Bloody Lymey

A Blog About Living with Lyme Disease

Claritin & Lyme Disease?

Oh, I don’t want to turn into the Tweeter of Bloggers where I sort of copy and paste links to interesting articles.

But here we go again:  http://lymedisease.org/news/lyme_disease_views/claritin-lyme-balf.html

Has anyone heard of this? I never tried it so I cannot recommend nor not recommend it.  Might be worth reading up on.

If anyone has any experience with this, please chime in.  We would love your thoughts.

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Magnesium: necessary mineral (and possible treatment protocol ? )

I have heard numerous times that we Lymies suffer from low magnesium and there is great debate over whether it is authentically lower magnesium levels or whether our symptoms mimic those of someone with depleted magnesium levels. I have also read that the bacteria itself siphons magnesium from all of us for its own benefit.

There is also a Magnesium Treatment (and because I’m posting it does not mean I am in any way endorsing it. I never tried it.  Likewise, by having stated that does not mean I am against it):

MAGNESIUM PROTOCOL:
– Magnesium Malate, approximately 200mg 6 times a day (every 2 hours).
– Sublingual B6, approximately 12mg with each magnesium dose.
– Selenium, approximately 12mcg with each magnesium dose.

ADDITIONAL SUGGESTIONS:
– An immune booster such as “Host Defense” or beta glucans.
– Multiple vitamin and mineral supplementation
– A good alkalizing diet

(Source:  http://www.lymeinfo.net/magnesium.html)

I have tried many supplements and many I have swore by only to find they seemed less necessary when I ran out of them. The one supplement I swear by, and have for many years, is Magnesium.  When I run out of it, my body tells me I need to get thee to the store by making me constipated and causing me to grind my teeth at night.

Here are some benefits to having par levels of magnesium:  http://www.lovelivehealth.com/10-amazing-ways-magnesium-heals-your-body-and-mind/?utm_source=facebookads&utm_medium=cpc&utm_campaign=fb_magheal_b_us

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More Lyme Legislature! Massachusetts House Ways and Means Committee

Dear Friends,

Thanks to your help, the Massachusetts Bill H.4259, An Act Relative to Lyme Disease Treatment Coverage, that would require insurance companies to pay for long-term antibiotic treatment of Lyme disease was referred earlier this week to the MA House Ways and Means Committee! We have had good information that this bill will be considered by the Committee this Thursday, July 17, and that it can still get through and be voted on before this session ends, if we keep the interest high.
 
Do you think that the decision for treatment should NOT be up to your insurance company, and instead be left to you and your physician?


THEN YOUR VOICE NEEDS TO BE HEARD!

 

 
There are very few  weekdays left in this legislative session. We need to push this bill forward! Please CALL, WRITE, E-MAIL or VISIT your representative. Many MA Lyme advocates are also contacting the members the House Ways and Means Committee.
If you are from Southern Berkshire County, Representative Smitty Pignatelli from Lenox, represents you, has co-sponsored H.4259, and sits on the MA House Ways and Means Committee.
 
Find your MA legislators’ contact info at: https://malegislature.gov/people/search
Please reach out to family, friends, and neighbors and ask that they also CALL, WRITE, E-MAIL or VISIT! This legislation, if passed, would let people focus on the fight for their lives and not the fight with their insurance companies.
You are making a difference in the future of Lyme disease treatment. 
 
Thank you!

Karla

 
 
TALKING POINTS
 
1) Where in Massachusetts you are from. They most want to hear from people in their district.
 
2) I vote, and I am in favor of the Lyme Disease Patient Protection Bill, H.4259,

with the edits of the Mass Lyme Disease Legislative Task Force. Please vote in favor of this bill.

3) Why H.4259 is important to you (e.g., I can get the treatment that I need so I can get back to work)

4) Remind your rep that the financial impact study of this bill predicted LITTLE TO NO INCREASE in insurance premiums for the general public.

5) This specific legislation was recommended by the Governor’s Special Commission to Conduct an Investigation and Study of the Incidence and Impacts of Lyme Disease in 2013.

 
 
Sample E-mail 
 
(Please add your own personal note about how Lyme disease has effected you and your loved ones to the beginning of this message)
 
(Just Copy, Paste, and Insert the Rep’s name & your name)
 
Subject: Support H.4259, An Act Relative to Lyme Disease Treatment Coverage & the MA Lyme Legislative Task Force’s Edits
 
Dear <Insert Rep on House Ways and Means>,
 
As one of the thousands of Massachusetts citizens affected by the burgeoning epidemic of Lyme disease, I support the intent of H.4259, An Act Relative to Lyme Disease Treatment Coverage which is currently before your committee. I respectfully request your assistance with H. 4259, as the current wording contains various loopholes that insurance companies could use to deny care to people with Lyme disease.
 
