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Posted 5/2/2012 11:13 AM (GMT -5)
Just wanted somewhere to express some nervousness about starting my treatment regime where other Lymies can understand what I'm going through.  I started Monday, and so far so good.

Here's my treatment regime... not sure what to expect:

  • 1st 10 days - Nystatin
  • 1st abx on day 11 - Plaqunil
  • 2nd abx 5 days later - Biaxin
  • 3rd abx 5 days later - Doxy (work from 1 twice a day to 2 twice a day over 15 days)
  • 4th abx once on full Doxy regime - Flagyl

Along with all of these I am taking Probiotics, Fish Oil, Evening Primrose Oil, Low Dose Naltrexone, CoQ10, Alpha Lipoic Acid, B complex vitamin, multiviatamin, ginger capsules, Magnesium, B12 shots and FolaPro.

I'm also getting regular massages and acupuncture, and following a strict no sugar/no yeast diet.

This seems like a crazy regime of meds, but I'm going to do whatever it takes to get better... I'm sick and tired of being sick and tired, and I want to get my life back.

One question I have for those who are on treatment plans... when did you get your first herx... was it related to a specific antibiotic or treatment?  Just trying to prepare myself for the nasty things that could happen.

Thanks

Kristin

Posted 5/2/2012 12:50 PM (GMT -5)
Hello!

I'm pretty new to treating Lyme. I'm about 8 months in. I have taken most of your meds. Nystatin was easy for me. I'm on that long-term now. I had the liquid at first which was gross I would suggest the pills if you are able to take them. I take a pretty high dose and have no issues with that one.

Plaquenil I have not taken yet, but I've heard mixed reviews. I will likely be starting that in the near future. The one thing I worry about with that one is the slight risk of eye damage. I think that people sometimes get regular vision exams with that one. Otherwise I hear it's pretty safe and people take it long term for other things like RA and Lupus.

Doxy is a tough one for me. I've taken it twice. The first time I took it alone (from a regular doctor for 28 days). I was really nauseous but I felt better in week 2 then I started going downhill again. I think it was a herx. Lots of pain, fatigue, new symptoms etc. I'm on it now again and there are some days where I throw up just thinking about food. I get pretty sick and weak from doxy and I'm only on 200mg per day.

Flagyl I have not taken, but I've taken Tindamax which is similar. I only took it for a week, but I had no major herx or problems with it. The main thing I worried about with these two is the cancer risk, but then I figured that Lyme has also been linked to Lymphoma so I can't really avoid that risk anyway.

For vitamins I get IV's once per week. I would like to do B12 shots and LDN I think they would be very helpful and have very little risk. I also take ALA, NAC and milk thistle because I have pretty bad liver issues on antibiotics.

On doxy the herx took a while to hit, but on Mepron I got a terrible one within 24 hours. My herxes tend to last a really long time. It usually leads to me having to stop the treatment because of liver issues even despite INTENSE liver support/detoxing.

I do the no sugar/dairy/gluten diet as well. I have never taken any medications for anything in my life so I was extremely worried about taking all this stuff for Lyme. It has taken me a long time to get used to the idea and I'm still hesitant. However, I find that by researching, I'm able to rationalize that I can't just ignore it like I was doing for years. I had tried herbs and they weren't effective so I have to trust that my LLMD knows what he's doing lol.

Your protocol sounds very well-rounded. You must have found a pretty good LLMD. Good luck!
Posted 5/2/2012 1:26 PM (GMT -5)
Hi Summer 3... it's good to hear there are others out there willing to share their treatment and experiences... thanks for your response.

The Doxy phase for me is 1 100mg at breakfast and dinner for 5 days, then 1 100mg at Breakfast, lunch, and dinner for 5 days, then 2 100mg at breakfast and dinner... that's a total of 400mg a day at the full dose, so I'm defiently worried about nausea... I have a "ticky-tummy" to beging with, so that's why I'm nervous about all the drugs.

What were your herx reactions like?

Kristin
Posted 5/2/2012 8:35 PM (GMT -5)
The last herx I had was on mepron/doxy and it was the worst so far. I was extremely sick just from standing up for a few minutes, freezing cold and shaking uncontrollably, unable to eat or move because of extreme weakness and muscle/joint pain.

I was really dizzy with heart palpitations and burning hands. I also had a fever which felt really high but was only 99.9. Although my temp is usually 95 or so. I was extremely upset and had a crying breakdown lol.

I've had other pretty big problems though even while I was off everything. I had seizures last month and lost the feeling and ability to move my hands several times per day along with all my "normal" symptoms.

I have to force myself to eat something with doxy or I will throw up all my meds/supplements.
Posted 5/2/2012 10:08 PM (GMT -5)
I agree that sounds like a really well-rounded approach...I only want to step in and be (hopefully unnecessarily!) cautious and recommend keeping notes on when you start each new thing, that way if there are any problems you'll know what's what.

Herxing simplified: expect the unexpected! It all depends on so many different factors...some people have strong, specific herxes, and others sort of feel the same steadily, sometimes a little better, sometimes a little worse, while going through treatment. A lot of weird things can happen during treatment, after a little time you'll probably notice your own specific patterns and learn to recognize what herxing means for your body. Just remember to keep your detox systems flowing!

I'm really glad to see the strength and determination you have in the face of all of this - a great attitude like that can have such a huge impact!
Posted 5/3/2012 7:45 AM (GMT -5)
Thanks Summer3, I'll be sure to watch for those types of reactions. Still just on the Nystatin now, but yeterday and today I've had heart palpatations and my left hand feels cold and I can't fully feel it... it just kinda' aches. Most of my symptoms are on my left side, although I have some doozies on the right too. :(

Borderlyme... I totally agree with the notes on reactions... in fact prior to going to the LLMD and getting the dx... I had months of daily notes on a speadsheet so that I had that available for her to review... I found it was really helpful in determining when my flares were.

Thanks for the support!
Kristin
Posted 5/3/2012 9:26 AM (GMT -5)
Just want to point out a good coping strategy to help you through this:

Rather than worrying about how you might feel, put your energy into making some simple preparations. For example, streamline your chores, simplify your social life, prepare some good healthy meals ahead of time and pop them into your freezer so you can just grab them when you don't feel well enough to cook. Ask a couple of friends to "check in" on you -- just a call from someone special can help you through things. And set up a little simple project that you can accomplish if you feel puny (mine was sorting through old photos).

Hope it all goes smoothly for you!
Posted 5/3/2012 10:26 AM (GMT -5)
Great ideas achievinggrace... I like all of those. I'm super luck to work in a small office that is VERY supportive of what I've been going through... I kow... totally not the norm, but I thanks heaven's for it. In fact, the girls in the office has taken it upon themselves to study what I can and can't eat on the Lyme diet, and each come up with a few meal ideas including the directions... how awesome is that!?!
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