MY UPSIDE DOWN ROLLERCOASTER!

• I have seen that every case is different and that every one reacts differently to the different treatments given, or to the lack of treatments. What I am sure of is that for most cases of Lyme sufferers this has not been a stable healthy situation; it looks like each one is living it's own roller coaster!

• Mine is a very particular one, at the point it seems to be one of the fastest ones I've heard of or read about. I can easily have some good days while taking Unsayn in injections or the pills called "Sultalbac" - that are the same mix of Ampicillin with Sulbactam; - and then be down the roller coaster just a week after I "finish" the treatment... and when I say "down" I mean suffering lots of nasty symptoms and getting close to be totally incapacitated of doing anything to help my self.
• And I should also clear what I mean when I say "finish" the treatment; and it is when I have no more injections or when my pills are gone; not after certain reasonable amount of time. These are very expensive antibiotics and I get what I am able to buy; plus, I do not have a medical prescription to be able to buy them regularly. Yes, this is what this Doctor called "guerrilla antibiotics" meaning buying them out of the country or "under the table"? with the difference that the guerrillas cannot buy antibiotics anywhere they live, and that no one sells under the table antibiotics in the US; so the expression is not really correct: "guerrilla antibiotics" should better be called imported antibiotics or, like in my case, brought from other country by a generous someone.

• As a normal person, an antibiotics treatment should be taken for a couple of weeks or maximum for a month, so that's what I have done, just to find it is not good enough to kill what ever bug is killing me. This being said I would like to add that the longer I am able to do the treatment the better I feel and the more it lasts. But again, every time I finish it, I am back to getting sick again. I wonder if I could get longer treatments would I get better and healthy at the end?

• I am having such glorious days that I can live absolutely normal, sleep like anyone else, dance, eat, work and do what ever I want and need – like bathing my dogs which is a strong job, or cleaning the floors of my house which requires strength too, or painting the walls of my bath and bedroom – to then realize it was just a dream because when my treatment is over I go back to having so many different incapacitating pains that I end up barely taking a shower and being able to make my bed as my most huge accomplishment.

• I believe I have not being properly taken care by the Doctors I have seen precisely because I mention this roller coaster and I tell them about the many symptoms I have. Doctors get “confused” and won’t dare to treat a case like mine. Specialists don’t do it either because their name states they just take care of one thing so, showing up with many different symptoms seems not to be in their comfort zone either…

• So, it is really hard to maintain a very optimistic attitude knowing that I cannot get any medical, professional help in this country; but I hold on because this amazing Doctor in South America takes my calls and dedicates me the time I need to get his advice. He is desperate for having me tested against bacteria and viruses, but I have not had a Doctor here to give me such prescription. Mean while I try to hold on to this very painful roller coaster.

• I live out of what ever God brings me, one day at a time. I live happily aver after though! Yea, happy. I think it is because of my husband, daughter, sister, brother, nephew, dogs, cats, family and friends; and dear God who has not abandoned me in the middle of it all. They all have been with me in the goods and the bads and believe me I have had them all!

• I know I should detail more the ups and downs of the roller coaster, but like in a friendship, I am being a little superficial until I get more accustomed to writing in first person; time will tell! I just hope I can give some hope or ideas to others who are in situations similar to mine, and to bring some light to the medical field who is totally in a obscure denial of this problem. Lyme exists!

LYME: CHRONIC SCARING THREAT!

Knowing that very few Doctors really know how to properly treat Lyme disease, and that most of them deny its existence, is a very scary death threat... It is so unfair all the arguing trying to demonstrate that the Lyme sufferers are "just chronic" - meaning it is people with symptoms product of an old illness or treatment, and people that cannot be cured or doesn’t need to be treated because they cannot recover?. Meaning: condemned to suffer like in hell; but because of negligence and ignorance of the medical personnel because yes there is possible treatment and real recovery and healing! And it is not a magical poison; it is just a regular medical ample proper antibiotic treatment! How can it make sense to think that someone in pain, actual, current pain, has an incurable or untreatable illness, when this same patient shows positive responses to long antibiotic treatments if they are properly administered? So, by saying it is a chronic illness Doctors become negligent to a possible solution and deny treatment or argue that the positive response was due something else different from what it was? Adequate long antibiotic treatment that many refuse to prescribe saying that it might harm the patients long term health ignoring the, precisely, long term health affected by the bacteria and co-infections the patient already has destroying every cell and organ of his/ her body? Again, negligent to treating a patient by finding words and discussions that doesn’t bring any healing to anyone, and opposing to who ever finds solutions or brings new cards to the table; as if these might make them more important or famous, and as if these would give them satisfaction when they meet with their own thoughts and feelings. Please do not let the Lyme patients in “limbo pain”, there are options and possibilities; and their faith depends on your good hearts. There is no chronic Lyme disease; there are chronic Lyme sufferers which is very different.

