Tonight, my doctor called me around 11pm-- I went to his
office on Monday and they were trying to decide on a new course
of treatment for me and he was just now able to get back to me.
I've been having a couple of bad days, physically, and
emotionally, and I don't know how to help myself-- I feel like a
wreck, and I don't know what I can do.
I'm confused by how my psyche may be affecting my ability to
heal. My doctor said he doesn't think that more treatments will
benefit me b/c I have been sick for 9 years and haven't
responded well to much of anything thus far. He said that
patients who have this problem have suffered a trauma that
keeps them from getting well. I have explored this idea in the
past (when I first became ill), and couldn't figure out why I would
want/have a need to be sick. I have asked my doctors
periodically, if I could be creating my disease, and they keep
saying no. Even on Monday, I asked my doctor if this could be
psycho-somatic, and he said no, and now tonight he called and
in a hurried conversation said that they suspect I'm not
responding positively to the treatments they've tried, b/c of a
trauma.
Just the other day, I asked my mother, if she knew if anything
happened to me, that perhaps I suppressed. (and she said no) I
had a healthy upbringing, and feel fortunate that I cannot think
of anything traumatic that has happened to me.
I consulted an energetic healer several months ago, and she told
me I was cured, and that I had been cured by other healers more
than once, and that I allowed myself to become ill again. I asked
her why I would do that, and asked her how to keep that from
happening again. She told me to do something that she calls a
silly dance and repeat some mantras every day-- admittedly, I
haven't done this religiously, but not to discredit her abilities,
but when she started talking about herself in the third person
and using a fake Indian accent-- I was put off.
The principle is what I find disturbing-- can it be that I am
healed--- and I continue to feel all the symptoms of Lyme. Is it
true that you have to believe in a treatment for it to work?--
Shouldn't I feel a difference when undergoing a treatment even
if I don't believe in it?
Now I'm at a point where I've tried so many things, and I'm still
feeling lousy. I'm scared that it's all in my head.
I'm feeling uneasy about the fact that my doctor called me up
and said he thinks I need to reconcile some trauma, that I may
have never had. What if there really isn't any trauma-- How do I
help myself?
I've been calling my counselor for 2-3 weeks and she hasn't
returned my calls. I've been looking for someone new who
accepts Medicare, but that doesn't seem to be an ins. of choice
for therapists and psychiatrists. (I'm not sure that I want to see
a therapist who blows me off anyway).
I'm at a loss. I feel like I'm going out of my mind. I don't know
how to answer these types of questions.
Any thoughts?
Thank you,
Kado
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
First of all, just off the cuff, I'd say don't listen to what your doctor said about past trauma keeping you from getting well or that having this for 9 years will prevent healing. Many hear have been working on this for that long - or longer.
Some research indicates that this may be a condition to learn to manage, but, still many long-term patients do get better once they find the right treatment protocol.
Trauma, swaumma. Sure, trauma is and can be a serious matter. I've even tried to imagine what might have happened, but zippo - other than usual childhood tears. I even tried to drum up some sort of haunting at one point for a therapist who thought this was so severe it must be a possession. Then I got tested for lyme, which none of the doctors had even thought to mention.
Still, after that I still had one naturopathic give up after five years because he felt I "had not taken responsibility for how I chose this" for my path. Bottom line: he failed. I was perfect in all my self-care, etc. Tried to drum up the past lives he thought were the key . . . and it came back to the problem of my trying to deny the reality of the spirochete.
, I'd be rich if I had a nickel for every doctor that told me "well, WE'VE done all the tests or WE've done all WE can so 'it must be your fault"
"Must be some past trauma" is code for their being too lazy to really research &/or truly understand the dynamics and science of lyme and TBI, adrenal/endocrine matters, etc.
The science of lyme is a huge study. If you can get the DVDs of the last ILADS seminar that might be helpful. I think we need to know what it is, really understand it and then go back and revise a plan.
