It is now being said that Lyme disease is a multi-systemic illness? sounds so huge! I would like to translate that into more common words based on reality. I do ask you to please excuse me ahead due to words are for sure not enough to describe interminable nights and days of pain, suffering and fear; plus, English is not my first language so I have a limited vocabulary and probably a very particular style in my writing when describing so, sorry for that too. Let's take a look at each "basic" symptom of Lyme disease. Let's start by a very common one, that seems to be "simple" but is so extremely complex and delicate in reality:
  1. "Patient presents Neck Stiffness". Who ever reads or hears this could think it is the common stiffness many had felt a couple of times in their lives; but not, the "real" description is far from that: (Nothing that a chiropractor can fix, sorry!)
  • the walls of the neck swell up, every gland in the neck swells too and this hurts of course; the sides of the neck become like two hard pillars that impede the head to move and if it does, it really hurts; - like your neck stiffness multiplied by a hundred? - wait, there's more:
  • swallowing is painful too, but worse because the trachea feels like loose, and the process of swallowing becomes very difficult, it is slower than usual and it seems that you are going to choke even with your own saliva; - slower swallowing is a problem of the central nervous system, meaning neurological-;
  • but the tongue is swollen too so just by being there, by having your tongue inside your mouth - daa- you are kind of choking, no need to drink anything either; - the Chinese Doctors always look at the health of the tongue, swelling means what?
  • and due to all this swelling in the neck, the thyroid is not only swollen herself, but also pressed up and hurt by everything around her, so the person gets more symptoms like palpitations, bradycardia (slow rhythm of the heart), arrhythmia (not a regular beat), problems with the hormones, hair loss, dry skin, etc-
  • did I mention fear, panic disorders, sleeping problems, depression? just some other symptoms generated by this particular gland called thyroid; and this will have to go to other category because other of the "simple" symptoms Lyme generates is the alteration of all the lymphatic system, meaning the glands of the body, but that's another topic.
  • and cannot end talking about the so called "neck stiffness" without also mentioning that this swelling goes deep inside the head, just where the neck gathers with the skull in the back. There's a gland - I think the pituitary - that when swollen causes such a deep pain I call it "The Brutal Pain", and it irradiates to the inside of the head and to the eyes - heat helps a little to relieve it-. Just part of the stiffness... and causes blurry vision and sinus problems...
  • The swelling is so huge it might affect the skin of the head too, so the headache is really an encephalitis... painful and dangerous, needs fast attention!
  • In my humble opinion, the neck stiffness is an indicator of whether the treatment is working or not. I think the neck stiffness is a result of having the bugs up in the nasal sinuses or maxillary, and the liquid that comes out from the nose or throat it is so contaminated that the body fights it with swelling. I would like to better describe my theory but that is not the point today. I have seen that by treating the sinus with series of antibiotics sometimes many or most of this symptoms go away. Also use salt water to clean sinus passages and everything you might have to help your self!
2. "Fatigue". If someone comes to me and say I have fatigue, I cannot relate as to truly understand that the person is in such bad condition that can barely move, walk or do any simple activity.
  • The fatigue that affects a Lyme disease patient is not just being a little tired, means the physical body is out of energy to operate;
  • The fatigue is also having all the muscles loose, like fallen, like not tied to the bones, so the body can hardly move - and it hurts and then it is called "fibromialgya"? just a symptom?
  • The so called fatigue is also when the bacteria and parasites affected the nervous system, so the response of the muscles and tendons and all the "things" is not as it would be in a healthy situation; the person is not really fatigued, in reality it is not able to do anything!
  • I would like to add here the symptom called "Generalized malaise" - flu like symptom. It is really a flu but hundred times stronger and lasts forever, simple ah? So I think it should go in the "fatigue" category!
  • yeah, fatigue seems to be understood as lazy person, not willing... and it is the opposite!
  • and in other situations it is precisely one of the symptoms that might easily be considered as an indicator of other illnesses and leads to lots of misdiagnoses...
3. Neurological Symptoms... people think neurological means crazy, or even some Doctors find a neurological symptom and immediately refer the patient to a specialist and or to a psychiatrist... deep water very scary to swim ah?
