tag:blogger.com,1999:blog-55890135418645332722024-03-13T18:18:09.456-07:00Tick SoupLasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-5589013541864533272.post-3615243435587942212010-10-09T04:40:00.000-07:002010-10-09T06:25:35.077-07:00Hallelujah<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://4.bp.blogspot.com/_UdTSFbJ2s6g/TLBtRx3yNxI/AAAAAAAAAtw/6uHLa1wstG8/s1600/090213115016.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 300px; height: 382px;" src="http://4.bp.blogspot.com/_UdTSFbJ2s6g/TLBtRx3yNxI/AAAAAAAAAtw/6uHLa1wstG8/s400/090213115016.jpg" alt="" id="BLOGGER_PHOTO_ID_5526036894996117266" border="0" /></a><br />Click on below to read breaking news story...<br /><br /><a href="http://www.cbsnews.com/8301-504763_162-20019086-10391704.html"><span style="color: rgb(0, 102, 0); font-weight: bold;">SCIENTISTS UNRAVEL GENOME SEQUENCE IN LYME DISEASE</span></a>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-21055776062251916242010-07-01T12:27:00.000-07:002010-07-01T13:12:17.257-07:00Another Piece of the Puzzle<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://www.google.com/imgres?imgurl=http://www.jawjointpainrelief.com/joint_diagrams.jpg&imgrefurl=http://www.jawjointpainrelief.com/what_is_TMJ.asp&usg=__ro1NUV2Pa9vDxphj7PrvpuAwb78=&h=390&w=415&sz=62&hl=en&start=8&sig2=9K8x8Xdkh4xzKDEFQiEtYQ&um=1&itbs=1&tbnid=8OYNUQo2iWh_6M:&tbnh=117&tbnw=125&prev=/images%3Fq%3DTMJ%26um%3D1%26hl%3Den%26safe%3Doff%26sa%3DG%26tbs%3Disch:1&ei=ZuosTJinHMKblgf10bC_Aw"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 146px; height: 320px;" src="http://3.bp.blogspot.com/_UdTSFbJ2s6g/TCzy5ue-fuI/AAAAAAAAAtE/Cq8MtZB4mYw/s320/TMJ+functions.gif" alt="" id="BLOGGER_PHOTO_ID_5489029119402213090" border="0" /></a><br /><span style="color: rgb(0, 102, 0);">I have had TMJ ( or TMD ) for years . What is TMJ ( TMD) exactly ? A pretty good basic description is provided above . Just click on the picture .</span><br /><br /><span style="color: rgb(0, 102, 0);">I have a moderately severe case , which has only worsened since my Lyme infection . It would stand to reason as Lyme & Co-infections love to attack the joints and soft tissues of the body.</span><br /> <span style="color: rgb(0, 102, 0);">I initially think a rather severe car accident where i was hit head-on by a jeep that swerved out of its lane and into my Honda was what kicked it into high gear . I was rear-ended about a decade later on the Boston Turnpike by a kid who was texting in heavy stop and go traffic. Two NASTY cases of whiplash later and i had a chronic pain situation .<br /><br /> I had a dentist , chiropractor , neurologist , massage therapist and an acupuncturist all work on my TMJ issues over the years . All offered some measure of relief in varying degrees of success - at least to the point where i learned to live with it and be fairly functional , albeit with an abnormal amount of head/neck aches on a frequent basis.</span><br /><br /><span style="color: rgb(0, 102, 0);">The last few years it has gotten much worse and the pain has become intolerable. I just felt i had run out of feasible options . Surgery is out of the question as it has a very low success rate and i tend to be anti-surgery in the head/neck/back area unless one is completely immobilized and even then i think you should try other options first. Too much risk of nerve damage and not much improvement for the amount of trauma. My burnt out immune system and adrenals couldn't handle another surgery anyway . So what to do ?</span><br /><br /> <span style="color: rgb(0, 102, 0);">I had thoroughly researched dentists for someone who was state of the art and more holistically inclined for Colin and a few TMJ specialists kept popping up - so i looked into them , too.</span> <span style="color: rgb(0, 102, 0);">It just so happens that the dentist i really liked for Colin has pioneered a new method for TMJ patients which he himself suffered from for many years. It caused him to go in a new direction in Dentistry and to further educate himself on less-invasive and healthier dentistry as a whole.</span><br /><span style="color: rgb(0, 102, 0);">He became my dentist , too and on my third visit ordered an MRI after a lengthy interview .<br /><br /> It revealed that i had displaced discs on both side of my jaw - the right side much worse than the left . I have joint deterioration , worse on the right and 'adaptive arthritis' which curved my bone to prevent it from poking into my brain. WHOA. Having a hunch is one thing but having visual proof is another thing ! No wonder i have been in so much pain. So , once again , i have decided to place my trust in a pioneering doctor to try and heal what is still sick. A BIG leap of faith for me .</span><br /><br /><span style="color: rgb(0, 102, 0);">I trust him implicitly - he spent over an hour with me going over the mechanics of TMJ , connecting all of the dots and providing me with a lot of insight into how my TMJ has been slowing my progress in healing. He offered me several options for treatment and i chose his the method he developed with temporary orthodontics that re-train the jaw to allow my displaced discs to slip back into place. Being in constant pain drains your adrenals as they are constantly in 'flight or fight' mode , excreting cortisol and eventually not working at all. The endocrine system gets thrown off balance and hormones , thyroid , immune system - all can be compromised. Then the sympathetic nervous system kicks in and vision problems , dizziness , etc can start to occur. This explains the come-and-go nature of my remaining symptoms .</span> <span style="color: rgb(0, 102, 0);">Lyme cause all these things or can make them worse but it not always an active Lyme infection that is the culprit. After you get the beast under control , it is important to address the damage left in its wake and start working on rebuilding your bodies systems. That is my new goal.</span><br /><br /><span style="color: rgb(0, 102, 0);">My insurance has denied anymore medication to treat my Lyme or Co-infections - even though i still have bloodwork that confirms the existence of at least two of these infections. SO ...</span> <span style="color: rgb(0, 102, 0);">it is on to PLAN B . I will be taclking the TMJ , then the Endocrine system and pursuing Herbal remedies for my passive infections . Samento & Banderol here i come ! One more fly in the ointment ~ My Epstein - Barr Virus has been re-activated since my Lyme infection so i will be addressing that , too. An ever uphill battle but one that i am fully engaged in and committed to winning. Stay tuned for progress !</span> <br /><br /><span style="color: rgb(102, 0, 204); font-weight: bold;font-size:85%;" > * i also want to dedicate this latest post to my beloved cousin V. who so generously supports my quest for health in more ways than one . I love you so much.</span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com2tag:blogger.com,1999:blog-5589013541864533272.post-59859578288562338752010-05-14T16:36:00.000-07:002010-05-14T16:38:06.585-07:00May is Lyme Disease awareness month : Help Spread the Word<object width="640" height="385"><param name="movie" value="http://www.youtube.com/v/oXhFzyXPX4U&hl=en_US&fs=1&"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/oXhFzyXPX4U&hl=en_US&fs=1&" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="640" height="385"></embed></object>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-34180263043593986812010-04-26T09:56:00.000-07:002010-04-26T11:07:57.312-07:00BLACK THURSDAY : Bad News but No Big Surprise<span style="font-weight: bold; color: rgb(0, 153, 0);">C</span><span style="color: rgb(0, 153, 0);">onsidering the politics, greed and ignorance behind the current Lyme Disease debate , is it any wonder the IDSA refuses to consider any 'evidence' outside of their own biased research or listen to the thousands of LD sufferers, ground-breaking research or brave or concerned Physicians who put their patients before the almighty dollar in order to try TRY to help their patients ??<br />Um , NO.<br />But it is supremely disappointing . And maddening that they can get away with it. With doing NOTHING.<br />There were many first hand testimonies available , both children and adult , the Physicians who treat them and the researchers who keep pushing to find an answer when no one else will. Why are we being ignored ?<br />We are out there.<br />Waiting.<br />No , antibiotics are not a 'cure'. Not for 30 days - not for years. No one is really saying that- we are making progress in some treatments but there is no one answer.<br />One thing is certain - it HELPS, It makes some of us better . It puts some of us in 'remission' so we can get on with our lives. It saves some of our lives by at least stopping the disease from progressing out of control. Since no one else has any better alternatives at the moment and lives are being ruined - why not let Doctors try and help their patients have a better quality of life ? We know the risks and those of us who choose to try long-term antibiotic therapy should have that choice.<br />Teenagers are routinely put on some of the same antibiotics for ACNE- for years ! What about those 'risks ' ?? Lyme Disease can stop your heart ! What is more worthy of a risk - unsightly zits that you eventually outgrow or a potentially life-threatening illness ? Fuzzy logic abounds.<br />What is never discussed at these 'forums' is the fact that BIG PHARMA ( linked to more than several members of the IDSA board ) own PATENTS on Lyme Disease. They want to hold the rights and the profits for a vaccine someday. Their last attempt failed when it was shown to CAUSE Lyme Disease in its first takers. They pulled Lyme-Rix and cited " Poor Sales" as the reason. The likelihood of a vaccine that would protect anyone from the dozens of Lyme strains that exist ( and quickly mutate into several forms ) is not only unlikely but most likely impossible and it would be useless against the hundreds of possible co-infections that ride along with the Lyme bacteria. So why not let research and trial and error continue among those of us who do care to find a CURE ? Not interested ? Then the rest of the Medical establishment can go back to trading stocks in Pharmaceuticals and prescribing anti-depressants ( that don't work) to the millions of undiagnosed disease sufferers out there. Some of us want REAL answers .