Jordana
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I've been off abx and all treatment for almost two weeks.
This was pretty bad. It took about a week of sleeping around the clock, eating nearly nothing, a random three day fever and lots of prayer that my nervous system would come back to feel like I was actually still here.
Now what?
I seriously don't know what to do.
My LLMD is offering ozone, herbal therapy, UV light, colloidal silver.
The abx regimen I was on was pretty standard. mino/rifampin daily in standard doses. Not IV; no really high doses or anything tricky. I was doing BVT also.
For the past two weeks I've done nothing because I don't know what to do.
I don't understand why I crashed with such impunity and I don't understand why, in ten months, my "bacterial load" is still high enough to drive me to log a "crazy woman" visit to the ER. I don't understand why I'm not even slightly better. I read accounts of other's experiences pretty voraciously and ten months seems long enough to see some kind of response or some improvement somewhere.
Should I be going out to DC?
Should I just try again?
I can't do nothing at all.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
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Happy halloween jordana....do you read taras will there be cake ?... she sees dr j . Has spent 200k in 2 yrs and is only slightly better ...she had a picture of a queen size bed with every iv and rx she put in her ...are you ready for iv ?
I skipped a and b went to c... bvt and iv abx but i want to live dammit ...
I say restart bvt ,get some iv mag and glutithione to help detox ..get a baseline then add oxidative or pulsing iv
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
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Yes I read her stuff. It's not the 200K -- if I thought Dr J had the magic answer I would find that money somehow. It's the effort and suffering involved -- I really don't think I'm strong enough for either one.
If I can't handle mino and rifampin I have no idea what horrors await with IV. I would have to set it up so that I had nursing care I think.
My LLMD said that herxing wasn't dangerous; it just showed where the toxins were. Not sure if I agree at this point. I mean, yeah...I'm still here...but so is the Ehrlichia...
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bluelyme
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Iv rifampin is pricey like 600 a week .there is no more generic .i have learned to do iv on the go ..it is a steep learning curve but herx from andrographis and houttynia was harder than rocephin ..
.my friend had erlichia and bvt got it with iv h202...kill build kill ...but where is our build ? You got this ..fish cant swim backwards .foward you told me
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
$200,000 and not any better? Not a plan I would want to copy.
Herxing too hard IS dangerous.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
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J said.. "My LLMD said that herxing wasn't dangerous.."
Your LLMD is mistaken. Many have suffered and too many have died as a result of a herx. This was known to happen in spirochetal illnesses before Lyme was even "discovered".
"The Jarisch-Herxheimer reaction is a complication that can follow treatment of several infectious diseases. Its most severe form is in louse-borne relapsing fever; in this syndrome the reaction can cause death."
"Relapsing fever is a disease caused by one of the species of Borrelia. It is often misdiagnosed as malaria and can have fatal complications such as the Jarisch-Herxheimer reaction (JHR) after the commencement of treatment with antibiotics."
"Liberation of endotoxin-like materials (eg, lipoproteins) from degenerating spirochetes and concomitant cytokine production is the suspected cause of JHR and supported by the finding of lesional spirochetes."
Jordana
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Well it was dangerous enough to cost me 2K in ER charges and knock me literally into next week so I tend to agree with you TC.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Exactly .. and it also sets you BACK and it takes time to recover from it so you can start again.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sammy
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Despite fear of sounding stupid...
Why must you continue the whole protocol or change plans?Can you just hold the BVT until you knock the infections down some more with antibiotics?
As an outsider looking in, from reading your posts, it looked like the BVT was just enough to throw you over the edge into the deep end of a herx.
Would it be possible to slowly restart the protocol? Just the Mino at first until you tolerate that well, then add rifampin, etc...
Also, I've wondered if your doses might be too high. When I was on a combo with Mino, I was only on 100mg twice daily...
Whatever you do, Don't give up. Clearly you need treatment. What you did just worked too well... Learn from that and carry on!
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Jordana
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Thanks, sammy. You wrote exactly what I've been thinking. Abx only; no bees and lower doses.
