CDC admits Lyme under-reported and why this is an extremely important fact for those with Lyme.

A few months ago, the CDC finally publicly admitted that Lyme cases were vastly under-reported in the US. One of the main reasons this happened is because their surveillance criteria are set so restrictive. I can understand why (so they don’t include cases that are guesses) but at the same time aren’t they pointing out that the diagnostic quality of the tests for Lyme (early and late) are terrible?

They have also said, in the fine print usually, that positive tests are not needed to make a diagnosis of Lyme disease . Let’s forget about the bull’s eye rash cases for now, since those are usually pretty clear. They also mean there is no lab test positivity needed for Lyme without a bull’s eye rash and that it can be diagnosed on clinical symptoms as well. This is usually missed by mainstream medicine, partly because the IDSA has their little guidelines for diagnosing Lyme that say you must have a positive ELISA and western blot.

The CDC making this admission now is very important because it, in a sideways sort of way, says: Yes, the diagnostic ability of the lab tests are awful so we can’t keep an eye on Lyme patient surveillance numbers that way. Also, the IDSA guidelines aren’t helping the matter. Now we (the CDC) have an agenda for putting this number out now that will help us more than the fact that we lied to the American people will hurt us.

It also very clearly says (I believe) that the way things are now, if providers do NOT want to continue to miss a HUGE chunk of people with an illness where it is extremely important to catch it as quickly as possible, they will have to clinically diagnose Lyme disease, learn the symptoms and STOP relying on lab tests to do the hard part of your job.  

More than likely, though, the CDC is just gearing up to promote the newest not-a-vaccine vaccine they have been working on … for a disease the IDSA has said over and over (and the CDC agreed with) is hard to catch, easy to treat.  

Because that, of course, is the best sort of disease to target with a vaccine.  Amirite?  0___0 

–Loon Out 

iherb–Place to get liquid Samento

Found another site where they have the same brand I had used before with so much luck! It is still about $17 for the same size bottle. If you are just starting out using it, this bottle should last 1-2 months since you start out at just 1 or 2 drops a day. Not dropperfuls–drops. 🙂

Let me know how it works for you but please see the link I posted in the below blog post for medical info on this powerful herb. Especially want to be careful if you are using blood thinners, but there are other interactions. Not many, but some certain people may need to watch out for.

I would say consult your doctor but unless you have an LLMD, they might not know anything about this medicine.

*I am not a doctor, of course. Only sharing my experience.

As always: You have to advocate for yourself in the medical world these days. Hippocrates said: If you are not your own doctor, you are a fool. 🙂

Liquid Samento Information

I first tried liquid Samento when I failed antibiotics. I had no insurance at the time so I could only try a few cheap antibiotics, and I didn’t want to go the IV route yet. I asked about Samento, and my doc said he had heard good things about it but did not know if it worked for everyone. He said I could try it, see how it worked for me. so I did.

Ordered some online from Vitacost, nice sized bottle for $17.00, Source Naturals brand (which I can’t find now by the way in liquid. Not sure why). Anyway. After 2 weeks I felt a difference. And it couldn’t have been placebo since I really didn’t think it was going to work.

It got me about 80% with residual deconditioning after being sick for a few years. Then I hit a plateau. I tried to use it later and I started getting severe tooth pain whenever I would start it again (story for another day) so I just left it alone for a while.

Fast-Forward to yesterday. I had been wanting to get back on it again since I figured out the tooth problem but was afraid it would make me too sick to work. I never really had much in the way of side-effects from it, but it would sometimes make me a bit sicker than usual. Nothing as bad as doxy ever did though. But I had a new job I didn’t want to risk.

So Sunday, fed up with feeling really awful I took about 1/2 a dropperful. I wouldn’t recommend that to those who have never used it before, but I am sort of used to it. I figured lately I had been feeling so crappy because of some crud the boy brought home from school that my immune system couldn’t fight off, the Lyme coming back, or a mixture of both. Thought it would take at least a week or to get any better.

TWO HOURS LATER I felt well enough to clean up the storage room; something I had been wanting to do for weeks. Only about an hour’s worth of work but for the past many weeks, 10 minutes of straight cleaning was all I had if I was lucky. Had some phlegm bugging me as well–that is mostly gone too today.

