Took a ambulance ride to the duck motel. Spent 6 hours at the duck motel. He said never seen any thing like it. He thinks I need a shrink! At times I do feel like I am crazy!!!!

My LLMD thnks its neurotoxins from mold. Any ideas?

Cheryl

Have you tried avoiding the moldy environment for awhile?

How do you feel when you're away from the mold. Are others who live with you affected by the mold as well?

As Foggy says, avoidance is essential, but I don't think it is the ONLY thing you can do. When I was treating mold symptoms, I also took antifungals for an extended time, and avoided molds in foods as well as the environment.

Not everybody needs to do all that, but my doctor believes some people have actual infections on top of sensitivities. Check the following paper.

Fungal Hypersensitivity; Pathophysiology, Diagnosis and Therapy

By: Doctor Vincent Marinkovich

Introduction

Molds or fungi are everywhere in nature and their wind borne seeds (spores) make up the majority of the microscopic particles in the air at anytime, even when pollen season is at its peak.

Their value to the food industry is enormous while their contributions to medicine in the form of antibiotics, vitamins and other drugs is inestimable. But they can cause trouble.

Humans in good health handle typical exposures to molds in the air, in their homes and in their workplaces without much difficulty. However, certain allergy prone individuals may have symptoms during peak mold levels that include asthma, runny nose, sneezing fits and itchy noses and throats.

In the immunologically compromised patients, a single mold spore can initiate a deadly process. Patients on chemotherapy or immune suppression imposed for organ transplantation and those with chronic diseases such as AIDS, recurrent infections, cystic fibrosis and diabetes are also at risk when exposed to molds at levels that healthy individuals can handle.

Exposure to high levels of mold can be a threat to anyone's health--as noticed in certain occupations. These conditions were given names such as farmer's lung, pigeon breeder's disease, malt workers disease, etc.

They shared common symptoms, usually involving nose, sinuses and lungs and the consequences were serious, often leading to permanent breathing disorders and death.

Over the last 30 years nonoccupational exposures have become recognized as dangerous in homes with moldy air conditioning or humidifiers, homes near composting facilities, and homes with water damage.

Exposure to high levels of fungi can be a health threat from inhalation, ingestion or skin contact involving tiny mold spores (invisible to the eye), mold toxins (mycotoxins) or mold bodies themselves.

Initial symptoms seem to be the result of inhalation, such as sore throats, hoarseness, cough and nasal congestion. With time, symptoms can progress to include headaches, fatigue, rashes, dizziness, shortness of breath, sinus infections, ear pain, muscle and joint pain, and fever.

These symptoms are the result of direct mycotoxin exposure and the effects of an over active immune system trying desperately to overcome what it perceives to be an overwhelming infection. The immune system generates antibodies to the absorbed mold materials (antigens).

These antibodies react with the antigens to form immune complexes, which is all part of the body's normal immune elimination function. When the immune clearance machinery is on overload the complexes remain in the bloodstream causing myriad symptoms, known to clinical immunologists as serum sickness, and appearing to the patient as a severe, unrelenting flu syndrome.

Exposure to certain mycotoxins can result in brain damage seen as short-term memory loss, cognitive dysfunction, inability to concentrate and "fuzzy thinking." These changes seem to be reversible, at least in part, but they can take years to resolve.

Once the patient has become hypersensitive to the mold in their environment, they have also become overly reactive to all molds in their life including those they breathe elsewhere, those they eat and those that may be colonizing their tissues.

Relief of symptoms can only come with a significant reduction in exposure including a mold free diet, avoidance of mold ridden environments and treatment of mold colonization.

Some mold colonizations are well-known such as athlete's foot, vaginal yeast infections, ringworm, excessive dandruff, toenail fungus, etc. But molds are opportunistic and can become established on any tissue that has been previously damaged.

This would include the sinuses of the patient who has had a sinus infection, the lungs of a patient with asthma, the nose of a patient with nasal congestion and the gastrointestinal tract of patients who have had chronic indigestion or abdominal discomfort.

The patient's healthy, reactive immune system can prevent the mold from invading surrounding tissues and causing infection. However, it is not able to remove the mold from the mucosal or skin surfaces. The colonization continues, the patient continues to form immune complexes with the mold antigens, the overload continues in the patient grows sicker.

Once there is significant colonization, the symptoms continue even after the patient leaves the moldy workplace, or home when the high exposures occurred.

Diagnosis

The diagnosis of fungal hypersensitivity syndrome rests on three criteria; an identified heavily contaminated source, appropriate symptoms temporally related to exposure, and high serum IgG antibody levels to molds. IgE antibodies are usually not involved and skin tests are, therefore, usually negative.