I hope you can find a doctor that is not a quiter and one that won't put blame on you or try to make you materialize trauma you say you don't sense.
Oh, also . . . I'd advise not to put a penny down on a counselor who is not thoroughly ILADS educated. For any doctor, naturopathic physician, acupuncturist, counselor or PT, it's one thing if they bring in another perspective or discipline, but FIRST THEY MUST KNOW ALL ABOUT LYME AND OTHER TBI.
It's nearing 11 pm and I must have light out of my eyes by then (it should be earlier, but, oh, well). So . . . I can't wrap this up other than say STOP. Listen yourself. What is your body saying?
With all the compassion and tenderness simply embrace yourself and another day you can start to figure out which step is first.
Listen and you may get a clue as to where to start or revise. Maybe you just need to be still for a little while. That in itself is a plan, while getting recharged.
This is what it is - quite real and neither easy nor fast to correct - yet have hope that healing, change, is possible at every stage.
I've learned, though, that the yippie-skippie approach just doesn't work for me. I felt such a loser for not getting well by visualizing it, etc. So, I just have to be more realistic and accept myself at this place, this point and do the best I can to take care of myself on all levels.
Just let yourself be for a little while. It's okay. Again, health is a process that has many avenues.
posted
Kado, people can say anything to us, but they have no proof of it being true.
These infections are physical - they infect our tissues, including our brains. It's infection, not trauma that's keeping us sick.
I think it's a totally false notion that we could have control over these infections if we only were to deal with our psyches. That kind of statement also gets them off the hook of looking at what the infections are doing.
In terms of treating, I think we're all different and need to keep trying things to see if we're going to respond or not.
Posts: 13171 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
kado, in my 4 years here, i've NEVER read of a LLMD CALLING PATIENT AT 11 PM !!!! **************************************
i DON'T believe all that HOG WASH you've been told.
you've been sick 9 years; me 38; and tutu around 50 years! tutu was able to get better and have QUALITY OF LIFE.
i'm NOT bedridden and haven't been except for 2 weeks after 1st being diagnosed with MONO. my quality of life isn't the greatest, but after reading this board; I'M THANKFUL EACH DAY FOR WHAT I DO HAVE! AND THAT I'M ABLE TO COME HERE TO SHARE/HELP OTHERS!
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
wish I had a dollar for every time a lyme patient -- including the hubby and me -- who was told that their disease was due to emotional issues, past trauma, etc.
it's a get-out-of-patient-care free card for lazy docs who are too dishonest, incompetent, or insecure to say "you need to find someone who knows more than I do about how to treat this illness"
yes, I do think emotions and state of mind have something to do with healing. No, I don't think they are the core cause of this disease or any other infectious disease.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
this is an infectious disease that is very difficult to test for and diagnose. you have to have faith that you have it. i dont believe you have to have faith in antibiotics
antibiotics work by a physical mechanism, and have nothing to do with emotions, trauma, or mental issues. I am sorry, but I think it is all a bunch of hogwash.
there are whole professions that I believe to also be a bunch of hogwash. if you look back in history, syphilis went through the same exact path. people infected were thought to have a mental disease, they were put in asylums and tortured.
i think eventually when medicine discovers a way to detect all physical diseases, psychiatry will slowly and quietly go away. unless they stick around and treat the symptoms of permanent damage to the brain caused by physical diseases.
Posts: 615 | From maryland | Registered: Oct 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Are you seeing a LLMD that is a member of ILADS?
All of the above posts are very good.
I was just lying here thinking how this thing affects my self esteem and confidence in myself.
Don't like that part of it. But, something tells me you know better too and am glad you posted here.
There is hope.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Wanted to add that I have noticed a direct relationship between my mental outlook and my physical well being.
I would wait until you are having a better day physically.
Keep breathing. Breath in Breath out.
this too shall pass
He called you at 11 pm on Friday night. Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I was diagnosed with Post Traumatic Stress Disorder.