<br />Obviously , IDSA is not interested in the truth.<br />As Lyme Sufferers , we just want to be well again and prevent this hell from happening to others. We deserve the right to search out and procure the healthcare that HELPS us , not to be silenced in the face of such a debilitating and poorly addressed health issue. We will not let you get away with being silent , either. I urge everyone to write to Atty. General Blumenthal and let him know he needs to call the IDSA on their blatant disregard for public health and safety until they admit there is much more to learn before administering a 'Final Word' decree that could endanger thousands of lives.<br /></span><span style="color: rgb(0, 0, 0); font-family: Verdana,Geneva,Arial,Helvetica,sans-serif; font-size: 10pt;font-family:Verdana,Geneva,Arial,Helvetica,sans-serif;font-size:85%;color:#000000;" ><span style="font-size: 18pt;"> </span></span><span style="color: rgb(0, 153, 0);"><br /></span><a href="http://www.lymediseaseresource.com/wordpress/idsa-creates-black-thursday-for-those-suffering-with-chronic-lyme-disease/"><span style="font-weight: bold; color: rgb(0, 153, 0);">IDSA Create's Black Thursday for Chronic Lyme Disease Sufferers</span><span style="color: rgb(0, 153, 0);"> ~</span></a><br /><span style="color: rgb(0, 153, 0);">PLEASE click above to follow link to read article.</span><br /><br />From CALDA :<br /><span style="color: rgb(0, 0, 0); font-family: Verdana,Geneva,Arial,Helvetica,sans-serif; font-size: 10pt;font-family:Verdana,Geneva,Arial,Helvetica,sans-serif;font-size:85%;color:#000000;" ><span style="font-size: 18pt;"><span style="color: rgb(0, 0, 0); font-family: Trebuchet MS,Verdana,Helvetica,sans-serif; font-size: 14pt;"><span style="color: rgb(0, 0, 0); font-family: Trebuchet MS,Verdana,Helvetica,sans-serif; font-size: 14pt;font-family:Trebuchet MS,Verdana,Helvetica,sans-serif;font-size:130%;color:#000000;" ><span style="font-size: 18pt; font-weight: bold; color: rgb(0, 102, 0);font-size:100%;" >Why we all need to contact AG Blumenthal now </span><br /></span></span></span> </span> <span style="color: rgb(0, 0, 0); font-family: Verdana,Geneva,Arial,Helvetica,sans-serif; font-size: 10pt;font-family:Verdana,Geneva,Arial,Helvetica,sans-serif;font-size:85%;color:#000000;" > <span style="font-size: 12pt;">The review process for the 2006 IDSA Lyme guidelines came about because of a Settlement Agreement with Connecticut Attorney General Richard Blumenthal. But the IDSA didn't follow all the procedures laid down in that agreement. If they had, one of the worst of the guidelines would have been thrown out. The recommendation in question requires that a patient have a positive Lyme lab test in order to be diagnosed with Lyme disease. Since Lyme lab tests are notoriously unreliable, this requirement denies appropriate diagnosis and treatment to untold thousands of patients with Lyme disease.<br /><br />Lyme Disease should remain a clinical diagnosis . Like many other diseases , tests are used only as a tool for additional confirmation .<br /><br />Contact AG Blumenthal and tell him you want him to make sure the IDSA follows all the rules. The lives of Lyme patients and their families are at stake.<br /><br />If you can, please fax the AG. If no fax, email or call.<br />(860) 808-5387 Fax<br />(860) 808-5040 Phone<br />email:<a rel="nofollow" style="color: blue; text-decoration: underline;" ymailto="mailto:attorney.general@po.state.ct.us" target="_blank" href="mailto:attorney.general@po.state.ct.us" shape="rect"> <span class="yshortcuts" id="lw_1272304944_2">attorney.general@po.state.ct.us</span></a></span></span><br /><span style="color: rgb(0, 153, 0);"><br /></span><br /><br /><span style="color: rgb(0, 153, 0);"><br /></span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-27373058052966767812010-04-14T13:32:00.000-07:002010-04-14T14:08:56.530-07:00Mepron Redux<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_UdTSFbJ2s6g/S8YuyiD0_aI/AAAAAAAAAs0/2P0nAlLyTR8/s1600/6016_126663036477_599366477_2994785_284947_n.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 399px; height: 400px;" src="http://3.bp.blogspot.com/_UdTSFbJ2s6g/S8YuyiD0_aI/AAAAAAAAAs0/2P0nAlLyTR8/s400/6016_126663036477_599366477_2994785_284947_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5460103043904503202" border="0" /></a><br /><span style="color: rgb(0, 153, 0);font-size:130%;" >Well , Spring is here and with it my latent Babesia has flowered.<br />I have been having so many symptoms again that it gets confusing but my recent blood work confirmed Babesia WA1 is still there. That would explain the skull-crushing migraines and killer joint pain i have been getting again.<br />This strain is supposedly a West coast strain but is now found all over the continental US.<br />It is a particularly stubborn bug and hard to eradicate. My previous 5 month stint with Mepron<br />( an antimalarial drug used for other blood parasites to varying degrees of success ) Zithromax<br />( which is supposed to increase Mepron's effectiveness )and quarts of Fevertree tonic and bitter lemon ( contains Quinine ) last summer seems to have reduced the overall load in my body but not enough to effect a cure. Considering how diligent i was , this is disappointing on a grand scale.<br />The goopy yellow stuff is tremendously expensive and i am not looking forward to a repeat.<br />I am going on a higher dose this time , adding Haritaki , an Ayurvedic herb that breaks down biofilm( the protective coating bacteria, viruses , parasites make to protect themselves from harm) and Artesunate at some point ( what W.H.O. has recently endorsed as the most effective Malaria cure ) And i wanted to wean myself off meds this summer . Ha.<br /><br />The real issue is NO ONE knows how to cure these new strains of disease that are showing up and proliferating like mad. And they all seem resistant to the old guard of medicines that are being thrown at them. It really is all just a grand guignol experiment.<br />I really believe that there is a remedy or cure out there in Nature somewhere for every natural disease or pathogen. Except some of these things have been hatched in labs and genetically modified . Once escaped back into nature they radically alter themselves , mutating into Super-Bugs that don't respond to modern medicine. Or ancient medicine.<br />Lyme Disease has existed for Eons but newer strains are much more virulent and harder to eradicate. BORELLIA, MRSA , MARCONS, WEST NILE VIRUS, AVIAN & SWINE FLU all of these have been tinkered with or created in labs. Some from decades ago when our country (and others) had officially sanctioned Biological Defense Programs . These "experiments " , once out into the population mutate further , causing epidemics we are hardly prepared for .<br />We have created a monster.<br />Don't believe me ? Read </span><span style="font-style: italic; color: rgb(0, 153, 0);font-size:130%;" ><span style="font-weight: bold;">Lab 257 </span></span><span style="color: rgb(0, 153, 0);font-size:130%;" >by Michael Christopher Carroll . Meticulously researched and eye-opening. It gives you a lot to think about .<br />But i digress.<br />i am but an unwitting victim of fate and circumstance. I am just trying to understand it all.<br />I just want to be well .<br />So , on i fight. Bring on the Mepron ...</span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-9303664411522787232010-03-02T09:38:00.000-08:002010-03-02T12:58:43.990-08:00A Year later...<span style="color: rgb(0, 102, 0);font-size:100%;" >Well , that time has come. It is my one year 'anniversary' of REAL Lyme Disease treatment - the date i had my first appointment with my much cherished LLMD in Rockville Maryland took place in March of 2009 after a grueling six months of unexplained and frighteningly progressive illness. I wish i could report that i am 'all better' but i am afraid it is much more complicated than that.<br /><br />I was diagnosed by my primary doctor , given the 30 day 'cure' of Doxycycline and remained sick - in fact worse. I have had a year of pulsed anti-biotic use with a 5 month break in between - a period of time where i started to feel almost 'normal ' again , albeit with some nagging , malingering reminders that all was not well - but exponentially better than i had been in a year's time. I was feeling pretty good , all things considered.<br /><br />My doctor was not satisfied with letting sleeping dogs lie , however . He felt it was too risky to let my infections off the hook before we really used the full arsenal to lower the load on my body. Partial remission was a good sign but he wants to push through to effect a true remission - one with a stronger immune system and less microorganisms to multiply when no one is looking.<br />I reluctantly agreed , having come to enjoy about 70% of my health again. I wanted to just move on , be in a form of denial about the realities of this disease and put it all behind me . It has literally been a year and 1/2 of HELL. I wanted my body and my life back .<br />He convinced me that i wasn't ready , yet. My blood work still had some issues and i did admit , i still had symptoms that wouldn't go away no matter how diligent i was with my diet, herbs and infra-red. I was still carrying too much inside of me to go it alone .<br /><br />I caved and filled the scripts for Rifampin and Azithromicin this time to target the sleeping dog of Bartonella , while reducing the Lyme load . Next is good ol' Mepron again. I took it faithfully for 4 months and the symptoms of Babesia all but disappeared. I thought i had beat at least THAT one. Unfortunately , i have the strain Duncani that doesn't respond to the typical Malaria drugs used to treat the most common strain of Babesia. I even argued with my doctor that i hadn't any more signs of it . That was about to change.