posted
Hi guys, I had a Dr. appt. on Monday. He told me that my sed rate is high. It is at 74. He also said that Lyme disease will not do this.
He now wants me to see a RA, to see if this is Polymyalgia. He believes that this is what I have. I on the other hand, don't think this is a proper diagnosis, and really kind of confused as to why he'd give me this diagnosis.
The only red flag that is there, is that my mother has RA, and a Great Uncle and Uncle all had it. Maybe he is thinking on the lines of genetic?
I am getting more blood tests done, and also need the Igenex testing done too. Wished I didn't put that off. What are your take on this diagnosis? It feels frustrating to me.
He kind of scared me too, in the way he said that he feels this is priority, and needs to get the inflammation down.
Thanks for all replies. Fran
Posts: 72 | From South Jersey | Registered: May 2009
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posted
Is this a LLMD? Is the Dr a member of ILADS?
Usually a LLMD will get Igenex to test right away.
People have been misdiagnosed over and over for RA etc, when they actually had lyme. Lyme can cause inflammation.
Maybe he wants to rule PM out. But you probably can have PM AND lyme.
So how well does this Dr understand lyme symptoms?
If he's not a LLMD, you should see one, if you want to have a better chance of ruling lyme in or out.
If he is a LLMD, hopefully he is on the right track.
Good Luck,
James
Posts: 872 | From New York City | Registered: Jun 2008
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Abxnomore
Frequent Contributor (5K+ posts)
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posted
Many of us have had high sed rates. That is one clue that one might have Lyme. Lyme, among other things, is a disease of inflammation. A cytokine storm if you will. One reason of many why it is often misdiagnosed for RA.
A lyme patient must work on getting down inflammation, that is key. There are many ways to do it but I think most of us know that diet and supplements usually work best for us, not additional medications most of which have bad side effects. There are many effective supplements and proteolytic enzymes that IMO work much better such as wobenzym and there are many, many others to numerous to list but there are many posts of this subject if you do a search.
Many of the symptoms of Polymyalgia are those of Lyme. There is no known cause of Polymyalgia and many Rhummies are using lose dose ABX with their RA patients and have no clue why the are benefiting, most probably because many of them have Lyme.
I don't think you need to be afraid of the inflammation, as it is common with many illnesses and is what is causing many of the illness of our modern age. But you do need to learn to make life style changes to get a handle on it and start reducing it. It's very important if you ever want to feel better and get a handle on this illness.
I don't believe medications are the way to go when it can be addressed thru lifestyle changes. One needs to educate themselves about it, even the general population who does not have Lyme.
There are many good books written on the subject.
I suppose seeing an RA and getting some testing would not hurt but I would carefully access if you want to take anything he/she prescribes.You can check he/she out but I don't think your issue is RA just because you have a high sed rate.
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Pinelady
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posted
I think more cases are reported in your area of the RA symptoms than are in mine.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
this is about what I think at this point...lol...hahahaha....
Posts: 72 | From South Jersey | Registered: May 2009
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Pinelady
Frequent Contributor (5K+ posts)
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posted
Fran I believe Dr. L touched on this as evidence he
presented in the IDSA hearing last week. You may
want to read that. I cant remember exactly what
was said but it was something about the geographic
of the different species transmitting different
symptoms. That is to what I was referring.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Hey James, Well I was referred to a very good Dr. that does take my insurance, he does know alot about Lyme disease.
I'm going to give this Dr. a little bit of a chance before I chase around Dr. after Dr. he will work with me, and does listen to all things I suggest and know so far about the disease.
Hey if you are up for suggestions of whom I should go to, than I am all ears. I live in South Jersey.
Thanks Fran
Posts: 72 | From South Jersey | Registered: May 2009
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posted
Thanks PineLady for the info, I will definately check it out. Posts: 72 | From South Jersey | Registered: May 2009
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Abxnomore
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Member # 18936
posted
James is correct that aggressive treatment with ABX over time will reduce the inflammation. IV ABX is very effective in doing so. You may want to discuss this with you doctor.
Lyme will bring on the RA symptoms. In general, we stay away from Rhummies because they don't understand Lyme and think everything is RA and just want to prescribe bad meds to alleviate symptoms while the spirochete continues to run rampant in our systems.
