Any advice?

[nspiker]

Happy New year everyone….

As I write this, I can reflect on how grateful I am for my improvement over the last year. I hope that you can give me some additional guidance, that I can impart, with respect to my mother-in-law. We are in Houston TX, visiting for the holidays. She is definitely dealing with autoimmune issues. Yesterday, we spent the day at the medical center, and do not have the results of her tests.

It is pretty obvious that she has Raynauds (thanks to everyone here it was easy to spot), which was confirmed by the rheumatologist. She has a blood test from six months ago, with a positive Sjogrens. Her symptoms are swollen, puffy fingers that can break out with an ulcerated sore. Her left leg is very tight and swollen, and she has fluid leaking from her leg. Her fingers and feet are cold and blue. She’s lost 20 lbs. and even though she has very thick hair, is losing hair. She has developed shortness of breath over a number of years, more pronounced in the last few months. She’s seen two rheumatologists, one that mentioned a possible scleroderma diagnosis. We won’t know until the tests are back.

The rheumatologist yesterday prescribed doxycycline and bactrim for her leg, as she feels it is infected, causing it to leak fluid. She has been evaluated by a cardiologist, who does not think the swelling and edema in her leg is heart related. Neurologically, she has a clean bill of health. She did have shingles two years ago, prior to the onset of these autoimmune symptoms. One of the rheumatologists believes that it could have triggered her autoimmune response.

She started on antibiotics yesterday for the infection. Today, the pain is worse and she feels terrible. Do you think the antibiotics could be causing this increased pain? Do any of you want to provide an educated guess as to her condition and symptoms? Does it sound like scleroderma and raynauds or could it be raynauds alone? She’s open to alternative treatment, and was doing well the days that she took bromelain. It made a huge improvement. Can’t say enough about systemic enzymes! I don’t know how to direct her once she gets a formal diagnosis, other than to avoid the immune suppressing drugs.

I know it’s New Year’s Eve, and hopefully most of you are with friends and family enjoying the holiday! Any thoughts you may have would be appreciated.

much love to everyone….
nancy

[Lynne G.SD]

Hi Nancy;
This sure sounds like SD and the increased misery could be herxing.Been there and done that.I am sure others will have ideas when they come back from the long weekend.
Lynne

[Parisa]

Hi Nancy,

Sorry your mother in law is going through this (and you with her). The puffy swollen fingers with ulcers sounds like more than just Raynauds. Swollen fingers were one of my husband’s initial symptoms. The hard part when you are involved with someone else’s care is getting them to the right person especially if they are older. If you can get her to an openminded person, you might be able to direct the care more to finding the infectious cause versus a traditional autoimmune apporach. Many older people (perhaps a generalization?) are less open to alternative protocols and straying from traditional approaches especially if it doesn’t come from their doctor. Others here have also struggled with siblings who refuse to try the AP approach because it is nontraditional. Maybe we can hope that they give your mother in law an antibiotic for her leg that she will really respond to and then be able to make a connection to her symptoms improving to the antibiotic.

[nspiker]

Thank you Lynne and Parisa!

It’s so comforting to know there is always someone who understands, and who you can trust. Thank you both for your honesty and willingness to give me a possible diagnosis. It’s very scary to think that it may be SD and not just raynauds alone.

Are the ulcerated fingers and/or leg a symptom of SD? It appears more ulcerated spots are cropping up; one on her toe, and on another finger. Her leg is hot to the touch, and so are her (usually) cold hands. Both are swollen and inflammed and hot as can be. From your responses, it must be herxing or the antibiotics hitting the infection.

Here’s hoping that she will weather the side effects of the antibiotics, and feel better soon, so that we can prove that antibiotics are the cure.

Thanks again, here it is New Years Eve, and I so appreciate your response.

nancy

[Kim]

Hi Nancy,

So sorry to hear about your mother -in-law. It sounds like SD to me too and a case that’s progressing rapidly. I had horrible Raynaud’s (sudden onset), puffy fingers/hands/wrists, and extreme edema in my legs too. There is a member in Texas, GayG, possibly in the Houston area, that would be happy to talk to you and her. At one time she was involved in a SD support group and can save you some time weaving through the system. I haven’t seen her around the new board so let me know if you have difficulty contacting her, if you choose to do that. She is an amazing person who went from a life-threatening case of SD to a happy, healthy, functioning woman.

Good luck, Nancy.

