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Old 10-01-2005, 08:18 AM   #1
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upset- saw primary care dr- he's not sure lyme- thinks I have power to heal myself!!

Hi all.

I am very upset right now. For those of you that have read my prior posts, you know I was recently diagnosed with late stage lyme and have been so confused over the diagnosis, after being diagnosed with chronic fatigue for 10 years. Well, I am finally coming to terms with it- the more people w/ Lyme I meet, the more I feel I have in common with them and feel that I DO have lyme disease. Well, yesterday I saw my primary care dr and I discussed the lyme diagnosis with him. I recently started w/ this dr- he is integrative/holistic and I was very happy the first few visits. I asked his opinion if this is indeed at the root of my problems. ( I really though he believed in Lyme, since I had told him about my Lyme diagnosis last appointment and he was sympathetic.) Anyway, what he told me upset me very much. He said that, it is hard to say when and how my problems started and that sometimes there is a long time of family problems, physical or emotional, that get carried from generation to generation. He then said that he thinks I have been focusing my recovery in the wrong direction, rather than focusing on what medications and tests I need to get me well, I should be focusing on my inner spirit, exercise, diet, yoga, etc. (I follow a candida diet already, which I am sure you know it not easy!!!) He went on to say that I have the power to heal myself. He then said that he is not even sure I do have Lyme Disease- he said "well, according to the CDC, you don'thave lyme and the only test that shows it is in question anyway" (referring to IGenex). He said that often drs are trying to pronounce things as "abnormalities" that are not abnormalities to make money on patients that are very vulnerable and desperate. On one hand he said "oh, i don't think it's in your head", but on the other hand, he told me that he believes that mind body psychotherapy would help me. He also asked about my family and when it came up that my family pushes things under the rug and I have no support from them, he said many of my problems can be stemming from that. He went on to speak about the power of the mind and emotions in affecting the immune system and that many emotional issues can be expressed physically and can suppress the immune system. He gave the explanation that many people are exposed to various viruses, infections, etc, including Lyme, but yet they don't get sick and he said probably the difference between those people and "people like me" is perhaps some underlying emotions or stressors or something in my family or something like that.

He is referrring to the field of psychoneuroimmunology or the mind body connection, which I do believe in. I know stress makes my symptoms WORSE and I try to do everything I can do reduce it. However, to say that many of my "abnormalities" are not abnormalities and that I probably don't have lyme disease just made me want to cry. Can emotions cause you to have so much inflammation in your body? Can emotions can your knee to swell and you to have such severe bone pain you cannot walk? Can emotions cause you to have skyrocketing thyroid antibodies? Can emotions cause my sensitvity to light and my extreme sensitivity to cold, among many other symptoms??? I think not. Clearly, perhaps some of my drs used different optimal ranges for some tests, such as hormones, so they might have said that I had abnormal levels or not optimal levels, but many of my other tests clearly showed abnormalities!!!!

I know my dr meant well, as he is a very kind man, but he left me feeling very upset and questioning everything. I did tell him that Lyme is a clinical diagnosis and that igenex has more positives because they report on bands other labs don't. I also posed this question to him..... "so, does this mean that if i had the power to heal myself that I should not take the antibiotics and just try to heal myself through my mind". He did not respond. The prior visit, when I told him I had lyme disease, he remarked to me "so, you think you found the answer to your problems and you are on the road to recovery". I thought he kinda said it with a bit of hesistation and I should've realized he did not think Lyme was the answer. Now, during this visit, his true feelings came out. It's almost as if he thinks the drs are trying to put a medical label on something that really is not a medical problem.

Anyway, so sorry for the length of this post. I just needed to vent.

Thanks for listening,
Nancy

 
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Old 10-01-2005, 08:53 AM   #2
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Re: upset- saw primary care dr- he's not sure lyme- thinks I have power to heal myself!!

Sick&confused ,

Wow! What a visit! First let me say I am sorry you are still feeling confused and mixed up. I know how confusing being sick and looking for answers and support can be.

Getting a diagnosis is healing in itself. To be actually able to know ....I am actually sick and it's not just in my head.

