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Old 06-10-2008, 08:23 PM   #1
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Lyme/Mold Combo

. . . frustrating, somehow I just lost what I had typed for a half an hour on a thread I wanted to start. Usually I save it as I'm typing it, not this time I guess.

Well here goes, what I had down before. . .some of it at least

I was wondering how many people with Lyme have trouble with mold and musty environments. I wonder if my problems stem from Lyme? Mold? or both? A light load of Lyme and mold exposure at apartment and/or work?

Symptoms fluctuate though. But some of them also fluctuate between environments. For me I seem to feel better in "cleaner" environments sometimes. Maybe my liver is tired and really shows it in environements that are really taxing.

I know Lyme and mold symptoms can be similar. My LLMD didn't indicate that he thought anything other than clinical Lyme when I met with him and talked about my symptoms before and also after the Tetra. It's hard for me to believe that the Tetra wasn't stirring things up, because I felt it. The buzzing, twtiching stiffness, joing aches, etc. An exageration of symptoms and some returning symptoms I haven't had for a while. It's also hard for me to believe that IGG 41 on my test means nothing,along with a clinical diagnosis for Lyme. I really don't think antibiotics would do anything against mold spores/mold exposure. It felt like I was really herxing no matter where i was.

On the other hand I know my apartment can definitely agitate my symptoms over the last few years. When I have gone away for 2+ days and then come back, some of my symptoms get worse and I can't sleep at all for that first night back- "wired so to speak". Then I go into work and my symptoms sometimes get worse too. Seems like I do have a vague monthly and a weekly cycle, makes it really confusing.

The confusing thing is that the Tetra seemed to really agitate stuff. Felt worse off and on during it. I just finished it last week and the first few days off of it were difficult, the last few have been pretty ok/decent. My LLMD said that we'll go by my symptoms for now and how they respond to the antibiotics.

I'm sure Lyme is smart enough to adapt to our bodies and take advantage of when our body is challenged by mold or chemicals or stress. I'm wondering if mold and Lyme feed each other.

I'm just confused because I seem to feel better than I did 2-3 years ago. If it was mold I don't think my symptoms would be better. They would be the same maybe. I dunno.

In any event I'm going to change my apartment and cross that off the list. I have a feeling it will help no matter what. Take one thing at a time.

I was wondering if anyone else had mold/musty issues with Lyme. I also have chemical sensitivities but they seem to happen more in certain enviorments. However, If I come in contact with a candle, cleaner, or something else in another environment it still triggers symptoms. My symptoms seem to be in progression with Lyme and not mold.

 
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Old 06-10-2008, 09:33 PM   #2
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Re: Lyme/Mold Combo

Hi luckeeluke,

i also have chemical sensitivities that have been getting worse for years. i've found that if you strip out all toxic chemicals you'll improve. i use a natural shampoo/conditioner, lotions, dish soap, cleaning sprays, etc. even having windex in the house used to give me such a headache. try getting rid of all of them and replacing them with an organic brand and you'll feel better.

i read an article that said people with fibromyalgia often have chemical sensitivities... my guess is it has to do the the fact that you're already experiencing inflammation and you already have toxins in your body... if you add any more, you definitely start to feel it.

i don't know anything about mold in particular, but i'd guess it works the same way.

good luck!

 
Old 06-11-2008, 10:28 AM   #3
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Re: Lyme/Mold Combo

Have you ever had allergy testing done? I did just before I started seeing my LLMD, because my neuro thought I might have Celiac. I had been somewhat concerned about mold, but I found out I don't have an allergy to it. Not that it can't still harm the body, but still. My cousin is really allergic, and has to have mold shots or something, on a regular basis (although she has since moved from the apartment she was in, that was so bad).

 
Old 06-11-2008, 05:02 PM   #4
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Re: Lyme/Mold Combo

Quote:
Originally Posted by ktinbk View Post
Hi luckeeluke,
i read an article that said people with fibromyalgia often have chemical sensitivities... my guess is it has to do the the fact that you're already experiencing inflammation and you already have toxins in your body... if you add any more, you definitely start to feel it.
ktinbk- I think you are dead-on with this comment, at least that is what my body seems to tell me. I think the worse I feel the more chemicals and toxins are building up in my body.

 
Old 06-11-2008, 05:14 PM   #5
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Re: Lyme/Mold Combo

Quote:
Originally Posted by datgrlstef View Post
Have you ever had allergy testing done? I did just before I started seeing my LLMD, because my neuro thought I might have Celiac.
I've had the regular allergy/asthma doc work up with skin testing and "intradermals???" - little shots below the skin. Never really got "blood" tested for any kind of IGG, IGE, IGA, antibodies/reaction to mold. I know I am allergic to lots of trees, lots of grasses, few animals, dust mites, slight to a few foods. I got all the celiac stuff done- blood, colonoscopy/endoscopy, biopsies, etc.- all came up nada. Even though my body is telling me I'm gluten intolerant.

