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Lyme in Florida?
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Lyme in Florida?

Here's the deal. For the past 3 years now I've been suffering from strange and undiagnosed symptoms. These include: testicular pain, abdominal pain, nausea, pelvic pain, ankle and wrist pain, strange reoccurring cough, anxiety, insomnia and most currently brain fog.

I was bitten by a tick nearly 6 years ago. I live in central Florida and was out with some friends adventuring in the forests that surround central Florida. The next morning I woke up and there was a small black tick attached to my upper leg right where the leg meets the groin. Knowing nothing about Ticks at the time I just removed it (probably incorrectly) and went on with my life. For the next few months to nearly a year after the tick bite would continue to itch. I never developed a rash, it looked like any other bug bite, but just didn't seem to go away even after months of time. Along with this I noticed I felt tired much more often, but never really suspected anything terrible, and because of the bite's location near my groin I was embarrassed to tell anyone about it or go to the doctor. Well time went on and about 3 years ago (and 3 years after the initial bite) I developed really annoying right side testicular pain. This pain really freaked me out and after living with it for a few days I finally went to the doctor. He examined me and said it was "probably stress." At the time time I didn't really have any reason to doubt him since he's a doctor and believed it. I got an ultrasound in case and everything was normal so I tried ignoring the pain. It worked for a little, but about a month afterwards I developed an annoying left side abdominal pain. It made me very nauseous and I went back to the doctor. I ended up getting an upper endoscopy and upper bowel series with everything coming back normal. The pain persisted and with it came anxiety and insomnia. Also along the way I got a CT scan and an MRI of the abdomen, both normal.I eventually got a colonoscopy and and capsule endoscopy and even a double balloon endoscopy because they thought they saw something in the capsule endoscopy. Everything came back normal. Eventually the pain subsided on the left side of my stomach but a new one began on the right. It hurt so bad I thought my appendix was inflamed. The pain would come and go but was much more tender to the touch than the previous left-side broad pain. More recently I developed a gnawing pain in my left upper leg, right where the leg meets the groin and in the buttocks. It feels like the muscle is wrapping hard around the joint or the joint itself is hurt. I recently got another CT scan of the pelvis and the abdomen which both came back normal again. Just last week my urologist decided to try some antibiotics in case my testicular pain was somehow infection related. The testicular pain has been getting much worse and becomes a sharp sharp pain that hits every 30-45 seconds but only lasts for a moment. Anyways I tried the antibiotics (ciprofloxacin) and my testicles have not felt any better. In fact they started to hurt more over treatment. On day 8 of 10 of the antibiotics I developed a rash on the head of my penis so I discontinued use. The rash has since improved but is still itchy at times. Also since I started antibiotics I have felt like crap. I had severe left side lower abdominal pain which was completely new and again was something very sharp that occurred every 30-45 seconds. It's not been 4 days since I quit the antibiotics and I've recently been getting bad dizzy spells. They happened 2 days in a row only lasting for a few moments, but on the 3rd day it hit me and wouldn't let go. I felt like I was in some major brain fog for the rest of the night and it felt better the next morning. But then again today it hit midday and hasn't yet let go. It's getting quite annoying. And to top it all off last night I awoke after only 3 hours sleep to some sharp shin pain that AGAIN would occur every 30-45 seconds or so lasting only a second but very severe in pain. I couldn't even fall back asleep and the pain eventually subsided hours later and is now back tonight! Also I have had a strange dry cough for the past few months, but have been told my lungs sound fine. I've also had a general random feeling of being sick and having a fever when in fact I'm fine and never come down with something and when I take my temperature it is usually pretty low, usually a consistent 97.5 according to my thermometer. Also I've had random bouts of back pain, especially tailbone pain.

I've looked into Lyme disease over the years because i remembered the tick bite, but it seems so hard to diagnose. I've talked to some doctors here in Florida but they seem to be clueless about it. I've been tested for it by blood and got a negative result, but I've heard that's very common especially in the later stages. Also I became very curious about Lyme again after taking the antibiotics because I remembered reading about a reoccurrance of symptoms after antibiotics being taken. I believe its called Herxheimer Reaction. I'm not sure however if the antibiotics I was taking (ciprofloxacin) would cause such a reaction with Lyme. Does anyone have any ideas if it's possible I do have Lyme or what steps I can take in figuring it out? All of these symptoms started so suddenly and randomly after years of great health, and every test I get comes back normal! I just don't get it. I'm only 25 years old (male) and I feel like this is very abnormal to feel this way.

