Nervous to start protocol

[lynnie_sydney]

Yes – interesting and a guide, but maybe not conclusive. My ANA antibodies showed low positive results after I began AP (not sure whether these tests were done prior actually). Never higher than 1:160 (speckled) and up and down until recently showing zero. Also changed from speckled in one result, to homogenous in another, to mixed in another! Think the lowish results ruled out Lupus but perhaps suggested something else going on than straight RA/PRA. My AP Doc, when I first consulted her last year, was somewhat doubtful about the PRA diagnosis. She initially suspected MCTD but – after input from the naturopath and some tests by her – settled for a form of chronic lyme  – which isnt supposed to exist in Australia! :?…………. To quote that oft-used line in the Shakepeare in Love movie………..'It's a Mystery'.  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)

[Kim]

[user=27]Maz[/user] wrote:

PS. Not an expert here, but according to the link above, an ANA test that comes back “Speckled, Irregular” is indicative mixed CTD (SLE & SSc). Kim should be able to confirm this as she has MCTD. 😉

I really don't have personal history because all of my SD and MCTD labs were negative, it was the Lyme tests that lit up indicating the lyme-came-first theory.

kim

[justsaynoemore]

Maz – I wasn't sure, so I cannot find it right now.  I will google around and see if I can find it.  What I posted has to be the lupus test that was negative, so I could take lupus off my original MCTD diagnosis. 

THANK YOU !! Take care ~~ Cathy

[justsaynoemore]

Well, I am not happy at all.  I had asked my primary to run the MCTD, but she ran the lupus one AGAIN.  I found the double-sided lupus test in my blood work about six months earlier, which is correct as that was when I had asked for it. 

I found it however in my diary 😛

41 – RNP antibodies – ribonucleo proteins

There could be a little bit of shorthand used, so I am also going to doublecheck it, then will have to ask her why she didn't run it, but ran the lupus again.  It is interesting that the lupus test came out much lower in the normal range again the second time, hmmmm. 

I might have to put MCTD back into my diagnosis, as my new rheumatologist was fuzzy about my diagnosis at the first visit, saying you definitely have some sort of autoimmune combination going on, and my recent second visit he was running so far behind, he didn't have time for me.  But, I definitely have RA and the polymyositis. 

Every day is a new day in RA/AIville 😕  Take care ~~ Cathy

[Maz]

[user=394]justsaynoemore[/user] wrote:

I might have to put MCTD back into my diagnosis, as my new rheumatologist was fuzzy about my diagnosis at the first visit, saying you definitely have some sort of autoimmune combination going on, and my recent second visit he was running so far behind, he didn't have time for me.  But, I definitely have RA and the polymyositis. 

Every day is a new day in RA/AIville 😕 

Hi Cathy,

I giggled at your sig line…”every day is a new day in RA/AIville”!!! :roll-laugh: 

All this testing is such a confusing mess at times, isn't it? 😕 I'm familiar with the RA tests, but still learning about the others. Probably the best person to ask is your rheumy. PCP's tend to run basic tests that tell them when to refer to a specialist, but may not be wholly conversant with the more specific tests a rheumy would run.

It's so easy to get caught up in the numbers game and more confounding still when there are overlaps with other dx's. The main thing is to watch the numbers over the longterm trend, because what I've found is that numbers jump around all the time. As long as thing are heading in the right direction, the odd blips here and there aren't too important.

I like that my doc checks my bloods every month, because if things started going in the wrong direction in a period of a few months, I know it's time to go back and see him to tweak my protocol. The other thing I try and remember is that we have these labels for all these various manifestations of infections, but essentially it's the same thing…if you believe in infectious causes, that is. For instance, I have Lyme disease, which is known as “the second great imitator” (the first being syphilis, a disease that can pretty much mimic anything). Lyme can mimic anything and it just depends on where the infection has decided to take up residence in the body (in addition to genetic proclivities) as to how the infection will manifest. In my case, it really liked my joints. In others with Lyme, it likes the skin, the eyes, the organs, etc. Then, of course, you have all the coinfections of Lyme that have their own preferences on where they set up residence, so for some with Lyme the picture gets even more complicated….what do I have? Is it scleroderma? RA? Lupus? As my Lyme doc said to me when I asked him what I had in the beginning, “You have both – RA and Lyme – but when we get the infections under control, the RA will remit.” His specialty is Lyme and “autoimmune” conditions, so he sees people every day with MS, Lupus, RA, etc., but to him, it's all the same thing…it's Lyme and its hitchhiking friends.

Having thought about this for some time, I reckon he's right. Doesn't matter if we have Lyme or some other set of infections….but get them under control and the disease(s) we have been diagnosed with remits. 😀 I find that to be comforting…hope it helps you, too.

Peace, Maz

[Meredith]

I've always been confused about the labs.  Docs have sat down to go over them with me before, but I've never quite grasped it . . or at lesat feel silly making them repeat over and over so I can make notes.  In the end, I've been told that the labs don't matter as much as just treating the disease. However, I'd still like to understand a bit better.

