Jordana
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posted
Yes, that was exactly the point of asking the question in the first place, in the spirit of Dr H like dissection. He is in fact one of the people I was referencing who are "resoundingly positive."
So you can espouse the belief that there is no hope, or you can take the tack of the LLMDs and LLNDs who don't believe this. If you're with the latter then "why I am so much sicker" is a valid question. If you're with the former then I'm going to expire after a too-long yet valiant battle with an incurable pathogen and it's best not to whine about it publicly or question my position among the dead, dying and incurable because I am simply being rude and insensitive to all of us doomed fellows.
Yes? Ok. But then you have to take the same advice yourself.
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Keebler
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- A tact of considering only polar opposites can be tricky. -
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Jordana
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What's tricky is explaining to someone that they have no right to question their death sentence because it's rude to all the other dead people.
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Jordana
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One day someone with Lyme is going to come along and ask Google " Why am I sicker, why am I sicker than everyone..."
I am the person who asked the question; but I hope everyone here is satisfied with their contribution to the answer.
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Keebler
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- The web can not only "loose" voice tone but, somehow, it seems to toss in tones that are not in the actual message when we read which can really blow stuff up.
For questions asked, there were various replies, all which attempted to explain some ideas in answer to your questions - without judgment. There may be some statements of thought or emotion from various posters, yet, still, all objective and putting things into perspective.
It might be helpful to read replies in a neutral tone of voice, just as information. No doubt emotions are tender around such a rough & tumble illness and all that brings with it. Just don't read in voice tone or intent that is not there.
We are all trying to help via attempts at explanation, sharing information / perspective. -
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bluelyme
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Only the sith deal in absolutes " I wax and wane between both points of view ..did david martz or others on here add years on to their life by tolerating treatments ...?..
I wish i had ibs or hot ears to complain about but its vertigo and muscle wasting ! Some people here have helped me have hope in the torture that is treatment to escape the torture that is lyme .
i now hate what i have become ,as much as i hate these pathogens for doing what they do to you. No amount of spite is going to get these collagen loving microbes out of our brains .
..as likely no amount of abx is either ...i like you have more to offer the world and appriciate the useful and useless links and the playing of the devils advocate
I read somewhere that abx in lyme is like trying to kill a snake with bugspray....im gunna try more alinia and ivermectin after this riffy bs
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
What kind of diet do you follow BlueLyme? I really enjoy black tea, unsweetened. Not for health reasons, just because I thought it wouldn't make Lyme worse. I saw Yolannda Hadid's diet excludes black tea among other things. I know this is kind of off topic but that's how my brain works.
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Jordana
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How's the rifampin going blue?
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Phoiph
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Jordana...
I'd like to respond to some of your comments.
1. This disease is curable. I am cured. 2. "Chasing bugs with drugs" is not the answer for everyone. 3. Never give up...but be willing to give up that which is not serving you. 4. There is a "Plan B".
Months ago, I offered to help you with mHBOT. The offer still stands if/when you are ready...
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bluelyme
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Like a person without arms I cannot hang -with the rifampin .is pulsing it bad ?
..i have been gf ,soyfree ,bovine df ,and sugar free...giving up grains is hard ...
Posts from phioph and brussels and tf help so much i cry
quote:Originally posted by Jordana: I mean actually if you took the sum total of very dreadful artifacts -- people on abx for 20 years; people who took abx for ALS and died anyway, people who have been trying to kill this infection for 30 years, people who are dead now, institutionalized, bedridden for 30 years, haven't walked on their own since one year post-tickbite, you could say that all these conversations are hopeless and have no point at all.
Never give up! Is kind of a mockery in that context.
This is pretty much where I am at this point.
No one knows why we are sick or how to get us better. In my opinion, that includes the very "best" LLMDs.
The science is severely lacking. And scam therapies abound.
I just heard of a therapy today that costs $4,000 for a 60 day run. And, naturally, they have all kinds of testimonials for miraculous recoveries. And we are so desperate that many will fork over the money ...
The main problem is that some therapies seem to work, at least to some extent, for small populations of patients. That gives a false sense of hope when we don't know why these therapies work for some, or even why we are sick.
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FILARIAL WORMS
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Jordana
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Well, you know -- "never give up" is a mockery because of course no one is giving up. If they have a single brain cell left to survive they are going to keep trying to get better. There is no choice at all in this, we're going to keep trying just like we keep breathing.
The problem is we all have limited resources and because this illness so badly defined anyone could spend everything they've got doing the wrong thing -- and then there are the champions who lucked upon the answer for themselves. Two years of antibiotics and one person says oh yay I'm so much better, I'm really a much better person for this experience; the next person says um I just spent two years getting sicker.
I would spend the 4K if I were convinced. I'm probably going to end up spending all of my money and some of other people's money to figure this out because basically there is only one other choice.
