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Posted 2/22/2013 12:31 AM (GMT 0)
I'm trying to stay positive, but I just got an email from my LLMD informing me that he cannot help me with disability, that I should contact my PCP for help with this, and basically that I need use Fibromyalgia as my reason for applying.

The problem with this is that the PCP I was seeing doesn't think I have fibro, and says its obviously not Lyme, my western blot was negative. He said I'm probably "just stressed". Well, yeah I am, but I'm also very sick!!! Which is why I'm stressed...

My rheumatologist dx'd me with fibro, but since I told him I got a 2nd opinion and started treatment for Lyme, he stopped returning my calls, emails, etc. To say he disagrees with my decision to pursue treatment for Lyme is an understatement. He was so unprofessional, I have no desire to ever see him again

I was already driving an hour each way to this Rheumatologist, the ones around here don't take my insurance, he was the only one.

While I certainly understand my LLMDs inability to help me with this, I just don't know where to turn.

Couldn't I get in trouble for applying for disability and leaving out medications (long-term abx), and names of doctors I'm seeing (my LLMD)? I wish I could drop the application altogether, but my family needs this, at least temporarily.

I'm not expecting any answers here, I know I'm up a creek without a paddle...I guess I just needed to vent. If I didn't agree with my "depression" diagnosis before, I certainly do now. Sheesh...I need a drink. But don't worry, that's not gonna happen either ;-)
Posted 2/22/2013 1:26 AM (GMT 0)
Sorry you're struggling with this so much!

What about seeing a new integrative PCP? Maybe you could simply say that your previous PCP isn't sure what's going on, but that you fit the "symptoms" of fibro?

Wheew, that's a tough one. It sounds like you're probably going to need to find a new PCP to help with that process. I wonder if your LLMD could recommend a PCP?
Posted 2/23/2013 2:51 AM (GMT 0)
Thanks mystery...I got some "good" news today, my rheumatologist is referring me to a pain specialist. So hopefully that will not only help my disability case, but I can also get the help I need to manage the pain.

Now the question is...do I risk telling the pain management dr I'm being treated for Lyme or let him manage pain from "Fibromyalgia" and other dx'd conditions...

I'll have to feel him out first I suppose.
Posted 2/23/2013 3:42 AM (GMT 0)
Lymer,

Your situation is really becoming a bit cloak and dagger. If all else fails, you could probably sell the movie rights to your story! I am looking forward to hearing how the story unfolds.

Seriously, though. I hope that you can get the disability and financial relief that you need.

Don
Posted 2/23/2013 12:41 PM (GMT 0)
This is the best advice I can give you....No matter what your illness (Lyme, Fibro). get yourself a good Naturopath.
Fibro is an illness of the unknown and more often than not, it caused by food intolerance and emotional turmoil.
I treat MANY fibro clients and can tell you, most of them are well now.
Not going to sugar coat it; it takes A LOT of work on the patients part to get well.

Again, get a Naturopath, they can heal you as a whole. There are no drugs that cure either fibro or lyme. You need to find the cause for both and heal

Good luck
Posted 2/23/2013 1:10 PM (GMT 0)
Peacesoul,

My dr is a conventional trained dr specialised in CFS/ME (I'm in BE, there are no LLMD's here), but all of his patients have to pass a test at US Biotech to determine food allergies, and then pass by a dietist he works with to determine intolerances. It was only after 2,5 years that he discovered the Bart/Lyme, after curing my leaky gut and testing for viruses (like HHV6, HHV7, EBV, mycoplasma, XMRV), trying to boost my immunity (didn't work because of the Bart/Lyme).

My sister had Fibro, she was highly allergic to casein and some other foods - all of her pain is gone since she started the severe elimination diet.

I myself am on a diet to keep my histamine levels as low as possible, low fructose intake and no lactose. It helped a lot.

I would, personally, advice everyone to get tested for food allergies.

But, the diets are not easy to start with. Once started though, I noticed such a big change that I didn't want to go back to what I was eating before.

sorry for entervening into your thread Lymer :-)

Posted 2/23/2013 1:26 PM (GMT 0)
Great share.....thanks MarieLS

Once I got off gluten, MANY of my symptoms went away in less than 2 weeks. It's not easy changing a diet, but it was easier than being sick all the time :-)
Posted 2/23/2013 2:21 PM (GMT 0)
Lymer-

From personal experience, you have to be very truthful on your disability claim. They ran a health insurance background and a claim through my pharmacy to see what all meds I was on and who prescribed them. This was Pre-LLMD. Even though I have diagnosed Fibromyalsia, they didn't consider it a condition worthy of disability. They are not happy when a pain specialist is involved.

It depends on your state, if you are going though SSI, or state pensions. I could share a lot of info with you, since I just went through this. You can email me.

:-)
Posted 2/23/2013 9:04 PM (GMT 0)
Momof2 I would love to talk more! Give me a heads up when you get this and I'll erase from the forum (for privacy purposes):

[email protected]
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