☼ alexjuice: About

[Barbarannamated]

Alex,

 

It sounds like your autoimmune specialist is very in tune with different auto- antibodies. I'm having trouble finding a NeuroImmunologist for my AI stuff. Maybe your guy knows someone. A relatively new field.

 

If you wouldn't mind sharing the name of your doc, please drop me a PM. I'm still trying to get a feel for what treatments make sense without becoming another pharma experiment.

 

Thanks.

B

[Karma]

Terrible day.

 

Got lab results from Dr. AI. I was reactive left and right. I have more antibodies 'out of range' elevated than any patient he's ever seen, though he's had patients with higher elevation in each particular test. I got flagged for pancreatic/islet, hepatic, testicular/ovarian, and a bunch more. He formally diagnosed me with Hashimoto's which my last integrative physician ruled out and refused to treat.

 

All this autoimmune stuff could be related to mycotoxic exposure. It likely is but may not be. I need my mycotoxicity test results from the lab. Today I got a call from that testing laboratory. Results were expected in today, as a matter of fact. Instead:

 

I learned my sample is invalid/untestable as it just arrived at the lab after being floating lost in the postal netherworld for 8 FRICKIN DAYS!!!!!!!!!!!!!!!!!!!!!!

 

So I don't know the degree of mold toxicity (if any) because there is no sample to test. How do I know what course to take without those results?

 

I can not believe this is happening.

 

EDIT: All of the autoimmune positives do not equate to formal diagnoses. I don't have diabetes for instance. I am at a much higher risk for developing it though as some autoimmune destruction is underway.

 

Hi Alex,

 

I know you were counting on those labs so that you could get a solid diagnosis and move forward with some kind of treatment and the disappoint at not getting an answer after waiting so long is painful. I've lived in the anxiety of waiting for lab results myself and I know that I would be devastated at this news. I'm so sorry.

 

But, you can't dwell on the disappointment. Nothing to do now, but take new samples and FEDEX the samples to the lab to ensure they arrive in a timely manner for testing. You need those test results to move forward with a solid plan.

 

From what I have learned, if you have Hashimoto's thyroiditis you can swing from hypo (too little thyroid hormone) to hyper (too much thyroid hormone) ... a common treatment for Hashi's is to take sufficient thyroid hormone replacement to suppress the TSH so that it no longer causes the swings between hypo and hyper. That is the treatment I used and it was a huge relief. I'm sure your doctor will know how to treat your condition.

 

Here is what I've found about doctors interpreting thyroid antibody labs ... if the lab shows antibodies, but they are in range some docs will rule out Hashi's ... what I've learned is that if you have any antibodies your thyroid has been under attack at some time and that means you have Hashi's - but not all doctors interpret the labs that way. By the nature of Hashi's it could also be that a lab run at another time shows antibodies above range and the doctor would diagnosis that as Hashi's.

 

I know that you are very troubled by the symptoms you are experiencing ... anybody would be ... but I really do think you are on to a root cause and that you have lined up a solid team to help you through this ... it is just very difficult right now because you don't feel like you are making progress.

 

How is the home search going?

 

It will get better, Alex.

 

Karma

[Altostrata]

As I understand it, those tests indicate thyroid inflammation, which can be situational, too, it can go up and down and not necessarily result in permanent hypothyroidism.

[alexjuice]

UPDATE:

 

I visited with Dr. Smiley (mold) who reran my hormones since they were so off on last run. On the thyroid, there is a disagreement between a Rx of T3 or one of T4. This is because one doctor believes high Reverse T3 is inhibiting T4 conversion to T3.

 

Dr Smiley, like Dr. Strident, before her, believes benzo drugs increase my risk of autoimmune diseases. She thinks I should aggressively taper, though she has no experience with benzos except that she claims a high incidence of benzo use among her worst mold cases.

 

I have tested with out of range antibodies which frontrun numerous, serious autoimmune diseases such as diabetes, RA, MS, Lupus & so forth. However, if I have significant mold toxicity, this may explain some of the immune irregularity. Though half a piece of gluten free cake (1st treat since May) had horrific BG results. +170 @ 1hr, +150 @ 2hr, +190 @ 3hr, 65 @ 4hr... At this point, I am functionally diabetic and only my dietary discipline keeps my numbers in check.

