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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Hypoxic Brain Damage Swollen Lymph Nodes, Toxoplasmosis, Bacterial Infection, Head Numbness

Discussion in 'Cognition' started by physicsstudent13, Jan 9, 2015.

  1. physicsstudent13

    physicsstudent13 Senior Member

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    I've had neck swelling for 2 years and the back of my head went numb from loss of blood flow and I was disfigured and lost my sight from Bell's Palsy. I began taking rocephin+gentamicin+clarithromycin and for 8 days I had neck pain and the swelling went down some. I am waiting for a Lyme Elisa test and have been disabled from brain fog and central apnea, PLMD seizures, hypnic jerks. I tested positive for toxoplasmosis with a Titre level of 35.1 but the terrible doctor wouldn't treat the infection
    what kind of infection do I have?
    I think the terrible hypoxia and lack of blood flow to the brain is from the swollen neck/lymph nodes, maybe it's the cervical lymph nodes at the back. aren't the tonsils supposed to drain into the neck lymph nodes?
    Thanks so much.
     
  2. Martial

    Martial Senior Member

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    Definitely sounds like lyme and co infection to me. An Elisa is a terribly inaccurate test to diagnose lyme by the way. You would want to either get a western blot test done by IgeneX or have another lab run a PCR smear checking for spirochetes.
     
    physicsstudent13 likes this.
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    We can't diagnose you here, sorry.
     
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  4. physicsstudent13

    physicsstudent13 Senior Member

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    Thanks very much!!! I am starting to feel normal after taking rocephin+gentamicin+clarithromycin. it is really horrific my whole head went numb and the back of my neck was swollen from lack of blood flow to the head and I've been suffering with this for years. I had these horrid sleep disturbances and my oxygen level would be dangerously low and I could never cure it
    I should really get more Lyme's tests maybe I will do a lumbar puncture.
    how can you prove a Lyme's diagnosis is PCR smear or Ingenix enough?
     
    Last edited: Jan 10, 2015
  5. physicsstudent13

    physicsstudent13 Senior Member

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    they only ran the Iga Igm and I had a level of 0.11 so I need to find a way for insurance to pay for these tests? terrible how manipulative these people are
    the terrible doctor at NSLIJ refused to do the western blot so now I might need to travel 2 hours by bus and train to see an infectious disease doctor at Columbia

    I still have head numbness in the back and sleep disorders and brain fog. then I got terrible facial palsy, I only had RBBB once on an EKG. I remember I was bitten by something in the ankles that seemed to be a tick, I smeared it away but it was too late there was bleeding everywhere

    is this a safe and effective treatment?
    http://www.lymediseaseneogen.com/
     
    Last edited: Jan 11, 2015
  6. physicsstudent13

    physicsstudent13 Senior Member

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    I was bitten by a mosquito in Asia and right after I began to have terrible migraines the pain was so bad I couldn't stand up and barely made it to the hospital. They put me on 3 days of IV cipro/flagyl which didn't seem to do anything I was terribly nauseous and vomiting and then 1 year after I developed these seizures, sleep apnea, and asthma

    there is something really messed up with my lymphatic system in my back and neck because I keep getting infected abscesses on my upper back and the swollen neck which cuts off blood flow to my brain
     
  7. Martial

    Martial Senior Member

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    Lyme disease actually resides a lot in the lymphatic system and can definitely do the things you mentioned, if you got bit in Asia though I would also look into other vector borne co infections on top of the Lyme disease. At least you already started treatment which is a great start.

    http://news.ucdavis.edu/search/news_detail.lasso?id=9922
     
  8. physicsstudent13

    physicsstudent13 Senior Member

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    wow what a terrible awful disease dear friend. I took 10 days of rocephin and had more clarity and energy but now am much more foggy/tired after stopping it. I'm not sure if I should try ampicilin or flagyl
    I had a head CT done and it showed no infarcts
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3551238/
     
  9. eon

    eon

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    Wouldn't just getting on medications like Atovaquone for Toxoplasmosis work? Where can I get this? It's an anti malarial drug. Also, for both Toxo and Lyme disease the powerful antibiotic minocycline is said to be the cure all. Minocycline is said to be anti inflammatory and neuroprotective as well. I've never tried it to know, but I'm looking for a cure that has less side effects. I think BACTRIM also works for the diseases mentioned here.

