Anti-CCP and RF down again!

[Maz]

Thank you so much everyone!  I can't believe the outpouring of congrats from you all…you're terrific!!!

Ruth, LVento, Rosemary, Tom…you're all going to make it to remission, I just know it, the very smart, strong people that you are, all advocating for your own health! Casey and Bonnie, I know you're virtually in remission already and you both deserve as many congrats for all your efforts to fight the good fight!!! 

Susan – since March '08, I've been on low dose Mino (100mg bid MWF) and Zith (250mg once every 10 days). The 15 months prior, I was on heavy Lyme protocols to hit all the coinfections. So…yup, this is all I'm on currently. My plan is to get the RA into remission for a reasonable length of time and then possibly ramp up the Lyme protocols again to see if I can elicit any more herxing, as a sweep up job. It will be tough stirring things up again, but I think it will be worth it. Of course, once tasting remission, it may take some time and consideration before I work up the courage to attempt stirring the pot again!

Peace, Maz

[Susan LymeRA]

Wow Maz.  That is just awesome.

I developed a cold and at the doctor's direction, stopped the Enbrel and ramped up the colliodal silver.  After about 10 days, my wrists were hurting badly.  Both wrists, whereas normally only my left wrist gives me trouble.  It is the one where RA ate away all the cartilage.  Unfortunately, while on AP.

I was discouraged and started back on the Enbrel, but the wrist pain continued.  Finally, I was too busy on Saturday enjoying life to take my full dose of silver.  By evening, the wrist pain was down and by Sunday morning, gone.  I had a lightbulb moment and said,  Ok, lets skip the silver for awhile and see what happens. 

Well, it is Wednesday now and still no wrist pain.  I have a feeling, that stuff is kicking butt on something. 

My numbers are down with yours and have been for a long while, but it just took more for me to get there.  Like you,  I hate stirring up the hornet's nest after feeling completely normal, but  I will go back on the silver but at the low dose. 

 

 

[Anna]

Maz,
WOW, I'm so happy for you, your dropping numbers give to so many so much hope, you are my inspiration. You have reached to so many!!!
Thank you for ALL your time!!!!!

[Maz]

[user=786]Anna[/user] wrote:

your dropping numbers give to so many so much hope

 

Anna, so happy that documenting my bloodwork progress has provided you with hope. It was others who did this when I was starting out on AP that also gave me hope that it would work for me, too, so I think it's important that we all share…even if we happen to backslide for a bit. Sometimes this happens, too, while on AP and it's not unusual to have to make adjustments along the way so we can better manage the protocol…like possibly changing up the antibiotic being used, the doses and/or combos. JB is a good example of how a simple change in IV or oral antibiotic can really make a difference to a setback in progress.

I think I've been really fortunate, because I started out with a really great doc who absolutely believes in infectious causes for our sorts of diseases and knows it's a veritable pea soup of infections with which many of us are dealing. He's not afraid to use whatever combo is necessary and will change things up if he thinks necessary to get a result. So I really do attribute much of my progress to finding a great doc right away. This can really make a huge difference, especially for people with severe, complicated or longstanding disease.

It's still quite early days for you, but if you hand around here, I guarantee you'll be an expert APer in no time! 😀 Thanks for your lovely, warm message of support!

Peace, Maz

[Anna]

Maz, you are great!
Could you see through the cyber space?  🙂
I do have backslide,:( and that is the reason I got quiet, I want to report the good news.. and I that is not the case. Which is really scares me, because I use the logic of comparison. Your onset was very strong and severe in comparison with mine; however, after 6 month you saw great improvement. I?m into 5 month of brand name abx, and have a major]backslide.
Also when I read over and over DR. B book, he is very strongly suggests that with negative RF and initial disease (negative CCP) one should respond faster. So, of cause I question if abx is working for me. MSM helped a lot and I?m still plying with it, trying to adjust back and forth.
I am trying to stay positive, especially helps seeing others on this site getting better. Thank you again.

