Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Ears ringing, lymph nodes swollen, exhausted...

Discussion in 'General Treatment' started by acrosstheveil, Sep 10, 2014.

  1. acrosstheveil

    acrosstheveil Senior Member

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    Was diagnosed with lyme over 7 years ago. Been on all sorts of antibiotics and herbals over the years and stopped improving a couple years ago. I've tried the methylation protocol for a couple years now with maybe 5% improvement. I have severe allergies. My ears are ringing so loud and I am flat out exhausted all the time. My white blood cell count is always low. If this is not lyme what else could it be? leukemia? some sort of cancer? Any blood tests that I could ask for that may reveal a missing key?

    On top of that, I am now having to work an extra two days a week now. I was already dead just doing three. Someone help me!!!! I don't know what to do anymore. I have a very open minded doctor but we don't even know what is going on anymore. He keeps wanting to treat me for lyme but i'm thiiking what's the point if I never have any improvement? Any drugs that will help me?

    I weaned off benzos like 5 years ago and was finally feeling normal again. But now I've been prescribed gabapentin and temazepam and they provide so much short term relief it is so hard not to take them!!! Sometimes I don't even care if I get addicted again. I am SO miserable! Even the vicodin doesn't do anything anymore!
     
  2. Tired of being sick

    Tired of being sick Senior Member

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    I would keep treating the Lyme because I personally think Lyme is the underlying root/link to most autoimmune diseases..

    The fact of having a doctor who will treat CHRONIC Lyme over riding the CDC treatment process of 3 weeks of antibiotics and you're cured is actually amazing..

    Lyme can never be cured but it can be put into remission only with the right combination of antibiotics IMO..

    I wish I had a doctor who would be willing to treat me initially with antibiotics let alone long term..
    Keep in mind
    I also have a nasty habit of jumping to conclusions out of my own despair..

    I think this documentary will help you vastly and hit home..IMO



    Wish you the best on your quest to conquer your illness..
     
    Last edited: Sep 10, 2014
  3. acrosstheveil

    acrosstheveil Senior Member

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    yea but one would expect some sort of improvement after 7 years of all of the strongest antibiotics....

    somethings not right
     
  4. acrosstheveil

    acrosstheveil Senior Member

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    are there any good medications for pain besides opiates, gabapentin, and naproxen? I've heard of stuff like topamax but have never tried it. Is that good for pain?

    could this be mast cell activation disorder? leukemia?
     
  5. Hanna

    Hanna Senior Member

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    Have you been tested for the co-infections too and addressed them one at a time? If there are some additionnal bugs -others than Borrelia- perhaps you may need a more targeted treatment before seeing some improvement...
     
  6. acrosstheveil

    acrosstheveil Senior Member

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    yes, i have tested for coninfections and they were addressed....not sure why i'm still sick then.
     
  7. Daffodil

    Daffodil Senior Member

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    hi across. ears ringing and swollen lymphs sure sound like lyme. i wonder why you did not improve more. how much did you improve on the antibiotics? which ones did you take? did your doctor keep changing them every couple of months so you didn't become resistant or screw up your gut? do you have leaky gut? are you on a special diet?

    have you tried lyrica or cymbalta?

    have you taken antivirals?

    it sure is discouraging to hear that you did not improve much after 7 yrs of meds. i have been sick 21 yrs..i wonder if there is any hope ugh

    have you tried immunoglobulin?

    have you had thyroid etc checked?

    are your c4a and other inflammatory markers normal now? if so, maybe lyme isnt your problem anymore.
     
    Last edited: Sep 11, 2014
  8. zzz

    zzz Senior Member

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    There's always hope. I've been sick with ME/CFS for 24 years, and recently discovered a protocol that is causing me to rapidly improve. Within the last day, I've had an improvement of at least 25%. You just have to find the right treatment.

    That's my feeling.
    The Lyme parasite can do really nasty things to the nervous system, as I'm sure you know. If the nervous system is damaged enough, then it might not fully recover after your Lyme disease is either eradicated or put into remission. This is very similar to what happens with ME/CFS, where there's often a viral trigger, but the body remains in a dysfunctional state long after the virus is gone.

    Fortunately, this is treatable.
    If you've been addicted to benzos before, it's easier for you to get addicted now, and harder to wean off if you do. Benzodiazepines are not a long term solution for anything. And unfortunately, having the feeling that you don't even care if you get addicted again can make it easier for that to happen. If it does, you will sincerely regret ever having taken temazapam. I would strongly recommend getting off the temazapam, as otherwise it's likely to cause problems sooner or later.

    The gabapentin is not a problem; it's actually one of the best medicines for your situation. What dose are you taking? Gabapentin also has the useful quality that, more than any other oral drug, it makes it easier to taper off benzodiazepines. For sleep, I would recommend starting with melatonin; 0.3 mg seems to be the most effective dose, even more than higher doses. There are also several useful threads here on PR dealing with various types of sleep medications.
    Topamax can be somewhat helpful for pain, but there are many other medications that are much more powerful and that you should try first. These other medications can even be more powerful than the opiates without being addicting.

    I would strongly recommend reading this recent post; it seems to apply to you as much as for the person for whom it was originally intended. This will give you a number of options to consider, and hopefully get you back on the road to recovery.