This is what I came to since I do still have one known co-infection and only those drugs will treat it. In fact I really was not even worried about the Lyme when I started; I would actually rather treat it some other slower way. If it's going to be with me forever I've essentially got the rest of my life to treat it. i didn't care if I was "making cysts" or whatever.
I was also on 100 twice a day.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
My doctor always said, "The turtle wins the race."
(but you do need to consider the cysts... they hide the keets)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jordana
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Yeah this didn't seem like it was "fast." It seemed pretty standard, conservative even.
Hoo boy I read my ER report today. " Patient says she 'feels like she is dying," " on disability for two years with multiple complaints," " says she can feel her cerebrospinal fluid," "now believes she has Rocky Mountain Spotted Fever.."
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I agree with what sammy is saying. If bvt works so well to break up biofilm and stimulate the immune system, that could be a lot more than your body and detox systems are able to handle at this point.
Some people herx badly just from adding biofilm busters. Adding things that activate the immune system can cause all sorts of reactions, especially when infection loads aren't under control.
Like others have mentioned, it might be helpful to restart the meds just one at a time and increase slowly. If you have detox therapies that you know help you, stick with using them consistently so you don't add more variables to your condition.
Hang in there **hugs**
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Jordana
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You know that actually never occurred to me. I never thought BVT was breaking up that much biofilm or it wouldn't take two years to complete the protocol.
I really was doing it just in case I had babs, and for inflammation and immune modulation. Since it apparently took so long to kill off Lyme I didn't think it was really killing or even touching much of the Lyme. I also was trying to keep up so i wouldn't have to start up bvt again.
But maybe you guys are right, and it sent me over the edge. I am really not used to my body not being able to handle things.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Believe me, you have been hitting it hard and fast for quite awhile.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jordana
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But what about those people who are on like seven different exotic IV antibiotics and all that? It never seems like I'm doing enough?
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Tincup
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Knock, knock...
Who's there?
Your body.
Your body who?
Your body who is telling you you've been doing too much and to back off till you are stable again.
LISTEN TO YOUR BODY- not the rambling and proclamations of others.
bluelyme
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posted
Ellie said abx make biofilms stronger ...but my gains happened with both ...i am going to try riffy guess water sounds murky..hows your liver #s ?
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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LISTEN TO YOUR BODY- not the rambling and proclamations of others.
- yes
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Jordana
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well...according to the ducks my liver is fine, my bladder is fine, my kidneys are fine, my brain is fine, my heart is fine...I'm the picture of health doncha know Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I'm sorry to hear you are going through this! I know I'm probably asking a dumb question but do you have some drainers and binders on board to prep for the next step?
Jordana
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Not a dumb question! This past couple weeks I've done very little to detox because I couldn't eat and I was sleeping about 20 hours a day. I was drinking water and ensure.
But...got back on board with colestipol, ak gold, and all my baths are epsom; started drinking magnesium water, so I'm working back at least to basic detox.
I was looking at the biomat the other day, mulling it over.
I'm going to have a problem getting everything I'm supposed to get in me, I can see this now. I was thinking about adding activated charcoal but it gets to the point that you're wiping out nutrients as fast as you swallow them.
I just got back to eating food the past couple days.
I'm astonished that I'm recovering at all at this point.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I'm glad you are recovering! That's a good sign.
I bought 2 Biomats and I find it to be a cozy thing but what I think is way more effective is the Therasage portable sauna.
We tried doing the sandwich between 2 biomats and turning up the heat but it is cumbersome and heavy and not that comfortable.
It was hard to get the neck. I know they have a pillow but I had already spent a fortune on the mats.
I tried the charcoal and I felt like it was not for me. Then I tried Diatomaceous Earth and that is wonderful. I did not expect my waistline to go down on that but it did! (miracle) It does not seem to bother my stomach like charcoal. But every one is different.
There are some homeopathic organ/body detoxers that would be easy to take. We like Lymphohepat and Toxicleanse by BioEnergetics.
Grounding also helps. We use a nifty little unit that one can strap on the ankle or wrist. I like it because it is improving the terrain of the body. It helps to bring down the inflammation.
Sending you good vibes!
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Jordana
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Thank you lookup.
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Phoiph
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Jordana...
I hope this post doesn't offend, as I feel the need to be direct.
