Anyone with Lyme

Discussion in 'Lyme Disease Archives' started by bettydroop, Mar 20, 2007.

  1. bettydroop

    bettydroop New Member

    have the first prelim. test (sorry forgot name) come back with ANY of the bands POSITIVE and then get tested with the western blot and come back NEGATIVE????

    I think -would if... I take the western blot( since first one came back positive with 2 bands- not much but ...never know if I have it) and it comes back NEGATIVE?? I will be so confused (more than I already am lol ) and probably wonder because I did have something show up at least the first time around.

    I sure wish *SIGH* I could remember the gals name here that has posted before (I think a regular actually - but hasnt replied real recently) about going to the FFC in Seattle/ Bellevue. She has had good luck with Dr. Marti (LOVE HER SHES THE BEST) in treating her Lyme disease. I REALLY would love to ask her a couple of ????

    Is there anyone out there going there and being treated for LYME???? I am interested in only the treatment at the FFC in Seattle not any of the others- I know some people dont like the FFCs for LYME but I believe DRS are different everywhere ya go , and Dr M. is top notch.

    Thanky thanky Bdroop
  2. bettydroop

    bettydroop New Member

    Oh so you JUST took your test and are waiting too- for results? OK. then that means I am not waiting alone. Thanks for saying you will check back- Ill do the same- for you.

    Are you finding it hard to wait at all?

    Now they sent the test to INGENEX. Thats the "good" one right? Thats what I have been hearing.

    SO you had a test come back neg? At first? Forgive me but I forgot what you said in your post. I tell you what, Sometimes I feel like I have the memory of a nat. I dont remember anything. My H just remarked to me something about a movie that we saw and I told him I didnt remember that part he was talking about . Well, come to find out- I ended up NOT remembering anything at all about this movie. I mean it kinda freaked me out cause I have NO idea what he was talking about! You know, how you might forget but you still know that you even WATCHED the movie? I dont even remember watching it at ALL.

    B drooping
  3. munch1958

    munch1958 Member

    I hope you both get clear cut answers! My Quest Western blot was positive for band 41. My IgeneX Western blot was NEGATIVE but I had several positive bands (41) and Bb specific bands that were Indeterminate 31, 39, 83-93, and 23-25.

    I wish my FFC doctor had used the ILADS point system to determine if I had any possible exposure to ticks or a bite in the past. She didn't even bother to check for any high risk outdoor activities in Lyme endemic arease. According to the following I've got 12 points or better!

    . Tick exposure in an endemic region 1
    . History consistent with Lyme 2
    . Systemic signs & symptoms consistent with Bb infection
    (other potential diagnoses excluded):
    . Single system, e.g., monoarthritis 1
    . Two or more systems 2
    . Erythema migrans, physician confirmed 7
    . ACA, biopsy confirmed 7
    . Seropositivity 3
    . Seroconversion on paired sera 4
    . Tissue microscopy, silver stain 3
    . Tissue microscopy, monoclonal IFA 4
    . Culture positivity 4
    . B. burgdorferi antigen recovery 4
    . B. burgdorferi DNA/RNA recovery 4

    . Lyme Borreliosis Highly Likely
    - 7 or above
    . Lyme Borreliosis Possible
    - 5-6
    . Lyme Borreliosis Unlikely
    - 4 or below
  4. bettydroop

    bettydroop New Member

    I hope the answers are clearcut too!

    So what happened with you ? Are they treating you for the LYme or no????

  5. Hootie1

    Hootie1 New Member

    I got my test results for lyme 03/29/07 01:36 PM

    Ok, of course nothing is ever cut and dry, is it? My tests came back overall negative, however, there were two bands that were indeterminate. Also, I cannot tell about the stars, but here it is:

    IGM Results:

    22kDa. -
    **23-25 kDa. -
    28 kDa. -
    30 kDa. -
    **31 kDa. IND
    **34 kDa. -
    **39 kDa. - IND
    **41 kDa. -
    45 kDa. -
    58 kDa. -
    66 kDa. -
    73 kDa. -
    **83-93 kDa. -

    That's it. I didn't get the IGG results because when the FFC faxed them to me, I didn't get the last page, but I know that it is an overall negative.

  6. bettydroop

    bettydroop New Member

    WELL... then how do you feel about this news?

    Are you relieved??

    I logged on to see if you had received your results yet.

