I frequently get questions on the varied and bizarre symptoms with MSIDS (or Lyme with friends). One of the most challenging thing with this illness is understanding the manifestations and to know you aren’t crazy! I remember in the early days searching tirelessly to identify with others undergoing the same madness. In my quest to get answers I stumbled upon a very informative and helpful website.
The following is used with permission by Chris, the author of http://www.tiredoflyme.com. “Tired of Lyme believes the most important and critical factor a person with Lyme Disease needs in order to heal is education. Never stop asking questions and never stop learning about the infection. Tired of Lyme will continue to play its part to the best of its ability in the lives of those who request and demand it.”
I couldn’t agree more. Thank you Chris, for your tireless efforts, and for making your lemons into lemonade and then for passing it around and sharing it with all of us.
“When it comes to infiltrating and disrupting the physical functions of the human body by Lyme Disease, the eyes are no exception. The spirochetes of Lyme Disease do congregate in specific parts of the eyes, and when they do, inflammation occurs. An individual’s eye and vision symptoms will depend on what physical part or parts of the eyes the spirochetes invade and gather in. Not only is the function of the eye (i.e., the vision) distorted, but the physical eye itself manifests unnerving symptoms. It’s important to remember that because the human eye contains many complex components, a person may be subjected to not just one or two symptoms of the eye or vision, but many.
The eye is probably the most relied upon sense of the human body. Its function allows us to perceive our physical world in great detail without any true effort on our part.
Those with Lyme experience first hand the bizarre visual disturbances Borrelia has on this truly remarkable piece of evolution. The good news is that as treatment progresses, the bizarre eyes symptoms caused by the bacteria’s presence will exponentially get better.
Almost everyone that has Lyme Disease has experienced a light sensitivity at one point or another. The symptom speaks for itself in that a person can’t visually tolerate bright lights. Even when driving during a cloudy day, a person may feel the need to wear sunglasses.
Driving at night can be harsh as even if the opposing car doesn’t have their high beams on, the direction of their lights shine directly in the line of a person’s sight.
Cloudy or foggy vision
This symptom is quite common. A person with Lyme will feel as if they’re visually “in a cloud” or a fog. The symptom itself manifests after sleeping or during a period of herxing. They may find as they try to focus on an object in the distance, it will appear blurry or difficult to interpret, even though the object could once be perceived clearly.
Height or depth instability
This is an unusual symptom that only can be experienced at a place of high altitude. When in a high-rise building or even just a few hundred feet from the ground, looking down creates a feel of “instability”. The ground appears to move up and down but in reality there seems to be a flaw in the eye’s ability to properly focus. The eyes can’t confidently relay to the brain how far up a person is from the ground, thus creating an unstable feeling.
This symptom you’d expect from an advanced movie editing software. It’s not too common but it does happen. As a person focuses on a specific object, there appears to be a delay or double image of the object when it moves. The eye perceives the object’s original and new location at the same time, creating a ghost-like perception of the object.
Moving Object illusion
Here is a symptom that occurs in those without Lyme Disease but is easily corrected by an ability otherwise handicapped in the vision of those with Lyme. In being the right distance from a moving object, the brain can’t determine whether it [the brain] or the object it’s focusing on is moving.
The brain normally picks up the stationary objects surrounding the moving object to determine that the object is in fact moving, and not itself. In those with Lyme, even with stationary objects in the same vision as a moving object, the brain has a hard time determining whether it [the brain] or the object is moving.
This is by far the most common visual disturbance of the eye. A person with Lyme Disease may see in their vision dots, lines, or streaks that range in colors from blue, green, yellow, or red.
The symptom itself seems to be most apparent after the eye is exposed to bright light, even if for just a split second. After turning away from an object of focus in bright light, a colored silhouette of that object may appear in a person’s vision.
This symptom appears to have been taken out of a horror movie. As a person turns their head, a shadow or phantom image appears for a split second in the corner of their eye. They turn back to where the shadow was perceived, only to find it was an illusion. The shadow itself, as real in the flesh as it appeared, was generated by the eye and doesn’t exist outside of it. The eye fooled itself.
Reading a paragraph consisting of more than 2 or 3 lines, or closely compacted sentences, is incredibly difficult for some with Lyme Disease. When reading, the eyes focus on the specific text the brain will interpret for quick comprehension. Some people with Lyme that attempt to read a large body of text will find that their eyes simply can’t focus on the specific text in their vision. When reading, it almost appears as if every other word besides the focused one is attempting to enter the focal point of the eye, creating a textual bombardment.