 

Probably also autoimmune against my testicles which explains the losses there.

 

Waiting on mold tests, still. Dr Smiley is 100% convinced mold is a factor, if not THE factor.

 

IMO, mold + psych w/d = whacked out immune response and we'll just see. I still believe in recovery.

[Barbarannamated]

Interesting about benzos and autoimmunity. I wasnt aware of that connection, but have read quite a bit about SSRIs triggering autoimmunity:

 

http://www.news-medical.net/news/2006/01/23/15510.aspx

 

Did Dr. Smiley mention that possibility? Just curious. I like to enlighten docs who still believe serotonergics to be safe. Also, I thought that once autoimmunity was triggered, it's not going to reverse with removal of the trigger, a bit like a virus. I'm not sure about that! It looks like Zoloft induced lupus antibodies/positive titre with me. I hope I'm wrong about autoimmunity!

 

I wasn't aware of your vision problems, Alex. What type of problems are you experiencing?

 

I want recovery and healing and a good life for you, Alex. I hate what's happened to me, but I hate what's happened with you even more. I'm not being very delicate with my wording and I apologize. Just trying to say that I care very much..

[alexjuice]

Karma and Alto,

 

Thanks for your words of encouragement.

 

I have no permanent place. Found a place but it didn't work out. And then had to wrangle out of the lease. Am hoping for a temporary solution soon, Living here (at a motel) is not a long term answer.

 

I am very troubled by everything. I have gotten much worse in the last month. I'm very sad about it. At the moment, actually, I can't get too enthusiastic about my prognosis. Mycotoxic poisoning is very tough to treat. It particularly affects people with weakened or disrupted immune systems. The few medical interventions are hepatoxic.

 

My vision is getting worse. My testes are shrinking.

 

In many cases the treatment, beyond the antifungal, is immune stimulating but I have to be very careful with that as my immune system is attacking me.

 

Like I said, I believe in recovery, but I am still trying to accept that it may mean some losses which makes me very sad.

 

The best thing I can do right now is poop a lot. Take binders and poop and hope to detoxify. So that's most of the plan. +Some other **** which may help like maybe some IV glutathione. It' a shot in the dark. I only believe because it'd be just too crappy to do 15 years on meds and then get irreeedmably ill just as the sun starts to shine.

 

I do appreciate your optimism though.

[alexjuice]

Interesting about benzos and autoimmunity. I wasnt aware of that connection, but have read quite a bit about SSRIs triggering autoimmunity:

 

http://www.news-medical.net/news/2006/01/23/15510.aspx

 

Did Dr. Smiley mention that possibility? Just curious. I like to enlighten docs who feel that benzos and opiates are evil and still believe serotonergics to be safe. Also, I thought that once autoimmunity was triggered, it's not going to reverse with removal of the trigger, a bit like a virus. I'm not sure about that! It looks like Zoloft induced lupus antibodies/positive titre with me. I hope im wrong about autoimmunity!

 

No, Smiley thinks there is a connection between recovery from mold toxicity and benzos. Autoimmunity can be triggered by mycotoxicity, so the connection is not a direct one at all. Apologies if I was unclear.

 

Smiley is anti-psych meds generally. She believes deotxification from toxic exposure is impaired by them. The effect doesn't equal autoimmunity though it can be an outcome.

 

I think she would say that, in my case, I wasn't a high risk for an autoimmune array with just the psych drugs since I've been off them (but benzos) for 30 months but that they and withdrawal syndrome generally predisposed me. Environmental factors pushed the boat way on down the river and, possibly, over the falls. She feels strongly about the mold. Even without the testing back, I'm pretty much in agreement. I got massively worse after spending long baths in what turned out to be moldy water.

 

Since I have so many characteristics of mold toxicity, it'd be an amazing headfake if this timing is a fluke, the mold is benigh and the whole of it is due to a worsening of psych drug w/d syndrome alone.

 

My understanding is that if the results are accurate, I am autoimmune and won't ever become unautoimmune. So I think you're right. But, if I can reregulate the immune system, I can get it to calm itself. Tissues already destroyed are not likely to come back, but ... who knows...?

[alexjuice]

UPDATE:

 

Got lab report back on sample of the bathtub wall and also household dust sample. Wall sample tested positive for 4 mold species, including the 'bad actor'.

