XMRV, Lyme Disease, and Chronic Fatigue Syndrome – CFS. MMS WILL TREAT.

As everyone may or may not be aware of the fact that I have lyme disease, specifically chronic lyme disease.  I did a posting on this a year or two ago and how I believed lyme to be linked with the “XMRV” virus before researchers even made the connection (my entry dates back, before the research).

I want to get tested for the XMRV virus (it is said to cause lyme disease, fibromylagia, chronic fatigue syndrome – CFS, ms, etc).  It is the root cause of these chronic diseases.  Unfortunately there isn’t a standardized test for XMRV yet, not that the government will pay for anyway.  There is an excellent lab by the Whitmoore association, but the test costs $600.  As I stated, it is not covered under insurance.

I have had a return of lyme, or “XMRV” symptoms since I stopped taking the MMS… the MMS was the only “drug” (all natural) that seemed to keep my CFS/lyme/XMRV under control… I am going to once again resume taking it, every single day for 5-8 hours per day.  I also would like to get my follow-up lyme test that I have been talking about, but I cannot afford that, either, which is also out-of-pocket, $200.00, tests #188 and 189.

A lot is going on in my life right now, and the health issues are once again surfacing.  My most recent blood test, from 6/11/12 states:

Hematocrit 47.0 H
MCHC 31.7 L
MPV 10.8 H
Neutrophils 40 L
Lymphocytes 51 H
Thyroid TSH .05 L

My results are once again, since I have stopped taking MMS, out-of-whack.

Anyone who would like to connect with me is welcome to send me a Facebook message.  Search for “Emily Anne Cox,” or emilyacox@aol.com.  I won’t approve your friend-request without a personal message.  I also have a youtube series “MMS- Magical Mineral Solution.”  My username is Not2bforgot10

I look forward to hearing from you!

I will continue to advocate for my health and learn more about my condition and ways to improve my health.  I will be resuming my MMS – Magical Mineral Solution A.K.A. “Water purification drops” to treat my lyme/fibro/XMRV.

MMS Update – 94 Days (3 months, 2 days) – Thyroid medication conflicts!

I am still taking the MMS every day, but for the past 14 days or so I have been taking about about 5 drops versus the recommended 8 (1 drop per hour, working your way up to 3 per hour).  The reason for this: Concern.  Three things have been happening:

My thyroid scores (which have been normal since I’ve been taking Synthroid to stimulate thyroid hormone) have gone back to hypothyroid, making me wonder whether the MMS may be effecting the adsorption of the medication; two, I have been very bloated, retaining I would assume water and salt, which I believe to be from the MMS, which is primarily salt, and three, I have been super tired and sluggish – another symptom of hypothyroid.

My thyroid, with the thyroid replacement hormone, was functioning fine before I started taking MMS.  Since taking MMS, the symptoms of hypothyroidism have come back, making me miserable – ie, huge bloating (most noticeable in stomach, then face, then fingers – making me look heavier than I am), fatigue/sluggish, etc.

It’s a paradox however because the MMS seems to be working to kill off many of my other symptoms, including:

-Hot and cold flashes (Occurs periodically often while laying in bed, or perhaps that’s when I notice it most like many of the other symptoms)
-Extreme dry mouth (Cotton mouth, and it doesn’t matter how much water I drink)
-Lump in throat sensation (It will randomly feel like I have a golf ball or large-size piece of food stuck in my throat)
-Mouth sores (I get little canker sores — clear bubbles in my mouth at random times — usually a single or couple bubbles at once typically behind my front bottom lip)
-Neck/shoulder pain (I will often wake up with EXTREME stiffness in my neck/shoulder area and my neck/shoulders will just randomly burn, especially at night)
-Enlarged neck/throat (lymph) glands (Especially when I work out, even minimally, ie: lifting dumbbells for a half hour)
-Tingling in hands/feet/face (I thought maybe I had MS -Multiple Sclerosis because of the random “tingling”)
-Foul-smelling boogers (Sounds strange, but is definitely something I have noticed since very early on when I became sick).
-Continual, re-occurring, slow healing infections (I get a lot in my fingers)

Since taking MMS, the symptoms listed above have gone from occurring frequently to rarely.  I will still keep my eye open on their occurrence and frequency.

