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My employer switched insurance carriers this Jan. and my AP doc is not “in the network”. So, I went to another rheumatologist and the good news is that he's willing to prescribe Minocin. The bad news is he doesn't believe in the infectious cause of SD or anything else. The good news is that he's willing to try I.V. antibiotics every 6 mos. as I have been getting. I get the impression he will do this for SD, but not for RA, because he says there aren't effective treatments for SD. He believes that I would have improved without starting AP, but I am not going to stop AP just to prove that the SD symptoms will get worse.
He had blood work done, and I just got some partial results. Vit. D was 16.6, considered low, so he wants me to take 50000 IU Vit. D once a month. The good news is that my SED rate was 14. That's the first time it's been normal. Eighteen months ago, it was in the mid-20s. When I first had symptoms of SD, my SED rate was 64! Normal range is below 21, I was told.
He also remarked that my hands will never be “normal” even though I tried to tell him that they have improved while I've been on AP. Now, I am determined to show him AP works and my hands will continue to improve. Other little improvements I have noted include my dark tan is lightening. I can tell because of the foundation I use. What I've used for the last two winters is too dark now. I think also that my tan skin started before I started AP, so I don't think I could attribute it to mino. Anyone noticing lighter skin?
Hi Susan,
Nice to hear from you again.
Don't let these nay-sayer docs get you down, or get you self-guessing the totally awesome fantastic results you have had already because of AP.
Perhaps your SD may have improved on it's own. On the other hand, if you had not tried AP, perhaps you would be dead by now while waiting for the SD to improve on it's own. … Wow, by the way, isn't it truly remarkably coincidental how all these SD folks who do AP just happen to “be getting better on their own”?
Oh yeah, ref “your hands that will never be normal”, he's probably right about that, particularly after you slap him around a bit….Great news about your SED numbers!
Yes, my wife says my softened shoulders and face have lightened up. Additionally, I have had quit a bit of peeling there as well; not dissimilar to the kind of peeling you have after your Caribbean vacation tan starts coming off. Speaking of which, boy am I and my whole family ready for a Caribbean vacation!
I already hate your doctor…..
Randy
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Susan,
That is too bad you cannot see Dr K anymore. We have seen him twice since you told us about him and he has been really great. He is 200 miles away for us, so we found a non AP Rheumy in Hampton Roads and he consulted with her and then she has been willing to give Jennifer the same treatment Dr K offered.
Is your new Rheumy willing to consult? I am sooooo happy to hear you are continueing to improve. Jennifer is as well. She is still on a lot of medincine besides Minocin, but she has been able to get off of a few of them.
Jack
Hi Susan,
That's great news about your SED rate and that you are continuing to see improvements. I am really happy to hear that. It's unfortunate that your new doctor doesn't believe in an infectious cause for SD. But that is great that he is willing to still do the I.V.'s regardless That's a lot more than most would do. Good luck with your new doctor. I hope everything goes well and that you are able to one day show him your hands as they continue to improve!
Susan – I think I am a lighter shade this winter. I don't remember being as light a year ago but maybe it is my imagination. I know that I did become darker before begining the mino however. In regard to fingers my ring finger is very straight now. I showed this to my accupunturist who is also an OT and she remarked that once bent fingers were not supposed to get straight again. She was pretty amazed. Even though my ring fingers were never badly curved both are more straight than before.
Best of luck with the new doc.
Hey Susan,
Sorry you're being forced to 'train' a new doctor, but you're a veteran now and it should be fine.
Clearly, you're making such progress with the sed rate and skin color. My skin is still improving too, and have to say, wished I could have had a little of the Mino tan. My normally olive complexion is still fishbelly-white with yellowish hues. Thank goodness for makeup! :roll-laugh:
At some point it just becomes comical when doctors discount your progress when the evidence is sitting right in front of them. :headbang: Some day……..some day.
Take care………..kim
Randi, you are too funny! Yes, I wanted to slap him around a bit but I guess I'll have to be semi-nice because he's willing to try the AP protocol. He said he would order home health to do the IVs because if insurance doesn't cover it, it's cheaper. I had the peeling dry-looking skin early on, but not lately.
Jeff, congrats on your straight ring finger! That is my best finger too – I wonder why??
Jennifer/Jack, so glad to hear that Jennifer is improving too! New doc is willing to call Dr. K and find out protocol for IVs.
Mum and Kim, thanks for your support and advice. The advantage I felt I had was that I was asking him to continue the AP, not start it. And boy does it feel good to have labwork #s validate my observations of progress. SED rate has been the only thing that has been abnormal from the start, and yet, there have been several times when I noticed that the doctor didn't order the SED rate test. So, being the take-charge-of-my-health AP patient, I confess that I have sinned more than once, and have written “ESR” on the prescription or checked it off on the labwork sheet, between leaving the doctor's office and going to the lab.
I find it utterly ridiculous that the lab “cannot” give me my labwork results, because of federal and state regulations. Hello! I paid for it, and it's my blood! They say they can only forward it to my physician and I can get the results from him. But then the doctor says to get a copy of my medical records I have to pay $20. If my car needs repair, does the repair shop send the results of diagnostics to my car doctor?!
In Australia (Sydney anyway) there is a space at the top of the form the doc fills out to order tests that says “copies to” and I always ask for one. I've had a few “looks” from docs but always smile sweetly and wait until the word “patient” is written in. I was advised (by a rheumatologist/epidemiologist actually!) to do that and to build a file with all my results in, so that future docs could get a clear picture of my health over the years. She insisted that it was my right anyway. Makes complete sense, doesnt it? Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)[user=52]Susan(SD)[/user] wrote:
I confess that I have sinned more than once, and have written “ESR” on the prescription or checked it off on the labwork sheet, between leaving the doctor's office and going to the lab.
I find it utterly ridiculous that the lab “cannot” give me my labwork results, because of federal and state regulations. Hello! I paid for it, and it's my blood!
Susan,
I love your “taking charge” of your lab work. I have considered doing the same, i.e., marking the req for PSA and cholesterol, etc. Hey, I'm real sorry, but I prefer to only be stuck once.
I was able to go to the lab company's main building and sign a form (and show them my ID) that authorized me to get my blood test results directly from them as soon as they became available. This really turned my life around during the “trying to make a Dx phase”. I could not stand waiting until my next doctor's appt to find out what the millions (well, 15 vials seemed like “millions”) of vials of blood tests revealed. I also wanted to be able to investigate the results myself.
Randy
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Susan,
I haven't committed the sin of marking a box on a lab sheet yet but I have been tempted!
I have a complete file of my husband's medical records. Last year when my husband ended up in the hospital it turned into a lifesaver as I had my husband's latest bloodwork and could definitively show that the drop in his red blood cells was acute.
Susan,
I hope this new AP doctor will be convinced by these amazing improvements you have made. Sorry to hear you “lost” your favorite AP doctor.
Your SED rate is great. 14 is awesome for your condition. Congratulations! It seems odd you could not get the full lab report. I have my report printed and mailed to me each time.
Take care,
JB
[user=266]JBJBJB[/user] wrote:
I have my report printed and mailed to me each time.
Same here, I haven't had any problems getting copies after the doctor has seen the report.
Randy, JB, and Kim, thanks for sharing your ability to get lab results. It gives me hope. It may be dependent upon the lab. I used LabCorp.
Parisa, you are a great health advocate for your husband! Medical records are very important and can save time and $$ by not repeating tests.
Lynnie, I wished I lived in Australia, where your forms and health care make much more sense!
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