Your DR sounds very with it. I can't tell you how I had wished a DR would of explained the whole Mind, Body & Spirit illness to me. How many people have you meet that have said "I was in perfect physical health before I got sick" ? I have talked with many and then I have ask myself about the mind & spirit especially.

Did a thread before on how many people have been abused during childhood..either physically or emotionally and it was almost 100%. So I think your DR is right on the money with how things are suppressed sometimes in order to live and then they eat at us from the inside out.

I know you were probably looking for more answers when you went to the DR about what meds you should take.

I can tell you from my own PERSONAL experience that I had to take a break away from everyone and do some deep soul searching. I felt pressured in certain ways to do abx and I had to be 100% behind whatever treatments I decided to do.

Yoga has been life changing for myself. When I first started I was bedridden and my hubbie had to drive me there and pick me up. Had to push myself to lift my head at times. I can't tell you how much I have learned to breath and center my breath. I have also learned how to make time for me which is so very important.

I wasn't there with you on your visit but in my heart I feel your DR meant well. Maybe you can take sometime and reflect on things. Find the answers within yourself instead of looking for them else where.

~P

 
Old 10-01-2005, 10:22 AM   #3
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Re: upset- saw primary care dr- he's not sure lyme- thinks I have power to heal myself!!

p-

Thanks for your input. However, a couple things:
1) I was never abused in my childhood
2)Do you have Lyme Disease? If you do, I am very surprised that you would even write such an email. I am not saying that there is not a strong mind/body connection in physical illness. Obviously, stress and emotions make any illness worse, and they definitely can lower the immune syste. G-d knows, there have even been many links between emotions, immunity and cancer. (I am a public health graduate student/health education and have taken many classes in mind/body, etc etc) So, I am not disputing the mind body connection. I am simply saying that "looking within myself", which has been what I have been doing for the past years in therapy has gotten me nowhere in combatting the fact that I have a medical illness. It's just helped me cope with being sick all the time. I cannot do anything about my parents. They are who they are.

So, from your response..... it sounds like you doubt the validity of lyme disease or question it as a real medical condition.

BTW- I have tried yoga. It was very calming when I was able to do it, but many days, I cannot even walk well enough, let alone get into many different poses. I believe the body and mind have to be treated together, but to say, ignore the medical aspects of a disease and concentrate on the mind, i think is BS!!!, sorry!!

 
Old 10-01-2005, 07:11 PM   #4
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Re: upset- saw primary care dr- he's not sure lyme- thinks I have power to heal myself!!

Sick&confused

To answer your question yes I do have lyme disease and I also have babesia, bartonella,ehrlichia, and brucollis.

Without going into a detailed account of my medical history (you can look at prior posts for that), I can only say that my healing journey has not involved conventional medicines and I am feeling the best I have felt in years.

Now, I am not saying that the path I have chosen is meant for everyone, I can only say it has worked for me. I wish my Dr's would of been as open to none conventional treatments as yours sounds to be.

I am truly sorry if my post offended you in anyway. Maybe you can take the time to reread my prior post with keeping in mind that I had lost my quality of life also, in which time I had to step out of the box and look at different healing paths.

You have to 100% behind whatever treatment you decide on. I didn't have any luck looking for answers from other people. I had to look inside to find what was right for me. I had to look at why I had become sick to begin with. What was out of balance???

Yes your right...you can't change your family but how you react and respond to things that they do and say YOU do have control of. Same thing with stress, you can only lighten the load so much but how you respond to that stress can be life changing.

In regards to your last question about the validity of lyme disease, yes I do believe its a true medical condition. However, I do not believe it is the only thing causing us to feel the way we do. The answer is in treating the whole body NOT just the lyme.

Maintaining a dynamic equilibrium between the Mind, Body & Spirit is the key to well being.

Wishing you well in your healing journey!!
~P

 
Old 10-02-2005, 06:44 AM   #5
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Re: upset- saw primary care dr- he's not sure lyme- thinks I have power to heal myself!!