Also to mention I've gotten tons of blood work done, multiple physical exams and ultrasounds done and everything has been normal. The only thing that has ever come up is a small epidydimal cyst in my right testicle, however when discussing it with doctors and 2 urologists they both say that that usually does not cause pain especially to the degree I am having it.  

Please if anyone has any ideas or info they want to share with me please do. Thank you so much for reading all of this if you did, I know its a lot. I've been going through so damn much and just want to feel normal again and be able to concentrate on my life. Thanks in advance again.
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Avatar_f_tn
Sorry to hear about your situation.  You have a good memory for all that you've been through.

Ticks can carry more than just Lyme, and each of the other diseases carried ('co-infections') has a whole different set of symptoms from Lyme, so the docs are easily confused.  Lyme also has the ability to take over the immune system (think bad guys taking over the control room at a nuke plant) and causing odd things to happen, like lowering your body temp and generally messing with your body's ability to fight off the infection(s).   All this confuses the picture for docs, who (if unfamiliar with Lyme) are sadly clueless.

My best recommendation is to find a Lyme specialist, sometimes called LLMD, short for Lyme-Literate MD, and get a work up.  Take copies of all your tests since you got sick, if you can get them, because they can be useful sometimes to the LLMD.  Docs don't call themselves LLMDs, it's just patient shorthand for docs who get the concept.  In some states, the medical board has the power to pull the medical licenses of docs who prescribe outside the 'standard' approach to Lyme (a few weeks of antibiotics), so in those states, LLMDs stay out of sight.  

I understand that lymenet [dot] org has a referral function, and you can also search "LLMD Tampa" or whatever you are near.

One thing an LLMD can do is, from your history and symptoms, test you for the likely coinfections and start to unravel the mystery of what is happening.  Tests for at least some of the coinfections are pretty reliable, but the tests for Lyme itself are approximations, esp. the Lyme tests that nonLLMDs give, the traditional Western blot and ELISA.  Because of the tricky nature of Lyme bacteria, the tests are often inaccurate, so diagnosis of Lyme is clinical, that is, based on symptoms and history, and not just on the paper test results.  Unfortunately today's docs are not taught to get their eyes onto the patient and off the test results.  There is another lab called IGeneX that is often used by LLMDs, but nonLLMDs place no value on it (because they think the old tests are just fine, thank you).  The difference is that the IGeneX test looks for actual bits of the Lyme bacteria in your blood (as I understand it -- you can go to their website and read about the test), while the older and less reliable ELISA and W.blot look for your body's immune reaction to the infection ... and the immune reaction trails off signficantly after a while.  Sometimes a doc will give a short course of antibiotics and then retest, to see if your body's immune system will get 'stirred up' to react again and give a positive test result.  

Treatment for Lyme is much longer than for other, more usual bacterial infections, because bacteria are most susceptible to antibiotics when reproducing -- and Lyme bacteria, like the bacteria for tuberculosis and Hansen's disease (aka leprosy), have a very very slow reproductive cycle and have to be hit over a much longer period of time than the typical sore throat.

Also, Lyme has a trick of cloaking itself in slimy shields in the body called biofilms, which make it hard for the antibiotics to find them.  That's one reason LLMDs often treat with combinations of antibiotics, one to break the biofilm, the other to kill the Lyme inside.

Finally, any coinfections may need different meds than Lyme, because the coinfections are not necessarily susceptible to the same antibiotics.  Babesiosis for example is related to malaria, and that takes different meds, but thankfully it is a more direct cure; 'babs' doesn't have the tricks that Lyme does.

About your history of tick bites, maybe 1/3 of people never see a tick or get a rash (count me in there), but a nonLLMD often refuses to diagnose Lyme unless you report tick and rash ... that's because the diagnostic standards for Lyme were (wrongly) established upon the epidemiological tracking standards for the geographic spread of the disease.  The docs who pulled that stunt are still high up in the IDSA (Infectious Disease Society of America) and nothing will change there till the old guys are retired ... tho they leave their legions of faithful behind to plague us -- literally.  

