Mold, Dr. Cheney and ME/CFS

[soulfeast]

Posting here and on the mold illness thread I started.. not sure where if it will be seen on my thread and if it belongs here..

Does anyone knwo the cut off for leptin for actos use? I read it somewhere and now I cant find it. My leptin is 11.5 labcorp and retesting with quest.

Thank you...

 

[slayadragon]

Recovery

I put some information about my recovery (or whatever people want to call it) through mold avoidance and other treatments on the following thread:

http://www.forums.aboutmecfs.org/sh...n-My-Recovery-from-ME-CFS&p=124450#post124450

 

[slayadragon]

In case anyone is interested, I put a travelogue of my mold avoidance adventures over the past two years here:

http://twitter.com/SlayaDragon


Just the photos can be found here:

http://twitpic.com/photos/SlayaDragon


Best, Lisa

 

[free at last]

Well i was diagnosed with CFS /ME by Wessley and another psychiatrist at Greenwich hospital a consultant at greenwich hospital also agreed it fitted. so did prof Findly at the harold wood hospital. Thats 4 different specialists. ( two psychiatrists ) couldnt give just a diagnosis of depression, and im sure they very much would have liked to. But my obviouse immune assaults and symptoms prevented those psychiatrists from a non diagnosis of cfs. So yes they could be wrong like the specialists seeing you or the recovered people you mention could also have been wrong. But i assure you wessley Would very much have liked to have diagnosed just depression. rather than cfs. regardless if he considers cfs a somatizing disorder or not. So not sure if you would like to add me to that list, or if not please indulge me while i add myself. I do pretty much agree with nearly everything you say Lisa
Especially this part qoute
But it's also that even if the virus is at the bottom of the whole thing and we wouldn't be sick at all if we didn't have it doesn't mean we can get back to pre-illness just by addressing it. It's not just the genetic changes, it's the fact that our bodies (as Cheney suggests) have fallen behind in doing the things that they need to in order to run optimally. Even a normally functioning system without XMRV (or a re-stemmed one) would have a hard time getting rid of the garbage that has accumulated and doing backlogged repair work. So giving our bodies as much support as we can on our way to healing, using whatever tools we have, seems to me a good idea. end of qoute

Which is exactly what i did. Its very difficult deciding who has a correct diagnoses of CFS and how well they have recovered without actually being with them through there journy and seeing it all first hand. The constant ups and downs 2 steps fowrd 3 back again. Untill it becomes 3 steps foward 1 back again. So one has to be very carefull deciding who fits the picture of diagnosis and recovery without seeing it all first hand often for years. Even the specialists had no real idea what i was going through ( even though of course i tried to tell them ) and really the full horror of it was completely lost on them.

I have just had a very long run of recovered health must be getting on around 3 months now. but i do still seem to relapse occasionaly. i did a few times this year.but i base recovery on how often symptoms strike, how sever they are. and for how long they last.So its true maybe in that context im not fully recovered. but if the recovery swings very heavily in the direction of lasting and prolonged good health ( especially in comparison to how the health was in the past ) then that is certainly a recovery of a very proufound nature.

Even if in the very long term of things its uncertain if that will continue, or the snakes and ladders scenario really to a degree stays with us for life, as im uncertain if complete recovery does happen permanently with those as you point out had a correct diagnosis of CFS/ME.

This is all my vews on the physical recovery of the illness, as the mental trauma ( as in my case ) can be much harder to recover from. often leaving patients with PTSD and phobias, as say a Rape victim might suffer long after the bruises have faded. So i have faired less well on the mental aspect of recovery as opposed to the physical.

And i realize the complete picture is important. But its a little niave not to consider some one partly ( or mostly ) recovered. because of the mental traumas associated with liveing years lying on your back during relapses. ( not saying you have said or thought this ) And really those kind of mental truamas are both a very natural reaction to long term suffering. and in my opinion can be a indication of the severity of the illness in the first place.

Maybe you have never noticed my posts before. As ive talked with you before, but you never responded. The one thing this illness has done to me, is make me very stubborn to the reality of the physical nature of it, and i feel proud of that fact, and also proud to be part of the community that ME/CFS is. Although i often feel a little like a outsider ( and often feel guilty too ) that i have recovered most of my health while others here are still suffering terribly. I know that i was like a lot of the pateints ( some worse some better) and for a very long time. Its not a club i ever wanted to join i nearly lost my mind and my very soul. So i cant really make apologies for coming back out of that dark hole. even though i know a lot are still living there. But i do understand. and its that part that feels guilty. But nothing is certain in life for any of us. and i do realize ( dread ) the thought that at any time i could possibly re enter that dark life. even though i dont think i will. Nothing is certian for any of us, especially as we understand so liitle of the lifetime effects yet of XMRV and any of its implications on all or some of us
Peace Lisa

 

[slayadragon]

I've had conversations on various places -- including on this board -- about the topic of whether ME/CFS patients actually have the potential of recovering.

