feel like letting go..

That is crazy that they won't let you stay on IV! Makes me so mad for you!

im in the uk so picc line is unheard of, 4 weeks is the only length of iv i can get as its rather over protective here about damage and antibiotic resistance so lyme docs are very heartened to give out more. (in a row that is, not to say in 6 more months i might get another month ) im actually doing even better since i wrote that update, ive basically been able to look after my toddler, make the meals, im still having issues with symptoms, but they are reduced a lot. im VERY worried about stopping the iv. my lyme doc wants me to stop all abx for TEN DAYS after i finish then he wants to pulse me with oral abx every ten days and continue like that. on the few occasions ive not had any abx im very poorly after 4 days, so im very scared about that. he wants to put me on an abx ive also never tired called Zinnat. he showed me a chart and explained hes just had training on this subject and its a new thing he wants to try and was very excited about it, he explained he will trick the lyme into growing then the abx will destroy some of the bacteria, and this process is repeated until symptom free. believe it or not pulsing in the uk is unheard of and this is the first lyme doc ive found who does it.
Aside from that he wants to focus on my EBV (mono virus) and close the book on lyme for a while. hes convinced that it will benefit me as he says i have a chronic and reactivated virus that could be causing a great deal of my symptoms and i may not recover until we look at it, but im super scared to do this. once you get one day with no major pain, returning to it is, more scary then i can express.

Post Edited (waterbee) : 10/23/2016 11:15:31 AM (GMT-6)

thanks, alas i have no option there is no one else in the uk who can help. my lyme doc is well known and even gives talks on lyme in the uk, i think he has much experience of what hes been allowed to do so far, and is genuinely trying to help by trying this new routine as ive been a tricky patent. but perhaps doesn't know the stakes are very high for me, and how close to suicide ive been the last few months (ofc that doesnt mean i should be treated any different to those that are not, just that im probably going to panic more if i go back to where i was, not to say im going to do something if this doesnt work, its just the horror or knowing i could get back into that mentality if it doesn't) but after my last round of iv (6 months ago) he did try me on continuous abx and that didn't work either (though we now know that wasn't the right dose, it was next to impossible for my stomach to tolerate the amount he thought best for me, so there was little he could do abx wise to help and ofc i became very sick again).
i think there is not much choice then to try pulsing but also, do you think it might be worth doing a herb protocol in between pulsing? he did give me some Semento to take which was so powerful i couldn't walk for a day afterwards, i think he would be open to doing what ive asked for. hes not a bad doc, but alas in the uk and they are watched like a hawk, having to justify every little thing they recommend. hence only now why pulsing is becoming an option (they needed more paper work and studies to back them up trying it, otherwise they would be in alot of trouble and shut down). we are years behind in the uk due to restrictions. i think thats why a great deal of people go to america for help with lyme.

Waterbee I'm so sorry. I feel for you dearly but glad you are feeling better on IV. I myself am not a fan of the idea that lyme is a terrible disease or that IV's are the be all end all. I think their frequent failures are a testament to that. As traveler i would recommend looking into herbal protocols and particularly ones that don't rely solely on antibiotic herbs. Buhner covers the gamut of anti-inflammatories, protective, growth inhibitory herbs that can formulate a far more sophisticated protocol and i have talked to many who have gone into full remission on that alone. Of course, be careful combining herbs and meds and do your research. Beyond that i struggled to get better with antimicrobials and my new doc has found evidence of heavy mold exposure... So it's just sort of broadened my scope of the issue. As humans we are ecosystems, not machines. We don't break, we collapse. When one microbe gets a foot hold it's influence on the immune system promotes another. And the truth is we are doing a lot of damage to the global and internal microbiomes with habitat fragmentation, overuse of fungicides and synthetic chemistry, bad building design, bad diets etc. So in my case, don't fix mold, lyme persists and i'm just spinning my wheels with antimicrobials. I also have a nasal staph infection that is known to cleave important immune molecules. We all seem to understand how coinfections from ticks make lyme harder to deal with, but we tend to forget that we've been acquiring other synergistic infections our entire lives. For many of us i honestly believe that Lyme is just the one that broke the camels back. Just food for thought. I would look into the Buhner protocol for now, but just keep it all in the back of your mind. There is always hope. Always a new lead to chase. Always a new treatment to try. Everything from cancer to cardiovascular disease, to alzheimers, to many many autoimmune diseases have been associated with microorganisms and not everyone has lyme. So where do we encounter all these? And what sorts of lifestyle factors make it hard for us to fight them back into dormancy? Some times with lyme we can miss the forest for the trees.

