You were all right…SD diagnosis

[nspiker]

Hi Everyone,

We received the results of my MIL’s blood tests, and as many of you suggested, Scleroderma was confirmed. Her SCL70 was negative but her Anti-Centromere was high (215), positive Lupus ANA, positive Rheumatoid Factor, and positive Sjogrens SS-A. Her Lupus D3 DNA, Anti-CRP, Sjogrens SSB and SCL70 were negative. Looks like a mixed-bag of autoimmune stuff going on.

My MIL went to her appt. armed with The New Arthritis Breakthrough in hand, which made me really happy, because she must feel that it is worth pursuing. Of course she was told that AP does not work, and this was old information, and that there is much more current research and published material (blah, blah, blah). That said, they did say there was no cure, just palliative care.

Here’s where I need your input. I PM’d Gay, who Kim recommended, and she has a SD doctor in the Houston Medical Center, who specializes in SD exclusively. She also has a cardiologist who is SD knowledgeable. Thank you Kim, it saved me lots of time! I am assuming we need to establish these experienced doctors, given the diagnosis. These doctors are not believers of AP, and will prescribe minocycline, but reluctantly. So, do you concur that we need to establish a traditional Rheumatologist who specializes in SD? She’s already sick of doctors and has a diagnosis. We have limited ability to push more doctors on her, as she is resistant to go from doctor-to-doctor-to-specialist-to-specialist . She’s seen a respected Rheumatologist in the medical center who diagnosed her condition, and an ok cariologist who did an echocardiogram, and said she was fine. Where do we go from here?

How can I help my MIL? This is what’s running through my head:
Is it necessary to see the best traditional SD Rheumatologists and Cardiologists?
Should we get her to an AP doctor immediately?
Should we just find a way to get her on Minocin right now?
Ultimately, should we seek out an AP doctor in Texas, or should we fly her to CA to see Dr. F.?
Do we schedule an Igenex test, or should we take one thing at a time?

Do these autoimmune conditions always have an infectious basis? I feel so responsible in recommending and guiding my MIL. For me, it was an easy decision to start AP. I knew my condition was infectious-based. SD is very serious, and I don’t want to lead someone else without thorough knowledge. That’s why I am going to lean on you, and all of your collective knowledge. I so appreciate your input.

This is all so overwhelming, and more difficult because we are in CA, and she is in Texas. Can you please weigh in on your guidance and any thoughts you may have….

thanks, nancy

[Maz]

@nspiker wrote:

We received the results of my MIL’s blood tests, and as many of you suggested, Scleroderma was confirmed. Her SCL70 was negative but her Anti-Centromere was high (215), positive Lupus ANA, positive Rheumatoid Factor, and positive Sjogrens SS-A. Her Lupus D3 DNA, Anti-CRP, Sjogrens SSB and SCL70 were negative. Looks like a mixed-bag of autoimmune stuff going on.

How can I help my MIL? This is what’s running through my head:
Is it necessary to see the best traditional SD Rheumatologists and Cardiologists?
Should we get her to an AP doctor immediately?
Should we just find a way to get her on Minocin right now?
Ultimately, should we seek out an AP doctor in Texas, or should we fly her to CA to see Dr. F.?
Do we schedule an Igenex test, or should we take one thing at a time?

Do these autoimmune conditions always have an infectious basis? I feel so responsible in recommending and guiding my MIL. For me, it was an easy decision to start AP. I knew my condition was infectious-based. SD is very serious, and I don’t want to lead someone else without thorough knowledge. That’s why I am going to lean on you, and all of your collective knowledge. I so appreciate your input.