So far, I've not found any legitimate stories of any severely ill people who just woke up one day and were well. It seems to be something that comes in stages, and residual issues tend to remain.

It's looking at the process of getting better that has the potential of providing insights, I think.

Best, Lisa

 

[free at last]

Well theres Probably reasons for that, its a fair comment, but maybe you wont find those types of recovery, just like you wont find patients with say parkinsons who just wake up one day and are suddently well. And probably for similair reasons. Maybe the correct diagnosis itself excludes such a observation, who knows ? If that turns out to be true, then maybe my experiances are close to how good it gets.. As you have mentioned before that you also have residual issues that remain. Which fits the correct diagnosis or legitemate storys you speak of. As does mine. Again probably for the same reasons.
Free

 

[slayadragon]

I've been trying to put as much information about facts, theories and observations on this thread as possible.

Here's one more observation from those of us who have recovered or experienced strong improvements as a result of biotoxin avoidance.

Many people with ME/CFS comment that they feel much worse in late fall and winter than in summer. Severe crashes often take place. Doctors and patients all express puzzlement about why that should be, since it often occurs even for patients who live in warm sunny places.

Some patients notice that they feel particularly bad on days when the barometer is dropping fast (e.g. when lots of clouds cover the sky). This sometimes is the case in summer too, but more often in winter. Again, the reasons for given for this are unconvincing. Barometric pressure changes from weather are small compared to changes in altitude, but altitude changes rarely prompt a severe crash in ME/CFS sufferers. When symptoms from altitude changes do occur, they're usually much different than symptoms that happen with the weather.

In some cases, people attribute weather changes to something else (e.g. stress or a pathogen problem). Only when people try to look back at their illness over time does the weather effect become clear.

Here are a few threads related to the weather/season effect:

http://forums.aboutmecfs.org/showthread.php?8636-The-November-Factor

https://www.blogger.com/comment.g?blogID=3419356230410306146&postID=564872677927170843

http://www.mecfsforums.com/index.php/topic,2181.0.html

It's our observation that barometric pressure drops -- especially during winter -- lead to a particular type of outdoor biotoxin getting much worse. Although this biotoxin is present in some places year round, it almost always is worse in the winter.

For whatever reason, the presence of this biotoxin seems to be centered around the winter solstice (which is tomorrow). It generally starts the first week of November (it was a week or two early in many places this year) and generally eases up toward the beginning of February.

If we get to a "good" place (one that is generally clear), the weather/season effect in terms of the presence of this biotoxin in the outside air goes away. Winters feel the same as summers. Approaching storms feel like they did when i was a child -- refreshing rather than catastrophic.

The worse the symptoms get in winter, the more improvements should be expected if people move to a good place.

Best, Lisa

 

[jaariel]

"Of all the questions that I get, the ones from CFSers living in Texas, Louisiana, the San Francisco Bay Area and England are the most frustrating to me.

CFSers living in these places are almost always SO sick. Often they express some agreement that mold probably is an issue for them and willingness to try mold avoidance. But I've yet to see anyone living in any of these places make much improvement as a result of addressing mold."

Wow, I live in E TX, close to Louisiana, where the humidity is so high, but I've never heard anyone mention that the sickest often live in this area! Is it the mold/humidity factor?

 

[jenbooks]

"Of all the questions that I get, the ones from CFSers living in Texas, Louisiana, the San Francisco Bay Area and England are the most frustrating to me.

CFSers living in these places are almost always SO sick. Often they express some agreement that mold probably is an issue for them and willingness to try mold avoidance. But I've yet to see anyone living in any of these places make much improvement as a result of addressing mold."

Wow, I live in E TX, close to Louisiana, where the humidity is so high, but I've never heard anyone mention that the sickest often live in this area! Is it the mold/humidity factor?

This is simply not true. It depends on your own body's reactions to a place. Are you in the piney woods? That is a beautiful area we drove through in early Nov with good air. If it's humid there, then you have to be very careful about mold in the way you build or maintain your house, but that's true anywhere it's humid.

Texas has some very good areas. It's a *huge* state. Altitude ranges from sea level at the coast to 5000 feet in some places. It's really silly to cross off states, whose borders are historical and which often have many climate regions (Texas has eight) as being bad for mold.

