CFS and Lyme Disease

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by TigerLilea, Apr 7, 2013.

  1. TigerLilea

    TigerLilea Member

    For anyone here who was later diagnosed with Lyme Disease, what antibiotics did your doctor use? I know that there is a member here who is quite Lyme literate, but I can't remember your name. Sorry! I have a friend who has had Lyme for several years now and isn't getting any help from her GP. She recently was tested at a clinic in AZ and it was confirmed that she still has Lyme, but they want $67,000 for six weeks treatment which is just out of the question because of limited finances. Any suggestions anyone can offer will be greatly appreciated.
  2. vickiw

    vickiw Member

    My doc has me on Ceptin, Azithromycin and Tinidazole (Doxycycline causes nausea and vomiting, so I cannot take it). I've been on them for 3 months, and am in the final month of treatment. The tinidazole is pulsed 2 weeks on and 2 weeks off.

    The abx combination has to do with the different forms that the lyme spirochete takes - cyst form and biofilms. My dr prefers IV treatment but he is too far for me to get there 5 days a week. He will not do picc lines (IV port where you put in the abx yourself).

    I've been sick for 10 years, bed bound for the last 6 yrs. I am making progress and feeling better for the first time in all these years. I still have a long way to go, but all symptoms have shown improvement.

    I was tested for Lyme at least once a year - usually at my request - and was told every single time that I didn't have Lyme and never did, even though I had a textbook lyme reaction to 2 tick bites. I was told I have ME/CFS.

    I finally found a doctor who did a thorough clinical history, along with a urine dot-blot assay (I think that was the name). 3 urine samples came back positive for lyme.

    $67,000 sounds like a crazy rip-off for 6 wks treatment. I haven't totaled up what I've paid, but I'd guess it's $2000-3000 so far. My insurance co has covered the medication. I pay for doctor visits and supplements. The probiotics are expensive ($55 -$65 for 20 days), but worth every penny.

    Best of luck to your friend. I cannot believe how my life has changed.

    I found my current doctor on my own by googling (and lots of prayer!)
  3. vickiw

    vickiw Member

    My doc has me on Ceptin, Azithromycin and Tinidazole (Doxycycline causes nausea and vomiting, so I cannot take it). I've been on them for 3 months, and am in the final month of treatment. The tinidazole is pulsed 2 weeks on and 2 weeks off.

    The abx combination has to do with the different forms that the lyme spirochete takes - cyst form and biofilms. My dr prefers IV treatment but he is too far for me to get there 5 days a week. He will not do picc lines (IV port where you put in the abx yourself).

    I've been sick for 10 years, bed bound for the last 6 yrs. I am making progress and feeling better for the first time in all these years. I still have a long way to go, but all symptoms have shown improvement.

    I was tested for Lyme at least once a year - usually at my request - and was told every single time that I didn't have Lyme and never did, even though I had a textbook lyme reaction to 2 tick bites. I was told I have ME/CFS.

    I finally found a doctor who did a thorough clinical history, along with a urine dot-blot assay (I think that was the name). 3 urine samples came back positive for lyme.

    $67,000 sounds like a crazy rip-off for 6 wks treatment. I haven't totaled up what I've paid, but I'd guess it's $2000-3000 so far. My insurance co has covered the medication. I pay for doctor visits and supplements. The probiotics are expensive ($55 -$65 for 20 days), but worth every penny.

    Best of luck to your friend. I cannot believe how my life has changed.

    I found my current doctor on my own by googling (and lots of prayer!)
  4. If you don't mind me asking, who are your doctors?

    I just got labs back today that showed that I tested positive for Lyme... So the lab sheet says that they added the western blot test as recommended by the FDA.... So waiting on those results. But it also states that the Western Blot test can give false negatives... So why even do that test then?

    Can both of you tell me what tests were run so that you could get an accurate diagnosis? My number wasn't that high outside of the normal range, but why would it be high at all unless a person has Lyme?

    Shel
  5. If you don't mind me asking, who are your doctors?

    I just got labs back today that showed that I tested positive for Lyme... So the lab sheet says that they added the western blot test as recommended by the FDA.... So waiting on those results. But it also states that the Western Blot test can give false negatives... So why even do that test then?

    Can both of you tell me what tests were run so that you could get an accurate diagnosis? My number wasn't that high outside of the normal range, but why would it be high at all unless a person has Lyme?

    Shel
  6. vickiw

    vickiw Member

    Hi Shel,

    I go to Dr Braccia in Harleysville PA. It's a little north of Philadelphia. You can google for his website.

