Sick again and in pain

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/26/2008 8:47 PM (GMT -7)   
Hi--
I'm sorry I missed the meet but am so glad I didn't go. Something went nuts with me over the weekend and I am still in excruciating pain. I ended up in the Mayo ER not able to walk. I cannot bathe myself, walk for any long time, have trouble using the bathroom and cannot dress myself.  I was told since my hystero I didn't need pelvic exams, and it turned out mayo was really upset about that since I haven't had one since 98. Anyway, I have some kind of bad pelvic infection, a kidney infection, and something bad wrong with my back. They gave me a strong shot of one antibiotic, a drink of zithromax, and flagyl (yum yum). I'm taking hydrocodone for pain and had to increase it and its not working real well. My kidneys are just burning and I want some cortison for my back so bad, but they can't give it to me.
 
Anyway, I had appt with Mayo otho and now have narrowing of my lumbar spine. Probably more surgery. I got lidocaine patches and they are helping some. If I'd have gone to atlanta, it would have been disasterous.
 
Why do we get such stubborn infections and why can't we tell when we have one? I guess maybe because we always feel sick sort of, so we don't notice? I hope they figure out what's causing my spine to get so bad so fast. I got a script for a walker now. I feel ancient.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/26/2008 8:59 PM (GMT -7)   
I am so sorry this is happening to you. I wish we didn't get these kinds of infections, but I know I get weird ones and unless I have had a CBC I will not suspect until it is really bad. I hope they figure out what is wrong with your spine, if they do let me know cause I would love to have someone know what is wrong with mine. I know Humira and then Enbrel have made a significant difference for my spine but it isn't the RA. Maybe it might help you, my rheumy said it meant there is inflammation so if you have inflammation you may want to ask if it is something worth trying.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 6/27/2008 6:29 AM (GMT -7)   
Marji, I hope it doesn't last to long for you. It sounds awfull what you are going through. I hope you get well soon. Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 6/27/2008 10:13 AM (GMT -7)   
(((((( Marji )))) bless your heart, it sounds like you had a terrible time. I sure hope the meds kick in soon and you start feeling better. Take good care of yourself and keep us updated on your progress. Hugs to you
Stacie

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed) and magic mouthwash (for mouth sores)


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 6/27/2008 12:46 PM (GMT -7)   
((((((((( Marji ))))))))

I'm SO sorry you are SO ill. I feel really bad for you that you had to miss the get-together too . . so sad. I'm glad they figured out where the infection was. I hope you'll keep us posted about your back. I think there are many mystery back issues here.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/27/2008 7:21 PM (GMT -7)   
Thanks so much Redrose, Debbie, Stacie, and Rosie. I am still having problems but the lidocaine patches do help me be able to move from bed to sofa and to bathroom. Tomorrow, I have to get my walker, if I feel well enough or send someone out. The antibiotics seem to be helping, esp. the flagyl.

In my case, they are looking at TB as a cause because I had positive PPD and chest at one point. I am asymptomatic when I have it in my lungs, and they never biopsied for it in my hystero, lymph/salivary glands, and never did a spinal tap. It will be hard to treat now becuase the infection is so old and with TB, it creates a calcified shell around itself--which is why I have so many white spots on my xray--calcified lymph nodes, whatever. Sadly, they threw away my lymph nodes when they did my neck last year because they were calcified! Apparently, they should have decalcified them to check for diseases.

I wish I got treated ages ago. I'm praying that they can knock it out now so I can take steroids again when I need them. Sometimes the damage heals too. I am learning that TB can be a silent killer that mimicks other diseases, and sits dormant, waiting for you to be weak and active bouts go away with many different antibiotics, so docs never suspect and think its gone, but it just goes into hiding until you are weak again. Luckily I met someone who worked in a TB hospital and in the lab and is helping me to make sure they do the right tests. I have actually had to know what to ask for and request them by name. Of course, I have no clue what I'm asking for other than particular stains and such, so that they finally test for it so I can make a case to be treated. I see infectious disease at Mayo next week and get a really good chest xray and another MRI of my back. If it's not the TB causing all the trouble, they will probably try to treat me anyway just to keep me from getting it active it if I need steroids or AI gets worse. They will also likely find whatever bug may be contributing to my rapid descent and knock it out. They do a great job on resistant stuff.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 6/28/2008 6:05 PM (GMT -7)   
Marji . . . is positive PPD, a positive TB test?? the patch test?? and what is a positive chest? a chest x-ray? YIKES! If you had a positive chest x-ray . . . WHY are you having to go thru all of this??? What a can of worms! I hope the May docs figure things out and get you on aggressive treatment.

A walker? ((((((((((( Marji )))))))))))

Do keep us posted about this. Will be watching for updates.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/29/2008 9:34 AM (GMT -7)   
I've had a positive TB test since 1987, per a prenatal exam. My son responds with a huge response and hives and was told he is allergic, not to get chest xrays or tell anyone that he reacted. I think this is wrong since TB is carried through the blood (if it progresses into the blood) to the baby, and can effect the nervous system (he has epilepsy,ADHD, deg. disk already at 20!).
1986--Very sick, coughing up blood, Bosto Globe says TB epidemic traced to an elderly immigrant man, people in the HMO waiting room coughing--no chest xray, no tb test done was told "we don't have TB in this country" cleared symptoms with a single antibiotic
1987-prenatal positive, neg chest
1993--pigment changes, ele. lfts, ele. ANA, pos. HCV antibody (not virus) liver bx neg hcv,pos. ppd with single tubercule in chest--asymptomatic for chest TB--no cough, blood
1994-severe endo. and problems throughout body, pigment worsens, neg HCV virus
1998-R. lymphect.,hystero, pneumonia--asked docs about TB and they refused to bx for it, said no problem
They do not treat anyone for TB in this country with a positive PPD unless you have a positive chest xray, are elderly, or have immune system weakness--and in the case of lupus, I don't know if they would treat you, or work in the health care industry. My sister was treated with ATT (anti-tuberculosis therapy) because she was a nurse, though she neg chest xray. I was offered treatment but not forced because they said my tubercule was "encapsulated" and not contagious. After they gave me interferon therapy for Hcv it was gone. My hyperpigment/patchy vitiligo which continues to spread is caused from adrenals and Melanocyte-Stimulating-Hormone, which in up to 90% of cases is caused by TB. Many people are misdx. Everyone with a positive ppd should be considered for tx. 10% progress throughout body. TX is an antibiotics mix damage may reverse. If i lived in India or s. amer., they would have figured this out. My non-US docs have been the best. TB in the rest of body is not contagious, so they don't care, though it can become active in the lungs off and on and notknow it and kill you. Immunosuppressants reactivate it. It never goes away, silently messes you up, unless you take ATT therapy for 6-9 mos or longer.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 6/29/2008 1:45 PM (GMT -7)   
Marji,
   I'm sorry to hear your having such a hard time...((hugs)). I hope your doctors can come up with a treatment plan that will turn things around for you soon. Please take care and keep us updated. You are in my thoughts and prayers.
                                                                                      Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

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