 

On the wall, we had the worst possible characterization (spore concentration) on aspergillus and stachybotrys; COLONY. We the 2nd worst possible concentration on another mold and 'Hyphal fragments' which represents the 'roots'; TNTC - Too Numerous to Count. That bathroom, the entire house is toxic.

 

Stachybotrys, aka black mold, is the most toxic indoor mold, and that's what I breathed and, worse, bathed in with a hypersensitive and vulnerable immune system after Drugs.

 

The dust sample showed one of the highest tricothecenes counts - a toxin left behind by Stachybotrys - my mom's mold analyst has ever seen. The dust was taken from the baseboards of the entire house.

 

I just stepped out of a 3 way call with the mold analyst and my mom. My mom and he are discussing the viability of the house going forward, what furniture/possessions may be redeemable, insurance options and so on... and I am tired, so I hung up.

 

Basically... I am not surprised. I am sad and weak tonight. I will get my personal urine results back next week.

 

Thank you everyone for being so supportive.

 

Alex

[Karma]

Hi Alex,

 

Wow. The news about the mold in the house is devastating. Does your mother have any symptoms? This is just an awful situation.

 

I'm sorry that looking for a home is so challenging - it would be to some degree for anyone, but when one is feeling ill, it makes it even more difficult.

 

I know that all of the illness, all of the symptoms are so difficult for you and I wish I there was something I could say to help, even just a little bit. There is a lot to be said for having a root cause so there is something to work on, but this is really a hard one.

 

Keep us posted - know that you are specifically called out in my prayers for healing and a safe place to live.

 

Love and light,

Karma

[tezza]

Hi Alex,

 

You are in my prayers, too! Hugs and love for you.

 

Tezza

[Nikki]

Alex I live in Southern Florida (the mold capital) of the galaxy. We deal with mold all of the time here.

 

Our AC units come with lights inside of them to kill mold and some type of ionic something or other to prevent mold in the vents. There mold outside and we all work to get rid of it on our roofs, patios, and showers, etc.

 

When there are hurricanes, the black toxic mold is a huge problem. Heaven forbid there should be a leak behind the walls.

 

Because of this, alot of people here have autoimmune issues resulting from mold. These conditions generally clear up after their homes are mold free. However they take alot of antifungal medications like Nystatin and Diflucan. Totally abstain from sugar and bolster their immune systems with supplements and probiotics.

 

Down here, we clean alot with Bleach. I mean we really use alot of bleach. I just ripped up my carpets upstairs and there was mold on the padding. Carpet cleaning is a mold producer. Tile or concrete overlay is the way to go.

 

Alot of what you may be experiencing may be related to your exposure to mold.

 

Have you taken Nystatin or diflucan? They really work well and will turn your stomach issues around big time.

 

Hugs

[alexjuice]

Thanks for the kind words, thoughts and prayers.

 

I've taken one Rx antifungal - Nystatin to kill yeast. Antifungals are insufficient to the larger task, unfortunately. Trichothecene mycotoxins are produced by mold and poison the body. Sadly, they are not actually mold and aren't affected by any antifungal. As far as I know I do not have a mold infection (infections are very rare except in cases like full blown AIDS) but am full of mycotoxins/aflatoxins. I take a drug to help the body the expel them - Cholestyramine

 

 

UPDATE:

 

More mold was found. The house is undergoing another round of remediation, all porous possessions inside are lost. My mom and I are moving to Saco, Maine where she owns a place. She is okay, though I've noticed a stark deficit in her short term memory since she returned to the house. She moved out on Friday.

 

Been reading moldrecovery.blogspot.com about another family's horrific ordeal with mold. Really upset by all of this. Don't know what to say.

 

Doctors haven't got it all straight yet.

 

Dr. Smiley (mold) thinks I will fully recover but that recovery will take months or years. She thinks my autoimmune issues are not as severe as they appear, that the mold toxins have fudged up the immune system but things will come back.

 

Dr. AI (autoimmune) thinks mold or no, I've got a serious, life-changing auto-immune complex. Perhaps this was triggered by the mold, or trigggred by psych drug w/d or extreme stress from psych drug w/d + mold toxicity... He doesn't know. In his opinion, I must get my immune system under control.

