High CCP

[froggy]

Has anyone done well with Ap when they have had a high ccp?

[richie]

Hi

Do you have any other symptoms at all ?? What about the RF test ??? The reason I am asking this is what would the AP be treating ????– High CCP by itself is not always a true marker for RA without any other symptoms –but with other RA symptoms the AP can most definitely help –its a treatment not a preventative

Richie

[froggy]

Richie,

 

My ccp is over 100 and my rf was 571 in Jan. and 320 last month.  I have pain in my right heel, the bottom not the back and my lower left back not sure if it's my hip or what.  Knees hurt a little but not sure it it is RA or just the gynastics, running, and all the other tourment I put them through.  What do you think?

 

Thanks

Froggy:shock:

 

 

[froggy]

Oh, and my knuckles on my left hand hurt and were red in Jan.  I have had this going on for at lease 3 years now and haven't taken anything except predisone pack 3 times.

[richie]

Hi

While I am not  doctor –the RF being high along some inflammation  shows perhaps very early RA –in that case early treatment with antibiotic could prove beneficial

Richie

 

 

 

 

[Maz]

Hi Froggy,

Think I posted on this before in response to a similar post from you, but sometimes my memory fails me! 😯 Forgive me, if I'm doubling up, Froggy, and this is all old news.

Yes, I also have a high anti-CCP and had a high RF. You can read my story here on the Progress Threads with details of my bloodwork:

http://www.rbfbb.org/view_topic.php?id=301&forum_id=3

Of course, standard rheumatological procedure is to treat early cases with few symptoms with anti-inflammatories and then, if symptoms evolve further, to head into the stronger stuff. As Richie said, alone, the anti-CCP isn't diagnotically remarkable without supporting bloodwork to show otherwise or undeniable symptoms….for instance, a rheumy would look at your RF, CBC, Sed Rate, cardio-CRP…to get an overall picture of your level of inflammation and symptomology in order to make a diagnosis.

Have you managed to read, “The New Arthritis Breakthrough,” by Henry Scammell? Dr Brown documents the case of a young girl who came to him, exhibiting all the clinical early signs of rheumatoid disease…I think it was JRA or RA. He treated her with AP and all her signs and symptoms regressed and she never went on to fully manifest full blown RA. He had seen this many times and remarked that early treatment with AP could stave off rheumatoid disease, if the doctor was alert enough to investigate the early signs.

Of course, it must be a personal decision, but knowing what I know now…if my PCP had done his homework and recognized that I had Lyme, in spite of equivocal tests, I could have averted all-out RA or at least the explosive variety of it based on just my clinical presentation of symptoms and two very obvious rashes.  

Have you managed to see an AP doctor yet to get a second opinion? This might be worth your while…or even a phone consult with Dr S in Iowa might help in your decision-making process. He may say “hold off on AP” or he might say, “best to get started early.” He's one of the best AP docs out there and trained under Dr Brown…I don't think he'd lead you astray. 😉 You can get his info from apdoctors@roadback.org and just ask for his phone consult days/hours.

Peace, Maz

[froggy]

maz,

 

My cbc, sed rate, and crp are all fine.  I consulted with an AP doc and they are waiting because I do not have any other markers in my bloodwork.  The high ccp scares me a lot.  i did speak wiht Doc S and he said to start mino, but it was a quick phone call and he jsut went on the ccp and rf.  I haven't started.  I am thinking about going to see Doc s in tn in the end of June.  The pains are beginning to get worse and I have lost a lot of weight in the last year. 

 

Froggy

[Maz]

Hi Froggy,

I think you're very wise to take this further, given your concerns about worsening symptoms. Certainy, the earlier people have begun AP, the swifter the turnaround seems to be. Although we are each different in how our diseases present….some slow in the outset, creeping up, others like me have experienced explosive, quite unexpected and completely life-altering beginnings. Antibiotic therapy is a relatively benign treatment option, so going to see the AP doc in TN is a very good idea to start you nice and early on your road back. 😀 

Let us know how you get on at your appt!

Peace, Maz  

[Patti D]

Hi Froggy,

I am new to AP, have been on it for 6 months now and feel quite a bit better but not yet normal. My anti ccp was 221 and RF 191 along with elevated sed rate, 33 and low RBC etc. My blood work , RBC and sed rate was normal within one month of treatment. I have not had the other RF or AntiCCP checked again as I do not have a real AP doctor just one who prescribed me minocycline for the RA, because I asked for it instead of his suggestion, methotrexate. 