I remember telling the ducks that I am anxious because I am sick
And not sick because I am anxious.
Do you honestly think that a positive Lyme disease WB could be attributed to
Your mindset on a particular day?
If I may gently suggest, your doctor has run out of options for treatment.
Instead of possibly consulting with other ILAD's physicians,
He took the easy way out of "blaming" you.
While I do believe there is a correlation between mental and physical healing,
There is no way I could contribute my Lyme and co-infections to Hurricane Katrina.
That is not to say that this particular event didn't jump start my illness.
However, it is not this event that has made me sick.
No wonder you are feeling so down and out.
Please look for another LLMD and get a second or even third opinion.
Could be that the magic cocktail that works for you just hasn't been tried yet.
I think that your doctor's response to your continued ill health is frightening.
Don't give up and don't give in to this type of negativity.
One of my friends has tried everything....doxy, mino, levaquin, septra ds, etc.
With no improvements noted.
Just started bicillan IM this past couple of weeks and is starting to finally see improvement.
Sending you positive thoughts and prayers and Angels to hold you
During this most difficult time.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
didnt read all the replies so sorry if I repeat anything.
I do believe that this disease causes PTSD. I know I have it.
I think mental health is important. I think you can have all the positive thoughts you want but if your sick you are sick.
Veterinarians do not call clients at 11pm. I find it odd you doc calls sick people at 11p.
Time for a new opinion.
good luck hang in there, melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
This is probably a stupid question and forgive me if it's already been asked (kinda scanned the replies this morning).
Have you ever been tested for co-infections and/or viruses?
If they've only been treating the Lyme, it's entirely possible there's another nasty bug that could be causing your problems.
-------------------- If you don't know where you are going, any road will take you there. - Lewis Carroll Posts: 356 | From Body-PA, Mind-elsewhere | Registered: Dec 2007
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Alv
Unregistered
posted
my dr also called me at 10pm -when I had a spasm on my left side of my body and told me to stop levaquin !
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posted
Hubby had a good neuro tell him "I believe your symptoms are all in your head, but they are not all in your head."
What he meant was that he knew hubby was sick and it was causing neurological symptoms that he couldn't explain. He did not think it was a psychiatric issue even though hubby had 3 psych admits.
Hubby has a few symptoms of M.S., some Parkinson's symptoms, some symptoms of Myasthenia Gravis etc. Lots of anxiety and depression in the past.
Hubby used to argue with the docs that the physical illness came first and then the anxiety and depression. They didn't listen.
As V.S the lyme patient and psychiatrist says -- Lyme is a brain infection.
Please look for another doc. If the doc has given up on you then he isn't helping you.
Where are you located? Post in Seeking a Doc section for help in finding a new doc.
Best wishes.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
There are physiological reasons people have treatment failure.
Have you tested recently for heavy metals?
There are also now genetic tests that look at polymorphisms in genes that make it diffult for some people to detoxify and process certain toxins. These tests help you know what toxins (including what medications) you should eliminate. It's possible you have been unknowingly poisoning yourself for 9 years.
The test I got is called the DetoxiGenomic profile through Genova labs.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Unfortunately, I still feel overwhelmed and distraught.
My LLMD is actually the president elect of ILADS.
I feel like with someone with such a good reputation, he must be right.
I feel so frustrated with myself-- It's a beautiful day, and I'm in
bed-- I keep thinking that maybe I'm not pushing myself hard
enough physically-- and I'm disappointed. I feel weak
physically and emotionally.
My parent's are outside doing yard work and cleaning the house, and all I feel like doing is staying in bed.
I've been so emotional lately-- yesterday, I got upset with two different people (who I have to see again), and I'm so embarrassed.
I can't tell anymore if I'm thinking clearly and if I'm afraid to be
around anyone, b/c I fear that I may say/feel the wrong thing.
