Sick for 2 years...Test said negative for Lyme...I believe it still may be positive...Help!!!

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Hello All,

I NEED HELP...I felt normal...I was 38, I ate healthy, ran 3- 5 days a week, happy until one day I wasn't.  2 years ago in March I woke up and everything had changed:

Dizzy...nothing spinning...Loopy feeling

Head Pressure

Chest Pressure

Right eye's vision changed 

Body hurt as if I did a crazy workout

Brain Fog/ memory loss

Anxiety / nervousness...probably because my body's in stress

I can't run anymore ( the pressure in the head is to much) 

I have been to EVERY doctor...had MRI (head/neck), MRA, Lumbar puncher, Holter, EKG, Vision test, Hearing Test, Blood work, X-rays

Seen Chiropractor, Acupuncturist, Holistic doctos

NO ONE can help me...This is what I know

I have EBV

RBBB and left anterior fascicular block ( electrical problem with heart)

Optic neuritis 

Low Ferritin...took iron pills but still can't bring levels up

Thyroid is being attacked

This is the question?

I got tested for Lyme...it said...

lyme western blot...negative

bartonella...negative

babesia...negative

anaplasma phatgocytophilum...negative

coxsackie...negative

babesia wa1...negative

On the stripe...Borrelia B31 IgG

41 was 257 and 39 was 050...it says must have 5 bands and over 60

On the stripe Borrelia B31 IgM

41 was 27 39 was 30 and 23 was 54...it says must have 2 bands and over 60...however 39 had a half shad over it...not sure what that means

I feel horrible and just want me be better...when the answer isn't clear doctors brush you off...has any one felt like this?   Had these test results?  Any direction is better then no direction...Thank you in advance!

 

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  • Posted

    Lyme disease tests are definitely not 100% accurate. Some doctors will still treat for Lyme disease even with a negative test to make sure. Are you in the UK or USA? Another thing to consider is Biotoxin illness. Symptoms are almost the same as Lyme. It effects all body systems and causes inflammation. There is an online symptom checklist test you can take to see what the chances are that you have it. I would not give up, I'd try a different doctor yet until you find a doctor who is willing to find the cause instead of just treating the endless symptoms.

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  • Posted

    You are not alone. I’m searching for answers too. Problem is there are so many diseases that mimic these symptoms. Just out of curiosity. Do you have digestive problems too?  Like not digesting foods entirely?
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  • Posted

    Hi denisemomof4

    My daughter tested negative also for lyme disease but does show co-infection of coxsackie virus b, so i started to look into herbs for her.  She was very sick with flu like symptoms.  Body aches, headache, swollen joints and painful. Heart problems: complete heart block/bradycardia/low heart rate. (35-42) sleeping 35- during the day 42.

    One of her doctors put her on antibiotic and all the symptoms cleared up except for the heart problems, and the coxsackie.  I have a doctor that wants to do IV vitamins. (Myers Cocktail)  Not sure what to do yet.  So, I started using herbs and her heart rate is increasing. (53-70) sleeping 43- daytime 57-70. I have to do more research on the iv vitamins. (as for the herbs just looked up lyme disease and herbs, there are a lot of stuff out there and forums too.) Praying for recovery for all of us.  

     

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  • Posted

    Hi Denise,

    My case exactly. The ELISA was negative, IF Mosaic Borrelia and Westernblot was negative. However, my holistic doctor (who was the one to diagnose it after almost one year of having symptoms and every doctor i went to saying that i don't have anything and i'm healthy) recommended to have a Dark Field Microscopy. This is a test (not accepted by most of the "normal doctors) that is done manually (the doctor watches the blood through a microscope ) and it shows if you have spirochetes in the blood or not. Simple. Those  spirochetes can be borrelia, bartonella, babesia or even syphilis. The westernblot is positive only if the sum of the bands is above 60. There are around 20% of the lyme infected patients that have negative results on the tests. But this doesn't mean they don't have the disease. Only the their immunity doesn't "recognize" the disease. If the P41 band on the westernblot is above normal that is a clear indicator for borrelia, even more precise borrelia garini (the type of borrelia). I have read all the treatment and diagnose protocols from US, Europe (Germany) because 3 infectious diseases doctors told me that i am crazy and the Dark Field Microscopy is not accepted as a diagnose procedure. I asked: how are those spirochetes present in my blood? Why are there? Is it normal to have and live with    spirochetes in the blood? Nobody could answer me, they kept telling i am healthy. I am from Romania (Europe) and here there are only 3 doctors who treat this disease and diagnose correctly. The rest of them are rejecting this disease and just idiots. In the end, i am being treated by one of those 3, just started round 2 of antibiotics combined with something against parasites and A LOT of herbs and vitamins to lower the impact of the symptoms and support my body during the treatment. The doctors do brush you out because this disease is hard to treat, you have to have experience and takes time. Also you have to keep in touch with the patients to be able to change the treatment in case it doesn't work or the body just doesn't tolerate it. Find a Lyme specialized doctor and also a holistic one (with experience in lyme disease) so that you can receive the proper treatment. And cheer up, there are bad days but also a lot of good ones. Try eating more green stuff (fruits, vegetables) and lower the amount of animal proteins (meat, milk, eggs, cheese). They produce toxins who can increase the symptoms.    

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    • Posted

      Hi Alexandra...very frustrating!!!  Your right not many doctors will look at you...I've been through the ringer and no one WANTS to help.  If a test came back positive I think my outcome would have been different.  They wont give me antibiotics without a positive read. Good luck to you...I hope the treatments work!

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    • Posted

      Dear Denise, 

      As i see it you have two options. First:you take on your own a herbal treatment meant to increase very much your immunity so that the body starts fighting and identifying the disease. After one or two months you repeat the tests and they may be positive. The tests came negative because your body doesn't recognize the disease. My doctor did the same thing for me. She gave me: Vitamin C, Cat's Claw, Chinese Reishi, Alive, System Well Ultimate immunity, Golden Seal, Ashwagandha in high dossage. Most of them are produced by Nature's Way which is an American Company and you find them.   

      Second: you find a holistic doctor who treats lyme disease (has experience) and he can make you a treatment scheme for the disease and also to lower the impact of the symptoms. There are a lot of very good natural antibiotics like the wild oregano oil. I took it for 3 months and felt really good. 

      Don't give up. Try finding other doctors specialized in Lyme Disease and get other opinions. PS: there's always antibiotics in Mexicosmile 

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