posted
I had the EM rash a couple of weeks ago and started Doxy (100 mg twice a day) this week. Also had a blood test done.
Doctor's office called late Friday to say test was negative. I said I had the EM rash and I thought that was definitive. She repeated the test was negative. I said I understood the test to be unreliable, and that since I had the EM rash, I had Lyme. She said the test says you don't have it. I said thanks and hung up. Figured I would call the doctor after I did some research.
The only symptoms I have, other than the rash, are arthritic pain in legs at night, a short, sharp headache that flashes through my head (back to front) a few times a day, and tightness in my chest that occurs a couple of times a day (not painful).
So my questions:
1) I have read that the antibodies don't appear for 3-6 weeks after tick bite. Should I retake the test after a couple of weeks?
2) Does the EM rash conclusively indicate Lyme?
3) How reliable is the blood test (ELISA I believe)?
4) Should I just continue the Doxy for 30 days and see if symptoms go away? I believe this is accepted treatment for early localized Lyme.
Thanks Rich
Posts: 11 | From va | Registered: Mar 2008
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posted
1) I have read that the antibodies don't appear for 3-6 weeks after tick bite. Should I retake the test after a couple of weeks? Yes, I would take it again....but I personally would get a Western Blot thru Igenex Lab.
2) Does the EM rash conclusively indicate Lyme? Absolutely!!!!
3) How reliable is the blood test (ELISA I believe)? It's pathetic!!!
4) Should I just continue the Doxy for 30 days and see if symptoms go away? I believe this is accepted treatment for early localized Lyme.
Definitely continue or you will be risking your health bigtime.
There's really no such thing as "early localized" Lyme. It can go systemic within hours of a tick bite.
What is your dosage of doxy?? Most drs will not give a high enough dosage to knock it out early.
MOST doctors KNOW that it's too early for you to have formed antibodies. Pretty shocking that your dr doesn't know this.
posted
I should have been a little clearer in original post. My doctor is not a LLMD. I will see an LLMD if necessary if the initial treatment with Doxy isn't successful within 30 days.
My treatment is 100 mg doxy twice a day. I have found several references (including Dr. Burrascano) to 100 mg twice a day as proper treatment, with the caveat that higher doses up to 600 mg per day may be needed.
Question: How does the doctor determine the correct dosage?
Thanks Rich
Posts: 11 | From va | Registered: Mar 2008
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daise
Unregistered
posted
Hi Moonriver,
You're smart to pursue information.
The ELISA test you got (The Lyme titers test) was taken too soon. Yes, your body would not have made antibodies yet.
But actually, the ELISA should not be taken at all, because it's badly not reliable. Don't retake it. Even in early Lyme, Lyme is a clinical diagnosis.
Yes, an EM rash is diagnostic for Lyme. Did your doc see the rash? Did you get a picture of it?
There is no test that can possibly say you do not have Lyme disease.
Treatment for early Lyme is not 30 days, it's 6 weeks of doxycycline (amoxicillin for kids.)
I suggest you bring your doctor a copy of information from ILADS: www.ilads.org. On left menu, click on "Basic Information." Print that out.
Please see the following questions in the print-out: 4) Em rashes 6) The ELISA 12) 30 days is not enough. 14) See the last sentence in that paragraph.
The western blot test is not needed IF YOU GET A TOTAL OF 6 WEEKS OF DOXY.
That's successful in nearly everyone, but after 6 weeks of doxy, if you still have concerns, come back!
Where does it say, on ILADS or LDA letterhead, that 6 weeks of doxy is needed and the dosage, so Moonriver can show it to his doctor?
LDA's website is under construction for the information. At the ILADS site, I couldn't open either of the treatment guidelines. (My computer isn't great.)
I have a print-out of Dr. B's guidelines, yet I'm missing pages 1-3, where the info probably is.
HELP!
He needs to prove it to his doctor.
By the way, Rich, don't see an infectious disease doctor because they, as a group, do not take Lyme seriously.
Ditto to what Daise said about infectious disease doctors. "Don't go there."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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daise
Unregistered
posted
Click on Lymetoo's 2nd post, the 2nd url in the post.
