The Lyme Disease Thread

[mftnchn]

Cici, we all have some differences in how we feel with a herx, but think "flu-like", so pain, low grade fever, fatigue is all typical.

If your chips aren't enough detox (I find it pretty funny too ) maybe some of the things the rest of us have found helpful will also help you. Let us know!

[mftnchn]

Tommy, it sounds excellent. Again, let us know if you start to have herx or other symptoms, we might have some ideas you can try.

I chuckled a bit at the chart...you are lucky you were given one! I've had to make my own--and everything keeps changing so I have to redo it. Keeping track of all the supplements and meds, which are with or without food and what time of day is a challenge.

And then there are shots, pills, powders, liquids, refrigerated and not refrigerated, etc. LOL!

[MissCici]

My doctor had just attended a conference - I think specifically for Lyme. I think that's where he got the Pringle idea.

I'm not feeling great this morning, but I'm hoping it gets better. My stomach pain gets extremely intense, so I'm nervous today will be rough.

Cici

[CarlaB]

Tommy, that's great about the pharmacist. My pharmacist is very supportive and has been a real help in seeking approvals, etc. The chart is a good idea.

Cici, hang in there, it can be rough.

[TestyTommy]

I started taking my antibiotics today -- just 100mg of doxy twice a day to start. My tummy is a little grumbly, but that's about it.

I also received by B12 shots and nystatin in the mail today. I'll start those tomorrow.

[mftnchn]

Nystatin made me severely constipated. However, this is my main celiac symptom and I wasn't yet diagnosed when I was on nystatin. Many tolerate it well.

[littlelymie19]

Hi everyone...I just finally introduced myself on the "OMG" thread (after being a serious lurker!), and I thought I'd introduce myself here too. I haven't read any of the posts in here, and I feel as though I can't right now (lyme brain at the moment), but I look forward to chatting with you other lymies. Can't wait to hear about all of your experiences and the sorts of things you've found through research and trial and error. Hope you're all doing well!

[mftnchn]

Welcome to you here too, Littlelymie!

[castor]

I have a question for the lymies. Lyme can cause a lot of different symptoms, but can it affect just one part of the body? Take up a stronghold in mostly your brain and spine?

Most of my symptoms most of my life have been primarily neurological, with things similar to MS, recently getting worse when I started losing weight.

I have other things going on in other parts, but the main things have always been with my nervous system.

Can lyme be that I guess picky of where they root?

[CarlaB]

Hi Little!!!!

Castor, I would tend to say yes. Lyme has such a different presentation for all of us. I'm here in Germany and have met 8 Lymies here .... we ALL 8 have different presentations. MS is a common presentation.

You might check out www.underourskin.com

[Judyin Philly]

Hi Carla

I've been following your blog and so glad your doing so well and enjoying Germany and the other friends you've met on LN

I saw your last post was on Thursday.

Hope I'm not missing any new great updates

I'm happy to see your well enough to do some site seeing and enjoying the various churches there

Continued healing

Judy in Philly

[Rachel--24]

Hi Little!

  castor said:

I have a question for the lymies. Lyme can cause a lot of different symptoms, but can it affect just one part of the body? Take up a stronghold in mostly your brain and spine?

Can lyme be that I guess picky of where they root?

Definately. I believe that Lyme (or any pathogen) will thrive in the areas of the body which are "weak"....or more toxic than other areas. For example, a person with mercury fillings may have more lyme in that area...particularly the jaw. The infections are not typically gonna set up housekeeping in the areas of your body which are strong and where they might have less chance for survival. They will be drawn to the areas where you are more vulnerable....and that would vary from person to person.

My infections are primarily in my upper body...mostly my head....this is also where I have a heavy load of mercury. My most recent testing showed that they are basically on top of each other...the infections may be using the metals as a "sheild".....or they are just hanging out in this area because it is my weakest area. In my body they are not seperate from the mercury....they appear to be very much connected.

[Rachel--24]

I posted this article in the OMG thread but I will post it here as well since it explains alot.

Open Original Shared Link

  Quote

Mercury and Lyme Disease: partners in the destruction of your health

Mercury should be given utmost respect and requires entirely different approaches for removal than do other fat-soluble toxins. Mercury detoxification is a subject that deserves great attention in its own right, and it cannot be overlooked as part of a book on Lyme Disease therapies because the two conditions are often linked. Although not everyone with Lyme Disease has mercury toxicity, evidence has repeatedly shown that having Lyme Disease increases the probability of becoming mercury-toxic. This is the case even when a significant mercury exposure has not been identified―as we have said, mercury is in our everyday environment so a singular point of exposure is not necessary to accumulate mercury in the body.

Why does mercury toxicity often accompany Lyme Disease? Below we will examine possible reasons why Lyme Disease and mercury poisoning frequently go hand-in-hand. We

[CarlaB]

  Judyin Philly said:

Hi Carla

I've been following your blog and so glad your doing so well and enjoying Germany and the other friends you've met on LN

I saw your last post was on Thursday.

