CFS: My Improvements as a Mold/Lyme Warrior

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Jun 17, 2008.

  1. Slayadragon

    Slayadragon New Member

    It's been a bit more than six months since I discovered that my house had a problem with poison mold. My husband and I immediately moved out, leaving every single thing we owned behind.

    Since then, I've been practicing strict mold avoidance. Identifying mold has been easy (I now get anaphylactic-type reactions such as rapid heartbeat, increased blood pressure, nausea and spaciness when I'm near any mold poison), though avoiding it has taken work.

    (Note that I'm pretty diligent about this, but not nearly as much so as Erik. I admire him for his attention to detail, but unfortunately that's not my personality strength. Perhaps with additional measures I will get to the point where I can feel really good with only moderate attention to avoidance of mold, though we shall see.)

    I also have been engaging in aggressive detoxification. Things I've tried include intravenous Vitamin C, cholestyramine/questran, fish/flax oil and noni juice.

    The cholestyramine and fish oil (especially when combined) give an intense and difficult detox reaction that goes on for a while. I'm not absolutely sure how much it helps me in the long run, and have just done it sporadically.

    The Vitamin C IV's have been great! They improve my functioning to almost 100% a good bit of the time, and (as long as the dose doesn't go to high) always improve it a lot. My sensitivity to poison mold goes down a whole lot in response to them too.

    I'm currently doing the IV's twice a week. I'm getting really good reimbursement for them too, thank goodness.

    I am unsure whether all the toxins I'm addressing are from mold or whether some also might be from lyme. (Lyme and mold toxins are extremely similar in their effects.)

    Hopefully soon I can get a genetic test that (supposedly) will tell me the extent to which my body has the ability to eliminate lyme toxins on its own. (It also looks at mold toxins. If it tells me I can eliminate those on its own, I'll know there's something wrong with the test!)

    Inadvertently, I hit upon a new way to kill lyme: using an increased dosage of Vitamin C through IV. (Usually I do 25 cc. The increased dosage is 50 cc.) I've yet to find any information about others who have used this as a method to kill lyme, but both of my excellent CFS doctors (Dr. Guyer and Dr. Berndtson) say that the literature is clear that very high-dose Vitamin C indeed is very effective at killing pathogens.

    The reason that I know this is killing lyme (or some other bacteria) is because it's exactly the same die-off symptoms that I got from doxy/minocin. For the time being, I feel much more comfortable using the Vitamin C for this purpose. Perhaps if my system gets stronger, I'll move back to the antibiotics (which made me way too sick the first time I tried them). I kind of hope I can address the problem just with the Vitamin C though.

    Anyway.....tonight I made a list of the improvements in my health that have occurred over the past six months. I thought it was really impressive, and thus am including them here.

    I also am including lists of the detox vs. die-off symptoms that I have gotten. (Again, the detox is from the cholestyramine and/or fish oil. The die-off is from high-dose Vitamin C and/or antibiotics.) This is pretty detailed, but perhaps someone will find it useful.

    (I should note that I also have been addressing other kinds of toxins by using FolaPro and ActiFolate along with B12 to address methylation difficulties. I got a big detox reaction when I first started that, though that was much more similar to a bad hangover than to the symptoms on the list below. Nothing dramatic has happened as a result of those supplements recently, but it's quite possible/likely that they have been contributing to my improvements.)

    Note: * denotes a symptom widely acknowledged as being related to biotoxin poisoning.


