Ayuh - UCKY....
NAh - don't think that there is any chance of that ---- unless it's something I could get in Alaska. LOL!
Meki
you might want to have this test run also.
http://arthritis.webmd.com/tc/lyme-disease-symptoms
jasper
I'm just bumping this up a bit to see if HR is around...
With maybe some ideas?
Meki
Because it's the time of night that no one needs anything from you - and you finally settle down and stop being stressed - life becomes easier --- for just a few moments... And something about that witching hour... You've finally gotten used to all of the pain --- that it doesn't matter at this point... LOL!
Hugs again - and hope everything is gonna go better for you - good thing you gots the tests lady - it's a really good idea to keep on top of everything.
Meki
I took your advice (and everyone elses...) Got the lab -Hgb was not to bad (12) - seems dehydration may be the biggest culprit - I think I have lost track of drinking - need to mark the bottles I guess. He also thinks we may have to lower the Peg just a bit. He thinks the Enbrel (Biogenetic TNF blocker for RA) that I am taking is acting like a booster shot - so I am flat out after it on Wed...and Sun from the Peg....some of this is continued on Medimoms thread...
http://www.medhelp.org/posts/show/513131
Mega huglets back to ya - funny the only time I feel barely OK is at midnight - whats with that?
Thank you so very much for taking the time to put that in there --- i know you're feeling awful --- So I sincerely appreciate the effort.
YOU BETTER GO IN.
Breathing and chest pain may or may not be related - it certainly is a bad side effect or even possibly one that is VERY BAD...
Don't wait Mikki - I need you to be around for my hopes of getting people organized and getting them together and believing that this world can end HCV.
Hugs babe!
Meki
Hey There,
There is PDF that sometimes launches @ http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf
If not google extrahepatic manifestations in HCV and pick the second on the list - just the basics but good general info - there is more info there as well on the adjoining links.
Let me know how it goes - I'm having a bit of a rough time the past few days with chest pain and shortness of breath when standing for any time at all - may have a drop going on - better get in for a test - darn.
God my spelling sucks lately. But anyway. Yeah. I was talking to my mom about this today. She said, "You should just find a really good diagnostician." oxymoron... ? ;)
OK - so the RA could possibly still be in existence without the ANA... Or just about a zillion other things. Sigh... don't you just wish they had a test that could go ___ YUP____ this is what you gots... you gots it toots...
Instead of all this malarky jumping through hoops, flying, hotel staying stuff?
Ala - thank you so much for taking the time.
Meki
But while there is the commentary that INF usage can cause AIs in the Patient and Doctor Lit profiles --- There are no freaking articles or studies that I can find that document that. Nothing that shows the mechanism... Nothing that shows anything I can show him...
-------------------------------
There is a good article somewhere which I may or may not be able to find again, but at any rate, (its a study actually) if memory serves it shows that 20% of treaters get an auto-immune disease such as RA during the course of treatment involving interferon. (actually its 19. something I think, but close enough). Of course, this article was handily saved on the computer that I had when I first started treating. And... I broke that laptop and the computer right after it by falliomg asleep using it and having it slide off my lap onto the hardwood floor. Thirty times. Or more. Per computer. Also, there is research with hepc in general causing RA in particular, as well as some other auto immune issues.
The MOST interesting thing about the article was that a positive or megative ANA going INTO the interferon tx had NO PREDICTIVE VALUE whatsoever on who would or would not gain a tx related auto immune issue, again, usually RA. And when I say gain, I do mean that as I recall, it showed that you come out of tx WITH the new autoimmune issue. Interferon being such an adorable system friendly sort of drug and all...
I have tx related RA and I'm also trying to find a rheumatologist. During tx, it was SO severe I couldn't move without the heavy pain meds for the first four or so days after each shot, but the pain levels are getting better now since I've been off the shots for about five weeks now and I'll be working down off of the meds I'm on now until I get to a level that keeps me in good pain stasis. The addition of high levels (300mg 2x daily) of lyrica really helped/helps with the pain in my hips, knees and the tops of my ankles - which used to literally leave me almost screaming sometimes even WITH morphine, but for whatever reason it doesn't seem to do much for my wrists and fingers.