[Maz]

[user=786]Anna[/user] wrote:

I do have backslide,:( and that is the reason I got quiet, I want to report the good news.. and I that is not the case. Which is really scares me, because I use the logic of comparison. Your onset was very strong and severe in comparison with mine; however, after 6 month you saw great improvement. I?m into 5 month of brand name abx, and have a major]backslide.

Hi Anna,

Here is a link that may help you work out what may be stalling your progress:

Things to Check if You are not Seeing Improvement on Antibiotic Therapy

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/89.html

I should clarify that I was on heavy dose, combined antibiotics in my first year and, although my bloodmarkers improved significantly during that time (2007), it really didn't feel that way. As I have Lyme, I feel that it was important to go that route, first, to ensure I hit all the nasty coinfections that come with dirty little tick bites, but it was when I lowered to pulse dosing and went on Minocin and Azithromycin that I had the best physical improvements in my second year…and my numbers have continued dropping.

I've been at this a little over two years, so although my anti-CCP came down below that magic 60 number last summer (6 months ago), there was a very challenging 20 month road before that point when I worsened significantly for the first half of the first year and then began experiencing hypersensitivity reactions in the second half of that year.

For you, it might be as simple as changing up your antibiotic or there may be other issues (listed in the link above) that may ring true to you that haven't been addressed yet.

I hope you find some answers…don't lose hope, Anna. Tweaking your protocol somehow (change of antibiotic, addressing candida, detoxing, diet, etc) may be all that is needed to set you right.

Peace, Maz

[lynnie_sydney]

Anna – Maz has given you a good link to have a look at. I'm also wondering the reason why you are on Dynacin (doxycycline) versus mino? (Excuse me if you have posted about this before). It's just that mino is generally recognised as having better tissue penetration. Are you seeing a good AP doctor also? Sounds like you could do with a good professional partner in this. If you are taking pain meds, it may be time to look at a non-salicylate based one that wont compromise your gut. There is usually an answer to lack of improvement or backsliding and it may just take time to work this out. However, I see that you have only been on abx since September and it is often 6 to 12 months before people see improvement. You will also be doing yourself a big favour by journalling daily – sometimes improvements are really, really tiny and we dont notice progression unless we write it down. I hope you find some relief soon. 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)

[Anna]

[user=30]lynnie_sydney[/user] wrote:

 I'm also wondering the reason why you are on Dynacin (doxycycline) versus mino? (Excuse me if you have posted about this before). It's just that mino is generally recognised as having better tissue penetration.

Lynnie,

I take Dynacin because it's a brand name for Minocin. From what I understand :

Minocin is a brand name capsules and

Dynacin is a brand name tablets.

My farmacy had at the time of orderring only Dynacin, i understood it's the same thing just in tablets form not capsules, am I wrong….. I did check on internet and it confirmed it.  Now i'm worry, am i taking the wrong thing all this time?

 

[lynnie_sydney]

My bad Anna – you are quite right – though it's a brand name for minocycline (which is the name of the drug). Minocin is another brand name for the drug minocycline.  

However, I'd be interested in others' views on Dynacin versus Minocin. My understanding is that Minocin is considered the Gold Standard. And, with you having problems, sometimes people find that making the change can make a difference. 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)

[Anna]

from what i understand the dynocin and minocyn are exactly the same thing, however, i will try next time to ask my pharmacy to get me the Minocyn!!!!!!!!!

Who knows, even if it silly, and even if chemically there is no difference, I'll still try next month to get the minocin…. Whatever it takes, right???!!!!!!

 

[Anna]

[user=30]lynnie_sydney[/user] wrote:

You will also be doing yourself a big favour by journalling daily – sometimes improvements are really, really tiny and we dont notice progression unless we write it down. I hope you find some relief soon. Lynnie  

you right, the improvement is there, sometimes it's tiny and sometimes it's much better then tiny. In the last  month I did stop taking IBprofen, which I was taken 400-600mg 3 times a day and I did have few great days with almost no pain. But mostly i was able to stop ibprofen completely only after 10 days of MSM.

I guess my worry is that I see the progression and movement of pain to the other areas, where it was not before, and it's not migrating any longer it's getting fixed spots. Before abx, it would migrate almost every day.  Doesn't meant it getting worse?

[Author]

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