I went back and looked at my most recent labs.  I'm speckled ANA and there's a number of 640 above it. The RNP antibody is 222.  SS-A antibody is 142. In these particular labs, the dsDNA Ab, IgG was normal, though I know in the past it hasn't been.  No one has ever mentioned schleroderma to me, so I'm hoping it just STAYS AWAY. 

Can anyone recommend a particular resource for trying to understand better these labs?  Or is it just a matter of Googling, etc.? Also, I know there is a lab they do that tells whether you would have more risk in pregnancy. I think something to do with the development of the baby's heart. I thought it was one of the DNA ones? Has anyone heard of that?

Thanks.

[Maz]

[user=1155]Meredith[/user] wrote:

Can anyone recommend a particular resource for trying to understand better these labs? 

Hi Meredith,

This link might help and hope it doesn't confuse further!  😉

http://www.labtestsonline.org/understanding/index.html

Peace, Maz

 

[Meredith]

Great. Thanks.

[justsaynoemore]

Maz – I very much agree with your theory of how AI diseases hits each one of us differently.  Even though I have RA, I don't get the hot, swollen, red, painful joints.  The polymyositis gives me overall pain in the muscles – it feels like I have a bad flu all the time.

All of my problems so far have been internal.  Hashimoto's thryoditis (itis – inflammation).  Severe acute pancreatic attacks because of a badly infected gall bladder – actue cholyeositis (sp but the itis on the end) – and I suffered with these attacks for years because no stones would show up on the ultrasound of the gall bladder.  Thankfully, I sought out a surgeon and he yanked it immediately because of my symptoms.  DDD – spinal arthritis (itis again) – my low back is disintegrating, as I just got my new MRI results yesterday, along with an epidural.  Everything is so INFLAMMED, the epi couldn't flow down the correct leg, but it is better today.

Mine is all internal so far.  No erosions, but definitely ulnar drift, really moving in my right hand (badly injured neck in an accident that got the nerve for the arm and hand, so the RA is going after my weakest links), and the left hand is slowly moving along.

No wonder the doctors have trouble diagnosing and treating us.  By the time the blood has been pulled, we are already on to something else.  By the time we see the rheumy, its all long gone. 

I am so thankful AP is working for me, and works so well.  Take care ~~ Cathy

[Parisa]

justsaynomore,

Have you asked your doctors to see if you can get IVIG?  It has really helped turn the myositis and other issues immensely.

[Anonymous]

Hi Kat,
Sorry to hear of your allergic reaction to Minocin.  Could you share with us how soon this occurred? Do you have to wait for your next appointment before you can be treated with something else? What else if anything did the doctor prescribe for you? I am in the process of looking for a good doctor and your answers would be helpful.

Thanks, Claudia

[justsaynoemore]

Parisa – I had never heard of IVIG until you posted it.  I am so mild with my symptoms (until a gland, an organ flares) that I haven't gotten past MTX, predisone and Plaq being used.  I read up on it, and I don't fit into any of the criteria mentioned, but that was just one site.  Thank you however, I am going to put this into my back pocket in case I need it for the big guns later on.  Take care ~~ Cathy  PS  I am bummed, my epidural wore off already – maybe got 36 hours out of it. 

[justsaynoemore]

The blood test for MCTD is U1-RNP, not 41-RNP :doh:  I really need to work on my penmanship.  Hold it, I cannot grip a pen or pencil properly, I have RA LOL  Take care ~~ Cathy

[cla0713]

Does anyone out there have a ballpark number on the actual cost of Cleocin IV 500mg.  I'm going to call my insurance co. and see if they will pay, buy I'm not counting on it.  I guess there isn't any need to start the protocal if I can't afford to kick off the therapy with the IV treatments.  I'm currently on methotrexate and pred. and am hoping for feed back from anyone who has made the transition.

Any info would be greatly appreciated.

Connie in Albuquerque

[Maz]

[user=1373]cla0713[/user] wrote:

Does anyone out there have a ballpark number on the actual cost of Cleocin IV 500mg.  I'm going to call my insurance co. and see if they will pay, buy I'm not counting on it.  I guess there isn't any need to start the protocal if I can't afford to kick off the therapy with the IV treatments.  I'm currently on methotrexate and pred. and am hoping for feed back from anyone who has made the transition.

Any info would be greatly appreciated.

Connie in Albuquerque

Hi Connie,

Noticed you'd just joined the support forum and just extending a warm welcome to you!

I would think the costs for IVs vary according to physician and whether you are having in-office infusions or in-home infusions. Do you have an AP physician yet to help you with the IVs?

There is no need to wait to have IVs before starting oral AP, as IVs can be added later.

What is your rheumatic disease, if you don't mind me asking? 😉 How long have you had it? Generally, the earlier the disease the caught by AP, the swifter the turnaround, but much can depend on degree of severity, too.

Have you been able to read the info under the Education tab on the main site? The physician's packets (Current and Historical Protocols) have a wealth of info:

http://roadback.org/index.cfm/fuseaction/education.sub/subgroup_id=30.html

Further recommended reading can be found here:

https://www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/14.html

Nice to meet you! I believe Randy lives in Albuquerque and may be able to share what he pays for his IV therapy, although I think he is a patient of Dr F's in Riverside, CA.

Peace, Maz

 

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