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Yeah!!! As I'm sure you read, I'm going to see Dr. S in one month. I cannot wait. I only wish it was tomorrow 🙂 I had the pleasure to speak with him and he even said I could get pregnant while on Minocin and then go off of it. I am excited and scared and just can't wait to be doing something. I am not the type of person who sits around and waits for things to happen as suggested by all the other sclero doctors.
I read thru a post by JBJBJB describing her visit to him a while ago, so that helped me prepare and then also sjess was just there, so I read her update. But as usual, I have a bajillion more questions.
1. I have an appointment with my PCP who found the ANA's-she's a resident, so I'm hoping that she will be open to working with Dr. S if he needs any local help. I want to ask her for a prescription for Minocin (I want to do something NOW), but should I wait until April in case it affects any testing he wants to do? I read something from Dr. F asking his patients to wait for treatment so that it doesn't affect the tests he runs.
2. As I understand it these are some of the things I'm looking at:
-mycoplasma infection
-lyme
–c. pneumoniae
-ASO titer
-low vitamin D
Should I try to have any of this testing done before I go? I am considering doing the Lyme testing, but I have no idea how much it is. I am going to have to pay out of pocket for a lot of items, so I just want to prioritize them. Has anyone with SD tested negative for mycoplasma? If SD is infectious, then I would have to right? I know I'm putting the cart before the horse, but I have to dissect everything to get to the bottom of things. I have to know the WHY or I can't rest!3. I have been tested for the following:
Beta2 Glycoprotein I AB (IGG) <20
(IGM) <10
(IGA) <10
Phospholipid AB IGM, IGG <4.0
Thyrog AB Screen <1.8
These are all negative values. I was tested for these back in August due to the miscarriage, before my ANA came back positive this February. Are these related to the SD? I have read they are other indicators of autoimmune disease, but maybe they were negative then and would be positive now? I remember reading one of Maz's posts about bloodwork only being a representation of one moment in time, but I'm not sure why they were not positive then as I feel the same as I did when my ANA's were high (I feel fine). I remember reading about IGG and IGM in some of the Lyme literature and am worried that I will test negative for Lyme (which will be a good thing of course, but if I have it-it would explain the sclero).
3. The ASO test-I have had lots of step in my life and I still have a swollen tonsil on the left side. All the doctors say something about it and then ignore it. I have always thought that was odd. I'm no doctor, but I don't think it's normal. Maybe some type of lingering infection?!?! I have read that strep can lead to SD, but I'm not sure if it is an accepted cause. Should I ask Dr. S about this?I am so glad I posted here on roadback. It has been my light at the end of the tunnel. I spend way too much time researching of the great information you all have to give one another and am lucky to have found such a supportive group.
~jen
PS…Thru everyone's suggestions, I considered gluten free and have been for 2 weeks. I cheated last night with some pizza and this morning my hands were so sore! Maybe I'm not exactly gluten intolerant, but I don't need any test to confirm it-I'm staying gluten-free!!!
Hey Jen…. I really don't know about SD… I just wanted to chime in here and say that the gluten-free diet has made me already feel better…since starting it last Monday… In terms of my digestive issues anyway. I also think it made me retain fluid which didn't help my joints. I think avoiding gluten is a good thing… I've been reading about how celiacs lose vitamin D and calcium in the stools ….their bodies can't absorb it while they are still eating gluten….both my vitamin D and calcium levels were low.
I also wanna say that I wish you luck and it sounds like you are on the right path! I understand about waiting….its so hard to wait! I was like you and researched everything online and came here and asked questions 🙂 I still ask questions 🙂 I can't wait to hear how things go at your appointment 🙂
Jen,
Hi! I'm interested in knowing if you've already had a Vitamin D test. If you have, did you have the 25 (OH) D? And, if you did, do you mind sharing your score?
For the record, my first AP physician was Dr. S. There were no well known ones with experience in my area. But, now there is one about 2 hours away, and a great one.
I just had an annual checkup with my AP physician last week; and as part of a Metabolic Panel, my 25 (OH) D test was done, and the result was a real eyeopener. So glad my AP physician was so thorough. I needed to know this information.Will share my own info/update with you and others when I have more time to post.
:dude: Best to you,
AF
Jen,
Good for you! So happy to hear that you have an appointment scheduled with Dr. S. As far as needing to be off abx before you get tested, I think that info on Dr. F's website is old, as I thought the same thing before I went to him, and his staff told me that because I had SD, it wasn't necessary for me to stop taking my meds, as the benefits of being on Minocin were too great for me to stop it. I was on Minocin for 2 weeks before I went to get my 1st round of iv's with Dr. S. He did a very specific mycoplasma typing test, and I came back positive for 2 strains. (it did take 7 months for the test to come back) The only positive test I've ever had (and still only have) is a high ANA titre. I have 1:80, and when Dr. F does the specific pattern/typing ANA test, I've been at 1:320 at my highest, and the last one I had done was 1:160, speckled, nucleolar. From what I understand, just because I'm seronegative on all other tests, it doesn't mean I don't have SD. All it means is that I'm seronegative. The very first rheumy I saw said to me that she's seen plenty of seronegative RA patients with raging RA. If the blood doesn't show it, a clinical diagnosis is sufficient enough, in the absence of blood evidence.