 

I tend to side with Dr. AI. I have lost 50-75% of my tesicular mass. Bloodwork showed antibodies against the testes... I don't think the mass is recoverable.

 

Now worried about additional autoimmune conditions for which I also show predisposition...

 

Some labs in the next two days. Fly to Maine on Friday.

 

....

I can kill myself with food I think. I once tried suicide and discovered myself more resilient than I expected. I am not suicidal but it has occurred to me that I couldn't withstand too many apple pies a la mode now. I am weak, thin, systems in revolt. I feel 100 yrs old, like a fall might do me in.

 

It's a weird place to inhabit, this life.

[Barbarannamated]

Alex, I wish I had something helpful to say..

 

I am sending positive and healing energy your way. And many, many hugs.

 

B

[Altostrata]

Wow, Alex, major life changes. Hugs and healing thoughts and lots of energy to you.

 

Well, finding that mold may have saved your mother's life as well as your own.

 

Be sure to get the name of an autoimmune specialist near Saco from your present doctor.

[areyouthere]

Thinking about you and your Mom, Alex. Hoping the new digs will do well for you.

[Barbarannamated]

Hey Alex. I hope you're getting settled into your new home without too much distress.

 

Let us know how you're doing when you can.

 

{{{HUGS}}}

 

B

[Nadia]

Wow... this is awful news, Alex. But at the same time, what a relief to finally KNOW. You must have felt like you were going crazy with all the symptoms and vague test results.

 

I really hope this is the beginning of a path to healing for you. Courage on your way forward!!

[alexjuice]

Thanks for the well wishes, hugs and concerns. I am in Maine for now. Also in a state of shock.

 

Everything is confused now. My psych med d/c beginning shortly after moving in with my mom (and mold) muddies things very badly.

 

My situation is muddied too. I don't know how my recovery will go now. I am dealing with feelings of the unfairness. To me, I'd took action against the medications which I now see had upended my youth. Clear from most of the haze, I realized how horribly I'd been misled and the costs I'd incurred.

 

But then this thing hits and it's hard because I've already lost too much time.

[Barbarannamated]

Glad you checked in, Alex.

 

My natural tendency is to insert pep talk here, but I will refrain because ~ i think ~ sometimes we have to sit with *it sucks* for awhile. You have been through more in your years than most people experience in a lifetime. It is not fair. It is very unfair. It is wrong.

 

I wish I could make it notsowrong for you.

 

We're here for you, Alex.

 

Love,

B

[Karma]

Hi Alex

 

Here is a great big hug for you! I think anyone who had to move out of his house, live in a hotel, and then had to move across country would be in a state of shock!

 

I think it is completely normal to have feelings of "unfairness." You have a right to your feelings and the only way to get to the other side of feelings is to experience them. Take your time, experience your feelings, but then when you are ready come up with a plan.

 

Like Barb said, we're here for you ...

 

Love and light,

Karma

[areyouthere]

Alexejice.... how are you doing?

[alexjuice]

UPDATE

 

Been in Maine for over a week. Tough because we had to leave stuff behind. Lucky to have this house to come to.

 

Got my mycotoxin profile back. As expected I had high levels of two toxins (trichothecenes and orchatoxins). Dr. Smiley also thinks I've been colonized and prescribed terbinafine which is a nasty drug. I've not yet started it but may. I dunno. It's not clear it's effective and it's highly hepatoxic.

 

I've submitted another sample to genetic analysis. The course of these illnesses is largely affected by genetic factors (luck/badluck) which I, obviously, have no control over.

 

I am trying to find a doctor up here. Not much luck. Also trying to talk to a mold doctor, someone who is supposed to know what he is talking about. He is playing hard to get right now, frustratingly.

 

I reduced my K before leaving. I plan to taper to 2mgK (from 2.375) by hard cutting. Then I'll hold a bit, depending upon mold-treatment input. From there, liquid titrate the taper.

 

Stay off drugs kids.

 

Hope everyone is doing okay.

 

Alex

 

PS - I really like you guys for people I've never met yet.

[alexjuice]

Also, I left my computer behind on which I had a bunch of Alex videos I'd yet to upload. I plan to make more video updates which will follow my recovery.

[Karma]

Hi Alex

 

How did you feel after the K cut? I'm not sure I would have made a cut with all the changes going on ... but hopefully you didn't experience any really difficult symptoms. I think the liquid taper is a good plan.