    If you click around there, you can find a list of the tests that he does. All tests can give false positives and false negatives (he tells the % of false results). This is why he also gives an hour or so interview to learn one's history of symptoms and so on. He decides whether to treat based on the combination, rather than the tests alone.

    He has a thoughtful, intelligent approach to the whole subject.

    Did you see the movie "Under Our Skin"? I watched it for free on hulu. It was the reason I decided to pursue this course of action. I'd highly recommend it to anyone with a diagnosis of ME/CFS or fibromyalgia.

    Dr B treats aggressively with abx for 3-4 months, then switches to herbals. In the movie, some people were treated with abx for as long as five years, which seems scary but it worked for them.

    It's nuts that people can be so sick from this and yet the tests that most doctors strictly rely on are so-so at best.
  7. vickiw

    vickiw Member

    Hi Shel,

    I go to Dr Braccia in Harleysville PA. It's a little north of Philadelphia. You can google for his website.

    If you click around there, you can find a list of the tests that he does. All tests can give false positives and false negatives (he tells the % of false results). This is why he also gives an hour or so interview to learn one's history of symptoms and so on. He decides whether to treat based on the combination, rather than the tests alone.

    He has a thoughtful, intelligent approach to the whole subject.

    Did you see the movie "Under Our Skin"? I watched it for free on hulu. It was the reason I decided to pursue this course of action. I'd highly recommend it to anyone with a diagnosis of ME/CFS or fibromyalgia.

    Dr B treats aggressively with abx for 3-4 months, then switches to herbals. In the movie, some people were treated with abx for as long as five years, which seems scary but it worked for them.

    It's nuts that people can be so sick from this and yet the tests that most doctors strictly rely on are so-so at best.
  8. Nanie46

    Nanie46 Moderator

    The ELISA/Lyme Screen that you had misses most cases of Lyme, so if you are positive then I would believe it.

    It is also hard to get a positive on a common western blot because of the difficult criteria that the CDC set up to meet to be positive...therefore giving false negative results. Plus it is only an antibody test, and there are many reasons why a person may no longer be making antibodies against it.

    I had a western blot from a typical hospital lab first and it was CDC negative.

    Then I found a Dr who would order a western blot from Igenex lab in CA. It was also CDC negative, but Igenex tests for many more bands than other labs. Those other bands were lyme specific bands that I showed positives on. That was a huge clue, even though I didn't have enough positives on the bands that the CDC says one must have. I had to know about the lyme specific bands myself, because the Dr did not know about them...then I found a LLMD.

    If you really study lyme testing, you will see why so many people are never properly diagnosed. The tests are very inaccurate and miss many cases of lyme for various reasons.

    If I were you, I would find a Lyme literate MD and have a thorough evaluation.

    If our private messaging system was started I would send you a message about my Dr....but it has not started just yet...soon though.

    LLMD's do not like their name publically posted because they are harrassed by medical boards, other Dr's and insurance companies who think lyme should only be treated with a few weeks of antibiotics.

    I was treated for 3 yrs and now I do some herbals and lots of supplements.

    It is doubtful that the Dr that is ordering your testing really understands chronic lyme.

    Lyme is really a clinical diagnosis, based on history, symptoms, exam and labs...it should NEVER be ruled out by just a lab test...which happens all the time.


    Please read this:


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


    http://www.prohealth.com/library/showArticle.cfm?libid=16301&B1=EG060111


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


    http://www.ilads.org/lyme_disease/about_lyme.html



    For now, you can go to lymenet dot org, click on flash discussion, sign up for free, click on "Seeking a Doctor" board, click on "Post New Topic" and create a post asking for LLMD's in your state....put your state in the title of the post so people can see what you need.

    If you need more info, just let me know.

    Good luck to you!!
  9. Nanie46

    Nanie46 Moderator

    The ELISA/Lyme Screen that you had misses most cases of Lyme, so if you are positive then I would believe it.

    It is also hard to get a positive on a common western blot because of the difficult criteria that the CDC set up to meet to be positive...therefore giving false negative results. Plus it is only an antibody test, and there are many reasons why a person may no longer be making antibodies against it.

    I had a western blot from a typical hospital lab first and it was CDC negative.

    Then I found a Dr who would order a western blot from Igenex lab in CA. It was also CDC negative, but Igenex tests for many more bands than other labs. Those other bands were lyme specific bands that I showed positives on. That was a huge clue, even though I didn't have enough positives on the bands that the CDC says one must have. I had to know about the lyme specific bands myself, because the Dr did not know about them...then I found a LLMD.

