For those with Scleroderma

[daughter-sine sclero]

Hi, I am new to your group.  I found this website  last night online looking and searching for answers, doctors or ANYTHING…that will help my mom fight this horrific disease.  My name is Nicole and my moms name is Victoria.  She has been coping with many different “unexplainable” illnessess and symptoms for the past 4 or 5 years.  Doctors saying “it is all in your head”  Friends and family (except myself) , not believing or understanding this illness or what exactly is going on with her.  Many, many countless nights on the computer searching for answers…first they thought is was lupus because of her high ANA count, then they ruled that out and diagnosed her with a connective tissue diesase.  WHAT???  Neither one of us had any idea what that was so we both started looking up different connective tissue diseases and what symptoms she had.  After many long hours and over a years of testing and different doctors and her symptoms progressively getting worse, her sensitivity to cold, not being able to open jars and lids, acid reflux, being so weak and tired all the time, sleepless nights…etc.  Going to so called specialists (rhematologists) who actually said it was all in her head and the ABSOLUTE FRUSTRATION of not knowing what is going  !!!   The doctors we go to don't know what is going on and keep referring her from doctor to doctor for different tests and we are LOSING TIME!!!  The quicker we get to the bottom of this the better the results is what I read but how do we get to the bottom of all of this when we can't get to a qualified physician who knows how to “diagnose” scleroderma.  Also, my mom doesn't have the outside appearance with her skin…she has what I believe to be called sine(seen-ay) scleroderma    ne (SEEN-ay) sclerosis is a term used by many physicians to describe systemic scleroderma without the characteristic skin involvement. In fact, the word ?sine? is Latin for ?without.? Patients with sine sclerosis may have symptoms of either limited or diffuse scleroderma, causing damage to the internal organs.  Because there are no external manifestations of the disease, it can be difficult to diagnose.  As with other forms of systemic sclerosis, however, the presence of Raynaud?s phenomenon and positive autoantibodies can be useful indicators. Complications of the internal organ systems can be serious and often life threatening.  This to me is even worse because it is much harder for a doctor to diagnose because it is not seen on the outside but all internal which is much much more dangerous and life threatening.  So you all can understand mine and my moms frustration of not knowing and ALL the precious time that has passed without being officially diagnosed with scleroderma because of the (incompetent doctors or doctors that are unknowledgeable to the disease or diagnosis of the disease)  So for years we have been spinning our wheels and going in circles and not getting ANY treatment for scleroderma, just getting treatments for some of the symptoms.  So what has that got us?  Like I said, ALOT of time that we don't have as the disease progressively gets worse.  My mom also changed her diet and went on the macrobiotic diet.  She actually thought she was doing much better but for no reason at all EVERYTHING flared up over the weekend.   This time it was much much worse, life threatening in my eyes…she was eating dinner and started coughing and started to choke, she continued to cough then she couldn't breathe because her throat closed up on her, I can't EVEN imagine how scary that was for her…. so just how far does it have to go before we can get to the proper doctor who can treat her and stop this horrific disease because it is ONLY GETTING WORSE…and we don't have ANY more time!!!  She has read the book you keep referring to because I saw an infomercial and ordered it for her.  So last night I googled antibiotic therapy and it led me to this wonderful website that I stayed up most of the night reading all the different testimonials and realized…YES…THERE IS HOPE!!!!  So I contacted the only scleroderma specialist in Houston TX Dr. Maureen Mays this morning to make an appt for her, she treats ONLY scleroderma patients and does alot of research so I KNOW she would be the BEST doctor for my mom.  Then I find out that she is booked up  till the END of the year!!!  I couldn't believe that…so now I am not sure what we should do. 

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

[Goodwife]

I'm sorry to hear of your mother's condition – you can either post requesting a list of AP docs (in your area and throughout the country) or visit http://sinnottandtobenmedarts.com/.  This site is Dr. S in Iowa, who treats people from all over the country.  We live in Pennsylvania, but were thinking of travelling to Iowa until we found a doc about 1 hour away from us that would treat with IV antibiotics.  He got the protocol from Dr. S (My hubby was diagnosed with scleroderma Aug 06)   Dr. S. is probably the most experienced in treating with IV abx for these types of diseases, as he worked under Dr. Brown, whose research, etc. is the basis of Scammell's book.  We spoke with him over the phone, he is very nice.  And many, many people on this board have been treated by him.  If you can't travel, if you can find a local doctor, he will work with them via phone/FAX, etc. to get the protocol to you.

