Jump to content
  • Sign Up
Celiac.com Sponsor:


Celiac.com Sponsor:


Archived

This topic is now archived and is closed to further replies.

Rachel--24

Omg...i Might Be On To Something

Recommended Posts

I just got off the phone with my friend who was just diagnosed with Lyme Disease. She had taken her daughter to a pediatric Lyme specialist in Conn. because she wash having major health issues and they had found a tick on her. The doctor said that one tick bite that recently could not have caused the level of disease that she had and started asking my friend questions about her own health, which has been bad since she was in HS. The doctor said he thought the daughter got the Lyme in utero from the mother and that she needed to see a specialist in NY. This specialist diagnosed my friend before the blood test, but used Igenex ... the results aren't back yet, but he's positive she has it. She wasn't home, but when she gets home she's going to give me this guy's number. Looks like I finally get to go to NYC! I have a friend up there, and the doc is about an hour north.

What a funny/strange coincedence. We've been sharing the same health issues for years ...

I think I'm just as excited for you as I was when Rachel found HER Lyme doctor, lol!

Share this post


Link to post
Share on other sites
When I was done you know what she said??

"Thou shalt be quiet now and thou shalt go pay your bills!" :blink::angry:

Okay, the emphathizing friend: Gosh, Rachel, that's awful of her to say. The not so emphathizing friend: Sorry, but that was just funny! :lol:

Share this post


Link to post
Share on other sites

Another story in the newspaper is about a woman sick with CFS for 8 years. She was basically debilitated by the "chronic Fatigue Syndrome". Finally she learned about Lyme....got tested but was NEGATIVE. The Dr. treated her regardless based on history and symptoms and because she lived in an endemic area. After 4 months of antibiotics she was retested and came back POSITIVE.

This is often the case....a negative will become positive after treatment with antibiotics. The explanation is this. Those who are the sickest most likely have the heaviest load of the Lyme Bacteria. Many times ALL of ones antibodies are tied up to these bacteria in immune complexes. When the bacteria begins to be killed of, this frees up some of the antibodies which can now be measured. So....in other words...its often those who are the sickest and chronically ill who test negative for Lyme Disease when using antibody testing.

Another happy ending.....this lady got her life back. :D

This is why I'm sort of happy that my test was positive because it means that I still have antibodies which can be detected. :) I think its a good sign??

Share this post


Link to post
Share on other sites
Rachel, so if they've found it in sperm, I wonder if women can pass it to men?

I dont know. All I know is that the BioSET lady told me all of her Lyme patients are very careful with their partners because they know all they've been through and dont want to risk getting their partner sick. She did say that if the partner has a strong immune system they may never actually get sick with Lyme. I think it has everything to do with the load of Lyme bacteria a person is dealing with AND the state of that persons immune system.

I just dont know how common this would be because it obviously doesnt spread to spouses in most Lyme cases. Also...I've read that when a spouse gets Lyme symptoms they are assuming they got it sexually from their partner who HAS Lyme. I think its also highly possible that they could have also gotten Lyme from a tick bite since husbands and wives travel together, camp together, hike together....whatever. Just because one person develops their symptoms later on does not PROVE (to me anyway) that it was transferred sexually. Its possible they were bit by a tick....and developed symptoms later. Its also possible that they were infected by a tick and more bacteria was transferred sexually.....which contributed to that persons "total load". I dunno.....just throwing stuff out there. :huh:

Share this post


Link to post
Share on other sites

Rachel, Remember when I contacted Becky for you about Lyme? She said it was sexually transmitted. Her husband got it also.

Share this post


Link to post
Share on other sites
I dont know. All I know is that the BioSET lady told me all of her Lyme patients are very careful with their partners because they know all they've been through and dont want to risk getting their partner sick. She did say that if the partner has a strong immune system they may never actually get sick with Lyme. I think it has everything to do with the load of Lyme bacteria a person is dealing with AND the state of that persons immune system.

I just dont know how common this would be because it obviously doesnt spread to spouses in most Lyme cases. Also...I've read that when a spouse gets Lyme symptoms they are assuming they got it sexually from their partner who HAS Lyme. I think its also highly possible that they could have also gotten Lyme from a tick bite since husbands and wives travel together, camp together, hike together....whatever. Just because one person develops their symptoms later on does not PROVE (to me anyway) that it was transferred sexually. Its possible they were bit by a tick....and developed symptoms later. Its also possible that they were infected by a tick and more bacteria was transferred sexually.....which contributed to that persons "total load". I dunno.....just throwing stuff out there. :huh:

That makes sense, I guess you would never know ... siblings can both get it because they play together in the same places, seems that that would apply to spouses, too. Just seems that biologically, it would be more likely for man to pass it to a woman than vice versa. :) Adam doesn't seem to have the symptoms, and I don't think people would consider us "careful" :lol::lol:

Rachel, Remember when I contacted Becky for you about Lyme? She said it was sexually transmitted. Her husband got it also.