    If you really study lyme testing, you will see why so many people are never properly diagnosed. The tests are very inaccurate and miss many cases of lyme for various reasons.

    If I were you, I would find a Lyme literate MD and have a thorough evaluation.

    If our private messaging system was started I would send you a message about my Dr....but it has not started just yet...soon though.

    LLMD's do not like their name publically posted because they are harrassed by medical boards, other Dr's and insurance companies who think lyme should only be treated with a few weeks of antibiotics.

    I was treated for 3 yrs and now I do some herbals and lots of supplements.

    It is doubtful that the Dr that is ordering your testing really understands chronic lyme.

    Lyme is really a clinical diagnosis, based on history, symptoms, exam and labs...it should NEVER be ruled out by just a lab test...which happens all the time.


    Please read this:


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


    http://www.prohealth.com/library/showArticle.cfm?libid=16301&B1=EG060111


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


    http://www.ilads.org/lyme_disease/about_lyme.html



    For now, you can go to lymenet dot org, click on flash discussion, sign up for free, click on "Seeking a Doctor" board, click on "Post New Topic" and create a post asking for LLMD's in your state....put your state in the title of the post so people can see what you need.

    If you need more info, just let me know.

    Good luck to you!!
  10. .... Thank you both SO much for this wealth ofinformation! I will def look into everything you both shared. Thank you!

    If Lyme is behind all my years (almost ten) of suffering and turning my life upside down and no doctor (I went to TONS of diff doctors, including neurologists) ever picked up on this, that is very upsetting and crazy to me!

    And I have to wonder how much permanent damage has been done to my central nervous system and possibly vital organs after this much time has gone by... I HOPE that's not the case though...

    Can you both tell me how long you suffered before getting an accurate diagnosis of Lyme and how long after treatment started did you start feeling improvement?

    Also, what does "abx" stand for?

    Thanks again so much! You're both a blessing!

    Hugs,
    Shel

    [This Message was Edited on 04/27/2013]
  11. .... Thank you both SO much for this wealth ofinformation! I will def look into everything you both shared. Thank you!

    If Lyme is behind all my years (almost ten) of suffering and turning my life upside down and no doctor (I went to TONS of diff doctors, including neurologists) ever picked up on this, that is very upsetting and crazy to me!

    And I have to wonder how much permanent damage has been done to my central nervous system and possibly vital organs after this much time has gone by... I HOPE that's not the case though...

    Can you both tell me how long you suffered before getting an accurate diagnosis of Lyme and how long after treatment started did you start feeling improvement?

    Also, what does "abx" stand for?

    Thanks again so much! You're both a blessing!

    Hugs,
    Shel

    [This Message was Edited on 04/27/2013]
  12. Nanie46

    Nanie46 Moderator

    Hi Shel,

    Abx stands for antibiotics.

    I suffered for 21 years before a correct diagnosis. Before that, my symptoms were only diagnosed as FM. I was finally diagnosed because of my own research and searching out a LLMD. I knew I could not count on any of my regular Dr's to know about chronic lyme.

    Most people with lyme also have other co-infections. That is very important to remember. Some common ones are bartonella, babesia, ehrlichia, mycoplasma, and others.

    I did test positive for Rocky Mt Spotted fever.

    I started to feel my first improvements about 3 months or so into my treatment and that was only because my LLMD tested my hormones and prescribed bioidenticals to balance my very out-of-whack hormones. There was a considerable period of herxing at first, due to all the die-off of bacteria.

    When my LLMD prescribed hormones, I was able to sleep, and the fatigue went away.

    Then about 9 months into my treatment, after going off doxy for the summer and then getting back on it in Oct of that year, I started to have improvement in pain, notably the excrutiating, horrible neck/head/shoulder pain.

    I treated for 3 years with abx.

    I can't stress enough, the importance of reading all that info above, and educating yourself about lyme/chronic lyme. There is so much misinformation out there, and 99% of Dr's are uneducated about lyme.

    If there is anyone out there wondering about lyme, I do suggest watching "Under Our Skin" on hulu online for free. It is a documentary film about the unrecognized lyme disease epidemic. To find it just Google "Under Our Skin Hulu".


  13. Nanie46

    Nanie46 Moderator

    Hi Shel,

    Abx stands for antibiotics.

    I suffered for 21 years before a correct diagnosis. Before that, my symptoms were only diagnosed as FM. I was finally diagnosed because of my own research and searching out a LLMD. I knew I could not count on any of my regular Dr's to know about chronic lyme.

