I was reading some posts and saw this book mentioned. I read the reviews on Amazon and it was talking about Lyme, neurotoxins, etc...
For anyone that has read it, does it give any info on what to do for it? Other then moving, etc... Is this something that requires a detoxing to get your system back on track?
Thanks, Terri
Posted by riversinger (Member # 4851) on :
The book outlines a whole protocol, that is individualized depending on the person. It gives a lot of detail, but you have to be persistent in reading. It is very technical, mixed in with a lot of anecdotal material.
If mold is an issue, you MUST do something about the exposure. It doesn't always mean moving, but sometimes it is the only choice. I was so sick last winter, I really thought I was dying. I moved 4 months ago, and have only just found a place clean enough to move into permanently. It has been totally worth it.
Other treatment is a binder (cholestyramine) to remove neurotoxins, treatment of antibiotic resistent Staph colonization in the sinuses that releases cytokines and damages hormones, and normalization of specific labs in each patient's case.
For me, we have found that the primitive part of my immune system, the complement, is overactivated, and I am considering the treatment recommended, which is injection of a drug used to treat anemia. Others need to take nutritional supplements, or hormones, based on their lab tests. The book goes into details on these various treatments.
I've had the best response to this protocol of anything I've done. You still have to treat Lyme and other coinfections. Only 25% of the population fits into the group that needs this treatment. So it won't work for everybody. But my experience has been very good.
I went from the worst I've been in 14 years of illness, four months ago, to starting to see a possibility for remission now.
Posted by lymeout (Member # 8045) on :
I don't know if the protocol is detailed in the book, but there is a website www.chronicneurotoxins.com This is the website of the author. My daughter has used the cholestyramine/actos protocol and helped her.
Posted by riversinger (Member # 4851) on :
Thanks, Shelley!
I've done really well on this protocol. First the CSM really lowered my pain profile. Now the Staph treatment has rowsted out a hidden Bartonella infection. I'm starting to have whole weeks of good days.
I haven't decided for sure about the next step, because it is more experimental, but so far Dr. s has done pretty good by me. I may just give it a try.
How are things looking for you?
Posted by Foggy (Member # 1584) on :
River, what did the Staph treatment consist of?
I too Rousted up the mold treatement of CSM + allergy shots for specific molds.
Mom, my LLMD feels that Chronic Lyme is an amalgamation of Lyme, coinfections, and other toxins such as mold and metals. I had to find a LLMD who was adept at treating all of the above.
Posted by riversinger (Member # 4851) on :
Hi Foggy!
Dr. S finds that patients with low MSH (melanocyte stimulating hormone) often have this multiply antibiotic resistent staph. You have to do the testing correctly, and they will test for which abx it is sensitive to.
You then treat with a triple abx therapy, Rifampin, one abx that came up on the sensistivity, and Bactroban ointment in the nostrils.
Last time I got the test done, I heard the lab changed. If you are interested, I would contact his office and find out where he recommends to get the test. It is called an Api-Staph.
I also really recommend you get the book. Seems like you have really been through it with this mold and Lyme stuff. I don't know if it would help you, but I think people do better if they understand how the protocol works, and what they need to do. And I need to figure out how to get a commision on these books! Posted by LC (Member # 7070) on :
Riversinger- Could you elaborate on what you mean by the staph treatment rousted a hidden Bart infection?
I am beginning to think bart might be a hidden issue for me. I'm already treating for Babs.
I went through CSM, not sure if it worked.
I am MSH deficient & genetically not able to rid myself of toxics very well.
I did the nasal staph treatment this summer and I believe it helped with my fatigue & headaches.
The only abx that came back susceptible from the nasal swab test was Cipo. The lab is Esoterix (www.esoterix.com).
Cipro made me feel good but I stopped because of tendon pain. I still don't know if that was a bart herx or tendon side effect.
LC
Posted by riversinger (Member # 4851) on :
LC, when I started on the treatment for the Staph, I was very aware that the meds are also used to treat Bartonella. I have suspected Bart in the past, but always came up negative on testing.
With the Staph treatment, the classic Bart symptoms where very bad. Pain in the soles of my feet and in my lower legs. Headaches. Swelling in lymph glands, especially tonsils and behind my knees. My LLMD told me this could all be due to Staph die off, but when I herxed again really hard at one month of treatment, I convinced him to test for Bartonella.
This time I came up postive for IgG, which is consistent with 1) an infection which is being treated, and 2) a possible cross reaction with a different Bartonella strain than henslae.
So we are going to retest the Bartonella to see if titers are increasing or decreasing, and retest the Staph to see if that has been eradicated, to see what to do next.
