posted
Hi All, my first post here, so be nice! ;-)
I believe I was infected with Lyme in summer 2002, didn't get diagnosed until March 2006. Went on long term health disability in Dec 2006, still can't work.
I've been keeping a daily health log for over a month now, and I took that to my Lyme doc appt a few weeks ago so I made sure I covered all the key health changes the occurred on a near daily basis. About 2/3 of the way through my appt, he asked me if I'd ever been exposed to mold(s) or toxic chemicals.
I've been working with toxic chemicals since 1985, have been poisoned by methanol several times, used TCE without a fume hood or breathing filter (it's been banned for a long time now because it was so toxic), plus plenty of pesticides from golf courses and my own yard, and lots of ant/roach/wasp poison sprays over the years. For several years I was slowly being poisoned by paint thinner and other toxic vapors in my office at work back in the mid 90's --- the wall between the paint shop storage room and my office didn't go all the way to the ceiling! There were several of us that suffered from dizziness and a feeling of being drunk on occasion in the middle of the day, and finally one guy who was getting really sick called in OSHA to test the air and they discovered the problem.
I also had a severe black mold in my master bathroom for years that I finally fixed within the last year, and the top floor of my house has flooded once, and the basement 4 times (never cleaned or replaced the basement carpets, I just dried them out). I've known for many years that when I go on travel my sinus congestion and dry-eye symptoms greatly improve or disappear altogether, so I've suspected my house was toxic in some manner for nearly 10 years. So my doc asked me to get a home test kit for mold and take this online vision test at http://www.chronicneurotoxins.com/ to see if neurotoxins are hurting my vision (which has been very poor lately).
Bad news with the mold tests. The kit I put in the living room right next to the couch where I spend every evening was positive, and so was the one in my basement near the furnace. I did some laundry the other night, and the washing machine leaked (again). Been an ongoing problem for over a year, I could not figure out where the leak was coming from. So I moved the washing machine and found a huge black mold colony under the washer, which I scrubbed with multiple chemicals, even used a power belt sander to grind into the surface to get at some black spots under the surface. I took apart the washing machine but couldn't find any evidence of an internal leak, but the side that faces the dryer had huge water stains on it, and so did that side of the dryer. It's like the water is overflowing, probably during the spin cycle, and is spitting out of the side of the washer. I taped up the suspect joints, will see what happens next time I use it. I watersealed the concrete so hopefully the mold won't penetrate the concrete again.
My Lyme doc made the connection between my acupuncture detox sessions where my liver gets stressed/overloaded and a severe short term drop in my health. He says the reason I feel awful the days after some acupuncture treatments is that those toxins have been stored in our bodies all our lives (plus the toxins leftover from the Lyme treatments), and when she triggers something that releases toxins from my brain or elsewhere it overloads my liver and kidneys and that's why I get so sick. The few times I've done a special 7-day herbal liver/colon/gall bladder detox I've felt like a new man afterwards, at least for a while. So mix that knowledge in with lyme disease, a recurring systemic yeast infection, and my exposure to many neurotoxins over the last 20 years, and he thinks I am suffering from a neurological toxic syndrome on top of everything else. He has been very disturbed by my constant up and down health and my pituitary/adrenal gland problems (they're not working), and he thinks I should have been cured by now if it were simply lyme disease I was suffering from.
So took I that online vision test today, and failed it. My Lyme doc already knows what the treatment profile is, you use this drug called Cholestyramine (CSM)for 2-6 weeks, it binds with the toxins and eliminates them from your system.
I also have an appt. with an endocrinologist at Johns Hopkins to get a bunch of tests done on Oct 27), I've found at least 7 hormones/chemicals associated with the pituitary and hypothalymus glands that I've never been tested for while googling this VCS test and treatment today.
So that's my (not short, but it could've been a lot longer! ;-) story, and I wonder if anyone else has ever heard of that website and treatment for post lyme problems?
Posts: 16 | From maryland | Registered: Jul 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome mtb...
Sorry to hear you've been so ill.
Just wondering...
Have you been treated for the Lyme RECENTLY? Were you tested and treated for coinfections?
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Welcome mtb666 -
As many here have trouble reading large blocks of type, I'll break up the paragraphs with lots of white space so you'll have more replies.