    Finally, if your tinnitus still gives you problems, the best treatment by far I have found for it is acupuncture. It turns out that the acupuncture points used for tinnitus are some of the places where branches of the vagus nerve rise to the surface of the skin, and stimulation of the vagus nerve is also known to relieve tinnitus.
     
    Last edited: Sep 12, 2014
  9. acrosstheveil

    acrosstheveil Senior Member

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    i've been on rifampin, minocycline, tindamax, amoxicillin, zithromax, cefdnir, and many more that I cannot recall at the momet. Right now, I am on minocycline and will be resuming tindamax once I'm done trying these tinctures (can't have any alcohol with tindamax). I have tried lyrica and seemed to be allergic. I've tried gabapentin and it helped with some of the symptoms but had too many side effects that I could handle. I have tried cymbalta...I don't do well on any of those type of drugs.

    I'm off to the allergist now to do environmental allergy testing. I"m sure I'm going to be miserable later and they will find nothing that I already know. I don't think I'm going to keep this new allergist.

    have not tried immunoglobulin. My thyroid is fine. Haven't had a test for my immune markers in years but I am sure they are NOT normal. I still feel the same as when they were elevated.
     
  10. Daffodil

    Daffodil Senior Member

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    dr. burrascano says that chronic late stage lyme patients must take immunoglobulin to recover.

    have you had your IgG subclasses tested?
     
    justy likes this.
  11. caledonia

    caledonia

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    Try reading Roadblocks to Successful Methylation linked in my signature below. Ringing ears and extra tired could be signs of metal detox. Have you ever had mercury fillings or done a urine toxic metals test?

    I also have a bit of info for Lyme and methylation. Addressing ammonia is supposed to be helpful in reducing symptoms of Lyme.

    I'm two years into methylation and still detoxing metals. I don't have Lyme.
     
    Daffodil likes this.
  12. acrosstheveil

    acrosstheveil Senior Member

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    well the ear ringing has been going on for a while and have done iodin protocols, lipoic acid, and chlorella for years so I think i've already gotten rid of most of the metals. It seems to be triggered by the environment.
     
  13. acrosstheveil

    acrosstheveil Senior Member

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    how does one get immunoglobin therapy? is this something my doctor can prescribe for me? he is pretty open minded so I think he would prescribe it if I can get it from my pharmacy.
     
    Last edited: Sep 12, 2014
  14. Charles555nc

    Charles555nc Senior Member

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    Im seeing some very positive neurological improvement with amantadine for a suspected borna virus which Dr Burrascano is common among chronic lyme patients, Im going slow though, because Im getting some blurry vision from the amantadine.

    http://chronimed.over-blog.com/arti...onference-du-21-mars-2011-notes-88251682.html

    Basically I think Id get cured if I tried vancomyacin and vistide after this, to knock the viruses, mycoplasma, and lyme back down to little or nothing.

    We should talk, because I believe I read you tried vistide before, Daffodil? Seems like it knocks espein barr, hhv6, and cmv down to nothing. And Dr Burrascano says vancomyacin is the best drug for treating lyme.

    I might just call you on the phone if you are up to it.

    -Charles
     
  15. Daffodil

    Daffodil Senior Member

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    hi Charles..will send you a PM.

    I didnt know burrascano mentions vancomycin...but i havent researched this much at all.

    i did try vistide but because it cost my mother thousands each infusion and it was making me REALLY sick with the vomiting, i stopped it after 2 months. I had to travel into buffalo for each infusion and stay the night. it was such a total nightmare, i still don't like to think about it lol..basically, it was me crawling on the bathroom floor in a buffalo hotel, urinating, vomiting, and crying on the floor of the bathroom once the nurse left.

    i think most people have an easier time of it.

    anyway, my viral titres have never been high...so i guess the bacteria theory, and my response to antibiotics, is more appealing right now to me.

    i have spoken to 2 people who were really helped with vistide, and if your viral antibody titres are high, i would go for it.

    i really wish i had stayed on amantadine when i tried it years ago. it caused me such horrendous head pressure, i couldnt take it - and i can take pretty much anything at this point.

    i am going to look into the borna virus theory.

    i cannot say i am optimistic for a cure if you try vistide, but you might feel a lot better.

    xox
     
  16. Daffodil

    Daffodil Senior Member

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    hi across. well....if you have insurance and low IgG subclasses, that qualifies you for a CVID diagnosis (common variable immune deficiency) and your insurance would have to pay for the immunoglobulin treatment.

    there is also PID (primary immune deficiency) but i cannot remember what that one is.

    if you do not have these diagnoses, then your doctor has to fight the insurance company for coverage. otherwise, it is about $90 per gram. you can take anywhere from 1 gram a week to 30 grams a month I think. probably more is better.
     
    Last edited: Sep 14, 2014
  17. acrosstheveil

    acrosstheveil Senior Member

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    next time i see my doc i will ask him to test my IgG levels. took one sleeping pill the other night...didn't do anyting so I took another and still didn't work. Now i can't sleep the next night....god i hate this. and my ears are ringing louder than ever.

    could barely stand up at work all day today. and all the people are looking at me like I'm a lazy person.
     
  18. acrosstheveil

    acrosstheveil Senior Member

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    the gabapentin gives me severe anxiety the next day and the days after. doesn't really seem worth it to take it. don't know why i have a problem with it. it does help a ton while its in my system. wish i didn't have the rebound anxiety from it.
     
    Last edited: Sep 19, 2014

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