Duck, Duck, Doc…#1 The General Practitioner

*I’m now in year four of Chronic Lyme disease treatment. I wanted to share my journey in trying to get and find a correct diagnosis (not my treatment pilgrimage mind you). Please know that my experience has actually been much easier than many other Lyme patients. Some visit 20, 30, 40+ doctors trying to find a root cause for their symptoms.

I searched for answers for my illnesses from 2009 – 2013. I had many doctor visits with many different types of doctors, some simultaneously. However, I am trying to do a separate post for each doctor. If only all 7- 8 doctors would have paid attention to one another and to me, maybe I could have started on my healing journey faster, but that’s probably not realistic at all, especially in the Western Medicine sphere.*

#1 – The General Practitioner (my doctor since 2006):

The earliest I can remember having symptoms that then continued on for years was in the fall of 2009. I was starting to have other than normal tiredness and that fall, I got the “flu” and I was sick for several days. I remember sitting out on the deck in the sun hoping I would feel better soon. I’m not sure why I remember that moment but I do. I think I realized in the back of my mind that something just wasn’t quite “right.” I was wishing I could stay out of work just one more day to rest. 

The flu like symptoms continued off and on as did the tiredness. When I went to my family doctor, a family practitioner, she of course blew it all of to the daily grind. To working a lot. I didn’t have the flu anymore and nothing else was wrong (supposedly). She told me that my thyroid was borderline but did not send me to an endocrinologist. “We’ll just keep an eye on it,” she said. I got better so I didn’t worry.

But a few months later, I was back to the tired. I went ahead and decided to go to an endo doctor. After blood work, I was diagnosed with Hashimoto’s disease. My thyroid wasn’t working properly. My GP said “great” and we moved on. I felt a little better once my thryoid meds were adjusted. I also thought “great” and moved on. On the summer of 2010 I had a weird rash on my legs. My GP told me to get someone else to do the lawnwork. I think she gave me some cream and it cleared up. No biggie.

But then in the fall of 2010, the tired was back. I felt sluggish. At this point, I was diagnosed with reactivated Mono. I tried to ask questions like “why” and “how” since the blood work showed I had in fact had Mono before (I had NO idea that I had Mono when I was 25 (in 1995) because it was in combination with a horrible strep infection so the Mono was missed and never diagnosed!). My GP said to stay hydrated and rest. I took a few days off of work which didn’t help, and then I got back to it. It took a few months to feel better but I did eventually.

Hanging

After that, the cycles continued. Between 2010 and March 2013 (when I was finally diagnosed with Lyme disease – CDC+), I had “reactivated Mono” about 6 times. My GP was pretty nonchalant about it. But I wasn’t. My research revealed that usually a person has Mono once in his lifetime and then builds a resistance to it. It supposedly doesn’t reactivate!  Everything I read said that reactivation of Mono (Epstein Barr virus) “rarely” and “hardly ever” happens. And with every cycle the symptoms seemed to last longer. Chronic Fatigue was starting to be thrown around but the GP wasn’t willing to diagnose me with it. On the flip side, according to my endo, my thyroid was working nicely now on the medication prescribed. So what could be going on??

By the fall of 2012, I was exhausted. But I was getting married in November, I was chair of a department of about 40 people, I was sponsoring clubs, etc. I just figured it was all par for the course. Oh, and I trusted my two doctors, the GP and the endo. Yet, on the 6th diagnosis of “reactiviated mono” in October of 2012 and just a few weeks before the wedding, I’d had enough. I pushed my GP on the WHY was I continuing to experience Mono??? I wondered also WHY she wasn’t more concerned? At this point, I figured my immune system was not doing a good job, but WHY not?

She finally and not very willingly, referred me to an Infectious Disease doctor. My appointment was not until January 2013. But that’s another post, my friends!

Conclusion: my first doctor, my GP, did not help me get to the root of my issues.

Coming soon – Duck, Duck, Doc…#2 The Endocrinologist. Stay tuned!

I hope your weekend was a calm and joyful one. -B

Advertisements

The Lyme Long Con Continues

I am sure everybody hits points in their lives when they sit back for a moment and reflect on where they are, what their plans are for the future, how will they get things accomplished, etc. I know I used to do this periodically. Reflection has always been a part of my life. Pre-Lyme disease, I was always positive that the future would always be filled with unending growth and opportunities, both personal and otherwise.