Leaky gut is very real! It's intestinal hyperpermeability - Intestinal permeability is a term describing the control of material passing from inside the gastrointestinal tract through the cells lining the gut wall, into the rest of the body.

That's why we get these odd reactions to food, medications and supplements sometimes, and have lowered health overall. We aren't able to absorb the nutrients we need through our intestinal walls, as it passes through them and goes out into the body.

"im such a sceptic and i hate that, but it seems there is just endless tests and no good results lol". Believe me, i get it. I got sick as i was trying to finish up my bachelors in biochemistry. It has been quite the ride trying to figure this out in the face of so much medical nonsense. "Leaky gut" is absolutely real though they call it "intestinal permeability" if you're ever trying to do a literature search. It's basically the same idea if you've ever had one of those fear-mongering dentists (do you even have those in the UK? I kid i kid...) who tell you to brush your teeth or you might have a heart attack. But basically loss of species diversity through toxins, bad diet, antibiotics, or whatever else can lead to niche expansion and pathological alterations to membrane function which is your first immune defense. Basically being a physical barrier to microbes. Microbes then will essentially just leave your intestine (or your gums) and enter your blood stream and stimulate inflammation. This is actually why people get heart disease from eating high fat and presumably high sugar diets. That fat selectively feeds fat metabolizing organisms, causes a loss of diversity in the other organisms who normally act as checks and balances for ecosystem health, and then like humans walking out of Africa proceed to take over and colonize whatever they can relatively unimpeded ultimately ending up in your blood stream and inflaming your vessels. Some of the more successful ones may colonize other tissues. In fact it's been proposed that some of the infections resulting in alzheimers originate from commensurable flora in the mouth that have successfully colonized the brain. So, whole foods are the only sensible solution to this. The extreme substrate diversity and growth modulating compounds promote diversity and healthy community dynamics. Some will say to go as far as paleo (AIP) as there has been question whether certain food products stimulate leaky gut directly. The arguments for that are interesting but I wouldn't hang everything on it if it doesn't make a big difference for you. I ate AIP for a year and then just went whole foods. I noticed a huge difference starting AIP, but not when reintroducing whole grains/legumes. So my philosophy now is try an elimination diet if you want, but ultimately just don't eat crap.

As for the herbs, that's why i recommended Buhner. Buhner doesn't depend on antimicrobials and is highly flexible so you can personalize your protocol to avoid herxheimer reactions. Most of his stuff is designed around making the body hostile to microorganisms. In essence inhibiting processes they use to "eat" and infect new cells or whatever. He did some pretty extensive research and it seems its a gentler approach for most people. My only gripe is that he's a little lax on the safety. Not to fear monger, but the risks are there just like other meds. You want to know what you're combining, get regular liver function tests, etc. Do you react just as bad to other herbs/medications when you're on IV? I'm wondering if starting something while on it might help you tolerate it better. Though of course talk with your doc about it.

