Omg...i Might Be On To Something

[happygirl]

x

[Rachel--24]

I know I have said this before, I think I was bitten in the San Francisco Bay area 23 years ago.

Rinne....really?? Where abouts in the Bay Area were you?? Were you somewhere where ticks might be??

I think if I *stayed* in the city I would have never been exposed to ticks but because of my love for camping and woods and all that...I think I got bit in Tahoe but its likely I've been bit more than once.

As a child I spent a great deal of time in Russian River area....been back there a few times in the last 10 years. Its very woodsy there and I camped there a few years before I got sick. I camped in Yosemite, many lakes/campgrounds in the Central Valley area (as seen in my avatar), I camped at Lake Berryessa countless times (I think that would be Napa County??). Spent time in Santa Cruz mountains. Of course Tahoe...where I think I got infected. I could have been exposed numerous times. I never wore bug spray.

Hi Susan.

I was wondering where you'd been?? Cant really send out Dingo's for you. Was just hoping they knew where you were.

Oh....I dingo'd the fact that I was suppossed to mail you that envelope...which is "ready" to go. Today I will drop it in the box.

Sorry...I suck at taking care of stuff that involves envelopes and mailboxes.

or, he might "just" be "gluten sensitive".... oh i love these conversations

Yeah....I still dont know what it means EXACTLY when its not Celiac....but HECK....I better just stick to my diet and shut up about it.

Oh...Since I reacted to the liquid B-12 that BioSET lady gave me she decided to not give me anything that is alcohol-based from now on. Soooo she gave me a B-12 that is food-based. She tested it against me first and said that I could tolerate one pill a day.

I got home and it has wheat and oats in it.

I got scared and freaked out...not really knowing what to do. I've been on the diet a year and a half now.

I decided to not chance it and yesterday I returned it.

[rinne]

###

When I looked over the site he was my choice too.

Rachel, aspiring Voo Doo Priestess. Thanks for the great posts.

[Rachel--24]

Rachel, aspiring Voo Doo Priestess. Thanks for the great posts.

I need a break...I fear I am hogging the thread.

Laura...I'm gonna go back and read your link.

[CarlaB]

I need a break...I fear I am hogging the thread.

Not at all ... it's not your fault no one else has the energy to post.

[Rachel--24]

Ok....Laura....I would have definately picked Dr. Garzon too. Good choice.

The first one is an N.D....she wont help.

The third one doesnt have as much experience with all of the issues "surrounding" Lyme.....so I think Dr. Garzon is the best. If you had Cancer then maybe #3 would be better....but thankfully you dont have that....so I pick #2!!!

Oh...he practices both conventional and complementary methods....so I *highly* approve.

Let us know when you set up your apponintment....

[happygirl]

x

[dlp252]

Dietary changes made a difference about that time too but I was definitely on a downhill slide now that I really look at it. I gained weight too and no matter what I did I couldn't lose it.

That's where I'm at now...10 extra pounds that just won't budge.

[DingoGirl]

Hi Susan.

I was wondering where you'd been?? Cant really send out Dingo's for you. Was just hoping they knew where you were.

Oh....I dingo'd the fact that I was suppossed to mail you that envelope...which is "ready" to go. Today I will drop it in the box.

Sorry...I suck at taking care of stuff that involves envelopes and mailboxes.

VooDoo Priestess Rachel,

good morning. I had forgotten about the envelope. Yes, mailboxes and envelopes and stamps and things are very taxing, esp. for you, who ventures to the mailbox once a week and then puts things in the trunk. Not to worry, I am not eating out too much these days. Kind of in hibernation, in fact....just reading along but don't have much to add.

the dingos are here with me, sleeping more than staring, thankfully. It would be difficult for you all to dispatch the dingos to find me, wouldn't it? I have never thought about that.

My mojo is still gone. And I kind of hate my job now, they are beating the personality out of me, and that really sucks. oh, and they increased my hours before Christmas...... so I may be especially cranky.