I am torn at the moment in terms of which action to take, ie: continue taking MMS and continue to getting more bloated (It’s making me look 15 pounds heavier than I am) and allow it to effect my thyroid to where I am exhausted every day, or not take it and run the risk of all my symptoms returning and my lyme bacteria forming “cysts” (right now they should be in the non-cyst form because I have been “aiming ‘bullets'” at them so-to-speak with the MMS, and I had not taken any other medication before to try and fight off the infection, so they received a straight shot of MMS, which I have continually been pumping into my body now for the past 3 months.

I do not want to stop taking it and make a mistake, but the effecting my thyroid absorption is very problematic and all of the symptoms that go along with that alone!  I almost feel like I am stuck in a catch-22 – like I either have to have hypothyroidism (which is bad – many of my symptoms alone are related to hypothyroidism by itself) or have lyme disease, which is even worse.  So basically I feel like I need to rid my lyme (most importantly) but in the meantime I am struggling with hypothyroidism because the MMS appears to be messing the absorption up!

With that being said, I feel like I cannot win… I wish there was something out there just as powerful as MMS that did not conflict with my thyroid medication… even if I knew of something though, I have already started the MMS, and I trust that it’s working so I don’t think I would want to take it.  Stuck!

Emily’s Symptoms:

Current/Unresolved Issues:

-Ear-node pain (Constant dull, aching pain behind ears – random times for intermittent hour-stretches of time – when it is really bad, it extends to the upper jaw, causing me to clench both my teeth/jaws and hands, then I get a headache, and then my upper back and neck start throbbing, knotting, and burning)
-Buzzing in ears (Occurs in 1 ear at a time and is known to occur in both ears, though it happens 75% more of the time in right ear)
-Asymmetrical tonsil (On right side of mouth – Dr. states it looks and feels the “size of a grape”)
-Joint pain in hands/fingers (Occurs in both hands, though slightly more painful on the right side.  Was x-ray for arthritis twice  – both negative).
-“Tired,” dry eyes and tear ducts daily (Eye doctor said that my tear ducts dry up every “2 seconds” instead of “13” seconds.  Additionally, my eyes have lost their “vitality,” ie: vivid/whiteness, and sometimes by the end of the night I look stoned when I am not even around smoke or anything to irritate my eyes.  This also effects my ability to ride a bicycle because of the dry air)
-Extreme fatigue (varies day-by-day and can strike out of nowhere)
-Abnormal ANA titer 3x (Negative for rheumatoid factor, ie: scloderma, lupus, arthritis, etc.)
-Hypothyroidism (NOT Hashimoto’s)
-Dizziness/increased motion sickness (Occurs every few days randomly)
-Extreme sensitivity to heat and cold (When others are warm, I am uncomfortably hot and sweaty, and when others are comfortable, I am cold)
-Unexplained hair loss (Every time I take a shower, more hair sheds than necessary)
-Dry hair (feels like straw)
-Brittle nails (they no longer grow)
-Oversensitivity to light (I now have to wear a hat with a visor all the time and sunglasses)
-Facial flushing (MRI showed inflammation in cheeks)
-Unexplained weight changes (Extreme gain and loss — fluctuates between 118 and 136 lbs and changes in a very short periods of time)

Note:  All symptoms started Fall 2007.  Most symptoms occur worse on the right lateral part of my body, but all symptoms are unilateral.  I am more inclined to notice symptoms while laying in bed at night and in the morning although they occur during the day and are noticeable, but I am trying to stay busy and function (very difficult).  I often stay home because I am so tired and ache (ear-node/jaw/back/neck/shoulder).