Personally, I also suspect that it's possible to get Lyme and have your immune system suppress it for a long time, until another illness or a reinfection comes along that overwhelms the body's ability to handle them both -- I suspect that happened to me ... first infection:  California; second infection: while visiting back East.  After the first one, I just felt tired all the time, and the most specific symptom I had was that the soles of my feet were sore.  Then when I got sick almost immediately after the East Coast trip, I was terribly, awfully ill, and finally 20 docs later got a Lyme and babesiosis diagnosis from an LLMD.

So my advice comes down to one thing:  find an LLMD.  If you don't have Lyme or coinfections, at least you know.  ILADS [dot] org is the main website for Lyme docs.  Under the tab 'about Lyme', third item down are Burrascano's 'Diagnostic Hints and Treatment Guidelines.'  

Take care, let us know how you do, okay?
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Avatar_m_tn
Thanks so much for all that info. This has been quite frustrating and it seems like you've been through quite the process yourself. I found a LLMD right here in Orlando. Unfortunately they don't take insurance so I'm not gonna be able to see them right away. I'll let you know what happens though. After your diagnoses were you able to overcome Lyme and babesiosis? How was the treatment process after diagnoses?
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Avatar_f_tn
Many LLMDs don't take insurance, to avoid hassles with the insurance company over alleged over-treatment or whatever; the insurance companies have to keep an eye on docs who do that, and unfortunately Lyme docs can look like over-prescribers.  Sometimes insurance cos. will reimburse a portion if you submit the paid bill to them.  Just another downside of the IDSA/CDC hegemony.

My treatment for Babesiosis was easy, just taking the meds for several months (memory fades, it's been a few years).  It was two meds.  Lyme is the harder case; the only tougher one seems to be bartonella.  For Lyme treatment, it was again two meds, a cyst buster to penetrate the biofilms, plus a more usual antibiotic to kill the bacteria directly.  That went on for over a year, maybe close to two.  (Hard drive failure ate my notes, so can't say for sure how long.)  I think it's usual to treat for nonLyme ailments first, and then move on to killing Lyme, because Lyme takes longer to treat due its unique attributes.  I suspect there are still things unknown about Lyme and its tricks, but in the meantime, we carry on.

The treatment itself was no problem for me; the biggest risk is that the antibiotics will kill off all the 'good' bacteria in the gut, leaving it open to potentially dangerous colonization by 'bad' bacteria.  Taking probiotics at times not close to the medication times is important to re-seed the gut.  (I had problems with yeast-type probiotics and now take only regular bacterial probiotics such as acidophilus-based.)

Re-enforcing your immune system generally is important to, so if you're not currently a vitamin and supplement fan, you'll become one.  It's part of doing battle against the Lyme, which is always busy with its little tool kit tinkering with your body metabolism, etc.  

Exercise is important, but all things in moderation as Mr Franklin said.  Eat well, sleep enough, eat decently, take your meds.  

If you're interested in an eye-opener of a book about the politics and science of Lyme, read Pamela Weintraub's 'Cure Unknown', in paperback.  She's a professional writer in the science/medicine field, and when her family got repeatedly misdiagnosed but actually had Lyme, she got her own back by writing a book about the mess that mainstream medicine has made of it all.  Pure hubris.  If you want more scientific data, besides the ILADS [dot] org website, there is also the Columbia U. Lyme center run by Brian Fallon.  Google/search 'columbia university lyme' and you'll find the links.  Lots of stuff there.

Let us know what you hear from the doc --

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1754163_tn?1312327770
Holy crap! DejaVU, I can relate!!

I was sick with anxiety, diarrhea and night sweats from about age 18.

I figured diarrhea (EVRY DAY FOR 4 YEARS???!!!) was from drinking alot of draft beer in college at first. After Anxiety got SOOO bad, I rarely talked to anyone unless I was **** drunk...and the Night sweats became uncomfortable, I started to put "2 and 2 together".

