Kathm or Judywhit...Question on Sed rate

Discussion in 'Fibromyalgia Main Forum' started by tandy, Aug 22, 2003.

  1. tandy

    tandy New Member

    Hi Ladies..... Hope all is ok today~
    I noticed thru searching previous posts that you both have had high sed rates? Thats been a problem for me over the last couple yrs. A few months ago when it was checked...low and behold it was in normal range~ now,just 2 weeks ago....its back up to 46. Drs. says its high again but what does all this mean!!? I know this test indicates imflammation,but what keeps bringing it up?? I am flaring hard right now~ and the added leg pain is new and hurts like hell. I have FM for 11 yrs. Suspected lupus but nothing concrete. Poss ana once,now its ok?? So I don't know whats going on!!(low titer at the time)
    Just wondered if any of you's could shed some light? What are your DX? have they gotten to the cause of your sed rates being up? Do your drs. treat it?(with the dreaded prednisone) My RA factor is neg. so I guess its not RA?
    I'm just confused and I'm looking into this further. Is 46 real high? any thoughts or help are appreciated!!
    Regards,
    Tracey
  2. tslanker

    tslanker New Member

    And I have a positive ANA. My last sed rate was 51 and my doc. said he believed it was from the fibro even though it's not supposed to be an imflammatory disease. A positive Ana is also not unheard of when you have fibro either. Thanks, Terry
  3. tandy

    tandy New Member

    Thanks Terry!! at least I know i'm not the only one in wonderment!LOL
  4. tandy

    tandy New Member

    Figures I gotta post to people that are'nt even around to see this!!my luck. Oh well.........sigh......
  5. KathiM

    KathiM New Member

    Hi Tandy.........

    Well.........I guess it sounds like you are on the Dr merry-go-round also !!!!

    I have had the bhigh and low sed rates.......3 months ago 72....YEP... I was in pain.... then down to 42......then 2 months later 21..... and 2 weeks later back to 37 and I know right now I am probably real high again as I am in a huge flare of some sort......

    I see u post on the lupus board... Me also.....
    My ANA has been negative but I have clinical signs of Lupus and or Mixed connective tissue disease....we can be negative ANA but still have something before ANA becomes positive.... I finally did have a positive ANA ... it was low positive about 6 weeks ago.


    You are definately having some type of an inflamation process going on and I suspect something in the MCTD order.

    I just went to Rheumy yesterday and she is running blood again but even regardless of how it comes back she has definately told me due to my other signs that I have this going on.
    By the way... I also have FM but this should not make sed rate high...... When it gets in 40 etc.. that is time for concern.
    Has anyone done a C-reactive protein ???? This is a little more definative than sed rate and is also used in DX....

    You can probably find me more easily on Lupus board next time....this one moves so fast and i might miss it.....
    Hope this helped you...
    Kathim
  6. KathiM

    KathiM New Member

    bump for tandy
  7. tandy

    tandy New Member

    I will post on the other board next time....should I have more questions or whatever~
    I've been trying to search around looking for an answer myself~ I'm not real good at researching and finding alot of info, but I have found some and have been reading&reading!!comparing,etc.... I did see some stuff on Mixed connective tissue disease....and I did wonder about that~ (thanks) I've wondered about vasculitis too.???not sure why....I just have alot of new leg pain.It could be Fibro also??The whole line of arthritis conditions and autoimmune diseases......theres so much to consider when your not really knowledgable in all this!!! But you'd think a dr. could at least narrow it down to a couple!! I think i'm at least on the right track...or close!!LOL
    This high sed rate has been off and on for over 2 yrs now.
    But for a good 9months or so..it was normal so I was relieved. now its back up and I was'nt surprized simply by the way i've been feeling!! I am flaring big time!
    Have you thought of Polymyalgia Rheumatica?? That sounds like it could be,other than the usual age of onset is after 50.I am 40. Have you gone on any meds to bring it down?? I did awhile back when it was 58(last yr??) I went on prednisone for 2 months,tapering down like your suppose to. I did feel a bit better too. but the pred. does make you eat way more and I felt bloated,and sometimes dizzy and headachy~Yuk!!
    Sorry this is so long....I'm just doing what my dr. should be doing.But he or she is'nt. I get nothing for pain....my dr. got angry that I wanted something stronger than darvecet so she gave me a referral to a pain clinic.Which will take a couple months to get in!!
    Now last month.....My dr. said she thought it could be lupus because of the possitive,but low titer ANA. Now,recent bloodwork is negative!!!???so now she says"well,I'm not to sure"......
    All this is driving me nuts!! I just want to figure it out and be treated!! I'm in pain and must be a lil cranky too!LOL Thanks for your input~ And be in touch.
    Take care kathy!!! Hugs,
    Tracey
    Not sure about the C reactive protein test?? i'll ask next time. which is'nt untill late october.Why so long I don't know.They sure take they're sweet time about getting to the bottom of this! leaves me hangin![This Message was Edited on 08/23/2003]
  8. ohmyaching

    ohmyaching New Member

    Kathim or anybody
    Can you tell me more about the c reactive protein test? What it is for? My mother had been diagnosed with possible lupus and also with polymyalgia rheumatica. Then the doctors changed their minds and said no she wasn't. Just curious about the test.

