posted
I am unable to think straight because of whatever condition I have. I have had a Lyme test through Igenex done and I have tested positive for 1 band of Lyme (++), but the Igenex and CDC standards say I don't have it.
I have tested positive for aflatoxin, trichothecenes, and ochratoxins, but am unsure if these are normal levels in humans (since food, air, etc. all contain mycotoxins) and if these are causing my symptoms.
My LLMD wants to treat my mold problem and lyme problem at the same time, even though he doesn't think I have lyme.
The treatment is $15,000 and he said I can be better in a matter of a few weeks. Since this is not through insurance I cannot afford it. He suggested taking out a loan because this is my health. While this is true, and I would sell a kidney and a lung if that's what it took to be healthy (and think straight!) again, WITHOUT THE GUARANTEE THAT THIS WILL WORK and that mold + lyme is causing all of my symptoms, I cannot afford to spend the remaining savings I have on one treatment when I can possibly try many more.
Has anyone heard of treating mold + lyme with IV antifungals, antibiotics, and causing a HYPOGLYCEMIA reaction in the cells so they can absorb these drugs better in order to rid my body of the fungus/mold/bacteria?
I don't have the mental stamina to fight for myself anymore. I am VERY close to suicide, and my bull**** meter doesn't exist. I want to make sure I'm not being taken advantage of, but I won't even know that until my IV treatment works, if it ever does.
Thank you! I live near Chicago, IL and may go get a second opinion, if I have the energy to get out of bed and actually make that happen!
My symptoms are: extreme fatigue and exhaustion brain fog dull sensory perception feel as if I'm on drugs and intoxicated all the time food makes symptoms worse fasting for 48 hours clears all symptoms antihistamines and food allergy avoidance does not help Z-pack has helped in the past but doesn't seem to work long term (taken orally @ 250mg/daily).
My IGeneX test is as follows:
IGM **31 IND **39 IND **41 ++ 58 + 66 + 83-93 IND
IGG **31 IND **41 ++
I will update the mold testing when I find it!
Thank you!
[ 03-27-2013, 05:43 PM: Message edited by: What is wrong with me ]
Posts: 3 | From Northern Illinois | Registered: Mar 2013
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
You are thinking more clearly than you realize. Give yourself some credit!
DO NOT take out a loan for any unproven treatment. I can't believe a doctor (??!!!!) would ask that of you.
Then again, I had a doc who told everyone to buy her expensive supplements with the line, "you are worth it." What are we, walking (barely!) cash machines?!
You can have Lyme with only one starred band. In fact, it's common, which makes this doc seem even more sketchy.
Which band was ++? On IgG or IgM? I had a negative Igenex test and I was loaded with Lyme. I had no antibodies for the test to find. Scary.
As for mold exposure, yes, that can also cause severe symptoms.
Honestly, the best way to figure out what is causing your symptoms is to begin treatment and see what either makes you feel better (Yay!) or worse (strangely, also Yay! as we get worse before better). Read about die-off/herxing.
Your symptoms do point to both Lyme and mold exposure, and also to co-infections of Lyme (other tick-borne infections). If you have Lyme, odds are you also have Bartonella and Babesia, at the very least. Lyme is really one big party.
I had all of those symptoms with Babesia. The profound fatigue, brain fog, drunk feeling, and food intolerances are very typical of Babesia. I had several months of remission during a phase when I ate very, very little. I was not on any treatment. I just had no appetite so I didn't eat much. All of my symptoms resolved.
The food aspect can be allergies or intolerances, but for me the issue seemed to be related to poor blood glucose regulation. Now I wonder if it's more than that, as many patients are on fat restricted diets as treatment for Protomyxzoa Rheumatica and reporting dramatic improvements.
TMI for now, as you are asking about your next step.
1. Give this doc the heave-ho. Nobody is cured of these illnesses in a matter of weeks. ANY good Lyme or environmental medicine doc would know this.
And the recommended treatment gives me pause. I've heard of this, but I can't remember the context. It doesn't sound safe, and it's not a standard treatment within Lyme circles.
2. Head over to Seeking a Doctor and post for a LLMD or LLND in your area. Go to a highly recommended one. Get that second opinion.
3. Take a deep breath. You can recover your health. It takes most of us several years (another reason to hang on to your money!), but we get there.
