I started educating my PCP about lyme at my yearly appt today

Discussion in 'Fibromyalgia Main Forum' started by Nanie46, Dec 31, 2008.

  1. Nanie46

    Nanie46 Moderator


    I prepared for this yearly appt for weeks. Last year I asked him to sign an order for an Igenex lyme Western Blot and he told me I was wasting my money and all I needed was a lyme screen. Of course that was negative, and he wouldn't go any further.

    This year I began my lyme research about 2 or 3 months ago. I actually already found a Dr to order the Igenex test (my FM Dr in FL who does phone consults). I'll be having blood drawn for that on Mon, Jan 5.

    I wanted my PCP to understand that alot of the symptoms for FM, CFS, MS, etc and Lyme overlap. I wanted him to know that current lab testing is flawed when not done at a good reference lab like Igenex, and that the CDC criteria is flawed and outdated and does not take all bands into consideration. I just wanted him to see that lyme has never been ruled out for me or really even given any consideration.

    At first my PCP seemed like he was brushing off what I was saying, but I had alot of scientific info commited to memory from Dr Burrascano's paper and the ILADS Guidelines. Finally I could see that he seemed to mellow and said that he would read any information that I could provide him.

    That's when I whipped out my folder of lyme information that I had printed for him and I had all the important parts highlighted!

    I gave him a copy of Dr Burrascano's paper which he said he had never read. I also gave him the ILADS Guidelines, plus Dr Bleiweiss's essay "When to Suspect Lyme", the CDC page that states that their case definition of lyme is not intended to be used in clinical diagnosis, the Townsend Letter for Doctors and Patients:"Comparison of specificity and sensitivity of Igenex Western Blots using Igenex criteria and CDC criteria for a positive Western Blot", the Public Health Alert page by Dr James Schaller called "Western Blots Made Easy", and some info from Dr Charles Crist's website.

    In addition I threw in some info from Dr Jacob Teitelbaum regarding treating high viral IgG titers with antivirals. My PCP thought it was ridiculous last year when I told him Dr Dantini in FL had prescribed antivirals for me. I told him that he is the Dr who ordered the Igenex test for me...and he said, "Oh, that Dr who never saw you"....

    That's when I told him "He is the Dr under whose care I improved 50-70% last year taking antiviral meds and doing an elimination diet."....I since have gotten worse since Feb 2008 with severe neck and shoulder stiffness and pain.

    Anyways, it went as well as I expected. I didn't go in with too many expectations. I was just happy that he agreed to read the information. I don't think he expected me to instantly present him with all that lyme information. He said he would give me some info too and he did.

    (I read it when I got home and it is all about the guidelines used by the IDSA which are considered to be outdated and flawed by the ILADS and Dr Burrascano. It wasn't very good information at all.).....anyways ....

    He seemed a little flustered and at that point closed his laptop and proceeded to go towards the door to leave. I even had to say to him before he made a quick exit, "So do I need any routine labwork...ie: cholesterol, etc?" He said "Oh, yes, I'll take a look and order it". Then he left.

    I found that the best way to approach any Dr who is "underinformed" is to go very informed and have all the best info printed out for him. It's hard to argue with papers written by experts in the field.

    I told him that I'm not saying I have lyme, or don't have lyme, but that I need to investigate it further and I will never stop my quest until I get better. I told him I don't want to take a bunch of drugs to cover up symptoms, I just want to get well.

    He told me he would be glad to take a look at the results when I get them from Igenex.

    So....everybody, don't give up trying to educate your Dr's....Dr's think they know everything and we all know they don't. Even if I don't have lyme, maybe that info will help him diagnose someone else properly.

    Happy New Year to everyone!!
  2. victoria

    victoria New Member

    Most doctors definitely do not like it if a patient knows more about a subject than they do, but hopefully he will actually read the info. You never know, he may see the light... not only about lyme but all the other infections that can hide out. like mycoplasma, CPn, etc. I find it surreal/unreal that so many doctors do not consider these types of infections that can hide out.

