Can't be Lyme, can it?

Discussion in 'Fibromyalgia Main Forum' started by an1000, Oct 8, 2009.

  1. an1000

    an1000 New Member

    Like many on here, I've been to tons of docs. For 13 years I've been doing this. A new doc today listened to me for 5 minutes as I listed my major symptom, the inability to recover from exercise, the post-exertional malaise. He insisted I list 3 more symptoms so I said, poor sleep, muscle stiffness, and brain fog. And he said "you have Lyme." Just like that. No other doc has ever even brought this up. I just don't trust him one bit. P.S. I have in the past had the cursory tests to check my immune system, viral titers, etc. I assume that's why no other doc has ever even brought up Lyme...Anyone's thoughts on how many CFS patients find out suddenly one day they have Lyme, treat the Lyme, and make a full recovery? Are my instincts correct that this guy just likes to tell people they have Lyme?
  2. jasminetee

    jasminetee Member

    did you ever go see Dr. Bishop in SF? You asked for a reference a few years ago and I told you about her.

    Whoever you just saw sounds pretty clueless to me. Of course you can have Lyme, anybody can - that doesn't mean you do just from those symptoms.
  3. maps1

    maps1 Member

    I posted here for several years using maps then maps2 (I think). Changed my internet service and lost my user name so had to get new one. You can look up my numerous posts, just giving you some background. I tested positive for lyme through Igenex, only did the test as so many of the posters tested positive and I thank every single one of them.

    I can tell you for sure that my positive test was a total shock and it took me a long time to get treatment. I did a lot of reasearch and asked a lot of questions.

    Unfortunately getting a lyme diagnosis is not a walk in the park, the first doc I showed it too immediately said it was a false postive and then when I found out all the political stuff going on and that LYME was a bad word I was really dissapointed and discouraged.

    If you go to the lyme board you will see a posting called "name the names". This is a list of people that used to be posters here and their family members that now have a diagnosis of lyme - total of 125 so far.

    I saw the lyme doc and he ran all kinds of unusual blood test, full body scan & MRI. All blood tests for immune, viral everything showed normal except I was positive for a blood disease called Monoclonal Gammopathy. The MRI (my first) came back with severe white matter disease, he sent me to neurologist to rule out MS.

    Had my neuro appointment Monday although he is going to run an Evoked Potential test he told me that there was only one lesion that looked vaguely like an MS scar and the tests like touching my nose etc were all normal.

    The reason I am telling you this is because I had an appointment this morning with my lime doctor who is a specialist in internal medicine and infectious disease.

    He told me that he ran all the tests and sent me to the neuro doc because their is not one reliable test for lyme disease and so he had to rule out every other possibile disease.

    Now that everything else is rulled out I am now in serious treatment for lyme last month I was on 1000mg of biaxin and am herxing very badly with fevers, pain etc. I would not be getting this if there was no infection.

    My thoughts are if you think there may be another cause for your CFS then find out all you can and find yourself a good lyme literate doctor, lymenet is a good place to go for information.

    To answer your last question, for myself it is too early to say other than to say I currently feel 100% worse but according to my doctor, who is the most thourough proffesional doctor I have seen in years, I have every chance of full recover.

    That will obviously exclude any permanent brain damage (lesions).

    The other example is my son who four years ago started to have the same cfs symptoms as me we were beginning to think CFS maybe infectious. three months ago he had reached the point of only being able to work two days a week, he had extreme fatigue and brain fog.

    He has been going up to NY for treatment for the last three months and has been tracking his progress. Last month he had only three bad days, pretty darn good when he was thinking a lifetime of CFS.

    I am too fogged to give you links but bettg will probably be stopping by to give you all the links.

    I am wishing you all the very best, I hope it works out for you one way or another.

  4. victoria

    victoria New Member

    the IGenex western blot is the most reliable, but at that it's only about 50-70% reliable. PCR tests are less reliable and a waste of money.

    My son started to go downhill when he was about 12 - constantly sick, became depressed, had other neuropsych symptoms such as problems with memory. He tried to go to HS the first 2 years, but had to totally drop them with a medical excuse 2 semesters, and went only part time the other 2 before giving up and eventually getting a GED.