As far as what tests you can have done ahead of time, you certainly can have any test done in advance. You really should ask Dr. S what blood tests he's going to do because I know he draws a bunch of blood there, and includes it in his fees. (no sense on spending money twice for the same tests) I know he does the mycoplasma tests, as well as strep titre, and inflammation markers. I don't recall a vitamin D test, or a C.Pneumoniae test. The Beta 2 glycoprotein test detects antiphospholipid syndrome, which is an autoimmune disorder characterized by blood clots and pregnancy losses, as well as thrombosis (blood clots) in patients with SLE (systemic lupus erythematosus). Phospholipid AB test is also a lupus anticoagulant test, and Thyroglobulin AB screen is a thyroid test. (specifically looking for a thyroid disorder) None of these tests are specific to SD but, they are usually part of a larger autoimmune screening panel that either a rheumy or other doctor suspecting autoimmunity will do. At first, I was all caught up in the results of the blood tests, and what they all meant/didn't mean. What I've found over time is that I may never find the “exact cause” of what made me sick, or that “Aha!! that's it” moment. I believe it was a compilation of many things happening at once, and all I care about now is how I'm feeling day to day. It was SO frustrating, trying to convince all the doctors how sick I was for over a year, and having NOTHING show up in my blood at all, not even an elevated ANA. I prayed for anything to show up but, it didn't.
As far as the Lyme test goes, I would get the Igenex test done. I had the standard antibody and Western Blot done by Quest labs, and tested negative on both of them, but positive on the Igenex test. And, again, you could test negative on the test, and still have clinical manifestations that may warrant being seen by an LLMD.
My ASO test is fine but, my EBV (epstein barr virus) titre was really high. I was told that all it meant was that I'd been “exposed” to the virus but, I knew better. I also had 1 positive band (a significant one) on the Quest Western Blot, and this, along with good advice from the board, made me curious enough to order the Igenex test. I think it's a good idea to discuss your high strep titre with Dr. S.
I can definitely tell when I eat something that doesn't agree with me. I call my hands my barometer because they swell instantly when I react to something.
Sorry for the long-winded email, just wanted to address all of your questions.
Take Care,
Maria:)
Jen,
I really cant answer any of your questions or add anything to what anyone else said, I just wanted to say GREAT NEWS about going to see Dr. S!!!!! I couldnt be happier for you!
Oh… and about being Gluten free, then eating pizza and having a reaction… do what feels right! if Gluten free is something you want to do, DO IT! you dont need a definitive test… do what works for you.
I cant wait to read about your visit w/ Dr. S!
Connie >^..^<
Hi Jen,
I'm so glad you're going to see Dr. S. That's great news. I have never read that before about strep and SD. I will have to “google” that. I do have a high strep titre which has been coming down with zithromax. Best of luck with your appointment!
[user=2168]PetRescue[/user] wrote:
PS…Thru everyone's suggestions, I considered gluten free and have been for 2 weeks. I cheated last night with some pizza and this morning my hands were so sore! Maybe I'm not exactly gluten intolerant, but I don't need any test to confirm it-I'm staying gluten-free!!!
Hi Jen,
Pizza is a “triple whammy,” since it contains not only wheat (gluten), but also cheese (dairy), and tomato sauce (nightshade vegetable).
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinPeach-thanks for the hope. I am very much looking forward to seeing Dr.S. He will be able to clarify so much information for me.
AF-I have not had the Vitamin D test yet. I have an appt friday with my PCP to see if she will work with Dr.S and is open to the idea of AP. I am hoping to go to her with the “what can it hurt” approach. Maybe I will eventually make her a believer. I will update you with my results if she agrees to test me.
Maria-thanks so much for all the insight. It tends to get a little overwhelming. I hate to burden Dr.S anymore as I'm sure he is busy with patient's worse than me. And he's retired! I'm a little worried who I'm going to see after he “officially” retires. I will have to see what tests my PCP will run. I called Igenex, but the Lyme test is over $600. Unfortunately that is not in my budget-at least not now. Maybe I can have the bad Quest one run just in case it's positive. I doubt it, but who knows. The weird thing is I don't have any symptoms of Lyme, but I talked to Cheryl the other day (thanks Cheryl!) and she said 100% of SD people here were positive for Lyme. I wish I had the $600-but one thing at a time. I wouldn't be able to see a LLMD anyways due to cost.
I haven't had an ASO titre done yet, but I'm hoping to get one. Will it include an EBV titer? I could probably get one thru quest, but if thru Igenex, I would need to pay again and that's not possible. Are you being treated separately for your high titer?
Thanks Connie! I'm trying to do the best I can with what I have! Aren't we all?!?!?
Mum-I forgot where I saw that. Maybe not the direct correlation, but somewhere. If I find it, I'll let you know. I hope that if I do test high Dr.S will coordinate the treatment.
