Is there a good book on Lyme Disease?

Discussion in 'Lyme Disease Archives' started by pepper, Oct 27, 2008.

  1. pepper

    pepper New Member

    I am new to this disease having suffered with Chronic Fatigue Syndrome for 16 years. I find this all so very confusing and was wondering if anyone had found a book that helps sort out diagnosis and treatment. My brain fog is so bad these days that reading online and remembering anything has become really difficult. Maybe if I had a book and could highlight important stuff, that would help.

    Are there good books out there?
    Thanks for any ideas.
    (((HUGS))) Pepper
  2. mrdad

    mrdad New Member

    So sorry you that you are not doing well. There are not that many books written on the subject
    but suggest that you go on line for your local Library. Likewise, there are some many good Posts on this forum. See the "search" line above and use it to type in info you are attempting
    to ascertain. Have you been tested for Lyme thru Igenex or another lab? Most of us with
    Lyme also have CFS as a possible result of the Lyme.

    Huggles,
    MRDAD
  3. lpn9999

    lpn9999 New Member

    A couple of good general books are "Coping with Lyme Disease" by Denise Lang and "Cure Unknown" by Pamela Weintraub.

    The movie "Under Our Skin" is also very good, and is shown by a lot of local support groups. You can also order a copy from their web site: www.underourskin.com.

    Lisa
  4. victoria

    victoria New Member

    (and tried to last night but this board had problems!)

    Also you might want to look at all the links bit by bit as to info sites about lyme in general, as well as the different types of protocols... it's a 'sticky' up at the top.

    Sadly this is a complicated and usually complex problem to deal with... but people can get better.

    good luck in your reading!
    Victoria
  5. pepper

    pepper New Member

    This is new to me, CFS as a result of Lyme. Does that mean that the CFS will go away if the Lyme gets better? See, I told you I was new to this! I am totally clueless and incredibly confused with all this new information.

    I have not been tested thru Igenex yet. My CFS doc gave me a clinical diagnosis of Lyme. He said that I could pay for the tests if I wanted but from my history and especially my reaction to IV ABX this past summer when I was hospitalized with septis, that there is no doubt in his mind that I have it.

    He has tried natural treatments on me but I have had bad reactions so I think that Igenex testing is next. But I can't get in to see him for another whole month so I am impatient and want to learn about it as much as my poor brain will let me.

    I am going to check the library for the books suggested below. I have learned a lot online but would like to see it all summarized in a neat tidy package. If such a thing even exists. Heck, I used to be a school librarian - I prefer books!

    (((HUGS)))Pepper

  6. pepper

    pepper New Member

    I have seen those books at Chapters online and will order one of them. I have seen the trailer for Under Our Skin but didn't know that I could order it. I will check that out.

    Thanks for your help.
    (((HUGS)))Pepper
  7. pepper

    pepper New Member

    I am glad that I am not the only one who finds this incredibly complicated! I thought it was my brain fog that was preventing this from being clear. I feel a bit better thinking that this really is more complex than "if you have this, then take that." That was what I was looking for. Maybe this disease just isn't like that at all. I have so much to learn.

    (((HUGS)))Pepper
  8. pepper

    pepper New Member

    I will check out Dr. B's treatment protocol. I didn't know that it was on ILADS. Boy, I have so much to learn. I did watch a DVD of a talk by Dr. B several years ago when I was toying with the idea of LD. I didn't really think I had it except perhaps mycoplasm and ehrlichia. But I am beginning to see that LD is a disease of many faces and my reaction to IV ABX made it pretty clear that is exactly what I have.

    I will see if Chapters has the Lyme Solution too.

    Thanks for your input, Kathy.
    (((HUGS))) Pepper
  9. mrdad

    mrdad New Member

    I'm glad that so many here have responded to your Post. In answer to your question, I assume
    that Chronic Fatigue is most likely a problem for all with Lyme Disease the extent of which
    may differ according to degree of illness or stage(s). I'd be interested to hear from any here
    who DO NOT experience fatigue with their Lyme illness? CSF can have an abundance of possible sources of concern. Viral as well as bacterial or psychological.

    I looked in my notes to find a few books today. Some of the info may be overlapping or
    dated, but useful.

    "Coping with Lyme Disease"
    "Everything You Need to Know about Lyme Disease"
    "Bull's Eye": Unraveling the Medical Mystery of Lyme Disease
    "Cure Unknown"
    "Lyme Disease" (Easily Understandable even 4-Me!) by Len Yannielli less than 100 pages

    Surprisingly, even at San Francisco Main Library, very few books are available or have
    been written. We have to remember that the more modern understanding of this disease
    is relatively NEW and although much is understood, much research continues and needs to
    be done. See if your Library (on line) has any of the books available. "Bull's Eye" is an in-
    teresting an informative narrative of the beginning modern look at this disease in American.

    I do hope this info will be helpful. Take care,
    Huggles,
    Mrdad
  10. pw7575

    pw7575 New Member

    Hi Pepper,

    I was just recently diagnosed with Lyme Disease and looked into some books as well. There were a few that were pretty well recommended. I bought two of them so far.