Look under Treatment Categories--"early localized" and print this out: this is what to show the doctor.
However, print all of it up to that point, so the ILADS letterhead is at the top, in order to verify it's worth.
Show your doc this: ________________
EARLY LOCALIZED -- Single erythema migrans with no constitutional symptoms:
Adults: oral therapy for 6 weeks. Pregnancy: 1st and 2nd trimesters: IV X 21 days then oral X 6 weeks 3rd trimester: Oral therapy X 6 weeks. Any trimester -- test for Babesia, Bartonella, and Ehrlichia Children: oral therapy for 6 weeks.
___________
However, you DO HAVE arthritis, shooting pains in your head and tightness across the chest: above it says, "with no constitutional symptoms.")
Possibly you got the tick before, who knows when--months? Years? But it wasn't until now that you showed a bull's-eye rash. That can happen.
This is very important to know. In my case I got a huge bull's-eye. Nine years later signs and symptoms suddenly appeared.
posted
I believe what I posted is Dr. B's guideline for treatment - 200-600 mg/day doxy. "Evidence-based guidelines for the management of Lyme disease (ILADS) says treatment of 300-400 mg/day doxy.
What I am wondering is how is the dose determined? Is there a blood test to determine proper dosage?
No picture of rash. It was on the back of my arm so I didn't notice it right away. I just put an ointment on it and covered with a band-aid. After several days it went away.
Since my symptoms seems very mild, I'm wondering if this might be STARI and not Lyme. I guess if the Doxy kills it, it probably doesn't matter which it is.
Rich
Posts: 11 | From va | Registered: Mar 2008
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posted
To make this a little more complicated, I have suffered from fatigue for over 30 years. Like many here, I visited many doctors and had many tests with no success. Every 5 years or so I seem to drop to a new low level and again try a new doctor (with the same lack of success).
Over the years, in addition to the fatigue, I have gained weight, suffered from headaches and arthritic type pain in my joints, had back problems, haven't had a solid nights sleep in 10+ years (can only sleep 2 hours and then wake up - seems like I can't get into REM sleep), get periods where I feel very unsocial, brain fog, poor memory, etc. I know many here have similar ailments.
The only thing that gives me any relief is a strict low-carb diet. It makes my pain tolerable and does give me some boost in energy. But even exercise and a low-carb diet won't take the weight off. Testosterone and thyroid levels are slightly low, but doctors don't believe treatment is necessary.
So, I am trying to identify new symptoms since I noticed the rash. I also restarted a strict low-carb diet the day before I started treatment, so I feel better than I did a week ago. Makes it hard to determine what (if any) symptoms are new and related to Lyme.
Now for anyone that read this far, Is there a possibility that my symptoms indicate I have had Lyme disease for years? If yes, what test do I need for that?
Thanks everyone. I feel better knowing you all are out there and willing to help.
Rich
Posts: 11 | From va | Registered: Mar 2008
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posted
""Is there a possibility that my symptoms indicate I have had Lyme disease for years?""
YES!! Many people have gone undx'd or misdx'd. I was bitten 20 yrs ago and had all kinds of things go wrong health wise, but was never tested for Lyme.8 yrs ago, I was dx'd with Fibro. I got another bite 2 yrs ago and got the Western Blot test, positive with many bands.
Part of the dx is clinical.You will need a good dr for treatment. Keep reading here and asking questions.
-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Moonriver,
No witnessed rash + no photo = you are making it up, as far as the duck is concerned. I'm surprised you got any doxy at all.
I can't believe any duck doesn't know it's too early for antibodies to have formed. DUH. Actually, I'm not surprised at all.
What you need is to be tested by IGeneX.
No. What you really need is an appointment with an LLMD. You could have lyme plus who knows what other coinfections. The chances of a duck knowing about those - considering his high regard for an ELISA -- are mighty slim!
Please find an LLMD. They could at least reliably rule out lyme so that you could move on in your search for a true diagnosis if that's not your problem (and no, lyme doctors do not diagnose everyone with lyme as as often misreported). However, their clinical diagnoses are usually spot-on accurate!!
Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Your symptoms could indicate you have had it for years. I'd stay on the doxy and get to an LLMD asap! An LLMD can help you sort it all out.
You sound a lot like many of us who have lived with a certain level of pain, fatigue, etc. through the years but whose doctors can find nothing wrong.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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daise
Unregistered
posted
Hi Rich,
Boy am I glad you contacted us.
30 years ill must have been hard for you. Many here can relate to that.
OK. We've gone from your more recent rash ... to possibly chronic Lyme disease. On one hand we can't say you have it. On the other ... we are very concerned.
Very concerned.
You can get an EM rash years later or even during treatment.
There are many who've suffered from Lyme for decades, then got diagnosed for Lyme and commonly co-infections like bartonella (bart) or babesia (babesiosis, babs) and others--you mentioned STARI.
Most with Lyme do not know they actually have chronic Lyme disease. That's millions of people.
I say, continue taking doxy. Get yourself an LLMD who is also an ILADS physician. You can do that in two ways and I suggest both, and then you can compare notes.
1.) Contact a support group in your area. At the top of this page click "Support Groups" and chose your state. Local group people can open doors for you.
For example, ask them, which LLMD's take insurance? (Many do not.)
I suggest you get a nurse case manager with your insurance company, also called a care coordinator. They're on your side, that's their job. With an LLMD's name (that you can get in to fast) request insurance pay for the visits and say you must have a Lyme test and be properly assessed.
2.) On this website is a forum for finding doctors. Post what you need. We don't put doctors names on the Internet, in order to protect them, other than "Dr. A" and then only when you really need to.
They're our hero docs! Some state boards threaten their license to practice.
It may take a good while to get in to see an LLMD. Maybe not.
There are problems with testing. Don't let any duck do any (more) ELISA tests (Lyme titers test) as it's bogus and used by some insurance companies to deny treatment.
The western blot (sent to IgeneX in Palo Alto, CA) has been the gold standard, even though most with Lyme are negative. You can go to their website and order a kit. (Just type a search with their name) or get it through your LLMD.
Fry labs in Arizona claims to have a better test. I don't know if they do or not, but people are saying good things. Search Fry Labs on the Internet.
The CD57 is a SCREENER for Lyme and it tests how bad your immune system has been worn down. It is specific for Lyme. YOur blood is sent to LabCorp Lab in Dallas, TX.
For example, I tested negative for Lyme by three western blots. But I was positive by a CD57 test and that is the only reason I got treatment paid for.
Over a year later I still tested negative for Lyme. Also negative for bart and babs. I am in on-going treatment for Lyme (thank God!) now I'm also being treated for bart and I start babs treatment next month.
This is why Lyme disease is always a clinical dagnosis. An LLMD who is also an ILADS doctor can properly assess you.
Your testosterone and thyroid: It is typical for ducks not to take thyroid problems seriously. Nor testosterone problems. That's because most conventional doctors are ducks. Quack Whack-quack, quaaaaack. Quack.
I suggest you get copies of your testosterone and thyroid tests and then let us know the lab results or else send me a private message. (At the top of this post is an envelope icon--that's where you PM me.)
Lyme often attacks the thyroid. When it does, you need thyroid hormone (a bioidentical replacement) in order to heal from Lyme or any serious illness.
Thyroid hormone affects every cell from the top of your head clear down to your big, right toe.
Please keep in mind that with suspect thyroid and testosterone levels that also signals you'd need a test of cortisol levels at 4 times during one day. This must be done by a saliva test. It's something you can do on your own with a GOOD, EXPERIENCED alternative doc, but an LLMD can order that test, as well.
Lymeland is information overload! But that's the way it is.
Keep coming back and posting your questions. Also, you can search (top of any page,) by typing in a subject.
You also get to moan and groan here.
Especially important is to copy stuff from ILADS: www.ilads.org, left menu, click "Treatment Guidelines" and then print Dr. Burrascano's 33 pages of hints for 2005, plus print the ILADS guidelines, above it.
