Update- it's been a while

Hey everyone,

It's been a long time since I've posted. I've been dealing with some serious disconnection. I can't remember what was going on last time I was here.. Anyway.

I'm still having a lot of mast cell issues. I've had to come to terms with the fact that for now getting back to 100% is unrealistic. It leaves less room for stress if I think this way right now. As long as I survive every day and get more time with my family I'm happy.

It's really frustrating at this point. In the last 16 months since I was first diagnosed with Lyme all I've seemed to do is acquire additional diagnosis. I've had minimal symptom relief and acquiring more of those as well. It just gets more strange as time goes on.

I'll take my antibiotics and herx, then I start to feel better. I think yes! This is how treatment is supposed to work! And then around the 3-4 week mark out of nowhere I have a huge allergic reaction and have to discontinue all medications. I lose all ground and have to start over. It's a vicious cycle I've been stuck in. I'm so tired.

As disappointed as I find myself right now with 20% of my body bleeding covered in sores, I cling to hope that one of these times we will find something that works. So many times I've been convinced that it can't get any worse and been proved wrong. Human resilience is astonishing and powerful. My hope is that someday we will understand this illness well enough to alleviate all the suffering. Until then it's all just a guessing game..

I'm not sure if the sores all over my body are from a fungus, mold, or mast cell. My feet have these big hard bumps all over them and they hurt terribly. I have 4 vertebrae out and 3 ribs out. I got a hernia from puking like the exorcist. I've lost even more weight leaving me a pathetic 90 pounds. My headaches are back. The worst is the anxiety and disconnection. Mentally I'm not all here. I was talking with a friend about how I feel this is a coping mechanism. It's too painful to be fully aware right now. I'm back to having drenching night sweats. I wake up every morning soaked in my own blood and sweat.

I try to convince myself that this will all be a memory soon enough. And I guess I believe that. I live in fear constantly. Anaphylaxis is no joke. And still no one can tell me exactly what's triggering it. I've been on Iv antihistamines for months. It helps but this is no way to live long term.

Don't give up fellow sickos. If I can roll out of bed with all of this going on and find things to be grateful for you can too. Believe me I've barely scratched the surface here. It would take me 6 years to write out everything that is wrong right now lol. I've quit fighting recently and opted to try and go with the flow more. It's easier this way. Dealing with so much physically a lot of my energy gets eaten up and I feel I have little time to ponder.

I am so looking forward to warmer weather. This cold really does make my bones hurt. At the ripe age of 26 I feel like I can understand why people in their 90s move the way they do lol. I hope you're all doing as well as you can. Take care and be kind :)

IHL

I am my usual speechless when I read posts that touch my heart so deeply.

You are a warrior - no doubt about it.

And, you are an extremely special person to come on here to encourage everyone. Perspective is everything.

You remain in my thoughts and prayers......and gosh darn, you have been VERY long overdue for a break. I pray it's around the corner.

Rikky1 so sorry for your sister in law. Glad she is getting help.

I don't go there, but I read everything!

Co inky dink

Hi All,
You may not know that I email with IHL a lot, so I know a lot of what's happening and feel like I can post a few things.

IHL has severe issues with MCAD as well as having these infections/viruses. She uses herbs and abx in order to try to treat, but each time she ends up with a massive set back as she described. It is assumed she has at least the 'big 3' - Lyme, Bart, Babs - but it's the MCAD that prevents her from treating for more than a few weeks.

She has had to have a PICC line installed because of severe digestive issues also.

Any of us that have been following her for long know that she's an incredibly strong lady, but she is severely ill (which is why we don't see her much on her any more), and struggling to find some answers. She's seeing a good LLMD, but her issues are staying one step ahead in most every area of treatment.

Please keep the kind words coming for her as she is one of our sickest members and is trying to raise a little boy as well.

Hang in there, IHL!! We are with you!!

Oh my gosh my heart just breaks and it is humbling. Makes my whining seem pathetic.

Prayers IHL!!

Hi IHL!-

OMG!!! For all the pain and suffering that you have gone through and continue to go through!

Is there any doctor (chiropractor) that you could see to help with your ribs and vertebrae being out of place. Or would it be too painful for a doctor to manipulate it back into place? Since you have so many open wounds this might not be an option for you right now?

And to end up with a hernia from the constant vomiting! I am left speechless!

Does your doctor have any thoughts about the painful bumps on your feet? Or is this another symptom of MCAD?

I am very concerned about your open wounds. Please take good care of these, because I don't want you to end up with another infection.

I will pray for you and your doctor to find the right treatment combination and to heal your body and mind!

Sending you many many ((((HUGS!)))

Thanks for this.

I can't quite find the words to properly explain why I'm thanking you, which pains me, because I'd really like to say.. for you, and me. But, I just couldn't do it justice.

I'm sorry you have to suffer so, and I wish it didn't have to be, but thanks.

~<3

Hi Nosila, '
Since I talk to IHL almost daily, I'll make sure she reads your post with the suggestion of Rife. If I'm understanding correctly though, Rife won't be much different, since with MCAD like what she's dealing with, it's the die off that she's reacting to, not the treatments themselves - but as I said, I'll be sure she read this.

Thank you all for taking your precious energy to share such kind words with me. From the bottom of my soul, thank you.

I've had a really bad 6 weeks or so. I want to give up right now and just wither away. Coming here and seeing this made me eyes well up. I'm trying to be strong for my family and get back to being a mother to my little guy.

I'm exhausted. I never thought life would feel like this. Good thing that the only constant is change. I'm just waiting for my hand up still.

I'll try to stay in touch. Thanks again :) traveler keeps a good eye on me so you can always ask her about me.

IHL~I know the MCAD issues complicate everything--& you have implicit confidence in your doc, but can he discuss/co-op with Dr H (who is using the special abx combo pulsing---which again may not be a fit for you)?

I really thought no news was good news for you-gosh darn! But even so, you are a wonderful dear for sharing. You are always in my thoughts. Sending love & hugs your way. Xjo

IHL:

I don't know why you are going through this. Maybe God chose you because you are stronger--certainly many of us would lose their mind if they would go through what you are going through. I am sure is rough, but you manage somehow to always put a step in front of the other and go on. You are an inspiration and you give us strength. Everything happens for a reason and we all have our road to walk on. And lets remember that even terminal ill patients often recovers. Please don't give up hope, keep fighting, there must be something that will work for you, you just have to keep trying.

I hope you got a chance to discuss with your doc about the herbs I mentioned to you that treat MCAD. I will certainly let you know if I run into any more herbs that deal with it.

Hugs and don't forget we care for you deeply, I think all of us think of you often, wondering how you are. One day you can write a book about it. You have plenty of material from your past posts write here on the forum!