My personal opinion (based just on conjecture) is that for acutes like me, immune issues after tx are really more likely to be due to tx alone given the short amount of time we have the virus, whereas its a more complicated nut to crack when you have had hepc working in your body for several years, and then have had interferon on top of that.
Although the pain specialist I see has more a view of, "It doesn't really matter why you're in pain if you're hurting, it just matters to establish adequate pain relief." Personally, I'm a lot more controlling than that and I like to know they why's and wherefores out of some misguided (probably) impression that I can control the situation better or come up with other routes of cure if I know the etiology.
Oh and yeah --- I didn't understand all of that either...
_______________________________
Anachoice (TM) Screen w/ REFL to TITER IFA ANACHOICE --- NEGATIVE
RHEUMATOID FACTOR 92 H *********************
C-Reactive Protein 0.17
Hemoglobin A1c 2ith MPG Hemoglobin Alc 5.5
_____________________________________________
The Rhematoid Factor being so high --- with no signs of arthritis is what is concerning them the most.
For me - my concern is pain - and my quality of life --- I'm getting tired of feeling like I have broken bones when I get up in the morning --- and feeling like I got ran over by a Mack Truck through the whole day.
The concern methinks is the possibility of Lupus. Personally - I think it's Fibro with maybe some degeneration of the tendons, cartilage, and muscles...
But -then ya never know --- I am assuming they're going to run me through a diluge of tests on the 21st/22nd. I figure then I'll have a better idea...
Life is bound to get interesting... LOL!
Meki
Mentally for the first time in a VERY LONG time I feel FANTABULOUS!!!!
Physically however - ick. LOL!
When I feel bad - it often helps me to try to be more positive --- Laughter --- fun --- helping others keeps me positive.
I find sharing all those makes life good. Yanno?
Love ya Eric - and I'm always sending you GREAT Thoughts and Love to you and Mafalda!
I thought ANA negative was a good thing! I was tested for Lupus once and my ANA was negative. I thought that meant you didn't have any serious auto immune problems. I have to confess that I know nothi9ng about this area though.
I somehow missed this thread. I guess I am distracted with my own problems, so I apologize for that. I hope you feel better soon.
You have shown so much energy lately that I though you were feeling great.
Eric
Sheesh --- I'm humbled.
OMG - and here I was worried... LOL!
Dang - You could be a doctor - with as much info as you've got stored.
I'm thinking HCV is the culprit to a majority of problems for a lot of folks who don't know.
I'm just trying to figure out if The HCV or the Interferon is the culprit for me.
Sheesh - it's like the snake that ate the tail.
LMAO!
Anyhow --- Many hugs - and many thank yous.
Meki
Yep - I got it during a complete blood transfusion when I was 16. Been sick my whole life - one thing after another - constantly in the hospital with things they couldn't explain (they thought lupus, meningitis, graves, limes, etc), I've had all kinds of rashes, shingles, autoimmune problems, RA, Ostio, IBS, Scoliosis, Migrains, lost 1/3 of my large intestine - Ischimic Colitis, got autoimune bladder disease (Interstitial cystitis) Have sorjens (sp) hyatal hernia, mega cysts on ovaries and uterous (still on the pill to ease the cramps), Have major TMJ, very bad tinnitis, Colitis, mega cardiac problems and various metalic parts evenly distributed throughout my body - titanium rods in neck and feet - screws, bolts, wire...I'm real fun at the airport - ha...but hey up until this darn tx I was still riding and jumping my horses...(after 15 surgeries...but whose counting...actually it's 16 - just got one on my index finger - very apropriate for tx - looks like I'm flipping people off.)
