For those with Scleroderma

[Cheryl F]

[user=244]daughter-sine sclero[/user] wrote:

LOST and CONFUSED…please help me and my mom before it is too late…. Thank you Nicole

Nicole:

I am glad that you are here to try learn what treatments are available to help your mother regain her heath.  I would like to encourage you to take this one step at a time.  I don't want to make a particular statment about the MP protocol, but I do want to say that MANY, MANY, MANY scleroderma patients have recovered with the plain Oral Minocin Antibiotic Protocol.  Some patients may also add other antibiotics and other diet modifications or supplements. Those things have been usefull to many, but please don't think that it is absolutely necessary.  Just plain AP has saved many with Scleroderma.  Don't let all the other choices overwhelm you, get your mom on AP ASAP. 

For me, I was told about MP when my daughter was first diagnosed, and I was told that we should limit her vit D intake and her sun exposure.  If I had taken that to heart, I would have dismissed AP as a option and most of the people who participate on this forum know how that would have turned out.  My daughter was going down hill fast, with lung involvement, digital ulcers that ate away the tip of the bone of one finger, extreme fatigue, heart palpatations, and the list goes on.  If I would have believed that the MP protocol was necessary, we would not have been able to do it. It is my feeling that an experienced MP doctor is even more difficult to find than an experienced AP doctor.  Now if you have a good MP doctor available, then go for it, but it is clearly a more difficult protocol to follow, much more restrictive. 

All of this is just to say, don't get overwhelmed.  IF your mom starts AP and then feels that the MP is what makes sense to her (and you) then you can add the other elements. 

Anther point, it has been said in this thread the MP is more likely a “cure”, I am extremely uncomfortable with that statement, and I don't think that there is any evidence that MP is more of a “cure” for scleroderma than AP, which it is NOT, it is a treatment than can result in long term remission, MP is under development, it is research and the outcome of this research is extremely exciting in understanding these diseases, but I don't beleive that it is anywhere near being labled a “cure', I am not sure that there are even a representative sample of Scleroderma patients on MP.  There are many scleroderma patients who are able to discontinue the AP and remain in remission.  Many people don't even try to go off the med because they don't want to even have the chance of the disease coming back on them.  But many do stop the AP and remain in remission long term.

My advice would be to find a doctor that is convenient, AP experienced and supportive.  If Dr. RK in Lufkin is within reach i would hgihly recommend her, as it sounds like she does both protocols.  Take it one step at a time, but get started with some type of antibiotic protocol as soon as possible.

Cheryl Ferguson

 

[Nancy]

Hi all…..I know I am jumping in, but have a few questions.  Iam an OLD OLD OLD timer….was diagnosed in 2000 and was on the boards a lot, but thankfully have been very very busy with my young family.   I was on Harvard protocol for 3 years and became very healthy…..enough to have children!  I went off to have and nurse my first…went back on shortly about a year after having my daughter but had yucky lupus like reactions (fevers and severe pain) so went off and was healthy again (it did loosen my skin immediately at that time anyway) I concieved and nursed my son a year later and this past fall started having morning stiffness and very slight changes in my knuckles again.  Dr. T put me back on Mino and I flared with those lupus symptoms AGAIN!  So we switched to Doxy.  I have not had luck or lessening of symptoms at all.  I am headed back up to see him next week and am researching again what other options are out there.  I was looking into the MP but HOLY COW!  I honestly do not think I could handle it right now.  I am the primary care taker of a 2 and 4 year old and need to be outside with them.  I could manage to change my work space (I am a family thx) In anycase, does anyone have other successes with something other than Harvard?  Also….after reading a lot of the info there…..do you think I may possibly have overlap lupus if those are the symptoms I am having on the Mino…..and now I am really regretting not being on Mino.  Has anyone had this problem after stopping Mino?  My dermatologist was not surprised……but why?  And can I manage to figure this out without losing my magic green pills?????  Dr. T seems perplexed and isn't sure which direction to go.  HELP!

Nancy

[Cheryl F]

Nancy,

Welcome back, I guess??? I am sure that you wish you didn't have the need to be visiting us again.  One suggestion that I have is that you consider contacting Dr. S in Ida Grove,  IA (send me a Personal Message if you want his contact information).

