Hopefully your doctors can work together on this. You can herx pretty badly on treatment for fungal problems, as well as for Lyme and Babesia, so go slow and easy.

Have you looked into the Dr. Ritchie Shoemaker protocol (I think he calls it SBS--Sick Building Syndrome)? His website is: www.chronicneurotoxins.com

quote:

---

Originally posted by riversinger:
Yep, I have both, have postive lab tests for both, and respond to treatment for both. Tick borne illnesses and fungal exposures and/or infections can suppress the immune system, making you more vulnerable to other issues.

Hopefully your doctors can work together on this. You can herx pretty badly on treatment for fungal problems, as well as for Lyme and Babesia, so go slow and easy.

---

River, what test did you have for Mycotoxins and what was your treatment? I suffer from both and my Lyme symptmoms are exacerbated by Mycotoxins.

For mycotoxins, I had an IgG antibody panel for molds at Allos Labs. This was a couple of years ago, and I think they may not be doing the testing anymore, but others do. Maybe Immunosciences?

Anyway, I came out off the charts reactive to ten different molds. For me, Candida was the least problematic.

Based on my symptoms, my exposure, and my tests, my doctors felt I had an actual infection, not just a reaction to the mycotoxins. Treatment is not fun!

First and most important is avoidance every way possible. Clean up any exposure in your home, avoid other areas that are moldy. I now use an air filter constantly to try and keep air levels low.

You need to go on a no mold diet for long enough to give your immune system enough time to slow down the reaction to the mold bodies.

The no mold diet is much more strict than an anti candida diet. It is critical though, because as long as you are being exposed to molds, your body will keep over reacting.

Last, if an infection is suspected, long term antifungal therapy, targeted at the kind and location of the infection may be needed. I was on Sporanox for 8 months to treat a lung and sinus infection.

I was unable to tolerate the cholestyramine, and suspect it would not have helped an active infection. I think that is the hole in Dr. S's theory. With both Lyme and Molds, he targets neurotoxins, but not the live organism. He is correct, that even the dead organism can cause symptoms, but I don't see how the CSM is supposed to remove active infection.

If you want to see a paper on which my treatment was based, I'll hunt it down and post it.

I still have to be careful of mold exposures, and am a fanatic about water leaks in my house. My worst symptoms in my lungs are clear now, but I still have some trouble in my sinuses which may be ongoing mold issues.

I'd love to find something that worked on an ongoing basis. I may have to do another run of Sporanox, but don't want to take it while I am on Mepron. Just too hard on the liver.

I would love to hear what other doctors suggest for this. I can't do Dr. R.S.s protocol. I'm hopeful that as my immune system recovers through treatment of other infections, I will have less vulenerability to the mold issues.

For mycotoxins, I had an IgG antibody panel for molds at Allos Labs. This was a couple of years ago, and I think they may not be doing the testing anymore, but others do. Maybe Immunosciences?

Anyway, I came out off the charts reactive to ten different molds. For me, Candida was the least problematic.

Based on my symptoms, my exposure, and my tests, my doctors felt I had an actual infection, not just a reaction to the mycotoxins. Treatment is not fun!

First and most important is avoidance every way possible. Clean up any exposure in your home, avoid other areas that are moldy. I now use an air filter constantly to try and keep air levels low.

You need to go on a no mold diet for long enough to give your immune system enough time to slow down the reaction to the mold bodies.

The no mold diet is much more strict than an anti candida diet. It is critical though, because as long as you are being exposed to molds, your body will keep over reacting.

Last, if an infection is suspected, long term antifungal therapy, targeted at the kind and location of the infection may be needed. I was on Sporanox for 8 months to treat a lung and sinus infection.

I was unable to tolerate the cholestyramine, and suspect it would not have helped an active infection. I think that is the hole in Dr. S's theory. With both Lyme and Molds, he targets neurotoxins, but not the live organism. He is correct, that even the dead organism can cause symptoms, but I don't see how the CSM is supposed to remove active infection.

If you want to see a paper on which my treatment was based, I'll hunt it down and post it.

I still have to be careful of mold exposures, and am a fanatic about water leaks in my house. My worst symptoms in my lungs are clear now, but I still have some trouble in my sinuses which may be ongoing mold issues.

