posted
This Lyme is almost like being in the Twilight Zone.
My main problem is pain. Last night it kept me from sleeping. I have a lot of times that I can't get to sleep.
I laid there in bed very quietly. I decided to take a mental inventory of everything at that moment that was wrong.
I took this mental inventory begining with my feet. This was where those sharp little 'quickie' pains were shooting around the top of my foot.
I wiggle my foot, reposition my foot, rub my foot with the other foot, and nothing helps. Then I notice the other foot is going to begin the same little 'quickie' pains.
I also notice the bruisy feeling in my left calf. The bruisy feeling feels like someone just punched you and you are feeling the after glow of the punch.
I feel this bruisy feeling not only in my calf, but also my upper arm and around the wrist area and up along the inside of my arm.
There is also this annoying burning sensation at different parts of my body. One is close to my ribs, my hip, and part of my arm and also a couple of my toes.
I also notice that the 'quickie' pains in my foot are changing to the needles and pins pains. When you foot goes to sleep you feel those needles and pins. That is what it feels like.
I feel them going up and down my foot and leg.
At the same time, I feel like there are 'critters' crawling all over me. I know that there aren't any 'critters' but it does feel like you have ants or something crawling on you.
Then there is a quick pain that hits the head above my left eye. It happens very fast. Headache here and then gone. I guess those could be called shooting pains, but it is a little different that the other pains.
Now all of this is going on, and my ears are ringing, hurting a little. Keep thinking I am hearing stuff. I raise up out of bed, staring down the hall.... knowing that my doors are all locked. Windows are locked.
Still I keep hearing things. So I do get up a couple of times to check only to find that the ice machine does work and the noise I keep hearing is the ice dropping.
This all goes on until about 3:00 in the morning and somehow I drift off to sleep.
I wake up tired and go to work. One of the things my doctor tells me is to be sure to get plenty of sleep and do not get behind in your sleep.
Just interesting how many things that can be going on at the same time.
Posts: 213 | From Tennessee | Registered: Jan 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Are you getting proper combination treatment with an ILADS educated LLMD? Have all tick-borne infections been considered?
Taking proper support for liver & adrenals? Liver support is key to pain reduction. It's essential.
A gluten-free and dairy-free diet can also be very helpful.
Just want to be sure you are getting treatment. What you describe is very common for those with lyme, during all phases, really. "Twilight Zone" describes it very well.
With proper treatment and support, this can get better. Really. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
so, true... and the saddness continues, I am sure many of us have wrote the same, yrs back.. and nothing is changed..crazy they are that don't believe US untill someone dear to them is effected (get Alka selzter Gold) ...something big needs to happen where at 56 i don't believe there will be a CDC response in my life time..)"
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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I am seeing Dr. C in Mo. I think he is an all right doctor, but he isn't as aggressive as some others.
I will be seeing him again in August and I think he will be as aggressive as I allow him to be.
If not, I suppose I will seek elsewhere.
I have not had Lyme for years and years. I was bitten in 2010. I am hoping that it is possible that it won't take an extremely long time or hopefully extreme measures to get over this disease.
I am probably too hopeful....
I know I am learning something everyday and mostly from reading all of the posts here.
I have downloaded lots of info, and also "Topics In Advanced Lyme".
I have read several books, including "Everything you need to know about Lyme Disease" written by Karen Vanderhoof. Plus a couple of other books.
Lymetoo has great respect for Dr. C. Plainly, he believes in taking things slow.
At this time I am taking Zithromax. I have taken Doxy and Ceftin (each for six weeks apiece)
I am also drinking lemon water daily (about three lemons per day), Taking Vit. C, Vit D, Green Tea Decaf capsules. I am taking Nystatin. I am also taking Magnesium Glycinate.
When the yeast gets too much for Nystatin, I take Diflucan for about a week to get it back under control, then go back to the Nystatin.
I am unable to use salt/c. I have a problem with water retention. Always have had a problem with that.
But, I have taken Parastroy. And I intend to get on it again soon.
I am also going to take the initiative and find out what antibiotic goes well with Flagyl and take both of them together.
I understand the concept of the cyst forms and the spirochetes.
Otherwise, I am begining to believe that we have to cure ourselves with the knowledge we obtain...which in my case will def be a lot of trial and error.
My pocketbook is very thin. I have to make every dime count and I intend to get well one way or another.
I may be slower getting there than some, but I will get there. I am determined.
Today I am determined. There are other days that I just really don't care anymore. But today I am determined!
Posts: 213 | From Tennessee | Registered: Jan 2013
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posted
Oh, I forgot to comment on the gluten free diet.
I tried that for two weeks and never could tell a difference. I am sugar free (most of the time). I tried not eating the "nighshades" and that didn't do anything either.
Dairy free...I have not tried that. I think I will read up on it more. I don't indulge in a lot of dairy, but I do like my cheese. Hate to give it up!
Posts: 213 | From Tennessee | Registered: Jan 2013
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's important to be gluten-free, even if it does not seem to "cure" everything or if you can't tell a difference in a short time (2 weeks is a short time to determine).
It can take many months, even up to six months, to see improvement (though most can determine some relief sooner).
Some think they are gluten free but it can sneak in, even in lip balm. Anything we put on our lips is food, really, and it matters. But gluten can also hide in foods that we would not expect, even if they are marked gluten-free.
You report many symptoms that can be tied to gluten issues. All kinds of pain and neurological symptoms can be affected by gluten, even for six months after ingestion (for those with celiac).
As long as someone is ill (as you are), IMO, it's important to be gluten-free. This is not to make life harder but to give the best chance for treatment to work. It's very hard to reach a good solid remission, very hard. Not all do so.
We need every advantage we can get. And that includes avoiding gluten, IMO (I've done a lot of study on this topic for personal reasons of celiac but also - for those not a genetic celiac and who are ill - still important).
Gluten could be contributing in ways that are not evident and many LLMDs really want their patients to avoid it. There are so many extremely important reasons for this.
After a solid remission of several months is going strong, some whole organic foods that contain gluten may be able to add back into diet if one does not have genetic celiac.
As for cheese, you might try GOAT CHEESE or SHEEP CHEESE (from as close to home as possible, free grazing on organic land, and no additives).
Many do better with sheep or goat cheeses than with it from cows.
First, see the links above and find out if goat or sheep milk acts differently on the immune system. Cow dairy can "gum" up the immune system, according to the author of the book: "Don't Drink Your Milk"
ANY Foods that cause phelgm to develop in sinues, throat or ears should be avoided. -
[ 07-10-2013, 05:26 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A "cheesy" taste in some recipes can be attained by using organic MISO. Just be sure it's not from barley as barley contains gluten.
Put miso in just before serving. Too much heat can destroy the good enzymes.
WHITE MISO (if not from Barley) can be added to PESTO, top off your pasta sauce (with Tinkyada's gluten-free pasta once in a while, as it's a bit refined for every day) . . .
Miso is soy, so those who must avoid soy would also avoid this. However, for others, just be sure it's organic so it's not GMO or full of farm chemicals or additives.
And for those who are okay with soy, don't consume it day in and day out, multiple times a day in all kinds of forms. We were never intended to drink glass after glass of soy milk or eat tofu or tempeh for every meal.
My favorite. If your grocery does not carry, search to see where you can buy it or ask your grocer to stock it:
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The
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