Sanity Check Post

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dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 5/30/2018 4:38 PM (GMT -6)   
Hello guys,

I know you all can't tell me what and why certain symptoms are happening to me right now with 100% certainty. But this post isn't really about that.

I need a sanity check.

I'm in my own head again. In the past 2.5 years of lyme, based on symptoms, I thought I had all kinds of rare (or at least rare-ish) disease. Rare/rare-ish, especially at the age of now 34 (31 when all this started).

But whenever a group of symptoms happen and it mimics others I go through a period of freaking out.

I've thought I had Parkinson and my life was over. I've thought I had early onset Alzhemiers and my mind was done. I REALLY thought, I had ALS just 8 months ago but symptoms resolved and I'm fine now in that aspect (and ALS doesn't work like that). I've thought I had countless number cancers (some as rare as 1 or less percent chance of happening). And the list can go on.

Now with some of my most recent symptoms and experiencing different "like" symptoms I'm getting into my own head again. There's a couple of very worrisome symptoms that occurs in a disease so rare it only occurs to 0.006% of the population at any one time. I rather not say what it is because I'm embarrassed by my irrationality.

So yes, I've been trying to find some much more probable answers. But those answers sometimes requires to much reaching and then this super rare disease keeps popping up in my research.

I try to tell my self to use logic and sanity here. It's almost not statistically possible for someone to have had all these different rare/rare-ish disease in 2.5 years. 8 months ago I swore I had ALS (another rare-ish disease) and now I have a super rare one.

Yea I know it's dumb, but these symptoms are real and happening so it's not like I'm deciding to worry about stuff for fun. I would love for the rollercoaster that is lyme to stop.

So I just need a sanity check.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

physedgirl09
Regular Member


Date Joined May 2017
Total Posts : 399
   Posted 5/30/2018 5:01 PM (GMT -6)   
Hey dacarte,

Well it's safe to say you are not alone or insane!! I say this because I've been exactly where you are and still am!
When i first got sick and sometimes now I see feel like i have Parkinson's and ALS. I have the shakes and my nervous system is nuts causing me to constantly have the shakes...andb last year I had such bad muscle wasting I actually have a dent in my calf on the side..looks awful but makes me think I have ALS..and that gets me upset on a daily basis...
I don't think you should be embarrassed to post your concerning symptom....cuz honestly people on here probably have it too so go ahead and post it....
Hope this puts your mind at ease!

Garion
Regular Member


Date Joined Feb 2018
Total Posts : 34
   Posted 5/30/2018 5:14 PM (GMT -6)   
Hi Dacarte

Not really sure what you are hoping to hear.

For what it's worth. A few months ago i went through hell thinking that i had ALS. That's when i started posting here and you were one of the first to respond. Like you said ALS doesn't just stop, or wait for a few months, its progressive. Also i don't know what illness you are referring to when you say its really rare. I think ALS is rare, and considering your age, it would make it REALLY rare. I know because i'm 32, so i looked into the stats on that.

As for thinking you have all these diseases, i think it's normal in our position. Not healthy... but normal. I still don't fully believe that I have Lyme, my symptoms scare me and there always seem to be patterns that lead me to different potential diagnosis.

You have seen some improvement from treatment haven't you? If you have that should give you confidence that it is Lyme and nothing else, or at least bacterial in nature.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 5/30/2018 5:19 PM (GMT -6)   
physedgirl09 said...
Hey dacarte,

Well it's safe to say you are not alone or insane!! I say this because I've been exactly where you are and still am!
When i first got sick and sometimes now I see feel like i have Parkinson's and ALS. I have the shakes and my nervous system is nuts causing me to constantly have the shakes...andb last year I had such bad muscle wasting I actually have a dent in my calf on the side..looks awful but makes me think I have ALS..and that gets me upset on a daily basis...
I don't think you should be embarrassed to post your concerning symptom....cuz honestly people on here probably have it too so go ahead and post it....
Hope this puts your mind at ease!


It's physical changes that don't look like healthy changes. Normally you can find things on lyme explaining most physical things. Like your dent in your calf (which by the way I actually have as well to a degree). But this I can't find the lyme connection. I guess I don't want to say more so out of I don't want to give a disease with the odds of 60 in 1 million (420K out of 7 Billion+) people justice. I have to find another more probable answer.

I've started to see somethings on how Bartonella can create "related" things, so it makes me think if it can do those related things why not this.

It most likely has to do with lyme and co's ability to age a person rapidly. I know my mom aged 10 years in less than a year. And I went through "rapid aging" to a degree in the first year of lyme.

