Newly diagnosed

Hello everyone. I just needed a place to vent and to talk about my experience with what I'm now being told is Lyme by a LLMD. He ran the igenx test and I tested IGG positive with their standards but not the CDC. The functional medicine/ LLMD who ran the test had already guessed I had lyme. My doctor who is working for Kaiser (a large corporate medical establishment) basically told me "Kaiser doesn't believe in chronic lyme". But she did not tell me what she herself thinks which is rare for her. So i'm thinking she might suspect I have lyme too. Unfortunately, because their infectious disease folks said I don't have it in their opinion, medicaid isn't covering any treatment. So I'm having to get antibiotics and antifungals from a place out of the country. I want to list some of my symptoms here and tell me what you think. I feel like maybe I'm going nuts.

I've had IBS and GERD for many years as well as hormonal problems. Those i don't think were caused by lyme. 7 years ago I developed TMJ after dental surgery and some slight altered sensation on the left side of my face. about 3 years ago now, I was power lifting, had all of my conditions under control etc. I suddenly had a huge surge in joint pain and simply could not lift as much as before. Like my ability to lift went down by 25% overnight and continued. I began having horrible fatigue no matter what I ate whereas before if I went off my food plan I'd be fatigued but not like this. Then 6 months ago, the left side of my mouth and face started to burn. Now my teeth also throb and burn on and off. It moved to the right side as well, but to a lesser degree. I got horrible headaches like never before and floaters before my eyes. I now get occasionally stabbing pain or electric pain on my body. Their was a possible "demylinizing area" on my MRI. The neurologist said I didn't have MS though. They said it was also "not quite trigeminal or peripheral neuralgia". Then I started with irritable bladder too.

Phew! well thanks for listening. This has been so hard on me as I keep getting worse. And now I'm eating to cope as well as having increased cravings with the nerve pain medication I'm on...it doesn't help...sigh

Welcome Joeyjoe!

Sorry for the reason you're here but glad you found us.

And, I'm really sorry that your insurance company doesn't recognize chronic Lyme - I certainly recognize it with your symptoms description and, of course, you being IgG positive.

The "New to Lyme" thread contains info about financial assistance resources - maybe some might be available to you.

There's also some great info about detoxing which is a vital part of healing. Detoxing is something you can start now...and work towards building a daily detoxing protocol. You see, it's the toxins the bugs create that drive our symptoms and treatment generates more toxins.

The sooner you're able to help your body clear those toxins and stay ahead of the toxins created during treatment, the better you'll feel.

Here's more info:

www.tiredoflyme.com/detox-methods.html

Has the LLMD mentioned any coinfections to you? Lyme rarely travels alone and you have some symptoms that might indicate one or more of the most common coinfections.

Also, in regards to irritable bladder - I dealt with urinary frequency/urgency when on abx and had another bout of it quite recently when switching my treatment around.

Another member recommended a supplement that her LLMD had her take for this issue: D-mannose. The stuff works amazingly well!

Best of luck to you moving forward!


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Welcome Both oars in the water!!

So sorry for the reason you're here but glad you found us.

What type of test did your doctor run? What were the actual results? Most doctors run Lyme tests through mainstream labs like LabCorp and Quest that don't run the proper tests.

I, too, was bitten by a tick but didn't develop the rash. Depending on where you read, most people (more than 50%) don't develop the rash.

It does sound like you are dealing with Lyme and I suggest you do whatever you can to see a LLMD (Lyme-literate MD) because mainstream doctors just haven't had the training to recognize nor properly treat Lyme and its coinfections.

It would be best for you to start your own thread titled: "Looking for LLMD in (insert farthest distance you're willing to travel)".

You'd need to enable your email option via your profile so members can contact you directly. We don't allow sharing of doctor's contact info in the forum for privacy reasons.

To enable:

Click on "My profile"
Click on "Edit profile"
In the optional information section, be sure "Show my Email address" is checked off
At the bottom of that page, click on "Submit"

LLMD's are trained to diagnose clinically - based upon symptoms. Although, many will want to run some tests for confirmation and LLMD's know the most reliable labs for those tests.

Please read through the "New to Lyme? Start Here!" thread that sits at the top of the forum. It's chock-full of great information including questions you'd want to ask a potential LLMD.

We will support you throughout your journey for as long as you'd like company. Just keep asking questions.

Good luck!

To answer your question about the type of tests, I called my doctor's office and talked to his nurse who said I had an antibody test on 9/10/15 and a western blot test on 9/23/15 with results on 9/28/15 showing "everything was negative".