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Posted 8/1/2013 12:35 PM (GMT 0)
I am starting to feel like Lyme disease puts us in a circle, just keep going around, and around. I feel like I take two steps forward and three steps back. I was doing so well had the seizures stop for almost five weeks, then bang out of nowhere, they started again, and more frequent.

I am in pain all the time now, I haven't changed any medication, just the pain is horrible at times, I am forced to take pain pills. I don't have a pain doctor or anything so I take tremedol when it gets really bad. The last two weeks, I haven't wanted to around anyone, just kind of staying to myself , been in to much pain, and the seizures are making my legs not work well again.

I am not embarrassed of my cane or anything, I just don't want to keep having to explain to people that even though a month ago my legs were better, not I can barely walk. Also I have noticed when people ask me how I am doing, no matter how bad it gets, I just say I am fine, I really don't want to deal with questions, about why I am not ( fixed) yet.

I just feel no matter what treatment we decide to go with, we just have to keep trying, We can't give up. I know how rough it gets, and I am a very determined lady.

Just wanted to say Hi, I have made it to my computer today, so that is a good thing, I hope we get a cure for this disease soon.

Justme
Posted 8/1/2013 1:38 PM (GMT 0)
You were on my mind literally this morning and I was going to reach out to see how you were doing and here you are. God I'm so sorry and I'm in your corner! You will find a solution so the viscious circle can stop once and for all!

Sending prayers your way and don't give up!!!!!!

Much love!
Posted 8/1/2013 2:24 PM (GMT 0)
Oh Justme, I know how you feel. I am blessed to be doing as well as I am but it has been 11 days since I stopped antibiotics and I have been getting migranes everyday, worsening in intensity too. Yesterday I was so out of it I was supposed to meet someone to sell them something. A place I drive by every single day and I couldn't remember where it was. It was so stupid but so upsetting too.

I've started having deja vu, premonitions, weird stuff like that. Muscle tremors have returned though not bad and last night I couldn't sleep.

I've upped my herbs so I don't know if this is a herx or not but it sure doesn't feel like my typical herxes. I guess only time will tell for both of us. I'm still thankful for the good days we have justme. And think - months later we are both still here. That ought to count for something.

Posted 8/1/2013 5:04 PM (GMT 0)
Yes I am very grateful for the days I felt very good, I just don't understand why now It's hard for me to get out of bed, It's almost like I am starting from the beginning. I have been doing straight herbs, but I have been thinking to add some antibiotics to the mix.

I did get sick last time on the abx, but it could of been because I was the detoxing my body at all ( the doctor didn't tell me about ) , and I had a lot of die off.

I saved my bottle, and it will come in handle now that I don't have insurance, so I may be giving it a try. The way I have felt lately has just put me in such a funk, I don't feel like seeing anyone outside my household. Also I think because the seizures are coming on more often, I don't want to have to explain them to anyone anymore.

My llmd seen it first hand this week in her office, I had one while in treatment, and she said she had only seen something like that on the movie under our skin, it kind of freaked her out, my husband and I are used to it, it's been going on for so long.

This week we are going to try the foot detox kit, my doctor just brought one, so I am going to give that a try along with my regular treatment of Ondamed. We will see how it goes.

Thank you all for thinking of me, just having a rough time right now, I am not giving up until I find something that gives me my life back, it may not be the exact same life, but I am still fighting for it.


Justme
Posted 8/2/2013 4:32 AM (GMT 0)
Justme,

Please be careful and make sure any abx you take from your previous prescriptions are not expired. Some abx can turn toxic when expired - Doxycycline, for example.
Posted 8/2/2013 3:50 PM (GMT 0)
Justme, you are so right it is like a circle. Every time I have a good day I get excited and then the rugs is ripped out from under me. It is so hard some days I just cry and cry and don't want even my family to see me like this :(

I'm currently in a rough patch again and keep telling myself to fight and fight till the end. I want to break this circle and turn it into an outward spiral so someday I envision being launched back into life!