    Hi Tandy! Been meaning to write back in response to your hearty New Yorker greeting, but I've been on a diet trying to balance my hormones and unfortunately haven't got the diet balanced yet so I'm pretty tired and don't get as much written as I'd like.
  9. tandy

    tandy New Member

    Hi again to you!!! I forgot about that...so no harm done!
    The hormonal balancing is way out of my league!! I've read alot into that....matter of fact I have the book you mentioned,by Lee.....What your dr may not tell you about peri-menopause. Pretty interesting so far~ Not sure if you recall...I have Endo also. Having any luck with those issues?? Take care :)
  10. judywhit

    judywhit New Member

    Just got back from a 6 day packtrip in the mountains with the horses. did many miles of riding most everyday and I am pooped out! was very dusty and hot and beautiful. As for the sed rate as you know I always test high. Also test high for crp which measures inflamation also. I have started to take bromelaine for the inflamation but cannot tell if it is helping or not. I use to worry about the sed rate and crp being so high but life is to short to worry so I put that to rest. Docs have no answers for us. I have noticed an increase in energy by using standard process bovine adrenals. The lack of sleep and low energy are my two biggest complaints. If you find the answer about inflamation please share with us.
    Judy
  11. tandy

    tandy New Member

    Your mountain trip sounded great!!! I LOVE a mountain trip in the fall!!when all the foilage is at its peak!!Its beautiful!!! I'm sure you could use some rest now?!
    I agree.....worrying does'nt do a bit of good.I'm trying to keep my train of thought in that mode~ Otherwise,well you know...Flare! You'd think the drs. would at least have a guess as to why its high tho?nope! Take care :)
  12. KathiM

    KathiM New Member

    Hi....sorry but I didnt read posts for a day or two here and it moves so fast.......

    C-reactive protein is another muscle inflammation marker....and can indicate heart muscle or ....????
    sometimes with sed rates they do this also and along with aldolase test which is another marker.

    As for your mom , sometimes tests can be pos and next neg.

    Have you both been tested for mycoplasma??? I was and am positive........so amsure some of my provblems are from that !!!!!
    Kathim
  13. ohmyaching

    ohmyaching New Member

    Thanks for the response. I tested negative for mycoplasmas. I ran right out and had the test done as soon as I heard about them. Mom seems good now- symptoms seem to come and go once in a while which is always strange when it happens. The polymyalgia rheumatica seemed to be contagious. My neighbor had it. Then my mother got it after visiting her. Then my aunt got it after my mother visited her. Then my mother's friend got it after she visited him. Before that we had never even heard of it.
  14. judywhit

    judywhit New Member

    and peeked in my chart. There was a letter from rhummy doctor in chart stating that due to high sed and crp she feels I have inflammatory arthritis. Tandy and Kathm I really encourage you to look into bromelaine. Do a search here on it and you will find lots of info. Seems to be a great thing for inflamation. Tandy I also have endo as I noticed both you and Kathm have. This is too weird!
    blessings,
    Judy
  15. tandy

    tandy New Member

    I am dazed.....I did'nt realize that we ALL have Endo also!! this is really weird!! Thanks for pointing out that inflammatory arthritis.I'll check into that and read up!!.....And the bromelaine,I've seen that so many times spoke of here and I have'nt gotten any yet!!stupid me!I guess I need that kick in the ass to get me going!!LOL
    I take a digestive enzyme but I don't think its got that one in it. Any paticular kind/brand? Thanks for sharing info.I've come to learn that with your own health you have to search. Drs. certainly are'nt gonna flip thru pages for ME. You've been a big help....
    Take care :) Regards,
    Tracey
  16. judywhit

    judywhit New Member

    I do not go out and buy alot of the hoopla supplements but when I did reseach into Bromelaine I felt this was a must. Because we suffer from chronic inflammation we need to be concerened about our heart health too. Bromelaine has had great reviews in regards to inflammatory arthritis. Those of us with high sed rates and crp factors should take this stuff. Very cheap. Take 1500mgs daily. I take the NOW brand. Get Bromelaine not bromline. two different things entirely.
    hope this helps,
    Judy



    Cardiovascular plaque is comprised basically of two components. There is the mineral component that can be removed using EDTA as an Anionic Surfactant, and there is a fibrous component that some enzymes are able to disassemble.

