Are you also keeping your body strong with probiotics and various supplements, i.e. magneisum, B-complex, Vit. D, NAC, etc.?
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Maya12
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Oh yes I have been treating parasites for about 3 months now and chelating, doing ozone and uv light treatments for the infections. I am also on many support supps.
How long can it take to notice any improvements with parasite treatment?
Or have some treated for 1 to 2 years without any improvements but finally turned a corner?
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klutzo
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I felt the same way after 4 years of constant herxing from treatment. I stopped, and the disease accelerated a lot, causing end organ damage. So, the treatment had been holding the line, so I didn't get worse. I was not dx'd until I'd had it for 21 years, so maybe holding the line was better than nothing.
klutzo
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Maya12
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thanks klutzo but what are you doing now to get better? do you have any hope of ever getting better? are you better?
or for those who have had it for a long time are we just f....d? and stuck like this for the rest of our lives?
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gmb
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Maya,
I too was very frustrated after my first year in treatment. I then switch LLMDs and got more agressive. After my second year still not much improvemnts, and in some cases more issues.
At about 2.5 years into tretament I could see some improvements, but that plateau'd around my 3rd anniversary and we changed protocols. This caused a major herx or babs flare that I'm just starting to come out of.
This week I'm doig pretty good. Best in a long time. You are treating pretty agressively and trying all the right things I wish I had done in my first year.
Maya12
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thanks gmb i do appreciate yuor response are you getting better?
i really do wonder though what the point is.
every day is a living hell of mental and physical symptoms and i am so far from the person i used to be.
does it really take this long?
does anyone ever get better and get theihr lives back and are normal emotionally again?
is one year just way to short a time to see any improvements after being infected for 16 years?
i am so ready to just give up what hope really is left to have a normal life again?
i need hope that this will someday end and that most don't see many improvements in the first year but do still get better?
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Maya12
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and how long can a herx actually last?
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Maya12
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shouldn't i be seeing improvements after a year of treatment?
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gmb
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I wonder if this treatment is worth it everyday myself.
From what I've learned... treatment can take up to as long as you had been sick with the disease. Three to five years of treatment seems average for cases involving multiple infections and parasites. FL1953, if that's what we have, is so new there is not a clear solution yet.
I won't treat forever either. I can't answer how log a herx can last. I haven't had many typical herx cyles or episodes. I do have some improvements, and sometimes major setbacks.
We are seriously ill with this disease, and have no support from the traditional medical industry. I sometimes think I'ld be better off diagnosed with a terminal cancer and qualify for SSDI.
You are alot younger than I... keep a good attitude is your best rx.
Maya12
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I am just so ready to give up and pack it all in
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Ellen101
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It might be time to look elsewhere. Perhaps the Lyme is no longer the issue, but something else. I had a conversation about this with my LLNP. She said so many people spend yrs treating Lyme with no improvement and the reason is they keep going after the Lyme when in reality it is no longer the issue.
The damage that Lyme has caused may have to be addressed. Gut issues, allergies, food sensitivies, candidates, adrenals etc.
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Maya12
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The only thing is that I still see active infection and biofilms and metals in my blood on live cell testing. But how could I still be so full of this crap and my adrenals are fine.
I feel like my brain is damaged and can't be happy or normal again
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Maya12
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And I have worked on my gut and adrenals
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surprise
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I believe you've said you've tried anti-depressants before, and they didn't help, but there are a few different kinds,
or something along those lines? I certainly know when going through this, we all have dark moments/days
But if it is everyday and ongoing, there can be other things to help get through- maybe there is a chemical brain imbalance -
Maybe look that way---
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Maya12
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There is def a chemical brain imbalance but I don't know what to do for that since most meds make me worse.
Shouldn't the chemical imbalance get better with treatment?
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Maya12
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I have been treating heavy duty for a month strait for babs and parasites and biofilms/ metals can this make you very depressed and hopeless and rage and angry?
Should I take a break?
Will taking a break even help?
And can some feel worse for the first few days of a break while the body dumps and detoxes before they actually feel better?
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Catgirl
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I hear your frustration. We are all looking for answers, but we are all different and each have our own path. Just hang in there Maya. Are you getting good bart treatment? Bart meds helped me a lot (doxy, rifampin). Then A-Bart. Maybe you need a new practitioner. A fresh new perspective helps. I switched a few times.
