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Rachel--24

Omg...i Might Be On To Something

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I hope antibiotics work for you but much of what I have read seems to indicate it is more successful in early stage Lyme and not so much for late stage or that for late stage Lyme people are talking about spending up to 4 years on antibiotics. :(

I'm starting to think that the antibiotics arent working well for people with late Lyme because at that point there are many other things bringing down the immune system as well.

Sure they would work great in the beginning but the Lyme is not yet chronic and the immune system isnt totally dragged down. I think to expect to *just* take antibiotics and get well is pretty far-feteched.

There are likely Lyme co-infections, candida, maybe some parasites, heavy metals, food and environmental allergies, etc...just a whole bunch of other issues to deal with. If you have some of these issues and dont address them....the immune system will continue to be dragged down by them. So you could take antibiotics forever but if you're immune system isnt strong you probably wont recover without addressing the other issues. I could be wrong but it makes sense to me.

Also with co-infections and at least 300 different strains of Lyme bacteria...you dont know from the start which antibiotic is gonna be most effective.

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I have to go to the orthodontist, so I have to keep this short ... I agree that antibiotics aren't a complete answer. I see them as part of the picture though. I think it is a composite of things that make us so sick for so long ... I've done the natural stuff for years, and it's remarkable how close the supplements I've been taking are to the ones recommended for Lyme. But I think that antibiotics can be part of the picture. Right now I don't feel any better ... at all ... doing the salt/c and sauna. I still think it HAS to be good though. I'll talk to the doc about all of it. My friend who's seen him says he uses natural stuff and antibiotics, a balance.

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This is an interesting article on detoxification. They specifically mention mercury and heavy metals, among other things.

Another site bookmarked. :)

I'm caught up but not entirely back, still very tired today.

Get some more rest Rhonda. I'm sorry you got minorly glutened. :(

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Rachel, can you add salt and saunas? I'm just thinking, I had 8 positive bands, and I thought it would be negative considering how long I've been sick ... the salt and saunas MUST have helped my immune system.

I can do saunas....I used to do them everyday....sometimes twice a day. I loved it. I'm gonna start going again. I had to find my membership card last weekend. I have it now. :)

I'm not gonna mess with the salt though.

The Igenix guy had said that my Dr. isnt as comfortable with antibiotics as the other Dr. is. I know for sure the other Dr. is excellent....she's very well known for treating Lyme in this area.

This is her....

http://www.latc.com/2006/06/21/special_sec...cial_sect1.html

The only thing is that I'm pretty sure she is full-time LLMD whereas my Dr. knows alot about mercury and the other things....that can go along with Lyme. I'm not sure she would address any of those things.

I think the Better Health Guy that I met uses both Dr.'s for seperate things. He doesnt use my Dr. as his main LLMD. I think it could get really expensive if I were to see both of them but I can get an idea about this if I contact that guy again.

I know my Dr. isnt anti-antibiotics because he's mentioned using them a few times now...he just doesnt want to use them YET. I think he is more catious with them than some Dr.'s are.

I know for sure that I wouldnt want a Dr. who wont use antibiotics at all. I think a combination of natural stuff and antibiotics is better than choosing one or the other...they both have benefits.

I've been reading about the urine test the Igenix guy gave me. It sounds like you definately need to take antibiotics before this test. The purpose of the test is to detect dead particles of the bacteria.

I dont know if the samento is gonna be strong enough to do this and the test has many false negatives as it is. I'm only gonna take this test if I take antibiotics first.

Igenix gave me a paper with a couple of protocols that can be used...the first is by Dr. Burrascano.

Both protocols only call for a short time on the antibiotics...1-5 days. I think I can handle it considering I was on Flagyl for 2 weeks at the beginning of the year and I survived....I didnt get any worse. My Dr. had me taking lots of probiotics so I'll do the same thing again.

It seems like its kind of pointless to do this test without antibiotics.

I gotta go back into my old threads to see what I was writing about while I was on the Flagyl. I dont remember and I'm not sure if I even posted much back then but I'd be curious to see how I was feeling from day to day.....for those 2 weeks. I know it wasnt easy and I missed one day of work.

