Introducing Myself and My Lyme Disease Problems

Hi Maverick!
Welcome to our community! I'm so glad you found us!

Unfortunately, it sounds like you got the IDSA version of "standard treatment", which leaves many people with chronic Lyme because the bacteria was only suppressed for a few weeks, not beat back into remission as it needs to be.

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.

You will also need to see a doctor that was trained to not only recognize these infections (even without positive tests), and have an understanding of just how hard they can be to treat, as well as the possible co-infections that can keep a person from healing if they are not addressed as well.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, 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 send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can 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​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


And a new resourcewww.LymeDoc.org


​ You will want to find an ILADS trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.ilads.org/lyme/treatment-guideline.php

Welcome Maverick!

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

It looks like you and I are in the same boat - the standard treatment wasn't enough.

The herbal protocols crafted by Stephen Harrod Buhner are quite popular. Buhner is the author of 3 major books that address Lyme and its coinfections and the information shared within is based upon scientific evidence. He explains the infection and disease process and outlines what is necessary to heal.

Here are some links I created for information about his books:

tinyurl.com/buhnerbabs

tinyurl.com/buhnerbartmyco

tinyurl.com/buhnerlyme

Please be aware that thyroid issues can also cause the symptoms you've shared....and Lyme is famous for messing with our thyroids.

Have you had your thyroid checked recently? It's really important to get Free T4 and Free T3 testing done since they are the only tests that accurately reflect thyroid function. And, those test results need to be interpreted by a thyroid-savvy doctor (most aren't).

If you have Free T4 and Free T3 results you'd like to share (at any point), I will gladly show you how to interpret them.

No matter what, best of luck to you moving forward! We are here for you whenever you have any questions or need to vent.

It's incredibly hard to estimate cost of treatment because it depends on too many factors like:
-How many infections a person has
-how well the person's body detoxes
-what other co-conditions the person has/has developed
-how long the person ends up needing treatment

Have you ever been hospitalized while trying to cure yourself naturally of Lyme? I want to know if it's safe for me to go through the Buhner protocol while I'm working full-time. I so desperately need to heal but don't know if it's going to cause me such bad symptoms from detoxing that I won't be able to work.

Thanks in advance

Maverick6981 said...
Have you ever been hospitalized while trying to cure yourself naturally of Lyme? I want to know if it's safe for me to go through the Buhner protocol while I'm working full-time. I so desperately need to heal but don't know if it's going to cause me such bad symptoms from detoxing that I won't be able to work.

Thanks in advance

Maverick

I've never been hospitalized since dealing with these infections but I don't know how you'd be able to take herbs in a place that only gives out FDA-approved stuff.

Buhner's protocols are safe and people do work while following them but it can be challenging at times...I know it was for me and I have a home-based business. I took care of myself as much as possible and let things go at home that could be let go.

Your ability to handle treatments depends on how well your body detoxes, how much stress you face and how you manage it, how much rest you can get, how good you can keep your diet, etc.

I suggest that you consider starting a daily detoxing protocol now and certainly continue with it (and add to it) throughout treatment.

All the while you've been infected, the bugs have been creating toxins which are the cause of your symptoms. As the bugs go through their life cycles, they're also dying which means a huge increase in toxins ala the dead bug parts.

People who are suffering horribly with symptoms are "backed up" with toxins and need to get them o-u-t out.

Heck, most Americans are already dealing with a toxin load due to the 300+ chemicals we're exposed to daily.

Bottom line, an effective detoxing protocol will go a long way towards helping you feel better and, most importantly, manage your treatments.

You need to start slowly because the mobilization of toxins can actually make you feel worse. Be sure to keep your bowels moving daily (sorry if TMI) and drink a LOT of water so you can flush those toxins out.

Here's a great link about detoxing - why we need to do it and suggestions for a bunch of methods:

www.tiredoflyme.com/detox-methods.html

The next link is to a recent thread wherein members shared what they're doing for detoxing:

www.healingwell.com/community/default.aspx?f=30&m=3602759

Not counting the daily exercise I've done my entire life, my daily detoxing protocol consists of at least 20 different methods....and takes no more than 5 minutes total out of my day.....maybe 10 if you divide up the time I spend shopping for the stuff ;)

I think it is doable to work and take the herbs. I have never been hospitalized due to lyme. If you can take your morning dose at home, pack your lunch dose and get home to take your evening dose, you should be able to work that out.

Detoxing at work is drinking lots of lemon water. Just water with a splash of lemon in it. Maybe a 5 minute walk during the day. Maybe a salad with cruciferous vegetables on it and apple cider vinegar with a splash of lemon as a dressing. You have just done 4 detoxing methods.

