Some people here REALLY have lyme disease, and to those, I am truly sorry I ever dumped myself into the same category as you. You guys suffer ...a lot.
For those that have tried treatment for 8 months (or up to 3, 4, 5 years) with NO improvement , I would highly suggest reconsidering things.
I did this and recently had a epiphany in my life. I was only able to do this because I finally focus clearly and realistically about my problems. Thought about my deepest, darkest fears and addressed them. I immediately wrote down thoughts that came pouring into my tired brain. This is what I wrote:
"I've been scared to truly love (people, myself, LIFE) because of the fears of failure and/or loss that I will face ...The question of "when one of those two things defeat me, what do I do next?" has become the meaning of my existence.
The reason for this problem stems from many things. Observing (and being influenced by) my fathers behavior for 26 straight years has taken its toll on me. His relentless negativity (whether intentional or not) buried my self worth and love deep into my gut, joints, brain and heart. To be fair to my father, many other stressors acquired through my 'functional' life have contributed to my overall health, but none nearly as potent as the wrath of my fathers verbal weapons. My toxic relationship with my ex-girlfriend also encouraged me to bury my hate and allow myself to sink deeper into oblivion. I believe the sickness I have been dealing with for the past 5-6 years has been a direct result of those things.
Healing will now come from a healthy lifestyle consisting of a nutritionally balanced diet as well as access to creative and social outlets. Telling people this recent epiphany will be most therapeutic."
Figure out your problems. Address them. Be realistic with yourself. Don't be afraid to admit you were wrong. I am recovering from the extremely detrimental effects of the 10 months of antibiotics I went on, as well as my emotional and physical scarring. My life is AMAZING now and only getting better--I have so much clarity and creative motivation it's almost out of control.
Take care. Do your best.
Scott
[ 12-18-2009, 10:14 AM: Message edited by: knobs ]
Posted by SoSublyme (Member # 15185) on :
Scott,
It sounds like you have done an enormous amount of soul-searching. It's great that you are feeling so much better...it seems that emotional stress was playing a huge part in your physical health, as it does for so many.
I can't take antibiotics right now due to gut issues, but in my case I think I will probably need a lot more to get to the point where I can be at least partially functional. I often wonder at what point I will "just say no" to more antibiotics...I think I will have just have to see how it goes.
I hope that you really don't have lyme disease, but unfortunately, most of the people here do and we have to stick with treatment as long as it takes (or until we decide enough is enough.) We all seem to react differently to this disease and to treatment. But absolutely, our emotional health is an integral part of the healing process.
[ 12-16-2009, 11:48 PM: Message edited by: SoSublyme ]
Posted by knobs (Member # 21928) on :
^^ I agree with you--I won't tell you what to do. I should add to my post: for those who have NOT had improvement and have ONLY a clinical diagnosis ...which was the case with me.
Posted by springshowers (Member # 19863) on :
I am so glad you have found answers for yourself.
We are all so different.
For me.. i was hitting my head up against the wall for over 5 years on Abx... but I did have to try one more thing IV version of Abx before I put it to rest.
Luckily, for me, that was the key.
Each us is so different and if the IV did not work.. I think i would have been doing more of what your talking about. I was so frustrated and giving up.
Its so great to hear.. when someone finds something that works for them..
If I had to give advice now I would have to say that there may be a huge differance in oral vs IV treatment for some people. as it was for me...
And that it would be worth trying before hanging up the hat on abx all together..
Posted by LizaLu (Member # 21483) on :
I'm soo new into treatment that hanging up my hat won't do. I agree that one whom is distraught physically and mentally will never truly get better. The 1st step to treatment is getting the infection into remission, and while that's going on, figure out how to accept your life, your circumstances, and the lingering symptoms.
Find goals and stick to them. Easier said then done.
But if one is to be a survivor and not a victim, one must heal emotionally.
Glad that you got to the end of the road and see the light through the trees! Or hell, you maybe already be in the trees!
Posted by Hoosiers51 (Member # 15759) on :
I think for some people it's just a matter of finding the antibiotics that work for you (if you do have Lyme...it is hard to know who does and who doesn't if you don't have the CDC positive in my opinion).
I treated for a year and a half with a lower-tier "LLMD," (tested positive on the questionable Bowen labs test, never ran an Igenex) then gave up and stopped for about a year, deciding I never had had Lyme...was still very sick, so I did alternative detox and stuff, felt a little better off the drugs but realized I was still sick after the alternative stuff.
Then one day I had this epiphany that I did have Lyme. My knees were hurting, and I just realized, "this isn't normal, I was healthy before this all went down (my sudden onset illness)." This was a year after giving up on the first LLMD, and deciding I didn't have Lyme.
So I found a new, better LLMD. I tested CDC positive for Lyme on Igenex. Also tested positive for babesia, which I had tested negative for before. I did treatment, and started showing some improvement. Then I tested overwhelmingly CDC positive through Stony Brook (all 3 required bands, with 2 other bands).
I got the sense I had gotten as far as I could go with that LLMD, so I switched again, to another good one, for a new perspective. I am now making even MORE improvement.
My point is this....the break can't hurt. I've been there. I've quit. I've decided "I never had Lyme, that doctor was wrong."
Later in your life, the truth will make itself apparent. Either you'll figure out what's really wrong with you, or something will lead you back to Lyme.
I think some people here probably don't have Lyme. But I am not judging anyone, because it is just too hard to know with false negatives, etc. Sometimes it doesn't show up in testing. But we need to accept and be open to the fact that it might not be Lyme.
But sometimes it really is. Sometimes it really isn't. There is really no way of knowing which one you are. That's why time off can be a good thing, to put things in perspective.
Posted by 22dreams (Member # 17846) on :
I'm glad you are doing better, knobs. and I hope you continue on this route.
The problem for me is, lyme has adversely affected my thyroid, adrenals, neurology, and what is obvious chemical imbalance (not being depressed from being chronically-ill), etc. Which I never had before.
Chronic illness does cause one to take stock. and in my case, I got rid of people in my life who were any sort of drain/un-supportive. Which was the healthful thing to do for me.
My lifestyle was comparatively ideal health-wise before and during all this. I came from an eastern bent to health--"mind-body"--which I do believe plays a role in everyone's health.
However, infectious disease is very real, and when it enters various systems in the body, no amount of mind-body work is going to cure it although it can help us individually.
The disease itself needs to be addressed. I equivocate Lyme with what HIV patients have gone through in a lot of ways.
I just want to point out, that in past generations, people endured the same personal trial and tribulations that we do now (emotionally, mentally), even moreso with enduring the Great Depression, DustBowl, the Holocaust---
Yet oddly we did not hear about or meet people with these chronic illnesses as much at all. The (change in) environmental factor(s) plays a role in our health more than we know, I'm sure.
Access to alternative treatments to support our immune functioning is an obstacle for some of us ($$). Ideally, we should do everything we can to heal ourselves on every level, including emotionally. But money is an obstacle for too many especially with the ability to affording OOP treatment (alternative therapies et al).
Emotional stress does play a role, however, having this disease, esp. in it's neurological manifestations IMHO, makes us much more susceptible to succumbing to environmental stressors in ways we never did before. Would never have dreamt of.
BTW: remission is not uncommon with lyme disease.
Posted by djf2005 (Member # 11449) on :
I am unsure of how to address what you said.
A few things:
First, telling people on LN who are thinking of giving up to DO IT is irresponsible. I don't care your rationale, it's not fair to those who are holding on to the very last bit of hope they can.
You have been on abx for 10 months, had an epiphany, and are now better? Good.
You started to think clearer and feel better off abx. Either you had massive candida issues which were being made worse from abx usage or you had massive neuro-toxin circulation from improper detox. Either way, no one magically feels better OFF abx unless there is a reason to feel worse ON abx. Abx themselves are not "good" for someone in general but there is definitley something else going on here.
Now don't get me wrong, we are all glad you are feeling better, no matter the path, but I doubt very much you have a firm grasp on what this and most chronic illnesses fully encompass.
You seem to have dealt with your emotional trauma, and are feeling much better because of it and because you are off abx. This is good, but does not mean that those who have been on abx for 10+ months and are non-responsive should just give up!
IF someone HAS lyme or any chronic illness, it takes a lot more than popping a few pills (such as abx, etc) to actually re-build your body.
You may have felt worse or "not" better on abx because of heavy candida issues, toxins, metals, blocked detox pathways, emotional blockages, or a slew of other things.
There is a real possibility you don't have lyme, and for your sake, I hope you don't.
For my sake, and the sake of others here, please consider what you say before you say it.
I am not even on abx at the moment and I find this thread negative, discouraging, and offensive for those people I personally know battling for their lives, whether they are using abx as a part of their protocol or not.
There is much more to Lyme than abx, and much more one should consider before thinking about giving up.
So those of you that clicked on this, and are feeling discouraged, please don't be, and hang in there.
Best
Derek
Posted by feelfit (Member # 12770) on :
thank you derek.....though I don't feel that the poster had any malicious intent.....i must say that i felt a little discouraged in reading this.
feelfit
Posted by Lymetoo (Member # 743) on :
Thanks for saying so eloquently what I was thinking, derek.
I'm glad you are doing well, Scott and have been able to address your emotional issues. That is important to recovery.
Sometimes people don't respond to meds as they have not been treated for coinfections. I hope you didn't have any!
Posted by Lymeorsomething (Member # 16359) on :
Djf is right. These problems should never be oversimplified. Many people here have already heard the "it's all in your head" thing and knew it to be preposterous.
You don't get floaters or complex endocrine disruption because of a deficiency in soul searching...one could go on and on...
Don't profess to have had an epiphany and then come on here and stigmatize an already stigmatized disease further.
Posted by sutherngrl (Member # 16270) on :
Wouldn't it be great if having an epiphany could cure Lyme Disease. I would have been well a long time ago.
This is just so silly. There are hardly any words for a decent reply to this post.
Posted by Gahagan (Member # 21194) on :
Hmmmm. Let me get this straight. You were sick. Took antibiotics for 10 months. Stopped. Became clear-headed and emotionally stable. Yet believe the abx did not play a part in your recovery.
Could it be you feel better now BECAUSE of the 10 months of abx? Think about it.
Posted by KimDC (Member # 20699) on :
Scott - I think the title of your post is misleading. For those of us who want to give up, we shouldn't be told to just "DO IT". We need words of encouragement to keep fighting this unrelenting disease.
I agree that emotional clarity and healing is essential to recovery, but it will not LEAD to recovery. I have a Master's in Psychology and have received 2 years of counseling to deal with the emotional havoc caused by Lyme. I know for a fact that becoming emotionally healthy will not cure Lyme Disease.
Posted by TerryK (Member # 8552) on :
So glad you are feeling better but I agree with Derek's many good points. I myself felt worse the first year of treatment but I eventually did get some very good improvements and now 3+ years into treatment I am so very glad I stuck it out.
Hoosiers - I just want to mention that a CDC postive is not a good measure because you can get a CDC positive result even though you have NO borrelia specific bands. The criteria that IgeneX uses makes a lot more sense.
Terry
Posted by gwb (Member # 7273) on :
I'm very happy for you Scott but I think this can be a bit misleading for many people here who are seriously suffering with this disease.
I'm extremely glad that you've worked out your emotional issues of the past, but I don't think it's all that simple for everyone here on this forum.
Suggesting that people stop taking antibiotics is bad advice and best left to the person's LLMD or whomever is treating them. I know you mean well and that you are excited about what's happening with your health and emotions.
It's great to have an "epiphany" but this is something that is personal that happened to you and not something that you should be advising everyone else to do simply because of your own personal experience.
I wish you the very best and hope and pray that you remain well.
By the way, perhaps this thread would be better served in General Support. Just my opinion.
Gary
Posted by Hoosiers51 (Member # 15759) on :
While it's wrong to tell someone over the internet to quit, you could use that same logic to say that it's wrong to tell people to keep going.
I think it's more important that people realize it's not one-size-fits-all.
Knobs's approach will be wrong for some people (the ones who have active infection), but the approach of "keep seeing your LLMD until you're better" is wrong for those here that were persuaded they have Lyme, that really don't.
I think treating is always worth a shot, but at some point, we need to realize that we are only qualified to make decisions for ourselves.
So I guess I'm saying that on both sides of the debate, you should not listen to someone else unequivocally (without doubt).
Like I said in my post above, I stopped and took a break, and I am glad I did, because it gave me a lot of perspective.