4. Stick around and do some reading. You'll know more than most doctors in no time! Daunting, yes, but to your benefit.
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Do not give that doctor a dime.Request a reputable referral to a LLMD in seeking a doctor. This one sounds like a quack.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
There are no LLMDs in Chicago, so this doctor you are seeing is probably (more than likely!) NOT Lyme-literate. You need to be evaluated and treated by a LLMD.
PM sent with information.
Posts: 8981 | From Illinois | Registered: May 2006
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Even the Mold Expert Dr in Md doesn't do IV antifungal, etc treatments to induce a hypoglycemia reaction...that's just craziness...run from that Dr!
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Anytime a patient is very uncomfortable with a treatment suggested and not sure of what they have, they should not stay with the doc. People should be on board and an active participant in their treatments. This is not to say the patient is always right though. Just that they must educate themselves and not to be constantly questioning the doc.
If you have been sick a long time, treatment will take a long time. So, a few weeks is not going to do it.
We don't really know your history well enough to say much about what you should do. Have you been checked for coinfections? If you can afford it, the new culture test for lyme might be considered. It finds most (not all) cases of lyme.
Posts: 2888 | From USA | Registered: Mar 2004
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
The fact that fasting stops the symptoms is very puzzling. This does not fit with what I know about tickborne infections.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Mold illness can cause all of the same symptoms as Lyme and Babesia. The depression you are experiencing can be from inflammation of your brain caused by mycotoxins (Lyme, mold or both).
I would do an ERMI test on your house. The cheapest is from EMSL laboratories. If you have mold (sure sounds like you do) remediate or move to a safe environment.
Then you could start Cholestrymine to get the toxins out of your body. What if you told that doc that you just wanted to try a less aggressive treatment to see if you respond?
If it's mold and not Lyme you will probably feel better pretty quickly. Also if you do the Cholesrymine and have a massive inflammatory response you are probably dealing with Lyme too.
Posts: 845 | From Northeast | Registered: May 2011
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posted
I am amazed at the fast responses here. Thank you to everyone.
I'm running from that Dr. I don't feel right with him and if my bull**** meter is still accurate, even though I am sick, it's telling me that he has no clue as to what he's talking about.
I'm going to buy some Cholestyramine and schedule an appointment with the Dr. **edited out Dr's website address**, even though it is over 3 hours away, while continuing to look for a good Dr. that is closer than out of state.
I'll keep everyone updated with progress. I do know that in the past when I had sinus infections, Zithromax worked wonderfully, but nothing else seemed to help. Does Zithromax help with lyme and/or co-infections, and would the traditional Z-pack show relief in symptoms that return after the medication is stopped?
posted
I have updated the original post with the lab tests I have for Lyme.
Posts: 3 | From Northern Illinois | Registered: Mar 2013
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Almost every lyme literate Dr. would consider that a positive lyme test. Zithromax will help some but not as a single therapy (monotherapy) you'll need other antibiotics with it. Most with lyme have Bartonella and/or Babesia.
posted
I read that one can go somewhere else where there is no mold for some days , and if one gets better then probably there is mold in the house where one lives.
Mold makes lyme much worse.
Posts: 366 | From Europe | Registered: Nov 2008
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
This bit of news seems applicable:
"The groundbreaking law requires patients to be notified that a negative Lyme test doesn't necessarily mean they don't have Lyme disease."
"I read that one can go somewhere else where there is no mold for some days , and if one gets better then probably there is mold in the house where one lives."
Leaving the the house may help with some mold issues, but not all.
At the last ILADS conference, Dr. N said you could be sick for even 20 years after leaving a mold-infested building because some people actually lack the capability of removing mold from their bodies. It just stays in there as a biotoxin.
posted
you may need 300 mg omnicef with zithromax , this combo has finally broken my evening fevers, last symptoms plus sore elbow.
Posts: 532 | From Texas | Registered: Oct 2004
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Here are my notes from the 2012 Lyme Conference, talking very simply about folks who cannot handle mold. It is a condition called Mold Toxicity. Hope these notes are easier to understand.
Dr. S 101: An Explanation of the Treatment Protocols of Neurotoxin Illness by Dr. S (Mold Toxicity)
Presented at 2012 ILADS Conference, Nov. 3, 2012
Dr. Neil Nathan
He prepared this presentation in conjunction with Dr. S because so many people have commented that they cannot understand Dr. S's presentation. So, this is the presentation for "dummies."
25% of the population cannot process mold toxin. This is the definition of mold toxicity.
Not all molds are toxic. If you test your home with mold plates, the lab that analyzes them will separate out the non-toxic molds for you.
