Showing posts with label CDC. Show all posts
Showing posts with label CDC. Show all posts

7/09/2009

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.

6/25/2009

LYME TREATMENT IS NOT TWO WEEKS!

GUYS, CAN YOU HEAR ME?

  • JUST WONDER IF THE TREATMENT FOR LYME DISEASE THAT THIS GOVERNMENT AGENCIES PRESENT AS A GUIDELINE, IS PROVEN TO CURE THE PERSON INFECTED WITH A TICK BORNE DISEASE IN THE US?
  • I SAID CURE, LIKE MAKE BETTER? LIKE, RECOVERED, GET BACK TO NORMAL, HEALED?
  • DOES THAT TREATMENT OF A COUPLE (FEW?) WEEKS OF ANTIBIOTICS -DOXY?- THEY TALK ABOUT AND STRONGLY SUGGEST THE DOCTORS SHOULD FOLLOW, LEAVES THE LYME SUFFERER WITHOUT TRACE OF THE BACTERIA AND OR THE CO-INFECTIONS; OR AT LEAST WITHOUT PAIN AND SYMPTOMS?
  • LIKE WHEN THE MALARIA IS TREATED: A WEEK OF FANSIDAR AND VOILA, THE PERSON IS BACK TO NORMAL! I HAVE SEEN THAT WITH MY 'BARE' EYES!!!! YOU CAN SEE IT TOO ANYTIME IN AFRICA, COLOMBIA, WHERE EVER YOU WANT! IT'S PROVEN TO WORK, OH YEAH, PROVEN - PROVEN!
  • HAVE YOU SEEN THAT RECOVERY FROM LYME WITH THESE PROPOSED GUIDELINES FOR TREATMENT OF LYME DISEASE? I MEAN, HAVE SOMEONE REALLY SEEN IT? CAN YOU PROVE IT? DOES IT WORKS?
  • SO, THIS RECOMMENDATION TO TREAT LYME WORKS AS ANY OTHER TREATMENT FOR ANY OTHE ILLNESS OR AT LEAST AS ANY OTHER TREATMENT FOR A TICK BORNE DISEASE IN AN ANDEMIC AREA OF THE WORLD?? WHY THE DOUBT AH?
  • I GOT LYME DISEASE SO I JUST NEED TO TAKE A COUPLE OF WEEKS OF DOXYCICLINE AND VOILA, CURED; GO LIVE HAPPILY EVER AFTER? IS THIS WHAT YOU IMPLIED? I'LL BE FINE, OKAY, NORMAL AGAIN?
  • NO?? WHY NOT? REALITY IS NOT AS YOUR THEORY INDICATES? SO IF I CANNOT GET CURED WITH YOUR GUIDELINES, SO HOW CAN I GET CURED OR PROPERLY TREATED? I HAVE THE RIGHT TO KNOW! AND THE RIGHT OF BEING ADEQUATELY TREATED TOO!
  • I HOPE YOU ARE NOT PUSHING ME TO GO GET A DOCTOR WHO MIGHT TRY UNUSUAL MEDICATIONS TO SEE IF LYME CAN GET CURED OR HAVE ME SYMPTOM FREE? YOU ARE THE EXPERTS, YOU MUST GUIDE ME, US, WE, ALL!
  • WHAT DO YOU MEAN WHEN YOU SAY IF "CATCH ON TIME"? WHEN IS THE TIME TO CATCH THE ILLNESS AND TREAT IT?
  • WHY DOCTORS DO NOT RECOGNIZE THE MULTI- SYMPTOMS A LYME SUFERER HAS? REMEMBER A DOCTOR HAS TO CATCH IT EARLY ON TIME, SO WHY THEY NEVER DO? THEY DENY IT EVEN WHEN SEEING THE BULLS EYE RASH; MAYBE THE GUIDELINES ARE NOT CLEAR, NOT COMPLETE, NOT ADEQUATE, NOT ENOUGH?
  • BORRELIA, BABESIA, BARTONELLA, CHLAMYDIA, ERLICHIA, WEIRD NAMES FOR WEIRD BUGS AND PROTOZOANS CALLED CO-INFECTIONS OF THE TICK BORNE DISEASE, SEEM TO EASILY SURVIVE TO YOUR RECOMMENDED FEW WEEKS OF ANTIBIOTICS; DID YOU KNOW THAT?
  • HOW COME WE, SIMPLE COMMON PEOPLE, NOT EXPERTS, KNOW THAT YOUR GUIDELINES FOR TREATING LYME DISEASE ARE NOT COMPLETE, AND YOU EXPERTS DENY IT?
  • SO EVERY PAIN AND SYMPTOM THAT KEEPS ON GOING AFTER YOUR FEW WEEKS OF TREATMENT IS "CHRONIC", MEANING WHAT, NOT CURABLE? LIVE WITH THAT FOR EVER? WOW, MAY GOD PARDON SUCH NEGLIGENCE!