    Most people with lyme also have other co-infections. That is very important to remember. Some common ones are bartonella, babesia, ehrlichia, mycoplasma, and others.

    I did test positive for Rocky Mt Spotted fever.

    I started to feel my first improvements about 3 months or so into my treatment and that was only because my LLMD tested my hormones and prescribed bioidenticals to balance my very out-of-whack hormones. There was a considerable period of herxing at first, due to all the die-off of bacteria.

    When my LLMD prescribed hormones, I was able to sleep, and the fatigue went away.

    Then about 9 months into my treatment, after going off doxy for the summer and then getting back on it in Oct of that year, I started to have improvement in pain, notably the excrutiating, horrible neck/head/shoulder pain.

    I treated for 3 years with abx.

    I can't stress enough, the importance of reading all that info above, and educating yourself about lyme/chronic lyme. There is so much misinformation out there, and 99% of Dr's are uneducated about lyme.

    If there is anyone out there wondering about lyme, I do suggest watching "Under Our Skin" on hulu online for free. It is a documentary film about the unrecognized lyme disease epidemic. To find it just Google "Under Our Skin Hulu".


  14. vickiw

    vickiw Member

    You are more than welcome!

    I've been very ill with this for 10 1/2 years. Bed-bound for the last 6 years.

    Improvement for me has been very gradual. As Nanie said, there was some herxing in the beginning. It didn't last long for me but it was very intense.

    Areas that have improved: post exertional relapse, sleep, digestive problems, sensory overload, orthostatic intolerance (I can stand without feeling like I'm dying!!!) and pain.

    I still have a way to go, but I'm so much better than I was. Even when I talk to family and friends on the phone, they can tell the difference.

  15. vickiw

    vickiw Member

    You are more than welcome!

    I've been very ill with this for 10 1/2 years. Bed-bound for the last 6 years.

    Improvement for me has been very gradual. As Nanie said, there was some herxing in the beginning. It didn't last long for me but it was very intense.

    Areas that have improved: post exertional relapse, sleep, digestive problems, sensory overload, orthostatic intolerance (I can stand without feeling like I'm dying!!!) and pain.

    I still have a way to go, but I'm so much better than I was. Even when I talk to family and friends on the phone, they can tell the difference.

  16. Thank you so much for sharing this info and your experience with me.

    I've been reading a ton today on the sites y'all listed (have prob done more than I should at one time... Worn out now)... But I am appalled to find out that Lyme Disease is so controversial and doctors who treat Lyme can be harassed and "investigated". Has this world gone crazy?! Or maybe it's just our country...

    Seems to me that the CDC and "the powers that be" would want to know if there's a Lyme epidemic in this country and be proactive in educating folks in the prevention and treatment of Lyme Disease, NOT HIDING IT, and NOT second-guessing or persecuting the doctors who SPECIALIZE in treating this horrible disease! Are you kidding me?! People are suffering and dying from this!

    If I'm this ticked off already, I can imagine what I'm going to feel after watching that documentary y'all mentioned! I'm just outraged and can't believe what I'm reading! It's pure craziness! All in the name of the almighty dollar... Shameful...

    Thanks again so much for all your help! I've located a doc only an hour and a half away who will order a bunch of tests first and allow me to send him a summary of my symptoms before having to go in to see him. I thought that was very thoughtful and considerate of him... Praying I can FINALLY get on the road to recovery after SO many years...

    I'm so glad you are both doing so much better since your treatment for Lyme! Thanks again for sharing... And for caring! God bless you both!

    Hugs,
    Shel
  17. Thank you so much for sharing this info and your experience with me.

    I've been reading a ton today on the sites y'all listed (have prob done more than I should at one time... Worn out now)... But I am appalled to find out that Lyme Disease is so controversial and doctors who treat Lyme can be harassed and "investigated". Has this world gone crazy?! Or maybe it's just our country...

    Seems to me that the CDC and "the powers that be" would want to know if there's a Lyme epidemic in this country and be proactive in educating folks in the prevention and treatment of Lyme Disease, NOT HIDING IT, and NOT second-guessing or persecuting the doctors who SPECIALIZE in treating this horrible disease! Are you kidding me?! People are suffering and dying from this!

    If I'm this ticked off already, I can imagine what I'm going to feel after watching that documentary y'all mentioned! I'm just outraged and can't believe what I'm reading! It's pure craziness! All in the name of the almighty dollar... Shameful...

