Sunday, April 1, 2012

Better than a view: more Hawaii experiences

What could be better than a view of the ocean?

I love views.  Ocean views, mountain views, panoramic views over hillsides and farms.  I grew up with a mother who willingly paid more for a room with a great view, and who got my father to buy property in West Virginia because it had an amazing 360 degree view of mountains and valleys. So when I found a rental on VRBO with an ocean view from the hillside about Kailua, I took it.  After I’d paid the nonrefundable security deposit, I realized that there was little outdoor living space.  What if the place were moldy?  (the owner had assured me it was definitely not¸ but I’ve learned not to trust owners.) What if it rained? (It did, first rain after a long drought.)  A few other ‘what if’s ran through my head, but we needed a place to sleep and cook meals, and we didn’t want to spend two hundred a night for a hotel.  So with a bit of trepidation and a lot of optimism, off we went.

I immediately loved Kailua-Kona and the energy of the Big Island.  Lots of lava and dry grasses, lots of tropical plants. It was warm and sunny, which was just what my spirit needed to heal.  Our host-owner handed us papaya and oranges from his trees and made us feel welcome and comfortable.  The kitchen was stocked with all kinds of useful utensils; the closet had boogie boards and coolers and beach bags, the place seemed to be mold free and immaculately clean.  Best of all, it had a beautiful view of the ocean.  We watched the sun set while eating dinner on the patio.  My roommate went into the hot tub.  I curled up under a blanket on the sofa, gagged on the laundry-detergent scent of the sheets, got out my sleeping bag and fell into a sweet sleep.

At 2 am I woke with racing heart and terrible cramps in my calf.  I remembered Shoemaker saying that calf cramping can be a sign of elevated C4a, one of the early markers of a reaction to mold.  I got up, set up my sleeping mat outside on the deck, and moved myself to the Great Outdoors.  I didn’t sleep a wink the rest of the night.

The next day I surprised myself by having decent energy, enough to go swimming, walk around some shops in downtown Kailua, meet up with some friends for fresh Kava and dinner.  I slept outside and woke up the next day with a cold and sinus infection.  Ugh!  I was wiped out for 2 days, then congested, cold and tired for the last 2 days.  It didn’t help that the weather turned gray and rainy 2 days in a row.

But in driving up the coast to check out some camping areas, I found places where my head cleared.  I felt particularly good in the south Kohala coastal area.  As soon as we turned around the NW corner of the island, coming into Kaha’au and Hawi, I got congested again.  Taking the highway back through Waimea to Kailua, I felt great on the stretch due E of that dry area and decided I’d look for housing in that area if I ended up staying on the island. I continued to sleep outside and work outside, despite periods of rain, because I felt jittery inside the house.We learned the last day that the owner had a pesticide company come monthly to spray the perimeter and set pesticide pellets in the garden right next to my sleeping area and I wondered how much pesticides could have been triggering me rather than mold..  

I had some trepidation as we left to drive to our new place on the wet side of the island.  I knew it was a beautiful house, and the woman renting it to me is an energy healer I've known through phone and Facebook contact for 5 years.  Surely the place would have good energy, and would be okay because it was right on the beach and fairly new and built over an area of lava flow from 1990 in which nothing grew.  The house turned out to fulfill its promise of being spacious, open, and sparsely but tastefully furnished.  I didn’t smell mold, see any inside mold, or any signs of water damage.  I did noticed lots of mold discoloring the cement walkway and the wooden porch in the back of the house and decided that since it was outside, it probably wouldn’t make a difference. WRONG

For me, outdoor mold does make a difference.   Some of the comments to my post ‘Hawaii on trial’ dealt with whether outdoor mold is toxic or not, and whether moisture alone is enough to cause an existing sinus problem to worsen or not.  One commenter wrote:  “it seems like the possibilities suggested so far are a) that there are toxic molds growing outdoors that are triggering immediate sensitivity reactions upon exposure (as I believe happens as a result of exposure to trichothocene producing Fusarium in farmlands in the Midwest); b) the humidity in the air is causing a sinus infection already present to flare; or c) mold spores in the outdoor air in some places are lodging themselves in the sinuses and causing a new infection.  It would be interesting to know which of these was happening for Janis, in the different places that she is visiting. I wonder how we could figure it out.”

