posted
I was bitten in August of 2008. The tick was removed sloppily , and came out in parts. I didn't think much about it, tossed the tick and went about my business.
As it healed, the tickbite site was midly itchy. I assumed this was normal (and my Dr assured me so). Over the course of a month it eventually turned into a small dark scar. During that time I developed a large bullseye, on the calf of my LEG, no where near the tickbite (on my lower back).
The rash on my leg was VERY itchy.. my Doc used the blacklight and Dx it as Ringworm, and gave me some cream. He said it will clear right up.
Not so. The cream didn't seem to help .. the itching continued as the rash grew larger. I went back to the Dr after using up my Rx (including the refill).
Dr seemed puzzled, saw that I was developing some rash on my scalp. I was put on an oral antifungal at that time, and began to use head&shoulders religiously on my own.
That did not help the rash either. It actually spread to my other leg half way through the oral antifungal Rx!
This is when I lost my mind... I used hydrogen peroxide diluted 2:1 with water and sprayed the affected areas once every morning. The rash quickly scabbed over in only 3 days. It stopped itching, and went away!! I thought I was done with Tinea and was told my Quest Lyme test came back negative. Life was good!
Now, flash forward 5-6 months later. I have a severely stiff neck, my shoulder blade on the left side will occasionally pull, with VEyr sharp pain for a few seconds. I honestly cannot recall an injury to my shoulder ... and I dont know why this isnt healing!
I also have loud cracking/painful joints (namely both shoulders, hips, ankles, elbows and wrists. My wrist cracked while opening a water bottle, a few times, and it caused my hand to tingle for a few seconds. It really startled me!!). My ankle muscles will occasionally get very sore, like I've walked a very long distance.
I also have frequent night sweats (the shirt soaking kind), have trouble falling asleep, and I dont feel well rested when I awake, no matter how long I sleep. Finally I also have blisters/pimples occurring randomly on my scalp and face. The same pimples that started right around the same time as the "tinea" rash!
Now its March, after visiting my doctor with a list of the above symptoms., I am having a second blood sample pulled tomorrow .... another lyme test, along with thyorid levels. He suspects I have thyroid problems and will be looking for a change in those levels. He also mentioned ADHD!! Or possible that stress is causing these symptoms to manifest. I dont know about that .. but I'm open to any solution so .. maybe?
To me .. after reading almost all of LymeNet and related sites... it sounds like I need an LLMD to get me started on Abx ASAP, even if I cant get a positive test result yet. I have too many symptoms that correlate, and they all line up im time.
Unfortunatenly I havent yet found an LLMD that will take my insurance .. I'm unsure If I can afford to pay an LLMD outright! My current Dr thinks preventative Abx is not worth the risk.
Should I bite the bullet and go to a known LLMD anyway, paying out of pocket? Or should I continue seeing different insurance-covered doctors until I can convince one of them to give me antibiotics, and re-test me hoping for a positive for Lyme with the Abx?
What would you recommend I do? I am 24 years old, btw.
Any input at all would be appreciated.
Also, I'm actively seeking LLMD's on Long Island in New york. Please send me any if you have them!
Thanks for listening
[ 03-23-2009, 09:21 PM: Message edited by: smartfast ]
Posts: 9 | From Long Island, NY | Registered: Nov 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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You had the tick attachment. You had the bulls eye. You never needed a lyme test. EVER. The bite with bulls eye rash is 100% positive for lyme.
Tests are not 100% reliable. That bulls eye was all the proof you need. You might also need to have the bite site examined and if there are any tick parts left, they should be removed.
You need to find an ILADS LLMD as soon as possible. I know it's out of your insurance but if there is anyway to make this happen, it is not only as if your life depends on it - it does.
You will need to go to the SEEKING A DOCTOR forum and post there - stating in headline the city, state where you are looking:
I will post a lot of links to article and books. Some you may have already seen. But, since I don't know what you've read, I'll post a full starter set.
Best of luck. You are young. You have a good chance at a good life with the right treatment.
My advice is to drop the doctors who don't have a clue. See if your local lyme support group can recommend a lyme friendly doctor who can become your GP to support the treatment by a LLMD.
