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» LymeNet Flash » Questions and Discussion » Medical Questions » Who knows about FL1953 symptoms

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Author Topic: Who knows about FL1953 symptoms
nefferdun
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I am thinking about getting tested but don't want to waste the money if it doesn't sound like I have it.

I have been so tired with more and more brain fog. Sometimes my lower legs ache.

Also, what are some of the drugs you can take for it?

I treated babesia all last year after a positive test. In the fall my test was negative but my blood work indicates blood parasites and Bb. Could it be something else? I do not have all of the babesia symptoms I had before.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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up
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hansemand
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bartonella?

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hansemand

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nefferdun
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It is similar to babesia but that is all I know. Some people take ivermetrin. Some people take plaquenil. I don't know which works best.

Maybe bart is coming back out too. I have been extremely irritable.
I don't know if the way I feel is like it was when I was treating bart though. My brain feels numb. It is so hard to focus and remember.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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tickbitt
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I think a lot of people have it with very few direct symptoms from the parasite itself.

I think the biggest effect it has is in providing biofilms to hide all the other infections in. Without this bug building biofilms it should be much easier to eliminate the others.

My personal guess is that we - as a TBI community - are in the process of discovering that this bug - and perhaps a few others like it - are the reason we take years to get well.

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nefferdun
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I guess I will just get tested then.

Reading through the methyl cycle mutations, the most common one is treated with a vegan diet, so I am vegan now.

I can't tolerate the drugs forever. I need to find out what is blocking me from getting well.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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hadlyme
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It's like bart, babs and lyme. All symptoms you would have for any of those. And treatment is about the same.
I am on zith, diflucan, malarone. I was on that to treat babs also.
LOW FAT DIET is the difference that we do with this.
Some people are herxing on low fat diets without drugs even.

Think of what we've called lyme and company really a SOUP of all sorts of parasitic/protozoans.... they all can give us the same type of symptoms, and can be treated about the same.

You want to do low arginine, or good lysine/arginine ratio with food, and go easy on the nightshade veggies for muscle pain.

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Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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nefferdun
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Thanks hadlyme.

I looked up foods with high arginine and the puts a big hole in my world, but if I just balance the lysine, then I think I can do it.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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kelmo
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I agree, nefferdum, when you are already eliminating so many foods, and are going vegan, taking out those with arginine leaves you very little to sustain your body.

We supplement with Lysine, as well.

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nefferdun
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kelmo, are you doing the Fry diet? If so, are you seeing improvement? I hope so.

I was wishy washy before. In fact 4 days ago, someone came by selling fish and I bought a whole box full. I haven't eaten one piece. Before, fish, eggs and cheese was allowed in my diet, but that was it. Now according to the arginine restriction I cannot even have my staples; beans, rice, nuts, seeds. Where does the protein come from?

In addition to that I am being tested for the methylation pathway mutations and am nearly certain that affects me. I cannot have foods with sufate like broccoli, cabbage, brussel sprouts etc.

Many supplements I thought were helping are hindering, like NAC and B100. The things I thought were so good for me may not be.

I tell you EVERYTHING has to be carefully studied.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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tricia386
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Well, my LLMD (famous one) when i asked if I should get tested he said, why bother everyone is testing postive for it. And that its all about breaking down the bioflims. He said that also it would be impossible to do the low fat diet and its unrealtistic with all the other medicines we are on.

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Lyme activated in April 2010 by gardasil vaccine.
DX: Lyme,Babs,Myco,Bart 11/10
Treatment Started: 3/28/11

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Tricia, I PM'd you.
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nefferdun
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I have heard that before - that everyone is testing positive, so maybe I won't get tested after all. I will just do the diet to the best of my ability. I don't think it is impossible to follow it but it sure is hard. I will get some lysine so I can keep the arginine in balance and do low sulfate, plant based food.