But once again, this post is not really about that.

It's about how awful lyme can be, where REAL things/symptoms are happening so why wouldn't a person think it's X,Y, or Z? And then later when one survives it (the symptoms), it's clear that it wasn't "that".

Then what the heck was that and WHY. WHY WHY WHY.

I know Lyme is the great imitator but sometimes it just gets ridiculous.

And then logic stops being relevant and we go down these dark mental rabbit holes. I can't have 10 rare/rare-ish disease (especially at my age) in a 2.5 year time span.

The worse part about lyme is the psychological torment it creates. That's the worse "symptom".
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

julymorning
Veteran Member


Date Joined Jul 2015
Total Posts : 3827
   Posted 5/30/2018 5:23 PM (GMT -6)   
Hi Dacarte. long time no see.

We know that Lyme is the great imitator. Please don't be embarrassed to post about how worried you are, Lyme and company are relatively alone in the world of health that invade every part of us and can cause so much damage.

Please take the time to watch the video I posted on my panic attack and Lyme thread. It's an hour long but she touches on so much besides the neuro aspect. I know it's an hour long...I have to watch it in small batches and then put it on hold for a bit.

I'm hoping beyond hope that she has a logical remedy at the end of it all, since this concentrates on chronic cases, not the ones that get 'cured' in 10 days to 3 weeks of mono abx treatment.

My best to you!
Moderator, Lyme Forum

Fibro diagnosed '85 Lyme (false?)positive '92,Osteoporosis, COPD, Hypertension, degen. disc disease, RMSF pos. Spring 2015, CHF, osteoarthritis. No LLMD. Used Doxy, Zithro and Flagyl s2015-16, mono each time. Useless. Current treatment JK, Milk Thistle, kudzu for head fullness/pressure, avena sativa for nerves, Lion's mane, Green Tea caps, Bragg's ACV, lemon water, chartab

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 5/30/2018 5:39 PM (GMT -6)   
Garion said...
Hi Dacarte

As for thinking you have all these diseases, i think it's normal in our position. Not healthy... but normal.


It's super not healthy. I'm not freaking out the same way when I first got lyme where it was real deep fear, matter of fact I feel no fear (maybe I've gotten really good at blocking it out), but it's constant 24/7 "concern" I should say.

This has happened so many times that I already know and went through a lot of the stages of lyme grief.

I'm somewhere between bargaining and acceptance, like a mixture. I can "accept" it if it doesn't progress and get worse.

And then when symptoms halt, I fully accept and then actually completely forget about it as time goes on.

I can find post from last year when I was freaking about ALS like wasting. And I would obsesses about it. A lot of physical repair has happened but some did not. But funny how those things completely don't bother me any more and it was probably much worse in my head compared to what others may think (actually I know that is true).

So I'm going through the same rollercoaster again, but I'm just so sick and tired of the rollercoaster. I literally say "oh no, not again" when I have a very good stretch of life and then symptoms happen again. Like I can already foresee the mental hurdles I will have to go through.

I guess the point of this post is to vent and vent hard to the only other people on Earth that can understand.

Thanks for listening.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1112
   Posted 5/30/2018 5:41 PM (GMT -6)   
dacarte3,

While I don't know what it's like for you, I can tell you that I've had similar experiences.

Here's what I wrote to another forum member, back in January:

"...it's easy to let one's mind start racing with all the scary possibilities. Personally, I've had about 25 serious, life-threatening diseases -- all in my mind."

One of the best things you can do is to GET AWAY FROM YOUR COMPUTER!

Seriously.

I'm not saying never use your computer again, but give yourself a week (or, whatever is doable) to at least stop looking at any health-related topics. I've recently taken a hiatus from this forum, as I've had to do (and, have written about) in the past. I'm about to disappear again, in fact.

Today, I was away from the house for several hours, while I had to run some errands. As I was driving home, I realized I felt better. Not long after I was home, I noticed I started feeling worse again. This was hardly the only time.

Consider occupying your mind with other things. While I'm not able to get out and exercise, I sit on my back deck and either get some sun, watch the animals (birds, rabbits, squirrels, turkeys, and the occasional raccoon, turtle, or bear), do some reading, or listen to music. Or, I drive to a spot where I can watch the sunset. When I'm able, I try to visit a bookstore or library, just to get away from the house and this bleeping computer! Watch something funny - perhaps The Three Stooges or The Marx Brothers.