As far as being able to tell if the CSM works, it helps to do the labs. CSM should lower Leptin and MMP-9, and increase VEGF, for starters. There are other markers that should normalize, too. If those markers aren't bad to start with, maybe you don't need CSM?
Then, if you still have symtoms, you might need to do some of the next steps, like treating the Staph. CSM is only one step.
Posted by mom2matt (Member # 7478) on :
Can this staph (in the sinuses) be tested at your regular PCP? Or is it tested through a special lab? How do they test it?
I am just wondering...might have nothing to do with each other...but I use a CPAP machine with a humidifier, wonder if germs/molds have caused some problems because of the CPAP?! I know my sinuses are more stuffy since starting the CPAP.
Any thoughts?
Thanks for all your responses.
Terri
Posted by Marnie (Member # 773) on :
For molds in your environment, you might want to read this:
English Ivy: A Fix for Allergies?
Researchers Say the Plant Might Be as Useful as an Inexpensive Air Cleaner
By Miranda HittiWebMD Medical News Reviewed By Louise Chang, MDon Monday, November 07, 2005
Nov. 7, 2005 -- English ivy may help you breathe easier, especially if you have allergies, new research shows.
The research shows that the plant helps clean air of allergens such as mold and animal feces. That could make English ivy an inexpensive alternative to commercial air-cleaning devices, researchers told participants of the American College of Allergy, Asthma, & Immunology's annual meeting.
If you've got kids or pets, take care about where you place English ivy. The plant is toxic, so keep it away from animals or young children who might consume it.
Cleaner Air English ivy's air-cleaning abilities were recently tested.
irst, researchers put moldy bread and dog feces in containers. Then, they checked how much mold and feces were in the containers' air at the start of the study. Next, English ivy was added to each container and repeat measurements were taken at baseline, then six and 12 hours later. Six hours later, 60% of the airborne-mold had vanished from the air around the ivy. Almost as much of the airborne feces were also gone from the air (58%).
After six more hours the air was even cleaner. More than three-quarters of the airborne mold was gone (78%). So were nearly all of the airborne feces (94%), the study shows.
Ivy Insights "As airborne mold spores have been linked to a variety of serious illnesses, English ivy could reduce indoor mold counts," write the researchers.
They included Kenneth Kim, MD, of Allergy, Asthma, & Respiratory Care Medical Center in Long Beach, Calif. They add it might also be a good idea to grow English ivy outside, where animal feces usually are.
But you may want to think twice before you do that. English ivy can spread across the landscape, smothering other plants in its path and creeping up trees.
SOURCES: American College of Allergy, Asthma, & Immunology's annual meeting, Anaheim, Calif., Nov. 4-9, 2005. National Parks Service, "What Is English Ivy?" News release, American College of Allergy, Asthma & Immunology.
Posted by riversinger (Member # 4851) on :
mom2matt, the Staph testing is done a very particular way, and has to be done by a particular lab. They are having some trouble with the current lab and are in the process of switching to another one, so I don't have a name yet.
But you have to clear the toxins first.
I would guess the c-pap could aggaravate things if it isn't scupulously clean.
Marnie, the Ivy might help for people with allergies. This isn't an allergy, and it only takes very minute quantities of mold to cause a problem, so I don't recommend people rely on it for this. Plus, my experience has been that any indoor plants encourage mold in their damp soil. i had to give all of mine up, or put them outside where I can look at them through a window. Posted by Foggy (Member # 1584) on :
Terri, a friend of mine mentioned that most CPAP machines have washable filters and the masks and tubing supposed to be cleaned often with vinegar regularly.
Posted by Tj33 (Member # 7214) on :
My wife has a CPAP and she cannot use the humidifier. It causes all sorts of problems with the sineses..
Using the humidifier depends on the relative atmoshpere humidity. When the air is very dry in winter and at 5%,like Denver, you will need it...
Above 40% you probably won't. Depends on you..
Plus, she is religious about cleaning the machine and its parts. She changes the filters often....
The mask wears out and must be changed ever so often. Also the fit is critical...
Snoring is not normal. Probably sleep Apnea... Heavy snorers quit breathing and when they start gasping for air this causes the sound... Most sufferers cannot get a good night's sleep. They are tired all day and nap most of the day..
Apena can be fatal as someday they may not wake up...
The CPAP machine raises the breathing air pressure and forces air into the lungs. Thus they can get a good nights sleep and wake up refreshed with lots of energy..
When wife went on the machine she would wake up a totally different person...
I believe my wife's asthma and sleep apena is related to her years of lyme infections...
There are forums on the web that go into CPAP problems.... google CPAP forum
![[Big Grin]](biggrin.gif)
![[Frown]](frown.gif)