And again keep the mold thing in mind. If he runs another test maybe ask for TGF-beta1. It's not diagnostic in and of itself but if it's like 20,000+ or something ridiculous some docs think it's indicative of mold more than anything else. But you're right to be skeptical. Health is a sketchy field with a lot of genuine people and a lot of opportunists.

thankyou so much, some really good well thought out advice there. ive been avoiding gluten for about 6 months, as im vegetarian i dont get red meat (though i reluctantly take fish oil for inflammation now) it seems i need to start researching as thats all ive really tried.
funny thing was before i got sick i was very healthy. i made everything at home (i would be horrified at frozen food) and i never had anything sugary in the house.
then i fell pregnant and had 7 months of sevear morning sickness (i vomited approx 22-33 times a day and had to be hospitalised at one point for severe dehydration ) i wonder if the real damage started then to my gut?
As it was a bit later i became ill. (though prob had a tick bite in that time to of tested pos for lyme )

after i had my baby she had colic for ten months (thats crying 2pm until 9pm everyday) and i stopped cooking home made meals and just fell into a "il grab some cereal" routine. ive never eaten well since. i was to tired then, and to tired now for different reasons lol

Post Edited (waterbee) : 10/23/2016 2:46:15 PM (GMT-6)

i became a veggie as a teenager after seeing a documentary about how animals are treated, but i appreciate now that its not as black and white as not eating meat and staying the same healthy self. ( i 100% thought i could get all the b12 i needed from green veg for instance, which would be great if i was eating enough green veg) im more open now to eating certain meat (if organic and free range ect) though i think i would find it hard to get past that barrier to fully embrace it or enjoy it. funny enough my dietitian actually said that im making myself the hardest diet, trying to be gluten free and veggie and even he would struggle.
i take iron tablets from my nhs doctor (that dont seem to do much) and im now just starting on a multi vitamin, though truth be told for a good year now ive been taking different vitamins to see if that could be the root cause (ie experimenting with taking high zinc for months, then magnesium from reading functional medicine books ect)

hi everyone
i thought i would do another update as one day someone might come acrost this thread (years away if they keep them that long?) and it could be of help. i know ive found lots of posts from like 2007 ect and always wondered what happened afterwards at least!

ive been off all abx now for ten days! i didnt think i would cope at all but ive stayed pretty steady at the lvl of recovery i got on the IV (early days) im going to start pulsing with oral abx next week IF i feel worse, if i do not im going to stay of abx to see what happens as im now doing an antiviral protocol.

the antiviral is for my EBV and im having IV antivirals and IV vitamins to start fighting this as im told is can create the same caos lyme can.

im doing ok and although its early noticed a pretty quick improvement with my arthritic like symptoms since i came of the abx and went into antievirals. ive not been able to bend my legs for well over a year unless sitting or being very careful, but today i was sitting on the floor playing with my toddler and even gave her a horsey ride (unheard of until now).
im not sure if this is me being of abx and im not feeling awful all the time, or if its the new protocol but be interesting to see what happens next.

over all im seeing some positive progress and the place i was in just a few months ago when i wanted to end my life now feels like a distant and dreadful nightmare.

this proves to me how much this condition can really send us into a horrible place mentally as well as physically, once i had that thread of hope it helped so much. i know its a long road ahead and it wont be this simple and who knows what will even happen tomorow? but for now im doing ok.

waterbee, it is so great to read that you are seeing some improvements after being in a very dark place. It will surely be inspirational to others! Keep on posting.

Well, congratulations, Waterbee!!! I'm so thrilled that you are seeing such improvements!!!

When even the "little things" in life seem to be taken from us, it's so hard to cope.

And yes, you're right. People read through old posts all the time! Even if they aren't members (yet, we hope!). I have people contact me personally and see them post for the first time saying something like "I've been following (or lurking) on the forum for a while now...."

We really don't know how many people will find and read our posts. I'm so glad you updated this one - besides, we want to be able to congratulate you on your progress!!!!

The activity that helped me the most was seeing a biological dds. Its easily worth getting checked by a biological dds
Could be a major key-

A biological dentist. They see the teeth/mouth as a connected part of the body, instead as a separate system - as in a tooth infection can cause the whole body trouble. They are more likely to be concerned with the health of your mouth as part of the health of your body, instead of having no impact at all, like most dentists and doctors.