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Been a long time since I have been to the board…..where does time go???
I am hoping someone might be able to help me. I have developed a “callous” on my left ear. There is not really a bump or raised place or big sore or anything. This has probably been going on for a couple of years. It is a scaly, very small, sometimes peeling place, but it is pretty tender. When I sleep on that side, I definitely feel it.
Anyone else experienced this? I appreciate any ideas you could give me.
I am also encouraged about the recent posts from patients of Dr. K. I have heard of her and am considering making an appointment. She is about a 7 hour drive away, but I don't think there is anyone closer. I am in south central Oklahoma.
I think I am hesitant because I function fairly well and have been dealing with the disease for 31 years. I read some of the posts and find that so many people get SO SICK after starting abx. It is scary to me.
Thanks for listening and sharing any info you have.
Blessings to all.
GonnaBHealthy
[user=744]gonnaBhealthy[/user] wrote:
I am hoping someone might be able to help me. I have developed a “callous” on my left ear. There is not really a bump or raised place or big sore or anything. This has probably been going on for a couple of years. It is a scaly, very small, sometimes peeling place, but it is pretty tender. When I sleep on that side, I definitely feel it.
Anyone else experienced this? I appreciate any ideas you could give me.
Hi GonnaBhealthy,
Nice to see you again! 😀 There are a couple folk here who come to mind immediately who could probably relate in some way. Parisa, whose hubby has dermatomyositis, and also Eva Holloway, who has it, too, and sees Dr K in Lufkin, TX. I'm sure when they see your post, they'll pop by to have a chat. Or you can PM them if not.
Not everyone herxes when starting AP. Scleroderma folk who don't have an inflammatory component to their disease usually don't notice a herx (I'd add a link to the main site for you that talks about this, but it appears to be down temporarily). If you happen to be a person who does herx, Dr K is a very experienced doctor and would be aware of this possibility, titrating your dose to ensure herxing was more tolerable for you.
Hope someone here has some insight for you, but a visit to a dermatologist or your current doc might be worthwhile just to take a look at your ear. 😉
We included the remission update of Karen N in the Fall eBulletin you might like to read – hope I haven't sent this to you before! If so, just ignore, but if not, you may find her story very uplifting! Just scroll to the bottom of this link:
https://www.roadback.org/EmailBlasts/ebulletin_fall08.html
Peace, Maz
Hi Maz;
You say that SD people don't have inflamation????At the beginning of the disease most of us do have bad swelling just about everywhere.It goes away as we petrify and lose weight.FRIG! the only time I had a great figure was when I was swellen!!![user=31]Lynne G./SD[/user] wrote:
You say that SD people don't have inflamation????At the beginning of the disease most of us do have bad swelling just about everywhere.It goes away as we petrify and lose weight.FRIG! the only time I had a great figure was when I was swellen!!!
Hi Lynne,
No, not saying all sclero folk don't have inflammation! Sorry for the confusion. I can't get into the main site right now, but this link explains what I was referring to:
http://roadback.org/index.cfm?fuseaction=studies.display&display_id=184
Scleroderma patients who participated in the clinical trials with minocycline were started on a twice daily, 100 mg dose. That dose can be adjusted if necessary, and the patient may eventually reach the clinical trial dosage. Scleroderma patients who do not have an overlap of inflammatory rheumatic disease generally do not report a Jarisch Herxheimer reaction of clinical significance. Other supporting therapies may be continued if not contraindicated.”
Peace, Maz
Hi
The reference is actually talking about an overlap disease such as a patient in addition to SD having another inflammatory rheumatic disease such as RA –when the phrase “overlap”- is used -it refers to a second disease being present —a person with pure SD does experience quite a bit of swelling and joint pain –however -this is priimarily due to scleroderma attacking the tendons –medically speaking –scleroderma is classified as a collagen vascular disease while Ra and some others are classified as inflammatory diseases –This sort of leads into my two primary theories –The illnesses are different and the lack of an infectious component in a pure case of scleroderma in most cases –the primary reason IMO for no herx in the majority of SD folks —
richie
Gonnab – Can't help with the whys as the above posts do but I do have little experience with the crusty ears. During the first year, before Dx, I developed the callous like condition you describe on the top and outside edge of both ears. In addition I had two spots just in from the edge of my ear, symetrical in position one on each ear. These were more like an ulcer in nature. Both were very uncomfortable and the ulcer like things the hardest to deal with. I would constantly wake up turn over and then when that side became sore and wake me up turn over again. After I went on AP the crusty part cleared up pretty quickly, I just noticed it was gone at one point. Once in a great while I will still get a small spot on the outside but that maybe a result of lots of years in the sun. The ulcer things would scab over and then the scab would come off and below would be a hole that was quite deep. In time the hole became smaller and less deep and eventually healed. That was around eight months into AP. Don't misundersatnd the healing began within weeks of beginng AP but it took eight months for the ulcers to completely heal. Now I just have two red spots of scar tissue there and no reccurance. As with many of my SD symptoms nothing seemed to help before I went on AP and then things began to stop progressing and next to start healing or resolving.