I can tell you that for me, one year wasn't nearly enough treatment for me to throw in the towel. My progress has been v-e-r-y slow. There are many factors to influence how fast we recover (genes, environmental toxins, heavy metals, past steroid treatment, etc). Fast doesn't apply when it comes to chronic lyme. I personally think it takes years to get better. IMO, one year of treatment barely scratches the surface.
It hasn't felt like I've gotten much better until I look back at the list of symptoms I had a few years ago. I had tons. The list has gotten shorter. Unfortunately, when one co infection gets reduced, another one pops up and demands treatment. This is how it is. But progress is progress, even if it's inch by inch. I'll take it.
I keep going back to something Stephen Buhner said at his last seminar: "The immune system is essential." He said that every research paper he's read has noted that the severity of symptoms is directly related to immune health. He said immune status has to be addressed.--Also stealth pathogens are extremely good at hiding. This is probably why it takes us so long to recover.
Maya, I doubt you are fighting just one disease. I am just discovering/accepting proto (protomyxzoa). It grows biofilm 100x faster than normal. How is anyone going to tell if they have it unless they research it and look for some symptoms? I think many lyme patients have it, and just don't know it. The biofilm it produces slows down progress because the meds and herbs barely get through. I tested negative for it, but can tell I have it. Tests are just tests.
I'm sure this is what is going on with me. The only way around it is for me to eat low fat. It starves proto. However with the biofilm, all the bugs thrive. This is why I think most people don't discover it because their lyme and co infections present themselves--not proto.
When I eat low fat, I feel better. Not a ton better, but better. I'm not sure most people would notice this, but it is worth trying and keeping a journal so you have something to refer to down the road.
Also, you have to keep after parasites. They are in all of us, IMO.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
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quote:Originally posted by Maya12: I have been treating heavy duty for a month strait for babs and parasites and biofilms/ metals can this make you very depressed and hopeless and rage and angry?
I wish I had something cheery to tell you, but this stuff is hard. I don't see why you can't take a break though. Follow your gut. If you need one, take one. I think bart is an issue for you. I'm no doc, just a guess.
Maybe let up for a few days and see how you feel. Hang in there Maya. You are definitely not alone here.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Maya12
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Hey cat girl thanks for that , I needed to hear it. Does taking wobenzyn or systemic enzymes inhibit the fry bug from laying down more biofilms?
Or how can you get rid of the biofilms? Other than chelating and systemic enzymes?
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Maya12
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And I am not on any abx but does garlic kill Bart or what herbs kill Bart?
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Maya12
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I am on parasite treatment but on directly killing Bart that I know
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Maya12
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The paracide does have cloves too would this kill bart
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surprise
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What Bart treatment have you already had?
Before I knew I had Lyme/Bart, I was on a antidepressant - to help with anxiety, feeling overwhelmed, etc.
Some are very different than others- it took a couple tries to find one that helped-
After testing positive for Bart and starting treatment, my LLMD advised me not to go off it during treatment-
This last January, after having done 2 separate rounds of Levaquin, and Cipro, rifampin, mino, HH2 capsules, Byron White A-Bart, Beyond Balance Bar-1, etc.
I finally felt okay to go off my anti- depressant. And I'm glad, and have no need or desire to go back on-
My point- maybe you should try a different one to see if you can get relief while treating- because this seems ongoing for you.
And, I think biofilm treatment is always a good idea throughout treatment, so the antibiotics and herbs can get through.
Just some thoughts-
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Maya12
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I have done biaxin for Bart and UVB and ozone bl treatments which seemed to help but I haven't done one in a while
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Maya12
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And I wish I could take an anti depressant but none seem to work. Have tried Effexor, Paxil, Luvox, rameron, ciprolex and Zoloft all which just made me way worse so I don't know what to do. The only one that even helped a little was the rameron and not for long. All anti depressants just seem to make me worse
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Maya12
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Do most have this many mental symptoms or am I just really brain f...d
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Maya12
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And I don't seem to be able to handle abx, they make me psychotic and compulsively suicidal.
I think I am really just all out f...d and there is no hope
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Maya12
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I think I have decided I am done with this and I am done with treating what is the point when no progress is ever made.
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Catgirl
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Maya, don't give up. You can go down hill if you give up. And you're not screwed. Surprise had some great advice above. Try something different. Whatever you are doing, isn't strong enough. A-bart really helps my bart. I think forest health carries it. Bart brings on mental issues big time. It makes some people psychotic. Have you read Buhner's new book on bart yet? It's a good one (started it).
