Jump to content
  • Sign Up

Archived

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

Rachel--24

Omg...i Might Be On To Something

Recommended Posts

I don't remember if band 30 was positive for me or not. I kept out my results for weeks so I could look at it every morning to see that I really tested positive! I finally filed it. Looking it up would mean walking into another room, too much for me LOL!!! :lol:

I think the controversy about band 30 just demonstrates that we really don't know for sure what it all means.

You're doing so much for your health right now. Even if you knew 100% for sure, you still couldn't be doing more. Hmm, are you exercising? :P I have read that exercise is essential for getting better. I remember reading in at least one place that a doc didn't think you could get better without it. Sometimes I get out of bed, go lift weights, then go right back to bed! Then I think how weird my life is!!

Share this post


Link to post
Share on other sites

Gosh you have to be quick to keep up on this board! haha. I do see why you guys call it Rachelville! And I do love your sense of humors. I'm glad to have joined the convo.

Rachel, I'm glad to be of assurance about the BioSET! It's been working wonderfully for me...but don't worry...it will work better once your lyme is under control a little more. Treatments don't stick as well when you have infections, bacteria, parasites, etc. And the woman I go to does detox pathways as well. It sounds like we both get treated in the same way. Good luck on foods :) Foods is the best category to be treated for, it's the most fun! My only advice to you though is to wait to try out foods until you go back for another treatment to see if the treatment for foods stuck. Also, I was a little dissapointed...I was sensitive to 91 out of 100 tested foods and all of the foods couldn't fit into one treatment so I kept having to go back. But I guess what im trying to say is just take it slow!

And yup, I'm actually taking Artemisinin too!!! Good research :) Does anyone know much about Babesia? I'm newly diagnosed and i can't seem to find all that much about it out there. It seems like you guys are expert researchers though! haha.

I was wondering...when you guys say "herxing", what do you mean? Is that like detoxing?

Share this post


Link to post
Share on other sites

LOL we are expert researchers! As you have probably learned, you have to take charge of your own health!! I ordered my Lyme test from IGenex, took it to my doctor and asked her to test me. I figured out on my own I had Lyme from Rachel and Rinne's talking on this board. Doc told me my illness was psychosomatic, but that she'd test me so I could get it out of my head. So, it's my own research and persistence that got me a diagnosis.

Yes, herx is a detox. They typically come every four weeks or so in someone with Lyme, though I don't cycle at all. When the bacteria dies off, it puts off toxins which make you feel bad.

Share this post


Link to post
Share on other sites

Rachel,

I have those saved over on a spreadsheet. I combined IGG/IGM and used the one with the most positives showing.

Rachel Rhonda Mia Carla Laura

18 kDa '- '- '+ '+ '-

22 kDa '- '- '- '- '-

**23-25 '- '- 'IND '+ '-

28 kDa '- '- '- '+ '-

30 kDa '+ '- '++ '+ '++

**31 kDa '- 'IND 'IND '+++ '-

**34 kDa 'IND 'IND IND 'IND '-

37 kDA - Mia only

**39 kDa 'IND 'IND 'IND 'IND IND

**41 kDa '++ '+ '+++ '+++ '+

45 kDa '- '- '+ '- '-

58 kDa '+ '+ '++ '+ '+

66 kDa '+ '- '- '- '-

73 kDa '- '- '- '- '-

**83-93 '- '- 'IND '++ '-

Share this post


Link to post
Share on other sites
I was wondering...when you guys say "herxing", what do you mean? Is that like detoxing?

Its the same as "die-off" or "healing crisis". Its when you start killing off bugs and they release toxins as they're dying....you actually get a worsening of symptoms during the "die-off". It basically means the treatment is working but you're killing off more than your body can actually handle as far as detoxing....so you kind of get "poisoned" by the toxins.

I'm excited about foods too!!! I actually have about 5 treatments for foods + a treatment for food additives. I reacted to over 300 foods....there was only about 60 foods that I didnt react to. :o The panels are pretty big. Just the mold stuff was three treatments for me.

Its cool because alot of the times as I'm touching the vials and reading the labels on them I can predict which stuff is really bad...because I know how my body reacts to alot of these things. I find the testing to be soooo accurate.

