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    Old 10-25-2004, 01:52 PM   #1
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    The overlap of Lyme disease/MS/Chronic Fatigue Syndrome

    Hey all. I've been suffering chronic Lyme Disease for about a year now with very little relief from treatment with continuous antibiotics. I'm willing to bet many of you are stuck in the same boat as me feeling like this is never going to end! I'm a pharmacist so I often take it upon myself to do as much research into this thing since most doctors I know don't seem to have a clue as to what happened to me. I've discovered that, and I feel most of us would here would agree, that Lyme Disease, MS, Fibromylagia, and Chronic Fatigue Syndrome have several overlapping characteristics/symptoms. I'm sure some of you have been diagnosed with chronic fatigue or MS before they discovered Lyme Disease. I thought I had Chronic Fatigue Syndrome or Adrenal Fatigue before being diagnosed myself. Because of the similarities between the diseases, i often search the other forums on HealthBoards and other websites to see if there are treatments that may help chronic Lyme Disease sufferers. I stumbled apon a treatment that is all the rage in MS patients - Low Dose Naltrexone (LDN). This drug have been approved years ago by the FDA for treating narcotic abuse at the dose of 50mg for its ability to block opioid receptors, but now several doctors are using it at much lower doses (1.5mg -4.5mg) for MS patients. The theory is that the partial blockade of opioid receptors will stimulate the pituitary gland to stimulate the production of endorphins which will inturn help correct a TH1/TH2 immune system imbalance. I've read several testimonials on the web from MS patients who have experienced remarkable results by way of reducing or eliminating many symptoms!
    Now, how does this information help us Chronic Lyme Disease patients? Well, many of the current theories suggest that most of us probably don't have a "chronic infection", but rather "chronic immune system dysfunction" and I tend to agree with them. I feel that our immune systems going haywire have more to do with our symptoms than anything else. After having been treated for several months with antibiotics, I received little if any benefit from the treatment. I know a woman, a friend of mine, that was on antibiotics for 2 YEARS and it did virtually nothing for her either. She suffered for 3 more years but slowly recovered completely after about 5 years, but I think more could have been done for her and I. I did some more searching under chronic fatigue syndrome and have noted that several of these patients are also trying naltrexone with some remarkable success! There most be a link here somewhere! Could this mean that our chronic syptoms could be helped by naltrexone as well? I think the verdict is still out on that one, but its looking hopeful.
    I feel that the majority of us who have been adequately treated with antibiotics for 6 months or more with little resolution of symptoms should seriously consider some alternatives. I feel that Low Dose Naltrexone may benefit some or most of us stuck in this god awful state. I'm wondering how many of you have heard of this treatment or has even tried it. I'm seriously considering going to my doc and asking for a prescription. If any of you have comments on this treatment or has tried it already, I would love to know about it. Comments/questions please!

     
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    Old 10-25-2004, 01:55 PM   #2
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    Re: The overlap of Lyme disease/MS/Chronic Fatigue Syndrome

    lamotta -

    Thanks for the information. Please keep posting your research.

    I have not heard of this but will keep it on my radar since I am just starting to undergo treatment with antibiotics.

    -ncgirl88

     
    Old 10-25-2004, 04:56 PM   #3
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    Re: The overlap of Lyme disease/MS/Chronic Fatigue Syndrome

    In response to some of your questions, Ticker, I have seen several infectious disease specialists, been tested for other possible infections, and they all tell me the same thing -- my symptoms are not typical of Lyme Disease, therefore, as far as they can tell, I have a post-Lyme Disease syndrome which is like telling me I have Chronic Fatigue Syndrome. The options recommended to me were to see a physical therapist to prevent deconditioning and a psychiatrist to aid the neurological symptoms.

    What's weird is my sypmtoms haven't changed much since I've been diagnosed with Lyme Disease and they never hesitated to give me IV Rocephin and Doxycycline right off the bat! However, after several months and only slight improvement, they decided to discontinue the antibiotics and diagnose me with post-Lyme Syndrome. It's very frustrating, but I'm not giving up. I'm going to see a Lyme specialist in Marlton, NJ just to get one final opinion on this whole thing.