Good Luck to you and your mother!

[daughter-sine sclero]

Thank you so much for the information you gave me.  We will contact Dr. S and see if there is any waiting period.  However, do we need to go see a scleroderma specialist to “diagnose” it first or can Dr. S look over ALL her records and come to a conclusion from her past medical history and symptoms and start her treatment right away.   Like I was saying we need to tackle this ASAP as you already know.  So would this   be the next step you recommend for us to pursue?  Do you think it is BEST doctor to go see even if we can find a doctor that is closer?   My mom is able to travel so we are looking for the BEST doctor available to go see that will produce the quickest results.  Distance is not a problem ….RESULTS are what we are looking for.. so I will call Dr. S in Iowa.  Thank you again for the referral your help is GREATLY appreciated!!!

[Lynne G.SD]

Hi Nicole;
       This is very strange,my cousin is Nicole and my grandmaman was Victoria.I have systemic SD and am doing very well,in total remission.Tell your mom not to give up as AP does work for all types of SD.My girlfriend had the same as your mom and is in remission as well.I have heard of Dr. Mayes but if I remember correctly she is a traditional rheumatologist….I could be mistaken though.Do you have a nice family doctor? Mine is the one that gave me the prescription for minocycline long before I found an AP doc.They rheumy I had was as useleles as could be but when she saw my improvement after a few years she continued the prescriptions.Have you had your mom tested for Celiac disease?It is often the cause of SD and about 70% of people with any chronic disease have celiac or celiac syndrome.Mom can order the test online at http://www.enterolab.com and have her read up on http://www.celiac.com   It took me many years and several antibiotics along with major diet changes to get well.Had to fiddle with dosages and types of antibiotics before I found what works for me.Every person is different so there really is no set form of AP.If you have questions,just whistle.Lynne

[daughter-sine sclero]

Hi Lynne,

Yes, I believe Dr. Mayes was a traditional rheumatologist but she did alot of research for scleroderma.  Now she ONLY treats scleroderma patients but is too booked up to see her.  No, my mom has not been tested for celiac disease.  We will have to look into it and do the test online.  What would that mean if she was positive for that disease?  Would that help us in diagnosing SD or what?  I guess what I am saying and trying to understand is what significance or insignificance does that have on SD?  Is that going to help my mom because she would completely eliminate the causes of it from her diet?  Sorry, I am just trying to get to the bottom of this and NOT let any more TIME go by….and since we are not getting the proper answers from her doctors, I don't know what to do.  Thank you for all your help, I will talk to my mom about doing the test online and see where we go from there.

CONGRATULATIONS ON YOUR REMISSION!!!!!!

 

[Lynne G.SD]

Hi Nicole;
       Once SD has been turned on it is almost impossible to find a cure but as my doctor says….you have to find the cause ,fix it and then AP will work.I was wondering why I could not go into remission or even get slightly better.Rictchi and I started AP at the same time and he had good but slow results right from the beginning.Nothing happened for me because I had no idea that I had Celiac which caused leaky gut which cause systemic yeast and all of which allowed the micoplasma to get the upper hand because my immune system was to busy fighting these problems to ever be able to fight the micos.There looks like there might be a cure,read up on it at  http://www.marshallprotocol.com  .For the time being I have to contend with remission and constant antibiotics because I can't avoid high light.I have an orchid greenhouse and if not for this business I would not eat.As soon as I wind down this business you can bet that I will try it.Take a look at old postings under the heading…foods to avoid and why…. and  have you had your vitaminD checked   This will give you a bit of an idea about this other antibiotic protocol.   There is soooooo much to learn and it will have your head spinning so stick with our great gang and we will help you out   Lynne

[steph-sclero]