It's important to me to take responsibility for my healing, and
now that my doctor thinks I won't heal until I reconcile a trauma
that I can't find-- I don't know what to do.
I'm certainly depressed and not feeling at my most positive right
now, and like I said before, I feel so tired and in so much pain
that I'm having trouble being positive.
Thanks again for all of your support.
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am going out on a limb here....not knocking your doctor, but maybe
It would be worth another opionion.
Not every doctor knows everything. Even our LLMD's....God Bless them.
Hang in there. Blaming yourself cannot promote healing either physical, emotional or mental.
We have enough negative outside energy.
Start with being kind to yourself. You do deserve it.
It isn't like you woke up one day and said....I am not going to respond to treatment.
Please know that I have often internalized other's reactions to me and/or my illness.
I like myself though. I really do.
That is not to say I haven't made mistakes or won't in the future.
I give myself the opportunity to learn from my mistakes and go forward.
My spirit continues to grow this way and so do I.
Hoping you allow yourself the opportunity to grow from this and move forward.
You are doing a fantastic job just hanging in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Just bc someone has status, doesn't mean they have all the answers for you, or they have reached the state of ego-less-ness.
That new age addage, "We are in control of creating our reality" is a *******ization of what I take to be ascribed to Buddhism? Which is not what the Buddha taught, but appears to be a mantra of a number of "successful" North Americans. I heard Barbra Streisand say on Oprah that after speaking with Deepak Chopra, she managed to "psych" the flowers in her garden to change from one colour (that she found offensive) to another that she loves. "You create your own reality" she said. These are people having trouble psychologically managing being priviledged. Britney Spears is handling the same issue, less successfully. Anthony Robbins has created an empire on our individual desires to believe that we can control what we can't. The nature of our lives is far more complex, and this simplicity is so dated! This is over 20 years ago! When I was at a Master Practitioner level of NLP (Anthony Robbin's gig)...I'm 20 years moved on now.
Time to try someone / something else. That will be you, "creating your own reality", or perhaps more accurately, "steering the boat as best you can".
While you're pondering why you just can't get it together by psyching yourself into it, ask yourself if all those people who have reoccurrence of Breast Cancer, brought it on themselves due to a lack of insight and awareness. We've all met people with exceptional insight and positive thinking who died in their 40's of Cancer.
At the very least, those of us unfortunate to aquire the chronic stage of Lyme are forced to aquire some maturity in our world view.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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I appreciate your response. I wish that I were that confident.
I'm still psyching myself out.
I spoke with my mother today (I live with my parents), and told her what the doc. said.
She too couldn't remember any trauma that had happened to me, but she alluded to the fact that maybe I was keeping myself sick.
I was just in the shower-- exhausted- I was sitting in the floor trying to shave my legs-- I got half of one done and found myself trying to do it with my eyes closed.
I don't understand why I would "keep" myself like this. It's a beautiful day, and there's a whole world that could be mine, if I could just get out of this **** bed.
I'm becoming depressed, and then I get angry at myself,
I don't want my mother (or father) or anyone to believe that I'm keeping myself ill.
I don't want to be a victim.
How can I rule out the idea that i'm keeping myself sick?
Thanks
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Kado,
From my own experience and doubts of years ago, I found out that If you ask someone if you are nuts, they will always then think you are, no matter who they are. Don't give your power away like that. In this day of really bad reality TV, it just seems that everyone is such a critic of others, with very little information.
You have to study up on infections and human physiology to understand it. And, even the best scientists admit there is so much they don't know.
-- - I assume you were tested for Cpn, HHV-6, etc in addition to the common tick-borne infections. Cpn is chlamydia pneumonia and HHV-6 is human herpes virus-6, common with CFS dx.
there may be some management clues in the CFS literature, too. The CFIDS CHRONICLE has had many good research articles that you can share with your parents. While many with CFS have been dx with lyme, treated and gotten better, not all. there are other infections or mechanisms that may be involved.