As the intent of the bill is to protect patients’ access to care, it is my hope that you may be able to assist us with implementing the Massachusetts Lyme Legislative Task Force’s essential edits to H. 4259, which serve to tighten up the legal wording.  Without these essential edits, the bill may harm people like me, the very people it is supposed to protect; I need your help. 
 
H. 4259 builds on the Massachusetts Physician Protection Act.  It also fulfills the Massachusetts Special Commission to Conduct an Investigation and Study of the Incidence and Impact of Lyme Disease recommendation for “mandatory Lyme disease insurance coverage to be enacted in Massachusetts.” Importantly, the recent Center for Health and Information Analysis (CHIA) report found that there would be little to no ($0.0) impact on the cost of insurance.
 
Please implement the suggested edits from the Massachusetts Lyme Legislative Task Force and vote favorably on H.4259.  Thank you for your time and consideration. 
 
Respectfully,
 
<insert your NAME and ADDRESS here>
 


Sample Facebook post or e-mail to family/friends:
 
I support H.4259 and the MA Lyme Legislative Task Force Edits. Do you? If
yes, then call 617-722-2990 and let Brian Dempsey, the House Chair of Ways
and Means know!
 
This note could be used when you share the following link to a recently published article, which talks about why this bill is so important. “Massachusetts face to face with Lyme disease patient protection bill:” http://worcestermag.com/2014/07/10/massachusetts-face-face-lyme-disease-patient-protection-bill/25114
 
 
MA House Ways & Means Committee Members
 
<https://malegislature.gov/Committees/House/H34>
If you are from Southern Berkshire County, Representative Smitty Pignatelli from Lenox, represents you, has co-sponsored H.4259, and sits on the MA House Ways and Means Committee.
 
Brian Dempsey, House Chair 617-722-2990
Brian.Dempsey@mahouse.gov
 
Stephen Kulik, House Vice Chair 617-722-2380
Stephen.Kulik@mahouse.gov
 
Matthew Beaton 617-722-2488
Matthew.Beaton@mahouse.gov
 
Michael Brady 617-722-2230
Michael.Brady@mahouse.gov
 
Linda Campbell 617-722-2305
Linda.Campbell@mahouse.gov
 
Christine Canavan 617-722-2575
Christine.Canavan@mahouse.gov
 
Nick Collins 617-722-2080
Nick.Collins@mahouse.gov
 
Viriato deMacedo 617-722-2100
Vinny.deMacedo@mahouse.gov
 
Angelo D’Emilia 617-722-2488
Angelo.D’Emilia@mahouse.gov
 
Geoff Diehl 617-722-2810
Geoff.Diehl@mahouse.gov
 
Carolyn Dykema 617-722-2210
Carolyn.Dykema@mahouse.gov
 
Lori Ehrlich 617-722-2014
Lori.Ehrlich@mahouse.gov
 
Robert Fennell (co-sponsor) 617-722-2575
Robert.Fennell@mahouse.gov
 
Gloria Fox 617-722-2810
Gloria.Fox@mahouse.gov
 
Sean Garballey (co-sponsor) 617-722-2090
Sean.Garballey@mahouse.gov
 
Robert Koczera 617-722-2582
Robert.Koczera@mahouse.gov
 
Timothy Madden (co-sponsor) 617-722-2810
Timothy.Madden@mahouse.gov
 
Paul McMurtry 617-722-2015
Paul.McMurtry@mahouse.gov
 
Kevin Murphy no # listed.
Kevin.Murphy@mahouse.gov
 
Rhonda Nyman 617-722-2210
Rhonda.Nyman@mahouse.gov
 
Thomas Petrolati 617-722-2255
Thomas.Petrolati@mahouse.gov
 
Smitty Pignatelli (co-sponsor) 617-722-2017
Smitty.Pignatelli@mahouse.gov
 
Angelo Scaccia 617-722-2060
Angelo.Scaccia@mahouse.gov
 
Thomas Stanley (co-sponsor) 617-722-2230
Thomas.Stanley@mahouse.gov
 
Walter Timilty 617-722-2230
Walter.Timilty@mahouse.gov
 
Cleon Turner 617-722-2090
Cleon.Turner@mahouse.gov
 
David Vieira 617-722-2230
David.Vieira@mahouse.gov
 
Donald Wong 617-722-2488
Donald.Wong@mahouse.gov
 
House Ways and Means Committee Members email list
 
It is better to send a separate individually addressed email to each Committee member, but if that is too hard for you the entire list is below:
 