Hi Nicole,

Your Mom's case, sorry to say is 'A' typical, as far as many of these auto-immune diseases are concerned. I wasn't diagnosed with systemic scleroderma for years. They thought it was all in my head (one doc even suggested I see a psychiatrist) then they misdiagnosed me again and again. At one point they were quite happy to go ahead and treat me for MS, irregardless of an inconclusive diagnosis. It was myself in the end who researched all the connective tissue diseases and came up with scleroderma. In the end they could not deny all the evidence. When I was finally diagnosed they went on to tell me they thought I had actually had it for some time. (Idiots!) Then after that you finally get a diagnosis, you have to fight to be seen by the best (you will go through a lot of doc's who think they're the best). I live outside the capital city of Canada and was seen by 'The Scleroderma Clinic' there and then by the head of it, only to be as much as told to go home and die, there was no cure. Follow your gut, research, research and then fight for what you know to be true and then only the best at it. Even if you can't get a diagnosis, go and see a doc on the list of AP doc's and see what they can do for you. It's certainly better than banging your head against a wall waiting for something or someone who may or may not come.  You have made the first step already by contacting this board. You're not alone! Your mother has a wonderful advocate in her daughter and that's as important as a good doc. We're here for each other.

Take Care, be strong and never give up hope,

Steph

[A Friend]

Randy wrote:  I have been on 100 mg minocycline twice daily since 4 Feb 08 and saw Riverside Calif AP specialist doctor this week.  I will change to Minocine shortly and should begin a pulsed Clindamycin IV AP next week.  I am ready to beat the hell out of my SD.  Go AP!  Randy

Go, Randy, GOOOOOOO!  We are all rooting for you!!!

[daughter-sine sclero]

Hi Lynne,

I have been reading up alot on  http://www.marshallprotocol.com since you gave me the link to the site.  It is so complex but it makes since since they are saying that scleroderma is caused by different kinds of bacteria and the MP destroys the bacteria but it is very complex and difficult to understand the full picture.  YOU were not kidding when you said ” there is sooooo much to learn it will have your head spinning.  I really appreciate all the help and info you have given me and my mom.  You have really got us going in the right direction.  However, I just have a few questions to try and understand…(well more than a few but a few will do for now).  You were saying you are going to give the MP a try whenever you retire your current business due to the sunlight exposure you would be exposed to.  So you are currently on AP and have been for some time, correct?  So what is your advice for my mom to start doing?  What is the difference between the two?  Is it mostly the medicine and the effects it has on you?  I am sorry if I am out of line asking this on the AP site, but I FINALLY feel like I am gaining some headway in this and just really don't know what we should look into.  Do we first go have the  D Metabolite Tests done and then submit the results and go from there or what??  I am so sorry but I am just trying to figure out our next move. 

VERY LOST and CONFUSED…with my head REALLY spinning NOW!!

[daughter-sine sclero]

Hi Steph

Thank you for your response and words of encouragement for my mom.  Yes, I am researching and researching and STILL doing MORE research and now my head is SPINNING like you wouldn't believe.  I am looking into both the AP and MP and trying to see the major differences between the two and which course of action we should take. 

Thank you for ALL your HELP and SUPPORT…yall are right the SCLERO GANG is GREAT!!! 

[steph-sclero]

Hi Nicole,

Your head spinning will now be your symptom (eh.eh), we all have it. Personally I would start concentrating on AP. Do AP research, get an AP doc and go from there. A good AP doc will help you out with what tests to start with and go on from there. From my experience MP is something you try if AP does not hold all the results you want in the time frame you want. Now AP doesn't work overnight either but some people see even slight results in 6 – 8 weeks. Everybody is different. So get a good AP doc, they'll be your biggest source of help and in the meantime keep up your research. The more you know when you meet with your doc the faster he/she can get things up and going because you have already done the leg work.

You and your Mom Take Care!

