Wednesday, December 8, 2010

My Lyme Disease is not the IDSA Lyme Disease - sixgoofykids

Recently the Chicago Tribune published a disappointing article titled "Chronic Lyme disease: A dubious diagnosis." From the beginning of the article you can tell that the writer is biased. It is not a balanced piece of investigative reporting at all. Not only that, many facts are entirely wrong, or irrelevant. Here's the article: Tribune article

For example, what relevance does an obscure treatment for ALS using deer antler therapy have to Lyme Disease?

Also, the article brings up the point that the number of reported cases in Illinois shows Lyme Disease is rare in that state. However, the article doesn't mention that the CDC itself says that Lyme Disease is grossly under-reported. The article doesn't mention that many doctors refuse to report the disease. I personally met the CDC criteria for reporting with 8 positive bands on my IgG Western Blot, yet my case was not reported in Ohio. When I called the CDC to tell them my case wasn't reported, they told me that if I wasn't happy with my doctor, to get a new doctor. They had no concern whatsoever that my case wasn't reported.

The article continues its inaccuracy and biased reporting when mentioning the settlement between the CT attorney general Richard Blumenthal and the IDSA. The article mentions that the IDSA determined that the treatment guidelines for Lyme Disease did not need to be rewritten. What the article leaves out is that Richard Blumenthal notified the IDSA in Feb. 2010 that he was "concerned" that they were using "improper voting procedures" in regards to the agreement. For a detailed outline of what really happened go to this link: timeline

The point of my post here is not to refute the article point by point. I hope I have shed some light on the fact that the article is both biased and inaccurate. Not only that, it brings up the ridiculous. Hardly professional journalism.

The point of my post is to tell my Lyme story again, to tell you my personal experience from a different angle than before.

My Lyme story begins back in the early 1970's, but doesn't get really interesting until a new bite in approximately 2003, so I'll start there, though there are some good stories from earlier, like the doctor who told me I drank too much. Huh? Or the doctor who said I still felt bad from the flu I had had 6 months earlier. Huh? Or then there's the one who just considered me to be a hypochondriac even though I always refused pharmaceutical drugs. How exactly can you be a hypochondriac that doesn't want medicine? Or there's the one who said it was a rare but normal reaction to have very severe joint pain after having been treated for bronchitis with antibiotics. Okay, you get the idea.

Basically, I learned to live with it. I got lots of rest. I exercised. I got sunshine and fresh air. I was the health nut of the family and knew all about herbs. I maintained my health with much effort.

In 2003 my husband pulled a tick off me that I had picked up in the woods in Spencer, IN a few hours earlier. I did not have a bullseye rash that I know of. The tick was behind my ear in my hair, so I most likely wouldn't have seen it if I did have one. I did not get the fever or the flu-like symptoms frequently mentioned with contracting Lyme Disease. Lyme wasn't even a thought that crossed my mind.

I don't remember what year each of these symptoms cropped up, but I remember the first one I went to the doctor for was a severe shortness of breath. My sister has asthma, so the docs wanted to rule that out. I went through extensive testing and the doctor finally told me, "You are just hyperventilating."

You've seen in the movies where someone has to breath into a bag? Oh yes, this happened to me several times. I eventually learned how to simulate the bag without having the bag so I could quit embarrassing myself in public. As far as my "regular" breathing, you know how when you breathe in at some point you stop breathing in and start breathing out? Well, for me, I never reached that point where I started breathing out. I just wanted to breathe in. Of course, at some point you can no longer breathe in anymore but have to breathe out, so I would, but I never had what felt like a full breath of air. This was constant.

I also remember my first sweat. It was winter and I was standing there in the kitchen and all of a sudden felt like I was 120 degrees. I took my sweater off, I had a t-shirt on underneath. I opened the window, it was about 10 degrees outside, and sat next to the window. I could not cool off. I also started waking up at night absolutely drenched. When I say drenched, I mean my nightshirt would be completely wet, as would the bed and the pillow. My hair would be completely wet. Again, to compare to the movies, have you ever seen a malaria patient in the movies? That's what I would be like at least one time per night, usually more. My ob/gyn said this was a normal premenopausal symptom. I was 39.

