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Old 06-15-2009, 07:08 PM   #1
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Dr. says I have LYME DISEASE HELP!

hey all,

so 3 years ago i got pretty sick after i had knee surgery. was 23 years old at the time and i got vertigo problems and such, as well as lots of food allergies, thyroid problems, that i've had since.

i had lots of tests done, one being a Western Blot which came back boderline positive, mainly the IgG..

So fast forward 3 years later still suffering from food allergies, and some skin allergies, (allergic to clothing sometimes) and psoriasis type stuff, thyroid, etc.).. seeing a really good doctor for Lyme, who you probably know, but he did another western blot on me and says its positive, with the IgM antibodies coming back more positive than my last test.

i had this test done when i had pneumonia which the doc said can not cause a false positive in the bands he was looking at and if anything made my immune system produce more antibodies to the lyme because it was hyped up from the pneumonia, thus causing the more positive western blot.

now i dont have the typical lyme symptoms, and the doc said if i've had the lyme since i was small (never remember getting bitten by a tick but played in tall grassy areas a lot) my immune system has done a heck of a job keeping it at bay.. but i can't help but to have doubts... i mean, if this doc thinks i have lyme should i trust him? i have had some weird ailments and it would make sense.. just confused, concerned, need some input from people who have been in my boat..

how long does lyme take to go away? i think the main concern was that there's no real clear answers with it... the doc was saying lots of things can cause problems that lyme can cause, so its hard to say if the lyme is doing it until you get treated, then see what resolves itself.

I'm more concerned with how reliable the western blot is.. i'm sure the doc knows what he's talking about..just kinda hard to accept when i dont have the classic lyme symptoms.

can anyone offer anything on this subject.
thanks a bunch
scott

 
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Old 06-16-2009, 03:37 PM   #2
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Re: Dr. says I have LYME DISEASE HELP!

Why knee surgery so young? Injury? Lyme loves the knees.

Lyme testing not conclusive, docs are supposed to go on symptoms not just testing. Fatigue,vertigo pretty common with Lyme. The infection wrecks the immune system, allergies develop, it affects the endocrine system, thus the thyroid problems.

Rashes do not have to be bulls-eye. I developed a bug bite like rash in clusters on different areas of my body many years after I was probably infected.

Why do you have pneumonia at such a young age?

Weird ailments, again Lyme is the great immitator and can cause puzzling multi-system problems.

Lyme may never go away but go into hiding. A strong immune system may keep it under control. Some people may be able to keep it in check until another stressor occurs, either physical or mental....surgery, another illness,

I was diagnosed with Chronic Fatigue 20 years ago. I had strange symptoms come and go for 20 years, allergies, rashes, back pain, knee swelling, headaches, inability to recover from a simple cold

I kept going until getting a viral illness December 2007 then all he** broke loose. I will never be 100% well, of course I am much older than you and the Lyme went unrecognized for many years.

Is the doctor you are seeing Lyme Literate? You need to start doing some research on Late Stage Lyme so you can help assure you receive proper care

 
Old 06-17-2009, 06:06 AM   #3
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Re: Dr. says I have LYME DISEASE HELP!

Hi Scott, I am glad to hear that you finally have a diagnoises. Yes you truly need to trust the doctor you are seeing. He is one of the best. Like I said before, doctors that treat lyme are contstanly being watched. You have a positive Western Blot then you are truly one of the lucky ones. So trust your doctor.

It has taken me 10 years with proper protocol such as supplements, antibioticcs, antivirals ect ect ....to be where I am now. This is the first year in 20 or so years that I am up and not down in bed, and talking with people, working a non stressful job, playing in the yard, taking wonderful walks ect. Been going through this for atleast 29 years.

Did you get tested for Chlamydia Pnumoniae, Mycoplasma Pnumoniae, Babesia, Bartonella, Erichliosis and the viruses that seem to run rampent when our immune system break down...Epstein Barr, Cytomeglovirus, and any of the other herpe family???

No offense but your symptoms aren't our of the ordinary. MANY people have surgeries because doctors think there is something going on inside. I do tend to wonder what they fix when they get in there when it is bacterial or viral related...hmmmm.

What protocol are you starting off on?

You need to remember, you "Do Not" always need to be bitten by a tick to get lyme. There are 300-400 different strains of lyme. It is passed thru Sex, blood transfusions, Your Mother or Father could of had it, Mosquitos, any type of biting insect.
So in other words it is possible that you were born with it.

The more you read up on all of these bacterias and viruses, protozoa's, microbacteriums the easier it is to understand that everyone has some critter or critters living in them. We have warm bodies and we are a hosts for them to live in.

Let us know how it goes and were all here to help if you have questions.

Jodie

 
Old 06-17-2009, 01:41 PM   #4
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Re: Dr. says I have LYME DISEASE HELP!

Actually my knee surgeries were from athletics.. torn acl and meniscus.

the health problems started after my last knee surgery when i was 23.

As for the western blot test i actually have the results if you guys care to see them. its good to hear i can trust the doc i'm seeing.. it's hard sometimes when you get told something like this.

IGM bands that came back positive were 31kDa +, 39kDa IND, 41kDa +++, 58kDa +, 66kDa ++ and 83-93kDa ++.. I know some of those are lyme specfic and some arent. The doc mentioned the 83-93 bands are very specific to lyme, something like 92% of the time they show up in lyme positive patients.

IGG bands that came back positive were 31kDa ++, 39kDa IND, 41kDa +++, 58kDa ++.

He also did a test called an IFA. Lyme Immunofluorescence Assay which came back IND. it was on a scale of 1:40 - 1:80 .. mine was 1:40. He didn't really talk about that, probably didn't show much.

I was also curious.. The office had me sign something about how I'm taking antibiotic treatment, or I want to treat the lyme with antibiotics. I had to check a box and sign the paper.. What was that for? In case i kick the bucket while taking the antibiotics?

My protocal is starting out with Biaxin, and taking some supps for my immune system that target Lyme. I forget what they were called, but they were from a company called Nutrionals something.. or something like that. He said that he didn't want to just dump me with hard antibiotics because he said it wouldn't do any good especially since i've probably had it for a while.

Thanks for the help all
Scott

 
Old 06-17-2009, 04:40 PM   #5
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Re: Dr. says I have LYME DISEASE HELP!

Scott

I suggest you look up the ILADS site, it will explain testing and also their treatment recommendations.
You signed a paper giving consent to antibiotic treatment with the understanding it may not cure you and you may have side effects.

There are no guarantees that Lyme will be "cured" with antibiotics after a patient has it for a long time. It hides in cells, muscles, tendons. It may be why you injured your knee, it weakens tendons and ligaments. Then the stress to your body from a surgery weakens the immune system and lets the infection come out in full force.

Keeping the immune system strong is a major key to keeping the infection under control. I cannot take antibiotics, have had allergic reactions to most every one over the years but I have done well with homeopathics, herbals and supplements to support my body and my immune system.

Every patient has different symptoms, different responses to treatment, different outcomes.

Good luck with your treatment

 
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