Jordana
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I don't understand why I am so much sicker than everyone else. And I don't understand why, after nearly a year of treatment, the hits just keep on coming.
I was looking over my symptoms for the past year and it just seems like things are actually worse than a year ago. I've had so many scary symptoms that even one to a normal person would send them screaming to the hospital.
Right now after about a month of nonpulsed mino/rifampin I've got muscle weakness, disorganized csf draining down my spine, tremors, I wake up hot and exhausted, I feel like I'm completely losing my neck and shoulders.
I had this thing happen, I was talking on the phone a couple weeks ago and I realized the back of my tongue was fasciculating after I spoke.
The migraine I had a couple days ago was so bad I thought I was going to end up in an ambulance. I decided the best thing to do was to spend more time in bed because it came on the heels of a day where I was walking around the house a lot. Just lay down, don't irritate the spine or meninges.
I understand the concept that you need to get worse in order to get better. I also see now that I had a chronic meningitis before I restarted abx and that was why the first couple weeks were so rough -- I can even put the migraine down to *maybe* a monthly herx, even though it was extreme.
I am less functional than I was a year ago. I can barely wash or feed myself. When I went to see the LLMD I was having trouble staying erect and using my muscles to talk.
If this "nonpulsing" strategy doesn't work I don't have a plan b. I'm running out of road. I don't get it; I really thought after this long I'd be going the other direction.
Posts: 2057 | From Florida | Registered: Feb 2015
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i'm sorry you're going thru this. Likely you are sicker than some, but not all. I tend not to share as much because I've had this for 20 years and respond so poorly to treatment that I don't want to discourage others from trying what might help them.
So know you're not alone.
Posts: 857 | From northern california | Registered: Dec 2009
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Keebler
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- I echo others' replies and, like dogmom, have had this more than 20 years and also rarely share even a tidbit about my very poor state of health so as not to discourage others who might have better access to good treatments than did I.
Still, in Pamela Weintraubs book, "Cure Unknown" & in the documentaries "Under Our Skin" and "Emergence" no one got all all better in a year's time.
TF reports here often that after she floundered a couple years with less than the best LL doctor, how truly assertive / direct treatment with some support measures helped her to remission in a good year. Still, that is very rare.
It's just not realistic to think that treatment is going to make one feel better until nearly in remission. Sorry. It's just the way this goes, though. It is rough & tumble all the way through for many. For many, it's 3 or 4 years even if on the right path.
And each person has a unique set of infections, etc.
Still, you might assess if you have the best LL doctor you can obtain. Or other ways. It also might be that your plan is too aggressive in some ways. That balance is hard to find. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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me
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Jordana, First off, I'm sorry you are feeling so ill. Hugs.
Based on some of your other posts, it looks like you are combining a lot of stuff including antibiotics, herbs, and bvt. Maybe it's too much at once?
I did my second mHBOT treatment yesterday and decided it's too much for me while I'm still on my Iv antibiotics. I had a rough day. So, sometimes too much is too much even though we just want this over with ASAP.
I used to think treating harder and herxing harder meant I'd get well faster. I don't think that's the case. I do think one needs aggressive treatment, but too much is harmful. And I'm treating super aggressively, but my body said "that's enough" today--no more mHBOT til after IV abx.
Maybe check into seeing if you are combining too much. Also, consider seeing a better doc? I like mine a lot. TF recommended him to me. Not a long wait, either. You see him in person, then can Skype/ call for the next appt the next month, Skype/call for the following month's appt and then see him in person again. Repeat.
Also, I agree with many other posters. It's hard to gauge if someone is sicker than others. Some of us are as sick, sicker, or not as sick. It just feels awful no matter what. Again, I'm sorry you are having a rough time. More hugs.
-------------------- 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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Keebler
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- Some LLMDs / LL NDs insist on not allowing too strong of a herxheimer reaction, for various good reasons. I agree.
There can be direct, assertive action that does not result in too strong of a herx. Also, some liver support methods can be too much if a strong "event" detox approach.
Consistent "food" for the liver such as Milk Thistle, Dandelion and/or NAC can often be better than any strong "detox event" -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jordana
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Ugh.
