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bucci
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Date Joined May 2006
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   Posted 2/20/2010 7:55 PM (GMT -7)   
Has anyone been diagnosed with polymyalgia or polymyalgia rhumaticia with these LOW VITAMIN D levels?
can anyone explain the relationship betweenthe SED rate and the VIT D and the polymyalgias??
hep c , lyme
Dad has lyme


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 2/20/2010 9:35 PM (GMT -7)   
bucci,

I knew myalgia meant muscle so I looked it up and I cannot believe that I have never been checked for this. I have ALL of the symptoms! I even have a high SED rate.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


bucci
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Date Joined May 2006
Total Posts : 1477
   Posted 2/20/2010 9:52 PM (GMT -7)   
Yes, and I think there are a lot of old timer lymers with this condition.

My Aunt who is 84 came down with parathyroid stuff and vitamin D blabla and then the polymyalgia rhumatica that they put her on prednisone for a long time and then took her off slowly and then it came back and was given another test and now has something called Big Cell temporal artery condition that is very dangerous.

They are always checking her SED rate and that is how they descide to taper or increase the prednisone. There is a thing called lyme induced polymyalgia rhumatica. fish around for it . I have to read about it myself because i have had all the symptoms as my Aunt and the only thing that would help was prednisone. so I never got the official diagnosis even after being MRI brain neurologist, rhumatologist . All kinds of doctors and they kept blaming all the symptoms on HEP C. Then finally in November I got the LYME blood work done.

So I am half on the prednisone for adrenal exhaustion or insuffiency from being put on cortisol yrs ago for that and trying to stop. But the other reason I'm on the prednisone is because of all these symptoms.
So it stands to reason that you are going through the same thing right now, Cajun. Didn't you just get put on cortisol for adrenal ???

we have to investigate this more.. It is very serious. And I reallly see how the steroids little by little did make the condition worse. But at same time from untreated or mistreated lymes this is where it seems to be going after too many years for some of us. My Aunt has been very healthy her whole life . I am not saying she has lyme but I would not be surprised either. She lived on Long Island her whole life.
hep c , lyme
Dad has lyme


bucci
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Date Joined May 2006
Total Posts : 1477
   Posted 2/20/2010 9:53 PM (GMT -7)   
do all lyme people have the high SED rate?

I never checked mine
hep c , lyme
Dad has lyme


bucci
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Date Joined May 2006
Total Posts : 1477
   Posted 2/20/2010 10:11 PM (GMT -7)   
I just checked. my SED rate is 2 but I am on prednisone.
cajun, what is your SED?
hep c , lyme
Dad has lyme


Razzle
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Date Joined Aug 2007
Total Posts : 4399
   Posted 2/20/2010 11:43 PM (GMT -7)   
My SED rate goes up when my guts malfunction more... At last check, it was in the 50's. I've had it as high as 102 (normal is <20).
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 2/21/2010 2:06 AM (GMT -7)   
Razzle, what does dr say is what can happen from high SED?
Do they give meds for that?
hep c , lyme
Dad has lyme


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 2/21/2010 8:29 AM (GMT -7)   
The only meds I've ever been offered for high SED rate have either been immunosuppressants (Prednisone, Azathioprine, Methotrexate, Remicade) or antidepressants (for the "it's all in your head" stated by the clueless doctors). In my case, Prednisone is the only med that ever did anything. I did a little experiment of my own and stopped all the immune suppressing drugs (never did try the Remicade, though) and went on a liquid diet consisting of organic ice cream and an elemental formula for a few weeks. This liquid diet did more to help me than any medication ever had up to that point.
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 2/21/2010 10:53 AM (GMT -7)   
bucci,

My SED rate has been high for a few years and the only thing that ever hurt me back then, was my ribs. I was given a prednisone pack once for my ribs and it did help but I was never given anything again when my SED rate was high....until now....now that I am in all of this pain. I've been taking 10mg of hydrocortisone in the morning and 10mg in the afternoon and I have to say that I do notice a difference. My pain is not as intense anymore and I don't wake up wanting to die with breakthrough pain. I will be taking 10mg twice a day for two weeks, then 10mg once a day for two weeks and eventually weaning off completely.

I have to find my bloodwork to tell you what the number is but it was high.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


mother natures child
Regular Member


Date Joined Oct 2009
Total Posts : 231
   Posted 2/21/2010 1:44 PM (GMT -7)   
I was told I have a high sed rate. "but its nothing to get excited about!"
 I am a Zebra


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 2/21/2010 3:12 PM (GMT -7)   
Razzle!!! organic Ice Cream ???

finally a cure I can live with !! wow you are so funny. what did you mix with it?

Humm Mother's child ? what type doctor told you a high SED was nothing to worry about?

I never even knew what it was untill my aunt got the polymyalgia rhumatica.

Cajun, I know exactly what you are talking about with the rib pain.

I feel like I am either in horrible pain or very depressed from pain medication.

last night I didn't really sleep. I was more like nodding out and having bad dreams.
then I spend the whole day in bed watching TV like a zombie trying to recover from last night.

year after year I keep saying one more year I'm gonna try to figure this out.

last night I woke up from bad dream and the thing that really made me realize how messed up I am is how
the upsetting thing was that ..I am still here.
hep c , lyme
Dad has lyme


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 2/21/2010 4:20 PM (GMT -7)   
mothersnatureschild,

I don't think anyone is excited that we have a high SED rate. I am upset that I was never tested for Polymyalgia since I do have all of the symtoms of it. Some symptoms are a high SED rate, muscle pain, etc.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


mother natures child
Regular Member


Date Joined Oct 2009
Total Posts : 231
   Posted 2/21/2010 5:37 PM (GMT -7)   
So what is the difference between polymyalgia and fibromyalgia? I just go to a regular doctor!
 I am a Zebra


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 2/21/2010 7:40 PM (GMT -7)   
The difference is that folks with Fibromyalgia do not usually have an elevated SED rate or other autoimmune markers (such as elevated ANA, or an antiphospholipid antibody) in their blood.
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 2/21/2010 7:45 PM (GMT -7)   
Bucci,

about the ice cream...it was vanilla flavor (yuk) but I couldn't have any of the other flavors. Sometimes I'd put a special berry juice with it and make a milk-shake-like thing that I'd eat with a spoon. I had to do the liquid diet because of a partial obstruction in my bowel (caused by Lyme inflammation) anyway, so I turned it into a treatment by using the meal replacement mix (the free amino acids are healing to the gut lining, especially the L-Glutamine). I couldn't even eat mashed potatoes without them getting stuck (not a fun experience...very, very painful). The partial obstruction went away while I was on the liquid diet. I have unfortunately since discovered that dairy proteins cause problems for me too, so have had to give up the ice cream & cheese (never did care much for drinking milk).

Take care,
-Razzle
Chronic Lyme Disease, Chronic Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, chronic Lymphopenia, etc.; G-Tube; Currently weaning off TPN.
Meds:  Pulmicort, IV Doxycycline, Heparin (to flush PICC line), Claritin, Singulair, Domperidone, Colloidal Silver (topically & nasally), probiotics, Liver support herbs, Ailanthus, digestive enzymes, homeopathy.

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