<br /><br />Sure enough , about a week into the Rifampin & Zith mix , all hell broke loose again. My bladder was the first to act up , then the night sweats came back , the nightmares, chest pains , costrocondritis ( rib pain ) , skull-crushing migraines unlike any other headache on earth .<br />I am having severe bone pain again that causes me to wake with a cry .<br />Bartonella and Babesia - still there after all this time . It is so debilitating , so depressing . I feel like i have been fighting this for years upon years , yet my doctor reminds me his basic treatment protocol is 18 months , minimum. I am only 12 months in , 5 months off anti-biotics . I have been on an herbal and homeopathic protocol to give my body a break form abx. Only ! a year of various treatments.<br />It still feels like a lifetime to me.<br /><br />My LLMD is patient and kind. He quietly reminds me that Tuberculosis , Malaria and Syphilis<br />( similarly tenacious infections ) take a year or longer to 'push back' so one's immune system can rehab itself to take over for the medications. It is all about reducing the load. No known true 'cure' in sight. What most doctors will tell you is that you are cured when you are actually in remission. These things never truly go away- they behave more like viruses. They can be tamed but they are still wild on the inside .<br />Not what we want to hear , but the truth , nonetheless.<br />My body tells me the truth , too.<br /><br />This new round of meds has awakened everything. I am in pain again and i am aware of how truly serious Lyme Disease can be. I wasn't one of the lucky ones who caught it immediately.<br />So i will not see my health return quickly , either. Simple equation , right?<br />It is incredibly scary how resilient these microorganisms are . But so am i. I can fight back and i will continue until i can reclaim the landscape of my body once more. To feel 70% ok , most of the time, is not really enough for me, not if i am honest with myself. When i suffer a relapse it is like starting at the beginning again. I need to be stronger to maintain my health the way i really want to. So we are on Round Two. It hasn't been easy.<br />I am still learning to be patient and continue to work with my body . I am painfully aware that i am not 'there' yet.<br /><br />I am still fighting.<br /><br /></span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com2tag:blogger.com,1999:blog-5589013541864533272.post-10269766964976653442009-10-15T19:02:00.000-07:002009-10-15T19:12:21.870-07:00Important Article on Emerging Infections and 'Unknown Cause' Chronic Illnesses<span style="text-decoration: underline;"><a href="http://www.sciencenews.org/view/generic/id/48157/title/Retrovirus_might_be_culprit_in_chronic_fatigue_syndrome">Retrovirus discovered in patients with Chronic Fatigue Syndrome</a><br /><a href="http://planetthrive.com/2009/10/from-chronic-fatigue-to-lyme-medically-unexplained-no-more/">Pam Weintraub - Author of Cure Unknown writes about Patient Abuse</a><br /><br /><br /></span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-11342403507905501512009-08-14T19:54:00.001-07:002009-08-14T19:54:16.648-07:00A Rambling RevelationI guess all along ( since my diagnosis in March 2009) i have had some inkling or understanding that i may have had this disease ( Lyme Disease and / or co-infections ) for a very long time - much longer than my recent tick experience would suggest. I had even discussed this with my LLMD in my first visit . We discussed it again recently.<br />We were going over some of my current issues and went back over my early health history .<br />I had one of those blazing 'lightbulb' moments of " HOLY CRAP ! " i have HAD this for more than 30 !!!! years . Yes , i was re-infected recently - that i know for certain but some , if not all of this was on board for a very long time. ( i think the Babesia is the only real 'new' one. )<br />In my recent LLMD appointment we went over my Bartonella flare since this seems to be the main culprit right now and i realized ( as i was adding up my current symptoms ) that many of the SAME symptoms have appeared and re-appeared over the years since i was 13 years old . I had a stray kitty that we had adopted and she was vicious in the beginning , scratching me repeatedly etc . until i tamed her and she became my best friend. It is very likely she infected me first.<br />I had strange rashes.<br />I developed strange , red, angry " stretchmarks" on my hips and upper thighs. (I was 95 lbs at the time.)<br />I had terrible migraines ( my grandfather passed away so maybe it was stress )<br />They were bad enough for my doctor to suspect a brain tumor, though.<br />I had several Cat-scans, MRI , etc . Nothing.<br />Stress.<br />They went away only to come back , intermittently over the years.<br />I got conjunctivitis alot , recurrent bladder infections , strange rashes, emotional outbursts . I was a teenager . Normal , right ?<br />All the doctors made me think so .<br />I had Mono ( Epstein -Barr virus ) so bad i was hospitalized overnight.<br />I always got tired easily after that. They administered steroids.<br />I would get "sun poisoning" on my chest when i went out in the sun .<br />I cried alot , threw 'fits' . Had strange nightmares. Migraines and neck pain persisted.<br />My periods were so heavy i had to stay home from school.<br />I never felt 'normal'.<br /><br />I am SO ANGRY. No one ever thought to test me for Lyme disease , i was outdoors all of the time , hiking , camping , playing forts in the woods growing up , frolicking through fields and beach grass without a care in the world.. I was bit by spiders, ticks, mosquitos , fleas - you name it . Constantly . I was sick a lot.<br />Then I got cervical cancer in my early twenties, - had a good patch for about five years when i got ' health concious ' and became a vegetarian and organic only consumer. I took probiotics , practiced yoga , took vitamin c . I built a stronger immune system.<br />Then i went through a very stressful period with work and love and i started getting sick again.<br />I had fibrocystic breast tumors , ovarian cysts, uterine fibroids. Depression , ADHD, exhaustion. Neck issues and migraines continued.<br />Years passed- i guess i am aging early...<br />A pregnancy plagued by pain and illness. My son almost died . I almost died . A year later - hysterectomy.<br />Now i worry about his health - which is like a ticking time-bomb waiting to explode. He is healthy now but what if ? This thought haunts me. I don't want to miss anything, like i was missed. I also don't want to be one of those scary , over -protective germ-phobic mothers , either . So i wait and i watch , like a CIA operative.<br /><br />No one EVER questioned ANY of my health issues .<br />I suffered off and on for years with no explanation.<br />Just tests picked out of a hat , pills and being brushed off when i couldn't be helped or 'solved'.<br />WHY didn't anyone know or suspect ???<br />BECAUSE NO ONE KNOWS .<br />I am making it my mission to help educate people on the truth behind the 'spin'.<br />I will no longer stand silent and help perpetuate a lie.<br /><br />The fact that i have possibly been suffering in silence for YEARS is even worse .<br />I am just so angry , and i am trying to come to grips with this idea.<br />i know many , too many of you can relate.<br />I am not 'special' , i am one of thousands who are only now ( if they are lucky (unlucky ? ) finding out why their life has been filled with unexplained health problems.<br />Multiple exposures are not only possible but highly likely . A strong person's immune system can fight back a lot of infection . Many of us ( most of us actually ) have viruses and bacteria that we live with and never cause us much of a problem. Until your immune system is compromised by stress, poor health , surgery or another illness - you may never even know it. We are only tested and treated when something goes wrong . This , in my opinion is definitely part of the problem with medicine in the US - we do very little in terms of preventative care which would make everyone a lot healthier and happier . Except Pharmaceutical companies , of course .<br />And they have their hands in everyone's pie. but THAT is another discussion , altogether. ; )<br /><br />So , i got a tiny little tick bite last summer ...<br />And that may have just been THE STRAW THAT BROKE THE CAMEL"S BACK .<br />My world has changed forever.<br />It is that realization that has me floored, still.<br />I just cannot get over it.<br />It is a lot to process when one is already ill .<br /><br />I do not want my child or anyone else to go through what we are going through .<br />It is just too much to ask .<br />I am still in shock that i didn't know ANY of this just a few short months ago .<br />Hard to believe .<br />And i like to think of myself as an informed human being .<br />I was lied to . We all were .<br />In the 'information ' age , to boot.<br />Thank you for hearing me . I just needed to tell someone - everyone - how i am feeling . I am strong - i am a survivor . But i still hurt .<br />And tonight , i am really hurting as i mourn the loss of that thirteen year old girl who loved nature and animals and the world and it didn't love her back the way she thought it would.Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com3tag:blogger.com,1999:blog-5589013541864533272.post-46944873085790727282009-08-10T11:16:00.000-07:002009-08-10T11:43:45.695-07:00A Patent Lie - The IDSA Hearings and the truthThe IDSA hearings in Washington DC<br /> (forced by the anti-trust lawsuit brought on by the courageous Attorney General Blumenthal of Connecticut )have come and gone recently.<br />Most people didn't even hear about it.<br />I lamely posted it on Facebook and Twitter hoping to spread the word.<br />It would have been nice to see it on the evening news .