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Posted 7/13/2009 10:16 AM (GMT 0)
Hello, I am a 50 year old female. Five years ago, I had a tick bite on my bicep, that looked exactly like a lyme disease picture. Went to the doc, was given an antibiotic cream, and told it was just infected. Went on with my life as normal. Three months ago, I developed Bell's Palsy. Only lasted a couple weeks, but I have been nothing but strangely sick ever since. The doc ran a lyme test during the Bell's, but it came back negative. My family and friends all think I am turning into a hypochondriciac, and are not understanding at all how I feel, but every symptom and feeling I have had leads me directly to Lyme! I go back to my doc on Thursday this week, I am armed with info, thanks to this site. I have a highly physical and mentally challenging job, and all I can do is barely make it through work, BARE basics at home, then off to the couch to suffer all the weirdness. Strange pains in random parts of my body,headaches,twitching of muscles,the other night, I sware it felt like I had bugs crawling on my feet...unexplained fevers, not able to eat much but fruit, extreme thirst, irritability, panic attacks, feeling my clothes are suffocating me..I have always been a weight lifter, but now I seem to have no muscle, every little thing takes major effort, muscles seem totally heavy..anyway, does it sound to ya'll like I am on the right track here, to request that my doc investigate this further, or would the lyme test have already been positive? Thanks so much for not thinking I am crazy....
Posted 7/13/2009 10:33 AM (GMT 0)
Reborn,

Welcome to the forum! First off, I just want to tell you to look at the "sticky's" we have posted on the Lyme Disease page. It has a ton of information.

If you had the tick bite and especially a rash, your doctor should have treated you with at least, 6 weeks of Doxy. I cannot believe they gave you a cream. Having Bells Palsey after a tick bite is a tale tale sign that you have Lyme Disease. Lyme Disease can definitely give you weird symptoms and because it affects our entire body, we are told it is all in our heads and people sometimes do not believe us.

Is the doctor your dealing with Lyme Literate? If not, you need to find one in your area so that you can get treated right. Also, there are co-infections that sometimes come with Lyme Disease. That could explain the fevers you are running. I get them myself every month.

Unfortunately, the Lyme test is not always accurate. If you are dealing with Chronic Lyme, it's hard for the test to pick up the antibodies in our blood because the bacteria hide in our muscles, tissue, etc.

Ticker is a long time member here and she can help you find a Lyme Doctor in your area.
Posted 7/13/2009 11:49 PM (GMT 0)
Sometimes the weaker the immune system, the less likely you are to test positive even if you are. My daughter has it worse than me yet often tests negative. And oddly it is when she is feeling better that the test is positive. When she feels her worst, the test is negative.
Posted 7/14/2009 11:43 AM (GMT 0)

Hi Reborn, welcome to the board!

Did you had a bulls-eye rash on your bicep?  Although only about 50% of people who have Lyme ever get a rash, a bulls-eye rash is a definite sign of Lyme disease.  The rash alone merits treatment.  Lyme disease is a multi-system bacteril infection, the rash is only one possible symptom.

You are not crazy.  Your symptoms sound very Lyme-like to me.  Below is a Lyme symptom list.  You can have any combination of symptoms.  

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing

Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol 

When Lyme disease is a possiblity, it is very important to see a knowledgeable doctor.  Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.  It is my understanding the ELISA or titer is the least reliable test and the one most doctors run first.  Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma.  Many people who have Lyme are co-infected.  It may affect treatment choice and progress.  It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. 

If you need a doctor recommendation, you can email me at [email protected]

It is also important to learn as much as possible.   I recommend reading Dr. Joseph Burrascano's 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne lllnesses  at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.   He discusses antibiotics and doses starting on page 18.   I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton M.D.

Hang in there okay?  Good help is available.