    Thanks again so much for all your help! I've located a doc only an hour and a half away who will order a bunch of tests first and allow me to send him a summary of my symptoms before having to go in to see him. I thought that was very thoughtful and considerate of him... Praying I can FINALLY get on the road to recovery after SO many years...

    I'm so glad you are both doing so much better since your treatment for Lyme! Thanks again for sharing... And for caring! God bless you both!

    Hugs,
    Shel
  18. Nanie46

    Nanie46 Moderator

    Hi Shel,

    You are very welcome!

    I pray that the Dr you found can help you.

    I was just as appalled as you, when I first discovered I had lyme, and found out how most Dr's deny that chronic lyme exists or requires long-term treatment.

    I think everyone feels that way when they learn about how thousands and thousands of chronically ill people are being denied proper diagnosis and treatment.

    Do you think the Dr you found is a LLMD who follows ILADS guidelines instead of IDSA guidelines? Do you know what lab he uses for his Lyme testing?

    I'm very happy that you have new hope for recovering. I may not ever be 100%, but I am at least 85% better than I used to be, and that's a blessing.

    I know a woman, a friend of my sister, who had really severe symptoms for at least 10 years. Her symptoms were very neurological, with the most prominent being the cog-wheel-like constant motion she was always in, restless leg syndrome, pain and fatigue.

    She really looked like a Parkinson's patient. She was so sick, she looked like she would die within a few months.

    She finally listened to my sister, who had learned about lyme from me. We had told this woman at least 2 years ago that she likely had Lyme. She or her mother did not listen.

    She went to many other Dr's looking for answers, and got one diagnosis after another that did nothing but name her symptoms, but did not help her recover.

    Finally in Dec 2012, she agreed to see a LLMD. My sister is driving several hours from her home on a regular basis to take this woman another couple hours away to see the LLMD.

    I am so amazed at how much progress she has made in only 4 months! I have never seen someone so sick, respond to long-term treatment this way.

    She no longer is in that constant parkinson's-like motion, is putting on regular clothes (which she had not done in years) and make-up, says she feels great, is able to eat better and more!

    Obviously, she would likely backslide quickly if she stopped treatment so soon, but her progress has been absolutely amazing.

    Never give up hope....God has great plans for your life!
  19. Nanie46

    Nanie46 Moderator

    Hi Shel,

    You are very welcome!

    I pray that the Dr you found can help you.

    I was just as appalled as you, when I first discovered I had lyme, and found out how most Dr's deny that chronic lyme exists or requires long-term treatment.

    I think everyone feels that way when they learn about how thousands and thousands of chronically ill people are being denied proper diagnosis and treatment.

    Do you think the Dr you found is a LLMD who follows ILADS guidelines instead of IDSA guidelines? Do you know what lab he uses for his Lyme testing?

    I'm very happy that you have new hope for recovering. I may not ever be 100%, but I am at least 85% better than I used to be, and that's a blessing.

    I know a woman, a friend of my sister, who had really severe symptoms for at least 10 years. Her symptoms were very neurological, with the most prominent being the cog-wheel-like constant motion she was always in, restless leg syndrome, pain and fatigue.

    She really looked like a Parkinson's patient. She was so sick, she looked like she would die within a few months.

    She finally listened to my sister, who had learned about lyme from me. We had told this woman at least 2 years ago that she likely had Lyme. She or her mother did not listen.

    She went to many other Dr's looking for answers, and got one diagnosis after another that did nothing but name her symptoms, but did not help her recover.

    Finally in Dec 2012, she agreed to see a LLMD. My sister is driving several hours from her home on a regular basis to take this woman another couple hours away to see the LLMD.

    I am so amazed at how much progress she has made in only 4 months! I have never seen someone so sick, respond to long-term treatment this way.

    She no longer is in that constant parkinson's-like motion, is putting on regular clothes (which she had not done in years) and make-up, says she feels great, is able to eat better and more!

    Obviously, she would likely backslide quickly if she stopped treatment so soon, but her progress has been absolutely amazing.

    Never give up hope....God has great plans for your life!
  20. ... for the encouragement! I'm feeling so bad right now, that I can sure use it!

    I'm pretty sure that this doctor is an LLMD and uses the ILADS guidelines, because he mentioned that he had to order the tests a certain way so to be under the radar of the insurance company. But I will be sure to ask.... Thank you for pointing that out! And I'm not sure what lab he uses....

    That is amazing and encouraging news about your sister's friend! What a blessing of a friend your sister is!! I sure wish i could have had a friend like that along the way! Instead, I've been surrounded by more judgmental and apathetic folks. :( Your sister must be a rare gem!! Thanks for sharing that with me! It gives me hope...