Also, given the rare malady that only affects 0.006% of the population at any given time, consider all the people walking-around with tens or hundreds of pounds of extra weight, eating terrible, drinking, smoking, using toxic personal care products, and perhaps even using drugs that do not suffer from any chronic conditions.

Now, of course, none of those things are "optimal," but my point is to illustrate the fact that the body is always trying to heal and move toward homeostasis. The better the inputs you can give it (quality food, sufficient sleep, clear air, filtered water, STRESS REDUCTION, etc.), the better able your body will be to keep you healthy.

Speaking from personal experience: Chronic Health Research = Stress

I'm sorry to be repetitive, but I think it's important.

If you need some sort of test to confirm that you don't have that rare health condition, then speak with your Doctor. But, get to a point where you know that's off the table. Then, unplug from your computer and/or the health research for a while.

(I would also advise staying away from all news sources, too, during this time. There's rarely anything helpful on the news -- it's a collection of the most horrific and disturbing events condensed into one show and virtually guaranteed to keep most people in a state of fear and/or anxiety. It's the absolute worst thing to watch before bed, too. All that stuff just marinates in the subconscious.)

Finally, your thoughts are not dumb. As you noted, it's not like you get pleasure out of these thoughts. Many of us have had similar experiences and none of us enjoyed it. So, please don't be hard on yourself. We're all doing the best we can with what resources we have available. Progress not perfection.

Best Wishes,

The Dude

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 5/30/2018 6:06 PM (GMT -6)   
The Dude Abides said...
dacarte3,

While I don't know what it's like for you, I can tell you that I've had similar experiences.

Here's what I wrote to another forum member, back in January:

"...it's easy to let one's mind start racing with all the scary possibilities. Personally, I've had about 25 serious, life-threatening diseases -- all in my mind."

One of the best things you can do is to GET AWAY FROM YOUR COMPUTER!

Seriously.

I'm not saying never use your computer again, but give yourself a week (or, whatever is doable) to at least stop looking at any health-related topics. I've recently taken a hiatus from this forum, as I've had to do (and, have written about) in the past. I'm about to disappear again, in fact.

Today, I was away from the house for several hours, while I had to run some errands. As I was driving home, I realized I felt better. Not long after I was home, I noticed I started feeling worse again. This was hardly the only time.

Consider occupying your mind with other things. While I'm not able to get out and exercise, I sit on my back deck and either get some sun, watch the animals (birds, rabbits, squirrels, turkeys, and the occasional raccoon, turtle, or bear), do some reading, or listen to music. Or, I drive to a spot where I can watch the sunset. When I'm able, I try to visit a bookstore or library, just to get away from the house and this bleeping computer! Watch something funny - perhaps The Three Stooges or The Marx Brothers.

Also, given the rare malady that only affects 0.006% of the population at any given time, consider all the people walking-around with tens or hundreds of pounds of extra weight, eating terrible, drinking, smoking, using toxic personal care products, and perhaps even using drugs that do not suffer from any chronic conditions.

Now, of course, none of those things are "optimal," but my point is to illustrate the fact that the body is always trying to heal and move toward homeostasis. The better the inputs you can give it (quality food, sufficient sleep, clear air, filtered water, STRESS REDUCTION, etc.), the better able your body will be to keep you healthy.

Speaking from personal experience: Chronic Health Research = Stress

I'm sorry to be repetitive, but I think it's important.

If you need some sort of test to confirm that you don't have that rare health condition, then speak with your Doctor. But, get to a point where you know that's off the table. Then, unplug from your computer and/or the health research for a while.

(I would also advise staying away from all news sources, too, during this time. There's rarely anything helpful on the news -- it's a collection of the most horrific and disturbing events condensed into one show and virtually guaranteed to keep most people in a state of fear and/or anxiety. It's the absolute worst thing to watch before bed, too. All that stuff just marinates in the subconscious.)

Finally, your thoughts are not dumb. As you noted, it's not like you get pleasure out of these thoughts. Many of us have had similar experiences and none of us enjoyed it. So, please don't be hard on yourself. We're all doing the best we can with what resources we have available. Progress not perfection.

Best Wishes,

The Dude


Thank you for your post The Dude. It's different hearing it from someone that has really been there (multiple times). In a very good, therapeutic way.

Your quote is spot on and I've actually told myself this many times and I'm most likely simply doing it all over again (I was "wrong" the other 10 times).