Brian.Dempsey@mahouse.govStephen.Kulik@mahouse.gov,Angelo.Scaccia@mahouse.govThomas.Petrolati@mahouse.govChristine.Canavan@mahouse.govKevin.Murphy@mahouse.govThomas.Stanley@mahouse.govCleon.Turner@mahouse.govPaul.McMurtry@mahouse.govSean.Garballey@mahouse.govCarolyn.Dykema@mahouse.govNick.Collins@mahouse.govVinny.deMacedo@mahouse.govMatthew.Beaton@mahouse.govDavid.Vieira@mahouse.gov,Gloria.Fox@mahouse.govRobert.Koczera@mahouse.govRobert.Fennell@mahouse.govWalter.Timilty@mahouse.govSmitty.Pignatelli@mahouse.govLinda.Campbell@mahouse.govLori.Ehrlich@mahouse.govMichael.Brady@mahouse.govTimothy.Madden@mahouse.govRhonda.Nyman@mahouse.govAngelo.D’Emilia@mahouse.govGeoff.Diehl@mahouse.govDonald.Wong@mahouse.gov
Yes, Smitty is a member of the House Ways and Means Committee. He is also a co-sponsor of this bill, and has been helpful with information and advice. He is one of the good guys on this bill! Yes, contact him, and be sure to THANK HIM.

We are asking right now that only constituents contact their reps on House Ways and Means. If Smitty is not your rep, please hold off on contacting right now. In a couple of days, we will have additional alerts, to make sure that no stone is unturned in getting support for this bill.

Thanks!

Sharon

MA Lyme Legislative Task Force

________________________________

Subject: MA LYME BILL ACTION ALERT!

Brian.Dempsey@mahouse.gov<mailto:Brian.Dempsey@mahouse.gov>

Stephen Kulik, House Vice Chair 617-722-2380

Stephen.Kulik@mahouse.gov<mailto:Stephen.Kulik@mahouse.gov>

Matthew Beaton 617-722-2488
Matthew.Beaton@mahouse.gov<mailto:Matthew.Beaton@mahouse.gov>

Michael Brady 617-722-2230
Michael.Brady@mahouse.gov<mailto:Michael.Brady@mahouse.gov>

Linda Campbell 617-722-2305
Linda.Campbell@mahouse.gov<mailto:Linda.Campbell@mahouse.gov>

Christine Canavan 617-722-2575
Christine.Canavan@mahouse.gov<mailto:Christine.Canavan@mahouse.gov>

Nick Collins 617-722-2080
Nick.Collins@mahouse.gov<mailto:Nick.Collins@mahouse.gov>

Viriato deMacedo 617-722-2100
Vinny.deMacedo@mahouse.gov<mailto:Vinny.deMacedo@mahouse.gov>

Angelo D’Emilia 617-722-2488
Angelo.D’Emilia@mahouse.gov<mailto:Angelo.D’Emilia@mahouse.gov>

Geoff Diehl 617-722-2810
Geoff.Diehl@mahouse.gov<mailto:Geoff.Diehl@mahouse.gov>

Carolyn Dykema 617-722-2210
Carolyn.Dykema@mahouse.gov<mailto:Carolyn.Dykema@mahouse.gov>

Lori Ehrlich 617-722-2014
Lori.Ehrlich@mahouse.gov<mailto:Lori.Ehrlich@mahouse.gov>

Robert Fennell (co-sponsor) 617-722-2575
Robert.Fennell@mahouse.gov<mailto:Robert.Fennell@mahouse.gov>

Gloria Fox 617-722-2810
Gloria.Fox@mahouse.gov<mailto:Gloria.Fox@mahouse.gov>

Sean Garballey (co-sponsor) 617-722-2090
Sean.Garballey@mahouse.gov<mailto:Sean.Garballey@mahouse.gov>

Robert Koczera 617-722-2582
Robert.Koczera@mahouse.gov<mailto:Robert.Koczera@mahouse.gov>

Timothy Madden (co-sponsor) 617-722-2810
Timothy.Madden@mahouse.gov<mailto:Timothy.Madden@mahouse.gov>

Paul McMurtry 617-722-2015
Paul.McMurtry@mahouse.gov<mailto:Paul.McMurtry@mahouse.gov>

Kevin Murphy no # listed.

Kevin.Murphy@mahouse.gov<mailto:Kevin.Murphy@mahouse.gov>

Rhonda Nyman 617-722-2210
Rhonda.Nyman@mahouse.gov<mailto:Rhonda.Nyman@mahouse.gov>

Thomas Petrolati 617-722-2255
Thomas.Petrolati@mahouse.gov<mailto:Thomas.Petrolati@mahouse.gov>

Smitty Pignatelli (co-sponsor) 617-722-2017
Smitty.Pignatelli@mahouse.gov<mailto:Smitty.Pignatelli@mahouse.gov>

Angelo Scaccia 617-722-2060
Angelo.Scaccia@mahouse.gov<mailto:Angelo.Scaccia@mahouse.gov>

Thomas Stanley (co-sponsor) 617-722-2230
Thomas.Stanley@mahouse.gov<mailto:Thomas.Stanley@mahouse.gov>

Walter Timilty 617-722-2230
Walter.Timilty@mahouse.gov<mailto:Walter.Timilty@mahouse.gov>