<br /><br />These hearings were an important first step in recognizing the threat this seemingly<br />innocuous disease actually has become. It is a complicated and evolving form of bacteria that is easily transmitted and not easy to eradicate once it finds a home inside a human host.<br />The percentage of people who catch it early enough to have effective treatment is dwindling.<br />There are many new strains and they are constantly evolving and adapting . new co-infections have been discovered - viruses , bacterium and parasites that complicate treatment and complete recovery. This is NOT the simple disease the IDSA wants you to believe it is.<br />Many , such as myself and my husband are left with lingering and myriad health problems.<br />Some of which can prove fatal. People have died from Lyme Disease - it usually is listed as<br />Heart failure , stroke or other maladies but many are the result of long-term undiagnosed or under-treated Lyme Disease and co-infections. A recent Yale study revealed that 90% of a sampling of brain tissue from Alzheimer victims contained <span style="font-style: italic;">Borrelia Burgdorferi </span>, the bacteria that causes Lyme Disease. This has been seen in those diagnosed with ALS, MS , Bi-Polar Disorder , Lupus , Chronic Fatigue Syndrome and Fibromyalgia as well as many other ' unexplained' illnesses. The evidence is mounting and so are the statistics.<br />When there are too many of us , change will come.<br />But what do we do in the meantime when a handful of powerful organizations have hog-tied honest researchers , scientists , doctors and patients who have little to gain from their greed and underhanded censorship ?<br />What do the sick do until then when the easy cure '30 days of doxycycline' fails us ?<br />The Hearings were important but nothing has really changed. Yet.<br />Lyme Disease is epidemic in the continental US the health of thousands are at stake and it seems no one cares . Will anything even come of it ?<br />The IDSA heard much testimony , including scientific research it had previously refused or banned . Many dissenting viewpoints were heard ( finally ) but this was not a public forum - the IDSA closed it to the public and media . What does this tell you ?<br />I do not have much hope when the greater public at large is purposely kept in the dark.<br />This includes well intentioned physicians and health care policy makers.<br />If the word does not come on down from on high - we will continue to be mis-diagnosed , mis-treated and ignored.<br />The public is purposely kept in the dark about many illnesses that have patents on them ! This seems ludicrous but i assure you it is true. What's the saying ? " Follow the money "...<br /><br />No one knows because important information and scientific study is being suppressed by those who have a financial interest ( and hold patents on disease) for a vaccine. If more than one strain exists , if it can hide in the tissues , change form , exist with co-infections than a LYME DISEASE VACCINE WILL NOT WORK ! The public would reject it and all that money and research slotted for it would be lost profit . The first vaccine in the eighties- Lyme Rix was a bomb - it actually caused Lyme Disease in some of the public and was quickly pulled off the market under the PR spin of<br />" poor sales" . A form of it is still being used on Dogs. A 'salvage'operation?<br />Flu vaccines run some of the same risks - most people get them without question- whether they are risky or actually effective doesn't seem to matter .<br />We SHOULD question why .<br />The government and its institutions like the NIH do not have our best interests at heart even though they were set up supposedly for that very reason . Big business has gotten a hold on every corner of the research dollar . Big Pharma IS Big Brother .<br />Then there's chronic illness and the healthcare system . Don't even get me started ...<br />NO ONE wants to pay for it. Long-term treatment for anything is greatly frowned upon.<br />Private insurance rejects you , HMO's deny claims and paying out of pocket is all that is left.<br />IF you can find a good doctor who is knowledgeable about tick-borne infections to treat you !<br />Even then it is precious little. Proper and effective treatment is in its infancy even though these<br />micro-organisms have been around for quite some time. We are all still just guinea pigs , even when good hearted doctors are trying to heal us and reduce our suffering - they are only guessing without the help of more research and the organizations that SAY they are protecting us.<br />The new Healthcare Reform , sadly, will do little to change this.<br />It is a start and reform is needed but a long way from securing health for the public.<br />Until you take the profit out of health care things will continue as usual , regardless how many more people are 'covered'. This is a truth many are not willing to hear.<br />Especially , the chronically ill .<br />We will be left out to go away and quietly suffer - again.<br />Maybe i am being overly cynical - God knows my outlook is less than rosy these days .<br />There is no turning back after the fog lifts , that i know .<br />I wish in some ways i were still ' naive ' .<br />Ignorance is bliss and all that .<br /><br />In reality , i am praying and hoping that something , anything will change .<br />We have to start somewhere .<br />I have to keep that hope alive , somehow.<br />For my son .Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-16260126968978194612009-05-28T15:45:00.001-07:002009-05-28T16:22:22.879-07:00When Life Gives You Lemons...<div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://3.bp.blogspot.com/_UdTSFbJ2s6g/Sh8UQDH9LfI/AAAAAAAAAss/5DjgOFD2UIE/s1600-h/IMG_1226.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 400px; height: 285px;" src="http://3.bp.blogspot.com/_UdTSFbJ2s6g/Sh8UQDH9LfI/AAAAAAAAAss/5DjgOFD2UIE/s400/IMG_1226.JPG" alt="" id="BLOGGER_PHOTO_ID_5341009949033836018" border="0" /></a><span style="color: rgb(102, 102, 0); font-weight: bold;font-size:130%;" ><span style="font-family:lucida grande;"><span style="color: rgb(102, 102, 0);"><span style="font-weight: bold;"><span style="font-size:85%;"> <span style="font-style: italic;">Living with Lyme Disease Series # 1</span><br /> </span></span></span></span></span><span style="color: rgb(102, 102, 0);font-size:130%;" ><span style="font-family:lucida grande;"><span style="color: rgb(102, 102, 0);"><span style="font-size:85%;">Susan Schaeffer 2009 -all rights reserved</span></span></span></span><br /></div><span style="color: rgb(102, 102, 0); font-weight: bold;font-size:130%;" ><span style="font-family:lucida grande;"><span style="color: rgb(102, 102, 0);"><span style="font-weight: bold;"><span style="font-size:85%;"><br /><br /></span></span></span>I am painting again.</span><br /><span style="font-family:lucida grande;"> It started as a thought , then an action.</span><br /><span style="font-family:lucida grande;"> I have dreamed for years of trying my hand at encaustic painting - as a viable way to combine my love for various mediums and be able to work with the luminous , multi-layered effects of wax. It is an old media<br />( more than 2500 years old ) yet can be used in so many glorious and inventive ways that it is thoroughly modern , too .</span><br /><span style="font-family:lucida grande;"> It has the immediacy of Sumi painting and the Old World glow of the ancients , layers of luminosity and depth , it is scrapeable , sculptable, and allows for many 'happy accidents' - a zen quality i love and appreciate.</span><br /><span style="font-family:lucida grande;"> I am hoping to eventually combine photos, painting, drawing and collage elements in order to achieve the true melding of all my interests and achieve a cohesive style that is uniquely my own.</span><br /><span style="font-family:lucida grande;"> I don't know why i waited so long to do this . I am just glad that i am doing it now.<br />Could it be some good will actually come out of all of the suffering ?</span><br /><span style="font-family:lucida grande;"> I'd like to think so .</span><br /><span style="font-family:lucida grande;"> That's why i decided to start with a series of Lyme Disease paintings - to help me work through my struggle , to try and find beauty in the ugliness and to make peace with what is beyond my understanding or control. This is my first work . I hope to be able to work on many more in the coming months. </span><br /></span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com2tag:blogger.com,1999:blog-5589013541864533272.post-12334917451024203392009-05-21T07:14:00.000-07:002009-05-21T07:17:20.775-07:00The Truth is out there .<object height="344" width="425"><span style="color: rgb(0, 102, 0);"><span style="font-family: lucida grande;"><span style="font-size:100%;">In Baltimore news -<br /><br /><br /></span></span></span><param name="movie" value="http://www.youtube.com/v/tzs4Gf_evRQ&color1=0xb1b1b1&color2=0xcfcfcf&hl=en&feature=player_embedded&fs=1"><param name="allowFullScreen" value="true"><embed src="http://www.youtube.com/v/tzs4Gf_evRQ&color1=0xb1b1b1&color2=0xcfcfcf&hl=en&feature=player_embedded&fs=1" type="application/x-shockwave-flash" allowfullscreen="true" height="344" width="425"></embed></object>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-42139638014977851822009-05-14T06:54:00.000-07:002009-05-14T08:02:58.389-07:00May Flowers<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://2.bp.blogspot.com/_UdTSFbJ2s6g/SgwyjyYc8eI/AAAAAAAAAsk/O75in7CVtDw/s1600-h/asbmf.gif"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 320px; height: 257px;" src="http://2.bp.blogspot.com/_UdTSFbJ2s6g/SgwyjyYc8eI/AAAAAAAAAsk/O75in7CVtDw/s320/asbmf.gif" alt="" id="BLOGGER_PHOTO_ID_5335695248928338402" border="0" /></a><br /><span style="color: rgb(0, 153, 0);"><br />Well , today i hit my three month mark for Lyme Treatment. I have had this disease a long time - but </span><i style="color: rgb(0, 153, 0);">exactly</i><span style="color: rgb(0, 153, 0);"> how long is a mystery. After combing through my health history back to my childhood - there are some unexplained coincidental patterns to be found. Lyme can infect a person and with a healthy immune system can keep its ravages in check- until a immune system is overwhelmed and can no longer hold it at bay. Multiple exposures can add up to more problems as well as more virulent strains and the presence of co-infections. It is a complicated business.