False Positive Western Bot

And that, folks, is what we have to keep checking!!! What are the sources for this misinformation??

When we find one that has some source listed, we have to know the players - Dr's and so-called researchers like Dr. Gary Wormser and Dr. Paul Auwaerter. So they got their Dr's license, but that doesn't stop them from being in the center of this political fight and they are slinging mud as fast and as far as they can.

To them, chronic Lyme is only PTLSD, post-treatment Lyme disease syndrome. These 'drs' state they do not know the cause of the syndrome. They concede that up to 1/5 of the patients treated for Lyme disease by IDSA standards have persisting or lingering symptoms, though!!! Those numbers are actually higher - quite a bit higher I would guess.

The IDSA wields a LOT of power, never think otherwise. The CDC turns to them - at the exclusion of anyone that disagrees - on many subjects, and Lyme is one of the worst. We have been denied having a representative on the committee that decided treatment guidelines over and over again. Or they find someone they can bully into agreeing with them on whatever they need.

The last time they had a patient advocate on their panel, that person knew NOTHING of Lyme, and had NEVER even known someone with Lyme - so of course, they will agree with the IDSA, as they likely won't question where the IDSA docs get their information and dig deep like people like me have. Deep enough to find the REAL story of what's going on - and it's totally disgusting.

As someone mentioned, this is just like what happened to those with HIV/AIDS back in the 80's. There have even been comments from at least one person that was deep into that movement that have said that The Lyme movement is going through the same things as what the HIV/AIDS Movement went through. HIV/AIDS is something that is now accepted and good treatments have been found - but not after a very long and very hard (& vicious) fight.

Okay.....stepping down off the soapbox and backing away slowly.................. Sorry for the rant - it was directed at only this situation which is incredibly frustrating, as the elected officials won't even listen to me, even though I have studies (& my own medical records) to back up what I'm saying, simply because they don't want to get in the middle of this!!!!! Grrrr!

cd3764 said...
Great link, Girlie!

Sick5 - I'm sorry if my comments were confusing. I was trying to say that the information shared in your link is a typical to the extent that these are the types of things you'll read from countries, health departments, doctors, etc. that don't believe in Lyme.

It's very similar to the situations surrounding the HIV/AIDS controversy years ago.

Lyme diagnosis and treatment is compromised because of politics....and people such as yourself are suffering needlessly.

I hope you can prevent yourself from becoming distracted by the erroneous information out there and, instead, focus on getting the proper care.

Oh..... Silly me I though you couldn't open the link
I understand the fight with government Lyme has caused but it's wrong. No one should have to be made to feel like I was yesterday. My GP is not the right doctor for me it's very clear now. I need someone who's open and willing to listen and see the whole picture. I'm not going to be made to feel like I was yesterday every single time I need something from him.

YAY!!! We are soooo happy you have seen this, Sick5!!!!

Not enough doctors understand enough about tick-borne infections to even treat us properly, much less to be sympathetic!

Now it's time to move forward so you can heal and get on with your life! Forgive me for being so excited, but for you to get to this point is exciting for me, because you just opened up to the possibility of healing from this!

So now your next steps need to be cleaning up your diet if you need to - lower carb, no sugar, very few processed food, no fast foods, and drinking lots of water.

Start detoxing - we have some great suggestions in the "New to Lyme?" thread and we will be more than happy to explain any part that you aren't sure of.

And finding a doctor that really is trained well enough to help you heal from these infections!! 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 and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can start a new thread titled something like "Looking for LLMD in the (insert the nearest larger city & state) area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.


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


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​​


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

That really is awful. It's such a shame that you have to deal with attitudes like that when you're at your sickest. It makes me so grateful for my LLMD. I hope you can find a good, open minded doctor to help you through this. If not, or even if you have to deal with a long wait-list for an LLMD, you might consider treating yourself with the Buhner or the Cowden protocol.

Sick5 - I'm sorry the Canadian's story made you cry. But, I just wanted to show you how screwed up it is....just think if they hadn't pushed back...and demanded answers...she was going downhill fast.
Thank God for her husband, as in this case, she needed an advocate.
He is fighting for change...and wanting to make some good out of this horrific experience.

I also wanted to share that this is one of so many, many, many cases - not just here in Canada, but world-wide...of undiagnosed/misdiagnosed cases of lyme disease.

"They" all talk about false positives...but nary a word on what happens to false-negatives...or positives that are ignored/denied...etc.