Froggy, I say go for it. The alternative is some pretty heavy hitters that do a lot of potential damage to multiple organs. I have had vertually no side affects unless you call a herx a side affect:doh:. I hope all is well with you and you listen to the many voices of reason on this board. It is what got me going on the right road:cool:

Happy days!

 

Patti D

[froggy]

Patty,

 

I tried to pm you, but it said the address wasn't valid.  Weird. Thanks for responding.  Stories like yours give me hope.  Do you take any supplements?  If so what?  Also, have you had issues with yeast?  Are you on any special diet?

 

Thanks

for the help.

 

Froggy

[Patti D]

Good morning Froggy,

I am so glad to hear from you. My RA came on in one night. I have had no previous treatments, other than the abx. Like Maz, I was treated for Lyme first and if you count that treatment, I  responded overnight with doxycycline for the lyme as well.The problem with the lyme treatment is they only gave me one month of antibiotics, so 4 months later I developed overnight RA, most likely brought on by the lyme disease. That is why I knew I would respond to minocycline  for the RA as mincycline and doxycycline are in the same family. As I said I am getting better little by little. These last two weeks have been wonderful. Yesterday walked 3 miles, this morning 2 miles and I plan on kyaking this weekend. I could barely get down the stairs 6 months ago. My shoulders were the most painful so I am going to try the kyaking and hopefully I will be able to do that again:)

I have had no problems with yeast. I take a multiple vitamin, fish oil and drink the lemon/olive oil drink nightly. I take probiotics in spurts as I find all of these pills overwelming. I am down to 1 aleve in the morning and 1 at bedtime. This is amazing and really I don't always need the one in the morning but take it because I also have a physical job teaching CPR so I am up and down quite a bit. I also garden so I don't want to go to bed stiff as It stresses me out hence worry causes problems/more joint pain.

I have read alot about dairy and joint pain and like most on this board, I am willing to try things to see if they help. I have just started to take away most dairy. I live in Wisconsin, cheese is our middle name, so this is no easy undertaking.

Other than these tiny life changes, I feel very lucky to have found this website and to have found this treatment. It is all a personal choice and one that requires a lot of reading and blind faith as well. There are no gurantees with any treatment so you need to be positive and truly believe you will get well. That is the hardest part about this, not knowing the outcome. I am confident you will make the right choice for yourself and believe me things will get better. I think I am still quite emotional about this but really want you to know that confidence in this treatment comes with physical improvement. Once you start to feel better you will want to tell everyone as you realize this is such a good road to follow.I have always been an independant thinker and not followed the masses which is why I was drawn to this board. Please continue to let us know how things are going. We are a very supportive group.

 

Oh, and one more thing about bloodwork. Don't get to worked up about it. I was so upset when I got my bloodwork/diagnosis. I am quite amazed that doctors use bloodwork as the majority of there diagnosis. A really good doctor will listen to you, physically examine you and use the blood work as an additional resource. Doctors that eliminate the first 2 parts of your exam  are really not doing you any favors. I was misdiagosed with the lyme disease and to be truthful am not sure if I still have a diagnosis. I know I felt better right away on the minocycline so am glad I didn't wait for treatment to start. Keep us posted. People on this board really do care.

Happy days!

Patti D

 

[Patti D]

Oh Froggy,

One more thing, how did you come up with froggy?:D I have a koi pond with lots of frogs;) so do love the name.

Patti D

[froggy]

Patti,

 

I collect frogs.  We have real and ornamental ones at the house.  that and every now and again I feel a little froggy!:P

 

Thank you for all the information.  I went to the rhummie and he didn't want to do anything at that point because I did not have a lot os symptoms.  Well, now, my heels hurt and my right hand is a little stiff and swollen some mornings.  I have an appointment with Doc S in Tn  at the end of June so I think I will try to keep it.  My rhummie says there haven't been enough studies done on Mino to use it.  It was approved as a dmard, but still won't do it.

I have been bitten quite a few times by ticks, but don't know if I have lyme.  I grew up in Ct.  i hope to do as well as you.:D

 

Thanks again!!!!!!!!

[Author]

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