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[user=2214]steadfast[/user] wrote:
My Thyroid Peroxidase Antibodies were well within range as was Thyrogobulin antibodies. If those weren't auto-antibodies, then no, not tested. She tried to get the most pertinent tests done because I don't have health insurance. I have no problem with getting a more refined test if need be and will let her know that. Thanks again Maz. Sometimes I just feel like this..:shock:
Yea, I know what you mean, Jeanne…deer in the headlights stuff! :roll-laugh: S'okay, we've probably all been there soon after diagnosis. My whole first year was a bit like that.
Yup, those are the auto-antibody tests for thyroid and very good they are within range as it means you don't have a thyroid AI disease. This narrows it down a bit more with your positive anti-CCP.
Another thing that may interest you is that anti-CCP can be positive for a number of years prior to developing RA, even before RF appears. What is so good is that you've caught all this nice and early and should be able to turn it all around in short order. With a history of ReA and possible RA, too, you will want to pay attention to gut health and diet, for sure, though Dr K is very good about this and offering guidance. You're in good hands. 🙂
Peace, Maz
A good way to start my morning Maz, with your positive words. Thanks and Godbless you for your help.
Good information girls. Although my anti-ccp test was always less than 20 and I was seronegative in all tests except CRP. The only thing is the erosion in my feet which is a hallmark of RA. Without the x-rays, I was also not diagnosed earlier in the disease. It took them almost 19 months to get a diagnosis after the x-rays of course. I believe x-rays and MRI's are a good tool to check if all the other tests are not positive. Steadfast in your case, the anti-ccp test was a definite indication of RA. Ask Dr K for LDN when you see her next time. Our dear sweet medical advisor, Maz will give you real good advice on it. :blush:
hi – my 48 yr old wife who has RA diagnosed 2 years ago also with Hashimoto's Thyroiditis is now about to start minocycline 100mg, b.i.d.
Our doctor has been very open minded about using antibiotic therapy based on Road Back, but has warned that there are possible “liver or kidney” toxicities. Anyone hear of these?
Thanks,
Ron
Sanford, FL
formerly from Bridgeport, CT
[user=2264]Ronsword[/user] wrote:
hi – my 48 yr old wife who has RA diagnosed 2 years ago also with Hashimoto's Thyroiditis is now about to start minocycline 100mg, b.i.d.
Our doctor has been very open minded about using antibiotic therapy based on Road Back, but has warned that there are possible “liver or kidney” toxicities. Anyone hear of these?
Hi Ron,
Nice to meet you (another CTer, even if an ex-pat!). I live just 15 mins from Bridgeport in Shelton.
How great that your doc is so open-minded to your wife using minocycline therapy for her RA! Just a heads up…if she begins on the full Harvard Protocol (100mg BID daily), this may cause some pretty intense herxing for some months, especially if she has a lot of inflammation. Is she on any other medications?
Minocycline is prescribed every day to pimply teens, so that sort of speaks to its benign nature. There are side-effects with every drug, but as compared to the standard fare of DMARDs, these are pretty rare with minocycline. Methotrexate is far more likely to cause gut and organ damage, used longterm. If your doc or your wife is concerned, then it's very easy to monitor labs to watch for any elevations in liver enzymes and changes in kidney function….but actually, minocycline is renal protective. You can google “minocycline renal protective,” and quite a few articles and studies will appear for you to browse. There is also a scleroderma patient's daughter who posts here, Michelle (user name MKbeliever), whose Mom started AP after her kidneys failed and while on dialysis. I'm sure she could chime in to allay your fears about this. I actually have some gall bladder issues on occasion (started before RA), which has caused occasional elevations in my liver enzymes, but I manage this with liver flushes, when needed, and I take milk thistle, a supplement which is liver protective. All that said, liver issues while on minocycline is pretty rare, but easily monitored with regular labs. If your wife is on any other drugs, like methotrexate, however, it will be difficult to discern which drug is causing what. The goal, however, is to wean off all other drugs once minocycline kicks in.
Dr. Brown actually didn't use daily dosing, either, in most RAers. The standard protocol he used was low, pulsed dosing. This is because RAer's tissues tend to be very hypersensitive. Too much die-off = excessive herxing = increasing hypersensitivity. So, the rule of thumb is low and slow with AP. This is described well in the Dr. Brown documentary with the protocols he used at the end of the movie.
There is also a good deal of info under the Education tab on the main site in the Physician's Packets (Historical and Current Protocols) you might like to read through:
https://www.roadback.org/index.cfm/fuseaction/education.sub/subgroup_id/30.html
Hope this info helps a bit, Ron, and please send best regards to your wife!
Peace, Maz
PS Having lived in CT, any chance your wife has Lyme in her history?
thanks much Maz for the quick reply. When we visit CT, we stay in the Marriott Courtyard, Shelton and always get the Duchess breakfasts! Bertuzzi's is great too:)What a small world!
