Good Day and Bad Days

So..

I am still waiting my test results from my original Dr. They should be in around the 18th or so. At that point, if it is positive, I'll be making a decision about treatment. If it's negative, I have to decide to whom I should go next.

Anyway, I was wondering.. Do many of you have fluctuations in symptoms? I have a swollen gland in my underarm today that was not there a few days ago. A few days ago, I had one under my chin. It was gone in two days. Then low grade fevers. I don't have them every day. Just every 4-5 days I get one. Then the tingling in my face and pinky. Here one day, gone the next. Some days, I swear I am better. Some days my heart beats out of my chest and others, it's just peachy. I'm almost always tired but sometimes, I am able to do things (housework, shopping). Some days are spent on the couch and bed because I'm exhausted. Brain fog also comes and goes and I noticed my good days are usually when it goes. I hate brain fog. I think that's why I can't stand drinking any alcohol anymore. I used to love trying different wines! Now I'm like, "I already feel drunk so better not."

Nearly every symptom I have comes and goes and comes back again. Some are just annoying but some are scary. I notice before my good days, I have a couple of REALLY tired days. Anyone else notice these things?

Thank you so much for reading this. :)
Heather - Still searching for answers

Yeah, it makes planning out more than just the next day rather difficult. Hour by hour? Sometimes I get the feeling it's by minutes. Although, I have so many symptoms that half the time I'm completely ignoring most of them. I'm always waking up wondering if I can even get myself out of bed (great way to start off the day). There are definitely some days that are a lot better than others.

I agree. Migratory aches and pain and symptoms are just so classic and common with lyme and its coinfections. I really thought I was imaging these things and almost went crazy myself. How could anything cause my face, my teeth, my neck, my muscles, my groin, my fingers, my face, my head, my wrists, my knees, my ankles, my heart, my eyes, etc. etc. etc. to ache. It just didn't make sense but it did. I drove myself nuts try to "figure it out" but I did.

I learned to live one day at a time, and literally one hour at a time to get through. I am just amazed that this disease is so baffling and yet unrecognized by the medical community. I believe in the next ten years it will be much more accepted and treated because treatment really does help. Best to you.

Test was negative and it was the Elisa. I obviously don't trust it but hoped it would be positive so I could see if my Doctor would treat me by ILADS guidelines. I guess now I need the Western Blot and/or find someone to diagnose me clinically.

Btw, anyone ever lactate for no good reason? I'm baffled by this newest symptom. I guess I better consider other options aside from Lyme. Still awaiting MRI results. I imagine that will tell me if lactating has anything to do with tumor or not.

I feel at a loss as to what to try next. Brain fog is bad today and I'm upset by the test results.

Hi Alhanna

I can definitely relate. Symptoms there one minute and gone the next! Sounds like lyme to me.

The elisa test is useless, I had 3 negative elisa tests before testing positive via IGINEX. I would highly recommend you seek out an LLMD asap, even well meaning doctors know little about Lyme.

And yes the lactating is common, i've had this many times, since contracting Lyme.

Good luck!

Lyme and the other tick-borne infections can certainly cause some weird things to go on in our bodies!! If you want to wait for your regular Doc, waiting until the 28th won't really do any harm, although I fully understand that it'll still be a long wait!

Otherwise, I can offer a link to a site that has several sites from Germany listed. It's been quite a while since I took German in High school, so to say that I'm a little rusty with German is huge understatement - so I'm unsure of what info is really on these sites!LOL!!

Here is that link: www.canlyme.com/.
On the left side of the page scroll down until you see "World wide support finder". Once you click on that tile, it'll take you to another page where you will see - on the right side of the page - United States ..... click here
Other Countries......click here

Click on the "other countries". On the page that will take you to, on the right side of the page look for Europe. Under that listing you will see Germany listed with several links.

I certainly hope that those pages are helpful, because I don't know what all they may be saying!!! LOL!!

I know what you mean about not being surprised that something like a third eye has happened yet!!! This is definitely one of the most complicated infections around!

Are you sure that you aren't experiencing Sciatic pain? Your description of what you are feeling are pretty close to the way I would describe my sciatic pain. The toothache feeling can get pretty intense, especially when paired with muscle spasms in the rear cheeks!!

Hi again, all.

Today I got my MRI results. They are totally normal.. as I figured. No signs on MS. No tumor.

I now have a short list of LLMDs in Germany. Unfortunately they are two+ hours away. I'm thinking about staying with my parents in Ohio and trying to find an LLMD from there. It's a difficult decision because it would be stressful being away from my kids and husband long term and stress really is the last thing I need at this point. My next appointment with my GP is on the 23rd. I believe they will test for Lupus at this point. Maybe they will actually examine me this time.

Anyway... I am feeling frustrated and unsure of what to do. I"m leaning toward driving the 2+ hours and seeing if this particular clinic I have found ( LLMD clinic ) offers a place to stay for the initial treatments. I understand they also have yoga, diet, herbal supplements, massage lymphnodes and hot stone massages. Also group sessions with other patients. Sounds promising? I worry about the cost. Being a military family, we are far from wealthy but, we are willing to cut back in order to afford treatments.

Meanwhile, I'm allowing my GP to rule out other conditions. I don't know what else to do. ( I may draw the line at being spinal tapped. Ugh. At least until I meet with LLMD, anyway. )

Thank you, Traveler for your help, btw! :) Thanks to everyone else for reading!

Alhanna!
Well, allow me to virtually salute you and your spouse for your sacrifices for our country!! I like to honor all those who serve!!!

I agree with you about the stress!! It has been my worst enemy for most of my life! Keeping your stress levels as low as possible is a good thing! I would encourage you to learn all you can about that clinic! The hot stone massages sure do sound good!!! LOL!

If you should decide you need to come back to the states for treatment, maybe we can help you find a LLMD to treat you! Please let us know what you decide to do!! and how you are doing, of course!!

Traveler said...
Alhanna!
Well, allow me to virtually salute you and your spouse for your sacrifices for our country!! I like to honor all those who serve!!!!

HOOAH/OORAH!!! (I don't know which, just covering all bases)

*Salute*
Thank you!

I always make a point if I have the chance to thank those in the service, especially because of where I go to school. I've always found it interesting when everyone would always complain about what they have to do, especially when they complain to someone who wish they had the ability to only do like 1/1000 of what they can...

Take care!

yup...im ready for the big guns,,.......ready ready...heck yeah.....alhanna...salute to ya also......traveler...i was told they dont give pain meds...and she didnt offer any.....but i think ima call her....yup my buttocks hav about done me in...they burn like i have overworked them...going on 4 weeks now...ask me if im crazy yet?......me me me...*raising hand*