I've never posted on this board before, BUT

Discussion in 'Lyme Disease Archives' started by doloresf1, Dec 15, 2007.

  1. doloresf1

    doloresf1 New Member

    I'd like to ask a question of those diagnosed with Lyme. My diagnosis is fibromyalgia. I suspect I have Lyme. My doctor has no training in treating Lyme. I once was tested with a standard Lyme test which turned out negative. But I've had fibromyalgia for 12 years and have gotten sicker.

    How do I get on the right track for treatment? What do I do first, second, and then third? Also, after 12 years with this, is there still hope for me to get better? Thank you for your help. doloresf1
  2. mollystwin

    mollystwin New Member

    Your story sounds like mine. It's very important to find a doctor who understands lyme disease. They are hard to find and you may have to travel to find one. But it's worth it!!

    Your profile doens't say where you are from but we don't post lyme doctors online anyway for their protection. You can go to healingwell.com and ticker will email you personally with a lyme doctor. Or go to lymenet.org and they can help you as well.

    I hope you can find answers to your illness whatever it may be!!!
  3. doloresf1

    doloresf1 New Member

    Thank you for your help. I'm wondering if I should be tested for Lyme again with my PCP before I see a Lyme doctor. or should I get my appointment with the Lyme doctor and then let him test me.

    It's been 12 years since my first Lyme test. If it would be negative again as it was then, is it even worthwhile seeing the Lyme doctor?

    Does medical insurance pay for a Lyme doctor? These doctors are so secretive. If medical insurance doesn't pay it I don't see how I'll be able to go.

    Also, if I do see a Lyme doctor will my PCP disapprove somehow?

    I have so many questions. Any answers from any of you are so welcome.

    Thanks again, doloresf1
  4. mollystwin

    mollystwin New Member

    My PCP disapproves of my lyme treatment. But I don't care!! She certainly hasn't helped me much. My insurance pays for most of my care, but not all. But some LLMDs are different.

    The best lyme test to take is Igenex. It's difficult to get a primary dr to give you one of these. That is why it's better to go to a LLMD. If you can talk your primary dr to give you the ignenex test then you can fax the results to an LLMD for an opinion. Regular drs do not know how to interpret results of lyme tests.

    You can order a lyme test from igenex from thier website. They send it to you for free. You pay them when you mail it back with the blood.

    Good luck to you!!
  5. munch1958

    munch1958 Member

    If you have a past history of a rash and symptoms most LLMDs will treat you. Lyme is a clinical diagnosis to be made in the doctor's office since testing is so poor.

    All I did was pick out a rash from two different posters that looked like the one I had. Then I describe my past and present symptoms.

    I've learned that no symptom is too strange to mention to a LLMD. He doesn't look at my funny when I talk about the burning pain or clicking and buzzing in my ears.

    Or the bizzare things I've seen moving out of the corner of my eye. Musical noises that no one else can hear. All classic Lyme things that he's heard about before.

    There's no poking fun of me. No jokes at my expense. Every symptom is treated like a part of a puzzle.

    Last week for the first time ever I walked out of doctor's office with exactly what I wanted in hand for lab tests and new RXs. Not what the doctor thought I needed but what I wanted and what's been working for me.

    My soon to be ex-FM doc was mad about me going to a LLMD. All he wanted to do is medicate me. That's why he's my ex-doc. I think I'll be making a victory lap back to the FM doc. See almost all better you idiot kind of thing.

    Is it possible for you to choose another doc? If not you may have to handle the situation carefully. Playing to their ego usually works. But then again I don't think much of docs.

  6. munch1958

    munch1958 Member

    If you have a past history of a rash and symptoms most LLMDs will treat you. Lyme is a clinical diagnosis to be made in the doctor's office since testing is so poor.

    All I did was pick out a rash from two different posters that looked like the one I had. Then I describe my past and present symptoms.

    I've learned that no symptom is too strange to mention to a LLMD. He doesn't look at my funny when I talk about the burning pain or clicking and buzzing in my ears.

