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  Lime Soap

 Much watch Videos

 Symptom Checker

  Must have Links 

  List of Lyme LIterate MD's  in MA

 My Story/ Updates and struggle with Lyme Disease / Babesia 

Legislative happenings



 

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Lemon/Lime set of three

Letter Soap 

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 natural salts  

Salt Soap set of three


 


Please Watch!


          Part One                                            Under the Eightball                                  Part Two

                                   Plum Island And Lyme Disease?

 I hate to think that Lyme Disease is a Man made disease but Plum Island is Real. And  Lyme CT is where it started.   I  am posting these for the viewer to decide for themselves and these are just educational videos only.  I am not making any claims, Just posting educational information 









          Treating Lyme Disease Naturally 

in my experience I was too sick in the begining to treat my Lyme Disease/Babesiosis only naturally, I did however take a lot of supplements to boost my immunity while I was sick and it did wonders and Now that I am currently off my Lyme treatments of antibiotics, anti-malaria and other drugs, I am continuing to take supplements and they do work. I believe the trick to combating symptoms and keeping them away is to flush your body periodically of toxins and to keep the immune system strong. I hope these videos are helpful to anyone suffering or knows of someone who is


  No matter what you decide to use always talk to your LLMD  about what you are using along with any treatments your doctor may have you on.  



                                                    Thanks for watching!

                     Here are some more interesting videos 












                       Thanks for watching.   Knowledge IS Power!












Lyme Disease Symptom Checklist






Must have Links for Lyme disease information 

http://www.bayarealyme.org/

http://www.centralmasslyme.org/

http://www.centralmasslyme.org/

http://www.s-l-a-m.org/

http://www.igenex.com/Website/

http://lymelightfoundation.org/

http://www.lymediseaseassociation.org/

http://www.ilads.org/

http://www.mdjunction.com/ 




If you would like a list of MA Lyme Literate Doctors please send me a request via Email:   LisasSoapKitchen@yahoo.com and I will email you a list 




My Lyme Disease Story :

My name is Lisa and I have Lyme Disease and Babesiosis (diagnosed by lab work). I was Diagnosed November 2014. I started to get sick in Around August - September 2014  (when tested it was found I had antibodies so my LLMD thinks I was bit before and then got bit again and thats when I got sick)

I had a headache that wouldn't go away. I am a single  front desk medical secretary in a very busy office. The headaches were every single day every single night. The fevers were almost every day,  I was in my primary doctors office a couple of days a week and was put on many different medications for migraines. It got so bad that noise hurt, light hurt. it hurt to answer the busy phones at work because just hearing the voice on the other end of the phone caused so much pain,Just talking to someone hurt my ears, every little noise hurt. It was hard for me to smile at patients coming in even my co workers who I need to mention were a HUGE support for me. They listened, they gave me shoulders and advise and offered in so many different ways to help me because I was getting emotional every single day..  I hated being so miserable especially at work.

 Finally I was in my primary's office and he was out of the country on vacation so I saw the Nurse Practitioner. She said  "lets just throw a Lyme test on there" Those words saved my life. But in the eyes of the CDC I  DO NOT have Lyme disease because I don't have enough positive bands to be considered positive.  I was put on Doxy, and Prednisone ( three rounds) and  I was getting worse. I never knew what "Fatigue" was until now. I was sleeping in my chair every day after work by 6:00 pm. THIS is not normal for me. I stopped doing what I love, crafting. I stopped doing a lot of things. 

My headache was so bad one day in November that I called my MD office telling them I couldn't function anymore. She called me back after talking to My primary who was out of the country and said he wanted me to go to the Emergency room he thinks I may have  Lyme Meningitis. I finished my day and at  3:00 pm I walked upstairs to the ER. (I work in this hospital) The ER was a circus. MY doc wanted me to have a lumbar puncture to rule out the Meningitis but yet they were back and fourth about this. One person is telling me I "probably don't have that"  another person asking  "WHO told you that you have Lyme disease??"  I was treated like a drug seeker and attention seeker and made to feel like it was wrong for me being there, like I was crazy. They did give me IV pain meds and antibiotics and did finally do the lumbar puncture. The nurses would come in an look at me sympathetically as I was crying and tell me it would be okay.  Well I worked in the ER for 15 years I KNOW what they were thinking and it wasn't sympathy, not that its their fault, Working in the ER for years makes nurses "use"  to things. I was just another patient there for a  "headache".