    Can you tell me which antibiotics your doctor used and whether they were by I.V. or by mouth? I've read that the longer one has had Lyme without treatment, the less effective the oral antibiotics are, so I.V. is recommended. And did you say you were on abx for 3 years? And did your doctor use anything in addition to the abx, like herbal treatments or anything? Wish you could mention your docs name, but I understand why you can't.

    If you don't mind me asking, what part of the country are you in? I've learned that its harder to be diagnosed in Florida, where I am, because the state keeps claiming that there is no Lyme Disease here.... In spite of statistics that say different! Pure craziness!

    I'm just praying that this doc I'm going to try is really a good LLMD... I've been disappointed so many times over the years with doctors, that I'm trying not to get my hopes up.

    I did go to Vicki's doctor's site, and he does sound like a very good LLMD. Wish I lived in Pennsylvania cause I would certainly give him a try!

    Thanks again for taking the time to answer my questions and give feedback! God bless you!

    Hugs,
    Shel
    [This Message was Edited on 04/28/2013]
  21. ... for the encouragement! I'm feeling so bad right now, that I can sure use it!

    I'm pretty sure that this doctor is an LLMD and uses the ILADS guidelines, because he mentioned that he had to order the tests a certain way so to be under the radar of the insurance company. But I will be sure to ask.... Thank you for pointing that out! And I'm not sure what lab he uses....

    That is amazing and encouraging news about your sister's friend! What a blessing of a friend your sister is!! I sure wish i could have had a friend like that along the way! Instead, I've been surrounded by more judgmental and apathetic folks. :( Your sister must be a rare gem!! Thanks for sharing that with me! It gives me hope...

    Can you tell me which antibiotics your doctor used and whether they were by I.V. or by mouth? I've read that the longer one has had Lyme without treatment, the less effective the oral antibiotics are, so I.V. is recommended. And did you say you were on abx for 3 years? And did your doctor use anything in addition to the abx, like herbal treatments or anything? Wish you could mention your docs name, but I understand why you can't.

    If you don't mind me asking, what part of the country are you in? I've learned that its harder to be diagnosed in Florida, where I am, because the state keeps claiming that there is no Lyme Disease here.... In spite of statistics that say different! Pure craziness!

    I'm just praying that this doc I'm going to try is really a good LLMD... I've been disappointed so many times over the years with doctors, that I'm trying not to get my hopes up.

    I did go to Vicki's doctor's site, and he does sound like a very good LLMD. Wish I lived in Pennsylvania cause I would certainly give him a try!

    Thanks again for taking the time to answer my questions and give feedback! God bless you!

    Hugs,
    Shel
    [This Message was Edited on 04/28/2013]
  22. Nanie46

    Nanie46 Moderator

    Hi Shel,

    It sounds like your Dr probably is a LLMD if he is trying to stay under the radar.

    I also live in PA. Even so, I had to travel 2 hr each way to my LLMD, but at least there are some here.

    I took only oral antibiotics for 3 yrs, many different ones, in combination. Each LLMD has his/her own preferred combos.

    My LLMD told me that slow and steady wins the race. Do not expect too much too soon, and just keep at it.

    He suggested many different supplements that I also took, changing some along the way. Some that are essential are lots of fish oil (I took at least 5000 mg daily), heavy duty probiotics (for awhile I took 4- 50 Billion caps daily, then after 2 years reduced to 2 caps daily, now to 1 daily), lots of Vit D3.

    I am hoping Dr B updates his guidelines soon since the paper below is from 2008, but that is the latest info.

    You can find recommended supps in Dr B's paper on pages 28-31 :

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


    I get a lot of supps and vits right here at the Prohealth store.

    Just remember that you didn't get to this point in your illness in a couple months, so you won't get better in a couple months either....be patient and optimistic.

    There is a lot of good info on BetterHealthGuy's website. He goes to a lot of conferences and summarizes the info on lyme and other common coinfections and posts it on his site.
  23. Nanie46

    Nanie46 Moderator

    Hi Shel,

    It sounds like your Dr probably is a LLMD if he is trying to stay under the radar.

    I also live in PA. Even so, I had to travel 2 hr each way to my LLMD, but at least there are some here.

    I took only oral antibiotics for 3 yrs, many different ones, in combination. Each LLMD has his/her own preferred combos.

    My LLMD told me that slow and steady wins the race. Do not expect too much too soon, and just keep at it.

