Getting better, so haven't been coming to this board recently

Discussion in 'Fibromyalgia Main Forum' started by Daisys, Nov 21, 2008.

  1. Daisys

    Daisys Member

    I started posting here in 2002, and this site helped me tremendously. I was already on the best diet, and taking most of the best supplements for my condition, when I found out I actually have lyme disease. Now, I'm getting the prescriptions that I've needed to fight this.

    I can't access my past posts to see if I posted about this before. Some of us were discussing the possibility of having lyme, and a lot found out they did. Now, I've been in treatment for a little over a year, and I'm getting well! My progress is astounding all my friends, and I'm thrilled!

    When I visit lyme forums, I see that many who have lyme originally were diagnosed with CFS/ME and FM, as was I. So, I feel it's important information for many who post here. I know that not all who have CFS/ME or FM have lyme, but many do, so I think it makes a lot of sense to look into it.

    Lyme disease can be cured. The biggest problem is that most doctors don't know how to test for it, the tests are inaccurate, and maybe the biggest problem: the insurance companies own a lot of the medical care business in this country and they don't want a new disease that needs more than 7 minutes of the doctor's time per visit.

    This message board helped me a lot, and I want to give back. My advice is to learn about lyme disease, it's symptoms, and the political situation surrounding it. It's actually the same with most newly discovered diseases--first denial, then finally funding, and help.

    The film "Under Our Skin" is hopefully getting thru the denial. But, for now, the ones who really know how to treat lyme are the doctors who have it themselves, or someone they love has it. They belong to a society that exchanges information as they learn--ILADS International Lyme and Associated Diseases Society. They are know as LLMDS, lyme literate doctors in all fields of practice.

    I'm so glad I found out what was behind the misery I dealt with for 30 years. I hope this information helps those who follow up, and find out they have a treatable disease, like I did.
  2. babyk902

    babyk902 New Member

    glad to hear you've been doing much better! congrats on that -- what were your symptoms exactly? and how did you get diagnosed with lyme since the tests are so unreliable? i have been under the assumption i may have lyme as well, as i have borrelia bacteria in me, however, my doctor claims this is "different" from lyme and is not qualified as actually having lyme, so i'm a little confused by that..

    do you have any side effects from the medication you've been on? and how much have you really progressed? i'd love to hear about your improvement.

  3. ladybugmandy

    ladybugmandy Member

    daisy....30 yrs? wow! i am so glad you are better.

    may i long were you on antibitiotics and how long do they think you will need them?

  4. 2sic2mooov

    2sic2mooov New Member

    I have been in bed for the past 2 weeks and researching a lot. Just came back to stick my foot in the door here again. Like most others, I spend half of my life pushing through this disease to just get through each day and survive...not live. The other half is spent asking a lot of why's and what can I do? I become complacent and just give in and live with the hand life has dealt me (and what docs have dealt me).
    In doing research online and going over my past medical test results....going through my past in my head and also discussing this with my husband and others....I TRULY believe I have a lyme infection. It just makes sense considering my symptoms began months before the killer flu that the docs all want to equate with the onset of the CFS. I completely "fit" the lyme picture. Grew up on a farm...hunted deer...lived in rural areas where Lyme was present...and had a rash after gardening in the rural yard where we lived. (rash was not bulls-eye, but was round). It never occured to me then to connect the dots bc I was very uninformed. My husband, son, and other family hunt deer big time. If I was not out with and tromping through the woods, I was out inspecting the deer that were always brought home. This is still the case.

    I am so frustrated and so scared that I will never get a doc to take this seriously. They did test for it initially because I became sick in early March but had been on vacation a few weeks before. They were testing for any bacteria present. They got a "borderline" test result and I was put on antibiotics for i THINK about 7-8 days. When the test results came back they decided to re-test. My result came back neg. I was tested again last year and again came back negative. BUT, now I look at my test results and do not understand the readings. The first test came back at 1.19. (anything over 1.20 was considered positive). The second test came back as 1.0. (I see in the old records now that anything from 1.0 to 1.20 was consider unequivical?...I think that means it is iffy.)The last test came back as .66---a definite negative. BUT now I see the testing range has changed in the past 7 years. NOW anything over a .75 is considered a positive lyme result. I need help in trying to decipher this. Because using the new standard of testing (OVER .75 is positive), means my initial 2 tests 7 years ago would NOW be considered a positive result.

    I have had so many strange things happen lately. Twitches and almost mini stroke-like symptoms. Got very ill after having a couple glasses of wine. Can hardly move around. i keep looking for food allergies but testing this spring showed nothing. i just cant get the lyme out of my head. i KNOW I have CFS, and I know the flu I had in 2001 is what threw me into it. BUT, could lyme have started the downfall of my health?

