Please pardon any in-formalities, this is my first post as well as I am very new to the community.
So a little back ground: (I will keep this brief) about 20 years ago I was treated for lyme, about a year or so after I was first treated I was diagnosed again.
As I grew up I've dealt with a slew of medical issues. I had heard about the long term side effects of chronic lyme but was very unsure for the things I was dealing with and where to go.
July of this year I got the number of a LLMD, 2 weeks later I got a diagnosis. I am currently being treated for Chronic Lyme as well as Bartonella.
Today is only day 70 in my treatment. I am being treated homeopathic/herbal as well as with antibiotics.
I feel that this is going to be a long, stressful ride as it has so far proven to be extremely difficult (and I'm barely three months in!)
So that brings me here. I do not know any one dealing with or that has dealt with any of the symptoms or treatments I'm going through.
I'm looking to reach out to people dealing with similar things as I, learn as much as I can on the subjects as well as hopefully be of some comfort and support as I also hope to receive.
I hope everyone is having a wonderful day!!!
Cheers
(breaking up the post for easier reading for many here)
[ 10-03-2016, 04:55 PM: Message edited by: Robin123 ]
Posted by Keebler (Member # 12673) on :
- Dear Mubs,
Thanks for wishing a "wonderful" day. As you know by now, many words have gained a fluidity with definition. An appreciation of irony is handy to have in that grab bag when cheer just won't quite show, too.
Welcome to some sunlight, some fresh air and a cup of steaming soup!
Metaphorically speaking, of course. Sorry for why you are here yet - sadly - your experience is not at all unusual. There are thousands of others with similar experiences in the U.S. - and more across the globe.
You likely know many who may not actually know they have chronic lyme / TBD as other terms / misdiagnoses are too often settled upon -
- such as: chronic fatigue syndrome; fibromyalgia; often MS or other neurological conditions have lyme / TBD as the underlying cause and when infection(s) addressed, the misdiagnoses fade away (often).
While it shows you've already done a lot of homework to have figured this out and found a LLMD, if there are gaps in the puzzle some links below may help (oh, there will be gaps and they will be huge and many so don't think it will all fit anytime soon).
You have found a place to learn more for both those "ah-hah!" connections / education as well as comfort. I leave the comfort part to others as sharing links is more my forte and limit to what I'm able to do.
My best shot at comfort is to urge the appreciation of beauty in varied genres as often as possible. -
Posted by Keebler (Member # 12673) on :
- Basic support detail to help better tolerate treatment protocol:
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posted by Keebler (Member # 12673) on :
- Many links and news articles here will show just how many others have been left in the dust with "regular" doctors regarding lyme / TBD (tick-borne infections) and what else / how else things might be approached.
ILADS - International Lyme & Tick Borne Diseases Society
To me, the measure of a proper LLMD / LL ND begins with the manner of pursuit of knowledge evident with ILADS on-going education / conferences, etc.
About: Through Education, Awareness, and Action, ILADS promotes understanding of Lyme and its associated diseases and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.
The Lyme Disease Association (LDA), an organization which expanded its focus nationally 17 years ago, is dedicated to Lyme disease education, prevention, research funding, and patient support. -
Posted by Mubs (Member # 48872) on :
Hello Keebler!
Thank you so much for replying as well as supplying me with these links, I look very forward to looking into all of them.
There are most certainly many things that I don't understand, and I know that just like anything else, I will learn with experience.
The simple fact that you took the time to reply and make suggestions means the world to me and I thank you again.
Posted by ilovedogs (Member # 48866) on :
Hi Mubs you will get through this! There will be tough days but you will come out on the other side.
I was in remission for 2.5 years! Just came back as I'm in a relapse.
The people here are wonderful and pulled me through many a tough day.
Posted by Mubs (Member # 48872) on :
quote:Originally posted by ilovedogs: Hi Mubs you will get through this! There will be tough days but you will come out on the other side.
I was in remission for 2.5 years! Just came back as I'm in a relapse.
The people here are wonderful and pulled me through many a tough day.
Hello ilovedogs!
Thank you so much for your encouraging words!
I am so so sorry to hear that you have relapsed and I wish you a speedy return to remission!
From the posts I have read and the few replies I have received so far I can already tell I'm in a good place with good people =).
Posted by me (Member # 45475) on :
Welcome to Lymenet, Mubs. You have found a great support group full of many wonderful people. We will help you the best we can.
You are right in that this will be a bumpy road. The good news is that people from Lymenet helped me navigate through the bumpiest of times (that's a nice way to put it). I don't know what I would have done without the support of people on here.
We are here for you. Posted by Robin123 (Member # 9197) on :
Thanks for reaching out to us. You sound like a very considerate person!
If you'd like, you can list symptoms here that you're dealing with and we can give feedback on what can help alleviate them.
We're all different, and the trick will be to find out what works for you.
Posted by bluelyme (Member # 47170) on :
Welcome lymenet saved whats left of my life ...very valuable info and persons here .
Posted by Mubs (Member # 48872) on :
Thank you every one for your kind, warming, and welcoming wishes. I look very forward to the knowledge and experience I hope to gain from each and every one of you and I am overwhelmed that you have taken the time to reach out to me. I am thrilled that I have found such an incredible group.
Posted by me (Member # 45475) on :
Mubs,
Some of the best advice given to me is to educate yourself. Start with Dr. H's "Why Can't I get better" and Pamela weintraub's "Cure Unknown." For a quick and dirty, yet very well-done, overview of Lyme and coinfections, watch "Under Our Skin." The movie may be less overwhelming than reading at first.
Also, be very aware there is lots of false info out there about Lyme, so be sure and check that the info you are getting is accurate. Keebler gave some very good links that have good info.
![[group hug]](graemlins/grouphug.gif)