Not expecting to figure it out myself, I went to Dr. Dennis’site, since he’s the one who taught me about fungal sinusitis and inspired me to get a CT-scan.  Here’s what he wrote:

“The real culprit: Mold, that is present in your everyday environment. In 1999, The Mayo Clinic proved that the cause of 93% of all chronic sinusitis is an immune reaction to fungus (mold). When fungi enter your sinuses they cause your immune system to react. Your body generates antibodies to fight the invasion. That battle leaves your sinus lining (the mucosa) pockmarked with microscopic pits that become the breeding ground for bacterial infections. It is only a matter of time before all the symptoms you hate hit you full force. It is also why antibiotics clear the infection only to have it returns weeks later.”
What follows are suggestions for nasal washing four times a day, mold remediation, anti-fungal house treatments, and similar interventions to control the total load of mold..

Dr. Dennis continues:
“It really is that simple. Control the antigen and you control your Chronic Sinusitis. Remember the body is like a bucket. The moldy air you breathe in fills it and the body protocol empties it. High air mold counts keep your bucket full and you sick, because you are constantly breathing in the antigen while only periodically emptying it with your nasal wash. That is why you must do both the body and the environmental protocols to keep the disease under control.”

I certainly agree with parts of this – mold in the air I breathe definitely impacts me.  I have circulating mycotoxins, and probably will continue to have them as long as the fungal foci in my sinuses keep producing toxins. I don't think it could just be moisture, as doing the neti pot helps.

I think Dr. Dennis errs in encouraging people to stay in their houses and try to make them mold free.  The friend who went to see him (and told me about it) was told something else in person:  “Get thee to the desert, to a high elevation, or to the beach—right on the beach, not a block away, and thou wilt be healed.”  Her husband has to stay in a certain metropolitan area that has none of those climates, so with her Dr.’s support, she’s building a house without any woods or forests nearby to keep the mold counts down, and following his protocol in other ways.  Another friend of mine built a house on steel piers and did much better once she moved into it.

Controlling the antigen has not been simple for me (as Dr. Dennis makes it sound).  I couldn’t seem to do enough in the moldy environment.  Too many sick people try to live in their remediated houses, only to fight a useless battle against the mold toxins and bacterial toxins from a water-damaged building (WDB) that are imbedded in parts of the house which were never touched by actively growing mold.  This stuff gets absorbed from moldy air also and some of us react to it.  I chose to leave my house rather than spent $100K or more replacing all the drywall and framing and basement concrete blocks.  I don’t regret it even though it’s been tough.  The gains I made were rapid and rewarding. 

But these get easily reversed when I get a mold hit, not only because sinusitis flares out, but also because of the general immune inflammation that starts up.  This is the process Shoemaker has researched and understood.  It is sad that more doctors, such as Dr. Dennis, don’t realize the significance of Shoemaker’s work for a subset of patients—those of us with ME/CFS, EI, chronic Lyme, and related neuro-endocrine-immune disease.  The immune reaction is a cytokine storm that sets into motion a cascade of reactions which can take from several hours to several days to play themselves out.  Something goes right into the brain (perhaps pieces of fungal DNA, beta-glucans, and/or bacteria and mVOCs) all of which trigger neurological, endocrine, and immune symptoms way more annoying and disabling than a sinus headache or stuffy nose.

I got to reexperience this pretty quickly in the Kaimu Beach house. 

After bringing in our suitcases, we went out to a wonderful meeting that evening with our host and made more new friends at the gathering, getting healing energy and giving it, feeling incredibly connected, peaceful, and hopeful.  When I had my hands on my partner and felt the energy flowing, I knew I had to get back to doing energy healing.  It was a fabulous feeling of having come home to my path.  And frankly, it surprised me as I’d started to write art history articles for conference publications (even though I couldn’t accept the offers to travel and speak at those conferences, and felt pretty sure I’d be going back to that work as my brain cleared.)

