Today's Symptom: The Happy Meal Toy of the Day!

Spin the roulette, throw the dice. What's for today!

I am actually starting to not feel as upset about this absurd and annoying symptom roulette as I used to.

I don't feel I have the energy anymore to be upset about how "it's now this today" or "it's now this plus this" or "I thought this had gone away and was not coming back". I just don't have the energy for the anxiety and the apprehension of thinking what's going to be next.

What are your feelings about the symptoms coming and going? How have you psychologically learned to cope with it?, What is your mindset?

I am still fighting, but I'm fighting and trying to remain more rational than emotional to avoid the constant disappointments, the desperation and the intense ups and downs.

In lights of all of this agony I've learned to:

-Remind myself that it always, always can be worse than it actually is. (But it's not, so be thankful!)
-Live day by day and enjoy the present fully against all odds, you don't know what precious moments you might be throwing away and regret it later.

Keep it up everybody!

Peteza - same here, at this point I have started to shrug/laugh it off as well.

It does take a lot to get to that point though.

PeteZa, it's hard but I'm trying to get to that mindset as well. Being angry, frustrated and annoyed is exhausting. And it doesn't change anything at the end of the day.

I like this thread. I like this forum.

Warrior,
You specifically asked about our feelings about symptoms coming and going and how we learned to cope with it. I first got sick in 2009. At the beginning, I had a multitude of wild, scary symptoms unlike any I'd ever experienced. I had no known tick bite or bullseye rash, so I had no clue about Lyme disease. I went to the doctor and she sent me to an allergist because I said a lot of the symptoms felt like allergic reactions. I had all kinds of strange sensations in my face, head, and mouth; stinging in my skin like fire ants biting me; trouble swallowing; trouble getting a deep breath; rapid, pounding heartbeat; feeling like I had heat trapped under my skin; strange off feeling in my head that wasn't quite dizziness but kept me from driving for 2 weeks; feeling tremors in my insides; and as I told the doctor, I felt like I had toxic soup cooking in my insides.

I was scared, and the doctors couldn't move fast enough to suit me. I described every symptom in vivid detail with the naive faith that they would surely know what was wrong and how to make it stop. Of course, they didn't, and they did not share my urgency. The allergist simply handed me a bag full of antihistamines, Singulair, and an antibiotic and said to come back in 2 weeks. That was the scariest 2 weeks of my life!!

Of course the pills didn't help and only caused side effects in addition to the crazy symptoms I already had. My fear and anxiety quickly turned to anger and resentment towards doctors and medicine.

As the weeks went by, I gradually improved and the worst of the symptoms passed. Some of the original symptoms continued to come and go at random over the years and some never really left. For two years I lived with fear and anxiety not knowing what caused the symptoms- whether it was caused by something inside my body or something external in the environment.

As the years went by, new symptoms would appear. I wasn't as fearful then, as I knew it was because of "IT" - the mystery illness that no doctor could figure out. Fear and anxiety were replaced by watchful awareness.

Then, in April 2015, my world turned upside down again. A respiratory infection set off chronic inflammation like I'd never had before - first with asthma-like chest and lung symptoms for 4 months followed by sudden failure of my digestive system with IBS-C and reflux. Again, after full work ups, doctors couldn't find anything wrong. This time, symptoms were more threatening and the stakes were higher. Believe it or not, when this second wave of illness came, I did not realize it was the same unidentified illness I'd had for years.

Again, I went through fear, anxiety, frustration and anger towards a medical system that couldn't do what I expected it to do. Then I took a giant leap of faith and walked out the door of conventional medicine and stepped into the realm of alternative medicine and finally got some accurate answers. In a lot of ways, it's been like stepping into the Wild West. There's good guys and bad guys, a few honest men and a lot of snake oil salesmen.

In the last year as I've learned about Lyme and mold (which I also suffer from), I have been on an awful ride where symptoms go up and down and round and round in a never ending parade. I have done all the things many others have - got scared to the point of hysterical crying, gone through moments of overwhelming despair, freaked out after reading horror stories of others' experiences, laughed out loud when reading others' sad tales, not because I was making fun of their suffering, but because I could relate to their experiences.