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randibear
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posted
i understand exactly what you mean and often feel the same way. if I listed my symptoms it would be as thick as the book war and peace.
some days I jus want to crawl in a hole and tell the entire world to gth...
I don't go out much cause people irritate me and that's the god's truth.
you are absolutely not alone.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Persistence Co-infections Cysts Candida Heavy metals Biofilms
Until something real comes of this, fiarial worms are just two more words, like those listed above, that won't get anyone better.
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Phoiph
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Actually, many people do give up...by accepting status quo and believing that there are no answers and the situation is hopeless. I am here to tell you that this is absolutely untrue.
Also, I don't agree that those of us who have become well have exactly "lucked" upon an answer. The answers came with years of suffering and struggle. This is why many of us choose to share our stories...in the hope that others may suffer less.
IMO, one of the most dangerous aspects of this disease is the destructive effect it has on one's will. It also seeks to confuse, divert, and derail thought processes and keep one in a state of inertia. I call it the "Lyme Vortex".
For example, how many people continue, repeat, and defend the same treatments for years, even though they know their bodies are becoming more ill? Nobody would do that to themselves if they were thinking clearly. Lyme makes it difficult to see the obvious. It is very important to be conscious of this aspect of the disease, as to not to become mired in the quicksand.
IMO, it is important to keep an open mind, because wellness is possible, and may even be closer than you think. I never, ever believed it was possible for me to become well again; much less live a full life, med free.
My case was severe, and considered hopeless. I was told I needed a miracle; that nothing more could be done. Thankfully, the LLMD's are not always right...
I have written extensively on how I used mHBOT to become well, and am willing to help anyone who is interested. I suggest starting by reading all pages of the mHBOT thread. You can follow other's journeys there as well. There are also many other people outside of LymeNet who are having success and getting their lives back.
me
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posted
quote:Originally posted by Phoiph: Actually, many people do give up...by accepting status quo and believing that there are no answers and the situation is hopeless. I am here to tell you that this is absolutely untrue.
Also, I don't agree that those of us who have become well have exactly "lucked" upon an answer. The answers came with years of suffering and struggle. This is why many of us choose to share our stories...in the hope that others may suffer less.
IMO, one of the most dangerous aspects of this disease is the destructive effect it has on one's will. It also seeks to confuse, divert, and derail thought processes and keep one in a state of inertia. I call it the "Lyme Vortex".
For example, how many people continue, repeat, and defend the same treatments for years, even though they know their bodies are becoming more ill? Nobody would do that to themselves if they were thinking clearly. Lyme makes it difficult to see the obvious. It is very important to be conscious of this aspect of the disease, as to not to become mired in the quicksand.
IMO, it is important to keep an open mind, because wellness is possible, and may even be closer than you think. I never, ever believed it was possible for me to become well again; much less live a full life, med free.
My case was severe, and considered hopeless. I was told I needed a miracle; that nothing more could be done. Thankfully, the LLMD's are not always right...
I have written extensively on how I used mHBOT to become well, and am willing to help anyone who is interested. I suggest starting by reading all pages of the mHBOT thread. You can follow other's journeys there as well. There are also many other people outside of LymeNet who are having success and getting their lives back.
Nice to "see you," Phoiph, and thank you for some inspiration.
So, I have to admit that at first I thought mHBOT was completely hokey. Then, I became friends with Lymeboy and have seen his improvements (he was extremely ill and at the breaking point). Phoiph helped him access mHBOT (btw, his site is back up),
He's healed a lot, and plans to give an update and help others, but he is still healing and has a lot going on. The improvement in him is nothing short of miraculous.
However, I admit I *still* had major doubts about mHBOT. So, I tried one session at my doctor's office and herxed a whole new kind of deep down in my bones herx. I thought, whoa, maybe this isn't so hokey.
Got a chamber about two-three weeks ago.
Phoiph helped guide me through the process, and for the record, Phoiph gets /got no kickbacks. In fact, I went with a different place than the place Phoiph is most familiar with and Phoiph knew that. Phoiph just helped guide me through it bc he/she is a good person and gives his/her extra time to help others try to heal. Just had to put that out there.
Anyway, I herx after mHBOT. i get muscle and joint herxes after it and even more tired. My LLMD has a chamber in his office.
So there is something to be said about mHBOT. Will I recover? I dunno. I hope so. I can say mHBOT makes me herx and has helped people recover.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Jordana
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This is really good information, Phoiph and me. Thanks for your thoughts.
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me
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posted
Good! I increased the time in my chamber today and my muscle and joint aches really increased. I'm walking in an awkward manner bc I'm sore.
The soles of my feet are extremely sore. I usually walk around the house without shoes, but I had to wear shoes bc they were so sensitive.