  • So let's start mentioning some of these like the so called Bell's Palsy... it is a side of the face that gets kind of paralyzed like the name implies, but it moves when the person talks or eats; it is not that there's no control like when suffering a stroke but the feeling is similar to it, and I bet Lyme sufferers get the "Palsy" precisely due to a "kind of stroke" Lyme Disease "imitates" so well... this symptom is many times a huge indicator of the presence of the bacteria Borrelia... nasty ah? 'cause is not only the suffering, the pain, the having the face numbed like when you go to the dentist, but also the self esteem is affected, sick and ugly ah? - may I say? the long term antibiotic treatment helps to have the face more symmetric-
  • some Doctors have learned to "read" into the neurological symptoms to find out and rule in a clinical diagnostic the disease. The tests are not complicated and any Doctor should be able to do them. It is said that the central Nervous system is affected with Lyme Disease, so neurological symptoms might mean Lyme, not just neurological!
  • People with Lyme is so hurt that many times don't realize that they have lost sensation in the legs, or down in the toes; many don't know the blurry vision or double vision is a neurological symptom. Some cannot even coordinate touching their nose with one finger and loose many other "simple" skills.
  • Lyme sufferers might get "inner pains", like inside a leg or inside the hand, and it is purely neurological; plus also have at the same time the muscular pain and the joint pain all together-(as I titled one of my blogs "Lyme, like I've won the lottery", meaning it seems like such a unique astronomic situation! ) So, this inner pains are like a lighting, burning pain; and some cause the fingers or hand to curve, to roll, to be uncontrollably... terrible!
  • Heat - ha - heat sensations inside the extremities or outside in the skin. Sometimes the feeling is unbearable, other times is just there, constant bothering...
  • The senses like smell, taste or hearing affected increased or decreased. There's people who suffer of terrible ear pains because they get an increased hearing, and the sounds seem to be so strong the pain becomes unbearable even using ear plugs. It is a real killing pain!
  • Other neuro symptoms could be increased smell, and this "simple" symptom affects the taste for the food - so it is loosing the pleasure of eating - and if you add these to the anorexia generated by the parasite babesia well, there's a huge bad situation there involving the vital act of eating.
  • don't forget the light sensitivity, it's like standing in front of the lights of a huge concert, where you can barely see what's at the other side; and it hurts! I mean, not only unable to see due to the double vision or the blurry one, but because of the light; and not being able to enjoy music because it hurts...
4. Arthritis and muscular. (Had to gather these as if they could be easy to explain, but this is getting so long!).
  • Most of the readings indicate that the person gets a pain in a "large" joint, meaning not all the joints and points to the bigger ones like the knees, well, in my case for example my fingers and wrists have been the ones affected. Maybe because I use them before so much writing? I do not run or make that type of exercise so maybe that's why my knees doesn't hurt? would be good to compare. The point is, the symptom refers to a type of arthritis but tries to show it like a sign not as an illness by itself, differentiated by precisely not affecting all the body, or all the joints but "just" some or even one?
  • The "Lyme arthritis pain" goes with long antibiotic treatment; I don't know if the arthritis does too? (I am here writing all this thanks to antibiotics if not I will be trying to sleep, writing in my mind, unable to move my fingers for so long!)
  • So, just imagine someone with the neurological symptoms and the arthritis ones together singing the same song; and to these please add the muscular pain that also come in a variety of feelings...
  • some of the muscular pain, mentioned in the book like just a hurt, is in reality a sharp deep pain that shows out of the blue like cutting the muscle; it's fast and very extremely painful; when you are about to yell it is gone.
  • The painful sharp pain shows from time to time, and it comes and goes because the person is having treatment and because the person is not having treatment too! (Is this the fibromyalgia that many Doctors refuse to see like muscles affected by bacteria and or parasites?)
  • Other is a muscular pain that lasts, that persists and it is there no matter how you move, or if you use hot water or a cold ice... nothing helps! it is a very "stable' constant pain not as strong but yes a seven in a scale of ten.
  • This long lasting muscle pain is part of the "fatigue" situation! I believe the long pain is due to having the muscles "loose," meaning that Lyme Disease affects the capacity of the muscle to contract and the muscle structure is lost and the person gets weak, obviously!
5. The HEART! This special symptom could go with the "muscle division", because it is a muscle, or with the organs affected, but the heart symptom is so particular with Lyme Disease that should be "honored" in a special classification...
  • One of the first, maybe very distinctive symptom of Lyme heart relation is the bradicardia. It is feeling that the heart is beating stronger but slower... is such a weird feeling. People gets scared of having the heart stopped and the "guidelines" recommend to take special care in this cases; well, care given by whom may I ask, because Doctors don't seem to recognize this symptom well. They just send the patient to a Cardiologist who is going to say that the heart is healthy and there's nothing else to do, so the Lyme sufferer will suffer the heart pains and palpitations with no help nor hope!