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I agree with Keebler. Don't waste any more time. Get yourself to a LLMD ASAP.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
**** " . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ." ****
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
Although, since you had the bulls eye rash, you do not need a test for lyme . . .
You should also be evaluated for coinfections, other TBDs (tick-borne disease). Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
There are a couple other good labs for certain tests: Fry; Clognen; Focus. Your LLMD will know. Some say MDL does good work (but I don't know if they test all the bands).
========================
VERY important to read - check this according to your test results:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
posted
My god the Dr's are seriously still this clueless even in NY. Baffling and scary! I don't have the NY LLMD's info I'm assuming someone has sent it...
-------------------- If you keep doing nothing...nothing changes!
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I think in the end you will pay more to go to a doctor covered by your insurance when you factor in that you may get sicker and be unable to work, that you will lose a lot of time in treatment, and that in the end you will most likely go to an LLMD anyway. Regular doctors rarely are convinced to treat, and when they do, they aren't specialists, so don't know all the little intricacies of treating Lyme - coinfections, fungal issues, parasites, etc.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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adamm
Unregistered
posted
Your doc's completely clueless! I'll send you a PM with info.
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I was sure that's what I was going to hear. I'm just very scared of the cost involved, and missed time at work (looks like I'll have to travel pretty far to get to a LLMD)
I just want to add .. when I asked the question to my family doctor "what are Bartonella, Babesia, Borrelia... was I tested for them? (Can/should I be?)" my doctor responded with questions like:
- Were you in Czechoslovakia lately? - Do you work on a farm shearing lamb fur? and other silly questions that made it seem like it was impossible to have any of those infections.
He then said, "it would be pointless to test you for those things."
That, and the fact hes waiting for a positive Lyme test before he begins Abx ... makes it clear he does not know enough to treat me.
P.S. My ankles are starting to hurt more and more the last two weeks. Right in the front part of the leg above the ankle. And if i twist my ankles, they crack like nuts again and again.I cannot recall any injury to that area in the last 5 years or more. Sounds like I have lyme.. me thinks.
I will definitely have to bite teh bullet and see an LLMD.
thank you for the advice
Posts: 9 | From Long Island, NY | Registered: Nov 2008
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posted
If i only had a dollar every time i read a story like yours iwould be a rich man and i would ahve had to pay myslef a dollar to boot.
Listen to the advice you got here...it is on the money.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You're in Long Island? You don't have to travel far. I flew from Ohio to NY to see my LLMD!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Oh, smartfest, I am so sorry you are going through this.
Unfortunately most of us have experienced some version of your situation ourselves.
I am with everyone else. Go to a LLMD. I would call right away. It can take a few months to get an appointment.
Even though you will probably have to pay, as insurance is not usually helpful to us with Lyme and con-infections, it is your life.
Can you ask your parents to help with your medical expenses? In my case, my LLMD required a prepayment when I made my first appointment. That actually was helpful to me. That way I didn't have to pay for everything all at once. He also takes credit cards.
Lyme will not go away on its own.
Of course, I really can't say for sure if you have Lyme, but you need to know. Only a LLMD can diagnosis you.
Good luck to you.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
Shearing lamb fur? Is he thinking of anthrax? What ignorance.
If you have a PPO instead of HMO, you can submit the LLMD's bill to insurance, and they should pay a percentage of the cost.
Posts: 311 | From CA | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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I was your age, exactly, when I first knew something was terribly wrong. I was decades before I was even able to get the tests. Still, no LLMD in my state.
Whatever it takes, drop the dumbo docs and seek out expert care.
This is your life. Even if you have to take a year or more off - it might help you have a chance at a life.
My career was a disaster, never being able to keep a good job although I tired so very hard - and my failed marriage was partly due to this illness maze. I've not been able to work since '93 because of denied treatment. That's a shame.
Get expert care. Accept nothing less. And follow the self-care instructions precisely. If you have any problems with treatment, there are always other ways to work with that, especially with good supplements. Many of the LLMDs incorporate information from the books by Zhang and Buhner.
Know that part of the reason some of us are so emphatic is that we wish we could go back in time and do it right from the beginning. Your success might make our missteps sting less.
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