Thanks for responses. I just feel inches from death sometimes, especially since I started this protocol. I keep thinking I never felt sicker in my life and then I get sicker.
I don't think there's anything wrong with this protocol; it makes the most sense right now. I just wish I could figure out if it's helping at all.
Posts: 2057 | From Florida | Registered: Feb 2015
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Keebler
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- While it's typical to feel awful for a long time, even with treatment . . .
Something is wrong. Your body is telling you that something does not make sense. There is no protocol that is set in stone. None. Something needs to be adjusted.
While there are certain aspects that are required of every protocol as in direct / assertive action and supportive action, still every protocol is to be individualized.
If your doctor is not interested in adjusting this to better suit you, it's time to find a different doctor.
If you are doing anything - anything - that the doctor is not aware of, be sure to tell them, too.
The doctor's experience matters so much. If you are experiencing such harshness, what are they suggesting you do to mitigate that? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jordana
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Ah, sammy, I'm sorry.
I think I might have upset some people with my subject line and didn't mean to at all. I know people are sick, sicker, ,less sick. with this; what I meant was I do read a lot of progress and improvement posts and it seems like the symptoms -- my experience - is different from what other people are describing. I used to search on symptoms all over the internet looking for company -- was this normal? What did it mean?
For example the typical narrative " I started taking antbiotics and eventually I felt much better."
Um no. Not over here.
This summer, when I was doing the pulse therapy, I had some very awful experiences, BUT I was able to feel somewhat normal at least one day a week. I couldn't really do much but I could clean and go to the store and stuff like that. I even had a couple of days that I felt totally myself. I ordered gluten free pizza and colored my hair.
Something changed in the six weeks I stopped all abx and went to BVT only. Over at BVt World they say that abx only suppresses the infection and you'll always have a relapse if you trust antibiotics, but what I was feeling was that the minute I started abx again I was touching some part of the infection that was not being addressed by BVT.
It was obvious to me once I started abx again that I was carrying a chronic meningitis and I can still feel the aftermath in my spine; or maybe it's still infected, I don't even know what to think about it. I'm also pretty convinced I have tularemia for reasons I won't go into.
Since I know what at least two of the infections are no matter how bad I feel I do not want to quit or change treatment, since there really is no other treatment. My LLMD could only tell me to stop or take a break or something and I don't think I can. There's no where to go with this but through it but it feels like a frank emergency every single day.
Posts: 2057 | From Florida | Registered: Feb 2015
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Jordana
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I just also want to say sammy that I'm a little surprised by your doctor. Who wants to be in a league of their own with this? An LLMD should know better.
Anyway you're probably not in a league of your own. You just haven't gotten to the part where you get totally better and your book comes out Posts: 2057 | From Florida | Registered: Feb 2015
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WPinVA
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Don't worry. You are far from the only one.
IIt sounds to me like you don't detox well. This is thought to be a big factor in who gets more ill - or who treats but stays ill.
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Jordana
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I do not detox well. I have the MTHFR thing and the "dreaded" 4-3-53 thing.
This is why pulsing seemed much easier with notable results I think. But you can't pulse with co-infections or they won't leave. I've been afraid since the beginning of how bad this would be and it's just four little pills a day.
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WPinVA
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Have you tested your home with the ERMI test?
Posts: 1737 | From Virginia | Registered: Aug 2011
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I have detox genetic defects too. I can't even take the meds you're taking. It's best to be working with a doctor who understands the methylation cycles and can help you boost the missing ones. I have such a doctor.
I do best with natural anti-inflammatories, and I'm just wondering if you've tried any - they help reduce the inflammational load.
The best one is the turmeric powder I get in bulk at the health food store - I dip empty 00-size capsules in it and take a couple a day. I feel muscle and joint pain relief fairly quickly after taking a capsule.
Next I'd say would be the mangosteen juice, for antioxidant potency. It saves my eyes and intestines, and I just think it's good for the whole body, as a great antioxidant.
Then there's noni juice and grapeseed extract capsules.
My prolactin count, which is a brain hormone, is dropping closer to normal with every blood test I do, so I know I'm going in the right direction.
I also do Vit D drops, Vit C, and Host Defense mushrooms for immunity.
Armour thyroid helps my metabolism - don't know if you need any thyroid help - seen by a blood test.