OMG I read WildCondor's ENTIRE Lyme debacle and recovery story.....that is really something. Aren't you guys supposed to be on IV drip antibiotics? Holy cow.....I can't believe she lived through all of that.

Patti......your acceptance speech for 10,000th post - - - -

Weird not having Andrea here. It will be so nice to see her back.

Carry on, I have nothing pertinent to add. But hello to everybody.

p.s. to Richard - - no, that is not my pub wench niece, but the second oldest, who is almost 21 and I fear will be spending MORE time in pubs, only consuming instead of pouring the beverages.....

[dlp252]

Donna, I still cant believe I went through that whole "eye ordeal"....I kept going to the opthamologist and the other "seeing" eye doctors.... (cant remember what they're called). They could never find anything wrong except extremeley dry eyes. I was told I would have to live like that....and use eye drops all day long. I did not believe it...I kept going back to the opthamologist and then she told me that "I just needed to "accept" that I have dry eyes....lots of people have it."

I'm sorry but I *know* people who have dry eyes and they werent dealing with the same things....having excruciating pain, having to wear sunglasses at night, not being able to drive or watch a movie. It wasnt affecting their WHOLE life.....HELLO....how is this *just* dry eyes??

Sometimes my vision was perfect and other times not as good....it could change drastically overnight. Sometimes my eyes would just get extremely blurry. I got glasses...TWICE. I never wore them though and I didnt really need them...I didnt want to mess up my eyes by wearing them....plus they made things blurrier and gave me a headache.

The way they tested me to see exactly how dry my eyes were was to stick these little sheets of paper directly into my eyes...the papers would literally hang out of my eyes. Then I would have to sit like that for awhile. The papers would change colors depending on the moisture. It sucked and it was MOST unpleasant having those papers in my eyes.

My ex (before we were exes) could not handle watching me having to sit there with these papers in my eyes....was almost in tears about it. No wonder we are exes....that was just the BEGINNING...that was NOTHING. I think some people just cant handle illness very well....they dont know how to deal with it.

Donna,

I'm pretty sure three years of antibiotics could have held the Lyme back.....at the same time though.....3 years of antiobics is a LONG time. Being on antibiotics for that long can be really damaging to your gut. If you werent taking probiotics this could have caused leaky gut, candida, etc. I dont know if you noticed a worsening of symptoms related to your gut after all the antibiotics but I know that longterm antibiotics w/out probiotics can cause some damage. Antibiotics also supresss the immune system.

I'm wondering if its something like that for you....with the antibiotics causing a candida overgrowth and then because of the toxic buildup....mercury also became an issue. These symptoms can all occur without Lyme being involved. The BioSET lady said there are people having all of my symptoms but NOT having Lyme...but they do have candida, heavy metals, maybe virus or parasite, etc.

I guess you will find out more when you see her. I'm betting on candida showing up in her test because of all the antibiotics you were on.

But...you must have been sick before that?? Thats why you were on the antibiotics?? Something must have been happening to begin with...maybe Lyme? Maybe Celiac?

OK...now I'm really anxious to hear what the BioSet lady comes up with.

See, that's why my eye doctor says too...I just have really dry eyes (though thankfully I didn't have to have paper stuck to my eyeballs, lol), and he wants me to use drops every 3 hours! The drops do help keep me from having that goopy thing happening, but I still get the eye pain once in a while.

My eyes change too...they are blurry when I read, but sometimes they are just blurry.

Fortunately I took lots of probiotics while taking the antibiotics...my ENT was almost certain I had a candida issue, so I used those for the whole three years I was on antibiotics.

