Scleroderma Shrinking Mouth and AP Effects

[notabene]

Using the search engine, I can only find snatches of discussion about this topic. So, this post.

I’m curious to know the experience of other SDers taking antibiotics. Does your mouth stop shrinking or, hopefully, revert to normal? Do teeth fall back into their original position? Do thinning lips stay as they are, or do they become normal again? Do the vertical lines above the lip become less noticeable. Does the progression of a string bag mouth stop? How much have exercises helped? How long does it take?

One ‘sister in scleroderma’ told me that her mouth returned to normal and her teeth fell back into place. Another told me that she had a retainer made.

I’m less concerned cosmetically, but a smaller mouth makes it more complicated to eat, brush teeth or have dental work done.

If things progress back toward the original, how does science explain it. Maz?

Thanks in advance for all your insight.

Nancy

[cavalier]

Nancy Hi – has your mouth area held since doing AP or have you noticed any changes?

Funny your posting this as I have noticed my mouth area is getting worse one of the symptoms that has gotten worse despite AP. I am concerned over this have lines north & south above my lips and on the chin – it is not age they came on suddenly in the last month and are advancing so it would be interesting to know how others have responded. My lips the bottom one has lines as well as the sides at the corners of the mouth down. My front gums are struggling I get my teeth cleaned very 4 months now. Am not good at describing well.

My skin has also gotten drier despite topicals.
Assuming I am in a flare based on this & other areas.

Best – Jill SD, Lyme & Bartonella

[richie]

Hi–over time the mouth can return to normal -both in size and opening –it is very important that you excercise your mouth !!!!! this will definitely help the process of returning to normal –I got these years ago from Mayo Clinics site —#1 Open your mouth as wide as possible –hold for 10 seconds in open position –do this for 10 reps once a day –# 2 open and close mouth rapidly 20 times for 10 reps -again once a day –AS the skin loosens on your face this will become easier and easier —at that point double the reps —it helps !!!!!!!!!!!!!!!!!!!
richie

[richie]

To Jill —
Lines are great –when the skin is tight on your face due to scleroderma -there are no lines at all –just shiny skin –lines are good -we want lines –shows skin is loosening !!!
richie

[Lynne G.SD]

Hi Nancy;
I got my mouth back to normal opening after 3-4 years but I do have lines that only happened after the tightening left.Tooth problems did not improve but that may also be due to osteoporosis that just refuses to stop.I exercise like the dickens all day stretching for or lugging heavy plants around in the greenhouse.From Sept to the end of april I load the boiler with logs my size and weight every 4 hours.I out run,out wrestle,out work my 40 something girls but the osteostill progressed.I take cal and mag to no avail.So I give up and just live with it.
Like Richie says,exercise.There are many sites that give facial exercises if you google but I admit I forget all about them until I look at my reflexion in the mirror hehehe

[Maz]

@notabene wrote:

If things progress back toward the original, how does science explain it. Maz?

Hi Nancy,

I think the best answers you’re going to get are from SD sufferers who have successfully reversed their disease process with abx therapy. As to the science, SD causes collagen build-up throughout the body, as collagen is a major building block of all tissues. Minocycline (or any tetracycline) has properties that block collagenase in the body, the enzyme that destroys healthy collagen-rich tissues. It also has angiogenesis props, which means it encourages the growth of new blood vessel formation (something that the SD disease process destroys). The latter is probably one of the reasons why hyperbaric oxygen therapy (HBOT) is so helpful to SDers along with minocycline therapy. I would think that because minocycline cleaves to iron-rich RBCs that carry oxygen, the HBOT increases oxygen in blood plasma and pushes it (and minocycline) deeper into the tissues, speeding up recovery times. Jill has been through this process and perhaps can elucidate much more as she’s done such a lot of research on this.

How well people recover and how long it takes is going to be a really individual thing and probably dependent on age, hormones, strength of immune function, toxic exposures and ability to detox, diet, disease severity, whether pathogen load is being appropriately targeted with the right abx, etc.

Maybe one of the most difficult challenges with regards to having trials with rheumatic patients is that each patient has such unique variables influencing their disease and scientific studies tend to be for fixed periods of time (say 6 months or a year, which really doesn’t provide much info on longterm outcomes). While some folks may do really well, very swiftly only taking minocycline, others have to wait longer to see any improvements to slow that SD freight train down and may need combination oral abx and/or IVs. Others still need a multi-pronged approach to getting well, including diet, detox, supps, physical therapy exercises, adjunctive therapies, etc.