Posted by seekhelp (Member # 15067) on :
I don't know a proper reply either, but I'm happy you're feeling better. I don't know what you dealt with before treatment and severity of symptoms.
I've always had absolutely little doubt many here who believe Lyme is their issue may not actually have it or it may not be their true health problem. Does this mean we're not sick? NO WAY.
I do feel many LLMDs string some patients too long who show no improvement. It may be good intentioned in that it's hard to tell the person you can't get them better. In other cases, it may just be a way to retain revenue from a patient long-term. That cut-off line is so hard to determine.
I have reviewed my giant medical record stack over and over and over trying to piece together a nice puzzle. I know everything like the back of my hand. I could tell you any abnormal result, test done, etc. easily. I still don't see the patterns I want to that definitely show Lyme/TBIs.
What does this mean? How do you have a terribly debilitating disease with no impact on labs or diagnostic tests? Yet you still can't function in society. It's insane and a situation many here are in.
I always ask myself if Igenex didn't exist, would we all be on a CFS forum? I'm in shock how much impact this tiny lab in CA has. You have no idea how much I wish I was a brilliant scientist/lab person who could scrutize every aspect of the lab operations to feel 100% confident about it. To me, it's the core of the whole Lyme community.
But going back to what you said Knobs, I'm not sure telling everyone to quit treatment is the right thing.
Posted by JOLA (Member # 23498) on :
I'll give you this-yes emotional stresses affect us all. Don't know anyone who hasn't had or is having to deal w/something.That being said I've lost a brother to Cystic Fibrosis, have a sister close to death with Primary Progressive M.S.
I also have several close friends dealing w/breast cancer as we speak. Perhaps an epiphany would heal them-I think not. I'm glad you're feeling better and I sincerely wish you continued good health.
Please know that we will still be here in the future for you.
Posted by seekhelp (Member # 15067) on :
It's not different btmb03. I admit my illness has caused tremendous stress on me. I'm sure it'll take years off my life. Posted by gwb (Member # 7273) on :
quote:Originally posted by btmb03: Wow - what a difficult post to answer. We do know that that long-standing stress supresses the immune system..??
But my point is: instead of an 'emotional epiphany' what if knobs had posted about a 'religious epiphany'..would that have been different?
We've had several posts on LN saying "Jesus healed me" (substitute Jesus for any other 'being' mortal or immortal) - yet those threads have all yay-sayers and not a single person ever disputed it?
How is this different? Just wondering, personally I don't think *any* amount of emotional/spiritual/religious healing could send one into 'remission'. Just my opinion.
Saying that you got healed is one thing (regardless of the source), but telling everyone to stop taking abx based on one's personal experience is not sound advice in my opinion.
If I said (hypothetically speaking) "Jesus healed me of Lyme", that's fine, but I think it would be wrong for me to tell everyone to stop their treatment and expect to get healed just because that's what happened to me. That's the real issue as I see it.
Gary
Posted by Hoosiers51 (Member # 15759) on :
I think the problem is that a lot of times people give others advice based on what helped them, and that is not always the right approach.
Posted by btmb03 (Member # 18394) on :
Oh I see - good point Gary! Makes sense.
Posted by knobs (Member # 21928) on :
First off I didn't read all posts yet. I am sorry about some choice words, I have edited the post to not take sides, I AM REALLY SORRY FOR THAT.
Secondly,
I'm not 100% yet at all. I have been detoxing heavily!!!! Grapefruit, juices, hiiiigh fibre, high magnesium, high fish oil, high vitamin C.
To be brutally honest, I am pooping out BLACK SLUDGE that wreaks to high heaven.
I have an awful gut from those antibiotics as well the emotional scarring from my past.
I am feeling better every minute. I recently moved to a new city with my girlfriend and I have been meeting new people. I am so excited about the opportunities here. I share my story with almost every new person I meet. I'm so liberated, so free, so accepting of the fact that I made a mistake in my self-diagnosis.
I never lad Lyme. I had a huge ball of stress, depression, and scarring that eventually reared its ugly head through my body and havoc ensued.
Posted by djf2005 (Member # 11449) on :
You are just one big ball of mixed up emotion aren't you? lol
I suspect those 10 months of abx did something if you had lyme, and even though you are feeling great now, you won't be at some point down the road if you do have lyme.
I hope this is not the case.
Sounds like you are on the upswing of things and don't want to even think about what you have been through or allowed yourself to "believe".
If I know one thing, it's you can't deny having lyme if in fact you have it. It is debilitating in many cases, and no amount of black poo or emotional healing is going to take it away.
Lyme often rears it's head under times of stress, this is a commonly accepted fact, so it may or may not be coincidence that during a stressful time in your life you began to have symptoms.
So in short, you do or dont have it, and that's not up to you unfortunately.
On another note, none of the things you list there really don't justify having black poo, so you might want to get that checked out.
If you need to take abx again at some point, there are measures you can take such as high quality probiotics (vsl#3) that will ensure your gut is not "destroyed"
Best of luck to you and your black poo.
LOL
Derek
Posted by knobs (Member # 21928) on :
AGAIN, I am very sorry to offend you. I feel it's my responsibility to tell my story--it is my new therapy.
You can search for my name and see the history of my posts about tests and meds I tried (treated bart, babs and lyme).
I am loving the feedback and not because I wanted to discourage people--I never intended to do that but realize I did it. Sorry.
I just wanted to get the wheels turning of people who have been in a stale mate with no proof of any illness.
I myself had REAL symptoms as well--vertigo, derealization, heavy depression and anxiety, agonizing joint pain.
I grew up with my mother, two brothers and my diagnosed Bi-Polar father. my BIGGEST fear in life has always been the fear that I would end up like my dad ...give up on life at 30 and take 10+ psych meds a day. The meds never and still don't help my dad. He has the same crazy mood swings, depression and verbally abusive vernacular.
He gave up on life because he was scared of failing. He was a jazz drummer in his early 20's--talented and motivated. I'm realizing now that he got depressed around the same age I starting getting bad joint pain. I didn't know at the time that my pain was caused by my WEAK stomach that was caused by my BOTTLED STRESS AND DEPRESSION. I hated my father for being what I thought was 'crazy' --I thought, "it's not fair my dad is crazy, maybe I'll be crazy like that one day!"
I thought I figured out family's problems. I have lyme because my father probably had it! He wasn't crazy, he had/has bartonella and/or lyme! And that's what I have! I figured out my life!!!
WRONG WRONG WRONG.
I truly believe my dad got scared about the cold, harsh and unfair world out there and was scared to face his problems.
HIS dad had developed alzheimers right after retirement. Why? Because he was probably depressed. My father always told me that his dad was a "miserable old *******" and he was probably right.
My dad turned into his dad and I am BREAKING THE CYCLE.
That's my story. I love all of you and wish you all the best.
Posted by knobs (Member # 21928) on :
DJF--I took HIGH QUALITY PROBIOTICS (the entire treatment, and continue to take it) AND NYSTATIN for 9 out of the 10 months ...At one point in July she told me to back off for a while.
Posted by knobs (Member # 21928) on :
BTW. I was pretty regular throughout my whole treatment. Never any constipation and in fact diarrhea was a huge problem for me for a long time. Why was that? Because I had the black sludge sitting in my gut taking up space. Black, depressed, stressed out sludge.
Posted by SoSublyme (Member # 15185) on :
Hi knobs,
Black stools are usually a sign of bleeding in the GI tract, so please have that checked out right away.
Posted by knobs (Member # 21928) on :
Hoosiers-I like what you said here:
"While it's wrong to tell someone over the internet to quit, you could use that same logic to say that it's wrong to tell people to keep going."
I couldn't agree more. Looking at some of the "encouraging" posts on this board now actually make me quite ill when I read them, whereas before, they gave me a false sense of comfort.
Posted by Brussels (Member # 13480) on :
Knobs, go on your healing journey!
What we suffer is real, but the real cause CAN be in our heads, sometime buried deep inside.
dr. K. also thinks that ALL chronic sufferers have mental and psychological issues buried deep in them and that not addressing these problems will make you fall sick again, sooner or later.
How many people inside them want to be still sick, deep inside?
My mind said, 'I want to be healthy'. When I tested myself energetically, my body told me 'I want to be sick'. It looked unbelievable because I thought I wanted so hard to be well again. Deep inside myself, I wanted to remain sick for some reason. I also treated the problem then.
One though needs to treat a bit of everything simultaneously, in order to recover faster. Some killing here, some acupuncture there, some psychological treatment there. Many people here are so sick and brain fogged, they have no clarity in their minds to solve anything like you did.
Congrats and good luck in your healing journey!!
Posted by METALLlC BLUE (Member # 6628) on :
Derek pretty much said what I would have said. I hope Lyme never plays any part in your life again (if you had been/are infected still), but I wouldn't be surprised if it does.
A lot of people feel better immediately after stopping antibiotics. No one here has said that yet in this thread, so let me be the first. However, it only lasts anywhere from a week to a few months (unless the person entered into a long term remission). We're talking strictly Lyme, not co-infections, and not other known complications of Lyme (detox, hormones, adrenals and other glands, etc). Then you also have those who cured it, and thus never become sick again -- at least as far as we know. There is no way presently (that I'm aware of) to know when a cure has taken place. Most people recognize cure as never experiencing symptoms again until the day they die. That isn't a cure when it comes to Lyme. If the infection is still present, they're still infected.
As far as Igenex goes. I've done my research on them. They are credible to the core. They've passed certification and had a variety of blind independent laboratory analysis done and consistently qualified for official CLIA status. They are officially approved by 8-10 states at present and have state health department approval as such.
If you have any doubts about Igenex credibility, it's because physicians who haven't read the facts proclaim the lab "isn't credible" -- which is simply....false.
I've been hearing a lot lately about how the "Mind can heal all of us who are sick," Let me tell you what I think. It's hippy horse****. New age hocky pocky mumble jumbo -- that's my opinion.
There is however one truth. The mind can control innate function of immunity and thus "some" forms of illness can be resolved. An active, pathogenic, toxic, inflammatory inducing condition that leads to nerve damage and brain damage is not one of those "resolvable" illnesses without actually killing the infection. How you kill the infection is up to you -- antibiotics are one method that have a great deal of research, but they aren't the only way apparently -- based on what the Lyme community has been doing. We know for a fact that a healthy immune system can't cure Lyme. Lyme is abundantly capable at defeating just about any human immune system.
There is a solution, but to understand which solution requires each patient to understand which specific strain and pathogen is causing the underlying metabolic, immune dysregulation, and other abnormal chemical alterations the infection causes.
Chronic Lyme and associated infections (and factors) is a complex array of events and conditions which can't be resolved without "reductionism" as well as "holism" -- you must combine the best reason and psychological/spiritual factors have in resisting the illnesses inclination towards killing the host or entirely debilitating it.
A patient with Lyme and five co-infections may not even be coherent enough to sit in counseling or meditate, thus treating the underlying infections enough for them to get to that place is essential, and once there they must continue to fight for a "balance" which is tedious and fragile unless intervention with actual tangible germ killing action is employed.
A patient with Lyme, cancer, and other illness perpetuated by the underlying Lyme (the infection lead to the cancer and other illness) will require treatments for the underlying infection but also potentially for the cancer. If this person can repair their immunity, their mental health, and all other aspects of the body, it's possible the cancer may resolve without intervention on the cancer directly alone. Does it mean they shouldn't intervene? Well, cancer is complex too, so definitely! They should intervene and find out what their best options are for their specific situation.
To figure out the options requires a lot of trial and error for a lot of people. The reason is simple, -- we're not just dealing with borrelia burgdorferi. We're dealing with a world that is toxic, lives that are sometimes toxic, genetics that predispose us, negative attitudes, multiple opportunistic infection that take advantage of Lyme's ability to lower the human immune system, and then of course access to treatment -- which can be financially restrictive, or not even available depending where someone is located.
So, that's the reality. Pray and beg all you like. But don't be surprised if God never comes. I'm not saying Jesus was wrong, or that counseling or "believing" your healed are bad things to "try" -- just don't be shocked if in-fact you do have Lyme and stay ill.
I hear God helps those who help themselves. A little illogical from my personal perspective, because it seems everything we humans do to help ourselves has been done so via our own human perception, observation and ability to self reflect through our evolved cognitive status. Seems mankind has a propensity for finding answers when he makes an attempt. Miracles -- or unexplainable healing do take place, but it doesn't mean there wasn't an answer available that can be rationally understood at some point.