I'm definitely going to "unplug", something I was on the verge of doing because at some point the mental stress has to end. Even if it's "lying" to myself that it's not happening, just do it for a bit. A week, like you suggested. Just because the mental stress is not sustainable.

If I can look back to the other 10 diseases that I thought I had and just relaxed and moved forward (while still treating lyme of course), I would still be in the exact same place I'm in right now. So all the mental suffering was "unnecessary".

I guess this post was the release valve to vent before moving on (obviously if anything gets too crazy I wont ignore it and go to the doctor). But in the mean time unplug.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1112
   Posted 5/30/2018 6:48 PM (GMT -6)   
dacarte3 said...
Thank you for your post The Dude. It's different hearing it from someone that has really been there (multiple times). In a very good, therapeutic way.

Your quote is spot on and I've actually told myself this many times and I'm most likely simply doing it all over again (I was "wrong" the other 10 times).

I'm definitely going to "unplug", something I was on the verge of doing because at some point the mental stress has to end. Even if it's "lying" to myself that it's not happening, just do it for a bit. A week, like you suggested. Just because the mental stress is not sustainable.

If I can look back to the other 10 diseases that I thought I had and just relaxed and moved forward (while still treating lyme of course), I would still be in the exact same place I'm in right now. So all the mental suffering was "unnecessary".

I guess this post was the release valve to vent before moving on (obviously if anything gets too crazy I wont ignore it and go to the doctor). But in the mean time unplug.


dacarte3,

My pleasure, friend. I figured it would be helpful to hear from a fellow sufferer of "Information Overload."

One of my friends is a surgeon. Around 15 years ago, he told me that some medical students manifest symptoms of conditions about which they are studying. He said it's common knowledge in medical schools.

A Google search revealed several articles on the matter. Here are a few:

/well.blogs.nytimes.com/2013/09/05/when-med-students-get-medical-students-disease
/www.psychologytoday.com/blog/in-excess/201609/brief-look-medical-student-syndrome
/www.ncbi.nlm.nih.gov/pmc/articles/PMC2267854

Here's something else to consider:

There are many Doctors and Scientists researching Lyme Disease. Many of them do this for a full-time occupation and are skilled in the Scientific Method, Statistics, Epidemiology, Biology, Virology, Chemistry, Physiology, Genetics, and the many other disciplines about which I'm clueless.

So, after your hiatus for a week or so, when you resume your research, just remember that all these Doctors and Scientists haven't yet completely cracked the code on Lyme Disease. Therefore, set a reasonable expectation for yourself of what you hope to accomplish.

Believe me, I understand the need/desire to "figure it out." I've been at this for five years, with respect to Lyme Disease. However, I've been dealing with other health issues for 30+ years. In some matters, I've had to accept the fact that there are no known answers. Maybe there will be, one day. But, until then, for some of my issues, I've gained some peace of mind by letting-go.

I like this quote attributed to Lao Tzu:

"To know that you do not know is the best. To think you know when you do not is a disease. Recognizing this disease as a disease is to be free of it."

Remember, on your research vacation, you should look for more creative (right-brain) endeavors to allow your logical (left-brain) to relax. Walking (if possible), music, movies, drawing, writing, daydreaming (about what you'll do after you recover, as one suggestion), painting, coloring (yes, as in Crayons and a coloring book), napping/sleeping, Yoga (if possible), meditation, board games, reading, cooking, sauna, warm/hot bath, etc.

After your research vacation, let us know how you're doing.

Take Care,

The Dude

mudshark
Regular Member


Date Joined Aug 2017
Total Posts : 119
   Posted 5/30/2018 7:58 PM (GMT -6)   
If it makes you feel any better I also went through an anxious period of time where I went from one scary disease to another. I'd do my research on my current symptoms, focus on the worst-case scenario, then have things ruled out by doctors, testing, and lastly common sense. When this started 4 years ago my 1st fear was ALS. I got over that fairly quickly by trusting my doctor. The symptoms that led me to that fear went away for 3 years and then suddenly came back, but with more weird crap going on this time. I was then convinced I had MS, but a neurologist said no how no way. I got over that then I thought I had Charcot Marie Tooth disease, but too much going on for that to be the cause, and too many things clearing up with antibiotic treatment.

So yes, for a 4-5 month period I was a real mess, and no doubt many of my symptoms were worse or strictly due to anxiety and fear. As soon as I'd stop worrying about one thing I'd have a brief period of time feeling good, then some new symptom would pop up and I'd find some new scary disease to worry about.