    He suggested many different supplements that I also took, changing some along the way. Some that are essential are lots of fish oil (I took at least 5000 mg daily), heavy duty probiotics (for awhile I took 4- 50 Billion caps daily, then after 2 years reduced to 2 caps daily, now to 1 daily), lots of Vit D3.

    I am hoping Dr B updates his guidelines soon since the paper below is from 2008, but that is the latest info.

    You can find recommended supps in Dr B's paper on pages 28-31 :

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


    I get a lot of supps and vits right here at the Prohealth store.

    Just remember that you didn't get to this point in your illness in a couple months, so you won't get better in a couple months either....be patient and optimistic.

    There is a lot of good info on BetterHealthGuy's website. He goes to a lot of conferences and summarizes the info on lyme and other common coinfections and posts it on his site.
  24. Thanks again for all your help and great info!

    I've run into a snag and need to ask you what lab did you use when you were first getting the full battery of tests for Lyme? And how much did it cost? Because this doc I found has 11 different tests he wants to run... BUT because the local lab that he wanted to use is out of my network, its going to cost something like $3000 to get all the tests run... Which of course is out of the question and very upsetting... the doc was shocked to hear that too.

    He doesn't like the lab that is in my network because they are not as good as they should be... especially for Lyme.

    So how did you manage to get yours done without breaking the bank?

    I was hoping to get the bloodwork done today, but now we've hit a roadblock :-(

    Any info you can share on this is greatly appreciated!

    Shel
  25. Thanks again for all your help and great info!

    I've run into a snag and need to ask you what lab did you use when you were first getting the full battery of tests for Lyme? And how much did it cost? Because this doc I found has 11 different tests he wants to run... BUT because the local lab that he wanted to use is out of my network, its going to cost something like $3000 to get all the tests run... Which of course is out of the question and very upsetting... the doc was shocked to hear that too.

    He doesn't like the lab that is in my network because they are not as good as they should be... especially for Lyme.

    So how did you manage to get yours done without breaking the bank?

    I was hoping to get the bloodwork done today, but now we've hit a roadblock :-(

    Any info you can share on this is greatly appreciated!

    Shel
  26. Nanie46

    Nanie46 Moderator

    Hi Shel,

    First I had a western blot IgG and IgM done through Igenex lab in CA. At the time the cost was $200 (now I think it's somewhere around $260).

    Customer service at Igenex is good at answering any questions. They send free test kits with prepaid mailing labels, but you have to know what tests the Dr is ordering so they have all the right blood collection tubes included. Does your Dr use Igenex? If so, he would probably already have the kits.

    Many LLMD's do use Igenex. Igenex does accept Medicare but not other insurances.

    Then I found a LLMD and he ordered: B Henselae IgM and IgG (Bartonella), HGE Panel (Human Granulocytic Ehrlichiosis), HME Panel (Human Monocytic Ehrlichiosis), B Microti IgM and IgG (Babesiosis), and Babesia FISH through Igenex. That was in Feb 2009. I forget the exact cost, but I think it was under $1000....it's been too long to remember and the prices have changed.

    Then he ordered some other labs through a regular hospital lab (Quest). Those were partially covered according to my plan: I had Rocky Mt Spotted Fever IgG and IgM, ANA, and a bunch of other labs.
    [This Message was Edited on 04/30/2013]
  27. Nanie46

    Nanie46 Moderator

    Hi Shel,

    First I had a western blot IgG and IgM done through Igenex lab in CA. At the time the cost was $200 (now I think it's somewhere around $260).

    Customer service at Igenex is good at answering any questions. They send free test kits with prepaid mailing labels, but you have to know what tests the Dr is ordering so they have all the right blood collection tubes included. Does your Dr use Igenex? If so, he would probably already have the kits.

    Many LLMD's do use Igenex. Igenex does accept Medicare but not other insurances.

    Then I found a LLMD and he ordered: B Henselae IgM and IgG (Bartonella), HGE Panel (Human Granulocytic Ehrlichiosis), HME Panel (Human Monocytic Ehrlichiosis), B Microti IgM and IgG (Babesiosis), and Babesia FISH through Igenex. That was in Feb 2009. I forget the exact cost, but I think it was under $1000....it's been too long to remember and the prices have changed.

    Then he ordered some other labs through a regular hospital lab (Quest). Those were partially covered according to my plan: I had Rocky Mt Spotted Fever IgG and IgM, ANA, and a bunch of other labs.
    [This Message was Edited on 04/30/2013]
  28. I haven't heard back on the western blot yet... The lab automatically sent my blood for that test when the first Lyme test came back positive. But because the western blot is so unreliable, with many false negatives, don't think it will matter much.