Reading slow gives the eyes a chance to focus appropriately on the desired text, but even still, a person may feel the large body of text is just simply too overwhelming for current focal capabilities. The inability to comprehend text itself is no visual symptom, but it goes hand in hand with this one.”
For more information on how MSIDS affects the eye go to: https://ticktalkireland.wordpress.com/lyme-links/lyme-eye-problems/. There are numerous studies and more information on how the coinfections are involved.
“Hearing is probably the second most relied upon sense of the human body for interacting with the world. It’s the primary sense that has evolved to not only better serve our ability to communicate with others, but to also provide a defense mechanism against possible threats.
Much like the eyes, the ears can also become directly affected by Lyme Disease and its coinfections, specifically Bartonella. Some hearing symptoms are unique to the circumstances of an individual’s infection, and some symptoms are quite common among those infected with Lyme or other possible coinfections. Some symptoms become exacerbated during a herxheimer reaction, while others may manifest but once during the whole ordeal. As the bacteria disturbs the nerves within the ear, inflammation will commence, which many times happens to be the sole cause for many hearing problems, and not always the bacteria itself.
An interesting, but also incredibly unnerving hearing symptom of Lyme Disease. The voices from others, as well as the voice of the person who has Lyme Disease, may sound like a robot’s voice. The words another person utters are distorted within the ear, and the person with Lyme perceives them as almost robotic-like. The words appear to the ears as broken.
More commonly referred to and known as “ringing in the ear”, it’s probably one of the most common hearing symptoms of Lyme Disease. If you’ve ever been exposed to unreasonably loud music, or any sound that becomes overwhelming to the ear, you more than likely experienced a ringing in the ear depending on how loud the sound was. In the beginning stages of Lyme Disease, the ringing is nearly constant and never seems to fade. However, as treatment begins and progresses, the ringing in the ear become less noticeable and frequent. The ringing itself may even be exclusive to just one ear, as opposed to both, reflecting the course and location of the infection. Loud noises can definitely enhance the ringing and make it more prominent.
The aliens are calling
This symptoms appears to be just an extended version of tinnitus. When this symptom occurs, it’s completely by random chance, with no loud sounds being the culprit or cause. The symptom has two parts, but lasts for just a few minutes. When the symptom begins, a person will feel as if a hand is slowly covering their ear. As this strange symptom progresses, a ringing in the ear become louder and more prominent. The symptom itself is best described as “The aliens are calling” ,or “I can hear their radio waves”, because the person humorously believes they’ve become more susceptible to what would be considered by humans as alien communication transmissions.
Just as with light sensitivity, a person’s hearing may at times become increasingly sensitive to sound. Even the sounds that were once not considered to be excessive before, are now too excessive for the ears. The sensitivity is usually short-lived and not a constant bothersome symptom, but there are extreme cases where a person’s hearing can become and remain extremely sensitive. It’s best to avoid noises that irritate hearing for the time being, even if they were once never considered to be excessively loud.
Being the complete opposite of hearing sensitivity, this symptom is exactly as it sounds. A person’s ability to hear may weaken and become less acute during a battle with Lyme Disease. There may be bursts of hearing loss in which a person’s hearing may be normal one day, and the next day they’re having trouble hearing. Such an indication of hearing loss from Lyme Disease includes turning music up, and never feeling the level of sound is satisfying enough to the ears.
Bug in the ear
One of the more frightening, but interesting ear symptoms of Lyme Disease is the delusion of a bug crawling around in one’s ear. Though there really exists no bug in the person’s ear, crackling/buzzing sounds and tingling sensations yield the illusion that there is. The symptom itself is so deceiving that the person experiencing it may refuse to believe that a bug is not burrowing in their ear canal. They will be adamantly persistent about the presence of a bug, but in reality, there is nothing there! The denial to accept this truth may stem from our brain’s innate, but sometimes flawed ability to interpret specific sounds as either threats or non-threats. If this symptom is really bugging you, pun intended, it wouldn’t hurt to have someone such as a doctor peer into your ear to calm your nerves. This symptom is usually short-lived.
Usually all ambient noise has to be reduced in order to experience this symptom. Those with Lyme Disease may hear a perpetual, but faint buzzing or humming noise when all other noise activity surrounding them has ceased. While similar to the “bug in the ear” symptom in regards to the type of sound produced, this symptom can last for an extended period of time. And unlike the bug in the ear symptom where ambient noise need not be reduced to experience it, a quiet room or environment will usually be what is needed to allow a person to be conscious of this symptom.