We live in a universe that is chaotic, not random, but yet -- is tangible and yet not. Quantum fundamentally, and yet seemingly mechanical on the surface. Therefore finding answers to illness will be amazingly complex and require human understanding to solve the "majority" of problems -- how we harness those answers is a whole other discussion, but prayer, meditation, and "positive" thinking alone, is not ever ever ever going to solve every person's ill health.
In the end though, it "might" heal some of you -- but... for those who weren't healed, don't be discouraged when people say "Well maybe you weren't praying hard enough." I mean seriously.....come on now, ....
Posted by sapphire101 (Member # 6638) on :
I'm glad you are feeling better.
Honestly, 8 months of abx won't even make a dent in someone that has been ill for many years like a lot of us have here.
I have been on abx for 5 years and I've seen great improvement but far from well. I am looking into other treatment.
So I guess I don't have lyme since I'm not well after 5 years? Don't I wish. It would be irresponsible for me to tell others to ditch their abx just because I have.
I think this post might have gone over better on the "epiphany" board.
Sorry I don't mean to offend as I know you had the best of intentions. Guess I got up on the wrong side of the bed this morning.
I sincerely hope you continue to improve.
Sapphire
[ 12-17-2009, 10:06 AM: Message edited by: sapphire101 ]
Posted by sixgoofykids (Member # 11141) on :
I agree with SoSublyme, please get the black stools checked out just to be sure.
As long as you're detoxing that way, you might like the Dr. Natura cleanse. I really found it got out a lot of old stuff and I felt better after it. My non-Lymie husband loved it, too.
Good luck on your continued journey. Most of us who have gotten well have worked through an emotional component of the disease.
Posted by abigail (Member # 14936) on :
I'm with sutherngrl.
Posted by coltman (Member # 21272) on :
Knobs did you have any labs done? like igenex wb, cd57, VEGF? c3a/c4a? If so what were the results?
Posted by nefferdun (Member # 20157) on :
I don't know why anyone is upset with you. There are many forms of treatment that work for people. I don't believe in all of them but I don't attack people that use them. Purging yourself of negative emotion and having an attitude of gratitude can be extremely healing. There are homeopathic LLMDs that put this on the top of their list for healing. When you can see what suffering does FOR you rather than just feeling a victim of it, then you have more courage to face it. Perhaps when I completely let go of wrongs done to me, including the tick bite, I will feel released from much of the suffering that I have made the decision to continue to embrace. That does not mean that I am well but at least I will not be buried in misery focusing every moment on what is wrong rather than what is right. If you do not find wellness. If you slip back into sickness, at lease you had a time to feel whole and completely at peace with yourself and life. You can start another treatment without the feeling of failure knowing that it will not consume you.
Posted by knobs (Member # 21928) on :
LISTEN.
I checked myself into a MENTAL HOSPITAL before starting lyme treatment! I was so SICK and DEPRESSED and SCARED out of my mind about the symptoms I was facing. After 7 months I listened to doctors and CHECKED MYSELF INTO THE BIGGEST MENTAL HOSPITAL IN TORONTO.
What happened to me after 2 weeks of anti-depressants (which I still take but will DEFINITELY be getting rid of safely soon)??? I felt a lot better. I slowly started getting confidence back in my life and began to live it again.
THEN, the pain came back! The brutal back and joint pain, then stomach issues, then bad depression again ....I thought I might be bipolar at this point but no, I had my answer and it was LYME! .......Or was it???? Noooooooooooooo
I did my 10 months of pure bloody misery on ABX. If you stopped ABX you WON'T be cured. You need to detox hardcore.
Posted by knobs (Member # 21928) on :
OK-NOW, a lot of you are going to be very skeptical about what I am going to tell you but here goes.
When I had this 'epiphany' I was high off some very good medicinal MARIJUANA. That's right--weed. THE ABSOLUTE BEST MEDICATION I'VE ENCOUNTERED THROUGHOUT MY BOUT WITH CHRONIC ILLNESS.
MARIJUANA.
THIS DRUG ACTED LIKE AN ANTIDEPRESSANT FOR ME. For some reason, getting high that night allowed my mind to be fully clear--I almost really didn't feel high but felt "normal" for the first time in a very long time.
I am NOT telling people to rush out and smoke marijuana. For some, psych meds work. For others, detoxes and cleanses work.
Please people, I am so embarrassed of the paranoid, hypochondriac former self-if you want to see what THAT person was like, search for "KNOBS" in the search option. I'm here to help people.
The only reason I came back on here is because I promised people I would keep them updated when ditching the ABX.
Posted by djf2005 (Member # 11449) on :
I think I am going to say a few more things and then exit this thread stage left...
First, if your grandpa or family had alzheimers, and you are blaming that on "depression", than that I believe is a mistake.
If you are at all familiar with the work of Alan Mcdonald he was able to find Bb in the brains in 7 out of 10 randomly selected alzheimer samples.
Coincidence? I think not.
Lyme, Autism, Alzheimers, MS, ALS, a lot of these conditions often go hand in hand with what you "don't have".
It doesn't seem like you have even seen the tip of the iceburg as to the info out there that can correlate this.
I am sorry for your suffering, I truly am.
You seemed to have suffered emotionally a great deal which can contribute to any illness, whether tangible or not.
Your father's actions and thought processes down to his very TV choices all could have been influcened by the infection you "dont" have. Just some food for thought.
Lastly, I now see you say if someone stops abx, they "wont" be cured now but they may be if they detox when they stop. What if someone does heavy detox while ON microbial treatment? Seems more logical to me.
I am not here to convince you have Lyme, because if you do, you won't need convincing with enough time. For the sake of everyone, I hope that is not the case.
Best
Derek
Posted by knobs (Member # 21928) on :
You know, Derek, you always write that you "sure hope I don't have lyme" but I think you're bullsh***ing me. You hope I do have Lyme so I'm in the same boat as you-you don't want to be alone. All you do is focus on something negative about my posts.
I will leave you all with this quote:
"Believe nothing. No matter where you read it or who has said it, not even if I have said it, unless it agrees with your own reason and your own common sense." - Buddha
Bless you all. I love everyone.
Posted by METALLlC BLUE (Member # 6628) on :
Hey Knobs, I applaud you for at least being candid in the methods you used.
quote: There are many forms of treatment that work for people. I don't believe in all of them but I don't attack people that use them. Purging yourself of negative emotion and having an attitude of gratitude can be extremely healing. There are homeopathic LLMDs that put this on the top of their list for healing. When you can see what suffering does FOR you rather than just feeling a victim of it, then you have more courage to face it. Perhaps when I completely let go of wrongs done to me, including the tick bite, I will feel released from much of the suffering that I have made the decision to continue to embrace. That does not mean that I am well but at least I will not be buried in misery focusing every moment on what is wrong rather than what is right. If you do not find wellness. If you slip back into sickness, at lease you had a time to feel whole and completely at peace with yourself and life. You can start another treatment without the feeling of failure knowing that it will not consume you.
I think this is very useful -- for those who are cognitive and emotionally capable. Sadly many are neurologically ill as a direct result of the infection causing encephalopathy and other central nervous system degeneration that they're not capable. For those who are -- by all means, go out there and do your best to reconcile with reality, your personal responsibility, and forgiving where forgiveness is needed.
People don't come to Lyme Disease (Or any chronic debilitating infectious) disease as clean slates, except new-born children. Some come from abusive families, some came from loving families. Some were healthy sound athletic and happy individuals, and some were unstable with mental illness or other factors.
Does this mean these prior factors are responsible for keeping them sick when in-fact they are infected with a biological pathogenic infection? No way, they'd be sick either way. However, if it's possible to work thru issues that you came to the illness with -- please by all means, see a professional in whatever areas you need to recover "all" of your health. Treat your infection, treat your other conditions -- do whatever you're capable of doing.
Just remember, Lyme does not discriminate. It can break the strongest and healthiest people. Even iron can be bent and broken, so what of us fragile human beings within this skin we're living in?
I personally feel that all chronically ill individuals should be seeing a mental health professional who "supports" them as they move through their suffering. However I don't support mental health professionals who try to "fix" the mental health of someone whose mental health problems are caused as a direct result of the infection. The patient will just become frustrated and want to bash someones skull in. Most of us have experienced that, and that is why most of us have had abnormal Brain SPECT scans and MRI's. For those who haven't -- even many of them had cognitive problems and abnormal neurological function caused by biological infection.
It's all quite complicated. Today I'm having a better day. Much better than I've had in months. I just came off of one week or Rifampin and had the worst Herxheimer reaction ever. So what does that tell me? I've got an untreated infection that wasn't treated even though my Lyme Disease was. 8 years of antibiotic therapy and I'm only 35% functional. The antibiotics keep me stable at 35, but I couldn't get past it? Why?
I prayed, I meditated, I went to church, I read every self help book, I saw 150 doctors, I detoxed, I exercised, I read all the books and guidelines on Lyme, I spent thousands and thousands of dollars on supplements. I'm exceptionally positive and I have an iron cast will. I believe the impossible just takes a little longer. I believe every problem has an answer. I am self educated as I've been sick since I was a very young kid -- the LLMD thinks I was infected around 18 months old, but I didn't have "explosive" symptoms until age 9. I did have a lot of problems earlier but I dismissed them because of the family I came from. My parents were both alcoholics. I've been in counseling for 20 years, so I've moved far past that -- however because of the severe neurological impairment it took me 10 times longer than a person without this problem to reach the same destination.
Yet, here I am, 2009, and I'm 35%. Whose fault is that? It's sure not mine. I'm a beast. Before my body became entirely debilitated, I used to bodybuild and run 5 miles daily. I was sick as **** while doing it, but everyone told me nothing was wrong with me -- that I just needed to "get out and live and stop obsessing over how bad I felt." My tests were all normal (Until they finally ran the right tests). I live in Springfield Massachusetts. Why wasn't Lyme ever considered? Why didn't they (And why don't they today) take it seriously? Why did they overlook the babesia, the Bartonella, the Rocky Mountain Spotted Fever. I tested positive, yet -- they ran all the wrong tests. Why? Simple. They didn't know. It was purely ignorance and anyone with good intentions could have made the mistake.
I was angry at one point -- angry at everything. The world, my family, friends, doctors, the illness and I blamed them for their response to my circumstance. They abandoned me, they disbelieved me, they claimed I was faking -- yet? How could someone so strong willed, so intelligent, so fierce, compassionate, be humiliated, belittled and finally called a hypochondriac? I'm not angry at any of them now. They were mistaken, however sometimes you can't go back. Even mistakes can sometimes damage the bonds to severely to reconcile -- however, I was able to do so with my parents (Who have been happy and sober for 20 years now), and some of the doctors who I spoke with later. I told them "You were wrong in your diagnosis, and you made some poor decisions, however I know you wanted me to recover and that you just didn't know then what you now know. I'm sorry that it happened to me, and that I had to suffer as a result of this illness and as a result of your inability to treat it. You now hopefully have learned from me and can help others. We're all responsible for our mistakes -- and my mistake was blaming you and holding a resentment because you didn't know something. I forgive you, will you forgive me?"
Some did forgive, some didn't. Sometimes we have to forgive and apologize, even if we don't think we were wrong -- that's important too. Most of my friends who abandoned me are still no longer my friends. I forgave them, but now they're just distant acquaintances. Like a romance that came to an end, even if you remain fond of "some" of the past, sometimes it's best to just let them go.
People who are angry and resentful have very good reasons to be and it's apart of the grief of both illness as well as the indirect effects the illness has. Those people "did" cause suffering and pain to us, but we're responsible for how we respond to that suffering and pain. After our anger subsides, -- which can take years for many -- we're able to accept and forgive. Is they why they are still sick with Lyme? No way.
So my point:
Even the strongest lose with Lyme. If Jesus could lose, so could all of us. Hence the whole "Forgive them for they know not what they do."
If you're fortunate through both your internal skills, support system, modern medicine (as well as complementary, and ancient methods)then you have an enormous amount to be thankful for. The key to survival with Lyme is both individual, as well as collective. Without others, none of us could beat this. Even the lone researchers working in some basement has been apart of our recovery. We stand on the shoulder of giants who helped refine even the primitive treatment we have today, and eventually others after us will have an even better chance! It is our philosophy internally that we use to guide the purpose and meaning of our lives that allows us to survive the tangible fight.
Thanks for keeping us updated man.