    Symptom Disappearance:

    Light Sensitivity*
    Shortness of Breath*
    Word Recall Difficulties*
    Appetite Swings*
    Unusual Sweating*
    Excessive Thirst*
    Frequent Urination*
    Muscle Ache*
    Skin Sensitivity*
    Decreased Visual Contrast Sensitivity*
    Mild Fevers*
    Chemical Sensitivity*
    Malaise *
    Unexplained Weight Gain*
    Decreased Sex Drive*
    Vulvar Irritation*
    Near-Constant “Starting to Get a Cold” Feeling*
    Difficulty Hearing (Separating Words and Background Noise)*
    Alternating Constipation/Diarrhea*
    Red or pale skin *
    Muscle Stiffness*
    Lung Pain*
    Inability to Manipulate Numbers in Head*
    Trigger Point Swelling/Tenderness
    Difficulty Drawing Deep Breath
    Stimuli Oversensitivity
    Very Poor (and Weird) Handwriting
    Inability to Waken Until Mid or Late Morning
    Feel Awful Until Late in Day
    Non-Restorative Sleep
    Agitated Exhaustion

    Note: Have lost 20 pounds over six months without altering diet or doing more than mild sporadic exercise. I now am at a mid-normal weight (U.S. Size 8) for my height.

    Symptoms Gone, But Return When “Feeling Bad” (e.g. after significant mold exposure or when no recent intravenous Vitamin C).

    Even then, they're a lot better than they were seven months ago.

    Morning Stiffness*
    Static Shocks*
    Difficulty FInding Words *
    Decreased Speech Smoothness *
    Trouble Speaking Fast*
    Post-Exertional Exhaustion *
    Trouble Walking/Running Easily*
    Reduced Coordination*
    Low Motivation*
    Dead Creativity*
    Decreased Attention*
    Poor Organization*
    Increased Narcissism*
    Poor Empathy*
    Increased Irritability*
    Lateness Tendency*
    Poor Stress Coping*
    Mood Swings*
    Jerky Movements*
    Motor Tics*
    Low Blood Pressure*
    Sudden Spells of Very Rapid Heartbeat, Faintness
    Feeling of Being in a Coma
    Weakness when Standing (or Sitting)
    Rapid Usual Pulse

    Improved But Continued Symptoms:

    Poor Short-Term Memory*
    Difficulty Reading *
    Difficulty Processing Fast Oral Information *
    Decreased Productivity*
    Reduced Concentration*
    Poor Assimilation of New Knowledge*
    Voice Changes (Speak More Softly)*
    Blurred Vision*
    Inability to Handle Stress (cognitive or emotional)
    Sudden Sleepiness
    Tendency Toward Candida
    Avoid Interpersonal Contact
    Days Blend Into One Another
    Difficulties Switching Thoughts/Activities/Attention
    Feeling of Being “Stuck” in Place (like a spider web...physically and existentially)
    “Functional” Lethargy (worse if push past it)
    Tendency Toward Obsession (part of thought switching difficulties....)
    Intolerance of Medications, Alcohol
    Inability to Multi-Task
    Difficulty Organizing Cognitive Material
    Feelings of Detachment from Everything

    Symptoms Not Improved:

    Sinus Congestion*
    Easy Bruising*
    Sensitivity to Dairy/Wheat*
    TMJ (lyme?)
    Need for Hormone Replacement (T3, Estrogen, Testosterone, Oxytocin)

    Biotoxin Symptoms Rarely/Never Experienced

    Ice pick Pain
    Head Aches
    Red Eyes
    Abdominal Pain
    Joint Pain
    Metallic Taste
    Increased risk taking
    Poor boundary awareness
    Poor insight
    Poor insight into illness
    Unable to process trauma or interpersonal pain (??? I'm not sure if I'm strong or numb at this point. Maybe both.)
    Panic Attacks
    Eccentric personality (??? a matter of opinion)
    Increased alcohol consumption or increased drug use
    Red eyes
    Eye pain
    Saliva with blood streaks
    Tingling nose
    Nasal itching
    Runny nose
    Hair loss
    Diverse and severe rashes
    Burning skin sensation
    Joint pain
    Cartilage damage
    Sharp Stabbing Pains
    Heart Muscle damage
    Heart muscle inflammation
    Chest pain

    Die-Off Symptoms (Antibiotics or High-Dose Vitamin C IV’s):

