Mold, Dr. Cheney and ME/CFS

[soulfeast]

Very interesting, Lisa. Thank you. I lived in the Ann Arbor area for several years. Do you know of anyway to determine if other areas have this problem?

I did a search and it seems to be enough of a problem that the Virginia Dept of Health is addressing on their website. It is also found in Chesapeake Bay and rivers around here..

I think this is the thick green growth I see alot around here on ponds.. not all are toxic.. I think but... woah. Interesting.

 

[slayadragon]

From what I can see, the best way to know if an area has this problem is to gauge whether you're getting any of the symptoms from the list while living or visiting there.

If so, then the whole area might be a good place to avoid.

However, if you're getting those symptoms at home, it will be difficult to tell if another location is okay. The amount of contamination on clothing and "stuff" will continue to give symptoms, thus making it unclear whether the area that's being tested also has a problem.

Best, Lisa

 

[soulfeast]

I live in VA. I dont understand how close one has to be to the cyanobacteria to have physical issues. How fast it wears off. We have well water.. not sure that would be a factor. I do have many of the symptoms listed above but they can also be caused by lyme .. in other words, Im not sure how specific to cyanobacteria toxins. Given my state of health, its probably good I am leaving this area. I would like to understand beter how these toxins work... do they accumulate like other biotoxins then with the troublesome HLA types.. are they more difficult to remove. I am guessing so. Im also wondering about the outer banks in north carolina. I became sicker after we went there last time and that was years ago. We rented kayaks and were in briney water.. wonder if it was estuary water. My feet started hurting after that... felt swollen on the soles, very strange symptom.

Just googled.. yep.. NC rivers, lakes and estuaries.

The ponds here are sometimes covered with algae.. not sure how to tell if its cyanobacteria.

 

[slayadragon]

Some cyanobacteria toxins are worse than others.

Some cyanobacteria make large amounts of toxins. Some make only small amounts. Many make no toxins at all.

Dr. Shoemaker suggests that toxic cyanobacteria are more likely to be present in places that have been affected by agricultural chemicals or chemicals designed to kill off the cyanobacteria. These wipe out ordinary cyanobacteria, providing an opportunity for mutant strains to take over.

Cyanobacteria toxins are similar to mold toxins in terms of their structure and some of their effects. Generally they are recognized by governmental authorities as being more dangerous than mold toxins.

As is the case with toxic mold, many types of cyanobacteria release spores into the air. CFS patients can be affected by the spores even if they don't go in the water.

However, staying out of suspicious water probably is a good idea.

According to Dr. Shoemaker, people who are "multi susceptible" have a difficult time eliminating both cyanobacteria and mold from their systems. (That's part of what's included in the "multi.") However, "mold susceptible" people (and people in general) may be affected by cyanobacteria toxins.

That is interesting to hear that you did not feel good in parts of North Carolina. Dr. Cheney's office is there, and so many CFS patients have visited at least parts of that state. It would be interesting to hear whether they felt better or worse than usual when they were in the area.

The specific symptoms that I mention above seem to be associated with one particular type of cyanobacteria. It seems to me pretty rare, since I've only encountered it in a few places.

It would be interesting to see if clusters of CFS patients in particular areas suffer from these symptoms. That would suggest that it's something environmental rather than a pathogen that colonizes.

It sounds like maybe it's a good thing that you're moving in a variety of respects. When is moving day?

Best, Lisa

 

[soulfeast]

This is all so crazy. I am wondering if its OK to take chlorella and spirulina. House is ready Sept 10th. So that weekend of the following one. Im running so many tests as well. Also want to test for babesia again to see if its rared up its head. I didnt thnk to think how I felt in general.. I was already sick but there was a turning point about years ago when the muscle weakness and CFS set in. Of course stachy was growing at the same time. Its pretty interesting I lived in Ann Arbor .. had a lot of chronic bronchitis there and the prsence of cyanobacteria there.. then in NC where we vacationed several years and here in VA. Then the clinical diagnosis of lyme and the pos IgG not IgM for babesia. As with lyme the babs testing is often false neg or so thats the story. Im wondering how many cases of mold illness are presenting as babesia clinically. I have felt very toxic last few years. Lymph and in my muscles.. intercystially.. just feel it. (sorry bad spellnig)

 

[slayadragon]

What year did you live in Ann Arbor? When did your CFS start?

I have no idea when that city became especially problematic. I just know that I ran into the outdoor biotoxin that affects me the most at the end of June this year, and that at least one other CFS patient from that area reported those same symptoms (and is doing much better now that she's out!).

That's an interesting question about whether people mistake these symptoms for babesia. I think they're very frequently mistaken as being a bad flu, by those people who run into it abruptly (e.g. when visiting a city where it's at).

