I have difuse scleroderma

[Salome]

I’ve been on minocin 2x per day 5x per week for 5 years. I have lung fibrosis and now my weight is 89 pounds, I’m 5 feet and 83 years old. Since early November I became very weak and I can’t walk with out holding on to a person and only few steps.
I use oxygen to sleep and during the day when necessary. Anyone would let me know what to expect? I’ve been taking the antibiotics for 5 years but it seems that my ss has not gone into remission

[hopefulmama]

Salome,

Here are a few ideas to help you on your path. I’ve been frequenting this board now for over seven months and from what I have seen and read, most everyone with scleroderma also has Lyme disease which often does not respond to Minocin alone. It might take a more intensive antibiotic regimen coordinated by a LLMD to help. Sometimes the antibiotics have to be taken intravenously… such as in the case of Parisa’s husband who had lung fibrosis like you but is now almost fully recovered. Also look into parasites, yeast/fungus, dietary allergies (such as gluten, soy, dairy) and cutting out all sugar. For the lung fibrosis I believe she says N-AC was very helpful, along with treatment for babesia which is a lyme co-infection.

You may also want to look into an immune modulator called Low Dose Naltrexone, which has been very helpful in a wide variety of autoimmune disorders. And if you search for posts by Kim on this board (a now-retired volunteer) you will see that she has written about a product that really helped her with weight loss, but I can’t at this moment remember what it was called.

Do you have a physician helping you coordinate your care? It might help to find an AP doc or a LLMD or both… and the volunteers on this board can send you a private message with a list of recommended doctors.

Best of luck to you and you are in my prayers!!! I truly believe healing is possible for all of us, and on this board I have watched it happening for so many.

Warmly,
A

p.s. From my research I have found that clindamycin is supposed to be more effective for mycoplasma infection than minocycline… you may want to look into oral or IV clindy.

[Salome]

Thank you so much, I will look into your suggestions. God bless you
Salome

[nspiker]

Hi Salome,

I am so sorry that your SD continues to progress, after five years on AP. I agree with all that Andrea said; there must be more to your underlying infection that Minocin alone is not touching. Did you have any improvement in those five years on AP? If it were me, I would definitely be on Minocin for seven days a week, and not skip the weekend.

Do you have an AP doctor or a doctor willing to prescribe IV Clindamycin? That would be my next step. I don’t have SD, but I have been on IV Clindamycin for over a year, and it has been extremely beneficial. Minocin alone did not touch my underlying infection. I am now being treated for lyme and babesia.

My MIL was just diagnosed with SD, and just started on Minocin. She was on two different antibiotics for a leg infection for a month, and many of her SD symptoms resolved. Sometimes Minocin alone is not enough. We were able to get her rheumatologist to agree to start her on IV clindamycin in three months.

Were you ever bitten by a tick, that you can remember? I don’t remember ever having a tick bite, but had many mosquito bites, and a terrible spider bite over the years. Somehow I contracted lyme and babesia. Lyme is pervasive these days.

Are you on any traditional SD immune-suppressing meds? Where do you live, and do you have access to an AP doctor?

My thoughts and prayers are with you. I hope that you will get immediate help to kick your SD into remission !
Please, let us know how you’re doing, and how we can help…
nancy

[Parisa]

Salome,

I second everything Nancy has so wisely said. Obviously, the Minocin alone is not enough for you. Look into Lyme disease, IV Clindamycin. Also, Zithromax and NAC were very beneficial for my husband’s lungs.

Here’s a link I posted a while back about treatments that worked for my husband’s pulmonary fibrosis:

viewtopic.php?f=1&highlight=Parisa+and+lungs&t=2868

[Joe RA]

Hi: Salome, can you give more of the history of your sceroderma, like when and did it start, what kind of doctor diagnosed you? what is the dose MG.s are you on? are you eating healthy food? are you taking probiotics and/or vitamins, other medication? ect. A good healthy diet,vitamins & probiotic program is important in one’s recovery and wellness. With this info. more informative answers will come your way. The best to you,.. Joe K.

