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Feeling better or just used to being sick?

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Posted 2/19/2018 5:44 PM (GMT -5)
Anyone feel like this? Im still walking like a drunk and look like a skeleton. But i remember telling my llmd 5 years ago i felt like "the easiest task is like climbing a mountain". But now its like a smaller mountain.
Posted 2/19/2018 5:54 PM (GMT -5)
I vote “getting better”

I know I didn’t get used to being sick.

I know I have improved because every now and then I have a bad period of time and realize that’s how I used to be on a regular basis. For me improvements are slow so it IS hard to gauge improvement.

The last symptom to leave me was pulsatile tinnitus - it ever so slowly got better over several months - I rarely wake up one morning and a symptom is just gone - they all generally slowly subside...uneventfully.
Posted 2/19/2018 6:18 PM (GMT -5)
I dont want to be used to being sick,but I will say that I tend to put up with my remaining symptoms.

Because I am working full time and then busy with household things, taking care of my dog and making dinner for my husband when I get home I think I just push through and not realize that yes...I'm still having symptoms on a daily basis.

Thankfully they are mild and not like they used to be ... but dang it..I just wish I could get to 100 %.

While I am grateful to be functioning at 95 to 98 % , at times I am just very tired of all of this.

Oh and while I'm complaining, I wish the muscle twitching that has returned would go away for good, it is just weird.

It might be a smaller mountain I'm climbing now but there are still many twists and turns on my road to
remission.

Have a good night or morning depending where you all aresmile Jo
Posted 2/19/2018 6:21 PM (GMT -5)
Jo - my twitching went away for many months and then it started to appear every now and then for a day or two.
Still haven't figured out why.
Sounds like you lead a busy life.
Posted 2/19/2018 6:28 PM (GMT -5)
All I can figure is that some of the changes my llmd makes is hitting the Bart more and that's why the twitching is back.

It does get discouraging when a symptom that was gone for months and the it comes back.

I'm hoping and praying you have more success going forward now with Dr J clinic. So happy you were able to go there.

Awww... we all have chores and things to do, I was just venting a bit.

Take care, Jo
Posted 2/19/2018 8:20 PM (GMT -5)
I got use to symptoms, but never confused it will "feeling better". That drunk/hungover feeling is one I definitely got use to during my journey(s).

But if you are feeling better, then you really are. You can always tell the difference.
Posted 2/19/2018 8:27 PM (GMT -5)

Girlie said...

I know I have improved because every now and then I have a bad period of time and realize that’s how I used to be on a regular basis.

So much truth here.

When I have a random week of mild herxing, I almost say "oh yea, I forgot about you (particular symptom), I remember when you were a lot worse and constant".
Posted 2/20/2018 3:51 AM (GMT -5)
I definitely getting used more an more to being ill
-and feeling a lot more well at the same time.
compared to there was some months in the beginning of 2017 I feel like I am in paradise...
Posted 2/20/2018 7:36 AM (GMT -5)
The last 20% of healing is the toughest. Like many here have said progress is slow and uneventful, and when some twitching or a cracking neck return, it's "oh crap" when will this end.

I had my annual physical last Thursday, which is usually uneventful and my only medical visit a year outside of lyme related issues.

This year my BP is high at 140/100 and my PCP found something on my thyroid that needs a look at with sonogram. Trouble is all the BP and Thyroid sx overlap my remaining Bart/Lyme issues.

Fun stuff..... I call it the "new normal"
Posted 2/20/2018 9:34 AM (GMT -5)
I would much like to hear if someone with illness experiencing heavy weight-loss have regained their weight and how long it took and how they might have done it.
I went from 85 to 65 very rapidly and although this is over one year ago now and feeling much better fysically I am still looking like a walking skeleton...
Posted 2/20/2018 1:19 PM (GMT -5)
i feel much better than before the treatment, 99% recovered and have very few symptoms left. right now i only have occasional muscle twitches, but more like one twitch per hour or something like that. very few.

all the other symptoms have vanished including all eye and brain symptoms that were terrible for me because they affected my ability to do desk office work.

i also gained 6-7 pounds while on abx, which is great because i was about underweight before...

to wrap up, im very happy with the treatment and the outcome. the problem is really, what's gonna happen when i will stop taking the antibiotics. i still have one month left... so im taking rifampin, mino, zithromax and hi dose serrapeptase (250,000 UI twice day) on empty stomach since september 2017, with not one single day stop...so till March that means 7 months...
Posted 2/20/2018 1:28 PM (GMT -5)
I concur with everyone. Every once in awhile I'll drop from 98-99% to 95% for a few days which sounds silly and something I shouldn't complain about, but after dealing with this for so long with long periods of better and relapse, I think it's common to get frustrated.

So the occasional calf twitches again or burning sensations in my legs I try to roll with when they disappear and come back every so often and I just keep treating.

Typically, when this happens I now think something else has been introduced and changing my homeostatsis. For instance I started BEC2x spray a week ago and then I dropped to 95%. Or maybe it was my 6 yr daughter getting the flu (during her birthday party of all times!) and I am fighting off some version of that. Who knows.

But is a good reminder of how far I (and many of us) have come!

Jason
Posted 2/20/2018 7:58 PM (GMT -5)

JasonSinis said...
I concur with everyone. Every once in awhile I'll drop from 98-99% to 95% for a few days which sounds silly and something I shouldn't complain about, but after dealing with this for so long with long periods of better and relapse, I think it's common to get frustrated.

Yes, I can totally relate to this. When I drop 5% from 90% to 85%, I get annoyed. But I then have to remind my self how much worse it use to be and I need to put it in proper perspective. And the drop only last like a week (not months).