I intend this with all due respect from someone who has "been there" and found their way out. I'm writing out of concern and in hopes that you avoid some of the misconceptions I had and the mistakes I made.
I find myself trying not to read your posts because I am very frustrated and concerned about what you keep doing to yourself, over and over.
Your focus is on finding more bugs and different drugs to take, to hopefully kill more bugs, to the point that you crash dangerously end up in the ER. And then you wonder why...?
Can you at least entertain the idea that bug-and-drug chasing might not be the methodology that works for your system, as it wasn't for many of us?
IMO, with your symptoms, your biggest issue is not bugs right now, it is your neuro-immune disregulation. This will spiral out of control (as it did with me), into an inflammatory cycle (e.g., encephalopathy) that can cause the symptoms you're having. Your gut is a crucial part of this system which also plays a major role. Obviously, based on your many reactions and worsening over time, you have to question your methods.
In my experience, this is not how healing takes place. If that is your goal, you must rebuild a foundation and create an environment so that your body can regulate itself again...otherwise, you may be chasing your tail for a very long time.
Although several people here who have become well have tried to share other options/opinions, you comment that you just don't know where else to turn. There are other ways to do this, and there are people here that can help...but if you are currently dialed in to only one methodology, you may have to adjust your focus to find your way out.
Just some food for thought...I hope it is helpful.
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Jordana
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Phoiph I'm not offended at all.
What I am is confused. I have probably read everything on the internet there is about this disease. I have read every book there is on amazon. I own all of Buhner, I've read Pamela Weintraub. I've read Why Can't I Get Better, I've read Lyme MD, probably a million Lyme blogs.
This is the thing: pretty much everything I've read is doing exactly that -- chasing bugs with drugs. Even *my* LLMDs are doing this; even LymeMD is doing this. Everyone "in treatment" on youtube is doing this. Even the bee people have this mindset.
So when you talk about the neuro-immune inflammation cycle, it seems to me that *most* people treating Lyme simply ignore this and assume this will re-regulate once they kill the bugs, which takes a long time, and what I understand about it is that a person just has to tolerate it until their treatment is done.
You are saying something radically different, which is forget the bugs and just re-regulate the immune system. I'm not discounting what you're saying AT ALL but since I started all this about a year ago I've just been trying to do what everyone else is doing, what seems to have worked for a lot of others ( sort of) and what LLMDs in their conferences all talk about, all the time.
The reason I am hellbent on doing it this way is because according to these people the risk of not killing the bugs is the end of the cautionary tale. If a person can not tolerate treatment, their disease will progress to utter destruction. The moral of all the literature seems to be that if you appear to have ALS for example you can get IV antibiotics and get better; if you've been misdiagnosed with MS and spots on your brain what you need is ceftriaxone..etc. That's what I've read -- over and over and over - from what must be thousands of sources now. And they all say...well for two years I believed I was going to die but I stuck with the program and I was well again.
There's a blogger who went to Dr J and has narrated her whole ordeal of heroically throwing up until her face turned purple and taking massive seizure medication and so on for two years. There is a youtuber who believed he was not going to live through his treatment. And there they are on the other side, smiling.
I was offered the name of a "better" LLMD and this LLMD treats with antibiotics. I talked to another "famous" LLMD -- he was the one who prescribed the protocol I took that put me in the ER. I've really been mulling over what I have to do now to tolerate treatment and frankly I don't know the answer. But I know that according to ALL sources I've read the whole game is to kill the bugs.
Really this is what I thought this all was. Am I wrong? Are *they* wrong?
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Phoiph
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I have a completely different perspective and approach to the problem, as do many others, because I was deemed an "antibiotic failure" myself. For me, the solution did not come from any of the books, articles, or resources I had worked so hard to focus on for years with my impaired Lyme brain.
The truth is, in spite of all of your research, you have no real idea of how many people these "traditional" methods work for.
We are very, very under-informed.
I truly wish these "sources" of which you speak (which, BTW, we protect and don't talk about out loud) would be required to publish statistics on their recovery rates. After all, it is your life and your health; you should be informed of the risks and returns of what you're investing in.