My Dr. actually used the BioSET testing to confirm in his mind that I have Lyme Disease. It was after I got my western blots and other test results back. The results were inconclusive on the western blots and positive on another test which is only 82% specific for Lyme....so not 100% sure it was Lyme.

The Bioset lady has a Lyme/co-infection panel and I reacted very positively to the antigens in the panel. Do you find the testing to be pretty "on the money" for you??

Dang....it seems like I have to have soooo many treatments compared to some others. I've already had over 15 treatments I think....and I havent even started on foods!

I still have to do heavy metals, thyroid/adrenals and Lyme/co-infectants.....other things will probably be added on after we're done and re-check everything.

Good idea about waiting on the foods to make sure they've cleared!! I think I'll do that too.

I'm really excited that you joined us here and that you seem to have so much in common with me.....also we are going through very similar treatments!! YAY!!

I have some info. on Babesia which I'll be back with. :)

Share this post


Link to post
Share on other sites

Before I forget.....

Carla....there is much info about the 41 band on LymeNET. Basically it can be positive for so many things from Lyme to gingivitis.

Here is a post I found....

I spoke with Dr. Nick Harris about the significance of band 41 a couple of days ago...

He said that 50% of the population would test positive for band 41, he also added that we have so many organisms within our bodies that have flagella, that band 41 is not a relaible diagnostic tool for Bb.

He also stated that bands 58 & 66 were not indicative of Bb.

When I was at Igenix I'm not sure who I taked to. Either Nick Harris or Stephen Harris....I dont know which one it was but he was very knowledgeable and I trusted what he said.

Share this post


Link to post
Share on other sites

Heres a couple sites with alot of info. about babesia and the other co-infections.

I've always read that the more co-infections you have along with Lyme the worse your symptoms will be.

http://www.canlyme.com/coinf.html

http://www.lymeinfo.net/coinfections.html

symptoms...

Babesiosis

Explanation: Protozoa that invade, infect, and kill the red blood cells

Symptoms: Fatigue, night sweats, fever, chills, weakness, weight loss, nausea, abdominal pain, diarrhea, cough, shortness of breath, headache, neck and back stiffness, dark urine or blood in urine

Treatment: Atovaquone (Mepron) plus Azithromycin (Zithromax), Clindamycin and oral Quinine

Other: Alternative treatment may include Riamet or Artemisinin

I've had all the symptoms except not too much abdominal pain or fever. No cough or diarreah either. I often have really dark urine and dont know why....I'm pretty sure blood was detected in my urine before as well. <_<

Did your Babesia show up in a bloodtest?

Share this post


Link to post
Share on other sites
Doc told me my illness was psychosomatic, but that she'd test me so I could get it out of my head.

Yeah...I remember that. She wanted to do some kind of voo-doo on you. She was saying it was because of "baggage" you were carring around. :rolleyes:

Did she ever find out you have Lyme??

Share this post


Link to post
Share on other sites
Rachel,

I have those saved over on a spreadsheet. I combined IGG/IGM and used the one with the most positives showing.

Rachel Rhonda Mia Carla Laura

18 kDa '- '- '+ '+ '-

22 kDa '- '- '- '- '-

**23-25 '- '- 'IND '+ '-

28 kDa '- '- '- '+ '-

30 kDa '+ '- '++ '+ '++

**31 kDa '- 'IND 'IND '+++ '-

**34 kDa 'IND 'IND IND 'IND '-

37 kDA - Mia only

**39 kDa 'IND 'IND 'IND 'IND IND

**41 kDa '++ '+ '+++ '+++ '+

45 kDa '- '- '+ '- '-

58 kDa '+ '+ '++ '+ '+

66 kDa '+ '- '- '- '-

73 kDa '- '- '- '- '-

**83-93 '- '- 'IND '++ '-

You're the best Andrea!!

Yeah....almost all of us are positive on 30. I wonder how specific it truelly is?? :unsure:

Share this post


Link to post
Share on other sites
Yeah...I remember that. She wanted to do some kind of voo-doo on you. She was saying it was because of "baggage" you were carring around. :rolleyes:

Did she ever find out you have Lyme??

Yeah, LOL. Last time I was there for the coinfections test she still hadn't reported it because she had questions for the lab about the Igg being positive but the Igm negative. She thought that meant it wasn't active ... so she wanted to call the lab. I told them it was different with Lyme, Igg or Igm either one needs to be reported. I haven't actually seen her though.