Seems like it is hard to find docs that do the good blood testing. The one doc I saw said mold exposure wouldn't create the stuff neck and other stuff, so that really makes me wonder.

As time goes on I'm pretty sure I have Lyme, but it's hard to know for sure when things are vague, like they usually are with Lyme.

I think it's kinda "funny" . I was sitting in my LLMDs office last week talking to two other patients. In addition to myself, each one of them had a colonoscopy/endoscopy at one point during their illness. Some said they react to gluten, some didn't even think to try cutting it out and said hmmmm. . . maybe I'll try that.

slight pattern - I think so. Between Lyme, gut issues, gluten, casein, sugar.

 
Old 06-13-2008, 06:48 PM   #6
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Re: Lyme/Mold Combo

My naturopath also says that my immune system took such a hit with the Lyme,that it can't handle being bombarded dailey with the crap I was washing and spraying myself and my house with. He said that if I eliminated most chemicals and toxins(including chemicals in food),my body can handle a little of the dailey stuff you just can't avoid,such as a woman walking by with smelly purfume.
I went to fragrance free shampoo,conditioner,dryer sheets,and clean with simple green products.I notice much improvement. Before, I washed my hair with smelly chemicals conditioners,detangler spray,body spray,cleaned with 409,windex,smelly dryer sheets,and ate processed foods with ingrediants that looked like hairspray,i also went with natural toothpaste.
Anytime I feel achey,i can think of a toxin I either cosumed or breathed earlier.An organic diet really made me feel good.

 
Old 06-16-2008, 07:28 AM   #7
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Re: Lyme/Mold Combo

Quote:
Originally Posted by mesmall View Post
He said that if I eliminated most chemicals and toxins(including chemicals in food),my body can handle a little of the dailey stuff you just can't avoid,such as a woman walking by with smelly purfume.

Anytime I feel achey,i can think of a toxin I either cosumed or breathed earlier.An organic diet really made me feel good.
Totally agree with your post in general, especially these two parts. Perfume kills me most of the time, dryer sheets, etc.

I definitely know that sometimes my symptoms have no rhyme or reason and sometimes they are triggered or made worse by environemental "toxins", food issues, second hand cigarette smoke, alcohol, chemicals/cleaners, or just plain tiredness/fatigue/lack of enough sleep.

Foods definitely gave/give issues gluten, dairy, simple carbs. Alcohol is not good for me, have been avoiding it all together for a while now.

 
Old 06-19-2008, 04:11 AM   #8
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Re: Lyme/Mold Combo

Yes, I have both Lyme and mold problems. I have been sick for 15 years. Did not get a Lyme test until last year, which was positive. Instead, did the doctor crawl for all those years. Some of my first symptoms were severe allergies and chronic bronchitis/pneumonia. Considering I was in my early 30’s and had been in excellent health and then literally overnight came down with all these symptoms, it was very strange. The docs of course were stymied about what to do. I went from no allergies to what seemed like the entire environment made me have an allergic reaction.

Over the years, while trying to figure out why I was sick, and attempting to try to follow many different docs suggestions, we started eliminating items.

I can’t have any chemicals in my environment, so have been cleaning with vinegar and baking soda for years. Vinegar & water makes a great glass, mirror, counter cleaner. Baking soda is good to scrub sinks, tubs, etc. I also brush my teeth with it since I am too allergic to use any toothpaste, even the natural/organic kinds. I also use white vinegar in the same amount as fabric softener to eliminate static cling—even the “unscented” dryer sheets have a smell I can’t handle. I use olive oil and lemon juice to polish furniture. Doing these things plus a legion of others—removing pets, giving up chocolate, soy, encasing all mattresses, added hepa air cleaners, and the list goes on—helped.

But I still seemed to be going down hill. But if we tried adding any of the items we removed from my environment back in, I got even sicker—so removing them was helpful. I, too, seemed to get better when out of town, but would be very ill within hours of coming back home.

At last we spent a small fortune to have our almost paid for home tested for mold and discovered we did indeed have a mold infested home, even including the deadly black mold. We also found the outside air had higher than normal mold spores due to a creek near us that flooded from time-to-time. Indoors and out everything about the place was bad for me. We emptied my husband’s retirement fund and went into deep debt to move to a “clean” environment. (We had to carry double house payments for 18 months, we were honest about our old home having mold and that caused three buyers who wanted it to walk away, someone finally bought it knowing about the mold but at a big loss for us.)