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Hello :)

Laura and rinne, sending good thoughts your way. Hope you guys take good care of yourself, feel better soon :)

Rachel interesting you bring up the HHV-6, I found some research connecting the active HHV-6 virus with acquired angioedema, which I have been struggling with for so many years:

http://www.immunesupport.com/library/print.cfm?ID=3052

Could it be that this virus in its active state could be responsible for our illnesses?

A word about things showing up on the bioset/bioscan, it is my understanding that sometimes they hide behind other things, like in the case of lyme. I was treated by one of the top bioscan MDs from Fla and this is what he told me. I will have to look into that further and ask more questions to be able to give more thorough scientificness....but, I think the onion thing comes back inot play here, as you unpeel things and clear things you can get to the root or the clear picture of what is going on.

Hope you are doing well and hanging in there, I know this is not easy.

Carla, you too. Just hang in there :)

:wub: to everyone!

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Yep, good to be back.

Hopefully things will go smoothly with this upgrade. Does anyone else have problems viewing new posts. On my computer the header bar splits at "blog" and blocks the view new posts line.

I've had to hit reply on a topic just to see view new posts.

Anyway, I'm doing good and looking forward to everyone coming back on and Donna getting home this weekend and back with us full time again.

Laura,

Have you been able to do your caffeine test again or are you supposed to take more of a break to get everything out of your system first?

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Where's Miamia been??????

I need to go see last time she was online. She hasn't posted here since the 6th. :(

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Could it be that this virus in its active state could be responsible for our illnesses?

Julie...I dont know much about the HHV-6 but my Dr. said that its a past infection....not active. Did you test positive for HHV-6?

I'm gonna ask my Dr. to explain it more at my next appt. I'll also ask the Bioset lady to check into it if she can. I'm not gonna worry about it too much though....I dont really think its causing my illness but I'm gonna find out what I can.

My #1 problem is the food and environmental sensitivities. I'm very sure that if I was in a "pure" environment I would be totally symptom free.

At times it might *seem* like I have alot going on....fatigue, joint pain, brainfog, blurred vision, memory problems, numbness/tingling, etc. I could be diagnosed with just about anything with those symtpoms. This is why I'm not 100% satisfied with the Lyme diagnosis. Yeah....it can be a clinical diagnosis but those clinical symptoms can be caused by so many things. I need more proof.

Maybe this is why some people with Lyme dont get better with antibiotics?? Maybe the Lyme DOES get better but the symtpoms are still present cuz of something else and the symptoms overlap the Lyme symptoms??

I dont want a clinical diagnosis at this point.

Thinking back to when a guy on another board first emailed me about Lyme...suggesting I look into it. I had just started the Candida diet and had experienced some dramatic changes in my health. I had asked him if it were possible to have this much recovery simply from diet changes. Could all of my Lyme symptoms go away or improve considerably just from changing my diet??

His answer was no...that he didnt feel it was Lyme...if I improved that much on the diet it was more likely Candida.

It sticks out in my mind that my symptoms seem to be directly from what I eat or breathe. The past 2 months with my very restricted diet of only 5 foods...I have only had very minimal joint pain. When I ate the frozen waffles and Amy's dinner....I got some swelling and joint pain.

It leads me to believe that Lyme isnt the main cause of my symptoms. I suppose it could be a low grade infection that is suppressing my immune system but like I told the Bioset lady last week....I do NOT feel like I'm "crippled" by Lyme...I feel like I would be totally normal if it werent for my insane sensitivities.

I figured out a few months back that I cant do grains...I felt very sure that it was molds I was reacting to. I kept having a problem with brown rice....I have never found a cereal I could tolerate. Everytime I ate Tinkyada pasta I had pressure in my head and swelling....even worse with the organic bags. The only possibility was mold or an intolerance to rice in general......but I felt certain it was mold.

I cant have any nut butters but especially peanut butter. Last time I had some it was disatrous with all symptoms flaring up, major bloating, pain, blurred vision and I was burping up a nasty taste for about 24 hours non-stop. It happens to a lesser degree with all grains....especially corn. When I was eating corn tortillas I had bad headaches everyday.

One day my tortilla had a moldy smell to it but it looked fine.... I ate it and my symptoms got really bad. I later noticed that there were some other tortillas in the bag with obvious mold on them. This is when I decided I cant eat anything that is high in mold content. There was a definate connection between foods high in mold and an increase in my symtpoms.

