Prednizone, Cellcept & IV Clindy

[Margaret Mueller]

My numbers are just the Creatine Kinase.  

Here's from the documents, the others were my poor memory:

9/11: 711.5
9/21: 897.2
10/29: 615.0
12/30: 574.5
3/12: 720
3/22: 835

Thoughts?  Does this tell anyone anything?  I almost wonder why it went down in the fall and then back up.  And why wasn't it important in September?

[TischSEB]

Hi Margaret,

Just for your comparison:

SEB's numbers have ranged from 1200 to 14,000 over the past 2.5 years (he is now “hovering” around that lower number).
The fluctuations are nerve racking and you never know what they really mean.

I am in contact with another Lyme patient with myositis in Boston whose CPKs were similar – up to 18,000.

This probably depends on body type ( I am guessing). SEB used to have pretty big muscles before all of this – so maybe more to burn.

The recommended prednisone and immune supressant seem pretty aggressive for your numbers (just my opinion here!!!).

Tisch

[Cheryl F]

[user=1323]Margaret Mueller[/user] wrote:

 I almost wonder why it went down in the fall and then back up.  And why wasn't it important in September?

I think this is a very important question, and personally I would not start such a drastic new protocol without a very good answer and a thorough personal understanding of the answer to this question.

Personally, I think I would want a second opion before I began Cellcept or this high of dose of prednisone.  I suggest you consider calling Dr. S in Iowa and ask him what his recommended course of action would be for someone with your level of inflammation from the blood tests that you had.  Also, are there other blood tests for inflammation?  What are those?  How do your numbers look on the other tests? 

I am thinking that there may be many more ways than those suggested by Dr. F to address inflammation.  I know of several and I am sure that others will have their own experiences.  I know that Dr. Brown used pred in lower doses to break through the inflammation so that the antibiotics could better penetrate and hit their target.  But as I said before, I wouldn't do any immunosuppressant until I KNEW (and I think Igenex is the only way to KNOW) that Lyme was not in the picture.

My sense is that you have time to mull this recoomendation of Dr. F's over, remember, any doctor is merely a consultant and his suggestion is just that, a recommendation from a consultant.  You get to decide if it is what makes good sense to you. 

One piece of advice.  I took the Igenex tests and did not know that I needed to come off the antibiotics for some of the tests to be effective.  I turned out negative for babs, but that may be due to the fact that I was on three antibiotics at the time the blood was drawn.  Get the information from Dr. H of Igenex so you don't waste time and money.

Cheryl

[Trudi]

Thanks for your response, Margaret.  I am not familiar with this test–sorry I can't be of any help.  I think you have gotten some very good advice as far as getting tested for Lyme.

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Margaret Mueller]

Dear Tisch,

Thanks for the articles.

I had a weak neck.  After several docs, my physical therapist told me all the ligaments and muscles in my neck are atrophied.  She suggested I see a neurologist, who is kind of an arrogant guy who can order labs, and read them, but not much beyond that.  He took one look at me and said, whatever is wrong with you, there is no treatment and no cure.  Then, he ordered blood work and an EMG.  The EMG showed I had no nerve responses in my neck.  The blood work got to my primary doc before he told me what was in it and she told me about the sd.  Three weeks later, the neurologist ignored the sd and told me the genetic test for FSH MD was definitive.   No, there is no family history that I can find on either side going back three generations, and that makes me one in more than 150 or more people.  My instincts have told me that it came on with the sd symptoms, and that it is related.  Maybe the lyme test will explain that one.

I found the roadback, Dr. F and started treatment for sd last July with great results.  Now this…you answered one of my questions, if you go off the immunosuppressant, does your inflammation go right back up?  I want to find out about lyme first, though.  I think that's important.

A month ago, Dr. F put me on clindy for about ten days, and my neck muscles came back. I wonder if this means something.  I had GI problems with it so he took me off.  I am game to try it again, but he doesn't think that it'll get where it needs to go with the inflammation. 

Thanks again, I'm learning as fast as I can.

Margaret

[Parisa]

Cheryl,

Babesia testing is very limited as there are many strains that don't have tests yet.  My husband tested negative but had alot of what we considered clinical babesia symptoms: rib cage pain, muscle pain and destruction, night sweats, etc.  Treatment with antimalarials reversed those conditions so he either had babs or a similar parasite.

[Margaret Mueller]

Thanks Cheryl, good counsel.  I'm only on the doryx right now.  I'll call and ask Monday before I get a draw done.

Did you see Tisch's post?  Makes me wonder why these numbers are so dire, when other's are much higher. 

They always 'forget' to give me my adolase, which is the only other one I think they're doing.  it always seems to come in days later than all the other tests, it must take longer.

I'm trying to learn as much as I can as fast as I can.  I just don't have enough answers, and I'm lacking some of the questions.

Margaret

[TischSEB]

Thanks for the articles.

Then, he ordered blood work and an EMG.

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