Hi Nancy,

If I’m reading your MIL’s results right, her labs are showing evidence of Mixed Connective Tissue Disease (MCTD) with scleroderma predominant? It’s pretty much one of those “garbage” diagnoses, if so, because it’s a mixed bag of everything and they don’t know what it is. A lot of Lymies get thrown into this same trash bucket. 🙁 Just ask Kim and Parisa…

It’s really got to be your MIL’s choice what she wants to do. If she can manage a trip to see Dr. F., it would give her a rheumy and an AP doc all in one shot…a one-stop option. This could save her a lot of angst in terms of fighting the system with Dr. M. (the TX rheumy “expert” who doesn’t believe in AP for SD). If you talk with Susan SD, however, who is a statistician, she did some fine interpretation of Dr. M’s SD/mino study and found it flawed. Unfortunately, Dr. M’s study is the one used by most rheumies to deny AP works, and all we have is one small trial, by Dr. T., showing that it does work in a good many cases. There are, however, more studies creeping out of the woodwork, tying SD to infectious causes (see last eBulletin, for instance).

As you’ve already discovered, there is nothing in mainstream medicine to stop the progression of SD, just palliate advancing symptoms. So, it’s really what your MIL wants to do, now that she’s read the book and is getting informed about her disease.

She could begin with AP in TX – I can’t remember where she’s located, but there is a Dr. P. doing orals and IVs in Houston. This doc isn’t greatly experienced, but open to consulting with the likes of Dr. S. In the meantime, she could get on the wait-list for Dr. F. and have IGeneX tests run in advance thru Dr. P. Then, if it looks like Lyme might be the culprit, she could head to a doc, like Dr. C. in MO and either keep or cancel the Dr. F. appt (if she wants a rheumy on board, though, he would be a good option – Maria sees both Dr. F. and her LLMD). There’s lots of options with all this, though it sounds like you want to keep this as simple as poss for now. It is a lot to take in, in the beginning, I know. If she could just get started on AP, then that’s a good start.

You might also want to give her the Dr. T. article that went in the last eBulletin, in case she comes up against any nay-saying docs…Dr. T. is, after all, a Harvard rheumy! 😉

https://www.roadback.org/EmailBlasts/ebulletin_fall10.html

You asked, “Do these autoimmune conditions always have an infectious basis?”

The simple answer is “Yes,” if one believes in infectious causes for rheumatic diseases after having read all the Brown material and anything else related to this subject to make an informed decision. If it makes more sense that the immune system suddenly turns on one’s own body, then no… It really has to be an informed decision, because to some extent, starting AP is an act of faith – i.e. starting a protocol where two opposing views exist. As a Lymie, yourself, you know all about this. 😉 Ultimately, the way I look at it is that I either palliate myself or I try and go for root causes. As your MIL is elderly, her view may be different from yours or mine. My elderly MIL has PSa and AS and her choice is to palliate, because she lives alone and doesn’t feel she can navigate the ups and downs on her own and the degree of self-advocacy needed to fight the system in UK. So, each person’s situation is very different. Thing is, we know people do get well again from SD on AP…this just doesn’t happen on conventional meds, so regardless of whether one adheres to infectious theory or not, AP works for SD, bearing in mind that it is a longterm therapy and takes a lot of patience to turn things around.

The good thing about AP is that it can be taken in addition to other conventionally used meds for SD. So it doesn’t have to be an either/or. If she sees a rheumy, like Dr. F, then he could supply her with AP and any supportive adjuncts she’d need along the way.

So, the bigger questions may be things like, is your MIL up for a longterm therapy? Do her finances allow for out-of-network docs and different standard of care treatments? Is she able to travel to see experienced AP and/or Lyme docs? What is her comfort zone about working with a conventional rheumy while also using AP? In the end, probably the most important questions will be ones that only she can answer in making a fully informed choice about the therapy.

Does that help at all or make the lanscape even more blurry?

Btw…you’re an amazing DIL to be right on this and helping your MIL….in So CA, no less and right near Dr. F! There are no mistakes in life, eh? 😉

[nspiker]

Wow, Thanks Maz.

This is exactly why this board is so important. You have no idea how much all of your feedback promotes dialogue and consideration. Maz, you answered so many questions that were running through my head, and gave us alot to consider.

