Turning the corner!

[Chris]

I know everybody is different and responds differently to AP. But I was wondering if I could get responses as to how long everyone herxed , how long before you felt you started to feel better, and how long before you were either in remission or felt 90% better. This process is so long and everyday is a battle just looking for a little light at the end of the tunnel.

Chris

[judy cash]

Chris,

I just started AP in June, this year, so I am new also. I had a very rough spell in the beginning, it lasted maybe 6 weeks or so, not really sure, but it was very very bad. I had some of the worst symptoms ever. Right now  in my progress, I would say that I am around 85 to 90% better. Now with that said, I will say that I began AP 3 months after I was diagnosed with RA. I had symptoms for 2 years, but was not diagnosed. I believe that starting Ap treatment early is responsible for my good progress. I know that I will still have ups and downs, but for now I am very happy with my progress. My AP doctor is also very pleased with my progress.  But you must realize that  not all  people will respond this quickly.

Chris, please, you must relax and have a little more patience. Don't forget that AP works, but it is not an overnight fix.Please, Please, Please don't give up. We are all here to help each other, and I hope this helps you.  Best wishes to you.

Judy

[Chris]

Judy, Thanks for the reply and I am so glad you are doing better! Trust me , I will never quit just like to hear good stories. I am starting my 8th week and I do feel better than those first 5-6 weeks where I herxed liked crazy! We all know it takes time but it is hard to be patient and everyday seems like a week. Did you get the herxing in evey joint? As I only had a few joints affected before AP but since it seems like all my joints are sore! Did this happen to you and did they slowly all get better?

Chris

[judy cash]

Chris,

NO,  not all my joints were affected. I had more trouble with my knees and feet, during my worst times. Befor AP I hardly ever had trouble with my knees, but after AP ,that is where it hit the worst. I got so bad taht I had to have help getting out of bed and also had to use a walker, I was so scared, I just looked at my kids and thought “What have I done, I have made myself worse.”.  But I also knew that this was a good sign, that AP was working, so I just toughed it out. I really thought I  had made a big mistake.    The people on this board and another board, helped me through these tough times. I am so thankful for this and other sites and AP. I am so much better than this time last year. Anyone who knew me, could tell you how bad I was. I always walked with a limp, because my feet and toes hurtr so bad. Also I couldn't use my hands, because the pain after Peeling potatoes, ets. was so  bad that I  would just have to sit and hold ice on them. When I drove my hands hurt so bad and were so stiff. Mowing the grass just about  killed me also. Today I'm doing all these things with ease. The fatigue and depression was a killer also. And oh yea did  I mention that the brain fog was terrible………. All these are 90 % better…………

This is part of my inspiring story…… Hope it helps you along your recovery and ROAD BACK………GOD BLESS DR. BROWN

Judy

[DiamondTNT]

Everyone seems to be different.

I was diagnosed June 28, 2008 with “severe, sudden onset, RA”.

I started AP late October, 2008, minocycline.  I had my first clindy IVs May '09, my second session Aug '09, now taking doxycycline for a while. 

I still hurt and still don't know if it's 'flairs' or 'herxes'.  Mainly my hand and feet all the time, just a matter of degrees as to how bad.  Sometimes various other body parts, and sometimes, my whole body hurts.  NOT as bad as last year though!!!

My RF started at 362 and dropped to 100 within 5 months on mino.  I don't know what it is now and don't really care as long as I am feeling better – or not getting worse.  Reading Kim's thread, “I'm Free”, is a real inspiration to keep on going with AP no matter what else happens, and to have patience and hope always.

If you really think it's herxing, talk with your Dr about backing off on the dose and see what happens.

Hang in there.  At least all that use AP can have something to look forward to.  I didn't see anything positive in my future with the drugs my former Rheumy had me on.  Patience is so hard to hang on to sometimes, but well worth it.  Just keep telling yourself that you CAN get through it and there really is a rainbow at the end of this storm.

[maz.aust]

Hi Chris,

I am 15 mths on AP now and yes in the beginning I herxed in places I had never had even an ache before but slowly over time I started to recognise the differences (for me that is) between a flare & a herx.  What I found really strange was that, in the beginning, I herxed within hours of taking my abx then just after it had settled down my Dr changed the abx doses & I started herxing yet again, but it was different this time – it wasn't as intense as it had been the first time.

I was always waiting to have one of those excruciating flares, but it didn't happen.

As everyone will tell you it can be one step forward two back at times, but I treat those as just a hiccup in the great scheme of things & yes have had a couple of those recently but they were post op & I don't even count them.

It has been a long time since I experienced anything like the flares I used to get, so yes AP is working for me and yes I am very glad I found the treatment & this forum.