The CFIDS articles will give you a new respect for the human body as well as a healthy respect for invaders.
-- Also, I assume you had a full panel testing for porphyria - if you are chemically sensitive, this may be a link to finding the drugs that best work for you. A simple urine or blood test is not enough, though. Stool samples are required also to test for all the types.
THIS IS IMPORTANT: Symptoms of porphyria can be nearly identical to neurolyme. It has to do with the liver's ability to detox certain chemicals.
It could be that if you just can't process the medicines, that contributes to all this. There are ways to help that, though. Let me know if you want some links to porphyria information. It's far more complex than most doctors think, and most do not know much about it.
==
another possibility is gluten. I assume you've already been told that a trial of going gluten-free might really help decrease pain, brain-fog and increase energy. But, just in case that was left out somewhere along the line, you might give it a try.
=-
I think humans, but mostly American culture in the media swirl of "just think it and it will be yours" have become an arrogant breed, overall.
We have not learned about these microscopic creatures that also inhabit the earth and, therefore, make assumptions that are so far off base as to undermine us for a long time.
Ignoring the physical realities of microbic infections is like going driving, not paying attention to any of the other cars on the road or to pedestrians. Now, you wouldn't do that because you can see them.
Just because we can't see microbes does not mean they don't exist. And, just because they are there doesn't mean they have to hit us. We can learn how to avoid them or get them off the road, so to speak. That is where understanding our immune system. Few doctors really grasp this or the endocrine systems.
=
As practice, it might help in your speech to your self and others to drop the term "feel" and replace with "I am" or better yet, use the noun or verb and leave you out of it.
for instance, rather than say "I feel tired" or "I'm tired" state the fact: "the fatigue is just crushing" or "energy is better today"
Just the facts, not feelings unless you are in a therapy session or a heart-to-heart with a trusted friend.
Please get the DVD set from the LDA or ILADS. I think you would better understand the "traffic" around you. Share them with those in your life.
And, sometimes, we just can't see everything. Before fancy tests people had to trust themselves and believe others who were ailing.
Since all the fancy tests, if they fail or we don't have a test for something, patients are often dismissed. Don't take that.
Many adrenal matters and other endocrine functions can't be tested. We just don't know it all.
Take a vacation from this for an hour, a day, and just be kind to yourself. Then, I hope you can find a doctor who has treated the most complex of cases.
If I can think of one or two of the best articles, I'll come back and post those.
And, while lyme is not caused by emotional matters, clearly we are affected on all levels. If you can find an ILADS educated counselor it might be very nurturing to talk to someone about your feelings around all this and help you put your emotions and thoughts into some logical order.
Oh . . . you mentioned that you need to push harder. Uh . . . smarter, not harder is the key to success. Do not put beyond your common sense. Pace yourself, plan and prioritize.
Can you take cordyceps (a mushroom supplement)? I assume, though, that the LLMD you saw already suggested that. It's fabulous to help nourish the adrenals, lungs, and give a gentle support to energy. Avoid anything meant to "boost" as it may be too strong.
sorry for all these thoughts and no flow. Hope some of this helps. And, with all this homework that we all have, I try to "turn off the academic research" in the evening. Symptoms may still be present, but I work hard to think of other stuff, especially at bedtime. Ya gotta take break when you need one. It's not mamby-pamby, but wise management.
[ 26. April 2008, 04:20 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
This might be good to share with your parents. It can be overwhelming, so pace yourself and always break with a beauty or comedy break. Still "smell the roses" so to speak, when you can.
excerpt: As a result of having received continuous antibiotic treatment, I am the only one of the three [doctors] who is not yet so Lyme-disabled as to be forced into unwanted, premature retirement.
