LYME, THE REAL SYMPTOMS!

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.

• HEY I DIDN'T MENTION THE RASH AS A SYMPTOM, THE SO CALLED EYE BULL'S RASH? WELL, IT IS A SYMPTOM BUT NOT A UNIQUE INDICATOR BECAUSE MANY TICK BORNE ILL PEOPLE DON'T EVEN HAVE IT, AND WORSE, MANY DOCTORS IGNORE IT!

• More professionally and better explained symptoms in this place called Lyme disease Foundation, Inc, click here and read!

MY GOOD DAYS ARE CALLED GLORIOUS DAYS; TODAY WAS ONE OF THEM! THANK YOU GOD!

NOTE:  LYME THE ROLLERCOASTER BLOG DOES NOT OFFER,  DOESN'T GIVE,  NOR INTENDS TO GIVE ANY MEDICAL ADVISE NOR MEDICAL RECOMMENDATIONS.  THESE ARE JUST MY THOUGHTS, IDEAS, RESEARCH AND EXPERIENCE SHARED.

LYME, LIKE IF I'VE WON THE LOTTERY!

• Lyme is considered the number ONE tick borne illness of the US, but no one has heard about it, and I got it, wow!

• And it is established that it is located in the North East Coast of the US; I have never moved out from Florida during 10 years I’ve lived in this Country except for last month when finally went to Maryland to see the Doctor that could test me to see if I got the illness.

• In some cases, Lyme can be a mild illness, and people could have it for years without knowing they’re infected; not me, it has been horrible since day one and has not stopped being painful hard during almost three years.

• Suffering from Lyme Disease is about having to fight or surrender under the domain of a bacteria transmitted by a tick; the bacteria is known as Borrelia Burgdorferi. It causes symptoms like malaria, meaning kind of flu pains all over the body and in the bad cases the problems spread to the joints, muscles, heart and central nervous system; wow, lucky me the one I got is the very bad version!

• But this is just the beginning… The tiny ticks pass not only the Borelia, but other co-infections which are other bacteria or parasites or protozoan; guess what, I also got one called Babesia, also called "The Malaria of The Northeast," which, as the second name indicates, generates “malaria like symptoms”, meaning, if one is not enough I got two of the same type just to make sure!

• But, of course, if Lyme sounds bad, Babesia is the “fierce” of the family; its symptoms are extremely stronger and faster! It is “thought to be the second most common blood parasites of mammals”, so I got the first and second most common dangerous illnesses transmitted by bugs in the US; that is something ah? More, considering that I came from a “third world country” that has tropical illnesses, and that twenty years ago I lived during two years in a region in the middle of the jungle, at the Pacific Coast of Colombia, considered one of the most endemic zones of malaria of the world, and never, ever got any illness…

• So, coming to the US to get a stronger and more sophisticated type of malaria like illness, (in fact two different ones), much more difficult to eradicate, not well known and in most cases dismissed by medical personnel is really a unique weird “winning” situation.

• And it is officially said: “The number of symptoms and duration of illness in patients with concurrent Lyme disease and babesiosis are greater than in patients with either infection alone”; as I said, got two for the price of one!

• But when I win, I win big! The tinny tick also gave me two more types of “pathogens” or protozoan or, calls them bugs, which the lab could not identify but who are inundating my blood and who knows the harm they’re doing there…

• My recently acquired expert Doctor says Babesia appears as a co-infection in many Lyme infected patients; but the book reads that it will “always be a mild case unless the person had their spleen removed surgically” … what? I didn’t! And it is certainly not mild!

• It also reads: “severe cases are also more likely to occur in the very young, very old and persons with immunodeficiency”; I’m not any of those nor have HIV or had any other type of illness!

• And the last more funny excerption of Babesia: “Babesiosis develops only in patients who live in or travel to an endemic area or receive a contaminated blood transfusion”... so, I never got a blood transfusion, have not traveled anywhere different from Central Florida or Miami which leads to saying that this might be “an endemic area” ??? No way! Disney doesn’t have dangerous bugs, just nice mice that sing and play all day!

• “The health officials say that Babesia Microti is the most common strain on the East coast.

• Babesia Duncani is only supposed to exist on the West coast.” Really? I got the one of the West Coast, how did it travel to Florida?

• “Babesiosis in humans is characterized by anorexia, fatigue, fever, sweating, and generalized myalgia”; I have increased smell and lost of taste due to the Lyme and add the anorexia with the Babesia; a double win? More over if I had gained thirty pounds when I never changed my weight in more than 40 years plus I’m barely eating a little meal once a day!

• “The best way to find out if you have Lyme disease is to talk to your family doctor about your symptoms. Blood tests aren't always necessary to make the diagnosis”. Can I “LOL”? Saw seven Doctors, some family Doctors, other specialized in the Heart, or the Endocrine System and even an “Infectious Disease Specialist” who said Lyme didn’t exist in Florida, so, no one diagnosing me correctly was just “lucks”?