    Or the bizzare things I've seen moving out of the corner of my eye. Musical noises that no one else can hear. All classic Lyme things that he's heard about before.

    There's no poking fun of me. No jokes at my expense. Every symptom is treated like a part of a puzzle.

    Last week for the first time ever I walked out of doctor's office with exactly what I wanted in hand for lab tests and new RXs. Not what the doctor thought I needed but what I wanted and what's been working for me.

    My soon to be ex-FM doc was mad about me going to a LLMD. All he wanted to do is medicate me. That's why he's my ex-doc. I think I'll be making a victory lap back to the FM doc. See almost all better you idiot kind of thing.

    Is it possible for you to choose another doc? If not you may have to handle the situation carefully. Playing to their ego usually works. But then again I don't think much of docs.

  7. doloresf1

    doloresf1 New Member

    Thank you both for all the helpful information. I don't want to change doctors completely since my PCP has treated me for many years for all general care. I have a good relationship with him, but he just doesn't know about Lyme. I don't dislike him.

    I think I am going to ask my PCP at my appointment tomorrow exactly what he can recommend I do. If I do choose to see a LLMD for Lyme treatment, I will be honest with my PCP about that. I don't want to be taking medicine behind my PCP's back. I think my PCP will respect me for that.

    I'm going to the other Lyme websites also. And thanks for telling me how to find a LLMD.

    Hugs to you both, doloresf1
  8. mollystwin

    mollystwin New Member

    I still see my PCP even though I have an LLMD. I still need her for some things. Even though she doesn't agree with my lyme treatments, I tell her about everything because she prescribes my antidepressants which I am unable to get off for the time being.

    My PCP does my physicals and pap smears etc.

    Good luck to you!!!
  9. doloresf1

    doloresf1 New Member

    also Lupus and Ruematoid Arthritis. I've had these tests before, but it's been a few years.

    My PCP ordered the tests today and I went to the clinic to have the blood drawn after I left my PCP's office.

    My doctor says he just does not see Lyme but is willing to test me. He said if it shows up he will refer me to an Infectious Disease doctor for treatment.

    I'm satisfied with this answer for now. My insurance would cover that treatment. He ordered a Western Blot test. It will take about 2 weeks to get the results.

    If these tests are negative I suppose we'll just continue to keep monitoring my fibromyalgia so that if my symptoms worsen we can get on top of them.

    Healing to all of you. Hugs, doloresf1
  10. mollystwin

    mollystwin New Member

    Keep in mind that not all western blots are created equal. If your doctor ordered a quest western blot it will most likely be negative. Quest western blots are only 30% accurate. So even if you have a negative result, you won't really know if you have lyme.

    Your PCP will not be aware of any of this either. They just don't understand.

    Good luck with your testing. If you do have a positive lyme, make sure you see a LLMD not just any ID doctor.

    dar
  11. munch1958

    munch1958 Member

    My Quest WB showed only one band positive which is 41. A positive there shows spirochetes are present. That means either Lyme, syphilis or gum disease.

    The Igenex WB showed more positive bands but it was still negative even though I had a physician documented tick bite.

    I've ordered a Igenex WB kit to get my husband tested. Just want to rule it out. We were in the same tent when I was bit by the tick. Was I the only lucky one?

    The test kit is free but a doctor must sign off on the form. When the samples are drawn a payment of $240 goes in the kit.

    It says they take Medicare but the wording is very confusing. DH just got on it a few months ago.

    I think I've had this since age 11 after a trip to the Ozarks in 1969. All sorts of strange illnesses and symptoms. Many have gone away.

    There's a detailed record in my profile. Just click on my name and it will come up.

    Let us know how your tests come out.
  12. highcotton

    highcotton New Member

    Through the help of the wonderful people on this board, I recently found out I have Lyme too, after 15 years of a diagnosis of ME/CFS.

    First I want to THANK YOU for believing in Munch and Molly and Dar, whose messages are often ignored.