From:
Outcomes in Cases of Chronic Disseminated Lyme Disease for Three Infected Physicians, Described in Their Own Essays, Published in Peer Reviewed Journals
Virginia T. Sherr, MD 13th International Scientific Conference on Lyme Disease and Other Tick-Borne Disorders_Emphasis: Pediatrics & New Research_Hartford Marriott Farmington, CT 24--26 March 2000
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Kado,
I'm sure you've seen this. Because it has good information about the mechanics of lyme and TBI, it's a great article to share. I also never seem to have really read this, so each time I share it I learn something new.
Clinical Advisor Clinical Feature Issue Story From the May 2007 issue of Clinical Advisor (home page: www.clinicaladvisor.com )
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
***** As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
I've written down some of the suggestions that you've made, and I'm starting to put together a new plan.
The head-fog, blurred vision, fatigue, etc. are flaring right now, but
soon I'm hoping to put together a new regiment to help myself.
Again,
thank you to all of you-- I'm at a point where I don't have a therapist or psychiatrist and it's difficult to find people who not only understand,
but also have experience with these challenges.
Thank you all.
Kado
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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WildCondor
Unregistered
posted
What is the bizarre deal with a MD calling you at 11 pm? Are you in a different time zone? That's so unprofessional. Also, how dare he judge you and suggest trauma...don't buy into this &^&*^*&. Move on...he sounds like a cookoo bird!
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posted
How bad is THAT?? To blame a patient when they are not responding well to treatment? I was not responding to LOTS of treatment previously, NONE of which was my fault.
Just to be clear, I have heard that it takes 6 months to be able to decide if a drug/therapy etc., is working. Usually we are quick to want to say it's not working in a month or two.
You are not creating your illness, I wouldn't think. There is probably something else, a mycolpasma, a vitamin deficiency, etc., that has not been addressed.
Hang in there, I have been sick for 10 yrs, and I refuse to give up hope.
Bunny
-------------------- 4 strong winds that blow lonely, 7 seas that run high.
All those things that don't change Come what may. Posts: 103 | From Dallas/ Fort Worth. TX | Registered: Dec 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
There is no way your doctor can know that your condition is caused or exacerbated by a trauma. He can believe that is a possibility, but there is no way to know that for sure.
You have clearly thought this through and there is no trauma you know of, besides the trauma of becoming ill.
You did not answer my question about testing for heavy metals. Have you been tested? That could be your answer as to what is causing treatment failure.
The genetic testing is another test that could give an answer. These tests are new and many doctors do not yet know about them. My LLMD has started using them and finding many of her patients are on medications that they cannot process.
Your doctor has trauma. You don't think trauma. I just gave you 2 other possibilities. I'm sure there are more.
Great doctors are sometimes wrong. I would consider a second opinion with an LLMD that has a different approach. If this doctor does not use much alternative medicine, then I would find a doctor who does. Just to get a different view.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
My LLMD uses lots of herbs, supplements, home remedies, etc.
In fact, I think that it's b/c he looks at lots of possibilities that he mentioned trauma.
I have been sick for 9 years, and I have been tested for heavy metals as well as some genetic testing, and the results haven't shown anything that proved to be helpful. (I have however tested positive for HHV6, and negative for co-infections/other viruses)
I've had mega-doses of vitamin/mineral infusions, and I've been taking supplements a long time.
I've taken some of the nutrition deficiency tests, and my results showed that I was low mostly in Co Q 10-- however, I found that after taking large doses of supp.s and vit. IV's my nutritional levels were the same. I was told that these tests aren't very reliable.
I recently tried Glutathione, in case I was producing enough, but it did not help.
I've decided to try again to go off of Prednisone-- I've been on 10 mg for over two years now. I've tried to get off of it b/f, but the pain/withdrawal has been excruciating and I'd have to go back on.
My dr. hasn't been able to find a way for me to manage the pain, but I'm going to see if I can taper anyway and use Cortef to support my adrenals as I come down. (He has agreed to this)
I don't know what's worse- the side effects of Prednisone, or being bed ridden without it.
