Lyme Diagnosis, Opinions

Discussion in 'Fibromyalgia Main Forum' started by wrthster, Feb 21, 2007.

  1. wrthster

    wrthster New Member

    I was recently diagnosed with Lyme by an experienced LLMD. Prior to that it was CFS/FM by the Rheumatologists. If anyone has experience with Lyme here are my test results from Quest. I wanted to do this first, since Igenex charges a fortune and does not work with any insurance. Before I undergoe the treatment, which is heavy duty I am very open to suggestions.

    RESULTS

    BAND 41 REACTIVE BOTH IGM AND IGG (SPECIFIC FOR BORRELLIA)
    BAND 39 REACTIVE ONLY IGG (MAJOR PROTEIN FOR BB FLAGELIN, SPECIFIC FOR BB
    BAND 58 REACTIVE ONLY IGG (UNKNOWN)

    FLAGELLIN PROTEINS CAN INCLUDE A LOT OF DIFFERNET PATHOGENS
  2. wrthster

    wrthster New Member

    First MCOURNTNEY,

    That is very intersted, you and I are about the same age, I am 37 and have had problems since before my early teens, over coarse not close to this degree. With respect to the IGG, it is Intravenous not the shots. The doc says the shots are not available, all the soldiers in Iraq are using them. Who knows! But I am not paying for the IGG except the copay which is about $200 per month.

    If you have insurance, put in my name under search and several postings should come up on IGG/Gamma Globulin. If you can find a doctor, I am willing to bit you will meet the criteria for the insurance to pay for it. Read my posts carefully, and than see if you can find a good Immunologist or Infectious Disease Doctor who does IVIG in their office. I think many CFS/Lyme patients probably could benefit from this, it just has to be proven to the insurance company not based on a CFS or Lyme diagnosis. It must be based on some type of immune deficiency. I think almost every Lyme or CFS patient probably has one. Best of luck with that, let me know if you need help or have any more questions. I hate to see people suffer.

    The doc wants to do IV antibiotics, I am not to happy with that. I have had to use antibiotics way to many times, and I think as much good as they do they can cause a lot of harm especially because I have severe mold allergy. So I do not know. I will start with the IVIG, and than see where I go from there. I am also trying cholestramine and Tindamax for now. With repect to Ampligen, I would be very cautious, read the post I found below.

    Thank you twinofdar for your imput, I would tend to agree if that came back from Quest it is very unusual and would be a good marker. My questioning comes becaue I wonder if the bands could be picking up on another flagellum type organism? There are a lot of them.

    So this stuff gets very confusing. My LLMD of coarse if convinced it is LYME. But he is an LLMD, so of coarse that is going to be his diagnosis. THe Rheumatologists think it is CFS/FM with Reactive ARthritis. I am more inclined to agree with the LLMD, but I still think the puzzle it not complete.

    I just sent away samples to a Parasitology Lab in Arizona. I have a funny feeling they may shed some light on all of this. Finally, I think before I would agree to any antibiotic protocol, I would ask the doctor to run the test again through quest, a PCR through IMD Labs. Igenex even though they are the best, are way to expensive and do not take insurance which I think is disgusting. ONly use them as a last resort.

    AMPLIGEN POST

    Ampligen..Info from 1st trial user....PLEASE READ 02/20/07 10:56 PM

    I was surfing the internet for info on Ampligen as it sounds so promising.

    However, I came across this article from someone who was in the first trial for the drug & took it for 5 years.

    It was rather off putting! (written in 2000).
    Still I thought it worth posting as i'm not sure if it's been posted before:
    ----------------------------------------------
    This is an important open letter from the very first patient taking Ampligen:


    The incorrect folklore around my experience with Ampligen is frustrating. I have tried to keep a low profile but I will explain to you why I am now speaking out. I am trying to clear things up -- and hopefully still keep that low profile.

    I have been told numerous times about the exaggerations by Hemispherx and some of the P.I.’s (principal investigators) regarding my “successful recovery” and I chose to ignore them and spend my time getting well -- not getting even.

    However, if someone calls me and asks me a direct question concerning the drug -- they will get an honest and direct answer. That is my style. I am really concerned about the false impression they are giving about my five years on Ampligen. It incorrectly influences people who are considering hocking their life’s savings and their health by what they are told about me and what Ampligen is capable of accomplishing.

    After 5 years on the drug (400 mgs 3xs a week) and a lot of side effects -- plus not getting well -- no one should know better than I do -- what this drug can and can’t do.

    The last straw was when a friend of mine sent me a copy of the U.S. patent (number 5,958,718) which was filed by Hemispherx and granted by the U.S. Patent Office. In their application Hemispherx claimed patient 00 (me) was a professional golfer and was now “leading a normal life fully self-sufficient.” Seeing as I had an 18 handicap back many years ago when I was able to play golf (not bad for a sweet little old lady), I would hardly qualify for professional golfer status. Professional golfer’s handicaps are 0 -- thus no handicap is used when they play in tournaments. Not to mention they play for money.