Dear sickandconfused,

This thread has bothered me all night. I know you are having a rough time with the "total" acceptance of this disease because their has been so much negativity of it not only from the medical community in general but in your personal life as well, you know family and friends.

GGB was not trying to say you were abused or that this is all in your head. She was just trying to tell you that for her personally it has been a soul searching journey and everybody must choose the direction they go in to fight this disease and "believe" they are doing the right thing.

If you read her past threads she will tell you that she went the traditional route and it didn't work for her personally. She drove about 10 hours out of state to see a lyme doctor and started traditional abx and had a horrendous reaction after 1 pill and had to stop. She has educated herself on different ways to approach this disease and has chosen the alternative method like a lot of others.

For her it was a matter of straightening her body out before even trying to kill the lyme. It has taken many months but like takemylife she is doing fabulous. Will this approach work for everybody? Probably not but who can say. Takemylife has gone one step further and is now trying to eliminate the disease via andrographis and samento besides the green caps he used to "free" his system up. So far GGB has not done this and may never have to. Or she may reach a point she feels she needs to. The point being she has been very open about this and when anybody writes in about good responses to natural methods she is there asking questions to further her knowledge in case it is needed down the road. None of us know what our immune systems are capable of be it good or bad. But we do know a healthy one is so important. To be honest with you I never thought much about my immune system until I was hit with this. We eat very healthy and I had always been athletic and never sick. I was still playing soccer in 90 degree plus weather at the age of 34 after having 4 kids. Nothing slowed me down. I am now 57 and feel 100.

Ticker has said many times that stress can bring out the dormant lyme and the way you are reacting to what everybody has to say is only going to hurt you. You need to decide on what's right for you and proceed. Give your approach time and if it isn't working try something else. I will say that GGB's daughter was in a carwreck a few weeks ago and I worried she would backslide from the stress. She hasn't. This has to validate for her that she is doing what's right for her. I personally have gotten so much better about stress but know I will stress out sometimes. Not good!

I will say that every one of us is ready to jump ship and switch whenever a good result comes along for somebody else. That is only natural. We are especially intrigued when it doesn't involve long term meds. There isn't one person on here who wouldn't admit that they wish they could have the results GGB and takemylife are having with no meds involved.

GGB and laurie have been the "detox queens" and very patient explaining to every newbie how to do this. I for one am so impressed that GGB can go to the health club and climb the rock wall 4 times. I can't even walk across the parking lot to open the door to the health club. Do I wish I could beat this with my mind and spirit. You betcha!!!!

I think the most productive thing you can do for yourself is go forth with what you have decided on and don't let anybody else "confuse" you with their words or you will be "sickandconfused" for a very long time. I know for a long time my husband has been freaking out over my mobility problem getting worse and that is why we are driving the 10 hours to Missouri this month to see an LLMD. I want confirmation. When my husband remarks about the walking I used to say that if I had polio he wouldn't be asking. He doesn't say much anymore about the problem. He just worries and that isn't good for him.

I would suggest you do combine all the detox methods you can so you don't clog your system with die-off which I think is a huge problem like takemylife says. You will get better one day but not if you continue to stress over it. Take what everybody has to say and form your own opinions. We are not all alike, we probably have numerous strains of lyme we are dealing with and as we have said before, there is not a one size fits all cure. We come here for support and knowlege for a reason. None of us are referring to the CDC medical book like so many doctors, we are relating to out own personal journeys with this disease and try to further the knowledge. Take this knowledge and put it to good use, don't take it personally.

BDFM

 
Old 10-02-2005, 07:58 AM   #6
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Re: upset- saw primary care dr- he's not sure lyme- thinks I have power to heal myself!!

thank you BDFM and all.

Talk about being upset about a post!!! I feel I have to say something...... GG's post mentioned that I am "listening to others" rather than listening to myself........well, I want to say that I am just beginning on this journey with Lyme Disease (or shall I say, learning that I have Lyme Disease). From what I have been told by many on this board as well as from people in my support group here at home, confusion is VERY normal in the beginning, especially because many drs don't believe in chronic lyme and you hear many different things from different people, so as far as listening to myself versus listening to other people, at this point I am trying to learn enough about the disease and my treatment options, including alternative, stress-reduction, etc etc, so I can decide what is best for me. I will NEVER let anyone TELL me what I should do, I am simply trying to get a sense of how others are handling their situations and trying to see what the best route would be for me. I know plently of people from this board and my support group that HAVE chosen to go the Abx route and are doing great after being sick for so long. Doesn't mean that is what I will do indefinitely or that it works for everyone.

