Our Health Sector is Grossly Unprepared to Diagnose Your Lyme Disease Symptoms, so Imagine how bad it is for Dogs…
I know, this is a dog website, but this article is about humans. It comes as a result of my friends battle to diagnose her Lyme disease symptoms, all of which I experienced first hand. It has been shared many times, largely as it describes a common and highly dangerous misdiagnosis that nearly sent us up the wrong path, and set us back months. It highlights how grossly unprepared our health system is to diagnose and indeed treat this disease I hope it serves as a warning to others who might find themselves in the same situation.
A Brief Account of my Best (Human) Friend’s Fight to Diagnose her Lyme Disease Symptoms…
One day a friend of mine mentioned to me that they weren’t feeling quite right. They had an annoying tingling feeling in their toes. The next day it had spread to their hand. A few days later they were feeling achy, almost like they were getting the flu, then a couple of weeks later a very strange striped, rectangular rash and a metallic taste like sucking pennies that wouldn’t go away. Doctors were visited, various diagnoses were given. Nothing helped.
As time went on the symptoms appeared to vary and move around a lot. Then the numbness started. A numb-like feeling on the foot. On the hand. Across their jaw. This was an escalation and I think we all agree would make for a far more worrying symptom, bringing forth images of some serious underlying neurological condition. Quickly the person started experiencing a feeling as if their limbs were falling asleep (but never actually did), particularly at night time.
All this time my friend was visiting doctors trying to get a diagnosis and nothing was coming forth. Nobody could put it all together. Soon they found themselves sitting in front of a neurologist. Physical tests were done. Bloods were taken. MRIs were conducted. Little patches of white inflammation were found in the brain, and where these patches occurred could possibly indicate early signs of Multiple Sclerosis (MS).
Absolute shock. It couldn’t be. MS is a degenerative disease for the large part. It’s like little fires in your brain, fires that leave something akin to a singe (sclerosis being latin for scar) on your brain tissue. Over time these little scars build and disruption to normal neurological processes ensue. As scars build, so does the disruption.
Denial sets in. They were too young, surely. Next a lumbar puncture. “If we find this protein in your spinal fluid then…”.
The little protein was found.
With your results, you are passed to another neurologist, one specialising in treating MS. Without saying it, the young doctor prepares you. What you have could be something like a precursor to MS but might not be (no two cases are the same). But if it does develop then advances have been made over the last ten years and there are really good treatments available today.
The fact remains that MS is receiving a lot of money of late as it’s what’s called a lifetime disease meaning it appeals to drug companies. New discoveries being made in the field in ten years, who knows…
So sit back and wait but don’t let it bother you. Get on with your life.
But maybe it could be something else, my friend asked. What about the strange rash, the metallic taste, where I was when all this started? None of those fit in with an MS diagnosis.
Absolutely nothing was offered.
Surely there’s something we can do if it is MS, some alternative therapy to slow it’s progress? What environmental factors brought this on?! Change of lifestyle perhaps? What about diet? I heard getting off red meat is vital. Cod liver oil too. Numerous books have been written by very serious doctors who are getting some astounding results using nutrition alone. If you could just look at the results of these studies in MS patients…
“Well yes, you can try all those things…”.
Zero interest. You might as well have said you were going to do ten laps around an oak tree each day. This response is nothing new to those of us who chose to do something as ridiculous as feed fresh food to their dogs.
So you are left to your own devices. I imagine that was a terribly dark time for my friend.
But the story has a happy ending. By great fortune, I bumped into a few people with Lyme disease. A little research was done. The immensely supportive TickTalk Ireland was found. Lyme disease became an option. The symptoms did, after all, begin after a walk around a farm. A bit of hope.
While you don’t want Lyme disease, if you get a timely diagnosis it can be treated.
My friend then found themselves at one of Ireland’s top microbiologists. More bloods were taken and various pathogens were tested for. Results came back. A few pathogens in the blood were found, nothing too alarming but given the brain scan, the symptoms and now this bacteria, they have prescribed a long course of antibiotics.
But what about Lyme disease? Did they find that? No, the test was negative.
My friend was partly prepared for this information. The problem is the test available to Irish doctors has been documented to be quite ineffective.
Once again this doctor had no interest in this information. Once again my friend was on their own.
On advice from folk that went through a similar rigmarole, they ended up in Germany getting tested by the world leaders in Lyme disease and tick bourse parasites Armin Labs. The very finely tuned tests identified Borrelia burgdorferi bacteria and some co-infections. A.k.a. Lyme disease. Bingo.
Armed with an accurate diagnosis, antibiotics were tweaked and they are now on the road to recovery, well over a year after their ordeal started.
Other Lyme Disease Sufferers are not so Lucky…
A quick review online tells us that my friend was lucky. That their symptoms were mild. Many others are not so lucky, experiencing a high degree of pain in their joints, nerves and bones, from the very start. The treatment can be laborious and highly expensive due to the sheer amount of treatments and medications, the delay as you go down dead ends and the travel to better labs, as Sarah’s story below really demonstrates.
How Much Lyme Disease is There in Ireland and the U.K.?
According to Public Health England, it’s estimated that there are 2,000 to 3,000 new confirmed cases of Lyme disease in England and Wales each year. We have no figures for Ireland as doctors are not required to report cases.