    As far as "leading a normal life and am self-sufficient" -- I should be so lucky. Ask my husband, who cares for me (even though he has Parkinson’s Disease), how correct that statement is. Those are bold face lies and it bothers me.

    We are seriously considering going to our lawyer ( who is a very good one, I may add ) and ask him to write a letter to the FDA and the U.S. Patent Office telling them the truth. I doubt if we would sue at this point — just inform both agencies...but if I hear any more of that sort of thing -- they had best watch out!! Lying to the government is not one of my strong points. U.S. Senator Pete Domenici (R-N.M.) was very instrumental originally — in 1988 — helping me to obtain Ampligen on a compassionate care basis. He is a very powerful senator and one of those rare politicians who is extremely honest and keeps a very personal relationship with his constituents. In fact, I may go to him with this issue. I respect his honesty and excellent reputation so he deserves the truth and so does the FDA and Patent Office.

    Now -- let’s see if I can answer your questions. Does Hemispherx, FDA, Dr. Peterson, or Dr. Levine, etc. --- have my correct address ---- yes, absolutely --- and the same for most of the others. In fact, Dr. Peterson wrote to me several years ago and offered me the opportunity to go back on the drug. My answer was a resounding and emphatic ---- NO!!

    To be honest with you -- if I had it to do over again, I would not go on it the first time around knowing what I do today. I was astounded when I reported the heart problems to the doctor who was my principal investigator -- and his answer was “Ampligen couldn’t have caused that” and that was it. How would he know, and shouldn’t it have been reported anyway?

    At this point NO ONE in the original study with whom I am acquainted -- or those in the following double blind placebo study — is well. (The double blind placebo study is jokingly called the "double cross" placebo study as Hem did not keep their word.)

    I was on the drug the longest. NOT ONE, including myself, of the participants I know (and I exchange info on a regular basis with MANY OF THE ORIGINAL RECIPIENTS) has been contacted in ANY way by Hem or the FDA, etc. Scary, isn’t it?

    I know one of the first 10 Ampligen patients has Mantle Cell Lymphoma, and a second person who was one of the original 15 has stage 4 cancer. Another of the first 10 has found a lump in her breast and is seeing an oncologist next week. Two of the first 10 have committed suicide.

    I had a hemangioma tumor removed from my liver in November, plus all the heart complications. Nothing has been documented. Seeing as many of us were on the drug 4 or 5 years -- I find this disinterest amazingly careless, or maybe they don’t want to know or admit to developing problems. Who knows -- but is this how all drugs are approved??? I hope not.

    You would think that would be of interest to the FDA seeing as we were all on Ampligen for years. It seems logical we would be of great interest to those people responsible for both the safety and efficacy of this drug, such as Dr. Levine. As far as the arrhythmias and mitral valve prolapse --- no, I did not have either before I took Ampligen. They were diagnosed by the Johns Hopkins cardiologists, after I was off Ampligen, who found I also had NMH. I was treated by a cardiologist (electrophysiologist) in Albuquerque for all those complications.

    We have the arrhythmias calmed down now, but it took several years. You asked about intolerance for alcohol -- yes, I have always been intolerant. My husband kiddingly use to called me a “cheap date” because I never ordered an alcoholic drink while we were dating. With all my medical bills now, I don’t fit in the category of a cheap date anymore.

    You are welcome to share this information with anyone. It is the simple truth, and I think that truth is needed in this vast web of inappropriate information regarding Ampligen.

    From the CFS BULLETIN
    January/February 2000




    Ampligen..Info from 1st trial user....PLEASE READ 02/20/07 10:56 PM

    I was surfing the internet for info on Ampligen as it sounds so promising.

    However, I came across this article from someone who was in the first trial for the drug & took it for 5 years.

    It was rather off putting! (written in 2000).
    Still I thought it worth posting as i'm not sure if it's been posted before:
    ----------------------------------------------
    This is an important open letter from the very first patient taking Ampligen:


    The incorrect folklore around my experience with Ampligen is frustrating. I have tried to keep a low profile but I will explain to you why I am now speaking out. I am trying to clear things up -- and hopefully still keep that low profile.

    I have been told numerous times about the exaggerations by Hemispherx and some of the P.I.’s (principal investigators) regarding my “successful recovery” and I chose to ignore them and spend my time getting well -- not getting even.

    However, if someone calls me and asks me a direct question concerning the drug -- they will get an honest and direct answer. That is my style. I am really concerned about the false impression they are giving about my five years on Ampligen. It incorrectly influences people who are considering hocking their life’s savings and their health by what they are told about me and what Ampligen is capable of accomplishing.