I will pursue every avenue and process I can to find wellness. Only goal I ahve in life right now. Amazing how things change in the blink of an eye...
Posted 8/2/2013 3:57 PM (GMT 0)
I always compare having Lyme to a game of Snakes and Ladders........up the ladder,just to go sliding down the next snake.

Tickled
Posted 8/2/2013 4:33 PM (GMT 0)
Tickled, that is a perfect description. I'll use his to help my family understand ;)
Posted 8/2/2013 10:11 PM (GMT 0)
Just Me,

just wanted to acknowledge your response to the Tort Claim/lawsuit business: thank you. also, as i read new posts it's always amazing how much we have in common. i'm doing pretty good right now; but went through a 2+ year cycle of depression, debilitating pain, brain fog, no energy whatsoever (boiling an egg was a big deal), etc. i won't list all the sx's because most everyone on here has 'been there... done that.'

i'm taking minocin (100mg bid) and fluconazole (100mg bid) right now & am feeling quite a bit better. also, after reading numerous posts about herbs & supplements (especially Trav's) am taking raw adrenal, thryoid supp., and pituitary extract. i know from reading other posts & Joseph Burrascano's 'Guidelines...' that B-12 certainly is an issue; Zinc, Mg, alpha-lipoic acid, CQ-10, etc. are recommended.

the main thing is: i had to tell myself to 'keep going' every day for over 2 years. 'Don't quit... don't give up,' was my mantra. That, and WIT: whatever it takes. the hardest thing i did every day was just get out of bed. felt like a 500 pound weight was pressing down on me & couldn't clear my head. high point of my day was going back to bed ; although i didn't really sleep & never felt rested. ever. might have put a gun to my head.. but don't own one. even taking a shower was too much.

it's like a bad dream/nightmare now; but i guess it could come back. 1 day-at-a-time is how this works; sometimes, 1 heartbeat. you are strong or you wouldn't still be fighting this. someone is going to come up with a tx for Lyme: probably some "cocktail" like AZT for AIDS. We just have to endure a lot. there aren't too many +'s with this; but it does teach humility, patience, and compassion.

If i was religious... you'd be in my prayers. as it is, you're in my thoughts & i'm inspired by your spirit. 'Don't give up... don't give in.'

Time2Act aka 'Seeing Green' (& red, blue, orange...)
Posted 8/3/2013 2:04 AM (GMT 0)
Oh Justme, I hope you're feeling better soon. Sending healing nergy your way!
Posted 8/3/2013 11:07 AM (GMT 0)
Were all in this cicle together !

TOM.
Posted 8/3/2013 11:44 AM (GMT 0)
Yes I checked the date, I still have about six months to take them, I just got so sick the last time, I have been doing herbs since January. I will make sure if I do them, this time around I will detox my butt off.

I thought I had the seizures kicked , almost five weeks without one, and then so many in one day, I couldn't even count them. I didn't change anything, so I can't figure out what happened.

Just been really painful, I don't sleep well, and my tolerance for everything is running thin. I found that some people can't handle us being sick, so they turn their backs on us. The ones that stay, can become angry, and it's very difficult to deal with.

I do try to be positive , I can tell you its very difficult with this disease. I am a fighter by nature, so I am not giving up, I just wish I had a few really good days in a roll, that would give me the little extra boost I need.

I was doing much better, less pain, less brain fogg, but it seems like with stress, and everything else going on around me, my pain levels are up to a horrible level. All of you are so sweet to answer my post, and we are all in this together , it's a rough circle to be in.