Cleon Turner 617-722-2090
Cleon.Turner@mahouse.gov<mailto:Cleon.Turner@mahouse.gov>

David Vieira 617-722-2230
David.Vieira@mahouse.gov<mailto:David.Vieira@mahouse.gov>

Donald Wong 617-722-2488
Donald.Wong@mahouse.gov<mailto:Donald.Wong@mahouse.gov>

House Ways and Means Committee Members email list

It is better to send a separate individually addressed email to each Committee member, but if that is too hard for you the entire list is below:

Brian.Dempsey@mahouse.gov<mailto:Brian.Dempsey@mahouse.gov>, Stephen.Kulik@mahouse.gov<mailto:Stephen.Kulik@mahouse.gov>, Angelo.Scaccia@mahouse.gov<mailto:Angelo.Scaccia@mahouse.gov>,Thomas.Petrolati@mahouse.gov<mailto:Thomas.Petrolati@mahouse.gov>, Christine.Canavan@mahouse.gov<mailto:Christine.Canavan@mahouse.gov>, Kevin.Murphy@mahouse.gov<mailto:Kevin.Murphy@mahouse.gov>,Thomas.Stanley@mahouse.gov<mailto:Thomas.Stanley@mahouse.gov>, Cleon.Turner@mahouse.gov<mailto:Cleon.Turner@mahouse.gov>, Paul.McMurtry@mahouse.gov<mailto:Paul.McMurtry@mahouse.gov>,Sean.Garballey@mahouse.gov<mailto:Sean.Garballey@mahouse.gov>, Carolyn.Dykema@mahouse.gov<mailto:Carolyn.Dykema@mahouse.gov>, Nick.Collins@mahouse.gov<mailto:Nick.Collins@mahouse.gov>,Vinny.deMacedo@mahouse.gov<mailto:Vinny.deMacedo@mahouse.gov>, Matthew.Beaton@mahouse.gov<mailto:Matthew.Beaton@mahouse.gov>, David.Vieira@mahouse.gov<mailto:David.Vieira@mahouse.gov>,Gloria.Fox@mahouse.gov<mailto:Gloria.Fox@mahouse.gov>, Robert.Koczera@mahouse.gov<mailto:Robert.Koczera@mahouse.gov>, Robert.Fennell@mahouse.gov<mailto:Robert.Fennell@mahouse.gov>,Walter.Timilty@mahouse.gov<mailto:Walter.Timilty@mahouse.gov>, Smitty.Pignatelli@mahouse.gov<mailto:Smitty.Pignatelli@mahouse.gov>, Linda.Campbell@mahouse.gov<mailto:Linda.Campbell@mahouse.gov>,Lori.Ehrlich@mahouse.gov<mailto:Lori.Ehrlich@mahouse.gov>, Michael.Brady@mahouse.gov<mailto:Michael.Brady@mahouse.gov>, Timothy.Madden@mahouse.gov<mailto:Timothy.Madden@mahouse.gov>,Rhonda.Nyman@mahouse.gov<mailto:Rhonda.Nyman@mahouse.gov>, Angelo.D’Emilia@mahouse.gov<mailto:Angelo.D’Emilia@mahouse.gov>, Geoff.Diehl@mahouse.gov<mailto:Geoff.Diehl@mahouse.gov>,Donald.Wong@mahouse.gov<mailto:Donald.Wong@mahouse.gov>

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Lyme Disease Talk – New Lebanon, NY Tues. June 24, 2014

Dear Friends,

I want to invite you to a talk on Lyme Disease Treatment and Prevention with Jennifer Baer Enos, NP and Carolyn Sanford DMV.

7:00 pm
Tuesday, June 24th
New Lebanon Library
550 State Route 20
New Lebanon, NY 12125
Phone: 518-794-8844
Email: leb@taconic.net

Integrative health care professional Jennifer Baer Enos and veterinarian Carolyn Sanford will speak on Lyme Disease Treatment and Prevention. New York State is a hot bed of tick-borne disease, and Columbia County is among the highest areas in the nation with the problem. The speakers will discuss new developments in Lyme and other tick-borne diseases, and also be open to general questions from the audience.

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Survivor’s Guilt

A reader contacted me and asked if I was okay, adding “you haven’t posted anything in a while.”

Frankly, I have been feeling beaucoup better since January.  There have been rare days when I have felt a little achy or fatigued — I’m having some big emotional things going on now, and the fatigue has been a problem — but for the most part I’ve been okay .  This is the longest I’ve been okay.  I was more okay. I felt “restored” for nine months.  This is “pretty good” for 11 months.

I don’t know what to write.  The primary purpose of this blog is “living with Lyme disease” and if it’s not an issue then there’s nothing to write about.  Am I a fake if I keep writing?  Or is this remission?  Should I write about living with Lyme Disease in remission?  I don’t know.   Would that inspire hope in people?  Hope that it will happen for them?  Or outrage because I don’t have a magic answer as to how I got here?