And yes, the reason I had to take so many is because I would get "sinus infections" which I am now doubting were really that. The first one was horrible, I was down on the couch for a full week with fever, chills, body aches, sore throat...seemed like it might be the flu, but it wasn't...wasn't a cold either...that was the first time he gave me the antibiotics (but before that even I had recurring bouts of bronchitis--at least these were spaced out a bit). But with that first time he gave me antibiotics and prednisone...after that (in May 2001 or so), I kept getting them over and over again, but they weren't as intense...I'd get extremely tired to the bone and very dizzy...I'd get more antibiotics...a new course about every six weeks for three years. This all happened within a few months of my hysterectomy surgery!

Donna, apparantly there is lots of Lyme here in CA.

There was a thread on the Lyme board asking if anyone in CA had Lyme and where they got it. I was pretty shocked but ALOT of people who responded were in the Bay Area.

This is the guy who appears in magazines, newspapers, he will be in the Lyme documentary "Under Our Skin" and he was diagnosed first by my favorite BioSET lady and then Igenix. I believe he still goes to Bioset for treatments. I am gonna try to contact him at some point.

I worked in Los Altos for about 8 years. There may not be deer where she lives but in Los Altos Hills there are deer, mountain lions and everything else you would expect to find in the hills. The hills are right there...just a hop, skip and a jump away. The deer ticks could easily get a ride into the neighborhood.

So these are just some of the posts from people in CA...obviously its here in the Bay Area. Other places that seemed to be hot spots were Sonoma County, San Diego and a place called Ojai???

Okay, I used to go hiking with my friend up in Big Sur, my sister lives up near Yosemite and I've done my share of walking through the brush there, and I used to taking a painting class that went out into the grassy hills around Los Altos! That's all besides the week long hiking trip to Vermont. I've camped up north of San Francisco somewhere too. Sheesh.

I haven't mentioned the "L" word to too many of my friends or family yet lest they think I am insane, lol, but I mentioned to a friend at church today in an off-handed way, and she not only didn't poo-poo me, but she knew a little bit about it and actually thinks I should get tested.

x.

He sounds very good! Promising!

[Green12]

One thing that I noticed about the Wild Condor story is that not once did the girl mention diet. I may have missed it but it didnt seem like she made any changes in her diet.

I'm thinking that the diet changes I made totally saved me from getting to the point she got to. I started out with the same severe symptoms she described....but I got better when I changed my diet.

There is alot of talk about diet on the Lyme board....I think its *key* for recovery and luckily all of us have a head start as far as that goes....even if its not Lyme we're dealing with.

Here was one post I read...I edited it to leave out the posters personal story.

The statement about most of our immunity being in the gut is true....our GI tract is where almost our whole immune system resides.

I agree aobut diet Rachel, if I would have not changed my diet I would be as sick or sicker than what she describes. Like rinne said the other day, if we ate a normal diet we would be "comotose", that about sums it up for me.

I also have to say we are lost without Andrea, our mother hen. She always keeps everything straight and organized. Usually one, or more, or all of us, have brain fog at one time or another, it's like the blind leading the blind without her, er the brain fogged leading the brain fogged :lol:

Congrats Patti on the milestone post

Hi Susie Q! Where you been? I hope all is well with you and the girls . Sorry about your job and the missing mojo...if it keeps up like htis would you consider looking for something else?

[CarlaB]

Donna, I used to get sinus infections frequently, too. Cutting out gluten made my seasonal allergies go away, and I haven't had them since. Gluten is a piece of my puzzle, but I think it's just that my body can't handle one more thing ... I think gluten probably is hard for everyone to digest, like dairy is -- some people just have more of a problem than others.

I also used to lose my voice for months every winter .... that was back when I was in school. Can't believe my mom and doctor thought that was normal.

I have the dry eyes, too. I can't stand wind at all -- even with sunglasses on. I always wear sunglasses during the daytime, but haven't had nearly the eye problems you guys describe.

[Rachel--24]

What do you guys think about the heater coming on and causing me symptoms?? What could it be from....dust? Does the heater make dust or other allergens fly around....or is there something else about the heater that could be bothering me??