Yes, I read Brown's book and am familiar with the 250mg, 3x a week schedule. thanks for reinforcing that idea – I think Anne will probably want to start out perhaps 100mg daily for a few weeks and then double that to the Harvard protocol? Any ideas on how to do this?
I agree with the milk thistle. Definitely she will. Also some studies suggest vitamin C might help with any pigmentation issues so I suppose 500mg-1 gram daily won't hurt.
Would you say that some OTC's might be helpful for any herx issues that arise (800mg advil, etc.)? She is very leery about taking prednisone and the usual, though dr. Brown did believe those drugs did have their place.
take care,
Ron for Anne
[user=2264]Ronsword[/user] wrote:
thanks much Maz for the quick reply. When we visit CT, we stay in the Marriott Courtyard, Shelton and always get the Duchess breakfasts! Bertuzzi's is great too:)What a small world!
Yes, I read Brown's book and am familiar with the 250mg, 3x a week schedule. thanks for reinforcing that idea – I think Anne will probably want to start out perhaps 100mg daily for a few weeks and then double that to the Harvard protocol? Any ideas on how to do this?
I agree with the milk thistle. Definitely she will. Also some studies suggest vitamin C might help with any pigmentation issues so I suppose 500mg-1 gram daily won't hurt.
Would you say that some OTC's might be helpful for any herx issues that arise (800mg advil, etc.)? She is very leery about taking prednisone and the usual, though dr. Brown did believe those drugs did have their place.
Yup, good ol' Duchess and Bertucci's is just down the road a ways from us…very small world, Ron! 🙂 When you both are next up here in CT, we'll have to meet for lunch and a chinwag.
As for starting out on her mino, Brown would start even lower than 100mg once a day. Would be such a shame for Anne to get into a massive herx situation right out of the gate, because it's much harder to dial the dose down when this initial worsening occurs than to slowly dial it up to tolerance. I learned the hard way as a newbie. :crying: I did what you are planning to do…started out at 100mg first week and upped to 100mg BID the second week. I really got it into my head that this higher dose would afford me more immune-suppression, but…OUCH! This is waaaay too much for the hypersensitive RAer. It really does depend on how much inflam Anne is dealing with. If she's a mild case, then she may do okay, but it's worth noting that the least amount of medication needed to acheive a good result, the better…rule of thumb with AP is “less is more.” This is why dialing up the dose the way Brown did it is the most effective way. His approach was to start on 100mg on a Mon, Wed and Fri (even lower if patients had a lot of inflam). I was a pretty severe case and dialed back down to 100mg twice a day on Mon, Wed and Fri and did very well on this dose and, within the first year my anti-CCP and RF had returned to normal and all of my worst symptoms had remitted.
Yes, if a lot of herxing occured, Brown would use small doses of pred to manage the worst of this (5 to a max of 10mg pred) in the short term. Prednisone is a devil drug, though, and dependence quickly creeps up. The adrenals naturally produce about 5mg natural cortisone a day, so any more than this dose shuts the adrenals down completely. They shrivel up and it can be very hard to wean from pred, so it really has to be viewed as a short-term measure. Longer term use leads to moon face, diabetes, osteoporosis, thin skin and poor wound healing, opportunistic infections, etc.
One wonderful, healthy adjunct is for Anne to invest in an Infrared sauna. The deep penetration of infrared heat (1.5 inches into the skin) helps the body to remove toxins much more swiftly. I wish I had invested in one much earlier! They range in price from around $300 for a portable sauna to the more elaborate wooden structures for upwards of $1200. Also, some insurance companies are now covering the cost of these saunas for RA, so worth checking into this before investing. 😉
My doc actually recommended 1000mg buffered Vit C daily while on minocycline. As you're living in sunny ol' FL now, Anne will want to limit her daily sun exposure, as tetras tend to cause greater risk of sunburning and sun-sensitivity. So, she'll want to use a hefty sun-block (I use SPF 50 and still get tanned!), wear a hat and cover up as much as possible. Some sun exposure is good as this increases Vit D levels which many rheumatics tend to be deficient in (causing rickets and osteoporosis amongst other things). Vit D is also a natural steroid, so offers some pain relief. I feel so good in the sun…darn these CT winters. 🙁
I've only ever used Advil gelcaps when necessary, because I have Lyme disease that triggered my RA (Lyme loves immune-suppression) and try to limit it to 2 a day (400mg), if at all possible, taken with food (never on an empty stomach). Overuse of ibuprophen can lead to stomach ulcers and leaky gut, which can cause a vicious cycle with RA and food sensitivities that can mimic RA.
Fish oil (good EFAs) are an excellent daily supplement and do help with inflam. I've also found a supplement, called Neprinol or Serrakor-NK, to be very good for lowering cardio-CRP and thinning blood. Inflam causes sticky blood, which makes it difficult for abx to do their work. I also use ALA (Alpha Lipoic Acid) and NAC (N-acetylcysteine).
