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Posted 7/18/2016 9:31 PM (GMT 0)
I am new here and haven't been diagnosed yet. I am at the point where I started having small seizures and cannot locate items in the store. My legs are ready to give out a lot of times or they burn and tingle. My chest will get very tight and sometimes burn. I also have an immune disorder for which I am being treated, I do not have antibodies and I get infusions every month of antibodies.

I have determined on my own that I have lymes disease. I've been having sinus infections for years now with two surgeries. I have had problems with brain fog in the past and losing my cognitive abilities. Anyway, I have an appointment with an LLMD in the beginning of November but am not sure how I will even survive before then. My doctors are pretty much through giving me antibiotics. I am finishing up a 14 day course of Doxy and have started Steven Bruner's protocol. I am afraid of what will happen to me when the antibiotics run out. Also these are barely enough to cover my infection as it is.

Does anyone have any advice? I went to the emergency room but was only treated for low sodium. I have an appointment with a Neurologist on August 22. I am afraid I'll be dead by then. I also have some colloidal silver here but it alone doesn't seem strong enough either. What can I do?
Posted 7/18/2016 9:51 PM (GMT 0)
jiggly, I am so sorry that you have gone through so much. Welcome to the forum. I think you will find a lot of help here and a good place to share your frustrations and be with others who share your struggles.

One of the first things I want to reccommend is that you read the first post. "New to Lyme-start here" There you will find a lot of information that can be very helpful to you.

One other thing I would recommend is that you Detox. It sounds to me as though you are dealing with a lot of toxins. If you go to this link www.tiredoflyme.com/detox-methods.html you will find a number of ways to detox. It is so essential to your treatment.

I am glad you are starting Buhners. Waiting till November to get on a treatment program is a long time.

It is very possible that you are dealing with candida also as well as some co-infections.

Have you been tested? I am assuming not. I would suggest that you call the Igenix Lab in Calif. and have a test sent to you. You will then need your Dr. to sign off on it and take it to a local lab for the blood draw and then they will send it in for you. If you decide to do this definitely do test 188 and 189 Western Blot.

Also PLEASE...start slowly on the protocol. Just one herb at a time and just a drop or two at a time. This is very important. I give each herb a week before starting a new one and ramp up slowly. If you start more than one at a time you will not know how you are reacting to them. Also I would suggest tinctures as this is easier to keep the doses small so you can keep herx's under control. That is something that the detoxing will help with.

Please feel free to ask as many questions as you need to.

I wish you the best in finding the answers.
Posted 7/18/2016 9:58 PM (GMT 0)
HI Jiggly!

First, I am so sorry you are struggling like this - you have a lot going on. But I'm glad you're here - you're in the right place.

Your history sounds an awful lot like mine - with the exception of the immune disorder. Legs giving out, seizures, burning, sinuses, tight chest...

I had chronic sinusitis that got so bad it turned into bronchitis - MDs gave me 8-9 different courses of abx and steroids that only made me worse. I finally self-diagnosed a fungal problem, and a couple doses of antifungals later--problem solved. However, all of the various abx seemed to stir the hornet's nest and I finally had very clear, diagnosable lyme & co symptoms. I found an LLMD and the rest is history. I'd gone 16+ years untreated.

I don't know how the fungal sinus issues started but that might be something to look into if all you've treated with are abx. MDs don't have a CLUE about yeast/fungal issues and they sure don't suspect them as far as sinus problems go. You can ask to be cultured or check out the other yeast/fungal symptoms and see if starting an anti fungal Rx would be helpful (if your sinus issues are fungal in nature, natural antifungals aren't going to be much help).

And the complication w/ yeast/fungal issues is that they cause a lot of the same symptoms as lyme & co so having all of those conditions compounded makes it very difficult to know what's going on, know what or how to treat, or know how well your treatment is affecting the symptoms. I recommend people start lyme & co treatment with clearing all yeast/fungal issues first, then move toward the lyme & co treatment so that it's a much more streamlined process.

ER visits are pretty limiting - as they are looking for ways to triage major dysfunction and check for system failures. They're generally untrained/uninformed about lyme & co...

You seem to have a tendency toward natural treatments so there will hopefully be a short learning curve with detoxing protocol - which you can do now, on your own, without knowing exactly what to treat. There is a lot of info here on detoxing.

You might also start with reviewing the "New to Lyme?" thread at the top of the page - this will help provide an overview of lyme & co, treatment, what to expect, which might help you understand better whether or not your issues fit lyme. The very last page is my post on yeast/fungal issues, which might also be helpful if that is what also ails you. Of course, we all have specific conditions so you'll likely have questions that pertain more specifically to you so ask away...

Regarding your questions about the Doxy running out - what are you currently doing on the Buhner protocol? The detoxing will help you transition off the Doxy a little bit but if you have lyme you need to continue with an antimicrobial.

Also, you might want to partner with an LLMD - not sure if you already have one or how you got the Doxy Rx but if you're interested, you can start a new thread with "Looking for LLMD/ND in ______" in the subject and we can help you find someone.

Glad you're here - hang in there!

-p
Posted 7/19/2016 12:29 AM (GMT 0)
Hi Jiggly!
Welcome to our community! I'm so glad that you found us!

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html Detoxing for us is an incredibly important part of our healing.

As a matter of fact, I also had seizures as I neared the end the end of my abx treatment, because I wasn't detoxing. Back then, no one understood how important detoxing was. You may have the same issues and once you can work up to a really good detoxing routine for yourself, you may feel better. This is something I would greatly encourage you to work on as you wait for your LLMD's appt.

You can also work on your diet. You need to be sugar free at least because the abx and herbs that we use will kill off the enough of the good bacteria in your intestines to allow Candida and other yeasts and fungus to become a problem. To help keep us from having massive issues with those things on top of everything else, we also limit carbs, especially things like white bread and other 'simple carbs' as they break down into sugar too quickly. Complex carbs, like from vegetables, are what you need.

Some people are also dairy free, although I choose to only limit my dairy. There are quite a few Lyme diets out there, and others that people here are following, so you can have a look around and use the search function at the top of the forum in order to find more posts about diets. The only thing to remember is to put the word Lyme in front of all other search terms so that your results will be mainly from this forum, as there are many forums on this site.

Treatment guidelines to get you started on your healing journey:
www.lymenet.org/BurrGuide200810.pdf
Posted 7/19/2016 12:32 AM (GMT 0)
Just wanted to say welcome to the community and glad you found this resource. Buhner protocol has helped me make great progress... anti-biotics don't work for everyone from what I have read. Too pooped to add anything else. Just wanted to say welcome and send some good vibes.
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