 FINALLY the admitting doctor came in and said "we would like you to stay over night and see the infectious disease folks in the morning, you may need IV antibiotics for 28 days"  FINALLY someone understands and is HELPING ME.  So off I go to the other side of the ER where I become an observation admit.  At this point my headache went from a 20 down to an 8 it still hurts but Im no longer crying in pain. The ER doc came in after an hour of me being ignored and asked how I was feeling. I said I am not crying would rather be in my own bed but they want to see me in the morning. He  proceeded to tell me that its  "overkill"  and he could get me discharged. He left and  came back in the room told me to take Motrin and Tylenol for the headache and  20 minutes later I was standing in the parking lot crying waiting for my boyfriend to pick me up. I felt abandoned and embarrassed. Was I really going crazy? 

the next day I woke up in screaming screaming unbelievable pain. My headache was tripled from the lumbar puncture. The NP that I work with arranged for me to talk to an infectious disease doctor that morning and she said it sounds like Lyme Meningitis and would need to come in today (really???)

So my mother picked  me up because i was in no way any condition to drive and off we went . So sitting in his office waiting for him to come in and my poor mother is looking helpless because the only thing I have been doing for a week is crying. He comes in with his resident and does a quick check asks me a bunch of questions does my Blood pressure and Temp (and I had a 102 temp that he completely ignored) he leaves to go check my blood work I had done by the NP and comes back with his resident and proceeds to tell me " you don't have Lyme disease, I want you to stop taking all your medication, Everyone gets headaches" I Was stunned. The only thing I could do is completely lose it right there in front of everyone. I said why cant anyone help me? its so bad Im in so much agony  its in my face,my ears, my  jaw my neck ..... and his resident says. " have you had your ears checked?"  I just looked at her in complete disbelief as she looks in my perfectly fine ears. I felt belittled as he talked to me like i was 9 years old, and like  I was a complete nut. He proceeded to tell me that its just a bad migraine and I completely lost it by now to the point I couldn't even talk. My poor mother demanded he do something. So he had another Lyme test ordered. And he gave me a prescription for Tylenol Codein (really? if that worked I certainly wouldn't be sitting in his office crying my eyes out ) and he  told me that "He is the specialist and he would know" (if I actually had Lyme disease)  He was condescending, sarcastic, and cocky and I will never recommend him to anyone nore will i ever ever step foot in his office again.  

We left his office and went right to my primary doctors office AGAIN and sat in parking lot until they came back from lunch. The NP was absolutely shocked at how I was being treated in the ER and by the "specialist" . She gave me another shot in office of Torrodol which I tried to have hope it would help. It did not.

Next stop Neurology. He was very nice added some more tests onto my Lumbar spinal fluid tests.Ordered an MRI which was absolute torture with this headache. Really? who has someone have an MRI when they have this kind of headache? I stood outside afterwards crying while I waited to be picked up and cried all the way home.  He Talked nicer to me and Seemed to understand. a few days later  I looked up all my test results which were normal and canceled my next appointment with him. Whats the point? He is just going to tell me that everything came back normal.  

November and December was pure hell. I took an FMLA from work,  I thought I was dying to the point I told my boyfriend who was my rock who he needed to call when I was gone and what I wanted for a funeral etc. I told both my kids as well. I started journals for my kids so they would have something special from me after I am gone. I felt like I was dying a slow death and thought it was just a matter of time.

I read everything I could get my hands on about Lyme Disease, joined every blog and finally found a Lyme LITERATE doctor in my area and that accepted my insurance. and yes there are doctors that are actually called Lyme literate MD's .  I went to see him in January and long story short  HE SAVED MY LIFE.

Lab work came back positive for Babesia which is one of the nastiest co-infections of Lyme disease. Lyme disease is also a clinical diagnosis because there are no tests that are 100% I was shocked at what I read about Lyme disease and shocked at the controversy! And here I am, I am living it! 