Back at our new house, I was too energized to sleep.  I sat out on the lanai working late.  When I finally crawled into my bed, I tossed and turned as my heart raced and my head swirled.  Finally, at some wee morning hour, I got out my camping equipment and set up inside on the living room floor as the outside air was terribly damp.  The floor boards felt coated with water.  Inside I ended up closing all the windows to keep out the damp, but even with a double dose of Xanax,  I got only 1 ½ hours of sleep before really bad calf cramps and a heart knocking on my chest wall like a caged prisoner awakened me.  I could barely stand and walk due to the sudden return of orthostatic intolerance.  And my sinuses hurt, my nose dripped, I coughed and all those messy yucky things.  I spent the day feeling like a zombie with racing heart and poisoned brain as we packed, drove back over the mountain, and found another place to rent in the S. Kohala area. 

On the way over, we tested the theory I learned from Lisa and Erik that going up to high elevations can help to clear your car and your stuff of mold toxins.  The road up to the visitor’s center on Mauna Kea takes one to 9000 feet.  It was cool and sunny, and we hung out for about an hour feeling better by the minute.  I haven’t had any problems in the car since, which admittedly doesn’t prove anything.  I did feel my racing heart calm down as I rested up there. 

I slept like a baby the first night in our new place (9 hours straight).  I could tell I was in a really good place as the 2nd day unfolded.  Despite my near total exhaustion, I could feel myself relaxing deeply, and my mood brightening.  I gave up the idea of taking a flight back to California that evening, and even began to consider staying here long term.  I did yoga nidra, qigong, and stuck acupnncture needles in a few points.  By evening, I felt something shift inside.  It was a nice feeling of settling in, the quiet after a raging storm.  This is better than a view, I found myself thinking as I looked out over the golf course knowing that around the bend, others can see Mauna Kea or the ocean from their terraces.

When my brain was working again, I remembered that my sleeping stuff needed to be decontaminated.  I washed the sleeping bag and pillow case, but that wasn’t enough to stop the raging sinus headaches I woke with every morning.  Apparently, all that stuff, which was in the trunk of the car rolled up in stuff sacks, was not fully accessible to the elevation effect in the course of a mere hour.  Next time I go up Mauna Kea I’ll take everything out and plan on staying for a longer time period. 

In the meantime, I slept in a bed last night.  Yes!  I SLEPT in a real bed.  And what a pleasure it was…. zzzzzzzzzz.  Looking forward to repeating the experience….zzzzz.

Today, my 4th in the new place, I feel my strength returning as my sinuses clear up and my body recovers from the cytokine storm.    For the first time in a week, I felt like taking a walk on the beach, did a little water aerobics in the ocean too.  An hour later, I had to walk a lot because I forgot important things in my car, and I got worn out.  It wasn’t nearly as much walking as I’d done at my best in the desert, but was more than I’d done since I arrived in Hawaii

Added the next day
It is my 5th night here, and my 2nd in a bed, and I am not sleeping much at all.  I don’t know if it was because I went to a new place to take a sauna, got overtired having to walk too far, or because I took a dose of ADH (desmopressin) before bedtime.  I’m leaning towards the ADH as I didn’t feel the same symptoms I usually get from a mold hit.

Desmopressin is used by Shoemaker as step 8 in his 13 steptreatment plan.   I was doing fine on it in the past, when I’d managed to go without a cytokine storm for a long time. I clearly reintroduced it too quickly. Shoemaker repeatedly says in Surviving Mold that, after a new exposure, one has to go back to the earlier steps and introduce them systematically all over again.  Oops!

It’s also possible that the Hilton spa has a hidden mold problem.  I know they have to work to control mold in the steam room because I asked them about it and learned that they clean it every 2 days.  Maybe the amount that builds up every two days is enough to ruin the entire space for hypersensitive persons like me.  I’ll test these two hypothesis over the next week by a process of elimination, stabilization, and reintroduction of one variable at a time.

In the meantime, I realize I have to be more careful.  I don’t like living a limited life, but for the time being, staying at my new home, going to the store, the beach, and some outdoor parks is going to be my life.  I have the enthusiasm and desire to do more, but my reality is still couched in hyper-reactivity.

Are there medical interventions that could make hypersensitivity lessen?  Various doctors have their theories and clinical experience.  Rea focuses on detox through sauna and oxygen, nutritional support, and provocation neutralization testing and shots.  He has patients block reactions in progress with serotonin and/or histamine shots.  Hope focuses on raising CNS glutathione through nebulizing and liposomal supplementation as well as CSM to lower mycotoxin load and other binders (charcoal, bentonite, zeolite) to pull out different groups of toxins.  Vinitsky focuses on supporting methylation with his 5:2 ratio of folic acid to hydroxyl B12. 