    I hope he does do a turn-around... but keep your options open to finding a knowledgeable doctor if you need to. Sounds like you've been doing your homework, congratulations!

    all the best,
  3. gapsych

    gapsych New Member

    While I certainly think it is great to givee your doctor the information. Here are a few thoughts.

    I wonder if doctor's are really underinformed but instead they consider the reputation of ILADS and how outlandish SOME of their claims are.

    It will be interesting to see the new guidelines by the IDSA.

    I would love to know how many people go to LLMD's and don't get a diagnosis of Lyme.

    I would recommend an infectious disease doctor. I think they are more open minded and are up on the latest literature. If you get a diagnosis of Lyme from them you can be sure that you have it or some of the other infections that go with it.

    The anti virals are showing dismal results for most people.

    Antibiotics can be dangerous as a treatment when you do not need them.

    But please keep in mind that this is my opinion and that you are the one who has to make the ultimate choice.

    I do not want to turn this into a debate about Lyme. Just some thoughts I had.

    Good luck.


    [This Message was Edited on 01/01/2009]
  4. 3gs

    3gs New Member

    thanks for info. can i look these up on computer as you listed them?

    My pcp is clueless. had him test me for Lyme and it came back equivol.sugessted western blot be done.

    Rhemy I saw on 3oth said alot of crap about fibro and Lyme(said I didn't have it cuz I could not remember bite or rash). Told her to look at labs. almost got her to give me antibiotics.
    This time I want to to take paper work.

  5. Nanie46

    Nanie46 Moderator


    Yes, you should be able to look these up on the computer as listed....you can find some on the ILADS.org site, probably all of them if you Google the titles and names, and some are on the Public Health Alert site.

    If you have trouble finding something, just leave a message for me and I wil try to help you further.
  6. bunnyfluff

    bunnyfluff Member

    Happy New Year, and hopefully, good health this year as well.

    I'm glad for your efforts, and hope you can help educate many. I'm not sure who said that they were curious how many patients were told they did not have lyme by a LLMD, but my LLMD has told me he turns away 1/2 of all who are tested.

    The problems with testing are that there are so many people that never know they were bitten to begin with, so they go untreated and unknown until it gets so bad it's do or die. I feel badly for the number that will never get an accurate test done, but I am happy for all that do.

    My condition has improved 10-fold over the course of the past year. I have started 2 new businesses, enjoy each and every day, and when I look back before my Lyme was found and I was bedridden, there is no comparison in my quality of life.

    God Bless all,

  7. Nanie46

    Nanie46 Moderator


    I am so glad to hear that you have improved so much recently. I have had FM for 22 years, so I would be so ecstatic if I could resolve the pain, stiffness, insomnia, etc.

    How did you finally get a correct lyme diagnosis? Did you have an Igenex Western Blot? I see that you have a LLMD. Did he make a clinical diagnosis based just on your history and symptoms?

    It is stories like yours that give me continued hope that we can get well...we just have to be relentless in our search for all the causes of our illness.

    Continued improved health to you in 2009!
  8. victoria

    victoria New Member

    my son came up positive to the CDC's tracking/surveillance requirements 2X in 1 year (IGenex), a fairly rare result I believe, but before he even got the results back the first time, his LLMD put him on a trial of abx; he was herxing within 2 days, and it was a very bonafide herx. His pain problems have improved, but so far the neuro symptoms have not changed much unfortunately.

    I have been told that for those who have had it longer (he had it at least 5 years based on symptoms) it takes longer to get well... but to have your own LLMD be discouraged is rather depressing. I do think other methods besides abx may be necessary, as there are those who cannot take them or they do not do the whole job, but I have read of many success stories using other protocols.

    Unfortunately it is a brave new world in combatting Lyme & Co/co-infections... like with CFIDS/FM dx's, there's no magic bullet and no one protocol helps everyone. I really think it's because there's likely other sneaky infections that are hard to tease out, much less treat.

    all the best,

  9. bunnyfluff

    bunnyfluff Member

    I crashed really badly towards the end of 2006. I had Epstein Barr active for more than 6 months straight. Antivirals did not do much good, probably b/c it wasn't a virus, it was a bacterial infection (lyme!).