The next symptoms I remember were the GI symptoms. I had a lot of stomach pain after I ate. I dropped from 137 to 123 pounds in three months (I'm 5'8"). I began eating what my friend on Weight Watchers estimated to be at least 3500-4000 calories per day. At this point I started having severe fatigue and weakness. I could hardly hold my head up.

I remember going to the GI doctor and sitting there in the examination room talking to him with my head resting on the wall behind me because I was too weak to hold it up. I told him my GI symptoms - constant watery diarrhea 7-10 times per day, weight loss, muscle weakness, some joint pain, hair loss, but I left out the sweating and breathing difficulties, because, remember, I was told they were normal.

We both thought it might be celiac disease. I had both an upper endoscopy with a biopsy and a colonoscopy. Nothing was wrong except I had a bit of acid reflux. He said, "Maybe it's your gallbladder." Huh? Based on what symptoms? I ran, never went back.

I went gluten-free anyway. I temporarily felt somewhat better on a gluten-free diet. This was the first of my food intolerances. Eventually, I could only eat a few food items without severe, lying-on-the-couch-crying stomach pain. At that later time, I mostly lived on smoothies. I could also eat Vans gluten-free waffles and fried eggs. The only other item I could eat was a fudge I'd make from almond butter, coconut oil, and cocoa nibs.

To summarize my symptoms at this point: air hunger, night sweats, fatigue, muscle aches, joint pain, hair loss, diarrhea, weight loss, food intolerances, stomach pain, and weakness.

I had other symptoms start up at various times that I haven't yet mentioned: heart palpitations, lack of appetite, disorientation, mental confusion, getting lost driving, trouble reading, trouble writing, trouble talking, word recall problems, trouble falling asleep, trouble staying asleep, rashes, bruising, TMJ disorder, ringing in the ears, floaters in eyes, light sensitivity, sound sensitivity, touch sensitivity, mood swings, rage, rib pain, allergies, alcohol intolerance, etc.

Three years after my tick bite I started seeing a holistic MD to see if she could help me. She seemed very promising. She looked over my charts, said she could do thousands of dollars worth of blood tests, but that it would be a waste. She diagnosed me with Somatization Disorder. I said, "So, you're saying this is all in my head?" She said, "No. You've had severe emotional trauma that you haven't let go of and it's causing your physical symptoms."

I started researching on my own. I knew I was not a psychological mess. I discovered Lyme Disease and thought back to that tick bite. It was an "aha" moment for me. I was too sick to call IGeneX Labs, so my husband did and they mailed me a test kit. I took it to my doctor and asked her to run the blood test. She said, "I will run the test because you have Somatization Disorder and I need to get it out of your head that you're sick, so to prove to you that you do not have Lyme Disease, I will run the test."

She ran the test, it came back with 8 positive IgG bands on the Western Blot!!!!! She still stood by her Somatization Disorder diagnosis saying the test shows that at one time I used to have Lyme Disease, but I don't anymore.

January 2007 I had my first appointment with an ILADS ( LLMD (Lyme-literate medical doctor). His nurse spent two hours with me talking about my symptoms and writing them down. He came in and spent 30 minutes with me, at least. He looked over all the information the nurse had gathered, looked over the Western Blot test results, and diagnosed me with Lyme Disease and babesia. He was shocked at how poor the previous doctor's diagnostic skills were.

He treated me for 20 months with antibiotics and antimalarials. By the time I had gotten to him three years after my bite, I was bedridden and barely opened my eyes. My husband took me to New York, and I'm not sure how he did it. He made me open my eyes to look at New York City as we were driving through. That's how bad it had gotten. I could not walk without my husband's help. I cried a lot from the pain. I never wanted to eat.

I became more functional on the antibiotics and antimalarials. I had severe ups and downs, but never as bad as I had been when I was first diagnosed. At first I got worse, then improved from there. Anytime we tried to lower the number of drugs I was on or switch over to herbs, I would backslide significantly.