Recent Past (Latent?):

-Hot and cold flashes (Occurs periodically often while laying in bed, or perhaps that’s when I notice it most like many of the other symptoms)
-Extreme dry mouth (Cotton mouth, and it doesn’t matter how much water I drink)
-Lump in throat sensation (It will randomly feel like I have a golf ball or large-size piece of food stuck in my throat)
-Mouth sores (I get little canker sores — clear bubbles in my mouth at random times — usually a single or couple bubbles at once typically behind my front bottom lip)
-Headaches/Migraines (I get them a few times a year for a week straight – Note:  At a separate time when I get the nosebleeds)
-Neck/shoulder pain (I will often wake up with EXTREME stiffness in my neck/shoulder area and my neck/shoulders will just randomly burn, especially at night)
-Enlarged neck/throat (lymph) glands (Especially when I work out, even minimally, ie: lifting dumbbells for a half hour)
-Tingling in hands/feet/face (I thought maybe I had MS -Multiple Sclerosis because of the random “tingling”)
-Foul-smelling boogers (Sounds strange, but is definitely something I have noticed since very early on when I became sick).
-Continual, re-occurring, slow healing infections (I get a lot in my fingers)
-Night sweats (Mostly occurred in 2008, but should not be ruled out because they occurred frequently)
-Cold hands, feet, and nose (Occurs in fall and winter and is out-of-proportion compared to every person in the room)

-Random nose bleeds (Occur twice a year for a week-long stretch and will gush – Last time I went to the ER)
-Vision difficulties (Worsened, blurry far away vision – worse at night; developed a slight astigmatism)
-Increased anxiety
-Increased panic in crowded places
-Difficulty falling asleep and insomnia
-Increasing depression
-Vivid dreams and nightmares
-Allergies/Sensitivities (I have developed an allergy to dust and developed food sensitivity to blackberries and some soy-made products)
-Random rashes (Allergies?  I have eaten the foods before and never developed a rash – now I am getting more rashes when I eat things.  The last rash was on my left kneecap, which did not subside with Benedryl “quick strip.”  The rash remained on my leg for 3 solid days and was triangle-shaped).
-Weakness in limbs (This has occurred twice.  I was so weak I could not even get up, and I thought I might have to be admitted to the ER.  Also at this time I was sweating – DRENCHED profusely)
-Fainting (I had my blood drawn and entirely blacked out)
-Dandruff (I have never had dandruff my entire life)
-Unexplained menstrual pain and irregularity
-Unusual abdominal cramping (This has happened a couple times. I will get pain in my abdominal region when I am not on my period)

June 19th, 2011. MMS Update – 90 days.

-Need to get back to structure so that I can continue to take MMS consistently
-MMS taste still awful!
-I take it with water for effectiveness
-Ear-node pain the most pressing symptom (MRI approval pending)
-Boogers no longer smell; less finger and finger nail infections (MMS is definitely working here)

Bloating has occurred because stomach looks fat yet my weight is 121-122 lbs!  MMS causing possible water retention?  (Making me not want to use it) – Going to try doing some sit ups and seeing if it helps…

Over all, seems to be working!

March 13th, 2011. Exhausted.

I am tired and exhausted and just want to sleep.  Erin and I were going to go to a coffee shop tonight, and I am too pooped.  Speaking of “coffee shops,” I want to explore other coffee shops in the area, as I am getting tired of the three that I’ve been to – Chapter House, Bean Cafe, and Starbucks.  I am even tired of Borders which is forever away and full of a bunch of homeless people and PC-users.

I am going to look up coffee shops here soon.  There has to be an intimate one in the area.  Chapter House is okay, but it’s crowded and modern and doesn’t really have the “bohemian” feel I am looking for.  “Bohemian” may not even be the word… it’s just too modern and too crowded and you get a lot of college students.  There are however plenty of mac users, which is good, but it’s all young college folks.

