I've been gone for awhile but still here. When I left I was very suicidal and paranoid. I deleted two of my threads because I'd spoken about some PTSD and started worrying that those people involved would see it and come after me...
I've found out that I've been having neuro-herxes and it's causing a lot of that for me.
My weight is very low- between 105-108 now. I've lost 75lbs so far since December and I'm eating constantly. I have had trouble recently doing simple things like making my own food and brushing my hair. Also becoming paralyzed for hours with seizures.
I think my ND is at his threshold with me. I've been trying to do this all naturally, but I don't know if it's possible.
My husband made a fundraiser and we got a little bit of help so we are trying to get in with Dr. K or a place in Mexico called Hope Wellness. If anyone has experience with those, would you mind pm-ing me?
I was involved with the Lyme protest in Kansas and the advocacy group for a few months. That was good to do- and met a lot of nice people. My husband filmed the event for the Under Our Skin update. I am glad to see all the articles and activism posts here too.
Anyway, I just wanted to say hi. and let you know that I'm here lurking again. It's hard for me to type now, so I might not answer things quick or very well.
Posts: 428 | From Midwest | Registered: Dec 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Good to see u. Sorry u r having troubles. It sems to me u need very experienced llmd at this point. Have u decided not to use the llmd in mo. I would be careful of mexico. Not sure which dr k u are talking about. Take care
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Hi daynise!
Glad to see you posting again. Those neuro-herxes can be a nightmare.
That's great that your husband was able to fundraise for you! I tried it myself and literally raised $20.
posted
Good to see you back! Sorry to hear that you've still been having a lot of trouble!
I would be leery of Mexico too .. for various reasons!!! Getting across the border can be very dangerous. You can also get stuck there if you become very ill and end up in a hospital.
I've heard horror stories. Since I'm from Texas, I've heard it all!
I think what kayak was saying was more concern about the type of medical treatment there. A lot of Drs go down there just to make money off of those in the USA. They can have some dangerous treatments.
Dr K in WA would be the better choice.
Thanks for the site! It's a great idea!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Welcome back, Daynise. Sorry to hear you are suffering still. I was hoping you were one of the lucky ones who got all or part of a life back.....
I'll take my physical pain over the neuro flares any day. No one who hasn't been through it can understand. Our family on Lymenet does.
I can't post much either, but this site welcomes me back every time. It's nice to know there is a place to come when all feels lost. You know we understand and will stand with you.
I feel like folks here are more understanding than my family who sees how I am, and ignore it b/c it just goes on and on....
Posts: 867 | From PA | Registered: Jan 2006
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We got in to see Dr. K in WA in two weeks! I can't believe something is finally happening!
We did try to see an LLMD that's new here in my state and although she is VERY thorough and nice, we can not afford the care and they can't do IV treatment yet.
I didn't end up going to Dr. C because we heard from people in the advocacy group that he doesn't like to do IV either. It's not their fault at all- it's the politics and lack of supportive medical professionals if something went wrong. I understand completely, but I need something aggressive at this point.
So maybe both these docs would have been better for me to see earlier on when my gut could handle orals...
Thank you for the Mexico warnings! It was appealing because the ND has good reviews but it would be a hardship on us to deal with the border.
So my inlaws are trying to get an RV for us to go up in 2 weeks to see Dr. K. I've been waiting soooo long for something to happen, it's hard to believe it is!!
Honestly, I've been preparing to die in this time I've been away. Tying up loose ends, packing up my things, getting my will ready, advanced directives, etc. I just saw no way of beating this with the resources at my disposal and the quickness of the illness. I have no insurance, no primary care doc, etc.
My ND is AMAZING and I believe he's helped me hold a line here. And I'm fighting really, really hard.
Ok- a couple things to share- if you have not tried removing EMF from your home, I HIGHLY recommend it. Just turning off 2 breakers and getting rid of wi-fi helped my pain immensely. I mean it was unbelievable the difference.
Also, my husband has tested positive for Bart and is in treatment. So, there's that... but my ND has him on the strongest meds before Byron WHite and he is barely feeling the herxes so I think I got him help he needs. I pray.
Anyway, thanks for responding. I am feeling a little better this morning and happy to be back to talk with you guys!!! Posts: 428 | From Midwest | Registered: Dec 2012
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
YAY!!! You got in to see Dr K! You will be in excellent hands. I would LOVE to be able to see him someday.
So sorry to hear that your husband has Bart. Thankfully you got him in treatment.
I'm glad you are hanging in there and haven't given up. There is hope!
BTW, hopefully in Oct you will be able to sign up for the health insurance that's a part of healthcare reform. Then in Jan you will be covered and not have to have that additional worry.
posted
Maybe it would help when you are neuro-herxing to remember, or make a note on the refrigerator or keep a journal reminding yourself that this is a herx and you will feel better when it's over.
Glad to read that you are better and back here.
I was declared '8' on the expanded disability scale--'10' being dead. Am better now and able to look back on that and see that it was not permanent. A journal recording everything including your good days might help you not to give up.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
nice idea sheila
daynise-so glad you can see dr k that is only a dream of mine
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
We are getting ready to go soon and things are crazy!
I had to have a panoramic xray of my mouth done for my visit at Dr. K's and I had a massive seizure because the dentist I go to (since childhood) is not in a MCS friendly building. I felt like my skin and eyes were melting and I was choking.
My dentist was absolutely terrified and I am exhausted. We had to buy a walker chair this morning just so I could get through the dentist building without collapsing. but the walker chair will come in handy on the trip for sure since I can't walk very well anymore.
I feel like I am in a dream...
My inlaws BOUGHT an RV so we could be comfortable for the trip. They have stepped up so much and are pretty much financing this (them and the help from my fundraiser). They say they took too long to understand what I was going through- (but to be fair, even I was in denial for years)- and now they are fighting to get me better.
I'm very grateful and in awe. I've been so alone for so long and so hopeless. Everything is coming together now and that means it will be a good trip.
I keep trying not to second guess my decision of going to Dr. K. I am so afraid of failing that I sabotage myself and now I just have to do this and be brave. They know what they are doing right?
Anyway, I'll try to update what happens as I can!
Posts: 428 | From Midwest | Registered: Dec 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
no second guessing...if you can pull it off do it.
and as for those in laws...i dont know...so many neg things on here about friends and family...they are very very special...maybe we should all thank them in another thread and you can print it out for them...they are a gift...a special gift...and it came to you for a reason...heres to a better future!
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Oh my gosh Ipkayak! If you did that they would be so touched. that's so awesome that you said that Their names are Nancy and Floyd. They are more parents to me than my parents ever were- took me in when I was homeless, helped us all through the years, and now trying to help me beat this awful illness.
Ok, I'm not second guessing. I'm going to do it. Thanks guys for wishing me well. Posts: 428 | From Midwest | Registered: Dec 2012
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