Waynesrhythm: Best News Video on Lyme I Have Ever Seen

Discussion in 'Lyme Disease Archives' started by Prohealth~Moderator, Apr 20, 2009.

  1. Waynesrhythm
    4/19/09 7:04 PM Best News Video on Lyme I Have Ever Seen

    Hi All,

    I had a positive lab test for Lyme last fall, but have not done much to specifically treat it or address it. I have little inclincation to do long-term antibiotic therapy, but I haven't ruled it out. What has created an impasse for me is that I'm haltingly trying to better understand Lyme and possible treatments without having a lot of confidence in my cognitive abilities to do so.

    Tonight I came across a news segment on Lyme that may be a catalyst for me to get started on developing a game plan for myself. This video sorts out some of the information I've come across in bits and pieces and puts it in a more cohesive, comprehensible framework that I found quite helpful. I came across this video on the following website:

    http://lindaslymediseasejournal.blogspot.com/

    In the upper right hand side, there will be a link you can click on entitled: "Best News Video on Lyme I Have Ever Seen!" Once you click on it, it will open up in Windows Media Player. It's about 20 minutes long.

    I've thought a lot about my Lyme diagnosis since receiving it last fall. I currently believe that I have both CFIDS and Lyme, with Lyme probably being a significant contributing factor to my host of CFIDS symptoms. But who's to say what the reality is? I don't know, and I don't really care. I just want to be well, or at least get better. Perhaps it will happen once I start treating the Lyme.

    I'm posting this here in case others are finding themselves in a similar situation as mine; wanting to understand Lyme better, but not knowing where to start.

    Best to All, Wayne

    [This Message was Edited on 04/19/2009]



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    One Day Stronger
    3gs
    4/19/09 9:46 PM lyme

    thanks for posting this

    you sound alot where Im at inregards to lyme and what way to go-do



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    nofool
    4/19/09 10:39 PM CFS/Lyme

    Technically you can't have CFS and Lyme, since CFS is a diagnosis of exclusion. Also, CFS and Lyme don't have as much in common as some would like you to believe, Those with chronic Lyme have many more neuropsychiatric symptoms than CFS patients.

    Due to the heart problems and arthritis seen in chronic Lyme, it appears that few patients with CFS really have Lyme



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    Nanie46
    4/20/09 7:01 AM Waynesrhythm

    Hi,

    Thanks for posting that. I haven't watched it yet, but I will when I have time.

    I have lyme also and have been treating for 10 weeks. It will take months to get better considering it is a chronic infection I've had for 21 years.

    I think some of the most common misconceptions about lyme are that all lyme patients have arthritis and psychiatric symptoms.

    I do not have either one. I have muscle and soft tissue pain around my joints, but not arthritis.

    Others do have arthritis. I do not have depression, anxiety, bipolar disorder or any other psychiatric diagnosis, and others do.

    Everyone is different. My most prominent symptoms are muscle/soft tissue pain especially in my neck/shoulders and lower back, stiff neck, insomnia and fatigue....along with other symptoms.

    My daughter has lyme also. Her most prominent symptoms are fatigue, insomnia, migraines, trigeminal neuralgia and bladder problems like the frequent need to urinate.

    The possible symptoms of lyme are many. There is a good symptom checklist on p.9-11 of this paper by a lyme expert:

    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    there is another comprehensive symptom list in the back of this informative booklet:

    http://www.lymepa.org/Basics2007v1.2Rev.pdf

    The bacteria that causes lyme is called Borrelia burgdorferi. There are many strains of this bacteria.

    Depending on the path the bacteria takes, contributes to the particular symptoms a person develops. It does affect the central nervous system and then can affect any body system.

    Other common symptoms are tremors, muscle twitching, muscle jerking, numbness/tingling/pins and needles/stabbing pains/, interstitial cystitis, muscle weakness, being off-balance, forgetfulness, inability to find the right word or name for someting, digestive problems, sound or light sensitivity, headaches and many others.

    Borrelia burgdorferi does cause chronic fatigue syndromes and fibromyalgia syndromes. It is important to remember that syndromes are sets of symptoms. What caused the syndrome is the real question.

    Sometimes the cause is a virus, other bacteria, protozoan, or other agent. Somtimes the cause is a combination of agents.

    Borrelia burgdorferi also causes symptoms that look exactly like MS ( white plaques can be found in the brain with lyme too), Rheumatoid Arthritis (lyme was first identified after many children in Lyme, CT were diagnosed with RA, which was really lyme arthritis), Parkinson's disease, Lupus (lyme patients can have a positive ANA due to inflammatory processes), Alzheimers (many Alzheimer's brains have been studied and found to have Borrelia bacteria),
    psychiatric disorders such as bipolar disorder, depression and anxiety, Autism (there is definite evidence of a lyme-autism connection), ADHD ( borrelia can cause inattention, memory loss, drop in IQ, confusion, declining performance in school), ALS (Lou Gehrig's disease...borrelia can cause neurological and muscle damage leading to the inability to swallow..there have been cases of patients diagnosed with ALS and told they were terminal...then discovered they had lyme.....got treatment and recovered.)