Keep in mind, the bugs are controlling your mind right now. The parasites want you to give up, especially since you've been trying to kill them all month. Remember what Dr. K said about this: "Patients will reject all treatments that affect the issue that requires treating. Patients will not guide themselves to health when the microbes have taken over."
And bart behaves just like a parasite with me. It flares almost every full moon.
For proto, you have to cut the fat from your diet. All oils (processed). Ivermectin helps. Diflucan helps me too. Also GSE. You should check out the protomyxzoa threads. It's quite possible this is an issue for you.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Maya12
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Hey catgirl did you flare like crazy at first on Bart meds?
And how do you know it isn't strong enough? Is this because I have been on the meds for a while with no help?
How can you tell the difference between a flare and a herx?
I felt so much better when doing the UVB and ozone, felt like it hit everything well
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Maya12
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Do most feel better after starting a new protocol or do you feel worse for a while?
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Maya12
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And is it ok to take breaks once in a while?
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Catgirl
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Maya, I just tried to pm you but your mailbox is full.
I did flare with bart, but not like crazy. Remember, we are all different. Babs was way worse for me than bart ever was. Everyone's symptoms are different. You could have several forms of bart, and the next person one. You just never know.
I think what you're doing isn't strong enough because you mentioned above that you aren't on anything for bart (at least that is how I read it), AND, the mental stuff is still bothering you.
A herx is flu like symptoms for me. A flare is usually specific symptoms, like for babs or bart, or joint pain (lyme).
I usually feel better starting a new protocol. I'm not sure how others feel tho. My response isn't a gold standard. Everyone is different.
Are you on anything for bart?
Are you taking binders daily (a must with parasite treatment).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Time for a new LLMD. It doesn't always take years to hit remission. Coinfections coplicate things but you need a good LLMD. If you don't see improvement in 6-8 months, find a new LLMD.
-------------------- Faithful
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Rumigirl
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I know that you are doing a lot, but are you detoxing? This is key. It may or may not be the most important thing for you right now,
but I don't see how anyone can make it through this mess without it in one form or another.
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surprise
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We are pulling for you! Excellent advise here!
JMO, but Biaxin and UVB treatments (and I am not even sure about those) is NOT enough or effective for a chronic Bart infection.
Canada, I hear, is very hard to find ILADS treatment, but new Doc does sound in order.
And YES on detox. Glutathione, liver cleansing (milk thistle, NAC, etc) massages, Epsom salt baths, binders, bowels moving, homeopathic remedies for lymph drainage or red root, etc.
the antidepressants you took seem to be in the same type of 'class' and, sometimes it can take a good 4 weeks to kick in.
Also, I don't know what kind of chelation you are doing, but that has to be done very, very carefully so as not to redistribute...if you were to drop something, maybe that?
Good thoughts out to you---
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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GretaM
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It is very hard to find an ILADS doc in Canada. It is hard enough to find a doc even for regular gp stuff... Let alone lyme, which is equivilent to wearing white after labor day, for physicians. (joke...it's much worse than that for docs in BC and Alberta. I don't know about the rest of Canada, but one can assume it's just as Taboo)
Personally, I can only speak for myself, but as long as I keep treating, as long as I feel like I'm trying, then I feel like I might have a chance at a quality existence. I feel like I might have a chance to do the things I've always wanted to do, but kept putting off. There's hope there.
Some days, that glimmer of hope is just a small sliver of light in a black room, other days it's so bright it's blinding.
Hang in there Maya. One of these days you'll be able to do everything you ever wanted. Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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CD57
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It sounds like you could use some detoxing....are you religious about things like charcoal, coffee enemas, glutathione pushes? When I'm toxic from tx I get these flashing images in my head like a motel sign.....detoxing takes them away.
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Razzle
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I don't think I saw any improvements until I went on Flagyl. Everything else just masked some of the symptoms while I was on it, but those symptoms would just return as soon as I'd stop the treatment.
BTW, I've been treating since 2008. Still have most all the symptoms I started with, but a few are gone.
I know I would be better sooner if I could handle the aggressive protocols most ILADS LLMD's do. But I can't. My body can't handle it...found that out the hard way.
So I had to figure out why and start addressing that in order to start seeing better results. Turns out I have a whole bunch of methylation problems (gene mutations), and certain nutritional supplements make a huge difference in my body's ability to tolerate things.
I agree with the above posters that suggest maybe you need to consult another doctor. No one person can have all the answers for everyone, especially with the complexity of Lyme/coinfections.
