I have been sick for a while...many symptoms and some of them are brain fog, trouble concentrating, bad memory. I am a database programmer, was out of work for a while, now am back to work part-time from home. I feel like I am not doing a good job. I is SO hard to concentrate. I feel like such a failure. I want to believe that this is due to Lyme and co-infections (I tested positive) but feel like I am making excuses. I have so much anxiety about doing my work.
Also, I feel like I can't make it another day with all these symptoms. I can't see my doc until October 14 but he already said he thinks abx will be too harsh with my sensitive stomach. I tried teasel and got so much die off I stopped. Same thing with small amount of probees. Aside from the symptoms mentioned above, I wake up every day with heart racing (I have POTS), fatigue, headache, backache, abdominal distention that gets worse after eating, red/burning eyes, swollen eye lids, and more. I wake up wondering how I am going to make it through the day. Wondering how I am going to eat normal amounts of food despite the insatiable hunger I have.
I am sorry to be so negative but I am hating life right now. I don't want to die and I am not suicidal, but I don't want to live this way anymore.
Kania
Posted by Dekrator48 (Member # 18239) on :
Dear Kania,
I'm so sorry that you are feeling so sick.
So many here have been in that same situation and have gotten better, so don't give up hope.
Just take one day at a time and we will be here to support you.
Have you made any dietary changes like removing sugar/high fructose corn syrup and gluten from your diet? It can really help alot.
12 Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.
Posted by glm1111 (Member # 16556) on :
You should consider the possibility that you have parasites. Can be causing your insatiable hunger because they eat all of your nutrients and can cause the bloating you describe.
Google parasite symptoms and check out the parasite threads running in medical. Parasites/worms can play a MAJOR role in Lyme disease.
Your doctor may not be eduacated in this arena and you might have to treat yourself. Antiparasitic herbs and salt/c saved my life and eradicated many parasites.
Also consider taking digestive enzymes when you eat.Super Digestaway have worked for me and are also antiparasitic.
Thirty days is not enough for a cleanse such as Parastroy. It can take many months and persistence is key.
Gael
Posted by kam (Member # 3410) on :
Hugs Posted by BleedGreen (Member # 33468) on :
Don't give up! Hate this filth, despise it. I let my hatred for it give me a reason to put up with the diet changes, ridiculous amounts of supplements and abx, and herxs.
Give it a little time, you will start to feel better after starting treatment, though it may take a little while. It took me a few months until I woke up one day and realized I felt great. I also realized how sick I was and will do anything not to get back to that point.
Some of your symptoms will disappear fast, some will persist for months. My persistent ones are my herx and it has gotten to the point where I sometimes don't realize I'm herxing. In time they will start to fade. Sometimes they do hit me hard again, especially fatigue but its much more rare now.
Read about the different herbal and parasite treatments, maybe try that until you can handle abx. Keep in good contact with your LLMD and let him/her know what you're feeling. Stay in contact on here to rant, complain, rage, or whatever you need to do. Especially if you have questions, there are many experienced people on here willing to help.
Good luck and don't give up!
Posted by Dogsandcats (Member # 28544) on :
I am sorry you are going thru this. It is a horrible disease.
Keep in contact with us, the support will help.
My prayers are with you.
Posted by JeniferM (Member # 31996) on :
I completely understand the feeling like a failure thing. And, yeah, I think it's totally related to Lyme. I'm a web programmer and there are days where I can't think logically to save my life. Need to create a new function? Yeah, not gonna happen on some days.
There are a lot of days where I feel like a complete idiot compared to the other people in my department. But, I'm having days where the brain is clear and I think "now THIS is how I made it through college!" And those days I don't feel stupid anymore.
I'm grateful that I'm no longer in school and that I have the ability to shift my workload to do more brainless things on those days when I need to. Maybe you can come up with a way to do that? Like, hang on to the more maintenance types of things for days when you're not able to think as clearly?
