Undiagnosed

Hello my fellow forum members.
This is my first post, so please excuse not introducing myself prior. My name is Jim and I'm from Central Iowa soon to be 43yo. As many of you are, I believe I'm suffering the effects of lymes disease. I picked up the hobby of metal detecting about 2.5 years ago. I believe I contracted the disease about 2 years ago while hunting an old brushy wooded area. Been suffering with something for a while now. First effects showed around Febuary of last winter I went to the doctors 12 times...until around april of '13 when I started feeling a little better with the sunlight. Did a CAT scan, endoscopy, a number of x rays, heart tests and lots of blood tests, only to come out empty handed...other than I did find out I had emphasima, even though I have never smoked and I had vit. D difficiency. We did do 1 lymes test. My first symptoms where pains in the muscles in my back...and especially on the mid spine area and these have been present since.



Was feeling ok over the spring, summer and new year, though occationally ill. I had sinus surgery just before thanksgiving and thought I was all healed up and then the first week into the new year I started getting sick and then got a sinus infection. Took antibiotics for 10 days and it seemed I was starting to feel ok again. Then here come the same symtoms as last winter. My first symtoms started with heart racing, sweating and shortness of breath, all at the same time. Then came the abdominal pain/bloating/pressure along with a lumpy feeling in my lower throat/neck area.

Nausea. Times when I would feel like I had low blood sugar...before and after eating. I've always been a trim fellow, but have lost weight. My blood pressure is higher than it used to be and it fluctuates tremendously.

Wake at 4 am every morning with either stomach pain. nausea or heart racing and sometimes need to go #2 right afterwards. Lots of stomach/intestinal issues, though little to no diahrea.. moslty gas.

Started to notice my left calf/knee area feels heavy and my foot sometimes numb around the parimeter. Newer developments are brain fog, feeling of unbalance or tunnel vision, in ability to concentrate...lack of interest in my hobbys...a ringing in my ears and a short fuse. I started seeing another Dr. recently and we tested for lymes and it came back negative again. All tests have came back normal. Guys busy and can't get to see him until Monday. There are a couple other tests he wants to run...one more Lymes test and a urine test I believe...then possibly go to Mayo clinic. I'm tired of being poked and proded and tired of no sleep and being sick all the time. I asked him if he would consider just letting me try a lymes regimine, and I'd sign off on it, but he hasn't gotten back to me yet. While I'm not 100% certain I do have it, I feel strongly that I do. The longer they wait the worst it gets...gotta do something already.


Thanks for listening and any insite

Jim

Post Edited (concepts) : 2/28/2014 1:33:49 PM (GMT-7)

Hello and welcome. I'm so sorry what you have/are going through. I can relate to many of the symptoms you listed. Mine wax and wane but never go away completely. The nausea is rough = shredded (raw) ginger steeped as tea has been helpful at times for me. The muscle aches are challenging as well. I have found no real help for those other than hot water bottle.

So many of us get the "just anxiety/psychological" response - I think it's a medical knee jerk response when they can't figure anything out and aren't secure enough to say "I don't know but I'm going to try and help you." It's so sad for so many.

Hang in there and keep coming to this forum. I'd suggest reading the "new to Lyme" for lots of really good and supportive information. You are not alone.

Concept unfortunately it sounds like you have it.

Start a new post, looking for a LLMD in your state and others will respond.

I suffered 15 yrs before being diagnosed, it's not easy. The tests aren't accurate, my doc gave me some herbs and told me if I have a reaction then I have Lyme since my blood work wasn't CDC positive but I did have some positive bands.

By the way, it can supposedly be sexually transmitted and I believe my hubby now has it, he will find out soon. He has had symptoms for 5 yrs, his first being a tremor and basic muscle achiness.

There is a blood test you can also ask for called the Hnk1 CD57 panel, google it to learn about it.

Good luck and hopefully you will find an LLMD soon.

Concept first I am sorry for all you are going through. I share many of your symptoms mad then some, however I had been infected as a small,child and only found out last year and I'm in my 30's. I have pretty severe cardiac manifestations, I'd say that's my scariest symptom. It definitely sounds like you may have lyme. So you think it's been about 2.5 yrs? You just need to get in with a good doctor. People do get better. Not me yet but I was only diagnosed a year ago and have had some barriers to care.