To first address is what you need for the " . . . appt. with an endocrinologist at Johns Hopkins to get a bunch of tests done on Oct 27) . . . "
Sorry, I'm too tired to answer, but you will receive many replies as most of us are very familiar with the neurotoxin issue.
Good luck.
==========================
Hi All, my first post here, so be nice! ;-)
I believe I was infected with Lyme in summer 2002, didn't get diagnosed until March 2006. Went on long term health disability in Dec 2006, still can't work.
I've been keeping a daily health log for over a month now, and I took that to my Lyme doc appt a few weeks ago so I made sure I covered all the key health changes the occurred on a near daily basis. About 2/3 of the way through my appt, he asked me if I'd ever been exposed to mold(s) or toxic chemicals.
I've been working with toxic chemicals since 1985, have been poisoned by methanol several times, used TCE without a fume hood or breathing filter (it's been banned for a long time now because it was so toxic),
plus plenty of pesticides from golf courses and my own yard, and lots of ant/roach/wasp poison sprays over the years.
For several years I was slowly being poisoned by paint thinner and other toxic vapors in my office at work back in the mid 90's --- the wall between the paint shop storage room and my office didn't go all the way to the ceiling!
There were several of us that suffered from dizziness and a feeling of being drunk on occasion in the middle of the day, and finally one guy who was getting really sick called in OSHA to test the air and they discovered the problem.
I also had a severe black mold in my master bathroom for years that I finally fixed within the last year, and the top floor of my house has flooded once, and the basement 4 times (never cleaned or replaced the basement carpets, I just dried them out).
I've known for many years that when I go on travel my sinus congestion and dry-eye symptoms greatly improve or disappear altogether, so I've suspected my house was toxic in some manner for nearly 10 years.
So my doc asked me to get a home test kit for mold and take this online vision test at http://www.chronicneurotoxins.com/ to see if neurotoxins are hurting my vision (which has been very poor lately).
Bad news with the mold tests. The kit I put in the living room right next to the couch where I spend every evening was positive, and so was the one in my basement near the furnace. I did some laundry the other night, and the washing machine leaked (again).
Been an ongoing problem for over a year, I could not figure out where the leak was coming from. So I moved the washing machine and found a huge black mold colony under the washer, which I scrubbed with multiple chemicals, even used a power belt sander to grind into the surface to get at some black spots under the surface.
I took apart the washing machine but couldn't find any evidence of an internal leak, but the side that faces the dryer had huge water stains on it, and so did that side of the dryer.
It's like the water is overflowing, probably during the spin cycle, and is spitting out of the side of the washer. I taped up the suspect joints, will see what happens next time I use it. I watersealed the concrete so hopefully the mold won't penetrate the concrete again.
My Lyme doc made the connection between my acupuncture detox sessions where my liver gets stressed/overloaded and a severe short term drop in my health.
He says the reason I feel awful the days after some acupuncture treatments is that those toxins have been stored in our bodies all our lives (plus the toxins leftover from the Lyme treatments),
and when she triggers something that releases toxins from my brain or elsewhere it overloads my liver and kidneys and that's why I get so sick.
he few times I've done a special 7-day herbal liver/colon/gall bladder detox I've felt like a new man afterwards, at least for a while.
So mix that knowledge in with lyme disease, a recurring systemic yeast infection, and my exposure to many neurotoxins over the last 20 years, and he thinks I am suffering from a neurological toxic syndrome on top of everything else.
He has been very disturbed by my constant up and down health and my pituitary/adrenal gland problems (they're not working), and he thinks I should have been cured by now if it were simply lyme disease I was suffering from.
So took I that online vision test today, and failed it. My Lyme doc already knows what the treatment profile is, you use this drug called Cholestyramine (CSM)for 2-6 weeks, it binds with the toxins and eliminates them from your system.
I also have an appt. with an endocrinologist at Johns Hopkins to get a bunch of tests done on Oct 27), I've found at least 7 hormones/chemicals associated with the pituitary and hypothalymus glands that I've never been tested for while googling this VCS test and treatment today.
So that's my (not short, but it could've been a lot longer! ;-) story, and I wonder if anyone else has ever heard of that website and treatment for post lyme problems?
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
While I can't read your entire post now, in light of your endocrine appt. on the 27th, I suggest ordering this very minute the book below and read all you can about treating the endocrine system for lyme patients. Singleton addresses that VERY well.