Take care…….kim

[hopefulmama]

Nancy,

I am sending you (and your mother in law!) a hug. It does really sound like SD, but you have folks much wiser and more experienced than myself to help you through all of that. I just wanted to say that I think your mother in law is an incredibly blessed woman to have you as her daughter-in-law… she will begin to recover from SD before even getting a formal diagnosis, thanks to your expertise with AP and lyme treatment. Not to mention, your great compassion and warmth are sure to help so much during her time of crisis. At the very least she will never feel alone.

The leg tightening and fluid leakage sounds like the skin hardening and forcing out the moisture. I read another woman on the Inspire scleroderma site talking about how moisture kept appearing on her forehead and the dermatologist explained about the tightening process.

The last thing I have to say is controversial so I totally apologize if it is offensive in any way. I mean it with love. Given what our mutual LLMD says about the transmission of lyme, do you think it could be more than a coincidence that you deal with ReA and your husband’s mother possibly having SD? Given that Dr. Y says spirochetes have been isolated in breast milk and *other* bodily fluids (much like syphilis) is it not possible that there could be a spirochete passed from mother to son and then son to wife? Again, I apologize if that is a terrible thing to suggest. Dr. Y told my husband that I might have gotten my exposure to lyme from him since he is so outdoorsy, but that his immune system is higher and stronger than mine so while he evidences no symptoms and exercises like a champion, I went through 3 births and the loss of my dad… my immune system went downhill… and the bugs had their merry way with me.

Anyway they say autoimmunity runs in families but these days I always wonder if it isn’t simply chronic infections that run in families. The fact that she isn’t a blood relative of yours but you may have the same lyme infection (with different symptoms) seems significant to me.

Okay that is all for now. Sending all my best energy to your family today. Sounds like your mother-in-law is herxing, and that is a good thing! Warmest wishes for her total recovery in the new year.

A

[nspiker]

Thanks Kim,

The rheumatologist said that SD usually doesn’t present in someone my mother-in-law’s age. It’s usually someone younger. I don’t know if that’s valid or not.

As soon as we get an official diagnosis, which should be this week, I’ll contact Gay. I”ll probably be asking for a lot more help along the way…

It’s interesting because the antibiotics are changing her cold/blue hands and feet to hot and warm. For those of you who have been through this, is this the antibiotic working? It’s a significant change, and if it’s the antibiotic, then there’s proof that the infection is at the core (as Parisa said).

nancy

[mschmidt]

Nancy,

I’m so sorry to hear about your mother-in-law but, thank God she has you, and is catching this early. As far as it just being Raynaud’s, most of what I’ve read about Raynauds is that there’s only about 2-5% of people who have Raynauds Disease stand-alone. Otherwise, it’s secondary to disease, most often presenting itself in 95+% (and can present years prior to actual diagnosis) of SD cases. Not that it can’t be another AI disease but, it is definitely a hallmark sign of SD, with or without positive blood test results. I think that many early cases of SD are mis-diagnosed because doctors are looking for the positive blood test results before making a diagnosis, which is a shame. (I know that was true for me the first 14 months of my symptoms) As far as fluid leakage, AND skin tightening, I don’t think there are many other diseases that cause the skin to tighten. I believe that the exception to this is Multiple Myeloma and severe Thyroid disease, which can also cause hyperpigmentation and thick skin. (I was mis-diagnosed with both early on) It’s also true that most SD cases present themselves in women during childbearing years (mid 30’s to 50 yrs old) BUT, you can still get SD at any age. And, who knows how long she may have had some underlying issues, as these AI diseases don’t just “appear” overnight. In hindsight, although I’ve been healthy most of my life, I can remember having gut issues for YEARS (20 to be exact 😯 ) prior to having any symptoms of SD.

It’s interesting to me that she’s exhibiting any reaction to the antibiotics she’s on currently. That’s a good sign, in my opinion. I think it’s also worth looking into Lyme disease but, that is a very personal choice, and just a suggestion.

Hopefulmama–I guess I’m not offended by your comments because when Dr. F heard that my husband has had 2 bouts with Bell’s Palsy, one before we started dating, and the other just before we got engaged, he “perked up” to the possibility that I may have gotten it from him. There’s plenty of information out there about the various ways to transmit Lyme infections, and sexually transmitting them is certainly possible. (makes sense to me, since Syphilis is a spirochete infection, which can be transmitted in this manner) I also know of many families where the mother is sick with Lyme disease, the husband tests positive for it but, is fine, and the children also test positive and are either very sick or fine as well. Is it a coincidence? Hmmm…I’m not going to even answer that question.

Nancy, please feel free to reach out with any questions–we are all here for you. Take care, and you and your mother-in-law are in my thoughts and prayers.