You can get treatment here in Canada, if you want...or you can go to the U.S. You do have options...and although it's expensive...in the long run...it's more expensive to wait...as the infection just gets larger, and takes longer to treat (in most cases).

For our family, the biggest financial loss doesn't come from the LLND appointments and antibiotic/supplement costs - it's the wage loss because i am unable to work. So, the sooner I get back to work, the better off my family will be.

So, if you want to do herbal treatment, it is possible to stay in your Province. If you want to do antibiotic treatment - you can go to the U.S., or travel to B.C. Dr. C in BC - will do follow up appointments of 1/2 hour (usually) and his cost is quite reasonable...you can email me if you need more information.

Traveler said...

Sick5 said...
Thank you I have started eating like you have said for two months now. I wanted to be ready for when I took the antibiotics and to see if I could do it.

The detoxing baths?

That a good place to start. If you can do them, then start off with only 10 minutes in the water until you can determine how well your body will handle them. It will all be up to how well your body can detox.

There are other things that are simple and you won't have to necessarily monitor yourself and adjust to how well your body detoxes though - things like dry skin brushing - which not only lifts off the top layer of dead skin so more toxins can be pushed out that way, but it helps to stimulate the Lymph fluid to move through out your body easier. The Lymph system is the first line of detoxing in the body.

Oil pulling is another good thing to do.

Lemon water, although it's best to either rinse your mouth or use a straw to protect your teeth from the effects of the lemon.

You are on your way to feeling better!!! YAY!!

Ok I will get all those things I will need for the baths. They don't seem to diffecult and I do drink lemon water everyday

Good news Sick5!! You are taking the first steps toward healing - preparing your body by eating healthy, developing some good detoxing - that is great!!

Girlie said...
Good news Sick5!! You are taking the first steps toward healing - preparing your body by eating healthy, developing some good detoxing - that is great!!

I'm trying to get my mind set right so that I will be able to make all these good changes. Another question I had was colon cleanses? Any advise?

Traveler said...
It would depend on if you are having any issues with your digestive tract. Many of us deal with some kind of issue, like constipation, or diarrhea, bloating. In general, I think Yogi makes some good detox teas that can be used by most people. A good liver/ gallbladder cleanse would also clear out the intestines. So it all depends on what you are currently dealing with and what your goal is.

Constipation bad constipation

MsHippo said...
Sick5, I'm so sorry you went through that. I've envountered similar situations and it always seems so surreal to me. I can't believe it's actually happening. I'm glad you're getting some good (and accurate!) information and support here.

Traveler, every time I read your posts, I think "why can't I think of all that when I'm trying to explain things to doctors, family, friends, etc". I always feel so good and informed after reading your posts. Thank you for doing what you do!

Also, in regards to constipation as Sick5 mentioned (there's really no good segue for that, lol), I take magnesium citrate. It's a good brand - no gluten, sugar, additives, etc. Is that a good option? Is there something that anyone else would recommend?

I'm working on that very diet.....gluten free and suger free are freaking HARD I was taking magnesium but don't have a good reason why I stop. I will get myself some really good one and try again. Thanks for info

twinmkm said...
Sick5, I will be honest, I did not read ALL of the comments, but I think I have read enough. I am so sorry you are feeling this way and I feel terrible about your doctors appointment. I have personal experience of going to a doctor, who I had a lot of respect for, and after bringing up Lyme Disease she started treating me like I was below her and no longer an intelligent individual. I also went through a period of extreme denial. I will be honest, I am still struggling with whether or not I am doing the right thing, but I am trying to take it one day at a time. I am sorry you felt attacked and I am sorry you are going through such a hard journal. If you need to talk, or vent, or anything else, please feel free to email me. I may not know much about treatment and politics, and diet (I am only 20!), but I know a lot about the struggle I face everyday. Good luck with everything and let me know if you want to talk or if you need anything.

That is very sweet of you Thank You!! Yes, I too I'm have a hard time dealing with all this. It's very confusing as there is no real agreed apon information for chronic Lyme. All I know is I want my life back and I want to feel better. I'm going to give treatment a try because I really have nothing to lose.

Sick5,
What have you tried for your constipation - it will be much faster if you explain what you have tried/used and what did and didn't work rather than us listing all the potential things you can try.

I have had severe constipation (causing pseudo-blockages for 2 -3 weeks at a time) for most of my life - it was only when I was around the age of 47 that I finally found a way to deal with my intestinal issues. So I can most certainly understand.

If you would feel more comfortable talking about this off the forum, just send me an email, okay?