Posted by djf2005 (Member # 11449) on :
You missed the point, again. You are paranoid and obviously very very scared about having a lyme dx, which considering what you've read here, is understandable.
I want you to have lyme so I am not alone? lol
Personally I am far from alone, and would never want anyone to have Lyme. That's not really a rational accusation/ and/or thought on your end.
I have a loving and caring family, a brother who calls me everyday, a wife that would lay down her life for me.
I am healing more everyday and will be well soon.
I am not trying to put you in the "Lyme boat".
I am trying the best way I know how to warn you of your family history, their behavioral patterns, your own, and the possible connection lyme has in it all.
You accuse me of focusing on negative things you post but that is not the case my friend.
If you re-read my last post I am trying to show you the correlation with Alzheimers, and many other neuro-degen illnesses like it that are closely connected to lyme. For your sake, not mine.
If I were you, instead of throwing back what someone says that you "dont" like because it forces you to examine your current set of circumstances closer, I'd maybe have a look.
My intent on LN has been and continues to be to learn and share what I have learned. This has been my aim albeit it wrong in its manner sometimes but you must understand my intent has been to help, not harm.
So no, I don't want or need you to have lyme, and yes, I firmly do want you to be well.
We have all seen enough suffering and if one on this board can be well than that's great!
Just keep in mind what I and others have said, and try not to think that what we/I say is coming from mixed motives.
I'd much rather be getting on with my day at this point in time but I am still sitting here, posting to you, because maybe it will be helpful.
It's not a quest to get more "lyme" members, it's a quest to help those of us out of this mess.
I am glad you seem to have found your way out, no matter the method.
Best
Derek
Posted by sutherngrl (Member # 16270) on :
So now we know that "Weed" was at the root of this epiphany!
You are probably right, you never had LD!
Good luck on your weed trip!
Posted by knobs (Member # 21928) on :
METALLIC: YOU WROTE:
"If you're fortunate through both your internal skills, support system, modern medicine (as well as complementary, and ancient methods)then you have an enormous amount to be thankful for. The key to survival with Lyme is both individual, as well as collective. Without others, none of us could beat this. Even the lone researchers working in some basement has been apart of our recovery. We stand on the shoulder of giants who helped refine even the primitive treatment we have today, and eventually others after us will have an even better chance! It is our philosophy internally that we use to guide the purpose and meaning of our lives that allows us to survive the tangible fight.
Thanks for keeping us updated man."
I really agree with this. People with chronic illness have REAL PHYSICAL PAIN. REAL lyme sufferers have REAL pain. I am extremely thankful for all researchers of chronic illness. I am TRULY THANKFUL TO ALL ON THIS BOARD THAT SUPPORTED ME AT SOME POINT. However, I know now that I was headed in the wrong direction.
For the undiagnosed chronic illness sufferer, you may want to CONSIDER getting off ABX-that's all I'm saying.
I can go on here ALL DAY about my new opinions about chronic illnes, herxing, candida, detox methods, etc. but I don't want to disturb any more people than I already have. Please PM me if you're debating stopping and I can ONLY give you MY story. I really believe it can help people that are lost.
TO DJF-I truly believe you are the lost one. Your posts come off very condescending when you say things like "my friend" -- we are not friends and you know that.
Posted by djf2005 (Member # 11449) on :
Honestly I refuse to invest anymore energy into this thread.
Wake & bake day?
The only person I can relate to the way you react to what people say and do would be my little brother's friend. He smokes weed about 3-4 times a day. He can be nice, mean, angry, explosive, and then sweet as pie all within 10 minutes.
Your responses continue to be accusatory, immature, and lack any response to what I am trying to say.
I am not the "lost one", although I am unsure what that even means. No one said you were lost, or implied it. If it makes you feel better thinking I am "lost", then by all means, do so.
You are extremely defensive, sensitive, and refuse to acknowledge the things I am saying that have relavence that could actually be helpful yet point out the fact that we "are not friends".
This has little to do w/ anything, and it was meant in a sincere way. It's a gesture of good will, but you take it to mean something else. Again, defensive, sensitive, throw it back in the face reaction. And you don't have lyme? If you don't have lyme, you've got some very real issues, that I do know.
I don't understand your responses, lack-thereof, and your overall attitude.
I tried to give you information that might be helpful to you and your situation. If for whatever reason they have not been, or perhaps you are not willing to listen, than it is what it is.
Derek
Posted by glm1111 (Member # 16556) on :
Knobs,
I am going to jump in here after reading your initial statement and the pursuant threads. My intuition told me initially that "this person sounds high" to me.
No judgement here because I have done my fair share of marijuana being from the 60's generation. (perhaps that's why I recognized it)I have had several "epiphanys" during my long battle to becoming well.
Interestingly enough there have been recent studies about the antibiotic, anti-inflammatory properties of marijuana. That info can be found by doing a search on here and also doing a google search.
This disease has taken me on a 25+ yr "spiritual - soul searching- Reiki - meditation - juicing - psychiatric meds - macrobiotic - heavy detoxing - antiobiotic -herb - salt/c etc journey. My point is I am still de-toxing.
Soooo---if the marijuana is helping to put the pain and sorrow that you have experienced away and possibly helping to calm down the infection that you thought you had, then that's great.
People on here are some of the strongest fighters I have ever seen and are doing the best they can fighting this horrific disease.
Everyone has to be allowed to go on their own journey whether you or I or anyone else thinks it is the right way or not.
MB and Dereck have given some profound insights. Maybe it's time for me to do some further research on medical marijuana!!!
Gael
Posted by JOLA (Member # 23498) on :
Dear Knobs I said it before and I'll say it again that I wish you continued recovery.
[ 12-17-2009, 01:16 PM: Message edited by: Anna Lee ]
Posted by knobs (Member # 21928) on :
^^ I never doubted the strength of any lymenet member. LIKE I SAID, people with CHRONIC ILLNESS SUFFER FROM REAL PAIN.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by seekhelp: I could tell you any abnormal result, test I always ask myself if Igenex didn't exist, would we all be on a CFS forumthing.
Yes, or a fibromyalgia forum. What good would that do us?
Posted by knobs (Member # 21928) on :
quote:Originally posted by Lymetoo:
quote:Originally posted by seekhelp: I could tell you any abnormal result, test I always ask myself if Igenex didn't exist, would we all be on a CFS forumthing.
Yes, or a fibromyalgia forum. What good would that do us?
EXACTLY--what good would that do you? Really ask yourself that question if you are highly in doubt that you have Lyme.
We are witnessing the peak of chronic illness. People are on the verge of realizing that SOME of these chronic illness' aren't that difficult to get rid of.
Stress, diet and detox are the 3 most important things in my opinion.
1. Find out what you are really scared about in life. You might be scared that you are going to suffer your whole life with a disease you're not sure you have (that's what I thought).
Figure out your insecurities and how they are holding you back in social environments; in life. Learn how to correct these issues so that you can be a calm, comfortable, confident beautiful human being.
For example: I was a very talented athlete and artist in my early 20's and over the last 5 years (when physical symptoms manifested) I somehow lost confidence in myself. I lost myself--TRULY. I got scared. I thought no matter what I did in life, I would end up miserable like my dad. THAT was my biggest fear.
My dad has been and still is on every psych med you can imagine. He was hospitalized and sent to the psych ward 5 times between the ages of 25 and 40. HE WAS AND STILL IS DEPRESSED!!!!!! He didn't know how to figure out his life and he got lost in the psych meds business!!!
I learned that I WILL NOT become my father. I AM TALENTED and im NOT SCARED TO SHOW IT! I'm not scared to EMBARRASS myself! Judge me all I want I am confident again!!!
2. Start eating very healthy (which i was perfect at while on antibiotics--not one grain of sugar the entire 10 months). Doesn't have to be perfect. But get a lot of leafy greens and probiotics. Encourage bowel movements and replenish the gut with acidophilus.
Address your STRESSORS! I have to talk to my mom and dad now so I can FREE MYSELF. I am ALREADY HEALING.
3. Fibre, prune juice, stool softeners, or laxatives if it's that bad!
That's what worked for me. Try it if you want. I'm not begging anyone or even encouraging anymore because I AM NOOO DOCTOR and I'm certainly not a salesman or a good storyteller.
I am just a REAL human being just like all of you. I was LOST, ALONE, DEPRESSED. LOOK AT MY OLD POSTS AND LISTEN TO WHO THAT PERSON WAS!!!
Why did you click on this thread if you WERE NOT CONSIDERING GIVING UP?? Just to encourage other people not to give up????? WHO IS WORSE???
Posted by btmb03 (Member # 18394) on :
The post above was edited- resulting in this response being edited.
[ 12-17-2009, 01:22 PM: Message edited by: Anna Lee ]
Posted by knobs (Member # 21928) on :
^^^ Thank you very much btmb03!!!!!!
Posted by btmb03 (Member # 18394) on :
knobs - you're welcome! wow you mods sure are quick! Posted by knobs (Member # 21928) on :
I'm not a mod!!! I've got 94 posts. I'm a regular guy! I look at your 1K+ posts and think you're a mod! I'm just on here trying to spread my story.
Posted by WildCondor (Member # 434) on :
Condor says...
Don't EVER GIVE UP!!!!!!!!!!!!!!!!!!!
Nothing is ever over until the moment you stop trying!
Don't QUIT...you don't want to be a quitter. The shame...it's worse than anything you have to live through.
Keep fighting! Just NEVER GIVE UP!
Posted by knobs (Member # 21928) on :
^^^ Are you saying that feeling worse on ABX and staying on them is better than giving up because you wont feel SHAME???
Quitting ABX is shameful??
Or just quitting in general is shameful?
You are confusing me.
Posted by WildCondor (Member # 434) on :
Quitting in general is shameful. Quitting antibiotics...that's par for the course and not what I mean to address here. I mean, everyone has a different situation, and is in a different mental and physical space...BUT...Quitting to fight for you life means you don't love yourself enough to LIVE!
So to that I say..keep fighting and don't give up! This is meant to be encouraging and positive amidst the doom and gloom!
You CAN get over Lyme and you can get your life back, you just have to be determined and fight for it and educate yourselves.
Knobs..it is extremely counter productive to come on to a public internet health forum that is meant for encouragement and support and do the exact opposite by telling people to give up. That is irresponsible...and insulting. Think about what you are doing before you encourage people to quit and fail. The original first line of your post said " FOR THOSE READY TO GIVE UP"...followed by "DO IT"
You should be ashamed of yourself for posting that.
Try being supportive and encouraging...you might be surprised how it makes you feel.
To many, many members this forum is their last hope, and it can mean life or death to them. To come and see this post....bad idea!
To everyone else...
DONT
GIVE
UP!!!!!!
Cheers!
Posted by kim812 (Member # 17644) on :
I guess you can count me in as a quitter..after 30 months, 19 different abx combos, IV two seperate times, IM and losing my gallbladder I QUIT ABX
I finally said enough to my very well known llmd who honestly had no idea what to do with me and said goodbye. I would have stuck it out had I even felt one ounce of relief. I had only 41 on my Igenex and that was it.
I never had any relief from my chronic fatigue and muscle twitching/stabbing or burning pain on anything I ever took.
I tried and did everything they asked me to take, do even though at times I was terrified. Especially doing the IM Bicillin but I did it all and I am no better no worse now than 3 years ago when I started all this.
I have not quit on trying to find the answers to my illness or even what happend to me 5 years ago. I will never quit but yes I have quit Abx because it ruined my teeth, my skin and now I have chronic yeast which I can't get rid of.
So yes I still come here to read on how others are doing and I am very interested in what people are doing for treatments and if they are getting well. I know Lyme is epidemic and thousands of people have it but I don't believe I was ever one of them.
I do go to the CFS boards because well that is what I suffer and I do mean suffer from-chronic fatigue which is also debilitating.
So no matter what we all are dealing with I don't believe in quitting in finding out why, what and how we can all improve our quality of life again.
I for one was a very healthy, active, happy person when I became ill. I had a great life going and I was struck down almost overnight.
We all have to decide for ourselves what path to continue on in order get well.
So yes I quit abx but have not quit this fight to become me again....
Posted by djf2005 (Member # 11449) on :
Thank you for speaking some sense Connor.
Agreed 100%.
Much appreciated.