[aynurrzepa]

Hi, Salome. I’m sorry to hear that after 5 years of AP you still experience some progression of your SD! easy to dishearten but we must try not to.

Have you looked into viral infections or any other co-infections?

MY SD is thought to be triggerred by strep infection or at least played a major role in starting it off. So we thought till very recently. Maybe it still stands true but my ASO titers keep coming back negative which currently shows I maybe do not have latent strep infection lurking somwhere in my system possibly causing SD… So while I will continue monitoring ASO and strep, I decided to double check on other possible infections I may have had that contrbuted to my SD or maybe even caused it. I remembered vaguely during my first PG I tested positive for CitoMegaloVirus (CMV) antibodies. What I have read many times, CMV is linked with SD… So I re-tested again and confimred just now that indeed my memory was right – I did have CMV and it is so similar to strep that possibly, it’s CMV I had when I was 3 and not strep which has then trigerred by SD… So, long story cut short, I now will work on adding viral cleansing to my protocol. Possily I will start with herbal remedies and see how it goes.

Nevertheless, Minocin is definitely helping me as I’m seeing subtle changes in my tissues – they ARE getting softer, almost unnoticably to the extend I think I’m imagining but then everybody in the family confirms that yes, I’m “getting softer”… And my ANA came back negative for the first time whether it’s a lab error or not. The fact that all these changes started AFTER I started Minocin to me shows that I still have mycoplasma anyway. Possibly combination of 3 infections is what caused that overpowering effect on me and started SD off… And becasue I’m not addressing CMV yet, my progress is so slow…

[Salome]

Thank you all for your replies to my post. I’m going to start a parasite cleansing tomorrow. Hopefully that is going to help me gain some weight unless I have gastro complications due to the SD. I have the feeling of being full most of the time and after I eat I get a fatigue-like feeling coming from inside. Right now I’m staying with my daughter in Las Vegas, she is caring for me, since I can hardly walk due to my weakness.
I don’t know if I’m a candidate for IV treatment because I”m so weak, I’ve seen Dr Franco in Riverside, California and he diagnosed my SD back in 2006 he put me on Minocin that helped my skin condition right away. My home is in Southamerica (Peru) and over there Dr’s don’t believe in AP, so everytime I visit my girls in CA and NV me and my daughters do research about new treatments for difuse SD. Last year, my girls took me to UCLA lung specialist and I saw Dr. Lee who looked at my ct scan, my 6-minute walk test and the breathing test, he just told me not to accept any cortisone, continue with minocin and use my aspirators salbutamol, sereditine, as needed. Now, I could not do the 6 minute test, I feel weak to walk and I get very tired even with the oxygen.I’m definitely going to start NAC ASAP. Would anyone refer me a Lyme disease MD? Based on your replies I think I should test for that too and get help. Thanks again for all your kind replies, if anyone can think of anything else please let me know. I’m 83 and I have lived a great life until three months ago when my health went down hill, but I still have hope.
God bless you all and make you well.
sincerely
Salome

[nspiker]

Hi Salome,

My heart goes out to you. You certainly haven’t lost your fighting spirit, and we’re going to try our best to help you sort out the underlying basis for your scleroderma.

My recommendation is to order an Igenex lyme test, #188 and #189 (http://igenex.com/Website/). If you have medicare, they can be billed directly, and you do not have to pay out-of-pocket. Just call, and they will send you a kit for a blood draw. Also, if you have medicare, and since it’s covered, you may want to get additional co-infection tests for babesia, erlichia and bartonella. I don’t always think lyme is the cause, but I do believe that our dysfunctional immune systems are susceptible to different viruses, bacteria, parasites and protozoa. Given this infectious basis, a lyme-literate doctor is key to treatment, because today’s infectious disease doctors will not treat us. So if it’s lyme, or if it’s another infectious component, a good lyme-lterate doctor can save your life.

