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???
Posts: 124 | From Toronto | Registered: Aug 2009
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btmb03
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The post above was edited- resulting in this response being edited.
[ 12-17-2009, 01:22 PM: Message edited by: Anna Lee ]
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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.
Posts: 124 | From Toronto | Registered: Aug 2009
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WildCondor
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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.
posted
^^^ 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.
Posts: 124 | From Toronto | Registered: Aug 2009
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WildCondor
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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!
posted
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....
Posts: 343 | From North Carolina | Registered: Oct 2008
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djf2005
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posted
Thank you for speaking some sense Connor.
Agreed 100%.
Much appreciated.
Best
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
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.
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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.
Posts: 124 | From Toronto | Registered: Aug 2009
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btmb03
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Thanks knobs, will definitely check them out as I am able. Much appreciated!
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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
Posts: 856 | From MA | Registered: Jul 2009
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posted
^^ 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.
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TerryK
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posted
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
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sutherngrl
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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!
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sutherngrl
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Also I want to apologize to Knobs. Didn't mean to sound so unthoughtful.
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METALLlC BLUE
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posted
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 ]
-------------------- 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.
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.
Posts: 856 | From MA | Registered: Jul 2009
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posted
Metalic, what a fantastic post. Thank you for "nutshelling" so many points of this disease process.
Posts: 374 | From United States | Registered: Nov 2008
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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
Posts: 124 | From Toronto | Registered: Aug 2009
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Posts: 124 | From Toronto | Registered: Aug 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
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
-------------------- 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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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.
Posts: 124 | From Toronto | Registered: Aug 2009
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posted
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
Posts: 146 | From Vancouver, BC | Registered: Dec 2009
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posted
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
Posts: 495 | From KY USA | Registered: Dec 2004
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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.
Posts: 124 | From Toronto | Registered: Aug 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- 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.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
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
-------------------- 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
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
Posts: 146 | From Vancouver, BC | Registered: Dec 2009
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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!
posted
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
Posts: 376 | From New Jersey | Registered: Jun 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
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
-------------------- 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
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
Posts: 376 | From New Jersey | Registered: Jun 2009
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posted
Metallic Blue....I love reading your posts. Very informative and articulate. Thank you.
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
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posted
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
Posts: 124 | From Toronto | Registered: Aug 2009
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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
Posts: 856 | From MA | Registered: Jul 2009
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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
Posts: 856 | From MA | Registered: Jul 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
-------------------- 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.
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.
Posts: 856 | From MA | Registered: Jul 2009
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
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
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
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.
Posts: 124 | From Toronto | Registered: Aug 2009
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
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...
posted
"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 ....
Posts: 124 | From Toronto | Registered: Aug 2009
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
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.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
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.
Posts: 2905 | From New England | Registered: Sep 2004
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
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.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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