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» LymeNet Flash » Questions and Discussion » Medical Questions » I am back...lyme relapse after 3 years

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Author Topic: I am back...lyme relapse after 3 years
skarey
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Hello,
I am a former member here on Lymenet and some of you may remember me. I think my old username was kareamber or something similar.

Anyway, I was diagnosed with Lyme disease many years ago while living in England (military). After seeing a LLMD and Rheum in England I became better and was living a close to normal life.

Over the years since being treated, I have dealt with minor lyme related flare ups such as pain, dizziness, and brain fog. These flare ups would normally come and go and I just lived with them. But overall, I felt like a new person!

I decided to go back to school to become a nurse or NP! I want to help others that are in the same situation as us.

I am in my second year nursing and am experiencing a horrible flare up. This one doesn't seem to be letting up and I am very worried.

I currently only see a Rheum for my inflammation issues and take daily plaquenil which has really seemed to help me over the years.

I am so sad that after feeling so well for so long that I am starting to decline again. I think I need to find a local LLMD to help. Does anyone know of a LLMD in Colorado?
Thanks!

[ 09-08-2013, 03:07 AM: Message edited by: Robin123 ]

Posts: 16 | From CO | Registered: Sep 2013  |  IP: Logged | Report this post to a Moderator
GretaM
Frequent Contributor (1K+ posts)
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I am sorry you're having a relapse.

Lyme is terrible.

Best way to find a doc is to post in "Seeking"

Be sure to put Colorado in the header so folks from Co will reply to you.

Best wishes

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
Pocono Lyme
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Dizziness is often Babesia.
I hope you're able to get well again and soon.
Good luck to you.

I think I remember you.

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

Posts: 1445 | From Poconos, PA | Registered: Jul 2004  |  IP: Logged | Report this post to a Moderator
jmb
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ska, hi there. wish I had somethin to tell you. I am sick again too. I worked so hard to be well before. Over 2.5 years of treatment(which I know is not much compared to some on LymeNet) wrecked the marriage, the career and the retirement.

Now I just can't believe I have to do it again. I don't even know if I can. Just beat.

Good luck. I am pulling for us.

--------------------
enjoy the day.

-jmb

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Lymetoo
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Hi kareamber!! It is so wonderful that you are in nursing school! I do hope you can find help ASAP and be able to finish! We need you! [Smile]

jmb and kareamber.. Be sure you have a good Dr and get treated for coinfections. Relapses are often about something that went undertreated or not treated at all. Babesia is often the culprit.

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

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KH111
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Were you ever tested for babesia? Dizzyness, and brain fog were 2 of my symptoms and headaches in the back of my head was the worse one for me. It was babesia and only after treating babesia did we recover. We have been symptom free since 2004.
Posts: 160 | From somewhere | Registered: May 2010  |  IP: Logged | Report this post to a Moderator
ukcarry
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Very sorry, both of you. Look on the bright side: you have both recovered once, so you can do it again.
Good luck.

Posts: 1644 | From UK | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
lululymemom
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I think if we understand lyme is mostly a chronic illness that ebbs and flows its easier to accept the "relapses." Keep your immune system strong to stand the best chance of recovery.
Those who have been cured caught it early. This is my opinion as one who has lived with it for 13 years and never treated with abx.. but did help my daughter treat with abx.

--------------------
IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

Posts: 2026 | From British Columbia | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
CherylSue
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Hi Kareamber,

Your name is familiar. Sorry you relapsed. I have gotten better and relapsed several times, but finding an LLMD who really understood Lyme and treateed aggressively really helped me, and although I'm still treating with abx, I'm doing fairly well.

Stay the course.

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OtterJ
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We have the benefit of knowing what health is after lyme. It is depressing once you start to

feel those old symptoms. It is the ebb and flow of this disease and it is frustrating to have to

bow to this damn, little critter. However, we have tools to go after these things. I agree,

find a good doc in CO from those here in the know on the boards. You remember better times of a

care free existence. Hold onto those and don't be

hard on yourself. You aren't weak, just a little compromised now. Look into glutithione support

and Japanese Knotweed for inflammation. Keep asking us here those important lyme questions.

Posts: 474 | From Oregon | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
skarey
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Otter,
I just read about the Japanese Knotweed yesterday. I heard it is good for brain related issues from lyme. Have you tried it?