    Is it wise to use a pro/pre biotic supplement while on antibiotics?
     
    Last edited: Jan 22, 2015
    physicsstudent13 likes this.
  10. physicsstudent13

    physicsstudent13 Senior Member

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    yes I think malarone or atovaquone can kill toxo infections according to wikipedia...

    I was on minocycline and it may have helped, but isn't rocephin a more effective antibiotic. I went on rocephin and my neck began to hurt and I think it drained the swelling.
    I don't like probiotics because you are just introducing large amounts of unknown bacteria

    I think I have MRSI, I tested positive on a culture for staphylococcus (aureus?) and pseudomonas luteola
    http://en.wikipedia.org/wiki/Minocycline

    by the way I would not do any ozone treatment, ozone is a toxic gas
     
    Last edited: Jan 22, 2015
  11. eon

    eon

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    what's an ozone treatment?

    where do you buy minocycline?

    I think Cycloferon is said to work against Toxoplasmosis, but I don't know yet if it's an antibiotic or what. It's an interferon inducer. I'm not sure if this is primarily a European drug only.

    I forgot to mention that my doc in the past told me I have a cyst under the cartilage of my nose. This could be due to herpes or something else. Could the cysts present have anything to do with Toxo or Lyme by any chance?
     
    Last edited: Jan 23, 2015
  12. eon

    eon

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    rather than trying out different drugs to see what works, I'd prefer to get to the bottom of the problem. If anyone can help me find some minocycline or Atovaquone let me know. Some pharmacy based in India I inquired about is selling 300 pills of minocycline for $500, I said I didn't need that much supply. I'd prefer a strip of medication good to use in a short amount of time (say a week or 2) that is guaranteed to kill all parasites.

    Does anyone here know of a good book to determine what dosage and what length I should be on such drugs? I'm familiar with Physicians Desk Reference book but the reviews aren't too good. Who knows of another good book?

    Physicsstudent, you should know of such book! LOL.
     
  13. eon

    eon

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    by the way I think Atovaquone can be skipped if taking Minocycline as Minocycline alone can work for Lyme and Toxoplasmosis. I'm just looking around to find information on how long must a person use this antibiotic for. I know 100mg twice daily can be used long term for years, but I don't plan on being on it after the diseases have been killed.
     
  14. eon

    eon

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    I looked up how to treat Toxoplasmosis with Atovaquone on drugs.com and the dose seem high (750mg) and the length of treatment as well 2-6 months. Maybe I'm naive considering the most I've ever been on antibiotic was about a week. Then again Minocycline is said to be ok to take daily year round. How do you know when to stop exactly? I'm trying to find out so I can buy just enough amount to last me for the entire treatment as I do not want to have extra pills hanging around unused and set to expire.
     
    Last edited: Jan 28, 2015
  15. physicsstudent13

    physicsstudent13 Senior Member

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    I got a script of minocycline from my doctor, but he only gave me 1 week, I think it worked for the infection I had. But wikipedia says atovaquone is the treatment for toxo.
    I think I'm more worried about the calcified granuloma in my lung and TB/mycoplasma infection
     
  16. taniaaust1

    taniaaust1 Senior Member

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    The absesses on your back have you had them swabbed to make sure they arent staph infections? I used to have a friend who used to get infected absesses over his legs, they turned out to be staph.
     
  17. eon

    eon

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    What was the minocycline script for? So 1 week at what dose? 100mg or 200mg daily? Minocycline also is said to work for Toxo as salvage treatment.

     
  18. eon

    eon

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    where do you get these tests? The doctor?

     
  19. Sidereal

    Sidereal Senior Member

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    What does your doctor say you have? What are the diagnoses on your medical records?
     
  20. eon

    eon

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    Me? Originally psychotic disorder (everything else goes with it OCD, depression, anger, etc.). I truly believe I had some Toxo considering I loved cats as a child. I also suspected of Lyme disease considering I live in the Northeastern part of the U.S. where it is most prevalent. I just got my insurance and I'm trying to get some tests done to get to the bottom of all this. So do I talk to my doctor about Toxo or Lyme disease and would he know what to do next? I understand some of them have never even heard of these diseases depending on their specialty. My doc is an internist.

    Would a Western Blot test reveal any toxo or Lyme activities?

     

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