Hmmm.

Share this post


Link to post
Share on other sites

Sorry, had to take a quick break there...I can feel my mouth again so rushed to brush my teeth, lol. :lol: Today was my second quadrant of amalgam removal. Upper right side...they had to give me 4 numbing shots and let me tell you the one in the front and roof of my mouth hurt, lol. Also hurt like heck...air/metal/water combo. YIKES, doesn't matter which tooth, that combo sends me through the roof even numbed to high heaven. Strange, my upper lip is hanging down...I thought it was because I was numb, but all that is wearing off now and it's still hanging a bit. Really hope that goes away. :P Otherwise Donna may not = :lol: any more and may look more like ;)

I so totally upset by the treatment of lyme. I don't know if I have it, but I would like to think that when I get tested, I could be treated if I needed to be. It's ridiculous that they put limits on treatment. I just don't understand it. I mean we'd be spending money on drugs, you'd think that would be enough to get them to treat us as long as it took.

Share this post


Link to post
Share on other sites

Dr. Klinghardt

Klinghardt talks about the number of people who may have the disease but are not manifesting any symptoms or symptoms being identified as Lyme. I've posted this same link before for anyone who has already looked at his Lyme Protocol.

I think that with proper nutrition and a healthy lifestyle it may be possible not to trigger the Lyme to the same extent or so early as in that small child. Yeah for Grandmothers!!! Thanks for sharing that story Rachel.

Share this post


Link to post
Share on other sites
I so totally upset by the treatment of lyme. I don't know if I have it, but I would like to think that when I get tested, I could be treated if I needed to be. It's ridiculous that they put limits on treatment. I just don't understand it. I mean we'd be spending money on drugs, you'd think that would be enough to get them to treat us as long as it took.

Really!!! :D

Share this post


Link to post
Share on other sites
Strange, my upper lip is hanging down...I thought it was because I was numb, but all that is wearing off now and it's still hanging a bit. Really hope that goes away. :P Otherwise Donna may not = :lol: any more and may look more like ;)

Whew, aren't you glad that part is done.

I do hope you still = :lol: once you've gotten over the numbing stuff completely.

Share this post


Link to post
Share on other sites

Check this out!! This is the best news that I've been wanting to share. :)

Last night the BioSET lady was working on some brain stuff that I was having difficulties with (according to the testing). The stuff involved in my treatment last night was stuff like TSH (thyroid stimulating hormone) and some brain transmitters (I think Dopamine (sp?) and some other stuff I cant recall). She said my body isnt getting the right signals with these things...so basically these things are out of whack I guess.

Anyway..she started me on B-12 since last week I got treated for all the B-Vitamins and some other stuff. I also ate an egg today. :) I'm suppossed to be able to eat sulfur foods now.

Sooooo... the good news is that she said now she's gonna start working on the chemicals! This is what I'm ALWAYS complaining about....my reactions to chemicals. She said she was excited to hear my comments when I start noticing I'm not reacting to the chemicals as much. :D She said shes gonna start next week. I'm excited but I also dont know if the treatments will "hold" since I'm still obviously sick from Lyme or whatever else. I think its possible the treatment can easily get reversed since I'm still really toxic. We'll see what happens though. :D

I asked why I'm reacting to the chemicals.....is it an actual immune response or is it because of my body's inability to detox and stuff just building up inside me? She said that its both....my body cant detox fast enough so the more I am exposed to chemicals and the longer those chemicals are accumulating inside me....just "hanging around"...eventually my immune system freaks out and starts reacting to these toxins that shouldnt be there.

She said that basically at this point my immune system thinks that pretty much *everything* is the BOOGEYMAN. Its trying to protect me from all these things because they are hanging around too long in my toxic body. She said shes gonna get me to the point that my immune system *forgets* all of these things and doesnt think they are the BOOGEYMAN anymore. So that when I eat something like an egg....my immune system isnt gonna get into a frenzy going "OMG...SULFUR....SEND OUT THE ARMIES!!"