Funny thing - my liver levels have been elevated for years and they always blammed it on the RA meds - didn't find out about HCV until this Jan when they had to test me for a new med. You'd think the fact that I was so sick that I had to stop work a year ago would of been a good indication something was up...They have been practicing medicine on me for a long time..
Thank You Mikki --- I'll know more in a couple of weeks... The hurry up and wait game again. LOL!
Mikki - do you think that you had HCV prior to RA?
Hey gal - sorry I've been out of touch - bad body week - guess you are experiencing a bit of my life eh?
My RA started 14 yrs ago with fever - body pain - then localized pain in the larger joints - shoulders, elbows etc. At several points could not walk - took 4 months to dx with regular docs - you need a GOOD Rumy - and make sure they are agressive - no wosey advil - you need to stop this in it's tracks (if you have it) or you could end up like I did 15 sugeries later.
RA is not a death sentence - these days the biogenetics like I'm on (Enbrel) are fabulous, very little sides and hardly any degeneration - but it is kind of like hearing you have HCV...a real blow.
But before we go there let me paste this for you about the RA factor (mine is 80+ usually)
Rheumatoid factors are antibodies directed against the Fc portion of immunoglobulin G (IgG). A positive test for rheumatoid factor is by no means pathognomonic of rheumatoid arthritis, but is present in 70 to 90% of patients with the disease. The titer does not correlate with the activity of disease, but patients with a high titer rheumatoid factor are more likely to have erosive joint disease, extra-articular manifestations, and greater functional disability. In contrast, generally, rheumatoid factor negative patients exhibit a milder disease course. Rheumatoid factors are also detectable in non-rheumatoid patients who have chronic antigenic stimulation, such as prolonged infection (bacterial endocarditis, tuberculosis, cytomegalovirus, human immunodeficiency virus (HIV), collagen vascular disease, or dysproteinemia).
They will also get sed rate. This is a good link for you to get general ifno and if you are dx with it let me know and we can chat.
http://www.hopkins-arthritis.org/arthritis-info/rheumatoid-arthritis/rheum_clin_pres.html#labo
Sorry you feel bad - (our bios are vey sililar - did you see mine on my profile?)
hugs...mikki
OK - Flying over to Anchorage May 21st thru 23rd.
Guess I'm gonna be going through a Gamut of testing.
I'm developing an allergy to doctors.
I really have no idea on what the heck this will mean - but life is what it is....
LOL --- hey at least the HEP stuff came out AWESOME!
I'm VERY pleased with that...
Meki
Geez girl,
That is a lot for one person top have had to go through. I would definitely go see someone else about this if possible. It is tough when you deal with a doctor who is just not knowledgeable, even if he or she is a great person. I guess it is probably tough to find a good hep doctor in Alaska. But it sure must be beautiful up there!
I have to hand it to you as I read your posts often, despite it all you sure do manage to stay positive. My hat is off to you. I have always been the eternal optimist but lately i am getting cynical in my old age LOL.
I don't know about the RA stuff but that sure is a lot of *'s there!
I'm so sorry that you're in pain. Really. I also take Ultram (Tramadol) when I need to for pain. I can't take NSAIDS, so if it's too much soreness for Tylenol that I take the Ultram.
I hope you feel better soon and that they're able to get to the bottom of it for you.
Susan
Thank you Susan... Sigh... I wish I could say this was just common soreness... But honestly - I feel like I'm 100 already and I'm only 41. I attributed it to HCV and just the INF and then my hysterectomy... But it's May... and it's getting progressively worse on a weekly basis.
But thank you so much for letting me know - I'll sincerely keep it in mind.
The doctor just called. They're going to try and get me set up with the Rheumatologist as soon as possible.
He said he has NEVER seen an Rheumatoid Factor so high --- and with the Ana-Choice, C-Reactive not representing he has concerns for other issues.
Greeeeeeeeeeeeeeeaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaat.
Now this means he hasn't seen a lot of Rheumatoid Factors or My count is off the freaking charts.
LOL! Go figure.