Steph

[Lynne G.SD]

Hi Nicole;
       I know there is only so much you can digest in a short time unless you have a very good science background and even then it is terribly confusing.I am an archeologist/paleoanthropologist by training.To do that I had to take pre-med .Even though it was years ago it sure came in handy.AP just means “antibiotic protocol” and there are many of them .The one I am on mostly resembles Dr. Nicholson's  http://www.immed.org   Most people on this board start out with the Harvard protocol wich is 200mg minocin dayly on an empty stomack ans 2 hours away from food.For me this did not work because I had several underlying issues that prevented the antibiotics from helping.If after 6-10 months of taking mino with no results at all one had better try to find the reason it is not working or try other antibiotics.The Harvard protocol is definately the easiest one to try and that is why so many people start there.For those with SD the one big benefit this protocol has is that minocin seems to work by breaking down the collage.I sure can testify to that as all the excess collagen has left along with what I should normally have.My skin is now tissue thin and like crepe paper….but at least I am alive and kicking.
   As I said before ,when I can close the greenhouse doors for good I will start MP as I truly think it can be a cure.From a science point of view it makes the most sense of all the different antibiotic protocols.To your mom I would say….try to get control of the SD with the Harvard protocol,give it the best part of a year.If it does not help you will have to think about adding other antibiotics and or other protocols.First thing she should do is get tested for yeast,celiac,food sensitivities  so as to avoid the possibility of slowing down the AP.I wasted 5 years and the worst part is that I had no clue that I had any other problem other than SD other than a white tongue a year before coming down with it.   Lynne

[Carmen]

Hi, Nicole – I live in Houston and was diagnosed with linear scleroderma in March 2006, but I also have the antibody for systemic scleroderma (anti Scl70).

Don't waste your time waiting for Maureen Mayes – neither she nor any rheumy in her Houston office believes in AP.  My first visit was with her office and I when I asked about AP, I was told that it doesn't work and that the people who prescribe it and take it are quacks.

Here's a link to Mayes' research into scleroderma and antibiotics.

http://www3.interscience.wiley.com/cgi-bin/abstract/107612469/ABSTRACT?CRETRY=1&SRETRY=0

Get one of the RBF volunteers to send you a list of docs in Texas – Dr. K in Lufkin is excellent, as is Dr. M in Houston (holistic doc).

I saw Dr. T in Boston within a month of my diagnosis.  He prescribed Minocin which I have been taking for 2 years.  It has worked wonderfully well.  I have had no progression of my linear scleroderma and still have no signs of any systemic involvement.

I have also seen Dr. K in Lufkin – she is terrific.  I am currently seeing Dr. M in Houston because I don't want to travel – he is also great. 

Please be encouraged about AP – it has worked for me and for many people.

One suggestion:  get your mother tested for gluten sensitivity.  After reading the posts on this Board, I had myself tested and found out I have had a life-long gluten intolerance.  I believe that taking Minocin and reducing the load on my immune system by eliminating gluten have been the keys to my success so far.

We are NOT the quacks!

Best of luck to you and your mom.

–Carmen

 

 

 

 

[daughter-sine sclero]

Hi Carmen,

I have read many success stories how well AP works and they are in remission, but we are really considering the MP because it completely goes away if I understand correctly.  Here is our reasoning, if you are going to go through the antibiotic therapy and have to continue it the rest of your life.  Why not do the MP and only have to do it for 18 months to 5 years.  I just started researching all of this when I stumbled onto the website last week, so there is much more I need to learn.  So I was wondering your feelings on the MP.  Have you looked into it at all?  The doctor you are referring to in Houston, Dr. M.  Who is this and can we go to him right away or should we go to a more experienced doctor like Dr. S who trained under Dr. Brown.  I just got a list of doctors and Dr. M wasn't on it.  I do appreciate your advice about Dr. Mayes, I will heed your warning there because we DON'T have ANY more time to waste so I need to make the right move.

Take care!!! 

[Carmen]

Nicole – I have researched the MP and believe that is represents sound science and the closest thing to a cure.  I spoke to Dr. K in Lufkin about it (she has experience administering it) and she advocated that I hold off unless I developed more serious symptoms since, in her opionion, the protocol can be difficult and in many cases, depressing due to reduced light.

John McDonald and others on this board can share their experiences with MP – they will undoubtedly have additional insights into just how much light has to be avoided and coping with that aspect.

I can send Dr. M's contact info to you, but I don't believe he's experienced with MP.  He has had good results with AP and RA patients.  Dr. K is probably the best choice for a Texas MP doctor, and it's not difficult to get an appt.  She also accepts insurance.  Dr. M can do IV antibiotics as a “jump-start.”

Please e-mail me at carmthomp@aol.com and I will send you Dr. M's info.

-Carmen

[Author]

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