SD Confusion

[Wayne]

Hi Guys,

I guess I'm just sharing with you my current confusion and disappointment. When the swelling to my legs and hands settled a bit some 8 weeks ago, I thought and was hoping, that I had turned a corner and was getting on top of this disease. My symptoms are still slowly getting worse and many parts of my body are becoming much stiffer. It seems as if things are scaring up and the affects are a bit worrying. My hands, neck, arms, legs, jaw, etc are much more inflexible and harder to get full movement. You guys know what I mean and there is no need to rave on about SD symptoms. When someone askes me how I am at the moment, I really don't know what to say. I am very reluctant to be negative, but I need to be real.

I think maybe I need to be patient, as perhaps my Dr is carefully getting a balance back into my system (gluten free, low sugar, dairy free, low salisylates, preservative free, loosing 10kgs in past 9 weeks) and attacking Lyme (Biaxsig) before hitting the SD disease harder than what we are now (Clindy IM 300mg weekly). I'm not taking Minocin any more as the Dr feels that it is not an effective med with me.

I think that when I fly east again in a few weeks to see my Dr, that she will crank things up to blast the mycoplasmas to bits. Probably with oral Clindy and I would hope to do another run of IV Clindy as well. Don't know how much oral Clindy I should take, but I know I need to take something.

Oh well, there we have it. Soldiering on in confusion, but still determined to do what ever it takes.

Cheers Wayne

PS. Currently having a break with my wife Helen in one of the most beautiful places on earth called Esperance in the south east of Western Australia. Just awesome.

Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.

[Maz]

[user=1894]Wayne[/user] wrote:

I think maybe I need to be patient, as perhaps my Dr is carefully getting a balance back into my system (gluten free, low sugar, dairy free, low salisylates, preservative free, loosing 10kgs in past 9 weeks) and attacking Lyme (Biaxsig) before hitting the SD disease harder than what we are now (Clindy IM 300mg weekly). I'm not taking Minocin any more as the Dr feels that it is not an effective med with me.

I think that when I fly east again in a few weeks to see my Dr, that she will crank things up to blast the mycoplasmas to bits. Probably with oral Clindy and I would hope to do another run of IV Clindy as well. Don't know how much oral Clindy I should take, but I know I need to take something.

Wayne, so sorry to hear of your current situation of feeling like you're worsening. I understand your doc wanting to go after all your infections, but I'm a little confused as to why minocycline would be taken off the “menu.” The immune-modulating effects of mino, quite apart from its antibacterial props, are so important for sclero patients in terms of slowing/halting progression.

I think what I'd be questioning is why the mino is thought not to be good for you. This is one instance where I'd be insistant, as a patient. I know we have to feel that trust in partnership with a good doctor and I'm sure you do (is it Dr K?), but I'm hoping other sclero patients will chime in here to question, “Why no mino?” Or, at the very least, another tetracycline with clindamycin IVs? Oral clindy can be quite hard on the gut, too.

Perhaps your doc has a plan to get rid of other infections, first, but sclero can be a bit of a freight train and I am wondering why you can't be on mino and add other complementary abx to it? Minocycline is being used for Lyme, too.

Any thoughts from other sclero patients here?

Have a wonderful time in Esperance with Helen! It sounds idyllic. If you have a chance to post piccies and feel up to it, would love to see this corner of the earth.

Peace, Maz

[jlc6166]

Wayne,

I will second what Maz said.  I think mino (brand time release preferably) is the perferred way to go to treat SD.  The other perscriptions appear to be secondary to the mino.  I would discuss mino with your doc again.

Blessings,

Jack

[Lynne G.SD]

Hi Wayne;
          It took about 5 years on Mino alone to reach full remission .I have stayed on that until a couple months ago when we found out I have Lyme .Now I am taking several antibiotics and feel even worse than when I tought it was just SD.Going from no pain to terrible herx pain is quite an eye opener.My doctor figure 2-3 years of this until things are better again.
          Hang in kid,at least you have not wasted a decade as I have.
                        Lynne

[Kim]

Hi Wayne,

I am so sorry you're dealing with worsening symptoms.

