By Shari Sachs
Everyone who has been told they have Lyme disease and even those who don’t but think they might has a story. And opinions.
Here are mine.
First the “back” story —
In 2009, I was a 51 year old successful HR executive working for a Fortune 50 company. I was there close to twenty years and working for close to 30. I was in charge of HR for a 4B division of the company and 10,000 employees. I had committed my whole life to achieving this status., working really hard, juggling parenting and single parenting of teenage children while working long and hard hours.
I was making really good money, had a pension awaiting me just a few years away, and many other great benefits. I was well respected throughout the company and still growing. I was at the pinnacle of my career.
I had been through about as bitter a divorce and co-parenting arrangement as one could go through and a custody battle ten years prior, married (barely) and divorced a year later a second time again, and the raising of two daughters to their college years through the post marital strife plus the job demands..
I thought I was set. A comfortable retirement in my early 50s seemed to be just on the horizon.
Little did I know my world was about to collapse.
A big reorg in 2009. A new boss, CEO and bosses boss. A lot of internal conflict and “sucking up” and vying for approval ensued but looking back I had been doing that for a lot of my life. Afraid to be really me.
A year later I had what I now believe was a breakdown. I was 52.
It started with escalating anxiety. Then losing words and memory, finding it difficult to articulate. Hot flashes, sweats when I would try to talk to people. Then panic attacks sometimes when I was in front of a room of executives giving a briefing.
“Menopause” I thought. Or early Alzheimer’s. What else could it be?
My hearing did something funny one day. And then kept happening on other days too. Its like there was a plug in it. When I spoke I heard myself in a tunnel. It started when I was at a leadership conference and had to get up and speak in front of 150 people. Soon after my new boss gave me some “feedback” that at the conference I was “disoriented”
Yea – duh… “I told you that day, I couldn’t HEAR”.
“Your colleagues are concerned about you” she said. On some level I knew she wanted me out – on another … I knew something really scary that I didn’t understand was happening inside of me.
A few months later my dog died. He was killed, accidentally run over by a friend’s husband who was watching him while I was on a business trip. He was four and my baby. I got home from the trip, looked at my “blackberry” with its 200 messages a day and its insistence of having me on alert 24/7 and said “I’m done.”
Several months later after I had been on a short term disability and tried to return, I was.
The “Lyme” diagnosis
About a year after I stopped working, just about the time I thought I was ready to go back, I developed a number of other symptoms. My hearing in my other ear was doing weird stuff too. It made it sound like people were talking underwater. This is when I really thought I was losing my mind. And when this happened I kinda did.
Then after a cruise I had “vestibular” issues. I couldn’t get off the boat so to speak.
Brain scans, VNG (testing inner ear balance) and other tests later I was told I had inner ear nerve damage but not sure about the scary, martian like hearing. The drs just looked at me like “uh huh- she’s crazy”…. And of course why the damage – who knows. Maybe a virus. Or ear infections which I NEVER had…
About the time symptoms started abating I started to have burning skin sensations. Again these symptoms were so disturbing and unusual – I didn’t understand then what I know now – that they were sending my anxiety and panic through the roof!
I was really, really scared.
More tests, neurological, rheumatological etc. Everything was negative including two “Lyme” tests.
Then a week after the last negative Lyme I had it run again and the it was borderline so they actually ran the Western blot and it was positive for antibodies in several “bands.”
The Lyme “Vortex”
I call it this because I think when you get “diagnosed” with Lyme you get pulled into a whirlwind of information, fear, and confusion that feels like you’re Alice slipping down the rabbit hole.
I was a “believer” at first too. I thought the infectious disease guys and the rest of the world didn’t know anything when it came to Lyme now that I was learning about how misunderstood it was. I thought we were unlucky victims. I wracked my brain about when I might got “bitten” and how long ago??? I thought it was all because of a tick bite or those pesky mosquitoes that had attacked me in Florida a year or two ago. I took doxycycline ( which by the way is kind of useless unless you are taking it right after you see a bulls eye rash I think but who really knows???) I went to two LLMDS who charged me 500 dollars and 750 dollars respectively just for my first visits.