• “A relatively recently described babesial parasite, the WA1-type, has been shown to be the causative agent in seven human cases in the western US. This parasite is closely related to babesial parasites isolated from large wild ungulates in California. Isolated cases of human babesisosis have been described in Africa and Mexico, but the causative parasites were not well characterized.” The WA1 type is the one I “won”… I’m in Florida, Central Florida, not California or Africa! Other writings talk about China, Egypt and Taiwan; may be I got the tick from something I bought from the dollar store?

• Now what? I have no way to convince these Gringos that they have a really endemic, dangerous, painful illness disseminated in their whole country. I got LYME DISEASE and have to suffer the worst strain of it without any hope ahead, just supported by my family who are surprised to see this type of situation could occur in the so called “the most powerful country of the planet”. We have better medical attention even in the smallest poor village of our miserable third world class country. They know what malaria is, they have the medicine to treat it and they cure it. The government takes measures to prevent the illness and to stop any possible dissemination over the other regions or the world. That is not seen here with their endemic illness; and for what I have read, England and the other European Countries are also trying to cover the sun with their fingers ignoring the severity of the illness; but later on they all will know they had generated a pandemic due to the lack of attention and proper care. Canada and some regions of Germany are trying to work their part, God bless them!

• Note 1: Please excuse my irony, it is my way today of expressing my frustration. I am now having an amazing Doctor who is taking good care of me and his 75 patients a week; I am thankful. I hope I can open the eyes of some others that don’t know about this!

• Note 2: As a Social Communicator and Journalist I can present documentary proof of what I say here and of my medical history.

CAN DOCTORS TREAT LYME DISEASE?

"If a patient is doomed to a horrible death, how can anyone with a drop of compassion argue against therapy?". These words belong to the blog of the "Montgomery Doctor" and should be printed in every Doctor's chart. How can Doctors ignore the suffering of a Lyme patient and the possibility of treating and healing him or her? Why they fight about calling it different ways instead of really trying to help the patient? It is easier to say that this patient who is suffering neck stiffness, generalized fatigue, arthritis pain, muscle pain, diarrhea, blurry vision, tingling in hands an feet, palpitations and problems remembering words or sleeping disturbances, is really semi-crazy person and should better take some 'lorazepam' or some psychiatric medicines, than having to go through all this pain and suffering and try to solve it as if you were a real healer! Then, if the patient gets worse, Doctors can say it is a strange illness generated by the immune system that cannot be defeated; easy! (Or a virus but we don't know which?) (Dr. House might know!!) Why multi-system disease patients are not treated when these are the ones suffering the most? - Because Doctors cannot treat more than one illness at the time? - Because books for Doctors recommend not to treat more than one illness at the time. - Because it might be very confusing not knowing what to treat first, or what to do? (which shows not only negligence but ignorance; books explain this?). - Because if it is considered just ONE same illness many would loose their "specialties" and they charge specially for it. - Because the more Lyme is seen as different illnesses, the more Doctors the patient has to see, more tests, more drugs; better business! - Because having a so much creepy patient is scary, better send him to someone else! - Because North America doesn't want to admit it has a "proper" illness as South America and Africa have Malaria! (I think this is one of the most heavy reasons, believe it or not!). - Because it is easier to treat a patient for a month than having to treat for years, not only administering antibiotics and different medications but testing their vital organs and their responses to the treatment. Money again ah? - Because - this is funny, cynic funny- because LABORATORIES CANNOT DETERMINE IF IT IS LYME! incredible, it is out of any mind seeing that what is detected is the answer of the body to the bacteria, but not the bacteria itself. And worse, the Montgomery Doctor and others have found some microorganisms living in the blood of the Lyme disease patients and still any lab has said what it is and how to kill it! The worse is the patient the more of these bugs he/she has... come on!!! Hey, you should get help from the South American laboratories, they might know...? - Because there are more Doctors fighting the ones treating Lyme than treating their own patients!!! (funny ah?). Doctors and medical personnel dedicated to annihilate and exterminate who ever say Lyme disease is treatable with long term antibiotics! - Because of so much ego. There's no collaboration between different scientist, medical personnel and laboratories; the only thinking is the money. - Because there are no expensive medications created specially to treat the terrible Lyme disease. Like cancer, people has to pay a lot to be treated, in this case, they have not invented their unique formula to charge for it. I just created a very lucrative business - an this in the middle of my "fog mind". - Because no one cares for the ones left behind. If you are rich and famous you are well taken care, but if you get deadly sick, and are poor or not rich, better start praying your last ones... - Because even the possible cause for acquiring the illness is still in doubt. Some say the tick (American?) is the only one cause, others now say maybe dentists? shhh, do not touch the untouchables, they are perfect! - Or what about thinking it is a bacteria that lives in the hospitals and clinics of NORTH AMERICA?... ha, impossible! -Because there are not enough reasons to treat Lyme as a multi-systemic multi-symptomatic illness. No political reasons, no economic reasons, no medical reasons (due to there are no expensive schools to prepare Lyme specialists), so until today they are just pragmatic Shamans! Plus there are no patient reasons: has anyone died from Lyme disease? So, you are not going to be understood dear Montgomery Doctor, they don't want you showing off by "curing" Lyme patients; how can you dare? They argue against your therapy because it is not under their rules, their business and their interests! So, as a patient I know God is there and He is there for me too!