CAN THEY SLEEP AT NIGHT WITH A CLEAN MIND? I GUESS NOT!

I CAN'T SLEEP OF PAIN, BUT ENJOY MY TIME PRAYING FOR JUSTICE!

M. J.

6/23/2009

LYME DISEASE LINKS AND INFORMATION

I hope this information helps to understand the magnitude of Lyme Disease and resources to use. Just click on the link, but come back to get more!
VIDEOS:

Documentary Film on Lyme Disease and Stealth Infections

BLOGS
WRITTEN INFORMATION, MEDICAL ARTICLES AND ORGANIZATIONS
LABORATORIES
  • CLONGEN LABORATORIES http://www.clongen.com/lyme_disease_testing2.php
  • Central Florida Research, Inc http://centralfloridaresearch.com/lab2/ Lyme Antigen Test http://centralfloridaresearch.com/lab2/index.php?option=com_content&view=article&id=50&Itemid=58

 I hope this is a start! ...........


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.
 

6/15/2009

LYME GUIDELINES ARE CRUEL!

  • It is inexplicable and has no reasonable excuse that "serious" organizations, government oriented say that Lyme disease and its co-infections should be treated with just two, maximum four weeks of antibiotics, like Doxiciline. This is cruel and has no real medical basis. Tick borne infected people need longer and proper treatments to recover a healthy life.
  • How can this so called serious organizations proclaim such treatment (s) knowing that it doesn't kill the bacteria nor the parasites that result from the tick borne infection? Because they do know the bacteria is not killed, murdered, expelled or dead after such short treatments they recommend; or can they dare to say that the bug is completely eradicated and the sufferings of the patient are gone after following their guidelines?
  • I dare to make a bet to see if they are right stating that the bacteria is gone, by making lab tests with this laboratory in Central Florida who is now - finally- detecting the bacteria itself, not like the other labs that just detect the reaction of the body to the bacteria.
  • You, huge organizations, do you dare to test patients treated, based on your poor guidelines, and then test them to see if they have the bacteria, parasites, protozoans and microorganisms alive? I bet what is left of my health to prove they are still alive and creating colonies inside muscles, tendons, bones, organs, glands and brain of the patients; prove me wrong, please!!!
  • So now, after your recommended treatment, because it doesn't really trully completely work, you call "Chronic Lyme" the persisting symtptoms of the patient? "Chronic" meaning, suffering for life and never going to be cured? Is this your excuse after neglecting that the treatment is not complete, is not correct, is not healing?
  • Oh, excuse me, now it is not called "chronic" but "Post-Lyme", and it means the same: "suffering for life and never going to be cured?"
  • Chronic or post-Lyme, which ever you prefer. Truly meaning negligence in trying harder to find a cure; avoiding spending money in lab tests and medicines at the expense of huge suffering from the tick borne infected people and their families. Even punishing Doctors who have given longer treatments because it cost more money to the insurance; wow, absolute evil!
  • Because, if we won't be suffering, if we were there just living like vegetables, you could be there believing that your guidelines are good because they work fine for you and your insurances; but not, you have huge responsibility pending over your heads; every minute we suffer is your accountability!
  • We are pouring pain every minute you don't treat us properly and the truth will arise and this negligence will be known and the world would judge.
  • Some day the medicine will take care of us, long term Lyme sufferers, beyond the limits of your short guidelines! Because at the end, life is always fair!
  • I BELIEVE!