Maria

[Lynne G.SD]

Hi Nancy;
I totally agree with Mama as I think this can be contagious.My sister who lives in the Yukon,way up north, has MCTD and just this summer showed the bull’s eye rash and tested positive for Lyme.She thinks she has likely had it for over 20 years.My nephew also has something going on that the doctor cannot figure out.Lyme can CAUDE Sd or just MIMIC it. so your MIL really should get tested.If you read http://www.immed.org you will see that Dr.Nicholson believes in transmission

[hopefulmama]

Wow Maria, are the numbers for secondary Raynaud’s really that high? My understanding has been that primary Raynaud’s is the most common form of the disease, with 3 to 5% of the general population experiencing Raynauds. Secondary Raynaud’s is associated with a variety of autoimmune diseases including lupus and of course SD (also Buerger disease and atherosclerosis), but from what I have read and been told these things typically only manifest in about 10% of folks diagnosed with Raynauds. So, that would be about 10% of (at the most) 5% of the general population… or .5%.

My entire family on my mom’s side suffers from mild Raynaud’s disease and has had it for decades. My mother, brother and sister. None of them have been diagnosed with any other autoimmune disease. That said, my mother’s mother died of ALS (lyme?) – and everyone on my father’s side (both of my grandparents, my dad, his brother) all died of Alzheimer’s (lyme?). So, I do believe chronic infection has been passed down on both sides generationally… and since I am the only child of both of my parents together (siblings are all half-sister/brothers) this may explain why I am the one hardest hit with weakest immunity.

My mom was just showing me her cold purple hands yesterday. She is 73 years old and otherwise in seemingly excellent health. She says she has had this problem since she was very young.

[DianeTexas]

I am sorry that I do not have any advice; however, I do see a dr. in Houston (Heights area) that provides Clindy IVs in her office. She helps me with my MCTD/RA but is not an AP dr. but she listens to me and is informed and open to alternative treatment plans.

[nspiker]

Thank you Andrea and Maria,

It brings tears to my eyes, all the compassion and offering of help. I really appreciate your kind works of advice and insight. I am confident she will find her way back to good health with your guidance.

Andrea, that is so interesting what you have to say about lyme. I have always wondered how I got it, since my husband is the outdoorsy one who hunts and fishes and loves the outdoors. I prefer a massage, pampering and a nice hotel – I don’t think ticks can find me there. Maybe I did contract lyme from him. I was hesitant to bring up lyme with my mother-in-law; it’s so much to take in all at once. But, that is the obvious next step, since so many have lyme-associated-SD.

Maria, that’s comforting to know that the response to the antibiotics is positive. It’s amazing that her fingers and leg have changed dramatically from cold and blue to hot and inflammed. Yesterday, she must have been herxing from the abx. I appreciate your knowledge of SD and will keep in the mind that the tests are not conclusive.

Maybe I will contact Gay, who Kim recommended, with the hope that she could help us navigate the doctors here in Houston. I know that will be an uphill battle, as my mother-in-law is not big on any medicine. She is basically on no medications, so I can’t imagine her following a lyme treatment protocol. My sister-in-law is a professor at Baylor and has contacts with the best rheumatologists, only that may not serve us if the ultimate path is AP or lyme.

Thanks again for everything….
nancy

[mschmidt]

Here is one of the links to where I got that info from. I know I read it in several other articles but, I didn’t save them:

http://dermatology.cdlib.org/DOJvol8num1/reviews/scleroderma/haustein.html

It certainly is possible to have stand alone Raynaud’s but, if combined with other signs considered hallmarks (skin tightening being one of them), SD is suspected, as well as MCTD. What I meant to say is, most SD folks have Raynaud’s as either a presenting first symptom, or along with other symptoms like swollen, puffy hands, feet, etc. SD presents differently in everyone so, I look at the “statistics” out there only as a reference point, not the end all.

Maria

[nspiker]

DianeTexas,

Can you please pm me with the info on the doctor in the heights. My in-laws live in the memorial area, and that would be fairly close.

I appreciate your help.

Maria,

I hate to say it, but the ulcerated fingers in your article looked very similar to my mother-in-laws. I don’t really know if she has skin tightening, or if it is caused by the swelling and inflammation.

nancy

[nspiker]

It’s been less than three days on antibiotics and my mother-in-law is feeling much better. The inflammation is down, and the redness is better. Her hands and feet are not too hot or too cold. It’s very interesting….

Thanks for all of your input. It kept us from overreacting when she was feeling so lousy.
nancy

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