Phoiph is the resident expert on mHBOT, but I will help you if I can.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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bluelyme
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Is it killing or healing ? Are you still on abx me?....do you have babs? Sorry thanks
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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me
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posted
Hey, blue. Yep, still on abx. Have Lyme, Babs, and Bart along with mast cell activation disorder, and the list goes on. From what I understand, it's both. Again, Phoiph is the expert.
So basically, there is research that shows bacteria such as Lyme can't live in highly oxygenated environments under pressure.
At the same time, it has many healing aspects, such as boosting the immune system. From what I understand, it has to do more with healing. But I'm not as informed about it as I am other things relating to Lyme.
I just know I've seen it work for others, I herx with it, and when I did the research, it made sense. However, much of the research I did got lost in my Lyme brain.
It is FDA approved to treat other conditions (not Lyme, of course), and you must have a prescription to get one. A lot of athletes use them to help their bodies heal quicker post injuries.
So go with the info on this site or from Phoiph to check my accuracy on this matter, bc I have no problem admitting that I'm not the greatest source of info on this matter. This is a great site for detailed info:
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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Phoiph
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Thanks for all the kind words, me!
Bluelyme...I had severe Babesia and Bartonella, multiple high viral titers, plus gut pathogens, severe dysbiosis, etc. I was not on antibiotics for 5 years prior to starting mHBOT, as they had made me gravely ill and chemically sensitive.
And, of course, I had a highly neurological strain of European Lyme (Garinii). I had chronic encephalopathy for years, was down to 5-6 foods, became homebound for over 5 years, in unbearable head and nerve pain 24/7, etc. My situation was very grim.
Me is correct...mHBOT has both killing and healing properties, which IMO makes it superior to other Lyme treatments.
Strengthening the immune system allows pathogens to be affected both directly by providing an inhospitable environment, and empowering immune function which allows the body to start taking care of business again.
It is also the only known treatment to promote nerve regeneration, and is becoming known as an effective treatment for Veterans, as it treats both blast/head injuries and PTSD.
Bluelyme...some people's posts stand out to me. I've wanting to help you with mHBOT for a long time...give it some thought!
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me
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You bet, Phoiph. I couldn't have done it without you, despite what you say!!
I've chatted with bluelyme before, and I think you are correct, Phoiph. I think it could be very beneficial to him/her based on what I know about his/her health issues.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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MannaMe
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Phoiph, How does the mHBOT work for someone with MTHFR who doesn't detox well?
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Phoiph
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MannaMe...
That would likely be the majority of people with Lyme...
mHBOT is an effective detoxifier...as it restores the metabolic processes at a cellular level, so nutrients can enter, and waste products can leave the cells.
It also assists all the organs of detoxification to work more effectively.
The more toxic one is, however, the slower they must work up to the full protocol.
Also...the good news is that genetic snps can be turned on and off, depending on what illnesses/stresses/demands are on the body. Many issues that are present when one is chronically ill can reverse/retreat to the background once someone regains their health.
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D Bergy
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If you lose hope, you lose your chance to get better.
Nobody proceeds in something where they percieve no possible hope in succeeding. The saying "if you think you will fail, your probably right" sums that up.
The ones that have given up are most likely not posting at all. You can pretty much count on the the people posting here as in the "not giving up" camp.
Why some people remain ill for a long time is difficult to pin point. I recall one person here that was ill for a long time and found out they had a condition that was relatively rare, that was completely unrelated to Lyme. That was their answer. Doesn't happen often that way, but is one of many possibilities.
It's trial and error and testing what others have found to help. What helps one person may not help yourself, but odds are what has helped some person is going to help you but it has to be tested individually.
I had to find a way to treat without oral methods or antibiotics or a doctor. My wife was getting more ill by the week and could not even get a correct diagnosis, much less treatment for it. Given I am from a fairly self reliant part of the country, and my personal belief that there are very few unsolvable problems, I went to work full time researching, testing things, failing, trying again, failing again, trying again, some success but not enough. Repeat, repeat, repeat, some success, more success, failure, so on and so forth.
In the middle of that I was diagnosed with Crohn's disease. Dealt with it the best I could. Keep treating my wife, she is doing okay now but relapses fairly quickly. I am getting sicker, and I can't treat her if I am incapacitated. Surgery to remove a stricture, recover somewhat, but not 100%.
Now working on Lyme and Crohn's simultaneously. Wife is doing a lot better now, still has Lyme but have eliminated babesia and Bart is on the ropes. I get real sick and am totally disabled and in intense pain for weeks. Get septic and home nurse says I might die if I can't get my heart rate down. I have to be hospitalized and another surgery to remove a good chunk of my guts. Better after but still sliding down hill.