In other words, if minocycline alone isn’t producing the results one expects, then there are many other avenues to pursue to boost the monotherapy. I have heard many times here on the forum that hand contractures are probably the hardest thing to reverse with SD, but there have also been severe cases where hand contractures eventually did reverse for APers.

Bottom line is that “the science” is still thin on the ground as to why some folks get better before others and are able to reverse some aspects of their disease while others have more of a struggle. It all comes back to our unique make-up and root causes, I reckon….hardly scientific, but if you get a chance to read Dr. Harold Clark’s book, “Why Arthritis?” you’ll find he discusses all the many possible causes and why it is just so hard to scientifically explain all the variations in rheumatic diseases and unique responses to abx therapy.

Not sure if that helps at all, Nancy, or if that might be what you meant?

[kater]

It is my one year since I was diagnosed with SD, and 10 months on AP (3 antibiotics). I just got my menopausal neck back and I admit to being thrilled. I laugh everytime I see an ad for collagen injections and skin tightening services–I mean do people really know what they are asking for? 😆 Anyway, I am close to being my old self–other than collagen in my palms, raynauds, a few roving aches and pains and some fatigue. I am having my cd57 redone soon so will see how that looks. Such a long way back in 10 months and I couldn’t be happier! Thanks everyone
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[notabene]

Great responses – thanks.

Jill – My mouth hasn’t shrunk since I started AP ten months ago. I hope that it will gradually expand back to its original size.

Richie – Thanks so much for the mouth exercises!!! – I’ve started them already. Before, I only had exercises for the lips, cheeks, hands and arms. These are all useful, but I wanted to home in on the mouth, since it affects eating and dental work.

Lynne – It’s good to know that you returned to normal in 3-4 years, especially since you had galloping scleroderma as I recall. Mine is a relative mild case, caught early, and AP within months of diagnosis. I hope to see good news in the next year, but I am willing to wait, if need be.

Kate – I teased my doctor about getting back my “age-appropriate wrinkles” – love them better than the alternative.

Maz – So much useful information, as always. But help me puzzle through one part: @Maz wrote:

Minocycline (or any tetracycline) has properties that block collagenase in the body, the enzyme that destroys healthy collagen-rich tissues. It also has angiogenesis props, which means it encourages the growth of new blood vessel formation (something that the SD disease process destroys).

You have vastly greater knowledge about these phenomena, but what I read suggests that collagenase is beneficial.

“Results suggest that decreased collagenase expression is a characteristic of systemic sclerosis fibroblasts, and both increased collagen expression and decreased collagenase expression in systemic sclerosis fibroblasts may result in the excessive accumulation of collagen in patients with systemic sclerosis.” http://www.uptodate.com/contents/pathogenesis-of-systemic-sclerosis-scleroderma/abstract/121 and http://www.nature.com/jid/journal/v103/n3/abs/5611140a.html

and “These studies indicate that the major defect responsible for the hidebound skin lesions of scleroderma may be decreased collagenase activity.” http://www.ncbi.nlm.nih.gov/pmc/articles/PMC301981/

If collagenase are enzymes that break the peptide bonds in collagen, then we SDers would want more of them, or would want them to be highly functional. We presumably don’t need more healthy collagen-rich tissue, or do we? The angiogenesis properties makes good sense, since we need to fight our Raynauds and keep the blood vessels clear for flushing out the toxins.

These research findings would suggest that SDers would not want the tetracyclines to block the actions of collagenase.

I’m sure there is more to it

[Maz]

Hi Nancy,

I think the key to minocycline’s effectiveness for SD in terms of its immune-modulating effects lies in its ability to inhibit MMPs (matrix-metalloprotinases).

Even though the ACR is less than complimentary about Dr. T’s trials, even they admit this about minocycline in the final line of this article:

http://www.rheumatology.org/publications/hotline/archive/0598scleroderma.asp

“As with many other tetracycline derivatives, minocycline has been documented to have many other pharmacologic properties, including inhibition of matrix metalloproteases.”

You’ll find lots of info online about MMPs and minocycline that explains the science of how all this works. Here is a Wiki article that goes into some depth, much of which is above my head, but tetracyclines and their effects on MMPs are described lower down:

http://en.wikipedia.org/wiki/Matrix_metalloproteinase

“Doxycycline, at subantimicrobial doses, inhibits MMP activity, and has been used in various experimental systems for this purpose, such as for recalcitrant recurrent corneal erosions. It is used clinically for the treatment of periodontal disease and is the only MMP inhibitor that is widely available clinically. It is sold under the trade name Periostat by the company CollaGenex. Minocycline, another tetracycline antibiotic, has also been shown to inhibit MMP activity.”