    I get the feeling the every persons case is slightly different, but what's scary is how do we know what to do? With no test to see if you are cured, you may never know if just a couple months more of antibiotics would have cured you yet you gave up too soon. Still, I feel that 6 months is a good cutoff date even though most doctors will stop at 2 to 3. If only there was a standard protocol.

     
    Old 10-29-2004, 10:34 PM   #4
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    Re: The overlap of Lyme disease/MS/Chronic Fatigue Syndrome

    Ticker, I was planning on going to the Lyme Disease Treatment Center at Virtua Hospital in Marlton. Is this the same doctor? Why do you not recommend I go there?

     
    Old 10-30-2004, 04:41 AM   #5
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    Re: The overlap of Lyme disease/MS/Chronic Fatigue Syndrome

    I am new to this list and am unfamiliar with the list protocol, so please forgive me if my post seems disjointed . Funny, since that's how my life is most of the time anyway.

    My history is extensive, but I have yet to find a doctor that has EVER treated my lyme aggressively.

    And now, years later, when I have another positive titer (IgG or is it IgM? I can't remember which one is the short term one) anyway, I find new information that the original "allergic reaction" they think I had to Doxy was most likely Herx. That really shook my confidence in the docotor's office.

    I am at a loss to locating a physician, neurologist or anyone who knows wants to treat this aggressively.

    I also have just been told I have a positive ANA as well as Rh. But the Lupus specialist doesn't think I have Lupus, in fact, she pretty much wasn't concerned at all, and had no answers.She did, however, draw 7 red top tubes for further testing, and told me to wait 2 weeks for the results.

    I did some research, and was concerned about MS, but after reading more about chronic Lyme, decided to jump in here with you folks.

    Oh, and yes, I have been labeled with CFS after the initial Lyme's treatment was concluded, and I felt wonderful until 2 months later. that's when I saw a CDC specialist, whom decided I had been treated properly, and was most likey suffering from CFS. Sleeping with meds (elavil) and ear plugs made a big improvement, until a few months ago.

    My current "issues" are fatigue, unilateral muscle soreness and swelling, blurred vision off and on in my right eye, tingling in my extremities, and serious memory loss. I have NEVER had much joint involvemenet, except when i was completely immobilized by pain in my spine during the "initial" Lyme bout. I also developed Bells Palsy (on my right side) during that jaunt, before they finally agreed it was Lyme's and didn't wait for the titre results and started me on Doxy and steroids.

    I am a responsibility junkie, but have been working just as a clerk in a grain store for several years now, but my private life is consumed by training and showing rare horse size, Mammoth Donkeys. I try to stay active, but it sure makes it hard to pull my share of the housework, after I've been outside working the animals.

    Any thoughts you might have, PLEASE let me know.
    I'm located in Massachusetts.

    Last edited by cyberdonkey; 10-30-2004 at 04:50 AM.

     
    Old 10-30-2004, 06:57 AM   #6
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    Re: The overlap of Lyme disease/MS/Chronic Fatigue Syndrome

    Hi cyberdonkey, welcome to the board! I have never heard of Mammoth Donkeys--they sound very interesting.

    If you have a positive test and symptoms, you need to be treated. Do you have copies of your test results? If not, I suggest you get them. The IgM tests for a more recent infection and the IgG a longer-standing one. Besides Lyme disease, ticks can transmit several co-infections--Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it is important to be tested. Were you tested for these?

    If the doctor you saw did not know about the herx reaction, he is not Lyme knoweldgeable. Finding a knowledgeable doctor is the most important thing you can do. Sometimes people who have Lyme have a positive ANA.

    What dose of Doxy did you take and for how long? You were given steroids? It is my understanding that people who have Lyme should not take steroids because it can make their symptoms much worse. If it was a small dose for a limited amount of time, it may be okay.

    There is one supposed Lyme doctor in MA but from what I have heard I would not recommend him. There is an excellent one in Ridgefield, CT. Would you like his name?

     
    Old 11-03-2004, 08:09 AM   #7
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    Re: The overlap of Lyme disease/MS/Chronic Fatigue Syndrome

    Igg means you have been exposed sometime in the past and Igm indicates a recent OR active or relapsing infection.