Best
Derek
Posted by btmb03 (Member # 18394) on :
Hi knobs, I'm sorry I have difficulty reading some of the lengthier posts but wanted to find out a couple of quick things:
a) What prompted you to consider Lyme in the first place, ie: fevers, sudden onset, etc.
b) I assume you were under the care of an LLMD vs PCP so what were your results on Igenex?
I guess what I'm asking is.. why Lyme?? I completely understand if you're exhausted of answering questions, and I do agree with others that there are probably some on this board who don't have Lyme..but then medicine is hardly an exact science'. Thanks.
Posted by knobs (Member # 21928) on :
^^^ Here is a link to my VERY first post on lyment. That sould answer most of your questions.
Dizziness, sudden onset of all physical symptoms was my story. Igenex, travelled to United states too see an LLMD in NY State., the whole works.
Do a search for me, I have more posts--you'll be reading two totally different people--Then and now.
Posted by btmb03 (Member # 18394) on :
Thanks knobs, will definitely check them out as I am able. Much appreciated!
Posted by coltman (Member # 21272) on :
quote:Originally posted by knobs: Dizziness, sudden onset of all physical symptoms was my story. Igenex, travelled to United states too see an LLMD in NY State., the whole works.
Your case is interesting , from what I gather though your Igenex was IND only with only 41 band positive. You also been on abx for pretty long time (which some people seems not tolerate at all)
I personally go mostly by lab values as its only objective thing I can measure and track reliably. I probably wouldn't start abx had I have INDs only
Regarding other modalities such as spiritual/stress/emotional etc, I dont personally put too much weight into them but believe they can help some people. I wasted considerable amount of time trying this approach and it was completely inefficient and even downright detrimental for me
Posted by knobs (Member # 21928) on :
^^ How was the spiritual/stress/emotional detrimental? If you didn't have any symptoms would you truly be happy with your life right now? Are you happy with your career, relationships, upbringing, etc?
How could any spiritual, emotion and stress therapy be detrimental to a person without symptoms if you are truly happy in life?
Do you remember a tick bite or rash? I KNOW the unreliability of that answer.
COLTMAN - I've read many of your posts. You seem to be a very educated person. I've also seen you searching for an answer on here without committing to a plan. What are you afraid of? Everyone is scared of making the wrong decision but you HAVE to make one--that is life.
Posted by knobs (Member # 21928) on :
up
Posted by TerryK (Member # 8552) on :
knobs - after reading some of your previous posts here are my thoughts. The fact that you had what seems to be a strong response to abx and babs treatment seems to indicate that infection was/is an issue.
While it's possible that side effects of the medication are part of the picture, it is worth noting that many people notice a cessation of symptoms that were very bothersome pre-treatment after they stop taking abx. I think that was already pointed out early in this thread. As mentioned before, your body has a chance to clear out some of the toxins from die-off.
Used to be that people were told by IDSA doctors that they needed to wait for awhile after treatment before they would feel better. Even they recognized that this was a common scenario.
I had a major improvement myself after stopping abx for a few weeks. I was in a non-stop herx for months. Stopped abx and after a few weeks or so I had a sudden major improvement in my arm.
For years prior to treatment I had a lot of trouble using my right arm. I could not reach up at all and my arm was very painful. Suddenly I was reaching up to get stuff out of the cupboard! At one point I thought I would eventually lose the use of my arm entirely but now it is completely normal.
Coltman - many people have negative tests even though the actual DNA of borrelia is found in tissue samples. I've read of quite a few cases where antibody tests (the Western Blot) are negative but borrelia is found in tissues at autopsy. Negative tests don't mean much with lyme disease. Even the CDC admits it's a clinical diagnosis.
Terry
Posted by sutherngrl (Member # 16270) on :
Metallic Blue, thanks for saying this so well. Its something that I knew, but you said it in such a clear easy to understand way.
I have had this happen to me actually. I have taken a couple of breaks from antibiotics and did initially feel better after a couple of weeks, only to feel worse soon after.
Thanks for stating it so well!
Posted by sutherngrl (Member # 16270) on :
Also I want to apologize to Knobs. Didn't mean to sound so unthoughtful.
Posted by METALLlC BLUE (Member # 6628) on :
Terry is absolutely right. I have a lot of studies I collected (and can send to people) that confirm those findings regarding culture vs. antibody assays/Western Blots/PCR
Additionally, when concluding the use of antibiotics, the infection itself is no longer under attack and tends to settle down for a brief period -- the "ongoing" herxheimer reactions, even if low grade -- tend to make the person feel chronically sick while on the antibiotics.
When ending treatment, not only do side effects cease (either immediately or gradually), but the infection load has been dropped and cysts have formed. The combination usually leads to "some" decrease in symptoms in most patients. The degree of decrease depends on the strain, the antibiotic combination, the duration, co-infections, toxicity and a variety of other factors.
At any rate, it's important to beware of assumptions. Without objective evidence we should always be skeptical, but as pointed out skepticism doesn't mean you constantly wait and see. A risk to benefit ratio is relevant in making a decision.
The sickest patients tend to mount the weakest attack and weakest response (in terms of improving) to antibiotics, thus requiring a long duration of therapy. Patients who are the sickest often show no bands at all, or only one or two IND or 41kd.
Additionally, 41kd is a crucial spirocettal protein. Whether it's Lyme or not is speculative, but we know for sure if you show 41 on more than one test, the probability is "extremely" high that you do have some form of spirochete. It is well known that not all spirochetes cause Lyme Disease, but it's also known that human beings only contract a few known spirochete infections. There are three families of which include: Brachyspiraceae, Leptospiraceae, and Spirochaetaceae.
Take a guess: Which family is known to carry pathogenic infectious pathogens? If you said all three, you're correct. Out of all of these families each include species that are pathogenic to human beings or other mammals. There are many we have yet to discover.
So, if you have 41kd, and you can reproduce those results on more than one test, the probability increases dramatically that not only are you carrying one of those families, but that if you're demonstrating a wide spread systemic illness, 41kd is likely connected to it. If you've run a battery of tests, and covered all typical basis with an infectious disease specialist, and they can't confirm where that 41kd is coming from, you ought to be even more presumptuous of pathogenic infection.
This is where Brain SPECT scans come in. You can also perform MRI testing, however the likelyhood is only about 15% on average that find evidence. You begin the search of circumstantial evidence. Most people -- if they can afford it -- can find evidence of infection. Using western blots prior to antibiotics, and about 6 weeks "during" antibiotics can demonstrate a profound change in antibody titers and bands have a greater probability of showing up. This is a result of the infectious agent dying, releasing protein antigens that make their way into the blood stream and lymph system where the body can attempt to destroy and or remove them. In the process of doing so, antibodies quickly form to mount an attack. The body can't tell the difference between organic or inorganic material. The result is a clearer response to an infection that was likely hiding in tissues out of reach of the immune system while it was alive.
Additional testing includes using multiple labs. Igenex is by far the most capable, -- having a specialty in tick-born illness. However, if you can financially afford the cost, there are plenty of laboratories that will accept tissue cultures from a variety of body parts, including the digestive track, muscles and nerve biopsies. Multiple tissue samples increases the likelyhood of a positive sample given the infection is slow reproducing and a high load of infection isn't required to case profound disease.
Urine antigen testing during the period of 2-4 weeks after beginning antibiotics can also be useful.
Herxheimer reactions can also be measured in the form of inflammatory markers, and cytokine responses. If baseline testing is performed before treating, during treating, and a month after ending antibiotics, the markers should show differentiated objective indicators. Many patients here test positive for ANA, C-reactive protein, Rheumatoid Factor, Methymalonic homocystein, as one example. Other markers can be discussed with your physician.
Testing for co-infections that "do" often test positive with regular labs can also be an indirect indicator of Lyme Disease (with the 41kd), or....with none at all. Rocky Mountain Spotted Fever, Erlichia, Relapsing F/Q Fever, Chylamdia Pneumonia, and of course Stachybotrys Chartarumi(Mold), Mycoplasma pneumonia & fermantans, and other tick born illness test positive far more often than Babesia, Bartonella and Lyme. However, even if those tests are weak for Bartonella or Babesia, testing for those isn't a bad idea if you can afford the cost.
Viral infections which coincidentally accompany Lyme Disease as an opportunist include CMV, HHV6, EBV, Herpes subtypes (HSV-1 and 2), Aspergillus fumigatus, Crytococcus and Trichosporons.
So let me tell you. Most people here have "not" run these tests, either because of cost, ignorance, or they simply don't want to/can't (for whatever reason).
Most Infectious Disease specialists do "not" run these very typical tests on patients complaining of the symptoms we have. Ironically, these are so so incredibly common and so easy to run. So who is responsible to evaluate and follow-up with finding circumstantial evidence? You are, if no one else has. Talk to your physician, think about it.
If you live in a CDC confirmed epidemic area, that lends further circumstantial evidence -- although it is weak. History of tick bite is also weak and circumstantial -- but still evidence. A rash confirmation weighs heavily as evidence if a tick was also identified. If the rash is a clear identifiable bullseye, then that evidence is even more valuable if the tick was seen attached -- though it is still not "100% proof."
Another factor that is a far removed circumstantial form of support for Lyme Disease is a diagnosis of Crohn's, MS, Fibromyalgia, Chronic Fatigue Syndrome, Mental Illness (Depression, Obessive Compulsive, Eating Disorders, Manic/Bi-polar, etc) Alzheimers, Parkinson's and other immune dysregulatory/autoimmune conditions or nerve degenerative conditions. System disease followed by bone degenerative conditions is also important to consider, given people often assume the knee is of primary concern. The reality is, the back (especially lower back) can degenerate even if other joints show no signs of disease at all. Diagnosis which encapsulate some of a person's symptoms -- but which don't seem to explain them all, is really a big flashing red light that an infectious source, or environmental cause is taking place.
It is my opinion that mental illness especially is not a primary genetic condition. It's usually environmental or nurture induced. The numbers just don't add up that genetics are responsible for the huge epidemic we have of mentally ill people. Predisposition is of course always a consideration in correlating, but I don't think that just because your family has small thumbs that tend to break when smashed with hammers means it was the small thumb (genetics) responsible for the "consequence."
Those are my thoughts regarding the nature of assumptions for those in doubt of their diagnosis. People often find it hard to accept a diagnosis of Lyme Disease or co-infections unless there is some big red flashing neon sign with an IDSA signature confirming a positive Lyme Disease test. The reality is, the IDSA has failed to be objective. The objective reality is, abundant research confirm false-negativity is common, sero-negativity is common, abnormal Brain SPECTs vs controls for Lyme patients, are common. Persistent infection occurs. Culture is confirmation of infection if "many" samples are taken. I.E. "conclusive proof" of infection. Borrelia burgdorferi and other borrelia infections which fall within the common "Lyme Disease" paradigm alter immune response significantly. Borrelia burdgorferi is culture confirmed to change forms, produce biofilms, and share genes between individual spirochetes, increasing biodiversity and improving antibiotic resistance.
[ 12-18-2009, 01:30 PM: Message edited by: METALLlC BLUE ]
Posted by coltman (Member # 21272) on :
quote:Originally posted by knobs: ^^ How was the spiritual/stress/emotional detrimental? If you didn't have any symptoms would you truly be happy with your life right now? Are you happy with your career, relationships, upbringing, etc?
No no and no. But I dont think its anything special though and I accepted many things the way they are (in retrospect many of those deficiencies could been caused by disease - but I was too busy, young , uninformed and had many other issues to investigate this vector seriously then) . I will deal with the problem and do damage control afterward - not the other way around.
And yes - If my main debilitating symptoms go away (fatigue/memory/cognitive and physical performance) -I can deal with everything else. Restoring one cognitive and physical performance is one thing I am actively researching atm and plan to try soon after first ABX cycle
I thought once most everything is caused by depression (fatigue, memory ,cognitive performance). I did even try to address it wit due diligence (SSRI/ psychotherapy) -results were negative (e.g. I ended up was worse than before). There were reasons I was sticking with this direction - there are dime a dozen studies documenting physiological changes in depressed patients.
One can be easily misled about the true picture if he does not investigate the details and analyzes conclusions himself. Many studies are designed to specifically confirm a preconceived paradigm, - those are the things important to keep in mind.