Luckily my research eventually led me to lyme disease, which is the only thing that explained the myriad of odd symptoms I'd had over the years. My lingering symptoms, which appear to be from bart despite negative test results, are frustrating and make one question occasionally if we're on the right track. I just keep focusing on the progress I've made and the herx reactions I get from herbs and abx to buttress my resolve to stay the course. You have had positive test results for these infections, so you should let that ever remind you what you need to focus on and ignore the noise.

Good luck.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 5/30/2018 8:29 PM (GMT -6)   
mudshark said...

As soon as I'd stop worrying about one thing I'd have a brief period of time feeling good, then some new symptom would pop up and I'd find some new scary disease to worry about.


I laughed. This is so me.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1676
   Posted 5/30/2018 8:38 PM (GMT -6)   
I've been sick a long time - almost 9 years. I never identified with any illnesses I researched. Instead, I came up empty handed. I looked into all sorts of autoimmune diseases, which was the most likely group of stuff, and I had a few symptoms of this one and that one, but clearly no match. I never even considered Lyme disease since I never had a known tick bite or bullseye rash. I didn't start learning about Lyme until a year and a half ago.

I can definitely relate to being too much in your head, though. I've been that way my whole life. My mother used to fuss at me for daydreaming. Most every waking moment, my mind is running trails or I'm having conversations in my head. It's a real strain and a pain. Part of that is probably my personality, but I'm sure a lot of it is Lyme & co. It messes with hormones and neurotransmitters, whatever that is.

. I joined this forum last August and I've taken only 2 breaks from getting on here. One lasted a few days and the other a week. During those times I had no compulsion to get on the forum, was able to focus on other non-Lyme things, and felt calm and peaceful. Then the OCD/ADD started up again.

Used to, I would get OCD/ADD when I had PMS, and the rest of the month I was "normal". Now it's reversed. I used to feel relief from the mental gerbil wheel at some point in my menstrual cycles, but now that I don't have normal cycles anymore, I can't even count on that.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1676
   Posted 5/30/2018 8:43 PM (GMT -6)   
The Dude Abides,

Great posts on here!!

"Today, I was away from the house for several hours, while I had to run some errands. As I was driving home, I realized I felt better. Not long after I was home, I noticed I started feeling worse again. This was hardly the only time."

Don't shoot me, but I have to say it - is their mold in your house? Any possibility at all?

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1112
   Posted 5/30/2018 9:54 PM (GMT -6)   
WalkingbyFaith said...
The Dude Abides,

Great posts on here!!

"Today, I was away from the house for several hours, while I had to run some errands. As I was driving home, I realized I felt better. Not long after I was home, I noticed I started feeling worse again. This was hardly the only time."

Don't shoot me, but I have to say it - is their mold in your house? Any possibility at all?


WalkingbyFaith,

Thank you for the positive feedback!

Also, I wouldn't dare shoot anyone for trying to help me. In fact, I appreciate your concern.

Q: Could there be mold?
A: Yes, of course, there always the possibility.

I've not seen any directly or had any tests. But, I live in a ground-level apartment of a two-story building. A year or two ago, in the apartment above me, the water heater blew a pressure-relief valve and there was a flood in their kitchen.

I wasn't home when it happened, but I think the maintenance personnel came-out and got the water heater stabilized for the night. Despite my upstairs neighbors AND the maintenance personnel having my cell phone number, none of the jackalopes bothered to call me.

So, I come home about 2:00 AM (from my girlfriend's house) and there's a small lake in my kitchen. Glancing up at the ceiling, there was (obviously) a giant wet patch with drops of water still leaking from the ceiling. The smell of the wet drywall was terrible, so I went to a hotel.

The next day, after politely chewing everyone's rear, the maintenance folks (The Three Stooges) came out with a dehumidifier and a giant fan pointed-up at the ceiling. The clowns wanted to PAINT-OVER the ceiling, after it dried. But, after raising enough of a ruckus, they finally, begrudgingly cut-out the affected areas of drywall and replaced them with new drywall, re-spackled, and re-painted.

That whole nightmare took a few weeks.

Aside from the first night I stayed in a hotel (for which the tightwad management company would NOT reimburse me the $100), I continued to sleep and work in my apartment.

Initially, my concern was the standing water in the kitchen. I was concerned about the water getting behind/under the cheap linoleum flooring. I have no idea if it did or not. But, the water was standing for a few hours.

The building is on a sloping hill. As such, there's a crawlspace under my apartment. I've been under there before, looking for the source of some vibrating/squealing water pipes. Perhaps it would be worth going under my kitchen and using a flashlight to see if I can spot any mold from the bottom.

