2nd Relapse in 3 months

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Postby viper498 » Mon Jun 11, 2007 5:52 am

Tory,

Yeah, I know, sorry about that. I can get negative at times or even more so, cynical.

What you say does sound logical, but I'm not even looking at Minocycline in this respect yet. I am assuming I am getting anti-inflammatory effects from it. If it really was bacteria this certainly would make sense. I would like to say that it definitely was bacteria, it would make a lot of things make more sense. Thanks for your support. You all have no idea how much it helps.

Brock
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Postby Chris55 » Mon Jun 11, 2007 6:07 am

Brock--just as info only--when my daughter started her natural treatment for strep bacteria (also a spirochete), ALL of her symptoms were revisited in reverse; however, they were mild and fleeting. She did have the herx reaction--severely at first--and then milder as time went on.

I know you want to panic! My daughter's EDSS score was like .06 but she always knows when a "real" relapse is coming about 3 days before. One of the worst things for any illness is stress....so get into some kind of meditation. They asy it really helps!

Keep us posted and we are rooting for you!
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Postby tory2457 » Mon Jun 11, 2007 6:09 am

no problem!
I can't tell you, I STILL (kindof) question my new path to recovery! How can I not? I'm convinced of this bacteria,,,,I have tests to prove it,,,,yet, where are all the neuros? The science is out there.

It's not easy to be in a limited yet successful group.

My doc does say that the psycological part of recovery is a difficult one.
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Postby robbie » Mon Jun 11, 2007 6:15 am

My daughter's EDSS score was like .06

Do you mean 6 Chriss . i've never heard of .06 before.
Had ms for over 19 years now.
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Postby Chris55 » Mon Jun 11, 2007 7:07 am

Robbie--she is actually a .06 according to her neuro (one of the leading MS specialists in the southeast).

Tory--what are you doing for treatment? I, too, am convinced a bacteria is involved; however, I also believe this disease is not just "one" disease. My daughter has adjusted to her "recovery" beautifully. I am the one who has the problem! Every day when I wake up, I have to "remind" myself her MS has stopped (and this according to her neuro).
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Postby robbie » Mon Jun 11, 2007 7:26 am

Robbie--she is actually a .06 according to her neuro (one of the leading MS specialists in the southeast).

What does that mean as far as her disability?.
Had ms for over 19 years now.
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Postby Chris55 » Mon Jun 11, 2007 7:39 am

It meant she had very little disability--her case considered very mild. Now--her lesions? For me, another story. They were enhancing before her treatment and man, those suckers glowed and appeared HUGE!

And the medications she was on EVERY day just to get through the day were unbelievable. I had huge concerns about the #/high dosages. If that was considered "mild", I cannot imagine a severe case!

The only drug she is on now--and weaning herself as we speak--is her Lexapro. We ALL asked her to wait until her dance school broke for the summer so that she would not have a lot of stress and to slowly wean herself off.
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Postby tory2457 » Mon Jun 11, 2007 8:00 am

Chris,

Good news hearing about your daughter. How long has she been symptom free? What was her course of recovery?

I'm being treated for Lyme disease and all the co-infections that go along with it.
Testing unfortunately isn't very good for things like Babesia, Bartonella, Mycoplasma, Erhlicia, Cpn, etc, so most good lyme docs treat all the above along with the borrelia infection. I've been on Minocycline for 8 months now but always with another form(s) of abx; never just Minocycline.

Testing for lyme is also flawed,,so many of us test with the ELISA which simply isn't "sensitive" enough and then the CDC removed specific lyme bands in order to have a positive result. this is the reason that a clinical diagnosis for lyme is necessary.

My doc also checks CD57 and runs an Immune Complex test. These combined results gives a picture of how my immune system is doing. Cpn, and these other bacteria clumps together our antibodies so they can't recognize the bacteria; can't fight it off! I flunked both the CD57 and the Immune Complexes (Alert status)...Currently my CD57 is still very low, but Immune Cpl have been coming into almost normal--yeah!

As I go forward in my treatment, the abx frees up the antibodies and my immune system can fight the fight it was intended to do.

I will be posting my regimen and my MRI's in July.

the best,
tory
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Postby robbie » Mon Jun 11, 2007 8:00 am

I'm sorry Chris i thought she was so messed up she could no longer dance and with her treatment that you talk about she recovered and was able to dance again and it was a miracle. I have been a .06 ever since i was old enough to have a few beers. Sorry i misunderstood you.
Had ms for over 19 years now.
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Postby Chris55 » Mon Jun 11, 2007 10:24 am

Robbie--I don't recall ever giving Suzy's EDSS score (???) Tory--I know everything there is to know about LD! Was totally convinced that is what my daughter had when she was diagnosed with MS. In fact, she did embark on about 6 weeks of LD treatment via a Lyme literate doc and showed significant improvement.

She is taking an "all natural" treatment for a strep bacteria infection with secondary fungal infection. Even tho' only a .06, she had many disabilities. She started her treatment last June and slowly she has regained pretty much all of her health. Robbie--she could not dance. If she tilted her head back, she fell...forward she was eletrocuted down her back. She had -0- balance so she could not turn. She had to pretty much "drag" her leg although not noticeable. Her left hand was numb. Her fatigue was almost incapacitating and the heat killed her. The itching in her arms (which I was always certain was fungal) was so bad the only way she could sleep at night was with frozen ice packs..and when they thawed she had to get up and get more. She had the bladder/bowel problems. This May WAS the first time she had danced in 3 years. She had college students physically demonstrating the dance moves in class these past few years.

Her worst problems, however, were the mental ones. Absolutely NO short term memory at all! Personality changes that were bizarre but did even out some after awhile.

Before she embarked on the natural treatment, her quality of life pretty much sucked. She "managed" but she did not "live". As she said when she decided to try something different: I feel like I am zipped up in a body bag!

She just finished her 2nd round of treatment for the strep (double dose this time.) She will send in a urine sample to get the status of the bacteria, ie, is it still active.

Strep bacteria is the same kind as the LD...so you know how long it can take to get rid of it. It does hide and it does cover itself in a cyst-like form. Suzy will keep taking the supplements until she no longer needs them. And if they for any reason stop working, she will try the antibiotic route or the Mino route.
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Postby Chris55 » Mon Jun 11, 2007 10:28 am

Robbie--maybe she was a ".6"--or maybe she lied to me so I would not be upset. (Although we are a "brutally" honest family.) I just know her case was considered very mild.

As I said, I did not consider her case "mild" when considering her quality of life which sucked.
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