You mentioned 300 mg. of Clindy IV per week.  When I traveled to one of our best AP docs for my SD, he typically gives 10 IVs over a 5 day period of 900 mg each, so you're getting far less.  I really agree with the others that it's too soon to give up on the Minocin.  Other options are asking your doctor about adding Zithromycin in with the Minocin.  That was an excellent combination for me.  Oral Clindy is really hard on your gut so when people are taking it a high doses the IVs are preferred to spare the gut.

I had two doctors tell me that once I started on abx that the SD was going to run it's course and hit all the spots it was going to anyway, just not as bad.  That proved to be true in my case so I saw a lot of changes over a short period of time.  Eventually everything was heading in the right direction, but of course you're doubting your treatment choice constantly.

I really feel for you because it's hard to know when to pull the plug on treatment if it's not working.  The SD people on this board will say they got worse before they got better, if that helps.

Hang in there, Wayne.

Take care…..kim

[lynnie_sydney]

Wayne – so sorry to hear this. What it sounds like is that the doc believes that mino has become immuno-suppressive in its action in your body (I was told the same thing after it was tested on the machine). Also, if she believes Lyme is the cause of your SD, it should be noted that this particular doc doesnt treat super-aggressively with abx as many of the Lyme docs do in the U.S. – she has a different combo approach to treatment. What is important is that you are comfortable with the treatment regime and the rationale for it and I agree that the 'why no mino/other tetras? question needs to be thoroughly explored with her. Even to the extent of asking what would be the downside of adding that in to the mix for a while, given your increase in symptoms. 

How long have you been on this regime now? Perhaps Kim and the other SDers could chime in with some idea as to how long their symptoms seemed to worsen before they saw any improvements. Must be difficult for you right now Wayne, alot of questions and few answers. Hang in there! Lynnie     

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[richie]

Hi-Even if the mino is immuno suppressive  -that action may well be very important to scleroderma patients –you really need something to slow down the runaway immune reaction of over producing collagen —minocin is thought to have an effect on the regulation of collagen production –The basic etiology of scleroderma is over production of collagen –this action is responsible for so many symptoms of scleroderma —-No one has ever proved that daily doses of minocin  suppress the immune system to a fault –my personal experience is that minocin daily  acts a regulator of collagen production –if this is done through immune suppression –so be it —Since starting and taking  minocin 200 mg daily for well over 10 years I never get any flus etcs and perhaps have gotten a cold only once or twice -this compares with a twice yearly cold before starting minocin –so perhaps immune suppression due to minocin is not necessarily a negative thing !!!!
richie

[mschmidt]

Wayne,

I agree with what everyone else has posted.  The first thing that struck me about your post was the doctor taking you off the Minocin.  When I was REALLY sick, and really confused about what to do, I just started the Minocin on my own, after reading the Henry Scrammel book on Scleroderma.  I couldn't get on mino fast enough!!  Then, I sought out doctors who believed in treating SD aggressively because by then, my upper body was affected, as well as I could feel burning and tightness happening in my lower body…and my knees were SO swollen I could barely move.  Lyme was in the back of my head but, to be completely honest with you, I was PETRIFIED about what SD could do quickly, and wanted to get a head start on that first.  My first trip was to get the 5 day twice daily treatments of Clindy.  Then, I went to Dr. F in California to see what he wanted me to do, as I wanted him to be my doctor for SD.  I felt HORRIBLE for 5 straight months on clindy–I really felt like I was going to die.  Then, my body just started to heal.  I then explored more seriously the Lyme connection, because I wasn't afraid anymore of the SD.  (the most serious damage was already reversing so, I felt confident in moving forward with other possibilities)  The common denominator in all of my abx is the Minocin.  I will not give that up yet, because I really do believe that it keeps things at bay with the SD.  My lyme protocol has been an added bonus for me because it's made me recover even quicker.  I've said it before, and I'm saying it again—I don't care WHAT I have, I just want to be treated for it all. 

It's entirely your decision on how aggressive you want to be with treatment.  I just knew what I wanted my regimen to look like, and frankly, it's easy for me to say it was worth all the pain because I'm not in any real pain now.  If you would've asked me the same question a year ago, I'm not sure I would've given the same answer.  It was brutal, and I was in constant pain.  You do NOT have to do that to feel better but, do know that you will likely feel worse before you feel better.  What that means as far as time for your particular body, I can't answer for you.  Just know that no matter what, there are always options to help make that easier for you, and we're all here to offer support whenever you need it.