  7. Hootie1

    Hootie1 New Member

    Oh, Bdroop!!!! I am very frustrated because I am not confident that it is truly negative!!! I was hoping that it was either clear positive or clear negative. I have had lots of strange test results!!!! The problem is that I can't discard it because of all of the symptoms. I still think that lyme is my base problem. Actually, since I am already on antibiotics for the cpn and mycoplasma, I am actually killing 3 birds with one stone so to speak.

    I'll speak with my doctor next week at the FFC to see what he has to say. Truthfully, I think that the little buggers are hiding. I have been sick for a very long time and it is possible that my body is not creating the antibodies for the lyme. I might end up taking the bowen test out of Florida to find out for sure. If I have lyme, I don't want to not know.

    Thanks for looking me up. :) I got my results earlier than they said I would. I wouldn't be surprised at all if yours might already be done. They faxed mine to the doctor's office. They won't give information over the phone.
  8. hopeful4

    hopeful4 New Member

    Hi Bettydroop,
    I think you might be looking for me. I see Dr. Marti for Lyme. I'm not very good at understanding the Western Blot, others here are really good at that, but I'd be happy to try to answer any questions you may have.

    I've been in treatment w/Dr. Marti since about Nov. 2005. I had to start out very slowly, because of reacting to medications, and herxing. At this point, she's wanting me to get off of the antibiotics fairly soon, but I'm stalling because I still have symptoms, and I don't feel that my immune system has been adequately built up, although it's improved.

    So ask away...
  9. Hootie1

    Hootie1 New Member

    Munch, I forgot to thank you also for your input. I've been keeping up with your posts to see how things are going. I will talk with my FFC doc soon.

    Bettydroop - I can't wait to hear your results. Don't forget to post them. I hope yours are more clear cut than mine. I will probably need to take the test again- perhaps I might go to Bowen next to get more of a clearcut answer. I have no doubt that I have a lyme problem (I think...- how' that for being sure!).
  10. bettydroop

    bettydroop New Member

    I am so sorry -really sorry- that you rresults came out like that. OH how I pray that I will either get a neg or positive so I can just KNOW> ! I was hopeing that wouldnt happen to you. I keep thinking how I just wanna know, either way - like you.

    You mentioned doing another test? What is your next step?

    I hope things sort out for you really soon, its just so hard to figure things out when the tests arent conclusive, you have a BUNCH of different OPINIONS from people...either way, you want to do the right thing... ugg.

    Hope your day is as good as it can be.

    Oh and hang in there.

    B. droop.
  11. bettydroop

    bettydroop New Member

    HA! Yes, I AM looking for you. Thanks for replying.

    I was curious about what your treatment was like with Dr. Marti. I think shes great and she has helped me so far.

    Oh shoots, I forgot what all I was going to ask you about (should have written it down like I do everything else now with MY memory - I have to write myself notes all over the place) regarding DR. M at the FFC. I guess I wanted to know her Tx for Lyme and how you have been getting on with things there. Also, if you ever felt like you should go to one of these LL docs OR if you felt content where you are. I have looked in our state and we have nothing- as far as I can tell- for LLdrs.

    HOpe your having a great day!

    Thanks much, B Droop.

  12. hopeful4

    hopeful4 New Member

    Hi Betty,

    Hi Betty,
    First, I think Dr. Marti is fantastic. She had just started working with me as a patient, and had me tested for Lyme with Igenex. Previously, I had gone to a different FFC for 7 months, and they had used the Elisa test, which was negative. So, Dr. M. really saved me.

    I like that her approach is integrated. I started out with very low hormone levels. I cannot take many of the bio-identical hormones because I had breast cancer. She is very careful about that. I do take the compounded thyroid medication. Over a period of time we worked on building that up a bit, and tweaking the content.

    I also used the bio-identical cortisol. Although it did help me have more energy, it exasperated a swelling and vein problem that I have in my legs. So, recently, I stopped taking it. That caused me to crash. So she found something else for me to try, it’s Adrenal Stress-End from Dr. Teitelbaum. It helped almost immediately. Now, I’m barely ever napping during the day anymore. Previously I was napping for 2 hours/day, even on the cortisol.

    I also had other infections: mycoplasma pneumoniae and echovirus. These are now gone. I had systemic candida, and because I’m on anti-biotics, I continue taking Nystatin, pro-biotics, and eat mostly a candida diet. Some people take Diflucan for candida, but I got very sick on it previously.

    My immune system was very low. I started out with a rock bottom NK cell function. Now I’m inching up to low normal. Building up the immune system is really important in treating Lyme. I think many of the supplements I take help with that. Maitake is the main thing I take, and I’m going to start taking ProBoost as well. I’m currently using a different type of Maitake than the FFC uses, and I’m going to switch to use something closer to their Maitake D Fraction. It’s also helpful as a cancer preventative.