    How do you find someone to help you understand the tests and allow you to have retesting? I have heard that "chronic" lyme imbeds in tissues and is hard to detect in blood tests. And that sometimes while on antibiotics it will kick the buggers out to the blood supply and then can be detected. Can you let us know how they tested you and what your actual result amounts were? I know there must be different labs and ways of testing because some sites talk about testing different "bands". I am so frustrated and really could use a dose of knowledge!
    Thanks again...I am so happy you are gettting better. I am so glad you opened the support door and posted!
    Sorry my reply is so rattled...i am so scared about never finding the answer and so incredibly emotional and excited about you having your life back.
  5. Daisys

    Daisys Member

    Karen, I started out with classic CFS/ME--a terrible flu that became a crushing fatigue that took years to finally go away mostly. I had a few years of almost normal, but knowing that I had to pace myself.

    I had a physical trauma that put me into a relapse that was later diagnosed as FM--unrelenting insomnia, and myofacial pain, and trigger point pain. It was cyclic in that I would be better some years, and worse other years.

    I started to get worse during menopause, and found an integrative doctor who helped me immensely, by adding to the supplements I was already taking, getting my insomnia under control, and supporting hormones--basically helped me with the things that need a doctor's prescription mostly.

    We both thought I was almost in remission when I suddenly was hit with a terrible relapse, and at that time, that doctor was leaviing the state. His partner was willing to accept me as a patient, and he is a LLMD. He recognised that I have lyme. It is a clinical diagnosis, based on history, symptoms, and supported by tests.

    I'm confused by your doctor's comments too. Maybe there are borrelia bacteria that aren't lyme disease, but lyme disease is caused by many different strains of borrelia bacteria. The ticks (and other biting insects) have other infections in them too. There are many coinfections, and I had babesia, EBV, and enterovirus also.

    Side effects: I got worse before I got better because the dead bacteria are toxic, and they release toxins as they die.

    Sue, Your questions and Karen's last questions both can be answered at the same time. I was on 2 different antibiotics for a full year. The spiroketes that cause lyme can change their form to avoid being killed by one antibiotic, so I was on antibiotics that kill both forms, and they were changed every 6 months, so they couldn't develop resistance.

    After a year, I was switched to herbs--I'm taking NutraMedix Samento and Cumanda now, switching them so resistance won't build up. I will probably always be taking something to keep the disease in a dormant state. I'll be diligent with my eating habits to keep as healthy as I can.

    I have, at times gotten as low as 10-20% of normal. Now, my activity level is at 60%, so I have a life, keeping to the basics for now. I look forward to adding to my schedule as I can.

    The 2 biggest problems that remain for me is insomnia and pain. Many symptoms have gone away--I can think clearly now, and have enough energy to do pilates for 20 minutes without trouble, can have long, busy days, and recover with good sleep (with sleep aids), and am comfortable with the meds I'm on.

    I know I have a way to go. It's been a little over a year, and my doctor told me my treatment would take 2 years.

    I recommend educating yourselves about lyme disease, and hopefully find a LLMD. The only way I know how to do that is to go to Lymenet.flash medical questions and list your symptoms and where you live. LLMDs names are not publicly posted, but you will probably get names thru private messaging. They can rule lyme disease out, and treat whatever complicated illness you have, but be aware--most are not preferred providers, because they don't treat with the rules set out by controlling insurance. It's a sad truth, it takes money to get well, because the insurance companies will not pay for this disease until they have to.

    The tide is changing, but slowly. There are some in congress who want to change the rules, and the movie "under our skin" is getting a lot of attention at film festivals, but it will be a while before lyme is accepted, just like CFS, and FM took a long time.

    I wish good health to all, in whatever way you can find. I am hopeful that by next summer, I truly will be in good health myself.
  6. 2sic2mooov

    2sic2mooov New Member

    and advice. The doctor that finally dx you...did he look at the result more or the symptoms that he recognized bc of his background. I do realize that these docs have trouble deciphering all of this when so many diseases, illnesses and syndromes have such similarity. But mine wont even listen to reason and the facts leading up to the big STORM that finally hit me. You are so lucky you happened to have the tests run because that is the only thing most docs SEE and believe. I guess that science is like that!

    Thank you again!
  7. Daisys

    Daisys Member

    The doctor that diagnosed me, made a clinical diagnosis: that is, he used history and symptoms to make the diagnosis, and then tried tests for backup. All my tests came back negative because I'd been sick so long, my immune system left no markers that showed any fight against the infection.

    The only test that came back positive was the CD57 test. The white blood cell called CD57 seems to be suppressed only by Lyme disease--as far as anyone knows of at this time. Normal people have a number of 200 or more, and anything under 60 is said to indicate lyme disease for sure. Mine came in at 50. It's a controversial test, because some will say we don't know if something else causes that cell to be suppressed. It seems consistant enough that lyme literate doctors use it.

    If a person goes thru treatment, and the numbers stay low, they probably will relapse if treatment is stopped. If the numbers go back to normal, usually treatment is stopped, and the person may go a while before symptoms come back--either by being rebitten, or not eating right, or some other problem that affects the person's health and suseptibllity.

