Hitting the same wall...

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

New Member

Date Joined Mar 2018
Total Posts : 1
   Posted 3/20/2018 10:15 AM (GMT -6)   
If this aimless rant resonates with anyone, feel free to chime in. Not asking to be saved, but any insight, passing comradery, or a slice of common ground would be a comfort.

I don't know what I have. All I know is that I went for a hike in late 2002 and within the week haven't been the same, but everytime I try to zero in the symptoms they mutate, change again, jump around, and leave me chasing my tail for connections. I don't recall a tick; I didn't get the rash... I was in tick country (the Northern IL portion) but I was ignorant of Lyme at the time and thought I would've had flu symptoms. I was mainly zeroing in on the involuntary movements that cropped up from mild to extreme in a weeks time; practically overnight.

I'm not going to get into the meat of it, just the doctor situation that takes the nightmare into funhouse mirror labyrinth territory.

In 2004 I lost my insurance because Blue Cross didn't like the fact that I had been poking around alternate clinics too often after getting sick to death of being sent out the door with tranquilizers to shut me up. The worst part is, because of having actual anxiety, it's made even non Lymish visits turn into this garbage. Last time my foot got bad up and I had to stay off of it or risk not being able to walk for weeks longer than I already was faced with, I happened to go in on a "good day" where it looked like edmea with a rash so I got saddled with a rash cream, despite the previous 2 times I went in for it I was sent to the ER immediately for an ultrasound (they feared a clot). Anxiety is apparently an awesome superpower - you're immune to all but the basic of easy to diagnose ailments!

It was literally the same problem, seen in a different state of progression and it went from "YOU NEED AN ULTRASOUND!" to "here's some rash cream, you probably have dirty shoes and edema in one foot". That is horrifying that it can differ than much for something that can actually be seen an analyzed. I wasn't there for Vicodin... Advil did me much better than that crap anyway. I was there for a simple answer. I didn't realize there was a threat of blood clots at the time. Now I know it's pretty much just something attacking my joints at random.

I lost vision in my left eye for a good 30-40 min (hopefully an ocular migraine, though I've never actually had migraines much less and ocular one before, but I'll never know since all I got was a CT scan; after an 8 hour wait the doctor finally came in, annoyed, to tell me to stop looking at screens so long (I told him I was reading when it happened..no matter that it was a paper book). Actually the last foot issue and eye issue overlapped at the same ER visit, but that's another story...I was fearing mini stroke at the time but had my history of neurological wreckage to root for in that situation. (I always have a lot more issues when forced to sit in excess. Shallow breathing attacks/body temperature plummets, skin burning up where ice doesn't even feel cold enough to relieve despite no fever..dunno if anyone with Lyme gets this. )

This kind of treatment for such basics, here I am at 40, a lot of days I can barely think my way out of a wet paper sack, and I'm somehow supposed to take on a system where every other account says, even an area like Suburban Chicago has no Lyme literate doctors (even if they did, the likelihood they'd take my $400/mo insurance, and if they did not like the insurance wouldn't try to fight them every step of the way, even though I'm extremely lucky to have them bleeding me out each month just incase I get what they'd consider a "real medical situation", which yes, it'd be nice to not bankrupt my household. Each doctor that has sent me home with "just stress" or worse, acted like I'm nuts or making stuff up/wasting their ten minute time slot has pushed me further and further from even bothering with them for anything. Thank God no one else in my family has anything "weird" because I'd have a hard time sitting by watching them do that to someone else. But here I am 14 years later, it progresses, mutates, and gives me breaks once in a while, and when i think i find things that have been helping me it comes right back in and leaves me chasing my tail for solutions/connections. I don't think I have this fight in me... I don't exactly have a proactive support net around me, at all. "Why don't you try seeing a doctor".

Anyway... I was 22..23.. something like that. At a crucial crossroads in my life. It'd be one thing if there was one issue we were saddled with, could accept our lot in life and have everyone around us cheering us on when we got our diagnosis. Most people believe the general message of "if something's wrong, a doctor will tell you". But this... it doesn't exist.. get treated like dirt from all sides at worst, get pitied with those who feel helpless on how to help at best (if you've still got people close enough to see you go through the cycles long enough). It's embarassing having teenage cashiers get pissy at you because you space out and struggle to read the self checkout screen at the store because it's one of your "off" nights.

At this point... the futile obstacle course they make this almost by design, I don't have anywhere to turn. I can't afford to doctor hop much less jet set to see a doctor with a half a year waitlist just to see if I'm even barking up the right tree. Most doctors are immediately opposed to the patient even having an idea of what they might have to begin with. If I had my mind and nerves in tact believe me I'd be putting up the good fight... but I'm so far in the fog...without my mind I can't pull myself out of it.