     
    Old 11-03-2004, 10:25 AM   #8
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    Re: The overlap of Lyme disease/MS/Chronic Fatigue Syndrome

    Just wanted to clarify so as to not have people more confused than we already have to be with the controversy over lyme disease.

    When we are exposed to an antigen (eg. lyme/BB) for the first time, there is a lag of a short period of time before specific antibodies becomes detectable. These antibodies are IgM. After a short time, the antibody level declines. These are the main characteristics of your immune system's primary response. Your immune system's secondary response is to produce IgG antibodies. Basically, after your primary response you have cells that become "memory cells" and when encounter that same antigen again will produce the IgG antibody to fight it. IgG antibodies are indicative of a previous primary resonse to the antigen. The presense of IgG antibodies tells you that you may have an active infection, a past infection that was treated, or a past infection that was untreated. In addition, if at a later date you are re-exposed to the same antigen, there is a far more rapid appearance of antibody, and in greater amount. It is of the IgG class and remains detectable for months or years. These are the features of the features of your immune system's secondary response.

    Hope this helps clarify things for some.

     
    Old 11-03-2004, 10:35 AM   #9
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    Re: The overlap of Lyme disease/MS/Chronic Fatigue Syndrome

    It is my understanding that on the Western Blot test, the IgM shows a more recent infection and IgG shows a longer-standing infection.

    Last edited by ticker; 11-03-2004 at 10:47 AM.

     
    Old 11-03-2004, 10:52 AM   #10
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    Re: The overlap of Lyme disease/MS/Chronic Fatigue Syndrome

    The IgG and IgM antibody responses to Lyme are very interesting and I have been told by a couple doctors that they have seen people that they suspect have had lyme for 10 years and still show IgM levels when tested because there body's response is like it is a new infection. I suspect this is probably the case, because as they just recently have proven, lyme bacteria can replicate in such a way producing baby bacteria with a different DNA - at that point our body would have to produce new IgM antibodies to fight this new version I would suspect. This could explain why the bacteria is so hard to eradicate in addition to it's slow replication cycle.

    ncgirl88

     
    Old 11-03-2004, 07:40 PM   #11
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    Re: The overlap of Lyme disease/MS/Chronic Fatigue Syndrome

    Igm in most infections indicates recent exposure but... in lyme igm can mean re-activation of a disease that lays dormant in cells then surfaces or is chronic. In most other infections the IGA leaves when the infection is cleared up. Possibly not with lyme. Its a controversy again...Docters fight about whether a present IGA after long term treatment means the disease is erradicated or if the body is confused and is reacting in an autoimmune response to the disease, thinking it is still infected. They call it post lyme syndrome.

    I dont believe in it myself but some people do. I think if you have an IGA your still infected. Just my opinion. But, i guess its possible considering what we saw with the effects of the lymerix and how lyme response can cause autoimmunity.

    I hope i know what im talking about feel free to correct me. My wording may be ambigious?

    So jac111 is right in his description.

     
    Old 12-15-2004, 01:23 PM   #12
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    Re: The overlap of Lyme disease/MS/Chronic Fatigue Syndrome

    I want to bring this up to the top again for further evaluation. I've decided that I am going to try some of the most successful treatments for Chronic Fatigue Syndrome and see what happens...what do I have to lose at this point, right? I've researched the works of Dr. Cheney and Dr. Teitelbaum and I've learned some interesting things. They both seem to agree on the fact that while an infection may have originated the disease, simply riding the infection alone will not recover the patient. They both recommend that sleep is the most important problem to tackle. I know myself, that I'm tired all day long and when I finally do feel like going to bed, around 1 or 2 in the morning, I never wake up rested...I usually feel worse when I wake up than when I went to bed. So a sleep disturbance may be a major complication here, especially since not getting enough Stage 4 sleep can definitely rob us of the rest we so desperately need. Even when we do sleep 8 hours or more, its not good, productive sleep. During Phase 4 of sleep is where we get the majority of growth hormone. Without it, we don't repair our bodies properly and the liver doesn't detox the body enough and toxins build up. This may have a lot to do with exercise intolerance and medication sensitivities! Dr. Cheney recommends the use of Klonopin and Dr. Teitelbaum sells his own herbal sleep formula you can buy. I already have some Klonopin, so I am gonna try just enough to get me proper rest and see if it works...if not, I'll try Ambien. Next thing I'm gonna try is something that will boost my immune system called undenatured whey protein. This stuff will raise levels of glutathione that is necessary to detox the body as well...our aren't supposidly aren't making enough and undenatured whey protein is the way to do it. Most people experience a worsening of their symptoms on whey before they get better as it detoxes the body...thought that was interesting...sound familiar? I bought some Immuneplex on the net so that should be coming in soon. Finally, I've heard a lot about Samento lately and I figured I'd buy some and try that as well. Supposidly has some very potent immune system building potential and is noted for having effects against Lyme Disease. Also heard great things about Cordyceps and Thymic Protein A. I'll probably give them a shot if the other things don't help. So, with that said, has anyone tried any of these things and how well did you fair? I'm curious...how many of you get a good full nights rest every night? How many of you wake up exhausted every morning? How many of you have virtually no tolerance to exercise? How about medication intolerances like caffeine and antidepressants?