Been told to take more Biosil for collagen support.
Hang in there. You're doing the right thing to be inquiring here.
Posts: 13116 | From San Francisco | Registered: May 2006
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Jordana, just want to say I feel the same way every day. I wonder why no one else seems as sick as me. I can only be upright 5 minutes at a time or so, for maybe a total of 30 minutes a day if I'm lucky.
I have to lay completely flat the rest of the time. I can't even sit up in a chair. Many days I can't even open my eyes more than a few minutes at a time. The pain is unbelievable. My well-known LLMD actually says I'm sicker than most people though...
If nothing else, know that you're not alone. I wish I could post here more often, but I usually don't have the strength to type, even on my phone.
Posts: 748 | From Texas | Registered: Feb 2015
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Jordana
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I haven't done an ERMI test. I never pursued the mold thing since I can't afford to move anyway. I'm taking colestipol which is supposed to be the "toxin-clearing" part of the mold protocol.
Robin, 4-3-53 is a gene signature from the mold protocol which supposedly indicates a person is prone to get sick from both mold and chronic Lyme. I really don't know how much stock I put in it generally myself.
I'm sorry SickSam that you're in my boat . I don't have a lot of pain daily but at least once a week I get migraines that I'm sure will put me in the hospital. Starting mid-day I start getting tremors, my head starts to vibrate, I can't sit up either or talk for a long time; mild encephalopathy or the "stare-y sick" syndrome, fasciculations all over, blurry, double vision, shoulder weakness, and my left shoulder just hangs. I'm losing my whole left side it seems. Also I get this thing where it seems like my bladder is trying to rip away from the rest of my body and leave, has spasms and I have to pee like crazy, every single day. All kinds of nerve issues, twitches, tingles, etc. I totally get not having the strength to type.
At the beginning of this I read that you were supposed to keep a "Lyme journal" to keep track of symptoms. I can't think of a single one that's any better and a whole lot of them seem worse. I'm not even scared anymore, I just don't understand.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
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jm coming to terms that this may kill me ...it feels like pirrananhs at times are eating my hands and feet ...and the muscle wasting keeps on ...comparison will not get us anywhere ..
i am glad yo know some as bad as me have had Resolution with treatment ..and sad that some have not ...protect your mylien shieth ....wahls protocal was not 9 cups of gf pizza ..i wish .
i wish i also had a big counter triquarter ,that said oh rife bart down 10000 no borriela killed ...iv rocephin 20000 killed 100000 encysted ....2 tinadazole 15000 round form killed herbs 5000 ,iv silver 5000 etc etc..no such machine yet but i play the game anyway
also these bugs have/ are doin extensive damage to me and we must build the foundation to the house while it is still on fire or the house will collapse ....kill build kill
Are you on iv glutithion are you doing epsomsalts baths are you shoving coffee up u know where are you drinking lemon water and alka selzer gold ..i am less dizzy when i do that **** ...
my energy is a little more than some but i do not feel human. ..a year alsmost of stings and the joint pain didnt let up until iv abx ..and its not being as effective ...gall bladdwr and liver wont let me live on that ..but dark field test showed they are not in my blood
And maybe thats the best diagnostic tool we have ..scope it out ...or let someone else ...you found parasites ..did you id ? Did you supplement the b vits with shots or iv to protect your nerves and start your methlation ?..
My guess is you need hydrocobalamin rather than methy..to start your cycle ...are you using amino acids ? Your gut is not making dopamine ...mucuna bean extract is a source ..are you on chinese cats claw .or iv magnesium for nerves ..high dose biotin or high dose royal jelly?
Come on jordana ..get to ozone sauna ,...try alinia ..you have proto or babs or something causing the daily fevers ? Go down swinging !? Not just i ate them got worse trusted docs bs.
have you tried rife, homeopathy or kambo ? You still have fight can still form thoughts and type. ..i will ask ellie why you are still sick when i see het but she is on year 5 ..