So basically...it will stop attacking all of these innocent and even beneficial things. :D

I really hope these treatments work...its really exciting if I start to notice improvements. She said that once my immune system isnt reacting to all the innocent things....it will have alot more energy to focus on the REAL Boogeyman's....like the Lyme. :D

Right now it seems hard for me to believe I can *stop* reacting to chemicals....but we'll see what happens.

She also said that when she starts the treatments for the chemicals I'm probably gonna be really tired after the treatments....so might just want to sleep afterwards. So if I dont get online after my next treatments..I'll probably be sleeping. :)

Share this post


Link to post
Share on other sites

Rachel,

Woohoo, Yipee!!!!

That's great news. Are your appointments Tues and Thurs?

Did you have your half egg on Sunday? How'd that go if you did.

Share this post


Link to post
Share on other sites
Anyway..she started me on B-12 since last week I got treated for all the B-Vitamins and some other stuff. I also ate an egg today.

I am just so excited about these sessions! Great about the chemicals and all, but heck I REALLY excited that you ate an egg. :lol: AND got B-12. :lol:

Share this post


Link to post
Share on other sites

I think there is much to be said for a really healthy immune system. My husband is not ill, he is pretty much the same guy healthwise I married twenty years ago. He has also spent time at the same place in Colorado that I have and where I was bitten.

Rachel, I think it will be interesting to see what my results from Igenex are because I suspect that I have had Lyme for a very long time, as I've said before I think it was the last bite that just tipped me into ill health. I had read that people who have had it the longest may not test positive for it, stealthy isn't it?

Judy, I've read that 70% of people are treated successfully with immediate anatibiotics but that leaves 30% who have Lyme come back in different ways in the body, with your health problems it does seem very possible. :(

I wonder if a positive change may come out of the pressure on doctors to not treat Lyme in that people may begin to realize that they have to take charge of their health and that there are alternatives. The salt/vitamin c treatment for Lyme is working for many people, it may take longer and needs to go with other changes but there is hope there. The other road seems like a never ending cycle of antibiotics and supplements and recoccurences of Lyme. :(

Rachel, that is great news.

Share this post


Link to post
Share on other sites

Rinne,

Glad your hubby is ok. I'm waiting anxiously for your results along with you.

Share this post


Link to post
Share on other sites
Rachel, Remember when I contacted Becky for you about Lyme? She said it was sexually transmitted. Her husband got it also.

This is what I'm wondering about though. How can she be 100% certain that the Lyme was transmitted sexually? Did she already have Lyme before she met him? If they were already together once she got Lyme couldnt he have also been infected from the same place she was infected. If she was exposed to ticks carrying Lyme...there is a big chance he was exposed right along with her....unless of course they werent yet a couple. I didnt get sick until 2 years after I got bit. Some people go much longer before they show symptoms......if he developed symptoms long after she did....it doesnt necessarily mean he wasnt infected all along.....or that he must have gotten it from her. I had no idea I had Lyme...I only had flu-like symptoms for a couple days and then was perfectly healthy and normal for 2 whole years. I think it happens like this for alot of people so I'm just not 100% convinced when a spouse gets symptoms of Lyme that it was sexually transmitted.

I'm not saying it cant happen either....I'm just saying there is no concrete evidence at this time.

That's great news. Are your appointments Tues and Thurs?

Did you have your half egg on Sunday? How'd that go if you did.

Yup...Tues and Thursday...so I cant forget or get mixed up. :wacko: Although I couldnt get my normal time so now I've already forgotten the new times. :huh: Stupid brain fog.....I need everything written down for me.

I didnt eat an egg until today....I know she said to only eat half but guess what??? :ph34r:

Yeah...I Racheled the egg. :rolleyes:

Share this post


Link to post
Share on other sites
I didnt eat an egg until today....I know she said to only eat half but guess what??? :ph34r:

Yeah...I Racheled the egg. :rolleyes:

:ph34r::lol:

Hadn't she said to eat a whole egg later in the week if you did ok with the 1/2?

Write down your appointments and times....pm me and I'll call you to remind you. By pm'ing me it could help you remember the times as you'll be looking at it more. I like set times too though, that way it can become a habit.....which is a good thing until she's done with you....then you'll show up at the appointed time and she'll go :huh: and you'll go :blink: .

Share this post


Link to post
Share on other sites

Donna,

YAY about getting more amalgams out. :D

Ummmm....hopefully you are not still lopsided. :)

I wonder if its the same Dr. Adams that removed mine?? I'm still baffled by the whole retirement letter I recieved. :huh: I mean...I was still eating gluten and everything else at the time but I dont think I was totally delusional. :unsure:

Is it the guy in the pic on his webpage? An older guy who maybe *looks* like he might be able to retire??

