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Lyme Disease
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Posted 10/9/2012 2:23 AM (GMT 0)
After 10 years of being sick and 3 of being extremely ill I have gone through every emotion angry,sad,lonely,positive, negative, grateful because it could be worse, ungrateful because it's pretty bad and although I still am positive that I will get better I am sort of at a loss of what to do next? Anyone ever feel like that? Like you don't really know what to feel? I know I can do it but I just haven't figured out how. I am about to be left all alone to do all of my PICC treatments at home alone with my 3 year old for the first time and i'm a little scared. I take about 10 naturals a day and about 5 pharma and the IV and my daughter is also on a natural protocol plus I am a full time online student and have 2 dogs to take care of.Plus 2-3 dr apts a week! Anyone have any advise on how to handle it all? I'm pretty good at taking it all on but and still staying positive but, i'm tipping the scales this time...... confused

Maybe it is the weather? It seems a lot of us on here are having a harder time... I wish you all health and happiness light and love smurf
Posted 10/9/2012 2:28 AM (GMT 0)
Yes I certainly think the weather plays into it as I've been hearing more and more flares lately.

It is so easy to become overwhelmed. I've had a rough week myself and I don't have little one to care for. Please be sure to give yourself and credit you deserve and get as much down time and I mean really downtime like lying down with eyes closed as you can. Even if you are not sleeping or it is only 10 minutes, it really helps the body to unwind.

Besides that, music is a wonderful healer.
Posted 10/9/2012 2:57 AM (GMT 0)
I'm very new to all of this, but I wish I could be more help.

I just wanted to say, I read the first half of your post and I can completely relate. I feel like I've lost a good chuck of my life to this "mystery" illness. I've been very sick for quite some time.

I just got diagnosed last week, and now my doctor won't even return my calls to advise me as to what I need to do.

I'm so nervous about starting treatment. I don't know what stage I'm in, I don't know what the treatment will be, I don't know if I'll ever feel normal again. I have a 17 month old and sometimes I feel like my illness is robbing him of a normal, happy baby.

Don't get me wrong, I devote every ounce of my energy to taking care of him, but I dream of taking him to the zoo, or the pumpkin patch. I worry that I'll be sick on Halloween.

I'm terrified of the detox baths. I have anxiety about them and I haven't even tried them yet!

I'm sorry for rambling under your post. I just hope you know you're not alone. Not that it makes it any easier, but I personally would be lost without this forum.

Please keep me posted on how your treatment is going.
If you don't mind me asking, what does 5 pharma mean? Are those your prescribed medications? Are naturals vitamins and if so which ones work for you? Sorry if that's a silly question. I'm just so anxious in general, and my symptoms are so consuming. I don't even know what I would ask my doctor for if he would bother to return my calls. I feel lost. My chest pains are making the anxiety so much worse.

I agree with you about the weather. I'm feeling it, that's for sure.

I agree with springsjean, give yourself credit and allow yourself to rest and heal as much as possible. Do you have any family nearby that could help with the kids? Or maybe a church that offers a "parent's day out" or something similar so you can get a break?

What ages are your children? What state do you live in? I'm hopeful that you can find some resources to help you through this. I know how hard it is to get any time to yourself with kids, but you're going to need it!

Just remember, you've made it this far with NO treatment, but now there is a light at the end of this tunnel. Stay strong and truck on! :)
Posted 10/9/2012 6:44 AM (GMT 0)
Thanks Springsjean now only if I could find 10 minutes in my life... I soon will when things calm down a little. turn Your right music really helps! I think i'll put some on right now.

Rori its tough and I think everyone has to break down every once and a while. I remember first getting diagnosed and being so thankful then when Dr's started talking treatment and I started reading I was sure at the stage I was at that Lyme was a death sentence. But, guess what? I'm still here ha ha :)

The thing about Dr's who are willing to treat Lyme disease is they are VERY overwhelmed with patients because there are so few Dr's for so many patients. Is it a LLMD you are seeing? If it isn't they probably are not the one that you want to treat you. Trust me and the experiences of others you don't want to deal with egos of infectious disease Dr's.

Before you start treatment I really hope you will try to detox and to ease you mind the detoxing baths really aren't scary. They are quite relaxing actually as long as you don't get the water too hot. Aim for warm and work your way up from there. Also if you aren't on antibiotics try an oral detox. Everyone is different but detoxing has saved me!

I know it is hard with kids I have one daughter she is 3 years old and has congenital Lyme from me :( She may not have the traditional childhood but I sure love her more than anything else in the world. I hope that makes up for the things that she misses out on. Also I try and push myself as much as I possibly can when I can for her. We went to a pumpkin patch but only for 20 min... its all I could do. I don't think that any kid has the perfect life but if their parents love them their life can be great no matter what. :) It sounds like your a loving parent and you have to push to get better for that little guy!