.and my teacher is on year 6 ..1 yr abx 1 year iv h202 and rest herbs and bees ...lots of ozone ....project is on year 4 and read it took someone 11 years here on lnet Also mycoplasma took 3 yrs to resolve. ..3 yrs !!! ...some prison sentences are shorter than that .
how much meyers ,ala ,phoscholine ,ozone , iv silver have you shot ? Abx ?
so stink the gerbils outside the box ..kill BUILD kill You cant out think these infections or we would be well so would tincup and keebs and others ..curza 99 will be out next year but sapi said venom looked better ?! Aint saying just sayin...
Maybe change title to "why the f am i Still so sick ". And ok little less dizzy ,livedo down. Less stamina ,more pain ,some ok days ...is our last memoirs going to be us on this forum ? Sad ,i thought i was somebody once ...everybody was somebody once ,you still are jordana who?
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
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It took me a year to understand that Lyme never goes away and the point is to keep it suppressed. But you *can* eradicate co-infections a bit faster ( except maybe b duncani) and that frees up the immune system to suppress the Lyme some more.
We get tilted over by the co-infections and bashed by opportunistic viruses and that's how Lyme, which is extremely slow-growing, takes us down.
I think this is how LLMDs operate. They just keep chunking around the edges of the Lyme until there's nothing else BUT Lyme to deal with and then the longterm battle for real remission can start.
Dr R Wash's contribution was to push me to hit the gram negatives. I think I have a whole lot of them. If I wasn't doing BVT I would do ozone but it's supposed to dismantle the venom. Rife is the same, stirs the bugs up, not helpful with BVT.
So I am doing three things only. BVT, mino, rifampin. Couple of herbs, still taking CSA, RLA Coq10 and of course methyl supplements. I've got a bottle of LDN from my local LLMD. The herxes are spectacular and dreadful and I've got no energy for anything else but I'm still slugging blue.
It's not like we have a choice.
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me
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I hope you are have a better-ish day, Jordana.
-------------------- 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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Just another day, me .
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WPinVA
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[QUOTE]Originally posted by Jordana: [QB] "I do not detox well. I have the MTHFR thing and the "dreaded" 4-3-53 thing."
Honestly, I think this may be your answer. People who can't detox well may be sicker, or stay sick longer.
Better Health Guy has a blog post on this.
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Jordana
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Thanks WP.
Running an Epsom bath now. It's my big job for today Posts: 2057 | From Florida | Registered: Feb 2015
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me
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Glutathione Iv pushes have been a major help in my detox. Major.
-------------------- 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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I second the iv glutithion..and loads of mag has calmed the baby kicking twitchin...u are a slugger ...im at half dose riffy zith and roceph and full bvt and can barely hang
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Keebler
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- With baths, be sure not too hot nor too long. Cozy warm for about 20 minutes seems the best. A [clean} thin cotton or rayon scarf is nice in bath with you to have to keep front from getting chilled. -
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Jordana
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Thanks Keebler. It was a good warm one, and that's a good idea.
Hope you're feeling ok too today darlin.
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Brussels
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I just want to say to Sam and Jordana: you're not alone guys. Many have been in the the depths of the depths like you.
You can still sit and write. Some even cannot any longer.
For me, binders changed the course of treatment. Adding homeopathics was also really good.
I start to believe that lyme has a lot of similarities to autism, in a way.
The gut problems, the detox problems, then rage attacks, constant inflammation, allergies...
I guess, like autism, if you do not address the gut and detox, there will be always constant inflammation, and chronic infections find their best home in this situation.
Autistic people have their brains and guts full of chronic infections.
How about lyme sufferers? We too!
During lyme, I even felt like I was autistic, in a way. I was so bad that I closed myself in my world. Barely had any contact with anybody. I hated contact, as I had no energy, no wish, no pleasure in meeting people. I just wanted to sleep, to be left alone.
Treatment for autism is more and more going in the SAME direction as treatment for chronic lyme, I feel.
They build the gut again, avoid allergens, avoid toxins, clean detox pathways, take binders, glutathione, oxygen, take virus killers and other killers, treat mold...
So similar to lyme treatment, isn't it?
Posts: 6199 | From Brussels | Registered: Oct 2007
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"I don't understand why I am so much sicker than everyone else."
Good heavens, you obviously have no idea. This is just senseless in so many ways. I can't even begin to describe how much this rubs me the wrong way.