Depression does not cause joint pain( something I should have paid attention long time ago ), neither it causes abnormal labs, neither cardiac abnormalities.One has to be really careful with idiopathic symptoms (IDSA calls them "pains of daily living") before attributing them to"depression" they often are telltales of a chronic disease . "Depression/Stress" are two labels put on everything which does not have a clear cut lab or imaging test. It is very profitable too (doctors get their $200 visit fee for writing Rx, pharma gets profits from a "life time support" drugs)
After 6 month of research into chronic illnesses I am more convinced now that most causes of depression are physiological as opposed to "all in your head" mantra parroted in mainstream (a point of view I held myself until recently)
There are no easy and clear cut answers, but I think at this point chronical infection explanation for my symptoms is the one with most convincing data behind it . - Symptoms ,labs and correlate and independently confirm each other. Plus treatment outcome - my worst symptoms somewhat subsided after a month of doxy , and I am careful to jump to conclusions yet but I think there was some progress on most recent protocol as well
quote: How could any spiritual, emotion and stress therapy be detrimental to a person without symptoms if you are truly happy in life?
If it does not improve anything you just feel like you wasting time. Depending on the resources committed to those things it can be a stress in itself
quote: Do you remember a tick bite or rash? I KNOW the unreliability of that answer.
Had multiple tick bites, never a rash.My familiy used to camp/kayak outdooors most every summer in endemic areas. My step father had a classic rash once. I am pretty certain there was a very high chance of exposure
quote: COLTMAN - I've read many of your posts. You seem to be a very educated person. I've also seen you searching for an answer on here without committing to a plan.
Committing to a plan and researching are not mutually exclusive things. With such complicated and muddy issue as lyme one can never be sure 100% unless he fools himself. I am committed at this point a pretty detailed (yearly plan with a lot of different aspects addressed) , but there is always room for improvement and one has to be ready to change the course if things do not work out .
quote: What are you afraid of? Everyone is scared of making the wrong decision but you HAVE to make one--that is life.
More informed you are before making a decision - better the decision usually is. Provided you really are diligent and honest in assessing the information gathered.
Posted by Snailhead (Member # 18091) on :
Metalic, what a fantastic post. Thank you for "nutshelling" so many points of this disease process.
Posted by knobs (Member # 21928) on :
Coltman - I will tell you this and you can take it how you want. I really think I can help you if we either emailed, or better yet, talked on the phone.
My story is EXACTLY like yours. Joint knee, back and ankle joint pain were my WORST symptoms!! My stomach is still full of SHI* but I'm detoxing major everyday and everyday I get stronger, happier, healthier and more confident, loving, caring.
My definition of hell 6 months ago was standing in one spot for more than 1 MINUTE because my knees and back would hurt soooooo baaaadddddd. This WON'T be a problem for me anymore!
Feeling "SPACED OUT" like everything is not happening, a DREAM! Was another HORRIBLE symptom for me!! No longer. I have confidence, I see things clearly, I'm FREE!!!!!!!!
I've come back on here to share MY story with CHRONIC ILLNESS. I had REAL PHYSICAL AND MENTAL PLAIN buried deep in my STOMACH. My stomach was soooooo twisted up inside I HAD NO IDEA!
I don't know what "levels" of "tests" I did ever really meant. I DO KNOW, however, that I KNOW how to be HAPPY AND HEALTHY AGAIN!
With love,
Scott
Posted by knobs (Member # 21928) on :
up
Posted by glm1111 (Member # 16556) on :
knobs,
Do you think that the marijuana has played an important part in your healing? It does have anti-inflammatory, antispasmodic and antibacterial compononents to it.
Also can be mood altering and give one a sense of calmness, happiness and well being.
I was bitten very badly every day back in the late 70's for a couple of yrs(including having a fully engorged tick pulled off my arm) and was smoking a lot of marijuana.
I didn't have any symptoms until 1983 when I had an accident that jolted my system. I really think that the mj kept this disease at bay. Is this a possibility for you?
Gael
Posted by knobs (Member # 21928) on :
GLM--I'm glad you asked.
When I was on this message board searching for answers and taking antibiotics I THOUGHT I had lyme disease (which I now KNOW I did NOT because of my amazing, practically-overnight recovery) and I was scared.
I have been living in fear and scared like this for MANY years without even knowing it ...probably 9 or 10 years (I'm a 28 yr old male now and loving every minute of it).
MARIJUANA was the ABSOLUTE BUST DRUG for me since I've tried smoking it, which was about 1.5 years ago.
When I smoke I get a sensation of FREEDOM--It's the best depression medicine in the world to me. I have been taking effexor 112.5 mg since the a few months before starting weed until now. I am currently weening myself safely off of that and it has not been a problem at all. I continue to smoke weed when I want to have fun, be creative (i'm a freelance cameraman) or in social situations with other people who enjoy it. My girlfriend and I smoke together all the time and we have the most amazing conversations and sexual experiences.
NOW, weed is not the "ANSWER", weed is not the "CURE" but weed helps you THINK and this should NOT be scary. Sometimes we are so lost in our physical pain and depression that we don't even realize that we don't know how to think clearly anymore. Marijuana CAN take your mind to a very relaaaaxed place if you LET IT. You have to embrace the HIGH and embrace the TRUTH that's running through your head.
Weed has been the vessel that has helped me reach my OWN PERSONAL ENLIGHTENMENT.
I didn't solve the worlds problems, I didn't become invincible I became ME AGAIN. When I had my EPIPHANY I was high.
NOW I know how to feel that high without weed but I still am entitled (Just like ANY beer or liquor drinker of any kind) to indulge when I care to.
I am NOT addicted to Marijuana. I am NOT ADDICTED BECAUSE I HAVE TAKEN POSITIVE, SOBER ACTION ON THE THINGS I THOUGHT ABOUT WHEN I WAS HIGH.
I UNCOVERED the TRUTH for MYSELF.
EVERY SINGLE PSYCH MED IS PROVENLY FAAAAAAAAAAAAAAAAAAAR MORE ADDICTIVE THAN MARIJUANA.
CAFINE has been PROVEN to be MORE ADDICTIVE THAN MARIJUANA GLM--Watch the documentary called "The Union - The Business Behind Getting High" and make a decision for YOURSELF.
"Believe nothing, no matter where you read it or who has said, not even if I have said it, unless it agrees with your own reason and your own common sense."
-Buddha
Psych meds can REALLY work as well but in hinds site, I would have stayed away from them as I don't like the addictive qualities.
There is not ONE PROVEN record of ANYONE dying from MARIJUANA ALONE!!
I can be this PASSIONATE about any subject that I've encountered through my BATTLE with "CHRONIC ILLNESS". I NEVER had lyme and there are A LOT of people like ME on THIS BOARD.
Posted by JOLA (Member # 23498) on :
Hey guys you know some of us like to be able to share some of the thoughts on these forums w/our family/kids to help them understand. I won't be sharing some of these insights of your getting high days. When I post its because i'm looking for answers-not who had a good trip
Posted by sapphire101 (Member # 6638) on :
Knobs, how can you be so sure you have had an overnight recovery? It really hasn't been long enough I don't think for you to be so sure about it. If I remember right you were posting around the 1st of November and were really sick.
For your sake, I truly hope you are right. So many of us have gone through times when we think we are well enough that we won't ever be that sick again only to find out differently.
I've been thorough it so many times myself. Here I sit sick once again. I have had months where I felt good and thought it won't happen again and BAM! So very disappointing and frustrating.
I really wish you well and hope you never had lyme to begin with.
Sapphire
Posted by knobs (Member # 21928) on :
JOLA--Don't read this thread then. If you get NOTHING from me, please don't read this or get inspired by it.
IF, however, you come to this thread with an OPEN MIND, then please, continue to read.
Sapphire--I know for a fact that I never had lyme now. Hindsight is a beautiful thing.
How can I be sure? Because everyday I am learning MORE about my life and why I am on this planet. Sound like hippy, high, nonsense? Call it what you will. I have moved on with my life and many here haven't.
Bless.
Posted by METALLlC BLUE (Member # 6628) on :
quote:knobs How can I be sure? Because everyday I am learning MORE about my life and why I am on this planet. Sound like hippy, high, nonsense? Call it what you will. I have moved on with my life and many here haven't.
For most of us who haven't moved on, it's not for lack of doing everything we're supposed to.
Additionally, perhaps it's just me, but I feel as though I'm being condescended to when I read some of your posts. Just letting you know in case it's unintentional. It doesn't bother me personally, but others might.
Posted by glm1111 (Member # 16556) on :
JOLA,
What I posted wasn't meant to be about a "HIGH" from marijuana. Sorry if it was offensive to you or anyone else.
I have a medical background and was really looking at it as more of a medicinal drug since it seems to have kept this disease at bay from me for an extended period before I got sick.
knobs,
I was looking for a more medicinal insight from you as far as the anti=inflammatory, antibiotic, antispasmotic effects of this drug, and the possibilities of it putting you into remission.
Given all of the symptoms that you had prior to smoking MJ, I suspect that you could have definitely had Lyme disease as I did and still do.
I have been to the "therapy" sessions" where the psych community will tell you that peoples symptoms from a chronic illness are psychosomatic due to past anger, family abuse etc. That does feel condescending to me.
Sorry, but when a vulgar tick spits parasites, bacteria, mycoplasma etc into your body I just can't quite grasp the "psych communities" rationale that our suffering is from past trauma.
I will admit that a lot of us have to heal that part, but I just can't buy that is the whole ball of wax. It's like saying, if a snake bites you and you are dying from the venom, you can't survive because of past abuse. Just doesn't fit. Actually feels a little cultish to me.
So again I ask you that you take a look at the medicinal properties of mj and the possibility that it has put you into remission???
Gael
Posted by JOLA (Member # 23498) on :
Gail no problem w/anything you've said. enjoy reading your posts. think knobs has gotten off track w/what most of us are looking for all the best to you
Posted by coltman (Member # 21272) on :
quote: When I was on this message board searching for answers and taking antibiotics I THOUGHT I had lyme disease
Your Igenex WB was negative IMHO. You also been on ABX for 10 months.
And ,no offence, but some of your posts do look like you are really high.
quote: When I smoke I get a sensation of FREEDOM--It's the best depression medicine in the world to me.
Well what I can say. lol. Enjoy your newly found "discovery" of marijuana!
quote: I can be this PASSIONATE about any subject that I've encountered through my BATTLE with "CHRONIC ILLNESS". I NEVER had lyme and there are A LOT of people like ME on THIS BOARD.
Lol. This board is full of weird people. So yeah I guess you are correct in this regard! I haven't seen anyone posting who was so obviously high though!
[ 12-19-2009, 06:15 PM: Message edited by: coltman ]
Posted by sutherngrl (Member # 16270) on :
I have to concur with Coltman's last statement; the part that says.....
"I haven't seen anyone posting though who was so obviously high though"!
Posted by trigal2 (Member # 20578) on :
Wanting to comment on glm111's post regarding the "Psych Community";
As someone who is professionally a part of the "Psych Community" (I am a practicing Ph.D. in Clinical Psychology with a specialization in Health Psychology/Behav.Medicine,) it is important to note that any good/ethical Psychologist or Licensed Mental Health Professional SHOULD always rule out an underlying medical condition prior to slapping on a mental health diagnosis of anxiety or depression or somatic disorder etc..
While I have seen physical manifestations of latnet psychological issues, to assume this is true with someone with a chronic illness does a great dis-service to the client.
Of couse many medical illness will bring with them psychological symptoms but these are secondary to the medical problem and should not be looked at as the primary cause.
Also "Psychosomatic" does not imply that an illness or set of symptoms is all in someone's "head".
Psychosomatic disorder implies a symbiotic relationship between the mind and body - that a set of symptoms involves both the mind and the body. A psychosomatic illness originates with emotional or psychological stress or environmental stressors which eventually progresses to physical symptoms, usually when a person's immune system is compromised due to such stress.
But I agree too many Psychologist want blame past unresloved issues on current physical symptoms and too many MD's want to play Psychologist without proper training and do a psychological evaluation in 10 minutes! Gee even those of us who have Doctorates in Psychology can't do that! We need at least 2 hours to do a full evaluation, so I often wonder how a PCP or otherwise can diagnose a mental health condition in 10 minutes or less....."oh you don't have Lyme you are just depressed and I know this without even doing a Psych eval!!!!"....An all to familiar scenerio..
Okay I will jump off my soap box now as I think I have gotten a bit off topic. TG
Posted by glm1111 (Member # 16556) on :
trigal2,
Point well put and well taken. I agree that people with a chronic illness can be depleted in certain areas such as serotonin.
Unforunately, there are not enough doctors in the psych community who are as "aware" as you seem to be.
