Better. Worse. Better?

[kali]

Hi guys and Happy New Year to everyone. I hope we all get everything our hearts desire in 2012.

-So…I started my treatment with oral clindamycin and doxycycline in late June 2011.
-I responded well immediately and was even able to start exercising again.
-I got what felt like a bladder infection in October and as I tested negative for this the Dr. treated me with 2 doses (first one had no effect) of diflucan which over the next few weeks left me very toxic and herxing. I didn’t realize that most of what I was experiencing was a herx – I just thought my antibiotics had stopped working so I continued taking them at the same pace and feeling worse all the time.
-In November I had my doc switch me to Minocycline. I started on a very low dose and built up. More herxing…
-Finally realize I cannot take as much of the antibiotic as before since it appears that my body has become very sensitized.
-Unable to even tolerate probiotic without my immune system going on high alert.
-Take a break for several days and feel much better. Very sure now it has been terrible herxing…chills, flu-like sx, increased pain and inflammation, general malaise.
-Now we are in January and I have not gotten back to where I was in June/July. I feel like pandoras box has been open…
It is very odd that even though I have been miserable on many levels and somewhat frustrated since I felt so well before I am still holding out hope. I assume I have hit a significant ‘die-off’ stage? My body feels so ‘turned against itself’ right now. I have even resorted to several doses of prednisone… yet a part of me knows I am getting better.
I do have a few questions:
1. Why are my sx so increased after exercise? I even get very flu-like sx – like a herx. My body is ready to flare at a moments notice! Terrible pain.
2. My pain has become more widespread. Is this herxing or toxins? Or both?

I have tried to talk myself down with good success most of the time – but today after a light workout I felt so bad again that I needed some encouragement and feedback. I know this is not a black and white process but any feedback would be great 🙂

Thanks to all,
Kali

[PhilC]

Hi Kali,

What probiotic(s) are you taking?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[lynnie_sydney]

Hi Kali – you dont say what dose and how often you are taking the mino. It would help others respond with their wisdom if you could give some details of your regime. You may need to dial it back due to hypersensitivity.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[kali]

Good morning all,
I want to clarify a few things so I don’t misrepresent myself as being sick all the time. I am having some very good days. I keep a journal – which is very helpful so that I can look back and make associations with the days where things aren’t so great. The blow has come because I was so well all summer and now I am super sensitive in many ways that I wasn’t then. But I want to highlight the good things that are going on too:
-My fatigue is MUCH better
-Depression is very minimal – but clearly still have anxiety when a bad flare occurs 😉
-Food sensitivities are much better unless flaring or herxing
-Pain is better in many ways – but I still get ‘freaked out’ when it comes on out of the blue since this was so much better for 3 months.
-Ability to handle stress has gotten better….or I’m learning really good coping skills! 🙂

Phil and others – I have taken several probiotics: Pearls, PB-8, culturelle, Ultra Primal Defense. They have all slowly turned on me. My DC muscle tested me for Pearls many months ago and I tested poorly for it but not UPDefense. But now even that gives me major, painful sx. I suspect it is ramping up my immune system. My body may just see it as an invader at this point. But the good side of that is that at least my immune system is working. It’s just slightly confused – although there are many studies about probiotics and they may not be a great thing for those of us with ‘autoimmune’ issues. http://www.nutralegacy.com/blog/general-healthcare/top-10-probiotic-side-effects-everyone-should-be-aware-of/
This is just one of many articles that cover similar points.

I feel like I may also need to add another abx since my infection started as a focal one and I suspect it was more strep based. My doc did a strep titer which was negative – but I know there are alot of false negatives with those and I still think since it was a chronic low grade infection that my body was doing it’s best to mask everything. I actually don’t have positive testing for RA – so maybe I should just call it rheumatism in my sig line. All I know is that AP has helped and that all my sx point to something along the lines of a connective tissue disorder. Dr. S agrees with this as does my PCP.

I will keep everyone posted. As for now, I need to do my best to keep my immune system from going into high gear. That means I need to be careful with my dosage and frequency of abx, my amount of exercise and of course my stress level.
I will have to cut out my probiotics for now as they are certainly detrimental. I live at the foot of the cross with my diet – so hopefully on these low doses of meds – I won’t run into further complications. I have also started (LOW dose) of immuno-pro so I’ll see how that goes…

Thanks for being here for me,
Best wishes to all,
Kali

[Parisa]

Kali,

I have a few thoughts. Even though minocycline is a cycline just like doxycycline it is a different form and might hit a different variation of bug than the doxy thus the increase in herxing. It could be that you need to very, very slowly ramp up on the mino. On the other hand, because you were doing so well on doxy and clindaymycin you could consider going back on those. It may be the introduction of diflucan and mino which has caused you problems.

Do you tolerate dairy or is that on your no list? If you can, perhaps you would tolerate kefir which has alot of beneficial strains. You can make it out of goat’s milk or cow milk. Dom’s Kefir site has alot of good information on how to make it and how to obtain the kefir grains. http://users.sa.chariot.net.au/~dna/Makekefir.html

As far as exercise, Dr. Burrascano’s Lyme treatment guidelines discusses which infections (babesia, HHV-6, EBV, CMV) become worse with exercise and outlnes a specific way that one should exercise. See: http://tinyurl.com/8xqska8

[kali]

Hi Parisa,
Thanks for your input. I believe you are right and that firstly the diflucan was WAY too much to handle at once. Nothing in my detox system was prepared to handle that. I have always felt that there is some sort of fungal component to what I have going on. Not necessarily over my whole body since I have been so strict with my diet for years now but definitely with this ‘cacoon’ of infection that has wreaked havoc in my neck and other areas. It was just that instead of stopping everything at this point- I kept plugging away and on top of that thought my doxy was no longer working – so switched to what is probably the much stronger abx – mino. So in all of this herxing for weeks on end, I resensitized my already sensitized body with this bacterial ‘allergin’.

I truly appreciate the exercise information. I do have EBV and did not know that I should not do aerobic exercise. Actually it’s the repetitive rep stuff that really hurts me. Maybe I am just going about it too vigourously. I do use free weights for upper body and it says to steer clear of those. Maybe I can try body weight stuff…or maybe I just need to back off until I can regroup…easier said than done!

I do not eat dairy except for ice cream about once a month. I am not sure how I would respond to kefir at this point – but everything seems to be causing symptoms of die-off. I did my first dose of immuno-pro this morning – about 1 gram- and about 2 hours later I had about an hour of herxing sx. Not too bad – but glad I did not take more than that! I may give a small bit of Kefir a try. Do you make your own? Is it alot of work? I am sure it is probably worth it. 🙂

I hope that you are well and thanks so much again Parisa,
Kali

[Parisa]

Kali,

I made goat milk kefir for my husband for more than a year. It’s not difficult once you get the hang of it.

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