I know we sit around and try to pinpoint what went “wrong.”  I’ve been trying to pinpoint what went “right.”  My summation is this:  I saw a gastro guy. I think I wrote about this recently.  I had a BAD flu 1 year ago.  Explosive diarrhea with fever.  I saw my doctor and she said if it happened again then I needed to see a gastroenterologist.  It happened again.

I had seen a Rheumatologist prior to him who dismissed me as “fibromyalgia.”  (*I believe in Fibro!  Oh YES , I do!  But I also believe it’s a catchall phrase. It’s medical speak for “I give up, so let’s name it something that cannot really be proved or disproved.” * )  Fast-forward to the gastro guy. He saw me. He asked a couple of questions and pressed on my stomach. He left the room and I heard him softly murmur a summary of “me.”  He used the word “fibromyalgia.”  Then?  “Irritable Bowel Syndrome.”  He came back with coupons for Metamucil or something.  He said he’d do a colonoscopy but he says “you have IBS.”  I wanted to cry. I asked if IBS causes fevers and he waved his hand dismissively, while escorting me downstairs to schedule the colonoscopy.  That was it.

But you know what?  I felt like a million bucks after the colonoscopy. I told him so. He asked “did a lot come out?”  I said HELL yes.  And he prescribed the prep.  I take it monthly.  I start getting a bit creaky if I skip a month — by month 2 I’m starting to feel achy.

So my problem started with a tick that I don’t remember and it ended with taking a tremendous $#!t.  Repeatedly.

Does this make sense?  No.  And no one can riddle me why this is working.

Can it work for others? I don’t know.  No one can tell me why it’s working and no one wants to ask someone else or confer or experiment or show me anything that indicates that they would like to find out why.

I don’t know.  Maybe this is just a fluke.

 

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Lyme Disease and Magnesium……….

Oh NO.  Another supplement article.  How many times do we read about a supplement and then add it to our collection?

Well?

First:  read the whole thing and totally inform yourself.  And read other articles on the web.

This might help someone, so I feel obliged to pass it along – all of it, even the contradictions.

I remember someone recommending Magnesium to me to help with my “nerve pain.”  The bottle promised, “supports healthy nerve, muscle and heart function.”  Sold.

It did help enormously .

Well, I happened upon this article:  http://www.lymeinfo.net/magnesium.html  (and if the link fails, copy and paste: http://www.lymeinfo.net/magnesium.html)

It reports that many of us have magnesium deficiency and that symptoms include:

  1. Muscle Cramps
  2. Weakness
  3. Fatigue
  4. Insomnia
  5. Stress intolerance
  6. Heart irregularities
  7. Confusion

Sound familiar?

Magnesium deficiency can also lead to constipation – – this is why Milk of Magnesia contains Magnesium!  That’s partly why epsom salts as a saline laxative work.  So it’s a good digestive aid as well.

What the website I mentioned earlier recommends is (and ASK your doctor first!):

“After an extensive review of the literature, Marnie at online forums has proposed the following treatment for chronic Lyme patients:

MAGNESIUM PROTOCOL:
– Magnesium Malate, approximately 200mg 6 times a day (every 2 hours).
– Sublingual B6, approximately 12mg with each magnesium dose.
– Selenium, approximately 12mcg with each magnesium dose.ADDITIONAL SUGGESTIONS:
– An immune booster such as “Host Defense” or beta glucans.
– Multiple vitamin and mineral supplementation
– A good alkalizing diet”

A good alkalizing diet ……. a good alkalizer is actually none other than Alkaseltzer Gold. It’s hard to find the Gold variety in stores, but it’s none too hard to order it online.

But WAIT: 

Some believe that the Borrelia feed off of magnesium and that is why we become so deficient.  Sooooo……. if you’re someone who opts for the “more is better” ideal, then please remember you may be also feeding what is taking it away.  (Yeah, so I’m contradicting what is written above, but I’m from the camp where I like to supply all information and let YOU decide what to do with it).   This theory that the bacteria feed on the magnesium and therefore steals it from us would explain why my heart was beating so terrifyingly irregularly at the height of my illness.  It explains the muscle twitches, the confusion , the exhaustion …….. all of it.

Some LLMD’s recommend starving yourself of Magnesium when you’re on antibiotics to deprive them of their food as well as killing them with the medications.  So that’s another thing to bear in mind:  where are you in treatment?

Not All Magnesiums are Created Equally: 

Many sources recommend Magnesium Chloride as it is the “most easily absorbed.”

The one in my cupboard now simply says MAGNESIUM.  Looking at the ingredients, however, it says “Magnesium Oxide.”