Danise Lang's book fortified me. It may be at your library: Coping With Lyme Disease. It's also by Dr. Liegner.
And a new book, It's All In Your Head, by PJ Langhoff. It's part of a three book set. Book 3 is not yet printed.
Books 1 and 2--especially book 2, has stories written by the patients themselves and it's very telling. It shows the diversity of signs and symptoms, and years or decades of physical and emotional suffering, misdiagnosis, family troubles and so forth.
posted
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
The following signs/symptoms may be present in those infected with Babesiosis: Fatigue Arthralgias Myalgia Drenching sweats Headaches Emotional lability Depression Dark urine Splenomegaly Dizziness Nausea and vomiting Cough Dyspnea Fever Chills Hepatosplenomegaly Jaundice Malaise Shortness of breath Bleeding tendencies, bruising Thrombocytopenia Hemoglobinuria Hyperesthesia Pulmonary edema Encephalopathy Low to normal range leukocyte counts Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection. An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
BRAIN: Encephalopathy may occur 1-6 weeks after the initial infection and is fairly common in patients with Bartonella. Note: Approximately 50 percent of patients who develop Encephalopathy can be affected by seizures (from focal to generalized, and from brief and self-limited to status epilepticus). Headaches, Cognitive Dysfunction, and CNS Lesions may be evident.
RASH AND LYMPHADENITIS: Erythematous papules (red splotches or slightly raised red spots) may develop. Such papules occasionally occur on the lower limbs but are more common on the upper limbs, the head, and neck. The papules may appear on the skin or mucous membranes. Bartonella may also cause subcutaneous nodules, with some bone involvement possible. The nodules may show some hyperpigmentation, be tender, fester, and/or be enlarged or swollen, but not always.
EYES: Conjunctivitis, Bartonella Neuroretinitis, Loss of Vision, Flame Shaped Hemorrhages, Branch Retinal Artery Occlusion with Vision Loss, Cotton Wool Exudates, Parinaud's Oculoglandular Syndrome, and Papilledema. BONES AND MUSCLES: Osteomyelitis, Myositis, Osteolytic Lesions (softening of bone), Myelitis, Radiculitis, Transverse Myelitis, Arthritis, Chronic Demyelinating Polyneuropathy.
HEART: Endocarditis, Cardiomegaly. Possible lab findings: The following may show up during standard testing: Thrombocytopenia, pancytopenia, anemia, elevated serum alkaline phosphatase level, elevated bilirubin, abnormal liver enzymes. X-ray of the bone may show areas of lysis or poorly-defined areas of cortical destruction with periosteal reaction. Cardiomegaly may show up on a chest X-Ray.
Biopsies of lymph nodes reveal pathology often indistinguishable from sarcoidosis. Reports of biopsies strongly suggestive of lymphoma do occur. Tests occasionally show an enlarged liver with multiple hypodense areas scattered throughout the parenchyma.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Oh Moonnriver,
I could just here the tone of that nurse when she replied to your concern. What is the matter with these ignorant medical personnel.
They have all the answers, yet know nothing. If their butt were on the line they'd be singing a different tune. I've been herein' it since my son was a few months old.
I had such horrific words said to me by a nurse at the office of my chidren's Lyme doc. I know she's a knew nurse because the other staff is so precious. I had caught a buzz and called back after hours leaving a message about desiring to always pay for consultations, and by the way, "your new nurse is a hoot". Needless to say, I'm glad my phone died before I could blurb it all out.
Despite ignorance, toxic personalities do not belong in this Lyme business, it's hard enough.
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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bettyg
Unregistered
posted
moon, did you receive last week my lengthy newbie package? if yes, i hope you copied it to your word processing software.
now use EDIT, FIND, and type in IGENEX and hit enter until you get a huge description telling all about western blot igm and igg testings, and other SPECIFIC DETAILS to do.
fry lab info is in there too in detail; good luck.
if you didn't get it, please send me a private message, 2 people standing together icon, and ask for it; i'll send it to you ok.
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