To answer your question...if "their" approach, which is broadly publicized and been around for decades, worked so well for so many people with CHRONIC Lyme (not talking about recently infected here), then there would no need for Lyme Net, would there?
Everyone would be getting well, everyone would have answers. Do you see that happening? Look how many people are still suffering, despite years of the same treatments! Believe me, I have worked with dozens and dozens of these people, and their stories are remarkably similar.
My point is, your approach works for some, but certainly not all. If you don't fall into that "works for some" category, and you realize at some point your efforts are more destructive than constructive, then it may be time to look in another direction. You can always return.
Be aware of what is driving your behavior. Don't let fear and fixation on "doing what the masses are doing" cloud your common sense. Opening your mind will give you more knowledge. In turn, more knowledge will give you more choices and opportunities.
Talk to more people who have become well or are remarkably improved and living life again. If you don't know any, ask me, and I'll send some your way.
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Jordana
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What you're describing is the very very dark side of Lyme.
When you're trying so hard to get answers it's impossible to allow the idea that there really are none in spite of the declarations of Dr. B and Dr. H.
Then there are these impossible conundrums. No prednisone even though it is the fastest way to lower inflammation, which is the real culprit behind Lyme symptoms. According to Lyme MD's all kinds of herbs and substances are offered to lower inflammation, But inflammation is great according to the bee people so don't take anything to stop it because this is what causes the "healing crisis."
What the hell, am I in a healing crisis or just a crisis? Am I supposed to get worse or am I supposed to get better or am I just supposed to drink green smoothies and wait for the next shoe to drop?
I don't think it was your Lyme brain. At a certain point none of this makes any sense and there is no longer any logic to follow.
HBOT does make sense from a biological perspective as a healing modality. I believe what you are saying for a lot of reasons.
But it leaves the question...what about the bugs?
Posts: 2057 | From Florida | Registered: Feb 2015
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My advice to you is simple. Ignore the herxes. Think of Lyme as a battle and that youre gonna stand there and hold the wall no matter what comes. There are so many times in my first couple years of major multiple antibiotic treatment that I felt just like you, like I couldnt take it. But the antibiotics will ultimately not hurt you, and over time the reactions get less and less until you donr even see most of them anymore. When you attack lyme you piss it off, but if you let up youll never get better. You have to understand something. It is the Lymes goal to make you feel like you can't continue treatment. It purposely makes you in the early stages waiver like you are and I did before. Its trying to survive and it controls most of your body including your central nervous system. But youve got to be stronger than the impulses from it. There are many parasites in nature that affect host physical behavior by altering their brains and changing their decision making.
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Jordana
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Thanks for your thoughts Christopher.
Phoiph is a long time Lyme sufferer who ultimately sustained severe tissue damage from antibiotic treatment, as I understand it. She healed herself through multiple mHBOT dives.
I was saying to her that your sentiment, "ignore the herxes" - is a confusing one to people like me. There is one camp that says "listen to your body" and another that says " totally ignore your body."
This life, death and liberty we're talking about so choosing which advice to follow has immense long term consequences.
Posts: 2057 | From Florida | Registered: Feb 2015
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quote:Originally posted by Jordana: Thanks for your thoughts Christopher.
Phoiph is a long time Lyme sufferer who ultimately sustained severe tissue damage from antibiotic treatment, as I understand it. She healed herself through multiple mHBOT dives.
I was saying to her that your sentiment, "ignore the herxes" - is a confusing one to people like me. There is one camp that says "listen to your body" and another that says " totally ignore your body."
This life, death and liberty we're talking about so choosing which advice to follow has immense long term consequences.
I know it makes you feel like you're going to die when you take antibiotics. You're not. Trust me. Lyme has a tendency when strongest to give strong melodramatic probably self protective emotions through its control of your nervous system. I can not only relate to what you are saying but also can almost feel that strong feeling again of wanting to stop. All I can tell you is what you will find if you soldier on and just keep pounding it with varied cyclical antibiotics that any good LLMD will put you on, those symptoms go away. I mean today I can pop 5 antibiotics and feel nothing, thats how much it has reduced my Lyme load.
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Jordana
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This is the advice I have been following. I believe you. I appreciate the support.