Partial Quote
"While I have seen physical manifistations of latent psychological issues"
How do doctors know that there isn't some kind of dis-ease process that brought the psychological issues on such as undiagnosed brain parasites?
Well, I guess there isn't any pat answer and we can only hope for the best, Thanks for your post,
Gael
Posted by trigal2 (Member # 20578) on :
glm111; Thannks for your reply and great question. I think it is one that can be debated (in a productive manner!)from many stand points.
I agree it is hard to know which is causing which and I can only comment on what I see in my own practice.
For example, I do find that alot of people who are going through loss/grief or working through old unresolved loss issues sometimes, during therapy, present with an onset of headaches, neck pain, and back pain. I find the same with clients who have issues with abuse etc.
Posssibly this is simply where their body holds the tension of the emotions - but possibly not.
The important thing, IMO, is to NEVER assume any physical symptoms is of a psychosomatic origin -even if the timing suggests that it is.
I sit on the same side of the "couch" in a sense and would never want someone to tell me that my symptoms are being caused by an emotional/psychological issue without first ruling out the possiblity of something else.
Plus....how do we not know that the stress of therapy or any given situation has not caused a flare up of some auto-immune problem or otherwise. It happens all the time! I went through a terrible loss a few years ago and BOOM my old lyme issues came flaring up again...
So I agree...there is no easy answer - that is why I think it is soooo important for ANY medical or mental health professional to really be aware of these dynamics before they just slap some psych. diagnosis on someone. TG
Posted by Gahagan (Member # 21194) on :
Metallic Blue....I love reading your posts. Very informative and articulate. Thank you.
Posted by knobs (Member # 21928) on :
PAST EMOTIONAL SCARING IS BY FAAAAAR THE MOST IMPORTANT PART OF YOUR HEALING.
I want ALL of YOU to continue on the path that you are going on and PLEASE, PLEASE work towards recognizing previous emotional trauma in your life and COME TO TERMS WITH IT!!!!!
I can GUARANTEEEEE THAT WILL BE THE BIGGEST STEPPING STONE TOWARDS YOUR RECOVERY.
I am NOT writing this post while high. I have an abundance of positive energy that needs to be spread.
For those that ridicule my use of marijuana, I believe you need to take a LONG, HARD look at YOURSELF in the mirror. I DON'T drink alcohol, coffee or indulge in ANY other substances. I am now OFF my 112.5 mg of EFFEXOR and have NEVER FELT BETTER.
I will NOT continue this post anymore. This thread is obviously proving to be NO benefit to anyone anymore.
PM if you want to talk. I'm always here.
With love,
Scott
Posted by coltman (Member # 21272) on :
quote:Originally posted by knobs: PAST EMOTIONAL SCARING IS BY FAAAAAR THE MOST IMPORTANT PART OF YOUR HEALING.
I can GUARANTEEEEE THAT WILL BE THE BIGGEST STEPPING STONE TOWARDS YOUR RECOVERY.
I am NOT writing this post while high. I have an abundance of positive energy that needs to be spread.
You sure are self righteous though if you are not on drugs. How can you "GUARANTEEEEE THAT WILL BE THE BIGGEST STEPPING STONE TOWARDS YOUR RECOVERY" (no less) ?
I mean really think about it just for a minute(preferably while not on drugs ) - you cant extrapolate your personal experience and your own psychological problems, nor their solution on everybody else.
quote: For those that ridicule my use of marijuana, I believe you need to take a LONG, HARD look at YOURSELF in the mirror. I DON'T drink alcohol, coffee or indulge in ANY other substances. I am now OFF my 112.5 mg of EFFEXOR and have NEVER FELT BETTER.
You know you could be better because you are off Effexor .
I dont believe marijuana has much benefits besides being an anti depressant. It does have potential for negative effects though - reason for me to not touch it .
Like majority of people in US I have recreational experience with pot, and I dont think its solution for anything or helps anything but making you feel good
Posted by coltman (Member # 21272) on :
quote: Posssibly this is simply where their body holds the tension of the emotions - but possibly not.
WHAT? WHAT? I mean "tension of emotions"? How do you measure it? How do you tell where its "located"? You SPECULATE! And on basis of this speculation you guys prescribe anti depressants. (or worse -anti psychotics) which are proven to cause serious permanent damage!
I am aware of psychiatrists looking at MRIs of "depressed" patients and seeing hypoperfusions and there declaring "depression causes brain changes". This is such blatant and criminal speculation without based on just correlation
The whole history of psychiatry (and I will clump it with "clinical" psychology as well -which is less abusive but imho no less detrimental to the overall progress in solving mental health issues) is one of the abuse .It never cured or really helped anybody
quote: The important thing, IMO, is to NEVER assume any physical symptoms is of a psychosomatic origin -even if the timing suggests that it is.
Yet everybody is so ready to jump on psychosomatic bandwagon! I mean I can get any diagnosis I want if I go and see psychiatrist/psychologist. Your score rated "tests" and DSM IV diagnostic criterias are complete junk, there is no objectivity whatsoever
quote: Plus....how do we not know that the stress of therapy or any given situation has not caused a flare up of some auto-immune problem or otherwise. It happens all the time! I went through a terrible loss a few years ago and BOOM my old lyme issues came flaring up again...
So I agree...there is no easy answer - that is why I think it is soooo important for ANY medical or mental health professional to really be aware of these dynamics before they just slap some psych. diagnosis on someone.
Its great you understand that. Problem is majority of people in your field dont
Posted by METALLlC BLUE (Member # 6628) on :
I think Psychiatry and Psychology are great resources. They hold far more value than most people think. Like most tools or "specialties" -- the value of the tool is independent of the user of the tool. The user of these tools have too often been incompetent, inexperienced or too speculative.
Most that I've met -- and I've met enough to make a reasonable assessment, is that they run few if any tests in the actual "practice" of their specialty. They see what they expect to see rather than delegating responsibility to other specialists who can help them make a better assesment of the patients health and needs. Almost every single one prescribed anti-depressant medications, or tried to give me advice that was entirely out of line with the context of my situation.
While their ignorance was no different than other physicians -- which is something completely understandable given how poor tick-born disease is understood -- they didn't make any attempt to even try to distinguish the underlying cause. They just "assumed" it was best to treat the symptoms. When asked about searching for an underlying cause, they usually said "Not necessary, you're depressed, it's clear." Well, yes, but why? Who, what, when, where, why, and how?
The tools available to them are vast. There is abundant research in the field of psychology and psychiatry to be effective, but rather than choosing specific aspects of their field to train in, they try to treat patients who they are not qualified to treat other than the fact they have an M.D.
That is my gripe in respect to Coltman's post. The only psychiatrist who even remotely tried to help me, recently -- after 5 years of interaction -- told me that since I wasn't getting better from Lyme Disease treatment, that I needed to "get on with my life" and start thinking about accepting my illness and stop searching for a solution.
Is she out of her mind? Absolutely. Worst advice ever. You don't tell someone with a persistent infectious disease that is crippling them to "stop" searching just because the patient has struggled for many years. It's impossible for the patient to accept that, because you can't accept the unacceptable. If something is tolerable, ok, fine, but if it's intolerable and something you can't live with, you can't stop!
Now for the good news. Although she made these comments, she did "investigate" early on when I told her I felt I had Lyme. She even contacted a Lyme Literate Psychiatrist in New Jersey and was given advice on which medications to use to attempt to treat my symptoms while I was receiving other antibiotic therapies from my Infectious Disease specialist. The therapies were tough at first since we had a few trial and error issues. Eventually I found a treatment that helped stabilize some symptoms to a "minor" degree. That was a big thing though. Minor progress in treating intolerable symptoms is a very big step.
I'm disappointed with her last piece of advice to me and thus haven't returned for now. I only have to see her every 6 months. If I chose I could avoid it all together and receive the prescriptions from my primary. I've been stable on the drugs for many years and get blood work on schedule -- so I'm quite safe.
In the end, psychiatrists and psychologists need "more" training, and need to specialize rather than generalize which is what they tend to do -- from my personal observation. They also need to advertise their specific specialty/sub-specialty upfront instead of the poor patient having to come in, go through hours of examination and discussion only to find out the counselor wasn't even capable of helping the patient (Though the counselor usually thinks they "are" capable when the patient disagrees).
To top it off, most counselors and psychiatrists tend to send out messages that I usually perceive as pompous (know-it-allism). This trend is not helpful. I've told them directly that I felt this way, and do you know what their response was? "I'm sorry you feel that way." Are you ****in' kidding me? Even their response to being told that they "might" be giving the impression of being pompous, they respond with a pompous deflection.
There are some great psychologists/social workers/and other mental health care professionals, but in my experience they are far and few. This is why when I come across one -- usually from other patients -- I make notes and record their information so other patients can be referred.
Fortunately for me, I did eventually find a counselor who was able (by a great deal of failures) to handle my mental health care. Instead of advising me and trying to label me, she simply said she was there to just listen and would give some advice only when asked. She also would never judge me if I rejected the advice. She would listen to my reasons why. If she disagreed she would say so, but she wouldn't argue it. She would let me discover on my own whether what she said would ring true. Often it didn't, but sometimes it did and so I learned and I came to trust her. She was very unhelpful at times but I could tell she was trying very hard which meant she was invested. That's the difference. Even someone incompetent can be useful along the way as long as they believe in "you" -- and are willing to admit they don't know everything but they're willing to help you find answers or to even self educate themselves.
Posted by coltman (Member # 21272) on :
quote:Originally posted by METALLlC BLUE: I think Psychiatry and Psychology are great resources. They hold far more value than most people think. Like most tools or "specialties" -- the value of the tool is independent of the user of the tool. The user of these tools have too often been incompetent, inexperienced or too speculative.
The tools available to them are vast. There is abundant research in the field of psychology and psychiatry to be effective, but rather than choosing specific aspects of their field to train in, they try to treat patients who they are not qualified to treat other than the fact they have an M.D.
Well its true there is large amounts of research in that field. But in this case one has to question outcomes .- There is no progress made by that field whatsoever! -at best they provide short term fixes and most likely on their drugs for life
It is similar in many way to cancer research -treatment is worse than disease and the bottom line (outcomes ) are marginally better than placebo (and sometimes worse)
Psychoactive drugs are one of the few areas I have interest in, and I researched enough to see that majority of drugs for psychiatric disorders could be extremely harmful , especially if used long term
I d say be very very wary of their "tools" -they have a few which could be useful, but its a very dangerous territory
In many ways its because their field is very reluctant to do honest research of the long term and negative sides effects and bulk of peer reviewed papers are junk produced by pharma companies when pushing the drug to the market
For many drugs the precise mechanism of action is unclear or even worse - unknown. Consider they do not have any proper controls to measure effectiveness for most anti-psychotics and anti depressants and you basically gamble your brain for unknown benefits
I would frankly go with thread starter's advice here and use THC before going on any antipsych/antianxiety/antidepressant med.
There is 2 drugs I think which have value for occasional use, but thats about it ( its ritalin and provigil)- they have some real research showing their benefits.
Posted by djf2005 (Member # 11449) on :
Provigil is one of my favorite all time RX drugs.
It was a miracle for me when I was 70%, it helped push me more towards 100% and kept me functioning.
I won't hesitate to use it again once I am back there.
It was on of the few meds my LLP wanted me to try I did not take issue with, and was pleased when I was told I could stay on it for whatever length was needed.
Medicating w/ physc meds IMO is a delicate dance, but again, I think stating that "all physc meds are harmful" or "all physc meds are miracles" are too broad and general statements.
If a given individual has success w/ a given practitioner and/or med, who am I to say if it's right or wrong?
And on the other hand, if an individual has a bad experience and does not see benefit or even worse feels even less of himself/herself after medicating, again, who am I to say what's right or wrong?
Granted, I do believe that these medications are not tested in a well enough manner usually and have the potential to do a great deal of harm. I also believe they have the potential to do a great amount of good. Unfortunately, the sale of these substances as with most in this country are pushed so heavily upon the unsuspecting sick consumer that it takes a very prudent patient to know what he/she is getting themselves into.
Knowing what we collectively are getting ourselves into in advance can save a lot of heartache in the long run.
Too often we blindly accept whatever words are uttered from a "MDs" mouth and just swallow whatever pill was written down on the RX pad w/o knowledge of the drug nor the real issue in our own body causing the disharmony.