<br /><br />My LLMD believes the two surgeries i had in as many years and the stresses of having a child left my immune system in a compromised position , allowing for my latest exposure ( September 08) to completely wipe out my already struggling last defense. I got hit hard.</span><br /><span style="color: rgb(0, 153, 0);"> I have been terribly ill since October 2008 and wasn't diagnosed until February 2009 when i insisted on thorough bloodwork from my PCP. I knew something was terribly wrong. I even believed i had a 'parasite' of some kind.</span><br /><span style="color: rgb(0, 153, 0);"> My PCP is the one who called me with the results " I know why you have been so sick - you have Lyme Disease " . I didn't believe her at first. The first test was negative.</span><br /><span style="color: rgb(0, 153, 0);"> I started to read everything i could find on Lyme Disease. It started to all make sense, as all the pieces of my health's puzzle started falling into place. I remembered a tick incident in the late summer. A month later my health took a nosedive. It all started with the 'flu' . Sinus , ear, eye, upper respiratory and bladder infections followed.</span><br /><br /><span style="color: rgb(0, 153, 0);"> My Western blot came back positive and since that day there was no turning back.</span><br /><span style="color: rgb(0, 153, 0);"> I was given the standard 28 days of doxycycline but little changed. I have been to the allergist , the Infectious Disease doctors , the E.N. T. specialist and the Neurologist. I had EKG's , Scans and Ultrasounds. Nothing was 'structurally' wrong with me.</span><br /><span style="color: rgb(0, 153, 0);"> My PCP thought i still had Lyme Disease as nothing had changed except a few infections clearing up. She tried to get advice on how to treat me. No one offered. It was as if she hit a invisible wall. She was frustrated . I was mad. They weren't touching it with a ten foot pole. I was on my own .</span><br /><br /><span style="color: rgb(0, 153, 0);"> I continued to read all i could on the subject and decided it was time to go off the grid. I was lucky enough to find my LLMD through a referral - a woman i was aquainted with who is a Massage Therapist was working with another woman who was recovering from Lyme Disease after three devastating and crippling years of misdiagnoses. Her doctor after three short months was already reversing her paralysis and inability to speak. She pleaded with me to go see him before i got any worse. I called everyday , but he wasn't taking any new patients , being overloaded with Lymies from near and far. I kept calling. I got his wife on the phone one day and she patiently listened to my sob story - how i was dragging myself around the floor in afternoons trying to stay conscious so i could care for my toddler . My husband had fallen ill , too. We were drowning. She threw us a lifeline by taking our story to her husband and he agreed to take us on. I have been in treatment since March 2009.</span><br /><br /><span style="color: rgb(0, 153, 0);"> I was re-tested extensively and while the Lyme seems to be in hiding , i tested positive for Babesia Duncani and a Bartonella- like organism. This complicates matter but at least we know who the all the enemies are now.</span><br /><span style="color: rgb(0, 153, 0);"> I am at the three month mark and have seen remarkable improvement. 50% of my symptoms have all but disappeared ( i had roughly 38 marked symptoms , including most neurological symptoms associated with Lyme Disease) I regained my cognitive abilities to a great degree , pain was highly decreased, vision restored to almost normal , energy increased exponentially. I still have many 'issues' but i am definitely on the upswing . My LLMD remarked that my swift response to my protocol was ' a very good sign' and that we could step up treatment now</span><br /><span style="color: rgb(0, 153, 0);"> I am starting on Mepron tomorrow for the Babesia and my abx are being increased slightly , too. I am feeling very hopeful and happy with my progress. I have a long way to go but I feel very fortunate to have found such support and care in a relatively short amount of time.</span><br /><br /><span style="color: rgb(0, 153, 0);"> I can only pray that by making the public more aware of this insidious disease , more Doctors will become educated and will stand behind their patients to promote awareness and change in the current treatment guidelines. There are not enough Doctors who want to help us , let alone know how - more research and funding will only come if enough of us come together and insist on it. There seems to be a tide of awareness gathering power lately and this is a good sign, too. I am proud to be a part of it , if only in a small way, as i continue to fight for my health.</span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-42806818866125355502009-05-11T12:49:00.000-07:002009-05-11T12:52:32.688-07:00MS Diagnosis is common with Lyme Disease......and dangerous.<br /><br />Please watch this video<br /><br /><span style="font-weight: bold;font-size:130%;" ><a href="http://vimeo.com/2354218">MISDIAGNOSIS</a><br /><br /><br /><br /></span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-62213185621359331272009-05-01T09:50:00.000-07:002009-05-01T10:31:17.526-07:00My New Best Friend<span style="color: rgb(0, 153, 0);">No , it's not another co-infection ! ; )</span><br /><br /><span style="color: rgb(0, 153, 0);">I recently purchased a Richway Infra-red Bio-Mat for as a therapeutic adjunct to my current Lyme Disease protocol. I did some research on the ability of infra-red to immobilize and/or kill spirochetes and other bacteria , viruses , etc. It is very compelling and i would love if we could build an infra-red sauna and have it in our yard to try out this theory.<br />It looks as if that may be possible in the future but not at the current time so i decided on getting the BioMat instead.<br />The BioMat uses infrared heat within its core to cause a false 'fever' in the body which helps destroy Lyme & friends and then as you sweat - out go the toxins . That of course is an over- simplified version of what happens but it covers the basics. </span><br /><span style="color: rgb(0, 153, 0);">The infra-red heat which is EM-free helps to warm up your core , gets blood flowing, maximizes organ activity and flushes the system of toxins hiding out in the fatty tissues of your body . It heats muscles and joints and your skin stays amazingly cool ! Bottom line - it FEELS good.</span><br /><span style="color: rgb(0, 153, 0);">I hope it also does a number on the Lyme & Co. , too but in the meantime it feels like heaven.</span><br /><span style="color: rgb(0, 153, 0);">It's a win-win , as far as i am concerned.</span> <span style="color: rgb(0, 153, 0);">Everything used to treat this disease is ' experimental' at this point in time , unfortunately. As long as it isn't dangerous , i'll try it.</span><br /><span style="color: rgb(0, 153, 0);">So far so good - The BioMat is AMAZING !</span><br /><span style="color: rgb(0, 153, 0);">I have done several 'sweat' sessions and it is very similar to a sauna session, but easier.</span><br /><span style="color: rgb(0, 153, 0);">It eases the aches and pains and calms down the nerve endings - all a very real and persistent symptom of chronic Lyme Disease. I really feel refreshed after following up with a nice shower.<br /><br />You can also use lower heat setting for pain relief or help sleeping, too.<br />I found myself constantly arranging and re-arranging an oddball set of microwavable heating pads to my various 'sore' spots and needless to say this in itself was a pain . How much nicer is it to plug this mat in , set the temperature and lay down on it for however long i want or need to ?<br /> It wasn't cheap , but worth EVERY plastic penny .<br />I don't know if it is pure coincidence but i have felt a lot better the last few days.<br />I will keep you posted on its effectiveness .<br />Now , If you will excuse me i have a 'date' with Mat.<br /><br /><br />Learn more here :<br /><a style="font-weight: bold;" href="http://www.sciencedaily.com/releases/2007/11/071101084950.htm">The Science behind Infra-red technology used in Medicine</a><br /><a style="font-weight: bold;" href="http://www.sciencedaily.com/releases/2007/11/071101084950.htm">BioMat Health</a><br /></span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-21136669387875884112009-04-26T06:17:00.000-07:002009-04-26T06:22:07.272-07:00Comments<span style="font-weight: bold; color: rgb(0, 153, 0);">Hi Dear Friends and Family and other guests , too.</span><br /><span style="color: rgb(0, 153, 0); font-weight: bold;">Some of you have let me know that you have tried to leave comments but were unable to - i changed the setting so this should no longer be a problem .You can post on older posts, too so please try again if you had trouble in the past !</span><br /><span style="font-weight: bold; color: rgb(0, 153, 0);">Please feel free to leave comments , in fact i hope that you do - it lets me know someone is reading and cares ! Living with Lyme can be very lonely and isolating - people often feel awkward and don't know what to say . I don't 'need' anyone to say anything other than what is in their heart.</span><br /><span style="font-weight: bold; color: rgb(0, 153, 0);">Please feel free to express yourself - i love the feedback .</span><br /><span style="font-weight: bold; color: rgb(0, 153, 0);">It is good for my soul.