And the second book may seem like its just about obesity, but I highly suggest that, too, as it throughouly - uh - address the endocrine dysfunction with lyme and Cpn.
The Potbelly Syndrome: How Common Germs Cause Obesity, Diabetes, And Heart Disease (Paperback) - 2005
by Russell Farris and Per Marin, MD, PhD
8 customer reviews and you can look inside the book
========= =========
And, I have to add that mold - or other neurotoxins can be huge.
But if you have lyme or other infections - you must address the infections, too. Simply doing detox stuff is not enough.
You may not have lyme, but if you do you REALLY need to know BEFORE seeing an endocrinologist.
Or be sure your endocrinologist is LL or it could be a huge waste of time and if any sort of steroids are prescribed (or even a challenge test) . . . if lyme is present, lyme can blossom.
Singleton's book suggest a safe use of very low dose Cortef and as he outlines it, can be safe for lyme patients. Most endocrinologists are not away that lyme patients (or patients with other chronic stealth infections) may need different treatment.
posted
Red flag -- a doc who says you should have been cured from Lyme with treatment that has been done. Unless coinfections have been addressed you can treat Lyme forever and never get well.
My suggestion is to get the bloodslide test from Fry Labs -- in my opinion the best test available for babesia and bartonella.
The mold issue could be an serious problem, but if you also have Lyme and coinfections everything needs to be treated. Just treating the mold issue will not get you well.
The endocrinology appointment is probably a good idea, but you need to be aware that they most likely will not make the connection between tickborne illnesses and pituitary/adrenal/hormone issues.
Good luck and keep us posted.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
*****
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- FULL ARTICLE AT LINK ABOVE.
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
=====================
The concept of "post-lyme syndrome" is discussed here (and suggested that it's undertreated lyme):
Excerpt:
`` . . . the immune system does not begin to repair itself until the beginning of the fourth month of antibiotic treatment. . . . ``
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- 2/3 down the page, you can download Guidelines for the management of Lyme disease
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Yes, I've been on cholestyramine ever since I started lyme treatment. I have had the HLA testing recommended by Dr. S. and apparently my sister and I are both genetically less able to get rid of borrelia and mold toxins than most people.
Taking Cholestyramine is only the first step in helping someone with biotoxin illness. You will probably need to be on cholestyramine for much longer than 6 weeks if you are still being exposed to mycotoxins. Please read Dr. S's website and his book, Mold Warriors, in order to get a full understanding of what you need to do.
Mold spores are airborne. When you clean up the mold, if not done correctly, you will cause a huge amount of mycotoxins to be released into the air.
You will need to wear a special mask and gloves while cleaning mold so as not to breath in the toxins. You should wear clothes that can be disposed of or take them off immediately and wash them.
Close up the vents in the room you are working on to keep the toxins from spreading. Also seal up the room from other rooms. Bag any moldy materials and remove them carefully so as not to contaminate any other rooms.
There is a big danger is stirring up the toxins AND in spreading them around your house. MOST important is getting rid of the moisture that is causing the mold growth.
Many people in your situation hire a professional to remediate the problem. Not only does one need to be very knowledgable so as not to contaminate themselves and their whole house but those of us who are already sick can get much sicker.
Some people leave everything behind, furniture, clothes etc.. becauase it is all contaminated and they cannot tolerate the toxins and still remain well.
Killing the mold will not get rid of the mycotoxins. You will need to completely clean it up. If you have mold on the walls, you will likely need to remove the wallboard and replace it. Mold has tendrils that grow into the wall. You could have a large growth on the inside of the wall.
Borrelia toxins can be similar to mycotoxins for some of us. That is, we do not make enough antibodies to remove them all from our bodies. You can find out if you are one by having the HLA testing.
You may find that with your exposures to mold and borrelia, you may become really really sick when you start cholestyramine. Many lyme patients must take actos along with cholestyramine so that they can tolerate the cholestyramine. Actos downregulates some of the hormones that get stirred up with cholestyramine.
Search here at lymenet for more info. Given your exposure, you will want to learn as much as possible about how to deal with mycotoxins. It is not well understood and may even be denied by mainstream medicine so don't expect to get help from most doctors.
Take care,
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
TerryK has great info.
