Guest guest Posted October 1, 2000 Report Share Posted October 1, 2000 Could this be a herx? M. RA, minocin 100 mg M-W-F Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2000 Report Share Posted October 1, 2000 Dear Cooky, You are in my prayers. But I am waiting to hear from Ethel or as you said. to decide whether you are in a TERRIBLE herx or slipping. Will be sending you warm fuzzies and I am so sorry for your pain. Love, cooky wrote: > Well I really hate to tell you all this but its been two minths and I'm > sure now.My symptoms are retuning by leaps and bounds. At first I > thought it was from wellbutrin that I started to take and then stopped > (more on that later, I am on nothing now). Then I thought it was from > the oral HGH i started taking (not taking it now). But my left wrist and > hand and fingers are getting worse. Stiffness and pain in the middle > nuckle of the middle finger mostly. Left knee feels like broken glass > and all my muscles hurt. Shoulders feel out of joint. There is no > swelling thou, but never was any before. I loose my balance at times > again and my eyes water really bad again. Ankles are stiff and loose all > at once. Funny pains are moving around the joints of my body just like > when this first started. > > I am still on Minocin 100mgms MWF twice a day. And Clindy IV's weekly. > I'm not taking any NSAIDs but lots of supplements that I won't go into > here. Acidophilis definately along with diflucan and grapefruit extract > if necessary. I never stopped any of my meds. If this is a flare it > sure is lasting a long time and really feels like its just starting > instead of a year into remission. I have been on AP 3 years this October > 19th and in remission since last September. I have never followed the > diet very closely but I do try to watch sugar, chocolate and birthday > cake. Had none of these when it started. > > Needless to say I am scared and would love any input especially from > Ethel or Chris. > > cooky > > > To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2000 Report Share Posted October 1, 2000 Cooky.....I know we can all sympathize with you and hurt for you too. What does your doctor have to say about this? Just curious. Maybe it IS a herx...that's always a possibility. Hang in there (I know easier said than done)...if you were in remission once for that long, it CAN happen again. Judy (Keels) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2000 Report Share Posted October 2, 2000 Cooky, I'm so sorry to hear that you are having such a bad time--it must be extra-hard after feeling so good. Remember that we with RA are more susceptible to septic arthritis? I am thinking of how you had some surgery done a few months ago. Surgeries and the possibility of iatrogenic infections always scare me...I know they can develop up to a year after joint surgeries, but am not sure if this applies to other surgeries. One possibility to ask the doc about. I would also ask the doc about the possibility that the anti-depressants kicked something off. Wasn't there some info posted recently from Dr. Nicolson' ssite about how these meds can interfere with the antibiotics? Have you ever been on a higher dose of minocin? Ever tried one of the other antibiotics? I hope you find some answers soon. {{{{{{{{{{{Cooky}}}}}}}}}}} Liz G Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 Dear Cooky, I'm sorry you're feeling lousy. It could be a 'two steps backwards' but here is list of things to check at this point: a) run your lab tests again and see if there is any improvement - if so, your symptoms will probably improve again. it might be time to switch antibiotics. c) try one antibiotic in the morning and a different one at night, or sequence them taking one for six weeks and then switching to another for six weeks. d) look for other infections in the sinuses, allergies, root canals, intestinal tract, etc. that may be impeding your progress and must be addressed. Can you have a candida and leaky gut test done again? Leaky gut, which often causes backsliding, can be treated with l-glutamine. e) have you had a recent ASO test done for streptococcus? The organism tends to reoccur and needs to be eradicated. f) you might need intravenous immunoglobulin. g) have you had the complete panel done for all mycoplasma? h) diflucan is pretty toxic stuff if you're taking it regularly and might be contributing to a gut problem. Olive leaf and grapefruit seed extract are better choices. See if you can find anything in the list that you can check. I know how you feel as Janene slid backwards at about the same point as you are. She ended up staying on minocycline and swapping the clindamycin IVs for oral clarithromycin on Dr. Chiu's suggestion. I'm not suggesting that is the answer for you, but some adjustment of the therapy might be needed at this point. Let us know how you get on and I hope you feel better soon, Chris. On Mon, 2 Oct 2000, cooky wrote: > Well I really hate to tell you all this but its been two minths and I'm > sure now.My symptoms are retuning by leaps and bounds. At first I > thought it was from wellbutrin that I started to take and then stopped > (more on that later, I am on nothing now). Then I thought it was from > the oral HGH i started taking (not taking it now). But my left wrist and > hand and fingers