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» LymeNet Flash » Questions and Discussion » Medical Questions » Feeling down... Can anyone share their success stories?

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Author Topic: Feeling down... Can anyone share their success stories?
alexkfiore
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I'm still waiting on my test it's done but I can't see it until Monday apparently they're going to email me . My doctors appointment is on Tuesday to go over the results. I've started on Doxy and I've just felt so horrible this past week even before I started on It. past few days it's taking everything in me not to run to the ER every night. I had dreams that I was going to die & dreams that I was trying to get to the hospital! [Frown]

I have been to the hospital 7 times in the past 2 months there is no way I can bare to have another uncomfortable IV in my arm and sent home with no answers. It's getting worse and though. Longest week of my life waiting for these test results!!!

Posts: 32 | From Orange County, CA | Registered: Jul 2017  |  IP: Logged | Report this post to a Moderator
TF
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I love to share my success story. I had undiagnosed lyme disease for at least 10 years. I went from doctor to doctor for 10 LONG years with nobody able to figure out what was wrong with me, so they offered me antidepressants.

All my routine blood tests were all normal. I got yelled at by doctors that I was NOT sick! And on and on until finally I went to a very smart endocrinologist who thought it sounded like lyme disease.

Bingo! My test was positive. Then, I had to learn that only a lyme specialist would help me enough to get well. Then, I went through the lyme doctor learning curve.

Eventually, I went to hear Dr. Burrascano speak and I knew right away that this guy knew a whole lot more than the doctor I was currently seeing.

I saw that my lyme treatment was indeed pathetic. I wasted 2 years with this guy, recommended by a lyme support group leader.

So, then I called another support group and asked for a doctor who did everything that Burrascano says you must do. I went to a Burrascano type doc and found out I also had babesiosis and bartonella (tested through Igenex).

He told me that I must have a very strong constitution to have these 3 diseases this long and still be working. (I did it through sheer will power and because I had a desk job and could take lots of time off.)

In 8 months, this doc had me symptom free. I treated for 13 months and then was finished. That was over 12 years ago.

Then, I sent at least 5 of my friends to Burrascano type doctors and they also got rid of their lyme.

This is why I believe in the Burrascano protocol. I have seen it work over and over.

This is my advice to all lyme patients: Go to the absolute best lyme doctor you can possibly afford. That gives you the best chance of getting rid of this horrendous disease. Be willing to travel and be willing to pay for expertise.

You have to inquire an awful lot about lyme doctors to find who is really good and who is consistently getting folks well. That is the lyme doctor learning curve that I mentioned above.


Also, don't put all your hopes in these Igenex test results. You could be disappointed. Even though you have these diseases, your tests could still come back negative. That is why a good lyme specialist treats the patient based on symptoms, not based on test results, just as stated in the Burrascano Guidelines. None of these tests are 100% accurate. They just aren't reliable.

My smart lyme doc did at least 2 different tests for babesiosis and at least 2 different tests for bartonella when he sent my blood to Igenex.

I hope your doc was smart enough to do the same.

I was positive on one test and negative on another. But, if you are positive on ANY test, you know you have that coinfection.

And, if you have any coinfection, you nearly always also have lyme.

So, if you get any positives, you most likely have lyme, babs, and bart.

And, I am not talking about a CDC positive. No. I am talking about 1 or 2 lyme specific bands being positive on Western Blot. That's all you need. Read it in Burrascano, p.7.

I hope you know that the CDC criteria are just for their surveillance purposes. These criteria are NOT meant to tell a doctor when to diagnose lyme disease.

So, I got well, my 5 friends got well, and my lyme doctor who cured me is also a success story. That's 7 people right there that I know personally, not through the Internet.

When you get your test results on Monday, you can post them on here and we can all tell you what we think of them. Many of us know how to interpret these tests.

Again, just know that the test results are not reliable if they are negative, and they are also not that important in the big picture. So, don't put your hopes on these tests. Rather, put them on a great doctor with at least 10 years of successfully treating this disease full-time.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
alexkfiore
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The doctor have now I was alright she already thinks I have Lyme disease she's convinced. She had a checklist of symptoms and I had all of them except one (fever) even though I always feel hot I always check my temp when this happens and sometimes it's even low.

Strange. I have a coworker who is friends with a girl that lives in my area (Orange County) who flew to San Francisco to see a doc. She is better 6 months in! She thinks I have it too

it's hard to explain to my parents that I want to make an appointment with an expensive Doctor Who takes half the amount of the appointment as a down payment and buy a plane ticket without results

they keep convincing me to keep waiting but the more I'm waiting the more sick I'm getting! It's just money and I have money saved but it's a big ordeal to them to do all of that with out a test result.

[ 07-29-2017, 02:58 PM: Message edited by: alexkfiore ]

Posts: 32 | From Orange County, CA | Registered: Jul 2017  |  IP: Logged | Report this post to a Moderator
TF
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Alex, I suggest you educate your parents about this disease a little. Have them read page 7 of the Burrascano Guidelines.

Ask them to read this thread.

Just little things.

Also, you don't need to quote a post in total. That just takes up a lot of space and puts the entire thing in bold. Just quote a sentence if you really want to.

Also, lyme keeps people from being able to read large paragraphs. See how short mine are?

See how long yours is above--7 solid lines. People on here can't read that.

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Bartenderbonnie
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So very sorry to hear of your unbearable sufferring. . .

I read this 3 years ago and it made me cry because it explains how family members just don't understand, through no fault of their own. Thought it might help.

http://julieslymediseasefight.blogspot.com/2010/11/letter-from-lyme-dad.html

Regardless, you have to grab the bull by the horn and fight for your health ! Your life depends on it. Hang in there friend !

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alexkfiore
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Thank you, it is a difficult decision to make I have lost my faith in the medical field, so I cant help but constantly second guess myself.

Like what if its something else? Everything seems to match up perfectly to most others stories,

but some sort of proof would make this much easier and give me piece of mind

This is the most confusing disease!

Posts: 32 | From Orange County, CA | Registered: Jul 2017  |  IP: Logged | Report this post to a Moderator
hopingandpraying
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Alex - here is a link from Lymenet full of "Progress & Success Stories" for you to read:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=015820;p=0

Educate your parents by having them view "Under Our Skin" for free on http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8

Try to find a local Lyme support group near you and go there with your parents if you can.

Just take one day at a time. This is a complex & difficult disease.

For uplifting, encouraging, life-changing music, listen to KLOVE (FM radio). You can listen anytime online www.klove.com or on this local FM station in your area:

102.1 FM (San Diego)

God bless. Prayers to/for you on your healing journey.

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Bartenderbonnie
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Alexkfiorre,

The only thing confusing is how we are left to rot by the mainstream medical community. Certainly, if our concerns were addressed earlier, we wouldn't be in the Lyme maze we now find ourselves in.

Your frustration is universal !

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bluelyme
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When i started doing bvt in front of my fam they got the picture pretty quik...its very inexpensive and effective ..watch under our skin .the scene with mandy may change their perspective

--------------------
Blue

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alexkfiore
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thank you everyone! if anyone else would like to share their success stories it would be greatly appreciated!

I'm not having a very great day

Posts: 32 | From Orange County, CA | Registered: Jul 2017  |  IP: Logged | Report this post to a Moderator
   

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