posted
There are no support groups where I live and I just feel like I am going to implode. No one understands what I'm going though and it is beyond frustrating. I love my husband and family but they do not have one inkling of what I go through everyday.
To make matters worse my hearing with my lawyer before the Judge for my SS hearing is on June 13.
Needless to say one more speck of stress and I may just explode instead of implode, it makes a bigger mess for someone other than me to clean up. Please help. I'm really starting to lose it here!!!!
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Breaking up your post for easier reading for many here -
posted
There is a website called http://www.goodtherapy.org/ and you can search for psychologists who have experience or training in dealing with medical conditions.
I would say it doesn't matter if they "believe" you have lyme disease or not, they don't know. All they need to know is what you are going through.
I actually think it is ok to have a healthy doubt.
Personally I don't think we know who has lyme disease. I'm actually worried about people taking the antibiotics without real solid proof.
The reason is because I took 4 different antibiotics at the same time from my "lyme doctor" and all I got was a neurological condition which I still have today.
I get apresthesias all over my body that feels like cold water, burning and stinging. I stopped antibiotics after 6 months, but still get them 4 years later.
They seem to come back with upper respiratory infections and go away very slowly over about 18 months.
What I say is we need a test and a cure, not endless antibiotics that do nothing and don't cure or and we don't have proof of the infections to begin with.
I hope that antigen based tests will bring clarity to this issue. It all starts with a test, you can't do anything without a test. You can't develop a cure and you can't get support to develop a cure and you don't know what you are trying to cure.
Posts: 136 | From arlington, VA | Registered: Jun 2010
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
applewine, I know you are doubting your own health
but a lot of us are pretty darn sure we have Lyme disease and co- infections.
Please don't make blanket statements we are willy milly treating on a Lyme board.
I hope you find better health-
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
Perhaps you are not sure, Applewine - did you get any positive bands on your Western Blot?
A lot of us did, and we know we have Lyme. Also there's the Advanced Laboratory Services lab culture test for the actual bacteria.
A lot is known about the bacteria, its various forms, its MOs. Treatments are targeting all of that. Antibiotics and more have kept a lot of us going and turned some of us around.
What I have seen is we are all different, so it is certainly fair for you to report on your own treatment history. But we cannot speak for others, since everyone is different.
Posts: 13116 | From San Francisco | Registered: May 2006
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"I would say it doesn't matter if they "believe" you have lyme disease"
I completely disagree with this statement.
You need someone who UNDERSTANDS you in therapy or they really can't offer helpful support.
Of course it matters if the person believes what you're saying! You need someone who can support you, believe you, AND that you can trust.
You can't emotionally trust someone who doesn't believe you.
If they don't believe you, they may even try to convince you you're wrong and say it's mental which is way worse or lead you down the rabbit whole of other diagnosis.
It's awful having someone who's suppose to emotionally support you NOT believe you.
It's also bad to have someone believe you, but not understand your limitations.
You need to find a practitioner who has specific experience with disabilities.
If you're not obviously disabled (like walking with a cane). You might try to find someone who has experience with "hidden disabilities." This is a category where it's not obvious to the casual observer that you're disabled.
Posts: 2839 | From California | Registered: Jul 2012
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posted
Redhead, I don't know where you live, but I'm about to PM you with details of a wonderful LL psychiatrist on the East Coast
Posts: 431 | From New England | Registered: Dec 2011
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posted
Ah--how did I miss that? In that case, try going on the "Seeking a Doctor" thread and asking if there are any LL psychiatrists in your region.
Posts: 431 | From New England | Registered: Dec 2011
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Possible infection date 6/21/05 (no history of tick bite but went to hospital with "unexplained" high fever) Tested positive for Lyme and RMSF in Feb 2014 / suspected Babesia as well Posts: 65 | From Atlanta, GA | Registered: Feb 2014
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