But even if it is babesia, moving may help you quickly. It's my impression that babesia is fairly easy to get under control, if the immune system is functioning even marginally well.

I don't know what to say about the supplements. I've been taking chlorella myself and doing fine on it, but that doesn't mean that every brand is okay.

For a while I was trying to take Modifilan or Limu, which have brown seaweed in them and are supposed to chelate mercury. Those gave me bad headaches. I thought at the time that this was related to the mercury detox (a small amount of IV chelation did the same thing), but now I wonder if it could have been a biotoxin contamination. So I'm staying away from those for the time being.

Erik said that in Incline Village, people who were living/working in moldy places became more susceptible to this outdoor biotoxin. They seem to work synergistically.

I'm so glad to hear your moving date is approaching. It sounds like you're going about things in a really good way.

Best, Lisa

 

[soulfeast]

Didnt start then.. I cant remember.. left about two years before my daughter was born. So left around 2005. I looked at Shoemakers site and saw the video about the man with Red Tide poisoning.. not sure how closely related to cyanobacteria of is same thing.. late aug to eary sept 2007 there was a red tide bloom that went all the way up to Delaware.. we were in outer banks near cape hattaras in NC that same time. This was right before my lyme diagnosis.. I left the OB with the swollen soles and legs.. felt all puffy and full of fluid.

Lyme and babs diagnosis (lyme a clinical diagnosis based on symptoms and low cd57) in OCt of 2007.. knew somethign was wrong before then.. had a shaking attack and then on toprol and clonapin after that.. summer before diagnosis i started hving nsuro symptoms like zapping and buzzing and hypersomnia. I developed CFS maybe 18 months ago... First year.. first 6 months on mepron and abx.. digestive tract crashed and lost 30 pounds very fast.. salt C that summer.. so one year.. then neuro symptoms started up very badly fall of 2008.. took flagyl and was not the same after that.. into spring think CFS started.. this past year has been awful but it seems longer than a year.

Joints did not start hurting until I took abx.. then I started hving more "lyme" symptoms.. joint pain, fatigue.. I didnt have fatigue before.. I also have the multi and lyme is another biotoxin. if I really ahve lyme.

Modifilan and Limu have been touted by Short _Rae as biotoxin moppers.. I have taken a lot of modifilan.. ?? I take King Chlorella and Dr Ks brand.. I know others do who have the multi-s and it seems ok for them.

The move is very stressful. Doing the best we can leaving all behind but dog... we will be living near a lake. But this is a transition. I stayed briefly in the same area we are moving to after I left AA area and think I remember feeling pretty good then, so hopefully it will be a good enough rest stop.

 

[soulfeast]

I left about 1995 not 2005...

 

[Sushi]

Hi Soulfeast,

I just came upon this thread and have been skimming it with interest. I haven't been reading the forum much lately because I too have just moved. I was on a beach in Florida that was hit with the oil spill. I sold my place and had only 2 weeks to get out. I sold "with contents" so only took personal stuff with me. Still, the packing and sorting was hell! I feel for you.

Another CFS patient is staying with me and we drove across the country to Albuquerque in hopes of a good environment. We had no time to find a place to live before arriving so ended up at a really crumby week-by-week rental--tiny, grungy and mold in the A/C. Finding an apartment was exhausting but have just rented one that seems very clean, high on the slope of a mountain. Next, get some basic furniture and move in.

This has been the hardest thing I or my friend have attempted since sick. We are eager to just sleep and sleep.

Thinking of you and hoping your move goes well.

Sushi

 

[soulfeast]

Thank you, Sushi. Let me know how it goes for you there. We will be looking out that way. Being sick makes it so much harder on top of how altering this is.. I hope those of us who are making these moves can keep up with each other and share what we learn. This has been torturous in so many ways.

 

[onebush]

Dr. Cheny's "Control Points" Approach to Address CFS Viruses

Hi Lisa

Yes, I've always lived in the UK. I am better in hot, dry climates though. I think what triggered my relapse was a ski-ing accident - the minor pain from that escalated over a year to all over pain. This was diagnosed as FM, and my ME got much worse soon after.

Jenny

Hi,

I relapsed after a eight year remission. This time it is a bit different. I could barely raise my head off the pillow in the 90's. I have more pain and fatigue this time. Everything has been put on hold. It is hard to believe it happened, I thought I had beat it and my doctor said he had never seen anyone come as far. I knew it was coming back when the sun started making me sick and the panic atrtacks started.

Margaret

 

[Dreambirdie]

Hey there moldies! I have not read all of this thread, and I'm sorry if you've already answered this question... but is there a BLOOD TEST to prove that mold exposure is making you sick... one that would stand up in court as evidence?

Please let me know. thanks

 

[floydguy]

Hey there moldies! I have not read all of this thread, and I'm sorry if you've already answered this question... but is there a BLOOD TEST to prove that mold exposure is making you sick... one that would stand up in court as evidence?