I didn’t know you knew all about Dr. M. That makes me wonder if it is worth seeing her. That was exactly my question. Now I’m thinking it’s a waste of time, because my MIL does not want to see lots of doctors and take lots of medication. I would probably pursue an appointment with the SD Cardiologist, because her current cardiologist is marginal, and she has symptoms of possible cardiac involvement with left leg edema, leaking fluid and shortness of breath.

My MIL is the prefect person for AP, because she doesn’t want all the harsh drugs and she doesn’t want to see a bunch of specialists. She just wants to get well, immediately. Even before the diagnosis, I warned her, there was no quick fix. I knew she had a serious autoimmune situation going on, but because I had not been well myself, had not been to see my in-laws the last year. My husband and daughter had visited without me. She communicated many of the same symptoms I’ve experienced. She has that deep pain in her arm, between elbow and shoulder, just as I experienced and many have described. She also has the left leg swelling and tightness, as I did. Makes me wonder….

Love this comment Maz, “in So CA, no less and right near Dr. F! There are no mistakes in life, eh? ;)” I like that Dr. F would be a one-stop doctor. He could also test for lyme through Igenex. I can’t imagine my MIL on all those lyme meds. I hope that she is able to recover with just AP alone.

Please, anyone else with input is appreciated. It so helps to have you all, with your experience, weigh in on this.
nancy

[richie]

Hi—Maz missed an important point to be considered –if she didnt miss it perhaps then I mis -interpreted it –there are opposing views as to cause of SD —while many feel infectious –I would think just as much is written about environmental causes to SD –the point not driven strongly enough home is that AP works for SD and one does not need faith in an infectious cause excluively to proceed with AP –SAdly all these years of me taliking about the many many other properties of minocycline that might be at work in the treatment of SD just never gets addressed —-There are quite a few rheumatoligists who use AP as a first choice for treating SD –It might take traveling
but I am certain someone here can forward those names !!!!! richie

[hopefulmama]

Nancy,

I’m so sorry to hear about the definitive diagnosis. While it’s helpful to know what you are dealing with, this is obviously not good news. Sending all my strength, positivity and prayers to your MIL and your whole family tonight.

As bad as things look right now, I do see some positivity in the picture as you describe it. First, there were no SCL-70 antibodies, right? Which means she is more likely to have the CREST form of scleroderma/MCTD (as opposed to diffuse). That alone gives her a better prognosis from what I have read. Secondly, she starts out from the first moment with a support network (us) and your wisdom! The fact that she can go right on AP without further depressing her immune system seems like a huge blessing.

If she can travel to CA to stay with you, I for one feel so lucky to have Dr. F in my life. Not to mention, perhaps she could also see Dr. Y? Since the two of them and their medical practices came into my life, everything has simplified so much. I love that I don’t have to go see rounds of specialists any more – each of them are a “one-stop-shop” and so I can breathe so much easier knowing that they will be assessing the full picture for me, and checking up on me frequently. Now that I’m on a protocol, I’ve actually gotten back to living my life. Taking care of my family. Trying to make each moment count. Your MIL sounds like a woman who wants to get back to living ASAP.

Having a rheumie that also believes in AP and who feels comfortable checking into lyme… all in one package… it really takes the added anxiety out of an already-stressful situation. She won’t have to fight to be heard, or to try things some rheumies might deem unorthodox.

I also totally agree that it doesn’t matter *why* AP works. What matters is that it *does* work, better than anything else out there. In the end what matters is that both you and your MIL end up healthy with many long years to come.

Take care and my family is thinking of yours and sending you all our very best.

A

[Kim]

Hi Nancy,

Your head must be swimming about now, but here’s my 2 cents. I wouldn’t bother with Dr. M., what’s to be gained there? We ALL agree that Minocin has helped our SD, so if there’s a doctor willing to start her low and slop and then ramp up, why wait? She could start infrared sauna therapy ~ there are proven results with cardiac patients (supervised, of course).

