I am sorry I put an s on the end of Lyme, apparently you all feel strongly about how it is spelled.
I am not a doctor, but got Lyme, and simply wanted to post some positive news where there was very little.
In no way did I try to belittle anyone with my story. However, nearly every one of you did it to me, which makes me judge this community very strongly.
Either way, I want you to know I am not a doctor like some of you more paranoid ones are proposing, and am as sincere as it gets. I hope you all get better, truly, and I agree with what one of you said - that it is a different path for each of us. I acknowledge that, and it is entirely possible the sneaky ***** are hiding in my cells. We will have to see.
[ 09-12-2013, 04:33 PM: Message edited by: Lymetoo ]
Posted by lax mom (Member # 38743) on :
(editing out previous comment)
You said: "So I posted this story because I realized the confusion I got from researching Lymes when I had it, and I want this story to be there for anyone who just got it and are wondering if antibiotics can get rid of it.
Yes it can. When I asked my doctor about whether the Lymes can survive the antibiotics, he asked me, "Have you been reading on the internet?" ha!
I know some of you probably hate hearing that sort of thing, but people who just got Lymes should not worry about any of that."
I would like MY personal experience to be out there...
2 years ago, my ID Dr diagnosed me with Ehrlichia, a co-infection. I got 2 weeks of Doxy. After that, I had THE ABSOLUTE BEST 2 MONTHS OF MY ENTIRE LIFE.
2 months later, the low grade fevers started to return and then my symptoms snowballed...AND I HAVE HAD THE ABSOLUTE WORST 2 YEARS OF MY ENTIRE LIFE.
[ 09-12-2013, 08:09 AM: Message edited by: lax mom ]
Posted by Keebler (Member # 12673) on :
- This is not about a typographical or misspelling. My concern is that if you had a doctor who consistently used the term "lymes" with an "s" you did not have a true lyme literate doctor and it's important to know that is a red flag signaling they have done no research about lyme.
Still, as you say you are better, that's great. just know that some of the misconceptions stated are not facts and can be of great harm to someone with lyme who accepts the misconceptions.
Some wonder if your post is on the level. I don't have the time or energy to try to figure that out. I usually spend effort trying to help - just in case - even if I might wonder.
I have to assume you would never come here to harm others by posting false "misinformation" and would want to know if such statements are false (which many are but it seems that's what you've been told and just did not yet have the information to show otherwise).
As you report getting better relatively easily, know that you are extremely fortunate and this is very rare for late diagnosed but sometimes can happen when treated right away.
Still, as you report being treated with ONLY doxycycline, it's vital that you have information about how that can suppress spirochette for a time, pushing them into cyst form and later, chronic lyme can blossom and clobber.
This is not intended to diminish feelings of success and feeling well, just to give you information that could save your life. Please refer back to that detail. You may get lucky, or not. Still, for anyone else you talk to about lyme, it's essential to understand the complexities and how it's not always so simple.
As you report feeling well, I hope you are lucky and continue good health practices. And, if things change, knowledge is power. Find a doctor who knows enough to never treat with just a single antibiotic.
The book, Cure Unknown (P. Weintraub), will explain why I say all this and that you may be okay, depending upon which strain of Bb might have been involved. For many, it's a very different experience.
I hope, whatever your circumstance, that you never have to be faced with chronic lyme or other chronic tick-borne disease. But if you are, find a real LLMD so you have a chance. -
Posted by Lymetoo (Member # 743) on :
following
Posted by beaches (Member # 38251) on :
LAX, I liked your first, very spot-on response much better.
Phosporose, you said "In no way did I try to belittle anyone with my story. However, nearly every one of you did it to me, which makes me judge this community very strongly."
You poor thing. Must be tough being a faux victim.
Good to know you're not a doc "like some of you more paranoid ones are proposing, and am as sincere as it gets."
Oh sure you are! Do we have STUPID tattoed on our foreheads???
ROFLMAO2
Hey, I heard there's a bridge for sale in Brooklyn! I can look up the details if you're interested!
Posted by lax mom (Member # 38743) on :
Funny beaches! Glad you caught the original post. Posted by lax mom (Member # 38743) on :
I have a great idea Phosphorose.
You should put your story on Youtube.
There are LOTS and LOTS of videos of young people struggling through chronic lyme on there.