If the 0-50% me could see me getting annoyed now I would probably smack myself.
Posted 2/20/2018 9:32 PM (GMT -5)

MooseSafari said...
I would much like to hear if someone with illness experiencing heavy weight-loss have regained their weight and how long it took and how they might have done it.
I went from 85 to 65 very rapidly and although this is over one year ago now and feeling much better fysically I am still looking like a walking skeleton...

I lost over 20 lbs between Aug15-Feb16. Then went on an elimination diet (one of my symptoms was sudden onset of IBS-C) from Feb-Sep16, which left me emaciated and feeling like I was starving to death. I had gotten down to 87 lbs. In Oct 16, I chucked the diet to the wind and ate whatever and as much as I wanted for 6 months. I got up to a whopping 91 lbs in 6 mths. After that first 6 months, my appetite waned but I still kept eating whatever I wanted. Now I'm up to 95 lbs and feel fat. (I'm 4'11" and yes I really do feel "full" at 95 lbs. If I keep gaining, I'll start to look like a butterball turn )

In addition to losing so much weight, my body also morphed numerous times. When I was 87-89 lbs, I did not recognize my own body. I had been that weight before when I was younger, but this time my body looked and felt so different. My muscles and bones felt weird. Even when I was 89-91 lbs, there were times in the shower when I'd look down at my legs and my legs and feet looked fat. It took months before I realized I had edema (swelling) in my legs and feet. I thought I was seeing things lol.
Posted 2/21/2018 1:32 AM (GMT -5)
mpost, would you be okey with opening a new thread when your treatment is coming to an end and give some information of your experiences then? That would be very interesting to hear.....
Posted 2/21/2018 2:12 AM (GMT -5)

MooseSafari said...
I would much like to hear if someone with illness experiencing heavy weight-loss have regained their weight and how long it took and how they might have done it.
I went from 85 to 65 very rapidly and although this is over one year ago now and feeling much better fysically I am still looking like a walking skeleton...

I went from 138 lbs to 124 lbs in a few weeks when my Lyme symptoms started.
I was skinny and my muscles were all loose - couldn’t flex them. It was strange. I also lost collagen so the backs of my hands and my feet look like a 70 year old.

That was April to June 2013.

I started treating in July 2014 and by dec I had gained a couple lbs and by summer 2015 I was at 130.
I’m now 135 and that’s where I wasn’t to stay.

My hands and feet still look awful
Posted 2/21/2018 4:12 AM (GMT -5)
Well, I guess as long as the head-pains and other stuff not occurring back I am fine with the weight-loss. I am on a strict diet though, changed the carburators to fat, protein and vegetables. It works okej but I am feeling hunger and tiredness a lot.
Girlie, did you pick up any useful hints diet-wise during all your hard experiences...?
Posted 2/22/2018 5:40 PM (GMT -5)
I lost way too much weight on a very experimental and ill advised treatment. My sodium was way too low, but when it finally got back to normal I was able to gain most of the weight back. I was still stuck a little bit underweight for a while, but I finally gained the weight back. I think the GAPS diet really helped me gain the rest of the weight back. My problem is that lately I seem to keep gaining weight. My metabolism feels like it took a nosedive all of a sudden.

As for weather you are actually better or not- I can tell I'm really getting better when I can do more things without feeling tired. For a while thought I was feeling better-but I was really too sick to leave the house. I think I was getting a little bit of delusional thinking there.
Posted 2/22/2018 7:41 PM (GMT -5)
Today I dusted, vaccumed a 2-floor house, cleaned both bathrooms, did laundry, fed and took care of cat, all without food, til 4pm. As soon as I eat I feel worse. Dizzier and more exhausted. It was a burger on gluten free bun and salad. Only weigh 110 lbs. My top weight when i was healthy was 120. I do sets of 50 pushups throughout day because all I do is lie on the couch all day. Also hyper anxious to leave the house.
Posted 2/23/2018 3:40 AM (GMT -5)
Sefr, that is quite my feeling too some morning I can feel almost totally well until I eat something.

I will try the sodium-advice, very useful advice, many thanks. Any hints of special diets and food containing lots of sodium?
Posted 2/23/2018 2:36 PM (GMT -5)
Trying to get back into sketching..temporarily keeps (whats left of) my mind off of things..here is my latest sketch! Not as precise as B.T. (before tick)
app.sketchclub.com/user/24459794#/sketch/10976431
Posted 2/23/2018 4:19 PM (GMT -5)
I usually feel worse after I eat also. I skip breakfast and sometimes lunch too. After I eat I usually feel more tired and anxious. I don't get anxiety-except I feel worried after I eat. I get worried about the dumbest things, but then it goes away after a while.

I would put sea salt on food -regular salt isn't supposed to be so good. And I really don't know that increasing your sodium intake would help you gain weight, unless your sodium was low in the first place. I think my weight loss was mostly caused by the treatment I did that didn't work. But I really don't know what caused what.

I've tried a lot of different diets, and I sort of just stuck with whatever made me feel the best. I don't like diets with a lot of grains and starches in them-that's mostly what I ate went I went vegetarian for a while. I also found that some gluten-free grains bothered me more than wheat did. The GAPS diet helped me the most-but I think it was because I was so sick for a while. I had to eliminate pretty much all starches to get my system back to normal.
Posted 2/23/2018 10:17 PM (GMT -5)
Thanks, I didnt first realize what sodium was, kinda lost in translation. thought it might be some special kind of excentric herb or something. The swedish translation is natrium so it would be to step up more salt then and see if it works.
i just have begun to use baking soda and are very suprised about the result. theese last 2 days i have never had this appetite for a very long time.
Did anyone here try baking soda with positive result?
Posted 2/25/2018 4:14 PM (GMT -5)
I know baking soda is supposed to calm your stomach. I tried baking soda once, and I don't think I felt any different.
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