Jelretiedmama’s SD Journey

[jelretiredmama]

Am finally posting my journey with SD. Although I had some symptoms (Raynauds) as far back as 1990, my official diagnosis was in Jan 2012. However, I believe my problems really began in June 2002 when I developed a lesion or some kind of an infection on my chest. Am copying and pasting my summary thus far in point form instead of rewriting.
1990 September, first episode of Raynauds. Note: this following my father

[jelretiredmama]

Well the Igenex Test Kit arrived a couple of days after my last doctor’s appt so was unable to take it with me at the time. However, I go back to see him next Tuesday to get some results of the most recent tests including thyroid, ferritin as well as the lyme test thru a Cdn lab. I am curious! I will be taking the Igenex test kit with me though so that we can get the tests requisitioned, done and sent especially if my Cdn lyme test shows negative.

Also had the appt with the Hand specialist earlier this week. In some ways a little disappointing as he did indicate that there definitely is risk associated with removing the calcinosis, but I am still of the mind to have it done (kind of scared me to almost decding against). We will try one finger at a time to see how it goes. The biofilm / calcinosis of my right thumb has become extremely hard so he might not be able to remove all of it because it would be skin on top of bone at the tip. But there are other nodules he can remove on that thumb. Don’t know when the surgery will be — could be several months yet.

Experienced what I thought was an interesting detox the other night in bed. It wasn’t like a fever nor a hot flash (that ship sailed sometime ago), but I was definitely perspiring similar to what one might expect in a fever, yet I felt normal.

Still find it amazing at how the disease / herxing migrates throughout the body. Scary to think of how much involvement there is.

Will update again after my doctor’s appt next week.

[jelretiredmama]

Here we are again. My appt last week ended up being cancelled. My doctor had to close his office unexpctedly – I don’t know why and didn’t feel I should ask in case it was a family emergency. Finally got in to see him this past Thursday (Feb 21st) and got my results. Lyme test thru the provincial lab was negative. I didn’t take the Igenex kit with me because it was a Thursday and they will only take samples drawn on a Monday, Tuesday, Wednesday so will save for the next visit or else inquire with my ND. My hypothyroidism had improved slightly to 9.48 from 9.90. Both T4’s and T3’s are considered in the acceptable range so not sure why the TSH is struggling but I have a theory. Still attempting to regulate with natural supplements as opposed to synthroid which didn’t agree with me. My ferritin is now up to 62 – the best it has been in over a year but I still need to get it up higher to a least 70 or 80. And now for the strep test which I had neglected to have done at the outset of going on AP. Interestingly, I found that I tested positive for strep — which makes a whole lot of sense since I remember back when I first developed the lesions on my chest in 2002, that I developed a chronic dry cough. It did go away when I had the bigger lesion removed but came back on and off and more consistenly in 2011 after some family members passed away. Can’t help but wonder if I am a carrier and due to trauma / stress, my immune system failed somewhat and allowed it to start getting the better of me and thus the SD, hypothyroidism, stiff neck, etc. I hope I don’t have meningitis. My head has felt too heavy for my neck for a few years (can’t remember when I first noticed it), but last fall, my neck become much stiffer and I felt a tingling sensation — very scary. Told both my family doctor and rheumy but I think they both think it is scleroderma. I wonder if it is related to the strep. Anyway, am now on penicillin V for 10 days. Will see how that works. I also think I have the rheumatic fever rash (pink circles in my skin on my trunk where the morphea was plus on my chest). Maybe that will go away with the penicillin.

Another interesting fact – got together with cousins last weekend and compared health issues – current and with past family members. Am wondering if we are carriers of strep and mycoplasma and when triggered we develop these diseases — fibromyalgia, hypothyroid, ALS, SD, etc. An aunt who passed away at 88 last year of ALS (unusual at that age) had scarlet fever twice in her life. Just trying to connect dots.

Anyway, will carry on and see what happens. I keep thinking in some ways I am quite healthy compared to others and in other ways, I know I am teetoring(?) on the brink. Will persevere. Thank God for the Roadback foundation.

[jelretiredmama]

Saw my Naturopath this week (Feb 26th) and updated her on all issues. She suggested I might want to try a natural thyroid med instead of the synthroid, but since it still requires a prescription, I must see my family doctor this coming week. She is suggesting 30mg. She also gave me some immune support supplements.

Hopefully that will help as I have been struggling the past few weeks probably from my underactive thyroid plus the herxing from the penicilin for the strep. Last Sunday, my middle finger (the one we the calcinosis) was really aching but more like a sprain which was different. My chest has been prickling and pulling as well where the lesions / keloids were. Also noticed some prickling all over at night. Suspect this might be from the pencillin attacking the strep and other stuff dying off (I hope). Or maybe the penicllin is making the lyme come out of hiding, but then I don’t know yet if I have lyme. Will check with Igenex to see if now is a good time to test or if I should wait a wihle after taking the penicllin (tks Maz for the suggestion).

[jelretiredmama]

Finished penicillin about 10 days ago. When I went to see my family doctor a week and half ago, I mentioned that my body actually felt calmer. Well I spoke too soon. Within the past 10 days, my body started to react again — this time with real strep symptoms – sore throat, swollen glands and yes the stiff neck was back. Also had muscle weakness and some strange tingling. Am back on another round of penicillin — hopefully this will knock out all the strep. I wonder if anybody else knows how long it might take to kill strep.

Am confused too about taking penicllin and tetracycline. Seems pharmacists don’t think it would be a problem, yet Dr. Brown say to take tetracyclines away from penicillin. On my sheet that comes with the penicllin, it says DO NOT TAKE if taking tetracylines.

Started on 30 mg of the dessicated thryoid just over a week ago. I seem to be tolerating it ok. Not sure yet if it is helping any.

Still haven’t completed the Igenex Lyme testing. Got the requisition filled out by my family doctor and went to the lab in his building. They were puzzled so referred me to their main lab but said to call first. They said they would call me back — still haven’t heard back despite tracing them. Might try another lab or just pop in next week.

[jelretiredmama]

Been awhile so a few things to catch up on. Penicllin seemed to awaken a monster. Symptoms of strep throat appeared as well as swollen glands etc but subsided after treatment. Began again within a week. Back on another round of Penicllin VK.

Finally did the lyme test and sent the samples to Igenex. Also did a redo on my TSH and ASOT. Follow up apt on April 19th with my doc for results. IGG Postiive: ind on bands 23-25 and 34. Positive on bands 31 and 39 with a strong positive on 41. IGM negative but positive on band 18 and 41, plus ind on 39 and 83-93. TSH down to 3.15 (good). ASOT still showing antibody detected with a titre of 200 iu/ml.

Referred to an infectious disease specialist. States that CDC lyme testing is of a gold standard and that I don’t have lyme, but agreed to put me on doxy 100 mg twice daily for 4 weeks.

Throat, glands and stick neck continue to plague me, flaring up over the weekend. Went to the Walk in clinic on Monday a.m. Given 5 days worth of azithromycin. Symptoms starting to ease up.

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