</span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com2tag:blogger.com,1999:blog-5589013541864533272.post-21893510271800364742009-04-18T05:44:00.000-07:002009-04-18T06:14:56.565-07:00A New Day , New Visitors<span style="font-size:85%;"><span style="font-family:lucida grande;"><span style="font-family: trebuchet ms;font-size:100%;" ><span style="color: rgb(0, 102, 0);">I have been contemplating the poem posted previously a lot lately. It is my way of trying to come to some sort of peace with what has happened and is happening with my body since being infected with Lyme Disease. I was growing weary at being so angry all the time and railing against this disease so fiercely. I wanted it OUT . And i wanted it out NOW ! I was very close to being placed on a PICC line ( intraveneous anti-biotics for the uninitiated) and wanted to hit the Lyme HARD. As hard as needed to blast it out of my system. My PCP ( primary care physician) was at a loss as to what else to do. That is when i started in earnest for someone better versed in tick-borne infections. They are not easy to find - as politics and the powers that be have driven most LLMD's ( Lyme Literate Medical Doctors) into an off-the grid ( outside of insurance company control ) existence. They are fiercely protected by their patients - who they have so generously dedicated their time to helping with this difficult and controversial disease. They are our last hope if conventional treatment fails- which it almost always does if you are not treated within HOURS not days of an infected tick bite. It only takes several hours for the disease to disseminate through the human body - much less time than originally thought. Once disseminated , it becomes extremely difficult to eradicate completely . In fact most people well-versed in Chronic Lyme Disease believe that the most you can hope for is a remission of sorts . Not what i wanted to hear , but closer to the truth of this disease as i have now found out through exhaustive research and talking with many others who have battled this disease for months , years , and even decades. There is no easy cure .<br /><br />So that is where i ended up , with this sobering reality and a different game-plan. I have a very wise and learned LLMD who has put me on a protocol that begins with re-building my immune system brick -by-brick and using low dose -pulsed anti-biotics for a longer period of time. He has convinced me that a tough course of IV drugs would take my body down with the disease and give it a leg up , rather than destroy it completely . I didn't want to take the chance . Not yet. I know my body has been ravaged this past year - these past few years with multiple surgeries and illnesses . I need time to heal. Slowly.<br /><br />The New Visitors -<br />Recent bloodwork has revealed a few more ingredients in my already heavily spiced Tick Soup . I have Babesia Duncani, which invades red blood cells and a form of Bartonella , yet to be classified but seen crawling all over my once-healthy and now compromised red blood cells.This is not good news , to say the least but not unexpected. I have had so many symptoms , my LLMD was pretty sure i had someone else on board , too.<br />This , of course , makes my treament even more difficult because it is virtually impossible to get the upper hand with <span style="font-style: italic;">Borrellia </span>if there are co-infections present. You must get those under control first and then move to more aggressive treatment against the <span style="font-style: italic;">Borrelia</span>. Babesia is a protozoan organism that is alot like Malaria - causes some of the same symptoms but to a more or lesser degree depending on the strain. It is not easy to get rid of , either.<br />I am not strong enough to handle the drug Mepron which is used . I may be put on Malarone instead but not until my system can handle it. The Bartonella is even more complicated so we won't tackle that until later either.<br />I am in a state of having to accept these microscopic creatures as my guests , like it or not.<br />Rumi was one enlightened dude.<br />I hope i can follow in his footsteps and see the light at the end of the tunnel, too.<br /><br /></span> </span><br /></span></span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-2538666862082817292009-04-10T12:09:00.000-07:002009-04-10T12:21:59.848-07:00Rumi- nating<div style="text-align: center;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://1.bp.blogspot.com/_UdTSFbJ2s6g/Sd-bVJjDzfI/AAAAAAAAAsc/PPYe_--AbY4/s1600-h/dietrich_rumi.jpg"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 286px; height: 299px;" src="http://1.bp.blogspot.com/_UdTSFbJ2s6g/Sd-bVJjDzfI/AAAAAAAAAsc/PPYe_--AbY4/s320/dietrich_rumi.jpg" alt="" id="BLOGGER_PHOTO_ID_5323144072217742834" border="0" /></a><span style="color: rgb(204, 102, 0);"><span style="font-size:78%;"> art by Lisa Dietrich</span></span><br /></div><br /><br /><div style="text-align: center;"><b style="color: rgb(51, 204, 0);"><i>This being human is a guest house.</i></b><br /></div><div style="text-align: center;"><b style="color: rgb(51, 204, 0);"><i> Every morning a new arrival.</i></b><br /><b style="color: rgb(51, 204, 0);"><i> A joy, a depression, a meanness,</i></b><br /><b style="color: rgb(51, 204, 0);"><i> some momentary awareness comes</i></b><br /><b style="color: rgb(51, 204, 0);"><i> as an unexpected visitor.</i></b><br /><b style="color: rgb(51, 204, 0);"><i> Welcome and entertain all!</i></b><br /><b style="color: rgb(51, 204, 0);"><i> Even if they're a crowd of sorrows,</i></b><br /><b style="color: rgb(51, 204, 0);"><i> who violently sweep your house</i></b><br /><b style="color: rgb(51, 204, 0);"><i> empty of its furniture,</i></b><br /><b style="color: rgb(51, 204, 0);"><i> still, treat each guest honorably.</i></b><br /><b style="color: rgb(51, 204, 0);"><i> He may be clearing you out</i></b><br /><b style="color: rgb(51, 204, 0);"><i> for some new delight.</i></b><br /><b style="color: rgb(51, 204, 0);"><i> The dark thought, the shame, the malice,</i></b><br /><b style="color: rgb(51, 204, 0);"><i> meet them at the door laughing,</i></b><br /><b style="color: rgb(51, 204, 0);"><i> and invite them in.</i></b><br /><b style="color: rgb(51, 204, 0);"><i> Be grateful for whomever comes,</i></b><br /><b style="color: rgb(51, 204, 0);"><i> because each has been sent</i></b><br /></div><div style="text-align: center;"><b style="color: rgb(51, 204, 0);"><i> as a guide from beyond.</i></b><br /></div><b style="color: rgb(51, 204, 0);"><i><br /></i></b><div style="text-align: center;"><b style="color: rgb(51, 204, 0);"><i> RUMI</i></b><br /></div>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-83516039852520228942009-04-07T06:10:00.000-07:002009-04-07T06:22:43.939-07:00A Letter of ProtestMy husband and i both have nueroborreliosis and have been searching in vain for proper treatment for years.He has been diagnosed with Rheumatoid arthritis , Gastric reflux , depression and herniated discs. I have been diagnosed with acute sinusitis , ADHD, Interstitial Cystitis, ear , bladder and sinus infections, upper respiratory virus ,TMJ and allergies.<br />This is not our first exposure to Lyme Disease and its co-infections - further testing has revealed previous exposure - it was the latest 'bite' that did us in and caused full-blown Lyme Disease.<br />We haven't been well since.<br /><br />I went to one of the top Infectious Disease specialist in the DC Area and after having been tested for every disease known to mankind from syphilis to HIV- was told " i wish i could help you but i don't think it is Lyme Disease "- even though i tested positive on the Western Blot, had been treated for it by my Primary Care Physician and had ruled out all other possible diseases. My symptoms persisted. THE SAME SYMPTOMS but now they weren't Lyme Disease ??<br /><br />It wasn't until i found a doctor who believed that chronic Lyme Disease exists that we received proper care and continue to get better after years of needless suffering .Now the IDSA want to take away our last hope. Their 'guidelines' for treatment influence doctors and allow insurance companies to deny treatment. They continue to become more and more restrictive every year and make Lyme Disease out to be a trivial , easily curable disease coloring it 'black and white ' in as science points more and more to it being a decidedly 'grey' and complicated disease to diagnose and to treat. Yet people continue to stay ill , even after the supposed'cure'. They are careful to use the word 'early' in regards to treatment becuase they know that anyone coming in after a few weeks DOES NOT get cured so easily. Treatment can take years . Some live with this disease for life. When we do find a doctor who wants to treat us , their hands get tied.<br /><br />Why this stranglehold on Doctors , diagnoses and treatment for a disease that gets worse WITHOUT treatment and affects many thousands of men women and children every year ? Why the needless damage to our brains and nervous systems , our joints and our hearts ? How much worse does it need to get before anyone wants to help us ?<br /><br />We are tax-payers , work hard, pay for insurance and were once and still are in many cases"useful members of society", yet we can expect no help.<br />This is shameful and needs to stop NOW. We , as citizens will no longer stand for the ignorance and special interest profiteering of the self-proclaimed 'experts' who refuse to face the growing evidence that Lyme Disease is an Epidemic in this country. The IDSA 's theories and guidelines need to be re-tooled and re-examined to reflect the current crisis that is Lyme Disease. This disease does not go away after 30 days , as anyone who continues to be sick already knows. Lyme disease persists whether the IDSA says it does or not. We are the living proof .And we demand justice for ourselves and our children. We will be silent no longer. And our numbers are growing everyday.<br />Hear us roar !Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-38414762803281246782009-04-02T12:52:00.000-07:002009-04-02T17:45:25.500-07:00From Atop the Dizzying Heights<span style="color: rgb(0, 102, 0);"><span style="font-family:lucida grande;"><span style="font-size:85%;"><span style="font-family: lucida grande; color: rgb(0, 102, 0);font-size:100%;" >It is hard to tell where one is at with Lyme Disease and all its mercurial traits.