posted
Does anyone else feel like it is hard to know what all you need to do to get over lyme disease?? There seems to be so much we need to know and do.
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Yes, it is insane. I've been at this for 2 years w/never ending pain. I cry, I pray, I throw fits, I can't believe this is my life at times. To wake up everyday knowing I have to "tolerate" another day of agony rather than just live my life is hard.
But when I first open my eyes I try no matter how hard or what I feel going on in my body, I try very hard to adjust to a good attitude and think "hey, today may be the day" or "I am one day closer to being well". I have noticed how I start my "thinking" in the morning, sets the tone for the entire day. I swear to you positive thinking is everything with this disease and it can be the most challenging of all.
I was talking with a Lyme friend today and we both wonder if we ever will be well. At first we agree, we were hopeful because we were diagnosed, hoped to be well within months after a year it finally dawned on me....this is going to take time.
According to ILADS 1-4 or 5 years of treatment and sometimes open ended treatment is needed.
We also talked about the fact that if we got well, how we would be constantly wondering if and when we could relapse.
It is a scary, depressing disease...try hard not to "go there" just concentrate on today. I try not to let this disease "steal" my days with "wondering" and "worrying" about what tomorrow or next week or next year holds...it is very hard, I know. But all we can do is our best and keep pushing on and try to keep believing we can and will get well one day.
posted
What all do you need to do to get over lyme disease?
Testing: run lots of tests for: any and all parasites, immune studies, spect scan, hormone testing, liver, kidneys....ect
Treatment: High dose ABX through a Picc Line with the use of heparin. Beat all co-infections first. Use glutathione, extra fluids, antioxidants, and an alkaline diet for detox.
MUST use a variety of ABX to attack each form of the lyme, alot of people just take something along the lines of rocheprhin for months on end and then wonder why they are not well or relapse...
posted
Sick, I had to write it out by hand, study it .... then try to come up with a schedule. I did the best I could .... It took a few days or even a week, to come up with a schedule that works.
I keep some meds on my nightstand ... the ones I take first thing in the morning on an empty stomach and the ones I take before bed.
I keep the other meds on two separate shelves in the kitchen. They are grouped by when I take them. I know if a jar is on a shelf, I take it the time of day I take the others on that shelf.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Hi Sick, I also feel the way you do, being I am new at the protocol but not new to Lyme. I really didn't understand Lyme until I went onto LymeNet.
The knoweledge on here is just amazing and I am reading and researching daily. But, I have a hard time retaining all of it. Lovely Neuro to thank for that!
It's comforting to see that I am not alone or crazy because those two feelings are very stronge feelings when dealing with all we have to deal with.
What a wake up call when I realized that this is not just a year of abx's and I would be better. Now it's years of abx's and feeling like crap
I am realizing that to have lyme disease is to dig deep down into your soul and ask for comfort from within. We all have to really look at ourselves in ways that healthy people can never understand.
Our depth is on a deeper level than most because we need our depth to get through the day and remember we still are alive even though we may not feel it.
Feeling alive may mean tears or anger with some smiles through out the day. We also don't take for granted when we feel well, isn't that the most incredible feeling?! I cherish those days!
Posts: 101 | From NJ | Registered: Apr 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It's very hard, and takes awhile to get educated, as well as to figure out which weapons you'll use. It's like the military, they can't go to war with every weapon ever made. They have to choose the most optimal tools based on conditions for that particular fight. The same is true for us. Pick the most time proven, effective, cost effective, lowest risk weapons, then go kick some spirochette *** .
We need a lot of support along the way. Support systems are a must. An effective team of doctors takes quite awhile to build. A good G.I. or Cardiologist, or Neurologist, or Psychiatrist, combined with a good Lyme Literate physician, then good medications for your particular symptoms and on and on.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It's very hard, and takes awhile to get educated, as well as to figure out which weapons you'll use. It's like the military, they can't go to war with every weapon ever made. They have to choose the most optimal tools based on conditions for that particular fight. The same is true for us. Pick the most time proven, effective, cost effective, lowest risk weapons, then go kick some spirochette *** .