    Second, are you on disability? If so, you may want to hang on to your "diagnosis" of FM in addition to the Lyme diagnosis -- you don't want to do anything to mess up your disability if you have already been approved.
  13. doloresf1

    doloresf1 New Member

    for responding. No, I'm not on disability. So I'm not worried about that.

    Do you or anyone else know anything about this test? It's a polymerase chain reaction test (PCR). This test analyzes fluid drawn from an infected joint or spine for bacterial DNA. It's supposed to be effective for people with chronic Lyme arthritis or nervous system symptoms. It would be the next step after a negative western blot test.

    Has anyone had this test done?

    Thank you all for responding! Hugs, doloresf1
  14. highcotton

    highcotton New Member

    Hi Dolores,

    I've been reading stephen buhner's book, Healing Lyme, and if I recall correctly, he says that taking a blood test or even a test of your synovial fluid may not always detect Lyme in your joints.

    The problem is that the spirochetes love to burrow like worms into your collogen, and they also like to change shapes, to form cysts that make them invisible to your immune system.

    When the cysts are in hiding in your joints, they may not show up even in a test of the fluid between the joints. That's why, even after long term antibiotics, some people still have Lyme--

    --because the cysts have been hiding out in the joints just waiting for the antibiotics to go away so they can rapidly re-form into spirochetes. Which can happen very quickly.

    At least that is my understanding, and I am still learning.

    good luck!
  15. victoria

    victoria New Member

    PCR is not as good as the Western Blot - which in turn should be done by IGenex.......... please look ilads site, they have good info as to what test/s & lab to use and why, and yes it's backed by research. It's not logical to use a test to prescreen that has a lower reliability than the WB.

    I'm curious as to why you seem so skeptical on other board when you at least were open to the possibility of having lyme here... hope you read some more before entirely dismissing it... the reliability of tests are sadly not very good even if your WB is done by IGenex.

    It's why even the CDC says blood tests should not be the final word... just as syphilis is a masquerader, lyme is - as you know, Lyme is also a spirochete and 2X as complex as syphilis, can't imagine it wouldn't be even more devious at hiding. There were many originally treated for syphilis in the 1930s with penicillin that were thought to be cured who later developed tertiary syphilis...




    [This Message was Edited on 12/28/2007]
  16. doloresf1

    doloresf1 New Member

    Thanks for posting. I got into a real mess over on the other board, didn't I? I'm just frustrated!

    First off, I truly wish your son health and healing. He's so young to be suffering the way he is.

    My tests with my PCP all came back normal except my Sed Rate which was 44. It always runs this number, and I'm told normal is from 0 to 25. So, I do have some inflamation.

    The doctor ruled out RA, Lupus, and yes Lyme. I do not know which Lyme test he ordered. It was a Western Blot, but, now I understand there is more than one kind of Western Blot. So, I don't know.

    My doctor says he's been watching my illness for 12 years now and he just does not see Lyme. And, Victoria, he's a very good medical doctor, and I do trust him. He says if he saw Lyme, he'd treat it. He said he DOES treat Lyme.

    We talked at length about the LLMDs who are often out-of-state, and what their motive is for treating suspected Lyme cases with long-term antibiotics. We came up with the answer that it's money.

    Victoria, there's no way on earth I can afford tests and treatment my insurance does not pay for. And it would not pay for a test I bought off the internet or long-term antibiotics without proven need. If indeed one of these tests showed Lyme, I would see an Infectious Disease Specialist. I have alot of respect and trust in the medical profession. I would not go behind my PCP's back and go to a controversial doctor for controversial treatment.

    BUT, the answer came up Negative for Lyme.

    Why am I this sick then?

    So, my diagnosis is Fibromyalgia, secondary to Osteoarthritis. That makes me angry. I wanted there to be something from which I could get well.

    You know what I mean?

    I'm sorry I stepped on toes on the other board. I'm just going through a hard time with this. I just wish there were more help for me and for all of us.

