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Posted 12/20/2009 9:14 PM (GMT 0)
i am very alone right now and scared, can someone please talk on the phone? cajungrl, please or someone...
Posted 12/20/2009 11:06 PM (GMT 0)
Did you talk to someone yet? Are you ok?
Posted 12/21/2009 12:15 AM (GMT 0)
feeling alone could be the time of year. The holiday blues. If that is the case I know how you feel as I'm in the middle of that my self. Not real sure why but it seems real strong. I find it helpful to post here and to read what works for others even if I can't here them. I've been trying to get involved in some group activities in an organization to take my mind off things but haven't been successfull yet. I take medication for depression and it helps at night but not so much during the day. Of course I've been real sick the last two days so that hasn't helped. I'm suppose to go to the 1000 islands the day after Christmas and spend it with my sister and I'm so trying to build up to it. So do you know why you feel so alone? what's going on for you.....I hope this has helped you some...
Posted 12/21/2009 6:03 AM (GMT 0)
I sent you an email.
Posted 12/21/2009 8:31 AM (GMT 0)
Thanks for the responses, cajungrl i will check my email... linx i am scared b/c of my crazy symptoms and it makes me feel very alone over here- especially when i'm going "nuts"... i took a xanax today and that helped- it made me drowsy but it did help. I just would prefer to not be addicted to it. Anyway, i got spooked b/c the tendon reflexes i get are listed as symptoms of MS and ALS. I have a lot of crap going on in my body and it sends my anxiety through the roof. The xanax took away my crazy thoughts for today- but the symptoms were still there- minus the bloated head feeling- possibly anxiety- but I am trying to come to grips with the fact that this may be a long journey and i am feeling things that may be atypical for lyme. There is just so much involved with this disease- co infections, parasites, viruses... i just don't see how we are supposed to address it all. and i'm having a tough time deciding what to do about treatment.
Posted 12/22/2009 11:13 PM (GMT 0)
Hi finding,

Sorry you are feeling so overwhelmed.  I would suggest not looking at MS, ALS, and whatever other "syndromes" are out there because that will only bring you down and spook you.

Try to think positive and only address one thing at a time.   If you try to address everything, you probably won't accomplish much as it's just way too overwhelming.

Focus on the "now" and tell yourself that you will get better!   I believe half the battle of this disease or any disease is how we deal with it.    Everything is a choice, we have the choice to think positive or just the opposite... 

Hang in there,

Denise

Posted 12/23/2009 12:27 AM (GMT 0)
Denise, i'm going to try hard... but with today's results i am not sure what to think anymore. My blood pressure was very low- the cardiologist thinks it's b/c im dehydrated and not eating enough- and i'm still losing a lot of weight. Anyway, my test that i was asking about on here was a urine test- it showed high levels of protein in my urine. I don't eat enough protein for the levels to be that high...the only other place that could come from is my muscles... again pointing to ALS, unless MS people have this problem- unless any of you have had this problem? Please respond. When i looked up the tendon reflexes i get and the internal twitching/popping in my fingers- even that was an ALS symptom.
You are right i shouldn't scare myself more but the test results are quite disturbing, one of my first symptoms before going to the ER when i first started getting sick was that i felt like something was "missing" or had colapsed in my gut... i had no explanation for this strange symptom... in reading Dr. J's book- i have experienced the "worming" of the muscle especially in my hip/buttok area and now there are dents around there. I have not noticed any other dents but the twitching goes on..
Posted 12/23/2009 2:46 AM (GMT 0)
I just need to shut up and sit down. That was good advice Denise, i must find a way to get it through my thick skull.
Posted 12/23/2009 11:30 PM (GMT 0)
Hi finding,

Just wanted to say that I always had low blood pressure, it's no big deal, much better than having high blood pressure!  Tests are just tests, I bet if you went to 50 different doctors who did the same tests, you would get 50 different results.

Sounds like you are stressing yourself out and you need to try to relax. 

Are you detoxing every day?  Have you ever meditated before or tried yoga?  This may help.  There are some really good meditation dvd's or cd's on the internet.  Really calms you down.. 

Denise

Posted 12/24/2009 7:08 AM (GMT 0)
Finding - How are you feeling today?
Posted 12/24/2009 5:40 PM (GMT 0)

First of all MERRY CHRISTMAS- i came back in here to edit this b/c thank God i'm not too far gone with fear that i've forgotten what time of year it is!

