FM, CFS, Lyme so Confused

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by greatgran2, Feb 5, 2014.

  1. greatgran2

    greatgran2 Member

    Haven't been here in awhile thought I would ck in and see how everyone is doing. After being dx with CFS and FM for 12 yrs, then in 2011 dx with Lyme, then chronic lyme..

    Went back to my MD he says he doesn't know.. Now he thinks FM?CFS all I know is this in one heck of a thing to have, whatever it is.. Oh, I did try abx for awhile for Lyme and improved some but now back in the dark hole.

    Have seen 3 different rheumys, they say FM, but only did a standard lyme test. Did see a llmd and she said I have chronic lyme, probably had it since childhood..

    Anyone go on this merry-go- round and have any answers?

    Hope some of the older ones are still here..

    GG
  2. Soul*

    Soul* Active Member

    Hope you find some answers soon. Go with what feels good for you to go with. So many questions but life goes on and all we can do is our best to cope and noone has the right prescription for that.

    Hang in there and make the best of it. Don't get stuck in questions ok, that will only give so much frustration.

    I do hope you find answers but all and all the label won't change how you feel, we still have to find our way to deal with it best possible way we can.
    freida likes this.
  3. greatgran2

    greatgran2 Member


    Thank you Soul for your support.. What's your story?
  4. Soul*

    Soul* Active Member

    I have ME diagnosed in '97. Not doing to well at the moment. Probably still a setback from out of the house activities around christmas and new year. I stopped trying to doctor my way out of this and am mainly keeping my spirits up by studying spirituality to find the best approach to deal with what life deals to us. The setbacks without a clear cause are stil hard but I found a lot of support in learning to train my mind to focus on the CAN DO's/BE's more and to take support from all that is available to us on a spiritual level whilst dealing with managing the physical as good as possible.
    freida likes this.
  5. TigerLilea

    TigerLilea Member

    If you have chronic Lyme Disease then you need more than a short course of antibiotics. I believe most people are on them for one to two years, and that it is a cocktail of antibiotics that they take.
  6. Nanie46

    Nanie46 Moderator

    greatgran,

    You cannot rely on what a mainstream MD/Rheumatologist,etc tell you about Lyme disease. They know virtually nothing about chronic Lyme and it's related coinfections. In fact, most of them do not believe it even exists.

    If you were improving on antibiotics etc for Lyme treatment, then that suggests you do have it. I suspect that your LLMD knew what she was talking about. It can take years of treatment and that includes treatments that are not just antibiotics.

    Because chronic Lyme adversely affects so many systems in our bodies, it is necessary to address many issues in order to really recover. Antibiotics alone will not do it.

    This includes adrenal fatigue, other hormonal imbalances, treating coinfections such as Babesia, Bartonella, Mycoplasma, methylation problems, viruses, mold problems, chronic candida can be a huge problem, food sensitivities, gut dysbiosis and leaky gut, nutritional deficiencies, removing toxins, heavy metals, EMF's and other issues.

    I know finances play a big part in recovering from Lyme and coinfections since many of us have to pay for almost everything out of pocket.

    I bet you would continue to improve if you had a provider who could evaluate and treat you properly for these issues long term. Mainstream doctors really do not think about many of these issues and do not know how to address them anyways. It usually takes a LLMD, Naturopathic Dr or Integrative Medicine Dr to address multiple issues like these.

    In the meantime, I would do everything you can do to help yourself, such as no sugar/gluten/soy/artificial sweeteners/corn syrup, lots of fish oil/krill oil, lots of Vit D3, eat lots of fresh veggies, and take good quality probiotics daily. There are many other beneficial vits and supplements depending on what the issue is.

    Most people need to treat a minimum of 3 years for chronic lyme and coinfections. Many people treat for much longer than that.

    Here is some additional information about Lyme and recovering from chronic illness:


    http://www.townsendletter.com/July2013/lymecomplex0713.html


    https://well-scent.com/fran-sussman-february-3rd-2014/


    In the following link is chapter one of Dr Horowitz's book titled, "Why Can't I Get Better". He is a well-known LLMD.


    http://us.macmillan.com/BookCustomPage_New.aspx?isbn=9781250019400
    jaminhealth likes this.
  7. greatgran2

    greatgran2 Member

  8. greatgran2

    greatgran2 Member

    Gee, having trouble replying but will get it figured out.. Nanie46, I could not tolerate antibiotics never was on them for a full dose, then off and would try a different one , same story. So guess I could say I was never treated with antibiotics for any amount of time.

    I am trying to call the LLMD I was seeing to set up a phone consult and take it from there but the office hasn't returned my call. I am doing diet and some supplements, pacing and lots of rest. Seems since the holidays I haven't been able to bounce back.

    I had about 32 test most through Igenex , Bart, Babs, Celiac,H. Pylori, PCR,Allergen,Toxins etc. the only positive was the IgG 30+, 34+, 41+ and a positive ANA. IgM all negative. So want the LLMD to explain all the test.

    I know I can't rely on rheumys or my MD but not so sure about LLMD either.

    How are you doing are you still in treatment? Thanks for your reply..
  9. IanH

    IanH Active Member

    greatgran2
    I understand your confusion. While we do not have Lyme disease in NZ (except for cases coming into the country) we do have confusions between mycoplasma infections and ME/CFS.