Posted 7/14/2009 1:30 PM (GMT 0)
Thank you all for your replies. TICKER,I have an appt this Thursday morning. If I am not satisfied with the docs reaction to this, I will e-mail you for some different doc info. The tick bite I had was 5 years ago, in the Ozarks, Mo.,close to the Arkansas border. After checking different listd of symptoms, I am almost convinced this is what I have. My bite did look exactly like the typical bulls eye rash, was very hot and raised by the time I decided to get it checked. I am so grateful I found this site. I have printed off lots of info for my doc, from the various links. I have checked all the symptoms I am having. Everything matches. If this is not Lyme, or one of the other infections, then I think I seriously need mental help. I know you all have experienced this more and longer than I, so you KNOW what it's like to tell a friend that you feel like there are bugs crawling on your feet! Or explaining to a doc that you feel like you need to be naked and in AIR so nothing is touching your body. Or the constant popping and cracking of your neck and back that NEVER stops, or gets relief. Or the feeling of NOT a stomach ache, but your ribs feel like they've been kicked for days? Or your elbows suddenly feeling fire like pain, or your bicep, or upper leg....just random pain...or telling your boss that you are experiencing fevers almost every night....or the blurred vision that comes and goes,or just the sense that you are not able to lift a muscle to do the next task at hand? It is no wonder that depresssion and anxiety also acommpany this. If this is NOT Lyme, or something along these lines, then I AM going crazy. I will definitely stay in contact over the next few days and keep you posted. I am NOT going to allow this doc to just tell me again, that this all residual of the Bell's Palsy from 3 months ago. It may be, but SOMETHING cause the Bell's to start with. Thank you again,
Reborn
Posted 7/14/2009 5:33 PM (GMT 0)
Also doctors dont use the proper testing labs and certain labs dont test for all the strains of lyme so you will not test positive if you do not test for all existing strains . igenex is the lab that tests for all strains this is where you need to test w a western blot from. you can call igenex and have then send you a western blot testing kit and bring it to your doctor to set you up w a lab to draw your blood and give you back the tube to send through the fedex bag they send to you with the kit . your doctor just needs to write a prescription paper to the lab stating fill the tube and return to patient, so you can bring it to fedex for shipping. or you can find a lyme doc, you can ask ticker or email [email protected] give her the area you nd a lyme doc she emails you back the ones near you.
Posted 7/15/2009 2:50 AM (GMT 0)
Reborn,

Good luck with everything!
Posted 7/15/2009 11:37 AM (GMT 0)
Well...I got into the doc yesterday, since I stayed home from work. I was surprised, he actually read all of the info I took him that I had printed from links from this site. He was very open to all the recommended testing! He was so nice, told me of course I'm not crazy, and between the 2 0f us, we will figure this out and get me better. I am going in a few minutes to get blood drawn, for this myriad of tests. I do believe it helped my case, that while I was there, I did have a fever of 101.00, and my feet started doing one of their weird twitchy crampy things, and my arm started having shooting pain...then I had a total emotional breakdown...lol..anyway, he is also testing for lots of other things...hormones, thyroid, lupus, magnesium, b-12, just all kinds of stuff. I am open to what he says, but I really do think I am on the right track. He has also ordered the Western Blot, so I think thats good...okay, gonna go get blood taken so I can get some coffee soon! Thanks again for all the invaluable info!
Posted 7/15/2009 11:52 AM (GMT 0)

Hi Reborn.  It sounds like you are on the right track considering you had a bulls-eye rash years ago.  I am so glad your doctor wants to help.  It is always good to have other things checked also.

I recommend getting tested through IgeneX in Palo Alto, CA.  The Western Blot test lists a series of numerical bands with a + - or IND rating after each one.  Labs such as Quest and LabCorp do not list all the Lyme-specific bands that IgeneX does (I believe they do not list bands 31 and 34).  Be sure you are tested for the co-infections also.

One of the tests for Lupus is an ANA.  Some people who have Lyme have a positive result.

Good luck!

Posted 7/24/2009 10:14 AM (GMT 0)
Hello all, just wanted to check in and let ya'll know my progress, or should I say lack of! I have called my dr. office several times asking about my tests. All they will tell me is that they are not back yet. It has been 10 days today...but here is the kicker! The ones that ARE back show my hormone levels are off, so they think I am going through the CHANGE! I was like, are you KIDDING me? Haven't had a period in 8 years, and I'm just NOW feeling these symptoms? Whatever....So...I'm trying to not get all pissed until the rest comes back..the WB specifically...anyway, hormones? That would not explain fevers would it? And woudn't an infection or something like Lyme AFFECT the hormone level? Also, have a quick question. The last week, I have suddenly started to feel almost normal! Lots of energy, no fevers, the only thing is these continous weird random pains that make no sense. But they kind of come and go. With Lyme, is it normal to feel better at times, then bad at others? I mean, do the symptoms come and go like that? Thanks again...
Posted 7/24/2009 11:44 AM (GMT 0)
Reborn,

Yes, the symptoms with Lyme come and go. My good days were so good sometimes that I started second guessing myself whether I was really sick or not. But then the bad days would hit like a ton of bricks and it reminded me how sick I truly was.

