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Just got a call from my primary doctor who said all my tests she did for Lyme

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Posted 3/17/2010 6:18 PM (GMT 0)
 

Okay, just got into work, I'm having a real problem with sleep, I take an ativant but I usually don't fall asleep until late, last night I didn't actualy sleep till almost 4:30AM so I was in no shape to go to work at 8:00, and we all know this is becoming a major problem. My boss is good and very understanding, but you can only do this for so long

 

 

 

Anyway my primary called me this morning and said that all my bloodwork came back and she doesn't see any signs of Lyme???? shocked Okay, don't get me wrong, I don't want to have it, but all of the symptoms that were there before are back. I have fibro so I do deal with sore muscles and pain daily. But in addition to that I now have

 

  • Pain in my knees
  • Week thigh muscles that make it hard to get up and down
  • Tingle-Pins and Needles on my right hand side when I lay day which radiates from my rib area all the way down to my feet
  • Fatigue that is over and beyond what I face on a daily basis with fibro.

I am over weight and I know that I am and want to loose weight, but my primary was then saying if I lost the weight I would feel better, and I understand that and I do honestly believe I would feel better, but pain free...nope. So anyway (forgive me as I ramble) I don't know what to do at this point? I do know that a lot of times the "tests" that are done thru the primary are not always the know all and be all for Lyme. So I'm looking for advice on what to do from here????

Posted 3/17/2010 7:31 PM (GMT 0)
I think the answer you're looking for is in the book called "What Your Doctor May NOT Tell you about fibromyalgia"

It talks about how this disease hits you at your very core by disrupting with the process of ATP production. Due to genetic reasons, the phosphate in ATP does not get eliminated properly within the cell thus since it has two negative charges, calcium with 2 positive charges is used to neutralize it. However calcium is used in the cell to tell it to "work, work, work." Therefore your cells then are constantly working without breaks in between functions that normal cells have.

The best way to eliminate the excess phosphate and calcium inside your cells is by taking Guaifenesin.

However, if you are exposed to 'salicylates' it will counteract the effects of guaifenesin. There is a whole laundry list of products/foods that contain salicylates and for more information please read the book.

But this metabolic issue is what I believe is the very core of all your problems because it is happening at the cellular level.

Michael
Posted 3/17/2010 7:43 PM (GMT 0)
Strongly advise you to get a copy of your test results so you can see them yourself. Many MD's have no idea how to properly interpret them. Also, commercial tests through most labs omit testing for some Lyme-specific bands, which can render the test results very inaccurate.

Also, have you been tested for any coinfections? If not, then it could be one or more of these that are causing problems for you instead of Lyme.

Finally, have you looked in to hormone imbalance (thyroid, adrenals, etc.)? This is something that your PCP can help you with by ordering some basic tests, and they should be covered on insurance...

Good luck,
Posted 3/17/2010 7:45 PM (GMT 0)
Hi Hopegirl,
Have you considered that maybe the Lyme was in it's 'cyst' form at the time of testing? Or maybe, like it was for me, it has become chronic & hiding inside your own cells? Or it could be that you don't have Lyme, but another tick-borne illness? All of these things are a lot more common than most people think. Also, is this doc a Lyme 'specialist'? Or just a doc trying to help?

If your symptoms match 'just too well', or it's the only thing that describes all of your symptoms, you may want to consider being retested with a more sensitive test.

As far as trying to sleep, do you have a "sleep routine" that you do every night before laying down in bed? This really does help, although it isn't always enough when a person is dealing with tick-borne illnesses.

I also deal with Fibro (or so they say) and understand the symptoms. With tick-borne illness, you will still have all too many symptoms that are not explained by the dx of Fibro.
Posted 3/17/2010 8:00 PM (GMT 0)

Michael - That sounds like a good book that I need to pick up. Thanks for the info I need to get my hands on as much literature as possible right about now.

Razzle - Your right, I do need to get a copy of the lab work up, calling the doctors office now. I don't think I have ever been tested for co-infections, even when I had the pic line last year and getting IV antibiotics. Never thought about hormonal imbalance, is that something that a CBC would show or does it need to be specific?

Traveler - My regular doctor is on vacation this week, so it was a nurse practitioner doing the blood work. She is nice, but probablly has no clue. Yeah, the symptoms are just too strong to be ignored. These are the exact same symptoms I had when I came to get tested last year, only that time the Lyme tither came back positive. I had no idea that the Lyme can hide. I guess that is why I need to see a LLD.

I need someone to give me a name of a new LLD. Looking in SE PA. The one I saw before in West Chester PA, I've heard he has done wonders for some, I just didn't feel like he may have been the best for me. I was a little shocked that he never tested me for co-infections. And now my symptoms seem to be complete with the migraines. I haven't had to deal with them for a while, but as of today.....(In the Heather Roarke voice from Poltergiest)///"They're Back"...

Posted 3/17/2010 8:28 PM (GMT 0)
Please get a copy of your labs and post anything abnormal here. My doctor told me the same thing 5 years ago and I went 4 years undiagnosed. Read the labs yourself and do research. Lyme is clinical diagnosis even without banding.
Posted 3/17/2010 8:57 PM (GMT 0)
As springsjean said, Lyme is a clinical dx - even the CDC says so!!!!

Another thing is that you MUST be your own health advocate! Do as much reading as you can to understand just what is going on in your body. Even if you can only get 'an idea' of what is going on with your body & the TBI's you now live with. You know what is 'normal' for you & where in your body you are experiencing changes & issues.

I look forward to your posting the results of your blood tests.
Posted 3/17/2010 9:57 PM (GMT 0)
hopegirl, of course your primary doctor couldn't find any signs of lyme. Only a LLMD is qualified to diagnose lyme disease. Your primary doctor has no clue and if you want to get well you need to go to specialists who know how to treat this disease, whether it be an LLMD, LLND or someone like Dr. Jernigan at the Hansa Center.

My advice is find a good LLMD or LLND that you have confidence in and get treated by someone who knows this disease. Otherwise you're gonna be going to doctor after doctor and come up with 50 different answers.

Like I said on another thread, email me and I'll send you links to LLMD's and LLND's in your area.

By the way, another great book to have and read is, "Beating Lyme Disease" by Dr. David Jernigan (second edition) http://www.hansacenter.com/beating_lyme_disease.php . I highly recommend it. It's got some great information for detox baths and things that you can do at home that can really make a difference in how you feel.

Gary
Posted 3/17/2010 10:35 PM (GMT 0)
No, a CBC only looks at blood cells, not at hormones. It would be good to talk with your PCP about checking out thyroid (TSH, free T3, free T4, thyroid antibodies), cortisol (fasting, done as close to 8am as you can; or saliva test in which you put cotton balls in your mouth at specific times of the day), and maybe some of the female hormones as well (imbalanced ratios of hormones can also cause problems, even if everything is considered within the "normal range" on its own). Make sure you get copies of these tests as well, as there are some pretty savvy folks here who can help you figure out if there are any imbalances for which you need to persue treatment.

Good luck,
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