 

Are you still working with the doctors from where you lived before? Are they willing to support you long distance?

 

How are you posting without your computer ? I go through withdrawals if I don't have my computer and a connection to the internet ... but then I haven't joined the modern world with a smartphone yet .

 

I agree with you about the people on this board, Alex ... it amazes me how much love and support we are able to share with one another without ever having physically met each other ... I think it is a beautiful blessing.

 

Love and light,

Karma

[peggy]

Wow, what a journey - but in some ways is good news to have validation. I hope you can settle in quickly and find a doctor who can monitor your treatment.

 

I am away from home too and find the lack of internet frustrating - it's amazing how quickly we become completely dependent!!!

[Altostrata]

More hugs to you, Alex. You are a brave, brave person.

[alexjuice]

I can feel them. For months, I feel them in my back and groin. It feels like there are energy bugs inside me. My 'carbonated' urine always reminding me of my infestation.

 

If psych med w/d syndrome is a riddle to docs, then I'm a riddle wrapped in an enigma. (or however that saying...) Mycotoxicosis is a riddle too, misunderstood, denied by the insurance industry, 'it's all in your head'... I'm learning of a great many parallels. Getting care is tough. At least there are tests for mold spores and trichothecenes... With my sensitivities things are complicated though. Mold doctors don't know about psych meds and vice versa.

 

I am very sad right now. Not just about this mold thing, but about some of the consequences. I know a lot of folks -- thanks to this forum -- who helped me in the beginning of my untangle from multiDrugging. Now there is also this new thing except I am starting from scratch and there are no folks to help me, not like here anyway.

 

How do I feel? There's no feelingword for it.

 

...

I saw this throwaway movie where Ben Affleck plays Tom Clancy's Jack Ryan character. I forget the movie's name. Anyway, at the big climactic moment the US president, in the response to a nuclear attack in baltimore, has decided to launch a nuclear ballistic missile attack on Russia and basically ruin civilization. He's like Air Force One and he's all covered in nuclear ash. He turns to his national security advisor ... "I can't believe this is my presidency..." he says. And just before he can set the launch in motion, Ben Affleck shows up and saves the world from Armageddon.

 

Everyday I think back on the last 14 years and picture the fake president on the plane in that movie and think to myself "I can't believe this is my life..." There's no Ben Affleck coming. Only Me.

[alexjuice]

Four days ago I suspended one of my medications for removing mold toxins because I was having side effects, namely I was urinating too much, always felt like urinating, urinating colorful urine and I will talk to a doctor today about how best to proceed.

 

For whatever reason, pausing this medication has resulted in a massive increasse in pain. Mostly in my back but also headaches. I also react to foods and have had painful, chronic constipation for many weeks, maybe months. The medication made the constipation much worse (constipation is the primary side effect) which is another reason that I took a break.

 

I do have an appointment with a doctor today. It is at 9:30am and is 3 hrs away so no sleep tonight. For months I have been dealing with serious insomnia and it's not gotten better after uprooting across the country. Decreasing klonopin isn't helping.

 

Been at the K:2.125 V:12.5 for a while and plan to hold it for a while longer. It is very hard because the main mold drug binds to mold byproducts so that they can be expelled. It's nonspecific so it binds to everything. I am supposed to take it 4x a day but I can't take any medication 1.5 hr before or 3 hr after -- not if I want to absorb it anyway.

 

I take the benzos in one dose, but I wish I'd tapered a year ago because I am in stuckville.

 

My main priority is removing the mycotoxins from the my body. They can do serious harm to the kidneys (particularly)...

[alexjuice]

UPDATE:

 

Ongoing struggle to get on a schedule and dose benzos. Bumped back up to 2.25 (so down .125). I am on other medications and it is too difficult to taper because I can't tell w/d symptoms from side effects. I am finally off the Klonopin and am happy to be a totally compounded clonazepam free from lactose, corn starch, etc.

 

I am found a doctor and am waiting for test results.

 

I am also going to retest my stool as my digestive system is far more janky than it was in April and I need more accurate data.