Since you simply wanted to post some positive news where there was very little...youtube would be a great place for you to let your voice be heard among thousands of videos of suffering Lyme victims.
Posted by OptiMisTick (Member # 399) on :
[ 09-20-2013, 02:04 AM: Message edited by: OptiMisTick ]
Posted by beaches (Member # 38251) on :
Lax, what an excellent idea!
Phosphorose, you should definitely put your story on Youtube!
I'm sure the positive news about your experience with Lyme Disease and your advice to those who actually have Chronic Lyme Disease would very much be appreciated.
Thanks in advance for your expert advice and good counsel!
Posted by Eight Legs Bad (Member # 13680) on :
Phosphorose, you wrote in your first post:
"intense fear and confusion would overcome me at random times during the day along with cold sweats, facial flushing and a really strange heart beat.
I also lost some feeling in my face and extremities and had heat shoot down to my right foot."
Then you tell us that the doctor you saw diagnosed a "cold".
Then you say you feel he is a great doctor.
Well, I would say that was not a "great" doctor you saw, but a doctor who needs to be struck off. I think most people would agree with me - whatever their views on Lyme and their knowledge of medicine.
then you said:
"I saw a great doctor by the name of Dr. Z in Fl**. He didn't want to believe I had Lymes from Florida, but he said he couldn't argue with the blood test and put my on 4 weeks of Doxy!"
You think a "great doctor" is someone who believes there is no Lyme disease in Florida? He sounds like a great big moron to me.
You have been around the Lyme forums long enough to "know" that people "don't like to hear success stories" (what nonsense, people are desperate to hear success stories, but people are not interested in fairy tales)....well then, you have been around long enough to know that there is Lyme disease in Florida - plenty of it.
And if you don't know it, please go do some reading, before you attempt to "advise" 41 000 people who know far more than you.
Elena
Phosphorose Junior Member Member # 41946
Icon 1 posted 05 September, 2013 11:57 AM Profile for Phosphorose Send New Private Message Edit/Delete Post Hello everyone. I am going around to different forums sharing my story of my success to add to the void which is the positive stories of people overcoming lymes.
Remember that the people on the forums and the people sharing their experiences are mostly the ones that had complications and did not get well, and the ones that got better forgot about it and did not share anything online.
So if you just got Lymes know that many or most people actually get over it quickly with some antibiotics.
I have gotten it, and have two friends that had it from tick bites in our yard in Florida. One had the bulls eye and got some knee damage, but he is doing fine now after being treated.
My other friend had heart palpitations and felt like he was dying, got treated and got better, then got it AGAIN from another tick bit, got treated and improved yet again.
My story is a little different. My friends did not get tested, but I did. I went months not knowing what it was because my tick bite did not have the bulls eye,
it was just really itchy for two weeks straight. I thought it was strange how itchy it was but didn't think much of it at first.
Then I started getting a strange heat sensation down my right arm, which I intuitively knew meant infection but thought it would go away. HA!
The worst symptoms began out of no where. One day I felt like I was losing it, which I know now is part of the neurological symptoms from Lymes.
An intense fear and confusion would overcome me at random times during the day along with cold sweats, facial flushing and a really strange heart beat.
I also lost some feeling in my face and extremities and had heat shoot down to my right foot.
Remember this is a success story! I'm getting to it!
Finally went to the doc after I couldn't take it anymore. I should have gone days before but I guess I was afraid of what the outcome would be and didn't want to deal with it!
However, this urgent care doc thought I just had a cold that was going around. He assured me a kid came in earlier with similar symptoms. (I hope that kid is ok!)
He told me to come back after the weekend if I was still sick. I knew deep down that what I had was something different.
I even told him that, and told him that I thought it was strange I didn't have a fever but felt this way.
Note: He is a great doctor, and it wasn't his fault. He said he would get me a blood test in a few days if I wasn't better.
In the next month I didn't go back to that doc because I went on vacation with my family.
Every day I kept having the strange panic attacks but I thought it must be because I had literally just lost my job.
The restaurant closed one day without any warning. I was low on money and wondering what was next. Basically excuses.
Every day I would get more heat shooting down to my right leg, and then began even worst sensations upon arriving from vacation.