Ya Pharma are my prescribed meds rocefin, metoprolol, alinia, zofran. rifampin, actigall geez I guess I have 6! And the naturals are Crypto plus (tincture), IGG (immune booster), GSE(natural antibiotic/antiviral), Maca Root (Immune support), 1000 MG vit c, L-Drain(tincture), Gannoderma mushroom extract, milk thistle, vit D, and probiotics. If I take them on the right schedule I really do feel better.

There is always a light at the end of the tunnel I live in California and my Doc is in the bay area. I know that it can be soo consuming and it still gets me and I get confused and at a loss for words with so many words flying through my head but, I know and want you to know with the help of great people such as this support group we can all get through this together!

Email me any time with any questions or if you just want to talk. I have taken several natural protocols and have now been on antibiotics for almost a year. Just started with a PICC line though so I am hoping this is it!!!!! It really makes me feel better to at least try and help other people if I can. Thanks for responding both of you!


:-)
Posted 10/9/2012 12:55 PM (GMT 0)
Kids are resiliant. :) What they remember most about their chilodhood is being loved and feeling safe. You can provide that from the couch. When you feel ok, do things and when you don't...rest.

I speak from experience...

I have 3 kids, now 11, 9, and 7. We homeschool, and my oldest has Lyme and is on the Spectrum. We missed almost an entire year of our homeschool coop group due to my illness. I have *schooled* the from the couch, bc I coud not hold my head up.

I am very lucky that my husband will pick up a lot of slack in the *doing things with the kids* area, so they feel like they still do things. WHen I am well, I do stuff with them, when I am not...I tell them I love them and hold them and talk with them and that has to be enough.

They are very independent kids...during my last backslide, my oldest did a lot of the cooking for the week...he loves to cook! He made dinner every night of the week! I was so proud and told him so...he felt great.

Having a sick parent teaches kids compassion and understanding...they are great-ful in a way that kids with healthy parents aren't. It is a hard road, but I think it makes them stronger. I wouldn't wish Lyme on anyone, nor would I want any child to have to deal with an ill parent but to spin positive here...

I do feel guilty about being sick and not being the mother I want to be all the time...but I do the best I can and when I stand back and look at the people my children are becoming...its ok. :) All you can do is the best you can do. LOVE is the most important thing in a child's life. They will long forget the *things* and though going and doing is great, and creates memories, no child will grow up saying they wish their parent(s) did more with them and loved them less... :)
Posted 10/9/2012 4:06 PM (GMT 0)
I would like to say 'ditto' to Raw Runners' post!!! I too home schooled my two children - who are adults now. Kids are a lot stronger than we frequently give them credit for! They can most certainly understand at very early ages that Mom's too sick to do much! Mine sure did!

My two kids always helped to take care of me when I had my flares - no matter how long they lasted! When we talk now, they don't think they had a 'bad' childhood, as a matter of fact, they thank me for giving them the opportunity to grow up the way they did - it taught them compassion and responsibility since we had a full working farm when they were young preteens/ teens and they had to pick up a lot of slack from time to time.

So be sure that you tell your kids how much you love them. Color with them, or watch a few good movies. When you are up to it, cook or bake with them, allow them to have chores to help out around the house once they are old enough to do some simple things. These are the things that kids will remember -and one thing my kids say to me: even though Mom was ill, she took the time and energy to do things with us!! It brings a smile to those lovely faces every time!!
Posted 10/9/2012 4:09 PM (GMT 0)
PositiveLymie,
Do you have a calendar that you use to write your schedule on? I still have to use an actual paper calendar that I write on to keep things straight for me - and everything goes on that calendar!!! Well, if I want to remember it, it goes on the calendar anyway!!! Giggle!! turn

You can also use timers during the day to let you know when it's 2:00 and time to do something.Watches and phones have such neat functions now!
Posted 10/10/2012 6:21 PM (GMT 0)
Thanks guys i agree kids mainly need love :). I do have a planner that i use and my cell phone calendar. They remind me but if im doing something dr apt or whatever i miss that time slot then i end up staying up super late to take everything! I am curious though do you think you can take agtigall and alinia at the same time?
Posted 10/10/2012 9:37 PM (GMT 0)
According to Drugs.com, there is no interactions between the two.
www.drugs.com/interactions-check.php?drug_list=2281-1512,1721-1081

I know what you mean about the doc's appt or whatever making you late in taking your pills. I deal with the same thing! I try to take mine a bit early when I know that I could be in a situation where I would end up being late in all of my pills. Helps keep me from having to stay up late!! :-)
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