    But I'm not on Medicare, so it sounds like the Igenex labs wouldn't probably be affordable for me either. My network lab is Quest, but this doctor wants to know which lab they use first so that MAYBE i will be able to get at least SOME of the tests run through them... And then maybe pay for the others, which will hopefully not be that many.

    Please pray with me that we can get this worked out... My health has been steadily deteriorating and I feel like I have no time to lose.

    Thanks again for all your help, Nanie46! And prayers too!

    Blessings,
    Shel
  29. I haven't heard back on the western blot yet... The lab automatically sent my blood for that test when the first Lyme test came back positive. But because the western blot is so unreliable, with many false negatives, don't think it will matter much.

    But I'm not on Medicare, so it sounds like the Igenex labs wouldn't probably be affordable for me either. My network lab is Quest, but this doctor wants to know which lab they use first so that MAYBE i will be able to get at least SOME of the tests run through them... And then maybe pay for the others, which will hopefully not be that many.

    Please pray with me that we can get this worked out... My health has been steadily deteriorating and I feel like I have no time to lose.

    Thanks again for all your help, Nanie46! And prayers too!

    Blessings,
    Shel
  30. Nanie46

    Nanie46 Moderator

    You're welcome, and I will pray for you for sure.

    A good LLMD knows that lab tests are just a small part of making a Lyme diagnosis.

    Your history, symptoms and exam are vitally important.

  31. Nanie46

    Nanie46 Moderator

    You're welcome, and I will pray for you for sure.

    A good LLMD knows that lab tests are just a small part of making a Lyme diagnosis.

    Your history, symptoms and exam are vitally important.

  32. Nanie46

    Nanie46 Moderator

    Hi TigerLilea,

    My LLMD used many different antibiotic combos and changed them from time to time.

    The antibiotic that helped me the most was lots of doxycycline, but everyone is different depending on many factors.

    Some suggestions would be: she could find a LLMD through lymenet dot org's Seeking a Doctor board, or she could research some of the alternative treatments such as the Cowden protocol, the Buhner protocol and others.

    Some people use Rife machines, photon therapy, Salt/C protocol, etc.

    Stephen Buhner (a master herbalist) has a website called Healing Lyme.

    The Cowden protocol is easy to find online also.

    There are some books that may be helpful such as "The Top Ten Lyme Disease Treatments" by Bryan Rosner.

    She could try to find a Lyme literate Naturopathic Dr or Lyme literate Integrative Medicine Dr. She may be able to get a suggestion of one on lymenet's Seeking a Doctor board, if she posts specifically what she wants and what state she is looking for a Dr in.

    If there is a Lyme disease support group in her area, they may be able to suggest a LLMD/LLND.

    Most Dr's are not Lyme literate even if they say they treat lyme disease. You have to do your homework and make sure that they believe in the effectiveness of long-term treatment and believe that chronic lyme disease exists.

    There is a ton of information about treatments, and summaries of various conferences on Lyme disease on BetterHeathGuy's site.

    If she gets online, she could check out lymenet's Medical Questions board, where she could ask any questions she has. There are lots of helpful people there who are knowledgeable.

    It is helpful to go gluten, dairy, sugar and soy free if she is not already.

    It helped me a lot to use bioidentical hormones to balance my out-of-whack hormones.

    I hope she finds someone that can help her.
  33. TigerLilea

    TigerLilea Member

    Thank you, Nanie, and sorry I couldn't remember your name earlier. I'll pass your information along. Even though her hormones are definitely out of whack, she won't be able to do the bioidentical hormones as she has just gone through radiation for breast cancer and is now on Tamoxifen for the next five years. She has a pretty clean diet as her son has allergies so the whole family eats the same diet to make it easier at meal times. You've given her a lot to research and hopefully there is something there that will be helpful to her. Thanks again!!
  34. TigerLilea

    TigerLilea Member

    Nanie, my friend says thank you very much for all of your info. It turns out that she actually has an appointment in September to see Dr. Cowden so she was really happy to see you mention the Cowden protocol. It makes her more confident that she made the right choice when picking a doctor. Thanks again!
  35. Nanie46

    Nanie46 Moderator

    You're very welcome!!

    I wish her the best.

    There is a summary of some of the info Dr Cowden presented at the "Conquering Incurable Diseases Conference 2013", on BetterHealthGuy's site.

    I bet there is a lot more summarized info from Dr C on that site from other conferences too.