I'd love to find something that worked on an ongoing basis. I may have to do another run of Sporanox, but don't want to take it while I am on Mepron. Just too hard on the liver.

I would love to hear what other doctors suggest for this. I can't do Dr. R.S.s protocol. I'm hopeful that as my immune system recovers through treatment of other infections, I will have less vulenerability to the mold issues.

For mycotoxins, I had an IgG antibody panel for molds at Allos Labs. This was a couple of years ago, and I think they may not be doing the testing anymore, but others do. Maybe Immunosciences?

Anyway, I came out off the charts reactive to ten different molds. For me, Candida was the least problematic.

Based on my symptoms, my exposure, and my tests, my doctors felt I had an actual infection, not just a reaction to the mycotoxins. Treatment is not fun!

First and most important is avoidance every way possible. Clean up any exposure in your home, avoid other areas that are moldy. I now use an air filter constantly to try and keep air levels low.

You need to go on a no mold diet for long enough to give your immune system enough time to slow down the reaction to the mold bodies.

The no mold diet is much more strict than an anti candida diet. It is critical though, because as long as you are being exposed to molds, your body will keep over reacting.

Last, if an infection is suspected, long term antifungal therapy, targeted at the kind and location of the infection may be needed. I was on Sporanox for 8 months to treat a lung and sinus infection.

I was unable to tolerate the cholestyramine, and suspect it would not have helped an active infection. I think that is the hole in Dr. S's theory. With both Lyme and Molds, he targets neurotoxins, but not the live organism. He is correct, that even the dead organism can cause symptoms, but I don't see how the CSM is supposed to remove active infection.

If you want to see a paper on which my treatment was based, I'll hunt it down and post it.

I still have to be careful of mold exposures, and am a fanatic about water leaks in my house. My worst symptoms in my lungs are clear now, but I still have some trouble in my sinuses which may be ongoing mold issues.

I'd love to find something that worked on an ongoing basis. I may have to do another run of Sporanox, but don't want to take it while I am on Mepron. Just too hard on the liver.

I would love to hear what other doctors suggest for this. I can't do Dr. R.S.s protocol. I'm hopeful that as my immune system recovers through treatment of other infections, I will have less vulenerability to the mold issues.

I react to molds rather dramatically...had a polyp in my mAxil sinus removed...it was the size of my thumb and was covered in mold.

What I am curios about....does anyone know the name of the nasal spray for mold/candida?

My sensitivities to mold have dropped off this year since I started rifing (again), chelating metals 2 weeks ago-using Nutri-DMSA, and garlic cloves....however my moutn and throat are coated with thrush...painful thrush.

So....I believe that one perpetuates the other.

As I said...I started rifing again...and chelating metals...when I chelated the metals...I could feel them actually come off of my nerves....here's the dilemna with chelating metals.

If you have alot of metals....the molds and candida will actually attach to them. Why? They feed off of the metals. So when you remove the metals the mold and candida are left looking for something else...henceforth the fact that you to take something for the mold/candida.

I am curious about the "mold diet" what is this?

Mold Free Diet

This is an article on how molds can impact health, by Vincent Marinkovich.
Fungal Hypersensitivity

Lymelighter, I'm not sure about the filters. I originally had a Honeywell Hepa that I ran 24 hours a day. It sounded like an airplane in my room, and really only kept one room clean, but made a noticeable difference.

It burnt out after six months of that kind of constant use. My doctor recommended an Airsource, which combines ionization and ultraviolet.

I have mixed feelings about it. I don't think it is nearly as good at removing particles from the air. I also can't run it in a completely closed room, because of the ozone.

However, it makes a difference in a much larger space than the Honeywell (covers 1000 sq ft), is not noisy, does not require filter chamges, and seems to help with chemical issues, like paint, etc, which are also a problem for me.

I wish they could figure out a Hepa type that wasn't so noisy and ongoingly expensive. If you find something good, I'd love to know about it.