There are many things you can do with supplements and diet to help reduce the inflammation as well to help the process along to feel better.
Also search wobenzym and nattokinase. Wobenzym is an excellent and necessary anti inflammatory and does so much more. Many of us take is.
Some of your pain issues could be coming from hypercoagulation which both wobenzym and nattokinase will help.
Learn about about hypercoagulation, to detailed to write about here but it also will cause pain similar to Polymyalgia.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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TO LIFE
Unregistered
posted
Dear Fran,
I am R/A postive as well. Please check out the article on the parasite thread.
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
PineLady, are you referring to the fact that some people tend to get more RA type symptoms and others more neuro symptoms and that it varies in different regions.
I know initially it was thought that lyme in America was different than lyme in Europe because it was thought that Americans had RA type symptoms and Europeans had neuro symptoms.
Of course, we now know that if left to linger most will eventually develop neuro symptoms but it does have something to do with the strain of the spirochete.
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Pinelady
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posted
Yes what you said Abxnomore.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I don't think my Dr. is saying I have RA, but just wants to rule it out.
I want to know what the differences really are in RA & Lyme? Polymyalgia & Lyme? Do they both come from bacteria?
Will specific blood tests come back as a result of RA? or Polymyalgia? or is it just the inflammation scale they go by?
I'll research more, but if someone can explain I'd be happy to hear it. Thanks,Fran
Posts: 72 | From South Jersey | Registered: May 2009
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It's great that he listens to your suggestions about lyme. Too bad he isn't expert enough himself to not need them. Get the picture?
You say he's a very good Dr but you are "confused" about the dx and disagree with it. What exactly makes him "very good"? Now he's sending you to a RA.
But, I'm not sure why you even think you have lyme. RA does exist without lyme. Why do you doubt the dx? Maybe you don't have lyme at all.
And I'm sorry, you have to ask the differences between lyme and RA? Why hasn't your Dr explained this? This is a pretty important thing for a patient to understand.
RA is an autoimmune disease. Your body's immune system attacks itself. Therefore, as I understand it, one way to treat RA is to suppress the immune system.
Lyme is a bacterial infection, your body attacks the germs. Suppressing the immune system is exactly the opposite of what is needed.
The inflammation from lyme is the bacteria attacking your tissue and getting into your joints.
I would suggest you do a lot of research so you know what may be going on in your body.
Good luck
James
Posts: 872 | From New York City | Registered: Jun 2008
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Abxnomore
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posted
James,
You have explained the differeces very well.
While there are some similarities and over lap in the symptoms between RA and Lyme, such as join pain, stiffness, inflammation and the fatigue
these symptoms bring when one looks at a Lyme symptom list that's about where the similarities end. And, of course, as you explained the causes of the two illness are different.
Fran, have you taken a look at a detailed Lyme symptom list and compared those symptoms to your own symptoms?
If you have many of the symptoms of Lyme that should be enough to make up your mind, as there are many symptoms of Lyme disease that are very different than those of RA.
I get the impression that you are extremely conflicted about whether or not you even have Lyme disease. If you have not studied a symptom list, do so.
One of the ways to know for sure is to start taking the medications your doctor prescribed and see if you react to them. One does not have an reaction, ruling out an allergic one, if they don't have bacteria in their body that is being killed off.
You will know by how taking the ABX makes you feel that it's doing something.
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Abxnomore
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I forget to include this link which answers the question you asked above
To a seasoned lyme patient like myself it sounds like a lot of BS, if you have a lot of lyme symptoms.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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I am taking a break from this site and try to do what is best for me.
Best of luck to all. Thanks to all who were helpful to me. Fran
Posts: 72 | From South Jersey | Registered: May 2009
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Abxnomore
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posted
Fran, of course this is confusing and lyme can make us very emotional when we are on ABX. The spirochete really messes with our brain chemistry.
I really don't think James was trying to debate you at all but only offer you help and an honest opinion.
Clearly you are going thru a difficult time.
Come back when you have taken a rest and are feeling better.
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this is about what I think at this point...lol...hahahaha....
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