  • Oh, well yes, there is something the cardiologist might probably say: "you seem to be very anxious, take these pills for anxiety," ignoring the symptom behind the fear... and who is not anxious feeling the heart is doing funny weird strange painful things?
  • The heart is being affected directly by the bacteria and by the parasites if this is the case. The heart has to be treated and taken care to avoid damage, don't ask me how.
  • Palpitations, fast and sometimes with funny rhythms become part of the every day symptoms of many Lyme sufferers. One thing is to say palpitations and you might relate like when you do exercise and do "cardio" and other thing is to have that speed and strength without moving a finger, or precisely literally because you just moved a finger and those palpitations hurt, hurt badly.
  • I get palpitations because I have not had the medicine, and the body shows signs of not being fine; but later, because I took the medicine -and it is strong - I also get other type of palpitations. I read something that indicated that the medicines for the malaria were found to be good to regulate the heart palpitations; incredible ah? please do research!
  • Other heart symptom with Lyme Disease is a deep pain, inside the chest, deep and sharp but not as strong. It is a pain that lasts, that stays and doesn't let you move because it is very incapacitating. This pain is very confusing because the person cannot tell if it is a sign of a heart attack or not.
  • And do not forget that the heart, of course is a vital part of the circulatory system, and it is found that Lyme disease, as some times happens with Lupus and other diseases, affects the flow of the blood and the veins - the person feels pains in the veins inside the legs or hands, "just" as part of this multisystemic illness... like if it were not enough with all the other stuff.
Because this writing is so long, and my hands are really tired now, I would like to leave the long list unfinished and to close saying that what seems to be "just" a group of symptoms is much more than what a "regular illness" might present; and, as you can easily see, it is a very extreme painful situation that requires urgent medical care to help ease so many symptoms popping at the same time. This very sickening illness is not CURED by two weeks of Doxi or in the "worst cases" with four weeks of IV antibiotics; sorry, it requires months and years of a very careful compassionate professional treatment! Ignoring such pain and suffering is obviously negligence! And let me clear again that these words come from a patient not related to anyone in the industry or medical field or suing someone or anything, just what my suffering had taught me and what I think should be said or made to help others.
  • More professionally and better explained symptoms in this place called Lyme disease Foundation, Inc, click here and read!




Someone told me, don't worry this illness is not going to kill you... I said, great, good to know, and laughed!
  • I would like to honor Leslie Wermers, and with her to all the patients who had died of Lyme disease; many feeling abandoned by the medical personnel or by the society who blame them for their illness - "Its all in your head"-.
  • I would like to honor Sue Baiata who had to end her life to stop suffering after being neglected by many physicians for years; and with her to many who suffer every day of pain and fear who are not crazy but extremely sick; here we are together gathered in one voice .
  • The illness is so strong, and everyday is such a struggle that the Lyme sufferer is facing death every now and then! Yes, everyone is going to die, but who's so strong to live with it's life pending at every second?
  • There are times that the body is so extremely weak that just chocking when swallowing a drink of water might be a deadly situation!
  • Lyme patients suffer "kind of" a heart attack, kind of a stroke, sometimes kind of a paralysis, at the same time might have an arthritis and a cramp that might be muscular or caused by the central nervous system.. yeah, something anyone can handle, not to be worried about right?
  • If Lyme Disease is diagnosed early it might not - not sure - but some say it might not be a deadly illness, but, how many cases are misdiagnosed versus how many were early diagnosed? IDSA is now offering a Course to medical personnel to teach them how to recognize early symptoms, all based on their guidelines... meaning based on treating with the minimum medicine to get rid of any responsibility...
  • People dies from Lyme Disease but the records say something else like "Heart Failure" or what ever other symptom looks stronger. I think this is unfair because the person was misdiagnosed alive and misdiagnosed dead.
  • Not stating that the person died from Lyme Disease is hiding the truth and the magnitude of the infection.
  • The Public hearing that IDSA organized to see if there's need to review their guidelines, is it going to consider that each patient is facing a death threat every day? ha!
  • Are they (IDSA) going to analyze the magnitude of the problem that now is affecting the public health in the US and threatening the rest of the world?
  • Are they (IDSA) going to change guidelines to help ill people with Lyme Disease who constantly face negligence and are sent to a painful life and death?
  • I would also love to be able to thank so many who have dedicated their lives and jobs to help others who are suffering severe illnesses; thank you from our hearts and souls and may God in justice return to you lots of love and care when ever you need it the most.
Please watch the short video of Leslie Wermers -never met her, but she fought for me and I fight for her -; and please read the beautiful article Bob Baiata wrote about her sister Sue.