Where in CA are your daughters? There are many good LLMD’s in N. CA and one good one in So. CA. I’m not aware of any in Las Vegas. Unfortunately, most LLMD’s do not take insurance, however, the one in San Diego takes some insurance, including medicare. I would be more than willing to pick you up at the airport and take you to either Dr. F. or the LLMD in San Diego. I see both of those doctors.

Another thought would be to go back to Dr. F. and get on IV Clindamycin. I don’t think your weakened state would preclude you from tolerating the antibiotics. Do you know if you have insurance to cover IV’s? Are you taking probiotics for your stomach issues? Could you have candida overgrowth?

That’s amazing that a mainstream UCLA specialist would tell you NOT to take cortisone. He must have thought you were on the right path.

My advice is for you to follow your instincts. What do you feel has contributed to your SD. Can you attribute anything in the last three months, that would have triggered your increased symptoms? What resonates with you? We’re here to help in any way we can….

blessings to you,
nancy

[Maz]

@Salome wrote:

Would anyone refer me a Lyme disease MD?

Hi Salome,

I will send you the full list of LLMDs for CA and NV in a PM (private message). To find your PM, just look to the top of this page and click where it will say (1 new message).

There are about 4 LLMDs listed for NV and there are a plethora of them in CA where there are some of the most experienced in the country. Those in CA who see these docs can probably offer you the best insight.

All the best in your searches! 🙂

[Parisa]

Salome,

I have sent you a PM.

Parisa

[Joe RA]

Hi: Salome, The elderly often live a sedentary lifestyle and are at risk of for a broad range of vitamin and mineral deficiencies and more-so in people with existing health conditions which can effect ones absorbtion of the needed neutrients from the vitamins and/or minerals. I recommend you get a ( Vitamin/mineral Deficiency Test ) before going on to other medications. Neutrition is very important in disease recovery, your body weight at 89 lbs and your sudden weakness leads me to believe you may have a neutritional deficiency. This is just a thought. The best, ..Joe

[Maz]

@Joe RA wrote:

Neutrition is very important in disease recovery, your body weight at 89 lbs and your sudden weakness leads me to believe you may have a neutritional deficiency.

That’s a very good insight, Joe….seems a number of folk with SD here have also reported celiac disease or gluten intolerance, which can cause malabsorption issues.

[Salome]

My heart goes out to you. You certainly haven’t lost your fighting spirit, and we’re going to try our best to help you sort out the underlying basis for your scleroderma.

My recommendation is to order an Igenex lyme test, #188 and #189 (http://igenex.com/Website/).

Dear Nancy, your kindness is amazing, thank you for the reply and for offering to pick me up and take me to the doctor,
I have contacted the lab you recommend by e mail asking for a quote on the tests. I don’t have medical insurance, as I mentioned I just come to the States to visit my daugthers, I enjoy living in my house in South America. While staying in USA I want to improve my SD condition through research and from learning from other fellows that also deal with SD or other auto inmune diseases. Your suggestions are great and I am going to look into them. My daugther who lives in Southern CA, (Burbank) is going to pick me up this weekend to take me to her house. Over there I’m going to look for a LLMD from the list that I got from a couple of volunteers.
God bless you Nancy, I hope you are soon free of any illness. Please keep in touch
Sincerely
Salome

[Salome]

@Joe RA wrote:

Hi: Salome, The elderly often live a sedentary lifestyle and are at risk of for a broad range of vitamin and mineral deficiencies and more-so in people with existing health conditions which can effect ones absorbtion of the needed neutrients from the vitamins and/or minerals. I recommend you get a ( Vitamin/mineral Deficiency Test ) before going on to other medications. Neutrition is very important in disease recovery, your body weight at 89 lbs and your sudden weakness leads me to believe you may have a neutritional deficiency. This is just a thought. The best, ..Joe

Thanks Joe, that makes lots of sence. I will ask my family practice Md to test me for that. I think the parasite cleanse should help as well.

Best
Salome

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