    For the Lyme specifically, I started on Doxycycline, but could not tolerate it. So Dr. M. switched me to Azithromycin. I gradually added in other things: Omnicef, and Amantadine. She tried my on Mepron, and that made me sick, so she took me off of it.

    Also for the Lyme she has me on artemisinin, and lumbrokinase (for hypercoagulation). I no longer have the hypercoagulation, so I’ve been able to cut back on the lumbrokinase.

    I’m also on the Nutrimedix protocol: Cumanda, Samento and Burbur.

    Other supplements are: COQ10 (for brain, heart), SAM-e (for depression), acetyl-l-carnitine, Omega-3 fish oil, multi-vitamin/mineral, and a few things from another doctor for other health reasons.

    I have gone through some difficult periods, and wondered if I would get through them. As the Lyme is killed off, toxins are released into the body, and can make you sick, and do strange things that can be scary.
    For example, I became so fatigued and my legs became so weak, that I was barely able to walk around the perimeter of my small house. I also had a period where I became extremely irritable and irrational, and the worst was a plunge into a very frightening, deep depression.

    So, Dr. Marti had me cut back on the medications, and pulse the Azithromycin by taking it 3 weeks on, 1 week off. That helped enormously.

    I forgot to mention the cholestyramine I take. It helps flush out the neuron-toxins, and I can notice improvements in my mental functioning…hurray!!

    Overall, I’ve been very happy with Dr. M’s ability to help me. I feel very comfortable talking to her. She never gets defensive if I ask questions. She wrote me an excellent letter which I used in my Social Security Disability appeal, which got me additional coverage for a disputed period of time.

    At times I’ve thought about trying to see a different LLMD. First, I want to see how things continue with Dr. M. If I reach some kind of impasse, or can no longer take antibiotics, or something like that, then I may go to someone else.

    Have you gone to the Washington Lyme website? walyme dot com There you will find a listing of LF and LL doctors. You can also post on lymenet dot org and someone may suggest a LLMD for you.

    Take care. Treating this disease is not a sprint, it's more like running a marathon on a rocky road.


  13. Chootik

    Chootik New Member

    I read your post of your Lyme Protocal. Very similar to mine, except I'm just staring on Azithromycin and will be taking it for 3 months. How long are you going to take it?

    Also why did you add Omincef & Amantadine?

    My real question for you though is do you have any Autoimmune conditions due to Lyme??

    I got Hashimotos Thyroditis from it and because of that lately when I'm taking Artemicin and Garlic capsuls I get sweeling under my jaw and got really bad body pain so had to stop.. did this ever happen to you? How can I still do the herbals but make sure that it's not effecting my Immune System too badly?

    This is really confusing and I wish to god doctors could help us more with it...

    Thanks for the help.
  14. hopeful4

    hopeful4 New Member

    The reason I'm taking the Omnicef and the Amantadine is probably best described from this cut and past I found from Dr. Stricker:

    "Now, combination therapy has evolved over the last few years. The principle of combinations is generally to use a macrolide such as Clarithromycin or Azithromycin combined with something like a Cephalosporin such as Ceftriaxin and more recently Omnicef.

    The idea being that these are really synergistic antibiotics, the Cephalosporin gets into the cell and kills the bugs in the cell whereas the macrolide works outside the cell and can kill the bugs when they come outside the cell.

    In particular, Omnicef with Biaxin or Zithromax (Azithromycin) has become a very, very effective treatment for Chronic Lyme Disease and this should probably be the treatment of choice for patients who have primarily musculoskeletal disease except for the fact that they are relatively expensive and that’s limited their use over Doxycycline.

    Another combination that you heard about this morning, is the combination, again, of a macrolide plus Metronidazole or Flagyl. As you heard Flagyl kills the spore forms of Borrelia and again the reason for using this combination is that Flagyl gets into cells and can kill the bugs in the cells but it has no activity outside the cells so you need something else to go with it such as a macrolide to kill the bugs when they come out of the cyst form and get outside the cell..."

    I don't know how much longer I'll be on the Azithromycin. I've been on it about a year. My doctor would like to have me stop soon. Acording to Dr. Buruscano, one should be symptom-free for 2-3 months before stopping abx.

    The reason for the Amantadine, is that it also synergistcally works, and helps the medication absorb into the body better.

