Feeling overwhelmed/scared.

Welcome Joeyphoenix!! I'm sorry you are battling this illness, but I'm glad to hear that you were aware of it so you came to your own conclusion. How long do you think you've been ill?

If you read through the "New to Lyme" thread at the top of the page, you'll find several things you can do for yourself, even some herbal protocols you can do on your own.

Diet is very important. Keep the sugar intake low and eat a lot of vegetables, especially greens. Keep the fruits lower since they have a higher amount of sugar than most vegies. A lot of people feel better with keeping their carb intake low too. Good quality protein, such as grass fed organic beef and other organic animals raised on a species appropriate diet. Local farms and natural food stores can be good sources for organic foods.

That's all my sleep head can think of for now. Tell us more about how you came to know you have Lyme disease.

How much a rhuematologist will help partly depends on where you live. If it's in a state where Lyme is very prevalent, than the chance of her helping you might be better. Can you call and inquire about her knowledge of Lyme before you go to her? That's what I'd do.

A lot of people go through the same thing you are, even many who have a diagnoses already. So keep up the fight until you find the help you need.

I was the first person to respond to Joeys post. I spent a lot of time and put heartfelt info just to encourage him and now my post is gone. If it was deleted could someone explain why. I shared my experience to show it was similar to his and he was not alone. I even went back into the thread after I posted to be sure it was saved, now all that effort gone very frustrated.

Thank you wwjd20!!

I'll definitely check out that protocol :)

Sorry to hear that happened Roxie! I appreciate the effort :)

Hi Joey,
First of all, who told you this? :"I'm having trouble coming to terms with the idea that I won't get any relief from my symptoms in a long time."

Once I got started treating my Lyme infection with a protocol that my body could tolerate, I was feeling better in 2 months - and I had been infected for literally 40 years before I started that protocol. You too should begin to feel better in just a few months.

I would say that starting Doxy at such a low dose would actually put you in a worse situation than where you are now. That low of a dose won't do anything other than stop the bacteria from replicating - it won't kill any off, so you will be giving them a head's up for what's coming and they will go into their cyst form or hide in biofilms to avoid being affected by the abx.

If you don't wish to wait to start treatment (& who really does?) then I would suggest that you start detoxing well & lots, and start on some herbs. There are herbs that are just as effective as the Doxy if you are interested. They are called Samento and Banderol.

Well, I can tell you that Quest Diagnostics lab is one of the worst for sensitivity for tick-borne infections! So much for them being a "real" Lyme clinic or they would know this already. That should be a big red flag.

Igenex isn't the only lab that gives fairly decent results, Stoney Brook labs do as well and there might be one more that I'm not remembering the name of. I would suggest that you check out that clinic very, very carefully to be sure that they are using reliable protocols and not just there taking everyone's money. What are their "cure rates"? What protocols do they use? How long are people generally being treated there? Things like that. We do have a great list of questions that you can use on page 2 of our "New to Lyme?" thread.

LOL! thank you for your kind words! I do my best, I've been at this a while! LOL! I continue to stick around here because I was once in your shoes, and found it to be incredibly frustrating and scary!! I really don't want anyone else going through this feeling alone.

We can help you find another LLMD in your area if you wish.

JoeyPhoenix -

I second Traveler's advice to you! In EVERYTHING she wrote!

1) $5000 - That is alot! I believe Igenex testing will run less than $1000 for their Lyme Panel and their Co-Infection tests. They are considered the best.

2) You can do the Lyme Herbs. They are POWERFUL! against Lyme. Seriously. If you are anything like me. I was weirded out by taking herbs. It was just such a huge unknown. But after ordering and reading Healing Lyme by Stephen Buhner and reading his website I gained confidence in the power of herbs. His book is very scientifically based and that helped bridge the gap. After taking the herbs, I trust in their power and ability to kill the bugs and bring healing to my body. I also believe in antibiotics very much to do the same thing but if I was in your position I would get those herbs ASAP but first I would...

3) Detox - for a week or two or 2 months because the toxins froms the bugs cause symptoms to be much worse. I know it is a common buzz word for our society and every one is doing some sort of cleanse these days. I really didn't try detoxing until a year into my Lyme treatment and BOY! did it make a difference. It reduced my herx reactions to the herbs/antibiotics by 75% and more. So I learned it is a big deal. I tried coffee enemas (when you feel yucky you are willing to try anything!!!) and those helped about 25% reduction in symptoms but Zeolite for me was the kicker. I got huge relief from that. I took powdered Zeolite and added it to water.

4) Just because the practitioner doesn't use Igenex labs doesn't necessarily mean they don't know what they are doing, but it really raises the question for me becuase Igenex reports all the bands on their Western Blot test and Quest doesn't so you could get a negative from Quest when you are truly positive. That is why it is questionable. Dr. Burrascano is working with Advanced Labratory Systems and they are able to culture Lyme from your blood and this is also a very good test because it basically is undeniable proof you have Lyme from that test. That test runs about $500 I believe.

5) When starting treatment, my LLND started me on herbs and then added in the antibiotics.  She believes that herbs are a gentle way to transition into the antibiotics for the body as well as they support the immune system.  So you could just think of this two month period (if you choose to detox and/or do herbs) as part of your treatment!

5) I've written a book (!) but I just want to give you the information I would want if I was just starting out in your position.

 

Post Edited (SLML) : 1/25/2014 11:08:01 AM (GMT-7)

Sorry for whinging guys. I hard wrote a long heartfelt try I thought would be an encouragement to joey. I know stuff happens. I was just very irratible when I came back to this thread and so more susceptible to frustration. Of course I can't recall much of it but I know it was a good post ;-). I seem to be experiencing more mood swings, is that part of recover??? Anyway sorry to all for the earlier whinning.