--
This was in the news recently - about a certain kind of bed.
One other consideration for anyone with health problems: Mold?
This brand of bed has mold problems. If you have this and open it up, be VERY careful in how you do that. Get expert advice first.
posted
[QUOTE]Originally posted by Tincup: [QB] Welcome mtb...
Sorry to hear you've been so ill.
Just wondering...
Have you been treated for the Lyme RECENTLY? Were you tested and treated for coinfections?
I was treated for the standard co-infections, but never actually tested for them (tough to find, IIRC). The only confirmed co-infection is systemic yeast due to multiple recent surgeries and broad spectrum antibiotics for them, probiotics alone didn't solve the problem. I'm now on something called ThreeLac, a batch of 3 bacteria that feast on only yeast, and I think I've seen improvement in the first 2 weeks of treatment (sinus problems are way down, for one).
Posts: 16 | From maryland | Registered: Jul 2008
| IP: Logged |
posted
[QUOTE]Originally posted by Keebler: [QB] -
Welcome mtb666 -
As many here have trouble reading large blocks of type, I'll break up the paragraphs with lots of white space so you'll have more replies.
Thanks. I knew it was going to be a tough read for some.
To first address is what you need for the " . . . appt. with an endocrinologist at Johns Hopkins to get a bunch of tests done on Oct 27) . . . "
My adrenal glands failed in late 2006, and my pituitary gland failed sometime during 2007. Don't know about the hypothalamus yet, I just have a bunch of non-connected data points from various blood tests that don't paint a full picture of my endocrine functions. Ergo, the need to see an endocrinologist to get a full profile done all at once to try to pinpoint a possible cause.
Posts: 16 | From maryland | Registered: Jul 2008
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posted
[[QUOTE]Originally posted by Keebler: [QB] -
You may not have lyme, but if you do you REALLY need to know BEFORE seeing an endocrinologist.
I definitely had Lyme, synovial fluid tests from my knees showed 8 positive bands on the Western blot.
Or be sure your endocrinologist is LL or it could be a huge waste of time and if any sort of steroids are prescribed (or even a challenge test) . . . if lyme is present, lyme can blossom.
My lyme doc warned me not to expect any miracles from the endo, and that almost none of them are LL. I'm already on hydrocortisone for almost a year, 20 mgs right now, since my cortisol levels dropped to zero when I was having my severe hive and chronic fatigue stage. When I slowly ramped down from 15 mg to zero from Jan to June this year, my health got significantly worse. I know that hydrocortisone can really mess up a lot of things, but since my body isn't producing any cortisol I can't live without it right now. And I need Adderall XR just to keep awake and alert during the day. Tried taking Provigil for a while, but it didn't do a damn thing for my sleepiness and inability to wake up in the morning.
Posts: 16 | From maryland | Registered: Jul 2008
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posted
[[QUOTE]Originally posted by Keebler: [QB] -
You may not have lyme, but if you do you REALLY need to know BEFORE seeing an endocrinologist.
I definitely had Lyme, synovial fluid tests from my knees showed 8 positive bands on the Western blot.
Or be sure your endocrinologist is LL or it could be a huge waste of time and if any sort of steroids are prescribed (or even a challenge test) . . . if lyme is present, lyme can blossom.
My lyme doc warned me not to expect any miracles from the endo, and that almost none of them are LL. I'm already on hydrocortisone for almost a year, 20 mgs right now, since my cortisol levels dropped to zero when I was having my severe hive and chronic fatigue stage. When I slowly ramped down from 15 mg to zero from Jan to June this year, my health got significantly worse. I know that hydrocortisone can really mess up a lot of things, but since my body isn't producing any cortisol I can't live without it right now. And I need Adderall XR just to keep awake and alert during the day. Tried taking Provigil for a while, but it didn't do a damn thing for my sleepiness and inability to wake up in the morning.
Posts: 16 | From maryland | Registered: Jul 2008
| IP: Logged |
posted
[[QUOTE]Originally posted by Keebler: [QB] -
You may not have lyme, but if you do you REALLY need to know BEFORE seeing an endocrinologist.
I definitely had Lyme, synovial fluid tests from my knees showed 8 positive bands on the Western blot.
Or be sure your endocrinologist is LL or it could be a huge waste of time and if any sort of steroids are prescribed (or even a challenge test) . . . if lyme is present, lyme can blossom.