My dr. said he would try to help me to see a pain specialist, or see if the specialist can guide him in treating me, since the specialist doesn't take Medicare/Medicaid.
As a side note-- I've found it to be difficult to find specialist who accept medicare/aid--- esp. therapists and psychiatrists.
Thank you all.
Posts: 60 | From Barrington, RI | Registered: Oct 2003
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It was heartbreaking to read your story. Just because your dr is one of the best doesn't mean he is the best for you.
If you can stomach listening to my corny story about one of my kids it might help change your mindset a bit.
When my oldest was entering 1st grade many years ago every parent in the school told me that he just had to get Miss So and So for his teacher--she was just simply the best.
Any other teacher would be a disaster for him and his future would surely be ruined. (By 1st grade, can you believe it?---very serious parents at that school.)
Well, I begged for that "teacher of the year", he got that teacher and although she was a wonderful teacher, she was the worst possible teacher for my son---they just were a really bad match.
So we ended up a different teacher with the lesser reputation--in fact, she wasn't concerned about her reputation--she just wanted to help children.
It was the best thing that could have happened to our child. The new teacher that didn't have all the answers was always willing to try new approaches, just as your doctor should be.
So maybe the big name LLMD's are not for everybody. I myself am seeing a very kind, unassuming LLMD who looks at each person as a complete individual.
I don't believe a single patient in his practice has an identical treatment plan. He changes it along with our wacky symptomology on each visit.
Sometimes he is just as perplexed as I am as with what pops up ----like a recent body rash that appeared.
He quite honestly told me he had no idea what it was, but he gave me about 5 different options we could try.
These lyme bugs and their buddies are so intrusive physically and psychologically, it's no wonder you are feeling low.
But your dr should not be laying your problems back in your lap because that is not where they belong.
Leave your md on good terms---let him know you are going to try other options and then do it ASAP.
You might have to try out a few mds until you find the right fit, but there is so much new science out there every day, SO DO NOT GIVE UP!
I have several friends in my area with chronic lyme and we are all on wildly different treatments, so you just haven't hit on the right one.
Good Luck!!!
Posts: 345 | From East Coast | Registered: Apr 2008
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tailz
Unregistered
posted
I get so tired of hearing doctors blame patients for their own illnesses, telling them that they are either feigning illness for attention, imagining it, or have some subconscious need to remain ill.
Seriously - the only 'trauma' I suspect you are suppressing is a couple hundred of feet in height and likely beamed at your home.
I forgot to include in my previous post that I think I have shared most, if not all, of your feelings of frustration, depression and anger.
Before my Lyme diagnosis, I had been sick for so long and had no hope for feeling better.
I, too, worried from time to time if I was somehow making myself sick, since no one could find something wrong with me?
Now that I know I have Lyme, I've stopped blaming myself, but a day doesn't go by that I don't feel guilty for staying in bed so long and not getting anything done.
A very kind nurse in my doctor's office told me to stop beating myself up and just let my body rest when it wants to.
But it still is a downer when you get up and see that sink full of dirty dishes and those piles of laundry still sitting there.
I hate housework so much, but my number one fantasy now,(Sorry, Gerry Butler), is to have days and days of unending energy to clean and organize every inch of my house and my life!
Posts: 345 | From East Coast | Registered: Apr 2008
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Prednisone? Why is she taking a steroid as she's being treated for Lyme?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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bettyg
Unregistered
posted
great advise from everyone! hang in there.
Q..did you have STRONG self-esteem prior to lyme? in my youth - 35; i didn't have confidence in myself!
my friend recommended reading the book, I'M OK; YOU'RE OK! helped me tremendously. praying for you...
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Kado,
your last post stated " . . . (I have however tested positive for HHV6 . . ."
Well, that just might be the elephant in the room. Are you on a treatment plan for HHV-6 ?