It is also true that a combo of humidity, bad buildings, air inversions, and pollution can make certain areas very unhealthy. But imo usually there are microclimates not far away that are good. I discovered this for sure in Georgia. Serenbe is in a greenbelt 45 minutes south of the city, and it's the best air in the state, imo. Well, I haven't been high into the mountains. The mountains are good air too but they are densely wooded and sometimes dense woods can have issues in the summer. Even two hours south of Atlanta, the air is not as good as Serenbe. It just happens to be a greenbelt with a lot of ranches and whatever happens to air currents there, the air is really good.

It is very variable.

 

[Dreambirdie]

Many people with ME/CFS comment that they feel much worse in late fall and winter than in summer.

I feel worst in spring, when the tree pollen count peaks. As long as I don't get sick with an infection, I do well in winter.

So much for your theory.

 

[Dreambirdie]

"Of all the questions that I get, the ones from CFSers living in Texas, Louisiana, the San Francisco Bay Area and England are the most frustrating to me.

CFSers living in these places are almost always SO sick. Often they express some agreement that mold probably is an issue for them and willingness to try mold avoidance.

This is BS, not fact. I know people sick with CFS in ALL parts of the country. I feel much better in Santa Cruz, than I EVER did in Colorado.

Your mold avoidance agenda is TOO EXTREME, and people should be very wary of following through with it.

 

[mojoey]

I feel worst in spring, when the tree pollen count peaks. As long as I don't get sick with an infection, I do well in winter.

So much for your theory.

Lisa didn't say "everyone with ME/CFS," and I believe her statement was based off observation and survey of patients not theory. In any case, your experience so far fails to refute her theory.

 

[mojoey]

This is BS, not fact. I know people sick with CFS in ALL parts of the country. I feel much better in Santa Cruz, than I EVER did in Colorado.

Your mold avoidance agenda is TOO EXTREME, and people should be very wary of following through with it.

Lisa has not told anyone to do extreme mold avoidance. I know many patients on this thread are interested in seeing discussion of the role of biotoxins and particularly a certain type of mold in our illness, regardless of their views on extreme mold avoidance.

Nor did Lisa say people outside of those cities are not sick, but rather that people living in certain cities are sick. Those two ideas do not contradict each other.

I would love to hear more on the opposite side of this argument (take Jenbooks for example) but I'm prefer not to hear you twist words and tell Lisa in no uncertain terms to stop discussing her theory. The forum admins and moderators have allowed her discussion to continue so if you have issues with this, take it to the moderators. In my opinion, you are not adding any value to the discussion this way.

 

[slayadragon]

I agree that microclimates are important.

For years, Erik was able to live mostly in Truckee by staying out of the bad areas. Truckee's gotten bad enough in the past year or two that he no longer can even drive through it without experiencing bad effects, but the same principle still applies in other places.

Probably there even are parts of England that are okay. Rumor has it that Sarah Myhill tells some of her patients that they need to move to either the coast or to another country like Spain if they want to get better, but perhaps there are microclimates there that she hasn't found.

The U.S. is a very big place, and fortunately not all of it is bad. By learning how to stay in the good places, I've had a hell of a good time.

Stormy and I spent the evening taste-testng liquor and watching the eclipse -- starting out with Wild Turkey Rare Breed Manhattans, moving on to comparing Balvanie and Macallan single-malt Scotches, and (just as a diversion) finishing up with a bit of sake. I feel pretty tipsy and really happy, and anticipate feelings (as is always the case now when I drink in a good place) perfectly fine tomorrow.

Being well does have its good points.

Best, Lisa

 

[Dreambirdie]

Lisa has not told anyone to do extreme mold avoidance. I know many patients on this thread are interested in seeing discussion of the role of biotoxins and particularly a certain type of mold in our illness, regardless of their views on extreme mold avoidance.

Nor did Lisa say people outside of those cities are not sick, but rather that people living in certain cities are sick. Those two ideas do not contradict each other.

I would love to hear more on the opposite side of this argument (take Jenbooks for example) but I'm prefer not to hear you twist words and tell Lisa in no uncertain terms to stop discussing her theory. The forum admins and moderators have allowed her discussion to continue so if you have issues with this, take it to the moderators. In my opinion, you are not adding any value to the discussion this way.

Lisa is constantly diagnosing people, assessing how sick they are based on a few of their posts, assessing what places are "good or bad" to live in, and telling very sick CFS patients what to do, not just on this forum, but as I have heard on other boards as well. I am not the only one who has had complaints about this.

I received a PM a couple weeks ago from someone who followed Lisa's advice and did not benefit in the least bit from it. In fact, it was DETRIMENTAL for this person to follow through with Lisa's radical mold agenda and cost them both physically and financially. When this person contacted Lisa to inform her about their lack of progress, Lisa suggested they "go camping." I find this appalling, reckless, and dangerous, and rather unconscionable.