Riversinger -- What exactly was your treatment for mycotoxins and how was it adapted for LD? What were your symptoms? Please post your paper. I, too, was treated for about six months for the mycotoxins by Dr. S (and also read "Desperation Medicine) (cholestyramine to remove the mycotoxins and ABX to eradicate the CoagNeg Staph nasal colonization). I improved after six months, then relapsed in the summer and then he just dropped me. He has a certain theory that certain genotypes, once exposed to toxins, are refractory to a chronic fatiguing illness, i.e. -- that's it, you're cooked was his basic thought conveyed to me rather bluntly. He dismissed the possibility that I had lyme because he found my cognitive ability was too good. I found that rather unscientific as many of the postings here are from people whose cognitive abilities are clearly very good.
Anyway, I moved on to a Dr. C in Houston,TX (an immunoligist and toxicologist), who tested me extensively using Immunosciences Lab in CA. I had off the chart antibody levels for over 8 different mycotoxins, as well as elevated mercury and ehtylene oxide. He put me on two months of Sporanox -- I had no reaction or improvement with the Sporanox. He now wants me to have 12 weeks of Gamunex -- IVIG -- my immune system is way out of balance and I have IgM and IgG sub 4, as well as T-cell and NK cell deficiencies. His diet recommendation was simply eat organic, whole foods and drink green tea. He said I had to get a local doctor (I live in NJ) to actually order the IVIG -- no luck on that score, so far. Being from NJ, having had a rash years ago I asked him whether lyme could cause similar immunosuppression. He said, "No. Lyme is an infection -- that's different." What???? I went to an LLMD, Dr. C in Mt Kisco, NY -- I tested negative on the ELISA and only has two bands on the Western Blot for Lyme. I tested positive for an old infection of Babesiosis, but negative for current. He's treating me anyway. So far, I've been on one month of Amox and now am taking Mepron and Zith, feeling ever so worse. It seems I am herxing on ABX, but never did on Sporonox. Also, I never really had lung or sinus problems, although Dr. C said my abdominal problems could have been caused by a fungal infection.I have classic lyme symptoms and wonder what's been caused by lyme/babs and what's been caused by the mycotoxins. In the end, most symptoms are actally caused by how our immune system is reacting to any toxin. Dr. C in TX seems not to be well informed about lyme and Dr. C in NY doesn't seem to know much about mycotoxins. I don't think I'd go back to Dr. S. How does one effectively treat both? IVIG seems to be a promising treament for both -- the trick is getting it. I have concerns about taking ABX and sporanox at the same time -- I've read you shouldn't for reasons in addition to liver concerns. Did you see Dr. Marinkovich? Could you e-mail me the name of your doctor or doctors who treated both? [email protected]

janet thomas -- my ELISA was neg for lyme. WB - only 2 bands and tested positive for "old babesia infection"; neg for current. Dr. C in NY is treating me as if I have both lyme and babesiosis. I noticed, you, too are from the wonderful "Garden State" (garden of ticks and mold). Are you seeing a LLMD in NJ? Can you recommend him/her?

Troutscout -- I, too, chelated for mercury after I had my remaining amalgams removed, using DMSA. While I do believe it's a good thing to do, I had no improvement in my symptoms. I use the IQ air purifier (HEPA)-- recommended by the mold specialtist we used to check at our house. It cost over $700 but is top of the line. I've read that the ozone emitted by the ionic purifiers can be very damaging to your lungs.

My I turned up very high readings on 3 types of mold. Although my tests were run at Quest.

20 days of 150mg Diflucan turned me into a new person that requires only a Zyrtec each day. I was the sinus infection queen in my former life.

I still use a humidifier in the winter (because, hey, I gotta work and love my job), since the humidity in our lovely building typically ranges in the 15% in winter, and have 2 air cleaners next to my desk.

While trying to piece together why I would get so sick when I went to work, while being fine at home, I recall reading some research that said that mold exposure that typically would not affect persons with

healthy immune systems could cause immuno-compromised persons to become drastically sick. They did tests have people inhale mold... Sorry, but was so long ago, I can't recall where it was.

Treat the lyme and babesia (since you obviously have it if you react to Mepron), stay away from things like dairy, cheese, mushrooms, vinegar related products, and try taking antifungals now that you're on antibiotics. It will resolve, but it's no walk in the park.