  For a year I was on meds. Azithromycin 250 mg twice a day . 2 Anti-malaria drugs to treat the Babesia because its a malaria like disease. and Nystatins.  I tried really hard in the begining to treat  this naturally but I was just too sick and couldn't.  At this point I was nauseous every day. light headed, weak, fatigued, Fevers every day sometimes they would be 99 other times it would be up to 102,  All my bones hurt, my headache was still rockin, and the ringing in my head that I can only describe as that high pitched noise that comes out of the TV. I would drive my boyfriend crazy by turning off the TV all the time and saying.  Do you hear that?       its crazy. Now One year later I just had more blood work done because all these meds are making me sick I am waiting for those results. And if they come back that all these germs are possibly out of my body than I can stay off these meds. If it comes back that those nasty bugs are still in my blood or if i keep having symptoms than I will have to continue on.

One thing I have learned from all this is that there needs to be a change in the mentality of Lyme disease. Doctors need to have a better understanding of this disease and the CDC needs to change the criteria of positive diagnosis. If I didnt find my LLMD I believe I would have continued to get sicker and sicker and possibly would have passed away or  maybe would have lost my job, and end up in a wheel chair? I don't know what would have happend to me but the outcome would have ruined my life.               That I do know.    I was so sick that I even wrote both of my kids a kind of diary for each of them so they would have something special from me after I pass. 

 Its important to have some sort of support if you are suffering from Lyme disease. I had my wonderful co workers who saw me suffering and was extremely supportive while I was working,  and  I had my mother and my boyfriend  They were the only two people in my life that actually understood (understands) my illness. My friends don't even understand and even friends that have been in my life for 20 plus years. THIS is the reality of Lyme disease.  

This is just a  quick breakdown of everything I went through. There is so much more I could write so much detail I could get into  (really there is... a lot of things happened in between) but I am trying to break it down to a reasonable length so as not to bore my readers. 

My primary care doctor is great but he still cant understand WHY I am on so many medications and I know he is a good doctor but again, he is one that doesn't understand Lyme Disease.  I cant stress enough how important it is to find a Lyme LITERATE MD if you are sick. Lyme disease mimics so many diseases and I do believe at some point in time there is going to be a HUGE realization with the medical community about this horrible disease

I am going to be posting Lyme soaps which will be Lime scented. and I am also going to be posting Lots of links and resources for anyone that is seeking information for themselves or a loved one. I will post the letters I have written to my state and all the legislative movements happening now and the Bills I support etc. 

 Anyone can reach out to me at any time if you need someone to talk to that has been through or going through it now.

Email me and I will be happy to contact you!

UPDATE: 

I have since been "Officially" CDC positive for Lyme disease  & My lab test for Babesiosis did come back positve from the start thank god.

You may get negative test results over and over because there is NO good Lyme disease testing   Not that I am happy about it or feel I need to prove myself but I kinda do! 

I was on Antibiotics, Anti Malaria drug, Nystatins  and a bunch of natural supplements and after over a YEAR I feel human again,I had constant headaches for a year! fatigue and I am so thankful that my insurance covered all the testing and blood work and especially thankful to my LLMD for literally saving my life. I tell him that often and refer people to him on a regular basis.

Its been a long battle and one I hope I wont have to battle again. I pray every night that I wont get sick again.


Thanks for your interest  and visiting my website!


07/20/2016

UPDATE:

So I was on vacation the first week of July and did a lot of gardening and  pulled a big black legged tick out of my side.  I then developed the bullseye rash  11 days later .  I have been an emotional wreck. BACK on the Anti-malaria, Doxy, Nystatins and now anti nausea because they ALL make me SO sick.   ---> BOOOOO  TO LYME DISEASE!! <----

 I just cant believe this. I have Lyme disease ON TOP of my Chronic Lyme. And I am so careful when I am outside.