    Were these people misdiagnosed? Of course, and it happens often.

    It is important to note that all of those illnesses above have "no known cause"...and therein lies the problem.

    A Dr decides a patient has one of those illnesses and then the cause of the illness is never addresed. Treatment is given that addresses symptoms only and will never allow the patient to really get well.

    Dr's also think they know how to rule out lyme, which is not true. 99% of Dr's no nothing about lyme disease.

    Anyone who has been told that they do not have lyme because their lyme test was "negative" should know that their Dr knows nothing about Lyme disease and how to recognize or diagnose it.

    I wish you well, Wayne. I hope you find the help you need.

    If I can help you in any way, please leave a post for me on the lyme board anytime.

    Lymenet.org is a great site to find a Lyme literate MD. Go to lymenet.org....click on flash discussion....click on Seeking a Doctor....sign up for free like you did here....post someting like this..."Need a LLMD in Maryland"...or whatever state you are in...you will recieve a private message with LLMD names, since the names are private and not published.

    They also have a fantastic Medical Questions board where you can ask questions, post your symptoms or lab results or anything. There are many intelligent people there with alot of experience.

    Some of them use naturopaths, so if you want info about that, they could be of some help too.

    All the best to you, Wayne.




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    MIssAutumn
    4/20/09 11:55 AM Wayne

    Thanks for posting this.
    With the blood tests Dr. Farr had me do I was also diagnosed last Fall with chronic Lyme- 20 years and EBV, also CFS. What he did first was get my immune system and gut back into a healthy state, otherwise nothing will help. Cateyes/Karen has done in depth posting on this,
    And antibiotics can only make it worse. A few people I have talked with have cured their Lyme by working on the digestive tract which in turn strengthens the immune system. we're also in the next go round will be do the heavy metal detox, can't wait for that since a lot of what I have will have the same symptoms nd damage as FM/CF.
    A lot of people will say you can't "cure" Lyme after a certain time ...don't listen to them

    I'm going to check out the video now and thanks again

    Sarah



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    mrdad
    4/20/09 12:12 PM Hi Wayne,

    I wish you to know that a friend of mine just emailed me concerning your recent post here
    regarding your Lyme. I too was diagnosed with Lyme, by Igenex Lab in Palo Alto about a yr.
    ago! Have you done that test thru them? I live in SF, so just took a short drive down and
    did it in person at their Lab. I've suspected Lyme for years and finally have had it virtually
    confirmed to within a 70 per cent accuracy by the Lab. My Daughter has had the illness for
    about 13 yrs., but with early oral antibiotic intervention at the onset, evidently curtailed greatly
    the more possibly devastating effects. She functions well today, having the energy level to work and arrive recently at an M.A. degree! However, She yet has some "possible" residual
    problems related to the early Lyme diagnoses.

    I took the time to read your Bio Page b-4 replying to your Post. You appear to be readily
    intelligent and more than capable of wondering thru all the multiple possibilities awaiting
    any treatment(s). An educated approach via a Igenex Lab test is highly recommended if not already performed by them. It's "definition" is most highly regarded by most members of
    the Lyme community. You can find them "on line".

    I likewise have CFS that may or may not be attributable to Lyme, as I also have a genetic
    blood disorder with similar experiences. But MY personal belief is that CSF CAN BE a result
    of Lyme as well as many other disorders as well as a "disease" of it's own!

    My suggest Wayne, is that you bec. familiar with the Lyme board here as well as other
    one's available on the WEB. A membership in a "Lyme Support Group" can be very beneficial
    to knowledge of the subject . Suggest you see: Lymenet.com and lymediseaseassociation.org/
    referral. I'll check back later to see your reply. Hope you are having a good day my Friend!

    MRDAD


  2. mrdad

    mrdad New Member

    Just wondering how and why this message got transferred from the Fibro Forum to the
    Lyme Forum? Did you make the change, Michael, or did prohealth? Is there anything here
    that is considered inappropriate for display on ProHealth?

    "I'am Curious, but Yellow"
    Mrdad
  3. mrdad

    mrdad New Member

    Yea, I'm with you! I'm so tired of this stupid CFS controversy I could spit!!! Much of it is semantics. We know SO little about any of this, and I get tired of all these so called definitive
    pronouncements on the subject. I too have stayed away from the Board for long periods,
    weary of it ALL. There appear to be more questions than answers, so I think we should all
    approach things with an open mind in our joint quest to find answers. Especially for the younger
    members who have their whole lives ahead of them. They deserve to feel well and be contributing
    souls in this event we call LIFE.