You also have the option of Dr. K. in Lufkin who would likely be a one-stop doc, and although she is not Lyme-literate, would be open to testing.

Does your MIL use computers? If so, that would sure help in allowing her to do her own research and to be comfortable with her treatment options. I know traveling to doctors is extremely exhausting and can set you back so keeping it simple has to be considered.

Good luck, Nancy, you will be her favorite daughter-in-law! 😉

Take care…..kim

[Maz]

@richie wrote:

Hi—Maz missed an important point to be considered –if she didnt miss it perhaps then I mis -interpreted it –there are opposing views as to cause of SD —while many feel infectious –I would think just as much is written about environmental causes to SD –the point not driven strongly enough home is that AP works for SD and one does not need faith in an infectious cause excluively to proceed with AP –SAdly all these years of me taliking about the many many other properties of minocycline that might be at work in the treatment of SD just never gets addressed

Hi Richie,

I think I did allude to this in my post?:

“Thing is, we know people do get well again from SD on AP…this just doesn’t happen on conventional meds, so regardless of whether one adheres to infectious theory or not, AP works for SD, bearing in mind that it is a longterm therapy and takes a lot of patience to turn things around.”

Thing is, Richie, the foundation was set up to preserve the legacy of Brown who believed in infectious causes, so it would be a bit strange if no one ever mentioned infections as related to rheumatic disease, including SD. I agree with you that environmental toxic exposures likely contribute to compromising immune function and the immune-modulating props of minocycline are also very important, too.

That said, this doesn’t explain the herxing phenomenon and why folks get better on different classes of antibiotics that don’t have the immune-modulating props of tetracyclines. So, this is important to consider, too, as well as the emerging research that infections may be indeed tied to SD as a co-factor to environmental exposures. Here’s a new study published in Sept saying as much:

http://www.ncbi.nlm.nih.gov/pubmed/20863912

This study concludes that while no distinct infectious cause has been proven beyond doubt…:

“It is very likely that the infectious agents are cofactors in a specific hormonal and environmental setting that mounts an immune reaction, which leads to the emergence of the disorder.”

I know we’re chatted about all this before, so no need to go over old ground…suffice to say, I’m deeply grateful for your years of volunteering for RBF because, without previous generations of dedicated volunteers such as yourself, RBF wouldn’t be here today. 🙂

[RickinCA]

Cutting to the chase here: Dr F

If you are able to see him logistically, go for it. He may even have you advance some blood work to them before you actually see him, or at least your most current labs if they are extensive enough for his assessment. I am one of the world’s greatest skeptics and was very wary of AP when I first became symptomatic and started looking for answers. None of five doctors had a clue as to how to approach what was going on with me (and I’ll spare the board another list of details and symptoms.). I think Maz is right on when she says AP requires a leap of faith because it does fly in the face of orthodox medicine as we know it. But sometimes I guess you have to take that leap, because anyone with any rationale whatsoever can see straight away that the opposing views are only that, and they offer no real alternative help. Not only with AP. Just the last few months, a very close friend has been keeping me posted about her father who has been fighting a stage IV cancer. He, the father, is as well a retired physician. They’d pretty much given up on him, but he decided to go to Houston to a center there (not MDA) for an alternative therapy. The head of the clinic is an oncologist, so it isn’t like they are leatril (sp) purveyors. Point: He did his research and found some very real alternative hope, and is now rebounding with the new treatment.

Dr F has a beautiful clinic in Riverside, Ca. His staff and facility are warm and receptive. And his success rate in treating these strange illnesses is apparently high. In my case, a patient for about four months now, it seems to be effective (knocking on wood..).

Just my .02….

