questionable test results- year of sickness

I just turned 25 and I have 2 young boys, the oldest had Lymes when he was 3 (diagnosed without tests, he had a tick and rash, fever, aches so was treated with 2 weeks of Doxy.) I've always been worried that his treatment wasn't sufficient but he seems to be doing ok, other than recent bouts of lethargy in the afternoon, very strange for him. I'm concerned about my youngest as well since if I had Lymes, I may have had it while I was pregnant with him.

I want to find a good doctor who will actually take me seriously and who knows about Lyme but I don't know where to start. I live in north-central WI but would be willing to travel to see a competent doctor.

If anyone has any interpretation of my results or similar experiences I would greatly appreciate a response. And if anyone could point me in the right direction of what to do next I would appreciate that too! Thanks so much for reading,

Amy

Hello, my name is Tom.

Not positive enough means you did not meet the CDC requirements for a reportable case of Lyme disease. However, it doesn't mean you don't have Lyme disease.

The CDC requires 5 positive bands out of 10 tested for, which are 18, 23-25, 28, 30, 39, 41, 45, 58, 66, 83-93. You only tested for 3, so a doctor can refuse you treatment, saying that you do not meet the requirements for treatment. This is where the mainstream medical community will fail you.

There are labs in the country that have dedicated their work to testing for Lyme and have increased their sensitivity in testing to show that testing for only 2 of 10 bands is a 96% certainty that you have Lyme disease.

I could go on and on, but there is not much doubt in my mind that you have Lyme disease and need to be treated by a Lyme Literate Doctor, or LLMD. These physicians are dedicated to treating those of us with Lyme disease as much by our health history, as with lab testing. Even the CDC states on their website that Lyme is a clinical diagnosis, and that actual infection rates are as much as 10 times of that which is reported to the CDC. The country has been averaging between 25 and 30 thousand new cases a year over the last several years...so the actual number is more like 250 thousand.

One of the group leaders here is Jaime. Send her a PM (private message) and let her know where you are and she will give you a list of LLMDs in your area. You need to see one. We do not discuss the names of doctors out on the open boards.

Be prepared for a possible wait to see one. Also you should know up front that most of them do not take health insurance, which means you have to pay out of pocket and submit claims to your insurance company and get back what you can. Yes, it can get expensive, but what is the price of good health?

Good luck to you and your sons. Please feel free to ask any questions you'd like out here on the boards. This is a good group of people and you will get many helpful opinions and thoughts.

Take care and be well.

Tom

Def. find a Lyme Literate Doc and be sure to research, research, research in the meantime. Always be a step ahead of your doctor, especially where your children are concerned! If we didn't have the right doctors or do the research ourselves, we'd all be a lot worse off!

Welcome to MDJunction... this site has helped me more than any other!

Let us know how we can help!

I wanted to let you know you are not alone and you have chosen a great forum to ask questions and share your issues with this awful disease.

You received great advice from Tom and Clayton. I am going to PM you some info about a clinic in WI that another on the forum went to if Jamie does'nt have this particular info.

BTW I love WI as I lived there for nine years, three in Madison and six in La Crosse. However that is where I got infected with lyme 20 years ago and I'm just now getting diagnosed.

Good luck, take care and keep us posted, Denise

That makes me so mad they told you that your test results weren't positive enough....that's like saying your not pregnant enough!!!!! As you research this disease you will learn that there are a lot of politics, ignorance and greed surrounding this disease. I call it 'the maze of Lyme.'

You have received great advice from the above members...find an LLMD. Jaime has the list and will help you find one. I saw a doc in the South and I am fully recovered after having chronic lyme and almost all the coinfections for over 10 years (misdiagnosed). Plus, I was reinfected on May 13th of this year and easily recovered from that, too. So, we can get better...we really can . If your interested in the doctor that I saw, just pm me. Feel free to ask any questions that you have on your mind. Everyone on here knows by know that I 'marched to the beat of a different drummer' to get well. My doctor is a biological MD and I used a combination of homeopathics , herbals and nutritionals sups to kill bugs, support detox and rebuild my immune system. I also employed the services of an acupuncturist and chiropractor.

I would go ahead and have the children evaluated, too. It will be worth your 'peace of mind.' I had three children while infected with Lyme (I didn't know I was infected, otherwise I surely would have done things differently). I've had them all tested and by the Grace of God , they do not have active Lyme. It could definitely be dormant. However, I know what to do now, if it becomes a problem.

In the meantime, keep reading and researching and asking lots of questions. This disease is complicated, but remember that we can get better.

Peace,

Connie

my mom works with pathologists and she literally begged me to let them look at the test results- of course they take one look and say 'no she didn't have lymes'

yeah I can read that too on the paper where it says I needed 5 bands, I thought doctors were supposed to read between the lines! So it's just frustrating.

My joint pain is the hardest thing right now, plus I developed something called Raynaud's Syndrome over the past 6 months. Anyone know if that's connected to lymes, or maybe should I make a separate post about that? I keep getting pinkeye too and it's just strange that I'm the only one in the family to get it. I get everything that comes along actually and I just want to be healthy!

So that's why I want to find a doctor... make that GOOD doctor! I'm so discouraged at this point I am just hoping one exists.

First, let me reassure you that there are doctors who can help you and yes, you can get better . Please pm Jaime and she will help you find an LLMD in your area. LLMD is Lyme Literate Medical Doctor. I had the help of a biological MD and took the alternative route back to health. I can give you his information. Just pm me , if you're interested. I see that you are in WI, my clinic is in the South and may be too far for you to travel. Jaime will help you find one in your area.

The reason you get everything that comes along is because you are probably immunocompromised. The unfortunate fact of this disease is that by the time we are finally diagnosed we are so immunocompromised that we are just a very accomodating host for every pathogen that comes our way .

Raynaud's syndrome is another 'auto immune disorder'. My guess is that it is caused by Lyme and will probably go away when you recover from Lyme.

In the meantime, it might be a good idea to go ahead and start taking some probiotics and a good mulitivitamin and mineral. Lots of people on this site also take garlic. Drink lots of water...if you drink tea, that will count toward your water intake. I drink about 4 cups of green tea per day sweetened with Stevia..a REAL natural sweetener...splenda is artificial,despite what they advertise. Green tea is also a natural antibiotic....not tenough for us, but benenficial just the same.

You are doing the right thing by reading and asking lots of questions.

We lyme patients have to fight for our right to get well. It's not fair, but that's the way it is right now.

Peace,

connie