Just thinking about that situation pisses me off all over again. I've paid over $84,000 in rent, in the 7+ years I've been a resident. The skinflint property owner couldn't even split my $100 hotel bill, on top of the other lazy, half-assed work they performed!

mad skull mad skull mad skull mad skull mad skull mad skull mad skull mad

Thanks for asking, though!

The Dude

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1676
   Posted 5/31/2018 10:03 AM (GMT -6)   
The Dude Abides,

That sounds awful!!! It also sounds like your apartment may be toxic. A lot of times mold is not visible as it is inside wall or ceiling cavities, under floors, and in crawl spaces.

You can do a visual check first. Look under cabinets in the kitchen and bathroom, walls behind sofas and beds, and take a look at that crawlspace again. Check under the refrigerator. See if there's a spot where you can lift the linoleum to see under it. Also, check the HVAC unit and look for mold around the vents.

Of course from a medical standpoint, the ERMI test is the only reliable measure. Some only get the HERTSMI-2, which measures the most toxigenic molds. I prefer the ERMI, because it gives you a fuller picture of a much broader range of molds in your environment, not all of which are toxigenic. You can calculate the HERTSMI-2 yourself from the ERMI results.

Can you move or switch units? The only issue with moving (for anyone) is you don't know what's really in that new place unless you do an ERMI and get a qualified person to inspect for mold and moisture and construction issues that contribute to mold.
_____________________

On a lighter note, that's amazing The Three Stooges worked on your apartment. The Three Stooges worked in maintenance in my office building, too. Boy, those guys sure get around!!! turn

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1112
   Posted 6/1/2018 12:44 AM (GMT -6)   
WalkingbyFaith said...
The Dude Abides,

That sounds awful!!! It also sounds like your apartment may be toxic. A lot of times mold is not visible as it is inside wall or ceiling cavities, under floors, and in crawl spaces.

You can do a visual check first. Look under cabinets in the kitchen and bathroom, walls behind sofas and beds, and take a look at that crawlspace again. Check under the refrigerator. See if there's a spot where you can lift the linoleum to see under it. Also, check the HVAC unit and look for mold around the vents.

Of course from a medical standpoint, the ERMI test is the only reliable measure. Some only get the HERTSMI-2, which measures the most toxigenic molds. I prefer the ERMI, because it gives you a fuller picture of a much broader range of molds in your environment, not all of which are toxigenic. You can calculate the HERTSMI-2 yourself from the ERMI results.

Can you move or switch units? The only issue with moving (for anyone) is you don't know what's really in that new place unless you do an ERMI and get a qualified person to inspect for mold and moisture and construction issues that contribute to mold.
_____________________

On a lighter note, that's amazing The Three Stooges worked on your apartment. The Three Stooges worked in maintenance in my office building, too. Boy, those guys sure get around!!! turn


Those Three Stooges DO get around a lot, unfortunately! Nyuk, nyuk, nyuk. "Hey, Moe!"

In the back of my head, I've been wondering about mold. But, it's likely due more to how often it's mentioned on this forum. Many seeds get planted and then they germinate and start to grow. Then, I get anxious and have to leave the forum for a while. smile

But, given "The Great Flood" I had in my kitchen -- and, the standing water for several hours -- I've always had this nagging voice in the back of my head telling me that mold could be a problem.

I've been noticing a small spot on the ceiling in my bedroom. I'm probably being paranoid and it's likely nothing, but maybe you could take a look at the photo I snapped.

It's just to the right of where the fan attaches to the ceiling. I don't know if you'll even be able to see it.

Here's a photo: /bit.ly/2sj7G5x

What do you think? Is there anything to it?

As for moving, I've long wanted to move. For a variety of reasons. There's only four units here and none of the other three units are empty. Besides, I'd like to leave this property. I'm on a month-to-month lease with no contract, thus I can leave anytime.

The two issues with me leaving are:

1. Price: The area in which I live has seen big increases in housing prices and rents in the past several years. Even if I moved into an apartment that was smaller and less nice (my current place is not that big and not exactly opulent), I'd have to pay more. Like, at least $200 per month more.

2. Income: In January, I quit my job and I'm still unemployed. Thus, in order to qualify for another apartment, I might have to lay-down a sizeable chunk of cash. And, of course, I'd also have to sign a lease. I'd be fine with a six-month lease, but many places seem to want a year. Some will allow a shorter lease, but at an even higher monthly cost. Then, of course, when you renew your lease, they jack-up your rent again. It's like Las Vegas - the house always wins.