Specific IgG antibody levels to molds are helpful in supporting the diagnosis of fungal hypersensitivity. Everyone is exposed to some mold and, therefore, some antibody to mold is found in nearly everyone. But the levels are low.

Individuals exposed to heavily moldy environments make great amounts of antibody. In mold hypersensitivity patients it is common to find antibodies to molds in class three or class four categories. Occasionally a patient with significant mold problems will present class two antibody levels.

Mold antigens are highly crossed reactive, which means that an antibody response on exposure to mold A may show significant reactivity on the IgG panel test to mold B as well.

Sometimes the molds to which the patient shows highest antibody levels are not identified in an environment survey. This reflects the difficulty of getting the mold growing happily on wet sheet rock to grow on an agar culture dish.

Therapy

Therapy is based on avoidance. The contaminated environment must be remediated or abandoned, a mold free diet is very helpful, and colonization must be eliminated by the appropriate use of antifungals. The most common colonization sites are the nose, nasopharynx and esophagus.

A compounded nasal spray containing 2 percent Nizoral in saline used four times daily with thorough wetting of the nose and nasopharynx is extremely effective. For colonization of lungs or sinuses, Sporanox at 200-400 milligrams per day is useful.

For primarily gastrointestinal symptoms, miconazole or econazole in 250 mg capsules can be very effective. This is given twice daily. If Candida antibodies are highest, Candida may be the offending organism. Nystatin capsules (as 500,000 u) are helpful given one million units three times daily.

All use of antifungals can evoke a flulike Herxheimer reaction in the hypersensitive patient at the initiation of therapy. This is presumed to be due to massive die off of the colonizing fungi with an overloading release of fungal antigens and toxins onto the mucosal surface.

To prevent such flulike reactions therapy should begin at a quarter to an eighth the final dose and advanced, as tolerated, over a two to four-week period. Once therapeutic doses are achieved, treatment needs to continue for six months or more although the patient will report symptoms reduction after a few weeks.

The need for prolonged therapy is presumed to be due to the presence of fungal spores that cannot be killed until they germinate.

Conclusion

The diagnosis of fungal hypersensitivity is difficult for most physicians because mycology is not a strong subject in medical school. Most colonizations are not life-threatening and such conditions as athlete's foot and yeast vaginitis are often self treated with over-the-counter medications.

At the other extreme are the life-threatening fungal infections in the immune compromised patient, which are usually treated by oncologists with help from infectious disease specialists. In this article fungal hypersensitivity and colonization is occurring in healthy individuals who have been exposed to excessive fungal contamination in their homes or workplaces.

They experience symptoms, which are usually attributed to viruses such as an upper respiratory tract infection or the flu. As time goes by and the symptoms persist, the patient may come to realize the basic problem is heavy fungal exposure from having read about someone else's affliction in the newspaper or magazine. It now because the physician to recognize the problem and know what to do to help his/her patients.

Copyright 2002 by Vincent Marinkovich

I was treated for mold colonozation before starting Lyme treatment, and it definitely affected neural symptoms. Lyme makes you more vulnerable to everything.

Don't know if this is truly the case with cawpo, but its easy to check.

MY LLMD says some of my sx are not lyme. He has patients with slow or slurred speech, but none that can't talk at all some times. He is convinced if have neurotoxins. He gave me IV glutathione in his office in 10 minutes my sx disapperared. It was amazing. but only lasted 1/2 hour. Never had that improvement again.He said that proves I have the neurotoxins.

I just don't know what to think, when I can think. I have been treating for lyme & co-infections for 11 months, now he is adding ? about molds.

I live on a farm with horses, so of course molds in the hay and barn. My old house has a stone foundation, dirt floor that is always wet. I do not actually see any mold.

He wants me to have my house mold checked. I am researching that, not sure what is the best, money is a condideration also.

How accuarte is the IgG mold panel?

I was on IV rocephin, IV mag and IV glutathione 12/03 till 8/31/04 insurance would not pay any more. H is now discussing going back on IV.

ER doctors in past described worst episodes as tonic/clonic seizures, but regular neurologists rely on EEG's only. Steve's EEG's are either normal or slightly abnormal with slowing -- but no epilepsy spikes.

Dr. K in CT -- lyme neurologist -- called them "bizarre movement disorders caused by Lyme" based on my description of these episodes.

IV Ativan 1/2 or 1 or 1 1/2 mgs per dose will stop these episodes. Steve's whole body freezes up about 50 % of time when he has these episodes. He can't move a muscle. I call this transient quadriplegia for lack of a better name.

The IV Ativan helps his muscles relax but it sometimes takes me 10 - 15 minutes of hard effort moving his limbs to unkink everything.

