Getting worse and worse - scared

[pally10101]

Not sure if being on here is good for my anxiety or not,

I'm currently undiagnosed

My two most alarming symptoms are getting worse and worse.  I swear I just cannot think. At all!!   And standing on my legs feels like trying to balance on two dead pieces of wood.

Processing visual information I feel like I'm seeing pictures but I have no opinion on it and its just not even being processed. I've been staring at my Netflix menu not putting on a show because I can't focus on anything I try to do or watch.  Can someone please tell me they've felt this before and if it can resolve??   I'm really terrified all this stuff is permanent. I feel like I'm literally losing my mind!!!!  I'm a programmer for a living and if cant think, I can't work.

[freefallin]

Hi, I'm trying to formulate a response to you, but I'm incredibly brain fogged right now and having difficulty finding the words to convey what I'm getting at. But, ultimately, I just wanted to say that you sound a lot like me right down the the currently undiagnosed part. I can relate to staring at your Netflix window not putting anything on because you can't process what you're seeing. I do things like that all of the time. When I was in school, I passed all of my tests basically by using context clues, if that makes any sense at all, because it was too hard for me to actually read through and process the entire question a lot of the time. So I would pick up on key words in the question and figure out the likely answer that way...I don't know if that made any sense, but yeah. I very rarely read instructions, either, because I seem to have a lot of issues with instructions and directions and general; my mind just tunes them out. So I'd just cross my fingers that there weren't any strange instructions that we were supposed to follow for that particular test and jump right into the test items. I hate watching movies because I just stare blankly at them; my brain can't follow plot lines.

I had a similar experience to what happened to Ricobord when she was driving home, too. Once, I went to pick my dog up from the vet, and when I got out of my car, this woman came up to me and started screaming at me because apparently she was waiting for the parking spot I took. I never saw her. She was really mean, too...she kept asking me if I was  blind and told me that my mother obviously didn't know how to raise children (this was particularly upsetting because my mom died recently). I wanted to start crying and say, "I'm sorry. I didn't see you. My brain doesn't work very well lately, and I realize you probably think this means I shouldn't be on the road, but no one in my family believes I'm sick, so they won't let me get out of driving. If I stop driving and doing errands, my dad will kick me out of the house." It's so hard.

I've also wondered if all of my worrying is the source of my symptoms and this really is all psychosomatic, but I just don't see how that's possible. Sometimes it almost seems like it's possible. For instance, the other day, I was feeling pretty well and just all of a sudden was hit with this AWFUL feeling. I thought I was dying, so I called my dad and asked if I should go to the ER. Once I let him know what was going on, I felt somewhat better; it's like knowing that I was no longer the only person who knew how bad I was feeling, so it wouldn't be like I didn't issue a warning and try to get help if I did die, made me relax a little and therefore feel better. But I just really don't see how so many of my symptoms can be attributable to just anxiety. Anxiety doesn't cause at least 85% of my problems.

But anyway, sorry that this response is probably all over the place. I can't think very well right now. Best wishes.

[mojogal]

I am very happy too that you are seeing an LLMD.
We are here if you need us!

[Ricobord]

That sounds like a great decision. I am so glad you are going to see a LLMD.  Keep us posted if you'd like.  We are all here to give and receive support.

[JackieCalifornia]

Pally,

Thanks for your message.  We look forward to hearing from you --

Best wishes back at you -- J.

[pally10101]

Again, thank you all for your support

I don't discount that something underlying is wrong - I just decided to stop harping on it and letting it take me over with fear until find out what it is

I'm still relatively certain that there is a Lyme or for coinfection related thing going on.  And my appointment with the LLMD. is this coming Thursday.  

I'll be sure to keep you guys posted on my progress - and I wish you all the best in the meantime

[wonko]

I used to at times worry that my concerns were adding to my symptoms.  But what I have noticed after years of treating Lyme disease is that the better I feel, from treating the underlying problem, the less and less I think about it.