In terms of dosing, all sources seem to agree to take a little throughout the day; taking too much at once can lead to diarrhea and that appears to be the one side effect everyone agrees on.   Some mention sweating (epsom baths do this to me and that contains a lot of magnesium….. but NOT sweating is my beef with Lyme Disease, so I embrace this side effect with open arms).  Some mention nausea and even vomiting.  If your stools are loose as a general rule then please show special caution.

All seem to concur that keeping an even dose of it in the bloodstream throughout the day can help with your symptoms – – be it nerve pain, fatigue, heart irregularities, etc. – AND squash side effects.

The book, “The Top 10 Lyme Disease Treatments,” states that too much Magnesium can cause us to Herx’.  (*I never read the book , just the free excerpts from the internet…….. here’s some now:  http://books.google.com/books?id=J4TFtQeHkQAC&pg=PA287&lpg=PA287&dq=lyme+disease+and+magnesium+deficiency&source=bl&ots=-sLTa333dq&sig=w-nUwJaM8cjvS5phKJwx1_Rqv3U&hl=en&sa=X&ei=8orSUKbXMc630AH3k4GABQ&ved=0CIoBEOgBMAk#v=onepage&q=lyme%20disease%20and%20magnesium%20deficiency&f=false    Oh, and the book alleges that starving the bacteria of magnesium is “erroneous.”

More:

There are things that magnesium deficiency is alleged to cause or contribute to — Fibromyalgia, Osteoporosis ….. Read more here:  http://www.umm.edu/altmed/articles/magnesium-000313.htm  (or if link fails:  http://www.umm.edu/altmed/articles/magnesium-000313.htm)   It makes me almost wonder if that is why some of us with Lyme had some “spinoff shows” such as Fibromyalgia afterward and other issues they have listed.

If I were to draw my own conclusions, I’d draw the conclusion that it may be best for ME to take Magnesium and help with the symptoms (For goodness sakes!  Especially with matters of the HEART!), and not cut off my nose to spite my face.  But I’m not a doctor.

Anyway, best wishes and good luck with your Magnesium.

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“Is the Vitamin C & Salt Protocol Safe?”

I am able to see search engine terms that bring people to this blog, and the title of this blog is among the most frequent in current trends.

I’m not a doctor, so my word is not the law.   The best and simplest answer is “ask your doctor.”  That sucks, doesn’t it?  You came here for a solid answer and now you’re being directed to your doctor who may or may not believe that you have Lyme Disease, or may believe that you “had it” and the rest of this stuff is in your head.  How dare I turn you back to the unreliable medical community who gives you the run around.

Well?  Let me tell you whyyyyyy.

If your kidneys aren’t perfect then lots of salt is NOT something you ought to be ingesting.  Vitamin C probably isn’t a good idea either, in larger quantities especially.  If you have high blood pressure then increasing your sodium intake in this manner is probably unwise.

See?  There are many compelling reasons why it may not be a good idea.

I’ll tell you what.  I don’t have any of those issues.  I did ask my doctor about it and frankly?  She thought it was silly.  But she insisted I stick with Himalayan salt (as advised by pretty much anyone) and advised me to be careful of heavy metal content.   She reminded me to drink lots of water as well.

So before you go reading things to see if it’s SAFE.  Please ask your doctor.  No one out here in cyberspace can see you and none of us knows your medical history — and frankly, many of us are laypeople who wouldn’t know how to answer your question even if we knew your entire history.  Ask your doctor.  If they give you crap, just fold your arms and say “Humor me.”

Also ask about other supplements you may be taking to make sure there’s no interaction.  Many sites recommend taking Natokinasse for a few days prior to clean your bloodstream; it’s a blood-thinner.  If you are going to take supplements in conjunction with the protocol then ask about those, too.  Nato-zymes may be a bad idea if you’re already on Coumadin or something similar.

If they say it’s okay then PLEASE take a tiny bit at a time and slowly increase.  I herxed pretty badly and hear that I’m not unique.

(***Note:  I’m not a good resource on whether or not it “works.”  I herxed BAD and stopped.  I could not function.  Could not!  So I didn’t see it through to the end or through any recommended length of time.  If you try it then read read read.  Make sure you drink tons of water and eat a detox diet. ****)

 

 

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Oil Pulling & Cold Sores ……..

I had started oil pulling again and felt that “tingling sensation” and saw the bubbling near my lip.  A cold sore was brewing.  I can say that oil pulling expedited the cycle.  It went from minute blisters to a healing scab in three days.

Typically I use Abreva and opted to not use it this time to see what oil pulling would do on its own.  It did what Abreva typically does, only faster.  My son, unfortunately, has been sick.  He’s very talkative and it’s hard to swish for twenty minutes straight without his needing something or having a question, so the success has been stunted.  I imagine, however, that oil pulling AND Abreva would be a powerhouse for cold sores.

I don’t heal very well as a general rule.  Usually bruises stubbornly adhere to my skin long after the bruises of my healthier counterparts.  Cuts and sores take longer to diminish.  Since having Lyme Disease, it’s even worse.    Cold sores – and their scabby aftermath – typically haunt me for a couple of weeks or so.  Three days is VERY fast for me.