Sometimes he can't talk or his teeth may chatter or his tongue may spasm (palatal myoclonus I think it is called). Other times he will make lots of strange grunting and groaning noises or talk gibberish -- not any words I can understand.

Sometimes he will recover quickly and other times he stays in bed for an hour or two -- kind of like a postictal state as seen with epilepsy.

I also use the IV glutathione daily through his PICC line and if he is actually unconscious that is the only thing I use that will actually wake him up.

Steve has been tested for mold and does show slightly elevated antibody levels. However, recently Dr K in PA (P. K. Protocol) said antibiotics would make mold symptoms worse so in Steve I think these episodes are caused by Lyme or a coinfection and not by mold.

Supposedly Lyme creates neurotoxins -- I just wish there was a test to identify these toxins. We have just started P.K. Protocol this week (IV Phosphatidylcholine followed by IV glutathione) but it is too early to tell if this will remove neurotoxins and improve symptoms. Steve tested very low on several essential fats.

The only thing which has worked to lessen the frequency of these episodes was 120 grams IV Rocephin given over about 12 or 13 weeks. Steve's symptoms improved about 25 % after IV Rocephin but quickly deteriorated on oral antibiotics.

Have first appt with Dr. C in MO in two weeks -- will let you know what he thinks.

Dr. B in Long Island, NY felt shaking episodes were caused by either Lyme or babesia. Babesia has not been adequately treated at this time due to med problems.

Steve does have pulmonary nodules and enlarged lymph nodes in his chest as seen on multiple chest CT's -- cause unknown.

He also has multiple white matter lesions in his brain as seen on multiple brain MRI's.

Needless to say I am just as confused as you are, but wanted to let you know you are not alone.

_____________________________________________
My suggestions:

1) EEG's are a waste of time and money

2) If no brain MRI then consider doing test -- insurance should pay

3) Mold test probably also a waste of money -- cost was about $1000 and insurance paid veryyy little -- through Immunosciences Lab.

4) Seizure meds probably will not help -- Steve has tried 5 or 6

5) Psychiatrist is absolutely last resort -- we went this route very reluctantly when ducks said not Parkinson's or neurological (before Lyme diagnosis) -- 15 or 20 psychiatric drugs did nothing for tremors/myoclonus/"seizure-like" episodes and caused worse depression and mood swings etc.

6) How is your G.I. function? Leaky gut and/or overgrowth of bad bacteria (Klebsiella and others) could cause elevated blood ammonia which triggered some shaking episodes with Steve.

7) If episodes continue, try to determine if there are triggers. Steve's episodes are usually triggered by eating, movement, fatigue, either waking up or going to sleep and especially sudden loud noises (the phone or a knock on the door etc.)

8) It might be time to consider switching LLMD's or at least get a 2nd opinion or ask your LLMD to consult with another LLMD

Good luck.

Bea Seibert

quote:

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Originally posted by cawpo:
I live on a farm with horses, so of course molds in the hay and barn. My old house has a stone foundation, dirt floor that is always wet. I do not actually see any mold.

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I live in California. Its almost impossible to completely avoid mold in the environment here, just like it would be where you are. Just so you know, you can not always see or smell mold, and it can still affect you.

quote:

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He wants me to have my house mold checked. I am researching that, not sure what is the best, money is a condideration also.

---

Don't bother with the air quality tests. Mold is always in the air, its impossible for it not to be. It would only be worth it if you had them look for hidden mold inside the walls or other part of the structure. If you have wet areas, you are going to have mold.

Leaks, condensation, any wet places will encourage mold growth.

[qoute]How accuarte is the IgG mold panel?[/quote]

There is controversy over it. I can only tell you that it seemed to strongly correlate with some of my symptoms. I had very high antibody levels to 10 molds. I know that my LLMD has found it is a factor for many.

I didn't have the $1000 test from Immunosciences. Mine was a $150 from Allos Labs. This doctor can tell you where and how to get the test. He is not the one who treated me, but he developed the lab test.

Vincent Marinkovich, MD
90 Middlefield Rd Suite 100
Menlo Park, CA 94025-3510
Ph: (650)327-8380
Fax: (650)327-8389

I had a remission of many symptoms while on antifungals, before taking antibiotics. I still had Lyme, so I wasn't "cured", but specific things improved. If they recur, they improve with repeated antifungals.

However, the antifungal treatment only works if you have actual colonization. It doesn't help the allergic reaction, or the hypersensitization that can occur.

For that you need avoidance.

I have found from experience that I react to molds, so in my case I don't have any doubt. whether it is the cause of your symptoms, I can't tell you. I did get enough help that I think it is worth checking out.