I would be shocked if I don't have babesia ... I have all the symptoms. I also get what looks like the bartonella rash (pustules).

Share this post


Link to post
Share on other sites

I was wondering if you guys ever get colds?? I hardly EVER get sick. I could never figure that out.....considering I've got all these problems. I dont have viruses or anything showing up in testing. The Bioset lady said my immune systems kicks butt. Yet....I have all these problems. :unsure:

Someone asked this question on the Lyme board and I thought the response made alot of sense

I've said this in the past and I'll say it again. When it comes to Lyme, there is nothing wrong with our immune system. The problem is the nature of Lyme. It resides inside of cells where our immune system can't get at it without attacking us.

If there is anything wrong in later chronic Lyme it is that the immune system is over active. It is not at all uncommon for us to not get sick, but still feel sick all of the time.

The healthier I get, the more often I catch a cold. My doc has said to me that no cold or flu stood a chance against my over active immune system.

It's over active because it is on constant alert. It knows there is something there that does not belong, but it just can't get or even find it. It's there for a flash then disappears inside of a normal cell.

Then why do we have other problems like yeast? Well, I think yeast can also become intracellular. But then there are also different parts to the immune system. There is the Th1 part and the Th2 part. They go after different things. Can't remember which ways, but one side can become over active while the other may be somewhat weaker, do to the over activity of the other side.

Do you guys feel like you're immune system is over active too....and you dont catch colds?? Obviously my immune sytem has freaked out on me and is fighting everything in sight (or out of sight) so this is a good sign?? :huh:

Share this post


Link to post
Share on other sites

ok I feel like I have so much to write-

rachel just tonight I was talking to my mom about egg sandwiches on english muffins- I actually just called her to read what you wrote and she was laughing.

I cannot wait to hear about how the treatments for food go.

I totally am with you on the holidays being sad. I hav ebeen very down- I was happy though that christmas turned out ok- but I think new years is going to be very emotionally trying on me- partly becasue it marks another year of being sick and becuse I got sick in january.

Ok So I had my docotr appt. and my lyme c6 peptide test came back positive- my doc says he had stopped giving this test because it almost always seemed to come back negative he was really suprised. So as of now the plan is that I have started (as of tonight )this meiciene for my motility issues. Starting next tuesday I am going to go into him 2 times a week for antibiotic shots- because he dosen't think I will be able to handle antibiotics orally- and than I will after two sessions do this urine test for lyme.

Ok there is more to write but that is a quick recap

Miamia

Share this post


Link to post
Share on other sites
I was wondering if you guys ever get colds?? I hardly EVER get sick. I could never figure that out.....considering I've got all these problems. I dont have viruses or anything showing up in testing. The Bioset lady said my immune systems kicks butt. Yet....I have all these problems. :unsure:

Someone asked this question on the Lyme board and I thought the response made alot of sense

Do you guys feel like you're immune system is over active too....and you dont catch colds?? Obviously my immune sytem has freaked out on me and is fighting everything in sight (or out of sight) so this is a good sign?? :huh:

Rachel-

this is so interesting since being sick I definitly get colds less often.

Overall because I take such good care of myself everything in terms of my liver and kidneys, calcium levels are all really good- All my doctors are always suprised that I can be so thin and so sick and yet everything is working so well.

Share this post


Link to post
Share on other sites
Ok So I had my docotr appt. and my lyme c6 peptide test came back positive- my doc says he had stopped giving this test because it almost always seemed to come back negative he was really suprised.

Miamia...yeah...the main problem with this test is that its not sensitive enough. Its only about 50% sensitive so that means there are ALOT of false negatives.

You have a positive! I will have to do some research to see how "specific" this test is for Lyme but I'm thinking that since you are positive, this combined with your Igenix Western Blot results plus your symptoms pretty much means Lyme Disease.

The urine tests also has alot of false negatives so even if you get a negative on that it wouldnt mean much since you already seem to have a pretty clear picture. I'm gonna look further into the c6 peptide test but I think at this point you dont need more testing. Is your Dr. not ready to diagnose you yet?

Share this post


Link to post
Share on other sites
I would be shocked if I don't have babesia ... I have all the symptoms. I also get what looks like the bartonella rash (pustules).

Is there any relationship between Dh and the bartonella rash? Are celiacs with DH (or gluten-intolerant people with DH) actually celiacs who also have babesia or Lyme?