    I went out on FMLA- I had an infection in the lining of my heart to boot, and on the insistance of a friend, went to a Naturopath and D.O. to get soe help. My regular Dr had suspected Lyme (he is quite a knowledgable guy), but the test he performed came back neg. I think it was Elisa.

    The Naturopath did a thing called 'darkfield' where you look at your blood sample live on a slide on a computer screen. And there it was- big as day- a spirochette! I had some issues with mold overgrowth as well.

    I did natural treatments for quite awhile- Samento, Rife, etc. and gained quite a bit of ground. I still felt like I had a long way to go- but remember I had originally been dx'd with FMS/CFS about 8 yrs prior. I just never bought into the fact that I could not recover.

    So, I sought out a LLMD to see what else would be available to me in treatments. Great to say, my insurance pays for almost all of it- I do pay a little higher co-pay b/c he is technically out of network, and I did pay for Igenex, although I probably could have been re-imbursed for that as well.

    My igenex came back with quite a few bands showing I had this for quite some time- which I already knew- but hard to say when or where I was bitten. A rash I had @ 20 that was called 'ringworm' even though I didn't have a pet could have been it, but it has been so long ago I couldn't tell you for sure.

    Anyway- do not give up hope! Even the CDC says it should be a clinical Dx- so don't let naysayers discourage you from seeking answers or treatment if you think anything can help you.

    I wish you the best,
  10. munch1958

    munch1958 Member

    I hope you get some answers on your Igenex WB. Please post your WB results when you get them.

    Most of all, remember this is not "All in your head." Since the IDSA doctors issued their flawed guidelines they'd all have us believe that it's "the stress of daily living" which is total BS. Since they can't or won't figure out what we have they blame us and refer us to head doctors. We can't all be headcases. Did we transmit the same exact symptoms to each other via our minds or internet telekinesis?

    When the IDSA took their guidelines to the AAN or American Academy of Neurology and had that association sign off on them blindly, they commited a crime of racketeering. The CT Attorney General (so far) is the only one with the moral outrage to take on the IDSA criminals. Since over 20% of the CT population is infected with Lyme it makes sense that he'd take an active stand. That translates to maybe 5 families on one city block having the illness!

    As far as Psychiatry goes, it's not based on anything scientific. It's all a bunch of speculation and mumbo jumbo with no basis in fact. The results can't even be scientifically duplicated. Any scientifically valid method or test will have the same results on any two pieces of equipment. There is no equipment in psychiatry. Any two therapists will have a different opinon on what is wrong with someone. It all reminds me of the middle ages when physicians thought illness was caused by "humors."

    The IDSA criminals have a fantastic set up. The testing is faulty as ELISA misses 85% of those tested. The definition of Lyme was changed at the Dearborn Conference to only include those with late stage Lyme or arthritis of the knee. Only those people with enough antibodies to pass the ELISA test will have a big giant swollen joint. Everyone else will test negative. Then you get a referral to a shrink.

    It's really a matter of figuring out which hormone deficiencies you have and which infections you have and then treating the ones you have. The top CFS and FM doctor's treatment is merging with the Lyme docs if the 2009 Peer Observation Physicians' Roundtable is any indication:


    Most of these chronic infections have a 1..2 punch. They cause numerous permanent changes to the hormone systems of the body especially the hypothalamus causing most people to become deficient in adrenal, thryoid, and pituitary hormones.

    Lyme is notorious for causing homonal disruption as do the other pathogens. It is a pathogen and we as humans once bitten by spiders, mosquitoes, chiggers, ticks, (anything that draws blood) become the hosts. Spirochetes want to survive in us so they do all sorts of things to disable our immune systems so we don't destroy them.

