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[Patti D]

Wow,

That is quite a story Maz. I so can picture the huge wards of 20 patients per room. That is how I started in nursing so many years ago. We are moving towards a national system here. I know med students who are being steered nicely towards family practice and away from specialized fields. All the more reason to get these different specialized medical associations under wrap(infectous disease docs:angry:)

I am glad you asked about the supplements, vit c. I am pretty non-compliant lately on extra pills period. Call it a minor temper tantrum as I am sick of being sick. I have been playing with the foods I eat and trying to find out if they increase the joint pain. I am concerned about the yellow dye that may be in the multi vitamin which has 500mg of C. Now I am thinking accupunture and just had some massage. I exercise ,I don't exercise. Quite frankly, AM I HERXING TODAY OR WHAT!!! I can't seem to find any peace in any of this yet I am so so grateful I am not where I was 6 months ago. Do you ever have a day like this?? :headbang:

It is definite bruising but I guess it could be from all of the yard work/gardening.

Well enough whining. At least my joint pain is gone now just this head game:doh:

Happy days

Patti

 

[Patti D]

Maz,

Forgot about the pulse dosing. I don't have an AP doc. I have a reluctant rheumy, who I have seen three times since August, 2007. He first told me I did not have RA. I saw him as a follow up/second opinion when I fired the first rheumy who refused to believe I have lyme because my western blot was negative. This rheumy I saw 2 months after the one month of doxy was over. I felt great, had no joint pain or swelling and went to him only because of the elevated RF (191) He said he did not need to see me again and that I did not have RA but 4 months later, Dec. 2007 was when I developed symptoms all over again so went back to him. Next visit got the brochure and bloodwork. 3rd visit bloodwork was normal after one month of mino and now I don't see him again until October. I suppose I could start playing with the mino dosage myself as I am really on my own anyway. When I skip a dose which I sometimes do I feel pretty good. Unlike most on this board , I think I herx more when I am on the AP not on the day I skip. Does that sound right?:?

Happy days!
 

Patti 

[Maz]

[user=27]Maz[/user] wrote:

[user=287]Patti D[/user] wrote:

Unlike most on this board , I think I herx more when I am on the AP not on the day I skip. Does that sound right?:?

Yes, this has been exactly my experience, too. Maybe it's a pathogen load-related thing?

My off days were less painful than my mino days in the beginning. When I first started pulse dosing, having switched from 200mg a day (I couldn't tolerate that dose), within a couple of hours of taking my dose, I'd start to ache and worsen…the next day – my off day – I'd wake in some pain, but it would dissipate by lunch. This pattern remained the same way for the first 4 months or so, but lessened with time. Now, it's harder to distinguish between on and off days and herxing/flaring is more random or comes with hormonal shifts.

It would be hard to know what to do when you're doing so well on daily dosing. This is just my own personal “layman's” opinion, but I always tend to feel that the least amount of any medication that is still effective is preferrable (in the case of mino, lessening the possibility of gut issues, candida, hyperpigmentation and need to change up abx after a few years, etc), but dosing adjustments (lowering or upping), at any time, can bring challenges before finding the right personal fit. The daily dose is said to be more immune-modulatory, so lowering it could increase your perceptible herxing levels. On the other hand, some do better with pulsing, like me. It's not an easy decision to make, especially if you have to wing it alone without an experienced doc. Also, you need to function with your hands-on, physical job, so you also have that consideration. I really wouldn't want to influence you either way by my experience alone. My situation is also somewhat different in the respect that I had been on such heavy combos of abx for a whole year, so my sensitivity levels were just getting worse by the day and pulsing was my only option at that point.

I have read of some people here on the BB who do wing it alone, just satisfied to get their mino script and figure it out from there (usually if they don't have an AP doc to help them)….but this does bring a greater an element of personal responsibility with this. Generally speaking, it's not uncommon for daily dosers who reach remission (both physically and with bloodwork), to gradually lower their dose to a maintenance dose for a time to see how they go.

Okay…I'm really rhubbarbing today…gotta get a grip and get dinner started! Have a great weekend, Patti, and hope your weather clears up. We seem to be in the wake of your weather pattern, getting what you get a day or so later….so I guess the rain is headed our way again. Have had gorgeous summer weather in the past two days, so must count those blessings.  

Peace, Maz

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