Now? I’m in the midst of trying to treat a real illness, one that has been in my body silently and insidiously taking over. Lyme bacteria – a corkscrew-shaped bacterium called Borrelia burgdorferi – has played the Lyme Long Con with me and hundreds, I mean THOUSANDS, of others. For years and years it has slowly but surely, patiently, illness after illness, entered almost every single system in my body.

But the CDC and IDSA  (Infectious Diseases Society of America) panel are also complicit in this LONG CON, the Lyme Lie, the Lyme denial, against all of us. For years, the CDC has claimed that Lyme disease is difficult to contract and easy to treat. Yet, in the past 40+ years, science has confirmed that there are 300+ strains of Borrelia bacteria  with Lyme being merely only one of these 100s of strains that are all transmitted by ticks, fleas, and mosquitos worldwide.

This is so ludicris at this point that I honestly don’t understand how the CDC can still be promoting this misinformation. Just a few years ago, the CDC changed its number of newly contracted Lyme infections from 30,000 to 300,000 yearly. Yes, from 30,000 to 300,000!! A YEAR. And many believe that this number is much lower than actual cases each year. 300,000 PER YEAR. Let that sink in. Just to give us some perspective, there are about 50,000 new HIV cases and 200,000 breast cancer cases each year in the US. Yet, almost no money is going into researching Borrelia complex diseases.

I want to scream that BORRELIA INFECTIONs are real. LYME IS REAL. CHRONIC LYME IS REAL. CHRONIC LYME IS HAPPENING TO thousands of PEOPLE, not only in this country but globally as well!  As patients, we need to have access to treatment, individualized treatment, treatment that lasts more than a mere 2-4 weeks of antibiotics. You may say, but what the heck does this have to do with your first paragraph. Well, everything, my friends.

Lyme has stopped me, as well as thousands of others, in my path. It has stalled me for awhile, off and on for years, and I unknowingly placed faith in the CDC, the  American healthcare system, in my doctors, faith in health insurance companies. I placed my FAITH in these entities sure that they would find out why I was dealing with strange health issues off and on over the span of 3-4 years. They didn’t. 

Then, I put faith into the fact that once diagnosed, I would be treated, and I would have a recovery plan. Alas, getting a Lyme diagnosis almost means nothing. The USA has done absolutely nothing to improve research, diagnosis, nor treatment since the disease was discovered (it’s been around for thousands of years) in 1975. Yes, take that in. 1975. We know almost nothing more now than we did then. In the meantime, THOUSANDS of people have gone undiagnosed and untreated. Thousands have been misdiagnosed with MS, Lupus, and ALS, along with other diseases and gone untreated for Borrleia infections. Why??? The treatment for Lyme and other Borrelia infections has not and cannot be easily monetized – YET. So we wait. And 300,000+ and more become infected every single year.

So here I am. Halted. Stopped for much longer than anticipated. Perhaps, stopped here permanently. I know, I know. I need to be positive. I need to buck up. I need to stop focusing on my illness. Most days, I can manage this. But this past month, not so much. Sometimes, we just need to GRIEVE a loss.Sometimes, we need to be ANGRY. Sometimes, we just need to BE.

If you would like more information about Borrelia infections (this includes Lyme bacteria infections) then please watch Under Our Skin. It provides some basic information regarding Lyme disease as well as information about how the CDC and the IDSA are working in tendem, not only to discredit Lyme doctors and patients daily, but on a much larger scale, how these two organizations are undermining the most dangerous health crisis of our time.

 

 

Please be careful. LYME IS EVERYWHERE – WORLDWIDE. Take care, my friends – B

 

 

 

CDC Global Credibility in Jeopardy over Lyme Policy | Jenna Luche-Thayer | LinkedIn

This is an excellent in-depth article about our healthcare crisis here in the USA in regards to Lyme disease and co-infections. Please take a few minutes to read and process the continued negative results of the CDC not addressing this EPIDEMIC.

image

https://www.linkedin.com/pulse/cdc-global-credibility-jeopardy-over-lyme-policy-jenna-luche-thayer?trk=hb_ntf_MEGAPHONE_ARTICLE_POST<!–