posted
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 ]
Posts: 124 | From Toronto | Registered: Aug 2009
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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.
posted
^^ 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.
Posts: 124 | From Toronto | Registered: Aug 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
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..
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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posted
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!
Posts: 123 | From Minneapolis, MN | Registered: Jul 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
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.
Posts: 571 | From Massachusetts | Registered: Oct 2008
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djf2005
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Member # 11449
posted
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
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
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
Posts: 3975 | From usa | Registered: Aug 2007
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posted
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!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Lymeorsomething
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posted
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.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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sutherngrl
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posted
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.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
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.
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
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posted
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.
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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TerryK
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posted
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
Posts: 6286 | From Oregon | Registered: Jan 2006
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gwb
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Member # 7273
posted
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.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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.
Posts: 4590 | From Midwest | Registered: Jun 2008
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seekhelp
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Member # 15067
posted
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.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
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.
Posts: 146 | From Vancouver, BC | Registered: Dec 2009
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seekhelp
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Member # 15067
posted
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. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
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.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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.
Posts: 4590 | From Midwest | Registered: Jun 2008
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btmb03
Unregistered
posted
Oh I see - good point Gary! Makes sense.
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posted
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.
Posts: 124 | From Toronto | Registered: Aug 2009
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
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
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
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.
Posts: 124 | From Toronto | Registered: Aug 2009
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posted
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.
Posts: 124 | From Toronto | Registered: Aug 2009
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posted
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.
Posts: 124 | From Toronto | Registered: Aug 2009
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Black stools are usually a sign of bleeding in the GI tract, so please have that checked out right away.
Posts: 345 | From East Coast | Registered: Apr 2008
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"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.
Posts: 124 | From Toronto | Registered: Aug 2009
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
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!!
Posts: 6200 | From Brussels | Registered: Oct 2007
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METALLlC BLUE
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Member # 6628
posted
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, ....
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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 ]
Posts: 495 | From KY USA | Registered: Dec 2004
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
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.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Knobs did you have any labs done? like igenex wb, cd57, VEGF? c3a/c4a? If so what were the results?
Posts: 856 | From MA | Registered: Jul 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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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.
Posts: 124 | From Toronto | Registered: Aug 2009
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posted
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.
Posts: 124 | From Toronto | Registered: Aug 2009
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
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
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
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.
Posts: 124 | From Toronto | Registered: Aug 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
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
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
"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.
Posts: 124 | From Toronto | Registered: Aug 2009
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
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
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
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
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
^^ I never doubted the strength of any lymenet member. LIKE I SAID, people with CHRONIC ILLNESS SUFFER FROM REAL PAIN.
Posts: 124 | From Toronto | Registered: Aug 2009
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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?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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