LYME, GOOD SYMPTOMS!

Having a reaction to the treatment, 'herxing" is normal, but not recovering gradually or feeling better in the long term is not normal. I do not agree with the weird community that thinks that having pains and suffering means the medicine is killing the bugs! I have read in so many blogs and posts that when they are herxing they think it is because the medicine is working so they have to herx and herx and herx in a very painful daily situation. They all think they might get better later on, at the point they tell others to "hang on" waiting for the promised land, and then I read cases of people who's been suffering for two or more years but happy thinking one day the combination of medicines they are taking will magically work... I think that's sick! Medicines have to show they are working right away; not immediate but in a certain logical time. I just read a post from the Montgomery Doctor who tells the story of this woman who,responded very positively to the antibiotics in just a week; a not very common case, but real! When a very sick person takes something that does him or her, some good, the patient immediately notices it; there is certain improvement, certain feeling that is not just "herxing for pleasure"; and the sick person also knows "the opposite" - when that medicine or what ever he or she took did some negative reaction. Patients learn to deal with their treatments and know which medicines causes a strong but positive reaction; or, by the contrary when that reaction is not good even though it is not too strong or notorious, and won't help them in a long term. So, herxing is not good if it is not a near way for improvement! My good symptoms are: No blurry vision, no pain in the back, neck not swollen, no swollen glands, no swollen hands, no pain in joints, no headache, no diarrhea, no bloating stomach, no night sweats or feverish feeling; mental sharpness, fast walking, no palpitations, strong attitude, lots of happiness and thankfulness, ability to pray or elevate thoughts, planning and organizational skills; fast movements, ability to smile and understanding, no mood swings. Non stop writing! If the medicines are not working; if you feel you are not improving - sorry - change the Doctor, the meds and the attitude! Every day I pray for those who suffer with no hope; may God give them strength! I am here with you while you are in pain and suffering, I can share it and I can tell you there is light out of that tunnel.

LYME: WHAT NOT TO SAY!

Hi, I read this blog of this woman who said that this other Doctor did take care of her and looked at her symptoms, but the surprise was because she had gone to so many Doctors and no one had really helped her, so she wondered what she said differently this time, or what moved this Doctor that didn't move the others. So, how to approach a Doctor when you are multi-symptomatic and feeling that you are almost dying in pain and of this unknown strange illness? my truly honest advise? do not tell everything that you have! Sounds weird and not recommendable? Well, it seems that Doctors just want to treat one simple easy illness and go to eat lunch earlier! I give it a try and went to an "infectious disease specialist" and made a list in the computer, very well presented, of the many symptoms I have and the ones I have had that had gone with the antibiotic treatment... well... this poor Doctor didn't know what to do, how to diagnose me. He end up writing "chronic bronchitis" when I have never coughed nor have respiratory problems - thank God is the only thing I do not have!!!!- But the Doctor was so swimming in such deep waters that he could barely hold on! And I assume this is the reason why, also, the endocrinologist told me, at the end of the consult, "and you are going to be okay, and you do not need to come here anymore, for nothing else". To what I said: really? what if I do? and he insisted, "no, you do not need to come back, don't come back"! My bet is that this incredible list of pains and symtoms scare the Doctors. The one Doctor I thought was really going to help me, because he knew me and he knew I used to work in the medical field so at least he can - in theory - trust me, said after reading my interminable list: "wow, all these you have? I bet is is an allergy, lets try these nasal sprays and these steroids"! But what I really need you to think about is the "mental" situation... if the Doctors see many symptoms they would pass the hot potato to a psychiatrist, and you would remain in pain until the last of your days... You might not now, yet, what is to wake up with pain over all you back; with pain in all your muscles; with pain in your joints maybe knees or shoulders? with tingling like if you don't know if you can feel or not your extremities; with palpitations and pain in the chest; with difficulty swallowing feeling that the air is not passing anymore; with pain in the neck, and in the thyroid and in the pituitary, and of course, with fear... yeah, the magic word: FEAR. If you declare you have fear when you feel the palpitations and the chest pain; fear when you cannot really move your legs and they hurt; fear because the pain in the back is so sharp that you cannot tell if you have a knife stuck or not; fear of not breathing or fear that the paramedics won't be able to come on time or to fix what ever is that you have... if you confess that FEAR, they - the Doctors- think it means that you don't have Lyme disease or any other illness different from a mental one; so you wont' be treated for the bugs that are affecting your health. They are probably going to say: "You seem to have panic attacks"! "You look so anxious!" That fear is normal; anyone would feel the same in such circumstances! Hope you can find a way to talk to these Gods, I really haven't!