Following this, I do not enjoy what I eat. It is just to alleviate hunger. I can't think, this would taste good. Instead, I think, this is not going to hurt me.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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I've heard that the top ILADS LLMD's won't test or treat FL1953, so it looks like we're on our own here.

Sometimes I wonder if some of the best LLMD's have ego's too large to consider someone elses ideas.

It seems that Dr. F. is the only one testing and treating FL1953, I guess because he discovered it.

Am I wrong here? Are there LLMD's in the country besides Dr. F. who are treating this?

Looks like I'll be buying the horse paste.

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nefferdun
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I just called about the test. The lab attendant said they cannot give any statistics about how many people are testing positive because it would require a trial to give those kind of results. She also would not tell me the accuracy of the tests; basically same reason.

I left a message with Dr. F's receptionist inquiring about getting an appointment, the cost, time to get in, and if he is familiar with the methylation pathway mutations.

There is a lot of evidence that a low fat vegan diet is very good for diseases - everything from diabetes to cancer. I believe it. Maybe the other LLMD's that are popawing it do not want to admit Dr. F is on to something because of their denial. Most of them recommend something like the paleo diet which has a lot of meat.

I would rather not go to a doctor that tells me red meat is good for me. When you read about the CBS methylation mutation, there is science behind why animal products of any kind are bad for people who have it. Medicine is no longer one size fits all.

In the past, whenever treatment began to fail, it was because another infection I did not even know I had, was coming to the surface and the drugs were ineffective for it.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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Anyone know if Dr. M in CT is doing anything with FL1953?
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hadlyme
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My understanding is that alot of other LLMD's across the country are believing and treating for the FL1953. Many dr.s are sending labs into this lab.

I know that from our az lyme support group, that not all are coming back positive for this, so no, not everyone is testing positive. Becareful in what one reads or hears and passes on with information.

There is a famous East coast llmd that wants to call lyme "Multiple Chronic Infectious Diseases". They are all getting away from saying this is lyme completely. Again, there are many many protozoan's infecting us. Would make sense in how we all react to drugs differently, how some of us get better on some protocols and others don't. One size doesn't fit all with treatment and with disease. We have to start thinking out of the box with saying 'lyme'. It's vector borne disease's that we're dealing with. Just my two cents.

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Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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hadlyme
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Nefferdun... there are over 40 patients going to Dr. F from NW Montana, from one area.

I got this from living in MT also... in the NE corner growing up. (I currently moved back to MT too, but will still fly to AZ to Dr.F) Check out Allegiant Air out of Missoula as it flies directly into Mesa/Phoenix.... if you decide to go.

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Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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HadLyme, that famous doctor on the East Coast is not testing or treating FL1953. He's not on board with it. Which leaves me between a rock and the Tractor Supply Company.
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hadlyme
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[Smile] I was first treated by east coast dr. back in 1999-2001. My opinion for my body is that I wouldn't ever go back to his treatment. I'm much better with newer treatment.

But,as we know...everything changes, our bodies, how we fight this... etc.

Yea... decisions for our own bodies has to be a whole picture and what's best for each of us.. body and mind.

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Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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kelmo
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To answer someone's question about feeling better with a low fat diet. First of all, it is not necessary to go vegan. My daughter made the choice because she found she felt better getting off of dairy.

As I look back on her life, she was never a fan of meat and dairy. She rarely drank milk as a baby, preferring dry cereal.

Second, it's amazing all the things we eat that give us protein. A real good book to read is by Alicia Silverstone..The Kind Diet.

The one thing my daughter has to watch is iron and B-12. She supplements every once in a while.

I am flirting with the diet. I am finding that I am eating less meat and feeling better.

My daughter used to call it the "food hangover".

As for the FL1953, we have watched firsthand as Dr. Fry as searched for this organism. My daughter has been a guinea pig for him. In treatment since January 2006. She was bedridden for two years.

This morning, when my daughter wakes up to have her oatmeal with dried cranberries and blueberries, and she says "I'm feeling okay this morning and proceeds to spend 30 minutes on a minitrampoline, you know something good is happening.

