Telling the Truth: Who Does?

I got lyme ten years ago this summer, when visiting a woman I thought I was close to from frequent online interactions and phone conversations. I brought up lyme to her ahead of time, as she was in Connecticut, and she said it was safe. Au contraire, she lived 10 miles from Old Lyme, CT; deer ate her flowers; and her dog had had lyme. She didn't tell me any of this, and actually brought me into her garden to cut flowers, mentioning the deer belatedly.

My life completely changed after that. Twelve days later I had a bullseye rash, fever, positive western blot. When I told her how sick I was from lyme, she told me I could have gotten it anywhere, even Central Park, where she claimed there were deer (which she knew was false as she'd gone to NYU at one point), and she basically refused to even admit I got it in her garden.

Oddly enough, though, I've found the same dishonesty prevails online anywhere. I find myself frustrated listening to people's stories. I can't discern what is the truth. The truth is always subjective and people seem to put forth what they want you to hear. This is troublesome when I want to figure out if a treatment or approach might help me.

In 2007, encouraged by someone who was doing salt/c and said he was finally getting well and would soon go back to work, I did four days of salt/c and really irreparably harmed myself. I don't know why it was so toxic to me, my kidneys etc, but though I recovered slowly over the course of a year from the immediate effects, I never lost the severe MCS that started after those four days.

I was shocked to learn, after a month of emails back and forth questioning this fellow, that he'd been applying for disability while he told me he was getting well and soon would go back to work. He also had severe heart and kidney pains regularly during his experiment with salt/c, and at one point thought he wouldn't survive through the night. I believe he convinced himself those were herxheimers, but I still don't understand how he could convince me or himself he was getting well at the same time he was applying for disability (which he got after his hearing).

I am very pleased to read my former hyperbaric doctor's blog and her daughter's entries on their success with ARVs. I never really knew her daughter, might have seen her in passing a few times. However, I was fairly close to my former hyperbaric doc. I never knew during the occasional hours-long conversations I would have with my former doc over the last five years, that she was so sick she couldn't get up for more than fifteen minutes at a time. I definitely knew she was sick, and housebound, but because I had no more information than that, it didn't ever occur to me she was also bed or couchbound. I can't infer without information.

Now I'm not really sure how she's doing. I have a better idea from Ali's posting that she can take short walks and do some stretching exercise. That she can go to some community college classes and cook dinner. I still don't know what a short walk is. Is it on an even grade? Is a short walk ten minutes or thirty minutes? Without precise information as to how sick a person formerly really was and how they are now, I have no clue. If she had just written, "Now I can even exercise!" I would have assumed she was doing stairmaster for half an hour, which is what I would call exercise. Can I compare the half hour walks we had been doing on steep grades in Texas Hill Country, to short walks? I DON'T KNOW.

As for scales, a karnofksy scale seems utterly meaningless to me. I have no clue what it means in terms of lived, daily life.

I just really don't know what's happening to most people. It's clear my former hyperbaric doc and her daughter have a retroviral infection they are treating and it seems to be key to improving them. On the other hand, they did two years, yes two years, of IV antibiotic treatment, as well as antimalarials for babesia. I don't know all the details of what they were on, but isn't it possible that they treated all coinfections and copathogens completely, and that's one reason they're doing well on ARV's? But if I didn't know what they'd done, I wouldn't even consider that possibility.

Slayadragon has posted that she is basically living a normal life. Yet on her board a few days ago she posted that washing her hands and drinking a bit of water in a botanic garden in an upscale suburb affected her so badly she had to lay down and sleep on a park bench. She also posted she is likely to go tent camping again this winter, though a stay in civilization was nice. The stay in civilization is, from what I found out by asking at one point, using an office. Not a home.

Is that actually a normal life?

Information is too incomplete on the internet. I get too tired to ask endless questions to really try and sort out the truth, so I can figure out what approaches might actually help me.

In addition, people are so ashamed by loss of their place in the world--loss of their important work, jobs, nice lifestyle--that it seems to me that sometimes they have a need to hide the worst and highlight the best. In addition, if their approach has improved them, they sometimes almost force it down my throat, as if it were the only game in town. And I still don't really know how MUCH they've improved or what their life is really like.