OK - I'm going to sit here and just freak out a little bit... Sigh.
Anyone?
I don't have any experience with the Rheumatoid factor, but I do have experience of post treatment soreness (worse during the winter than during our 9 mon. of the year warm FL weather). So, I'm thinking you live in Alaska, correct? Not that where you live would have any bearing on it, just curious about the cold coming into play. Also, I had a hysterectomy at 30 (but ovaries were left in) then, at approximately age 39, they had to go back in and take the ovaries and tubes. Prior to the 2nd surgery, my ovaries had shut down (treatment related??) I do not know. By the time, I'd had a couple of treatments under my belt already. I take Estrogen only (a plant based gel) and it does help to a certain degree. I tried to stop taking it for awhile and I had a lot more pain. So, with the blessing of both my Gastroenterologist and my Gynecologist, I am continuing on with the Estrogen only gel until I hit age 50 (a normal menopausal age), at which time, I will try to go to some type of natural hormone replacement that is a prescription that the doctor's office can prescribe. Anyway, I just wanted to share my story with you. I have no idea if it will help any or not. Susan
OK - I'm going to put out my Quest Diagnostics Results...
Anyone - feel free to comment on these --- I'd like some opinons - or ideas...
I'll note those items that are OUT OF RANGE with *** and ALL CAPS
Lipid Panel Triglycerides 130
Cholesterol, Total 178
HDL CHOLESTEROL 38L****
LDL Cholesterol 114
Chol/DHLC Ratio 4.7
Comprehensive Metabolic panel w/ efgr glucose 96
UREA Nitorgen (Bun) 16
Creatinine 0.72
eGFR Non-Afr American >60
eGFR African American >60
Bun Creatinine ratio 22
Sodium 141
Potassium 4.8
Chloride 106
Carbon Dioxide 24
Calcium 9.3
Protein Total 7.3
Albumin 4.4
Globulin 2.9
Albumin / Globulin ratio 1.5
Bilirubin, Total 0.6
Alkaline Phosphatase 71
AST 17
ALT 22
HEPATIC FUNCTION PANEL
Protein, Total 7.3
Albumin 4.4
Globulin 2.9
Albumin/Globulin Ratio 1.5
Bilirubin Total 0.6
Bilirubin, Direct 0.1
Bilirubin, Indirect 0.5
Alkaline Phosphatase 71
AST 17
ALT 22
CBC (Include Diff/PLT)
White Blood Cell Count 6.8
RED BLOOD CELL COUNT 5.15 H******
HEMOGLOBIN 15.6 H*****
HEMATOCRIT 45.3 H*****
Mcv 88.1
Mch 30.3
Mchc 34.4
Rdw 13.8
Platelet Count 199
Absolute Neutrophils 4964
Abs. Lymphocytes 1265
Abs. Monocytes 408
Abs. Eosinophils 150
Absolute Basophils 14
Neutrophils 73.0
Lymphocytes 18.6
Monocytes 6.0
Eosinophils 2.2
Basophils 0.2
Anachoice (TM) Screen w/ REFL to TITER IFA ANACHOICE --- NEGATIVE
RHEUMATOID FACTOR 92 H *********************
C-Reactive Protein 0.17
Hemoglobin A1c 2ith MPG Hemoglobin Alc 5.5
Mean Plasma Glucose 119
________________________________________________________
Ok - so I know that I'm VERY happy with my Hepatic stuff... Dunno about the Blood cells and stuff --- but they aren't that far off from high range normal.
But I'm concerned about the Rheumatoid Factor.
I do understand that chronic Hep can cause some raise --- but that's pretty freaking high --- isn't it?
Ideas --- Am I right on the money with poss RA... Or some sort of muscular skeletal issues?
Doc hasn't discussed this with me yet - they just came in...
What other tests might you guys suggest?
Thanks - in advance for your help - thoughts and opinions.
Meki
oooooooooooooooooooooo sorry...my o key kept sticking, hpoe yu can read that..darn