How is everyone doing today?

Heeeeeyyyyy Cajungrl!!! :) :) :)

I just knew the aliens ( ) would return you - giggle!!!

How are you? How is the RA? I hope that you are able to keep the pain under control.

Breaking news flash for me!!!! I've actually had some quality returned to my life!!! Yeppers - after almost ten years of slipping down that very slippery slope (Whew!! that was tongue twisting to type!! - giggle!), I have actually started making real progress!!

My acu doc has been noticing signs of my improving health as well!!!

Seriously though, you have been missed, my friend. I do hope you are doing better (((hugs)))

Hi CG,

It's good to see you here again. I too have gone missing for a while, but I stop back from time to time to see who is still here. I have been continuing treatment with antibiotics and just last week completed 5-days at the infusion center getting ivig. My neuro has been strongly recommending this since my LP last January and after 6 months on abx i agreed to try it. My major complaint is still neuropathy, brain fog and some muscle pain and twitching. I have not really been keeping up with the detox because my life has been so crazy lately. I'm still trying to work full time, but not accomplishing much. We are downsizing to a smaller home and expect to be moving in early december. I'm hoping that this will allow me to take a break from work for a while to focus on getting better.

I hope that everything is going well for you and your family.

Gary

Post Edited (betterhealth) : 10/22/2010 4:23:47 PM (GMT-6)

I am having a great day, thanks for asking. Rushed around getting the tender plants out of the garden as we will have our first frost tonight. I'm a little achy but that's to be expected as I spend half of last week on the couch. I got back on my bike a couple of days ago, too! The Rifampin and Artemesinin is working!

As I put my garden to bed I keep promising all my plant friends that next year I won't have Lyme Disease again. Hope I can keep that promise!

Hi CG:
Last time I talked to you was about Bartonella. I was waiting for your oppinion and then you dissapeared! :0)

Nasalady,

I see that you have bartonella. My most constant symptom is sore soles. Do you think it is lyme related or do you think is bartonella or could it be Ehrlichiosis? They hurt when I wake up and then any time I sit down, they starts hurting again. It is not as bad as it was a few weeks ago, when I was having prblms walking, but still there and still every day. Also, my pain is something I can now handle, it is not too bad and it got better. Another symptom that seems more constant is numb arm (left) and face and hot mild burning spots on my head that come and go and move around. It is worring me more than it is bothering me. This has been constant almost every day for a couple of months. The other day I could not lift my left arm, my sholder was in pain when trying to do this. So I guess, my problems are more neurological.

I too have problems with my eyes, but this has been since I was in grammar school. Of course, working with numbers and on the computer, only made it worse. I would say that I think the pain (stabbing pain) in my eyes and eye brows are related to lyme, as this is something that did not happen before Lyme. Or maybe bartonella. My LLMD thinks I have bartonella, but I tested neg. I've been on abx for 2 mo. I will see my Lyme dr on the 2nd of Nov. I will have to remember to bring this up. I wrote all the imp stuff in a notebook, and now I forgot where I put the notebook LOL I'm sure it will turn up soon.

Trav:
Big hugs, so glad you are feeling better! What is it that is helping you and what are you doing different!

Hi everyone. I have been gone because my computer died. I started a - bab for babesia in conjunction with abx. I am hurting, but trying to keep up with the baths. sometimes that is the only thing that helps my pain.

my top symptoms are

pain
fatigue
mental health issues

what are everyones top 3?

hope eveyone has a good weekend.

I think my top 3 right now are:

Fatigue
Double Vision
Brain Fog/Memory Issues

Simela, I don't know about Ehrlichiosis causing sore soles, that may be....I was dx with HME but I think that the doxy I took at the beginning may have taken care of it. I don't think it's as hard to eliminate as the other co-infections....?

Simela, I do blame Lyme for my lower back issues....for one thing I have read that it's fairly common to develop DDD with Lyme, that somehow the spirochetes accelerate the normal aging process in your spinal disks (they LOVE collagen).

I just had the pain start one day in 2007 while I was at Knott's Berry Farm with my family. Suddenly it hurt to walk/stand. Over the next year or so, the length of time I could walk and/or stand got shorter and shorter until it was approximately 5 minutes. At that point I got a wheelchair, which I still use if I go out (I don't use it in my house, I use a walker).

Recently I had spinal MRIs done which show bulging disks that touch spinal nerves at L3-L4 and L4-L5. My neurologist still says it should not cause pain as severe as the pain I experience....but I can't help that! I just know I'm in PAIN if I walk or stand for too long.

Hey, CG, nice to see you back. It's good to hear about the gains lots of us are making. I always come back to my initial deal with the cosmos; I just wanted to be back in my life. While I am not well enough to work, I am socializing again, and sewing, and able to make a difference in the local Lyme community, so I believe I have achieved that initial goal. Now to keep going until I am well enough to work and to think I might actually have a future.