    Thank you for posting over here to me. In a way, I feel like you befriended me by doing so. Thank you for that. I'll be okay. Hugs, doloresf1

    P.S. I guess I hurt too because so many on the other board bash medical doctors terribly! Why don't they see that some of us do value and respect our doctors?
  17. GoWest

    GoWest New Member

    Dolores,
    There are some Lyme docs who accept health insurance and Medicare. There are doctors who will prescribe antibiotics, safe ones, for a few months to see if you respond - even if you don't have Lyme. I live in Las Vegas but went to a doctor in Pennsylvania near where my Dad lived. I didn't have to pay anything because he accepted Medicare and Blue Cross. Also, my local PC here now gives me antibiotics and is most interested in learning more about infections underlying what look like autoimmune diseases.

    If you send me a private message here I can look through my extensive list of doctors (used to help run an email list) - then you can call the ones near you and see if they accept your insurance. This doesn't have to cost a fortune, and even after you get this second opinion you don't have to do what they suggest. You can think!!!

    Hope to hear from you.

    Paula Carnes
  18. victoria

    victoria New Member

    - and hugs back! Really, I think all of us with personal experience just want to keep the possibilities alive for others who haven't heard about lyme, mycoplasma, etc. Someone was compiling a list of things to check out, I think there were over 100 on it, but don't know what happened to it.

    And ... I feel your frustration, just as I also feel everyone's in explaining without getting too wordy or preachy or coming across too strongly. It's so hard for us all, I think we've all experienced it, both sides... Well we all wouldn't be on these boards if we hadn't, right!?

    It is so difficult to 'know' what is wrong without good tests available. I've read some medical history, and the dx of TB alone cleared up what were thought to be over 100 distinct diseases, and the same for syphilis... because each manifest in so many ways in so many systems, it is still hard to believe...

    but not hard to draw parallels with lyme and other stealth bugs both bacterial and viral. There are many reputable studies on pubmed backing long-term use of abx for lyme and how difficult it is to test for or 'see' clinically, btw.

    --and, I honestly don't think my son's LLMD etc are doing it for money. Most have nothing but trouble instead of a comfortable living. Our own internist admitted he had no idea of what was wrong; but also did not want to treat when we found out. We were forced to go elsewhere.

    My son's LLMD is an internist & an infectious disease doctor, well respected nationally/internationally for his pioneering work in treating HIV-AIDS pts, extremely successful; if you could've seen the clinic that treating HIV/AIDS had created, it'd be obvious what he's given up. But now, he has declared bankruptcy instead of retreating to an extremely comfortable living. He has a very tiny office now....

    So, of course I and many others get passionate... but we also understand the many questions and confusion.

    I also understand the money problems, our son's treatment has been wholly out of pocket for us. We are spending what savings we had, there is no insurance as my DH is on SSD. But like most parents, we are willing to spend for our children's lives if not our own.

    It IS hard to know what to do; I know how we felt when our son's tests were all negative, but our doctor was admittedly confused (and thankfully reluctant to give steroids for pain), so we had no problem consulting another. I do so hope a course of action becomes clear for you ultimately.

    gentle hugs,
    Victoria






  19. victoria

    victoria New Member

    -it's been a long time since I've seen your name, happy to see you here.

    You won't remember me, but I remember you... have talked occasionally with you on different boards with same name usually.... I am still doing the MP, altho I had to take a break for 2 years due to 'life'... still doing ok too thankfully.

    How are you doing these days????

    all the best,
    Victoria

    PS - it's forbidden to give emails online here, no personal messaging either... one has to meet up in a private chatroom to do so. I'd hate to see you get in trouble!

    PPS - are you on a yahoo list? You can always give the basic name of it, if not the exact url, same for another website, as long as done 'obliquely'...




    [This Message was Edited on 12/28/2007]
  20. wld285

    wld285 New Member


    I just posted awhile ago asking about hyperbaric oxygen therapy. I see your son had it, could you elaborate on it?

    Thanks,
    Linda