Your thoughts and opinions

As I know you aren't doctors, I am asking for your thoughts/opinions since people on this thread has Lupus. I am 23 years old and I have been diagnosed with Fibromyalgia, Sweets Diaseas, Mitro Valve Regurgitation, and with an
auto immune disoder. My doctor thinks it could be Lupus but we are in the middle of further, extensive testing. I got mono at the age of 15. got very sick and almost died from it. I finally was able to get over it but never felt like myself again. I was then diagnosed with Post Chronic Fatigue and Fibromyalgia. I have in the recent years started having right side pain around my right kidney. I have had my appendix/gallbladder taken out because doctor was afriad that was causing the pain. The pain went away for a litle while but then I started having alot of kidney infections and kidney stones. I started goin to doctor who specializes in fibromyalgia and auto immune disorders. My ANA was tested and came back positive and has been positive and still positive to this day after having Mono. Two years ago I started getting small bumps you can hardly see but feel on my chest and back. I then developed sores on my legs and I had 3 biopies done and was diagnosed with Sweets Disease on my legs. The cause of the small bumps on my back and chest are still unknown. I have tried exfoliating body washes and all. I also have allergies to most shampoos, body washes, lotions, and laundry detergent. I use a dye/scent free detergent that works fine for me. I also have really bad sinus problems and almost always have a sinus infection. I have had 4 sinus surgeries and still suffering from infections. i also have stomach pain they think has to do with my auto immune disorder. i have severe pain in my stomach that brings diarehha (sp?), high fever, and vomiting. the pain with my stomach is so bad i have had to be admitted to the hospital for pain control and nausea/vomiting control and also to bring down my fever. I also constantly run a low grade fever and i have since getting mono. I think I have about cover everything I can remember. Does anyone else that has Lupus have any of the same problems I do or have an thoughs or suggestions. I am currently on Tylox to help with my stomach pain I experience on a daily basic. I forgot to mention I have back pain and knee problems. I have had 2 surgeries on my left knee and 1 surgery on my right. Thank you for reading this and I look forward to making new friends who can help me through this difficult time. I am so tired of not feeling "normal" and want to feel the way I use to before I got mono. I use to be so active (softball and cheerleading) and now im in constant pain and my body hurts all the time. At 23 years old, I feel I shouldn't have to feel or experience this!!!

[animallover12]

please ignore any spelling error, etc. I am posting fromy phone since I just ran across this Lupus forum! So glad to have found this. (:

[ewford]

You need to post thin in the Lymes community page.  This appears to be straight up Lymes and Mycoplasmas.  The "bumps" could Sarcodisis.  If you have had Endometriosis or a Hysterectomy, this is definately Lymes.

[geminigirl1963]

Hi again!  I'm also glad that you found the lupus forum - I meant to mention it to you when I wrote back in teh pain managmeent forum, but it slipped my mind (dang fibro fog!)

Has your doctor tested your uric acid levels (blood test)?  High uric acid levels can cause kidney stones and I'm wondering if yours is high if that is what is causing yours.  My doctor recently tested my uric acid levels due to some problems I was having and found it was quite high.  My dad also has a high uric acid that causes (or used to before he was put on daily meds to help reduce it) kidney stones to form quite often.  In my case, I've not had the kidney stones, but the elevated uric acid has caused gout.  I've got it in my big toes (most common area for it), but also in several of my fingers.  Right now it is my fingers that are giving me the most trouble.

Stomach problems, urinary problems, rashes, multiple chemical allergies/sensitivities are all very common with both fibro and lupus (or other auto immune diseases).  My lupus was actually diagnosed while I was int eh hospital for a particular GI problem that is only seen in a certain type of cancer or lupus.  Fortunately, all my cancer testing came back negative, so then my doctor concentrated on the idea of lupus and voila, after further testing, it was confirmed.

I know you're currently on Tylox for pain and that does help with your stomach pain also - just remember, though, that sometimes the same pain meds that help us deal with our other chronic pain can also cause problems with our digestive tracts.  It's a fine line we have to walk - finding something that will help wiht our pain, but also something that isn't going to cuase other problems.

Has your doc ever tried you on a trial with prednisone to see if it helps your symptoms?  I, myself, find prednisone works best for my lupus symptoms and flares (unfortuantely).  I've tried other disease modifying drugs such as Imuran and Cytoxan, but the Imuran did absolutely nothing and the Cytoxan, while it was helping with symptoms and my bloodwork was improving, I had to be taken off of it becuase it can be very toxic to the bladder and I started getting recurrent bladder infections with blood in my urine.  Prednisone could also help wiht the "rashes"/bumps/allergies.  Just a thought...

If I think of anything else, I'll be sure to let you know.

robyn

[animallover12]

Hey guys, thank you for the response. Good to see you here Robyn. I will go ahead and let you know that the Tylox has not affected my digestive tract (thankfully). It actually helps my stomach pain and other issues the my stomach causes. We have found it to be most helpful because A) it is one of the many medications I haven't had a reaction to (i use to take Lortab 7 but all the sudden after about a year, became deathly allergic to it. I have recently have had problems with allergic in other medications too. not sure why) and B) It has made me go from no appetite and constantly nausous to constantly having a appetite. I have had weigh problems with flare ups because i was in too much pain and felt to sick to eat that I have went from 105 to 121 now since April. I am very thankful people don't mention to me now that I am just "skin and bones" or that I look "sickly".