Dr. S is very experienced, he worked with Dr. Brown for a bit and he doesn't seem to stick to the “Harvard” protocol.  He uses antibiotics outside of the tetra, doxy, mino family.  He does the IV Clindy with most (maybe all) patients.  Dr. S will provide a brief telephone consult if you call during certain hours.  I think I would want his take on what he would recommend that you do next.  You could also ask Dr. T to consult with Dr. S, but I am not sure if that would be beneficial as Dr. S is a firm believer in the infectious componet of these diseases, and from what I gather, Dr. T is not, they may not speak the same AP language. 

Let me know if you want Dr. S's contact information.

Cheryl

[Maz]

Hi Nancy,

Did Dr T suggest pulsing MWF with mino? Just wondering, because I had a horrible reaction, too, to being on the Harvard Protocol – that is, mino daily at 200mg (bid). Felt like I had battery acid flowing through my veins and distinct worsening of all my symptoms on continuous dosing. I'm pretty sure it was herxing, because I got a little of that feeling on my mino days with pulsing, but this has gradually lessened over time and was nowhere near as severe as on continuous dosing.

I think the problem is that no one really knows for sure if the lupus-like side-effects of mino are actually a side effect of mino or whether it's a sub-clinical manifestation of Lupus itself that is just coming out in a herx. It's a puzzling question.

Would be interesting to hear from anyone who has had these symptoms in the past, but found that they resolved by switching to pulse dosing. Does seem that the lower dose resolved things for me, but just wouldn't know or like to say for sure in the case of mino-induced Lupus. 

Do you think Dr T would be open to mino pulsing or trying a combo of doxy and zith?

Peace, Maz

[Kim]

Hey Nancy,

Like Maz, daily dosing did not work well for me.  I'm one of the few SD people that pulse dose and have done quite well.  I had one round of IVs with Dr. S that gave me a good boost then the oral combo that worked best for me was 200 mg Mino MWF and every other Friday, substitute the Mino with Zith.

Best wishes figuring this out…kim

[Nancy]

Thanks all for your quick responses…..I did start the Mino on only 50mg once a day this past time to try to reduce any possible Herx as that is what we thought was happening with the Lupus symptoms, but they still occured and definitely got worse over time and increase in Mino.  I was reading up last night as to whether pulsing Mino alone would be helpful/tolerable…it sounds like it has at least had a good result with some of you…..great news!  I feel like I am starting over again from square one, but know I am far from that!  Obviously reading about MP, he is quite adament that his way is THE way and that you need the Benicar and avoidance of vitamin D.  I am not sure where to go or what direction to go in right now….my head is spinning too!  Ugh!  It does seem compelling that there may be more to this than what I thought with Dr. T, but what and how to deal with it!?!  I must admit I am frustrated in that this disease is so elusive and unknown.  I HATE feeling like I have to be my own doc in some ways.  The other “issue” with me is I am in NO PAIN AT ALL right now and overall feel really well…..just some lingering morning stiffness and a TEENY tendon pain in my right achilles only when I point my toe very hard…..soooo the prospect of inducing pain is just awful for me.  But I guess what I am reading is that is sounds like that might be an inevitable part of a road to better wellness….no?!?! 

Thank you again for being here for me and everyone who needs you! 

[Terri9967]

Hi all.  I was just recently (last week) told I have Scleroderma and Fibromyalgia complicated with Pulminary Fibrosis as well and I have been on oxygen 3liters 24/7.  I have the severe swelling in hands and feet and now my face the past few days.  I have skin hardening on feet and extremely bad on elbows to the point that the skin has cracked from normal bending of arms.  I am just now getting hardening on my fingers.  The joint paint is aweful.  I am concerned that now that my face is swelling the next thing will be face skin hardening as well seens how that how my feet and hands started out.  The fatigue is extreme!!  I am no longer able to work and fighting for SSD now.  The drepression has now set in as I am newly married with 3 teenage daughters and have always worked atleast one job fulltime.  It drives me crazy being stuck at home all the time and so tired all the time.  I can barely keep the house cleaned up and sometimes it goes days with out being cleaned up.  My new husband entered this marriage knowing that I was ill cause of the oxygen and pulminary fibrosis but with now finding out what I have I am worried about his own health as he is going on 52 and working 10 to 12 hours a day trying to keep the bills caught up and he is getting run down and sick himself.  He is also a recovering alcholic and I would hate to see him relapse because of the stress of my illness.  I am seeing a SD specialist but not till June 6th.  I am currently on medrol and due to start plaquinel after getting the ok from eye doctor.  The have me on vicadian for pain and that doesnt help with the fatigue, I dont take that very often as it wipes me out and doesnt really touch the pain. 