    Yes, American medicine is based on tests, and numbers that insurance companies devised to show whether they will pay or not. So, new illnesses fall thru the cracks. No funding is being done for lyme to come up with tests that are accurate.

    It took a long time for FM to become accepted, and it was the 18 tender points that made it a provable illness. Now there's more funding for it, and they're finding out more about it.

    CFS is just now getting the CDC's attention and respect. Because they finally had a complete changeover of the ones in charge, and the new ones saw patients with it in their practices. They had a more open mind, and did a small study. That one convinced them that it's worse than they thought, but look how slow progress is for CFS.

    And I feel many who have FM and CFS, also MS, ALS, autism, alzhiners, and other diseases, actually are caused by the spiroketes, which can go anywhere in the body they want, not dependent on the blood system to get around. They are a corkscrew shape and just bore thru us. They change forms to avoid ABX, so 2 different kinds at the same time are needed to kill them, and their surface changes constantly, so by the time the immune system sees them and starts an attack, they've already become different looking. Lyme is a formidiable enemy.

    There are also many co-infections. I won't even go into that. I just wish there were more lyme literate doctors, and they were allowed to do what they need to do without being pressured to stop treating in the way they know works. Just about the only doctors who will treat lyme have it themselves, or someone they love has it. They are under pressure of losing their careers by treating lyme in the way that cures it, because it's politically unpopular. We who have it are the losers.

    I suggest learning as much as you can. There's herbs that can help. http// is a good source for cheap herbs for lyme.
  8. Forebearance

    Forebearance Member

    Hi Daisys!

    It's so nice to see you back around here!

    I'm so happy to hear that you're feeling better!!!! I hope your Lyme treatment continues to go well.

    I'm feeing better, too. The treatment I'm doing for mold poisoning is working!

    But I had to go stay in a place that has hardly any mold toxin in it before the treatment started making a substantial difference.

    I'm so glad for both of us!

    P.S. I just had a CD57 test done recently. I thought what the heck.
    [This Message was Edited on 11/30/2008]
  9. Waynesrhythm

    Waynesrhythm Member

    Hi Daisys,

    Thanks you so much for your posts here. I was recently diagnosed in September with having three of the top four Lyme bacteria. I've not yet discussed this with my doctor (ND) in Oregon as I've been in the midwest since then.

    When you mention, "Many symptoms have gone away--I can think clearly now", it gives me hope that I too may see some improvement in some of my cognitive function. It gets so bad at times for me, I feel it borders on dementia.

    Mikie mentioned on another thread that she had heard stories of people successfully treating their LD and having their cognitive function return. It's nice to hear you're one of them. It gives me hope... at a time when it is too easy for me to despair.

    Thanks again for taking the time to post on your experiences.

    [This Message was Edited on 12/13/2008]
  10. aftermath

    aftermath New Member


    Thanks for your post. Lyme is definitely an angle that all of us should at least pursue. I'm wondering how long it took on ABX before you started feeling worse (and then better)?


    Out of curiosity, did your tremors/mini stroke symptoms coincide with you starting on ABX for possible Lyme?

    Last January, I saw a well respected CFS doc who put me on strong ABX and Plaquenil for super high mycoplasma titer (again, this was IgG and not IgM, so a shot in the dark). Within a month or so I developed mini-stroke like symptoms for the first time since developing this illness over 15 years ago. She ended up going on extended maternity leave, so I never got any good feedback on this.

    This September, I saw a well respected LLMD (he is actually the president of the ILADS of all things). He put me on doxy for a month. Toward the end of it, I developed the tremoring again.

    I originally thought this was coincidence. Now, it seems like there may be a pattern.
    [This Message was Edited on 12/13/2008]
  11. Nanie46

    Nanie46 Moderator

    Thanks for your post, Daisys. I have had FM for 22 years. I always thought lyme was not an issue for me because I don't have joint pain, until I started reading posts like yours.

    Now I'm pursuing testing through Igenex. The hardest part has been finding a Dr who will order it. I am waiting to hear if my FM Dr who treated me via phone consults for viral issues and food sensitivities, will order it.

    Lyme literate Dr's are so few and far between that getting to one can be a challenge.

    I have read Dr Burrascano's 2005 paper and am even more convinced that I may have lyme.

    I live in rural PA with a heavy deer population.

    I think people get hung up because they know their symptoms are classic FM or CFS. I know that my symptoms are textbook for FM. However, in doing my lyme research, I found that the symptoms of lyme are very much the same.

    That doesn't mean I don't have FM...just means that maybe more than just some viruses caused it....perhaps the lyme borrelia bacteria also.

    There are many good sites for people wanting to learn more about lyme. Some of them are: this paper is titled "Advanced Topics in Lyme Disease- Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses" Sept 2005.......fantastic info from one of the leading lyme experts in the US. to resources, then to "when to suspect lyme".

    The medical community is so uneducated about lyme, just like FM. Hopefully soon I will find a Dr who will order the Igenex testing for me.