I started to learn the Lyme vernacular – words like “herxing” – the extreme die off reaction that happens as you kill bugs- and “co-infections” like bartonella, babesia, ehrlichiosis that were equally if not more daunting than the “borrellia” bacteria of Lyme itself. I thought no one else understood except the “Lymies” who seemed to wear that label like a badge of honor.
I went to a dr that was supposed to “brilliant”. I spent close to ten thousand dollars on “testing” alone. He took about 50 viles of blood. I found out I had babesia, major mercury levels, an MTHFR double bind gene mutation (another new vernacular) and food sensitivities to EVERY food except papaya. Also some other things that I cant remember.
What was I supposed to do with all this? I was completely overwhelmed and felt myself spiraling even further downward.
I was given hundreds and hundreds of dollars a month of supplements to start. I saw my “brilliant” dr. once a month at 300 dollars a pop. He was condescending and just wanted to keep doing tests. Oh he was a researcher too by the way. I was unable to work. I was spending 800 a month on insurance that didn’t cover much of it.
My comfy retirement that I had worked a lifetime for was down the tubes.
I became lost, hopeless, depressed and really really SCARED. I began having suicidal ideations, but honestly I think it was more from the fear of what I was told about Lyme disease than from whatever disease I had itself!
I was told long term antibiotics was necessary at some point. And that it would be a “multi year process”. And a very expensive one too.
I researched and researched and read people’s stories. I wanted to get to the bottom of this thing called Lyme. And what I was finding was that some people got better, but most were sick with Lyme for a really long time and not better. Many others got better while on antibiotics for a year or more but then “relapsed” when they got off. Many, many were spending and losing their life savings on this unsure and prolonged treatment. Or money they didn’t really have.
Something was just not adding up to me. Now I will readily admit my symptoms were more neurological so I was not bedridden and maybe if I was I would have questioned less and blindly followed the rhetoric more. But I didn’t want to “herx” (I was told it was terrifying), I didn’t want to put strong antibiotics in my body for one or more years; and I didn’t want to spend 50,000 on treatment or even the 1,000 a month I was spending for non-treatment. Especially when I had no income.
So I questioned. I had been venturing down a spiritual path since before I stopped working and it caused me think in alternative ways. I started thinking that this could be an “energetic” dis-ease more than a physical one. Not to say its not in the body but the “cause” of it, the way out could be more energetic. Maybe it was just my fear of the treatment. Maybe it’s a form of denial. I don’t know. I just came to believe it. I thought –“spirochetes are parasites, the lowest form of vibration; all I need to do is raise my vibration (and my immunity) higher than theirs.”
Right after that insight I met my energy coach. I also started drinking green smoothies, and eating whole foods, cut out gluten, dairy, sugar and wine. (wine for a while – its my downfall…lol). I ventured more into the spiritual path.
I said no to antibiotics.
And I started to feel better. For awhile. Until I started drinking wine again, eating some not so great foods, not doing the energy work and mostly not being true to myself again. I made some decisions where I gave myself up again trying to make it easy for others. To my own demise.
Then I got Interstitial Cystitis (IC)
Back to the drawing board.
What I believe now
Is IC and Lyme related?
Rather than answer this I have this suggestion. If you want. I found a book called the Medical Medium by Anthony William. He has been doing a lot of marketing on facebook so you may have already heard about him.
I realize many people will think it’s woo woo because he is not a doctor. He is a medium who talks to “Spirit.” Before you judge, or if you are to judge just read his story first then decide for yourself. He explains it all better than I can what I believe to a large extent.
He validated what I was starting to believe before read his book. That Lyme is not caused by a tick bite. I mean, come on – to me – it just doesn’t make sense. He says that all these “mystery illnesses” like MS, RA, thyroid disease etc are generally from the same cause and that is dormant viruses that get activated by triggers, low immunity and low vibration – predominately Epsteins Barr, or some variation of the herpes family including shingles (non-rashing).