    Thanks Kelly and Friends!
    MRDAD
    [This Message was Edited on 04/20/2009]
  4. Waynesrhythm

    Waynesrhythm Member

    Hi All,

    Thanks so much for your replies. It has felt very supportive as I try to deal with the disconcerting censorship that seems to be happening on this ProHealth board.

    Nanie, thanks for all the great information. I have been tested several times over the years because I have about 80%+ of the myriad symptoms of chronic Lyme. The tests always came back negative. I had heard they could be false negatives, but it wasn't until I discovered on the FM board how incredibly unreliable standard tests are that I had some alternative testing done last fall.

    My ND had the testing done through a lab out of River Falls, WI called Neuroscience, Inc. He apparently had been using Igenix for testing, but chose Neuroscience because they had come out with some new Lyme testing that could also shed light on other co-factors going on in my system. Here’s a link in case you would want to check it out. Not much info there however.

    https://www.neurorelief.com/index.php?option=com_content&task=view&id=331

    After watching the news segment, I called to set up my first appointment with my ND since getting tested. I’ll be interested to see what I all tested positive for and what kind of regimen he has in mind. He mentioned last fall that he tries to treat it without resorting to antibiotics.

    MissAutumn, I agree with you that working on the immune system is paramount in addressing these Lyme/chronic infection issues. I followed with great interest Karen’s posts about working with Dr. Farr in trying to correct dysbiosis issues. I also agree with you that heavy metal detox is very important. I do clay foot baths to help in this department, but would love to get a far infrared sauna (FIR) to greatly assist with this detox. Doing the methylation supplements gives me confidence that I could probably handle the detox that would be initiated by the sauna therapy.

    MrDad, since I’m in Southern Oregon, it kind of feels like we’re neighbors in a way. The Neuroscience says very little about the testing I had done, but did have this very short description on their collection requirement page:

    Borrelia burgdorferi by Western Blot IgG, IgM

    Don’t really know what it means or whether it might be the same testing that you had at Igenix. So many things for me to start sorting out. You know, I really don’t question my intelligence to be able to do so, it’s just having the mental energy and focus to be able to allow my intelligence to have a go at it. Don’t know if that makes sense or not.

    My mental energy is so hard to come by, and when I finally try to do something, it feels like I’m in some kind of “mental sprint” to achieve any results until I sort of exhaust myself and then have to go back into recovery mode for various periods of time (hours, sometimes days). All very frustrating.

    Regarding your hoping I’m having a good day... Thanks for that. One thing I’ve found out about myself during this long ordeal with chronic energy/health issues is that I always seem to find a way to rise from the various depths I plumb, and continue to enjoy life. Focusing on gratitude for what I have instead of feeling dismay for what I don’t have usually does the trick for me. :)

    Kelly, nice to hear from you. Haven’t seen too many of your posts recently. Course, I don’t spend nearly so much time on these boards as I used to. I agree, it is nice to hear success stories of people recovering from Lyme. Apparently, even severe cognitive issues of long standing duration can be reversed with successfully treating these types of infections. I do continue to hope.

    Best to All, Wayne[This Message was Edited on 04/21/2009]
  5. mrdad

    mrdad New Member

    I just spent an whole damned 45 mins. responding to your Post then it wouldn't send!! I hit
    "Submit" and it just spun on to a clear, blank, white page with nothing on it. Don't know if the
    Problem is on ProHealth's end, or here. But I think NOT here! I just encourage you to read
    and listen to all that is happening both medically and "politically" with the subject of Lyme.

    Treatment options can be confusing and dependent on circumstance etc. I'll try to stay in touch
    with you as I can!

    Have a goodin'!
    MRDAD
  6. Nanie46

    Nanie46 Moderator

    Hi,

    I have had that happen to me to...spend alot of time writing a response and then it won't submit.

    I think it "times out" after a certain amount of time.

    This is what I do when that happens....

    I click on the arrow at the top of my screen to "go back" to the previous screen so I can see my attempted post again.....do not close this screen, just minimize it......then I open a new browser & go to the Prohealth site and find the post I wanted to respond to....sign in, if necessary and click reply.......

    then I go back and maximize the first Prohealth screen, so I can copy and paste my post into
    the other Prohealth screen that isn't timed out.

    This has worked for me....it's a pain, but it beats losing all that hard work.

    I hope my explanation makes sense....sometimes my lyme brain complicates matters.

  7. mrdad

    mrdad New Member

    Thanks so much Nanie. I did go back and find my "reply" again several times, again,
    as I hit "submit" it would not do it! You did very well in your explanation Kiddo! I'll try your
    "copy and paste" suggestion next time. Does it get one's fingers "sticky"? Or can I use a
    little brush when I paste?

    I'm gonna read your Bio Nanie so I can get to know better!

    Thanks again,
    MRDAD



    [This Message was Edited on 04/22/2009]