posted
So I got an appointment with a local LLMD in Texas. I am happy because he is only like 15 minutes or so from my house! Anyways, I go on Jan. 7 and I am so nervous that the test will come back negative. I am pretty sure based on my symptoms and talking with others with lyme that he will think it is lyme but what happens if I do the special test and it comes back not showing anything. My husband and I feel this is our last chance at healing me. I just feel really anxious about it and can't stop it. Did anyone else feel like this? Also, if it turns out I don't get diagnosed then my family has pretty much said they think it is all in my head and that I am making this up for attention, why someone would do that is beyond me and is irks me they think that of me.
anyways sorry for the rambling
-------------------- Casey 1/7/10-Diagnosed with Lyme but got it in July 2008 and possibly 15 plus years ago http://www.crazylyme.com Posts: 105 | From Aubrey, Texas | Registered: Nov 2009
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posted
Most LLMDs recognize that there is usually a whole host of reasons for people to feel ill. Mold, metal toxicity, viruses, co-infections, etc.
Your doc will probably work with you to determine what your protocol should be to put you on the path to wellness.
I once asked my doc about co-infections after finishing a course of mepron (antimalarial). What he said is that he doesn't need to know every coinfection that I've got to know that if he proscribes broad-spectrum antibiotics and antimalarials it will wipe out a wide range of bugs.
Certain types of bartonella are only now being scientifically classified. Babesia wasn't identified until the 1990s. In 10 years from now we will know the name and exact symptomology of other bugs.
The importance of getting to a true LLMD is that they recognize this complicated array of issues.
You will be fine. It's not about how a blood test result comes out, it's about diagnosing the patient clinically.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
It's a clinical diagnosis. Your llmd knows this.
Your family has no idea what to think. They know you're sick and the doctor(s) you've seen can't tell you why.
Many of us have negative bloodwork that's "not quite right", but doesn't identify an exact problem.
It's a clinical diagnosis. It's complicated. As long as you're seeing an llmd who knows this disease (or these diseases), he can sort it out.
You're on your way.
Good luck.
Posts: 797 | From New York | Registered: Feb 2008
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massman
Unregistered
posted
Sorry to say join the family poor support "its all in your head" club.
Not sure why families are so stubborn + clueless about their lack of support.
There is support + people here will listen. Look for a local support group. Half the time regular tests will say you do not have it when you really do.
I now feel family critics should be given lyme + coinfactions cause that is the only way they will get a clue !
If you are interested in a Naturopathic Doc in your state I personally know a sharp one.
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posted
Try to be patient with your family. I have had doctors telling me for 15 years that it's all in my head and I HAD a rash and postive bloodwork.
Just today I considered that maybe I am nuts and it is all in my head, when you hear it enough you start to believe it. Then I thought..., but what about everyone else in my situation, and then went on to think that maybe everyone on this board is nuts too (sorry everyone, it's been a bad day full of anxiety attacks - I have since come to my sences).
I am thrilled that I have sought out a doctor and started treatment again after a relapse 2004/2005 and I would like to tell everyone I know about it but I don't because everyone already thinks I'm a hypocondriak and would probably think that I am paying a fortune for unnecessary treatment.
Most people just won't/can't understand without being in the situation. Also, one of the many reasons I turn to this website... (and wish I had found it sooner)
You will probably be very relieved after seeing an LLMD because they will not dismiss you like all other doctors have.
Posts: 22 | From South East | Registered: Jul 2008
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posted
Thank you everyone! You all made me feel sooo much better and I am not as anxious as I was. I think my family not being totally supportive and then loosing friends over my illness, they got annoyed that I am constantly sick and can't shop or go out like before, has been hard on me. It is hard when my family laughs at me for using a cane or wheelchair on my really bad days but I can't help it. Thankfully my husband has been extremely supportive and has changed his life to take care of me and our kids. It is amazing that one little bug bite can do this much damage on your life
-------------------- Casey 1/7/10-Diagnosed with Lyme but got it in July 2008 and possibly 15 plus years ago http://www.crazylyme.com Posts: 105 | From Aubrey, Texas | Registered: Nov 2009
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posted
Thanks Kit. May I ask how old your kids are? My kids are ages 5,4, almost 2, and 13 months old. I worry a lot about what my illness is doing to them. I used to be the one to take care of the house and them and now I am in bed most days. They are so used to hearing mommy say she can't come or can't do this because she is in too much pain.
-------------------- Casey 1/7/10-Diagnosed with Lyme but got it in July 2008 and possibly 15 plus years ago http://www.crazylyme.com Posts: 105 | From Aubrey, Texas | Registered: Nov 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Lyme is a "clinical" diagnosis. A good LLMD will know this. Don't put so much faith in the test because they are inaccurate and you might be setting yourself for disappointment if you are depending on the test results for validation.
Maybe you will get lucky with a positive test, but if not, do not be dismayed. Many times after a few months of treatment, the test will become positive.
The main thing is that you have a good LLMD, and if so they will diagnose you based on symptoms which is the correct way to recieve a diagnosis of LD.
Don't worry about what you family thinks. Your focus needs to be on doing what you know is best for your health.
Many times our family members aren't supportive because they just don't understand. And there is lots to not understand concerning LD. It is a very bizarre illness.
You will learn a lot as you go along and maybe your family will be open to learn too.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
One of the reasons I think it's hard for families to understand: they've seen a lot of us well, and can't relate to the change.
Also, doctors generally tell our family members that we don't have anything. If family members tend to believe what their doctors tell them, then we don't appear to have any standing.
I think the Under Our Skin film can be quite an asset in opening up people's eyes as to what's been going on.
Posts: 13171 | From San Francisco | Registered: May 2006
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quote:Originally posted by wb4471: and then went on to think that maybe everyone on this board is nuts too
Hate to tell you, wb, but I was nuts BEFORE I contracted Lyme, so the Lyme didn't do this to me, no way, no sirree or ma'ammaree - Robinutellia
Posts: 13171 | From San Francisco | Registered: May 2006
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