    I bought
    -The Lyme Disease Solution by Dr. Kenneth Singleton - Dr. Singleton is a doctor who actually came down with Lyme Disease himself. He went undiagnosed for almost 8 years before he finally found out he had Lyme. He is now recovered and treats Lyme patients. He has compiled a treatment that worked for him and seems to work well for his patients also. He talks about all this and the treatment in his book. I am currently reading this one and I do think it is a very good book so far.

    -Healing Lyme by Stephen Harrod Buhner - This is another popular Lyme book that many have read and followed treatment from. I haven't started reading this one yet.

    Take Care!
    Pam
  11. victoria

    victoria New Member

    Nope, don't feel bad, it's not 'you' at all. It's the nature of this whole disease complex that I prefer to call Lyme & co - the "co" meaning co-infections as it's more likely you'll have more than lyme, from other bacterial to viral to literally "bugs" like those in babesia (similar to malaria as same med, but not the same).

    Adding to that, is that once one's immune system is compromised, it can of course leave you open for other opportunistic infections that normally reside 'in check' in one's body like the herpes family (HHV6, shingles/herpes zoster, cytomegalovirus, mono, herpes simplex, etc).

    Often one's hormonal balances get unbalanced as well, be it thyroid, adrenals, etc....

    Not to overwhelm you (?) (hope not)... but one has to tackle things one or 2 at a time as they become apparent. Hopefully you'll be one of the lucky ones that can get rid of it or at least put it into remission quickly (depends on you as well as how long you've had it)...

    BTW, the trailers of Under our Skin can't be ordered, but can be viewed at youtube at the url above. You can order the DVD of it tho, I think it was around $30 for individuals.

    all the best,
    Victoria
  12. mrdad

    mrdad New Member

    Thank you for your input here. My suggestion was NOT that Lyme can be psychosomatic illness,
    but rather that Fatigue in itself may be caused by factors other than Lyme Disease. I'm not
    sure if all Lyme victims have CF? You may wish to enlighten me on the question. "Fatigue"
    is an ambiguous term I would think?Depression, for example may cause one to experience "Chronic Fatigue".

    Huggles,
    MrDad


    [This Message was Edited on 10/30/2008]
  13. mrdad

    mrdad New Member

    You're correct, as CFS is so difficult to quantify! Look at the "Yuppie Flu" folks at Lake

    Tahoe. CDC wasn't interested in even investigating the incident until it became highly

    visible and involved not just adults. Much like what occurred in Lyme Conn. It took per-

    sistant work by concerned victims to get the attention of investigative authorities.

    Have a restful weekend,
    Huggles,
    Mrdad
  14. pepper

    pepper New Member

    You have given me great resources and lots of information. I have had a few rough days and was so happy to get on here and see all the help you have given me.

    I am going to see what I can get online from the library and from Chapters. Thank you all so much for taking the time and energy to get me started on this.

    (((HUGS))) Pepper
  15. mrdad

    mrdad New Member

    I'm happy that you're here and that you are getting started on your search for info and answers.
    I'd just started that journey myself and have also appreciated the help of SO many on the Lyme
    Board! We will be learning and hopefully regaining are health together. There's a lot to know
    but I think I'm beginning to understand the "MACRO" overview of things. I'm just now directing
    myself to more specific(s) involved.

    "Just remember----we're in this together Kiddo!!
    Huggles,
    MRDAD
    [This Message was Edited on 11/01/2008]
  16. pepper

    pepper New Member

    We are all in this together and I sure am glad that I have you all for information and support.

    I have heard from two people near my home who were misdiagnosed and have been treated for Lyme. One was dx with MS for 12 years and has been on ABX for almost two years and has had remarkable improvement. The other was dx with FM for 15 yrs and was on ABX for three years. They are both so much better that I am excited to get started on treatment.

    Thanks again, MrDad
    (((HUGS)))Pepper
  17. mrdad

    mrdad New Member

    It's interesting that you recently experienced TWO people who are now doing well after

    years of "mis-diagnosis". This is becoming increasingly common. What protocol have these

    people been following? You may be in a good position to benefit from their experiences!

    I think you are getting off to a good start. Stay positive and optimistic!

    Huggles,
    MrDad
    P.S. I see from your Bio Pg. that you are in Ottawa. Have you gone to the
    Canadian Site CANLYME.Com (?)(?) I think it had been unavailable for awhile
    but seems to be back up on line.[This Message was Edited on 11/03/2008]
  18. munch1958

    munch1958 Member

    I'm an avid reader. My favorite Lyme book is:

    Healing Lyme: Natural Healing And Prevention of ... by Stephen Harrod Buhner

    PJ Langhoff's "It's All in Your Head Series" is also very good. I can't hardly wait for book 3 in the series to come out. It was supposed to be out in June 2008. Don't know what the hold up is tho. It's supposed to really shake things up in the Lyme world. Wish PJ would get it out there!

