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Need Your LD Expertise

Bit by an adult female deer tick on July 28th, removed it within 10 min of the bite but I couldn't get the head out till the next morning (not easy to do). Within 48hrs the headaches started, next day stiff neck and general achy feeling with nausuea and diarreha here and there, bulls eye rash showed up on Aug 9 along with enlarged lymphnodes and a feeling that my head is just not clear, went to doctor and explained everything and she put me on a 4 week bout of doxycycline and in the morning i get my bloodwork done...lyme titers testing? I am really scared now, I just feel like total crap.  People have told me i cant have LD because symptoms dont happen that quick. Is there something else i should be doing? Do i have a chance to completely beat this since i started doxy within 15 days of bite? Will i start to feel better soon? I know it's 20 questions but i have recently learned that most doctors are ignorant when it comes to LD!

P.S. The first doc i saw for a consult told me there no ticks that carry LD here in Florida!
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Avatar universal
Ah, doctors.  What do we do with them; what would we do without them.

You are way ahead of the game in having realized so early you are infected.  Many of us don't know for a long time, which just complicates matters.

Were you tested for other diseases that the same ticks carry -- bartonella, babesiosis, ehrlichiosis, and a few more?  (The first time I was bitten, I got Lyme and babesiosis; the second time, Lyme and ehrlichiosis.)  The tests are specific, and treatments may be different from one infection to another, so testing and considering symptoms is important.

You ask if you should be doing something more -- follow up with your Lyme doc, read as much as you have the energy and focus for, rest, eat well, all the things Mom would tell you to do.

Four weeks of doxy is a good start, and I'm assuming it was prescribed as a cautionary measure while the tests are being processed.  Blood tests are helpful, but they are not the last word, so I'm also guessing that your doc prescribed the doxy to jump on the infection(s) you likely have, while waiting for the tests.  

You are way ahead of where most of us were at your stage of illness, so hang in there, let us know how you do, and we're happy to help with any commentary we can.  

Best wishes --
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Avatar universal
I will def keep you posted on the new tests.  I am very excited to compare with the other tests my doc sent me in for...though they wont be back for a week or 2 but CFR has a 48 hr turn around and they are in my state.
My blood pressure has always been low, never feel faint or anything. When i am pregnant my bp is really low, which is supposedly normal for pregnancy
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Avatar universal
How good to hear that you have had a good 9 hours!  Those are the times to memorize and recall when you are feeling down.  It gets me through the bad days.

Do you know why your blood pressure is low?  Mine is always about 110/70 when I am in the MD's office, so they pat me on the head and say I'm fine ... but that's when I'm amped up by being IN the dr's office.  Then in 'real life' when my BP is scraping bottom, I wonder and worry, tho I never feel faint.  Any thoughts welcome.

About this new Lyme test, will be very interested to hear about your experience -- keep us posted.  
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Avatar universal
Did more research and the salt/c method sounds like it can do more harm than good so that will be a no-go. I have low blood pressure too, i get asked if i'm ready to pass out.  

I also forgot that my doc also gave me a script for Mupirocin ointment to apply 3x day on the bite/rash area, i havent seen anyone mention this but it works wonders!    

I accidentally found this place -

Central Florida Research is not your typical testing laboratory, all we do is test for Lyme disease.
Unlike other Lyme tests, CFR's LATFC test, only available at Central Florida Research, can detect Lyme in any of its three stages:

Stage 1: Early localized infection – 1 to 4 weeks
Stage 2: Early Disseminated infection - 1 to 4 months
Stage 3: Late Persistent Infection – months and years after infection

Central Florida Research offers patients FREE Lyme disease test kits and can have your test results ready in as little as 48 hours. Our test process consists of 3 easy steps:

1.Obtain a FREE test kit by submitting the order form on this page
2.Visit your doctor who will take a blood sample and fill out the required paperwork
3.Return your sample to CFR, pay for your test (see pricing) and receive your results in as little at 48 hours.

I am ordering my free test kit Monday morning..mind you the test kit is free but the actual test cost $250.  I know this may sound crazy but I am sooo excited to find a lab that is focused only lymes.
P.S. I had a really good 9 hrs of the day today!
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Avatar universal
I've read about the 'Salt/C' approach, and haven't found enough information to know whether it makes sense and whether it's dangerous.

For people who are salt-sensitive and their blood pressure goes very high when they take too much salt, it could well be dangerous.