My children’s health seemed to improve with the move. My respiratory problems got some better after the move, but I started developing strange “arthritis” symptoms after living in my new home. (Years later we understood that was Lyme taking a different shot at me.)

I still have to be careful about being around any mold in the environment, I don’t eat anything with mushrooms (fungus) or alcohol (a fermented read “fungus” drink). I did quit reacting to any new things allergically after the move until one year ago. So, at least, for 7 years I didn’t loose anymore foods, inhalants, etc. But I didn’t get anything back I had already lost: chocolate, soy, perfumes, pets, and so on.

Unfortunately, a year ago I also became gluten intolerant and had to give up all wheat, barely, rye and oats—or get violently ill if I have them. I also at the same time lost “gums” that are used in a lot of gluten free recipes, so that makes things even harder. I am so intolerant that any medication I am on has to be compounded so the pills “fillers” that can contain minute amounts of gluten don’t set me off (they did make me sick until we figured out about the gluten in pills). So now we spend another small fortune on Lyme medication that has to be compounded.

When trying to find out what was wrong with me a year ago I went through the scopes down the throat and up the other end. It was also during this such that I had a blood test taken for Lyme disease (the first time I was ever tested, and only done at my request.) So I guess the gluten intolerance was a mixed blessing. It led me to a diagnosis that finally fit all my symptoms—Lyme. I had been going nuts all these years wondering what in the world happened to me to suddenly become sick. Knowing was an answer to prayer for me. Treatment so far has been verrrry slow for me.

It was good we got out of the moldy environment. Despite the hardships, the move helped.

I have tried to make this a short answer to say, “YES, I have both Lyme and mold issues.” My story is a long one over many years, with lots more twists and symptoms than I wrote here. I was trying to keep this short! :>)

 
Old 06-19-2008, 04:24 PM   #9
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luckeeluke HB User
Re: Lyme/Mold Combo

fushiacat-

What you wrote down was extemely helpful!more than a few parallels to my own situation. I plan to comment specfically on things soon hopefully. Thank you for the long post in actuallity it was really helpful.

 
Old 06-21-2008, 10:26 AM   #10
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luckeeluke HB User
Re: Lyme/Mold Combo

Quote:
Originally Posted by fushiacat View Post
Yes, I have both Lyme and mold problems. Some of my first symptoms were severe allergies and chronic bronchitis/pneumonia. Considering I was in my early 30’s and had been in excellent health and then literally overnight came down with all these symptoms. I went from no allergies to what seemed like the entire environment made me have an allergic reaction.
My symptoms started out over the first year or so with sinus pressure, sinus "infections", ringing ears, day long-every day excruciating headaches, toxic feeling and metallic taste, fatigue, off and on cold and then sweats through out the day, stiff neck, terrible jaw aches, buzzing im my teeth and face, tingling in neck, jello legs, drunk bumping into walls and dropping things out of my hands, tingling/coldness in hands/feet/legs, shin and heel pain, shortness of breath, light sensitivity, little moving eye orbs. The fatigue and stiffness were there in the morning when i got up and never seemed to leave. The tiredness I felt after lunch at work was almost debilatating. Like a brain fog, I couldn't do anything, even keep my eyes open.

They started right arount the time I moved into an apartment after living at home with my parents for a bit after college, started a new job, and was really stressed out. I can remeber clear as day it was Sunday night the night before I was starting my new job. I had this wave of headache nausea, insomnia and panic. I didn't sleep all night. This felt way different and above and beyond whatever stress I was feeling.



Quote:
Originally Posted by fushiacat View Post
I can’t have any chemicals in my environment, so have been cleaning with vinegar and baking soda for years. Removing pets, giving up chocolate, soy, encasing all mattresses, added hepa air cleaners, and the list goes on—helped.
I have started to use more of these natural cleaning elements. I can't stand dryersheets, newspaper, air freshener, perfumes, mothballs, stove cleaner, musty, moldy, damp, etc. Chemical sensitivites and a very overpowering sense of smell has been one of my hallmark symptoms. This one definitely changes back and forth while on antibiotics.

I do use a hepa air filter, and have encased my pillow and both matresses in the special covers. I am pretty much allergic to lots of stuff CATS, dogs, trees, grasses, dust mites, molds . . . I also came up slightly allergic to carrots and peanuts on a skin test. I had mild asthma when I was a kid, but that seemed to resolve itself.

I must agree with you on the chocolate. It doesn't matter what kind of chocolate I have. Dark 70%, milk, no sugar added. . . chocolate seems to make my body react. I don't know why. IT's not 100$ of the time for me but about 85% of the time.