[jerseyangel]

Rachel,

There is a lot of dust, allergens and even molds in the furnace ducts. Last year, we had a company come in and clean them--I think it made a difference. Remember, too, to replace the filters more often. How often depends on the type you use. We have the ones that say they filter out like 99% of the dust and stuff. Those, we replace at the beginning of the heating and air conditioning seasons.

I'm not sure how old your home is, but ours is about 10 years old. The guys that did the cleaning told us that they routinely find things in those ducts that were left there be contractors while building the house. For instance, Burger King wrappers.

[Rachel--24]

good morning. I had forgotten about the envelope. Yes, mailboxes and envelopes and stamps and things are very taxing, esp. for you, who ventures to the mailbox once a week and then puts things in the trunk.

There will be no more of that....my mom has taken over the bills/mail mess. I suppose thats even easier than on-line bill paying....cuz all I have to do is GET the bills from the box and GIVE them to my mom. Hopefully I can handle it.

That was really sweet of you to say if you lived closer you'd set up the on-line thing for me.

Its probably really easy....I'd probably feel really stupid that these types of things seem so daunting and challenging right now.

I'm glad the dingo's are watching over you...well not really *staring* at you....but keeping you safe.

IV antibiotics....sounds HEINOUS...I dont think I'd wanna go there.

That girl sounded far worse off than I am....I was there though....I can relate and I did think I was dying. I did not believe I was gonna make it...things were really bad....but like I said....DIET....it changed *everything*. The clouds lifted and I've been able to fight this ever since.

I think this is gonna make treatment easier. I think those who DONT change their diet have more struggles. It makes sense to me. All of the pesticides, neurotoxins (msg, aspartame) gluten and other allergens can severely weaken immunity enough so that some people cant effectively win this battle with Lyme.

Lyme itself produces neurotoxins....thats why the neurological/brain symptoms are bad with Lyme. Just chewing gum was doing HEINOUS things to me....it was the ASPARTAME. I think feeding neurotoxins into an already toxic body is gonna make a bad situation far worse.

I'm pretty sure that eliminating certain things (like gum) is what brought me relief from those horrendous eye symptoms and some of the other stuff.

Hopefully there will be NO IV antibiotics in my future. HEINOUS.

[dlp252]

Rachel - I went back (scarey) because I thought I remembered you saying it happened at both your mom's house and at your house (the heater thing), but couldn't find it, lol. If it were at one place or the other, I might think it was something with the heater, but if it's happening at both places, I tend to think it's the junk kicked up by the heaters. Does the same thing happen when you use your car heater for the first time?

Carla - my "sinus infections" seemed to stop after I cut out gluten/casein. It has been almost a year without that feeling...then around the end of September/beginning of October I was eating a lot of "regular" chocolate, and I started to get the "sinus infection" feeling again...pretty sure it's the casein that was overloading my system all that time and probably was starting to overload it again a few weeks ago.

[jerseyangel]

My husband's cousin's daughter has been on IV antibiotics for a while now. She has a terrible case of Lyme--she had to leave college for a while while she tries to get her health back. They live in Massachuttes.

Donna, I haven't had one of my "sinus infections" since I went gluten-free!

[Rachel--24]

I'm not sure how old your home is, but ours is about 10 years old. The guys that did the cleaning told us that they routinely find things in those ducts that were left there be contractors while building the house. For instance, Burger King wrappers.

Hmmmm....I wonder if I should have someone come and clean the ducts?? My house is 7 years old....the downstairs vents dont seem to be blowing out any air at all for the past couple years. I dont know why that would happen .

The upstairs vents are working fine and it warms up very quickly....downstairs is more open with high ceilings but I still cant hear or feel anything coming out. Maybe something is blocking the ducts?? I definately dont want mold blowing out at me. EEEK. I think I will have to look into this.

I do use the filters that say that they filter all this stuff out but I havent changed it in over a year...I think maybe 2 or even 3 years have passed.

[CarlaB]

What do you guys think about the heater coming on and causing me symptoms?? What could it be from....dust? Does the heater make dust or other allergens fly around....or is there something else about the heater that could be bothering me??