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Jordana
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Sorry if my phrasing offended you. Not intended.
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Thank you, I appreciate it. I do understand you are ill and having a rough time, but the phrasing is off, for many reasons.
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Keebler
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- It's very hard for me to phrase things - all the time, so that is understandable.
Yet, to those who are so very ill, to read that is sort of like the doctors who all say "well, you look just fine" so it's understandable that would be a huge clobber out of the blue. We may be able to write a few sentences here or there, but that does not erase the person behind the post.
Many here may not even be able to post at all.
Yet, for someone relatively new to lyme it is such a harsh surprise to be doing all they can and still feel hit so hard - it's a true Twilight Zone -- but it is not out of the ordinary at all (a year is rather new, considering the big picture but won't seem that way to the person who is dealing with a hurricane year, of course).
The thing is, too, there are hundreds, likely even thousands who are very ill with lyme / TBD and many don't even know lyme / TBD might be the underlying key to the whole thing. -
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Keebler
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- The first "Private Benjamin" film with Goldie Hawn.
Going through a rough patch in her life, nursing a hangover, a charming and charismatic army recruiter tells her character that if she signs up for the Army, she can choose her lifestyle and activities.
She'll have a lovely apartment and all will be a bit like a Club Med and she can choose a job that will excite her.
So, she get off the bus at Boot Camp facing the likes of Eileen Brenan and Morgan Freeman and the harsh realization still does not sink in.
She pulls the trainers aside and says with sheer certainly thinks she caught the wrong bus and tells them "uh, I must be in the WRONG army" and actually thinks they will just jettison her over to the posh unit.
We all got on the wrong bus. There is no Club Med in lyme land. Yet, we all find ways to forge ahead. -
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Keebler
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TOUCHED BY LYME: . . . First, to explore the personal side of Lyme disease and how it affects individuals and families.
Second, to highlight useful information for people seeking answers about this complicated illness. Third, to help foster a sense of unity and shared purpose among the many diverse members of the Lyme community. . . .
TOUCHED BY LYME: "A lost childhood: The hidden faces of Lyme disease"
04 May 2012
. . . She spent more than a year in a wheelchair. After 18 months of Lyme treatment, she can leave the chair behind and walk with a cane. . . . -
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Keebler
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. . . Our gallery seeks to put a face to the 5,769 people diagnosed every week while helping the public to better understand the difficulties faced by many in simply getting diagnosed.
Click any picture for details on each Lyme fighter’s journey. [Scroll down] -
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Keebler
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- The sad reality is that many just don't survive lyme / tick-borne disease. We need to keep them all in our hearts and minds, too. They must not be excluded from the overview.
Progress & Success Stories -
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Jordana
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Yes I realize how it could be taken now but I didn't mean it this way. I didn't mean "everybody else" as in you personally Notti Keebler Blue TC me etc.
I meant that all year I've been reading...I mean this is all I do all day between getting my treatment in - Lyme Lyme Lyme Lyme Lyme.
For the most part except for some truly heartbreaking and terrifying posts ( and obituaries) everything is mostly resoundingly positive. Start with pubmed -- "patient recovered with no sequelae."
Then the blogs - some abandoned, some full of positivity.
Better Health Guy.
People posting that they don't want to herx on their vacation to Disneyworld.
Hundreds of recovered back to help the masses.
All LLMD literature. Resoundingly positive. Had a personal conversation with Dr R Wash and all these guys seem to believe that mostly everybody gets better.
Brussels, TF...etc.
So when I said what I said I didn't mean it as in -- why is my lot so much more awful and terrible than everybody else in the whole world?
I meant - given all this evidence and all this positivity and encouragement and so on, why do I sweat and convulse every afternoon, why can I not sit up talk at the same time for longer than ten minutes, why do I have ambulance migraine and if everything is going to be okay then howcome I haven't left my house but once in two months?
I mean I'm asking why; not complaining exactly. Why. I read a blogpost that says goodness it's amazing how great you can feel after a year of treatment! And I'm thinking why am I not able to say that? Why does this all seem to be in a dreadful holding pattern with inches of decline every couple of months?
That is what I meant. I did not mean that everybody else is not sick. I meant that the sum of literature points to eventual resolution *somehow* . And I did not mean this as a bid for sympathy. I am truly asking -- trying to understand - why.
