posted
I am a 21 year old male and I have been sick since the age of 9. I am a text book case of lyme disease. My problem are primarly (pscyhological/neuro), include extreme fatigue, Memory loss, Brain fog, Slurred speech, Nervousness, stiff neck and lower back pain, Social anxiety to the point where i cannot handle social situations and fibromyalgia, and painful mygrains atleast once a week and thrush on my tounge. I was born completely healthy and now i have descending into a dementia/zombie like state. I work at a hospital as a patient transporter and my coworkers think i have autism because i never interact with anyone. I lived in Poland (europe) for 10 years before moving to the states. I remember the last summer camp i went on in poland i started having flu like symptoms followed by a fever and swollen lymph nodes and my health started to deteriorate after that. The following year every muscle in my body ached like i just lifted weights. I was tested last week for lyme with a western blot and elisa test and they were both negative not one band showed up with the western blot. My concern is that in europe B garinii and B afzelii are just as prevelant as burgdorferi. Since B garinii and B afzelii have not been isolated in the states they dont culture and test for them and the western blot does not cover the european species. So how do i go about proving to my doctor that i still might have lyme disease and get some type of treatment before i go insane, and cannot help myself.
Posts: 6 | From Chicago ill | Registered: Nov 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Sneak,
You sure have the symptoms of lyme. Post in the "Seeking a doctor" section of the forum. There's a pretty good lyme doc in Chicago. I can also refer you to one farther north. No doubt you'll need long-term abx, and it's doubtful whether your GP will be willing to precribe for the duration that it'll take to get you well.
Just want to add, forget the tests, many long-term lymies test negative, it's common.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Hi Sneak, I agree with NP40, you simply need a LLMD who is willing to treat on a clinical diagnosis. From the more experienced LLDM, that should not be a problem. Follow NP40's advice, and if the first LLMD is not receptive, try another one.
You have classic symptoms and medical history (from the sound of it). Go for it!! Ernie
Posts: 546 | From Cascadia subduction zone | Registered: Mar 2002
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Someone on Eurolyme may be able to help also
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
You should either:
1) Research labs that can gets for those strains in the US. I am sure that there are some. Contact www.Igenex.com and ask them if they do or can refer you. 2) Research labs in Europe and see if you can send your blood to them. OR 3) Try the Bowen test which I understand tests for Borrelia in general, and not the burdorferi-specific strain. 4) Contact Dr. K at www.neuraltherapy.com and ask his office for guidance. He is a German doctor and knows of these other strains.
Good luck
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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It's the best in Germany and - as far as I know - also the best in the rest of West, South and North Europe. Maybe there are good ones in East Europe - don't know.
Gabrielle
Posts: 767 | From Germany | Registered: Feb 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
I don't think it makes any difference whether it's a European form or otherwise. These bugs are worldwide and are not living in cloisters. There are so many mutations of all microorganisms - trying to sort this out is not possible.
I would also suggest as some mentioned above -- go and find a doctor that understands Lyme with all its intricacies and get treated.
Read the article/speech of my doctor at www.neuraltherapy.com/articles/"Lyme Disease: A look Beyond Antibiotics." Both my husband and I have gotten well from severe Lyme following some of the regimens mentioned in that article. You might also want to read some of Dr. K's other articles on that site and you will learn a lot that took me years to figure out.
Good luck to you, Sneak250, - and put your big thinking cap on ------- ! It's the only way to conquer this disease and what comes with it.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I agree with GiGi here. I find it upsetting that so many people don't do the research that it takes to get well. It is like a cross-country trip. You have to have tools, maps, ask people for directions, etc. to get from point A to point B. You can't just get in the car and hope you arrive at your destination.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
just want want to add my 2 cents here if you can afford, get yourself tested from Bowen labs. My wife who moved to US 3 years ago from asia, had negative MDL WB test. but later we used bowen labs and her result came out +ve, showing highest level infection(1:128). You should also get your hair analysis done for heavy metals toxicity from GSDL labs in north carolina.
Posts: 23 | From PA | Registered: Nov 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Just a note here regarding hair analysis for heavy metals:
You should also get your hair analysis done for heavy metals toxicity from GSDL labs in north carolina. -------------------------------------------------------------------------------- If any of you have a hair analysis, be sure that you interpret it properly. If you show no heavy metals, that does not mean they are not in your body. It only means that your body is not capable of releasing them.
For an informed physician, the general mineral picture of your test will tell him whether you are heavy metal toxic. Most doctors are not able to do that unless they are really up to snuff on heavy metal toxicity.
You should do a heavy metal detox for a few weeks, then do the hair test. If something shows, you know you have metals and that your detox is working and that they are coming through. There is no way to tell how much remains in your body - not via any test. A urine test is inconclusive. Because if the metals are stuck, they are stuck until you get treated with a good detox program.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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How do you detox for metals? I have had a 24hr urine test done and the metals were all very minute.
Posts: 649 | From United States | Registered: Dec 2003
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posted
GiGi I totally agree with you what you said in your post.
Please enlighten me, if heavy metals show up in your hair analysis report then what do they mean ? heavy burden ? I read somewhere that heavy metals in hair analysis report indicates chronic exposure is that right ?.
thanks
Posts: 23 | From PA | Registered: Nov 2004
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Hi Gigi, I'd also like to know how to detox from heavy metals. Apart from foot pads someone suggested here, is there another way?
thanks Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I use both NDF and PCA-RX alternatingly, but heavy metal detox should always be done with a doctor.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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People from the UK often send their blood over to the USA and get tested from Igenix or Bowen. We've been told to ask for European strains to be tested.
Cheers, Carol
Posts: 2 | From UK | Registered: Sep 2005
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