The first picture is  7/18/2016 when I first noticed it it was bumpy and itchy and did not look like a bullseye but I was told by my LLMD this is a Lyme Infected Tick that bit me.  As you can see from the pictures It has gotten worse.   I just want to show that it does NOT have to be a perfect Bullseye rash .   And it took  11 days from the bite before I got the rash 


                             

               This is what MY Tick rash looks Like         


My Medical UPDATE:

July  2017 

Suddenly Headache and Loud ringing and pressure/pain in my head, Dizziness, sleeplessness, fatigue is back. My ears both hurt and  Fatigue is setting in along with moodiness.  and depression from this.  I dont know how much more i can take.    Was put back on ALL those nasty meds for months.. spent a lot of time in the middle of the night throwing up. feeling horrible but its better than the alternative 

2018 Update:  Feeling Great, Having chronic lyme has its ups and downs, I do go through periods of time where I do NOT sleep at all.. I sweat constantly not just the night sweats, my bones ache like no tommorrow, my feet and legs hurt to walk, from Neuropathy caused by the Lyme Disease, Fatigue and if you have never had legit fatigue you have no idea what its like, I had no idea how horrible it was until I had it.  I have weeks or even months where I have dark circles around my eyes ,  and this causes depression because its frustrating when you are as active as i am. Then I will feel great like at the moment, Feet and bones still hurt, but mentally I feel great I  have energy to do what i need to do.  Lyme disease sucks in every way shape or form but I still feel Grateful that mine was caught before I ended up dead, or in a wheelchair and/or disabled. 

God Bless

Lisa 







Legislative Happenings 

We need changes!   People die because insurance wont pay for long term antibiotic treatment. MY primary cant wrap his head around why i am on all the meds im on. and I simply tell him, my LLMD saved my life I will take any meds he says is necessary. I THANK GOD EVERYDAY that my insurance has covered all my meds , it has covered all my lab work... not everyone has a good insurance plan as Im lucky enough to have. ....we need this bill signed. LONG TERM antibiotics are NECESSARY!! & we need more education for our doctors.



 

LEGISLATIVE UPDATE! Governor Baker has until tomorrow Thursday, July 28th to sign or veto. Please take a moment to call his office and ask him to sign the Lyme bill 617-725-4005. Should Charlie Baker decide to veto and not sign the bill it will go first to the House and then to Senate for override. We have been assured by our bill sponsor, Senator Anne Gobi, "there will be an all out effort to get this done" and done before our short deadline. Please make your phone calls, RT our tweets @LymeCoalition and keep a positive attitude. Together we can make a difference!

MA Lyme Coalition 

7/29/2016   LEGISLATIVE UPDATE: Governor Baker chose to veto our bill, not surprising. As of 7:50 pm our bill sponsor reports the House is actively preparing to override then it will be up to Senate to do the same. We remain confident in the support of both House and Senate every step of the way! We will keep you posted! -MA Lyme Coalition


the laws are changing!  Insurance companies are now forced to PAY for long term treatment! yay! what an accomplishment that is!   






Lyme doc protection bill signed by Iowa governor

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Governor Terry Branstad has signed into law a bill to permit more aggressive treatment of Lyme disease than previously allowed by the Iowa Board of Medicine.

The bill states:

A person licensed by a board under this subtitle shall not be subject to discipline under this chapter or the board’s enabling statute based solely on the licensee’s recommendation or provision of a treatment method for Lyme disease or other tick-borne disease if the recommendation or provision of such treatment meets all the following criteria:

  1. The treatment is provided after an examination is performed and informed consent is received from the patient.
  2. The licensee identifies a medical reason for recommending or providing the treatment.
  3. The treatment is provided after the licensee informs the patient about other recognized treatment options and describes to the patient the licensee’s education, experience, and credentials regarding the treatment of Lyme disease or other tick-borne disease.
  4. The licensee uses the licensee’s own medical judgment based on a thorough review of all available clinical information and Lyme disease or other tick-borne disease literature to determine the best course of treatment for the individual patient.
  5. The treatment will not, in the opinion of the licensee, result in the direct and proximate death of or serious bodily injury to the patient.

Despite opposition from the state’s medical community, the bill passed both houses of the legislature unanimously.

According to Representative Sandy Salmon of Janesville, the state Board of Medicine has disciplined two doctors for prescribing antibiotics for more than 30 days as treatment for Lyme disease.

During House debate on the bill, she said, “This has had the effect of quashing the willingness of Iowa medical providers to treat and even diagnose Lyme disease.”  

(Ref:LymeDisease.Org 2017)




Lyme Times Magazine  you can download magazines and get lots of information from LymeDisease.org You can get the basic membership with no videos for a reasonable fee or pay a little more and have more access 


https://www.lymedisease.org/members/lyme-times/archive/


















































































































































































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