My sister is allergic to gas heat. Electric heat gives me bloody noses because it's so dry (we have a humidifier because of this). I don't know if either of those would apply.

Rachel,

There is a lot of dust, allergens and even molds in the furnace ducts. Last year, we had a company come in and clean them--I think it made a difference. Remember, too, to replace the filters more often. How often depends on the type you use. We have the ones that say they filter out like 99% of the dust and stuff. Those, we replace at the beginning of the heating and air conditioning seasons.

I'm not sure how old your home is, but ours is about 10 years old. The guys that did the cleaning told us that they routinely find things in those ducts that were left there be contractors while building the house. For instance, Burger King wrappers.

We just had our HVAC replaced ... we live in a 90 year old house and the old system was from the early 80's but I don't know when the ductwork was put in. You wouldn't believe the dirt in the old vents! There was about 2 inches of it!!!

[rinne]

Lyme itself produces neurotoxins....thats why the neurological/brain symptoms are bad with Lyme. Just chewing gum was doing HEINOUS things to me....it was the ASPARTAME. I think feeding neurotoxins into an already toxic body is gonna make a bad situation far worse.

Rachel, I read something recently about a detox from Aspartame, it is seriously bad stuff, SERIOUSLY.

I'm glad you've given them up.

[Rachel--24]

Rachel - I went back (scarey) because I thought I remembered you saying it happened at both your mom's house and at your house (the heater thing), but couldn't find it, lol. If it were at one place or the other, I might think it was something with the heater, but if it's happening at both places, I tend to think it's the junk kicked up by the heaters. Does the same thing happen when you use your car heater for the first time?

Good point Donna. Yeah....it happened at both houses....same problems with the air. It must be dust and other allergens. Its probably even worse right now since the heaters have just started being used. I use my car heater everyday...even in the summer. When I get up at around 4 am...its cold no matter what time of year....so my heater always gets used but occassionally even the car heater willl bother me. Usually only if I've already been exposed to a million other allergens and my nose gets super sensitive.

Rachel, I read something recently about a detox from Aspartame, it is seriously bad stuff, SERIOUSLY.

I'm glad you've given them up.

OMG Rinne...Aspartame is EVIL EVIL stuff. When I realized about the aspartame I was still pretty ignorant about EVERYTHING. Just going to the doctors about my thyroid, not having any clue about diet or anything else. It would be another 2 years down the road before I'd learn about gluten or make any kind of diet changes. But STILL.....I was able to clue in about Aspartame.....it was just THAT obvious that the stuff was HAZARDOUS!!! SERIOUSLY.

Fortunately I took lots of probiotics while taking the antibiotics...my ENT was almost certain I had a candida issue, so I used those for the whole three years I was on antibiotics.

And yes, the reason I had to take so many is because I would get "sinus infections" which I am now doubting were really that. The first one was horrible, I was down on the couch for a full week with fever, chills, body aches, sore throat...seemed like it might be the flu, but it wasn't...wasn't a cold either...that was the first time he gave me the antibiotics (but before that even I had recurring bouts of bronchitis--at least these were spaced out a bit). But with that first time he gave me antibiotics and prednisone...after that (in May 2001 or so), I kept getting them over and over again, but they weren't as intense...I'd get extremely tired to the bone and very dizzy...I'd get more antibiotics...a new course about every six weeks for three years. This all happened within a few months of my hysterectomy surgery!

Okay, I used to go hiking with my friend up in Big Sur, my sister lives up near Yosemite and I've done my share of walking through the brush there, and I used to taking a painting class that went out into the grassy hills around Los Altos! That's all besides the week long hiking trip to Vermont. I've camped up north of San Francisco somewhere too. Sheesh.

I haven't mentioned the "L" word to too many of my friends or family yet lest they think I am insane, lol, but I mentioned to a friend at church today in an off-handed way, and she not only didn't poo-poo me, but she knew a little bit about it and actually thinks I should get tested.