LYME: MULTIPLE PAIN ILLNESS!

Yeah, it is easy to live when you are healthy, but when it comes to be in pain, or with difficulty to move or even think, things dramatically change. Your perception of the life changes, and the way the life around you sees you, changes too! When I got LYME or how you want to call it multi-pain, multi-symptomatic illness, I just got out of the game almost immediately without time to even argue! From one day to another I passed from being the one that pushed the world, to be one of the slow ones that move around the mall being pushed in a wheelchair! Yes, I imagine these sounds like the poor sick woman story and how she drank a juice that cured all her problems. But not; it is quite the opposite. This is the poor woman story where there are not juices to cure her and where no one cares if she doesn't get them either. And please do not misunderstand me. I do have a great amazing family who cares enormously for me, but there are no Doctors and no medicine personnel who want to try to help me even though it is not an incurable illness; at least even though it is a treatable illness. Why I do not get the appropriate care? because they are fighting over the name of the illness, the way it is acquired, the treatment and I imagine the insurance providers, the medical schools, etc! So they are not treating for this bug, yet! political people ah? But this is not about me; or not totally about me. It is about an illness that impedes a regular life; an illness that can leave a patient painfully quadriplegic and absolutely crazy, if not treated on time, out of time and after time!!! - as one of the Doctors that I have gone to mistakenly told me: "Antibiotics don't work if it is chronic Lyme"; false! What doesn't work is to not treat, and to not treat long enough to fight the millions of bugs that are affecting the body. And what is worse - not just about me, see? - if Lyme disease is not being taken care by medical organizations, it can easily become a pandemic! How and why? because if now Doctors don't really know how to treat it, what might happen if they ignore it and it grows to incredible proportions? many are infected and it seems that this number grows every day. Why it is being ignored as an illness, and why Doctors are being negligent with their patients? Yes, as human beings we all are condemned to die, but no one should die the day before! Lyme disease is a deadly condemn due to the lack of care. Patients are left to die immobile in pain, in a mental cloud; everyone think they just got old and it's their time. Old at 35, at 65 or at just five years of being born? weird cases ah? The funny are the ones like me, they easily think we are menopausal; so easy to diagnose. Who cares for a patient in pain? and who cares for a patient with multiple pains and mixed illnesses? BUG OFF!

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!

LYME BUG SURVIVOR!

What is that illness that causes multiple symptoms, including many very dangerous debilitating ones, that many people suffer,- specially in North America- but most of the Doctors deny and don't know what it is and how to treat? Ok, lets not call it LYME, so how should we call it? "The Bug"! I got the BUG and it has changed my life to the point I have no life now! I know I have the bug because when I take antibiotics the bug debilitates; when I do not take antibiotics or stop taking them I debilitate; simple! Oh, this "reasoning" seems not to be logic for the last Doctor I saw; he said that the antibiotics were not working because I relapsed every time, so "it had to be a virus". Again Doc, if it is a virus it won't have an initial response to the antibiotics, oh well, there will be no response at all, come on! (and that goes for you too family Doctor who said it could be an allergy "because allergies affect you women so hard!" and then when he saw my miserable face he said "if I'm wrong I'm wrong.." yeah you are, you were, terribly wrong and negligent!) Survivor, how? Using antibiotics for longer terms - as long as I can buy them somewhere else; or as long as I can make them last. I responded to Ciprofloxacin, but the herx is so strong; responded somewhat to cephalosporin; responded to Amoxacillin, and Zytro; also had some strange response to Doxiclor and Levofloxacin; and had amazing results when I took Plaquenil and Amoxacillin with Sulbactam. This mix called "Unasyn" - in the US, and just comes in injections in this country it is also called Sultamicillin in other countries and do come in pills- combines Amox with Sulbactam and voila, for some reason after more than 15 days I can have happy, even called “glorious days”!!! EVERY DAY, ANYTIME I CAN, I PRAY AND HOPE THAT MANY SUFFERERS LIKE ME CAN HAVE THESE GLORIOUS DAYS! IS THERE ANY DOCTOR OUT THERE? I KNOW MONTGOMERY DOCTOR IS THERE, AND THERE'S MY DOCTOR WHO LIVES FAR AWAY IN SOUTH AMERICA - DR QUINTERO - BUT,ARE THERE SOME OTHERS WILLING TO REALLY HELP? HOPE YES! God bless.