The elimination of a stubborn and colossal wart after embarking on oil pulling is another miracle – I had done nearly everything under the sun to get rid of it up until then.    It has not returned.

I have switched from coconut oil (which got rid of the wart) to sunflower oil.  I’m more tolerant of the taste and texture.  It seems to get equal results but for some reason the coconut oil seemed to do more for my complexion.

That’s my 50-cents for the day. Just one more good reason to try oil pulling if you haven’t yet.  🙂

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17 Day Diet Take Two / One Month Later

I have lost 18 lbs.   The first 12 were QUICK, but now it’s slowed down considerably.  And that’s okay.

I actually urinate regularly.  No more camel-hump/potbelly growing and distending throughout the day as I consume liquids.  My bowels are ……. normal!  I have had a couple of IBS incidents in the past month, but I mean that:  just a couple.   Both leaned toward diarrhea.  There’s been zero constipation.

My body retaliated with an acne breakout (but contrasted with Lyme Disease symptoms, that is NOT a big deal), so I started oil pulling again.  My skin cleared up rapidly.  Rapidly.  I’m suspecting there may have been internal candida, too – something I have thought myself to struggle with since all of the antibiotics.  While I did not “herx” with a candida die-off (aside from, perhaps, the acne and initial headaches), my tongue is now a healthy pink color.  Before it had some whitish thing going on …… a telltale sign.

While I have not followed the diet to a T — I had corn on the cob during the first 17 days. I have had pizza (from a place that makes sourdough crust sans yeast).  I have had pasta.  All in moderation.    I had a tiny slice of cake last night, one of exactly two servings of sugar in the past month.  That tiny slice of cake was bliss, but I almost couldn’t finish it.   I could feel my body chemically reacting to it ……. and I can’t articulate that much better.   I have been drinking diet soda, though more moderately.

What I have stuck to:  

1. Two servings of fruit a day

2.  8 Glasses of water

3.  Two servings of probiotics (Greek yogurt [higher in protein] with some polaner all-fruit – no sugar added/sweetened with fruit juice and a hint of lemon extract to make that Greek yogurt sour taste more palatable)

4.  Protein daily — perhaps not as much as I should

5.  Lots of “cleansing veggies.”

6.  BLACK coffee with some ice coffee exceptions that included cream but no sweetener — I can count those exceptions on one hand.

So this is, as they say in A.A., “Progress not perfection.”

My joints have been faintly creaky on occasion, but for the most part ….. nil.

NO nerve pain except that jab in the groin a few weeks back and a couple of pings in my ears.   Had the jab in the crotch not been so epic on the pain scale, I might have forgotten that isolated incident and the ears.

Headaches are gone.

Brain fog?  Gone.

Lyme Disease?: 

My doctor, before referring me to the Rheumatologist, said very clearly “I do not think you have an active infection [Lyme Disease].”  In the ER, when I was brought in with heart attack symptoms last week, the doctor asked about my medical history.  He was surprised that after I was “cleared” of Lyme, no one did another test to prove it.  However?  My first two tests were negative, so I don’t know if I could be convinced.  I would like to just believe my labs and put it to rest, but I don’t know if I could.  How many tests could convince me?  Ten?  I don’t know.

The Rheumatologist did NOT like my Lyme treatment.  My specialist was rather a one hit wonder:  Ceftin.  She tinkered with the dosage and tinkered with the duration of treatment ….. but overall, once I finished my first course which was Doxycycline, it was just Ceftin, Ceftin, Ceftin.  I lost count after 18 months (3 months here, 6 months there ……).   He asked me if I was treated with other medications and listed some, including one I can’t recall that contains Quinine.

So it sounds like some people in the medical community have quietly alleged that I might still be infected — whether through maltreatment or through not being properly ruled out again.  But this is what I despise.  There is NO protocol at a higher level for doctors to follow.   Hence?   No one is on the same page.  It also seems like one line of treatment might be effective for one person but not for another.  I think this should be studied, too, so that there can be a Plan A, Plan B and so forth.

I googled “Lyme Research Grants” and came up with multitudes of monies offered to people who have a good game plan and proper qualifications.  While I think we’ve come a way since my diagnosis in terms of education, I think there’s a lonnnnnnnnnng way to go.    And with all these research grants out there, why are we still ‘here?’

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17 Day Diet Take Two: Day 10 – and Info about Leaky Gut Syndrome

I have not update my progress in a while. So here I am!

I have lost 12 lbs. Six pounds were in the first two days, so I’m trying not to think of timelines and feeling discouraged by the daily ounces I’ve been losing.

The other day at work, the elevator was broken. I work on the 5th floor. Miracle of miracles: I could do the stairs!!! Toward the end of the day, I had to back down some of the stairs because my knees were rebelling, but for the most part I was up to it. I probably did the 5 flights of stairs FOUR or FIVE times.