I've also found that it helps to do most of my communication via email. That gives me time to read through what people are asking for and compose a response that makes sense. This eliminates those phone calls where you're put on the spot for an answer and your Lyme brain can't respond quick enough, or coherently enough, for others.
With those "bad memory days", another thing that I end up doing is keeping a really detailed to-do list. There are days where there's no way I'll remember where I left off the day before. So, before I leave for the day, I'll type up a note as to what I need to do when I get in and where I left off. I did that last night, actually. Saved me a lot of time this morning trying to piece it all back together. Lyme waves kill my short term memory something fierce!
Posted by 2doggies (Member # 33118) on :
@All - Thank you all so much for the responses. This has helped me so much.
@Dekrator48 - I went low carb (no grains) in 96, Paleo in 2003, and GAPS since 2008 so I am good on the diet part.
@glm1111 - I have looked into parasites extensively and have done several cleanses in a row. Oddly I gain weight easily. I figured if parasites are getting my nutrients I would be losing weight?? But I too wonder if there are still parasites.
@JenniferM - thank you for mentioning that. I do feel like such an idiot most days. Sometimes beginner level code is hard for me and I have to look up syntax. Very frustrating.
Posted by JeniferM (Member # 31996) on :
It's terrible, isn't it? There are things I've done routinely for years and can't remember how on some days. Just this morning I completely spaced on how to start a code block. The most basic thing in programming and I couldn't remember it. sheesh. This illness really sucks.
Oh, and the insatiable hunger - I get that, too. There are times when I can eat and eat and eat until I make myself sick, but am still hungry. I also wonder if we're missing a handful of vital nutrients that we're trying to fulfill and just aren't getting enough of in food? I've been pondering this week if a good multi-vitamin might help with this or not.
Congrats on being able to stick to the diet! I haven't successfully conquered that, yet.
Posted by Lymetoo (Member # 743) on :
Reaction to probiotics and bloating after eating.... YEAST.
hugs to you!
Posted by BleedGreen (Member # 33468) on :
I can't keep weight and my wife can't keep it off. Both have LD and obviously candida, no cos. I have two strains of LD though.
Posted by 2doggies (Member # 33118) on :
JenniferM - yes, I can relate. I try to keep telling myself that I will be a good programmer once I am healthy.
Lymetoo - I was up to 250 billion, donated blood in April, and haven't been able to get back on. I tried 1/2 billion the other day and the next day I thought I was going to die I felt so awful. As for the diet, I live on meat, fat, a few low starch veggies, bone broth, and egg yolks. That's about as anti-candida as it gets.
Posted by daisyrlb (Member # 15686) on :
If a person has cancer and they keep on with life doing what they can, the best they can, they are labeled a Cancer Survivor, even if, and when, some of those days are spent in bed.
I would say that 2doggies and all the rest of us who keep on with life doing what we can, the best we can, we are Lyme Survivors, even if, and when, some of those days are spent in bed. May you be encouraged...you ARE a Lyme Survivor!
PS: If a person has Lyme Disease, or even suspects it, do not give blood. Lyme Disease and Co-infections can be passed on to others through blood. It is believed that my husband, GWB, got LD and Co through blood he received after surgery.
Posted by 2doggies (Member # 33118) on :
Hi daisyrlb,
That was very encouraging and is so true. Thank you!!
As for the blood donation, this was back in April before I knew I had Lyme. I just found out about 4 weeks ago. I really wish I hadn't donated blood but I had no idea.
Kania
Posted by daisyrlb (Member # 15686) on :
Kania, Thankful you were encouraged.
About the donation...that happens. Don't take it to heart as you didn't know and there is nothing you can do about it. Perhaps that blood will be checked for "stuff".
Have a great day!
Posted by BackinStOlaf (Member # 23725) on :
I feel the same. Don't want to die, but don't want to suffer either. I haven't been able to breathe well for 9 months already- it is pure torture
Posted by glm1111 (Member # 16556) on :
Weight gain and weight loss are both symptoms of parasites and a couple of cleanses are not nearly enough. It can take months or longer of persistent antiparasitics to get rid of parasites. You might want to reconsider.