AS far as stress bringing out symptoms, I am well aware of the effects stress has on the body, mind, immune system. I am a graduate student in public health/health education and we study all aspects of what influences health. I do not deny stress and try to manage it as best as I can, which i think is damn well considering all the stresses I live with each day, including severe financial problems due to being out of work, lack of family support, crippling pain, etc etc. I am totally open to more alternatiive approaches, mind body therapy, etc etc. I believe the mind and body must be healed together.

I would actually like to learn more about the approaches GG and Laurie have been using. I am sorry if my post offended you BDFM, or if my screen name does too for that matter!! I feel comforted by the many responses I did receive on another board stating how normal it was to feel confused in the beginning. Believe me, once I am aware of all my options, I will "chart my own course of action!!! G-d knows, my determination and refusal to accept the conventional drs telling me to just take antidepresants and pain meds for the rest of my life is what brought me to finding out about the underlying medical causes of my symptoms in the first place, rather than just accepting a diagnosis of chronic fatigue syndrome and being told there is nothing they could do for me and I would live a life filled with pain and fatigue. I WILL NOT accept that!!!!!!

So, if GG and Laurie can post or direct me to the post where they explain exactly what they have done to get better, I will certainly look at it. At this point, I am trying to find the best path for me. As for listening to other people and letting drs influence me, yes, it is hard not to since they have been doubting me for years and years. For now, I am doing the antibiotics and see how I do with them. At the same time, I am looking into mind-body therapy, detox, etc etc. In fact, if you are at the support group I attend, you would see that I asked many questions about those issues and that I don't believe antibiotics alone will be the answer. I DO NOT think Lyme is the answer to every life problem I have ever had. Does it explain many of my bizarre physical symptoms over the years, YES, absolutely!!! Do I have stuff I have to work out that may be working the lyme worse, YES, absolutely- who the heck doesn't??? I also want to say, I do not think there are magic pills for anything and I am glad, GG, that my dr to open to mind/body approaches as I strongly believe in them. I just did not appreciate him insinuating that my problems are stemming from unresolved issues with my parents, nor did I appreciate him advocating solely psychological means to solve my medical problems. I need to approach my lyme from all aspects, medical, psychological, spiritual, etc.

I appreciate all your responses to my post, but at the same time, feel like I am being attacked for being confused as I am just beginning on this journey. I am sorry if I misconstrued this. I am not sure I am going to continue to post, as things can often get misconstrued in writing and I cannot afford to feel like I am being attacked in any way.

I wish you all best of luck in your recovery. Again, if you;d like to point me to the post that describes exactly what you are doing on your "non abx" route to getting better, I'd be glad to read it.

-Nancy

 
Old 10-02-2005, 08:23 AM   #7
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Re: upset- saw primary care dr- he's not sure lyme- thinks I have power to heal myself!!

Good morning Nancy and all..

Have to make this short as about to leave house...

I just want to encourage you to keep posting here... I say that in reference to you stating that you felt attacked for being confused... what a yucky feeling...

I do have a lot of trouble with doctors in general, still... putting them on pedestals, being very intimadated by what they say, etc. So it is quite different for me when a doctor, or for that matter, anyone in the medical prof. raises an eyebrow as to what I'm doing to fight lyme... so with that said, I totally empathize with experience. I long for the day that I can better take into account what med. professionals say, use what is helpful and discard the rest without it being so toxic... my problem for sure and one I am working on... actually comes from abuse issues Some people in power still easily intimidate me... weird, because I have to work on not being intimidating myself...