We need a lot of support along the way. Support systems are a must. An effective team of doctors takes quite awhile to build. A good G.I. or Cardiologist, or Neurologist, or Psychiatrist, combined with a good Lyme Literate physician, then good medications for your particular symptoms and on and on.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
With a defunct HPA axis and hypothroidism because of Lyme & Fiends, it's very difficult to juggle all my meds. Doing what each of my doctors want is a juggling act.
I have seven of those strips or pill lockers. One for before breakfast that I keep on my night stand. One for an hour later but still on an empty stomach. One breakfast food. One with lunch. Another for dinner. One for pain meds.
For travel, I buy those EZ-Y meds baggies. 50 costs $1.50 or something like that. It's a tiny Ziploc type baggie with a place to write on the time of day.
If I'm going anywhere, I dump each compartment into a little baggie for my purse. This way I've got all my meds in case I'm gone longer than I planned.
I keep a MS Word document of my meds in my purse, in our airplane, on the motorcycle and in the glovebox of my car along with a list of doctors and their phone numbers. There is also a copy of my 6 page typed medical history. Just in case!!!
I'm on 6 shots per day plus a feed bag of supplements and RX meds. Just for hormones I'm on: HGH, 2 kinds of thyroid meds, cortisol, DHEA, have estrogen and testosterone pellets implanted in my hip. I do one IM shot per day of Methyl-B12 and nebulize glutatione 3X per week.
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I make a scehdule - when my brain is less helpful what i do is
1. I clear the table and gather scissors, white paper, and pencils with an eraser.
2. I make a list of everything i have to take and how many doses a day
3. I make a second list of things that can't be taken near each other and how far they must be spaced. (if something is supposed to be taken at the same time i make a note of that too.) I also note if something needs to be taken with food.
4. i cut out a bunch of rectangles out of white paper
5. I write the name of each med on a rectangle for each dose. I make sure I have one rectangle for each dose of everything i need to take. If things are supposed to be taken together at the same time then i write them on the same piece.
6. Then i go back to the list of everything i need to take with the doses listed and add up how many times a day i need to take something.
7. Then I have to decide when my awake hours are and write a time on each piece . I try to include the times I usually eat (like 12 noon - lunch) and 6pm dinner to try to accomadate meds that need food.
8. Then I put the times on one side and rotate the med pieces around matching each med to a time(changing times if i need to) until all my doses of meds are accounted for, and i check my list make sure i have all the doses, and things that need to be taken together are together and things that need to be taken so far apart have been schelduled that way.
8. Then i write it down by hand then take it to the computer and type out. If something needs to be taken with food or away from something (like dairy) than i make a note as i am typing it up.
9. I then print out a bunch of copies and put one in every major room. (kitchen, bedroom, livingroom ) i have extra copies in case i go somewhere - i try to keep one in my purse always.
I have a pill container for the week and i stick one days pills in there. That way if i forget if i took it is easy to figure out. If it is not there i took it.
Also this way i only have to keep track of one thing instead of lots of bottles and i have to get up less. also makes leaving the house easier.
I know it is overwhelming maybe you could ask someone to help you make a scheldule if it is too much. I like having it on the computer cuz it makes it easier to make the little adjustments i usually find necessary.
posted
I have always had a scheudle too, now it is even getting more crazy - it's like a full time job to take meds/supplements at the right time and coordinate eating. I also can't remember what constitutes "an empty stomach" 1 hour, 2?
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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posted
Larkspur - empty stomach is 1 hour before food or 2 hours after food!
I have these scheduling issues also - and making a list does help, but it can still be hard to fit everything into the day sometimes. Posts: 261 | From Herx-ville!! | Registered: Aug 2006
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