Another nice adjunct to AP is LDN (Low dose naltrexone), which you can read about here:
http://www.lowdosenaltrexone.org/
Ummm…that's about all I can think of for now, Ron. Hopefully something here will help as Anne begins her AP.
Peace, Maz
PS One supp that is absolutely a must is Probiotics. Everyone has their favorite brand, but very important to replace the good fauna in the gut (2 hours after mino dose) with a good dose probiotics. Probiotics can help avert candida overgrowth, but once candida grabs hold it can be quite hard to get rid of. Candida in the gut can mimic RA symptoms, so staying on top of probiotics, as a daily supp is very important. 😉
What excellent and comprehensive information… All so very sensible. As I tell Anne, the folks on these boards like yourself are more knowledgeable than most of the docs, that's a fact. After all, RBers are like pioneers having to trek this journey on our own right?:-)
As for our doc (D.O.), he is kind and compassionate but really not that knowledgeable about mycoplasma, inflammatory disease etc. We're more or less telling him what we need but at least he's willing to work with us.
Yes Maz, I've heard of naltrexone from some nurses. They highly recommend it and we will look into it.
If I can trouble you with one more question? We're getting conflicting info on when to take the mino; some say with food, others on an empty stomach, so we're really not sure on this? With milk, not with calcium supplements:?. We just want to do it right!
Thanks and we'll let all now how it goes,
Ron
[user=2264]Ronsword[/user] wrote:
If I can trouble you with one more question? We're getting conflicting info on when to take the mino; some say with food, others on an empty stomach, so we're really not sure on this? With milk, not with calcium supplements:?. We just want to do it right!
Ron
Hi Ron – for AP treatment for rheumatic illnesses, it is suggested to take mino on an empty stomach if the patient can tolerate it without too much nausea resulting. That helps absorption of 100%. A dry cracker is sometimes all it takes to alleviate any nausea. However, if not well tolerated then food is okay – around 85% is then absorbed. However, always recommended to avoid foods with any mineral content, such as calcium, magnesium, iron, as they will bind with the mino. 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)[user=2264]Ronsword[/user] wrote:
Yes Maz, I've heard of naltrexone from some nurses. They highly recommend it and we will look into it.
If I can trouble you with one more question? We're getting conflicting info on when to take the mino; some say with food, others on an empty stomach, so we're really not sure on this? With milk, not with calcium supplements:?. We just want to do it right!
Thanks for your kind words, Ron. It's terrific Anne has an open DO to work with, because even if he isn't all that knowledgeable, it's just such a gift to have a doc willing to work with us. He may even be open to prescribing the LDN for her.
If Anne does decide to try LDN, would be a good idea to wait till the worst of any herxing is over and done with, because LDN helps to boost immune function, which can produce a bit of herxing, as well. It's always better to introduce new things one at a time so you can tell what is having an effect, what may be producing unwanted side-effects, etc. There is actually a very good, approved LDN compounding pharmacy in FL, called Skip's Pharmacy and if you give the pharmacist a ring (ask for Dr. Skip), he should be able to provide you with some good info on LDN and how it works, in the meantime, while you research it. I believe he also has RA (?) so he can share a bit about how it worked for him. He probably also has a list of FL providers he can share.
Skip's Pharmacy: http://skipspharmacy.com/contact.php
Thanks, Lynnie, for offering help with the food and mino question. Ron, Lynnie is one of RBF's wonderful volunteers, living down under, in Australia. The time difference is a really great gift, because when we are all sleeping up top, Lynnie is around to help with those under the equator and the night owls up top! We're really fortunate to have volunteers right across the time zones in the US, too…from CA, to IL, to IN, to CT. So there is usually someone around. 🙂
Peace, Maz
Well, Anne started mino 100mg b.i.d, M, W and F. No side effects on this schedule, taken on empty stomach as suggested.
Will increase to daily in about 2 weeks. At least the show is on the road!
take care,
Ron
[user=2264]Ronsword[/user] wrote:
Well, Anne started mino 100mg b.i.d, M, W and F. No side effects on this schedule, taken on empty stomach as suggested.
Thanks for the update, Ron, and so glad to hear Anne has started her road back! Herxing can sometimes occur in a delayed fashion, a week or so (sometimes longer) after starting AP, so see how she goes, as she might want to delay upping her dose till she's through that patch. Less is more with AP and she may respond very well to this dose without the need for an increase, which would be great. I couldn't have been more severe and did so well on 100mg twice a day on just a MWF…more than that dose really knocked me for six.
Please send my good wishes to Anne, neighbors!
Peace, Maz
thanks Maz. And please, have an egg and bacon sandwich on a hard roll at Duchess for me will ya?:blush:
Ron
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