Need your support....ideas? having a bad time.UPDATE

I'm having an awful time...I don't know why.

relevant background: I am on a maintenance schedule (even though I'm not symptom free yet).
I take meds one week per a 4 week cycle.

I finished my meds a week ago Friday. I herxed that night with a fever, body pain and rapid pulse.
I expected it to slowly dissolve over a few days.
Saturday morning woke up and felt great...all day...no pain...no head pressure.......
I thought I've beat this thing. This is wonderful.
I went to Costco with a friend - came home - had a great evening....

nope. Sunday woke up with bad pain...including a new symptom. I have pain that's hard to pinpoint. it's kind of between my right ear and my jaw. It's a pulsing pain.
Plus my ribs are hurting...and I have bad head pressure....oh and my back hurts a lot...

I have not taken any meds since last Friday.

So, what's happening to me?
Is it possible that its toxins? Could After the good day Saturday...is it possible the toxins built up again on Sunday...even though I haven't taken anything to kill the infections?

I can't see it being a worsening of the infection(s) - because it came back so suddenly Sunday morning..

I'm a mess. My husband came home briefly for his lunch break....and saw I was in my pajamas still...and he remarked that I probably hadn't been to the pharmacy yet. (I had mentioned last night I needed a few things)
He drove away...and then came back 20 minutes later with the stuff we needed. I feel guilty...he's running around on his lunch break...and I'm like a vegetable at home...crying...

My mind isn't handling his well. I'm so done with this crap. I have no confidence....I'm thinking awful thoughts - like my husband should just leave...and get a better life......it's no life for him....

I just needed too vent... and you are the only people who really know what it feels like.

Girlie, sending you virtual hugs!

Wouldn't it feel easier somehow if we always saw the connections between symptoms and triggers? It's so hard not to get stuck on wondering why all the time, as though if only we can figure it out, then it will not happen again! There are just so many factors involved.

This time of year, I feel like a lot of us crash in some way regardless of where we are with treatment. Maybe we push too hard, maybe there's something about the moon or the leaves or the sunlight. Sometimes we are exposed to a virus that whacks us out neurologically for a week or so even if we don't develop classic symptoms. I wish we all had the answer, but after all that you do for others - on this forum and in your personal life - I especially wish that for you!

Your husband has the privilege of being healthy enough to run an errand today. Just as with any type of privilege, it's the responsibility of people who have it to help the people who don't. I believe in this strongly, and I believe that it applies to those of us living with chronic illnesses. Fight tooth and nail against internalized ableism. You are enough, sick or not. You are just as valuable to this world as anyone else is.

We're all crying vegetables sometimes. Go easy on yourself. This is temporary. And we all know you can do hard things.

I never know what to say in these cases but I do know that you are a wonderful person who helped me a lot and it's frustrating that I can't help you except to say that I care.

I agree with Lightlife. Don’t try to pinpoint this. This is a question for Dr. J.

I am so sorry for what you’re dealing with right now. Try not to let your mind and emotions run wild. I know that’s far easier said than done. If your next appointment is far off, can you contact the office about what happened and your concerns to ease your mind?

Thank you all for the kind words and compassion.
You have really helped me get through this mini crisis.

Notime4Lyme - I hope you have a better day tomorrow. I listen to music a lot - it does help - but not so much today.

saraeli - thanks for the hugs! Yup - I’m always poring over my notes - trying to see patterns... but unfortunately it isn’t adding up this time.

Lightlife - thank you for the hugs - and yes I would do the same for my husband - in a heartbeat.

Astronomer - you are helping - you’re part of this great group here and your words are appreciated.

ElizaKA - I’m trying to just chill now and see what tomorrow brings.
A massage? I’ve never had one - no joke. Maybe it’s time I did!
I’ve never had a Myers Cocktail or IV glutathione - there’s prob a ND here that wouid provide that service.

WBF - thanks - I think I will call the clinic Monday - my next appt isn’t until March. There is a nurse triage line I can call - I think I have only called it once in the year and a half I’ve been a patient.
I will call on Monday.
It’s important information - maybe they will want me to bump up my treatment.

Thank you Mariesh - I’m certainly venting here - gives my hubby a break lol.