I was really sick in NY by my last year there. I was depressed, I had toxic mold in my apartment, and there was so much noise with schoolkids screaming under my window. It had just gotten to be too much. When I moved down to Atlanta and had dinner with my holistic doc there, he said, "I heard you were really sick but you seem like you're doing really well." I said, "I swing wildly." He said, "I can imagine." Or something like that. He got it. And that's the truth. If I get a toxic mold or toxic chemical exposure, I feel like shit. I can get really sick. My liver rebels. If I go too long without glutathione, I feel like shit. My system is obviously so overwhelmed that it has extreme reactions to inputs that other people, normal healthy people, handle without problem. That includes my partner, who doesn't react to any of the things I do. Places that seem like hell to me, are completely neutral to him.

Maybe I am both healthier than I thought and sicker than I want to be or should be. MCS seems to be my main problem at this point. I feel the most affinity with EI posters on Planet Thrive and such places. I hate tent camping and it's stressful and pretty ridiculous except I really like that there are no triggers in my tent!!!! Someone on one of those MCS boards posted that they felt so good sleeping in a tent in their backyard. I get it. I really need to build a healthy home because I'll never get a lot better if I'm constantly triggered by molds and chemicals, pesticides, formaldehyde, benzene, toxins toxins toxins.

One person who seems pretty clear to me in his reports is Joey. I can usually get a good sense of how he's doing. I do really appreciate that, and the fact he's tried many things has helped me not to have to experiment uselessly with those things.

But I think we must really take all these internet claims with caution. On blogs, on posts, on emails. Who really tells the truth? Everybody wants to be well. Everybody wants to be important and to matter. I don't even really know when someone says they're bedridden, are they just tired but basically okay, or are they suffering horribly?

I don't make many posts on this board anymore, and it's been a long long while since I started a thread, but this matter has been really bothering me. I just have to take everybody's reports with a raised eyebrow and skepticism. Or, even if the reports are a true attempt to be honest, the report is often unintentionally too vague for me to really figure out what they mean. Scales are the worst. I've never seen a scale that accurately reflects my situation.

Thanks for letting me vent.

 

Many excellent points.

It IS very difficult and frustrating to determine who's telling the entire truth, and even if they are, if what helped them will help someone else who may have completely different issues/exposures. I keep saying over and over again that what works or worked for someone, may not or perhaps probably won't work for someone else because of that very reason. Just like you, we all have different exposures, triggers, genetics...

 

I understand your frustration, but without those posts I'd be even farther behind in my understanding of what works and what doesn't. The people I really appreciate are the ones like Coxy who was generous in describing her experiences with the Lightening Process, her excitement, her successes and her doubts as she worked through the program. She received a lot of criticism, but I am grateful she continued to post. At this time she believes it may have helped her.
I learned both good things and bad from reading of her experiences. Lightening Process won't be a treatment I take, but I thank her and others like her for sharing their journeys, because it helps me decide on the best direction I can take for myself.

 

I've always been pretty honest with my posts here. I try to pay attention to what I perceive helps/hurts me, and to convey that as truthfully as I can.

I agree with you, Dan. AND... there is also the point about something working really well for a while, and then it completely stops working. I have had that happen SO MANY TIMES, that I can't count 'em.

I relate to the comment about SWINGING WILDLY. I have a lot of mediocre minimal functioning days, some real bad days, and I can also have days where I feel almost "normal," but I have no idea (in spite of keeping logs of food, and supplements, and activity) why those days happen. If I did, I would be well, or at least on the way there.

My MCS is definitely worse than my CFS too, though in winter I am plagued with chronic infections, and haven't figured how to manage those yet... So those are my two big obstacles. The healthy home I once had has now sprouted mold in one of the rooms, which has resulted in my camping out in my living room for the past 9 months. I've been hesitant to go into all this on slayadragon's thread, because I think she can be a bit extreme about the mold issue... as in burn all your belongings and go live in a metal box in the Las Vegas desert... well almost that.

It's a constant figuring out process, and there are some people that you can definitely trust more than others to be honest with you.

 

That's true, DB, you've always been honest. I wasn't even thinking about you when I wrote this. I remember about your iodine issue, and also the B12. So actually your posts had really helped me. I haven't viewed your video nor read many of your posts lately as I only drop in here for stem cells and the XMRV info lately.

In fact though, I have thought of you and may want to talk to you at some point. About building the healthy home. I recall your subcontractors being jerks and you fired them all and they finally came round.