Share this post


Link to post
Share on other sites
new years is going to be very emotionally trying on me- partly becasue it marks another year of being sick and becuse I got sick in january.

Funny about the egg sandwhiches!! :lol:

For some reason New Years doesnt get to me too much even though January was also the month that I got really sick. I was developing symptoms for a few months prior to that but got hit hard in January. I just go to bed early on New Years and by the time I wake up its all over with and I'm like...."Who cares?" :P

Xmas is really hard though. :(

Share this post


Link to post
Share on other sites
I was wondering if you guys ever get colds?? I hardly EVER get sick. I could never figure that out.....considering I've got all these problems. I dont have viruses or anything showing up in testing. The Bioset lady said my immune systems kicks butt. Yet....I have all these problems. :unsure:

Someone asked this question on the Lyme board and I thought the response made alot of sense

Do you guys feel like you're immune system is over active too....and you dont catch colds?? Obviously my immune sytem has freaked out on me and is fighting everything in sight (or out of sight) so this is a good sign?? :huh:

I haven't had a cold or virus (that I know of) for 2 years now. Of course, now that I've put that in writing, I'll get sick tomorrow!!

Share this post


Link to post
Share on other sites
January was also the month that I got really sick.

What is it about January that makes us all sick? I developed that DH rash in January, and the year before that, I had bronchitis and pleurisy in January. What the ????? is it with January?

Share this post


Link to post
Share on other sites
Is there any relationship between Dh and the bartonella rash? Are celiacs with DH (or gluten-intolerant people with DH) actually celiacs who also have babesia or Lyme?

I never looked at the Bartonella rash so not sure if it looks like DH??? I used to get little blistery rashes but not in a long time....actully not since I've changed my diet and went gluten-free. :huh:

I think the DH rash is totally seperate from Bartonella rash. When DH is biopsied they check for anti-gliadin antibodies if I'm not mistaken?? Its definately related to gluten consumption. I'm sure there could be "confusion" or misdiagnoses of rashes from various diseases but DH is caused by gluten.

Share this post


Link to post
Share on other sites
Is there any relationship between Dh and the bartonella rash? Are celiacs with DH (or gluten-intolerant people with DH) actually celiacs who also have babesia or Lyme?

They look the same. For a long time I thought I might have DH, but it never went away when I was 100% gluten free. I've been gluten-free for a year now, but the rash still comes and goes.

Rachel, I USED to get sick all the time, now I NEVER get sick. With six kids, that's weird! We've had several colds go around, but I've not gotten any.

Share this post


Link to post
Share on other sites
I never looked at the Bartonella rash so not sure if it looks like DH??? I used to get little blistery rashes but not in a long time....actully not since I've changed my diet and went gluten-free. :huh:

I think the DH rash is totally seperate from Bartonella rash. When DH is biopsied they check for anti-gliadin antibodies if I'm not mistaken?? Its definately related to gluten consumption. I'm sure there could be "confusion" or misdiagnoses of rashes from various diseases but DH is caused by gluten.

There are two different bart rashes, one looks like stretch marks, the other looks more like DH.

Share this post


Link to post
Share on other sites
Did your Babesia show up in a bloodtest?

Actually my babesia showed up in BioSET...and I also had other alternative medicine type testing done where babesia showed up.

You asked if I thought the BioSET was "right on the money"...and i've had some experiences where it really has been. It's always done wonders for my allergy with dairy, but as for the actual testing and what it finds...I feel that it's very accurate for it's readings on my Candida...and it also found H Pylori, which was found in my blood tests. One time it also showed up that there was a problem with my tonsils, and it was completely accurate because I had a sore throat that day.

Thanks for all the information on Babesia! So you think you all have it too? My biggest symptom out of all the symptoms that I have in general is severe constipation (I know, T.M.I. right? haha. but im so used to talking about it by now.) does anyone suffer from that? If I don't take high doses of magnesium-oxide, I don't go for about 2 weeks, maybe even three if it's really bad. What your guys' worst symptoms? You guys say that you think you might have Babesia too...what kind of symptoms make you think that? I get the headaches, the night sweats, the fatigue...then randomly I'll get spurts of diarreah.

This would be lovely dinner conversation, wouldn't it?