My plan is to get into Dr. Hope’s protocol living a quiet, isolated life until I get stable, then introduce sauna (whether the Hilton or through purchasing my own) and finally moving forward through the steps of Shoemaker’s program and increased methylation support, but with 5-MTHF rather than folic acid.  I tend to introduce too many variable too quickly in my enthusiasm and impatience, and need to slow things down.  This is a healing journey, not a triathalon.  I need to enjoy the process without rushing towards the goal or I end up as the hare losing the race with the plodding turtle.


Fortunately, I feel good enough about this place to have a surprising inner certainty that it’s going to work out for quite a while, and that brings me a feeling of tranquility.  Ironically, the desperation I had from the Kaimu Beach place brought me here, while my roommate, whose brain was functioning, found the place online.  In a calmer state I would have eliminated it because it sits on a golf course, near a road with traffic, and is carpeted throughout.  According to the advice of Shoemaker, Rea, Hope, and Nagy (a doctor I haven’t seen but who healed with the help of Rea from CIRS with extreme fatigue and hypersensitivity) carpets hold mold toxins, golf courses are laden with pesticides that interfere with neuro receptors, traffic adds an unhealthy level of solvents into the air.  Yet even though the place is not ideal, I’m experiencing daily improvements, which tells me that it’s good enough for now.

No environment is perfect.  Our world is toxic, with air and water currents carrying chemicals and metals far from the places they were dumped.  I do the best I can, and listen to the wisdom of my body so that, if I’m sleeping, relaxed, and have the desire to be active again, good things are happening inside.

Thank you Kaimu Beach house. Double thanks to your wonderful, compassionate and kind host, a facebook friend I’m glad to have met in person after many years of phone contact. May your desire to spread healing energy help many others in whatever manner spirit brings to each of our destinies.

9 comments:

  1. Dr Dennis treats people as individuals. He did not at all encourage me to stay in my home nor to keep my belongings. The opposite. All people are different and I am sure since he has seen thousands, he is aware of that far beyond most MDs who treat mold illness.

    I want to respond to your last post and to Lisa's comment that you refer to in the above post:

    I would think yes to all of the above as potential issues to varying degrees depending on the person. Fusarium can also be an infectious mold I believe. Other molds (asper pen) can be toxic as well.. how these act in human tissue as they thrive and grow? How might they interact with the environment as new spores and possibly chemicals or irritants are breathed in??

    There is the possibility that some of us have upregulated immune reactions to fungal spores which can lead to localized or systemic inflammation, esp potentially exacerbated when sinuses are harboring smouldering (potentially toxic) fungal infections.

    I had a symptom flare post surgery, an appointment with scope revealed polyps has started to grow back soon after surgery. These were addressed and symptoms went away. I don't think this was not an infection yet.. it was an inflammatory reaction that included symptoms such as brain fog, memory issues, and some minor psych symptoms.

    I think there is research about the mycotoxin bearing particulates passing straight into the brain as well.

    The role of such in systemic inflammation, I don't know. Dr Dennis has a paper on his theories which include a super antigen like effect. Dr Kern also has theories on this.

    PHYSICIAN PANEL DISCUSSION

    The third presentation was a panel of five physicians discussing various aspects on illness acquired following exposure to WDB. Unfortunately, none of the other panelists had a data base from their personal experience on successful therapies, so the 90-minute session ended up being a discussion of parameters that our group has published. The good news was that one of the panelists, Dr. Eugene Kern, now at SUNY-Buffalo (with Drs. Ponikau and Sherris), and previously chair of ENT at Mayo Clinic (Rochester, Minnesota), wants to collaborate on research regarding the inflammatory basis of the fungal cause of chronic rhinosinusitis and systemic inflammatory responses. This research shows great promise http://www.survivingmold.com/about/enewsletter-archives

    My question is potentially how systemic?

    Chronic Sinusitis: Defective T-Cells Responding to Superantigens,
    Treated by Reduction of Fungi in the Nose and Airttp://www.sinusitiswellness.com/articles/abstract/Dennis-ChronicSinusitisarticle.pdf

    Also, I believe that certain staphs in nasal cavity, sinuses can also act like super antigens. Staph can grow with fungus in diseased sinus and may grow without the fungus, don't know for sure.

