posted
I found a tick on my back attached a week ago. I have no idea how long it had been there or where I picked it up from. I started to get the rash that follows lyme tick bite and this morning woke to chills and fever, aches and joint pain. My neck was stiff and I was having a hard time taking a deep breath. I went to see my local doctor and she said we never get lyme here in SC but I will give you a does of antibiotics anyway. I thought to myself well I obviously have something because my heart was racing and my hands were shaking. I was surprised that she knew so little about Lyme disease and that she was not at all concerned about my symptoms. I have been given a 10 supply of Doxycycline, but I am still wondering if that is enough. I have been reading up on Lyme Disease and it's effects and I would rather catch this as early if possible.
Is there something else I should be doing or taking? What advice would all you veteran Lyme patients give me?
Thanks so much. I have been marveling at people's tenacity and strength on this web site. God bless you all.
Posts: 8 | From Lexington, SC | Registered: Apr 2009
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adamm
Unregistered
posted
Emergency --that rash means that, without a doubt, you have Lyme. Unfortunately, the mainstream medical community's been lied to about the disease since its emergence, so 99.9% of the docs out there have no idea how to treat or diagnose it. The reality is that Borrelia is one of the toughest pathogens known to man and that even the best tests for it will miss around 30% of cases.
You need to do whatever it takes to get enough doxycycline so you can treat with 400mg/ day for 3 months and set up an appointment with a Lyme-literate physician; the alternative is developing an incurable brain infection. Exploit free clinics, track down friends with antibiotics, hit up online pharmacies--go to the gates of hell and back if you need to. Just act now, as the sore neck means you've already developed nervous system involvement.
I'm incredibly sorry to have to tell you all this. REally--nobody should have to be in this position. I'll PM you the info of the docs in my region, one of whom will probably be able to see you quite soon. For more info on what you're up against and why you haven't been able to get the care you need, I'd check out
posted
Is Doxycycline the only antibiotic that works? Should I get something stronger?
Posts: 8 | From Lexington, SC | Registered: Apr 2009
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adamm
Unregistered
posted
Well, you'll also want to treat for the other common TBI's, like Babesia and Bartonella, which require different drugs, but you'll probably need to get to an LLMD before you can do that.
Re: whether or not doxy 400mg/day is the bet choice for the BOrrelia: hard to say. If you do a youtube search for Randy Sykes, you'll find some videos in which it's stated that, if you can, you go to IV Rocephin right away. Not sure how many Lyme-literate doctors use that for early infection, though. All I know is that 200 mg doxy/day is doomed to fail.
Hopefully others will chime in as well.
Have you read Burrascano's guidelines? They should be at the top of the forum.
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I'm so sorry that you have to deal with this. Fortunately, you're starting early, you are asking the right questions, and you are educating yourself about Lyme. You'll find a wealth of information here.
Adam has given you some good info and links. Another, if you haven't come across it yet, is Dr. B's treatment guidelines. They are considered the gold standard by many. Here is a link to it: http://tinyurl.com/a7cogr
According to a quick check of Yahoo maps, you are about an hour and a half away from one of the finest LLMDs in the country. Please check your private messages for more info.
One last thing: Do not let any doctor give you steroids. They can do great damage in the presence of Lyme.
I'm sure others will be by soon with more info for you.
All the best, Viva
Posts: 532 | From southeast US | Registered: Oct 2005
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Sarah, Any "1-dose" doc does NOT have ANY true understanding of Lyme disease, & is likely blindly following IDSA recommends... for a "high risk bite", that is.
But in THIS case, if you have a typical Lyme rash (image-google 'erythema migrans' rash & compare) and are having symptoms like you described- & your doc was Aware of this- she was comPLETEly remiss in her duties in Rx'ing a single dose... of Any abx!
YOU NEED TO BE ON "DOXY" FOR AT-LEAST 4 WEEKS BEYOND RESOLUTION OF ANY RASH OR SYMPTOMS. PERIOD. If you are a small woman, 100mg twice a day might be enough, but a higher dose, esp if you are big- & esp lanky- is recommended. "Doxy" tends to concentrate in the skin. The more skin "area" you have, the more abx is generally req'd. If you are allergic to 'cyclines, amoxicillun is usually the 2nd choice.