I miss the coffee shops in Burlington which are very down-to-earth, artsy, and intellectual.  I miss that feel.  They would have real local trees as their coffee tables and plants all around.  They would often have live music…. there was a very authentic feel.  I miss that… speaking of “Burlington,” I was going through my stuff today, putting stuff away, and I found the popular, tourist, cartoon-style map of Burlington from when we went on our trip a couple of weeks ago.  I was tempted to cut it out and put it on the wall but didn’t want anymore clutter on the wall.  I then thought of another idea:  Framing it!

I thought to myself, “I need to feel like I’m at home when I’m in recovery,” and so it occurred to me that I could frame it.  I haven’t framed it yet, but it’s just a passing thought.  I probably would have by now, but I am exhausted.  This is part of being ill; I am always tired.  Granted, I did not get proper sleep last night, which complicates matters, but over all, I am not as energetic as I would like to be.  Aside from lacking the energy, I am often in excruciating pain.  I always have pain behind my ears… where the bone and jaw meet.  It’s this dull, aching pain constantly… it often hurts so bad that I clench, both my hands and jaw, which then causes me a headache and eventually a migraine.

The ear/jaw bone pain is always there.  2 years ago I thought that by removing my wisdom teeth the pain would be eradicated but it didn’t make a difference; it remains.  This pain started when I was in a very stressful, abusive relationship back in the fall of 2007.  It has come and gone, but now it is pretty steady.  I want to put a hot packet on it constantly to soothe it, but it only works so well.

I am also super duper sensitive to the heat and cold and have major heat and cold intolerance.  When most people are wearing sweatshirts I am bundled up in a winter jacket, gloves, and a hat.  When people are warm, I am extremely hot and need the AC.  My eyes are also slightly yellow and “sick” looking — they have been this way since fall 2008 when I first became sick.  I get fevers, the sweats, tingling in my hands, face, and feet.  I am miserable.  I have increased anxiety, depression, insomnia…

My mouth is always dry like cotton mouth, and it doesn’t matter how much water I drink; it won’t quell my dry mouth.  I am constantly getting infections… especially in my fingers and nose.  I am sick, and this lyme bacteria is killing me.  The list goes on and is actually quite detailed.  I have been tracking my symptoms steadily for 3-months now using a tracker.  Granted, if I wanted to, I could go back through all of my old medical notes, but I barely have the energy to do that.

I want to get better, to feel better, and to be revitalized again.  I want my health back!

XMRV virus — Common link? (Suspected this 1 year ago – preliminary research).

At first I noticed there was a positive link for XMRV in patients with CFS
Then, after having been diagnosed with LYME disease, I wondered if there is a positive link for XMRV with lyme patients.  One statistic from a personal message board stated that approximately “40% of XMRV suffers have lyme disease.”

I originally, shortly (within a few weeks) before suspecting I had lyme disease suspected I have CFS (Chronic Fatigue Syndrome).

In late July or August of 2010 when I was researching CFS I discovered the connection between XMRV and CFS.

Now that I am diagnosed with Chronic Lyme Disease and still fit all of the diagnostic criteria for CFS, I am wondering if I might be carrying the XMRV virus.  I believe that studies should be conducted on lyme individuals confirming and measuring the percentage of those infected with the XMRV virus and additionally, those with XMRV tested through IGENIX –the top lab for lyme disease.

In addition to my strongly-held belief of all lyme patients needing to get tested for the XMRV virus and the XMRV virus folks getting tested for lyme (via IGENIX), I am wondering if perhaps (this is my hypothesis) many lyme patients are not recovering and/or are having relapses because their “lyme” is being treated and not their XMRV.

I strongly believe and could write a paper on the notion that XMRV is responsible for many (percentage I am not sure) lyme disease suffrage.  Additionally, is there a drug that will treat XMRV and/or lyme disease?  XMRV is a retrograde virus, meaning it encodes itself in the DNA:  Could this be the same, or similar to the borrelia spiroc “embedding” themselves in the cells and tissues?  Could the borrelia spiroc carry the XMRV virus?