And if you want a GREAT LLMD in NJ, email me. She put me back together, and I had Lyme for 10 years (and Bart for almost a year).

I have Bb, Bart, HME, Babs (treated and gone, I hope) mycoplasma fermentens, mycoplasma pneuminae and now I've found out that I have the HLA DR genetic makeup that makes me part of the 25% of us that can't flush toxins. I also had IgG and IgM antibodies to something mold oriented. Not actually mold allergy tests though. My MSH is 8 I think. I don't have the tests here with me.

My dx is now for tick born diseases and mycotoxin poisoning.

I've been reading about air purifiers on different forums and many say the Ionic Breeze is useless. I've had one of the original Ionic Breeze's for a long time now and I love it.

I just traded it in for 2 of the new Professional GP series Ionic Breeze. I got one for my home (to replace my old one) and one for my office. I just did this today, so I can't tell you if it works or not. GP stands for Germicidal Protection which means it uses UV to kill mold and bacteria.

My LLMD told me I had to get a purifier with UV Germincidal Protection. She also told me that I should wear a tuberculosis rated hospital mask while at work. She's the one who figured out that I have mold problems and that my workplace is the mold culprit.

I plan to get a Hepa filter to run in conjuction with the Ionic Breeze. I have also seen that the IQ series is one of the most recommended.

Mold is a particulate so most filters should pick it up.

I know I'll never get my work to fix the problems so I'm going to try this route.

I am also taking CSM. I can't take any antibiotics right now or my heart goes nuts. LLMD says that I'm too toxic so can't handle any more die off.

I feel a lot better on CSM at least. Antibiotics were making me feel HORRIBLE all the time.

My other Lyme Literate PCP told me that I *have* to take antibiotics and rx'd 250mg zithromax once a day. I could only do it for 2 days and then my heart got really messed up for 3 weeks and this time never got fully right again.

My point there is that you can take abx and CSM together. I don't know about the antifungals though.

Good Luck and keep on posting,

Well, first of all, nobody else knows how much we compensate so that people think we aren't cognitively impacted. And second, everyone is impacted differently. My Lyme western blots were CDC positive.

First, however, I went through several months of treatment for the mold. I tried the CSM, but had severe hypoglycemic reactions, and just couldn't tolerate it.

After my doctor consulted with Dr. Marinkovich, he put me on the mold free diet, and I also used a compounded Nizoral nasal spray, and Sporanox orally. I also had my landlord clean up the mold source, and used the filter religiously.

As far as symptoms, its hard to sort everything out, but here is what seemed mold related. Asthma, sinus infections, facial pain, neck pain, daily fevers, rashes, flu like aches and pain.

When I started the Sporanox, all of these things escalated tremendously for several weeks, then slowly subsided. If you read the paper by Dr. Marinkovich, at the link above, you will see that it only makes sense to herx if you have an actual infection.

It is possible, however, to have toxic or allergic reactions to molds without being infected. The infections are often in areas where there is previous injury, and almost always the mucous membranes or the skin. The gut is definitely an area that can be affected.

several months into my treatment on Sporanox I was diagnosed with Lyme and started antibiotics. I took sporanox and doxycycline for many months at the same time. I'm sure there are some antibiotics that should not be taken with some antifungals. You would have to check individual contraindications.

Also, different antifungals are effective for different fungal infections, and will accumulate in different parts of the body. Sporanox was good for me because it is effective against aspergillosis, which I had, and accumulates in the skin and mucous membranes, where I seem to be most infected.

From what I hear, Diflucan may be better for gut infections. It also crosses the blood brain barrier better.

Antifungals are hard on the liver, and you have to keep an eye on LFTs. Also, after I had been on sporanox at the regular 200mg a day dose for about two months, we cut the dose down to 50mg a day.

Marinkovich told my doctor that you just have to keep some level of the drug in the blood to catch any spores that begin growth, but it doesn't have to be a lot. That way you have less chance of trouble from the drug.

I'll send you my doctor's name privately, but I'm out here on the west coat, so don't know if it will be helpful for you. I think, though, that you are far from the only one with this combo of problems, so hopefully you can find a good doctor close by.

How did you test for DR HLA genetic makeup?

I am curious if I have this problem also.