Eventually, I realized that even with ILADS care, we still don't know how to cure Lyme Disease once it gets chronic, we only know how to manage it. I also realized that there is much more to Lyme Disease than just borrelia. I also had babesia, which I was diagnosed with at the beginning. Later I got a bartonella diagnosis. I also got bacterial dysbiosis, fibromyalgia, and hypothyroid diagnoses.

An interesting thing happened with the bacteria dysbiosis that is worth mentioning. My LLMD put me on Cipro because I tested positive for both klebsiella and citrobacter bacteria overgrowths in the gut. I felt GREAT on the Cipro!! Not only did it help with the gut infections, but it also was hitting my as of yet undiagnosed bartonella. After Cipro, when the diarrhea was still there, the PA wanted me to try herbs rather than stay on the Cipro. She had me on several different herbs. I found an herbal combination for parasites that also hit those particular bacteria, so I took that brand. I SAW a 7 + FOOT long tapeworm that had died in my gut and come out in the toilet. I don't know its full length as I refused to go digging to see what was there, that 7 ft. is just what I saw. I also passed later, on other herbs, over 30 roundworms that were 10-15 inches long!!!! It's distressing to think the GI doctor missed this HUGE problem in my gut!! As soon as the worms passed, I gained 10 pounds and started eating half as much food. My stomach cramps and diarrhea also went away. My hair started growing back. I stopped having weird movement in my abdomen.

After 20 months of the ILADS treatment, I read about an alternative treatment using light and homeopathics in Germany performed by an MD over there. I decided I had nothing to lose because it looked like I was most likely a case that would need maintenance antibiotics until a cure was developed. I also discovered at this point that my Select Comfort bed was full of mold.

We immediately got rid of the bed (eventually got our money back). I started detoxing the mold and felt the worst I had felt in a long time. I was unable to take any medications at all. This went on for a couple weeks and was right before I was due to go to Germany. Between crashing from coming off the medication and from detoxing the mold, I didn't even know if I'd be strong enough to make the trip.

I did muster the strength, but spent the first two days over there in bed except to go to the doctor. I came home three weeks later 50% improved and continued to improve over the next year. I worked on detoxification, rebuilding minerals I was deficient in, killing parasites, rebuilding my gut, and continuing the light treatment at home. Nine months later, I was completely symptom-free. Ends up, it wasn't all in my head. I was sick with bacterial, malarial, and parasitical infections.

Today I am one year and four months healthy. I only take one prescription - Armour Thyroid. I also take iron, minerals, vitamins, and a few herbs - resveratrol, CoQ10, and ALA. A year ago I got certified to teach pilates, and when one of my clients or one of the other teachers finds out that I was very sick just two years ago, they are shocked.

Remember that I mentioned that I had Lyme Disease since the early 1970's? Well, all the little things I lived with for over 30 years - fibromyalgia, fatigue - are now gone, too.

My Lyme Disease was not IDSA Lyme Disease, check it out for yourself - IDSA Lyme Disease. Do YOU think that is what I had? My disease is better described as Multiple Chronic Infectious Disease Syndrome, the term that my LLMD prefers to use.

Like I said at the beginning of this post, the Chicago Tribune article is poorly researched and biased. It is an inaccurate representation of chronic Lyme patients and the doctors who treat us.


Adi said...

Great response to Forbes! I heeded your call for Lymies with blogs to write a response to the Tribune article. Here it is!

sixgoofykids said...

Nice blog post, Adi!!

Anonymous said...

Just wanted to finally comment on your story and say how well you put this into words. I'd forgotten so many of my symptoms, and reading your story was like going back in time to how it felt to be that sick. I'm so glad you're better and that we had LLMDs to treat us!

noireparis said...


Thanks for sharing your experience. What herbs did you take to relieve your GI symptoms and, ultimately, purge the worms? I have similar GI symptoms. I've had a colonoscopy, endoscopy and a barium enema and the doctors have no answers for me. I have to find my own solution. Thanks.


sixgoofykids said...

I took Humaworm. I also took at various times - oregano oil, triphala, haritaki, Dr. Natura cleanse. Parastroy looks good, but I just heard of it recently so I haven't used it.

I also worked hard on building up the good bacteria with VSL#3, Theralac, and Ultra Flora. Also homemade sauerkraut, kefir, and kombucha.