Hope I'm not missing any new great updates

I'm happy to see your well enough to do some site seeing and enjoying the various churches there

Continued healing

Judy in Philly

Thanks, Judy.

[mftnchn]

  Rachel--24 said:

I believe that Lyme (or any pathogen) will thrive in the areas of the body which are "weak"....or more toxic than other areas.

This is exactly what my LLMD says. He related a story of one of his kids with lyme disease who went skiing and fell, strained a certain part of his spine. After that, the lyme pain focused exactly right in that spot.

[mftnchn]

Carla, I am wondering if the borrelia load is decreased enough whether you might easily fight off the co-infections??

[Rachel--24]

  mftnchn said:

This is exactly what my LLMD says. He related a story of one of his kids with lyme disease who went skiing and fell, strained a certain part of his spine. After that, the lyme pain focused exactly right in that spot.

In addition to the mercury from amalgams I also had a head injury when I was a teenager. I havent had any other "trauma's" and I dont think its coincidence that the infections I have are all focused in that one area....my head/brain/jaw area.

[mftnchn]

Carla, it was interesting on the blog where you talk about overestimating how you feel. I realize that I often rate how I feel by how much I can do. So a good day is when I can work all day. I am probably never without symptoms, its just how bad they are.

[CarlaB]

  mftnchn said:

Carla, I am wondering if the borrelia load is decreased enough whether you might easily fight off the co-infections??

I'm wondering that, too.

If I were to judge my day by what I can do, I'd be about 100%. If I take into account symptoms, then about 85%. I'm doing really well ... it doesn't hold me back anymore .... and I am more consistent ... before I'd have one day I spent the whole day in bed, then the next I'd feel fine ... now it's the same every day.

[mftnchn]

Yay! And here's hoping there is NO relapse either!

Sherry

[Rachel--24]

  CarlaB said:

If I were to judge my day by what I can do, I'd be about 100%. If I take into account symptoms, then about 85%.

Me too Carla. I have the energy to do the same things I was doing before I got sick....in that regards I'm 100% (or pretty close to it). I'm the only girl at work who can walk up to the the frozen food case and pull myself up without a ladder (sometimes I have to get on top of the case for stocking)....so I'm definately not weaker because of the illness.

I feel strong and energetic...and yet with symptoms I'm probably anywhere from 50-90% depending on the day. The symptoms never change for me. I just dont have the type of symptoms that really affect my energy or that prevent me from being active.

I'm glad that you are having alot less fatigue! Thats awesome.

[CarlaB]

Thanks, it is awesome!!!

My air hunger is flaring a little today. My flare up is due in a couple days and I always have a flare of air hunger prior to the flare up. Since babs hasn't been treated, the air hunger is no surprise, but it will be interesting to see if anything else flares. I might have other coinfections, so it won't necessarily be Lyme if it does, but it will be interesting to see nonetheless.

I'm still feeling good!

[mftnchn]

I was reading Scott's blog and I thought Dr. W's surprise about his antibiotic therapy pretty funny. Looks like Scott was diagnosed in 2005. I wonder what Dr. W would think about my 8 years on abx?? ROFL.

Carla, it will be interesting to see what happens with your next treatment coming at this point in your lyme cycle.

Sherry

[scotty]

ok i have not been here awhile

but i am on antibiotics now and have a Lyme Doctor (finally). my bladder and kidneys are getting hard and i feel as though i have to pee all the time. its been a week. and its hard to tell but should i have a feeling they are helping yet. should i stop taking them (of course i need to contact the doctor on this as well)? but i am getting the feeling i am not on the right track. i am not feeling any nausea or diarrhea, more or less constipation or like nothign is in there i still keep peeing every minute in sensation..........can't seem to form thoughts to describe it either.........i hope its just a bad day, but the antibiotics felt good slightly, very subtlely at first; and like everything else i have done the toll heads in on my bladder, accumulates, my anus gets hard my head gets light and dizzy

i just know. i will be up in the night several times here before too long. the more i drink the worse it will get cuz the more i will pee.

[castor]

It's confirmed (kind of...) I have Lyme. I found a 'voodoo' doctor in my area, and I'm not going to give many details about it all, as to most it would be quack work, but he has a powerful research type microscope in his office, with a camera and monitor hooked to it, did a blood sample/ slide, and it looked like a battle field. Some red blood cells had crystals in them, holes. There were little dot type parasites jumping all around, plauges, about everything. And.. we found a couple spyroci bacteria swimming around. I mean, I myself saw the bacteria swimming around my blood cells with my own eyes. I guess that's not seen as a way to diagnose Lyme for some reason, and he said too that he doesn't diagnose, he just shows what's there and tells you what you can do.

Everything is messed up in my body though, horribly. My hair is falling out now too. He said the diet was very good that I started, but there is a lot I have to do before even worrying about what I am eating.

I think I can trust this guy, he saw me for free, and gave me a book to read and just said to bring it back. He seems to be in it only to serve and help people, but most would take this place for a voodoo hocus pokous kind of thing.

I'll see if what he has me do actually helps.

I don't want to give out any more details than that on here, if anybody wants to know more about it, pm me.