Please let me know. thanks

I really can't endorse this test as I don't know a whole lot about it but Real Time Labs in TX has a urine test. It's often discussed on the Sick Buildings Yahoo Group list. I believe it has been used as evidence. Jack Thrasher, a toxicologist, recommends it to members of this forum.

I'd be curious to hear whether Lisa has any thoughts on Real Time Labs.

 

[Forebearance]

Hi Dreambirdie!

I would trust Dr. Shoemaker's panel of blood tests the most to diagnose mold poisoning.
One of them is the genetic test that tells you if you have a vulnerability to mold toxins.
But I'm interested to hear if others think different tests are better.

 

[floydguy]

Hi Dreambirdie!

I would trust Dr. Shoemaker's panel of blood tests the most to diagnose mold poisoning.
One of them is the genetic test that tells you if you have a vulnerability to mold toxins.
But I'm interested to hear if others think different tests are better.

Hi Forebearance,

I don't think Shoemaker's tests hold up in court. Unless I am mistaken there is no direct evidence that mold poisoning is the reason for the abnormal test results. The Real Time tests, I believe, will tell you that you have X amount of X mold in your system.

Andrew

 

[soulfeast]

dont know about holding up in court but do know Dr T would be the one who would know.. just learned after the fact that it is best to do early AM urine.. and makes sense.. and after I called RTL and was told any time of day spot urine is fine.. the test is very expensive and I wish I had listened to my gut and used first AM urine. Mine was neg and ive been living with stachy. I also heard from someone else who had pretty extensive stachy exposure that hers was also neg. ive wondered about sequestered fat soluable toxins showing up on a urine test. One would have to be eliminating... and you would think at least first AM urine of a 24 hour sample.. not a random spot urine. A bit irritated at this.

Added with edit: I am referring to the urine mycotoxins test. The DNA tests would specifcally identify funguses in tissue, sputum, nasal secretions. Each test is separately chosen, so you take them all or choose the most likely culprits.. if there is a panel I missed that they carry, please let me know..

 

[slayadragon]

Hi Soulfeast,

I just came upon this thread and have been skimming it with interest. I haven't been reading the forum much lately because I too have just moved. I was on a beach in Florida that was hit with the oil spill. I sold my place and had only 2 weeks to get out. I sold "with contents" so only took personal stuff with me. Still, the packing and sorting was hell! I feel for you.

Another CFS patient is staying with me and we drove across the country to Albuquerque in hopes of a good environment. We had no time to find a place to live before arriving so ended up at a really crumby week-by-week rental--tiny, grungy and mold in the A/C. Finding an apartment was exhausting but have just rented one that seems very clean, high on the slope of a mountain. Next, get some basic furniture and move in.

This has been the hardest thing I or my friend have attempted since sick. We are eager to just sleep and sleep.

Thinking of you and hoping your move goes well.

Sushi

I thought that Albuquerque was pretty good, and that's especially the case on the ridge that surrounds the city. The outdoor biotoxins that bother me seem to sink down to the ground fairly easily, so being even a few hundred feet above a surrounding area makes a big difference.

If you can manage to get into the Indian reservation territory west of the city on occasion, you may find that you do even better. Even five miles outside the populated part may make a huge difference.

I find that if I spend time in really good areas, I can tolerate more exposures the rest of the time.

I am looking forward to seeing how you do now that you are in a better place!

Best, Lisa

 

[slayadragon]

Hi,

I relapsed after a eight year remission. This time it is a bit different. I could barely raise my head off the pillow in the 90's. I have more pain and fatigue this time. Everything has been put on hold. It is hard to believe it happened, I thought I had beat it and my doctor said he had never seen anyone come as far. I knew it was coming back when the sun started making me sick and the panic atrtacks started.

Margaret

Dod you have any idea what caused your relapse? Do you think that it was mold related?

Did you move? Where did you live?

Best, Lisa

 

[slayadragon]

Hey there moldies! I have not read all of this thread, and I'm sorry if you've already answered this question... but is there a BLOOD TEST to prove that mold exposure is making you sick... one that would stand up in court as evidence?

Please let me know. thanks

I've yet to find any tests that are wholly persuasive in themselves to people who are disinclined to believe that toxic mold is both present and making people sick.

And unfortunately, just about everybody is disinclined to believe that mold is an issue.

If a really conclusive test can be found and shown in scientific studies to work, it will change everything.

I'd like to hear whatever experiences people have with various tests.

Best, Lisa

 

[slayadragon]

I put some academic articles related to the measurement of patient exposure to toxic molds on this thread (currently Post #7):

http://www.forums.aboutmecfs.org/sh...ic-Mold-Research-Articles&p=118414#post118414