Confused and feeling aweful

Ok...does anyone here really believe I could have Lyme? I get so discouraged listening to people tell me I don't have Lyme cause my tests were "negative" (IgeneX IGM 41++, 66+; IGG 41++, 31 & 39 IND. I have been suffering with horrible allergies, air hunger, chronic sinusitis and major GI issues - with lots of weight loss.

Plus I had the lung lesions that showed up, then disappeared; myocarditis that showed up, but is now gone; but I still don't feel any better. I accessed the Lyme Disease Support Network on Facebook just to see what others were dealing with there - and what a joke...it's moderators told me that the Lyme tests don't lie, and if my tests were "negative", then I definately don't have Lyme :( and that Igenex is the worst lab to use - that they only want our money. They also said all LLMDs are quacks looking to make a quick buck.

This illness is so frustrating. Just not having adequate support, I think, is what hurts a lot of us. Makes us feel alone and hinders our recovery.

That's horrible that they treated you such. I've felt nothing but support here, especially the moderators who take a lot of pride in what they do. I think as long as you stay on top of your symptoms and continue to rule out other things you should go with your gut. I'm in that process now with a cardiologist and a GI doctor. I'm horrible at reading the tests admittedly.

That only shows how little they know. There are a number of Lyme pages on Facebook that are out to spread more misinformation - believe me! It's driving me half crazy!! I decided to start listing the ones that I find spreading misinformation on my page declaring such - to start to get the word out. Why? Because we have the CDC running scared! They recently created a new group (Lyme Corps) to go out and "educate" doctors and clinics on the proper (IDSA) treatment guidelines. It wouldn't surprise me one bit if those that are involved with Lyme corps aren't the ones behind this.

The bottom line? You have two highly specific Lyme bands that are positive and can be backed with scientific studies that show they are Lyme specific - bands 32 and 39. It's much better to put our faith in those articles than people spreading misinformation intentionally.

Choose your support wisely. Be extremely cautious until you can see that THEY are the ones that are properly educated and not hiding their heads in the sand while the hurricane is coming on full force!

Personally, I believe it has to do with nothing more than political issues. Can you imagine if all the people who have had these infections for 20, 30 or 40 years (like me) that were denied Disability could suddenly start collecting it?

And, they've lied to us about testing, treatment, the prevalence of it and more - they simply don't want to be caught with "their pants down". This is part of the reason I'm not on here as much, I intend to do all I can to bring this to an end. I've seen too many people go through what you have and have watched those numbers grow in amazing numbers over the last 9 years. It's time for it to stop.

Ah ha - 2014 and there are 14.
California,
Connecticut,
Delaware,
Maine,
Maryland,
Massachusetts,
New Hampshire,
New Jersey,
New York,
Ohio,
Pennsylvania,
Rhode Island,
Vermont
and Virginia.

Actually, every state in now in the 'heart of it'. More and more studies are coming out that are showing that there may be different strains of Lyme, or more of another one of the tick-borne infections, but we all really are in this together.

Who to contact? Contact every elected official to get them behind you in the need for this!
/www.wmc.org/issues/take-action/find-your-elected-officials/

What to talk about? Here is the 2015 Wisconsin bill to help you understand what your state has already tried:
docs.legis.wisconsin.gov/2015/related/proposals/ab768

And here is one from Massachusetts to help you as well - It was easier for me to read with the way my eyes are today: /malegislature.gov/Bills/189/House/H901

if lyme were like ebola where it could kill you quickly then there would already be a cure for it. alas because you look 'fine' on the outside and it doesn't kill most in a direct way but lingers and causes all sorts of issues hence being called 'The Great Imitator' we are stuck with the political and divisive climate. unfortunately i feel the only way we'll make progress is if it along with co-infections evolve and start killing people and/or more high profile folks contract it. of course advocacy by all does help as well just seems more slowly.

You said tried? I am assuming that it didn't pass? And is this enough to get insurance companies to listen it doesn't seem to do more than make it OK to treat which is a step in the right direction I guess. It should be worded such that doctors and patients should be able to decide on treatments that are within reason.

You know, I used to do animal rescue (probably where I initially contracted Lyme) and in several years, almost every single dog we took in had Tick Fever (Erlichiosis). If the AMA and CDC would contact veterinarians for some stats, they would see what a huge issue Lyme actually is. It's in every state, folks, including Arizona. Yes, Arizona! Ask the vets! They will tell you the truth and it will make your head spin.

GRRRRR! Chomp! That's what I say!

Jenny