Of course, if crap hit the fan, I'd leave and figure-it-out.

Part of me wants to investigate mold, but part of me doesn't want to know. Another part of me thinks I'm likely worrying about nothing. Then, another part of me just wants a pint of gelato. I think I know which part of my splintered self I should follow.

A few nights ago, I had one of these:

/www.talentigelato.com/products/vanilla-bean-gelato

I highly recommend it -- or, one of their many other flavors.

That might take your mind off the photo I shared.

Sincerely,

Mr. Indecisive

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 6/1/2018 12:53 AM (GMT -6)   
DUDE - I laughed out loud seeing that ceiling fan - you got me!!


I’m with you on the many seeds that are planted. I really should take a break from the forum and see how I feel - maybe I will soon.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 6/1/2018 12:57:45 AM (GMT-6)


The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1112
   Posted 6/1/2018 1:05 AM (GMT -6)   
hahaha - I knew you were online, so I kept refreshing the screen and looking for a reply. I'm glad the photo gave you a laugh. That was some seriously nasty funk.

As for taking a break from here, yes, I definitely think you should. I'm generally careful about telling people they "should" do something. But, in this case, I'm very certain you would feel better if you took a forum vacation. I look forward to your writing to tell me I was right. ;-)

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 6/1/2018 1:19 AM (GMT -6)   
The Dude Abides said...
hahaha - I knew you were online, so I kept refreshing the screen and looking for a reply. I'm glad the photo gave you a laugh. That was some seriously nasty funk.

As for taking a break from here, yes, I definitely think you should. I'm generally careful about telling people they "should" do something. But, in this case, I'm very certain you would feel better if you took a forum vacation. I look forward to your writing to tell me I was right. ;-)



Maybe I’ll take a few days off - see how it goes - I think it will be difficult for me. Isn’t that silly? All the more reason for me to do it.

Not now tho... I’ll do it in a few days... lol

tongue
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1112
   Posted 6/4/2018 12:55 PM (GMT -6)   
dacarte3: How are you doing?

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 6/4/2018 8:25 PM (GMT -6)   
The Dude Abides said...
dacarte3: How are you doing?


What a coincidence that this would be the day I poke back in here. After taking a panic break and re-gathering myself. I'm mentally in a better place.

So the symptoms and possible "disease" that I was concerned about I've come to accept could be the cause.

I'm going to a neurologist Thursday and then from there a CT Scan or MRI.

Because I've come to accept it more I'm not as embarrass to say. But my concern is Acromegaly.

There's about 10-12 most common symptoms of this and I'm experiencing 3.5 of them. Now I know what you are thinking "wait you are experiencing only 3.5 common symptoms out of 10-12 of a really rare disease and you think you might have it?".

Yes and here's why.

First let's list the symptoms I'm NOT experiencing (yet):

1. Large, growing hands/fingers.
2. Large, growing feet
3. Large growing ears
4. Large growing nose
5. growing outward jaw (under bite)
6. Headaches (a very relevant omission as it's super common)
7. chin changing shape to be more "lantern" shape
8. a noticeably deeper voice
9. Skin tags

So all these symptoms I'm not experiencing is a good thing, however the symptoms I am experiencing:

1. a growing/bossing brow ridge
2. a bossing forehead
3. a bossing right temporalis bone
4. and the "half" in 3 and half: TMJ like symptoms (which is not uncommon in Acromegaly because the growth of face and skull shift things out of alignment.)

So I'm very confused. It's a rare condition but logically you can't rule rare conditions because somebody has to get them or the condition wouldn't exist, however it's super odd that I have a few unique symptoms but missing many many more.

Or is it because I'm recognizing it "early" so all of the symptoms have not yet manifested? Who knows.

But there's no other explanation out there except maybe Paget's Disease to explain these 3.5 symptoms.

Therefore I going to get a CT scan, so if there is a pitutary tumor I can take the necessary steps to get it removed.

I just don't know what else this disease (lyme) can directly and indirectly do to me. Nothing surprises me with lyme. Nothing.