My question to you... who is currently treating you for lyme? If it is not the doc you just saw, until you feel stronger in the 'current healing path' you've chosen, you might try not sharing a lot with other health care professionals... at least till you are stronger, more informed, more solid on what you are doing, or ready to take another path... in the beginning it IS confusing, scary, and full of uncertainty... more than later down the road...

so for ME, I am very selective whom I discuss my treatment with, or atleast to what extent... the other suggestion is how you will 'prepare' yourself for such responses... you'll get stronger and wiser and different places in the healing process, others opinions will mean different things to you...

I do know when someone seems to be saying something to ADD to my current health situation or UNDERMINE what I'm doing...

If it isn't said in love, no matter how much truth is shared, it feels crappy and disarming... that is what I sense you felt with doc... he may have been full of wisdom but did he stop to preface, 'Nancy... may I say to you that I care about you and what I see is that ....' for example. Something to let you know that he was to say some things that were totally foreign, unfamiliar to what you were currently doing, and a 'heads up'... this is said in love... as a caring professional...

my two cents... gotta go. Do encourage you to do what you must to find peace in your journey while investigating options... cj

 
Old 10-02-2005, 08:29 AM   #8
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Re: upset- saw primary care dr- he's not sure lyme- thinks I have power to heal myself!!

Nancy...I just want to say that I understand where you are coming from, as I'm sure everyone else on this board does as well. We have all been there a time or 2, doubting, angry, defensive, frustrated, and overwhelmed. It's a natural part of our disease and we all understand that. We are all here to learn and support one another. Of all the posts I have read from all on this board, they have all been open and informative and honest. I truly believe that neither GGB or BDFM meant anything at all other than to help you and offer their opinon. I know for myself that sometimes when I am on edge and worried it is easy to misunderstand, especially in writing. I sincerely hopee that you will take a deep breath and see that we are all here to help each other and put info out there that is working for us in hopes that it will help someone else down the road. No one is passing judgment or criticism, we are all on our own path and trying to find our way out of this jungle of lymes. It's normal to have anger and stress and confusion regarding our disease, it wreaks havoc in all areas of our life. No one is attacking you for feeling these, but no one can keep you from feeling that you are under attack or not wanted if you truly don't believe it. I believe that is one important step in life, especially dealing with a chronic illness such as we have...positive thought. Everyday I try to reaffirm over and over in my mind that; "I'm getting better.", "I feel strong and healthy.", "I'm unique and loved.". There are days when I feel far from all of that but I repeat it none the less and try to dig deep and believe it somewhere in my mind. I believe that that's where our healing has to start, in the mind. I truly hope that you can find a sense of calm and peace and find a path that will be healing to you, whether on this board or not. Good luck to you.

Shanna
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"Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12

 
Old 10-02-2005, 12:17 PM   #9
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Re: upset- saw primary care dr- he's not sure lyme- thinks I have power to heal myself!!

its normal to fell confused or even doubt ur dx. i have had lymes for 17 yrs. like u i was dx with cfs first and than suggested to the dr to do lyme test. it came back highly positive. i have been to 6 other drs over the yrs and they all say lymes. after treatment with abx i did good for 7 yrs and than it came back. im on ivs now for 4 months and see a slight improvement. however i some times still doubt the lymes dx even though its positive even by cdc standrads. i sometimes think do i have something else going on with the lymes. so it is normal to feel this way. people here are just trying to help even though u feel some are attacting you. they are just trying to give you differant options. find out all you can and than go from there. good luck

 
Old 10-02-2005, 04:43 PM   #10
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Re: upset- saw primary care dr- he's not sure lyme- thinks I have power to heal myself!!

Dear Nancy,

As everybody said nobody is trying to attack you. Myself included. Like you we were all newbies at one time and asked tons of questions. What I meant about your personal life had nothing to do with the past but the present. I know your family is giving you a hard time about the lyme diagnosis and that isn't right. It keeps you from making a clear decision on your treatment and following thru with it whenever anybody says anything negative to you. You can't always be second guessing yourself, you must go with your gut and just ignore what you don't want to hear that isn't productive to getting better. If you go back and look at your posts there will be one in which I said you sound so like me a year ago. If I can say that then how can I be offended by you or your name? Take a stand for yourself and for better or for worse choose a path and follow it and hope you get some good guidance along the way. That is the only way you will heal. The only people who really know how you feel are the ones who are going thru it themselves. So I would tell you to continue to visit this site and ask all the questions you want and those people will answer.