Unsightly C - (where’d you get that name? Lol). I’m lucky to have my husband - not sure how I’d cope without him - really. Poor guy


This has got to be the greatest group of people - right here! I fell apart today and had you all to vent to - thank you thank you -

I am feeling better now - hugs to you all!

Hope & pray you're feeling better today, Girlie. So sorry to hear that you're suffering so much. Glad your husband's supportive. You'd do the same for him if the coin was flipped, wouldn't you? 'In sickness and in health.' Meditation helps me and the breathing exercises are helpful. I learned these from reading about both Buddhist & Hindu techniques & watching Indian yoga videos(in English) meant for children. Pranayamas. You're a good, kind hearted person that helps many others. (you help me, too!) You deserve the same in return. Take good care.

I'm doing better today, I hope you are doing better as well. Setbacks are so discouraging, but maybe a turn for the better is around the corner.

"I have pain that's hard to pinpoint. it's kind of between my right ear and my jaw. It's a pulsing pain."

not sure if its the same for me, but I had that and it was a herx. I had it a few times. The first was vics vapor rub below my ear and around my neck and back side of my head. I felt a "lightening bolt" or "static cloud" like something got hit really hard. Then on and off jaw-ear area pain. I kept putting vicks vapor rub on that spot.

I think its the lymph node getting overloaded and spilling the disease out. It drains out still alive infections and they just end up there in higher concentration.

two things 1) Take iodine to fill up the lymph node with "the good stuff". I believe Potassium IodIDE is given to citizens around nuclear reactors in case of an emergency so that they can prevent radioactive isotopes from building up in their lymph node. I use Lugols Iodine , note the IoDINE, 2%
2) put some kind of vicks vapor rub, eucalyptus oil, camphor, or oregano oil (it stings and you will smell like pizza) in that area twice a day. It'll slowly work its way into the area and any infection that ends up there will find out that's a no go zone.

so I ended up putting vicks vapor rub on every night before going to bed in this area for the last few months. I bought all of them at the store. I thought I was on to something and bought more high end essential oils and trying to make my own, but I'm not quite sure if it I have the strength (drops per 10ml) right and the vapor rub just works.

again I have no idea if this will help, but this is what I did

Girlie,
Please don't lose confidence, we are going to get better someday.. so many researchers, llmd's, ilads, so many people trying to figure it all out.

Yes, we are still having symptoms and herxing but each time an event like that happens, maybe another clue, or another step forward after our bodies settle down from the toxins.

You have come so far, I have come so far,
and I understand how you are feeling, even though so many of our symptoms have been knocked back and we have progressed, it takes just one bad herx or new symptom to bring us to that place of questioning and despair.

Gather strength from all the people here on this site, confide in and talk with your husband about how all of this is affecting you both. On good days let him know how you appreciate him and how he has stood by you throughout all of this.

Remind yourself everyday that you are strong, smart, kind and compassionate. A good wife, mother and friend to others. You are important Girlie. You matter. You have made an incredibly huge impact here and touched so many lives.
I hope you keep moving forward and have a bit of sunshine and joy in your life everyday.
Take care

ElizKA26 said...
Hugs to you Girlie! Wishing you a better day tomorrow! ❤️😊

It is a lot better today ... ❤️

UnsightlyCignet☄️ said...
The Ugly Duckling, Girlie, that's me lol. We'll all get through this. Hugs.

Lol - silly me - that’s a great name!

sandyfeet said...
Oh Girlie! I’m so sorry you’re experiencing this mysterious setback!

I know we’re always hard on ourselves at these times but please don’t be. You do _so much_ to help everyone here and that is such a gift. Thank-you from the bottom of my heart. When we tend to help a lot it can be really difficult to receive without feeling guilty but it truly is a gift we should learn to embrace with grace. It’s an expression of love.

And warmest hugs. You will get through this and there will be better days on the other side and we are all here rooting for you until you do.

Wishing you a better day today and going forward.

Boy did I need the hugs yesterday - and today is much better - so grateful for that.

🔹RainyCloud said...
Girlie any updates today?

I am feeling better today - I am going to call the clinic tomorrow