That is, my "hypervigilance" while undiagnosed and early in treatment didn't contribute to my illness, it was simply a symptom of it.

Best to you in finding answers and keeping mentally in check.

[Ricobord]

Hi, Mike.  I also hope you see this.

I have to echo what Jackie says, and I say it from having personal experience...Lyme is well documented to cause neuropsychiatric symptoms, especially anxiety and obsessive thoughts, even as far as panic attacks, psychosis and OCD.  I have had the anxiety and obsessive thoughts.  I thought my mother was out of line we she told me I was obsessing. I truly didn't realize it, and felt I was perfectly justified in being upset about being sick and doctors not being able to diagnose me. When my husband also insisted I was obsessing, I paid more attention.  It is only in hindsight as I got better that I could see I was obsessed about some things.

Some doctors who treat Lyme have documented this common behavior of Lyme patients who obsess (esp about their illness), are in a constant state of agitation, and feel a lot of anxiety.  THESE ARE SYMPTOMS, NOT PERSONAL FAILINGS OR "STRESS."

It is also typical with Lyme to feel horrible one day, not so bad the next day, pretty good, and then pretty crummy. Sometimes even all in the same day!  Symptoms come and go, wax and wane, and are often mysterious and confusing. This is classic Lyme.

Please get to an LLMD as soon as possible. Stress does not cause brain lesions and tingling and mental confusion. Spending a few months trying to relax will not improve an infectious condition.  You really do sound like I felt, which means you also need to get checked out for Bartonella. (Bart also causes neuropsychiatric symptoms, especially anxiety.)  Antibiotics can take care of both.

[JackieCalifornia]

Sorry, the first paragraph in my previous message was copied from Pally's post, meant to delete it after I parsed it in the rest of the message.  Sigh.  Feels like Monday somehow.  ;)

[JackieCalifornia]

One thing we all have have have to do is remind ourselves how bad it is to incessantly worry about this stuff. For all we know, this condition is over half caused or magnified by our own stress and anxiety inhibiting the recovery process itself.  Im not looking up any of this stuff anymore.  Continuously thinking about my state of health, is almost as toxic as exhausting as the condition I may or may not have in the first place.
Pally,

Sounds like you won't be reading this comment, but for the benefit of others who may, I'd suggest not falling into the trap of thinking your symptoms are all in your head without ruling out physical causes.

You say:  "my exposure to reading other stories of degenerating health seems to trigger a very bad reaction in my own critical and scientific thought process" -- yes, it does tend to raise one's anxiety level, but it an also help identify a physical illness that the docs are not finding due to their own ignorance and denial

You say:  "I think I just need to eliminate the belief that I'm not well and it will happen eventually."  Only if it is a psychosomatic illness, meaning one that you are imagining.  Denial of a real physical illness will not cure it.

You say:  "I felt pretty darn good until the day I read my abnormal MRI report, the panic that ensued for months after lead me to suddenly develop more symptoms of MS than I previously ever had. I don't think that is a coincidence."  One of the effects of a Lyme infection is neurological, including interference with thinking processes, hormonal effects that increase anxiety, and others.  So your anxiety reaction could be a direct effect of a Lyme infection; I'm not saying it IS, but I would not automatically assume it's just you overreacting.  It could be a sign of an infection.  It happened to me, and once treated for Lyme, the anxiety went away.

Good luck to you, if you read this.  We're here if you change your mind and want to chat.
  

[pally10101]

Today, as it has many times before. While laying by pool, my chest opened up and relaxed, and my latest week-long panic about my health subsided after some spurts. Last night my legs started going numb while taking a walk, I stayed standing and called a good friend whom helped calm me down. During talking to her I realized, "hey, it's been over an hour since I called and I'm standing and walking just fine".  Hmmm, maybe I'm not on a one way path to losing my ability to walk.  