Well yesterday i was doing okay- today i'm a little keyed up- my little twitching in my fingers and arms that has been going on since i started humaworm is still going and my hands hurt. my doc is rechecking the urine specimen- doesn't seem real worried about it especially since it was my time of the month when i took the sample (very silly of me) lol anyway, i'm trying not to worry about things like ALS. I had been doing good- put it out of my mind but the "tendon reflexes" i think i'm getting are listed as a symptom and it's a bit discouraging as i've had these for a little while- i really can't tell if its my tendons or what but my hands are a bit sore today. Thank you so much Denise and Willowrose for caring
I want to be tested through a specialty lab for parasites so i'll know specifically what i'm dealing with but my husband is giving me a hard time- i mentioned to him how much that lab metametrix costs for testing and he says i'm not thinking straight by wanting testing through them- since we are so low income right now. I have an appt w/a natural doctor on the 13th and thankfully she's agreed to split up the cost of the initial consult but it will still be a lot for us. I feel like i have a lot working against me.
no one i know has been able to describe the tendon reflexes i get- at least the way i feel this little twitching in my arms and hands- actually willowrose i think you had mentioned something like it but i can't remember. i would just like to know what it means. I read somewhere ALS people lose function of their arms first sometimes and get hyperactive or deep tendon reflexes. i don't notice any real loss of muscle tone except in my hip/buttock area. Maybe i'm being very irrational about this; i hope i am, but fear is so real. You can fight it but when you are in the middle of it- it's terrible. My morning yesterday had started out thinking i might die- i felt so dizzy from my blood pressure being low but thankfully it raised during the day as i drank more fluids and ate- i was getting dehydrated according to one of my tests- and i was barely eating (which has furthered my weight loss- it used to be that i would eat only salad and not lose a pound! now with lyme it's just falling off) - yesterday though i ate 3 meals which was a big accomplishment for me. I did have a lot of twitching yesterday though- i'm hoping this will improve. Only thing that helps a little is the magnesium.

So i was on the phone today to order the cowden stuff w/nutramedix but was discouraged b/c when i asked about any products they have for parasite cleansing- she said she couldn't not tell me b/c they are restricted by the FDA about making any medical claims.  at least she was honest- but it does leave me feeling very much like a guinie pig if i try anything on my own besides abx.   i had felt relief yesterday about finally deciding what to try and now today i'm confused again. My counselor has lyme- or "had" it and she used samento in conjuction w/ abx but she suggested i get on some higher doses of vit C.  i had only been taking about 500 mg.  Her treatment involved intravenious vit C.  Anyway, i feel very confused at the moment- regular stool testing sucks and going through a regular doctor for that would be almost pointless (something i tried to explain to my husband) I don't mind doing perscriptions for whatever i'm dealing with but i have to know what i'm dealing with first. and as bucci said- it's 395 with that specialty lab. Sorry this post is sooo long!

Posted 12/24/2009 7:28 PM (GMT 0)
Finding - Merry Christmas to you too. You are right, at the end of your post, when you say you need to know what you are dealing with first. You are trying to attack on many fronts at one time. Maybe it would be less stressful to pick a thing, work on that, and then go from there. You've been worried about ALS for some time now - are you going through testing for that? Is that why you are seeing the natural doctor? If so, maybe you could put your fear about it on a back burner until you have some answers. Nothing is going to change significantly on that front in a couple of weeks (until you have your appointment and maybe get some lab results). If you want to deal with the potential parasite issue first, maybe just selecting a well-recommended course of action and taking it would be more beneficial than spending a lot of up-front time investigating and testing. If I were doing a parasite cleanse, I'd treat for the most common ones first and then, if I thought I needed it, I would investigate further. You can manage the low blood pressure issue, but at some point need to find out why you are having that. I keep a jar of salted pumpkin seeds on the counter and another in my bedroom so if I feel like I need salt I have a quick way to get some. There is a great book about adrenal fateague that has many good ideas for approaching low blood pressure. We're remodeling right now and I can't find anything, but I'll try to get the name of the book for you. I hate the way things are so "grey area" with Lyme and all of the associated ailments. It puts us all iin a situation of having to choose treatment options when we are not professionals, and of having to choose professionals to trust when most of us have a long history of mistrust based on inadequate and insulting medical appointments. And I hate that it's so hazy that insurance doesn't pay for a lot of the ptoential treatments, so it drains our financial resources. But that's where we are, so the choice really is to select a path that won't drive us nuts, or broke, and tha twill be beneficial. I'm glad you are making an appointment and hope that you will choose a path and follow it with faith that it will either work or you will know when it isn't so you can make a change. Take care.

Rose
Posted 12/24/2009 9:28 PM (GMT 0)
hI Rose, thanks a bunch for your reply- you are correct and that i should not worry about something i can do nothing about right now. That was my mantra yesterday and i'm hoping the spirit will last at least through Christmas so that i can have a little joy with my family. I just wish my symptoms were flaring so at this time but i know there are those feeling alot worse than me during the holiday- regardless of what day it is-. pumpkin seeds are great for you- i keep forgetting to get more. Very anti parasitic too! I am so sleepy right now- i think my nighttime sleep is a little effected. Anyway, thank you so much for your concern and advice. How are you doing these days? How are your twitches and bones? :)
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