[Parisa]

Hi Nancy,

I sense your anxiety regarding how to guide your MIL. The issue isn’t that you don’t believe in AP or know of any AP doctors it is how to guide your MIL. You’ve stated that she doesn’t care much for doctors and is open to alternative practitioners. I don’t really see the value in going to a traditional rheumatologist that doesn’t practice AP. What would be the point other than to tire everyone out? You might get a confirmation of the scleroderma or a diagnosis of MCTD or UCTD. How would any of those diagnoses change the treatment plan. It sounds like there are doctors in her neck of the woods that can initiate treatment. If after a while you felt she wasn’t responding you go always load her on a plane to see Dr. F. Down the road you can always look into Lyme but the important thing right now is to get her started on Minocin. Everything will all fall into place.

[nspiker]

Richie,
The reason I asked the question,”Is it always an infectious basis,” is because it’s easy to decide for yourself the best plan of action, but for someone else, there’s a greater responsibility to have all the facts. As long as AP works, that’s all that matters.

Andrea,
Thank you for the insightful and uplifting message. You’re right, there is much to be grateful for. My understanding of my MIL’s test results corroborate your thought that this is limited SD/MCTD, and hopefully not systemic. That in itself is a blessing!

I spoke with my MIL this morning, and she really liked the book and is very interested in AP. Last night she didn’t take the Plaquenil and beta blocker because one of those meds was making her nauseous and fatigued. She’s doesn’t have high blood pressure or high cholesterol, and has never needed any medication. I am questioning the blood pressure medication, and if this could be causing her fatigue and nausea, since her BP is normally (120/70). Is it common to prescribe beta blockers for SD, and if so, why?

Kim,
Thank you for confirming that she doesn’t need to see Dr. M., and that it would be a waste of time. I don’t see any reason we can’t find someone to prescribe minocin. In fact, one of my thoughts was to see if the Rheumatologist she’s seeing next week (not the one that diagnosed her, but the one that has her on antibiotics) would consider AP. I thought about doing a write-up up and faxing it to her prior to the appointment, and see if she is open to the idea. If willing, she could always consult with Dr. F.

BTW, I’m definitely her favorite daughter-in-law, because I’m the ONLY daughter-in-law 😆

Ricklin
Thanks for your thoughts. I also see Dr. F. and know how wonderful his office and staff are. I love Audrey, his nurse. Now that I am getting such great advice and have a clearer sense of direction, will consider Dr. F., if we cannot find the resources in Houston.

Isn’t that typical that a Physician would seek out “alternative treatment” when faced with his own mortality. When I spoke with another board member about AP treatment, she said she likes to ask herself what this doctor would do, if faced with the same decision, on someone they loved like their mother or child. It might change their resistance to alternative options, especially when they have no better option.

Parisa,
You have definitely clarified how I need to handle this!!! All these thoughts were running through my head, because it is such a big responsibility, and I better be sure because it’s someone that I love’s life at risk. If it was RA, I wouldn’t even think twice about what to do. It’s because SD is so serious, and I am not an expert like you all are, so I wanted to be sure that along with AP, she didn’t also require an experienced doctor in SD to assess possible complications.

I’m confident, between her appointment next week, and the other options of doctors in Houston, we will find someone to prescribe AP. Thank you everyone for the clarity and peace of mind you have provided. Thank you for pushing all of the unimportant stuff aside, and helping me to focus on first things first. Your council is invaluable and I am so grateful for all of you…
nancy

[richie]

Hi–It is not very common to have a beta blocker prescribed –The vast majority of Sd patients will be given an ACE inhibitor which acts to control blood pressure and help the kidneys –for Raynauds a calcium channel blocker is the med of choice –Havent heard very much about the use of beta blockers !!!
richie

[nspiker]

@richie wrote:

Hi–It is not very common to have a beta blocker prescribed –The vast majority of Sd patients will be given an ACE inhibitor which acts to control blood pressure and help the kidneys –for Raynauds a calcium channel blocker is the med of choice –Havent heard very much about the use of beta blockers !!!
richie

I was wrong. She was prescribed Norvasc (amlodipine), which is a Calcium Channel Blocker.

Hey All,
What are your thoughts about taking a Calcium Channel Blocker and Plaquenil with AP?

nancy

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