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» LymeNet Flash » Questions and Discussion » Medical Questions » many questions on Lyme for the experts

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Author Topic: many questions on Lyme for the experts
MOSue
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Member # 9570

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I am so new at this, guys!!! I have written to a couple of you privately, so I guess now I am going to come here.

We live in Missouri and recently returned from a Colorado vacation. While we were out visiting, my bro in law who is a holistic chiropracter, mentioned he'd read a article on autism and Lyme. One of my children has autism/bipolar and my other child has profound mental retardation and seizures. Both in their late teens.. He muscle tested all of us and he highly suspected Lyme, and so sent my blood to Bowen in Florida, which came back as 1:128 (serial dilution(Q-RIBb) and buffy coat smear). They did not see any co-infections. We are currently awaiting results on a Elisa and Western Blot(done together) through a infectious disease doc at Washington U. I am hoping and praying something shows up. " There is no Lyme in Missouri" Yeah well I am a camper, and I have lived in 3 states and traveled in New England in the past. I could have gotten this anywhere. I could go on and on about the kids and the symptoms. But the main thing is despite the arthritis and memory issues, and my kids disabilities, I feel ok so I am not appearing sick, so it's hard to convince anyone even the great Washington U infectious disease guys who supposedly know Lyme(Yeah right)that I have this and need more testing done. If the latest labs come back neg I'll keep looking for a Lyme friendly doc in estern Missouri. Do ya'll have any other advice for a newbie? I may have had this a long time and things are just now surfacing. I am 50. Thanks, MO Sue

Posts: 11 | From Missouri | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
mycoplasma1
LymeNet Contributor
Member # 6377

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Borrellia is EVERYWHERE and can be transmitted MANY WAYS (found in tears, semen, urine etc..). This is why everyone tests positive on Bowen. Lots of people carry Borrelia and never get sick with it. For some it takes a blow to the immune system (prolonged stress, an accident).

You have to think in these terms.

Posts: 216 | From Upstate NY | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
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There's plenty of Lyme in Missouri. You have one of the best docs in the country in MO. I'll send you a PM.

I don't know that much about the Bowen test. Did they say that was positive??

The tests the ID duck ran probably won't show much. If they DO, then take it for gospel!

The best lab for Lyme testing is Igenex in CA. www.igenex.com

You can get another dr to send that in for you. You'll have to order the kit and take it to your dr.

Lyme is likely connected with autism, but it could also be celiac disease causing the autism...so check that out too.

 -

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94483 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
BBWagoner
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Hi,
I am so sorry with what you are going through. But I did want to let you know I live in Illinois and my husband and I, and my kids have lyme. My children are doing much better but my husband and I are still in treatment.

We do live on 16 acres of wooded land.

I was at Barnes with the best doctors and they were on the wrong track. I received huge/multiple doses of IV steriods and I wasnt getting better. Thats when My doctor looked at me and said I dont know what to do, I need to get a couple of other doctors together to help scratch there heads to figure out whats wrong with you. I was told that there was no lyme in this area.

I knew that something had to be wrong. Here I was 26 with two kids and just kept getting worse.

I lost my vision, use of my right arm and couldnt walk. There was multiple other things going on but i will just list a few.

Through months of aggravation, I talked with a neighbor who has lyme and was in treatment. Our symptoms were so alike. She refered me to a LLMD who is wonderful.

There is a lyme literate doctor in springfield MO. Dr. C.


If you want more info on the doctor let me know I will give you his number and address.


I am now back to work, can see, can walk, and have full function of my right arm/hand. I still have some problems but compared to last year this time I have had Great improvement!!

Good Luck!!!

Posts: 61 | From ILLINOIS | Registered: Nov 2005  |  IP: Logged | Report this post to a Moderator
Lymetoo
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up

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94483 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
lucy96734
LymeNet Contributor
Member # 8372

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I had the Bowen test and had the same result as yours. My LLMD doesn't really think much of that test (I had it done by a naturopath who was trying to help me find my way after running in circles for 5 years). At least she ended up sending me to my LLMD and he has changed my life [Smile]

My co-infection test with Bowen was also negative. My LLMD said that the co-infection test on Bowen is NOT to be trusted but that most of the 1:128 results correlate well with postitive WB.

I do have Babs according to the Igenex test and my symptoms so I would recommend further co-infection testing.

Good luck! Find a good LLMD, that is the best thing you can do.

--------------------
Lucy

Posts: 342 | From Hawaii | Registered: Nov 2005  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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OH NO!

ANOTHER big old corn fed Missouri mule!

YIKES!

[Big Grin]

Welcome to you, Sue!

Glad you took the plunge and decided to hop on board. Sounds like you are also getting a good education so far. Good for you!

Tutu.. bless her little old corn fed mule heart... will be your best source for Missoui doctor info... and lots of other good stuff. She is a darling.... but do watch out. When she is wet and left in the barn all night.. she tends to develop quite a stink.

But we DO love her ya know.

[Big Grin]

If there is anything you need... be sure to ask.

Oh.. and don't miss this- Tree has a very good list of links to help new folks.. so I would imagine you'll be reading quite a bit in the near future.

Good to see you and hope your family has some answers soon.

Welcome aboard!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20318 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
   

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