It was actually dentists who discovered this amazing property in the tetracyclines.

Of course, there is always the infectious theory, described by Cantwell, a dermatologist, in the following article on the main website… and that once offending pathogens are successfully targeted and the pathogen load lowered, their effects are diminished in SD:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/102.html

I wish I could offer more insight just now, Nancy, but my time on the forum has been limited lately due to a medical crisis with an extended family member. We’ve also been working very hard on a survey to gather some preliminary data, which will soon be uploaded to the main site for SD patients.

Research on mino for SD is so sparse that much of why we think it works for SD is speculation, based on minocycline’s immune-modulatory props. However, with the increasing numbers of SDers who also seem to have concomitant Lyme, this is an infection connection that just can’t be ignored and may spur interest in physician-researches who are looking for causes for SD. 🙂 This is the hope, anyway.

[cavalier]

To all who have replied & others –

The confusion for me is this –
I had seen in doing some reading recently some pic’s taken by doc’s who posted pic’s of a SD patients face as I wanted to see specifically if what I am seeing recently in changes IF this is due to SD or not. In more than one site they notate the north south lines above the upper lips & the chin as being attributable to the disease & is a hallmark of anyone who has Systemic SD. I collected a few pic’s in my drafts not sure how if I can upload any pic’s here. So according to their info these lines appearing is not good but hallmarks of the skin aging due to vascular impairments collagen not being good etc. So yes IF i was sure this was good in that my skin is relaxing or abatement i would be OK with that BUT their info(Rheum’s) which of course in itself is ltd. info in some cases – has me wondering is this merely advancement or abatement as most here are saying?

Ritchie – I appreciate the info – yes i do the mouth excerises as in the hands too dont use it – for sure will loose it is my theory – but it is still a battle but when I do this I get cracks in my left side of my mouth where the upper & lower lip meet in the skin immed. by the lips it bleeds & hurts. My skin has gotten despite O3’s drier recently.

When I did HBOT for 34 dives along with AP to help things along – my skin got better but I am still making antibodies so as Dr S. told me it would help but that eventually after i stopped things would reverse again as the pathology is still ongoing if you will if i am expressing that right in that I am still making antibodies. I was in a chamber for 1hr & 1/2 to 2 hr’s a day plus 3 hr’s of driving so it was not without a cost in time for me to do this – as i had to travel to get to one.
Dr S. said I would not be able to hold onto the progress – I have lost the smoothness to my feet in the skin & gotten the thickened skin back & raynauds back to them like i never went in. My hands since LDN have gotten a little better – which is good in not being as thickened and I have held onto the inflammation being down to a degree since HBOT in seeing my wrist bones again but not as good as it was during HBOT- all of this is a bit confusing to make heads or tails out of – especially since I have no doc’s here who know much about SD – one rheum told me frankly I know more than she does – that is not good. My circulation was greatly helped by HBOT but that too is gone now & my arms & feet are worse than ever & I still am on AP in them being numb & asleep the legs get painful. Did HBOT help my circulation DEFINITELY but it also showed me unless I can continue & SD is a longer process of which they dont know how many more it would take but Dr S. saying it cant hold & the more i thought on this til my immune can take over better & i can get a method to reduce or stop the antibodies I just felt this was good but not a perm. solution perhaps not that there is one other than wiping out the antibodies with a clean slate but risks to that too.

This thread is about Nancy’s question, but if you go back to above mention, the pic’s of people who display faces like mine they call it mouseface or mousehead – the cheeks loose muscle & the chin changes even gets different looking & the patterns of the mouth & chin for wrinkles is exactly the same as mine now is some are just worse than others in this process but they say this is not good & is hallmark for the disease activity. I have lost more muscle mass in the face of course the skin has been like paper, i look far older than i did at the beg. of this year even, so i am not sure this is all good.
Since she mentioned the wrinkles i thought this is my question – of course the mouth opening ability is no worse than it was a year ago it seems to sometimes be worse than others & for that AP I have to hope is why and the mouth opening i do – but to suddenly age is this the face now able to wrinkle finally or advancements as these doc’s say in the disease progression? And this is in conjunction to Nancy’s question about wrinkles. Confusing as the 2 bits of info are in direct conflict & i dont know what to make of it.