    After 5 years on the drug (400 mgs 3xs a week) and a lot of side effects -- plus not getting well -- no one should know better than I do -- what this drug can and can’t do.

    The last straw was when a friend of mine sent me a copy of the U.S. patent (number 5,958,718) which was filed by Hemispherx and granted by the U.S. Patent Office. In their application Hemispherx claimed patient 00 (me) was a professional golfer and was now “leading a normal life fully self-sufficient.” Seeing as I had an 18 handicap back many years ago when I was able to play golf (not bad for a sweet little old lady), I would hardly qualify for professional golfer status. Professional golfer’s handicaps are 0 -- thus no handicap is used when they play in tournaments. Not to mention they play for money.

    As far as "leading a normal life and am self-sufficient" -- I should be so lucky. Ask my husband, who cares for me (even though he has Parkinson’s Disease), how correct that statement is. Those are bold face lies and it bothers me.

    We are seriously considering going to our lawyer ( who is a very good one, I may add ) and ask him to write a letter to the FDA and the U.S. Patent Office telling them the truth. I doubt if we would sue at this point — just inform both agencies...but if I hear any more of that sort of thing -- they had best watch out!! Lying to the government is not one of my strong points. U.S. Senator Pete Domenici (R-N.M.) was very instrumental originally — in 1988 — helping me to obtain Ampligen on a compassionate care basis. He is a very powerful senator and one of those rare politicians who is extremely honest and keeps a very personal relationship with his constituents. In fact, I may go to him with this issue. I respect his honesty and excellent reputation so he deserves the truth and so does the FDA and Patent Office.

    Now -- let’s see if I can answer your questions. Does Hemispherx, FDA, Dr. Peterson, or Dr. Levine, etc. --- have my correct address ---- yes, absolutely --- and the same for most of the others. In fact, Dr. Peterson wrote to me several years ago and offered me the opportunity to go back on the drug. My answer was a resounding and emphatic ---- NO!!

    To be honest with you -- if I had it to do over again, I would not go on it the first time around knowing what I do today. I was astounded when I reported the heart problems to the doctor who was my principal investigator -- and his answer was “Ampligen couldn’t have caused that” and that was it. How would he know, and shouldn’t it have been reported anyway?

    At this point NO ONE in the original study with whom I am acquainted -- or those in the following double blind placebo study — is well. (The double blind placebo study is jokingly called the "double cross" placebo study as Hem did not keep their word.)

    I was on the drug the longest. NOT ONE, including myself, of the participants I know (and I exchange info on a regular basis with MANY OF THE ORIGINAL RECIPIENTS) has been contacted in ANY way by Hem or the FDA, etc. Scary, isn’t it?

    I know one of the first 10 Ampligen patients has Mantle Cell Lymphoma, and a second person who was one of the original 15 has stage 4 cancer. Another of the first 10 has found a lump in her breast and is seeing an oncologist next week. Two of the first 10 have committed suicide.

    I had a hemangioma tumor removed from my liver in November, plus all the heart complications. Nothing has been documented. Seeing as many of us were on the drug 4 or 5 years -- I find this disinterest amazingly careless, or maybe they don’t want to know or admit to developing problems. Who knows -- but is this how all drugs are approved??? I hope not.

    You would think that would be of interest to the FDA seeing as we were all on Ampligen for years. It seems logical we would be of great interest to those people responsible for both the safety and efficacy of this drug, such as Dr. Levine. As far as the arrhythmias and mitral valve prolapse --- no, I did not have either before I took Ampligen. They were diagnosed by the Johns Hopkins cardiologists, after I was off Ampligen, who found I also had NMH. I was treated by a cardiologist (electrophysiologist) in Albuquerque for all those complications.

    We have the arrhythmias calmed down now, but it took several years. You asked about intolerance for alcohol -- yes, I have always been intolerant. My husband kiddingly use to called me a “cheap date” because I never ordered an alcoholic drink while we were dating. With all my medical bills now, I don’t fit in the category of a cheap date anymore.

    You are welcome to share this information with anyone. It is the simple truth, and I think that truth is needed in this vast web of inappropriate information regarding Ampligen.

    From the CFS BULLETIN
    January/February 2000


  3. clerty

    clerty New Member

    Hi

    How do they think you caught it?
  4. monicaz49

    monicaz49 New Member

    i cant evaluate your test results but i have cfs and got 2 negative Elisa tests. Positive igenex. Its almost more confusing than before i tested cause i wonder on the reliability of a lab that no doctor trusts.
  5. wrthster

    wrthster New Member

    I have no idea how I caught it, the only thing I can guess is maybe because I grew up and spent a good part of my life in New York. Or, maybe it is not Lyme, but another Flagellum organism causing the problem, like one poster said I am more confused now than before!