We stayed for five days at a healthy home outside Austin. This area is way too allergenic as it turns out, even I've got allergies here now. It is the Edwards plateau and is known for its allergens, particularly live oak and cedar, apparently the cedar which is apparently juniper pollinates for 3-4 months in the winter, so thickly it looks like orange smoke. And whoever I ask has a story to tell and basically its: I woke up, couldn't open my eyes they were swollen shut...I take zirtec every day...etc...so as much as we love this area I don't think we'll stay here. It's also a little too humid on summer nights.

BUT anyway, we stayed in this healthy home except for the cedar, the overgrown lawn, and the dog dander still permeating the house. Well I'd walk in and my body would go, Whee, no mold, no toxins. It was sort of amazing. So I've got to build my own home.

And I took notes on his home, and I can get input from Diane Ensign in Arizona who has built several very nontoxic homes, but I might want to talk to you about it all, too. I don't wanna do it!!!!! LOL. Honestly though it's the only solution.

And I don't know where to live yet. I really don't. Every area of the country has plusses and minuses. Atlanta as a city is really polluted, but an hour south in the 40,000 acre greenbelt was good air. Its subtropical though and insanely lush and everybody has mold. You can build to avoid mold but you'd have to be very careful and use a whole house dehumidifier and NO BASEMENT. And even so you will have to be vigilant with that amount of humidity. But the plusses of Atlanta are that its such a lush nurturing area of the country and that my friends and doc there are so fantastic. Can't find that elsewhere in terms of a doc.

Texas--well, we stayed in a town/city called Abilene that was great for air quality but 4 hours from a holistic doc, it's been smart metered already, AND a coal plant is coming.

Here in hill country--the Tuscany of Texas--the air is pretty decent, but the allergies started up in September and they're bad.

We are going to look at San Angelo.

Probably the best place which is why its so expensive, is coastal California, especially southern. A meditarranean climate, not too humid, cleansing ocean, no bad industry (outside the big city pollution of course), no bad farming, etc etc. And way too pricey.

As to your home: is it toxic or not? Toxic mold bothers my liver and changes my mood. Regular mold makes me sick from allergies and that does suppress my immunity, but it's tangibly different. You can probably have that room remediated.

 

Thanks for posting this. It is hard to sort out because some people actually do misrepresent themselves. I found out a couple of years after the fact that someone who was a strong proponent of a protocol on a board that was devoted exclusively to that protocol had never been helped at all by it! But there she was handing out advice and letting people know when they were doing it wrong, as though if they just executed in correctly like she did they would undoubtedly get better. This behavior completely baffles me.

People want to be "the authority." I am just hoping your former hyperbaric doctor isn't falling into that category, but I have my reservations on that score.

The problem is what works for one often works only for them and a few others and we have to be the guinea pigs until we find out what works for us! It's a highly unscientific approach and extremely frustrating.

 

DB-

What caused the mold to suddenly grow in that room? Our mold was all in coming up from our slab floor through cracks. This mold remediation is so tricky I hope we've taken care of it. I will not go to extremes like Slaydragon, but am interested in the causes in your home.

 

Your last insight is very pertinent, I think.

I think it is so hard on people to lose their center of gravity in terms of ego and self-esteem. Their place in the world. Before getting sick, they rested on the assumption that they were competent, perhaps superbly competent, special, great at what they did, etc. A huge amount of self-definition, self esteem, came from that. All lost when they get so sick they stop working entirely.

And you can't get to know someone well enough on the internet or phone, no matter how many emails or conversations, it's a limited form of intimacy quite different from sharing a real lived life with them--actually doing things together, in person, as genuine friends over time. So you don't know what's motivating them. But you can guess sometimes that wanting reparation for all the lost time and suffering, wanting to be made whole, wanting to leapfrog into a new and far greater role of importance in saying, I've healed myself and my way will heal you, too--is a big motivator.

But really, it's sort of useless for me to speculate. All I know is that I often see contradictory information posted by the same person, and that when I think I know somebody and how ill or well they are, I really have no clue because such important information is left out. And that unless somebody is very specific (Dreambirdie, for example, posted in exact terms about her heart issues and sleeplessness with iodine, it was dramatic and I can still recall it), then you are just going to project onto them what you yourself would mean if you said the same thing. It probably isn't at all the same thing.

 

BIG WARNING: Building a house is HELLISH, and building an eco-safe house is HELLISH multiplied exponentially. The guys who work in the trades are mostly tough, strong and insensitive, (and for the most part not real brilliant, if you know what I mean)... in other words, the complete opposite of how we are. :Retro wink: Right now, I am revisiting that-kind-of-guy land, as I interview contractors to take on the HUGE job of ripping out windows and walls (to remediate the mold), and then putting them all back together, the way they are supposed to be. It's not fun. And I am not looking forward to the reconstruction process, though I know I have no choice but to get it done.

