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Posted 11/9/2013 5:59 PM (GMT 0)

This is my first forum, I'm sorry this is so long, but I'm hoping to find help. History: Spring of 2012 while foraging for fiddleheads I had a number of tick bites. Not my first and not my last, but this time I became ill with flu-like symptoms for about a week. Didn't think much about it. Never saw a typical bulls eye rash. A couple weeks later I had sudden swelling and pain in the base of my left thumb, then my right thumb. A few weeks later sudden extreme pain with mild swelling at the base of my left big toe. Went to ER they suspected gout, but x-rays and labs came back normal. Follow up with regular MD.. lots more blood tests, more x-rays.. all normal. Was told it was maybe arthritis. Retested in fall 2012 and spring 2013 tests still all negative. Bit by horsefly summer 2013, leg swelled knee to toes. Swelling comes and goes and still have burning sensation in that leg. Last few months; constant pain and tingling in neck, shoulders & thumbs, painful pressure points in arms and feet, pain and cramping in legs & hips.. fatigue and brain fog, sometimes I forget where I am when driving familiar roads, all getting worse. My chiropractor and massage therapist/herbalist encouraged me to find a LLMD and get further testing. I finally got in with a LLMD in Oct 2013, blood sent to Palo Alto, results below. LLMD says I have chronic Lyme. LLMD suggests selecting one of these treatments; Antibiotics (I've not taken antibiotics in over 10 years) or Zhang protocol or Condensed Cowden Protocol or Byron White Formulas. I've tried to read up on all, but the amount of information is overwhelming, conflicting and confusing to me. I'm scared treatment will make me worse or if I don't treat my pain will get worse and with either decision I won't be able to keep working. I'm only 54, I need to be able to work. I would be very grateful to hear any thoughts?

IGENEX IGM RESULT POSITIVE
CDC/NYS RESULT NEGATIVE

18 kda.  ++
**23-25 kDa.
28 kDa.-
30 kDa.-
**31 kDa.  +
**34 kDa.  IND
**39 kDa.-
**41 kDa.  IND
45 kDa.-
58 kDa.-
66 kDa.-
**83-93 kDa.  +

IGENEX-IGG-RESULT NEGATIVE
CDC/NYS-RESULT NEGATIVE

18 kDa
**23-25 kDa
28 kDa
30 kDa
**31  kDa
**34 kDa
**39 kDa  IND
**41 kDa  ++
45 kDa
58 kDa
66 kDa
**83-93 kDa

Posted 11/9/2013 6:25 PM (GMT 0)
Oh mainer, you said your Igenex came back negative - it came back Igenex POSITIVE! They have their own criteria b/c the CDC criteria is very limited. However, in order to be positive you still have to have species specific borrelia antibodies through IGENEX. And IgM antibodies indicate an active infection.

Sorry to hear about everything you have gone through and that you are not feeling well. You are 100% correct in that the information is absolutely overwhelming. Healing from lyme is very much a self-directed pathway with LLMD's giving you directions but you really having to lead the way.

If you are not comfortable taking antibiotics that is perfectly fine. From what I've read and I have contacted some of the makers of the protocols you suggest above Byron White and Cowden seem to be the most aggressive herbal approaches.

I understand the need for working. For me, the difference on abx was night/day. I would not have been able to work without abx. Then I added in herbs and homeopathy. I am now off abx and just continuing the others. It is different for everyone.

I would suggest cleaning up diet as much as possible and reading up about detoxing. Just learn a little bit at a time and hopefully you can make the best decision for you regarding treatment. I'm sure others will be on here shortly.
Posted 11/9/2013 6:43 PM (GMT 0)
Thank you opugirl. I won't rule out abx if there's a chance it will actually help kill the bugs.
Posted 11/10/2013 12:51 AM (GMT 0)
Hi mainerlady Welcome aboard. You need to find a LLMD in your area asap. Try a internist or walk in tx center to get antibiotics asap. You need to locate a LLMD for longer term care...possibly around 6 months or more depending on variables. The disease can progress into some very debilitating symptoms that can interfere with daily function. Tx will help you stabilize so you can carry on normal routines. Good luck to you.
Posted 11/10/2013 12:52 AM (GMT 0)
I would hit it hard right away with abx if I were you and maybe later add in the herbals. I had symptoms just a little longer than you before I was properly diagnosed. Started on biaxin/plaquenil plus anti yeast diet and meds in August and am already feeling 80-90% better. My llmd is switching me to tetracycline this week for the winter and says once the tetra is begun the real progress is made. He used tetra because it is extremely effective do to the ability to be administered it in high doses. He believes it is the most effective from his trials, research and lab work. He is a scientist TOO. Tetra is no longer available but can be compounded real cheaply for about 50$/100 pills so it is also very affordable compared to the other options. That's my experience so far. Keep up the research as everyone is different and respondses to treatments vary. I'd say the universal extremely important dynamic to healing is diet. STAY HEATHY.GOOD LUCK
Posted 11/10/2013 4:32 AM (GMT 0)
Thank you all for your thoughts and suggestions. I really do appreciate it and will take all into consideration!
Posted 11/10/2013 4:05 PM (GMT 0)
Thank you Kristeen. I have added the Synergy Protocol to the list for discussion with my LLMD. I like the idea of a month of detox to hopefully reduce the herx. Timing will be good as my job pressures will be a little less when it's time to hit the bug with the treatment.
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