Again I sure do hear you about the sleep issue, I was never able to sleep on my back. In additon to the crushing fatigue during the day not being able to sleep at night was terrible.
Gonnab – Also I did not get sick after starting mino. I did have an increase in joint pain in my legs and hips but I don't know if that was due to the SD or the mino or a combination of the two. felt so terrible before with just the SD that any change or pain I experienced after was just “different”. I was also very anemic the first few months of AP due to GAVE so I believe that some of the leg pain was due to the anemia. The GAVE has also resolved and my recent blood work showed my hemoglobin to be normal. It had been hovering slightly below normal for two years, but at a level nearly twice what it had been around the DX of GAVE.
What's with the ears? I've had that too, but mostly better now, except mine feels like the cartilage is broken and would be painful to just use a phone. Very strange.
kim
I'm thinking that the ear issues are linked to circulation. Similar to digital ulcers perhaps. My digital ulcers began to clear up within three weeks of starting mino. I would guess the crusty ears began to clear up about the same time. I had so many other SD issues at the time that I did not notice the crusty ears. As I noted the ear ulcers took quite a while to toally heal but they did begin to get smaller not too long into AP.
Right around the time I was told I had SD for sure, I had to stop wearing my pierced earrings as the lobe would swell, become sore and weepy. Just a few weeks after that, I developed calcinosis on the cartilage of both ears just above my lobes. They were quite tender (phone contact made them sore) and a few times each week, something akin to a large grain of sand would fall off. This happened for around 2 years, then the “grains of sand” stopped coming, but the “callous” is still there. However, just last month, the top part of my ear cartilage developed calcinosis, but just on the right side, and the area darkened. The docs said there is good circulation, and it is warm, so it's just a new area of calcinosis. Lucky for me, it's not “painful”, just tender.
Maybe your ear issues are calcinosis related?
p.s. Still can't wear earrings! Gold, platinum, cheap, etc.
Hi
One of the characteristics of Raynauds is that the most circulation is utilized for vitals and the core —circulation is cut down to the extremities –my guess would be reduced circulation in the outer ears —
richie
Thanks for the encouragement Maz. I know I need to just take that step and make an appt w/ Dr K and get on the road to healing.
Maybe I can come across the 2 ladies you spoke of and they can tell me more about Dr. K.
I will reference the link you sent.
Thanks
Ooooppps, another reply here. Thanks to all of you for answering my concerns. To JeffN and Mary P, thanks for letting me know of your experience. Perhaps the ear thing is just about Raynauds. It don't really have an ulcer just a rough, peeling place.
Maybe we can invent some kind of soft circular ear pad, kinda' like a corn pad, with a hole in the middle for our ear “owie”. We could patent it…..market it……sell a ton of them…….wait, I may be letting my brain run away with me.
Again thanks for the encouragement. I will hope that I would be one that does not have bad herxing and life is not thrown off track. I do have a Dr that is pushing me in the direction of the Marshall Protocol, but that sounds too drastic for me. I know some on this site are doing that treatment. This particular Dr does not know much about the Abx Protocol, but does NOT agree w/ the IV treatment. I think he is studying up a little more on Abx. He is atleast interested and learning.
Is there a place on the website to print out the Dr.'s Protocol sheet? I will research that out. I plan to see my family Dr in a week and I would like to have something to take her to see if she would work w/ Dr. K and be my local Dr.
Blessings
O.K. Girls;
Now that you have explained this subject a bit better I understand what you are talking about.I had the same problem,I think.I just had a tiny blister the size of a pin head on the cartilage of both ears and it would always happen on BOTH ears and a couple of spots on my back.Doc told me that it was due to celiacTwo months off gluten and they went away.If I cheat and have a piece of cake or a hamburger it comes back about a week later.Needless to say,I don't cheat much anymore
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