Gael
Posted by Dogsandcats (Member # 28544) on :
2doggies,
There will be better days. If I didn't write down everything-the minute it happened-whoosh...gone into the Lyme vortex.
I still use my notes from before cause both short term and long term memory take turns going on vacation from my mind.
Weight gain? Hunger? At night I get so hungry...it is almost like I haven't eaten all day. I burn out lites in the fridge cause I stand there and stare-waiting for the magic food to pop out and take away the hunger.
Posted by 2doggies (Member # 33118) on :
Gael - which parasite cleanse do you recommend? I have done Paragone from Renew Life and I have done Humaworm. Neither one did a thing for me while I was on them while others supposedly found relief from using them. Oh, I also used Oil of Oregano with Humaworm. Babesia is a parasite - right? I need to look that up again.
Dogsandcats - yup, I can so relate. I need to write everything down these days, set reminders, post post-it notes, etc. And this horrible hunger. I am so, so, so tired of it. Everyday is such a struggle - to try and eat normal amounts of food when I feel like I haven't eaten in days. I was thinking that's a parasite symptom but my last test didn't show any. I know they are hard to find though.
Posted by sbh93 (Member # 30429) on :
2doggies, keep the hope alive. I have a similar job and am so glad Jennifer gave some really good suggestions. I talked with my supervisor and am able to work a flexible schedule from home too, so I focus on working hard when my brain is lucid and doing the brainless things when it's not.
I use the outlook calendar kind of as my to-do list. I set it up as a taskmaster so it dings me reminders when I am supposed to be finishing up a task and starting another, even management/documentation-type tasks. I have a script of standard responses to deal with IMs that will require thought before response. These things have helped me function.
Posted by sbh93 (Member # 30429) on :
Forgot to say--for a few months early this year my family was urging me to go on leave, I was such a mess. I'm still kind of a mess and take sick days even when at home but the flares are starting to be a bit more predictable, I can plan around them a little. I am not in bed most of the time anymore and actually take a shower each day. It gets better.
Posted by 2doggies (Member # 33118) on :
Thank you sbh93 for your input. It helps. I am having one of those "worthless, sitting on the couch all day" days. What's interesting is that before I got sick it was hard to get me to sit down. Now it's hard to get me to do anything but sit around.
Posted by sbh93 (Member # 30429) on :
I know those days. I like to put on headphones and listen to music during thoe times. I find music to be a wonderful distraction from my symptoms. I have CDs everywhere of mixes of my favorite songs--car, computer, bedroom. Baths can be another great distraction and eases symptoms, but be sure to use a neck pillow or it will just make you notice your joint pain more to be in there.
Posted by JeniferM (Member # 31996) on :
I know those days as well. I used to be very active before the symptoms progressively got worse. In a way, I'm looking forward to the winter where my inactivity isn't as noticeable. Other people turn into more home bodies, so my sitting a lot isn't as obvious in comparison.
Posted by randibear (Member # 11290) on :
we only fail when we stop trying. but i understand completely. there are some days that you have to just scream to keep going. even waking up can be painful and you wonder how many more days you can go on.
but unfortunately for us, our lives have taken a turn for the worse and we have to just adjust.
for some it's not worth living but for others we try to do the best we can.
Posted by 2doggies (Member # 33118) on :
Well, I am having one of those days today. I don't know how much longer I can do this. I need some kind of relief or I am going to give in. At the same time I don't even know what that means. Eat whatever I want maybe, not care about my job and eventually lose it, stop taking care of myself??? I don't know. What I do know is that it feels unbearable right now and I don't even want to wake up tomorrow. When I do wake up, I just want the day to be over so I can go back to sleep and have a few hours of not dealing with "this".
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I like to put on headphones and listen to music during thoe times. I find music to be a wonderful distraction from my symptoms. I have CDs everywhere of mixes of my favorite songs--car, computer, bedroom. Baths can be another great distraction and eases symptoms, but be sure to use a neck pillow or it will just make you notice your joint pain more to be in there.