I have tried prednisone before but it has been about 3 years ago that I can't remember how much it helped. It obviously didn't help very much or I wouldn't have been taken off of it. I know I was gaining too much weight on it too. We have talked about trying it again but doctor has been kind of weird about it since it was a huge improvement on the medicine last time. I know we will talk about it again at the appointment in a few weeks and we will see what he says or thinks about the idea this time around.

I am not sure as far as the Uric Acid levels being tested. I have had so many blood test done in the past couple of years and even before that, that I can't keep tract of it. I will ask him about that specific test so I will know if it has been done and if not, ask for it to be done (he usually does blood work every visit anyway to check my ANA and other test i have had trouble with in the past)



Ewford, I have not had Endometriosis or a Hysterectomy. I do have Ovarian Cyst but I am not sure if that means anything or not. Your post has me very interested and I am going to ask him about the testing for the things you have mentioned. I know when I first got sick, they did check me for Lymes (if i remember correctly) but I will double check that as well with my next visit. I am going to write all this down, Ewford, that you mentioned so I can make sure if I havent been tested for all the things mentioned, that I do get tested!
Thank you both again so much. I treasure your post/repsonses!

[ewford]

Badabing.  Ovarian Cyst!   You need to get the IGENEX test for Lymes and coinfections.  I can almost gaurantee a Lymes/ Myco diag.    The cycle is usually endomeriosis/cyst/Hysterectomy.  In women w/ Lymes/Mycoplasmas it ALWAYS affects their reproductive organs. (in my research 99%).    Do NOT get the Labcorp/Quest test for Lymes, the Western blot and elisa tests ONLY CHECK FOR ANTIBODIES and their dna pcr test is looking for a strain that does not occur here ( research that and you will see why)  The IGENEX test for Lymes actually looks for the DNA under darkfield staining AND it looks for the three different forms of Borrelia (mycoplasma/cystic/spirochete)  This bacteria is so advanced it has surface proteins that can "attach" the antibodies that your body is trying to produce, so they don't circulate in your blood.  hence, no antibody titres.

  If more people here would listen to the above information, there would be fewer missdiagnosis and more informed patients that could get better.   Please post when and if you decide to get proper testing done, and your results.  I have been way more right than wrong.

[ewford]

ask him to do a CDC57 test on you ,  A normal person has around a 200 reading, a lymes illness would knock that down to 60 or below (give or take)

[ewford]

heres something that condenses it.  Please read and do your own research.

http://www (dot) lymediseaseblog (dot) com/mycoplasma-overlooked-lyme-co-infection/


AND


http://www (dot) jemsekspecialty (dot) com/shownews.php?id=16

[ewford]

"Mycoplasma and Lyme Disease

Various Mycoplasmas have been found associated with chronic diseases such as Lyme Disease, Alzheimer’s, fibromyalgia, Gulf War Syndrome, multiple sclerosis, chronic fatigue, AIDS, ALS, and some cancers.

In the case of Lyme, most doctors don’t know to test for it. Many who do test find that a large percentage of their Lyme patients have it. Added to the other co-infections that many Lyme patients have, this further complicates treatment, although many of the antibiotics used to treat Lyme and other co-infections also work to kill Mycoplasmas.

If you search online for references to Mycoplasma, you’re sure to run across the name of Dr. Garth Nicolson, who’s done extensive research on Mycoplasma and chronic infections. Find more about Dr. Nicolson’s work and publications at www (dot) immed (dot) org".

[whatdabuck]

I just found this forum as well and I'm sorry to hear about your health problems. That sounds terrible and you shouldn't feel like this. I can't offer much help but a lot of your symptoms do sound fairly similar to mine (though much more severe). I also got Mono at age 15 and got really sick and have had a lot of health problems since then. This summer I've been in the hospital a bunch and no one knows what's wrong with me, though I'm having my gallbladder removed actually tomorrow due to my terrible right upper abdominal pain. I am also being tested for Lupus. I've had a positive ANA and a lot of the symptoms (joint pain, chills etc) and I have a weird rash in my armpits, which is super embarrassing and REALLY itchy haha.I also have stomach pain constantly (I also had ulcers due to all the pain meds I was taking, glad to see your stomach has handled those fine) and nausea. I don't have many answers and you sound much sicker I'm sorry to hear, but I do understand your frustrations in not being able to do what you love and feeling like you should be young and healthy. I'm 19 and everyone keeps telling me I'm young and healthy but I don't feel like it at all; my body hurts all the time and I vomit constantly etc. I play soccer and I've been having a really hard time. I hope you find out some answers and I really hope you begin to feel better. You have a whole slew of problems it seems haha. Keep your chin up =D It'll get better soon! Good luck and best of wishes!

-Andrea