I was on every SSRI (Anti-depressant) in the book, tons of anti-psychotics, sleeping pills (after alcohol started to make me too sick to help me sleep.), I got MAD! I DEMANDED Xanax! The Xanax hardly worked at all (Oh, I tried Klonopin b4 to no avail at all.). I lied to myself and told the Dr,'s it worked WAY BETTER than ANYTHING else I ever tried. It did....however it wasn't even close to making me sleep well and cut thru that SUPER-butterfly feeling in my gut. To the extent of nausea and losing my mind w/ frustration. -I'd punch holes in the walls of my apartments, doors, car parts, myself etc... The omly time it would work well enuff was when I'd take 2 or 3 days worth of xanax all at once. I was on .5mg's: 5X's/day.

I would experience fatigue, a tiny bit of soreness in my body like I was sick....24/7.Cluster-type migraines (The worst.), and night sweats mostly. Oh, and the chronic, unrelenting diarrhea, which soon gave me hemorrhoids.

I suffered like this for a few years and moved to florida (Ft. Myer's) for work. Within a couple months, I developed a bad flu-like illness. I waited and waited for it to go away. I knew it wasn't a bacterial infection due to the symptoms. I felt real tired, hot/flush-feverish, and soooooo tired I just wanted to lay in bed, couch, the floor. I couldnt go anywhere b/c of the discomfort.
This went on for about 4-5 months before I thought I better go to the Dr's. I've had Mononucleosis before. I got tested for that quickly.....clean. The Dr. ran a battery of tests and told me I'm not really sick. I had slightly high blood pressure, but my body temp was only 97.5 degrees avg. It felt like a fever though...constantly sweating. Reminded me of people w/ Malaria in Africa....sweating profusely. I couldnt tolerate heat OR cold I found out later.
After a couple more months, I got to a point where I was tolerating my discomfort a bit better. I started to think it was low Testosterone cuz I was turning 35 soon (Old to me then.). SO, I asked for Testosterone replacement therapy. the My Dr.'s ANIMATELY said "NO WAY!!!!". I Also had no sex drive left so pushed that and it stilll didnt work. Even tho my test levels were borderline low-- to the point of hypogonadism. I was just a few measley points away from being out of low range and intervention.

I got so mad I searched for an open-minded Dr. that I thought would help me get testosterone. He was expensive and didnt accept insurance. I didnt care at that point still taking the Xanax and suffering w/ anxiety and the rest.

B4 he would give me the test. he wanted to do a battery of blood tests. 20-30 tubes worth!!
I figured its worth it...so what.

The testing came back where I had tested positive for Lyme (Borrelia Bergdorferii bacteria) disease AND Bartonella (Cat-scratch fever bacteria.).

I went back to my reg doc. and he tested me for Lyme Dz by way of urine....AND a PCR based blood test which bot hcame back 100% clean from anything resembling Lyme bacteria.

I told the new Dr. about these tests and showed him copies of the results. He looked at 'em an laughed. HARD.

He said the urine test wasn't even supposed be that accurate by the manufacturer's standards. You had to be literally overflowing with Lyme bacteria for it to ever come out positive. Same w/ the PCR-based Lyme blood test. He explained to me how small and SUPER highly evasive the Lyme bacteria was. How it does not exist in th efluids of the body normally. Fluids like blood, lymph fluid, urine, CSF (Spinal fluid), interstitial fluid, syliva, bile etc....

Lyme is a longish, super-thin, spiral (cork-screw shaped) bacteria that spins like a drill-bit and literally "swims" thru solid tissue of the human body. In fact, it's much better at "swimming" thru "solid-tissue" like skin and muscle and nervous tissue, cardiac tissue etc...

It's SOOO evasive that it hides from the body's immune system partly by burrowing inside immune cells like B-cells and T-cellls and macrophages and rep0licates inside them like a virus. Then it bursts open the cell and uses pieces of that particular immune cells' outer cell membrane to cover itself like a blanket. Therefore it's virtually invisible to the human immune system most of the time. The fleeting moments it is NOT covered, th ebody DOES mount a little reaction against it and forms antibodies against certain parts of the Lyme bacteria. Parts that are unique to Lyme and lyme alone. Except parts of Syphillis (syphilis) bacteria. They apparently have a similar flagella portion that can be confused....but who has syphillis (syphilis) these days? And how easy is it to treat? It's certainly curable and visible under "normal circumstances with an ultra-violet microscope...unlike Lyme (Borrelia Bergdorferii).

