posted
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.
That is my story, sorry for the length. God bless. I hope you all recover and find health, strength and peace.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
sorry, it's "lyme" not "lymes".
and no infectious doctor has ever helped me or anyone i know with lyme, and that's the god's truth.
we all have to find our own path whether it be abx or natural.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm glad you are better. However, there is some confusion in the repeated use of the word "lymes" as there is no "s"
If you researched "lymes" you may not have found information for treating LYME.
Burdock root is a very nice supplement for support. And Chi Gong is very helpful, too.
Positive Lyme Tests, FOUR WEEKS ON JUST DOXY. Sounds like you have been off of doxycycline for TWO MONTHS now.
In your case, you may be lucky and this will be a long lasting remission.
Just be aware that, if that changes ANYTIME in the future, you should seek out advice of a LYME literate doctor. Doxy can cause lyme to go into the cyst form and hide. It can seem like it's gone but it's really just hiding.
Later, it could "break out" of that cyst form so to speak. There are some who have done okay with a short courses of a single drug but many who have not and require combination treatment, rotated over months, or longer. Just be aware.
Most infectious disease doctors like the one you saw for "lymes" are not fully educated about lyme. Still, maybe you got lucky and had one of the "easier" strains. Hope so.
Best of luck to you and hope for continued improvement. -
[ 09-05-2013, 02:19 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As you are feeling good now, best wishes for that to continue. It sure could. However, this is very important detail to know - just in case you need this later on - you may want to save to your "research" file.
And be sure to get a hard (paper) copies of those positive lyme tests, just in case you ever need them. Put a note with those in your file for the dose amount and strength of the doxycyline and dates. This detail will be of help if you ever need to explore further.
How just doxycycline (or any other antibiotic, alone) can cause chronic lyme:
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
[ 09-05-2013, 01:33 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
I believe it. My niece went a some months without treating and 2 months of doxy did the job. All about how bad the infections have tied up your immune system.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I assume you'll continue with Qi Gong. It's so excellent in many ways.
And for herbal supplements, you might see if there just happens to be a LL ND (naturopathic doctor) near you to field any questions about any needs you may have - and suggest ways to stay strong.
Be sure to avoid steroids.
Do not donate blood.
Please rescind any organ donation on your driver's license.
There is currently no test that can prove it's gone. Sorry. If someone who is very ill receives any tissue from you they could contract lyme. In the future, testing may improve but it's just to dangerous to risk others' lives now without 100% proof they could not obtain lyme from blood or tissue donation.
Best to avoid alcohol until you are at least 6 months in a strong remission, maybe a full year as lyme can cause damage to the liver that can take a full year after remission to heal enough to be exposed to alcohol.
If you are of childbearing age (whether woman or man) be advised that lyme and other TBD can be transmitted to baby. Counsel before conception with a LLMD if you or partner have any symptoms.
It seems to me that you are likely making good choices with nutritious foods, too. Always good to continue that.
Walk in strength and do enjoy good health, of course, yet be mindful if there are any clues that you need to seek immediate counsel from an ILADS educated Lyme Literate doctor. -
[ 09-05-2013, 05:50 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
my son was able to get back to work and thinks hes cured with 2 months doxy but i see residual stuff and just pray he will be able to handle it
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
I'm glad you were able to clear this up quickly in your case. You are indeed a success story for an informed person who pushed for meds right away. (you rightfully should thank the warriors who push to get info out so you knew what to do when it happpened.)
Please understand, we are happy for you. But many of us were not informed, b/c we were the front line victims of this disease, when docs told us it was nothing, not to worry, women of this age have similar symptoms, to lose weight or exercise AS WE WERE FAILING and losing our lives.
Think if you kept these original symptoms happening for years and years on end. Plus it morphing from one organ to another, to bones, to brain, unbelievable pain and loss of cognitive thinking abilities. And w/no one to turn to, though you sought help f/specialist after specialist. Docs who charged $ and did nothing. That is the majority of our groups history/experience.
20 years later...no amount of abx can cure the damage this horrid pox has caused us, in terms of money, careers, marriages, friendships, lives, doctors and HEALTH issues that have quadrupled 10 fold being untreated.
That being said.....I'm happy you feel well and that you sought early treatment. I wish you well! And I love and miss having that youthful exuberance of an "ah-ha" moment in time to catching it early. We all wish we were that lucky.
Good luck and I hope all good things for you. I love to hear any success story as it gives hope to others. Posts: 867 | From PA | Registered: Jan 2006
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
My husband did the 30 days of Doxy at 400mg/day (huge dose) right after his exposure. He went into remission.
He relapsed 18 months later and nobody knew what is was. He'd treated for Lyme. What could this be?
He was tested for cancers, autoimmunity, etc. He was told he was depressed.
Fast forward eight years. I get diagnosed with Lyme and co-infections. He goes to get tested and gets the worst blood smear our doc has ever seen. He is LOADED with Lyme and co-infections.
Our doc still uses his blood smear as the "gold standard" to show her patients.
He has now been back in treatment for five years and is still treating.
Very happy for your successful treatment. But it's irresponsible to tell people they are cured and not to worry.
I prefer to tell people to be happy, live your lives, and be vigilant for returning symptoms or re-infection.
posted
Please be sure to read the above posts!!! Remain vigilant in case your "cure" does not hold up.
Don't let them diagnose you with fibromyalgia, MS, ALS, Post Lyme Syndrome, etc.
If you become ill again, find an LLMD right away.
Best wishes for a full recovery!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
So did your infectious disease doc test you for co-infections as well? Happy for you but many of us went on Doxy right away without getting the same results as you. You are one of the lucky ones.