    For over 20 years, the American biochemist, Dr. Steven Taussig, of Honolulu, has been studying the biological effects of the enzyme mixture bromelaine. This enzyme complex — it consists of an entire group of distinct enzymes — is obtained from the middle third of the pineapple root. It can also be obtained from the green, unripe pineapple in large quantities. These bromelaines are able to degrade certain internal substances which may cause infarction (the so-called Prostaglandins E2 and thromboxane), thereby reducing the risk of cardiac infarction and the tendency to heart muscle necrosis, as well as simultaneously eliminating any heart pain. Also, Chinese researchers at the University of Iowa have shown that the supply of bromelaine can mobilize deposits in the blood vessels, and carry them off. Thus, by intensive, long-term therapy with bromelaine, it is possible to "clean out" the coronary arteries from the inside. From the biological point of view, this certainly is a much more intelligent therapy than a bypass operation. In the same manner, it is possible, by supplying larger, continuous doses of bromelaine, to dissolve deposits in the aorta and in leg arteries, as well as thrombosis residues, thus saving many a leg from amputation and even restoring them to normal functioning. The German enzyme preparation "Wobenzyme" is of particular effect in this "pipe cleaning."

    The pineapple enzyme bromelaine (not bromelin!), which is absorbed into the bloodstream, can be used without limitation, is as effective eight years later as on the first day, dissolves already existing clots and cleans blood vessel walls, as well as the blood cells already mentioned. "Anavit F3" and "Ananase" are standardized bromelaine preparations. "Wobenzyme" also belongs in this group, even though it must be taken in higher doses. Magnesium, which can be bound to the membranes, such as magnesium aspartate, orotate and citrate, has a strong thrombosis-inhibiting effect. Orthodox medicine, as a rule, does not offer it. Wobenzyme is a very funny invention. It appears most desirable to have pancreatin absorbed into the blood stream since it rather specifically attacks cancer cells, as well as fibrin layers, clots and fresh thromboses.

    Unfortunately, pancreatin is not resorbed. It will mainly stay in the intestine for the acknowledged purpose of digestion. Attempts to infuse pancreatin intravenously have largely failed because of poor tolerance and even shock. In contrast to animal-derived enzymes like pancreatin, plant-derived enzymes like bromelaine (from pineapple) are easily resorbed. If bromelaine and pancreatin are administered in a fixed combination, astonishingly, a part of the pancreatin will appear in the blood stream! A possible explanation for this is that the presence of one enzyme (the bromelaine) will neutralize the electrical properties of the other enzyme (pancreatin) and thus transiently do away with the blocking mechanism, which normally prevents the passage from the intestine into the blood.

    The pineapple enzyme bromelaine is highly effective in the deactivation of antibodies and prostaglandin E-2 . Thus it is also no wonder that the bromelaine are unusually effective in the treatment of chronic rheumatism. Anavit F-3, and Ananase 100 and Wobenzyme are the names of these preparations. Already in the 18th century, the windjammer captains reported on the excellent antirheumatic-effect of the juice from the pineapple root and the green pineapple fruit. By the way, the juice from green, unripe pineapple is very effective abortifacient.


  17. tandy

    tandy New Member

    I believe I saw this before on here???did you post it to or under Jellybellys post??(maybe that fibrofog is'nt getting the best of me after all!!)LOL I did'nt see where I needed it then but sure do now!! I feel like alot of pieces to the puzzle are coming together now!! This is very good stuff.I payed special attention due to the sed rate of ours being high, I have a heart mumur,(never been explained by a dr.)and all my leg pains lately(amongst other symptoms)leg pains are making me wonder about vasculitus or even clots!!!All my own thinking....my dr. does'nt seem to know anything about all this, unless she's keeping it under wraps until confirmed?? I will get some of this bromelaine tomorrow....as i'm getting out hopefully,if illness allows~ You have no idea how thankful I am for you and Kathi helping me out!!
    Really odd that we all have Endo also. Could endo cause our high sed? due to all the pelvic inflammation?adhesions.
    Please stay in touch.I'll keep you posted somehow on this board!!! and please do the same. I peeked at your bio~ What a beautiful picture!!! I think anyone would wish it were them laying in that field!! How lucky you must feel to live right there~ Wow....I am impressed...and a lil jealous! LOL Take care Judy :)
  18. judywhit

    judywhit New Member

    the pic in my bio is in the mountains relaxing in a meadow. Not where I live- but feel very close to God and home in the mountains :)
    I just had to post again because I wanted you to know that most of my pain is in my legs also. I too had thoughts of blood clots and last winter I got such an aweful knot in my leg could hardly walk. If this happens to you go directly to the doc. He made an appointment and had to go in for ultrasound of the veins. All was okay but with all the inflammation we have this also could be a problem with clots. I do believe all the inflammation has caused alot of my pelvic problems. I am glad that you are getting the bromelaine. I just looked in my Prescription for nutritional health book and sure enough it states that bromelaine is essiential for inflammation. I feel if we can get a handle on this alot of our pains will be releived. I am on oxycodone for pain. The motrin kills my tummy.
    Just wanted to talk to you about your leg pain. it can be very serious as you stated.
    Judy
  19. tandy

    tandy New Member

    I got ahold of an older book on inflammatory arthritis,(researching this)and this book had alot of info on Pantothenic acid being very helpful in many patients with inflammatory Arthritis. Ever heard about this or looked into it? BTW...the digestive enzyme blend i've been taking has a very small amount of this bromelaine in it. (not enough tho)So I am getting some today. hope your day is pleasant :)