Now, she may crash this afternoon, but for a few hours, she felt normal.

By the way...my daughter has never had a positive Lyme test.

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unsure445
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The Fry test cannot be ordered my any doctor in the state of New York.

Just an FYI for anyone with a llmd in New York.

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unsure445

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Yeah, but if your GP is not in NY, they can order it instead of the LLMD. I did that with my stool pathogen test.
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nefferdun
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hadlyme, that is amazing that 40 people from MT are going to see him. I am also encouraged to hear not everyone tests positive - that would make getting the test pointless. I just told my husband what you said and he said Allegiant flies there "very cheap". My gosh, is that a good sign or what?!

kelmo, I am happy your daughter is doing so well. I am also relieved that it is ok to have oatmeal for breakfast. Someone mentioned low arginine is important, and oatmeal was listed as kind of high on one site. Does your daughter eat nuts and seeds? I love them and they are very high in arginine (not to mention fat). I wonder if you just eat a small amount if it is ok.

Does Dr. F recommend a recipe book?

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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I wish there was someone on the east coast testing and treating this. None that I know of though.
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hadlyme
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McDougal Diet is what he talks about. It's a whole food, low fat diet. No meat.

10-15 grams of fat a day.

I do eat a bit of grass fed, lean beef. He doesn't have a problem with it, but basically it's the McDOugal Diet that he will recommend.

There has been some llmds on the east coast sending labs into F labs. Do a search in here and maybe see where the posters live and get their info on who they saw to send it in.

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Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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kelmo
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My daughter has a handful of nuts every once in a while. It really is okay. Your brain needs good fats in order to function. It's not a "no fat" diet.

Given a choice of milks, my daughter has opted for almond milk when she needs it. Soy has too much estrogen and we tend to be estrogen dominant due to the stress of the illness.

And..my daughter did crash later in the evening. That's been pretty typical lately. She just increased her ivermectin dose another 1/4 pill, so it hits.

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Can I ask why skim milk isn't allowed on the diet?

I've been on other low fat diets, many years ago, and skim milk was allowed.

With watching carbs because of candida, there's not much to eat. I know the diet calls for starchy vegetables, but they are contraindicated when taking a lot of ABX.

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kelmo
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Who said skim milk is not allowed?

My daughter has made a decision to be vegan; it is not a doctor's order.

I'm sure you can have skim milk.

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kelmo
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Oh, and I agree with the carb issue. She really watches her sugar intake (including fruit), and carbs.

She tips into yeast issues very quickly.

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Skim milk would help me tolerate the protocol. I had read the McDougal diet allows no milk.
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Deb133
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My daughter is being treated by a top LLMD on the east coast for Fry Bug. She tested positive. He said not everyone is coming back positive.

He did not want her on this so called 15 grams of fat per day diet or whatever that is but just a healthy diet.

She is doing very very well right now.

Debg

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17hens
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quote:
Originally posted by hadlyme:
McDougal Diet is what he talks about. It's a whole food, low fat diet. No meat. 10-15 grams of fat a day.

Is this the diet you're talking about? http://www.drmcdougall.com/about.html

I'm looking online and don't see the diet details. Does one have to buy a book to find it or is the diet detailed somewhere online?

Just want to get this right for my notes.

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"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

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Porsche
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Kelmo: This bug lives inside the red blood cells just like Babesia right? Isn't that where it divides and multiplies?
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17hens
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I found it - http://www.drmcdougall.com/free_4b.html


Neff, you always seem to start these amazing threads...how do you do it...? [Big Grin]

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"My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26

bit 4/09, diagnosed 1/10

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nefferdun
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Thank you for that site 17hens. It is really helpful.

I am doing the diet. I actually cheat a little bit to tell you the truth. I had half a cup of plain organic yogurt today but I took the cheese of my subway veggie sandwich and gave it to the dog.