Quote:
Originally Posted by fushiacat View Post
But I still seemed to be going down hill. But if we tried adding any of the items we removed from my environment back in, I got even sicker—so removing them was helpful.
My friends/family couldn't/can't understand why I remove certain foods, environmental chemicals. i was always a little shy and quiet- able to entertain myself most of the time, but I became more or a "recluse" because at that point I was not feeling well at all.

About two years into this 3 year thing. I figured out that the three things that look similar to my symptoms, are Lyme, mold, and gluten intolerance/Celiac. I started messing around with cutting out gluten, dairy, limiting sugar, and lmiting alcohol drastically. off- gluten got me to a better plateau, but I still didn't feel well. My sinus pressure were helped a bit and so were my headaches. Joint aches and muscle tiredness didn't seem to correlate as closely with removal of gluten.


Quote:
Originally Posted by fushiacat View Post
I, too, seemed to get better when out of town, but would be very ill within hours of coming back home.
I do feel better when I go away for a weekend, most times, but it takes at least a day or two or more. I also notice a weekly pattern and a vague monthly pattern. It's funny because I do notice almost every Sunday/Monday I fell worse. Tuesday/Wed can be really bad too. It's interesting because Sunday was the first day 3 years ago I did not feel well. Sometimes the pattern flips and I feel worse at the end of the week. This pattern seems to happen regardless of whether I spend the weekend in my apartment or go away. I do notice that when I return to my apartment on Sunday and to work on Monday my symptoms are crazy. After about 3.5 months of antibiotics now my weekly symptoms see much less

Lyme is one smart bacteria. I think it works "well" with mold exposure. I really think it can sense stress, envirtonmental toxins, changes in your body or your environement. The mold probably takes resources from your immune system and then the Lyme is able to do more if its thing.

In any event I'm looking at another apartment in my complex and hopefully moving out of this one. Hopefully in July. I'm pretty sure this will help. I'm pretty sure there is mold in the wall/and or ceiling and outside in the hallway ceiling. There is a water stain in the hall way outside my apartment.

If it was mold only, then I probably wouldn't be responding to the antibiotics. That's the kicker. I think they would make me feel worse It only took me 3 years to figure this all out. Only had antibiotics recently so now I am able to put some backing behind that statement.


Quote:
Originally Posted by fushiacat View Post
but I started developing strange “arthritis” symptoms after living in my new home. (Years later we understood that was Lyme taking a different shot at me.)
About a year after I started not to feel well, I started getting joint aches. I remember clearly it started in my fingers on my left hand moved around and now seems to be in the knees and elbows and jaw. It was actually after a 5 day dose of Cipro sor some "colitis". I know those antibiotics have their own set of nasty side effects, but I don't think that's what happened in my case. My theory is that the Cipro kicked Lyme around and caused it to take a hike elsewhere in my body. My gut is/was still having issues though. Less issues since antibiotics. At the time of the cipro I also used a lye stove cleaner to clean my oven- at that time I didn't know any better. I did wear a paper mask and some gloves but probably didn't matter if I was breathing it in. I think the two of those things "excited" the Lyme.

Quote:
Originally Posted by fushiacat View Post
Unfortunately, a year ago I also became gluten intolerant and had to give up all wheat, barely, rye and oats—or get violently ill if I have them. I am so intolerant that any medication I am on has to be compounded so the pills “fillers” that can contain minute amounts of gluten don’t set me off.
I think gluten intolerance for me is only a bi-product of Lyme, I see it getting better after more treatment, I dunno for sure though. I had the fat slick water, soft stools, and what looked like mucus for the first year or two. I think that had more to do with the Lyme. I never had the typical diareah per se, but some Celiacs or gluten intolerant people don't.

I haven't wanted to test the Gluten out much at all yet. I don't know if the gluten in the pills would make me feel worse. Hard to really tell everything apart sometimes.


Quote:
Originally Posted by fushiacat View Post
When trying to find out what was wrong with me a year ago I went through the scopes down the throat and up the other end. It was also during this such that I had a blood test taken for Lyme disease (the first time I was ever tested, and only done at my request.) So I guess the gluten intolerance was a mixed blessing. It led me to a diagnosis that finally fit all my symptoms—Lyme. I had been going nuts all these years wondering what in the world happened to me to suddenly become sick.
I went through the scopes and biopsy done at the end of June last year. This seems to be common among part of the Lyme community. Blood tests were negative, biopsies were negative. This also helped me turn towards Lyme and do a ton of research on it to see if it would fit.

The last several days on this Biaxin/Plaq have been very helpful to my metal and physical status. Finally something tangible .

I also susptect babesia and bartonella but have not gotten tested. I know artemisinin aggitates the hell out of something in my body. Deffinitely had a herx reaction to it when I took only 3 capsules back in December. Definitely not an allergic reaction.


LOOOOONG POST

 
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