    It is quite common for people with ME to have a positive response from antibiotic treatment. This is thought to be due to two things happening:
    1. the anti-inflammatory effect of many antibiotics, especially those used to treat Lyme and mycoplasma infections.
    2. It may also be due to the fact that some of the symptoms of ME come from or are increased by (secondary) infections and raised amounts of gut bacteria which interfere with the nervous system. I have just written a post:

    (http://forums.prohealth.com/forums/index.php?threads/study-opposes-malingering-theory.85663/)

    which explains a little about the effects of bacterial toxins (known as endotoxins) which interfere in this way. So when you take antibiotics some of these "infections" are reduced so reducing the amount of these toxins being produced. But when you go off the antibiotics the toxin level returns and symptoms worsen again.

    I did say "a confusion between mycoplasma infections and ME/CFS" but actually there is no reason to assume that a mycoplasma infection could not cause ME/CFS. I think the same about chronic lyme disease. There is little if anything to distinguish the symptoms of lyme from ME/CFS - so in a sense you could say that lyme disease is ME/CFS. (talking in theory here:) Of course Lyme is not the only cause of ME/CFS. Probably many different infections trigger (cause) ME/CFS. When you think about it ME/CFS is a "deranged" immune system with indicators of chronic, hidden infection eg. dysfunctional natural killer cells For more on this see my above post.

    So what I am proposing to you is: Do you have lyme or ME/CFS? Probably both labels are valid because they may be the same thing in you. Just because a doctor diagnoses ME/CFS does not preclude lyme however few doctors would equate them. I do in certain people, perhaps you are one of those.
    Last edited: Feb 6, 2014
    bct likes this.
  10. greatgran2

    greatgran2 Member

    IanH, thank you for your reply and information.. That is what I am trying to find out , what do I have? Once I know then I think I can deal so much better.. How are you and whats your story? tks again
  11. Nanie46

    Nanie46 Moderator

    greatgran,

    Band 34 is lyme specific (see page 7 under the heading "Western Blots" of Dr Burrascano's paper: http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

    That means that only someone who was exposed to the Lyme bacteria would produce an antibody response to band 34.

    Remember that a diagnosis of ME/CFS does not pinpoint a cause, but just names a group of symptoms, so when people are given that diagnosis, they don't really know what they have....in other words, what caused it and therefore how treat the cause.

    A Lyme diagnosis does pinpoint a cause, although most people have more than one infection.

    Dr Horowitz, a well known LLMD, in his book and in his presentations, says that Lyme should be called "MSIDS, or Multiple Systemic Infectious Disease Syndrome". His book "Why Can't I Get Better" is available online. I think it would be very helpful for anyone with chronic illness.

    You said, "Oh, I did try abx for awhile for Lyme and improved some but now back in the dark hole." and then "...I could not tolerate antibiotics never was on them for a full dose, then off and would try a different one , same story. So guess I could say I was never treated with antibiotics for any amount of time."

    You said you improved some...I would look back to what ever you were doing at that time that may have caused improvement, and try to do it again.

    If you cannot tolerate antibiotics, perhaps you could research different herbal protocols such as Buhner, Cowden, etc, and try one or more of those, along with addressing other issues that I mentioned in my previous reply.

    There are a number of herbal or natural products that have antibacterial, antiviral and antifungal properties.

    It is more beneficial to address all the issues that commonly affect people with chronic illness (infections, adrenal fatigue, gut issues and other issues that I listed in previous reply) than it is to spend time second guessing what to call it.

    It is my opinion that people with ME/CFS have chronic infections that have also affected those other issues, just like Lyme does. So address all the issues through an open-minded and knowledgeable Doctor and we are more likely to recover.

    You asked how I was doing...I treated for 3 1/2 years. I no longer have fatigue, insomnia or brain-fog. It is wonderful to be able to get out of bed and function. My pain was reduced with doxycycline. I do have some pain and stiffness and was recently diagnosed with Hashimoto's Thyroiditis. I am working on that and I still take vits and supplements, try to eat a clean diet and exercise....thanks for asking.
  12. greatgran2

    greatgran2 Member

    Well, can't afford it but gave in and called the LLMD I was seeing, I have a phone consult on Tues. Will take it from there. I would still be taking abx if it wasn't for the horrible side effects and what they did to my esphog. plus the throwing up etc.. Going to spend this money so will have to try as told.

    Its weird I can't pinpoint what made me feel better except stopping all meds and most supplements. Change in diet helps some but very little. Guess lots of rest is the key for me but can't rest forever..

    Tks and have a good day.
  13. IanH

    IanH Active Member

    As nanie46 says, the only one you can pursue is lyme. ME/CFS investigation will get you nowhere on the hopeful path of recovery. (at this stage anyway). All the best with your appointment.
    Nanie46 likes this.
  14. Mikie

    Mikie Moderator

    Thanks Nanie and Ian. I agree with you both. There is so much overlap in so many of these conditions but there is almost always something which triggers our conditions. With me, it was a mycoplasma infection, which is likely the same thing as Gulf War Illness. I lived next to a military facility where soldiers were being vaccinated prior to being deployed just at the start of the first Gulf War. I've never been the same since and developed CFIDS/ME. After an auto accident, I acquired FMS. Along came RA, hypothyroidism and Sjogren's. Almost no one I know has only one condition. We are Petri dishes.

    I agree that treating the Lyme should be paramount. I took antibiotics for 2 1/2 years to treat the chronic mycoplasma infection before I could begin to heal and treat the rest of my illnesses. Of course, now that I have had the peptide injections, I no longer suffer the symptoms of these conditions. Now, I just suffer the effects of old age. But, I digress...

    Treat the key illness first and go from there. Good luck.

    BTW, Nanie, any news on a peptide treatment for Lyme?

    Love, Mikie