    A friend of mine recently noted that she felt better while on Shoemaker's oral rifampin and BEG spray for marcons-mrsa. I thought back.. I did not have this burning systemic pain while I was on a protocol of two abx nasal sprays that the mrsa showed no resistance to. There are other potential factos at play as usual, rifampin I think addresses lyme and most likely other potential infections and when I stopped my sprays, the outdoor mold counts also rose and my parents began the process of moving back into their mold remediated house (highly contaminated). So an observation to flesh out.

    Sinus infections (fungal or bacterial) also makes me wonder about brain infection.

    I do know Dr Dennis et al have written a paper on the effects of infection on pituitary and GH.

    http://www.sinusitiswellness.com/articles/dennis-robertson_syndrome.html

    I am thinking that if you have an infection and potentially a mycotoxin factory in your sinuses, then you are "the location" and I am not sure how much healing can take place without addressing that. I don't know.

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    1. Thanks for sharing this additional information. There's nothing like hearing directly from one who learned from the source.

      I probably should have clarified, that remediating my house in a town where all my friends houses are moldy, the library and coffee shop are moldy, and the house is surrounded by dense woods on 2 sides, would have made a reduction that didn't make enough difference to shift my health.

      Some houses can be remediated, I've heard of people who've gotten well doing that first and then following a good protocol.

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  2. Jsnis, Controlling the antigen does not mean burning candles or diffusing citrus seed in a mold contaminated house. Stingent remediation is advised for those who can tolerate a remediation. Some people as we know cannot and this is well noted. The antigen control which also includes washing clothes with a solution, cleaning out AC in car and more is to control outdoor mold spore counts that get into places we habitat and our belongings that people with upregulated t-cell reactions to living mold spores might react to.

    I also was not told that I would heal if I relocated. I was told these places have lower outdoor mold counts and my body may not be able to tolerate environments with high outdoor mold counts, let alone of course mold contaminated housing or buildings. If I can't tolerate, then chances of health improving are slimmer.

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  3. Thanks for the clarification. I didn't think I said anything about burning candles.... I don't think anyone advises that as a solution. The program, as far as I can tell, is extremely rigorous and diligence is required to follow it. If I really loved Ohio, I might have tried it. But I was ready to move to a climate with more sunshine :)

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  4. I'm not sure how much the environmental protocol would have helped in Ohio in your location, same house as well. My house was in the middle of 100 acres of woods I think in a bowl even. Our new house is close to a wooded preserve (common in our area) but not in it or in a bowl where air can't flow well. We did purchase with the idea in mind that this house had to be rentable in case we need to relocate. I can tell from how my body is reacting to the higher spring mold counts, this looks like it will be an issue. I am still tryig to figure out if the burning systemic pain is part of a t-cell response to fungus. When my sinuses were hurting like made yesterday, my entire body as as well. So much to figure out.

    I would love to be in Hawaii! I hope you find a house you do not react to and good clean breezes. It just makes sense that a less toxic environment would help the body downregulate and detox more calmly. I did get an extremely positive mycotoxin test from Real Time Lab once I got out of my house, and I wish detox was not so hard. Everytime I try, I crash. I know being continually exposed to mold and other toxins and possibly too much living mold spores in the outdoor environment is just compounding things.

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  5. I dont see this posted (intended to be first part of my response). If I post twice, sorry!

    That's part of the environmental protocol to remove antigens from the air, so it is advised but not to remediate a house or for water damaged building mold contaminants, rather to control environmental contaminants that enter the house, on clothing etc from being outdoors.

    There is the environmental protocol and the sinus care protocol as well. Proper remediation for those that can tolerate that and relocation for those that can't.

    http://www.microbalancehealthproducts.com/cgi-bin/commerce.cgi?preadd=action&key=80000036-1282761154 (this link leads to the candles)

    http://www.sinusitiswellness.com/protocol-ridding-body-of-fungus.html

    Some science:

    http://www.sinusitiswellness.com/articles/abstract/Dennis-ChronicSinusitisarticle.pdf

    http://scienceblog.com/1603/mayo-clinic-receives-patent-for-new-treatment-of-chronic-sinus-infection/

    http://www.niaid.nih.gov/news/newsreleases/2004/Pages/chronicsinusitis.aspx

    Here's a comprehensive summary of mycotoxin damage, including particulates:

    http://www.sinusitiswellness.com/articles/molds_chronic_illness.html


    I am currently in a place that has high outdoor mold counts and buildings and homes that have mold issues. It is not easy at all. We know that Shoemaker has documented the impact of re-exposure to people with biotoxin illness. Cytokine markers go up yet again and I'm not sure how one can heal in those kinds of environments. You would think this information would help people understand how some of us are hyper reactive to mold toxins and may not be able to tolerate a properly remediated house (which is rare).