Maureen

 
Old 10-02-2005, 05:04 PM   #11
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Re: upset- saw primary care dr- he's not sure lyme- thinks I have power to heal myself!!

Hi Nancy,

I agree with everyone else, I don't see anyone attacking you. Everyone is trying to help you!

Okay, correct me if I am wrong, I see your situation like this: You may be having a difficult time "accepting" that you have Lyme Disease. If and I wrote "if" this is the case, well....... that's okay!!

Let me tell you a story (ut oh!)!

I am a recovering alcoholic since 1984, when I was drinking everyone was trying to tell me that I am an alcoholic and I should get help. Well, I could simply not accept that.

Me, an alcoholic? Nooooooooo way Denise! Not me. So the years went on and I got sicker and sicker from drinking. Yep, alcoholism is a disease too.

I started getting into trouble with the police, with my friends, "trouble" became my middle name.

One hangover morning I woke up and I said to myself "Denise, this is nuts, you are sick and you are a freakin alcoholic"..... Whoa, I finally "accepted" that I had a problem. Once the "acceptance" came, then I got the help I needed, and I have been sober ever since. Knock on wood, hey, knock on the computer!

So I believe the key to any disease is called "acceptance". Once we accept then we can move forward and do what we have to do. I went to a hospital to get detoxed and then I chose to go to a "house" for 3 months to ensure that I was going to get better, I had to choose my way of recovery. Some people who recover never go to a hospital or get counseling. Everyone is different.

So I think what everyone is trying to say (myself included), is "accept it" and then "chose" a path for your healing and recovery. Everyone choses a different path which is great! If everyone chose the same path, this would be a very boring Site!!

What would we learn if we all chose the same path? Nadda!!

So pick a path of your choice and follow the yellow brick road. If that path curves and twists and doesn't work for you, you can pick a different brick road as we have all done that.

I hope I made some sense here,
Denise

 
Old 10-02-2005, 06:10 PM   #12
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Re: upset- saw primary care dr- he's not sure lyme- thinks I have power to heal myself!!

Dear S&C:

I joined the board a year and a half ago, but started participating in earnest only 3 months ago. My brain was not functioning and could not participate before that time. Talk about confused. Exhausted. There is one thread you may be interested in reading on this board: "Lyme and Mental Illness". As we all know, Lyme affects us in many ways. We tend to think that mental illness is off in its own little compartment separate from everything else. But we are an integrated whole person, one miraculous functioning machine, a magical chemical mix with each part dependent on each and every other. Lyme affects just about everything. Period. I came to a point where I knew I needed . . . something. I was on a path that lead me to a therapist, and within a few minutes of being there, I knew I was supposed to be there, I felt safe, and I trusted this person. She is fabulous! She insisted on antidepressant medication, and I resisted for about 5 months. But I gave it a chance, and surprises of all surprises, it has helped. No it's not the magic bullet, the be all and the end all. But it has helped a part of me to function better again, not 100%, but better. I can think better, process better, reason better. I have my days still of complete fog, especially when life is more stressul. But, it has been one of the most important tools I've had in beginning to start working on this lil mystery of what is going on with me. Again, this is my story, my journey, and with telling it, I hope it helps somebody else. If someone offers or suggests medication, it is because they see an upset and distressed person, and know this is a tool that can help them. You are down, you are on the ground, someone is offering you a hand. To help you begin to get back on your feet. Simple as that. I can say this in hindsight. Hindsight is 20/20 ; ) .

Speaking of tools, I have learned also about journalling. I have always resisted doing this. But it helps me tremendously to get my feelings and thoughts down. Just blow it out. It's a process, and many times leads to answers I didn't know I had.