:ph34r::lol:

Hadn't she said to eat a whole egg later in the week if you did ok with the 1/2?

Write down your appointments and times....pm me and I'll call you to remind you. By pm'ing me it could help you remember the times as you'll be looking at it more. I like set times too though, that way it can become a habit.....which is a good thing until she's done with you....then you'll show up at the appointed time and she'll go :huh: and you'll go :blink: .

:lol::lol:

Ok...I gotta ask about my new times when I go tomorrow.

Yeah....she did say to wait a week until I ate a whole egg. I dunno what happened :huh: ....I think the egg was too small. :ph34r:

Share this post


Link to post
Share on other sites

Rachel,

They were married when all this started with her. I believe they were together when she thinks this happened to her. She is under the impression that she gave it to him.

Share this post


Link to post
Share on other sites
....I think the egg was too small. :ph34r:

:lol: Yah, I agree. I mean who can have just one egg as far as I'm concerned.

Share this post


Link to post
Share on other sites
Rachel,

They were married when all this started with her. I believe they were together when she thinks this happened to her. She is under the impression that she gave it to him.

It might have not happened that way...he could have been infected by a tick and unaware of it.... like what happened to me. She could have gotten sick quickly and he could have gotten sick much later.....like me. Theres no way to really know for sure.....like so many other things. From what I've read and from what the BioSET lady told me it sounded like they are *thinking* that Lyme is sexually transmitted because of people's testimonies.....that they believe they have caught it from their spouse. I think they need more scientifness on this though....since symptoms can take years to develop....its hard to determine where exactly the Lyme came from.

Share this post


Link to post
Share on other sites
Um, ahem, would just like to clarify that it was our dear Patti who used the word Conundrum. :D And yes, that is a good wine. :P

I didn't want to mention this before.....but C. Diff does kill one-third of patients who get it. :( Yes, I am beyond worried too....Judy I know you'll let us know as soon as you hear anything.

And, the reaction to antibiotics is FAR higher than 1 in 400,000 - - - the numbers are shocking, actually, for the particular one that my friend's daughter was on....it is so common and I have forgotten the name....there are huge lawsuits against the manufacturing company. :o

Quick drive-by...

That C-Diff kills, I had no idea. I suppose it would be even worse in older patients and the chronically ill. I went through heck battling it this summer and i'm 39. I can see how that would happen. Yikes, now I'm even more worried about evie.

Alos, Susie Q, I just used a random number as an example. It's just that statistics get thrown around so often that people forget that in most cases, they're not numbers. They are people with lives and families and friends. I hope I didn't upset you. :(

Share this post


Link to post
Share on other sites
Judy,

I would be concerned mainly because of all the health troubles you've had. A bulls-eye means that you have gotten infected with Lyme....even if the bloodtest is negative. Thats why they ALWAYS give antibiotics when there is a bulls-eye. They "assume" that 3 weeks will do the trick but this is not ALWAYS the case and its been proven over and over again that 3 weeks is not always enough....because of the way the Lyme bacteria can evade the immune system and the antibiotics. Also been proven over and over that those tests are no good. Igenix has the best test for Lyme but still not 100%. Lyme is very hard to diagnose.

I did not know that you had 4 bulls-eye's....thats alot. :blink: I would definately get an Igenix test. Do you still have unresolved symptoms going on??

Judy....were you sick before the bulls-eye rashes? Did you ever get fever or anything like that any of the times that you had the bulls-eyes?

It's been so long Rachel i can't remember.

What i can remember was back in mayby 1995 got the flu so bad was in bed for week in 1/2 jim out of town and thought i would die. after that the fibro..so with everything else going on and surgeries etc. all gets mixed up in my mind.

thanks for the post.

judy

Share this post


Link to post
Share on other sites
Guest
This topic is now closed to further replies.

  • Celiac.com Sponsor:

  • Forum Discussions

    I am a healed celiac (repeat biopsy confirmed) and I drink red wine on occasion.  No gluten reactions.  I do not drink it on a regular basis because it triggers my facial Rosacea which is probably due to the tannins found in red wine (grape sk...
    Never went to a "gym" always felt on edge there and only used hotel ones at 4am when no one else was. What  invested in a few years after I got diagnosed was a set of resistant bands, a stationary bike (late got a under desk elliptical,...
    Think I just had a serve response to some red wine I drank last night, severe cramps, bloating, etc. I have never had a reaction like this to red wine, a new bottle I’ve never tried before. Has anyone had a gluten reaction to red wine? ...
×
×
  • Create New...