    At that point of dropping out, he was getting unrelenting fatigue, had lost 10 lbs., heart rate went down to 45-48 bpm, had migrating nearly crippling pain, etc. Our internist put him thru a lot of tests (likely many of the same you had, I know it was a helluva bill!) without a dx in 2004; at least the MD had the honesty to say he didn't know what was wrong, but obviously something was wrong. He didn't even know to whom to refer him.

    I'd been reading about lyme at that point, could see myself as well as him re symptoms... I took him to a very good lyme-literate doctor 200 miles away. My son was positive on the WB 2X, 6 months apart, showing both active and long term infections, and was positive on all the bands required by the CDC for tracking.

    He never had a rash or anything that we know of. He got neuropsychological symptoms first before any physical symptoms, which often happens actually.

    I was already doing a protocol that works on stealth pathogens like Lyme, and understood why I was herxing, which is what helped clue me in on what was happening to my son when all his other "regular" blood screening tests were negative prior to seeing a LLMD.

    A few months ago I looked thru old lab tests and found a test from 2001 which showed I had lyme antibodies and the lab report ** it and said I should have a WB within 10 days. That doctor never had me tested, nor did he discuss it with me, nada... and I guess I must've been in a fog because I didn't notice it. That was before I even joined this board. I've never gotten the WB because of $$, what's the point if I know what works.

    The longer you've had it, the harder it is for most to get well. Because it is caused by a spirochete, cousin of syphilis (also a spirochete), it can go into any cells it wants, including crossing the blood-brain barrier; as do other types of bacteria and parasites like mycoplasma and babesia. It can also form cysts to erupt whenever the body is 'friendly' to it so the 'babies' can invade. Therefore, if you have it or one of the other types of stealth pathogens (most have more than 1), not many saying they're 'cured' -- the more correct words are 'in remission'. However, one may or may not ever have another problem with it... or continue to have problems regardless, altho symptoms are lessened.

    Even the CDC says it is still a clinical diagnosis; a trial of abx for a couple of weeks at ADEQUATE amounts and how you react to the abx is the only way in the end to tell. If you get a Jarisch-Herxheimer ("herxing) effect, which is not a side effect of the abx but a reaction to the endotoxins released by the pathogens being killed (first seen when penicillin was given to syphilis pts), then you know you're killing lyme and/or other pathogens that are killed by the same abx.

    However, there still remains a lot of controversy over how long to treat with abx, how to treat, which abx, etc. There is a lot of research out there supporting long-term abx therapy if you've been ill a long time.

    You need to find a doctor you trust, first of all, regardless if you think you have lyme or not, AND educate yourself beyond whatever any doctor tells you. Why wouuld you go to a doctor you don't trust?

    My son is not 'cured', is in fact on disability at age 21, tho he is better than he was before taking abx. I think he would've been dead by now at the rate it was affecting him if I hadn't been able to put 2 + 2 together when I did.

    Read the site... if you go to the lyme site here I have a 'sticky' post that gives a lot of resources/places to go online and read, also about how to find doctor referrals, and alternative approaches etc.

    all the best,

    [This Message was Edited on 10/08/2009]
  5. Nanie46

    Nanie46 Moderator


    It certainly can be lyme...happened to me too.

    Lyme is a clinical diagnosis. That is critical to remember. It means it should be a diagnosis made based upon history and symptoms...not a lab test.

    99% of Dr's run a standard lyme test....see a negative result and immediately rule out lyme.

    That is totally wrong. Lyme should NEVER be ruled out by just a negative test.

    Doing so leaves many, many people who have lyme, undiagnosed and untreated for life.

    There is no really accurate test for lyme.

    The best one to pursue if you can is a Western blot IgG and IgM from Igenex lab in CA...a tick borne disease specialty lab.

    Now...and this is very important......when you get a result that says "CDC negative" and "Igenex negative" not think that this means that you do not have lyme.

    You are only hoping for clues with testing.....because lyme is a clinical diagnosis.

    Read the western blot info on page 7 of this extremely important paper by a lyme expert....

    Note the bands that Dr B says are important. You are looking for a positive or IND result on one lyme specific band plus band 41.

    Now......many, many people with lyme do not even have a lyme specific band show up for different reasons.....