I got a call by from the Dr. F clinic. His receptionist said he is not that familiar with the MTHFR mutation but he knows a little bit about it. I am leaning towards making an appointment with him.
The test results for the mutations doesn't come back for 3 months. This is not incompatible, as the CBS mutation also requires a vegan diet.

I got heparin today! I am very happy about that. I get 3 shots a day for 10 days. The GP was rattling off stuff today that was way over my head. Makes me aware of just how much I don't know but thank goodness he agreed, and now I can see if this helps.

I have had one shot and I think I feel better already! Even if I don't feel better, it is nice to think I might feel better. . . a ray of sunshine; a possibility. He said he will do phlebotomy after awhile when I see how this goes.
I am doing the get the medication you want celebration dance.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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dal123
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How much is an appt with dr fry and how long is the wait?
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hadlyme
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There's not that long of a wait to see him. I always get in within a week of calling. I've been going to him for over three years though. He takes insurance co pays if you have insurance. If not I think he's around 125 maybe. Don't quote me though. Calling his office can give you more info. Airpark medical Scottsdale.

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Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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BoxerMom
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quote:
Originally posted by nefferdun:
I am doing the get the medication you want celebration dance.

Me too!! I got my Ivermectin script. Can't wait to see how this goes.

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 - Must...find...BRAIN!!!

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nefferdun
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I was surprised at how cheap he is compared to other doctors. I can't remember exactly what the receptionist said but something like $250 to 275. Tests can be $500 to $2000. There are cheap air fares to Phoenix-Messa and Scotsdale is only 30 miles away. Too bad it is not mid winter!

The GP said the aching in my lower legs is caused from the hypercoagulation. He diagnosed me with phlebitis to cover the heparin. He said my legs should feel better in 3 days. The shots burn a little afterwards. There is a nasal spray and lozenges you can use but the GP has never heard of them. The pharmacist is looking into for me.

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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Elaine G
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Nefferdun, my husband and I just tested for FL1953.

None detected in my sample.

My husband did have a "detected" in his sample.

My point is, not everyone tests positive for FL1953.

Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
kelmo
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I am venturing a guess that if your western blot only shows positive for band 41, you probably have the FL1953.
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Elaine G
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Kelmo, my husband had a lot more bands on the WB besides 41. He is positive. He also had Lyme specific bands.
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hadlyme
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That's interesting kelmo. I had only band 41 years ago. Makes sense now. Never did think I had lyme but knew I had something. Was an answer to prayer when.finding FL1953.

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Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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kelmo
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Elaine..my daughter had 30 and 41 show up positive. I was just saying that if you have 41 show up then you probably have the FL1953. Most ONLY have the 41 show up.

Like me.

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nefferdun
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I made an appointment with F yesterday. The air fair with taxes and seat reservation (it all adds up) came to about $300 but the hotel reservation for two nights was also $300. Then the cab will be $55 each way - so it is expensive. I hope he does not require frequent visits. I forgot to ask.

I will have to dig up my tests and look at which bands were positive. I know I had more than one band. Now I am really curious and have to go find those tests.

Found them and I am positive for 41.

[ 03-23-2012, 12:28 PM: Message edited by: nefferdun ]

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old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
kelmo
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He will give you the time. It will be worth it. Just tell him how far you traveled.
Write a list of questions and don't leave until they are all answered. He takes a lot of insurance, or gives a cash discount.

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hadlyme
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I agree with kelmo. Make sure he knows your from Montana too. I just move back to Montana but will still fly down to him. Next time if there is another time you fly Allegiant don't pay for your seat. You'll get a great seat and not spend the money for it. I'm been flying with them for over 4 years. Wish I still lived there and I would help you with transpotation from mesa.

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Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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Elaine G
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Kelmo, I had band 41 ** show up with other lyme specific bands and I am negative

My husband also had 41 and other lyme bands show up and he is positive.

Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
   

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