Not trying to throw a pity party here but how can one human have lyme, ALS-like symptoms (rare), morgellons (yes that's right morgellons, the other super duper rare condition), and now quite possibly this (rare). I'm mean this is just bonkers.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Lvg123
Regular Member


Date Joined May 2016
Total Posts : 107
   Posted 6/4/2018 8:40 PM (GMT -6)   
Hello,

I don't know your symptoms or your tests but it sounds like you have Neuroborreliosis and you are having a lot of anxiety. This is very common once it gets into your neurological system and I had the same thing...I also second guess my diagnosis all the time and try and search to find a different diagnosis. This is all a part of the psychiatric symptoms of Lyme. It's also hard to believe you have Lyme when after taking medication you aren't fully better so you start doubting everything. Just hang in there...do the treatment and you will see improvement in a couple years.
Not sure when I was infected with Lyme Disease, but I started to get very sick in June 2015 (6 months after giving birth). I progressively got worse and worse and could no longer do my job and was fired in March 2016. I went to many doctors and no-one could diagnose me. Finally I got an Igenex test and I was IGG was positive for Lyme (not IGM). I started treatment in December 2016.

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1897
   Posted 6/4/2018 8:46 PM (GMT -6)   
Lvg123 said...
Hello,

I don't know your symptoms or your tests but it sounds like you have Neuroborreliosis and you are having a lot of anxiety. This is very common once it gets into your neurological system and I had the same thing...I also second guess my diagnosis all the time and try and search to find a different diagnosis. This is all a part of the psychiatric symptoms of Lyme. It's also hard to believe you have Lyme when after taking medication you aren't fully better so you start doubting everything. Just hang in there...do the treatment and you will see improvement in a couple years.


I'm not doubting I have lyme. I have the positive test results. However 3 symptoms I listed I really am experiencing. It's not made up. These changes have occurred enough to visually notice and feel to the touch.

Like really visibly noticeable when they weren't before. Enough to trigger a "hey this doesn't seem right" thought.

Other people have felt and seen them as well, so it's not just me.

I really do wish lyme was making me "hullicinate" and none of this was real, trust me.

P.S. You can have more than one health issue at one time. Everything isn't literally lyme disease.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Borrelia, Babesia, Bartonella and Mycoplasma (treating everything to be on the safe side): May 2016 - Dec. 2016; 8/2017 - Present

Post Edited (dacarte3) : 6/4/2018 9:02:05 PM (GMT-6)


The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1112
   Posted 6/4/2018 10:10 PM (GMT -6)   
dacarte3,

Hey, friend. Thanks for checking-in again.

Well, I must say that I admire your logical approach and can appreciate your thinking on the matter. As I read your explanation and rationale, I felt like thought "This is likely how I would approach it, too."

You're right that SOMEONE has to get those rare conditions like Acromegaly and Paget's Disease. Of course, I hope it's not you.

While we don't want to hyper-focus on everything that comes along, mentally turn it into something that it really isn't, and get all worked-up, I think you're exercising good judgement.

You've observed physical changes, conferred and confirmed with others, and you're now going to have some diagnostic imaging to get more information. Then, based on the information, you'll either have enough data to make a decision - or, your doctor will help guide you through additional inquiry.

Work with the facts and know all the options. Get a second (or, third, or fourth, etc.) opinion, if you feel the need.

I totally agree with you that, when Lyme is involved, nothing should be assumed nor should anything be taken off the table. It's unpredictable.

As for the ALS-like symptoms, morgellons, AND possible Acromegaly - all in the same person - it makes me wonder if there are really three different conditions happening. Or, are all the various symptoms simply the manifestation of a common, underlying, yet-to-be-identified/-named malfunction?

Sometimes, as you know, there are many overlapping symptoms among various health conditions. Which condition a person gets diagnosed with might be by chance. You know how the medical system loves to put things in boxes and label them. They need a diagnosis, in order to treat it.

Anyway, I do hope you receive only favorable results and good news from your CT/MR scan. If you're inclined to share the results, I'd like to know how you're doing. If not, that's okay, too.

Wishing you the best,

The Dude

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32588
   Posted 6/4/2018 11:20 PM (GMT -6)   
Hey dacarte - I’m sorry you’re having to deal with this- I can (as can most of us Lyme patients) sympathize - I still question if “all” I have is Lyme and co’s.

I had an mri of my pituitary gland prior to Lyme diagnosis.
It’s best to have the dye enhanced mri especially since the pituitary gland is so small.
I was ruling out a tumor because of high blood and urine cortisol.

Btw - have you had the blood test for growth hormone levels done?
Just something that could perhaps rule out the condition without having to do the imaging.

Best of luck dacarte - and remember the condition you are concerned about is treatable.
I am hoping for you that everything is “clear” .

Oh ... and it’s possible that Acromelagy could maybe be caused by lyme?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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