What are the negative effects of XMRV?
How is XMRV transmitted?  As of right now, I believe that one way it is transmitted is sexually via breast milk, etc., and I have read that there is possible transmission via ticks, mice, etc.  I do NOT believe that XMRV is genetic.  I strongly believe it (one mode anyway) is passed sexually via breast milk and am open to learning about additional ways.

So if one, like myself, believe that XMRV is at the bottom of this then shouldn’t drugs, ie: medications be looked at on how to treat XMRV?  Basically my best route now would be to look for and hope that some of these “lyme” treatments work for XMRV!

Which lyme disease medications have been known or suspected to additionally work to treat XMRV?

I am curious as to whether or not there is a research trial that I can get involved with and be tested on.

March 4th, 2011. Positive for LYME disease.

As of 11:30AM today, test results confirm that I am positive for Chronic (stage 3 – late stage) LYME disease. Finally an ANSWER to this 3 year madness! Unfortunately many ID’s (infectious disease) specialists will only treat LYME for 4 weeks, failing recognize “late stage” (chronic) LYME, thus under-treating clients to where the clients relapse. I am going straight to an LLMD — Lyme Literate MD. The treatment will cost a few thousand dollars.

February 1st, 2011. Dr’s visit/Erin/Show tonight.

I went to the dr. today to get my blood drawn and they drew everything but the Lyme test.  The facility refused to use the Lyme kit I obtained from Igenix, a state-of-the-art Lyme facility, in Palo Alto, CA, stating that they do not typically send blood “elsewhere.”  I now have to try and go to another facility to get it tested and sent off.  Mind you, I am paying for this test privately because insurance does not cover it.  The test is very specific and has to be performed on a Monday, Tuesday, or Wednesday due to its contents needed arrival time at the facility.

On my walk back home, I recorded my thoughts…

“I’m so tired of life and this situation and it just seems so unreal.”
“There isn’t much left for me –Erin is moving on, and I just seem to be falling behind…”
“I came here with the intent to find work prospects, and it’s just ended in disaster.”
“I don’t feel much of anything, and things just seem unreal…”
“People are out working hard, and I just feel like I’m falling by the wayside.”
“Colors are bright; noises are bright.”
“At times it feels like it’s all a dream, and I’m going to wake up, and reality is going to hit me…”
“I know that it’s real, but it seems baffling, and I wonder how the hell did I get myself in this situation.”
“There is little left and colors just seem to fade.”
“I am going out tonight, and I am not even excited.  Life seems to have lost its shine.”
“I am ready to feel something, not nothing.”
“The world looks so decadent.”
“I see people that live passionately, and I envy that, and I want it; it’s good to see it, but it just reminds me of where I am now, and how I don’t have it.”
“I can’t possibly know what’s best for me when I’ve fallen this low.”
“I’m tired of feeling this way –so down and out… life is meant to be enjoyed, not despised.”
“I’m tired of hiding in the shadows; I want to say I’m “finished” with my past, but the reality is, it will keep coming up, and I just have to work through it.”
“The only way out is “through,” and I will just keep on plugging.”
“Why do we try so hard to make our lives perfect; I know for myself I learned “perfectionism” very early on… the fact is, life is not perfect.  Perfection only leads to failure.”
“I’m tired of living some mediocre life.”
“I would like to re-capture my essence and be resurrected.”

I think it is apparent that I am depressed.  Like, right now for instance, I am exhausted, and I just want to sleep… but I know that if I sleep I might be groggy for the rest of the evening.  I am supposed to be going out tonight to a Soul Harvest –an open mic/poetry event.  I’m going with a “Sister’s” meetup group here in Philadelphia that promotes sisterhood.  We’re all going out to eat beforehand.  I am exhausted though and just want to sleep… I am excited to go, but tired and depressed.  Erin has been gone all day at a training so that she can become “serve safe;” it is required by her employer.  By the time she gets home I will be leaving to go to the event and will not return until late.