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Keebler
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- Start with pubmed -- "patient recovered with no sequelae."
PubMed is absolutely, most certainly NOT the place to learn the realities about lyme. Nearly everything there is by the IDSA deniers. -
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Jordana
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Maybe but "patient recovered with no sequelae" did happen or they would not have written it down. I am not saying it always happens, but it apparently did happen.
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Keebler
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- " "patient recovered with no sequelae"
No, not really, one poor boy died after that had been reported. But they failed to admit it could have been lyme related and, oh, the steroids they gave him.
There are many false account of " "patient recovered with no sequelae" so very many. They don't follow them or if they come back with symptoms are told it's just the "aches and pains of daily living"
Yet, for some who do make speedy recovery and then don't relapse, look to Pamela Weintraub writing on this matter. She is the author to look to, really every word she has written for the best education. She speaks to the different strains and that matters so much.
"a blogpost that says goodness it's amazing how great you can feel after a year of treatment! And I'm thinking why am I not able to say that? "
"the sum of literature points to eventual resolution *somehow* " (end quote)
The literature you are reading is very selective. It's intended to help. There are other true experience accounts out there, too.
But, it's natural for a blogger or book author to want to be uplifting and a "winner" over a terrible illness but their journeys should be viewed in perspective. They want to share, to help - which is great, yet each patient is different.
no one is going to write book when they can barely get to the bathroom on their own.
I know you are not eliciting sympathy and I know the obituaries are particularly hard to consider yet if one is really wanted a true overview, the blogs are most certainly not the place to see the overview of the thousands who are struggling.
Yet, the blogs can be a place to learn what helped one person. And, in turn, maybe more. It's just so very complex - and complicated. -
[ 10-07-2016, 03:49 PM: Message edited by: Keebler ]
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Jordana
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Okay we're now having a conversation I did not intend to have when I wrote this post.
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Keebler
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- This is what you posed: "Why am I sicker than everybody else? . . . don't understand why, after nearly a year of treatment, the hits just keep on coming. . . ."
The conversation is looking at that to - objectively - take a look at the full scope.
And, yet, of course, there are ways to help improve chances of comfort now [many have offered suggestions] and it's still okay to know it's a real mess now yet also possible to still have success down the road. -
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Jordana
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OK...you seem to be saying that recovery from this illness is rarely possible and that I am laboring under an illusion.
It's fine to say this, but if its true then I'm not sure why there is a Lymenet. We could simply follow along then with modern medicine, take the steroids and the gapapentin. and wait for our Lupus, ALS and MS diagnoses. There's lots of "comfort" on offer in allopathic medicine.
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Keebler
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- Not at all my words. Not in this thread; not in any thread where I've ever posted.
"Objectivity" is the key term to consider. -
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Jordana
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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.
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Keebler
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- Again, not my words at all. Nor those of anyone here.
LL Author, Pamela Weintraub
Films: Under our Skin; Emergence
all give good objectivity - that includes the reality with hope and suggestions for management & success. -
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Jordana
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No, they're not your words but you can't have it both ways. You yourself refuse to give up and neither do the "sickest" of the people here.
Why *are* they sicker than everyone else, why do some people not get better?
This is what we're trying to solve here, right? For our own selves and the rest of the world. We want to get everybody to the bathroom on their own, it seems to me.
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Keebler
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- "not giving up" does not mean one does not yield to certain realities, though, or constraints.
Realities, objectivity & perspective are the key terms here.
LL Author, Pamela Weintraub
Films: Under our Skin; Emergence
all give good objectivity & perspective - that includes the reality with hope and examples / suggestions for management & success.
Many of the LLMD / LL ND authors, too, include the reality with how to get past it.
Objectivity & perspective
includes room for understanding the process, the realities . . . and also affords great latitude for the architecture of plans to shield one from harsh elements . . . & ways to navigate both the rough and the stagnant waters, etc. -
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Keebler
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- You ask "Why *are* they sicker than everyone else, why do some people not get better? " (end quote)
- Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease -
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Jordana
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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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posted
How's the rifampin going blue?
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Phoiph
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posted
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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posted
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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posted
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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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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