I hope everyone has a great weekend.

justme
Posted 8/5/2013 10:25 PM (GMT 0)
sorry just me, that u r not feeling well at the moment,

yes, it is like a circle, I feel that too

and like someone else said, a game of snakes and ladders, or chutes and ladder, same thing...

i go through times of being able to speak and then not

I don't know what the variable(s) is/ are
Posted 8/5/2013 10:25 PM (GMT 0)
i have a caregiver for now, and she could not make it today, last minute

so i tried to call for a cab, but could not speak right, and then the person end of line, asked how old i was, as i know she thought i was a kid, i could not give my address properly, this went back and forth

and getting no where, so canceled that, and

drove myself, it was not far,

so i was fine, but

this disease is frustrating, and you never know....

one day you can talk

or part of a day you cant

or part of day you cant walk

it is so bizarre...


but i guess we are in this circle together , like Ocala said


i felt that for a long time, trapped in this circle


one day we will all break free!
Posted 8/5/2013 11:47 PM (GMT 0)
Yes some days, I look and act kind of normal, and some days, I freeze up, and I can't move. It's a strange disease.

When I am well enough I research different ways to get better, I write stuff down ( I lose my notebooks ), but at least I write them down.

I lose time, conversations, and even days of the week. The worst thing is some times when someone asks me a question, and I can't answer or I can't get out what I need to say.

I think that we can all get well, it's just may take something different for each of us, because we are all different. I am going to continue to fight.

My llmd did a foot detox today, and what came out was amazingly nasty. It smelled of copper, to the point she had to open up her doors to air it out.

I am not sure how to add a picture on here, but I would so you can see it, I think detox the body is the way to go, I am doing everything I can to detox.

justme
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Posted 8/6/2013 3:23 PM (GMT 0)
I love this quote, "one day we will all break free!" WellBeautifulSpirit when you're better you should right a song and that should be the chorus :)
Posted 8/7/2013 1:11 AM (GMT 0)
 

Just me, how are you doing today?  You have all of our support.  We can do this together.

 

Posted 8/7/2013 11:57 AM (GMT 0)
I had two seizures this week, the one on Sunday was not so bad, I was in a car, not driving. That one didn't last long.

The one last night was pretty rough, I feel like until I can get these seizures under control, I can't start to heal. Once they happen, I fall backwards, everything is stiff and painful today. I do the best I can, I eat gluten free, stay away from sugar, take my herbs, but I still have really bad flare ups. I know this Lyme is going to be a tough cookie to fight against.

After going down to public aid four times, they finally approved me for a state card, it won't cover much, but at least I can get my blood drawn to see where my vitamin levels are. In Illinois unless I can convince the state that I am disabled, I won't get a disability card, we do have one doctor here that takes the disability card that I know of, so If I don't get better, I may have to apply for that.

The thing is with Lyme disease its going to be a very long process, I thought by now I would be able to go to work, but that is not the case. The seizures come on when ever they want, and then the pain, knocks me down for a few days.

I haven't given up, I still try to research as much as I can, I stepped up my detox, I am trying everything I can. Some days I don't know if I am coming or going.

I am here for all of you , if you need someone to talk to, sometimes, I can't get down the stairs to the computer, so email me if I am not on here for a few days.

Some days I get sad thinking about my old life, but then I remember , I would never have known how strong I could be unless I went through all of this. Also I would have never met all you great people either, so I am thankful everyday, I have another day to fight through this horrible disease.


Good morning, wellbeautifulspirit, I wanted to thank you personally.

justme
Posted 8/8/2013 12:47 PM (GMT 0)
I wasn't able to get back downstairs yesterday, just seizure after seizure, I called my LLMd, no return call. I am thinking I may take some doxy, I haven't for months, but I am getting worse right now, and maybe with that and the herbs it will kick the crap out of the Lyme.

My doctor does not believe in abx, but at this point I am running out of options, in to much pain to think straight.

justme
Posted 8/8/2013 4:43 PM (GMT 0)
I'm seriously praying for you, everyday in my prayers at home I rattle off a list of people who are sick and or shut in and you're on that list as well as others on here. There has to be an "aha" moment to what you're going through.

Do you have a neurologist? I wish you lived here, my neurologist is super and he knows Lyme which is so important.

You're so humble and grateful and that will take you a lot of places. The one place it will take you is your complete and total healing!

Don't give up! I won't give up on praying for you! Blessings.
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