Most of the time, I laugh and find humor in the bizarreness that is chronic Lyme, but I don't stop myself from crying when I need to. I've lost a lot of emotional inhibition, and I'm inclined to think that's a good thing. I still have a long way to go towards recovering my health and towards growing emotionally, socially, and spiritually. I am changing, hopefully for the better. Suffering through this has given me a depth of compassion and understanding for others that I wouldn't have otherwise.

I'm trying to take the symptom fluctuations in stride more and be less obsessive about trying to figure out what is causing each symptom or flare. As I gain small improvements, I find it naturally gets easier to sort out.

Now that I've said all these nice things, tomorrow I'm probably gonna have some crazy flare that I can't figure out and start obsessing again😄 LOL!!!

I would really like to get to the point of staying positive and thinking good thoughts. On good days I manage, but on my bad days I can hardly focus on anything but my illness.

The symptoms coming and going are really distressing. I'm so glad when some symptoms disappear or lessen, and every time I hope they won't return. They do of course, but in the back of my mind I knew they would of course.

I'm a bit curious about the coming and going of symptoms. I've read many places that they should operate in cycles of approximately a month. That is not the case with me at all. It seems different all the time. I can have 3 good days with normal heart rhythm, less twitching and chills etc, and I can have 1 day, a week or whatever. I have no cycle that is mentioned many places. Do you have this same lack of pattern or is it just me?

I don't have any identifiable patterns either.

Maybe I have more infections than I know about and the patterns overlap so they're not detectable???

RedLabel- Have you considered investing in a PCR test that is slightly more reliable?

RedLabel said...
Good to hear. I get frustrated sometimes and start to doubt that it's really lyme I have. I only had an equivocal elispot (LTT) and negative elisa and WB. When things don't seem to fit the "bill" it stresses me even more as I don't want to treat the wrong thing.

RedLabel - all of them have a certain degree of unreliability, but among the least unreliable is the PCR test. Buhner explains this too.

DNAconnexions ships the kits outside the US and receives them from outside as well. If you need more information you could write them to their contact email that appears on the their website, they reply promptly.

I didn't get a report of every band, but they said none were positive after I called them and complained about the report I received.

Lyme and CDN was mild positive on LTT the first time, but negative after two months of treatment.
Yersinia (LTT and antibody), coxsackie (antibody), CMV (LTT) positive tests.
Bartonella was clinical diagnosis, but in addition my naturopath was quite sure she saw bartonella in her microscope.

RedLabel said...
I would really like to get to the point of staying positive and thinking good thoughts. On good days I manage, but on my bad days I can hardly focus on anything but my illness.

The symptoms coming and going are really distressing. I'm so glad when some symptoms disappear or lessen, and every time I hope they won't return. They do of course, but in the back of my mind I knew they would of course.

I'm a bit curious about the coming and going of symptoms. I've read many places that they should operate in cycles of approximately a month. That is not the case with me at all. It seems different all the time. I can have 3 good days with normal heart rhythm, less twitching and chills etc, and I can have 1 day, a week or whatever. I have no cycle that is mentioned many places. Do you have this same lack of pattern or is it just me?

The monthly cycles maybe for Lyme - but the coinfections don't have that cycle.
For Bart I've read 3-4 days and also 24 hours - there doesn't seem to be a consensus.
Babesia - I can't recall - but my flares used to be every late afternoon/evening - now they're more random with a better day every 3-4 days.

You're right on that front.

A PCR does not show false positives because of cross reactivity though.

If a PCR shows that you have any of the infections you can be certain that you have it.

I wouldn't recommend it as a first test in case it throws false negatives, but for someone like RedLabel who wants to verify after a WB, I think it's worth the shot.

Girlie said...

The Warrior said...
RedLabel- Have you considered investing in a PCR test that is slightly more reliable?

RedLabel said...
Good to hear. I get frustrated sometimes and start to doubt that it's really lyme I have. I only had an equivocal elispot (LTT) and negative elisa and WB. When things don't seem to fit the "bill" it stresses me even more as I don't want to treat the wrong thing.

The pcr isn't more reliable than the WB.
This is why the Igenex WB is still usually used by the LLMD's.

I think that Armin Labs is getting more popular recently.

The pcr is more specific but less sensitive - a Dr told me.

With the Igenex WB even with a negative result- there are often positive Lyme specific bands that indicate you have LD

A negative pcr won't show you anything.