My eco safe house is in Santa Cruz, which is a little less moist than SF and Monterey, but not as dry as SB and LA... which have a nicer drier climate, but ALSO much more polluted air. And also... just because you live in the dry lands doesn't mean you will not get mold. My favorite TCM practitioner got a huge mold problem in his house in LA, due to faulty construction (no weep screed at the foundation) and had to pay $80,000 in mold remediation costs. He has several patients in the area who have had to do mold remediation as well. So it's not only the area you build in that determines how much mold you will be dealing with, but also the expertise of the contractors, and their mold awareness level.

I had very low levels of toxic mold--1 spore, and higher levels of other mold, the names of which I can't recall right now. But because I am so sensitive to mold, it's all bad for me.

 

The cause of mold in my home is severe condensation in winter months, being caused by metal (aluminum) window frames. And unfortunately I have 28 windows on my side of the house! But one room (the north facing one) is especially moldy.

I am going to swap out the main culprits for a vinyl framed windows, and remove the others completely and wall them off. I will have to do this to other rooms in time as well, but this is where I will start. Arrrrrggggggghhhhhhhh!

 

Dreambirdie, I know you are right. But I also know I have to do it. One thing I am considering is hauling our a$$es all the way back to Georgia where there is a safe "trailer house" (built for mcs person--actually like a little 30 by 8 moveable house can be put on wheels and has a trailer hitch). If I try it for a few months and its 70-80% okay, I can buy it, haul it to where I want to live, and live in it while building. And by the way, the financials of this are boggling, and I'm hoping I can pull it off...I can build SMALL.

But the safe mcs/mold free house we stayed in was so excellent in that way (but the allergen issue and the owner's refusal to negotiate stuff, made it not worth purchasing) that I see that true healing can only come about in such a house. Diane Ensign says the same--those who get a lot better build or buy a safe house and stay put.

I'm also aware I need to be on site, and hire a special contractor, and probably say I'm going to write it up somewhere as an article in a national mag, in order to keep them honest. I think a slab, proper vapor barriers, properly insulating the edges of the house, making sure you're up (not in a flood plain or getting water runoff from neighbors), a proper metal roof, proper gutters, all is so important. That's why I say, I'd rather not do it, what a hassle it will be.

I'm so sorry your home got mold. But glad it's not toxic. I too can't handle any mold but the mood and immune hit from stachy is in a class of its own (I still get immediately suicidal feelings around stachy toxins); and any toxic mold is bad for my liver; and all molds cause me respiratory and allergic issues.

 

I know soil holds tremendous amounts of moisture--and slabs can be excellent (as compared to basements which can be mold sources from hell) but only with proper vapor barriers. Apparently many homes don't have those. Sorry to hear about your problems!!

 

Really great and perceptive thread highlighting a key problem, especially with online communication.

I don't think many people are actually being consciously dishonest or misleading, but as has been pointed out, ego and tunnel vision can be a problem. Everybody tends to want to be a guru, and everybody tends to think that the things they've found out are the anwer to everything. These temptations are very hard for anyone to resist.

Another problem is that people describe things in very different ways. Never mind the subtle language and cultural differences between US and UK; even within the same cultural context people describe the same experiences differently. One person's "severe" is another person's "moderate". One person's "recovery" is another person's "alleviation". We always assume we're speaking the same language, but ultimately we never really are.

I do think slayadragon, like everybody I've come across who has "recovered", would always also make it clear that this is not really a "recovery" but a way to live more comfortably and more productively by rearranging the world around us to suit our new weaknesses. This is very much my own situation.

Time and again I find myself thinking "what am I even here for, talking about all this? There's nothing much really wrong with me any more." Then I put on an old pair of trousers and go out for the evening, my legs burn and itch all night, my muscles start burning and aching, my whole mental state starts to go haywire, I start spirallling downwards, exhaustion overcomes me, headaches begin, everything begins again, and once again I'm trashed and back into detox mode for the next month. And once again I'm reminded that all this is not recovery. It's just accommodation - making the best of it. I still can't leave my flat and live a normal life. But here in my cocoon things sometimes seem so safe that I forget this is a prison I still can't escape.

I think that most people, and maybe all people, don't lie consciously; they just emphasise what seems important to them at the time and they push the aspects that weaken the case they're making to the back of their mind. Communication between people is always imperfect, whether online or offline.