However, it is universally accepted that this figure is likely a gross under-diagnosis of the true incidence, largely due to the tests used which simply are not accurate enough for this insidious little disease that hides away in your body. Furthermore, these tests rely on finding antibodies to the baddie, not the baddie itself, but it takes weeks for antibodies to be built up and chronic Lyme sufferers may return a false negative result due to the depleted immune system not being able to produce antibodies in sufficient numbers for the test to show positive.
Lyme Disease Symptoms in Humans…
The large bulls-eye-shaped rash that follows a day or two after infection is often focused on by doctors treating patients with possible Lyme disease but remember, this does not always occur (sometimes it can even be strangely rectangular, as in the case of friend). 50% of patients with Lyme disease actually don’t even remember being bitten by a tick or having any rash at all.
I remember something my friend said to me, that another symptom of Lyme disease was the feeling that you were going slowly mad. This fact can be actually encouraged by medical practitioners. My friends neurologist said at one point:
with cases like yours, 1/3 have MS, 1/3 are idiopathic (they don’t know what it is) and 1/3 is in the patients head…
Other Lyme Disease symptoms include
Achy, stiff, or swollen joints
Headaches, dizziness, fever
Night sweats and sleep disturbances.
Sensitivity to light and vision changes
Tingles in hands or feet, limbs “falling asleep”
An array of tactile and sensory neurological problems
So yes, it’s complicated. And our doctors are not prepared. Your preventative measures are your first and only line of defence.
The Best Advice for Lyme Disease in Humans…
1. Prevention: How To Avoid Tick Bites…
Ticks don’t jump or fly, they wait on grass stems for people or animals to brush by, then they hop on. They’re essentially little spiders and their aim is to drink blood. That would be fine if they didn’t potentially house a few pathogens around their mouth-parts, transmitting baddies much like a mosquito.
The advice is always to cover your arms and legs when out walking in long grass. Wear long-sleeved tops and trousers. And always dust yourself off before getting into your car.
They can be found in woods, urban parks, heathland and fields. They can also be found in gardens. Carriers include deer, badgers, any warm-blooded animals, and yes, dogs.
2. If Bitten: How to Remove and Keep the Tick…
Please check out our comprehensive article on how to safely remove ticks. While the article is in dogs, the very same principles apply to you. We keep the tick because, should you have issues down the road, you can get them tested.
3. If you Suspect Lyme Disease Symptoms, Don’t Wait, Seek out Armin Labs…
If you suffer any of the above symptoms, a mysterious sickness that you lack a diagnosis for, ME type symptoms, chronic fatigue, chronic pain, anything undiagnosed to be honest, then it’s strongly recommended you go speak to your GP regarding a proper Lyme disease investigation via the German lab Armin. It will cost you €300 and can be done from your local clinic. As above, your local GP is today unlikely to be fully versed in what’s going on and what to do. The disease can be missed when the wrong tests are employed. Go straight to the experts, you will save yourself a lot of heartache (and cash, as if that was an issue right now).
4. Armed With a Diagnosis, you Will be Put on Strong Antibiotics, but There are Natural Essential Oils Absolutely PROVEN to be as, and Often More Effective, Which can be Taken in Conjunction With Your Treatment to Ensure Success…
You can take what you like from the info below but as an academic I am guided by the literature and the two studies below showing the effiacy of some natural treatments of Lyme disease symptoms blew me away. I’m not selling anything here. You can take what you like from the information. Certainly of this was ever discussed with us but, as some sufferers are likely to find out, the antibiotics don’t always sort out the issue. At least for them, this information should be absolutely considered.
Researchers evaluated 34 essential oils against Lyme disease organisms. They did it in-vitro (in a laboratory), not in test cases. They began with a culture of the bug in question that mimics the persistent phase of the organism, the part that is hard to shift, the part that is most stubborn to clear. Here’s what they found…
We were able to identify 23 essential oils at 1% concentration that are more active than the control persister drug Daptomycin … three of which, oregano, clove bud, and cinnamon bark, highlighted themselves as having a remarkable activity even at a very low concentration of 0.125%.
Among them, oregano and cinnamon bark essential oils demonstrated the best activity as shown by complete eradication of stationary phase B. burgdorferi even at 0.05% concentration.”
Just to highlight for you, certain essential oils, in particular, Oregano oil, Cinnamon bark oil and Clove oil, oils that hundreds of studies indicate are excellent anti-bacterial and anti-virals, worked better than one of the strongest antibiotics they have even at very low concentrations.
This is pretty staggering info, from researchers with no skin in the game.
The top three hits, oregano, cinnamon bark, and clove bud completely eradicated all viable cells without any regrowth in subculture in fresh medium.
Enthused by this finding, they conducted a second study of natural treatments for Lyme disease and found 10 more essential oils with highly potent anti-Lyme activity. This time they note that 16 of the essential oils tested worked better than three of the strongest antibiotics used against chronic Lyme disease.
You can discuss these findings with your doctor. If they show no interest, consider discussing the results with your local, qualified herbalist who will guide you as to dosage and potential drug clashes, if there are any.
Hope this article helps some of you. For more information on Lyme disease please visit TickTalk Ireland’s website.
More information here on Lyme Disease in Dogs.