    Book 1: It's All In Your Head Series: Patient Stories From the Front Lines
    Book 2: It's All In Your Head Series: Around the World in 80 Lyme Patient Stories
    Book 3: It's All In Your Head Series: The Baker's Dozen and the Lunatic Fringe

    I have not read this one but hear it's good. There is a yearly update too:

    The Top 10 Lyme Disease Treatments: Defeat Lyme Disease with the Best of Conventional and Alternative Medicine by Bryan Rosner, Julie Byers, and Michael Huckleberry

    This one was excellent. Everything was explained quite well and I like how the author worked in her personal experiences. I'm a fan of Constance Beans other books on childbirth.

    Beating Lyme: Understanding and Treating This Complex and Often Misdiagnosed Disease by Constance A. Bean

    My DH will complain but I'm going to order these 3 books next:

    Chronic Lyme Disease - Ways to Outsmart a Smart Disease by Gigi Guthrie M.S.W.

    The Lyme Disease Survival Guide: Physical, Lifestyle, and Emotional Strategies for Healing
    by Connie Strasheim

    Disguised as the Devil: How Lyme Disease Created Witches and Changed History by M.M. Drymon

    Cure Unknown by Pamela Weintraub

    I thought this book was very readable. I didn't care for the way Pam tried to present both sides of the story but that's what science journalists try to do.

    The only time I want to read about what the IDSA criminals have to say is at their trials and subsequent sentancing. They have harmed a great number of people and violated their Hippocratic oath. If it wasn't for these 14 form the Idiot Society of America we would not be where we are today!

    There were some points that I personally didn't agree with. From talking to other activists I know many things and important people were left out of the book. It's supposed to be a comprehensive history of Lyme but without some key people I don't think it is. There are people who testified during the Lymerix vaccine hearings that didn't even warrant a mention in the book.

    Plus I didn't care for a page at the end where Pam tells about 2 women that she knows. One was involved with the LDA and the other was not. Both had the same set of symptoms and went to the same doctor. The non-LDA woman was not treated agressively while the LDA woman was treated differently because of her loyalty to the LDA. I'm for treatment for EVERYONE.

    The Widening Circle: A Lyme Disease Pioneer Tells Her Story by Polly Murray

    Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders by Karen Vanderhoof-Forschner

    The Lyme-Autism Connection: Unveiling the Shocking Link Between Lyme Disease and Childhood Developmental Disorders by Tami Duncan, Bryan Rosner, and Robert Bransfield

    The Experts of Lyme Disease: A Radio Journalist Visits The Front Lines Of The Lyme Wars by Sue Vogan, Warren Levin M.D., and Nancy Ng

    This book is about Lyme in the military...
    NCO: No Compassion Observed by Sue Vogan

    The Poison Plum by Les Roberts (fiction)

    This book is entertaining fiction with a nice twist at the end.

    I'd love to buy this one too and Dr Schaller's other books on Bartonella but they are kind of expensive!

    The Diagnosis and Treatment of Babesia by James Schaller

    Artemisinin, Artesunate, Artemisinic Acid and Other Derivatives of Artemisia Used for Malaria, Babesia and Cancer by James Schaller

    Bartonella: Diagnosis and Treatment by James Schaller, M.D.


  19. mrdad

    mrdad New Member

    Wow, you certainly have brought forth books that I've not encountered b-4! NONE of those

    books appear on Library Cat. of Main Branch of SF Public Library, one of the largest and

    best stocked on the West Coast. It could be that bec. this is an urban area, the subject of

    Lyme is yet in the "dark". From where, in general, have you been able to find such a list

    of informative books?

    Thanks and Huggles,
    MrDad
  20. pepper

    pepper New Member

    Yes, I have been to CanLyme but have a really hard time negotiating their site. I am used to this site and learning something new is difficult. But I am working on it. It does have a treasure trove of information.

    CanLyme is where I met one person who was dx with MS for 12 yrs and is now 75-80% better!!!! She has been on IV abx for a year after being on oral abx for 8 months. I am going to see the same doctor if my GP will refer me when I see him on Monday. I am so afraid that he will not. He is a moody guy and you just never know.

    I may ask for ideas on how to ask. I have already seen an Infectious Diseases doctor who sent my GP a letter saying that I am a "very healthy lady" and do not have Lyme Disease despite my CFS doctor's clinical dx.

    I have just spent three days mostly in bed eating cheese and crackers because I have no energy to shop or cook and I am "very healthy". He should live one day in my body.

    But I am afraid that my GP may value this guy's opinion.

    Thanks for your help as always.
    (((HUGS)))Pepper

    P.S. The other person who is doing so well is my cousin's wife. She had FM for 15 years although she knew that she had Lyme Disease and couldn't find anyone to treat her up here. She finally found a dr. about 3 or 4 yrs ago and after 3 yrs on IV then oral abx is living life normally. She says that she didn't feel this well when she was young!
    [This Message was Edited on 11/08/2008]