Hey, it's been forever! I miss you guys! Update 😉

Hey! I hope you are all doing well, or at least having brief moments of relief.

I'm low on energy, so I'll get right to it.

I'm waiting on test results from fry labs and Dna connections. The new urine test from dna connections sounds promising as it looks for the bacteria and not antibodies.

In the meantime my doctor is sending me to a neurologist. Some of you know I've been having a hell of a time with mast cell issues. My brain swelling has been out of control, maybe due to lack of treatment. In the last year I've only completed maybe 4-5 months of treatment for Lyme. The reactions are so severe it's not worth it to me to end up back in the hospital on steroids. It began to feel counter productive so I just threw the towel in.

I'm being sent 6 hours away to the university hospital to have a full nuerologic work up. My doctor seems to think I might need surgery for something called chiari. Basically my brain is clogging the opening in the back of my skull and not allowing good flow of cerebral spinal fluid and that's why I have the intense pressure. He's worried about my vision, my pupils are still two different sizes. I'm worried about it too. I don't like the way the world looks anymore. Everything is distorted, and it just feels... Foreign. Obviously this is impacting my cognition.

I feel anxious constantly because I can't seem to think well enough to comfort myself. I no longer have the ability to cope as well as I once did. I refuse to take Ativan, or any other benzo. They seem to have the opposite effect and make me feel worse. I still have to infuse Benadryl every 4 hours just to make it through the day alive.

My last igenex tests came back with only band 41 and 58. Super negative. That just makes me even more confused about what the root of all my issues are. I am in constant, agonizing pain. I can't look up or to the sides without my vision going wonky and getting super dizzy. My blood pressure is lower than 80/50 more often than not. I turn purple, I'm covered in strange rashes, my hair is falling out in handfuls, I'm having trouble swallowing and talking. I have stuff leaking out of my ears. My spine is getting more and more bent out of shape, they called it kyphosis.

Simply bending over to pick something up off the floor can ruin an entire day. If I sneeze, or cough, or laugh too hard it feels like my skull will explode. I've said a few times it feels like if I could take my teeth out my head would feel better. Or if I could crack my skull open with a hammer it would feel better. Ear pain is no joke. And who knew toes could hurt so bad????!!!!!

I'm not able to lay all the way down comfortably, so I've been awake all too much. That's likely contributing to my scatter brain tendency. I've had to really dig deep. My doctor is always reminding me "it's possible to have more than one thing wrong with you. We can't blame everything on Lyme. We've been missing something. You can have a seperate health issue and get bit by a tick..". He's so right. So be careful of blaming everything on Lyme.

If treatment isn't working and you're not getting better don't lose hope. Be honest with your doctor. Tell them how it effects your life personally. I've found that if I say "I have a headache again" it doesn't have as much ring to it as "if I bend over in the morning too much I won't be able to take care of my son the rest of the day. And then I start wishing I would just die already because the feeling of hopelessness that I'll ever be able to play with him comfortably overtakes me.". There is a side to this that they don't see. But if you let them in and tell it like it is (at least for me, my doctor is amazing), it seems to stick better. There is a such thing as being too tough.

I hope you all get to laugh today, and feel all warm and fuzzy over something stupid 😜

I hope you don't mind, Mishka, but I talk with IHL often, so I know she deals/dealt with electricity in her brain at times.

MCAD or any of it's forms is nothing to wait around with or mess around with. I would encourage you to look into the possibility of having it if you have many of these same issues. I just posted about this in this thread, so please look for my post that contains several informative links:
www.healingwell.com/community/default.aspx?f=30&m=3632387

IHL - I'm so glad to see you here again. More than that, I'm glad you have an open minded doctor who won't give up on you! What you said about explaining your symptoms is right on the mark. It reminded me of one of my doctor's appointments. Every time, the nurse goes over a checklist with me - rate your pain, fatigue, etc. on a scale of 1 - 10, and then she gives a summary to the doctor before he sees me. My doctor tended to fixate on pain, I think because it's such a common symptom. One day, near the end of my appointment, I mentioned that fatigue was my worst symptom and that because of it, I couldn't begin to keep up with my housework. When I said that, his whole expression changed, like he finally saw my situation. Now, he's a pretty compassionate person, but since he sees people with aches and pains day in and day out, I think he just starts to see it as normal. So, yeah, giving context and painting a picture of your symptoms really makes a difference. I'm so glad your doc gets it! I'm praying for you and hoping that your next test results point you in the right direction!

Hi IHL!-

I always get excited when I see your screen name show up. I always hope that when I read your story, that the doctor found out how to help treat you more with these absolutely terrible symptoms that you deal with.

You are truly an amazingly strong woman to have gone through soooo much pain and suffering.

Sending you many, many ((((Hugs!))) to get through this very difficult time in your life. 💛💛💛

Hang in there IHL - good to see you post again!

-p