    I think there is literature on particulates entering the brain, esp through damaged sinuses? I know there are some papers out there on particulates. and they may be small enough that they need no tissue damage to enter the brain. I wonder partiulate counts in remediated homes.. dead mold spores- fragments, particulates of very small size still carrying toxins. I think the ERMI is measuring fragments and this is what was very high in my post remediated house.

    If you add in a potential for upregulated T-cell response to live fungus, then that obviously compounds things. I'm still not sure if that inflammation would be isolated to sinuses or be systemic.

    I do know I am flaring this spring but differently post surgery. Before surgery, it was more of a brain fog, memory loss issue, some psych symptoms as well, but nothing like when inhaling the dust in my post remediation mold contaminated house. Before surgery and in and then out of the house (leaving all belongings) it felt like my brain was inflaming up from my sinuses. Now it feels like a sinus infection and I think like it did right after surgery when I had inflammation from the surgery itself. But, when I lay down to sleep, I think mucous stagnates and at times I do have some minor pre surgery symptoms. I don't know if this is inflammation causing these symptoms or toxins from certain toxin bearing spores that are lodged.

    So I started my post surgery protocol adding back in the Vick's facial steamer and then rinsing with the nasopure bottle but with more of the salt salt-baking soda mix. Then I am nebulizing with voriconizole. Nebulizing is suppose to get in deeper into the sinuses, esp after surgery which opens up the cavities. I probably should follow the environmental protocol better than I do since the mold spores are up outside to keep mold spores down inside. I have a Grossan irrigator I need to get out and try.

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  6. This is interesting, Janis, about possible systemic inflammation from a sinus infection:

    http://www.sinusitiswellness.com/articles/abstract/Dennis-ChronicSinusitisarticle.pdf

    Waxman et al.5 proposed a Gell-Coombs Type III hypersensitivity
    reaction6 in Aspergillus sinusitis and
    chronic bronchopulmonary disease. In AFS, the sinus
    mucosa contains small lymphocytes, plasma cells, and
    eosinophils—a condition similar to that seen in asthmatic
    bronchial mucosa.7
    Systemic immune-complex–mediated disease (Type III
    hypersensitivity reaction) affects tissues of the kidneys,
    joints, skin, heart, and serosal surfaces. The reason for
    this specific organ/tissue predilection is unknown. More
    work is needed to determine if a Type III hypersensitivity
    reaction to fungus is responsible for the arthritis and
    other systemic fungal symptoms seen clinically.
    The only real difference between Type II and Type III
    reactions, then, is in the location of the antigen. Type II
    reactions are against antigens located on cell surfaces or
    on extracellular matrix components, whereas Type III reactions
    occur against soluble or circulating antigens.
    Systemic lupus erythematosis and most types of
    glomerulonephritis are the result of Type III immune injury.
    8 Therefore, in all types of allergic hypersensitivity
    reactions, when the antigen (fungus) is removed the reaction
    stops. This fact forms the basis for our CRS treatment
    goal: to remove fungal antigen from both the nose
    and the environmental air, in order to stop the fungal immune
    reaction and allow the sinus mucosa to recover.

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    1. I just read the last sentence as 'our CFS treatment' and thought "is Dr. Dennis now treating CFS as a fungal disease? WOW" Then i saw CRS. Oh well.....

      Thanks for pointing out this important link. It makes me realize that the pieces are out there. Now we need a great synthetic medical mind to put together the research information from 100 different fields with the clinical information and voila' -- puzzle solved. Help offers.
      Janis

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Please add your comments here. If you have a question specific to your own condition, please e-mail me directly at drjanisbell@gmail.com I cannot give medical advice. If you want to suggest a product or therapy you think I should try, please let me know if you have used it, what you used it for, and how it helped you.