    Swollen Lymph Nodes
    Extreme Irritability/Rage
    Extreme Depression
    Cognitive Function Disappears
    Intense Sensitivity to Stimuli
    Total Intolerance of Stress
    Intense Fatigue
    Extreme Thirst
    Parched lips
    Feverish Feelings
    Tendency to Curl Up in Ball
    Eye Symptoms (sparkles, “fireworks” explosions, floaters appear or darken)
    Mental Confusion
    Mild Hallucinations (objects moving)
    Muscle Stiffness
    Pushing Past It Makes Feel Much Worse (e.g. going out for even a little while)
    Extremely Low Stamina
    Salty Taste
    Feel Very Physically Sick

    Detox Symptoms (Questram/Cholestyramine and/or Fish Oil):

    Feeling of Being Unable to Move (stung with tranquilizer dart)
    Thoughts Stuck in Place (lack of thoughts)
    Emotions Stuck in Place (lack of feeling)
    Feeling of Being in Coma
    Feelings of Detachment from Everything
    Muscle Stiffness
    Feeling of Brain Swelling
    Decreased Visual Contrast Sensitivity (everything gets dim)
    Reddened Irritated Skin
    Handwriting Deteriorates
    Increased Diarrhea
    Stools, Sweat Have Chemical Smell
    Detox Foot Patches Turn Very Dark (normally beige)
    Chemical/Mold Sensitivity Increases
    Difficulties Speaking/Listening/Reading
    Pushing Past Doesn’t Make Feel Tremendously Worse (e.g. going out for a while)
    Accomplish Nothing Even if Try
    Feel Faint
    Inability to Speak Coherently
    Feel Mentally Dysfunctional

    [This Message was Edited on 06/17/2008]
  2. Forebearance

    Forebearance Member

    Thank you for sharing that with us, Lisa! That is an exhaustive list of symptoms!

    I especially like "eccentric personality". How are we supposed to tell if we have that??

    I hope you keep feeling improvements as you continue to detox yourself.


  3. Slayadragon

    Slayadragon New Member

    Hi Kelly,

    You're absolutely right about the reasoning for why the high-dose Vitamin C kills pathogens.

    When I first went to Dr. B and asked him to do the Vitamin C IV's, he suggested that a higher dose might be especially appropriate since at that level it exercised a "pro-oxidant" effect and thus would kill pathogens.

    I still don't understand this very well. Would you be able to explain it?

    "Pro-oxidant" makes me think of Cheney's comment that the relatively anaerobic environments of CFS sufferers' bodies allow lyme, candida and chlamydia pneumoniae to flourish. (I know candida and cpn are issues for me, and it seems lyme is as well.)

    Is this the same thing? Like, does the vitamin C make my body more aerobic for a time and thus wipe these things out?

    Supposedly viruses get killed off through the high-dose C too though. I'm not sure those fit into Cheney's theory about the anaerobic tendency.

    In any case, insofar as my body's makeup is altered by these IV's, it must be for only a very short period of time. Like less than an hour, I think. After that the Vitamin C gets used up or washed out, and thus goes back down to its normal level.

    Something really intense must be happening during that short period of time, therefore. Are we postulating that a whole mass of lyme (or whatever) is "starved" (or whatever) during this period of time, but that it then takes several more days for my system to get rid of all the dead bodies? That's kind of what it feels like is happening, but it's hard for me to know.

    And yes, you're quite right: cancer patients often get very high-dose Vitamin C IV's (up to 100 cc's). I'm not sure how often though.

    Anyway, please explain more if you have time. Where did you learn about this?


    Best, Lisa

    [This Message was Edited on 06/18/2008]
  4. acer2000

    acer2000 New Member

    I am pretty sure Vitamin C boosts the adrenal response, and probably in doing that your body's ability to respond to infection and or inflammation... Also, can you substaintiate that Vitamin C actually "chelates" mercury? I have heard this.. but I have never seen any study reference that shows this...
  5. Elisa

    Elisa Member

    Hi Lisa,

    This is a great site for info on Vit C...

    I find Vit C really helps too.

    God Bless,