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Cant sleep...again. Dr apmt later this AM

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Lyme Disease
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Posted 12/6/2013 9:28 AM (GMT 0)
Its 315AM and now I am getting concerned if I goto sleep I might miss my PCP appointment. Although I really do not why I'm going except I'm on dsability so I feel I have to go. I guess I dont have high expectations. Just another visit I have to pay for that will not amount to any forward progress.

I finish the 1000mg / day Biaxin this past Sunday. I thought if I had/have Lyme I would feel better for a little while. Cant really say I feel better, in some ways I feel worse. Some pain in joints has returned (but not constant nor to the level of tears, maybe my pain tolerance is higher), more aching all over like fluish, some occasional sharp pains, fatigue. Mental fog and memory probs still. My neck is creaking when move it. Had to get up for Aleve for sinus headache, dont want a migraine.

I'm so tired of all this. I use to be a person that strived to always look to make progress in all I did including dealing with this 'mystery' illness. I think I have lost touch with the person I was, now just feel like a sick zombie. Yesterday I wrote a check and apparently before handing it over I put the account number in the member section. 24 hours later and still not registered. So I call, it was put in the wrong account, I had wrote the wrong account on my check. So 24hrs later I spoke my account number and the person said bt that is not what you wrote on the check.

I usually do a status write up for my doctor visits. With this headache and fatigue I just dont feel like doing it. Prbably would be a good idea but not sure I could write well, cant think well, they usually go hand in hand.

Future is so uncertain. Family pushing me to got Mayo but in my spirit I just feel they will not be able to help and even though family offered to pay the bills I dont want to waste their money anyore than waste mine. I am just so tired. I wish, pray God would bring someone to walk along side me and give me encouragement on a daily basis to try and exercise, get more chores done, to over come like I use to do on my own.

Sorry for whinning
Posted 12/6/2013 5:33 PM (GMT 0)
Roxie,
We are here to help you as much as we can through this - we all need to whine a bit when things get so tough. I still think I was the whiniest on this forum when I was in treatment! LOL!

It's scary when we don't have a planned out path to follow, to always be changing things in our treatments, to always have our symptoms changing around! And when you have family who just doesn't understand the truth of how we are treated and are pushing us to use doc's that we know won't help- it all adds up.

I would feel sooo overwhelmed by the enormity of dealing with these diseases while I was in treatment that it was hard for me to want to go on a few times, but the alternative - to stay ill - just isn't an option - not when at the other end of this is at least a better life!

You are doing well, actually. As I've said, this is a lot to handle since we don't just have to find treatment for a misunderstood disease, but can't get the understanding from those around us. It felt like I had to "fight" with everyone some days, and that can wear a person down - even if they are healthy!!

Hang in there!! Keep on detoxing as much as you possibly can to help you feel a bit better. Make healing your "job".

Remember to only exercise as tolerated - if if puts you back, or if it brings on a flare in symptoms, you've done too much. Your body is very ill right now and needs rest too. Same thing goes for those chores - ask for help when you need it.

If there is someone you can reach out to in your community, I would suggest it. Do you have a local support group you might be able to get to once in a while? Maybe you can connect with someone there and they could be a "Lymie buddy" with you. I know that made a world of difference for me when I was at my worst. I now consider this lady such a good friend that I claim her as a sister now.

Remember, this is a safe place to whine!! We all get it.

((((((((hugs))))))))
Posted 12/6/2013 5:40 PM (GMT 0)
Hi Roxie,

You're definitely not whining. This is a lot for anyone to take. I'm glad you are reaching out for help here. I live by the AA motto "One day at a time." Try to think of what any little thing you can shoot for that will help you healing. Some detoxifying lemon juice one day, maybe eat some extra vegetables the next. Day by day, our healthy habits will add up. Keep posting, okay? We are here for you.
Posted 12/7/2013 4:20 AM (GMT 0)
Thanks for the encouragement. Sometimes I think we dont realize how down we get fighting everything related to chronic illness. Feeling a bit better for about an hour tonight after got about 4 hours sleep/rest.

My doctor did convirm she would not treat me for lyme, worred about license. But she did agree now to contact the Lyme doctor and review my IGnex test, my CD57 and my history with the LLMD and see if we can get the lyme doctor to weigh in on the yes/no lyme status. I told her I understood she would not treat if lyme is suspected.

She also asked me if I am exposed to mold at home, I said I didnt know but how can one be alive and not be exposed to some kind of mold. She gave me an article for First for Women magazine, pg 41 talks about mold. Isn't there a way to test for mold exposure (mycotoxins), is there a blood test, I forgot to ask her this when at her office. It also says mold causes 96% of sinus infections, I wonder how they came to this number???
Posted 12/7/2013 4:53 PM (GMT 0)
They usually use either doctors notes on their in-office cases and/or hospital records for those kinds of numbers. So those like me, who treat themselves at home or use an alternative medicine doc won't usually be counted in. With that said though, they are likely quite accurate that the majority of cases are due to mold exposure.

Well, at least your doc admitted that you may have Lyme and that she is afraid of the repercussions of treating you, rather than just telling you that you don't have Lyme!

This seems to be everyone's "go-to" guy for mold, Ritchie Shoemaker: www.survivingmold.com/
I would suggest that you spend a bit of time reading about it and see if you fit that 'picture'. Remember that a lot of the symptoms for Lyme and mold are the same, so testing may be in order. The above site covers what lab testing can be done as well.
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