I am also trying to look at my life at the age of 50 more as one that is half-full, rather than half-empty. Life is too short, and getting shorter by the minute. In spite of my challenges, which are minor in comparison to what others face. I want to be lifted up. I want to move towards the positive. Look up to those who inspire me. Lance Armstrong. And last night I saw Larry King interviewing Mattie Stepanek's mother. Mattie Stepanek - what an inspiration ! ! ! !

This is a fantastic support board. It is another tool. It has been extremely helpful for me to keep taking the little steps I take, trying this, trying that. Questioning. Learning. There's a wealth of information. And many many people willing to share their stories, their successes. Take what you need, and leave the rest. Your answers will come to you in bits and pieces, stops and starts. It's hard work, but it's worth it.

And to address something in the subject of your original post, I do believe we have the power to heal ourselves. It depends on how you choose to look at it. . . how you interpret 'power' and 'heal'. This is your body, your journey. Your responsibility. The choices you make are up to you. You have the power to take responsibility for what path(s) you will take. Once I 'got' that, it was so freeing to me.

Okay, I hope this is helpful as well.

CS

 
Old 10-02-2005, 06:23 PM   #13
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sickandconfused HB User
Re: upset- saw primary care dr- he's not sure lyme- thinks I have power to heal myself!!

Thank you all for your kind responses. I am sorry if I misconstrued anything. As for as acceptance, if anything, my problem with acceptance lies in confusion and some doubts rather than a denial. Believe me, as crazy as this sounds, I WANT to believe that I have Lyme Disease!!! Believe me, after a diagnosis of chronic fatigue syndrome and thousands of drs telling me "chronic fatigue syndrome is a bunch of BS" and that there is no treatment, a diagnosis of Lyme Disease is actually comforting and reassuring to me since it is more recognized. I find that many people on the boards and people I have met attribute every symptom they have to Lyme Disease. There is no way for me to know if all my symptoms are Lyme. Some might be stemming from something else, some might be from stress, I openly admit that, who doesn't have stresss?? I WANT very much to accept that I have Lyme, but don't want to accept something that I do not have 100% certainly about- I would say I have 90% certainty I have lyme and the other 10% is missing due to the idiot drs that deny its existence, and with time, I will gain more knowledge, grow stronger and have less doubts about the diagnosis. I think I would have more of a problem accepting that I DID NOT have Lyme Disease and was stuck again with the label of chronic fatigue syndrome, which basically got me nowhere for 10 years. So, I if I am having trouble accepting it, it is more so because I am afraid to accept it, get my hopes up about getting treatment and regaining my life, and then find out if was the wrong diagnosis and I don't have lyme at all. Someone mentioned here, can't remember name, that she was dx'd with chronic fatigue syndrome for like 10 years and now lyme, but hasn't seen much improvement so she sometimes questions it. That is what I am afraid of. I am afraid of going on antibiotics or the natural route or whatever I think might get me better, combined with mind-body approaches and not get better and then I will have to question "do i really have lyme or is it something else or is the Lyme just not responding to treatment". My whole life has been an enigma in which I have been searching for the cause of my medical problems (and working on my mind/spirit) at the same time. Since lyme is a clinical diagnosis, there is no absolute way of knowing I had it. Only proof would be if I responded to some type of treatment, so that will be the only way I will truly know. I did have a positive western blot, but that was from igenex and it would not be considered positive by any of my other drs except my LLMD. So, what I am saying is that I am glad to have found the most probable cause of the majority of my medical problems- Lyme Disease makes the most sense, but I accept the diagnosis with reserve, meaning I am going to try everything in my power to get better, working on my body and mind, but also keep in mind that there could be a slight possibility that Lyme is not the answer and that I might have to keep searching. Hope this makes sense.


-Nancy

 
Old 10-02-2005, 06:46 PM   #14
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sickandconfused HB User
Re: upset- saw primary care dr- he's not sure lyme- thinks I have power to heal myself!!