Wishing you a wonderful time with your wife, and hang in there!  You WILL get through this.

Maria

 

[Wayne]

Hi All

Thanks so much for replying with your experience and information with regards to my situation. I think that I do need go back on to minomycin (brand name in Aust) for both the immune-suppressing qualities as well as anti-bacterial. I don't see why I should be so different to anyone else and not have the minomycin work on me. Like you said Lynnie even if I ask her what harm can it do by adding it to my mix of abx. I can of course continue to get a script from my rheumy and do it anyway.

I was wondering during the inflamatory stage, does all the collagen get laid up, and then progress to scar tissue in its next stage? Right now, I seem to be developing chords of scar tissue where before it was inflammation. I still obviously have quite leaky capiliaries as I have a fair bit of the reddish colouring to legs and arms. My face is a little sore and thickened, and it worries me that it will be pulling tight at some stage.

It seems that hitting SD in the early stage is the best way to go, and I really have to just figure out how I'm going to do what I feel is the right thing to do, including MINO and IV clindy. Doing IV in AUST is not easy to set up and last time it involved me staying in hospital during the whole IV process – which was 12 days. I'm pretty sure that my rheumy will humour me by allowing another run, this time 5 days (like you guys do in the US) , even though he has no faith at all in AP.

Thanks again for listening and for all your valuable input.  I've tried to attach a photo for you Maz, hope it works.

Cheers, Wayne

Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.

[Maz]

[user=1894]Wayne[/user] wrote:

I've tried to attach a photo for you Maz, hope it works.

Ach…no photo came thru, Wayne…hey, no worries for now…just enjoy yourselves and have a go when you get home. There is a thread explaining how to post pics, but don't want you to waste precious vacation time with your Helen. 😉

Peace, Maz

[Kim]

Wayne,

I had those collagen bands you described around the tops of both thighs, both knees, upper arms, forehead and neck.  The ones on my legs covered almost my entire upper leg and they are all gone now, save for a few tiny, I mean tiny, remnants.  My fibrosis has always been more muscle fibrosis than skin fibrosis.  I really believe that thinning my blood with Neprinol and sauna to improve circulation made as much difference as the abx, just wish I'd done it from the beginning.

I didn't start seeing results until about four months into treatment.  Once SD has set in very few people see results quicker than that and some take longer, but you do need to be aggressive because it can spread and do damage so quickly.

Take care…..kim

[richie]

Hi–You dont actually see collagen– thats internal   –as you heal the body seems to dissipate the excess  —If you have hardness of the skin and then lesions -I can assume it could scar —the skin hardens due to the tightening of the skin because of the over growth of collagen beneath the skin —the skin then hardens because of this and the lack of circulation –you have to try and stop this nasty cycle early on —Minocin is felt to be very effective in dealing with skin issues –lets not forget the med was invented to treat acne !!!!!!Bear in mind –this is just one small facet of the consequences of SD —The over growth of collagen can affect virtually ALL the connective tissue in the body –this includes all vital organs –tendons –etc .
richie

[Wayne]

Hey Kim,

By the sounds of it I have some very similar bands of collagen and I find it quite disturbing – for eg the ones on your neck restricting you movement when trying to look up. It is good news that your skin can revert back to a normal state when the SD treatment becomes effective. Very good news indeed! Also I'm so blessed, as I have an awesome sauna and I do take Serracor-SK which we import from the US.

My SD treatment is a funny balance in a way – My Dr treating me carefully and waiting for my body systems to come back closer to a normal healthy balance, treating for SD, Lyme and leaky gut, while at the same time wanting to hit the SD with a sledge hammer. My next appointment on May 14th will be a good one as we will be adding something into the mix to whack the SD. Can't wait.

Catch Ya Kim

Wayne

Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.

[Kim]

Sounds great, Wayne.  When I started with the Neprinol/Serrakor NK, I started with a much larger dose than what's on the label.  I'm small, 5 ft, and took between 8-12/day on an empty stomach and now I take 2-4/day for maintenance.  Larger people have had good luck taking 12 or more a day to start.  Good stuff. 😉 

That, combined with your sauna use will help thin your blood, dissolve fibrosis, improve circulation, and help with detox……….how can you not get better??? 😉

Let us know what the “sledgehammer” treatment is at your next appt. :roll-laugh:

Take care…..kim

[Author]

Posts