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Posted 4/27/2013 8:30 PM (GMT 0)
I know I ask a lot of questions but can you guys tell me if you suffer with eye pressure pain and I feels like someone is trying to rip your face off. And of course the blurry eyes shocked ! Does the head stuff ever get better? Like how long do you have to do treatment till you feel like you can go out among the living or drive safe?!........Andy
Posted 4/27/2013 8:39 PM (GMT 0)
Oh yes, know the feeling. It's like I'm not in controll of my eyes, like I've got 4 of them looking at all different directions.

When I feel like it's not safe to drive I go nowhere.

Posted 4/27/2013 9:20 PM (GMT 0)
Does it ever go away? And how come lymes like our eyes so much! It is so frustrating this is the hardest disease when it does something new ever day. Do you think they will ever figure us out.........sorry I just super depressed. I feel like everyone is living life and all I do is lay down......we can't plan anything........Andy
Posted 4/27/2013 9:30 PM (GMT 0)
I had it in my eyes, and in my head for the longest time, I take Neuro antitox II it helps a lot with the nero stuff that comes with Lyme.

I used to feel like I had water swishing around in my head, I don't get that anymore. I think it was to much ammonia in my body, because at times I smelled like burnt toast. My husband said he couldn't smell it but I did for like a week straight.

I also used to get really bad blurry vision , and double vision, and eye pain.

I hope you feel better, yes with Lyme we never know how we are from one moment to the next, it makes life very difficult.

In saying that , that once you find a treatment that is working, I am starting to have really good days.

I used to have 5-7 seizures a day, I walked on a cane, I couldn't spell my name. I am 37 I was starting to think my life was over, but it isn't.

I research all the time, and miss it up, I added teasel root to my herbs, and apple cider vinegar because I have ebstein barr, and herpes now also. Just got to not give up, know there will be bad days, really bad days, but in time there will be really good days also.

justme
Posted 4/27/2013 9:55 PM (GMT 0)
Justme,
I just have to tell you how much improvement I've been able to see in you through your posts lately!! I'm soooo excited for you!!! There was a time when I was really scared for you!

I'm so very happy that your treatments are doing what they are supposed to do for you!

Healing is awesome! smilewinkgrin (sorry, I'm on a bit of a caffeine overload this afternoon! LOL! My poor goats, wait until I have to go milk them!smhair Giggle!)
Posted 4/27/2013 10:20 PM (GMT 0)
Hi Justme,

I want to parrot what Traveler just said. It is great to hear that your neuro symptoms are being alleviated. It was absolutely heartbreaking to hear a daily account of how bad off that you were. Your posts do definitely reflect an improvement.

Congratulations again!!!

Don
Posted 4/27/2013 10:39 PM (GMT 0)
Thank  you all for your encouragement it really helps us new peeps. This site has been such a blessing to me. There truly have been days that I just want to end it but hearing that there is hope and you guys do in time feel better keeps me going..........Glad to hear I am not the only one with all these weird symptoms I don't go out much cuz of my tremors are so bad. But now hear about you guys I know I can keep going! Thanks and blessing to you all
Posted 4/27/2013 10:45 PM (GMT 0)
Andy,
I was one who suffered with those tremors all the time - they got so bad that I would literally bounce off of a chair, couch or whatever I would sit on once they started! If I was laying down I would just lay there and quiver - terrible things that we have to endure. shakehead

The good news is that it's quite possible that this will all heal! I went for 47 years without adequate treatment, so I have a lot of permanent damage and such, but even I healed! I have a life now!!

Hang in there! There will be bad days, but the good days will begin to out number the bad. Just keep on attacking the infections and detoxing like crazy, and, of course, coming here to post frustrations, questions, victories (no matter how small!) and vent or cry on our virtual shoulders (Lord knows I did this a lot!!!) - that's why we are here!
Posted 4/27/2013 10:46 PM (GMT 0)
I just want to get on here and encourage other people , because there was a time, when I was in a bad place. I thought my life was over.

I had fallen on the floor , I think the third time that week, and I just couldn't see living my life that way.

That day Traveler sent me a email, and she told me about herbs, because I had such a hard time on the abx.

I would cry, and my husband and my kids tried so much to help me, but it was like my body was in this battle for it's life. It was a very horrible time.

Anyway, I think you Traveler saved my life that day, I think I would of given up if it wasn't for your email, I would have kept thinking I wasn't going to get better.

I do believe it has to be mind , body , and soul. If you believe you are going to fail, you are, if you set your mind to keep searching keep looking, keep trying, you will start to see improvement.

What I do is research as much as possible, I take notes, and if I think it will work for me , and I can afford it I try it. I realize most of us are on a limited income, we have lost everything already, so I try to find things that are really affordable.

I do believe that we have to detox our bodies daily, eat gluten and sugar free, and find the right medicine . It can be abx or herbs, it's everyone's personal choice I just did not get better on Abx, I was a lot worse.

I was able to play a game with my son yesterday outside, and I his friends were all out there. I said don't you want to play with your friends, and he said no I want to play with my mom. It felt amazing.

This site is great, and it's saving lives.

Justme
Posted 4/27/2013 11:27 PM (GMT 0)

I totally agree with you Justme.

I don't know how things would have been without this site on the other side of the world. I'm still not better at all, but  knowing that I can talk to someone when I'm going through the roughest times is priceless. I received so much valuable information that really made a difference.

And I love how people's different oppinions on treatment are respected.

Posted 4/28/2013 12:21 AM (GMT 0)
What is your form of treatment Mariels ?

Is your body detoxing? Do you have vitamin issues? Gluten issues?

I see a LLMD, are you able to see one? I know they get very expensive.

I added teasel root , and I know it's not for everyone, but I feel that it is helping me get better.