Good luck,
Maz – Aust

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Jennhere]

I felt better right away and thought I was the exception to the rule and amazingly cured instantly.  Then reality set in… The pain ebbed and flowed for several months.  It wasn't completely gone, but it would resurge occassionally and freak me out.  I herxed once that I'm certain of during the first year.  It was kind of more intense than I was expecting.  Quite a blow to my enthusiasm for AP.  I survived the herx, which lasted about 5 days and continued on with my high tide, low tide recovery pattern.  Eventually, after a full year of taking mino, I was down to a few toes that ached and a finger that was determined to kill me.  Shortly after the year mark, those pains evaporated.  It was, as John McDonald (I believe he said this to me) described to me: “a glacial pace” of recovery.  I believe AP works.  Those who are long distance runners, can handle the pace of AP recovery..  I am not a long distance runner… I crawled, whined, cried, sat down and engaged in dramatic pity parties and survived with the help of these guys here …  The light at the end of the tunnel?  I don't know.  I think it was never something I looked for and found in front of me.  I saw the hope of a recovery when I looked back on my first year.  It's such a twist on what we're used to, but that's how it seemed to work.  Looking back, not forward.  Stick with it.

[lynnie_sydney]

Chris – in my case 6 years ago, the physical symtoms of a herx were definitive for me for around 6 weeks (in distinct phases which I have documented in my testimonial). It was clearly different for me than any previous type of flare. However, I had been diagnosed with PRA versus RA and, when I commenced AP, I was not on any DMARDS or NSAIDS – all of which can impact response, as can many other things. 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)

[Nort]

Chris,

I was diagnosed with RA in April of 2008. Before that, I was diagnosed with carpal tunnel because of my swollenwrists. I had carpal tunnell surgery on both wrists, which brought little relief. When I went to a rheumy, I had a lot of inflamation everywhere, wrists, knees, ankles. I was diagnosed with RA, all though my blood work came back seranegative. The rheumy wanted to put me on Methotrexate, which I didn't want to go on because of the no drinking while on it (thank God I drink), so he put me on sulfazine. This was at the end of April 2008. Sometime, in August, I found this website and made an appointment with a Dr. T in Parma, OH, but I could not get in to see her till December. During this time, I still had swelling in my wrists, I had to have my bursa sacs on my elbows drained twice – but I felt a lot better. In January, Dr. T put me on mino and a gluten free diet. The swelling went down, I felt a lot better with in a months or 2. I started mowing my own yard this spring for the 1st time in 2 years. Then my wrists starting swelling again, I assume from the vibration from the lawn mower. In June, I went to a naturopath, who started me on fish oil with plant sterols, Zyflomend and told me to avoid eating nightshade vegetables. within two weeks, the swelling in my wrists was gone but I was still mowing the lawn.  Did the mino hep? I think it did but also have to credit the dietary changes and the other supplements. 

If you eat a lot of hot sauce, as I used to put it on everything, I urge you to do some research on nightshades and RA. I was fond of Siracchi (not sure of the spelling), but I bet I had a couple of onces of that a day. I loved that stuff.

Good luck to you.

[m.]

I could never tell see a pattern or tell the difference between a flare and a herx.

The first improvement I noticed after starting antibiotics is I didn't seem to be getting any worse. Then, a month or so in, I began to string together some hours where my pain was less.

About 4 months in, I had a dramatic worsening. That freaked me out. So, I raised my dose and got back on track.

Then, it was just gradual improvement. Some days I'd feel better than others. Some days I'd wake up very still, and other days not.

It took about 12 months for my most painful joints (elbows) to not burn. Now it fluctuates between aching and my forgetting about them because they feel normal.

I caught my disease early. I imagine if one were beginning the treatment with more advanced disease, it could take much longer to see these improvements.

I find it encouraging to see improvements on paper, too. Anemia gone. Mycoplasma antibodies gone. Thyroid looking good. Etc. For me, I can generate quite a bit of anxiety when I feel uncertain.

For example, recently, I went through a bout of fatigue that reminded me of when I was anemic and very low on iron and ferritin. It was reassuring to me to quickly run another set of labs and see that I'm not anemic and the numbers look good. It puts my mind at ease, and then I figure I've got to look elsewhere for what is not right.

HTH, it really is a marathon, not a sprint.

[Chris]

M.

I am all of a sudden low in Iron and borderling anemic also. I see that was part of your story, how long did it last before your iron counts went back up?

 

Chris

[m.]

Hi Chris,

My numbers showed improvement by the next test. I gave up aspirin completely, and took Gentle Iron supplements. My MD and I are continuing to monitor it, about every 8 weeks.

Because we were doing a CBC plus serum iron plus ferritin at the same time, we saw that both serum iron and ferritin were plunging. That is, my body was not taking iron out of circulation (serum iron) and storing it (ferritin).

My understanding is that without the ferritin score, you don't have a broad enough picture to know what is going on.

Anemia is not always “low iron”. But, you need more info in order to know where to start.

My MD also mentioned that anemia is part of the disease. I don't understand that well. Perhaps someone else can chime in.

Good luck

[Chris]

M

Did the iron supplements cause constipation darker stools or any other problems!

Chris

[m.]

[user=1567]Chris[/user] wrote:

M

Did the iron supplements cause constipation darker stools or any other problems!

Chris

Yes, darker stool, but no other problems.

[Author]

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