At my first Bioset appt. she said I had a major candida problem. The testing showed I reacted to all the molds and mycotoxins. It was the category I had the poorest response to....the molds, yeasts and mycotoxins. She had commented on how badly I reacted to yeasts and molds at that first appt. but we hadnt yet reached this category in my treatments....until last night.

So all of the vials in the tray contained mycotoxins.

For anyone that doesnt know what mycotoxins are....

http://www.scienceinafrica.co.za/2002/december/food.htm

http://www.botany.hawaii.edu/faculty/wong/BOT135/lect11.htm

My body did not respond well to any of these vials. By now I'm used to the sounds and I can see how I respond on the computer screen while shes testing me. If my body is OK with something the sound is a strong higher pitched sound....if my body doesnt like something its more of a dull sound. There is a bar on the screen and if my response is good the bar goes to a high level....if my body doesnt like something the bar doesnt go up as high.

For the mycotoxins testing my response was probably the poorest I'd seen yet. For ever single vial there was the dullest sound and a very poor response on the computer screen....the bar wasnt going up hardly at all.

The Bioset lady noticed right away how poor my response was and after the first row of vials she said that we were gonna need TWO glasses to hold all of the vials. She said she thought I was gonna do poorly with the whole tray and I did....we needed both glasses and they were both full.

She showed me how poorly my resonse was to the mycotxins by testing me without my finger touching anything...the sound was high and the bar went all the way up. She said "that was just you...you respond well ...but now touch a vial." I did and the response was totally draged down. A dull sound and the bar hardly going up.

The mycotoxins are playing a huge part in my illness.....she said this is really a serious problem going on. She doesnt know if its the "main" problem or just another small layer but she said it was a pretty BIG thing thats going on with me. After what happened with the mycotoxins she wanted me tested for antibody titers. They did a blood draw but I wont get the results till after Christmas.

She said shes seen some people come back over 9000 (I dont know the reference range) and she thinks I might be one of those people. She said the results should give her a better idea of whats going on with my immune system.

There is alot more to tell....we talked about onion layers, Lyme and other stuff but I have to go back to work now. :(

Be back later...

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I didn't know the board was going to be down!!!

Rachel, I felt much better on the anti-candida diet, too. I had terrible joint pain ... it was so bad in my left knee that I couldn't bend it. If I sat down, it had to be propped up. If I went up or down stairs, I had to do it one stair at a time like toddlers. The joint pain went completely away on the anti-candida diet. I was actually thinking about going on it again because I felt so much better.

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Rachel, onion layers.....I think you are right about more going on. After all, I think that intuition is very important--and if you "feel" that there is more to this for you, then there probably is. Lots of people don't listen to their bodies--but you do, so these feelings are valid.

I found your food reactions to be very similar to mine. The rice, specifically Tinkyada--I get the same thing, along with cramping and loose stools. I also do not eat any cereals, as I have spent tons of money on ones that don't agree with me.

Nut butters, too. Legume intolerance (which I do have) would explain the peanut butter--but what about Almond butter? That caused me almost immediate dirrheah (how the heck do you spell that word :blink: ). Also, we share coconut <_<

I've been under the impression that mine are a result of leaky gut--as all of my problem foods are plant proteins. I also react to molds and have tested highly positive to animal dander and dust mites. I noticed a definate difference when I encased my mattress and pillows in allergy-proof covers. It was shortly after that I noticed my eczema was gone--and it has not reoccured in 10 months.

For some time now, I have wondered if all of these "food intolerances" are related--or caused by something else. I don't have joint pain, but I do have muscle cramping, head pressure, weird things going on with my eyes and fatigue--always fatigue, no matter what.

I've been gluten-free for a year and a half--I had hoped that some of this stuff would have improved by now. So, I'm right there with you on the frustration!

Then, reading the article that Julie posted--that also sounded like it could be relevent for me. Instead of it getting easier, it just seems to get more confusing. Like a small, but very important piece of a puzzle is still missing.

