posted
I'm doing so so. I am in the process of changing docs (yet again). The last doc seemed to be taking most of the direction from me and when I didn't have immediate success I found him distancing himself from me.
We were set to ramp up on a whole bunch of abx when I decided to take a break from meds to see long I could go without (something I had done before -- previous streak had been 3.5 weeks before the panic and anxiety set in and i was forced to go back on). The good news is that I've gone more than 6 weeks without taking abx. The bad news is that I feel like I still have the head creepy crawlies, facial numbness and tingling around the face and head and those symptoms in the last week have started to intensify. No panic and anxiety as of yet so this is a bit of a breakthrough I guess. I am still taking a bunch of supplements (Samento, Cumanda, Quina, Andorgraphis and some GSE).
I really don't want to go back on the abx roller coaster since no matter what I take the symptoms I have don't totally resolve....... but if the symptoms keep getting worse I may have little choice.
Note that my treatment over the past couple of years has focused on Bart as that was the only clear CDC level positive I've ever got on any tick tests. CD57 markers have also been noted as pretty low.
I did herx to the high heavens prior to going off abx so maybe I still need courses to finally resolve. I was taking Biaxin/mino for 5 days and 2 days Flagyl/Omnicef. I was going to change to amoxicillin/Zith for 4 days and add Flagyl and Omnicef for 3 days. Not sure if I should revert back to that plan. I have also made an appt about seeing my old doc who treats holistically but will use abx too. Its totally frustrating as it's been about 6 years for me fighting this with various course of abx including a 3 month IV stint (yes I know others have spent way more time fighting this and I'm sympathetic to that).
Also since sugar always stirs up my symptoms, I've been thinking that I should try an aggressive treatment for yeast overgrowth but not really sure that's the problem. I'm totally grasping at straws. I would think just by going off abx for 6 weeks would be a big help for the yeast if that was the problem (i.e. my symptoms wouldn't be getting worse the longer I am off abx). I've dabbled in some prescription yeast meds but nothing sustained (7 day course at the most).
I'd like to hear your thoughts on what my next moves should be.
Thanks, Chris
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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posted
I would advise finding an LLMD who really can help you. How would you know that?
If they seem to know more than you do about this illness and how to treat it. That is what I feel about my Lyme doctor -- she seems to be ten steps ahead of me every time I see her.
I feel very fortunate, hope you can get some relief.
-------------------- Judy G. Posts: 122 | From Minnesota | Registered: Dec 2008
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posted
My thoughts.. and realize, Im not a dr, just another lymie who has spent countless hrs researching this crud to death...
Anyway, my first reaction after I read your post was that..if you were reacting, herxing, to the abx before you stopped, then you really should go back on them again. Typically you want to remain on the abx till you are symptom free for at least 2 months, then probably another month just to be sure. Basically at least 2-3, 28 growth cycles.
If thats not something you wish to pursue, then perhaps you need to have further testing done to see how your immune system is functioning, ie: CD57 testing. If youve been tested before, you can test again to compare base lines to see how youre doing now. A low cd57 would indicate a problem with your killer tcells and immune funtioning.
My other thought would be that although you're taking different supplements, you didnt mention some of the more obvious ones such as magnesium (for the twitches, shakes, cramps), B12, D, fish oils, probiotic, digestive enzyme, etc, etc. While those other supplements will help some areas (just like olive leaf, oregano oil, cats claw, spiro, garlic, etc.), you also need straight forward vitamins/supplements to maintain a healthy diet.
Speaking of diet, I would advise to go back to a yeast free, sugar free diet. If youve been on abx for a long time, it doesnt take much to get yeast running again in your system. A good probiotic, on top of a yeast free, sugar free diet, with good meats, veggies, limited fruits (they contain sugar as well), should help.
Finally, if youre unhappy with your llmd, seek out another one that you can trust with all of these issues and questions. Lyme trx is a marathon, and a change of life.. hang in there!
Posts: 514 | From . | Registered: Apr 2008
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posted
Judy: Agree that I need to find a good LLMD. Easier said than done. Your doc isn't based near Philly is she?
Wimenin: I do have some baseline CD57 tests from early 08: in Jan it read 26 and in March I was up to 57. My current doc doesn't really believe in that test so we never did it. I did also have some high readings in my TNF alpha and TNF-A lyme antigens although my LLMD at the time really didn't know what that meant. They were under the heading: Lyme induced cytokines.
I hear you about the abx but I just seem to herx then plateau and not resolve all the symptoms. I'm hoping that being able to go 6 weeks+ off means that I have made a dent in my co-infection bacteria since I've heard that you tend to relapse quicker with co-infections (previously I couldn't go more than 1.5 - 2 weeks with out and my highest period without was right after IV abx -3.5 weeks).
On supplements I do take some other more normal supplements like probiotics, fish oil, vitamin C. Just filled a prescription for B12 injections and I do take some magnesium before bed. What digestive enzymes do you recommend?
Agreed on the yeast free diet. Thats been hard for me. I run and my body seems to crave carbs for fuel. I'm looking at this banana on my desk here at work right now and boy does it look delicious!
Thanks for the input.
Chris
-------------------- dx in Dec 2003 tested 2x positive for bart Lightly Chelating 3 weeks off abx and 1 week on:
10 day course a month: Plaq/Ceftin/Rifampin/Biaxin with Tindamax on last two days Posts: 187 | From PA | Registered: Apr 2008
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Perhaps you beat down the bart, but there's still some lyme left
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
I've been out of town -- sorry haven't been back to the board
Also, sorry that my LLMD is not in your area.
This disease is so frustrating, I know when I am on the heavy duty abx it does indeed suck. I am looking forward to some relief soon.
Good luck on your journey.
-------------------- Judy G. Posts: 122 | From Minnesota | Registered: Dec 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I hope you see some progress soon! Interesting combo .... it's interesting how they are being pulsed and the way zith and biaxin are being taken together. You're on some strong meds there!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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