 

Otherwise, I am totally spun out. I am having trouble grasping what has happened to me and how best to proceed. I get "advice" from physcians but I am not confident in their confidence in the effectiveness of the recommendations. Maybe I am too cynical after psych Drugs and Wont' Be Fooled Again, but I don't think that's the case here. I think my only move is to go with the guesses that seem reasonable and hope the surprises are over.

 

Alex

[Skyler]

UPDATE:

 

Ongoing struggle to get on a schedule and dose benzos. Bumped back up to 2.25 (so down .125). I am on other medications and it is too difficult to taper because I can't tell w/d symptoms from side effects. I am finally off the Klonopin and am happy to be a totally compounded clonazepam free from lactose, corn starch, etc.

 

I am found a doctor and am waiting for test results.

 

I am also going to retest my stool as my digestive system is far more janky than it was in April and I need more accurate data.

 

Otherwise, I am totally spun out. I am having trouble grasping what has happened to me and how best to proceed. I get "advice" from physcians but I am not confident in their confidence in the effectiveness of the recommendations. Maybe I am too cynical after psych Drugs and Wont' Be Fooled Again, but I don't think that's the case here. I think my only move is to go with the guesses that seem reasonable and hope the surprises are over.

 

Alex

 

Hi Alex, I've been reading all your posts and am so dismayed at how much you have suffered. Absolutely dreadful. I hope you are able to enjoy Maine a little.. even though it's soooo much colder than Texas!

 

Trusting docs, had I been through what you have been, I'd be most skeptical. I just don't understand how all these expensive souls missed a mold diagnosis when you lived in such a high risk area. Not to give you another reason for being skeptical, but you must be asking yourself the same.

 

Hopefully you will see some progress and start to heal. Glad to hear you got the clonazepam straightened out.

 

Schuyler

[areyouthere]

Alex... do you feel better since being out of the mold situation &/or are you still dealing with your body's response to the mold?

[tezza]

Hi Alex

 

I'm just stopping by to let you know you are in my thoughts often!

 

Love and big hugs,

 

Tezza

[alexjuice]

Hi Alex, I've been reading all your posts and am so dismayed at how much you have suffered. Absolutely dreadful. I hope you are able to enjoy Maine a little.. even though it's soooo much colder than Texas!

 

Trusting docs, had I been through what you have been, I'd be most skeptical. I just don't understand how all these expensive souls missed a mold diagnosis when you lived in such a high risk area. Not to give you another reason for being skeptical, but you must be asking yourself the same.

 

Hopefully you will see some progress and start to heal. Glad to hear you got the clonazepam straightened out.

 

Schuyler

 

Thanks for the kind words. I am still sorting things out and don't know how much longer I'll stay here.

 

I wish there was a doctor who had had a case like mine and knows what to do. So far there is not. And I'm trying to sort it out.

 

Alex

[alexjuice]

Hi Alex

 

I'm just stopping by to let you know you are in my thoughts often!

 

Love and big hugs,

 

Tezza

 

Thnx so much, Tezza. HUGS to you, too...

[alexjuice]

Alex... do you feel better since being out of the mold situation &/or are you still dealing with your body's response to the mold?

 

I wish I could say I feel better but I don't.

 

I feel like I have an infestation that is going in the wrong direction. It's not too dissimilar from my first months off Effexor when my family got tired of hearing that I wasn't "all better yet"...

[alexjuice]

UPDATE:

 

I am struggling to comply with a treatment protocol and stay on my benzo medication. They are like oil and water.

 

I got back results from some mold allergy testing and I am very reactive all over the map. I can't eat sugar, dairy, grains, and so on due to immune response. I haven't eaten this stuff in a long while, since I started reacting in May, but testing showed milk was especially problematic, though this this blood was drawn while I was taking lactose-containing benzos and that may explain the elevated cow's milk number.

 

I ran an ERMI test on the Maine house. It is moderately moldly and it's been recommended that I find a different place to stay.

 

Lots of twitching, the skin around my eye and nose is discolored (lighter) or possibly the skin abutting it has gotten darker. GI infested with yeast due to diminished immune response.

 

Reran testosterone (free and total) and got lowest results ever. Free was 1.5pg/ML (range: 8.7 - 25), Total was 71ng/DL (range: 378 - 1187).

 

I wish I could describe what it feels like, but I don't know how. Feels like I have bugs inside me.

 

Starting a more potent antifungal, hopefully that goes okay.