<br />There are different ailments for different days and even those ailments move around your body like an apparition . Pain looms large one minute, in- say your left knee- then disappears a few hours later to take up residence in the back of your head, not unlike getting suddenly walloped by a softball to the skull.<br />Having Lyme Disease makes you in a constant state of flux - any kind of stasis or stability only a wistful remembrance of things past.<br />It is enough to drive one mad - if you let it.<br />I am still in the mode of wrapping my mind around the whole complexity of this disease. I have been on this new protocol with a Lyme Literate MD now for two weeks and i am , in fact, much better.<br />I can at least get out of bed .<br />I have some good days where i only have five or six major issues going on - e.g. my feet are cold and numb, my left shoulder is sore , it hurts when i pee, my eye is twitching uncontrollably for hours and i am feeling joint pain in my wrists and hands. That's a good day.<br />Don't get me wrong - i have hours here and there where i notice none of these and i almost feel normal again. Then one by one , the symptoms start to creep back in and i am reminded that i have a disease that isn't easily cured by anti-biotics as the current propaganda leads everyone ( who doesn't have Lyme ) to believe. There is a very good chance i will always have this pathogen in my body and i will have to , like countless others , learn to live with and learn to cope with the ugly reality of Lyme Disease for life.<br />Of course , my hopeful side wants to believe that as LD gets more and more prevalent and the media picks up on it that MAYBE just maybe there will be more funded research , more co-operation between contentious scientists, doctors and institutions and they will begin the process towards finding a REAL cure for this devastating illness.<br />I am one of the 'lucky' ones (so far) - i can still function , live my life with adjustments ( albeit in pain , and at half-mast ) but i can still walk and talk. There are many who cannot do these things due to permanent nerve and tissue damage from being left untreated or treated too late .<br />Yes, i am very lucky in that respect.<br />I am glad i started researching Lyme as soon as i was diagnosed and side stepped the mainstream BS and found a doctor who would help me.<br />The hardest thing though is to realize that had i had this information years ago i may have recognized the signs earlier or avoided it altogether by taking the proper precautions an/or early treatment.<br /><br />I cannot seem to wrap my mind around the injustice of having a disease no one properly warned the public about . That is enough to drive one mad , in itself.<br /></span><br /></span></span></span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-84565566444850853512009-03-27T09:43:00.000-07:002009-03-27T10:00:37.385-07:00Some Good Newsok - i am going to cautiously accept this news as GOOD - Colin is not exhibiting any symptoms and appears to be in great health - and with an acknowledgment of the unreliability of the testing that is currently out there- with that one small caveat - i am going to say with some measure of assuredness that <span style="font-weight: bold;">COLIN DOES NOT HAVE LYME DISEASE</span> !<br />I need to go over the tests with his Pediatrician when she returns from vacation and i will keep a watchful eye on him , nonetheless , but the preliminary word is that he is negative for <span style="font-style: italic;">Borrelia Burgdorferi .</span> I pray it stays that way FOREVER. I never want him to go through what his father and i are enduring. He is so pure and sweet and full of life and i just need him to stay that way for as long as is humanly possible. Isn't that every mother's dream ?<br /><br />I want to cry tears of relief and joy but i have to be honest i am afraid of jinxing it.<br />When i am at my wit's end i tend toward superstition . ( salt over shoulder , three hail mary's )<br />i just want him to be ok.<br />I have to remember to stay in the present moment and accept what IS.<br />My baby boy is ok, right here, right now.<br />ok,<span style="font-style: italic;"> <span style="font-weight: bold;">breathe</span></span>.<br /><br />Thanks to everyone out there waiting with held breath, too.<br />i really appreciate all of your love and support these days.<br />It helps me get through . It really does.Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com2tag:blogger.com,1999:blog-5589013541864533272.post-52437563770160845492009-03-25T16:48:00.000-07:002009-03-25T17:13:21.994-07:00Cold Feet, Cold Heart<span style="font-size:85%;color:#006600;">I had a really bad day today.</span><br /><span style="font-size:85%;color:#006600;">It was an 'off" day in more ways than one. </span><br /><span style="font-size:85%;color:#006600;">To start with ( no offense PC people) i had to write this post on a PC.</span><br /><span style="font-size:85%;color:#006600;">After many years a Mac afficianado , i hate trying to figure out a PC ( and with Lyme Brain - which remembers <em>nothing ) especially late at night and after the hot water runs out when i am trying to fill my bath !</em></span><br /><span style="font-size:85%;color:#006600;"><em>Uggh. </em>A perfect ending to a rotton day. </span><br /><span style="font-size:85%;color:#006600;">MY hubs , donned in a white Hazmat suit , goggles and respirator ( i kid you not - i took pictures to be posted later) sprayed the yard and environs with toxic chemicals today to kill the ticks that have been breeding in our yard since last summer. It literally hurt my heart.</span><br /><span style="font-size:85%;color:#006600;">Anyone that knows me can attest to the fact that i am a strictly Organic girl.</span><br /><span style="font-size:85%;color:#006600;">i believe in the Diversity of Life .</span><br /><span style="font-size:85%;color:#006600;">Lyme Disease has changed that one simple credo , forever.</span><br /><span style="font-size:85%;color:#006600;">Ticks no longer fit into my scheme of things. I fear and loathe them. </span><br /><span style="font-size:85%;color:#006600;">I tried to choose the least harmful and bio-degradable perethin based insecticide to keep the </span><br /><span style="font-size:85%;color:#006600;">carnage to the rest of Nature's bounty to a minimum but it still killed a little part of me along with the </span><br /><span style="font-size:85%;color:#006600;">creepy arthropods . It stung like a bee' s sting.</span><br /><span style="font-size:85%;color:#006600;">It was either that or never step foot in my garden , watch Colin run naked through the flowers with abandon , or let Nooni play hide and seek with the squirrels that live in our Linden tree. I chose the poison pill.</span><br /><span style="font-size:85%;color:#006600;">My heart felt poisoned all day as a result.</span><br /><span style="font-size:85%;color:#006600;">There is a lot of stress to keep at bay these days.</span><br /><span style="font-size:85%;color:#006600;">LD also makes one prone to irritability and emotional outbursts and they were all on board today , too.</span><br /><span style="font-size:85%;color:#006600;">It made for a tough day all around.</span><br /><span style="font-size:85%;color:#006600;">But as they say -</span><br /><span style="font-size:85%;color:#006600;">Tomorrow is another day....</span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com1tag:blogger.com,1999:blog-5589013541864533272.post-34390257362827499822009-03-23T12:52:00.000-07:002009-03-23T13:12:03.352-07:00Checking my Pulse<span style="font-size:85%;"><span style="font-family: lucida grande;"><span style="color: rgb(0, 102, 0);">My </span>LLMD<span style="color: rgb(0, 102, 0);"> is trying something called "pulsing" with my new anti-biotic therapy . I am a couple days on - one day off, with the theory being give the </span><span style="font-style: italic; color: rgb(0, 102, 0);">Borrelia & Co.</span><span style="color: rgb(0, 102, 0);"> a chance to come out of hiding little by little and pick them off that way. Otherwise , after being on anti-</span>biotics<span style="color: rgb(0, 102, 0);"> for so long the buggers get wise and see you as 'hostile territory and encyst or hide in your tissues ( harder to target with </span>meds<span style="color: rgb(0, 102, 0);">. ) until the coast is clear.</span><br /><span style="color: rgb(0, 102, 0);">That is why a lot of </span>Lymie's<span style="color: rgb(0, 102, 0);"> feel good on </span>meds<span style="color: rgb(0, 102, 0);"> and once off start to go downhill again.</span><br /><span style="color: rgb(0, 102, 0);">So , the idea is no </span>abx<span style="color: rgb(0, 102, 0);"> for a few days - then you beef up on Magnesium , which they feed on and hope that they want to play hide and seek and then </span>BLAM<span style="color: rgb(0, 102, 0);"> ! your </span>meds<span style="color: rgb(0, 102, 0);"> can do their job , destroying them more efficiently. It works for some people and since i was at a standstill with lots of bad stuff going on we are trying it.</span><br /><span style="color: rgb(0, 102, 0);">Today is an 'off' day and after a day of feeling very few symptoms - they are back in FULL force. I have been extremely fatigued since noon and my lower extremities are tingly and cold. Both eyes are doing the </span>cha<span style="color: rgb(0, 102, 0);">-</span>cha<span style="color: rgb(0, 102, 0);"> today and i have joint pain in my hands and shoulders . My neck is stiff and i am spacey and irritable. </span><br /><span style="color: rgb(0, 102, 0);">I think it is working </span><span style="font-weight: bold; color: rgb(0, 102, 0);"> ;(~</span><br /><span style="color: rgb(0, 102, 0);">- though it is really too early to tell - i have only been on this new protocol since </span>Friday<span style="color: rgb(0, 102, 0);"> but i had a great day Saturday and Sunday while i was taking my new anti-bios and supplements. I have to journal daily and keep track of any changes and at the end of the month we will know more.