posted
Hi everyone. I have had a chronically high SED rate of over 100 for quite some time now. I have lyme and a ton of coinfections. Has anyone here ever had a SED rate this high? If so, what specific treatments if any helped to bring your rates back down? Thanks. Jess
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Carol in PA
Frequent Contributor (5K+ posts)
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posted
Magnesium.
Fish oil.
Systemic enzymes.
Each of those will help to reduce the body's inflammation that results in a high SED rate.
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Berberine is in many herbs & plants. Different plants have different kinds, so it's good to see a naturopathic doctor for what is best for YOUR body. Often, combining and rotating is best.
posted
high sed rate means inflamation in the body..your dr. should give you other tests just to be sure its from the lyme (it probably is) but as a precaution unless you liver is high or some other obvious reason for a high sed rate he should check to be sure.
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posted
Liver function is okay in my latest bloodwork. I have a negative ANA for lupus, i have anemia though and a high WBC.
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posted
I dont have RA that was checked as well recently. I am currently on doxy and tindamax and am about to begin Bicillin shots.
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Carol in PA
Frequent Contributor (5K+ posts)
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posted
quote:Originally posted by chastain: Carol, what brand of fish oil have you used?
That's what I'm presently taking, and it does a good job. This is in addition to Wobenzym systemic enzymes, and I am so much less stiff and sore, and the headaches are vastly reduced.
You can also read reviews of it on Amazon. I snagged a good deal when it unexpectedly went on sale.
Carlson's lemon flavored fish oil is good, but I was looking for one with very high ratio of EPA.
Country Life Omega 3 Mood has a high EPA, as does Source Naturals ArcticPure.
Which one are you presently taking? Have you read about systemic enzymes?
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posted
Carol, thank you so much! Please Tell me more about systemic enzymes, my knowledge is rudimentary at best in regards to them. Jess
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Razzle
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posted
I've had an SED rate above 100, but only briefly. Was put on immune suppressants then (didn't know I had Lyme/co's), which did bring down the SED rate, but my symptoms got worse (makes sense in the setting of Lyme/co's).
Procede carefully, because with a SED rate that high, many things could make things much worse before improvement comes.
I'd use Bromelain & Circumin (Tumeric extract) first before the stronger systemic enzymes, just to cut down the inflammation.
Take Bromelain on an empty stomach.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Razzle, bromelain is pineapple extract right? I am so afraid of doing IV and even the bicillin shots with my SED rate this high. I am going to see my llmd again this week and need to discuss this with him.
I cannot believe I am walking around and still working with a SED rate this high. I feel so ill all the time, just so unwell. I just checked my previous blood results and I have had a SED rate of over 100 for at least 18 weeks. this is insanity. Jess.
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sammy
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posted
Mine is extremely high also. I've seen a top rheumatologist and 2 hematologists. All docs agree that this is due to my chronic ACTIVE severe infections.
They said that the infections cause tons of widespread inflammation. The only real way to reduce the inflammation is to treat the infections. This was a direct quote from my hematologist!
When I first saw him he did not believe that I could be having such severe problems from an infection. He was so arrogant, so rude, so ... he was dead set on finding another cause. But guess what, he could not.
My LLMD has been treating me for all of my infections. I am also on supplements to reduce inflammation like curcumin, krill oil, OLE, Mag, etc. I also take liver support.
Listen and try to trust the experience of your LLMD. It is their job to help guide you.
Sometimes it is scary to look at labs and focus on individual numbers. Try not to do that. Look at the big picture. How are you doing for real? Pretend you did not know that lab result.
You know that you will only get sicker if you don't take care of yourself and treat the infections that are actively attacking your body.
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posted
Sammy, thank you for the thoughtful reply. Just out of curiosity, when you say your SED rate is very high, are you talking in my range, 100-116? I do agree with you that its lyme and my enormous amount of coinfections that are elevating the rate.
I went to several hematologists a few months ago and malignancies and all kinds of other scary things were definitively ruled out. Again, I appreciate the reply and the advice. Jess.
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sammy
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posted
Yes, my last one was 162 which is way high! This was done in 4/12.
Our doctors can't say for sure what is causing these lab abnormalities. They can only rule out other causes and give their best educated guesses.
For me, the infection theory fits. I thought it might fit for you too.
It is good for your LLMD to be always be alert for other causes of abnormalities too. Sometimes I get upset when my LLMD send me to another specialist but I know that it is because he cares and he wants the best for me. He doesn't want to miss anything.
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posted
Hi Sammy. Oh wow that is indeed very high! Im sorry youre dealing with that. I agree the infection theory is what fits for me.
My LLMd is super thorough. I have been seeing specialist after specialist lately just to make sure other things arent going on. My dr tells me I am his sickest patient, a dubious distinction at best, so he is always on the alert for any other cause for my illness, but again it all comes back to these multiple infections. No other cause can be found for my condition. Thanks again so much for the reply. Jess
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merrygirl
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posted
geez mine was in the high 30's and my llmd was concerned. She decided to use plaquenil. CRP is also a marker for inflammation
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Rumigirl
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posted
My sed rate just came back as 127 with the highest range of normal being 40. I assumed that it was from the blasted infections, which well it might be. But I"m also on IVIG, and I looked it up; that can increase the sed rate a lot. I need to speak to my docs about it. Sigh.
I assume that you're not on IVIG, Jess, right? I hope that you are getting good treatment for your infections and that you have the best LLMD possible. Talk to your dr about this. But sammy is right, as usual.
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posted
Hi rumi. No i am not on IVIG. I am going to see my dr this week and will talk to him more about all of this. I am supposed to add Bicillin shots this week and I am just concerned that if I herx from them, my SED rate will shoot up even higher as it has in the past during previous herxes.
I just worry that a SED rate this high is going to start causing damage to my system that may be irrevocable. Jess.
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Razzle
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posted
quote:Originally posted by chastain: Razzle, bromelain is pineapple extract right?
Yes.
Glad you are discussing this with your LLMD - that is important to do!
I hope he has some good insights for you.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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