Physc meds should be discussed at length w/ well informed Drs who are trained and I think our perception of them should be based upon personal and individual experience while not creating a bias from. Albeit it hard to do so. I struggle with this often; one's own perception and experience is a powerful influence and not something that is easily overcome.
Best
Derek
Posted by knobs (Member # 21928) on :
Had to chime in.
Sounds like certain people are taking recognition in the power of emotional trauma.
Colt--glad to see you accept THC over other things.
p.s. I'm on day 5 of quitting 112.5 mg of Effexor cold turkey. No mental instability at all.
Only smoke a couple puffs of weed a day.
Life is beautiful.
Posted by lymielauren28 (Member # 13742) on :
I smoked a lot of pot when I was younger and I found it to have the complete opposite effect than you are describing Knobs. It didn't make me THINK, it made me unable to think clearly - and that's a big part of why I smoked so much of it. I couldn't effectively deal with all of my problems and the many things that were going on in my life and I used marijuana as a means of escape.
In the end I quit smoking it because it made me a lazy, mindless slob and I started having heart palps every time I was high.
I appreciate thinking with a clear mind and as someone who smoked for years you cannot tell me that that's possible while under the influence of marijuana.
Emotional healing has it's place but it's not the be all end all in the treatment of Lyme disease. It's only one piece of the puzzle. To suggest that it IS the be all end all is irresponsible.
I'm glad that you've had an awakening and figured some things out for yourself, but I don't think that'll work for most here.
Smoke weed and forgive your parents and you'll regain your health... Nope. Just doesn't work that way. We could only wish it were that easy...
[ 12-24-2009, 11:19 AM: Message edited by: lymielauren28 ]
Posted by knobs (Member # 21928) on :
"Smoke weed and forgive your parents and you'll regain your health."
^^^^^^^ NEVER did I say something so simple. Don't ever use quotations to "quote" something I did NOT say. Shame ....
Posted by lymeHerx001 (Member # 6215) on :
quote:Originally posted by knobs:
"I've been scared to truly love (people, myself, LIFE) because of the fears of failure and/or loss that I will face ...The question of "when one of those two things defeat me, what do I do next?"
The reason for this problem stems from many things. Observing (and being influenced by) my fathers behavior for 26 straight years has taken its toll on me. His relentless negativity (whether intentional or not) buried my self worth and love deep into my gut, joints, brain and heart. To be fair to my father, many other stressors acquired through my 'functional' life have contributed to my overall health, but none nearly as potent as the wrath of my fathers verbal weapons. My toxic relationship with my ex-girlfriend also encouraged me to bury my hate and allow myself to sink deeper into oblivion. I believe the sickness I have been dealing with for the past 5-6 years has been a direct result of those things.
I feel the same %100/ Its the ontological problem that every human presents with. Thoght those suffering seem more needy then those appearing to do quite well. We all expire in the end. So have a laugh a hug or what ever is the kindest thing to yourself.
Posted by lymeHerx001 (Member # 6215) on :
Ahh the infamous "floaters" Always hated those
quote:Originally posted by Lymeorsomething: Djf is right. These problems should never be oversimplified. Many people here have already heard the "it's all in your head" thing and knew it to be preposterous.
You don't get floaters or complex endocrine disruption because of a deficiency in soul searching...one could go on and on...
Don't profess to have had an epiphany and then come on here and stigmatize an already stigmatized disease further.
Posted by lymielauren28 (Member # 13742) on :
Knobs, I deleted the quotation marks so it wouldn't appear as though those were your exact words. I apologise.
I do think your heart is in the right place and that you're truly trying to help others here. I can feel the excitement and enthusiasm in your posts over some of the things you've discovered about yourself and your life and there's nothing wrong witn that.
I simply wanted to share my experiences with marijuana and point out that for those that are truly sick, soul-searching is not going to cure their disease. Will it help? Absolutely. But at the end of the day they will still suffer from Lyme disease.
Posted by WildCondor (Member # 434) on :
Don't give up...end of story.
Posted by knobs (Member # 21928) on :
.
Posted by julielynne4 (Member # 20336) on :
Ok, I know this doesn't exactly go along with the discussion but.....(I am not sure if knobs is still reading this, as I noted the dramatic period in the last post but...
Knobs, I really was shocked to read that you are on day 5 of going off Effexor cold turkey with no mental instability! WOW that is awesome...
I was on Effexor about 10 years ago and started to wean off it, then just stopped. I thought I was dying - it was hell. I had to stay home from work for 5 days due to the INSANE mental issues. It was a total nightmare.
It scares me just thinking about it. I am glad that you did not experience these Sermptoms! Phew! I wish you continued health and wellness! julie
Posted by Pam08 (Member # 19203) on :
Hi Knobs,
If you are still reading this I wanted to say that I am glad that you are feeling better no matter what the cause of your illness was/is. Because in the end all that really matters is getting well again. I do hope that continues for you.
I do also want to say though that I am a bit concerned that you seem to be making major medical and life decisions while under the influence of marijuana. Making these sorts of decisions while under the influence of drugs does not seem like a good idea.
People do not think clearly when they are high or intoxicated (even if they think they are). From reading your posts you do not sound clear headed in my opinion.
I agree that people need to keep an open mind. And there very well may be people here who don't actually have lyme. BUT I think keeping an open mind works both ways. I hope that you will also keep an open mind when it comes to lyme disease.
I hope that you continue to get well BUT if you find that you are not progressing anymore or that you are getting worse please consider that you still could have lyme disease.
From reading your current posts and your past posts I do think it could be possible for you to have lyme disease.
As others pointed out...there are symptoms that you experienced that don't seem to fit if your illness was due to depression or emotional problems.
Also you had a very strong response to abx which seems to be consistent with lyme disease. I am no doctor so I can't say for sure but it seems that your reaction to abx would be more than just side effects. But as I said I am not a doctor so this is speculation on my part.
In reading your past posts you seemed to have legitimate reasons why you felt that your illness was NOT being caused by depression so keep that in mind as well.
I saw your test results and you had a lot of IND bands show up. I just wanted to share with you my own experience.
I tested CDC positive for lyme disease through Quest AND Igenex. And some of the bands that were absolute positives on Quest were IND on Igenex. So I know that in MY case those IND on Igenex were positives. So it is my personal opinion that IND can mean that you are positive for those bands. Just keep that in mind.
Just a suggestion...maybe you could quit smoking pot for a while and see how you feel. See if you still feel well or if you feel ill again. And see if you still have the same thoughts about all of this. It just concerns me that you are making such important decisions when your judgment could be clouded.
Also keep in mind what other people here said. Like they said...there could be many reasons that pot may be helping you.
It could be that you have lyme and pot is having antibacterial effects on you or that it is working as a pain reliever (or both). There are many people that do have lyme disease that see benefits from marijuana so the fact that it seems to help you does not rule out lyme disease.
OR it could be that you don't have lyme and pot is having antidepressant effects on you.
OR it could just be that you feel better because you are high.
So just keep in mind that there could be a number of reasons why you see some benefits from pot.
Lyme Disease can cause depression as well as many other emotional problems so please be absolutely sure that the depression you were experiencing was actually the cause of your illness and not just a symptom of lyme disease or some other illness.
Oh and please get the black stool issue checked out. As someone else mentioned that can be very serious. That can indicate internal bleeding of some sort so PLEASE get that checked.
Anyhow...I really hope that you have found the key to your illness and continue to get well.
BUT in time if you still find that you are ill please remain open minded to lyme disease (as well as other illnesses). Don't just ignore lingering or worsening symptoms if they do happen.
Take Care!
[ 01-03-2010, 02:43 AM: Message edited by: Pam08 ]
Posted by Pam08 (Member # 19203) on :
By the way...
As you all read above I definitely have lyme disease and tested CDC positive with both Quest and Igenex. I have been treating for almost a year now and am not even close to being well again. It is a long process and can take a long time to treat.
So lack of improvement does NOT necessarily mean that you don't have lyme and should quit treatment.
Posted by Fordace (Member # 14874) on :
METALLlC BLUE - EXCELLENT, Thank you.....
Posted by knobs (Member # 21928) on :
Wow Pam. Some weird advice that you're giving me.
"if you find that you are ill please remain open minded to lyme disease (as well as other illnesses)"
Still making improvements everyday. My life is very rich.
I'll say it again. I don't now, nor did I ever have Lyme disease.
Chronic Illness is that 'culprit' in my opinion. Chronic Illness manifests itself into REAL, physical and mental scarring.
What is the cause of your 'chronic illness'? I don't know, but dig deep and you'll probably find the answers in your emotional scarring.
I'm still off effexor without any problems.
I get really tired of coming on here to 'preach', but feel it's still worth it if I reach anyone.
Posted by unsure445 (Member # 15962) on :
I'll keep this brief and to the point.
Metallic Blue, you are AMAZING!!!! Can I send you to my future LLMD appts. in my place? You can be my proxy.
Wild Condor, your short and to the point posts were EXACTLY what I needed to read this morning. Thank you so much!!!
I may have to keep rereading them every day until my next LLMD appt..
Knobs, I am glad you are doing so much better.
Posted by MagicAcorn (Member # 8786) on :
Knobs it is very hard to discuss things here as it always turns into a bashing session. You are feeling good and yet some posters have chosen to discount it because it is pot.
It is not a gateway drug as is usually argued all the time, it is usually the drug of choice. Many people who smoke pot are teetotalers because they do not like there judgment impaired.
G-d gave us a wonderful substance that is very helpful in the natural state. No processing or fermenting involved.
Arnold Schwarzenegger smoked in "Pumping Iron" and was seen enjoying it very much. Thanks to his legislation you can now grow it in your homes. To Arnold marijuana "isn't a drug, its a leaf."
Famous Pot smokers off the top of my head...
President Barack Obama Linda McCartney Paul McCartney Mayor Michael Bloomberg Sir Richard Branson Bing Crosby Bob Hope Chrissie Hynde Richard Feynman Carl Sagen Newt Gingrich Michael Phelps Stephen King Ted Turner Montel Williams Whoopi Goldberg Queen Latifah Art Garfunkel Norman Mailer Jack London Victor Hugo Carl Sagen
The list is endless...... Knobs if pot works for you - use it.
Posted by elley0531 (Member # 9434) on :
I will be honest, I'm all for people using whatever works for them to get well. Just keep in mind the same things don't work for everyone.
I actually got my first panic attack that was the real clue to my relapse WHILE high. Not to mention, with all the smoking I've done in the past 15 or more years, it 9 times out 10 made me groggy, sleepy, and the opposite of clear headed. ALL drugs and chemicals affect people differently. My fiance feels great on it, which is good for him. For me, it is not a drug in which I function well at all and it is not because I haven't come to terms with past demons.
As for emotional healing, thats an important aprt of anyone's life and should be taken seriously and people should use whatever helps them to do such. I have felt at my best with no chemicals in my body except the infrequent .5mg klonopin dose. For some, pot works. Whatever floats your boat as long as your health (that means mental and physical since you can't have one without the other) is your primary focus. I do better facing my demons drug free and trust me it has nothing do with not letting the pot work the way it is supposed to. Its a drug, end of story, some will feel great with it, others won't.
Posted by knobs (Member # 21928) on :
Still feeling great. Working again, pursuing creative endeavors and indulging in some sweet food along the way.
Posted by seekhelp (Member # 15067) on :
Great!
Posted by METALLlC BLUE (Member # 6628) on :
Glad to hear things continue to go well.
Posted by knobs (Member # 21928) on :
If you're reading this right now, please, try to open up and be honest with yourself!
Posted by seekhelp (Member # 15067) on :
Are you saying stop listening to LLMD's and their diagnoses?
Posted by julielynne4 (Member # 20336) on :
I saw this thread pop up again and was wondering how you were doing, knobs. I am happy to read that you continue to feel good!!
Not so sure I agree with the Buddha quote, though....actually, 100% certain I don't....but I appreciate and admire your passion!
Julie
Posted by kellephant (Member # 24885) on :
intesting... i worried that my problems were mental as well, but all 3 psychologist that i saw believed that i actually had a physical problem that was not stemming from my emotional state. i WISH it would have been about dealing with my problems... i'd be feeling a heck of a lot better now!
Posted by METALLlC BLUE (Member # 6628) on :
![[Smile]](smile.gif)
You have no idea how much I wish I was a brilliant scientist/lab person who could scrutize every aspect of the lab operations to feel 100% confident about it. To me, it's the core of the whole Lyme community. ![[Frown]](frown.gif)
