LymeNet Flash: How impaired are you?

This is topic How impaired are you? in forum Medical Questions at LymeNet Flash.

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Posted by broguearcher (Member # 5905) on :

The more I read about other's Lyme stories, the more I realize that my own situation is not nearly as bad as it could be.

The past two years I've been treated for LD and it's been real hard to say the least.

My biggest complaints are the ever present fatigue and the spaced out detachment from my mind and body that comes over me. It happens nearly every night; usually around 5:30-6:30 PM. Does anyone else experience this? It's almost like clockwork and it's really rough. I have so much difficulty focusing and being "there" for my wife and kids.

All that being said, I am rather fortunate. I play basketball 4-5 days per week with my high school students. I lift weights and do other exercises 3-4 times per week. I'm not entirely different, but different enough. My wife complains about my irritiability and my disconnectedness.

If I had to rate my self in comparison to what I used to always know as "normal", I will say that I vary from 5-8 on a scale of 1-10. With 10 being "normal".

What are your experiences? How "normal" are you? What can you now NOT do that you used to do? What is your daily routine like? Can you still work? Can you still do your usual hobbies and activities? I want to gain some perspective on my situation compared to that of others. Thank you..... Sam.

Posted by pomegranite (Member # 3339) on :

I think that I am also more fortunate than many...but also go through periods of intense suffering.

I work full time and maintain a responsible job. I still hike on occasion (but not 4 days a week like in past). I still do a vigoruous yoga workout about once a week.

I definitely have had periods (lasting for months at a time) of brain fogginess and feeling disconnected from the world around me. There was a chunk of time when I would become "vacant" as in physically present but nobody home by 7pm every night. Blessedly this passed after 5 months. It returns in smaller chunks now. Sometimes it happens during the day.

Keep at your treatment. I've been under treatment for 2and a half years. I'm better than I was. But I still have horrifically bad times. I take hope from the progress that has been made. But I can only see that by taking a long look back. If I look back only a few months it seems like nothings changed.

Be persistent! Hang with it. Trust that it will improve.
Pomegranite

Posted by broguearcher (Member # 5905) on :

Wow!! Your experience sounds very much like mine. I too have intense bad periods but overall I'm not all that disabled. The evening mind vacancy thing sounds eerily familiar. I'm glad that you were willing to tell me about your situation. It's good to know that I'm within what is reasonable for a lyme sufferer. I've got 2 years of treatment under my belt with ?? more years to go.

quote:
Originally posted by pomegranite:
I think that I am also more fortunate than many...but also go through periods of intense suffering.
I work full time and maintain a responsible job. I still hike on occasion (but not 4 days a week like in past). I still do a vigoruous yoga workout about once a week.
I definitely have had periods (lasting for months at a time) of brain fogginess and feeling disconnected from the world around me. There was a chunk of time when I would become "vacant" as in physically present but nobody home by 7pm every night. Blessedly this passed after 5 months. It returns in smaller chunks now. Sometimes it happens during the day.
Keep at your treatment. I've been under treatment for 2and a half years. I'm better than I was. But I still have horrifically bad times. I take hope from the progress that has been made. But I can only see that by taking a long look back. If I look back only a few months it seems like nothings changed.
Be persistent! Hang with it. Trust that it will improve.
Pomegranite

Posted by johnlyme1 (Member # 7343) on :

My LLMD had me do a whole Metametrix test on my whole system - Many things came up - But one that relates directly to energy leve was COQ 10 - my levels were so very low. My Dr has me on 600mg per day - this is 10 times the normal - this improved things a lot - But make sure you discus with you LLMD befor taking any.

Posted by broguearcher (Member # 5905) on :

Sounds promising to me. I'm all for supplementation. I currently take Niacin and Acetyl L-Carnitine daily in addition to the rest of the regimen. Anything that will improve my energy and focus is of interest to me.

Does this level of CoQ10 end up costing you a lot?? I imagine that it would.

Thanks,

Sam

quote:
Originally posted by johnlyme1:
My LLMD had me do a whole Metametrix test on my whole system - Many things came up - But one that relates directly to energy leve was COQ 10 - my levels were so very low. My Dr has me on 600mg per day - this is 10 times the normal - this improved things a lot - But make sure you discus with you LLMD befor taking any.

Posted by DolphinLady (Member # 6275) on :

On a scale of 1-10 with 10 being normal, I range between 3-4 after 26 mos of treatment. I can't work, exercise or deal with too much stimulation.

I need to move very slow and gentle and watch what I eat otherwise I start to regress.

Before treatment, I was at 0-1/2, couldn't even stretch. Today, I do gently yoga everyday.

My most debilitating symptoms are fatigue, pain, low blood pressure, emotional lability, brain fog. I used to also have the disconnectedness, but that has improved by about 90% thank goodness because it was really scary. I still have it, but less intense and less frequent.

Posted by NUTBOBUTT (Member # 7242) on :

My main complaint is all muscle and joint pain. Mostly my muscles. I do have the occasional brain fog and fatigue. But usually my brain is ready to go but my body just won't. Any day that I can get out of bed by myself is a good sign.

Ibuprofen has now become by best friend and I don't leave home without it. Although there have been a few days that that doesn't even work.

I do work on a call in basis so I guess I feel fortunate to be able to do that.

Posted by SteveInMinnesota (Member # 6661) on :

I'm probably also more fortunate than most. Until a week ago, I was working full-time and functioning somewhat normally. I'm now on IVs three times a day so I adjusted my work day back to about 7 hours. I suffer from brutal headaches 24 hours a day and general joint stiffness and pain. The brain fog cleared up significantly recently when I changed Abx. My LLMD is going to add another ABx to the mix so hopefully we'll continue to make progress.