That 10-day 'script' is unusual, in that even IDSA-following MDs generally prescribe 3 weeks of doxy. What decade is She from??!
The biggest tip-off that this "doctor" is a Duck, when it comes to borrelia Burgdorferi anyway, is her statement, "We never get Lyme here in South Carolina." I mean... H--U--H?? Cripes, even the CDC (in GA) says some coastal areas/counties of SC are now at endemic levels for Lyme disease!! Who the %#@& is she fooling?
Get yourself to another doc & describe the bite, rash & all symptoms. If he/she can See the rash, you should have no problem getting on a months supply... I'd THINK!
Two things: 1) STAY OUT OF THE SUN WHILE YOU ARE ON ANY 'CYCLINE', incl doxycycline. 2) For any stomach upset after dosing, try ginger tea or a good-Q, dark, diet gingerale.
(And avoid all alcohol & sweets for now, especially ice cream. Just a hint. Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Sarah,
so sorry to hear of the situation.
First, you said your heart is racing and that you have shaking hands. What might help that is to take some good magnesium supplement. See the link to Burrascano's supplement suggestions.
I, too, live in a state where MDs say there "is no lyme." But it seems to happen when they aren't looking!
It may be too soon for tests, however, with the rash, you don't need a test for lyme but you will need to be assessed for coinfections.
Above posts offer good advice. Sorry if I repeat what they say but my short term memory is, well, short. And, if you see a bunch of say "no steroids" then that helps to confirm it in case you are told by a regular MD to take any. And so many don't know that any steroids can make lyme much worse.
The articles and links below explain WHY you need a special kind of doctor and you can see that the ILADS treatment guidelines AND Burranscano's use a COMBINATION and ROTATION of medicines.
Take photos of that rash in various stages. Put a clean coin nearby for size reference and try to get your face in one shot if you can.
--
I do hope you can see a good ILADS-educated LLMD ASAP. Be sure to tell them of your rash when you call about an appointment. Also ask if you can take some ALLICIN capsules when the doxycycline runs out. That may offer you some protection until you can get in to see the LLMD.
Also . . . no steroids (even creams or localized shots . . . no not let a doctor talk you into doing a lumbar puncture (spinal tap) as they are NOT a good test for lyme.
You might want to print out your replies for reference as all this is alot to take in during one reading.
Best of luck to you. With prompt treatment, you have a chance to actually do very well. We all hope so.
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.
You should also be evaluated for coinfections. 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:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
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.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
posted
Four weeks of 200mg doxycycline definitely does not do the trick. It will treat your acute infection, but not prevent the next stage, in which Lyme reemerges at some later point months or years later. For me, it was 12 months later.
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
There are many medical references at Lymeinfo about the persistence of the bacteria after what's considered the "proper" treatment. see the persistence file.
You may also be interested in the Symptoms file. It's an extensive list of medical references to document how Lyme can affect the entire body.
I would advise you to follow Dr. Burrascano's treatment guidelines, which can be found at the ILADS website--International Lyme and Associated Diseases Society. There are two sets of treatment guidelines for this disease. You can choose how you wish to be treated. You have the rash; you have the disease. You must be treated.
Standard of care treatment for this disease doesn't always eradicate the organism, but may merely supresses the growth of the bacteria...allowing it to activate later into an infection that can affect your entire body.
And be aware, the rash eventually fades. This does NOT mean that the organism has died and that you are over this disease. You do not get immune to contracting this disease. You can be reinfected multiple times.
Take photos of your rash at least twice a day. Include a ruler and include your face in a few views. Also take some close ups of the rash with the ruler in the view. You won't get much of an opportunity for photographs. They are a powerful weapon to have in your medical record.
A rash that meets the CDC definition for Lyme disease is 5 cm. This size rash should automatically earn you a clinical diagnosis of Lyme disease. I say should because many physicians are not aware of this fact. They need to read the Lyme case report form.