I assume your doc put you on a cyst buster while on Doxy? Best of luck to you.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I hate to burst your bubble, but lyme is just not that simple. I hope you cleared it, but you may have knocked it into remission. IMO, once you get it, you have it. It can lay dormant for 10 or 15 years. Stress brings it out.
I know people who got the bullseye, got 8 weeks of doxy, and it came back a year later. This bug hides extremely well from antibiotics, even T cells. It is designed to evade, thrive, trigger and even mimic many diseases.
Best wishes, and happy to hear you treated early. :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
actually i do believe it is possible...not probable...that caught early with the right dose right med-right genes right environmental and medical history...maybe someone could get well. i hope you do.
but like boxer moms husband...my son...the one who wasnt dx as a child like the other 3 were and therefore wasnt treated...his testing was worse than anyone else in the family except one...and he is already telling me-at 40 -that he feels he is getting old and keeps forgetting things....and he has know belief it could be lyme and in fact thinks he never even had lyme...otherwise how could a little bit of abx like that make him better when i have been sick for so long...again...he doesnt get it-he and the others spend so much time denying lyme ...they dont understand the sx...they believe the docs saying its normal aging...
i need to survive my next surgery and if i make it thru figure out how to live differently...this world is crazy...with docs and science the way it is
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
You said:
"So if you just got Lymes know that many or most people actually get over it quickly with some antibiotics."
Not always true. A family member of ours got immediate, long-term antibiotic treatment and STILL had positive tissue biopsy for Lyme months later.
And by the way, from what source are you getting that information?
You said:
"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 find this comment both odd and insulting. Lymenet is a support group for sick people and/or those who are caregivers.
Many here have been fighting this battle for YEARS. Seems to me that most of us do our own independent research (ie, reading medical journals, speaking with knowledgeable medical professionsla) and have a wealth of knowledge just through our own personal experiences.
I'd like to ask YOUR doctor what exactly HE knows about Lyme Disease and where HE got his misinformation.
And since you're new to all this, how long have you been "reading on the internet?" Usually newbies who get well quickly do not end up on Lymenet.
You said:
"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."
Why would you make such a statement? It isn't about "hating" hearing "that sort of thing." It's really more about your extraordinary naivete, given the complexities of this disease.
Since you are apparently very new to this, I wonder why you would counsel anyone to not "worry about any of that." It seems rather odd to me.
You said:
"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!"
Doesn't sound like you had "nearly every symptom possible" -- not even close, actually.
If indeed you are "for real" I am happy that you are well after a month of doxycycline. You are one of the lucky ones if this is the case.
I would ask that going forward, you refrain from dispensing simplistic advice and roundabout insults to the forum members.
Posts: 1885 | From here | Registered: Jul 2012
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posted
troll?
Posts: 30 | From Winter Park Florida | Registered: Aug 2013
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Thank you, beaches. I spent part of my day mentally preparing my further response. Your post took care of it. Very well said.
Winter Park, totally. Docs and others often troll our board to tell us what idiots we are for thinking for ourselves, gathering information and seeking appropriate treatments for our complex, disabling disease presentations.
Trolls often give themselves away by their belittling, patronizing tones and irrational refusal to educate themselves. But they love to tell us what to do!
posted
Lp remind me not to make you mad Posts: 47 | From new england | Registered: Jul 2013
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
im a flower child...make love not war type...so it takes a lot to get me mad. but that did it.
ps-plus im having a bad day or 2 days...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Well said Beaches! Winter Park, I thought the same thing (felt like Phosphorose's mind was made up).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Phosphorose, if by some small chance you are not a troll, I hope you open your mind up and realize that you have chronic lyme. Once you have it, you have it. The doc you saw is clueless and closed minded. Unfortunately, physicians or anyone else who are not ILADS trained have been postured to dismiss anyone who thinks they have lyme. They think lyme patients want to have it and believe it's all in their head.
All of us on here have been through similar treatment by allopathic dos. They simply won't listen because the idsa guidelines are the ones they are required to follow. They actually don't know the idsa guidelines are old and out of date and flat out wrong. But we do, and there is no way to poke a hole in this group and convince anyone here otherwise (good luck).
We have all sought help from people who truly know how to treat chronic lyme (ILADS). They are light years ahead of everyone else, and this really ticks these allopathic docs off (ha ha). And if you are a troll, you're dismissed.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I could edit the "LYMES" .. but may leave it just so others will notice and open the thread.
Very annoying and most trolls know that.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Lol!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The dismissal of fatigue is also a dig. [Paraphrased] Patient: "still very tired some days." Doctor: "well, so am I!"
That response (and lack of exploration of the issue) is just wrong on so many levels.
And a huge DITTO to Catgirl's post (a few posts above). Very well stated. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Phosphorose, it's Lyme, not Lymes. It's named for Lyme, CT.
Second, it's not that simple to fix what is essentially a relapsing illness in which the bacteria can hide during treatment and re-emerge when conditions are better for them.
We're dealing with the most sophisticated bacteria on earth, and I suggest you do a little more study about it.
You know what? I don't believe you, and I don't think you're a real Lyme patient here.
You said you went months before you got the month of doxy. It don't work like that. It usually takes 6-8 weeks of doxy for an acute case. After months, your Lyme case would be disseminated Lyme and you can't fix that with a month of doxy.
I am posting this for others who are new here - it don't work like this poster is discussing. Treatment is a lot more involved.
Posts: 13117 | From San Francisco | Registered: May 2006
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