That can be a very tough thing to treat and creates the same symptoms as lyme. Many CFS patients seem to carry that virus as well, and it is chronic. However, with treatment we all hope we can get ride of viruses. They do not generally respond to antibiotics. there are a couple anti-virals such as Valcyte and certain herbal supplements may be of some value (allicin, olive leaf extract, maybe andrographis).
A doctor at Stanford University is doing a current study on CFS and valcyte (or a cousin to it). I will see if I can find the link.
I think your doctor must have overlooked the importance of HHV-6. It is nothing to sneeze at.
you did not state if you were tested for Cpn (chlamydia pneumonia). that should definitely be ruled out at this point.
---------- also you state " . . . I've decided to try again to go off of Prednisone-- I've been on 10 mg for over two years now. . . ."
10 mg may sound like a small dose, but half that nearly did me in.
I appreciate your saying it helps with pain and you've tried being off of it. However, prednisone certainly can affect infections and your immune system and mood, etc. you might want to read what it says about steroid use in the ILADS treatment guidelines - www.ilads.org - whatever you decide, you are correct in not stopping suddenly.
Others may come along with help on that aspect and regarding Cortef. the post from Lyme ED above is very good advice.
I know when I took prednisone for short term many years ago, I became suicidally depressed. It was the worst drug I've ever taken. At the time I did not know, though, and tried it many times on and off. It nearly killed me and, I think, really made the lyme blossom - that's right around the time I tested positive. Again, expert care needed to taper off over time. that is vital to your safety.
---- In the area of pain management, if you are free of bartonella (you said you did not have any lyme co-infections), I assume you are taking magnesium in a fairly high dose as it's suggested in the ILADS treatment protocol.
If not, very good quality of magnesium glycinate or citrate often diminishes pain. An herb, corydalis, is very good for sleep and pain, too. It makes me sleepy, so night time use works well.
There's your ANSWER! My GOD! People with Lyme should NEVER take a steroid! All you are doing is allowing it to reproduce unchecked. Lose this Dr. before he kills you!
Bunny
-------------------- 4 strong winds that blow lonely, 7 seas that run high.
All those things that don't change Come what may. Posts: 103 | From Dallas/ Fort Worth. TX | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Kado,
I wonder if your LLMD had you on prednisone or if another doctor prescribed it.
Antibiotics and Steroids From: Lyme Disease 1991: Patient/Physician Perspectives from the U.S. and Canada - Lora Mermin, editor
by John Drulle, M.D.
"Corticosteroids, or steroids as they are commonly called, are very important drugs in a wide variety of medical conditions. They exert an anti-inflammatory effect and suppress the immune system. This may be life saving in some diseases such as asthma and malignancies.
On the other hand, steroids are rarely curative, and are associated with harmful side effects if used for prolonged periods of time. These include bone loss, cataracts, sodium retention, weight gain, abnormal fat distribution and predisposition in other infections. . . .
. . . We have seen literally dozens of patients with Lyme who were initially treated with steroids who reported a dramatic worsening rather than improvement as would be expected. Dr. Joseph Burrascano has coined the expression, ' Steroid Disasters, ' to describe these patients.
. . . "I [the author] have used steroids in Lyme patients, but only in very selected circumstances. In patients who have presented with eye involvement with rapidly deteriorating vision, such as optic neuritis or uveitis, the combination of high dose steroids appears to restore vision more rapidly than by using antibiotics alone. . . .
Prednisone (Patient Information sheet from Medline Plus)
EXCERPTS:
. . . Prednisone is in a class of medications called corticosteroids. . . . Do not take more or less of it or take it more often or for a longer period of time than prescribed by your doctor.
Before taking prednisone:
. . . you should know that prednisone may decrease your ability to fight infection and may prevent you from developing symptoms if you get an infection. . . .
Prednisone may cause side effects. Tell your doctor if any of these symptoms are severe or do not go away:
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