And we need to remember, there are those who have conquered this stuff and have moved on - it does get hard to see this because they tend to drift away from this forum.
But there are a few who have stuck around, and they are the shining beacons for us still in the trenches.
Just don't give up, ok? I mean, you are worth it, so keep pressing on. We all are worth the fight.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
If you are willing to travel there are LLMD's in the states that will treat you.
-------------------- Faithful
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Catgirl
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Maya, are you doing coffee enemas? They are a big help.
If your practitioner doesn't use Byron White herbs, you can get them at link below. A-bart has been instrumental for me in dealing with bart. I thought I kicked it last year with A-Bart (unfortunately, I didn't do it long enough). Also, another kind soul just posted that it is beneficial for proto as well.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Click on the upper left-hand side (green box) where it says "Get Support". Find the one for your area and contact them. Maybe they can give you some more information or help.
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surprise
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Green and Healthy carry the Byron Whites at a better price, without a consult fee....FYI.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Catgirl
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Right on Surprise! I didn't know about them.
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posted
Maya, I have read your posts and hear your pain. We are all different but I have had similar symptoms as yourself, as have many of us. There are three things that work for me to lift those mental issues. Diflucan, raw garlic and enemas.
I always thought the Diflucan worked because it knocked down the yeast and I am sure that is part of it, but I also now know from genetic testing that I have detox issues and it is what is known as an inducer, basically it speeds things up. You should take a glance at Phase I and II inducers. Andy Cutler has great info on this in his book.
The enemas just pull out poisons and parasites and lifting that load a little helps a bunch. Also, charcoal helps me.
I hope this helps some, it took me years of trial and error to find things that helped and no I am not well but I am not bedridden or living on anti-depressants anymore. I did for years until I got treatment for Lyme and parasites.
Don't give up Maya TrueSun
-------------------- Misdiagnosed for many years. Treated for many things besides the real issue. Lyme diagnosed April 2008. Parasites diagnosed recently. Past to both my sons. Trying to remain hopeful and thankful. Posts: 144 | From Ohio Valley | Registered: Mar 2009
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Maya12
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It's funny because I was doing so much better when I was doing ozone treatments but then stopped that to go after biofilm and metals and parasites but I am wondering I'd I have released a whole crap load of bacteria
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Catgirl
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I think so. Hitting metals and parasites stirs up the pot. All the toxins just float around in your body making you feel worse than before you started. This is why it is tough. Good detoxing is mandatory.
Truesun's post is fascinating to me (diflucan, raw garlic, enemas).
What are you taking for binders?
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lymeinhell
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I've haven't been on the board for quite some time, or when I am, I just read, but your post just sounded so sad, I figured I'd chime in.
Treatment IS worth it, and people DO get better, even after going decades undiagnosed. How do I know? I AM ONE OF THEM!!
I apparently got Lyme in 1994, got rebit in 2003 and picked up Bart, and my life went to hell, until I found this board. My LLMD got me started on coinfection treatment (Bart) and Flagyl from the get-go, and I was able to wean off abx in about 9 mos (2004). I had my life back, I could function, have a career, commute, have a life.
That said, I still had many issues to fix, some caused by the infections, my prior poor lifestyle, and caused by the treatment itself.
Getting well is a delicate puzzle, and you need to put ALL of the puzzles pieces in place before you get back to healthy.
Knocking down lyme, addressing all coinfections, fungi, parasites, detox, MINERAL DEFICIENCIES (which is a huge part of this mess), adrenal issues, and adopting a healthy eating and living lifestyle, all play a part in getting your brain and your life back.
My story is under the Success Stories link already, so any of you new people can search on my id name if you'd like to find it.
Maya, I think perhaps you could be hitting a very toxic point, and your body is in 'fight or flight' mode. It's easy to feel down after what feels like treating forever... that's what Lymenet is for. We're here to talk you off the ledge, and to remind you that you are not in this along, and many others have come before you and were able to walk through the same dark place you are.
So my advice to you is - have a brief pity party, let yourself cry a bit if needed (crying does release a large amount of toxins), and then pick yourself back up again and say 'I am WORTH IT. I WILL get through this. ' and then focus on right now, today, this second. No worrying or what-ifs. Focus on what you CAN do to help yourself.
Catgirl brings up a very valid point - no binders = a redistribution of toxins in your body. Shaking them lose with nothing to mop them up is not a safe thing to do. Because you don't know where they'll end up.