I too have mycotoxins seen in my blood and am on Amphoteric B Capsules for the gut.

The number of these things that we are dealing with along with our genetic makeup probably determins the severity of the symptoms and the length of time we have to deal with them. Most likely alot of these elements effect our DNA and the predispositions are passed from one generation to the next.

It is as important to identify the Lyme as it is to identify the mycotoxins or parasites that live in our body. The reality is that as time has passed our bodies have been exposed to so much more toxins that our immune systems are literally shutting down. Most of this is man made some of it is the evolutionary process that man has influenced.

From my prospective no two treatment protocols seem to produce repeatable results, the variables that we all face could be great, or we have yet to determine that one thing that is eluding us all.

It appears to me that the people that have the most sucess are the ones that have followed a methodical approach to destroying each indivicual toxic thing that is in their body. Some of this treatment involves antibiotics, some does not.

It would make sense to me to destroy the easy things first, as well as restore good nutritional habits. where things get difficult is in dealing with the hybrib elements that we are facing. Bb/Mycoplasma might be one of those things, The reality is that for the most part we have done this ourselves.

We have polluted so much around us, that we have set ourselves up for this. Not even taking into account what our government has done, we would probably all stiil be struggling. It is the natural progression of human life we are seeing at its worse.

Ticktoxic,
Yes, many nuts are moldy. The list I linked to isn't the exact one I followed, just the closest I could find. Many grains also have the potential to be moldy, depending on how they were dried.

hwlatin,
I think you hit the nail on the head. Each person's path to healing is going to be as individual as their path to illness. Hopefully, however, we can learn from each other along the way.

Yes, I get vertigo from mold. I was out of the office last Wed because of it.

I want to share the few links that I've found on mold/sick buildings that I have found.

If you want to learn about the blood tests that Dr. S in Maryland uses, go to:
http://www.moldwarriors.com

Some of those are the tests that my LLMD ordered for me.

If you want to learn more about treating buildings that may be contaminated and more about mold toxins, go to:
http://www.personalconsult.com

I have also gotten on a list that is very active in yahoo groups. Go to http:/www.yahoogroups.com and search for SickBuildings.

This is all the info I've found so far. I hope it helps.

He does have a new book out now, Mold Warriors. Perhaps he discusses this further.

Corgilla -- Sounds like you're seeing Dr. S. in Maryland -- yes? I was treated by him for about 6 months. He told me that I too had the HLA DR that means I don't flush toxins -- do you know of any other MD that accepts this? When I tell other doctors about this -- they look at me like I'm crazy.

Starphoenix - What tests has Dr. S run on you to determine if you had an active fungal infection? TBD? He never ran any such tests for me. He treated me for mold based on my symptoms alone -- although sure enough, our houase turned out to have mold big time and another MD ran very expense immune tests to determine that I indeed was
exposed to significant amounts of mold and mycotoxins.

Did you list your e-mail correctly? I tried contacting you but it bounced back.

I'm wondering if you could follow up with Dr. S' office; I would hope he would have better advice than "you're cooked." Or if he didn't then, he might now, if he's still researching and improving his protocol.

Of course docs look at you like you're crazy, they're clueless even though this issue is about as critical as it gets. If your body can't get rid of toxins, how can you get better? They can't deal with this question, they just prescribe more toxins, as anti-depressants or whatever.

I'm curious as to how this HLA genotype thing relates to Multiple Chemical Sensitivity, if it does. In the thread at: http://flash.lymenet.org/ubb/Forum1/HTML/033141.html
Sue VG talks about Phenol Sulfotransferase Deficiency and Metallotheonine disorder. There seem to be things that can help detox capabilities (supplement molybdenum, sulfates like MSM), but again, I don't know if this would help someone who has the HLA genotype you describe. I wonder if Dr. S would think these things are connected or not.

I lost track of this thread and now re-found it.

Lyminie, my LLMD is in PA and she is using Dr. S' protocol. She's a member of ILADS.

Since this thread went to 2 pages, I can't go back and see what other issues I wanted to discuss so I guess that's it for now.

Feeling very chest crushy, heart palpy, veritgoey and fatiguey. I made up new names for my symptoms