OK, thats a bit of why it's so hard to diagnose....you can't see it. Or easily test for it b/c of this.
So, they test for antibodies that the body is able to make against the Lyme bacteria (which is difficult in itself.) instead of pieces or whole lyme bacteria themselves.

To do this, they run a test called "western blot analysis". This is a test that separates out proteins and identifies them by size. A company called "IGENEX" runs the best test for this. They are located in Arizona I believe? The Bartonella test is as well. Fry test? Fry blood smear. Its a Immuno-fluorescent based test.

Aske for these tests SECIFICALLY. Or go to an LLMD (Lyme literate medical Dr.) and they'll know. LLMD's are persecuted by our corrupt healthcare system b/c treatment for Lyme involves YEARS of combination antibiotic treatment. You know how expensive antibiotics are right? It would theoretically cost the insurance company's Billions if this were commonly accepted throughout the medical community

As soon as I started the antibiotics, I got a Jarisch-Herxheimer reaction. The 1st month I was on a moderate dose of ceftin. Got Chronic Fatigue symptoms EXACTLY!

The 2nd month I was moved to Zithromax, Rifampin and omnicef.....I almost immediately (within an hour or two) swelled up at my joint sites, developed an immediate INTENSE intolerance to alcohol....even a sip or two, Anxiety SOOO bad I was taking hand-fulls of xanax at a time and I didn't sleep for a moment for the 1st 3 or 4 days!! I in such pain, my face swelled, felt feverish, no appetite, just could only lay still in bed and moan and cry.

I cut back on the antibiotics and the reacction subsided. I resumed th emeds at a lower dose and the same symptoms came back, but at a less severe level.

AFter years, of this I slowly got better and better. I moved to a PICC Line inserted into my inferior vena cava which emptied into my heart. I would IV push Rocephin 1 gram/day at first...then 2 grams, then even 3 grams for a couple months.

After a year+ of IV Rocephin added to Flagyl and Zithromax and herbs etc....I got better!

You can find an LLMD in Florida. In N( j_marschner***@****)if you want the name. He can get in trouble and so can I if I give it out publicly.

he gave me othe poweful meds to treat the symptoms that will help you get thru the whole ordeal.

Sk me whatever. I may be able to help you.

jim
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1754163_tn?1312327770
My P.M. contact info got messed up.

"j_"continuosly w/ "marschner" at the hot male dot calm is a good address.

Ask me whatever, I know how hard it is to go thru this. The longer you wait....the more permanent the damage done to your body. The harder it ois to get rid of.

Hope you get it.
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1754163_tn?1312327770
By the way....Cipro- is the abx of choice for urinary tract infections...so, it concentrates itself around that area and affects those kinds of bacteria that reside there more than others (Even tho they're Lyme they're all a bit different.). That's probably why you got the rash on the end of your unit.

Alot of bacteria died in and around that area and lots of toxins worked their way out of your skin there. THAt's where they initially penetrated too. Highest concentration is probably there. Prob allergic to some of them. Just lower your dose until the worst of the negative symptoms go away and SLOWLY increase it to the recommended dosage.

The Lyme bacteria crosses the blood-brain barrier and infects the brain. This is why you get the brain fog and dizziness. I had HORRIBLE vertigo. I had to put icepacks on my eyes and forehead. Meclazine and or dramamine cant hurt either.

Cipro will definitely kill some Lyme. Most antibiotics will. Some Lyme bacteria have a cell wall which is where the abx work by destroying the cell wall or preventing it from being constructed. Examples are: Penicillin, Amoxicillin, and IV Rocephin-possibly the best single antibiotic to fight lyme.

Others work from the inside of the bacteria preventing the bacteria from making proteins. Example would be Zithromax. Some forms of lyme lack a cell wall, others do not. Zithromax is good for these.

Still others exist covered in a biofilm which acts like a protective coating from the chemical attack of antibiotics. Flagyl is an example of a antibiotic that penetrates biofilms and kills underlying lyme bacteria.

There are 3 main morphological lyme bact. types. 1. with cell wall, 2. No cell wall. 3. covered in biofilm. Thus the 3 type of antibiotic combination therapy strategy.

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