Archive | December, 2012

2012 My Blog In Review – Thank You

30 Dec

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

 

Thank you to all of my fellow lymies and chronically ill friends for taking the time to read my blog. I wish you all a happy, healthy and loving 2013. Hugs

 

Here’s an excerpt:

19,000 people fit into the new Barclays Center to see Jay-Z perform. This blog was viewed about 97,000 times in 2012. If it were a concert at the Barclays Center, it would take about 5 sold-out performances for that many people to see it.

Click here to see the complete report.

 

Take Care – Bryan (Lyme Inisde)

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Lyme Disease Information Links

30 Dec

 

Lyme Disease Information Links

 

www.lymedisease.org <http://www.lymedisease.org/> –the website of
LymeDisease.org (formerly the California Lyme Disease Association) gives
info about ticks, Lyme disease, co-infections, prevention, risk maps,
downloadable brochures, blogs, news and events.

In addition to its website, LymeDisease.org also publishes a quarterly
journal, The Lyme Times
<http://www.lymedisease.org/lyme_times/about/about_lyme_times.html> ,
distributed free to members. (Click here to join.)
<http://lymedisease.org/oss6/new_signup.php> We post Lyme-related news
on Facebook <http://www.facebook.com/lymedisease.org> and Twitter
<http://twitter.com/Lymenews> and maintain a network of state-based
on-line support groups
<http://www.lymedisease.org/activism/not_calif.html> . Sign up for our
free email newsletters <http://lymedisease.org/> .

 

Dr. Burrascano’s Lyme treatment guidelines.
<http://ilads.org/lyme_disease/treatment_guidelines.html

Print out this 37-page document and highlight the parts that pertain to you. Take a copy to your doctor.

 

ILADS <http://www.ilads.org/ International Lyme and Associated

Diseases Society. Professional organization for doctors who treat Lyme
disease. Lots of information about Lyme, including videos of educational
presentations about Lyme-related topics and downloadable brochures.
Gastrointestinal manifestations –
http://www.lymenet.de/literatur/vtsherr_gut.htm

Psychiatric manifestations

<http://www.mentalhealthandillness.com/lymeArticles.htm> of Lyme.

 

Lyme and multiple sclerosis
<http://www.lymeinfo.net/multiplesclerosis.html>

 

Public Health Alert <http://www.publichealthalert.com/ –monthly newspaper on Lyme and related issues. Read it free on-line.

 

Lyme and autism <http://www.lymeinducedautism.com/

Recommended books, articles and films:

 

The Beginner’s Guide to Lyme Disease
<http://lymedisease.org/news/touchedbylyme/beginners-guide-to-lyme-disea\
se.html
> , by Nicola McFadzean, ND.

 

The Lyme Disease Solution
<http://lymedisease.org/news/touchedbylyme/24.html> , by Dr. Kenneth
Singleton

 

The Lyme Diet <http://lymedisease.org/news/touchedbylyme/433.html> , by
Dr. Nicola McFadzean. What to eat while healing from Lyme.

 

Cure Unknown: Inside the Lyme Epidemic
<http://lymedisease.org/news/touchedbylyme/36.html> , by Pamela
Weintraub. Excellent explanation of the scientific, medical and
political turmoil surrounding Lyme disease.

 

Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care
Practitioners Share Their Healing Strategies by Connie Strasheim. This
book can be read on-line for free
<http://books.google.com/books?id=ZFMRKZ2uoW4C&lpg=PA114&ots=jox7sn-D-j&\
dq=google+books+insights+into+lyme+disease+treatment&pg=PP1#v=onepage&q&\
f=true
> .

 

Poughkeepsie Journal’s investigative series about Lyme disease.
<http://www.poughkeepsiejournal.com/section/lyme?template=odytheme&theme\
=lyme
>

 

Under Our Skin, award-winning Lyme documentary film. Available for free
viewing at Hulu.com <http://www.hulu.com/watch/268761/under-our-skin> .

 

Putting Lyme Behind You, 2-DVD set. Dr. Burrascano lecture, along with a
panel of other Lyme-treating doctors. Available for purchase here
<http://lymedisease.org/lyme_store/lyme_store_burrascano.html> .

 

Other resources:

 

LymeTAP.com (help with paying for Lyme related blood work up to 75%)- http://www.lymetap.com/–Lyme Testing Access Program. Financial assistance for Lyme diagnostic testing.

 

Info about how to save money on medical lab tests
<http://www.lymedisease.org/news/touchedbylyme/labtests.html> .

 

Needymeds.com <http://www.needymeds.com/> –Financial assistance for
obtaining medication.

 

Click here
<https://www.youtube.com/watch?feature=player_embedded&v=5_138EmwiaE#%21\
> for a YouTube video that explains the process.
Prescriptionhope.com< http://www.prescriptionhope.com/index.html> –a service that helps you obtain low-cost medications.