I ask this because I have other things going on along with the Lyme, like chemical poison. I was reading that sometimes people don't heal because other things are going on in their bodies besides the Lyme and co-infections.


So it kind of like a onion, have to pick all the parts away until you get to the core of the problem.
justme

Post Edited (Justme4508) : 4/27/2013 6:28:52 PM (GMT-6)

Posted 4/28/2013 10:46 AM (GMT 0)

Hi Justme,

I was on abx (following ILADS recommendations) for 5,5 months, but had to stop for now cause I can't handle herxing (can't detox the way I'm supposed to + herxed all of the 5,5 months). I had an extreme inflammatory reaction (was getting dangerous dr said) and am trying to get that down now.
I don't think I have vitamin issues, but I have lots and lots of severe food allergies and intolerances (which makes it difficult or sometimes impossible to take certain herbs, like turmeric and boswellia make me really sick), severe chemical sensitivities too. I started eating gluten free 3 weeks ago, although I have no intolerance, but because it's recommended with Lyme (was difficult cause there's not much left for me to eat).

I'm on Buhner's now, not full dosage, if I increase dosage I start herxing bad again. My dr is hesitant about this for now (but he's planning to cooperate with a herbal specialist) - he could loose his license over this, although he's prescribing lots of natural supplements. But I'm doing this one on my own responsability.

I have heavy metal poisoning - the test results were shocking to me. Mercury (84 !!! times the acceptable range upper limit), tin, nickel, cadmium, lead, copper (17 times the max limit), manganese were going through the roof.
I already got treated for GERD, gastritis, IBS and leaky gut - I got treated to bring down high nagalase levels, I'm XMRV positive.

I'm seeing what you could call an LLMD (I'm in Belgium), but these TBD's are really 'new' here. He's an internist/cardiologist who made it his life's work to treat people with CFS and fibromyalgia (sees this as symptoms, not diseases, and looks for the cause of them): always examining, testing, trying to negotiate with government, going to seminars all over the world, 60% of his patients are testing positive for TBD's...

I'm definitely facing an onion too... lol

Thank you

Posted 4/29/2013 2:28 AM (GMT 0)
It's a complex disease, if it was just one thing that would be rough enough but it's not.

I am in the the US, and where I live in Illinois I was told the Lyme is not here, well I know lots of people now in Illinois that has Lyme.

I did take three months of doxy, but it did not get me better it made me worse. So many people with Lyme have Vitamin D and B issues, I am very low in both.

I am just learning as I go, that we have to be are own doctors with this horrible disease.

The machine my LLMD uses is from Germany, It's a ondamed machine, I am not sure if they use that by you. From what I have been reading it's like a higher powered rife machine, and she triggers in on the viruses, and issues.

I think it's important to try to keep our pain down, at first I wasn't doing that, I was not taking any type of pain medication, but I have since changed that.

Our body is already in suck a weaken state, the pain will only make it worse, so I have been trying to find ways to control it. I do drink the ginger quite often, and since you can't take the turmeric, I would hope your doctor give you a good pain medication to help.

I was told I had CFS, Fibro, Ms, Autoimmune, and Lupus, so I understand, so many of these doctors do not know what to do with us.

I hope that your LLMD finds you some relieve, because it's horrible to be in pain everyday, I know I am going through it myself.

justme
Posted 4/29/2013 11:15 AM (GMT 0)

andy cotton candy said...
I know I ask a lot of questions but can you guys tell me if you suffer with eye pressure pain and I feels like someone is trying to rip your face off. And of course the blurry eyes [img]/community/emoticons/shocked.gif[/img] ! Does the head stuff ever get better? Like how long do you have to do treatment till you feel like you can go out among the living or drive safe?!........Andy

Hi Andy, I live brain, head,face, ears and eyeballs. I can relate too. I got rid of a lot of the severe eye pressure and top of head and frontal lobe pressure, and more head symptoms using my natural plants.

But because inside head is still chronic acute from the meningitis aspect of this, I've since added pharma abx and it's hitting it now too in conjunction with my plants. I feel the dieoff from both plant and pharma, it's a slow process bringing it down but it's coming. Not functional yet. I can't drive yet.

With pharma abx which is a new addition and I've only been on on pharma abx 6 weeks and now adding two more, I useplants Stephania, Sida Acuta, Japanese Knotweed, Houttunyia, Cat's Claw, Andrographis, all of these from bulk plants in boiled formd drinking the decoctions all day, and tincture form. I have been treating one year. I herx on both forms plant and pharma, brain and eyeballs, and it's working but extremely slow progression. Those are lyme, babs and bart plant parts cut and sift form.

I'm still chronic acute mind you, but it's working.

Post Edited (runner64) : 4/29/2013 5:20:16 AM (GMT-6)

Posted 4/29/2013 12:05 PM (GMT 0)
Andy, sorry for hijacking your thread!!

Justme,

Not receiving pain medication at all, and I think I need some every now and then, just to get the pressure off, cause it sometimes drives me crazy combined with the fatigue and the discomfort and emotional instability. I'm seeing him next week, need to ask if he's willing to prescribe something stronger (that can at the same time put me out in the evening, that would be great - lol).

Paracetamol or aspirin don't do anything for me. Ibuprofen & co mess with my stomach (I think I'm getting gastritis at the moment, stomach is in real real bad shape).

I forgot to mention that I react on ginger too... so that's not an option either. My head is in such a mess that I forget to ask my dr the most simple or important things.

I looked up the ondamed machine, nothing in Belgium that I can find, in the Netherlands several. Bioresonance therapy I can find. I had a very good natural therapist (working with electromagnetic machines) when I was a kid, but sadly the man died a few years ago...

Thank you for your help Justme!

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