He sounds very good! Promising!

I'm glad your friend didnt poo-poo you.

I find that noone really poo-poos Lyme in the same way that they poo-poo a gluten-free diet.

They just cant wrap their heads around giving up bread.

I'm really happy to hear that you were on probiotics the entire time you were on antibiotics.

Yeah....the fever, chills, flu-like symptoms AND the fact that you're still not well and still have dizziness and neck problems...that concerns me.

I'm glad you're gonna be looking into all this soon enough. But for now....have a GREAT time on the cruise!!!

My sister is allergic to gas heat. Electric heat gives me bloody noses because it's so dry (we have a humidifier because of this). I don't know if either of those would apply.

I thought about this and it actually showed up on my petroleum chemical test yesterday but I dont really notice anything when I use the stove or oven...which I use daily.

When the heater comes on it feels like stuff is getting in my nose...like dust or other junk...it feels like the air is thick with "junk". Its better when I go downstairs....where there doesnt seem to be anything coming out of the vents. The air down there isnt thick....its crisp and I can breathe better.

OK.....its raining outside but I cant wait ANY LONGER. I have to go to the mailbox and see if my Igenix results are in there. Be back later.....hopefully with some results.

[Lymetoo]

Hey Rachel....I didn't know your Lyme test turned out positive! Yikes! PM me with who your dr is!! Was your test CDC positive?? [not that it matters that much!!]

I "know" wild condor. She's been on Lymenet as long [or longer?] as I have.

Quit feeding those Lyme-infested deer!!!

editing......OH...just saw your post about the test.

[CarlaB]

I thought about this and it actually showed up on my petroleum chemical test yesterday but I dont really notice anything when I use the stove or oven...which I use daily.

When the heater comes on it feels like stuff is getting in my nose...like dust or other junk...it feels like the air is thick with "junk". Its better when I go downstairs....where there doesnt seem to be anything coming out of the vents. The air down there isnt thick....its crisp and I can breathe better.

We didn't have a gas stove at the time, so I don't know how the stove would have affected her, but with the heat, it's all the air, but the stove only affects a portion of the air. I would think the stuff coming out of the vents would have a higher concentration of the chemicals than the kitchen would have with the stove. And after seeing our old ductwork, there is DEFINATELY more dirt in there than we all think!!!

A clean filter may help in both houses. It's something many people neglect to change regularly. Does cracking a window help at all? I try not to keep the house closed up too long. If the weather's nice at all, I try to open a window for a little while. In the winter the house is just closed up way too long! Sometimes I'll even open a window for a while when it's really cold out.

[Rachel--24]

Hey Rachel....I didn't know your Lyme test turned out positive! Yikes! PM me with who your dr is!! Was your test CDC positive?? [not that it matters that much!!]

Lymetoo,

My Western Blots werent positive....they were equivocal. They werent CDC positive. I had another test that Igenix ran the same time they did the Western Blots. It was an IFA test and it came back VERY positive. Do you know anything about this test??

It says that its only 80% specific for Lyme. It could come back positive for other reasons.....like cross-reactivity. So theres a 20% chance its NOT lyme. My Western Blots were positive on band 30, 58, 66, 41 and IND's on 34 and 39.

Quit feeding those Lyme-infested deer!!!

Is Wild Condor getting better now?? I'm not sure how recent her story was written???

Oh...I'm waiting on results from the co-infection panel from Igenix.

Ooops...you are gone so I will PM you.

[Lymetoo]

Open Original Shared Link

I think I am going to make an app't with Dr. Garzon. He seems to fit my issues the best.

You really should choose a Lyme dr by talking to several HAPPY SATISFIED CUSTOMERS first. I have an "official" list of drs. He's not on it. His website sounds good, but I caution you to find several happy patients of his before spending money on it.

Just my 2 cents worth. I have 6 yrs of experience in referring people to LLMD's.