And you are correct regarding Lyme disrupting your hormone levels. It can also wreck havoc on your thyroid. Is your doctor checking you thyroid levels as well?
Posted 7/24/2009 12:45 PM (GMT 0)

Hi Reborn.  Which lab did your Western Blot test?  Were you tested for co-infections?   What meds and doses are you taking?

Lyme symptoms do wax, wane, and migrate.   Going through treatment sometimes feels like one step forward and two steps back.  Make sure you are documenting your symptoms daily.  Over time this really helps to show patterns and how you are responding to the meds. 

Lyme can affect thyroid, adrenal, and hormone levels. 

 

Posted 7/24/2009 2:54 PM (GMT 0)
Reborn, Do yourself a favor---a huge favor and get an appointment to see someone who is familiar with Lyme and co-infections. I went the route you are going--trying to see my primary and others who were in my insurance plan. All of them failed me miserably. I saw over 32 doctors--many of them "specialists" but not one ever believed I had lyme even though I had 3 bulls-eyes within several years. My symptoms were blamed on everything from change of life to Lupis.

In the end I had Lyme, bartonella, babesiois micoplasma, Hashimoto's thyroiditis and who knows what else. I used to be an extremely active person but because I trusted many uneducated doctors I am not active any more--because I cannot be. Lyme literate doctors usually don't take insurance and it can be costly but insurance usually covers the meds. Whatever the cost you would be saving years of misery, unneeded tests and misdiagnosis. You need to start to kill the bacteria steady and long enough.

Have you seen the movie "under Our Skin"? You will probably see much ofyourself in it. I have an extra copy if you would like. My email is in my profile.

Blessings
Posted 7/24/2009 5:39 PM (GMT 0)
Hi Reborn!

I wanted to say Hi, first, since I didn't say it when you first posted.

When I started reading this, I was so happy for you, because it seemed like your doctor was going to listen, and consider Lyme. Hopefully he'll still be willing to consider it- even though your hormones were off.

But I would agree with minerals- you probably want to see an LLMD. Your doctor might be very open-minded, but he won't know how to treat Lyme. If your doctor is willing, I know people who go and get a treatment plan from an LLMD, but then bring it to their PCP, and get treatment through their PCP (so it is covered by insurance).
Posted 7/25/2009 9:41 AM (GMT 0)
First of alll, I really want to say thank you to all of you who have responded. I appreciate your compasssion. Although knowing that compassion comes from years of suffering, which makes me sad for a lot of people. I am pretty sure that you all are correct in the advice about going to an LLMD. And more than likely, if something drastic doesn't happen soon, that is where I will end up. At this point, I am going to wait on the rest of the tests to come back and see what my doc has to say, then make decisions from there. I have to be very honest, no reason not to, but right now, I think I am so afraid that if this is Lyme, that going to all these doctors, doing all this research, treatments, being sick, etc..ALL that is involved, including financial, is going to monopolize my entire life. I think those kinds of thoughts scare me as much as being sick. And I am one of those people, probably like a lot of you, who HATES medication of any kind. There is ALWAYS some stupid side effect or something, that makes you not feel like yourself. If anyone thinks I am feeling sorry for myself, feel free to say so..lol..I probably am. The emotional aspect is something for sure, that most people around me don't seem to get. HURTING all the time, sucks! and sometimes it just gets me grouchy and irritable. Although right now I am feeling pretty good, still not totally my normal personality. I will definitely keep in contact . Thanks again.
Posted 7/25/2009 1:32 PM (GMT 0)

Hi Reborn.  In my opinion, to confirm or rule out Lyme disease it is imporatant to see a knowledgeable doctor.  Many other doctors follow outdated treatment protocols and do not understand the unreliabilty of tests.  You may want to consider making an appointment with a Lyme doctor now because it can often take time to get in.  You can always cancel it later if you decide not to go.  If the doctor is booked, ask to be notified of any cancellations.  This may get you in sooner.

You are right that no one wants to be sick and/or take medication.  If you do have Lyme, it is very important to learn as much as possible to ensure you are getting the best treatment.