I want to make sure everyone knows that Lisa's radical mold avoidance agenda is not a "theory" based on anything resembling "science," but rather a personal obsession with this issue, based on her own limited personal experience.

LISA IS NOT A HEALTH CARE PROFESSIONAL and should not be instructing desperately ill people to pack up their bags and head for the "god forsaken desert." It's crazy, and hideously irresponsible. And yes, I will definitely report it to the moderators.

 

[Dreambirdie]

WHAT the #$$%#! are PLUMES OF "?"

And one more thing... Lisa's concept of PLUMES OF "?" (aka as PLUMES of mysterious, yet still un-identified free-floating biotoxin) is so ridiculous that it borders on absurdity. I find really bizarre that people are willing to throw all rationality out the window to discuss such nonsense, or to even take it seriously.

Has Lisa EVER taken time to collect, measure, qualify or quantify samples of these mysterious PLUMES... in any kind of scientific way? I don't think so! Yet she is basing much of her radical mold avoidance "theory" on their existence... on the existence of a so far unproven, allegedly biotoxic substance, that at this point exists only in her mind.

Desperation leads sik people to do EXTREME things at times. I have been there and done that myself. My intention here is to make sure people don't hurt themselves taking advice from Lisa, advice which she is absolutely NOT QUALIFIED to give.

That is all I have to say about it, and I will say it again if necessary.

 

[slayadragon]

During the four years I've been writing on ME/CFS boards, I've noticed a peculiar thing.

Every winter, one or more boards has a total meltdown. People get inexplicably upset and start attacking one another for very little reason. Usually this leads to many people being banned or storming off. In some cases, the boards close down; in others, they just become a shadow of their former selves.

It's my belief that much of this has to do with the seasonal effect that I mentioned in one of my posts above.

I'm going to do everything I can to prevent that from happening with regard to this topic and this board. It's too important. And the one thing that I am most proud and pleased about with regard to my own recovery is that -- unlike in the past -- I don't go into that "sting them as many times as you can" mode reflexively like I used to. I now have far more ability to focus my attention on efforts that seem likely to be constructive rather than destructive, and I'm much more interested in doing that.

I intend to continue to share information on this board as I see fit. It's a topic that's relevant to ME/CFS, and the board would be a lesser place if I stopped doing that.

I'm not going to argue about it here, though. If anyone has the sincere desire to discuss the topic with me further, including any contradictions that might seem apparent, I would be happy to do that in private. It's a complex topic. I certainly want anyone considering any sort of avoidance to have as much information as they can before pursuing it.

I've already asked a great many people not to come to my defense on this thread or other threads on this board. It's unnecessary and, I feel, will lead to the sort of chaos that this board does not need.

Thanks to all for your help in doing your best to keep this board a place in which all forms of potentially valuable information can be shared in a congenial atmosphere.

Best, Lisa

 

[Martlet]

I intend to continue to share information on this board as I see fit. It's a topic that's relevant to ME/CFS, and the board would be a lesser place if I stopped doing that.

I'm not going to argue about it here, though. If anyone has the sincere desire to discuss the topic with me further, including any contradictions that might seem apparent, I would be happy to do that in private. It's a complex topic. I certainly want anyone considering any sort of avoidance to have as much information as they can before pursuing it.

Moderator: I sincerely hope you will keep to that promise. I has been my experience that it is not seasonal factors that cause board meltdowns, but rather one person expounding the same opinion over and again in every possible thread and, while you may feel very strongly about what you post, it has now been said so many times that no-one can be left in any doubt as to what you believe. Please move on.

 

[Dreambirdie]

Moderator: I sincerely hope you will keep to that promise. I has been my experience that it is not seasonal factors that cause board meltdowns, but rather one person expounding the same opinion over and again in every possible thread and, while you may feel very strongly about what you post, it has now been said so many times that no-one can be left in any doubt as to what you believe. Please move on.

Thank you Martlet. I agree. And I appreciate your taking the time to give your input on this.

 

[mojoey]

Moderator: I sincerely hope you will keep to that promise. I has been my experience that it is not seasonal factors that cause board meltdowns, but rather one person expounding the same opinion over and again in every possible thread and, while you may feel very strongly about what you post, it has now been said so many times that no-one can be left in any doubt as to what you believe. Please move on.

Dear Moderator,

Just for clarification's sake: what do you mean by "Please move on?" Are you also telling Lisa in no uncertain terms to stop discussing her theory?

Update: Btw I'm not trying to pick a fight. I just want clarity on where the moderators stand. I thought we had already cleared the air during the previous episode, so regardless of where the moderators stand, these mixed messages need to stop IMO.