Remedies & solutions
Hearing Loss – Essential oils such as lavender or helichrysum may help restore hearing loss. Rub the oil behind the ear, especially towards the bottom, the front parallel to your side burns, and in the cup of the ear; never put an oil directly into the ear canal.
Tinnitus – The essential oil peppermint has been found to temporarily relieve ringing in the ears. Apply in the same manner as the oil(s) above.
Hearing Sensitivity – If you find your ears have become incredibly sensitive, purchase ear plugs; especially if you intend to expose yourself to noises that were considered loud even before you had Lyme Disease.”
“Our sense of touch, or ability to feel, is a direct result of the nervous system. We are constantly in physical contact with something, but we’re not always conscious of what it is we are in fact touching. When we become conscious of what has come in contact with our nervous system, we then discern for our own records the characteristics of that sensational experience. The brain remembers if what we felt was soft or hard; cold or hot; painful or pleasant; and even how we felt during the experience so as to dictate and influence how we will approach the same experience in the future.
But the nervous system doesn’t have to touch anything for it to be provoked, at least externally. The bacteria responsible for Chronic Lyme Disease, and even some of its coinfections such as Bartonella, can hijack the nervous system and create strange and unusual sensations normally felt from an external influence. The effect of these bacteria on the nervous system is such that a person may need to consciously remind themselves that what is causing their bizarre neurological sensations is internal; not external even though the brain has been programmed to assume this to be.
Below are just a few example of the strange neurological sensations a person with Chronic Lyme Disease may experience throughout their ordeal.
Tingling sensations are also commonly referred to as “pins and needles”, and for good reason. The sensation itself has been described as if a person was being pricked with sharp pins and needles. A person can feel the sensations at random locations throughout the body consecutively within a short period of time, or in a localized region of the body. The symptom itself can even give the illusion that something external has come in contact with the skin, such as a bug. A notable cause of this sensation to localize in the extremities, such as the hands or feet, is a deep breath.
A neurological sensation that makes prominent to the conscious mind the affected areas of the body. A region of the body will feel numb on its own, but the physical contact from say a hand can be felt. The sensation has been described as the complete opposite of the what an amputee may feel with a phantom limb. Amputees may feel a limb is still attached even though the limb itself is gone. A person that experiences a numb sensation feels as if the region or part of the body is gone even though it still remains.
This is one of the symptoms where the brain assumes the cause of sensation to originate from an external source. The sensation is most commonly, and immediately deduced as a bug crawling on the skin, even before visual verification. It isn’t uncommon either to instinctively swat at the area of the symptom as to remove the crawling bug that doesn’t exist. Much like the tingling sensation, crawling sensations can occur at random locations throughout the body, but also in a localized region which will be brought up a little later.
Buzzing or vibrating
Most people know what a vibrating cell phone feels like in their pocket, which is why this symptom is commonly described as one. This sensation can give the illusion that a person is receiving a phone call from a vibrating cell phone embedded just underneath the skin. But it isn’t just a localized region to where this strange sensation can occur, as the whole body can become what is described as one giant vibrating cell phone. A whole body vibration or buzzing sensation has been found to occur during the original manifestation stage of Chronic Lyme Disease, but to never occur again.
Depending on how severe this symptom is, it can be referred to as just a cold or hot sensation, or a freezing or burning sensation. When a person feels a freezing sensation, it is localized and feels much like an ice-cube resting upon the skin. A burning sensation gives the illusion that a specific part of the body is on fire, or entirely too close to an extreme source of heat. Don’t confuse these symptoms with a constantly cold or hot body, which are said to be caused by a compromised endocrine system or candida overgrowth, rather than neurological disruption.
The ant dance
A sub-symptom of crawling sensations, the ant dance is a localized sensation that ants are crawling just under, or on the surface of the skin. In more detail, the symptom can be described as ants crawling around in a confined area of the skin no more than a couple of inches in diameter. It’s similar to taking a paper cup, removing the bottom so it becomes a cylinder, then placing the cup on the skin with ants inside. The symptom itself is more rare than its fellow neurological sensations, but still causes the same creepy feeling that something is crawling around; or at least that’s how the brain has been programmed to respond.
The most loathed of all the neurological sensations is pain. The level of pain a person with Chronic Lyme Disease experiences can be very mild and last for just a day, or can be excruciatingly severe and last for days. This neurological sensation is located much deeper than the others, in that the muscles, joints, bones, and organs become affected. If you’re dealing with pain from Chronic Lyme Disease, you may be able to find a pain relieving method here – methods generously submitted by those who have endured.”