One thing we all have have have to do is remind ourselves how bad it is to incessantly worry about this stuff. For all we know, this condition is over half caused or magnified by our own stress and anxiety inhibiting the recovery process itself.  Im not looking up any of this stuff anymore.  Continuously thinking about my state of health, is almost as toxic as exhausting as the condition I may or may not have in the first place.

I Think they've set up a good thing here, but my exposure to reading other stories of degenerating health seems to trigger a very bad reaction in my own critical and scientific thought process, I think I just need to eliminate the belief that I'm not well and it will happen eventually.

I felt pretty darn good until the day I read my abnormal MRI report, the panic that ensued for months after lead me to suddenly develop more symptoms of MS than I previously ever had. I don't think that is a coincidence.  

I'll be back in a few months to update you all about my status.  Thank you to everyone for your kind words and support.  

~mike

[Stargazer_Lilies]

I have a similar experience and I am unable to watch TV, movie, or play heavy action PS3 game. I called it "sensory overload."  It is as if the visual environment is too much for my mind, and my mind cannot process it or thinking.

Good news, they are not permanent.

[mojogal]

I don't feel any differently (better) with Mag. Wish I did.

[Ricobord]

Vitamin B12 shots really helped me. Vit D and C are critical for supporting the immune system.  Be sure to get tested for your Vit D levels so you'll know if you're getting enough.  Before I knew I had Lyme I was surprised at how low my D was, considering I am fair, live in sunny CA, and go outside every day. Now I know it is a really common symptom of Lyme.

I also take 300mg of CoQ10 and 3000mg of Omega 3 a day, in addition to Meriva Curcumin.  All are good for the brain and fighting inflammation. My doc specifically told me to take the Curcumin and the 3g a day of Omega3.   I would swear they have helped.

I had been taking Mag for about a month when I backed off to see if it was causing my GI distress. (It wasn't.) that is when I realized how much it was helping to ease my shortness of breath and my twitching.  I have also noticed that I have returning bouts of tachycardia when I stop taking it. (Mag is good for the heart, too.)

[JackieCalifornia]

Hugs to you and Pally both, Gibs!  (Gentle hugs, of course.)

[gibsongal]

me too.. sick of being sick and afraid at the same time.

yeah,  thanks i had not taken advil for a while and  started again recently...yesterday it did help my hands for about an hour!

i do the mag and D and C and NAC  q10  

had a bad/pain fatigue  day.. but i have a great family and that is all that matters.

I won't be  be afraid if you're not Pally...

[JackieCalifornia]

About your fatigue getting somewhat worse lately, I'm just guessing here, but Lyme (in my experience) tends to flare up up in summer, and my totally unscientific view is that fall is when it peaks.  Dunno.

Take it easy on yourself -- your body is fighting hard, and while doing mild exercise is good, resting when your body tells you to is important to do.  It's not a question of strength of character.  :)

Instead of Advil, try Tylenol -- within the stated doses, I don't think it would tend to do any harm.  And ask your doc, of course, when you get there.

That you can even get TO the pool, much less swim, is a testament to your mental fortitude -- that's a good thing.  Just remember to be kind to your body -- it's fighting hard for you.

[mojogal]

Don't forget your probiotics!

[pally10101]

Taking magnesium now. Sofar no help but I'm not stopping.  Also taking Vit B, D + massive suntanning, E, fish oil, wormwood, calcium.

Sleeping 10-12 hours per day.  Wish I could sleep less but I'm lately always exhausted and always prefer to be laying down and sleeping.  

This state of complete exhaustion and brain fog is new, ie this change is only since about a week ago. - Used to come and go more. Hoping it goes away.

Hot tub is a huge help (temporary) for legs. I swim 8 laps few times a week too. Prolly will lug myself to pool tonite to do same.

Thanks for all your responses. I'm glad I'm not the only one going through this.

I'm about to break down and take prescribe anxiety med, pamelor but I really am against antidepressants. Still trying to hold off.

[Ricobord]

I would encourage you to ease up on the Advil. Taking three at a time can cause liver damage, especially if Lyme has already affected your liver (which it can without you knowing it).  Advil rarely helps with Lyme pain anyway.  I have avoided it except for the occasional dose to ease a headache.

