posted
Hi there, I live in south Florida and as of November 28th, 2011 here are my symptoms, do they sound like Lyme at all? Should I try to find someone to test me and do you know of anyone in south Florida?
Pain in clitoris (nerve pain and tingling) Pelvic pain Tailbone pain (dull throb when sitting or laying on side) Legs and feet tingle and fall asleep all the time sitting, standing,laying Butt falls asleep Recently came down with bells palsy and have tingling all over head Ringing in ears Allergy like symptoms Tonsillitis a lot ( white spots in throat) Overly sensitive nerves it seems Had MRI off brain, pelvis, and lumbar spine which were all fine I had what seemed to be bladder spasms and pain and still don't have normal feeling in bladder Cystoscope just sowed some irritation Also had cat scan of pelvis, normal Periods went from 7 days and heavy bleeding for the last 14 years to light bleeding or just clumps and lasts only 2 days, 3 if I'm lucky, but just recently my period came very early and heavy :/ Always have microscopic blood in urine
Weirdest thing is all of these things will come and go, get better, than back to square one although they seemed to be getting much better, then my hearing got weird, I had ringing and twitching in the eyes and boom, bells palsy now
The doc says he doesn't think the bells palsyis related to anything that's been happening and my MRI would have shown a lesion or something.
This all started one week after I went camping in central Florida (yes, there are deer) and one year after moving back to Florida from living in North Carolina for 2 months (one night I found a tick in my bed, but don't remember being bitten, but I spent most of my time outdoors and we had deer all over our property.)
I know this is long but I am 26 and have three little girls to take care of. I don't know what else it could be. Or is it just a string of weird medical things and pains that just happened to follow each other for the last 5 months Posts: 4 | From South Florida | Registered: Apr 2012
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
This screams like Lyme to me. �It is a big epidemic and becoming more of a problem everywhere.
The medical community is behind on this information and relatively few people know of the issues. �You will want to seek out an LLMD (Lyme Literate Medical Doctor).
Please be aware that Lyme tests often come back negative, and may not mean that you don't have Lyme. �There are many false negative results. �LLMD know about this and will treat you based upon symptoms.
Tick bites can often carry many infections, besides the bacteria that cause Lyme and we call these coinfections. �The tests for those may also come back false negative.
Ask for a LLMD number from the seeking doctor section on this website or call your local Lyme support group and ask them.
Please watch a DVD documentary called Under Our Skin, there is a young lady from FL who also contracted Lyme.
Posts: 2094 | From NY | Registered: Oct 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, you need to get a good lyme test. Just know that none of the tests are totally reliable. (See page 7 of document below.) So, even if the test comes back negative, you could still have lyme.
Your symptoms certainly sound like lyme.
In Maryland, anyone with bells palsy MUST be tested for lyme. It is a state law. So, know that getting the bells on top of all of your other lyme symptoms makes it pretty likely that you DO have lyme disease.
I suggest you look at the symptom list (pages 9-11) in this document:
You will see that nearly all of your symptoms are listed there. You may also want to read and STUDY the document to learn about lyme disease.
If you have lots of symptoms and no doctor can figure out what is wrong with you, that sounds very much like what lyme patients go through.
Many people with lyme do not have lesions show on the brain in an MRI, so your doctor was wrong on that.
Because the symptoms of lyme can be so vague and different and come and go, many go undiagnosed with lyme for years. I went undiagnosed for 10 years.
At least get your doctor to order a Western Blot for you. (Be sure it is the Western Blot and not the ELISA.)
The best Western Blot is from Igenex, a tick-borne disease specialty lab in California. It will cost you $200 to have the Western Blot done by them. They don't take insurance. So, start with any Western Blot and go from there. Just know that Quest and LabCorp can miss half of the lyme cases. But, if you get a positive from them, you can take it to the bank. I was positive through LabCorp.
I never saw a bite or got a bulls eye rash either. That is not uncommon.
Finally, I suggest you start keeping track of your symptoms. If you notice that they get worse about every 4 weeks, then you have your diagnosis. You will see in the Burrascano document over and over again that lyme symptoms wax and wane every 4 weeks.
Lyme disease is caught in a major medical controversy. Regular doctors are miseducated to believe that lyme is rare and easily cured. The truth is that lyme is rampant and it is very difficult to cure.
Many believe there is no lyme in Florida or the other southern states. Of course that is not true.
So, you are fighting an uphill battle to get regular docs to work with you regarding lyme disease.
It can be difficult to find a good lyme doctor in Florida. You can contact the lyme support groups in Florida to find someone who takes insurance and will order the Western Blot (from Igenex or any other lab) for you. Just go to Support Groups on left side of page.
A lyme doctor will interview you and decide whether or not you have lyme based on your symptoms and a trial of antibiotics to see how you react. That is how lyme is supposed to be diagnosed. Read it in Burrascano, top of page 7.
