Dr. "S" in Iowa

[richie]

Hi

That email address posted is incorrect –if you go to google type in his name and then Iowa –you will get all his info —

richie

[daughter-sine sclero]

[user=266]JBJBJB[/user] wrote:

Nico,

I wish I could adopt you as my daughter!!! You are truly a great gift in your mom's life. I hope you will help her to find the best treatment, so her SD stop the progression and on her way to recover. 

 
 

 

 

Thank you JB that is really sweet for you to say.  Yes, we are already trying to find the top pulmonary specialist here in the Medical Center.  Yes, I really have encouraged her to join this and get support so who knows…you might see her on here real soon !!  I will keep all of you posted on her condition with her lungs…we are starting our IV's today…I am glad they are really going well doing them at home.  I was really nervous at first but we both really have got the hang of it now.  You wouldn't believe how quickly 3 weeks rolls around.  I am so proud of her as I know it isn't easy going through the IV's so frequently!!

Will be in touch soon…Take care and I all the SCLERO GANG our in my thoughts and prayers.

Sincerely,

Nicole

[JBJBJB]

Hi All,

After on AP for a year and 2 months, I got my test results back. Here is my report card. I don't understand these results. If any one could help me, that will be great. 

C3 156 (65-180) 

C4 32 (13-52)

Anti Cyclic/CCP  Value 0 (how could this be???)

CH50 910 (392-1019) 

IGG 2,340 (700-1,500)  Hi

ANA Titer 1:5120    <1:40  Wow

Rheumatoid Factor  <20

C-Reactive protein (high sensitive) 0.14 (<=2.99) It is first time my Albumin is back to normal. :roll-laugh: WBC 4.3 Low (4.5-11:5) ESR 38 (0-20) SSA (RO) (ENA) Positive (what does this mean???)

ENA Smith AB Negative

ENA RNP AB positive

SSB (LA) (ENA) negative

I have very high level inflammation though, my IgG is 2,340, ESR is 38 and my WBC is 4.3 which is low, that means I am fighting with some infection. I still have a lot of pain and swelling. Prior to AP, I was on plaquinel. My ESR was down 25. My WBC was always at the lower end.

Thanks,

JB

 

[richie]

Hi

That ANA figure is off the charts –very high !!!!

richie

[JBJBJB]

Can AP bring it down?

[maz.aust]

Hi JB,

I agree when you say your inflammation markers are considered high, but I can tell you that my ESR is normal at 15 and when I had pancreatitis my ESR reading was 1400.  I wouldn't worry too much, it is after all only an inflammatory marker, you could have inflammation anywhere at the time you had your bloods taken.

As to your high ANA titer I just thought I would share this with you:

ANAs are found in patients who have various AI diseases, but not only AI diseases. ANAs can be found in patients with infections & people with a family history of RA.  ANAs are actually found in about 5% of the normal population. 

ANA results are just one factor in diagnosing, and must be considered together with the patient's clinical symptoms and other diagnostic tests.

Medical history also plays a role because some prescription drugs can cause “drug-induced ANAs”.

Edited to add this:
My doctor said that according to all the evidence so far it usually takes 5 yrs to get this anywhere near remission:  having said that, in my case at just over a year on AP it isn't very long at all.

 

 

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

[Lizz]

You know, JB test scores are just a point in time as Maz says. I've had bloodwork done when I've felt pretty decent and whoa!, the results a nightmare, and vice versa. I guess my question is, why aren't you back on plaquenil? Don't you need something to redude inflammation and help the antibiotic reach it's target? It's a shame you have pain and swelling. I started  on plaquenil two months ago and am still waiting for it to kick in, but I'm hanging in. Shouldn't you be on some thing to give you some relief? I hope you feel better soon.

[maz.aust]

JB,

Do you think it is at all possible that you are actually experiencing a really bad herx reaction ??

 

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

[richie]

Hi

It does take quite awhile for remission –five years is  fairly accurate for this to occur —I definitely think that AP should lower that ANA as time goes on —

richie

[Maz]

[user=266]JBJBJB[/user] wrote:

SSA (RO) (ENA) Positive (what does this mean???)

Hi JB,

Some very interesting labwork! Lots of improvement, by the sounds of it and some others taking their sweet time to follow. Do you have copies of original bloodwork on these same tests to make a comparison by any chance?

As far as I know, the SS(RO) (ENA) is a more specific ANA test to detect Sjogren's Syndrome. Check out Lad Tests Online for more in-depth info:

http://labtestsonline.org/understanding/analytes/ana/test.html

“Other conditions in which a positive ANA test result may be seen include:

• Sj

[JBJBJB]

Maz,

I have to dig them out. Yes, I saved all the test results.

My local rheumy still insists I have Lupus.  He told me the early tests shown I have Sj

[JBJBJB]

Liz,

I may consider to go back to plaquinel. I was doing very well with it. After several months on AP, I took the plaquinel out of my “diet” and I started feeling downhill. I have not been feeling well. After this Jan, my major flare up, I have not recovered.

I think AP alone will not work well for my condition. I have to add other medicine to fight for the inflammation.

JB

[JBJBJB]

Richie,

Thanks for the positive outlook.

Maz Australia,

Yes, I am very worried and discouraged. I sure hope it's just a fluke. I hope my next test it will come down.

First dilution 1:40

Second          1:80

Third               1:160

Fourth dilution   1:320

Fifth dilution        1:640

Sixth dilution       1: 1280

Seventh dilution   1: 2560

Eighth dilution       1:5120

Ninth dilution       1: 10,240

 

[A Friend]

[user=266]JBJBJB[/user] wrote:

My local rheumy still insists I have Lupus.  He told me the early tests shown I have Sj

[JBJBJB]

A Friend,

I saved your article and I will definitely give it a shot. No matter what kind of health challenge we have, this rememdy will work for every one including healthy people.

I keep my eyes open on your articles. You are my whole health well being counselor :roll-laugh:!!! LOL

:JB

[Author]

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