It is so frustrating to feel so good for so long and then completely out of the blue get sick again! I can't figure out what caused it except I had a sinus/chest infection a few weeks ago and was taking abx. Maybe the abx stirred up the disease again??

I just want my normalcy back so I can continue my college degree. I want nothing more than to help those that are in the same shoes as me.

Thanks you all who have left feedback. I appreciate it!

Posts: 16 | From CO | Registered: Sep 2013  |  IP: Logged | Report this post to a Moderator
Phoiph
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Skarey...

Maybe it is time to consider a new direction?

Here are two threads where I have posted about how I became well through mild hyperbaric (after 8 years in hell with no hope of recovery)...

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/125201

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/120484

I try to pass on the information as much as possible, as it is not something many people have seriously considered, and it truly gave me my life back, no medications, no restrictions...

You can PM me for more information if you like...

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steve1906
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You should get tested right away. It is quit possible you got bit again, and this may not be a relapse!!!

It happened to me and many others, so you don’t know for sure if it’s new infection.

Keep us updated.

--------------------
Everything I say is just my opinion!

Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
OtterJ
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skarey, if you were fighting an infection, those sneakky lyme crtters could have found an opening in

the body's defense system, and re-manifested. I have not used knotweed, yet. I am searching for

just the Japanese Knotweed Resveratrol and not the grape resveretrol. If you find a good, reliable

source that is not on back order, let me know.

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Catgirl
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I agree with Steve. It's major tick season right now. The nymphs are as tiny as the period at the end of this sentence. And since most people don't get the EM rash, your odds are higher. That said, stress can bring it all out again.

Dizziness and brain fog were babs related for me. Babs is one co infection no one can afford to let linger. You got better once before, you can do it again. Push forward and hang in there. You can find a doc at: www.lymediseaseassociation.org :)

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Kudzuslipper
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I just want to offer support. I remember you starting nursing school right when I was going through my worst herxes. Your motivation inspired me. I hope you find your way back to 100%
Posts: 1724 | From USA | Registered: May 2011  |  IP: Logged | Report this post to a Moderator
nefferdun
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If you haven't left Colorado, you probably were not re-infected because there are no deer ticks there. The wood ticks now carry Lyme (that is where I got it) but it would be pretty hard to not know a wood tick had bitten you.

You probably have another infection emerging. You probably wore yourself out studying and your immune system was a little suppressed. It could be babesia or it could be protomyxzoa Rheumatica.

They both cause dizziness, brain fog, profound fatigue, headaches behind the eyes and body pain. Babesia makes you sleep a lot but PR gives you insomnia.

Pr also affects the lungs and causes nasal congestion so it is very possible your lung and sinus infection was the beginning of the flare. Plaquenil is one of the drugs used to treat it.

If you have the money you can send a sample of your blood to Fry Labs in AZ and they will analyze it for any abnormalities. I just sent mine in and am waiting the results. The test is about $600.

There are SO MANY things one tick can infect us with.

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

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Clint31
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I relapsed somewhat too, but it wasnt Lyme so much as I didnt clear up babesia and I have rampant epstein Barr virus. Was off abx from 2010 to fwo weeks ago. At one point was running half marathons.

I think this time it's going to kill me.

--------------------
DX'ed Lyme Disease: 7/7/2008
DX'ed Babesia, Epstein Barr, Liver Parasite 8/15/2013.

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stymielymie
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I use plquenil and Zithromax 20 days and the symptoms resid
Also take large dose probiotics and yeast fee until better.
I am in remission for 9 years now but get reoccurance about one or twice a year .
You might here but it should subside in several days.
You have cyst forms in your body that were never killed and I have found I would rather live with them and take a nap every day ,rather than retreat.
The choice is yours,
Docdave

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glm1111
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Check out the PARASITE WARRIORS THREAD. G.I, Parasites and the Filarial Worm Co-infection which many ticks carry, has been the missing lonk for many. www.lymephotos.com

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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Lymedin2010
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True about the ticks. So damn small you will never know. My kids are forbidden to go on the grass and my family knows better.

This year knowing all this my sister, niece, & daughter got bit again. They were simply walking on the pavers and the deck.

My daughter is lucky she saw the one on her belly, if it had gone in her hair we would have never known.

It is a new world out there, you must use extreme caution.

It is mind blowing, now that I started to ask around, just how many people are getting bit and who have Lyme. I don't know any AIDS patients, but persons with tick bites is staggering!

Posts: 2086 | From NY | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
   

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