Glad you found this site. We will help you all we can.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
sounds like lyme to me. and i have seen fl. people on here and know personally 2 people in south fl that have it.
you need to get tested ASAP. it sounds harsh, but this is one disease that you will get nowhere with at your standard hospital or doctor. in fact there is multiple treatment they will give you that can make you worse.
get the 200.00 and test through IGENEX, all signs point to lyme. the good thing is that you found this site and there's tons of knowledge here.
Posts: 184 | From taking pills | Registered: Oct 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As with others above, my instinct is that your description points directly to lyme. Bells Palsy, expecially . . . the ear symptoms . . . the waxing and waning of symptoms is also classic lyme.
I hope you can find a good Lyme Literate doctor (LLMD). Take care.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You mention "overly sensitive nerves" - very common for even normal sensory stimuli to be too much for those with lyme.
Evid Based Complement Alternat Med. 2012;2012:375671.
Epub 2012 Jan 24.
Wound Healing and Anti-Inflammatory Effect in Animal Models of Calendula officinalis L. Growing in Brazil.
Excerpt:
. . . This experimental study revealed that C. officinalis presented
anti-inflammatory and antibacterial activities as well as angiogenic and fibroplastic properties acting in a positive way on the inflammatory and proliferative phases of the healing process.
=================
Thicker and longer lasting (more oily but with no petroleum ingredient):
Avalon Baby Protective A, D & E Ointment, 3.5 fl -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you so much for your replies. You cant imagine ehat they mean to me, i didnt even expect one reply, everyone thinks its all in my head. I called my PCP this morning, they do test for Lyme disease. They wouldn't give me the details as to what test but it's a start and I will find out exactly which test it is when I go tomorrow morning.
Any suggestions on what to ask about the tests or what to mention so I sound knowledgable? He already thinks I'm nuts because of my symptoms and basically just tole me to take Xanax when this all started last year.
Posts: 4 | From South Florida | Registered: Apr 2012
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posted
You may be on the road to nowhere if you stick with your PCP. At the very least, insist on getting your blood tested at IGENEX. Go to IGENEX.com, test will cost you $200.00 but well worth it.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
It could be Lyme, but it also could be that you have a parasite infection especially living in Florida. Testing for parasites is usually negative and most docs don't have a clue in this arena.
Check out the symptom list at Humaworm and also google parasite symptoms. I would try going after parasites and see if you get any results first.
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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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
One week after camping, bells palsy and found a tick in your bed? Yes (lyme). I think you answered your own question. You're in the right place though. Lymenet is LOADED with info.
P.S. Ditch camping (not worth getting more of a bacterial load added to what you have now). You can also get more co infections with each bite (if the tick has it).
And, I would listen to everything TF has to say if I were you (above). If you click on the little face next to the email icon on her post you can view her recent posts. She gives all of us lots of great info (we are fortunate to have her). Also, Keebler and glm1111(Gael) are great too.
Hang in there.
-------------------- --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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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
When you go to the pcp, tell him you want the Western Blot test, not the ELISA.
Only the Western Blot. Tell him the ELISA is NOT reliable.
Just know that the more knowledgeable you are about lyme, the more you are going to get into arguments with the PCP and other non-lyme literate doctors. Because, you will be saying things to them that go directly against the misinformation they have been taught in their continuing education classes.
So, expect to be treated terribly as you try to get the doc to test you for lyme disease. We get humiliated, treated like we are mentally ill, etc.
The docs will often tell a person that they went on the Internet and now they think they have lyme because they have talked to the people on a lyme site who think that they have lyme.
They will tell you that lyme doctors are just out to make money off of poor sick people who don't know what is wrong with them.
So, be prepared. Once you get to a lyme doctor, none of this will happen, but it is most likely going to happen with the pcp.
If you want to educate yourself on the lyme disease controversy, you can watch a free movie on Hulu called "Under Our Skin."
Also, a Boston TV station did a great show on lyme disease about 2-3 years ago. Here is the link to it: http://www.kettmann.com/Lyme/Save/
Then, click on "Here"
The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it. You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
You will also hear over and over how people tested negative for lyme disease, only to find out later that they actually had the disease.
So, there are 2 "camps" when it comes to lyme disease: the non-lyme literate doctors who believe lyme is RARE and EASILY cured; and the lyme specialists who know that lyme is worse than an epidemic and that lyme is very difficult to cure.
Your pcp will likely say foolish things like you must have a bulls eye rash to have lyme, if you had lyme, it would already have been cured by antibiotics you took for other things, there isn't any lyme in Florida, etc.
So, I recommend you just keep your mouth shut and just say you want the lyme test anyway just in case. Say you are suffering and you need to leave no stone unturned.
Then, get yourself an appt with at least a lyme friendly doctor where none of this arguing will occur.
Posts: 9931 | From Maryland | Registered: Dec 2007
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