I mowed the lawn the other day, and if you’re a regular reader you may be aware that I have done this before. Well? This time it didn’t feel so much like work and I did not have to uncurl my hands afterward.

At the end of a day I sometimes feel very sleepy, but it is the kind of sleepy one feels after having worked and not the Lyme-caliber fatigue. My headaches are gone. My tongue is now PINK and not white (an indicator of internal candida). On occasion I have had a little jab of nerve pain. Another improvement is my menstrual cycle. It is less heavy and clotty [TMI? Sorry!] I have cramps again, which is bad news in its own right, but a spin of normalcy on anything I do is GOOD.

In six days I am scheduled to see the rheumatologist and I do not have much to report. My singular symptom – that’s worsening – is floaters. The computer screen looks like it’s pulsating and moving with “molecules” and squiggly lines. I don’t know if this is some sort of herx reaction? [PS. Forgive me if there are typos in here or little grammatical hiccups — I am relying on the red squiggly underlines to tip me off because it’s difficult to read lately ]

What I’m wondering is if I have a food sensitivity as well. I have read a lot of about Leaky Gut Syndrome, happening upon the condition by accident during my research. If you’re wondering what “leaky gut syndrome” is, it’s damage to the intestinal lining. How does this tie into Lyme Disease?

Some Leading Causes of Leaky Gut:
1. Lots of antibiotics
2. Lots of NSAID medications such as Naproxen or Ibuprofen
3. Caffeine

Lots of us lymies are “guilty” of that. Don’t we sometimes get carried away with the caffeine when we’re in a big bout of fatigue? Don’t we take pain medications for our joint pain and other malaise? Antibiotics go without saying. I, myself, lost count after 18 months (3 months here, 6 months there).

When the lining of the intestines are in good working order, they have little gaps in the cells that permit vitamins and nutrition to seep through into our blood stream. When they are damaged, the cellular gaps expand and other things can get through such as food particles and gut bacteria – both good and bad.

Symptoms are often confused with food allergies, MS, Rheumatoid Arthritis, and skin conditions.

Leaky Gut Symptoms:

1. Bloating
2. Gas & cramps
3. Abdominal pain
4. Joint pain
5. Neurological symptoms
6. Food sensitivities
7. Acne
8. Fatigue
9. Brain Fog
10. Constipation
11. Heartburn
12. Gum Disease
13. Depression
14. Autoimmune Deficiency
15. ADD
16. Dermatitis such as Eczema and Psoriasis
17. Headaches and migraines
18. Systemic Candida (nail fungus, etc.)
19. Colitis
20. Celiac Disease
21. Thyroid conditions
22. Crohn’s Disease
23. Arthritis

Here’s one article about it: [if link fails, try to copy and paste this: http://www.leakygutsymptoms.com/%5D

Notice that the symptoms increase in severity?

I have read many articles about it and the consensus seems to be:

1. The symptoms – and that they increase in severity
2. Treatment – Addresses the CAUSE of the intestinal permeability. Often it has to do with nutrition. This is like an elimination diet so that the intestines may heal. This is a good resource: [links sometimes fail me! If this doesn’t work, copy and paste: http://www.liverdoctor.com/liver-problems/leaky-gut ]
3. The medical community seems divided over the authenticity of the existence of Leaky Gut, so treatment usually falls on the patient or the Holistic / Natural Medicine community

I am mentioning this because if you are new to Lyme Disease and are on antibiotics then you may want to consider going on a cleansing diet to prevent this happening to you. If you take lots of antibiotics and eat lots of refined foods, sugars, yeast, wheat, et al, you are feeding the bacteria you are trying to kill and also making a happier home for yeast inside your gut. Make sure you consume plenty of probiotics, and try to consume ones with MANY different cultures not limiting yourself to the typical acidophilus.

What Made Me Happen Upon Leaky Gut?

Well? I was at work with a client the other day and my mouth became very dry. I could not get something to drink that very moment so I grabbed a couple of mints on my desk. The mints came from our Health Insurance company in a package with their logo so there was no list of ingredients and such. I suspected they may have sugar, but they’re the size of baby aspirin and I was THIRSTY. It brought me relief but I almost promptly became bloated. My stomach, by the end of the day, was rather distended. The mint was certainly the trigger.

I googled “mints and bloating” and came to find Sorbitol is a common ingredient that many are sensitive to and that it causes bloating. Here is an article if it interests you: And here’s a copy and paste option for you: http://www.foodintolerances.com.au/food-intolerances-sorbitol.aspx

Reading about it over and over, I came to find the term “leaky gut syndrome” attached. That led me on another tangent.

So here I am. Perhaps it is leaky gut. Perhaps it is not. But I am DEFINITELY doing better physically on this diet. Mentally too. Emotionally too. I highly recommend it!

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