Please HELP! confused, overwhelmed and in need of support

You are definitely not crazy. I've had many of the symps you describe. It is very frustrating and many here would agree with you regarding western medicine. Check the new to lyme thread and follow instructions to find an llmd close to you. If you go thru igenex for testing you will need a drs order so might as well find llmd or lone. The fact the you had band 23 would be an indication you have been exposed to lyme. If you have time read some of the threads here and you will likely be sitting yelling at the computer "that's me" when you read others accounts. This is a maddening illness so hopefully you will find some support here till you see some improvement. Ask questions, share when you can. Don't give up.

I also want to add a random thing! A few times (hasn't happened recently) I had both eyes turn bright red, inflamed painful for days.
Looked like my eyes were bleeding- like I could scare children. Eye doctor gave me some random- blah blah blah, not really a definitive answer type answer. Lyme? Sorry my brain is recounting all the symptoms that had no answer!

If you ate up to it Google BetterHealthGuy and lyme testing, there are more links with more detailed test results but can't think of them right now. You will find a lot of discussions about lyme bands here, many times the threads are titled with igenex or lyme tests.

Can't personally help you with that eye dump (I had different eye symps than yours) but I think I recall some others here discuss that symps. Sounds awful and scary.

Hang in there Kissa22. You are not alone.

I'm new to lyme/co-infections (lyme/co). I've recently gotten a positive IGeneX, and even with that, the llmd I saw said I don't have lyme. I'm now going to see a naturapathic doctor on Tues.

I have almost all the symptoms except rash. I know I have lyme and co-infections. If you feel that you do, too, then you probably do. That's the start of getting the help needed.

This path you're on might take time to get the care you need. Don't give up. We are here so ask for the support you need from us, and don't give up. Your path is your's. We can't know what is best for you. This takes time and research to get the help needed. It can be done. You'll need to work to get what you want. And, you'll need to figure out what you want. It sounds like you want to go with a holistic protocol. That's great if you have an idea the route you want to take.

See if you can locate a lyme literate naturopathic doctor (LLND). I can't help with that, but if you post a topic asking for that in the area you are in: (Lookin for llnd in______,__) That can speed up info coming your way.

Hang in there. It's scary, but it's ok. People heal from lyme/co. They really do. You can to. Believe that. In my opinion, how we view our life with this dis-ease will either help strengthen our healing, or weaken it. Believe you will heal, and you will have a better chance.

And, another thing to think about is that you are not lyme. You are still the you you've always been, and one day you can be that person again, but better! Just not right now. Giving ourselves the time and grace to live through this, to heal, is a gift we can give to ourself and those we love.

Welcome, and remember, you are not alone.

Post Edited (In_A_Cocoon_Now) : 1/19/2014 12:39:05 AM (GMT-7)

Hi Kissa!
Welcome to our community!! I see that you've met some of our wonderful members that have likely been through a lot of what you are trying to deal with now. This can be an amazing place to be with all the help, concern for each other and support that is offered here daily by our members.

As has been suggested, please do read through the "New to Lyme? Start Here!" thread as it has a ton of really important information about these infections, including symptom lists (Lyme rarely is the only infection that is passed), detoxing instructions (very necessary), and much, much more.

The tests for these infections leave a lot to be desired. I was on very strong abx (antibiotics) for 12 months before I finally tested fully CDC positive for Lyme and RMSF. Most all of these blood tests rely on the immune system to produce antibodies, but the bacteria can actually overwhelm the immune system so that it can't produce them and can even hide from the immune system.

Yet another issue (although there are many more) is that at last count there are over 100 different strains of the Lyme bacteria in the US alone - 300 world wide - and even the best labs will only test for 4 or 5 strains.

To list ways to find a Lyme Literate Practitioner all in one spot:

You can start a new thread titled something like:"Looking for LLMD
/LLND in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

And as others keep saying.... you're not alone!!!

You are not alone! Ever.

This has been the scariest ride that I've ever ridden. Glad you have reached out. Hang on to the glimmers of hope. The best thing for me has been to get off the internet, sometimes, and meditate, come back to center. This disease has me always worried about the future what-ifs, and I'm often too scared to live in the present with the scary symptoms. I think that yoga helps.

Hang in there. Hugs.

A LLMD is a Lyme Literate Medical Doctor.
ILADS is International Lyme and Associated Diseases Society.

A LLMD can join and be trained by ILADS, but ILADS doesn't "treat" people - they are a society.

In my honest opinion, if you are going to use a LLMD, it's best to find one that is ILADS trained - that way you know that they aren't nearly as likely to try to use Infectious Disease Society's standards for treatment.

I hope that clears this up for you! If not, keep asking questions - it's the only way to learn!

It's so tough to feel yucky a lot of the time!! :(

Margaret