at something stationary, I am more or less fine.

I am unsure if I should stay on the Claromycin and Tinidazole. I don’t know if I still feel crappy because the abx combo is actually working and I should just wait it out, or should I go back on doxycycline a as it seemed to improve my symptoms better in the past. Should I be replacing the Claromycin with doxycycline, since I appeared to do better on the doxy? Or should I replace the Tinidazole with Plaquenil, as I hear many people benefit from that combo. I also hear that the combo of Azithromycin, Plaquenil and Amoxicillin has worked well for some people.

I have read that there is some risk with vision damage with Plaquenil, so that is definitely a concern. Since I am already dealing with some vision issues, I am a little hesitant to try Plaquenil, however it seems to go hand-in-hand with Claromycin. I have also heard that Ceftin works well for some people, however unsure what abx combo is good with Ceftin.

I feel like I am getting close to the end of this Lyme tunnel. If I can just get my achy muscles to go away, resolve my vision issue (would love to be able to drive again), and have a quiet sleep without my ears rigging, that would be simply amazing.

Any recommendations on updating my antibiotic protocol would be wonderful. Unfortunately I live in Canada (British Columbia), where there are absolutely no LLMD’s. My naturopath is great in the sense that he is doing his best to help me, but he is not an expert on Lyme. So far it has been more or less a “trial and error” approach. At least I can say that I have had some improvement while on antibiotics. Also, if anyone can recommend a LLMD in Washington state, that would be wonderful. It would be the closest state from where I live.

Thank you for any feedback

before I answer your question, may I ask you a question?

when your dr. stopped the antibiotics the first time you were taking them (November 2012), were you completely symptom free? if you were, how long did you take the antibiotics for past the time you were symptom free?

I've been on Plaquenil for a couple of years. No issues. It is actually pretty rare to have an eye issue but docs want you to get checked just as a precaution. Don't worry too much. Just get your eyes checked.

I have to say, I wasn't 100% symptom free. As I said, my ND isn't really experienced with treating Lyme. I believe his thought process was that I was on antibiotics for three months and was making good headway, it was time to give my body a break. We know now that you should be symptom free for at least two or three months before stopping the antibiotic treatment.

Chapelle said...
before I answer your question, may I ask you a question?

when your dr. stopped the antibiotics the first time you were taking them (November 2012), were you completely symptom free? if you were, how long did you take the antibiotics for past the time you were symptom free?

Hi LymePickle

Is there a method in this forum for you to send the contact for the ILADs naturopath that you know of in Richmond BC?

Thanks!

LymePickle said...
Hi Lymon,

There is an ILADs naturopath in Richmond BC and he is really really good. You might want to consider them for treatment, he specializes in chronic diseases and tickborne infections and runs all the kinds of treatments including herbals, prescription antibiotics, ozone therapies. He is also very cost effective.

There are LLMDs in Seattle and some good ones. However I went there and got some much much higher prices. But it is good to get another opinion. Also the Doctor in Seattle has good experience treating Lyme.

The good thing about travelling to see either of these the LLMD in Seattle or the LLND in Richmond is you only have to travel to them once to get under their treatment. You can have follow up consults by skype or phone with them. But again for me I find the LLMD to be more expensive.

I am on the tinidazole myself. I'm not sure if you are pulsing or continually dosing, but I find on my 'off' days I will feel much much better. I think the burning is actually herx die-off reactions. I was just getting it in my thighs and knees.

Also my experience with the minocycline is that it at first caused lots of dizziness, and mental problems, but after it doesn't do that anymore. It's like my body adjusted to it and it keeps the brain fog away. I think these 'side effects' you got were the neural issues from the initial reaction of the bacteria to the medication. Now I can just take them with no reaction, it just keeps me well.

I plan on adding in Plaquenil myself in addition to my regime. Apparently it is generally well tolerated, if you get any eye problems you can discontinue the medication to resolve them.

Strange - clicking on the envelope for LymePickle does nothing. The envelope appears to be greyed out. I can select yours however and do get your e-mail. Any ideas?