    Testing just isn't that good.....our immune system has stopped making those particular antibodies.....this is an antibody test, not a test looking directly for the it is difficult.

    Only a real Lyme literate MD will be able to understand the complexity of lyme and common coinfections and will properly evaluate you.

    If you go to a standard Dr or infectious disease Dr they will rule out lyme with a negative test because they just do not understand how to recognize, diagnose or treat chronic lyme and coinfections.

    Many people with lyme also have other tick borne infections like babesia (associated with fatigue that does not clear with rest and is made worse with exercise.....see above paper page 26)

    Other common coinfections are bartonella and ehrlichia.....also see pages 22-27 of that paper.

    Go to pages 9-11 and look at the symptom list. You do not need to have every symptom....but if you have many.....think lyme and coinfections.

    The most common lyme symptoms are fatigue, pain, and cognitive problems.

    I really, really urge you to go to on flash discussion....sign up for on Medical Questions board.......create a post asking whatever questions you want.

    It is a very active lyme board with alot of intelligent and helpful people. also has a Seeking a Doctor board. You can post there to find a Lyme literate MD (LLMD) in your state.....they are few and far between. You want a Dr to evaluate you who follows ILADS guidelines, not IDSA guidelines.

    Remember that CFS and FMS are really just sets of symptoms given a name and then Dr's tell you there is "no known cause"....

    Well, everything has a cause, you just have to find it.

    It is likely that the cause is infectious.....and very probable that the cause is a very complex bacteria...borrelia burgdorferi (lyme) and coinfections.

    Other good links.....

    important article explaining the controversy about lyme treatment.....

    I will be glad to help you in any way.

    I am dekrator48 on

    All the best to you.

  6. maps1

    maps1 Member

    New you would be along but have to say my infectious disease specialist follows all the latest information on lyme and he ha been amazing.

    Having said that we are in Canada and therefore I realyy know nothing about how informed the infectious disease docs are in US.

    take care everyone

  7. Nanie46

    Nanie46 Moderator

    Hi maps,

    Yes, Canada must be alot different than the US when it comes to ID Dr's.

    I am very happy that you found one who can help you!

    Wishing you well,

  8. Slayadragon

    Slayadragon New Member

    Dr. Cheney states today on his web site that he's yet to see a case of just Lyme.

    It's my impression that many (but maybe not all) CFS sufferers have Lyme. Once the immune system is decimated, it's easy for something like Lyme to get a foothold.

    Thus, insofar as someone has CFS, it would be reasonably safe to assume that they also (as a result) have Lyme.

    Lyme is a particularly nasty bug. Thus, treating it effectively seems like it would result in improvements.

    The problem is that treating Lyme effectively is really hard in most patients.

  9. an1000

    an1000 New Member

    The problem I see with Lyme as a diagnosis is I hear of so FEW people who definitively say they've had Lyme and have fully RECOVERED from it. And to those of us who've had CFS for so long, you realize what a trap that can be to get sucked in to a new possible diagnosis, one that is in such a gray area, one that has such an undefined path of diagnosis and treatment. It seems like another way for the medical community to take advantage of desperate people looking for answers.
  10. banya

    banya New Member

    I think it may be possible that those who do have lyme have also contacted one if not more various other things (while their immune systems are low). Could that be the reason no one recovers well from lyme once they've had it for a while? They haven't killed the other stuff that has settled in.

    Just wondering.
  11. victoria

    victoria New Member

    Also, unless lyme is caught early because one did get a rash or severe reactions, most go undiagnosed for a long time. I have talked to people who were caught early and are fine. As to whether they will be for life, who knows. I read somewhere where a significant % treated for syphilis (also a spirochete but STD, not vector born) treated with the 1 shot penicillin in the 1930s did evolve into tertiary syphilis by the 1950s.

    Add to that, besides the viruses we're all exposed to, the tick are 'dirty', and it's rare for someone who has lyme to only get lyme anyway from the tick.

    Add to that, it can remain dormant for a long time before something activates it. It is known that the longer one has it, the harder it is to get rid of it. It does seem possible to get into remission, from what I've read, but I don't think anyone has any idea of how many do when they've been suffering from symptoms for years like most of us (who know we have it) have been.