The only solution I have to it all is to try to balance extreme openness to what people are really trying to say (rather than what's on the surface), with extreme scepticism as to whether I really am understanding that person's reality fully.

And the final, crucial factors in the end are identity and trust. If you find somebody who speaks the same language as you, who you understand and identify with, who you build a relationship with that really works, then you can start to make some progress together. That applies just as much offline when you choose a health practitioner as it does when you're online.

 

I wonder if it could be a matter of how for some of us, the illness itself has led to less-than-transparent communication. I was an open-book and very verbal person all of my life before falling ill in 1985. The misperceptions and judgments surrounding the illness led me, over time, to become much more self-protective and changed my pattern of communication quite a bit. I'm no longer an open book, or even very spontaneous. I'm a bit more careful about what I say and to whom, out of self-protection and energy conservation. For example, I've never told any of my neighbors that I have this illness. They see that I'm home all the time, and that my van rarely moves, and that my husband does the driving and shopping, and they see me in the yard resting on occasion. They know I don't work. And they may think whatever they wish about my situation, but I don't tell them anything because it's too much to try and explain. I don't need people's ill-informed judgments.

This kind of self-censoring must affect all of my communication, not just that with neighbors or others. Not consciously. But I've become more insulated and inward, and I wonder if others might have experienced the same thing -- communication altered. I must leave out important things a lot and not even realize it.

I do agree that ego and wanting to have the answers probably motivates some people into being less than open about their experiences with modalities. But just wondering if there's also a dimension of unwittingly not communicating openly or well, due to our closed-in sensibilities. As we all well know, some PWCs have been so terribly devastated by loss of family support and loss of social ties and understanding that they've become totally insular. Not that it justifies being dishonest, ever. Just adding my two cents about a possible other element at work in problematic communication.

Mark's point about how different words mean such different things to all of us seems spot on. And I think that I've simply gotten too tired trying to explain or quantify what my levels of functioning might mean to someone else. I don't even talk about how my days are to most people close to me. It's repetitive and monotonous, so I'd rather not talk about it most of the time. The only time I do is when having such a bad flare that I can barely stand up, the kind of flare where even talking is impossible, or reading or anything. Then I let my husband know what's going on. But I'm too sick at those times to let anyone else know. And when it passes, what is the point of mentioning it then? So I keep my status to myself most of the time, maybe too much, as that probably allows others to think I'm doing better than I really am. But it's just more hassle than it's worth to keep reporting the state of my being and all my health issues. Maybe I prefer suspending reality!

For what it's worth, JenBooks, I do hope you find your best place to live. I lived in New Mexico, Florida, and Colorado during my illness, and all locations had their problems. I don't have the money to build a nontoxic home, but if I could, I would do it, b/c that is so essential to healing. I am highly allergic to aspergillus mold, and all molds affect me seriously, too. MCS affected me severely for years, and still does, although it's a bit better. But I'm always on guard for exposures. Wishing you a wonderful mold-free place to live and a stress-free building experience, if you go that route.

 

Concrobium - For New Homes and Mold Remediation

Hi Jenbooks,

There's much food for thought in what you wrote in your initial post. I'll try to share some of my own thoughts at another time. I did want to mention to you (and others who have mold concerns), a mold remediation and prevention product called Concrobrium.

I mentioned on another thread that a friend/acquaintance of mine had used it successfully in decontaminating his van. Well, I ran into him tonight and we briefly discussed his experience a bit more. He said he bought a relatively small container at Home Depot, worked really well for him, and that it had no odor whatsoever.

He said it's also sold in 55-gallon drums for commercial use. Apparently home builders and mold remediation experts use it extensively when either building or remediating a home. In addition, the Concrobium company works cooperatively with them to ensure it's done properly.

I thought this would be good information for anybody trying to build a toxic-free home. An ounce of prevention is worth a pound of cure. Seems I heard that somewhere along the line. :Retro smile:

Wayne

 

I would just like to add that for any work involving your house, a membership to Angie's List is invaluable. Interview three "A" rated contractors, then pick the one you like the best, and you should be pretty well assured of a good experience.

 

Thank you all for the thoughtful posts. Mark, your life sounds interesting--that you've found such a safe place to live in--wonder how you did it!
Tree, I'm sorry it's so hard for you and I understand and thanks for wishing me well.
Wayne & Caledonia, thanks for your info.