Remission when is it really remission.

[Patti D]

Hi Dolores,
Thank you so much for introducing your self again and sharing your remarkable story. This was so uplifiting. I am reaching year 3 of RA and finally seeing some real normalicy to my life. Wouldn't call it”remission” yet but sure feel positive most of the time.
A retreat spot sounds all to good. Here is Wisconsin we do nothing but complain over our snow and cold weather all winter. It gets to be this time of year and this week with 3 days being over 58 – 62 degrees we saw friends driving with the top down on their converibles and I was even considering going in my kayak tomorrow on the lake as the ice is just about gone. Call us nuts, but we are always looking for a “retreat”.
Please continue to share your story. I am only on minocycline plus a few vitamins and worry if I am doing enough. I guess if I keep going forward then I must be ok. Any tips you have, please share. Obviously, a very positive attitude has been very helpful not to mention a support system. We are quite lucky to have such a great community here not to mention the wonderful volunteers who pay it forward on a continuous basis. Thanks everybody!!!!

Thanks again Delores. I am very grateful for your warm response to all of us!

Patti

[martysfolks]

Dear Patti,  I am the one who found great joy in telling the story.  One I still have to pinch myself to see if I am not still dreaming.  When I read my latest chest xray report, and it said,”findings: normal, I was shocked.  As the experts told me it would never happen.  I stll find it hard to believe and will probably wait a while and then get xrayed again.  The important thing is that it is possible to conquer scleroderma and all other related arthritic diseases.  I refuse to recognize that these diseases are called “autoimmune diseases!”  To me, they are diseases that affect my immune system.  There is no way, by master design that my body which has built in defenses, could turn on itself.  That is as foreign as a mother eating its' babies.  It does not happen in humanity.  It goes against the grain and the thought of it is totally abnormal.  I think the mind is powerful to turn events into successes just by the way we think.  Negative thoughts yield negative returns and the opposite is true.   The one point I stress to everyone who has thanked me for passing on the story of A/P is to let them know that the only repay required is to pass the information on to newbies who are struggling to survive.  Each life you turn around is a blessing for recipient and even more so for the giver.  It is so amazing how strong love is for mankind.  It just keeps on giving.  My dear friend, Lynne G. is the one who led me to the path of wellness again.  Another thing I tell people is to focus only on the remission and not to dwell on the symptoms that rise and wane.  They are temporary steps necessesary for the process.  Those symptoms help you know you are on the right path.  After a while, I actually welcomed the symptoms.  They were the points on my map that told me I was on the right track..  With each diarrhea or vomiting episode, I waved goodbye to more dead micoplasmas.  Same happened with each bout of provuse perspiration.  The cleansing of the body part is to be welcomed the most.  These positive thoughts are the only thing that will get one past the depression that is so much a part of these diseases.  We don't know we are depressed, but others recognize it.  And it is a good thing we don't recognize it because we would go into a depressed funk and never continue healing. 

Today is a historical day in Congress.  I don't know what the outcome will be.  Half of me says, we need better than what we now have.  Then part of me is afraid that we may be stepping from the frying pan into the fire.  We will wait and see.  We shall see!  Take care and hugs all around.  Spread the love, it is healing.  Dolores & Mike 

[JBJBJB]

[user=266]JBJBJB[/user] wrote:

Kim,

I was reading the Lyme treatment suggestion by Dr. Joseph Burrascano Jr. He mentioned about this CD-57 test. I quoted directly from his article:

“<span style="font-size:2]THE CD-57 TEST[/size%;”>
[/size]

Hi JB,

This is just my understanding of the test,  but the CD57 test is really a test of immune function, not for the spirochete, itself, or antibodies to the spirochete, as in the Western Blot. Many Lyme patients are very immune-suppressed, so they don't produce enough antibody to test positive on Lyme tests. This test is helpful in this regard as it can give confirmation of a clinical diagnosis of Lyme when Lyme tests are negative, but symptoms are suggestive of Lyme.

The trouble is that this test is only run by two labs and the sample needs to be shipped within a very brief time-frame of the blood draw or it degrades and the test is useless.

Some LLMDs will use this test to monitor immune function as the patient progresses on antibiotic therapy to ensure that their immune function is improving – as a gauge of progress. It's not commonly used, though, because it's such a time-sensitive test. For instance, my LLMD doesn't use it, because I live in CT and to ship my blood sample to one of the two labs in time would likely be an impossibility or very costly. Also, I tested positive on IgM IGeneX labs, so it wasn't necessary to have further confirmation, as Kim mentioned in her case.

I think it may be useful in some cases, but LLMDs pretty much treat based on clinical picture…as in your case…a typical Lyme patient's presentation.

Peace, Maz

[Kim]

JB,

I've never had the CD-57 test and Dr. C. didn't say anything about it so I don't know if it's something he uses.  My Igenex test and symptoms were conclusive enough to treat so further testing was not a concern.

Take care…..kim

[casey]

Dolores,

I am soo sooo happy for you!!! You obviously have come along way and that gives us all hope.

I am not sure of your whole story but it sounds like you started with AP but the finishing touch in your healing journey was the MP. Am i right about that or not?

Thanks and way to go!!!!

Casey

[martysfolks]

Hi Casey!  I truly feel that with every antibiotic that I took whether I was on AP or MP was a stepping stone in the right direction.  I cannot say one is superior to the other as I feel they are all part of the Antibiotic Protocol.   I know that I had co-existing infections from different organisms in the same family sub-type. (cell wall deficient) that had invaded my immune cells rendering them incapable of protecting me.  In both protocols, I used Minocin.  Minocin was the main antibiotic I started with and took throughout the 5 years and still take as a maintenance dose.  I added the other antibiotics to clean house.  I was sick & tired of being sick & tired, so I decided to fight back with heavy artillery.  It worked!  Not everyone has the same types of bacteria making them sick.  I'm glad my body responded so well to the therapy.  Each person has to research and modify their own defense.  It is not a one size fits all therapy, but according to the medical profession, scleroderma is incurable as is pulmonary fibrosis.  Both are terminal.  Well, life is terminal too.  But definitely, quality of life is well worth fighting for.  My family is happy!  I am happy that they are happy!  I guess we are one big happy family!~~~Happy Holidays to you and all of us fighting these debilitating diseases.  Our best to you, Dolores & Mike

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