For mariemcminn – your Personal History post

[lynnie_sydney]

After six weeks, I don’t see any improvement; I’ve only gotten worse. My right wrist and arm is so bad it is difficult for me to type, and I’m a technical writer.

Marie – I noticed your post in the Personal History section. If you go to our main site (click anywhere on the blue bar above to access) and read some of the testimonials, you will see that it can take a great deal longer than the 3 months you have now given yourself to see any measurable improvements.AP is a slow road (and sometimes a very slow road) to wellness. Plus, you are in the classic time frame for a Jarisch-Herxheimer response (you will have read about that in the books and there is more on this subject at our main site as well as in the FAQ section on http://www.rheumatic.org). The Dr Brown video (which you can access from the main page of this Forum) also gives good info on the time it can take to see improvements.

The fact that your joint pains are in the large joints, that prednisone/cortisone shots did not help, to me indicated the possibility of a palindromic type of arthritis and, perhaps, also of Lyme.

If it were me, I’d consider tapering off a little on the mino if it is interfering with your ability to do your job (“kill pathogens not the patient”!) or even having a washoutout period of a week or so and starting at a lower dose to begin with. If you are hyper-sensitive, even the 100mg MWF may be too much to begin with. Again, if it were me, I’d then give it 6 months to see my response (and daily journalling can be good in this regard because improvements can be very small and hard to notice without documenting them). I’d also be detaoxing as much as possible (Epsom salt baths, masses of water, lemon/olive oil drink). If no improvements after 6 months, I’d then be looking at some other possible influencing factors – including testing for Lyme Disease.

Anyway, just food for thought. This approach to treatment does take patience and often tweaking of protocols as it is often highly individualised. Lynnie

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)

[mariemcminn]

Hi Lynnie,

I definitely know now that I am in this for the long haul. And thanks for your advice about the Epsom soaks, and olive oil and lemon, and keeping a clean diet. With all of the food sensitivities that I have, I am careful about everything that goes in my mouth, because I do flare even if I have a bit of sugar. My last labs (last week) were normal, although I didn’t have a new test for RF or IgG antibodies. I think these numbers will also come down. I did respond well to prednisone in the past; however, with the last pack, which did reduce the swelling in my knee, within a few days, the swelling returned. It’s always my right knee–never my left. So if that’s typical of Lyme, I should keep that in mind.

I know that I have been Herxing, as I experience chills often and feel flu-like. Even in Florida, I like the temperature at about 80. I hit the hot tub every day and get a lot of exercise (pool and recumbent bike). I just went off the Methotrexate because I learned from the forum that the higher dose of Minocen is often given to those on DMARDs. I chose to stay on the Plaquanil and the 100 mg MWF dose of Minocen.

I’ve heard from several that I should consider being tested for Lyme disease. I will keep that in the back of my head. Also, I’ll do more research on Palindromic RA, although I did just read a post from Lyn from Sydney, Australia dated October 2007, and certain things don’t line up. But, that said, I’ll keep researching that.

As far as keeping a diary, I do journal every day–what I eat, my pH, exercise, sleep, and notes about how I feel. I even color-code the chart so I can see at a glance which days my knee is “green,” (no swelling), “yellow” (swelling but not painful to walk), or red (very painful). The knee swelling is cyclic – 2 red days, 5 yellow days, 8 green days.

Thanks for all of your support, advice, and encouragement. I don’t know what I would do if it were not for this forum–I finally feel hope!

Marie

[lynnie_sydney]

I did just read a post from Lyn from Sydney, Australia dated October 2007, and certain things don’t line up. But, that said, I’ll keep researching that.

That was probably ME! If you tell me what was in it that didnt add up for you, I will comment. Also, I’ve come a long way in my education and understanding since 2007 😉 Lynnie

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)

[mariemcminn]

@lynnie_sydney wrote:

I did just read a post from Lyn from Sydney, Australia dated October 2007, and certain things don’t line up. But, that said, I’ll keep researching that.

That was probably ME! If you tell me what was in it that didnt add up for you, I will comment. Also, I’ve come a long way in my education and understanding since 2007 😉 Lynnie

It was a strange coincidence. After I heard from you originally, I actually googled “palindromic” and the search results turned up the 2007 post. What a heart-wrenching story–my heart goes out to you.

I have a couple of questions. First, if I want to get tested for Lyme, where do I do that? I have a friend who said there are really only two labs in the US. Both of her daughters have Lyme disease and have been very ill for two years but are now finally getting better. Secondly, if I do have Palindromic RA or rheumatism, won’t the Minocycline treat it effectively?

Thanks for your wisdom and experience; it sounds like I should get tested for Lyme regardless.

Marie

[lynnie_sydney]

Marie – maybe it was my testimonial written in 2007 and which is on our main site. I think you’ll find folks around here (in the U.S.) believe Igenex is the only reliable lab for testing. Lynnie

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)

[mariemcminn]

@lynnie_sydney wrote:

Marie – maybe it was my testimonial written in 2007 and which is on our main site. I think you’ll find folks around here (in the U.S.) believe Igenex is the only reliable lab for testing. Lynnie

Yes, the google search pulled up your posting on this site. Thanks for the info on Igenex. I will check it out.
Marie

[nord]

Mariemcminn, as it is mentioned that your large joints are hit, you may want to consider ReA as well (see Carter, Hudson: Reactive Arthritis: Clinical Aspects and Medical Management; Rheum dis clin N Am 35(2009)21

[gordbentley]

I concur with nord. i have reactive arthritis, or so im told. it hasnt even touch my hands wrists or toes. just knees (the worst but now 98% healed) ankles, shoulders, and the odd twinge in my hip.

[Author]

Posts