For people like me (I have fairly low blood pressure, sometimes down as far as 80s/40s, which I would have thought only corpses have), it might not be dangerous, but I just don't know.  I haven't read anything about the dangers except a flat statement that Salt/C is dangerous.  Not helpful, eh.

I also don't know why it's supposed to work, so unfortunately I don't have an opinion.  I'd be interested to hear what others think too.

(PS -- I think sea salt is not 'pure' sodium chloride, because evaporating the water out of sea water leaves lots of things [including minerals of various kinds] other than sodium chloride.)
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Avatar universal
Almost forgot...along with drinking 2-3 qts of water daily
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Avatar universal
I wanted to run something by you and tell me what your opinion is on this, I found this site to be a VERY interesting read (faq's too) lymephotos *******. I am seriously considering trying this, it makes sense!
3000mg vit C and 3 grams of pure sodium chloride (pure sea salt)
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Avatar universal
I see the bot put asterisks in the website addresses above.  Each of the starred ones should be dot followed by com.  heh heh.
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Avatar universal
HPA is the hypothalamus-pituitary-adrenal endocrine loop.  And that's about all I know about it ... just that Lyme can mess with the whole endocrine system, but it gets overlooked.  I did a google search for the term a while ago, and there are some nifty charts and explanations of how it works.  I just don't know how Lyme causes it to malfunction ... but apparently not a lot of MDs know either, ha.  I figure my thyroid probably gets confused in the midst of all the biochemical chaos too, since in Mother Nature's great wisdom, we are each an elegantly integrated organism.

Keep snooping around looking for an LLMD -- they don't advertise, and indeed try to keep a low profile.  I have read that some states (Texas?) are losing their MDs willing to treat Lyme aggressively because of action by the state medical board against any MD willing to follow their conscience.  Try these websites for leads to an LLMD:

lymediseaseassociation dot org
truthaboutlymedisease *******
lymenet dot org
chroniclymedisease *******
and a google or other engine search for "jacksonville llmd" may fetch up something

It's true that some people have to drive quite a ways to get to an LLMD, but appointments are not all that frequent once diagnosis and a treatment plan are established.

Each LLMD has a different treatment approach, and it depends partly on what coinfections you have, but my LLMD is very aggressive about antibiotics, and treatment over a long period of time is not uncommon.  Lyme bacteria have a very slow reproductive cycle (perhaps 30 times longer than regular bacteria, and it is during reproduction that the bacteria are susceptible to abx--?), so the 2 weeks' treatment you get for an earache is useless for Lyme, and a longer treatment is needed for that reason alone, so I have read.  

In addition, Lyme has the ability to cloak itself in so-called biofilms when in an adverse environment, so specific meds like Flagyl are needed to break into the cyst/biofilm structure where the bacteria hide so that other meds can kill the bugs.  Some MDs 'pulse' antibiotics instead of a constant barrage, which is contrary to the usual wisdom about not giving the bug an opportunity to develop resistance to the abx, but pulsing is done on the theory that the bugs go into hiding inside cysts/biofims when in an adverse environment, so luring them out into the blood stream where the abx (when resumed) can kill them is the theory, as I understand it.  

You are right that treatment depends on coinfections present.  My babesiosis was treated first, and then when it was gone, we turned to treat the Lyme.  There was some overlap in the treatment because both bugs are susceptible to some extent to some of the same drugs, but babesiosis itself was awful compared to 'only' Lyme, and treating it first was the right thing to do.  It is questionable whether my Lyme infection is cured or is just quiet right now; remains to be seen.  The tests are not all that accurate, and with the bacteria's ability to hide in the body, it could be lurking.  Who knows.  I was diagnosed about 6 months after becoming extremely ill, but it's also possible I had a low level Lyme infection from several years before, since I had some little symptoms like fatigue and occasional heart palpitations that my docs couldn't figure out; it was only when Lyme and babesiosis hit me like a truck that I finally found my way to an LLMD (after dozens of MDs shrugged and sent me home -- I'll spare you the boring details).

I highly recommend 'Cure Unknown' by Pamela Weintraub (now in paperback) for a gripping tale of Lyme by a journalist who specializes in science topics.  It blends personal stories with politics and science.  The title is unfortunate, such a downer.  I don't know why they named it that.  Amazon has reviews of the book fyi.  There is a documentary called 'Under Our Skin' that is popular, but raises anxiety without allaying it, so it annoys me.

Take care
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Avatar universal
I was doing some reading online last night and discovered alot of people mention thyroid issues as well.  I checked on the bloodwork i just had done and my new temp doc also ordered those tests as well.  Normally i get my thyroid bloodwork up every 6 months in order to get my script and i just had it done in March.