Share this post


Link to post
Share on other sites
What is it about January that makes us all sick? I developed that DH rash in January, and the year before that, I had bronchitis and pleurisy in January. What the ????? is it with January?

Stress was playing a big role in triggering my symptoms. I was having symptoms prior to January but all he** broke loose in January.

My old Dr. told me that alot of people get sick after Xmas...they catch colds or whatever. Just in general more people tend to get sick right after Xmas because of the stress they went through preparing for the holiday. Stress brings down the immune system.

I had alot of stress that Xmas because it was the first one that I hosted at my home....plus I had relationship dificulties. My symptoms started getting out of control right at Xmas time.

Its just a guess but it could be the stress of the holidays triggering illnesses that have been "dormant" prior to the stress.

Share this post


Link to post
Share on other sites
This would be lovely dinner conversation, wouldn't it?

:lol::lol:

Hmmm...Babesia and Erchilia (sp?) both showed up in my Bioset testing but not in the bloodwork. Thats why I want to retest later....because I'm told the co-infections are difficult to test for....same as Lyme. Also there are 13 strains of Babesia and they only have tests for 2 of the strains.....so the Dr. has to treat for it based on symptoms if its not showing up in tests.

I have a really stiff neck and sometimes back. I *used* to have constipation but not anymore. I'm pretty regular as long as I'm not eating stuff that causes too much problems. Once I ate cheese and didnt go for almost 3 weeks!! Of course....I overdid it a little and ate like a whole block of Swiss in 24 hours. :ph34r:

I never really get diarreah. I have extremely dark urine some days for no reason.....I eat the same foods everyday. :huh:

I *always* have headaches....ever since I first got sick....it was one of my first symptoms. In the beginning they were VERY bad. Also night sweats were bad in the beginning....like buckets of water were poured on me. I would wake up soaked...all of my bedding, my hair, my clothes...everything. It was pretty crazy. I dont get them like that anymore and havent for maybe 2 years now.

I'll still get mild nightsweats but only if I eat something I really shouldnt eat.

By far my WORST symptom is this.....

Many Lyme disease patients have acquired attention impairments which were not present before the onset of the disease. There may be difficulty sustaining attention, increased distractibility when frustrated, and a greater difficulty prioritizing which perceptions are deserving of a higher allocation of attention.

If we compare attention span to the lens of a camera, we need the flexibility to constantly shift the allocation of attention dependency upon the current life situation. For example, we shift back and forth between a wide angle and a zoom lens focus to increase or decrease acuity of attention depending on the needs of the current situation. A loss of this flexibility results in some combination of a loss of acuity (hypoacusis), and/or excessive acuity to the wrong environmental perceptions (hyperacusis). Hyperacuity can be auditory (hearing), visual, tactile (touch), and olfactory (smell).

Auditory hyperacusis is the most common. Sounds seem louder and more annoying. Sometimes there is selective auditory hyperacusis to specific types of sounds. Visual hyperacusis may be in response to bright lights or certain types of artificial lighting. Tactile hyperacusis may be in response to tight fitting or scratchy clothing, vibrations, temperature and merely being touched may be painful. Some patients prefer to wear loose fitting sweat suits and are frustrated that being touched can be painful.Olfactory hyperacusis may result in an excessive reactivity to certain smells, such as perfumes, soaps, petroleum products, etc.

I have super hyper sensitivity to smells. Its crazy....like almost super natural. :blink:

Its not a symptom of Babesia though. Its from the Lyme. I've also had extreme sensitivity to light....mostly in the first year though. It caused excruciating pain. :(

I dont have problems with sound though....alot of people seem to get sensitive to sound.

Share this post


Link to post
Share on other sites

Symptoms: Fatigue, night sweats, fever, chills, weakness, weight loss, nausea, abdominal pain, diarrhea, cough, shortness of breath, headache, neck and back stiffness, dark urine or blood in urine

Peace, these are the symptoms that Rachel listed, except for the blood in urine, I have all of them. Fever isn't too frequent. All the rest are bad -- fatigue, night sweats, chills, weakness, weight loss, nausea, diarrhea, cough, shortness of breath, neck/back stiffness -- are the worst. I have so much trouble breathing sometimes that I was tested for asthma. I realize now that my shortness of breath is a failure to breath out enough air, not breath in enough air, so I can control it better when I get it.

Share this post


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

×
×
  • Create New...