I am depressed and annoyed that Erin has more fun with other people than me, yet she has not even tried to have fun with me.  I am still so angry at the relationship… at the fact that she pursued me until she “got” me and once she had me she became a self-absorbed prick –porn-ridden and fantasy-obsessed.  Do you know how much of a slap in the face this was?  Imagine it still being because the heart has not mended.  It’s just like grief, only it’s prolonged, and it’s making me sick… I want to get away, yet I don’t, because I want to “fix” things.  I hate that my “fixing” instincts are coming into play… I don’t want them to.  I just want to walk away from her.  My instincts apparently are stronger than my own self-control.

I know that I cannot make this relationship okay, and the simple truth is, is that it’s not okay and it may never be.  Why do I spend my life trying to “fix” things?  One cannot fix what’s broken… it would seem that only time, growth, and healing can do that.  I do not see myself healing anytime soon because I am, for whatever reason, too afraid to leave this situation behind.  Why is it so difficult to walk away?  I am going to end up having to be forced to walk away because I cannot pull myself to do it because of the perceived failure.  I was in this situation once before when I went back to Vermont for two months back in August, and I am in it again, only this time it’s due to my own free-will, or unresolved grief, whereas before it was because Erin was trying to retain some power-trip.

Anyway, she has time for everything but me and has little desire to spend time with me… such a 180 compared to when we first started dating up until I said, “Yes” to her marriage proposal.  And yes, that was very premature on my part, and no, I did not end up marrying her –thank God!  She is a sucker and would have bled me dry.  At any rate, I cannot “keep” her as far as I can throw her.  It is hard enough being in this situation and being unable to let go when I am constantly reminded of things that have happened and been unresolved.  Things keep happening with Erin, and I am triggered all over again.

It is so sad to know that nothing I do can change anything… no single action, no series of multiple actions… I also need to remind myself that I did not do anything wrong except maybe “enable” by staying too long.  I should have left the moment I saw the first red flag.  I didn’t however, and now I am finding myself with someone very lousy, unable to even be a decent person (honesty, respect, communication, accountability, and dependability) and I am too stupid to walk away and would rather hold out on the empty “promises.”  ie, “Emily, I will follow-through; I won’t yell and rant, etc.”  It’s all a joke, and yet I still hope for it and hold onto it because it’s the only way to make living here together remotely “manageable.”

I feel like a fucking object because I was pursued and then just dropped like a hat.  Erin has some major problems, and I’m not sure what that says about me other than I must have some serious self-esteem issues and “need to be needed” for me to continue putting up with this behavior.  Honestly, what does that say about me?  I should just start telling myself and actually trying to believe it that Erin does not deserve me, because the fact is, she doesn’t.  She is a coward (literally) and manipulative.  Me needing/wanting to feel special should not be enough of a silly “reason” to stay… I think once I start treating myself with respect, ie: walking away from unhealthy people and making better, wiser choices for myself, I will start attracting respect.

What this says to me is “door!”  I need to somehow head for the door and stop deluding myself into believing that she will “come around.”  I am not wanting some magical cure… I am not idealizing her.  I am not trying to “change” her, either.  I am not telling her that she can’t do things.  I am simply wanting, demanding honesty, respect, communication, accountability, and commitment (to self) and she refuses to be able to deliver.  If I wasn’t living here then I would say the “hell” with her, and I would have cut her off by now, but while living here, I am trying to make the most out of the situation.

Nevertheless, all of this self-denial will exhaust a person, and I am beyond that point.  I am going to lay down now and close my eyes I think… I just want the hours to pass… I just hope that I am still in the mood to go tonight… I really have no interest in anything except for sleep.  I enjoy dreaming.