I was told that the scleroderma is on my optical nerve and that I will eventually lose my eye sight because of this.  I just got new glasses about 8 months ago and they are already not strong enough anymore.  I have not read to many things about SD effecting other peoples eye sight. 

Wow sorry just realized how long this has become.  I have a tendancy to go on and on.  Was told that its the medrol that I am on that makes me do that.  But again Im sorry for being long winded.

Any support or advice would be wonderful.  I am hoping that my SD specialist will try me on AP.  But there is not a doctor in the PA area that is listed as a supporter of AP.

Thank you for listening

Terri:headbang:

[Nancy]

Oh Terri,

I am so so sorry you have been hit with this horrible disease!  I am so glad though that you found your way here.  This protocol literally saved my life.  I would strongly encourage you to fight for a closer appt and find out if there is an AP doc near you.  The great folks here can let you know that.  Please know there are ways for you to get healthy again and those here are true blue example, me being one!  I was diagnosed in 2000 and got pretty sick very quickly and just as quickly got healthy again on AP.  So I know without a second thought that AP works….it does take time and patience and positive thinking, but it does work!  Please keep us posted…..and again be sure you fight for yourself!  Have you considered a counselor for you and/or your hubby???  I know I am biased, but also know from going through diagnosis and disease myself that therapy was extremely helpful in dealing with my own fears and tribulations.  Also a must is to go to the info pages on this site and learn as much as you can as well as reading Henry Scammels Scleroderma book….MUST reads.  They were so encouraging and really made sense.  They are also very easy reads….read it in one night!!!!

Keep us posted,

My best,

Nancy

[Terre]

    Hi Cheryl,

i just found this site after reading Henry Scammell's book this past weekend.  I was diagnosed with diffuse systemic SD about 2 years ago.  This website has really given me a lot of hope and answers.  I still am trying to sort this all out.

I noticed you live in Northern California. Maybe you could share your daughter's doctor's name with me.  I live on the San Francisco peninsula.  I did get  a  list of names from John McDonald who advised me to contact you.  He mentioned Dr. G in Santa Rosa and sent a list of other doctors on the Road Back list.

Thank you,
terre

[Cheryl F]

Terre:

Jess saw Dr. G in Santa Rosa a few times.  We also flew back to Boston to see Dr. T.  She now sees Dr. F in Riverside (she lives in San Diego 10 months of the year).

I will send you a personal message with more detail.

Cheryl Ferguson

[daughter-sine sclero]

Hi Cheryl,

I wanted to thank you for all your help and advice that you and ALL of the sclero gang has given to me and my mom.  Well I just wanted to tell you that it has been a GREAT help and all of you have been a big inspiration and encouragement to my mom and the SUCCESS of AP Treatments and we are going to see Dr. S in Iowa.  We made the appt this morning and booked our flight this evening for the week of May 12th.  We were sitting here and my mom looked over at me and said “thank you”, you know I would never have done this on my own, you just saved my life”  I said “I know, I am just so glad that I found The Road Back Foundation to help direct me in the right direction to help direct you”  So again, I thank you and I thank ALL of the sclero gang for responding to my cry for help and guiding me in the right direction so that there is not anymore time lost. “SHE” will be on here talking about her remission and giving advice to someone scared and new to the “sclero gang” and she will be another GREAT SUCCESS STORY about the wonderful success of the AP treatment and Dr. S in Iowa.

