posted
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!
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
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
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
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
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posted
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 Posts: 208 | From Maryland | Registered: Dec 2008
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posted
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!
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! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
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
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
Very sorry, both of you. Look on the bright side: you have both recovered once, so you can do it again. Good luck.
Posts: 1647 | From UK | Registered: Nov 2008
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
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.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
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.
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
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: 482 | From Oregon | Registered: Feb 2011
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posted
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
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
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)...
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...
Posts: 1880 | From Earth | Registered: Jul 2013
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
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
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posted
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.
Posts: 482 | From Oregon | Registered: Feb 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
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). Posts: 5418 | From earth | Registered: Mar 2011
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
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: 1728 | From USA | Registered: May 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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 Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
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.
stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
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
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
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* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
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: 2087 | From NY | Registered: Oct 2011
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