Mold is a sensitizer. So is lyme disease. They both make people hyper-sensitive to everything.
For example, there are people with electromagnetic sensitivities. These people can't think in the presence of an electric clock, for example. Tests were done that showed their brain waves go from normal (thinking) to the delta wave as an electric clock approached their head.
Delta waves are basically when "the lights are on, but nobody is at home."
Smart meters and many other electrical devices make these people unable to think.
Mold symptoms are similar to lyme disease symptoms. He discussed a few symptoms that are unique to mold. These include:
lightning bolt pains, profound nausea and vomiting (possibly projectile), weird paresthesias (that most doctors would say are impossible since "there are no nerves there"), and sensitivity to static shocks.
People with mold toxicity cannot make antibodies to mold toxins, so they stay toxic. The toxins recirculate, even if they move out of the moldy environment.
Mycoplasma and chlamydia also make these toxins.
In those with mold toxicity, the mold makes fat cells produce a flood of cytokines (causing inflammation), and people lose the ability to know when they are satiated (stomach is full). This effect is known as leptin resistance. So, they can gain 40 pounds in a year.
Also, these people cannot make enough MSH, so their endocrine system collapses. They will have many hormone imbalances (adrenal, sex hormones, etc.)
Also, the person cannot make VIPs.
Toxins can disrupt antibody formation. Therefore, these patients cannot heal. Their inflammation cannot turn off. They will have high C4a and C3a.
The mold toxin cannot leave the body. Dr. S recommends using cholestyramine to remove it. Cholestyramine is a binder.
Also, high cytokines stop production of VEGF, so the patient will have post-exertional malaise. Without VEGF, the person cannot increase blood flow to cells when needed. That is what causes the post-exertional malaise that lasts for days after exertion.
Being low on MSH means that the body can't stop reacting to pain. (A normal person's body stops reacting to pain at some point.) So, these mold toxicity patients continually have pain. They are often diagnosed with fibromyalgia because of this symptom.
Being low on MSH also means that the person will urinate more, sweat more, and therefore have a small layer of salt on their skin. This is likely why they so strongly react to static electric shock. The salt makes them an excellent conductor of static electricity.
MRSA is a subset of MARCONS. MARCONS itself causes no symptoms, but it massively interferes with MSH. It causes more cytokines to be produced.
Culture the sinuses to look for MARCONS. Treat MARCONS with a nasal spray called BEG Spray. He uses the BEG spray and rifampin.
Also, autoimmune conditions are increased with mold toxicity. The symptoms can look like MS.
A VIP deficiency will present as air hunger. Treat this with the nasal spray. It works at the very first dose.
Next, he discussed the Visual Contrast Test. This test is a sheet of paper with various special types of lines drawn on it. It is held a certain distance from the patient to see if the patient can see all of the lines. This is a test for mold, lyme, and mercury toxicity.
(These toxins affect retinal function. So, that is how the test works. It is testing retinal function.)
Treatment of Mold Toxicity
Recommends the use of cholestyramine and sometimes also adds Actos. The cholestyramine should be obtained from a compounding pharmacy so that there is no sugar or NutraSweet in it. Welchol is weaker and is better tolerated. So, it can also be used if necessary.
The treatment mobilizes the toxins. Therefore, it produces a herx reaction.
Start with 1/4 scoop of cholestyramine per day and then increase. Don't increase dose too fast. You must take the cholestyramine at least 2 hours away from meds. He recommends taking it about 1/2 hour before lunch because the least meds are generally taken at lunch.
If the patient's leptin level is good, then you can also add Actos to the treatment. Actos can cause hypoglycemia and swelling. It works 15-20% of the time, but is well worth a try because if it works, it works within a week.
DHEA is low in 99% of his patients. Adding DHEA makes people feel better in a few weeks.
Zithromax 250-500 mg once or twice per week is a good biofilm buster. It liquifies body secretions and biofilm.
He gives his patients Melatonin so that they can sleep.
If the patient has pure mold toxicity and nothing else, Zocar 80 mg per day is the treatment. Take CoQ10 along with it.
If a person feels better when they get to an altitude of over 7,500 feet, that is a clue that their ? is low. (Sorry, I missed the word here.) Going to high altitudes make these folks feel better, so that is the clue to this abnormality.
ERMI test kits are available on line to test your home for mold. Dr. S has a scoring system for the ERMI test results.
Remediation of your home may not work. It is very expensive to remediate, so he wants mold patients to know this in advance.
Final word: mold toxicity is treatable.
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