</span><br /><span style="color: rgb(0, 102, 0);">I still have a lot of tests out there and still some unanswered questions so it is far from 'set' but i am looking for any sign that SOMETHING is working . I need to know that there is a light at the end of this </span><br /><span style="color: rgb(0, 102, 0);">very long , very dark tunnel . </span><br /><span style="color: rgb(0, 102, 0);">I think i see a spark of light off in the distance but it could just be my optical neuritis getting the best of me. It's hard to tell when you have </span>LD<span style="color: rgb(0, 102, 0);"> . It comes and goes.</span><br /><span style="color: rgb(0, 102, 0);"> Just like my mood these days.</span><br /><span style="color: rgb(0, 102, 0);">i remain optimistic , regardless.</span><br /></span></span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-77872933255810718302009-03-19T17:34:00.000-07:002009-03-19T18:09:11.353-07:00Hope is a thing with feathers...<span style="color: rgb(0, 102, 0);"><span style="font-size:85%;"><span style="font-family: lucida grande;">Today was my appointment with a LLMD.<br />That's Lyme Literate Medical Doctor to the uninitiated . What exactly is an LLMD ?<br /> It means a brave , caring MD who has decided to go against mainstream politics and help sick people who aren't being helped. They are few and far between and NOT easy to find nor get an appointment with . They are overflowing with desperate men, women and children who need their compassion and even more importantly , their medical advice and treatment for a disease BIG MEDICINE has turned its back on.<br />They are pioneers and scientists and detectives and THEY are interested not in Lyme Disease as phenomenon but in helping Lyme Disease patients get better.<br />That was the rumor , anyway.<br /><br /> After much research , run-around and not a small bit of sly detective work ( big pat on back to yours truly and an even BIGGER thank you to all of the kind souls who shared information with me )- i arrived at a name.<br />Along with the name came rave reviews so i took a chance and called. And called . Kept calling.<br />A LIVE BODY ! A conversation ensued - "not currently accepting new patients - check back in May "<br />Another call - begging pleading crying- got the doctor's wife on the phone - BINGO ! A heartbeat !<br />"I'll see what i can do - no promises- but i will try " That's all i wanted . Someone to try for me.<br />I got a call back AND an appointment.<br />That was today . I was nervous and i was just the least bit hopeful - but by this time i was a bit jaded , too.<br />I pretty much trust no one on this subject. There is no ONE answer and i am wary of anyone who claims there is. I am living proof .<br />Well , i got answers but no easy answer.<br />There is no miracle cure for disseminated Lyme Disease. I kind of already knew that but i was hoping for a 'miracle' . Who doesn't when they or someone they love is ill ?<br />There are different experimental protocols ( aren't they all , really ? ) and no one protocol fits everyone.<br />After 2 and 1/2 hours of rigorous Q & A - i finally felt heard and validated. My GP is caring and she tried but she couldn't get anyone to advise her outside of " 28 days of Doxycycline" . That didn't work for me .<br />I got worse. Her hands were tied. She was frustrated and I was left feeling like i was quickly reaching a dead end.<br />This LLMD unshackled my hope. They will now work together to get me (us) well.<br /><br />More testing , more wait and see, but a new , more holistic approach with new anti-biotics - in a different combination . Who knows if it will help ?<br /> I just know i am willing to try something new that approaches the disease in a comprehensive and directed way- one that works with my body and not against it.<br />That means diet changes, supplements , drugs and patience.<br />I have it all on board except the latter - THAT i will have to work on .<br />It is a start , though.<br /><br />Begin at the Beginning ...<br /><br /></span></span></span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com1tag:blogger.com,1999:blog-5589013541864533272.post-79155045727521748862009-03-18T05:25:00.000-07:002009-03-18T05:27:03.665-07:00Say a Prayer or Mantra for my Little One Today<span style="color: rgb(0, 102, 0);">Colin gets tested today.</span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0tag:blogger.com,1999:blog-5589013541864533272.post-44833544480429908632009-03-17T13:42:00.000-07:002009-03-17T14:44:12.426-07:00And then there were Two...<span style="font-size:130%;"><span style="font-family:lucida grande;"><span style="color: rgb(0, 102, 0);"><span style="font-size:85%;">My husband who also had mysterious ailments throughout last year was tested for Lyme per my Drs. recommendation and Voila ! both his tests ( ELISA & Western Blot ) came back highly positive for Lyme.<br />We had a stone walk and wall put in last summer and i recalled pulling a tick from his scalp behind his ear .He had been to the stone quarry earlier in the day and remarked that it was 'loaded with ticks' .<br />He woke me in the middle of the night sensing something crawling in his hair. I found two ticks crawling and another already embedded deep in his skin. I never felt my tick bite - never saw it coming. I don't know why that bugs me but it does.<br />I pride myself on being an 'aware' person. I don't like the idea of something so creepy being able to sneak up on me.<br />I remember at the time of my husband's tick bite quoting my then 'official' knowledge " Relax , hon - it has to be embedded for 48 hours before it can do any harm. We'll watch for the bulls-eye , anyway you are fine if you don't have it.<br />I rue that day now.<br /><br />It turns out ( regardless that the NIH & CDC and IDSA still tow the old line) there is new evidence ( scientific lab-based studies AND documented patient histories) that anytime a tick starts to feed transmission of tick-borne disease can occur . It turns out that in reality , only about 50% of people ever get what is termed as a classic bulls-eye rash. If Lyme Disease is not caught in the first few weeks ( maybe less depending on the individual) BEFORE the bacteria disseminates through the body , then a standard 'cure' of 10-28 days of doxycycline is likely not to reach all of the bacteria. You have a VERY good chance of staying ill or relapsing if that is the case.<br />If the Lyme bacteria ( </span><span style="font-style: italic;font-size:85%;" >Borrelia Burgdorfii</span><span style="font-size:100%;"><span style="font-size:85%;">) has entered your central nervous system or other tissues and organs the doxycycline will be unable to reach it all.<br /><br />Now considering that Lyme Disease is caused by a Spirochete similar but actually quite a bit more complex than syphilis and syphilis is routinely and aggresively treated for months- doesn't it cause one to pause and wonder why , when people continue to exhibit the SAME symptoms after a short course of treatment , they are still sick if 28 days of Doxycline is such a sure cure ? I have read in some studies that unless you maintain blood levels of 400-600 mgs of doxycycline , borrelia will survive. Yet , the standard - what i am on right now - is only 100 mg twice a day. My husband is on the same . Why is this the standard ?<br />I am in my third week and no better than when i started. I fear i am going to be one of those people who gets lost in the Lymelands of medical controversy and policy.<br />This is why after an exhaustive search i am going to see a specialist who TREATS Lyme Disease UNTIL they get better . I have had this for more that six months and only diagnosed in the last few weeks - i am not willing to take a "wait and see" approach with my health. Sorry.<br /><br />Yes,it is true - some people get better easily - IF caught early .<br /> Most late diagnoses are not so simply cured- regardless what the NIH & IDSA would like you to believe.<br />There are THOUSANDS of sick children and adults to attest to that fact.<br />The powers that be would have you believe they are all under some mass delusion or have " Post-Lyme " which is an unexplained set of symptoms present after the bacteria no longer exists in the body. You guessed it - there is NO treatment for it. Chronic Lyme simply does not exist according to these 'experts'.<br />Inconvenient for them that there is a growing body of evidence to the contrary. Now if somebody would do something about it that would be great.<br />To be fair there are a number of brilliant scientists and doctors without a personal agenda who are willing to take on the status quo and the current mainstream view towards Lyme DIsease. They are more concerned with human suffering and healing than prestige, power and the almighty dollar.<br />Unfortunately there is a great deal of pressue out there to " tow the party line' as more people continue to be ill . I can only hope and pray that this changes soon . People have a right to know and to be provided proper health care .<br />This is but one very important issue in the National Health Crisis .<br />It has hit home for me and my family.<br />i for one , will fight as long as i can and as hard as i can until someone listens. Lyme Disease is NOT going away . And yes, you SHOULD be afraid.<br />Be VERY afraid.<br /></span><br /><span style="font-style: italic; font-weight: bold;">Please read my first post "ticker tape parade for my story of discovery.</span><br /></span><br /><span style="font-size:85%;"><span style="font-weight: bold;">see links on sidebar for more info on Lyme Disease.</span><br />To be fair -go to the CDC and NIH, IDSA sites and see how vague and concise they are about an illness that is agreed by everyone concerned to be 'complex'. Then talk to people who have it.<br />Who do you believe ?</span><br /></span></span></span>Lasireneserenehttp://www.blogger.com/profile/09169369032695079236noreply@blogger.com0