I couldn't even imagine playing basketball or even jogging at this point. My life involves getting up and making it through a day until I can get back to bed.

By the way, I'm not sure how long I've had Lyme. About 2 years ago I was hospitalized with Menegitis and nearly died. The world famous medical institution I was at, told me that it was the wrong time of the year for Lyme. They tried treating me with all sorts of masking type drugs like Amiltryptilan. Finally 5 months ago my wife convinced me to see a LLMD. I think I've been on a course to recovery ever since then.

Posted by mlkeen (Member # 1260) on :

I was very impaired for several years. I basically survived on the couch. I could come and read here sometimes but hardly type. I slept 14-16 hours a day and hardly worked.

The past two years have seen HUGE progress. I have been on abx continully and had mepron for babs.

I lead a pretty active and full life. My days are still short, I say NO to most evening activities and don't always feel well, but looking around at "normal" people I'm in much better shape and don't have heart disease or high blood pressure.

Everyone out there, DO pamper yourself with good care, nutrition and rest. You aren't any good to your family sick.

Have a great week-end. Going sailing-

Mel

Posted by Monica (Member # 224) on :

At this point I have to walk with a walker (that I have named Johnnie). This is as of the beginning of March when I started my new regimen of Ketek and then Cedax with it.

Estimate I've been infected at least 17 years and over that span of time my symptoms have run the gamut.

My right leg usually feels as if it weighs 300 lbs., my right knee hurts almost all the time, and I have no ability to balance myself.

At least brain fog has never been one of my problems and I am still working a full time office job.

Posted by broguearcher (Member # 5905) on :

WOW, WOW, WOW, WOW...... your stories are moving. I didn't know that so many of you were this restricted and affected. I will pray for all of you and hope that you will all soon reach a higher stage of normalcy.

I'm also on the way back -- I'm definitely not working from such a deficit though.

Sam

Posted by bg (Member # 46416) on :

Sam,

You'll see from this site that there are between 40-50+ posts/replies here daily.

So to help us all, please be as specific as possible for the TOPIC line, which you did Sam. You will get many more replies as we try to help you, help us out.

Also, you can EDIT your text anytime. You can NOT edit a subject line so that's why it's important to get it specific the 1st time since we all have limited time here..ok.

You can just reply back to others; you don't need to quote them. Just use the boxes on top/bottom to REPLY TO POST.

If you do use the quote box, please be sure to remove the BOLD [B] at the beginning and ending of the quote. The bold is really hard on us late-stage lymies whose vision is so supersensitive.

Also, please try to limit paragraphs to 6-8 lines of text only and double space between paragraphs...again helping the many late-stage lymies on board. Thanks so much for your helping us, help you.... You'll learn a lot here by all!

Welcome Sam to our lyme world.

I was misdx for 34 yrs. until 7-04; worked until 6.5 yrs. ago. Was the biggest user of sick leave all those yrs. of continuous working.

Yes, I experience what you do. Been on abx since 8-04; no change; actually on 11 rx daily. Last year brought these dx for me:

diabetes 2 in Jan; late-stage lyme in July; and Dec.'s sleep apnea/restless leg syndrome.

So it's been a very trying 1.5 yrs. trying to adjust to so many things wrong with me.

You are fortunate you can still do physical things: BB, etc.

I loved walking; can't even walk 1 block without huffing & puffing & my aching heel spurs! ouch!

I have 5 frozen ice packs on me at all times and switch them every hour to numb my constant pain in neck;shoulder, lower back, and my entire left thigh/SCIATIC nerve which has so many knots in....ouch.

I'm allergic to smells so can't use warm water exercises or spa! That's where my rashes started that went over my entire body.

Need to exercise to help my diabetis; very painful just doing stretching exercises.

If you get to the point you feel you no longer can work and thinking of applying for SS disability insurance benefits, post that here.....lots of info here from me, others, and be sure to go to TREEPATROL & TINCUP'S combo NEWBIE links where disability is specifically mentioned...ok!

bettyg, Iowa

Posted by Nanbo (Member # 7382) on :

Hi,
I have been on abx for two years and I also had IV therapy for a month last year. I am a stay at home mom to 6 and 4 yr old very active boys. I used to run nearly everyday and was a personal trainer. If I can get out of bed everyday...that is a good thing. I suffer from left side pain...knee, hip, shoulder, elbow, neck and finger stiffness, ear and head pain. I have the brain fog and can't read very well like I used to as I forget what I was reading and it takes forever to even read an article in a magazine. It is estimated that I was bitten twice...once in my teens and once about three years ago. I am now 39 and feel like I am about 89. My husband and I have a saying I say to myself and him when he calls during the day..."it is a beautiful day...the boys are healthy and I am still alive. I definitely had to lower my expectations of myself...Lower expectations, less disappointment.
I am looking forward to the day when I am strong and healthy again. I just hope it is soon. My LLMD is planning on putting me on another dose of IV abx in the Fall if I don't start to get better.
So that is my story.
Nancy

Posted by broguearcher (Member # 5905) on :

Compared to where some people are, I guess I'm nearly normal and fully well. Doesn't feel that way tho.

I feel so sad for you guys..... what a burden to bear.... not being able to get out of bed...... constant pain.... incredible. At least the medications are now more widely available to people.

Posted by AZURE WISH (Member # 804) on :

My symptoms primarily pain and fatigue do not allow me to work or to do the hobbies or activities I like to do.... I cant even drive.

I consider my self lucky because there were many periods of time were I really couldnt walk or brush my hair.

best wishes