    As far as the auto-immune goes, no, fortunately I haven't had that problem. I'm sorry that you're dealing with that, and honestly, I just don't know much about that.

    I know what you mean about wishing doctors knew a lot more, and could be much more helpful to us. Also, we are all so individual in how we respond to the treatment, and we all may have different co-infections and other underlying health problems to deal with as well.

    Wishing you the best of health,
  15. munch1958

    munch1958 Member

    I was on Minocin for over 6 months with some symptom relief. Then I did 2 weeks off followed by 6 weeks on and 7 weeks off. That was a huge mistake. I should have gone back on Minocin after 3 weeks.

    When I stop the ABX many of my symptoms return. Since the FFC said it was not Lyme I thought the herxing from ABX was due to mycoplasma or chlymadia pneumonia.

    I restarted Minocin on Feb 7th. I've had horrible flu like feelings for the past week. The night sweats are the worst. I'm taking a decent dose of estrogen so I don't think it's menopause.

    I quit going to the Detroit FFC and changed to two different doctors in Chicago. Neither are LLMDs. There are no LLMDs in IL because there's no Lyme here. Ha Ha! Funny stuff since ticks don't know state boundries. Not to mention IL is right in the path of migrating birds. I suppose the birds know to leave their ticks in other states!

    The one doctor is good with hormones and holistic treatments but does not believe any infections are responsible for CF/FM. The other hates hormones especially hydrocortisone. I dream of finding one doctor who can do it all. I hoped that was going to be FFC but...

    Last week, I was switched to Zithromax (Azithromycin) but I haven't started it yet. I have mail order pharmacy and the order hasn't arrived. This doctor believes symptoms are due to post-Lyme infection auto immune disorder.

    In mid April I am going to see a LLMD in Springfield, MO for a second opinion. I'd like to see what a LLMD suggests before making a decision beyond changing oral ABX.

    I'm still not 100% certain if it's Lyme because that's a clinical diagnosis. It is entirely possible to test negative for the disease and still have it.

    I'm going to try Stephen Buhner's protocol with the Zithromax. If I herx on Cumanda or Cat's Claw I think I will have my own answer. Maybe I'll have my husband slip it into my pill locker. Then I can conduct have my own blind study.

    If I could find someone else to slip him the herbs (or maybe not) then it could be a double blind because neither one of us will know what I'm taking. Of course I'm being sarcastic here. Whatever happened to patients being believed? If I say I herx on ABX do I need a double blind placebo controlled study to be believed?

    I've posted my IgeneX test results on Lymenet and below. Most of the people that have looked at my results say it is Lyme. Band 39 is one that shows up IND or positive in long standing LD.

    Not all FFCs are equal. I think outcomes there are based on the skill of the doctor. The Detroit FFC has an excellent office manager. She is a nurse with CF and IC. I've talked to her many times for long periods. I think she knows her stuff. Most of her family also has the DD.

    I say it's the doctor failed to make the diagnosis. My Quest Western Blot was positive but the IgeneX was negative. The letter that I got from the FFC doctor says the tests are unreliable yet she relied on them to decide it was not Lyme and didn't treat me. Kind of a double standard there.

    When I herxed on the Doxy prescribed after the Quest came back positive they should have paid attention! The FFC doctor relied on my written summary of my medical records instead of reviewing them. I didn't know anything about Bb and would not have known what to look for in my records.

    I was hospitalized for 3 weeks in 2001 in 3 different hospitals within days of returning home from an out of state camping trip. I was dehydrated and had an electolyte imbalance, hypercalcemia, sarcoidosis, encephalopathy, liver and kidney failure. I developed aphasia (I couldn't speak) because my face was numb. Another hospital decided it was epilepsy but I think it was some kind of palsy.

    One of the reasons I’d like to see this doctor is for the testing he offers. He does a 24 hour urine test for 21 hormones for women (including growth hormone). The FFC never did balance my hormones. I wanted more thyroid and less hydrocortisone. I realized during the first visit that I know more about B-HRT than the Detroit FFC doctor.

    I also want to get a MOCHA panel for hypercoagulation. In spite of a normal fibrin test result, I was given Lumbrokinaise through FFC. That made me violently ill when taken with the Minocin, Diflucan, Nystatin, and FFCs AV supplement. Still trying to understand that.

    I hope everyone posts their test results! Here are mine:

    **23-25 IND
    30 ++
    **34 IND
    **39 IND
    **41 ++

    **31 IND
    **39 IND
    **41 ++
    58 ++
    **83-93 IND

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