     
    Old 12-15-2004, 03:43 PM   #13
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    Re: The overlap of Lyme disease/MS/Chronic Fatigue Syndrome

    Sleeperwoken, I don't know much about DMSO other than that as a topical is provides arthritic pain relief. It provides energy as well? And B12 can absorb well topically? Interesting...I have also heard some good things about bovine colostrum...i may try that sometime. Thanks for the info on the samento as well. I've heard that you can get reactions from it when you first start...did you have that problem? I'm interested that you say you also have extreme sensitivities to medications...that, I feel, has always been my most difficult problem...If i could only take certain medications, I doubt I would have to suffer so much...what did your doctor tell you causes this problem? I've heard that growth hormone difficiency may be the key to it...have you been tested for it? I think I'm gonna get that done really soon.

     
    Old 12-15-2004, 05:52 PM   #14
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    Re: The overlap of Lyme disease/MS/Chronic Fatigue Syndrome

    Hi SW and Lamotta - Interesting info. A friend of mine mentioned the sleep issue to me on the phone last night. She has a degree in some kind of biology and likes to research physiology. She said that it is of the utmost importance to sleep in the darkest room possible...no nightlights, room darkening curtains, no cats waking you up for their breakfast, and no clock radios even with digital displays, get the room as pitch black as you can - she mentioned something about the cascade of insulin and cortisol happening in Stage 4 sleep and how important it is to the immune system. - SW you have probably already read all this.

    Oh, I read somewhere - don't know if it is true - that DMSO is actually the precursor to MSM - but that didn't seem right to me...thought I would throw it out there though so you can research if you want.

    Let us know how the application of your therapies works SW.

    -ncgirl88

     
    Old 12-15-2004, 07:09 PM   #15
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    Re: The overlap of Lyme disease/MS/Chronic Fatigue Syndrome

    Hi friends,
    I apologize, I was not clear about DMSO. It doesn't give you energy, it boosts the effect of whatever you take with it by accelarating the medication's ability to get into your cells. B12 gives you energy, but it is hard to get it into yourself with pills. People get B12 shots, but I heard they are expensive so I am going to put the B12 with DMSO and hopefully get better results than just B12 alone. My doctor told me to drink the DMSO with my antibiotics. If I don't have any reactions to the topical DMSO w/B12 then I will drink DMSO with the abx and see what happens.

    I did have HGH tested last month. It was low. We did two tests-- blood and urine and both tests came back low. I do not do well with a lot of medications, I read all labels of everything I take and I'm very careful to learn potential side effects before I take anything. I did not have any trouble with the samento, I take it in liquid form and gradually increased the dose over time. 5 drops twice a day the first week, 10 drops twice a day the second week, 15 twice a day the third week. Gradual works well for me with a lot of things.

    ncgirl--you are right about the distractions at sleep time. I have two labrador retrievers in the room with me every night. Pets can be a real sleep deterrent. I'm gonna have to have a talk with them! They don't get to sleep in the bed with me though, that would be much worse!

    Hope you guys all get a good night's sleep. Sweet dreams, talk to you all again tomorrow...

     
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