My research pays off big time. My last of many offenders is mycoplasma. Treating it quickly brings me back to life. I refine my treatment more and am able to continue treating my wife, although she is doing very well with occasional treatment now.
My son has hydradenitis suppurativa. I am also researching that. H-Pylori is involved, that much I have discovered, but it is not the whole problem. Daughter has celiac sprue. Researching that, have no clue how to resolve that yet.
Crohn's is incurable. I don't believe that for one minute. I am not cured, but I identified and treated four possibly five pathogens that cause my symptoms. I made more progress against that disease than anyone I know. It's not because I so smart. I am average at best. It because I refuse to give up and I am open to plausible solutions not typically used in modern medicine.
No matter the disease, there most likely is a solution. It may not be commonly known, or even known to anyone, but it is there someplace. The trick is how do I go about finding it?
I use all sources. Anectodal accounts like here at Lymenet. Official research. Unofficial research using alternative methods. Ok, I have a possible problem I have gleaned from others or research. How best to resolve it? Lots of possibilities. Pick one. Test it. Success or fail. Move on if a failure, refine if it helps. Move on to next possible problem, repeat.
Try random stuff once in a while. My wife and myself both tried MMS. Of course her stomach have out on her on a few weeks, but it cleared out a lot of garbage in that time. It cleared out some E-Coli in myself. Part of my solution but not all of it.
MMS was thought to be a sure poison at that time. Probably the most helpful, cheap treatment on earth today. Not that you don't have to be careful with it, but not many things disinfect and detoxify at the same time. It's not a cure forvlyme, although it kills active Lyme quite easily, but it also kills a lot of infections we do not even know are present.
I am currently testing black seed oil to see if yeast is an issue for me. I am well, but it doesn't mean I am 100%.
The point of it all is don't give up. Don't limit your tool box to just what the doctor can use. Don't be afraid to test things in controlled safety conscious manner. Don't be afraid to fail. It's an important part of succeeding.
Ok, way to long and rambling.
Good luck
Dan
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ukcarry
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No, Dan, not too long: a really terrific post. I should like to congratulate you on the way you and your family have faced multiple problems, confronted them and described them in such a clear and constructive way.
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Ditto that to Dan. I really appreciate reading your post.
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Jordana
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Thanks for that, Dan.
I woke up again today thinking I'm going to die.
I didn't feel this way in the beginning at all. I thought I would figure it out...kept pushing the timeline; well, in a year you should be somewhat better, in two years it seems like some people have lives again, etc.
Fact is though I'm starting to think this is not how it's going to go for me at all. I keep trying to think of who I could go to for help but outside of Lymenet and some books, etc; there's no one to ask about this, partially because I don't have the energy to do it. I keep thinking about writing to my LLMD but I don't think she'd have anything for me but IV antibiotics which I think I'm too debilitated to handle or manage.
Things that did seem reasonable or manageable or possible to do a year ago seem way too complicated to me now. IVIG and all that. Who would I even ask, who determines this, how do you do it. HBOT even or rife. I'm too sick to understand it.
The thing is I know what's happening. I have/had chronic meningitis and vasculitis everywhere. Talking for a little while makes me dizzy and tired. When I move my leg I can feel my whole body swaying afterwards because the nerves aren't connected to my muscles correctly. My shoulders are not stable and can't hold my head up. I mean I can and do but it's a struggle. Sometimes my back and abs don't want to hold up my shoulders. I'll never forget the day that I was trying to talk on the phone to someone and the back of my tongue started to vibrate just like the rest of me does.
I've felt fireworks going down my arms, just exploding. I've had the sensation that carbonation was coming out of every joint in my body and disconnecting it from the muscle. I've had days where I can't use my neck -- I mean it's so bad I'll just lay my head down and it feels like my neck is a stalk that can't support all the structures inside it.
I can feel my cerebrospinal fluid pumping through my spine, pooling at the top and the bottom.
Could a Dr J save my life? I have no idea. I know that having scoured the internet now for two years my symptoms do not seem like other people's. It's not "muscle twitching" or "fatigue" -- the whole system is failing.
I really really hope that this is just the mino talking and in six weeks or something I'll be able to say oh that was just a phase of this and it's better now; and maybe then I can think about some other therapy. I hope that's what happens.
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Phoiph
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"...who would I even ask, who determines this, how do you do it. HBOT even or rife. I'm too sick to understand it."
Jordana...maybe you missed the part of my posts that offered to help you with mHBOT?
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Jordana
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Sorry -- I didn't Phoiph, I'm just really tired.
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Phoiph
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It's quite alright, Jordana...I get it...I've been where you are.
Sometimes you have to get to the point where you realize that you might not be able to "figure this out" with your usual methods of problem solving. That might be part of your journey...to realize that you're not in control of this ride...I know it was part of mine.
Just know that help is there for you...
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Thanks for that, Dan. 
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