Hi Concepts! I live in eastern Iowa. My son has been diagnosed with lyme just as of last month.

We see an llmd in IA. I'll email you her name.

She accepts insurance too, which is good.

My son tested with Igenex through her office. Technically my son's test was negative, but had a lyme specific band present and another one positive, so with that and his symptoms she is treating. (Thankfully!)

Also, something interesting is that an Infectious Disease Dr. in Iowa City said to treat with just the two band present and not the five the CDC looks for. The reason we heard from an Infectious Disease Dr. in Iowa City is my husband wanted a second opinion (I didn't, but agreed for my husbands sake) and insisted we went our pediatrician who called on the Infectious Disease Dr. in IA City. The IA City Dr. said that my son's test results were "concerning" and to treat. (I've learned this is not typical Infectious Disease Dr. response.)

He also said that in IA City they are seeing more and more cases of lyme all the time, about 5 new cases a month. (and those are the ones he's hearing about. So many are not going to Infectious Disease Dr., b/c of disbelief and not the right treatment (that's why we didn't go to one, but chose the llmd).

I just went to email you her name and you don't have an email address listed. If you'd like to add that I'll send you her info. and a couple of thoughts about her.

Post Edited (stacestar) : 2/28/2014 12:26:09 AM (GMT-7)

Thank you all for the inspiration...and the tips. To those who got the run around so long...and suffered this "hell"...I'm very sorry....very....
I believe I got the disease in eastern iowa...a woods about 35 miles west of Iowa city...but in all honesty have been a shore fisherman since a kid...and may have had it much longer...much longer. I've had palpitations for about 10 years now. Pulled ticks off of me for years...When out and about.
Just started feeling very ill these last two winters. Very well could be I got it two years ago though...from that woods. I remember pulling off the smaller tics. Never seen a rash..and if there was one...in may have been masked by poison ivy. We get a lot of the bigger brown ticks here by my house too.
Other symtoms I didn't mention are the double sighs...and the yawning.
Will get my email set up later.
Thanks again all for your support. It actually feels a little better knowing what I may be up against.

Dr boom,
Yes.. head ache pressure on the top sides. Ears sometimes pop like when you swallow on a plane...sometimes followed by the sound of someone putting earphones on me and ringing loud in my ears. Stiff neck all the time. Generalized exhaustion...yawning. I'm ..or was a very active person and interested in lot of things...now just felt like I've got trapped in a net...

Maine76, that could be true, but never had this extreme or specific kinds of symtoms. Also know I have been bitten by red ants...in the recent 2 years as well. Seen someone mention that they may have gotten it from that ?

One of the worst symtoms is the thumping hard heart beat...Constantly...ughhh!

Post Edited (concepts) : 2/28/2014 9:19:07 AM (GMT-7)

I know the bounding heart beat is no fun! I have it too, when I lay on my lefy side it pounds against the bed. I used to downhill ski, water ski, fish, hike, and go to the beach a lot, I've been riding horses since I was 4. I definitely have always loved the outdoors and now I'm often stuck indoors, it has been very hard on my spirit. At times I feel a shell of of who I once was, but I have to behoove I will get much better. I'm not even asking for complete healing just like 50-70% would be awesome! I've been praying and getting a lot of prayer, not sure what your beliefs are but I will pray you get the help you need.

Maine76,

I feel for you....
i know how you feel with your job..and how things hit especially at the wrong time. I was in the same boat... my kids miss "me"...The guy that would wrestle with them...shoulder rides...chase them endless around the house...
sometimes I try..but i don't get very far....and now I'm even short with them...and ware earplugs...
I read to one of my boys while my wife reads to the other. Every night...
Tonight I was reading along and just out of the blue I couldn't understand what I was doing...i had to stop...take some deep breaths...and even after that reading wasn't very easy..I kinda staggered thru it. Then just had to call it a short night. We were reading Harry potter...sorcerers stone...a fun book...book is better than the movie:)
Also...Thank you for the prayers... back at you!
Got a birthday party for my son tomorrow AM He invited some friends to go to a place where they have a bunch of indoor trampolines. Gonna drink my pro biotic and vi e it my best go.
Thanks again
Jim