 

Clinic of Angels <http://www.clinicofangels.org/> –financial assistance for Lyme treatment

 

Lymelight Foundation <http://www.lymelightfoundation.org/grants/>–financial assistance for Lyme treatment for patients ages 3-25.

 

Free on-line book, Infusing for Lymies
<http://issuu.com/lymeunderground/docs/infusingforlymies> , lots of information about PICC lines and IV drugs.

 

Filing for disability benefits <http://www.lymedisease.org/news/touchedbylyme/ssdi.html> when you have Lyme.

 

Outside of the United States:

 

Canadian Lyme Disease Foundation <http://canlyme.com/>

 

BADA-UK <http://www.bada-uk.org/> (Borreliosis and Associated Diseases Awareness UK)
Lyme Disease Action <http://www.lymediseaseaction.org.uk/ (UK)
Lyme Disease Association of Australia <http://lymedisease.org.au/

Karl McManus Foundation – http://karlmcmanuslyme.org/  (Australia)

 

AussieLyme (on-line support group) – http://au.groups.yahoo.com/group/AussieLyme/>
France Lyme <http://www.francelyme.fr/

 

Tick Talk Ireland – http://lymedisease.org/news/touchedbylyme/www.ticktalkireland.org

 

Lyme Poland – http://borelioza.org/>

 

Deutsche Lyme Borreliose Hilfe – http://lyme-hilfe.npage.de/#

 

Onlyme-aktion.org – http://onlyme-aktion.org/  (Germany)

 

 

*Links provided by Dorothy of  www.http://lymedisease.org/

 

 

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Merry Christmas – Happy Holidays Support Tree

25 Dec

Happy Holidays support tree

Merry Christmas to all my chronically ill friends, I hope you all have a pain free day. Here’s to a new year of better health, love, and finding happiness.

Hugs &  Happy Holidays –  Bryan (Lyme Inside)

Taking A Break – Latest Blood Work Results

15 Dec

will-return-sign2

 

Taking A Break

 

My Latest Blood Work Results

After my last blood results a couple of months ago it was thought for the second maybe the third time in my life I definitely have Lupus. Like I have said before it runs in the family and one doctor will say you have yet another will say you do not. My rheum and LLMD thought I have it.

My new primary doctor (who I am not a fan of) thought I was so partier who was up to no good I guess although I told her I have been bed bound for the past 3-4 years and I don’t do anything. She tested me for Hep C, HIV, Syphilis and some other STDs. I was also tested for Lupus, Lyme, Vit D, Thyroid, cholesterol and a Complete blood panel.

 

My results:

Lupus – Negative! (was positive/ high ANAs last month)

HIV, HEP C, Syphilis, STDs – Negative

Western Blot #2 – Negative on all bands (was INT on bands last test)

Vitamin D – Borderline low/deficient (I took 50,000 IU already and now 6,000 IU per day for 3-4 years)

Thyroid – Borderline low (take levoxyl daily)

Cholesterol – High on everything (I eat/drink healthy, don’t smoke, don’t drink…etc)

 

I am told that my double C677T MTHFR mutation can cause bad cholesterol which makes sense to me because it’s not like I’m overweight and eat fast food all the time. I eat maybe 2 meals per day and usually chicken and veggies and I drink either tea or water. So it was a shock to see my cholesterol so high. It also runs in the family (genetics).

My Western Blot is going to piss me off because my PCP will say to me “SEE I TOLD YOU LYME IS NOT CHRONIC AND YOU DON’T HAVE IT”. Then I will have to explain how inaccurate the Western Blot is and about false negatives all over again like I have done time and time again with PCPs. I already explained to her all of my weird symptoms that only fit Lyme disease and conifections but she didn’t seem to believe me. She kind of gave me the “quit being a baby look”.

I have nearly exhausted all my primary doctor (PCP) choices who take my insurance in my area and I don’t drive so I need to stay near by. Plus this doctor is at a well known medical center which I like or else I would keep looking for a new doc. But after not finding a good doctor over and over and over you just sort of give up. This doctor on her web site said she “deals with Lyme” yet she knows nothing about it.

So my blood work once again had some good and bad in it. But nothing will get me down during the Holidays, I love Christmas and I plan on making some deserving people happy with my gifts. The Holidays are about being close to those you love and spending time together and not about the presents but I just like to spoil my little buddy.

 

Antibiotic Break

I am taking a break from antibiotic at this time. I did antibiotics, injections (IV recently) hard and heavy for 2 years straight and I am showing no progress. I think it is time to let my body and organs rest. I am taking supplements and focusing on my immune system now.  I never have any good days and I never leave my house (literally). At this point I am lost and trust no doctors and I feel I need to just enjoy football and not have to worry about an IV in my arm.

 

My heart goes out to all the children and families in the shooting today. So sad.

 

-I wish you all a safe and happy Holiday.

 

 

 

 

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