At least that is what “Spirit” told him. I have to say he is pretty knowledgeable about all these dis-eases. He recommends food and supplement plans to defeat the viruses. He says ticks are down at the bottom of the list of “triggers” to activate symptoms of these viruses.
About Lyme – he thinks its become a “trap”. So do I. Please please – I am not saying that people (including myself) are really NOT sick. But I do think there’s a new flavor of kool aid many of us are drinking. LLMDS are getting rich off of desperate people. Are there well meaning doctors who care? Of course. Nevertheless is this REALLY the way to health? Pouring heavy antibiotics into us that may or may not get us better?
Read his chapter on it – just see what you think. You don’t have to believe any of it
Oh and by the way I do not know anyone who has been tested at Igenex for Lyme that has gotten a negative result. I also wonder how many people who are NOT sick would test positive for the antibodies if we actually tested them. That’s data we do not have.
The tests do not tell you that you have a disease- they only tell you that you have antibodies – and maybe they even can cross react with viruses like EBV???
I don’t know. But I do question. And I do know you can have this bacteria in your body plus a lot of other bacteria and not be “sick”.
I also believe that certain kinds of people are more susceptible to developing these autoimmune diseases. And that’s the “energy” part. I have read a number of books and studies correlating people who tend to be: “people pleasers”, enablers, taking on more responsibility than is theirs, high need to control, hard on themselves, and just generally absorbing a lot of other people’s energy – that have a higher rate of autoimmunity than the general population. Many of our emotions lower our immunity and then we become overwhelmed by little critters like those in the Lyme and related bacterias.
I have several friends that eat and drink whatever they like. But they don’t stress and they let things roll of their shoulders. They don’t obsess over what other people think. They don’t overanalyze. And they are happy and well and enjoy life even not taking great care of their bodies.
My guess is if they ever got “tested” for Lyme disease at Igenex it would come back positive too. Some of them have been bit by ticks. Oh and by the way after you take all those strong, toxic antibiotics what if you get “bit” again. Even mosquitoes carry some of this stuff.
I think working on processing and releasing our unprocessed and unreleased emotions and traumas does more towards real healing than anything we can do for our bodies. Yes we need to car for our body- that’s’ part of the self-love/self care, high vibration living that keeps us well, energetically.
Everyone I know who has “healed for real”, who considers themselves “cured” from an “incurable’ dis-ease (not I say dis-ease, not disease) has done the energetic clearing. It’s a lot of work but it changes you from the inside out. Life can be lived joyously.
I discovered a wonderful book to assist with your own energetic healing —
She explains much better than I and very effectively what energy healing is, why we get and stay sick and step by step explanations of techniques to do the releasing work.
What do I believe? I believe that the only way healing can take place is through mind/body and spirit, all of them. And personally for me, spirit is the most critical. I believe the answers are inside of me , with what my body is trying to tell me and with God and that is the first source to follow.
I don’t let the fear of tick bites drive my life anymore. Even though I was told I had Lyme AND IC. Its probably all the mercury anyway.
I just try to raise my immunity, correct imbalances, pray and talk to God, meditate, walk, love and trust. And I don’t always do that well at all of it. I still like a glass of wine. And binge on potato chips. And get angry. And say the wrong things. After all, I’m one of those “types” of over obsessing, overanalyzing people that gets these kinds of diseases. Lol
Should I treat the Lyme or treat the IC? I don’t know. Somewhere along the way I decided to “treat” my soul instead.
In conclusion, I never, ever, EVER want to tell anyone what they should do. I do not have a medical background. I’m an avid researcher and pretty good at seeing patterns and drawing conclusions. And, I have just learned to trust my intuition backed by a bit of information. I am just reporting what felt right for ME. . I just offer this to you as a point of view.