CS-

I didn't see your post before I posted mine. Thanks for the insight. Actually, when I went to my LLMD, he did not think I was clinically depressed, just anxious about my symptoms and confused, which he said was normal and that I am handling things quite well. I already see a psychiatrist with 20 years of experience and he does not feel I have clinical depression, but mood swings and definitely anxiety. I am on antianxiety medication. I have tried almost every antidepressant around to regulate my mood and ease my anxiety- they did nothing for my mood, made me worse physically and i gained 30 pounds in the process. As for the power to heal ourselves, maybe I misrepresented what I wanted to get across. I do believe that the only way you will heal is if you are determined and you can only rely on yourself and no doctor, I do not believe in magic pills or a magic treatment. I merely meant that for all my physical problems, including a horrible immune system and autoimmune disease, that I will need other things beside my mind to heal me. As I said, been in therapy for a long time to work out some interpersonal and family issues and have grown emotionally stronger than I have been, but my medical problems have gone down hill, so it is not like I have been trying to deal with my emotional issues that are compounding my medical problems. As i said, I have made great strides in that area. Unfortunately, my body is not following suit. So, when I said I cannot heal myself, I merely meant that I cannot heal Lyme with my mind. All I can do is lessen my stress and handle my anxiety so it doesn't worsen my symptoms. For those of you that can heal yourselves without any medications or supplements, but merely through psychotherapy or other spiritual avenues, I applaud you highly (and am jealous of you!!). For me, this hasn't been the answer and my immune system is so depleted, I need the help of meds/supplements, along with continuing to work on myself mentally and spiritually!!

-Nancy

 
Old 10-02-2005, 07:20 PM   #15
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Join Date: Aug 2004
Location: Long Island, USA
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deejavu HB User
Re: upset- saw primary care dr- he's not sure lyme- thinks I have power to heal myself!!

Quote:
Originally Posted by sickandconfused
As for as acceptance, if anything, my problem with acceptance lies in confusion and some doubts rather than a denial. Believe me, as crazy as this sounds, I WANT to believe that I have Lyme Disease!!! I WANT very much to accept that I have Lyme, but don't want to accept something that I do not have 100% certainly about- I would say I have 90% certainty I have lyme and the other 10% is missing due to the idiot drs that deny its existence, and with time, I will gain more knowledge, grow stronger and have less doubts about the diagnosis. I think I would have more of a problem accepting that I DID NOT have Lyme Disease and was stuck again with the label of chronic fatigue syndrome, which basically got me nowhere for 10 years. So, I if I am having trouble accepting it, it is more so because I am afraid to accept it, get my hopes up about getting treatment and regaining my life, and then find out if was the wrong diagnosis and I don't have lyme at all.

Hi again Nancy,

I really feel for you, honest. I thought it was an acceptance problem as that is so normal, yes it is!

I look at it this way: What does one have to lose by taking the risk and following the Lyme Protocol to start getting better?

What does one have to lose by taking antibiotics? Okay, one may feel side effects that are not pleasant, one may throw up after taking 400 mg. of Doxycycline, but in the long run, how does one know if the medicine is working if they don't try it?

Life is all about risks, and if we don't take those risks, we will never find out. Life is a game of trial and error. We try one thing and if it works, great!

If not, then we try another method.

It's better than sitting or laying in bed all the time and doing nothing. I believe one must take action to find out where that road will lead us.

How does one find out if they do NOT have Lyme? Well, a good place to start is to try taking the medicine and finding out what happens. If you start feeling better, than you can say to yourself "wow, I am feeling better, so I do have Lyme!"

I also gained weight but it's a small price to pay for getting the use of my legs back again. So it's all an exchange. Nothing is perfect in life, no one is perfect, no medicine is perfect. But we have to keep trying because what is the alternative?

To "not" take action or take that risk is a waste of time. One does not get anywhere by "not" taking a risk. Forget the "label" of Lyme Disease. I hate labels personally.

Maybe if you view this disease differently, it may help. I can suggest that you can view it like this:

Hey, I have some bacteria in my body that is not doing me any good, so I think I will start on an antibiotic program and see if it helps. Because the bottom line is that we do have "bad" bacteria in our bodies and we must try to kill those bacteria's.

Well, that's all for now, I really hope you feel better,
Denise

Last edited by deejavu; 10-02-2005 at 07:25 PM.

 
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