My lyme doc warned me not to expect any miracles from the endo, and that almost none of them are LL. I'm already on hydrocortisone for almost a year, 20 mgs right now, since my cortisol levels dropped to zero when I was having my severe hive and chronic fatigue stage. When I slowly ramped down from 15 mg to zero from Jan to June this year, my health got significantly worse. I know that hydrocortisone can really mess up a lot of things, but since my body isn't producing any cortisol I can't live without it right now. And I need Adderall XR just to keep awake and alert during the day. Tried taking Provigil for a while, but it didn't do a damn thing for my sleepiness and inability to wake up in the morning.
Posts: 16 | From maryland | Registered: Jul 2008
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posted
I became disabled in 1999 and had been complaining of just not feeling well and fatigue for over 5 yrs at that time. I just kept going downhill until 1999.
I was down to 98 lbs and pretty much non-functional It took me 2 yrs of living thru hell before getting diagnosed with adrenal insufficiency by a cortrosyn stimulation test and put on cortisol.
I was also having really low blood pressures and started florinef---it's an antidiuretic and helps my body retain volume so I keep a blood pressure. got a little better but still felt really bad and mostly homebound then flew to L.A. to see an endo I found on-line who is really good with endo problems. I had already seen 6 endo's.
He diagnosed my pituitary problem and did an arginine stimultion test and I was put on growth hormone---helped some and with stamina so I was able to be out a couple hours a day. Kept feeling bad and knew something else was wrong so had lots of testing for the tingling in my legs was taking b12 and my neck had been painful for years.
I was tested for heavy metals and was high in some especially lead so started IV chelation using EDTA. I started having lots of neuro symptoms after, lost 10 lbs, couldn't sleep due to the burning sensations on the bottom of my feet and felt surges of burning pain thru my body, my neck and upper back were killing me and had terrible muscle spasms, my sight got really weird like I was looking thru wax paper and lots of floaters, felt like the flu and had horrible constant exhaustion. I could barely care for myself. My B/P started spiking and I went to the E.R. I was admitted to the hospital for a week and my pressure got as high as 220/130. I really didn't think I was going to make it. The Dr's thought I had a pheochromocytoma or carcinoid cancer. Couldn't find it though.
I had been tested for Lyme by Elisa 4 times in the past and it was always negative. I did some research and with all the crap I had been going thru Lyme sounded like a big possibility so I found the nearest LLMD. He diagnosed Lyme( I had a couple starred bands for lyme specific I think 34 and 39---several others to, can't remember off the top of my head right now)
This was last year. I've been on oral antibiotics with no improvement for a year. Got a PICC line and have been on Rocephin 2 mos and then tried vancomycin. I'm now waiting for my LLMD to fax what he wants to try next.
I still haven't had big improvements. Last month my LLMD put me on the cholestyramine and it helps the burning sensations. He talked about the neurotoxins and I was probably unable to clear them and thinks I had a major herx with to much toxin in my body with the EDTA.
I am still not doing very well. Pretty much homebound. I have exhaustion daily and symptoms of the disease or herxing ?? I don't know which. I don't know if the herxing is stressing my body out to the point I need more cortisol or not. The Dr's just say try and see what it does.
Presently my hair is falling out---abnormally not just a few strands, the joints in my feet hurt continuously and when I walk my leg muscles ache. These are new symptoms. I'm getting my thyroid labs checked for the gazillionth time this week.
I have also found I have obstructive sleep apnea and now wear c-pap and they found a genetic disease called hemochromotosis. No one in my family knew about that one so that was a big surprise.
We are all different and I hope you are easily diagnosed and treated. I know it gets real old. Have you checked on heavy metals? I'm afraid to try chelating with all the symptoms I have going on now. Good Luck at Hopkins.
Posts: 383 | From Ar | Registered: May 2007
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Shosty
Unregistered
posted
You probably do have mold problems, from your story, but if you go back to the site with the vision test and read it all, I think you will see that the neurotoxin test also includes neurotoxins from Lyme as one possible cause of a positive score.
IP: Logged |
posted
[[QUOTE]Originally posted by Keebler: [QB] -
You may not have lyme, but if you do you REALLY need to know BEFORE seeing an endocrinologist.