Meanwhile, every day is a blessing. Beautiful fall leaves, refreshingly crisp mornings, cozy fire at night...I love the change of seasons. What a joy to pull my woolens out of storage and to fold the wispy spring and summer frocks away until their seasons once again emerge. I know I'm not depressed anymore because lately all I can see around me are the beautiful things. Sunsets. Stars. Roiling clouds. Our ever-changing garden of blossoms. I'm loving every second! Oh, and I'm expecting a grandchild in April! Yaaaaaaaaaaa!

Rose

Post Edited (Willowrose) : 10/22/2010 8:30:27 PM (GMT-6)

CajunGrl said...
Traveler- Wow!! That is awesome!!! I am so, so glad you are doing better. Btw, you are silly and you always make me laugh:):):) I don't think any alien would want to have me for even one night, LOL.

They keep returning me too!!!

Ohhhh, man! I just have to share something that happened at my last acu appt!! Giggle!! I was laying on the table with the needles already in place, when my innerds started their usual cramping. Well, I had a few needles placed in my abdominal area, so this was getting quite uncomfortable, quite quickly, so - of course - I said something. My acu doc goes to the end of the table, grabs a hold of my big toes - - firmly and pulls gently on them. Imagine my surprise ( ) when my innerds quit cramping from the moment she applied pressure!!!

Yeah - I definitely got the giggles after that!!!


Nasalady,
I am sorry to hear that you may have to quit work. My 'last days' at work were about 16 years ago, but I haven't forgotten what it feels like.

Also, thank you so much for posting that link to Burrascano's "Sorting out Lyme and associated co-infections". That makes it pretty plain to me that I am dealing with the symptoms of a Bart-like infection right at the moment.



Simela,
I really don't believe it's any one thing that I have done while under treatment with my acu doc. I have been taking my powered ginger root, the herbs that stop my innerds from cramping all of the time and my adrenal support, doing my liver cleanses, & drinking my kefir. I have also had to start back on anti-anxiety meds. My acu doc has been working pretty heavily with me during the acu sessions, concentrating on the "weak" areas like liver/gall bladder, kidneys & such.

I have my acu "tune-up" about every two weeks and I have had enough improvement that I have been able to get back to moving around more. The whole weight gain, weight loss circle still going on!!

Your questions about Neurotin - I'm back on it for the third time since realizing that I was dealing with tbi's. It is very much for pain, specifically nerve pain. It was developed for diabetic nerve pain & neuropathy, I believe. It won't "cure" a thing, but it does help with my leg pain ( with doses of 600 - 1200 mgs/day) , where nothing else can make a difference.

I would agree with Nasalady on the sore soles most likely not being caused by Ehrlichiosis. I have some pretty intense pain in my feet 1st thing in the am & then any time after I have sat for a bit & get back on my feet. I'm pretty sure that my pain is being caused by a Bart like infection.


Merrygirl,
It's nice to have you back!! My top two issues are pain & fatigue. If I have to add any more symptoms, it's like they all start to compete against each other to see who will win that coveted #3 position!!!


It's so nice to hear of the improvements that are being made in our lives!!!!

Welcome back CG!

I'm one of your newer members on this forum, but you're the first one I think that responded to my first thread. This past weekend was my two month anniversary being diagnosed with Lyme & Co. I've been on oral antibiotics for 2 months because every time they try the test IV antibiotics, I have adverse reactions (so far to Invanz and Vancomycin). I have two good news to share with everyone to hopefully give you all something to look forward to. First, I feel like I have more energy lately. I did some things around the house I haven't been able to do since all this started. The second good news is the new combination of meds they have me on takes all my pain away! 60 mg X 1 Cymbalta + 100 mg X 4 Nucynta. If any of you out there haven't found a good combination to control your pain, try this. I tried just about every other combination known to man and was miserable every day. At least now I can think and work without too much brain fog, etc. It's hard to believe that just 60 days ago I was ready to call Dr. Kovorkian! Congrats to you all for making it this far! We're going to ALL make it together! And...one more good news. So far, I've helped 6 people get diagnosed! So I feel so thankful I was able to be that miracle in their lives. It's amazing that once you have this and read about it, you start to be very perceptive to those around you that have the classic symptoms. 2 people I helped were diagnose initially with Fibromyalgia. My LLMD told me if you bring him 80% of Fibro patients, he'll diagnose them with Lyme. I'm here if anyone needs to talk! Have a great night everyone!

Mark

Thanks Trav! Yes, I think is Bartonella, too. My LLMD and a lady that I have been in touch with from lymenet that volunteers there, said the same thing. You, and Nasalady, also.

So I will start Bart treatement soon, my LLMD said I could not do this while BF. I will see him on Nov. 2nd. and he'll probably start me on Bart. I have great hopes, bec I already feel much better after only 2mo of abx, and treating Bart will increase my chances of beating Lyme.

Simela,

I apologise for dissapearing when you had a question but like you and everyone else here, I am sick too. I also deal with RA and Fibro so some days are really hard for me to even move. I am only a volunteer so I may not be online every single day. Was there anything specific you wanted to ask me?