    Remember, if there are any positive or IND bands showing up on any Lyme test most likely the person has Lyme. There should be NO positives at all on the test. Watch for anything showing up at band 39 because this indicates an older infection.

    The Osp A portion of the Lyme spirochete is a Pam-3-Cys which is similiar to the AIDS molecule. There are many immune supression effects of the Pam-3-Cys which is why we can't keep infections in check. Most of us have the Lyme soup of Borrelia, Babesia, Bartonella, CPN, EBV, CMV, HHV6, candida, mycoplasmas, etc.

    These Pam3Cys triacyl lipopeptides have the effect of turning off the immune
    system, adhering to erythrocytes and producing irregularly formed lymphocytes,
    or result in immune incompetence, exacerbation of latent infections. The irregularly formed blood cells is one reason why we have constant fatigue.

    The people that were innoculated with the Lymerix vaccine developed all of the symptoms of Lyme but without the spirochete. That's where the Pam3Cys was discovered and the immune suppressive outcomes ignored by the IDSA criminals.

    Also be aware they play a game with the DNA primers when checking humans and ticks for spirochetes. Humans never have them in their studies on the outcomes of Abx therapy but the ticks always do because they are using different portions of DNA of the spirochete.

    There has been no testing of CFS and FM patients to determine the bio-markers of disease. So we can't really compare to those who have Lyme at present. By biomarkers I'm talking about cytokines -- IL1b, IL4, IL6, IL8, IL10, IL12, plus TNFa, and IFNy.

    The people who have the worst cases of Lyme are not capable of making antibodies. Do not be discouraged if you have very few or none. The IDSA crooks themselves said this before the Bayh-Dole Act was passed in 1980.

    This act allowed universities and researchers to gain profit on their discoveries by allowing patents, test kits and vaccines for the first time in our history. After this act was passed, researchers stopped sharing information with each other then these docs did a 180 degree swivel contridadicting everything they previously said.

    Until there is an accurate direct test for the bacteria vs a test for antibodies (what we have now) we'll never know who has Lyme and who doesn't. All we can do is a trial of Abx to see if we have improvement.

    As for myself, I no longer have FM pain or fatigue of any kind. My asthma is gone. My costrochondritis is gone. No more TMJ either. No more migraines or headaches. Lyme is a brain infection similliar to relapsing fever which suggests just how difficult it is to recover.

    Had I believed the idiot doc at FFC when she first told me that I didn't have Lyme I would have missed on on recovery and continued to be sick. Had I listened to this one doctor's opinion I never would have recovered after 28 years of this illness. Keep fighting for your own health.
  11. Nanie46

    Nanie46 Moderator


    I am so sorry to hear that your son has not had more improvement with his neuro symptoms. It's got to be hard to watch your son suffer like that. Luckily he has a Mom who keeps on top of the latest info.

    Thanks for your reply and I hope 2009 is a great year for you and your son.
  12. Nanie46

    Nanie46 Moderator


    Thanks for your reply. That is interesting about the "darkfield" your Naturopath did. I appreciate you taking the time to share your info.

    Continued improving health to you in 2009!

  13. Nanie46

    Nanie46 Moderator


    Wow, that was alot of information. Thanks! I would like to read some of the sites/articles that you have read. Do you remember what site/article contained the info about Pam3Cys triacyl lipopeptides?

    Are there any other specific sites/articles that you recommend? I want to know as much as possible about lyme and other tick borne illnesses. I have read quite alot already, but I'm sure there is more solid scientific info out there.

    Thank you for taking the time to share all of that. It gives me hope.
  14. Juloo

    Juloo Member

    But I applaud your energy in doing so...and your preparation.

    I WISH I could remember what magazine it was in...one of my care providers saved a professional publication for me a couple of years ago that had a great article about Lyme. The great part about it was that it was also a continuing education thing, so a nurse or doctor could get credit for reading and answering the provided questions. I emailed the publisher to ask if I could reproduce it and hand it around, and they said yes. If I come across it somewhere, I'll try to come back and post some more information. If would be an excellent way to begin to teach professionals about Lyme...and the best part was that it wasn't just the same old, same old, but well informed.

