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I think I'm too afraid to get tested for Lymes

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Posted 11/13/2014 10:16 AM (GMT -5)
Here's why:

1.) If I do get tested positive and I have to go on meds, I cannot afford to take off ANY time from work due to financial reasons. Plus, my job really makes me feel bad about even taking the slightest vacation.

2.) I'm already being treated for another disease. My current ID berated Lymes to me when I mentioned it to him and suspected I might have it, so if I do get tested without his knowledge then I am afraid of what his reaction would be. I'm also afraid of how the treatments (abx) will interact with each other (then again, maybe it's not Lymes and all these crazy symptoms are of what I currently have, despite doctors telling me no)

3.) The stories and the herxing I hear about, scare the living you know what out of me. If I herx, I do not *ever* want to experience the symptoms I did before. about 75% of my symptoms are gone ever since I've been treated for Hep, but there are still some debilitating ones which linger. That extra 25% that won't go away makes me believe I have lymes.

4.) Cost - My insurance doesn't seem to cover the good tests. I've had the ELISHA, which came back negative but I've already cancelled 3 different "Internists" who have specialized in Lymes because the cost was more than $500. I can't afford a lot, and if I'm on treatment for a long time (suspect I may have gotten this in July 2012) then I will definitely be in the hole. Thankfully, my Vitamin regiment has helped tremendously.

Can any of you convince me into at least getting the tests? If anything, at least start with the WB before I move on to Igenex?

Posted 11/13/2014 10:31 AM (GMT -5)
Yes, read my story. I would have given anything to not have had to live through what I went through all of those years and had the treatments that I needed back then. What I am facing now is no picnic either. But think about what you are saying - would you truly rather try to live with an ongoing infection? It's not self-limiting.

I don't speak of these things often on here - no reason to possibly scare anyone, but the reality of living with these infections isn't one that anyone in their right mind would do, if they had a choice. Ask anyone that has had issues from these infections all of their lives and they will tell you the same thing - get tested and get treatment. No matter what you face during that time, it's better than thinking you can live with it.

My treatments the first time around were not easy, I had a very hard time, but the relief of not having to live with the symptoms that had become part of my daily life was huge! I am now going through treatment for a reinfection - not fun, especially with the herxing, but I can't live another day with these infections being untreated.

If you have any unanswered questions, I'd be happy to get into more detail.
Posted 11/13/2014 11:01 AM (GMT -5)
Hi Luckyman,

Have you been exposed to ticks? Do you live in an endemic area?

It can definitely feel overwhelming sometimes. We'll help you break it down into manageable baby steps.

Keep posting, okay? We are here for you.
Posted 11/13/2014 11:09 AM (GMT -5)
It's your health. You should do anything you think is right for you. Don't let any doctor make you feel weird about exploring lingering symptoms. They would want to know if it was happening to them!
Posted 11/13/2014 11:15 AM (GMT -5)
Blue,

I live in the Northeast (NJ to be exact) so yes, I'd say I do. However, I suspect, that if I did get bit by one then it would have been in Michigan when I spent 2 days sitting on the grass on Belle Island. I started to get odd symptoms right after I left there and went home, starting with the neck pain. about a month later, when I was "trying to sleep", I did fall asleep for 2 hours and woke up with finding a "dead bug" on my couch near my head. I never took it anywhere. I flushed it due to being freaked out. But I never found it on me either. Hope that information helps. ELISHA test came back negative for LYMES according to my doctor back in January.
Posted 11/13/2014 11:57 AM (GMT -5)
Hi Luckyman,

Getting tested seems like a good idea. We can help you find Lyme literate doctors (LLMDs).

I was so scared to get tested. I knew something was seriously wrong with me, and every time I went to my regular doctor, they couldn't give me a real answer. I'm so glad I found the right doctors who listened to me.

Although Lyme has definitely been no walk in the park, knowing what I am dealing with is a million times better than not knowing.
Posted 11/13/2014 12:10 PM (GMT -5)
Hey Luckyman316

I've been sick for 2 1/2 years but have never called in sick so you don't necessarily have to miss any work. However I've only had mainly neurological issues with numbness etc. and not feeling well not cognitive issues. But as you know everyone reacts differently to treatment due to DNA differences and the various combinations of co-infections.
Posted 11/13/2014 12:35 PM (GMT -5)
Failing to plan, we plan to fail.

At all costs this is far cheaper if we start sooner addressing the possibilities. One has a better chance at a speedier recovery if one starts earlier than later. I speak from 14 yrs undiagnosed severe Lyme and Bartonella (by far my worse) and Babesia infections.

My body has been hit harder than I could ever imagine. Every organ. Every joint.

I am not finished though. I have hope. I have a new plan. I have wisdom, experience, and a large cache of what didn't work, and more importantly, what has/does. I am closer to my health today than I was yesterday.

I hope you talk to people who have this. Ask them their stories. Gain perspective. The more info you gather, the better equiped you will be to understand your individual needs and thus path. It's a puzzle. Remember, your puzzle is yours, and will never look like any other L/co puzzle. There may be similarties, but we are each as unique in the all as our individual dna. Honor your Whole, and the Parts.

My fear is in my not understanding, and so I dig, I research, I work on my puzzle. And with each piece of info I gain, it always.... ALWAYS leads me to more, deeper, wider and clearer info and understanding. This then affords me more of what I need to deal with the dr's, the professionals, those that could hold part of my personal puzzle.

You can do this. Step by step, and even shuffle by shuffle, and even when you are standing still. It is all moving forward.

Hang in there. We are here when needed. Lean on us.
Posted 11/13/2014 1:08 PM (GMT -5)
Hi You initially said 'Can any of you convince me into at least getting the tests? If anything, at least start with the WB before I move on to Igenex'?

It can just settle your mind better if you have already have the Igenex results before deciding on the next step of treatment.

You can order the Test Requisition yourself from www.Igenex.com but you need to provide information on a referring physician who will eventually need to provide a signature and access to a blood lab facility so you can provide your blood sample.

Lyme is a clinical diagnosis usually made with a Lyme Literate doctor but it will speed your diagnosis progress if you already have your IGenex testing done beforehand which at the very minimum should be Western blots for IGM (current infection) and IGG (past infection). Or at the very minimum does anyone recommend additional testing options? see www.Igenex.com

Unfortunately there are no tests to actually test for the presence of Lyme bacteria. All current tests including IGenex test for the presence of specific Lyme antibody protein bands by molecular weight. The vast majority of LLD's rely on IGenex Lyme testing.
According to Horowitz's new book "Why I can't get better.." You can possibly have false negative readings with the IGenex test but you really can't have false positives.
And yes you can be infected with Lyme but if you're not making antibodies you can test negative. Usually the longer you are infected the more likely you'll have specific Lyme antibodies.
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