I also believe Phoiph.
So... Posts: 2057 | From Florida | Registered: Feb 2015
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Phoiph
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quote:Originally posted by Jordana: ...I don't think it was your Lyme brain. At a certain point none of this makes any sense and there is no longer any logic to follow.
HBOT does make sense from a biological perspective as a healing modality. I believe what you are saying for a lot of reasons.
But it leaves the question...what about the bugs?
I emphathize with your confusion and frustration. I felt the same way...as if I had entered a parallel hell where a + b no longer = c.
In answer to your question "What about the bugs"? mHBOT has direct kill properties, but more importantly, by re-establishing your immune function (which has been disabled, possibly by the infection and resulting snowball effect), it is able to take care of pathogens as it was meant to do.
Remember that we live with many potential pathogens in our bodies every day, but with a healthy immune system, these never become an issue.
We also live with necessary beneficial organisms, many of which are wiped out when trying to kill the pathogens.
The balance lies in the immune systems health and its ability to maintain homeostatis with the challenges of the internal and external world.
FYI...I'm not trying to talk you into mHBOT per se, no matter how much I believe it will help you. I am just hoping to find a crack in your armor to allow some other ideas in...
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Phoiph
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Christopher J...
I agree with you that Lyme totally messes with your mind, perspective, and judgment.
Did you become well with antibiotics, or are you still treating?
Posts: 1885 | From Earth | Registered: Jul 2013
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quote:Originally posted by Phoiph: Christopher J...
I agree with you that Lyme totally messes with your mind, perspective, and judgment.
Did you become well with antibiotics, or are you still treating?
So heres the sad truth with Lyme. It will never completely leave your body until we get the next round of advancements in biotech with DNA level etc. But I will tell you my life at 90% functionality is a night and day dramatic difference from the few years ago me which was at 10%. And all through those first years of antibiotics I had that morbid sense of fear that Lyme puts into you. It is virtually gone now, my joint pain is gone, my memory problems are gone, and most importantly that feeling of Lyme dread is gone. I have been on almost everything cyclically. Amox, Ceftin, Zithro, Bactrim, Mepron, etc and with each and everyone I felt scared when I started. If I stop them even today, itll come back again within a few weeks but its orders of magnitude weaker than it was before I found my LLMD. It makes life livable with Lyme. Thats the highest tribute I can say.
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Jordana
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Phoiph, meet Christopher. Christopher, Phoiph Posts: 2057 | From Florida | Registered: Feb 2015
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Phoiph
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Thanks, Jordana.
Thanks for the explanation, Christopher. I was wondering if you still needed to be on antibiotics to maintain your gains.
I'm very glad you're doing so much better than you were.
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I agree that we have to heal our immune systems. I've been thinking about this a lot the last week. Trying to figure out the double edge sword of antibiotics.
Hmmm. a few more things to think about.
Jordana. I don't know what drugs you have tried, but Mino made me CRAZY and much much worse. It was either hitting something hard or just crazy... not sure.
But I can relate to your 'crash' because that's what happened to me when I started mino. It was the first antibiotic I tried. Doxy did the same thing to me. I've done ok on other drugs with 'normal' herxes and normal side effects, but MINO almost did me in... literally.
Phoiph, can you build your immune system at the same time as using antibiotics? I feel like I'm making some gains with antibiotics, so don't want to stop, but I feel strongly I need to get my own body working to fight.....
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Jordana
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People do say this about both mino and rifampin.
I've been literally dreading trying to get back on that horse.
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Phoiph
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quote:Originally posted by HW88: I agree that we have to heal our immune systems. I've been thinking about this a lot the last week...Phoiph, can you build your immune system at the same time as using antibiotics? I feel like I'm making some gains with antibiotics, so don't want to stop, but I feel strongly I need to get my own body working to fight.....
There are definitely things you can do to support your immune system while on (or off of) antibiotics.
Of course, IMO, combining the above suggestions with consistent mild hyperbaric is key, and is what brought me to wellness.
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Thank you! I'm doing about 1/2 of the suggestions, so I will start to add the others. Thanks Phoiph.
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Phoiph
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Glad it was helpful. That author has many good articles...
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