    Also, MCCourtney that is really strange, I asked my doctor about the Gamma Globulin shots instead of the IV, he told me it was not available because all the soldiers were using it in Iraq? You mean you can get the shots instead of intravenous? As far as the $150 per shot, even if you find an Infectious Disease Doctor, and insurance approves it, most likely there will be a co-pay. But it really depends upon how sick you are and how many infections you suffer from. If you get a lot of infections like I do, I don't know of anything better out there.
  6. wrthster

    wrthster New Member

    Twinofdar,

    I thank you very much for your opinion. Sounds like you have done a lot of research on Lyme. I was so convinced and researched the past four years CFS/FM and was also diagnosed with Reiter's syndrome that this has been very difficult to accept. I am also curious if you have any other suggestions other than IV anitbiotics for the LYME? I am very opposed to them and feel there is more going on than just the Lyme. I have even read of one LLMD using IV Gamma Globulin to treat it. I am currently on that, just started. Checked out hyperbariac, you have to be a millionaire. Any treatment suggestions are gladly welcomed. I do not have the energy anymore to now devot four years of research into treating Lyme. Have been on Lymenet and I think the layout of the board is terrible. I think this site is much better. One other thing, the reason I also have a lot of trouble with the Lyme diagnosis, is my main downful started senior year of college in the urinary track. I was in a monogomous relationship at the time. The treated it with antibiotics for a month, no luck and than never the same again. Ten years later it was diagnosed at Reiter's syndrome or Reactive Arthritis. That is why I find it very strange that this is all do to Lyme. No rash, no fevers, nothing like that. Started like I said all in the urogenitoury track when I was with my girlfriend senior year of college.

    MCCOURTNEY

    I to do not know of many who can trace problems back to childhood. I would definately like to exchange thoughts and ideas with you. I don't know how to do that here, I usually only post. Can you exchange emails or how does that work?
  7. kellyann

    kellyann New Member

    What exactly is in the IGG injections? I am on Bicillin LA injections which are long acting penicillin injections. I have never heard of IGG injections.

    Any info you can pass on I will be so gratefull for!



    Your friend,
    Kellyann
  8. wrthster

    wrthster New Member

    IGG injections are Immunoglobin Injections. Most of the time it is refered to as Gamma Globulin. It can be given by injection or intravenous. Now adays, most docs give it buy IV. Search under my user name, and look at my posts. There is a lot of info on IVIG Gamma Globulin which should help. It is for people who's immune systems do not work properly like most on this board. Post back if you need more info.
  9. wrthster

    wrthster New Member

    Thanks for the info. Want to ask you, my doc wants to go direct to the IV. I am not in a wheelchair, and I don't like it. What do you think I should do?

    Also, can Lyme effect and reak havock on one's digestive system? Have you ever read this anywhere? It seems every time I eat I get worse (I know it sounds strange.) Thanks very much.
  10. wrthster

    wrthster New Member

    Thanks, I will look for the post.
  11. wrthster

    wrthster New Member

    Thanks very much for the info. I see him next week, but I have other issues with him and don't know if I will stick with him. I am not going to get into that now, but he has really disappointed me in the past few weeks.

    Also, he is giving me IVIG Gamma Globulin right now. I don't want to try to much at the same time, and truthfully my body can't handle it. Also, I think the antibiotics are brutal on your system. I have taken them on and off so long they have done so much destruction. I consider it a double edged sword.

    I have heard of one Lyme doc in Conneticut who uses the IVIG for treatment of Lyme. I also have to deal with the fungal issues, and we know the antibiotics will make that a lot worse. So where to begin, my brain is fried!!!
  12. twitcher

    twitcher New Member

    You don't have to take IV treatment for lyme. You can take oral antibiotics. I've never heard of IGG treatment for lyme. Or did I misunderstand something I read in the posts? I've done a lot of research on lyme myself. I think it would be worth a try. It may be the answer to all your problems.
  13. wrthster

    wrthster New Member

    Yes, I had never heard of the IVIG for Lyme either. I came accross only one article about an LLMD in Conneticut who does this. However, my IGG levels are low, so that is why the insurance is paying.

    But my feeling is, IGG treatment has been around a very long time. It takes other people's antibodies to supposedly boost your immune system to fight. So it kind of makes sense that it could potentially help a lot of problems.

    But I will be on to doc number two hopefully soon. I agree, because band 41 and 39 from Quest are positive it is more than likely, but I am not convinced that is all that is going on. But if someone were willing to use oral and monitor the fungal issues carefully, I would try that route. But as all of you know, finding good docs for CFS or Lyme is very difficult.

    This is like doctor number 50, and I am telling you it is ridiculous at this point. And it is a shame this guy turned out to be a real jerk, because he was the first one I found that I did not have to tell him what to do or what tests to order which was a really nice change of pace. Thank you all for your comments and advice. This is really a great group of people.