I also love Beyond Balance Tox Ease. I think you need a practitioner that will order this for you or give you their code to order it. You can call Beyond Balance and ask them for the name of the closest doctor that uses Beyond Balance. I like this one because it is easy and convenient in either pill or tincture form.

I think you will be fine working and treating. I think you can do it! We will help you with suggestions as you need them.

I am coming from a very low place today. I haven't felt this bad except after I was diagnosed. I don't know what's going on, I can't focus on anything for the past 3 days. My energy levels are through the floor and I really don't feel like dealing with people. I need something to at least get me back to feeling well enough to do my job. I just ordered this in hopes that it will help with the brain fog. http://www.amazon.com/Nutramedix-Pinella-Brain-Nerve-Cleanse/dp/B004GXJYHC/ref=sr_1_1_a_it?ie=UTF8&qid=1460045667&sr=8-1&keywords=pinella+brain+nerve+cleanse

Post Edited (Maverick6981) : 4/7/2016 10:10:58 AM (GMT-6)

As far as daily detox methods, what do you guys do? I'm thinking of incorporating rebounding and epsom salt baths every day. Are there any other things you recommend?

Hi Maverick,
I healed my 40 year old infections with herbs only, and I've not ever been hospitalized with severe herxing, or anything else since I started using herbs. Before I started using herbs, I've been admitted for a number of reasons, which is why I avoid it any time possible now!

In order to avoid a massive herx when you treat, you have to learn to listen to your body- it really will tell you when things aren't right, and if you heed those feelings, and detox or adjust your doses as needed (we can help you know when to do this), you will likely make it through without putting yourself in any danger.

I would, however, highly suggest that you buy Buhner's books and take the time to read through them. They are packed with all kinds of helpful information.

With the experience that I had personally, and what I've watched others go through, here is what I believe needs to happen for many of us to heal:

a)Detoxing - gene mutations, mold exposure and multiple tick-borne infections can all prevent us from detoxing well, but we must be able to get those toxins out of our bodies. I have not had any of the gene mutation testing done, although I do seem to have the same kind of issues as those that do - so I figured it was best for me to assume that I did and work to get my body to detox much better. It took a lot of diet changes as things with my body changed, I used a foot soak daily, dry skin brushing, making sure my bowels moved at least once a day (sorry if it's TMI!) pushing myself to drink at least 64 ounces of lemon water each and every day, liver/gall bladder flushes (all natural), oil pulling, taking apple cider vinegar, taking activated charcoal and keeping the amount of stress in my life at a bare minimum. You can find some really good detoxing suggestions in the "New to Lyme?" thread that sits at the top of the forum:
https://www.healingwell.com/community/default.aspx?f=30&m=1606610

And, as PeteZa suggested, this is another good list of possible detoxing routines: http://www.tiredoflyme.com/detox-methods.html


b)Supporting the body functions/systems. We have to have the body working at it's peak performance to heal from something as devastating as these infections. Supporting any gland, organ, body system that is struggling will allow the body to switch it's 'concentration' from just trying to function over to healing.

c) Raise the immune function. Many legitimate Lyme researchers now believe that it's the lowered immune function that determines who gets chronic Lyme and who heals right away. We already know that Lyme lowers the immune function and when a person has Bartonella and/or Babesia, the immune function is further compromised, so to heal we must raise our immune function.

d) Lastly, oddly enough, are anti-infective treatments. Many of us have experienced treatment failures​ or set backs​, so we can see that the treatments aren't the only thing we need to have - there has to be more to the equation, but anti-infective treatments are very important!! Lyme bacteria are one of the most complicated bacteria! ​Although it takes only hours or days for most bacteria to replicate, Lyme bacteria only replicates in the body every few weeks.​

Rest, lots of water, take vitamins - stay as calm as you can. Fretting causes stress and lyme loves stress. It seems when we are stressed lyme thinks it is a playday and it roams around causing havoc here and there in our bodies.

Eat healthy good foods. Cut way down on sugar. Lyme loves sugar.

Yes, please. Alcohol lowers the immune function and stresses the liver.

I haven't ordered anything else yet. I am waiting to read Buhner's book before I make any other decisions. I am just hoping to clear up my brain fog in the mean time. I feel much better today and I think it's because I took too much melatonin the night before. No matter how small a dose, it always leaves me feeling groggy. I can't wait to start the Buhner protocol. It looks very affordable. How long does the Buhner protocol last and can I heal myself completely with it?

Thanks