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INFO-JUNKIE's Photo INFO-JUNKIE Posts: 1,522
3/11/12 12:16 P

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Had a major crash Friday because I over-did it with my exercise. A Lyme-style reminder that I can't push it like 'normal' people can. I'm a little bit better today (Sunday).

Other than that, I am doing better than I have been in a long time. I started abx in December 2010 and it took until October/November before I stopped getting worse and started to see some improvement. I am still on abx (prescription and 'natural'). Since I was undiagnosed for over 30 years, my original LLMD said I'd need to be on them for a long time (years). We'll see what my current doc says later this month.

I am sorry that you have been having such a hard time. But remember - if the meds make you feel worse, that means they are effective and eventually you should begin to improve. emoticon to you!!

~Connie~


Losing weight is hard. Being fat is hard. Choose your hard.
~~ author unknown



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NMBUTLER Posts: 1,201
3/11/12 12:24 A

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Hi Connie:

I am sitll here, been very ill. On treatment- Mepron and Arithromycin for Babesia. Cannot always drive anymore or do much.

How are you??
Nancy

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INFO-JUNKIE's Photo INFO-JUNKIE Posts: 1,522
3/9/12 5:52 P

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Is anybody here?

~Connie~


Losing weight is hard. Being fat is hard. Choose your hard.
~~ author unknown



 current weight: 217.4 
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INFO-JUNKIE's Photo INFO-JUNKIE Posts: 1,522
1/28/12 4:45 P

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Hi Nancy - Hope your sinuses are feeling better by now and your flare has passed.

I am on thyroid, but keep having problems with it. My levels are still not up enough, but when I take it, I have more PVC's (Premature Ventricular Contractions). We keep adjusting it - next appt is next week so we'll see.

I am on natural and regular at the same time. (for over a year now) It is a very slow and gradual process. I am S-L-O-W-L-Y improving. I cycle my prescription abx so that we keep changing it up. Seems to be working, but I am FAR from normal... not even back to where I was just a couple years ago when I started worsening much faster. (I was infected in the late 70's, but not diagnosed until a year ago - so I was on a slow decline for over 30 years.)

I have hope though, and that is good.

emoticon to you and to all the other lymies out there!

~Connie~


Losing weight is hard. Being fat is hard. Choose your hard.
~~ author unknown



 current weight: 217.4 
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163.75
135
NMBUTLER Posts: 1,201
1/11/12 12:28 A

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Hi Connie:

Soo nice to hear from you. I feel awful- sinus infection for weeks and flare big time in lyme symptoms- horrid fatigue, pain, headaches, etc..

I do not think my thyroid dose is high enough so that is contributing to things since I only have 1/2 A THYROID NOW.


Do YOU HAVE THYROID PROBLEMS??


are YOU JUST ON NATURAL ANTIBIOTICS OR ON REGULAR AND NATURAL?? WHICH HAS WORKED THE BEST FOR YOU.

Take Care AND STAY IN TOUCH

NANCY

 current weight: 140.0 
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INFO-JUNKIE's Photo INFO-JUNKIE Posts: 1,522
1/7/12 11:14 P

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Hello fellow Lymies - How is everyone doing?

~Connie~


Losing weight is hard. Being fat is hard. Choose your hard.
~~ author unknown



 current weight: 217.4 
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163.75
135
INFO-JUNKIE's Photo INFO-JUNKIE Posts: 1,522
12/8/11 1:40 P

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Hi Nancy,

It's Inform55 here. (I changed my name to Info-Junkie.)

I have definitely had lyme since a bullseye rash in 1987, but have had progressive symptoms since having mono in 1979. I was diagnosed a year ago. I am in my late 40's and have had this all my adult life - I don't even know what I'd be like as a healthy person.

I've had the usual, Epstein-Barr and HHV6 as well as mycoplasma. I tested negative for one of the B's (Bartonella or Babesia) and will find out the results of the other next week.

I've been on a rotation of abx for the last year and the first 5 months were horrendous, but I seem to be S-L-O-W-L-Y improving since then. Because of the rotations, I can get herx reactions any time I switch abx. Began seeing a new dr in September and in October, he started me on some 'natural' abx (Samento with Banderol or Cumanda). I am upping them by only 1 drop at a time and often notice worsening of symptoms for a day or so when I increase them.

I read, read, read like crazy and have a whole list of questions for my appt. next week. I may not get a chance to ask them all because we will also be going over blood test results. One question I have is about metal toxicity. I want to be tested for that - a friend with similar symptoms has had Excellent results from chelation therapy.



~Connie~


Losing weight is hard. Being fat is hard. Choose your hard.
~~ author unknown



 current weight: 217.4 
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221.25
192.5
163.75
135
NMBUTLER Posts: 1,201
12/6/11 11:16 P

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Connie:

Nice to hear from you!!! I have never had a spect scan but did have an MRI of my brain which showed white spots and narrowing of little blood vessels and I have neurological issues too. I was mis diagnosed for 8 years and am now on my third lyme doc. I am in my mid 50's and have not been making much progress with getting rid of lyme and co-infections. I did not test positive so it was a clinical diagnosis.

How long have you had lyme??? any co-infections?? any treatments that have proven helpful??

Stay in touch.

Nancy

 current weight: 140.0 
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INFO-JUNKIE's Photo INFO-JUNKIE Posts: 1,522
12/6/11 6:38 P

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Hi Nancy - So glad to hear that your thyroid surgery was benign! Such good news after such a rough year.

I started with a new dr. this fall and have my next appt. next week. I'll get some test results then. I think those appointments are always the most interesting and look forward to the treatment changes/tweaks. It always give me hope and feels like I'm making progress.

In Sept. I had a brain scan (SPECT scan) and it showed significant abnormalities in the blood flow in my brain. (some areas had very little blood flow) It validated my neurological complaints and is a benchmark for treatment.

emoticon

~Connie~


Losing weight is hard. Being fat is hard. Choose your hard.
~~ author unknown



 current weight: 217.4 
250
221.25
192.5
163.75
135
NMBUTLER Posts: 1,201
11/28/11 6:19 P

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Sorry for the absence. If anyone would like to be a co-leader please e mail me.

I have been thru 7 biopsies and 3 surgeries this year so it has been rough plus still battling chronic lyme.

1 week ago I had thyroid surgery which Thank God was benign.

How are all of you. Update me and others.

Hugs

Nancy

 current weight: 140.0 
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