    P.S. I should add that the woman who gave it to me has Lyme herself (she used to live in the northeast and was the last person on her block to get it...so she's had it a looooong time), and she was open-minded enough to order an Igenex for my husband (I'd already had mine ordered through my FFC doc.)
    [This Message was Edited on 01/02/2009]
  15. Nanie46

    Nanie46 Moderator


    I hope you can remember what magazine that article was in...it would be great to read it and share it.

    Thank you for your response. It is just great to be able to communicate with so many people who are in the same boat, and to share so much valuable information.
  16. Waynesrhythm

    Waynesrhythm Member

    Hi Nanie, Hi All,

    Just wanted to take a moment and thank you for your posts on some of your experiences, particularly as it relates to Lyme. I just recently got some testing which indicated various Lyme bacteria my body is dealing with. I've not yet started treating it aggressively, as I've not yet done the research I feel I need to do.

    Your description of educating your doctor sounds very similar to the process I went through when trying to get a doctor to treat me for adrenal insufficiency, based on the Jeffries' protocol. It took a while, but eventually I found a doctor who was willing to go outside of the conventional medicine comfort zone. It was a major change for me at the time. There seems to be many areas of medicine that doctors are not always well informed on.

    I heard a story once where a distinguished physician was giving a commencement speech at a well known and prestigious medical school. In his speech he told the graduates that as much as half of what they just learned will eventually be found to not be accurate. And unfortunately, nobody knows which half it is.

    I think this is a good story for all physicians (and patients) to consider. As much as many would presume medicine is primarily about science, I consider it more of an art, with an element of dependency on science. Getting unnecessarily bogged down in orthodoxy doesn't help either physican or patient.

    Thanks again for your contributions.

    Best, Wayne
  17. Nanie46

    Nanie46 Moderator


    You are welcome, and thank you for your reply. I hope you find all the info that you need to proceed with the proper treatment for lyme.

    We are all different, yet we are all the same. I really appreciate this board. We are all in this together.
  18. loto

    loto Member

    I have known I've had FM for only about 8 months now, and am finding all of this lyme disease info interesting. I forgot who it was on this site that found out they had lyme instead of FM. I've never been tested for lyme. My question is this: at the moment, my FM pain seems to be hiding out, but I still have other problems. When a person has Lyme, do they feel terrible every single day, or do they have days when they feel "normal" (whatever normal is anymore!)? I'm just wondering if I should be tested for other conditions that have similar symptoms of FM.
    Any help would be appreciated.
  19. Nanie46

    Nanie46 Moderator


    I found in all the reading that I have done about lyme that it can take on many different presentations.

    Some people are really handicapped by it. Others continue to function well despite alot of symptoms. Some people have joint pain and others have just muscle pain. Some present with ADHD or Parkinson-like symptoms.

    Many people who were first diagnosed with FM, CFS, ALS(Lou Gehrig's disease), MS, RA, Parkinson's, ADHD and others, were later found to have Lyme disease and other tick-borne illnesses.

    I never feel "normal", but no one would ever really know there is anything wrong with me if I didn't tell them. I function everyday. It's just that the pain, stiffness, soreness, insomnia, etc is the only normal I have known for the last 22 years.

    There are alot of variables such as the particular species of borrellia that a person is infected by, the amount of the spirochete load in their body, other co-infections (tick-borne and not tick-borne) and a person's general heath.

    Please read the articles that I mentioned in my post at the top. If you are depending on a Dr to find the source of your problem so you can make a recovery, it will probably never happen.

    I have had FM for 22 years and most Dr's just want to treat the symptoms, and never look for a cause.

    It is up to you to do this research and present it to your Dr in writing from credible sources.
    You should definitely look into lyme as a possibility. Don't suffer for many years if you have a chance to find the cause and get proper treatment with a chance of recovery.
  20. Nanie46

    Nanie46 Moderator