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

oregonhay said...
"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

goshawk said...
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...
Hi Girlie,

Glad today was a better day & glad you're calling the clinic for peace of mind.

There's nothing worse than facing an alarming health setback during a weekend or a holiday. Your left w/your anxiety ridden mind and your physical symptoms to fend for yourself and that is debilitating in it of itself!

It would be nice to have something therapeutic to complement your protocol. Like restorative yoga, massage, or IV's. I have been able to do this, not always, but it's helpful. Whatever you may think or feel at the time, you're enough!

If there was something you/we could do about our lot in life, we'd do it, and we wouldn't be in this predicament. You are here for a reason, we all are. You didn't cause this, you're doing the best you can under very challenging circumstances. You are to be commended!

Thanks for reaching out! Best wishes for a better week!

Zimica said...


It's the worst when we're not feeling well physically, and then as if that wasn't enough, we get caught up in the loop of despairing over our lives altogether and dreading what future holds... I've done that numerous times, I just can't remember that it's not the best time to think about ALL the other issues in my life when I am unwell lol. I guess it's just that illness-induced pessimism and fear, and the subsequent feeling of guilt and misery that we cannot escape.

Zimica said...
I am glad you are feeling better Girlie!

When I saw your symptoms it was as if someone was describing me, pain that is hard to pinpoint between ear and jaw.. That's become my 'signature' symptom. I feel it's linked to lymph nodes, I don't know, especially because when I am feeling rough I also get a lot of pain in the armpits, breasts, pelvis. Then all the other stuff, head pressure, ribs, lower back (in my case). Funny how these different infections really do cause the same symptoms.

It's the worst when we're not feeling well physically, and then as if that wasn't enough, we get caught up in the loop of despairing over our lives altogether and dreading what future holds... I've done that numerous times, I just can't remember that it's not the best time to think about ALL the other issues in my life when I am unwell lol. I guess it's just that illness-induced pessimism and fear, and the subsequent feeling of guilt and misery that we cannot escape.

ElizKA26 said...
@Girlie, don't stress yourself about any of my suggestions, and I'm with ya about the yoga. I do the exercises in the comfort of my home so no one sees me stumble! ;)

Look up restorative yoga poses online.

Just know that you shouldn't feel badly or guilty for something that's out of our control. Your body checked out on you, you didn't check out. Now I know we still feel badly bc we want to be normal, but it just ends up making us feel worse.

I know you feel guilty about your husband, I do the same about mine. They're both so supportive and we feel guilty bc our families deserve better. Just remember, though we deserved better and we've gotten a raw deal.

Remind yourself "I'm enough, this is my illness, not me, I'm gonna do what I can not what I can't."

Snorkelfish12358 said...
I'm sorry to hear you're sick. Bad days never get easier just because they happen often, you know?
Maybe there is something that triggered it. There are so many things that can, especially foods and herbs. Stevia, fake sweeteners, garlic, onions, ginger, spices, getting too hot, exercising a lot, a new medication, so many things could cause it. It might be one of those things. For me, finding a reason why helps me to feel less crazy and like there is a reason for whatever is happening. But if you can't, tell yourself that tomorrow will more than likely be better.

MA10 said...
Girlie, just chiming in to say rest is important. And sometimes our bodies have a way of making us slow down. That happened to me this weekend. I had fun on Friday night, thought I was doing well, and then crashed hard. I didn't think I was tired, but my body knew. Your body is doing its job, even when it doesn't feel like it. It might be the bugs causing your new symptoms, but I wouldn't get discouraged. You have an excellent doctor, and he will get you through this. You always have support with us.

Lymie24 said...
I have no advice on your symptom profile, but I completely understand where you are coming from on your thought process.

My wife and I were in our late 20s when I got Lyme. We had only been together 10 months. Those 10 months were awesome!. We were both working. We went on trips. We hung with friends almost every weekend. We ate, drank, and were merry. We would drink margaritas and talk about what we wanted to do in life. I got bit in July 2015, but it wasn't until November 2015 that Lyme beat my immune system and the debilitating lifestyle began. I know realistically this isn't my fault. I still feel guilty though. It's been 4 years and our life just isn't even close to the same. It's depressing sometimes. Sometimes I wish she would leave and enjoy her life. No need for both of us to suffer. She won't leave though lol. Thank your lucky stars you have someone who loves you so much they will stick with you through thick and thin.

Girlie said...

ElizKA26 said...
@Girlie, don't stress yourself about any of my suggestions, and I'm with ya about the yoga. I do the exercises in the comfort of my home so no one sees me stumble! ;)

Look up restorative yoga poses online.

Just know that you shouldn't feel badly or guilty for something that's out of our control. Your body checked out on you, you didn't check out. Now I know we still feel badly bc we want to be normal, but it just ends up making us feel worse.

I know you feel guilty about your husband, I do the same about mine. They're both so supportive and we feel guilty bc our families deserve better. Just remember, though we deserved better and we've gotten a raw deal.

Remind yourself "I'm enough, this is my illness, not me, I'm gonna do what I can not what I can't."