Tx – Jill SD & Lyme Bartonella

[notabene]

Maz and Jill – Interesting new information to digest, but it’s late here. Tomorrow, more research.

All the best – Nancy

[cavalier]

Various degrees for faces on the net for this but here is one example – while I may not have them quite as deeply they are there suddenly none the less above & below the mouth – the confusion is while some here say this is good – the Rheum’s who notate these pic’s say this is typical of the disease manifestation. Obviously which it is makes a big difference as to being good or bad -in regard to the disease progression or not-

http://www.dermnet.com/images/Scleroderma/picture/14531

Best – Jill SD, Lyme & Bartonella

[Debbie star]

Hi Jill, yes i have been confused with this same issue… I went to see my gyno last year and he said..”you should have more wrinkles on your face for your age and then he pointed out my mouth (and how that was significant of scleroderma). I freaked out as those lines just appeared one day and i thought it was older age coming along… I have similar to that pic, but i have also noticed that i have whiteness around my lips too (like not enough circulation)

The dentist also commented on my small (bird mouth)lol.. I just thought it was always like that (i do have a narrow mouth)

I was seeing a guy who was into chinese medicine and he said that there are other reasons that that occurs! (i dont know if he knew about scleroderma)..One of the reasons was of course hormones (then i was confused again)…
But i do know that hormones seem to have a lot to do with maybe an onset of autoimmune diseases???
I did find a really good article on that

When they talk about it i know scleroderma is one of them, they say that more women get it than men..

I know ALL my levels are low dhea,test,oest,prog,
so i have wondered about whether getting these more into balance would help overall???

the dr has me on 10mg of dhea (as he said he wanted to prepare my body to do the AP, as it may not work if my body is not ready) re dhea, let us know if you find anything more out about it??
would love to know

Debbie

[Debbie star]

Hi Jill and everyone, dont know whether you have seen this article?? its about EFT
and scleroderma (really worth checking out)

This lady may be able to tell us re the Scleroderma Shrinking Mouth and whether when she recovered her mouth went back to normal

There are some pics here,(before and after) but not real close;

http://www.wholistichealingresearch.com/92schweikart.html

Debbie

[cavalier]

Hi Debbie – am familar with EFT – it is simple to do & it is good for circulation – there is more to EFT than just the emotional – it is felt these are important accupressure points that do indeed help the circulation. The body mind & spirit are connected – have read that SD is a emotional thing often from a trauma in early childhood that we may not even remember if we have blocked it. I dont know what to think on that – certianly there can be overlapping areas – bacterias, toxins, emotional.
i do know I tend to put others 1st me often last.

The suddent change to my mouth is classic the way these women look and I are not coincidental for sure. Ironically I had to keep from laughing as her story albeit not funny reads somewhat like mine not the breast implants though. 😀 But in what she has tried. I think the key for each person can vary – medicine is not a one size fits all in which AP we respond too etc and possibly due to which bacteria is involved …

For me minocycline didn’t work as well I am currently on Doxy which oddly in the same class I respond better too – again what works for me may not for someone else it is mino but then again i have a positive Lyme so maybe it is due to that and the Sd is 2ndary much we know much we still dont know fully. For me Doxy came from trialing to see and I am on Rifampin.

I do know my mouth area that tell tale pattern which i was surprised to see is common to others who have systemic SD is not age & the thinning of my cheeks is also sudden.
Also am currently not able to stand for long without getting dizzy – so it was odd to read of that as well. HBOT did help my walking ablity in my legs not feeling as heavy – circulation but even though still on AP I am having some increasing symptoms like arms & feet falling asleep. The fatigue is def. there & I often feel like I have the flu.
Have often felt just take a good relaxing vacation which i never do is good for the soul. Yet people do get better with AP and some by stem cells some may have gone into remission anyways as I did go into remission after a couple of years when I 1st got SD, but when I had my 2nd surgery after many stressful other things it came back this time much worse.

So I remain not convinced that the wrinkles are good judging by the docs, the dentist noted some extra collagen in my mouth he felt was due to SD changes too. I do believe they will remit once i can get better control – new symptoms continue still … so it stands to reason. i noticed the pic taken with my bro just in March of this year – when i was in Ia. for Dr S. he came down from Mn., I had none of that then – my cheeks were more evident I had more muscle & my face was wider. I think it is important to take stock of what is going on.
Tx for the link to her story. Sorry to ramble – Jill SD. lyme & bartonella

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