I know it doesn’t always work like this, and maybe it was just a fluke, but I recommend this stuff to anyone who needs something else to try.

Here is a link for more info on the herb and any possible drug interactions, etc. SAMENTO

You don’t have to believe any of that, or what I say. Just try it, expect nothing, and see what happens. I don’t know if it says at the link or not, but it has been used for chemotherapy patients to build up their white cells. That is its basic mechanism of fixing Lyme. I don’t have a very good immune system so maybe those who DO have a working immune system won’t get much benefit.

Let me know how it goes!

Again, I can’t find the stuff I have used by Source Naturals so the next brand I am going to try is the NutraMedix.

Stretch-marks, red lines can mean Bartonella

If you have symptoms of Lyme disease, and they are predominantly neurological, you may have a Bartonella co-infection. Not that they even know for sure it IS a Bart. organism. It could be a Bartonella-like organism as one of the experts stated.

Here is an example picture, stated by a doctor in the area to be a classic Bartonella “rash.” No recent weight gain, growth spurt. These did not fade for a couple of years (after she was on treatment). They are not above the skin, they are below it.

Please see a Lyme literate physician if you have something similar.

By the way– ***Hello Brazil!  I don’t know if it’s the same person coming back to this page over and over, but my stats say that this page is popular in Brazil. Leave a comment! Tell me why this is such a popular page over there.  🙂 


I am happy to report, by the way, the person in the picture is doing pretty well.  However, she does have some residual symptoms.  It was “lucky” she did get this “rash” because it helped give some outward sign that something was just not right.  The more people understand all the different objective signs, rashes, and are able to identify them better than they have been, the more people will be getting diagnosed and, hopefully, believed

–Loon Out 

They Don’t Know What They Don’t Know

I get to hear a lot of different stories about how people were diagnosed, their symptoms, how their friends and family reacted. Sometimes it just drives me crazy, though, to hear how some physicians are so terribly clueless they don’t even think about Lyme. At all.

One example: A lady who had been diagnosed with fibromyalgia many years before asked the doc if she might have Lyme on top of it, or instead of it. They tested her back when she had a tick bite, a screening test, and it was negative. This physician told her that even if she did have Lyme back then, she couldn’t possibly have it now. The patient could not remember if she was treated with antibiotics just in case back then or not. The doctor didn’t even ask either. So I wonder. Where did the Lyme go? If it is just going to magically go away, why treat anyone ever?

Another example I didn’t hear directly, but it was relayed to me by a friend. Apparently she had been going to the doctor for years, was ruled out for a lot of things but still had pain, joint problems, headaches, memory issues, numbness … the list went on and on. She then developed an acute case of Lyme and had a rash so was given antibiotics. She stated that she couldn’t wait until this “little bout of Lyme was over” so she could get back to fixing all her other health problems. Unfortunately, in the 2 months since she was diagnosed she had been given steroids. I’m not sure why, if whoever prescribed them didn’t know she had Lyme, if they didn’t know that would be bad … I’m afraid her little bout of Lyme was not going to be over soon. It could have even been the problem for all her other issues as well.

How do you even start to fix a problem that seems so deep … it isn’t even on people’s radar? 

Loon Out

Almost Human

So who else is awaiting this new show?  It has so many great things in it!

  • It’s SciFi
  • Has great actors
  • It’s on Fox
  • Love the name ….

Almost Human.  I think others with Lyme can definitely relate to that.  Many days  you just feel so off, like you are not yourself.  Other people, including physicians, sometimes make us feel like we are less than human.  We couldn’t possibly know what we feel, experience, think, or KNOW.  We are a lab value, a medication list, a problem patient.

Most days, though, I feel More than Human.  Not in an I’m-Better-Than-You sort of way though, but simply the fact that I survived this far makes me feel I’m more than normal now.

This is one gift this disease has given me.  Even though it has made me feel so powerless at times, it has also made me actually powerFUL.  I have personal knowledge of how this disease can work. I know I can make it through anything. These are 2 very valuable things.

Don’t lose sight of your worth.

Now imagine Karl Urban saying all of that in his awesome voice …

–Loon Out