Posted 8/1/2009 10:17 AM (GMT 0)
Okay....so all my blood work came back normal, and now they want me to see a neurologist? I am SO frustrated right now, I just KNEW these tests were gonna confirm my suspicions of lyme. never really talked to my DOCTOR, just someone from the office relaying a message, so I am not sure what the neurologist is even looking for. But they are now calling this "neuropathy"....I looked that one up, and I was like, "DUH.... but what is CAUSING IT?" Now this may sound nuts, but I just in my GUT feel like I know what this is. LYME. I had an MRI back in March, right after the Bell's Palsy, it came back normal, so now I don't think they're gonna find anything by doing another. More waste of my time and money. I connected recently with a friend on facebook, who has been sick for a year, and was just diagnosed with Lyme. She was looking for a LLMD...haha...someone gave her a name in the area, so I am going to call this guy, but it sounds like he has a long waiting list. I am also going to go pick up ALL my blood work, and stuff that they have at my doc's office on Monday. I just want to see if they actually sent this stuff to the correct lab, did all the tests I told them about, etc. Any more suggestions on what to do from here, I will gladly take. Do ya'll think I should go ahead and do the neurologisit thing in the meanntime? I am actually feeeling pretty good right now, except for random weird leg pains and neck pains...like hot needles for a minute, then it goes away. Oh yeah, my left leg started twitching uncontollably last night, like a reflex that wouldn't quit...good grief...fortunately, I am able to work, I am a food server at an extremely busy restaurunat, carrying large trays all day, so when I get home at night, I'm pretty much done! Okay, I know this is long, and I kind of feel like since I haven't been officially diagnosed, that maybe i don't even belong here, ya know, but I thank ya'll for listening to my rantings anyway.
Posted 8/1/2009 11:32 AM (GMT 0)
All of my blood tests came back normal, negative WB test through Quest(2 bands pos on one, 1 pos band on the other), negative test with IGENEX (3 bands pos,2 IND, 1 band pos on the other).

I have been in treatment with an LLMD for 8 months. No doubt in his mind I have Lyme. No doubt in my mind I have Lyme. How else would we explain all of my herxing?

Had a bulls eye rash. Never saw a doctor for it. Looked more like ringworm so I never had it checked out. Thought possible poison ivy. But didn't itch. How stupid was I?

Did not get treatment at all for 9 months. Then only 3 weeks of doxy from my pcp because I begged. From there ended up at a quack ID specialist. No help. Then 5 more months with no treatment until I saw my LLMD.

You had the rash. Don't end up like me. Get into an LLMD as soon as you can. Don't waste time with the neuro, it will just prolong your treatment. It is Lyme and you need help soon. Don't let it get worse. Learn from my mistakes.
Posted 8/1/2009 3:57 PM (GMT 0)
HI Reborn!!
Welcome!! You will find a lot of support here on HW. Gld you could join us!!
I had to be on a high dosage of Minocycline for a year before I tested pos.
I wish you the best with your docs' appt., but if your doc just thinks that the tick bite was just 'infected', you may need to find another doc. There are Lyme-friendly docs out there - they understand enough about LD to know that they don't know enough - like my doc. But he reads anything I take to him.
I would have to drive 5 hrs each way to get to a LLMD - which I cannot do any more. Last time I tried I stress my body out so bad that I had three minor seizures on the way home. SCARY!!
Anyway, best of 'luck' to you...
Trav
Posted 8/1/2009 5:23 PM (GMT 0)
Reborn,

Find and LLMD and quickly! They are the only ones that understand this disease and will be able to treat you correctly.

Also, when you get your lab work, post it here and some of the senior members here willbe able to tell you if you have Lyme specific bands.

The Lyme test is not accurate and even though your test was negative, it does not mean that you don't have Lyme.
Posted 8/1/2009 9:27 PM (GMT 0)
thank you SO much ALL of you. You have already helped me immensely.
Posted 8/2/2009 7:47 PM (GMT 0)
My LLMD once told me "the absence of proof in NOT the proof of absence". He was a great man, who did remarkable research!! May he RIP.
Posted 8/3/2009 4:30 AM (GMT 0)
remember your best bet is for an igenex western blot. they test for the most strains of borrelia (lyme). You can call igenex getting the number on their website and have them send u a western blot kit. To take to a fam doc to do the test they send u the kit for free but the western blot is 200. which will save u aggrivation waiting for proper testing , in the mean time while waiting to get into your lyme doc, u may have your western blot in time to go to the dc for antibiotics.


Nice quote traveler!
Posted 8/3/2009 2:41 PM (GMT 0)
Reborn,
Now that you have all the tests, bring them to a Lyme Literate doctor who can treat you for what the others say you don't have. Don't let the fact that you feel better some times fool you. That is exactly what Lyme does. It comes and goes that is until it doesn't go at all anymore and you are in constant pain and turmoil.
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