I definitely had Lyme, synovial fluid tests from my knees showed 8 positive bands on the Western blot.
Or be sure your endocrinologist is LL or it could be a huge waste of time and if any sort of steroids are prescribed (or even a challenge test) . . . if lyme is present, lyme can blossom.
My lyme doc warned me not to expect any miracles from the endo, and that almost none of them are LL. I'm already on hydrocortisone for almost a year, 20 mgs right now, since my cortisol levels dropped to zero when I was having my severe hive and chronic fatigue stage. When I slowly ramped down from 15 mg to zero from Jan to June this year, my health got significantly worse. I know that hydrocortisone can really mess up a lot of things, but since my body isn't producing any cortisol I can't live without it right now. And I need Adderall XR just to keep awake and alert during the day. Tried taking Provigil for a while, but it didn't do a damn thing for my sleepiness and inability to wake up in the morning.
Posts: 16 | From maryland | Registered: Jul 2008
| IP: Logged |
quote:Originally posted by Shosty: You probably do have mold problems, from your story, but if you go back to the site with the vision test and read it all, I think you will see that the neurotoxin test also includes neurotoxins from Lyme as one possible cause of a positive score.
Looks like I'm suffering from about everything you could possibly suffer from -- mold exposure, candida, lyme, and toxic chemical exposure, all at once. Makes treatment decisions a *****! Geez, to think of all of the toxic chemical exposure alone I've gone thru since my mid 20's I can't believe I still have any functioning brain cells!
I can't believe I was as healthy as I was for so long, and I'll always wonder whether these toxins had anything to do with the slow breakdown of my joints and tendons -- it's like I went from being a completely healthy 37 year old to an 80 year old man in 9 short years
And yes, I did note that the VCS test can show positive for lyme infection -- the whole point of the test is to show that you are suffering from some kind of neurotoxin, and I unfortunately have plenty of options to choose from ;-)
Posts: 16 | From maryland | Registered: Jul 2008
| IP: Logged |
quote:Originally posted by TerryK: Borrelia toxins can be similar to mycotoxins for some of us. That is, we do not make enough antibodies to remove them all from our bodies. You can find out if you are one by having the HLA testing.
***"HLA testing"? Whazzat? And you're right, the similarity between lyme and mycotoxin symptoms makes diagnosis and treatment pretty difficult.
You may find that with your exposures to mold and borrelia, you may become really really sick when you start cholestyramine. Many lyme patients must take actos along with cholestyramine so that they can tolerate the cholestyramine. Actos downregulates some of the hormones that get stirred up with cholestyramine.
*** I definitely plan on taking Actos for a week or two in advance of CSM. I herx really badly, very easily, I need to take anything I can to relieve it.
Search here at lymenet for more info. Given your exposure, you will want to learn as much as possible about how to deal with mycotoxins. It is not well understood and may even be denied by mainstream medicine so don't expect to get help from most doctors.
and will see what my mold test results show, then with any luck we can finally find out what I'm dealing with. I just bought two more mold test kits, waiting on the results until I test the basement and living room again. If the basement still shows positive....it's unfinished, just concrete and insulation...dunno what else I could do down there.
Posts: 16 | From maryland | Registered: Jul 2008
| IP: Logged |
quote:Originally posted by zil: I became disabled in 1999 and had been complaining of just not feeling well and fatigue for over 5 yrs at that time. I just kept going downhill until 1999.
I have also found I have obstructive sleep apnea and now wear c-pap and they found a genetic disease called hemochromotosis. No one in my family knew about that one so that was a big surprise.
We are all different and I hope you are easily diagnosed and treated. I know it gets real old. Have you checked on heavy metals? I'm afraid to try chelating with all the symptoms I have going on now. Good Luck at Hopkins.
Yikes! You sound like a gal I used to work with, but never really knew. We've been online penpals for over a year now, she was as bad as you sound. I'm surprised she's still alive, to be honest (no sleep for 3 straight weeks?!?). I FINALLY got her to go to see my Lyme doc about 3 months ago, and at times she is now feeling good enough to drive her car and ride her bike. She still has a long, long way to go, but you hang in there, ok? She'd almost given up, her religion was the only thing keeping her alive. And I know trying to differentiate between herxing and real symptoms is a royal PITA.
Posts: 16 | From maryland | Registered: Jul 2008
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