Forgive the typos, I don't have the wherewithal to try to edit this trainwreck. : )

Post Edited (bansh) : 3/20/2018 9:46:15 AM (GMT-6)

Regular Member

Date Joined Jan 2018
Total Posts : 78
   Posted 3/20/2018 11:37 AM (GMT -6)   
Hi Bansh, unfunny story, hope things will get better. I can relate quite well, some similarities with my case, I am 42, also got the tick when hiking during late 2014, and it has turned life upside down.

Did you try to do a lot of change in your diet, and did you notice any difference in symptopms?

Veteran Member

Date Joined Mar 2014
Total Posts : 5081
   Posted 3/20/2018 11:42 AM (GMT -6)   
Most import self help is recognizing gut health, or lack of it, this is regardless of what infection or immune issues you have:

-food symptom issues and correct them.

-recognizing candida

there are many supplements that can help with this, using our forum goggle, its for this forum only, and its great.

Like many mysterious chonic illness, we must learn on our own. LLMDS help, but are seldom the answer for everything we deal with, there is just to much. Learn in increments, learn to adapt in your journey. You wont be rock bottom forever.

There are a few LLMDs in southern/central Wisconsin.

Some just find an open minded Dr and order Igenix testing, then if positive, treat with herbs on their own. Many here do that.

Post Edited (astroman) : 3/20/2018 11:16:41 AM (GMT-6)

Regular Member

Date Joined Sep 2017
Total Posts : 52
   Posted 3/20/2018 12:07 PM (GMT -6)   
Hi bansh,

No fun, No fun at all.

So you are undiagnosed, and untreated...yes?

If you absolutely are not able to pursue a Lyme literate doctor, this forum has a lot of wonderful information. Just perusing, and reading all you can, even old posts, may help you begin to self diagnose and treat.

I suggest baby steps and a constant aim to learn and apply more and more to your personal situation.

Good luck!
DX Borrelia, Babesia, Bartonella and Ehrlichia June 2017.
Symptoms since at least 2007.
Started treatment June 2017
-Artemisinin, A BART, A BAB, Biaxin, Chlorella, Liposomal Glutathione, Magnesium, Omnicef, Prothrivers Wellbrain, Tindazole, Tranquility, Uplift, Fish Oil, B Vitamins, Vitamin D, gluten free, sugar free, dairy free, lemon water, detox tea, coffee enemas.
30%-60% Healed

Forum Moderator

Date Joined May 2014
Total Posts : 33798
   Posted 3/20/2018 12:50 PM (GMT -6)   
Hi banish, welcome to our community.

I'm sorry that you've been dealing with this for all this time....with no understanding.

There may be some LLMD's near you...so you won't have to travel far if you want to see one.

The other thing is you could do an Igenex lyme test - a WB IgM and IgG for $250.

You can email me and I can see what I have listed (LLMD's) near you.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Veteran Member

Date Joined Aug 2017
Total Posts : 1988
   Posted 3/20/2018 8:59 PM (GMT -6)   

I'm sorry for what you've been through. Your symptoms do sound very much like Lyme and coinfections. If you can't afford to see an LLMD (who likely doesn't take insurance) or don't want to be treated with antibiotics, there are plenty of options. Many of us treat with herbs and supplements with or without a doctor/antibiotics. If self-treating is an option you're looking into, I'd recommend you get Stephen Buhner's books on Lyme and the various coinfections.

Even if you are not 100% sure you have Lyme, herbs are good medicine and can accomplish much in the body. Clean diet and detoxing also are good regardless of what infection/illness you have. Buhner also has a book on Herbal Antibiotics and Herbal Antivirals that are great home medical references to have.

If you have a good general doctor covered by insurance and your insurance covers labs, there are labs you could see about getting done that might help reveal the true state of your health and immune system.

Veteran Member

Date Joined Nov 2015
Total Posts : 4893
   Posted 3/21/2018 2:44 AM (GMT -6)   
eye stuff was bart and toxo for me ...regular docs are useless ...consider herbs rife and bvt welcome
New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, August 15, 2018 6:37 AM (GMT -6)
There are a total of 2,992,817 posts in 327,992 threads.
View Active Threads

Who's Online
This forum has 161206 registered members. Please welcome our newest member, Prakash33.
272 Guest(s), 8 Registered Member(s) are currently online.  Details
tickbite666, 18yearsandcounting, sierraDon, Prakash33, kat0823, RobLee, Union98, Grand River Guy