[JackieCalifornia]

Ditto for me too -- I went on thyroid supplements for a while, then when the Lyme was kicked, my thyroid ramped itself up again pretty fast.

I still take some Vit D supplement, just because I don't get a lot of sun.

[mojogal]

It is also common to have low Vitamin D, my LLMD found me low in mag and D, I have low thyroid also from this which can add to anxiety.

[JackieCalifornia]

gibs, are you taking magnesium supplements?  If not, do try it.  Made a huge difference for me.  

[gibsongal]

sorry you are in the same boat as we are.

I couldn't focus on a tv show or movie. couldn't pay attention.  Like i would see the images but heard the words late and  then the picture changes and i was just trying to comprehend  the words from the last 2 seconds... and then on to another scene and....over and over.

nothing made sense.

reading HA. I read books but didn't remember really.

Just trying to keep my self distracted from the joint and muscle pain.
and yes my legs hurt or are weak or very stiff.

Hot bath is all that helps with my legs.

Anxiety about not knowing and being un dxed is a battle. I finally have anti anxiety meds so that has helped soooo much.
They relax me so my pain is not as bad either.

my cycle is..
the pain starts..i take 3 advil.. and it continues to get worse.. and then i start to get upset and that makes the pain worse. I cry and  I take anti anxiety med ...Then i am not hungry and do not eat because of pain and anxiety...

[JackieCalifornia]

Good!  You can also ask to be put on the cancellation list, so they call you if somebody bails before the 18th.  Keep us posted -- !

Oh, and a suggestion, but be SURE to tell the doc if you do this:  Lyme uses up magnesium in its reproductive process, and it is (so I read) fairly common for Lyme patients to have low magnesium (Mg) levels, which affects all sorts of bodily systems and functions ... including making one jittery.  I had it really bad, and taking Mg supplements made a huge difference.  

I have read that the American diet is already deficient in Mg, so when the bugz start using up the rest, well, things can get dodgy.  The wiki on Mg says (but don't be alarmed -- this is just the laundry list of all possibilities):

"Symptoms of magnesium deficiency include: hyperexcitability, dizziness, muscle cramps, muscle weakness and fatigue.[1] Severe magnesium deficiency can cause hypocalcemia, low serum potassium levels (hypokalemia), retention of sodium, low circulating levels of parathyroid hormone (PTH), neurological and muscular symptoms (tremor, muscle spasms, tetany), loss of appetite, nausea, vomiting, personality changes [2] and death from heart failure.[3] Magnesium plays an important role in carbohydrate metabolism and its deficiency may worsen insulin resistance, a condition that often precedes diabetes, or may be a consequence of insulin resistance.[4] Deficiency can cause irregular heart beat."

Docs often don't think about this, and even my LLMD wasn't interested, but I told him I was taking Mg and how much and what variety, so he could take it into account.  

(When I was first really ill, I ended up in the ER twice in a week with heart irregularities.  They put me on IV electrolytes [incl. Mg] in the ER, and I perked up really fast, so of course they thought I was faking somehow, or they just didn't understand.  The second time, I felt SO good, I walked home over a mile, uphill, and felt great.  Strange, huh.  And stupid, but hey.)

When I figured it out it was the Mg that I needed, I did some reading and it said the most absorbable form of Mg is any variety ending in "-ate":  Mg citrate, malate, orotate, aspartate, etc. There is a brand called CalMag, but I've heard from others that it wasn't very effective for them.  My favorite (after several tries) is called Mg CAO, short for Mg citrate, aspartate and orotate.  Others have told me they like it too, but everyone is different.  When I run out of my favorite, I have tried others, but the CAO suits my metabolism.  Your mileage may vary.

But if you do try it, be sure to tell your doc on the 18th (or sooner!) that you are taking it, and how much.  You can do it!  We've been where you are, and it does get better w/treatment.