I began waking up in the middle of the night and feeling like there were bugs all over my skins, which were from random nerves firing throughout my body.
All the muscles in my body would also take turns twitching. When I touched something cold it hurt, and when I touched something warm it burned!
I would go into this mode of extreme morbid fear where I thought everyone was suffering inside nad the whole world was a manifestation of fear.
I know this sounds exaggerated but it is the only way I can describe the negative emotions it was causing in me.
I was extremely tired, worn out and worried at this point.
I went down to my parents place initially to work with my brother on some business projects but I ended up mostly recovering down there.
So I finally broke down and told my parents what was going on and went to a local urgent care doctor. I told her I wanted a Lymes blood test because I knew two friends who had it.
She didn't think I had it, but she was surprised when I blood tests came back positive.
She sent me to the infection disease center and I saw a great doctor by the name of Dr. Z in Fl**. He didn't want to believe I had Lymes from Florida, but he said he couldn't argue with the blood test and put my on 4 weeks of Doxy!
I was utterly relieved to be finally treated for this thing which had been my bane for months. He also wanted to confirm I had Lymes so had 3 more blood tests ordered.
They came back positive for acute Lymes, which is strange since I had it for a while, but he said it was possible if my immune system was behind.
On Doxy my symptoms slowly got better over the course of that month. I was afraid it wouldn't get better after reading about all the horror stories on the internet but surely enough symptoms began to fall away.
I was happiest when I wasn't having the panic attacks since that sort of emotional thing was so foreign to me.
I forgot to mention I had pain in all my joins as well, which was one of the first to leave. Then the twitching left, the extreme nausea left(also forgot to include that one) and I regained my appetite!
Then I began feeling hot and cold normally again. It felt like I was re-anchoring back into my body.
Everything was pretty much better when I finished my last pill of Doxy.
Funny thing is I dropped one down the sink and I was so worried that one pill would be the one that would prevent me from getting better! Ha.
I went back to the doc after 4 weeks and I told him that I was much better and so thankful he put me on antibiotics right away.
I told him I still had some days that I was tired and kind of off. He told me that happens to him too. haha.
I was still somewhat on the edge about whether I was cured but now a month after seeing him I no longer get abnormally tired and feel completely back to normal.
Well, I have a cold right now as I type, but it doesn't bother me. I can't imagine how a cold or flu, or little nuisances of daily life could ever bother me after going through the Lymes infection.
So I posted this story because I realized the confusion I got from researching Lymes when I had it, and I want this story to be there for anyone who just got it and are wondering if antibiotics can get rid of it.
Yes it can. When I asked my doctor about whether the Lymes can survive the antibiotics, he asked me, "Have you been reading on the internet?" ha!
I know some of you probably hate hearing that sort of thing, but people who just got Lymes should not worry about any of that.
I am sharing my experience because I had nearly every symptom possible and to a scary extreme and had great success with 4 weeks of Doxy!
I hope this is a light at the end of the tunnel for you.
One other thing I would like to mention is that Burdock root extract helped me clear up the remaining symptoms the month after getting off Doxy. It is a blood purifier.
It is also possible that I would have gotten over it anyways, but it is worth mentioning.
I also practice chi kung and meditation every day. Chi kung has some amazing healing effects.
Meditation helped me clear up any left over emotional effects from the panic attacks induced by the Lyme which was basically just my body telling me it was freaking out.
I would always recommend sitting meditation and a moving meditation such as chi kung or tai chi to anyone, ever, in any situation. [Wink]
That is my story, sorry for the length. God bless. I hope you all recover and find health, strength and peace.
I am sorry I put an s on the end of Lyme, apparently you all feel strongly about how it is spelled.
I am not a doctor, but got Lyme, and simply wanted to post some positive news where there was very little.
In no way did I try to belittle anyone with my story. However, nearly every one of you did it to me, which makes me judge this community very strongly.
Either way, I want you to know I am not a doctor like some of you more paranoid ones are proposing, and am as sincere as it gets. I hope you all get better, truly, and I agree with what one of you said - that it is a different path for each of us. I acknowledge that, and it is entirely possible the sneaky ***** are hiding in my cells. We will have to see.
Posted by beaches (Member # 38251) on :
Good job, Elena.
Phosphorose, care to respond? It's been 3 days since you posted...
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