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[Goodwife]

Hi Aggie,

Sorry did not see your post until now – my hubby's 'case' seems different than a lot of others, in that he did not experience any pain until AFTER  starting AP – not intense pain, but achy tired joint/muscle feelings – when you speak of the walking pain and limbs asleep, I cannot attest to that.  I know at one point, we noticed his forearms were very hard, but they did not hurt – just felt solid.  This was before starting AP, and it would seem to come and go – later, after diagnosis, we realized it was part of SD, but it has not been evident since starting AP 22 months ago – seems like it was a temporary symptom for him.  I wish for all of us that things were more cut and dry – what happens to some doesn't necessarily show up for others!  Good luck – I'm sure you will see great progress, with being able to start AP not long after diagnosis – it is difficult, but try to be patient and the hardest thing about this is the UP AND DOWN feelings you will have – good days, great days, crappy days all over again – we are still experiencing it, almost 2 years into it.  Take care,

[1Aggie]

Thanks for your reply.  Glad to hear your husband is doing better.  I can't really say I have seen much change but I really can't complain.  Thankfully I don't have any of the skin issues (thickening or hardening).  I have to say I feel I have aged by about ten years in one year but shouldn't be vain when there are others out there struggling to make it through the day.  I have continued on with my life like it was.  I do miss the days when I felt like exercising.  That was always a part of my life.  I certainly hope I will begin to feel more like getting back into the routine.  I wondered if I was on the usual dosage of mino for SD and I guess I am so that is also comforting.  Take care and I wish you and your husband the best.

Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.

[Lynne G.SD]

Hi Aggie;
     Welcome to the SD gang.It looks like you have areally good head on your shoulders and I can bet you will get well in short order.Read carefully everything that A Friend sends.This girl knows her stuff…so do I but I rarely have time to get on the board except for a few minutes here and there.You are 70% likely to have Celiac or Celiac syndrome.You can get a test kit at http://www.enterolab.com,send in a fecal sample and they e-mail you the results.Blood tests are not very accurate and a biopsy is a pain in the —.
          Stay farrrrrrr away from L Argenine as it can seriously agravate the situation.Your dizzyness is likely from die-off as millions of teens take mino for acne and don't have the problem.You can lower the dose until you find a comfort spot and then slowly ramp up if you wish.I did best on very low dose mino,clindamycin,zithromax combo.I had to totally avoid many foods and all those that have vitaminD as my D25 to 1,25 was 3 times to high.Gluten avoidance can make you feel much better in a few weeks but takes about 18 months to totally clear from your body so that the villi in the intestine can stand upright again.loss of weight is likely due to mal absorbtion caused by leaky gut.Remember that if your immune system is trying to fight these problems it cannot fight the SD.
     My sister also has Lupus,my mom died of Altzheimer's and my grandmother of Huntingdon's.All of these are TH1 immune diseases.I am in TOTAL remission. Lynne
 

[1Aggie]

Wow, thanks for replying Lynne, that is so encouraging to me to hear you are in total remission, of SS?  How long have you been in remission?  I talked with someone in town who owns one of the health food stores here in Tampa and he cured himself of RA.  That was such a different story to hear than one of gloom and doom that seems to be prevelant in the medical community about SD.  I was told by my primary (who I think is fantastic, that there is nothing to do about this.  The first two tests I asked him to order when I was not feeling right were an ANA and Celiac panel.  He was fine with that although he really thought I had some kind of RLS or movement disorder.  The blood test was completely normal for Celiac while the ANA came back very positive and he stopped there.  Western medicine MDs will often think you have to have Candida in your blood stream before they think there is a problem.  I guess it would be worth it to get tested for food sensitivities.  I have gone to the enterolab website.  I am not sure which test would be the most pertinent for me though and I need to be careful about finances.  I have been through a lot of stessful times since January of 2006 and I truly believe that stress  turned this thing on full force again for me.  I think have tried almost everything at this point but probably not for long enough time frames.  I do know I felt better on a candida diet that was gluten free so maybe that has a factor.  My mother has many food sensitivities that are not diagnosed but she has such troubles that she will literally not eat if she has to travel.  I went off the candida diet because I just wasn't sure it was really necessary to avoid fruit too and it was brutally boring.  Once going off, it was easy to have a piece of dark chocolate now and then etc but I really do have a pretty clean diet.  My Rheumatologist  kind of intimated she did not think I needed to eliminate fruit for candida.  Now it is hard to think of getting back on that regimine after going off for a while but I guess I need to give it longer than two months.  Now if I can just muster up the power to do this again…..  I just find it is hard to come up with variety to eat.  I wonder if anyone knows of any good cookbooks or resources for those wanting to really eat this way.  I  think I forgot what it is like to feel like I want to walk long distances again, exercise and not be in some kind of pain some days.  I need to stop whining though.  Have to be positive and think the best cause I do think that helps.  Need to count all the blessing daily and I am so blessed to find a nice group of people that help when the going gets tough.  I just have felt like I have tried this and then that and do not know really what helps so I feel a little lost as to what I should do sometimes.  My husband suggested a food diary to try and track it and see if there is a pattern.  Maybe I need to.  I am surprised to hear L-arginine is bad. Why?  I definitely heard it is good for arteries to relax them and really important for heart health.   Same for Vitamin D so I have been on large doses of Vitamin D.  On Moducare which is a natural plant sterol and sterolin, on Nattozimes for blood thickening, on a baby aspirin, multivitamin, glucosamine, chrondrotin, DHEA, Vitamin E, Curcumin, Calcium/Magnesium (for muscle cramps that I get pretty bad now), inositol, probiotics, digestive enzymes and B complex.  Were you on the MP so that is why you avoided some supplements and if so, did you take the Benicar?  I  recently went back to that website and it seemed to make sense to me.  Being a health food freak though (obviously) it seems to go against some of what I am used to doing.  I know we are all different but I am like many of us on this board, we are seeking to get to the place you are in.  Praise God you are well, how marvelous is that! I have had to try and come to terms with the fact that I may not be one of those people that goes into total remission and when I think of that, I try to make this something that can be used in my life to help someone else.  Well, I am really longwinded with this one, best go to bed as rest is so important!  Again, thanks for your input!!!

 

Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.

[1Aggie]

I didn't ask you if you are still taking AP?  I would love to someday not be on anything!  Wow would that be a testimony!

Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.

[awesomemb]

Aggie, I have had SD 23 years. Over the years told limited, then systemic and then a mino Dr said limited/crest recently. I started w/ 50mgx2 daily for 2 months and then 75mgx2 daily. I would get dizzy. Now I dont eat 2 hours before or 1 hour after and that seems to work. If I try and take the 100mg I get really fuzzy headed and my vagi starts bothering me. With the 75 I have no yeast problems. I have seen good results so far w/ 75's. I don't take pro-biotics. If I did take the 100mg I think I would have to. I think aches and pains come with the territory. I do not watch my diet other than not eating during 3 hour window. I have also gained almost 10 lbs since I started Mino. I have not been able to gain weight for many years. People say I look healthier. Best regards, MB 🙂

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