Aa
Getting worse and worse - scared
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.
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.
Guess that is what happens when I make a post during a mini anxiety attack. Sorry guys.
Hi pally,
Welcome, I am so sorry you are here but we are here to help you.
I had those same symptoms . Others will explain to you in a better way because my brain is not the greatest either. It would be beneficial to find a Lyme literate doctor or LLMD. You can go to ILADS dot org and email them asking for an LLMD near to you. If you do have Lyme and perhaps one of its co-infections, the sooner you start treatment the better.
Anxiety is also a side effect.
We are here if you have more questions. Hang in there.
Welcome, I am so sorry you are here but we are here to help you.
I had those same symptoms . Others will explain to you in a better way because my brain is not the greatest either. It would be beneficial to find a Lyme literate doctor or LLMD. You can go to ILADS dot org and email them asking for an LLMD near to you. If you do have Lyme and perhaps one of its co-infections, the sooner you start treatment the better.
Anxiety is also a side effect.
We are here if you have more questions. Hang in there.
Yes, I felt the same thing, including the anxiety. At my worst, I was driving home and I was honked at by a car I didn't see and stopped at a green light that I just didn't see. I realized I had to get home as soon as possible as I just couldn't focus on anything. When I got home, I hit the recliner and pretty much just stared at the wall for awhile until my brain stopped spinning with anxiety and confusion.
I am much better now after 10 months of treatment, but I probably have about 6 months to go.
I am much better now after 10 months of treatment, but I probably have about 6 months to go.
Ditto the responses above ... and no need to apologize. We've all been there and/or are still going there, tho with treatment, it does get better.
I see you are in San Diego, so the good news is that there are LLMDs available to help. Finding the right doc (meaning one who understands Lyme and its coinfections) is the first and most important thing to do. If you don't have Lyme, an LLMD will tell you that. If you DO have Lyme, a nonLLMD will likely not be able to tell you that.
Therefore seeing an LLMD is, to my untrained mind, the best thing to do. I went through 20+ docs before one of them in desperation tested me for Lyme -- it came back positive, which the tests often don't do, because the standard tests are lousy. But as nonLLMDs will do, the doc looked at the test and said it was wrong, I couldn't possibly have Lyme. That's why it's so important to find an LLMD for a work up and consultation.
If you need help finding an LLMD, let us know --
There is a California Lyme disease association (www [dot] lymedisease [dot] org).
The main national group for LLMDs is www [dot] ILADS [dot] org. ILADS has a referral service if you email them at
contact [at] ILADS [dot] org
and tell them where you are and where you can reasonably travel to. They will send you name(s), but sometimes it's not a good fit, so don't be discouraged if your first try doesn't feel right --
Among the effects of Lyme are feeling jittery and confused and foggy and out of control of normal life. Been there.
If you don't have Lyme, an LLMD (patient slang for an MD who understands Lyme, short for Lyme-literate MD, but not an official term or title) will tell you that too.
Let us know how we can help --
I see you are in San Diego, so the good news is that there are LLMDs available to help. Finding the right doc (meaning one who understands Lyme and its coinfections) is the first and most important thing to do. If you don't have Lyme, an LLMD will tell you that. If you DO have Lyme, a nonLLMD will likely not be able to tell you that.
Therefore seeing an LLMD is, to my untrained mind, the best thing to do. I went through 20+ docs before one of them in desperation tested me for Lyme -- it came back positive, which the tests often don't do, because the standard tests are lousy. But as nonLLMDs will do, the doc looked at the test and said it was wrong, I couldn't possibly have Lyme. That's why it's so important to find an LLMD for a work up and consultation.
If you need help finding an LLMD, let us know --
There is a California Lyme disease association (www [dot] lymedisease [dot] org).
The main national group for LLMDs is www [dot] ILADS [dot] org. ILADS has a referral service if you email them at
contact [at] ILADS [dot] org
and tell them where you are and where you can reasonably travel to. They will send you name(s), but sometimes it's not a good fit, so don't be discouraged if your first try doesn't feel right --
Among the effects of Lyme are feeling jittery and confused and foggy and out of control of normal life. Been there.
If you don't have Lyme, an LLMD (patient slang for an MD who understands Lyme, short for Lyme-literate MD, but not an official term or title) will tell you that too.
Let us know how we can help --
I already have apt wth a well known LLMD here in San d. Right now trying to hang on until then. (18th).
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.
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.
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...
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...
gibs, are you taking magnesium supplements? If not, do try it. Made a huge difference for me.
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.
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.
I still take some Vit D supplement, just because I don't get a lot of sun.
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.
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.
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.
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.
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.
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...
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...
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.)
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.)
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.
Good news, they are not permanent.
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
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
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.
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.
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. ;)
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.
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.
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.
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.
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