If you are seeing active infection on a live blood slide, who is determining what that infection actually is?
I can totally understand the decision to go off antibiotics, btw, but going off with an active infection and no real ongoing direct treatment of it I find a bit baffling. But that's just me.
I wish you the best.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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i start year 5 of treatment in September....that said i have been at this very same point....in fact i'm still there ...slighlty....keep looking...could by KPU, metals, co-infection...can you imagine treating for over 4 years and just now finding out you have Babs? this despite never having air hunger or a night sweat...i swear the more you read the more i realzie that very little is the same from one case to the next....my point don't dismiss anything until you have tried to treat it....that's what i have learned..
i would have laughed at anyone 2 years ago if they said to treat KPU or have amalgams removed...get real!!...but i'm there...wishing i had pulled out all the stops before...i am now making progress again..
and just think i have had two very good, conmpassionate, knowlegable doctors... this crap is very hard to figure out.
Giving up is not an option.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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Maya12
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Well guys I think you are right on a bunch of things. I do need to be taking more binders. My doc gave me binders but I stopped taking them cause they made me feel worse.
Also was doing coffee enemas before till my puppy ate my enema ball.
I have been taking paracide as an anti bacterial, anti parasite treatment so I have been killing
But have a feeling I am just WAY to toxic and I am in fight or flight and will start the binders tonight.
Am also going to talk to my doc next week about stronger stuff.
I think the horrible mood stuff and constant negative anxious depressing thoughts come from the toxicity and the dan bugs fighting back.
Anyone else get constant negative anxious thoughts?
Also going to do the genetic testing
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Maya12
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Thank you all for your support and suggestions. How much and often do most detox?
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Maya12
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And can detox make you feel worse for the first few days?
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I was concerned about the place your at now so have been doing some research. I found this and remembered that other people had discussed it before. I would absolutely talk to your Dr. about it but Niacin is cheap and may really help. This is from a long article by Dr. K
For the psychiatric presentations of Lyme disease Dr.K uses large doses of Niacin (not niacinamide and no-flush niacin). 3-6 grams in 3-4 divided doses shows results. It appears that Niacin has tremendous antibiotic potential against all types of Borrelia.
Hope this helps Truesun
-------------------- Misdiagnosed for many years. Treated for many things besides the real issue. Lyme diagnosed April 2008. Parasites diagnosed recently. Past to both my sons. Trying to remain hopeful and thankful. Posts: 144 | From Ohio Valley | Registered: Mar 2009
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Maya12
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Wow thanks trusun, would you mind sending me the link to the dr k article, I will def talk to my dr about this
And sorry for the full mailbox cat girl , will erase some messages
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Maya12
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My dr is actually friends with dr k and German trained. They also speak at confrences together so I would love to see that article.
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Maya12
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And I want to try this,, thanks for doing the research
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I try to take a magnesium bath every day. Take charcoal once a day as well.
My daughter tells me that getting rid of heavy metals can mess with your emotions. You might find a restorative endocrinologist helpful to guide your metal detox.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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-------------------- Misdiagnosed for many years. Treated for many things besides the real issue. Lyme diagnosed April 2008. Parasites diagnosed recently. Past to both my sons. Trying to remain hopeful and thankful. Posts: 144 | From Ohio Valley | Registered: Mar 2009
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Phoiph
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Maya12...
I was like you...NOTHING EVER worked for me until I found hyperbaric. I am well now, no medications...no restrictions...I have my life back...
glm1111
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posted
Maya,
Adding salt/c to the antiparasitic herbs is what made a huge diff for me. I also agree that you need stronger antiparasitics and enemas. Killing the parasites is essential. Salt/c may just be the kick you need to get rid of some of these infections.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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I'm thinking that maybe you should be on antibiotics? I know you did them for a while bug I don't think you gave a fair enough chance. Right when you COULD have been turning the corner you stopped seeing that llmd . I think it's time you gave it a fair chance
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lax mom
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Can you take something to relax you? All of this worrying can only make you feel worse.
If you don't want to take an Rx, what about something like Xymogen's Relaxmax? I have some and am going to take a scoop tonight.
I am focusing on calming down my autonomic nervous system (since it controls everything in the body), lowering inflammation and detoxing with a portable FIR sauna 1x/week. Plus taking a little bit of the one antibiotic that I know helps me, Minocycline.
I have been doing the Headspace 10 minute guided meditation each day (It's free for 10 days), and I actually feel better afterward.
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