are getting worse. Stiffness and pain in the middle > nuckle of the middle finger mostly. Left knee feels like broken glass > and all my muscles hurt. Shoulders feel out of joint. There is no > swelling thou, but never was any before. I loose my balance at times > again and my eyes water really bad again. Ankles are stiff and loose all > at once. Funny pains are moving around the joints of my body just like > when this first started. > > I am still on Minocin 100mgms MWF twice a day. And Clindy IV's weekly. > I'm not taking any NSAIDs but lots of supplements that I won't go into > here. Acidophilis definately along with diflucan and grapefruit extract > if necessary. I never stopped any of my meds. If this is a flare it > sure is lasting a long time and really feels like its just starting > instead of a year into remission. I have been on AP 3 years this October > 19th and in remission since last September. I have never followed the > diet very closely but I do try to watch sugar, chocolate and birthday > cake. Had none of these when it started. > > Needless to say I am scared and would love any input especially from > Ethel or Chris. > > cooky > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2009 Report Share Posted October 7, 2009 There is a new type of MRI technology that seems to be all the buzz on PubMed. This particular article can be downloaded for free: 1: Isr Med Assoc J. 2009 Mar;11(3):144-6. MRI, not CT, to rule out recurrent cholesteatoma and avoid unnecessary second-look mastoidectomy. Migirov L, Tal S, Eyal A, Kronenberg J. Department of Otolaryngology, Sheba Medical Center, Tel Hashomer and Sackler Faculty of Medicine, Tel Aviv University, Ramat Aviv, Israel. sabim@... BACKGROUND: Aural cholesteatoma is an epidermal cyst of the middle ear or mastoid that can be eradicated only by surgical resection. It is usually managed with radical or modified radical mastoidectomy. Clinical diagnosis of recurrent cholesteatoma in a closed postoperative cavity is difficult. Thus, the accepted protocol in most otologic centers for suspected recurrence consists of second-look procedures performed approximately 1 year after the initial surgery. Brain herniation into a post-mastoidectomy cavity is not rare and can be radiologically confused with cholesteatoma on the high resolution computed tomographic images of temporal bones that are carried out before second-look surgery. OBJECTIVES: To present our experience with meningoceles that were confused with recurrent disease in patients who had undergone primary mastoidectomy for cholesteatoma and to support the use of magnetic resonance imaging as more suitable than CT in postoperative follow-up protocols for cholesteatoma. METHODS: We conducted a retrospective chart review of four patients. RESULTS: Axial CT sections demonstrated a soft tissue mass in the middle ear and mastoid in all four patients. Coronal reconstructions of CT scans showed a tympanic tegmen defect in two patients. CT failed to exclude cholesteatoma in any patient. Each underwent a second-look mastoidectomy and the only finding at surgery was meningocele in all four patients. CONCLUSIONS: Echo-planar diffusion-weighted MRI can differentiate between brain tissue and cholesteatoma more accurately than CT. We recommend that otolaryngologists avoid unnecessary revision procedures by using the newest imaging modalities for more precise diagnosis of patients who had undergone mastoidectomy for cholesteatoma in the past. PMID: 19544702 [PubMed - indexed for MEDLINE] For other interesting abstracts of new articles use this as your search query in PubMed: " MRI AND cholesteatoma " (without the quotes). To get to PubMed: http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed & itool=toolbar If they can show that this is just as accurate as a second-look surgery, imagine not having to have a second-look surgery, eh? We may just have our first winner of an award from the " Intergalactic Group of Cholesteatoma Haters! " Matt gingertosser23@... wrote: > > > I have been told my Cholesteatome has grown back after 5 years, had a > CT scan, radiologist wants me to have a MRI scan before surgery can go > ahead, he is concerned about it being deep inside my inner ear. Anbody > had a MRI before to see Cholesteatoma? > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2009 Report Share Posted October 7, 2009 Chloe's next step is an mri next spring. The surgeon doesn't want to expose her to any more radiation if he can help it. On 10/7/09, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2009 Report Share Posted October 8, 2009 MRI scan is normal, I had one prior to get my cholesteatoma removed and what you see if MRi's performed on TV they overate it, its basically the same as getting any other scan/x-ray.cholesteatoma From: gingertosser23@...Date: Wed, 7 Oct 2009 21:12:02 +0000Subject: Its back I have been told my Cholesteatome has grown back after 5 years, had a CT scan, radiologist wants me to have a MRI scan before surgery can go ahead, he is concerned about it being deep inside my inner ear. Anbody had a MRI before to see Cholesteatoma? Check out The Great Australian Pay Check Take a peek at other people's pay and perks Quote Link to comment Share on other sites More sharing options...
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