Phil-You mean no more pizza for me, ever!?!? 🙂 Luckily pizza is not my favorite anyway, but was the family choice. I'm trying to stay low in dairy and nightshades and sugar, but it's hard! Gluten is the first step!
Thanks everyone! I'm counting down to my appointment. The weird thing is that my husband used to go to some big airplane event as a boy in Ida Grove. Talk about a coincidence. He said it was one of his favorite places.
I just got my SD, Proven Therapy book and read it in one day. I couldn't put it down. One thing keeps bothering me though. I have no skin involvement/thickening. When I went to see the SD specialist he said my score was a 0-hence the SD sine SD as I only have the blood markers. Do I consider myself super lucky that I caught it early and can potentially prevented any progression with AP? Or is it less likely that my SD has an infectious cause? I hate to go looking for trouble, I'm just worried that the success stories of AP have all had skin involvement. I'm just thinking out loud…
~jen
Jen, you wrote: I haven't had an ASO titre done yet, but I'm hoping to get one. Will it include an EBV titer? I could probably get one thru quest, but if thru Igenex, I would need to pay again and that's not possible. Are you being treated separately for your high titer?
AF replies: Dr. S had an ASO titer on the lab request, and the test came back out of range either the first time I went, or 6 months later. (Think it was 6 months later.) Dr. S prescribed a different type abx to take (pulsed). and I continued Minocin on alternate days. I took it, probably for six months until I returned, and if my memory is correct, I believe that took care of the problem.
Have a good trip. You should love it there in the spring.
AF
[user=2168]PetRescue[/user] wrote:
I hate to go looking for trouble, I'm just worried that the success stories of AP have all had skin involvement. I'm just thinking out loud…
~jen
Jen,
My husband doesn't have scleroderma. He has dermatomyositis but he has done well with an antibiotic protocol. Many autoimmune conditions do well on antibiotic protocols because the antibiotics go after the infectious cause of the condition. I don't think skin involvement is prognoticator of how well one will do on AP.
[user=2168]PetRescue[/user] wrote:
I called Igenex, but the Lyme test is over $600. Unfortunately that is not in my budget-at least not now. Maybe I can have the bad Quest one run just in case it's positive. I doubt it, but who knows.
Hi Jen,
The basic IGeneX Western Blot test is around $200 (test #s 188 and 189) and no need to go any more elaborate than that to start with. This is what most folk around here start with as much of the time it can provide enough information for a Lyme dx. You could start with the standard ELISA and western blot, though, and see what comes up…if positive, you need look no further and you'll have your dx. If not, you may then want to consider the more sensitive IGeneX labs.
Hope this helps!
Peace, Maz
Mum-thanks for the reassurance 🙂 I just want to be a success story too! I know I will be and must think of it as a GOOD thing I don't have skin issues, right?!?! Oh, and I was wrong, it was strep that was linked to Lyme, not SD. It was in a post by JBJBJB. I think she mentioned it in the recent post about her visit to Dr. C.
AF-I will probably just wait for Dr.S to run the test then. He will know best how to treat it anyway. I'll just bite the bullet and pay for it with him.
Parisa-I understand. I guess here's my thing. The term “CREST” was coined in 1964. Now I hate getting caught up on what type of SD I have or what the different types are really, but if I had walked into Dr. Brown's office, he would have never thought I had SD. I only know I have it because of a blood test. To me, that means one of two things. One, I just haven't developed skin involvement yet, but I still have SD. Two, my SD may not (note MAY not) be caused by the same thing as say, perhaps diffuse SD (what most people think of when you hear SD).A couple other things:
1. My point may be moot as it is very possible (even likely) that all SD is caused by mycoplasma. The term CREST may have just been developed to help doctors and patients.
2. I absolutely believe in the effectiveness of AP. I am just concerned that maybe my SD was caused by Lyme alone, or even a hormone imbalance. It would somewhat explain the difference between the limited and diffuse forms of SD. I don't know-it's just something I keep thinking.My question is-can Lyme alone cause SD? Or is it always a co-infection with mycoplasma and Lyme? I've tried to figure this out with no luck. Lyme is so tricky by itself. Maybe I can call a LLMD and confirm? Would they know?
Maz-thanks for the guidance. That is exactly what I'll do! I am going to ask my PCP tomorrow to run a Lyme test first. I'll see what I get. And thanks for clarifying I only need the $200 test to start. That is better, when I called of course they were pushing the $600 one!
~jen
I believe that we are going to take Ryan to see Dr. S soon as he feels it may be time for IV's. Does anyone know if he will allow our pediatrician to continue the IV here or do we always have to go there? The insurance we have does not allow us to go out of state so I am hoping that we can continue treatment here. Thank you!
Sue — Ryan's Mom
[user=1274]luvmywonderfulkids[/user] wrote:
I believe that we are going to take Ryan to see Dr. S soon as he feels it may be time for IV's. Does anyone know if he will allow our pediatrician to continue the IV here or do we always have to go there? The insurance we have does not allow us to go out of state so I am hoping that we can continue treatment here. Thank you!
Sue — Ryan's Mom
Sue,
Search “home infusion” and you will find there are some patients (including myself) did IV at home. JB
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