I'm going on and on again :ph34r: And I have to hit "next" to get to my favorite smiley= :D

~~~~~~~

Andrea--how do we do the "friends"? I can't figure it out :unsure:

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Rachel,

Thanks for the links. More bookmarks. :)

I'm very interested in your appointments. Thank you for taking the time to tell us about them. I know it takes a lot of time to type everything out. :)

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Andrea--how do we do the "friends"? I can't figure it out :unsure:

If you put your mouse on a person's name, you click on the arrow next to a persons name you can choose "add friend". You can also go into a person's profile and choose "add friend".

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Laura,

I'm sorry, I must have missed something (my mind has been all over the place the last few days). What were these tests for? I know about the Lyme test, but all the others--are they for Lyme, too--or something else.

I did read that you got sick while preparing to take one of these tests :( --are you feeling better now?

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Hello everyone :) I've never posted on this thread before but have been following the last few pages with great interest. My problems are ongoing too, but I don't think anywhere near as extreme as some of you. There was discussion a few pages back about body temperature. Forgive me if my question has been covered before! For those of you who have probs with your temps being low, have you figured what's causing it + how to get it up? Is it possible to have a 'naturally' low temp or does it indicate there must be something wrong? My hypothyroidism is supposedly now under control according to the figures (yeah, I know that might not be indicative of the true situation, but I'm not going to get an NHS GP to go behind my test results), but my temp is still consistently low. Also, I find it very difficult to feel the right temperature, it just doesn't seem to want to be stable.

Any clues?

Rachel - very intersting to hear your ideas about mold. I hope you continue to get more answers really soon. Has your home got any mold in it? Have you got rid of house plants?

Susie x

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Welcome, Susie!

Many of us have low body temps due to Lyme Disease. The bacteria like the body to be cold. I have been using salt dissolved in water three times per day, and it's made my temps go up.

Low body temp also can be linked to thyroid. Do a search for Broda Barnes, an MD who did a lot of research on temps being a better indicator of thyroid than the conventional tests.

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Hi Susie--welcome to the thread :lol:

My temperature has always been low. Ever since I could remember. If I get sick, and it goes up a degree to, say 98, I feel feverish. I'm very sensitive to it.

I have had numerous testing of my thyroid--I was convinced there had to be something there--but everything came back normal.

She (the doctor) even agreed that some of my symptoms could mean thyroid trouble, but I always come back normal.

Wish I could be more helpful.

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Hi Carla and Patti

Carla - does the salt do anything other than just raise your temp? Does it help fight of the lyme (and other diseases?).

Patti - you sound just like me, 98 would be a fever for me too! I can't believe that when I had mono (all those years ago!) my temperature was over 100 for a whole week :o

I will look up the info on Broda Barnes. the problem with my GP is that now all my bloods are 'normal' (or thereabouts) he's told me he doesn't need to see me again for the time being. As if I'm really keen to see him again :rolleyes:;)

Thanks ladies

Susie x

PS does Rachelville need a lawyer, or is that a rude word round here?! lol

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Hmm, I'm not in charge of jobs around here ...

Salt and Vitamin C is a treatment for Lyme. I just noticed that it also raised my basal temps. I found interesting info at www.lymephotos.com about salt and how we don't eat as much as people used to, how we've had a rise in bacterial infections that basically coincided with the lowering of our salt intake.

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Susie x,

The lawyer job is yours if you would like it. :)

I can't help with body temps. :(

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Rachel - very intersting to hear your ideas about mold. I hope you continue to get more answers really soon. Has your home got any mold in it? Have you got rid of house plants?

Hi Susie.... :)

No....my home doesnt have mold. I shuffle between two houses and my symptoms dont change according to where I stay. Dont have houseplants either....I'm not good with plants....kill them fairly quickly. :ph34r:

I have Candida....the Candida produces mycotoxins that are poison to our bodies. My body isnt detoxing too well and these toxins are just circulating through my body and I'm just sick from it. :(

Lyme does the same thing.....produces toxins that essentially poison us.

As far as body temp....all sorts of things thrive in a low temp. These are the things I have problems with....candida, heavy metals and lyme...although I'm not 100% sure of the Lyme. All of these things are highly toxic and according to my Dr. anything toxic....like mercury, Lyme or Candida will lower the body temp. Lyme and candida will thrive in a colder temp....they can create an environment that is favorable to them.....especially when there is more than one involved.

I'm sure any infection or disease can cause the body temp to go down. Also..a person is more susceptible to these types of infections when the body temp. is low. All my troubles began with mercury. Mercury definately lowers the body temp...also brings down the immune system. Lyme and candida are opportunistic......basically mercury creates the perfect home for these guys to thrive in. <_<

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