         The SCLERO GANG IS THE BEST!!!  Thank you, Nicole:D

[daughter-sine sclero]

[JBJBJB]

Nicole,

You are such a wonderful daughter all mothers would love to have. I pray for you and your mom. Pray she will be in remission soon.

I am also heading for Iowa this coming Monday to see Dr. S.  on April 22nd. I echo what you just said, and I am really touched by all the wonderful people on this board whose stories really inspired and encouraged me . I am very thankful for finding this AP treatment and thank you all so much for helping me to understand this AP process. I am learning new information every day.

I will keep y'all posted!!!JB

 

[marg]

Nicole, how lucky your Mom is to have a wonderful daughter like you! Others on the board may refer you to doctors who can get you started, even if you have to travel. Some of them do phone conferences with your local doctor – could be your GP.

Some people gather information from this site and persuade their family doctors to prescribe Minocin for them – the drawback of course if that the doctors aren't a very knowledgeable resource if you need to change your protocol etc.

I know AP works for RA and SD ( scleroderma) as my adult daughter, who has both, is doing very well.

You're on the right track! Follow up, whatever it takes- and good luck to you and your Mom.

[daughter-sine sclero]

Thank you Marg…but I am the lucky one to have been blessed with such a incredible “mom.”  She is a rare gem and anyone that meets her sees the beauty of her inside and out and realizes that she is one of a kind, and a it is a true gift to anyone to have her in your life.  So when my mom was having all these unexplained health issues, one after another, with no answers to what was wrong or what was causing all of these problems.  She was very healthy and we couldn't understand what was going on with her, why she was having all these problems.  So they did tests after tests after tests until one day they discovered she had a very high ANA-antinuclear antibodies and that she had a mixed connective tissue disease.  “Mixed connective tissue disease…what is that?  I had no clue so I began researching different mct diseases because the doctors that we saw were clueless to anything that was going on with her and all they could tell us was that she had a high ana and she might have lupus.  So we went and tested her for lupus and the tests revealed that she did not have lupus but she was showing some of the signs for “scleroderma”  I had NO idea what SCLERODERMA was so off to the computer I went …and I couldn't believe what I read about slceroderma and what it does to your body and “there is no cure” and it can be fatal.  NO…this could not be true, my mom is diagnosed with a terminal illness with “NO” cure.  I had recently lost my dad to cancer (3 yrs ago) and I was not going to loose my mom!!!  So I began to research all of the alternative treatments and all the different experimental treatments they were doing for scleroderma.  There were so many different options that they were testing but none of them were in reach for my mom.  Her rheumy was telling her that he can treat the symptoms but there is NO cure, and “I think alot of this is in your head”  I  couldn't believe that when I heard him say that I was ready to strangle him right then.  So all that did was make me realize that NO we ARE NOT GIVING UP!!!!  So I knew then that her doctors were not going to be any help at all.  I was so lost and helpless didn't know what to do …all I could do was pray to show me a way.  Then one night after many many many hours of research on the computer I stumbled upon this site and found THE ROAD BACK FOUNDATION and the FIRST sign of HOPE and the closest thing to a cure the “Antibiotic Protocol”  So I stayed up all night reading all the bulletins and it was then that I found the “Sclero Gang” and read ALL of the incredible testimonials about the success of the AP Treatments. So I joined in on the discussion … and the sclero gang helped show and guide me and my mom in the right direction… on the road back to recovery and remission as we prepare to get ready for our first appt with Dr. S in Iowa….and I OWE it all to THE ROAD BACK FOUNDATION and all the wonderful people that have helped answer my questions and inspire us and guide us with your testimonials about the success of the AP treatments and the remission that my mom will be experiencing soon…I can't wait for that day, and thanks to “everyone” on this site, I will have many more days to spend with my mom.  For as I was saying, she is too special and unique and this world needs her around for A LONG TIME so she can share her love and joy and friendship with anyone who is lucky enough to have met her and encountered her in their life.  ME I am the luckiest of them all…because she is my mom and she is headed for remission!!!

THANK YOU “ALL” FOR ALL YOUR HELP!!!:roll-laugh:

      YALL ARE THE BEST!!!!   Love, Nicole

 

[Author]

Posts