HealingWell
Search Close Search
☰

Waiting, waiting, to want to cry.

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/14/2012 1:36 AM (GMT 0)
I finally got the forms filled out and into the DR. in the week it took me to track down all the improtant information the closest apointemnt they have has gone from some time in dec. to  probebly more like feb.  Dec. is far enough away already. amd if my regular doc had been co-operatve this whole prosses would have started in may.  I am so overwhelmed with eveyrhting in general and dreading a few mroe months of not knowing what to do. there  is so much to read  about what I should do and I am trying to delve  into it but that is also overwhemling.  I dont really know what I am asking but i am feeling a little hopless right now and any advice would be appreciated.
Posted 9/14/2012 2:02 AM (GMT 0)
I am new also and so overwhelmed and distraught over my daughters dx. I dont know what to say I have been crying for days now totally frozen in fear to start all of these abx on my child. Just read your post and feel bad for you and wanted to say hi and you are not alone.
Posted 9/14/2012 6:55 AM (GMT 0)
thank you.
:-( I am sorrry for your daughter.
Posted 9/14/2012 11:11 AM (GMT 0)
The hardest part with lyme is finding and getting proper treatment and recognition. It can be very confusing and frustrating to have to fight and wait and do all the leg work on a REAL disease. But that's the reality. Nothing is easy with lyme. But getting well is possible. It takes a lot of research, determination and positive thinking I was so depressed I never thought I would ever feel "normal" again. I was shunned and started believing the many doctors who told me there was nothing wrong with me. Thank goodness I am one stubborn control freak because I refused to bow down.

Remember to come here often and ask many questions. You'd be surprised the amount of info you will get here. The more info you have the more confident you will be with your questions and determination to get well.
Posted 9/14/2012 1:30 PM (GMT 0)
I will post my LLMD's herbal protocol this weekend. I had started the Buhner protocol on my own, and it turns out that is exactly what he wants me to continue, with some modifications. Turns out that Buhner himself has modified the original one and now has a new book coming out.

Don't despair! You can do yourself a lot of good while you wait. It felt so good to have this doctor tell me that I had been doing a great job on my own. Basically, he's just adding to what I'm already doing.
Posted 9/14/2012 3:23 PM (GMT 0)
i know.. it is so upsetting to find a doc or go to one who can't help you. and al the waiting in between.

what is going on with the med community? nobody cares..it is all about the insurance, or payment or papers..
Posted 9/14/2012 3:46 PM (GMT 0)
So frustrating I know!

We need this disease to be recognized and we need health care available to all....how can we be the only civilized nation without healthcare. No one should die because they are poor. We with Lyme get the double whammy a disease no one wants to hear about or treat, then when you can find a LLMD to treat, it is super expensive. Sad state of affairs.
Posted 9/14/2012 11:09 PM (GMT 0)
Thanks everyone. Things seem a little bit better today.
I am really interested in the herbs. I have been looking into some but still it is so much and I have a lot of bad reactions to things so I feel the need to really look into everything positive and negative the best I can…
Anyway, last night I discovered that someone I have started to become friends with is also dealing with untreated Lyme. We had a great talk and I am hoping we can become good supports for each other and maybe I can learn some stuff that might help us both.
After telling me they probably wouldn’t be able to get me in until late January or February, the doctor contacted me and offered me an appointment for later this month! Its all still so scary and overwhelming but it seems like at least some of it is falling into place.
Posted 9/15/2012 12:01 AM (GMT 0)
Decfire,

The fact that you found someone who has LD too is going to be so helpful. I wish I had a buddy to talk to who gets this disease. Plus your appointment got moved up! that is great.

Lots of luck to you.
Posted 9/15/2012 3:20 AM (GMT 0)
Reading your thread and so glad to hear that your appointment got moved up!

You mention being very sensitive to things, one thing to keep in mind is starting medications or herbs slowly and to not start two new things at the same time so that you can pay attention to how your body is reacting. My doc used to have me start things 3 days apart and now we do 5 days apart because I often react to meds (nausea, herx reactions, etc.). Read up here or somewhere else about herx reactions so you can know what to expect. It all seems so confusing at first but you will get there. Best of luck to you!
Posted 9/15/2012 4:13 AM (GMT 0)
really sorry to hear u have lyme disease. I seen a dr phil show several months ago n one of his workers had lyme disease. The story she told n all she had to go through was just unbelievable to say the least. It would be good if you could order that specific eposide because i think it would be of great help to you. God bless n hope everything goes as well as possible.They also had another woman on the show that had the disease as well.what I saw just made me cry for the 2 ladys.
Posted 9/25/2012 10:48 PM (GMT 0)
Thanks everyone. I had my apointment today. It went really well and i am looking forward to starting everything but still so overwhelmed. I am lost even just trying to figure out how to get all the supliments!
Posted 9/26/2012 8:51 PM (GMT 0)
Congratulations!!! Remember not to start more than one drug or supplement a day - that way you will know which one caused what to happen should you run into any issues.

Detox, detox, detox!! There is a really good post about detoxing when you have these infections in the "New to Lyme?" thread at the top of the forum.

Drink plenty of water - at least 64 ounces a day.This will help flush toxins and keep you hydrated.

Keep on reading - especially on here smilewinkgrin LOL!!!! The more you understand about these infections, the better you are at helping your doctor to know what happening and what you can do to help yourself.

And, of course, keep asking questions!!! We are here to do our best to help you learn and understand all of this!
Posted 9/26/2012 11:03 PM (GMT 0)
hey decfire! wow! That is fantastic that you found a fellow lymie friend. Lol we use to say misery loves company...:)
But it is great to have someone who understands how you feel. I think its great. I too had some friends hold my hand through my ordeal. it is great to see someone getting better too.
That is great news about being bumped up. Just take it one day at a time. Like traveler says start the stuff slowly.
Good luck with the treatment. Don't be scared. I have two friends that were healed with herbs.
I too am going to be doing buy homework with herbs for my daughters little problems from lyme.
Posted 9/27/2012 12:09 AM (GMT 0)
I started the diet today and i will start the first medication tomorrow. still super overwhelmed and have so much to do and work out. It is really great to have some people that understand. I have another friend who is also going through this, trying to get a Diagnosis and everything and she has helped me out a lot, I only hope I can help her as well.
I am also feeling a little better about some of my other firends. I was having some paranoia and feeling like people thought being sick was all in my head, or other things. its better now that I have seen the doctor and I think some of my friends are starting to understand things a little more.

I will probebly be posting soon with diet question. this is all so much, its hard to know what is ok to eat and what is not.
✚ New Topic ✚ Reply