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 lying 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).
Red- Current and unrelenting
Black- Past or single occurrence (Note: Possibly latent)
-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).
-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)
-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)
-Unexplained menstrual pain and irregularity
-Tingling in hands/feet/face (I thought maybe I had MS -Multiple Sclerosis because of the random “tingling” – The face has tingling & numbness around lips and jaw bone upon touch and considerably more noticeable in cold weather)
-Dizziness/increased motion sickness (Occurs every few days randomly)
-Headaches/Migraines (I get them a few times a year for a week straight)
-Fainting (I had my blood drawn and entirely blacked out)
-Vertigo (Two single occurrences)
-Vivid dreams and nightmares (Fall 2008)
-Difficulty falling asleep and insomnia
Head, Face, & Neck:
-Lump in throat sensation (It will randomly feel like I have a golf ball or large-size piece of food stuck in my throat)
-Asymmetrical tonsil (On right side of mouth – Dr. states it looks and feels the “size of a grape”)
-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)
-Facial flushing (MRI showed inflammation in cheeks)
-Random nose bleeds (Occur twice a year for a week-long stretch and will gush – Last time I went to the ER)
-Extreme dry mouth (Cotton mouth, and it doesn’t matter how much water I drink)
-“Tired” dry eyes and tear ducts (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.
-Oversensitivity to light (I now have to wear a hat with a visor all the time and sunglasses)
-Worsened vision (Blurry, worse at night. Developed astigmatism)
-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)
-Oversensitivity to sound
-Unusual abdominal cramping (This has happened a couple times. I will get pain in my abdominal region when I am not on my period)
-Extreme sensitivity to heat and cold (When others are warm, I am uncomfortably hot and sweaty, and when others are comfortable, I am cold)
-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 the normal person)
-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 fatigue (varies day-by-day and can strike out of nowhere)
-Unexplained weight changes (Extreme gain and loss — fluctuates between 118 and 136 lbs and changes in a very short periods of time)
-Enlarged neck/throat (lymph) glands (Especially when I work out, even minimally, ie: lifting dumbbells for a half hour)
-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)
-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).
-Abnormal ANA titer 3x (Negative for rheumatoid factor, ie: scloderma, lupus, arthritis, etc.)
-Hypothyroidism (NOT Hashimoto’s)
-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)
-Dandruff (I have never had a problem with dandruff until now)
My symptoms have mocked: HIV, MS (Multiple Sclerosis), Carpal Tunnel Syndrome, Arthritis, Meniere’s disease, TMJ, Fibromyalgia, CFS (Chronic Fatigue Syndrome), Mono (Epstein-Barr), Mumps, Babesia, Sjogrens Syndrome, etc.
A reader believes that I am having cardiac problems resulting from late stage lyme disease. He wants me to be on cautious of a heart attack. I am having major ear-node pain. When the pain is really bad, it extends to my upper jaw. The pain comes and goes and its intensity varies from a 3 to 5 on 1-5 scale with 5 being the most severe. I also get occasional hand-joint pain, in the hand and fingers. My ear also buzzes and rings for about 20 seconds a few times a week. Most of my symptoms for some reason seem to be worse on the right side of my body.
I also have an asymmetrical tonsil inside my throat, which I first noticed about 1 year after I had become sick. Dr’s have wanted to conduct a CT SCAN to see if it could be a growth or tumor, but I am trying to avoid this due to the high radiation exposure. The CT SCAN is the last thing I would like to do.
Fatigue comes and goes and is extreme. I can be tired after having done only one thing. A walk around the corner can leave me exhausted. Whenever I try working out with 10 lb dumbbells I end up with swollen lymph glands in the neck and throat. Sleep doesn’t make a difference. I get about 8-9 hours of sleep on average. I fall asleep between 12 a.m., sometimes between 1-2 a.m.
So in summary, ear-node pain (when intense, extends to the jaw), joint pain (hand/fingers), buzzing in ear, headaches, and extreme fatigue are the major symptoms. There are several others. The pain is unbearable.
PS- Project Greenlife just agreed to send me a new supply of MMS. I should receive it within 7 days and can resume my self-administered treatment.
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.
I spoke with my “mother” today; miss Judy Lynn Downham, and she is threatening to sue me for asking her for help with my lyme and for posting the fact that my “family” won’t help me on facebook and on this journal! She is nuts!
At any rate, I have had to delete all of my “family” and friends off of facebook because she will use any of the information she can get her hands on, including them, to use against me. She is narcissistic and even my father stated this and used it in court to testify against her and her child abuse. She tried taking him for all of the house assets, etc.
She called me today and wanted specifics on how much I owe on student loans and how much her husband co-signed for. She also said she wanted to see my health records. She claimed that I was “harassing, slandering, and blackmailing her,” which I am not. She is literally throwing out words to gain the upper hand.
She can shell out hundreds of dollars to my brother and possibly sister yet she refuses to help me with anything. I have not even asked her for anything in literally years. She is obsessed with maintaining power and control and only uses Jerry. I am now convinced that she has him wrapped around her pretty little finger. The fact is, she is sick. She threatened suicide after cheating on my father. She is emotionally unstable.
At any rate, I am like a worn out shoe to her… she pawns her stuff off on me. Everything is about reputation, and it always has been. I am not sending her any records. I will post my test results on here. I am not going to send her records only to have her use them against me as further evidence that I am “harassing” her. She is absolutely nuts.
I am going to pay for my own lyme treatment. I am selling my car.