I am in unknown territory down here. I am from MI and moved to Fla in June and Sep 1 we are moving up to Jacksonville for the next 3 yrs, I have been trying to find an LLMD in that area but so far i can only find 1 in Ga. Our kids are out on their own and this is supposed to be "our time" and like i told my husband...i will do everything i have to so this doesn't destroy my life!  I am going to stay positive!

It makes me sooo angry that the medical profession is so ignorant to tick diseases!

Gonna have to look up HPA axis...not sure whaat that is yet.

Why so long on abx?  Were you diagnosed late? Or does that have to do with the coinfections?
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PS -- Lyme can muck with your 'HPA axis' so your thyroid issues might get stirred up again.  Dunno.
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Good for you!  I've recently started on thyroid supps, and it took a lot of MDs not to know what was going on before someone finally figured it out, on top of Lyme etc.

So you're now my role model -- and you are perfectly prepared to deal with Lyme because of what you learned in earlier years about being aggressive.

I spent about 1 1/2 to 2 years on abx against Lyme, got a systemic fungal infection that nobody diagnosed for a long time, and over a year ago took myself off the abx.  Found a new MD and have been working on building up my immune system and getting sorted out.  Thyroid was one of those issues.  I've also recently tried Cat's Claw and got good results from it, tho stopped after a while after reading that the bugs build up resistance to it.

Sigh.

I found Burrascano's 'Treatment Guidelines' on the ILADS [dot] org website ... they are tucked away under the tab 'About Lyme'.  They can get overwhelming, but I get the feeling you can cut them down to size.

Getting tested for coinfections is a biggie -- I don't know what the stats are on coinfection, but they complicate not only diagnosis but also treatment and recovery.  And I've read that having two infections doesn't just make people twice as sick; instead there's something of a multiplier effect.  Dunno why, but I believe it.

Keep us posted on what you hear from Imugen.  
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Avatar universal
Thank you so much for giving me a postitive outlook!  
I learned at an early age to be aggressive with doctors, at age 18 my body started going through some major changes, i spent 16 months in and out of the hospital and so many tests my veins would collapse, nobody could figure out what i had and eventually told me it was all in my head...i was irate..so after many nights at the library I diagnosed myself, took a trip to to the endocrinologist and stated that i wasnt leaving until he performed a list of tests i had written down, he refused and i spent the night outside the drs office and when he came in the next morn he very reluctantly tested me...just as i suspected, I had hypothyroid disease!  The doc told me the reason i was never completely tested for that is because it generally occurrs in women over 35, 16 months of hell for a doctors assumption!  



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Avatar universal
Good for you!!!

I didn't ever see my first tick or have a rash, and the first 10 or so MDs I saw were clueless, as was I.

My second tick, however, I did find, and like you I had it tested at Igenex labs here in California.

I would think more than 4 weeks abx is called for, from what I read, so I'm glad you will be fully medicated.  

You are doing all the right things, and you get big points for being aggressive and focussed.  You go, girl!

Let us know how you do -- it's always inspiring to hear a story of how events *should* unfold when the ticks strike.

Cheers!
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Avatar universal
Thank you so much Jackie!  I have learned alot about LD since the bite and read alot of patient profiles, it's amazing what people have to go through to get help.  If I didn't know i was bit by a tick I would have brushed off my symptoms as coming down with the flu.
I talked with someone from IMUGEN, INC out of Maine and I am sending my tick there to be tested for lyme as well as the other diseases they can carry just to give me peace of mind.  I also read that that 4wks of doxy in the early stages is usually not long enough, need 6-8 wks just to be sure.  I wish i would have gotten started earlier but the first doc i saw pretty much blew me off and the only reason I'm on doxy now is because i read alot of forums and patient profiles, went to another doc and the first thing out of my mouth was "I need to be treated for Lyme Disease asap".

I will continue to educate myself daily!
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Avatar universal
PS  There is an MD named Joseph Burrascano who is a leading light in the Lyme world.  He has written and updated regularly 'Treatment Guidelines' that are aimed at MDs but are available to patients too.  

They used to be posted at ILADS [dot] org, but I couldn't find them there recently.  They are however in other places, which I found by googling/searching 'burrascano treatment guidelines'.

I am nosy and like knowing what my docs know ... or should know ... as a matter of self-defense.  You don't have to get that deep into it, but the data is there if you do.
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