  12. Nanie46

    Nanie46 Moderator


    I agree with Victoria that early diagnosis is a huge benefit and it is when patient's go undiagnosed for a long time that they really suffer.

    Borrelia burgdorferi (lyme) is the most complex bacteria identified to date.

    When considering lyme as a possible cause of your illness/symptoms, just think of it as a bacteria.....not a separate diagnosis.

    It is the cause of your illness/symptoms that you really want to find. Many people will not consider lyme because they have a diagnosis already.

    The difference is that Borrelia burgdorferi....a bacteria....can cause chronic fatigue syndromes, fibromyalgia syndromes, multiple sclerosis, arthritis, etc.

    It would be much less confusing to people if it were just called Borrelia burgdorferi. Then people would realize that it is a bacteria and should be highly suspect, just like other infectious agents like viruses.

    It is not the patient's fault who has had an undiagnosed chronic borrelia burgdorferi infection, that they may not recover.

    It is the fault of the physicians who were not educated enough to recognize the illness early on and treat it properly, before it became disseminated and chronic....perhaps leaving the patient with permanent damage.

    It is also the fault of Dr's who will only treat lyme with short term antibiotics. The organism is not completely eradicated causing patients to end up with disseminated lyme. They develop symptoms weeks, months or years later, which Dr's then deny are related to the original infection.

    The lyme spirochete infects the neurological system and can spread to every organ, tissue and joint in the body.

    The spirochete can change into forms that are extremely hard to kill.

    It can inflame the cranial nerves, causing symptoms like Bell's palsy, trigemnial neuralgia, light and sound sensitivity and others.

    Having had a fibromyalgia diagnosis for 21 years before discovering that I have a chronic borrelia burgdorferi infection has left me with this perspective.......

    Think of your illness as a set of symptoms for which you have not yet found the cause.

    Your CFS or FMS is the symptom of a larger picture for which you are still looking for answers.

    Do not get hung up on the fact that you have a diagnosis migraines is a diagnosis but a person with migraines would like to find the cause of the migraines so they could stop them altogether....not just take meds to cover up the symptoms.

    Lyme is a CAUSE because it is a bacterial infection.

    Everyone with FMS, CFS, MS, RA, Lupus, Parkinson's, autism, adhd, psychiatric diagnoses, etc should read the following paper......
  13. meditationlotus

    meditationlotus New Member

    you read the book "Cure Unkown" by Pam Weintraub, a very conservative science journalist who, along with her entire family, developed Lyme Disease. She tells about how she trusted the CDC in dealing with Lyme and the nightmare she went through trying to get well. She talks about people who were given the diagnosis of CFS and later were found to have Lyme. She talks about the how the CDC is refusing to consider the tons of new research regarding Lyme for political (money, ego, etc.) reasons . She is very conservative and would have never believed that the CDC could lie about Lyme Disease until the situation happened to her.

    The illness is real. The CDC's way of diagnosis is not accurate and their way of treating is unreliable. This is an excellent book. The movie documentary "Under Our Skin" is supposed to be based on the book. I haven't seen it yet.

    [This Message was Edited on 10/11/2009]
  14. victoria

    victoria New Member

    there are known diseases that aren't fully cured/curable... that people live with continually combating. MS and Lupus first come to mind... and there is a 'post-polio syndrome' that is incurable and is often confused with CFIDS...

  15. Nanie46

    Nanie46 Moderator

    I highly recommend going to see the movie documentary "Under Our Skin" if it is shown in your area.

    It shows how many people given diagnoses like CFS, FMS, MS, Parkinson's, etc really had a chronic Borrelia burgdorferi infection (lyme).

    It is an excellent film and gives lots of evidence for the existence of chronic lyme and why it should be treated with long term antibiotic therapy like the ILADS says....not short term like the IDSA says.

    It follows the struggles of real people that will look just like you and what you go through every day.

    You can watch the trailer online at....

    and the link to a map with locations of screenings is at.......

    Also, as meditationlotus said, Pam Weintraub's book is excellent.

    Another great one is "The Baker's Dozen and the Lunatic Fringe, Has Junk Science Shifted the Lyme Disease Paradigm" by PJ Langhoff.