I'd go to as many doctors as needed until you find one who is aware of this. You need the diagnosis while you have the rash. A clinical diagnosis of Lyme disease is invaluable for treatment and for insurance purposes!
Your physician may circle the rash in ink, then examine it later to see if it's enlarging. Enlarging is the hallmark of this rash. It's frequently misdiagnosed as ringworm. The Lyme rash can be any shape (oval or round)and have many different appearances, such as solid, or with a ring. Skin tone affects the appearance of the rash. See Dr. B's guidelines for a list of the many ways this rash may appear. Also see the LDA (Lyme Disease Association) for the collection of photos of different rashes associated with Lyme and other diseases transmitted by ticks. Learn about coinfections.
My rash photos supported my CDC positive test results and allowed me to be a part of the official Lyme case count. Unfortunately someone goofed up and didn't contact me until after the deadine for ammending the count had passed. I will always wonder if that was done on purpose. That's one way to keep the Lyme case counts down!
Educate yourself about this disease. There is an information war raging right now. You are the only advocate for your health.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
You must do two things right away (I have not read the rest of the posts, so this may be repeating what others said):
* Be sure to take enough doxy -- at least 400mg/day. That is 200mg in the morning after breakfast, and 200mg after dinner. Take with alot of food to avoid nausea. Be very careful to stay out of the sun!!!
Or, high-dose amoxy might be a substitute -- your lyme literate doctor can switch them.
* You need an appointment with the best lyme literate doctor you can get one with to be evaluated for other tick-borne diseases. For example, I got babesia as well as lyme from a tick bite.
Go to the Seeking a Doctor section and get recommendations for an llmd.
Read as much as you can, and stay well! You caught this early on, so you have a great chance to fight it. Best wishes.
PS: do not be surprised by your doctor's ignorance. Unbelievably for the largest vector borne disease in the US, few doctors know much or anything about lyme.
That is why it is absolutely imperative you go see a lyme literate doctor. For me and countless others, seeing a lyme literate doctor has made the difference between total disability and health.
Posts: 2557 | From home | Registered: Aug 2006
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Sarah, This is an emergency situation, so treat it as such. Get proper care immediately. Beware that physicians often do not treat this infection aggressively enough in the acute early stages. Consequently, as you may be aware, people often go on to develop chronic symptoms.
The medical community at present does not believe that patients suffering from Lyme disease have an ongoing persistent infection, but I can provide well over one hundred studies demonstrating that the bacterium that causes this infection does persist in-spite of 10 days, 14, 21 and 28 days of antibiotic therapy.
Not only is that an issue, but physicians are often so focused on the Lyme Disease rash (if they diagnose it at all) -- that if you have the rash, most physicians just assume Lyme Disease and don't test for co-infections, which are other infectious diseases that ticks carry. Some of these infections are "not" resolved with antibiotics used for Lyme Disease. As you can see, that would be quite upsetting to have such an important thing overlooked.
You must see a specialist in tick-born infections who treats aggressively, not just 2-4 weeks of doxycycline at 200mg. You'll need an evaluation to ensure you are treated appropriately for Lyme Disease, as well as perhaps any other infectious disease that "might" be transmitted by the same tick that bit you.
E-mail me if you need a list of people to see. I apologize in advance for your circumstance, -- the physicians in your area "might" not take insurance because there aren't a lot of specialist in your area, and the few that are don't receive support from the insurance companies (they won't file contracts, because they're under the impression that Lyme Disease is easily treated, and difficult to catch -- when, as I stated, the science demonstrates otherwise. If the physician has an insurance contract, and the insurance company finds out the doctor is treating Lyme Disease longer than a strict time-period, they eventually report the physician to the state medical boards. It's a widespread controversial issue right now, and sadly you'll now have to navigate through it quickly to ensure you get treatment."
It's important that when you call the offices for the doctor's we suggest, that you tell them you were just bitten, and you experienced all these acute symptoms, but were given a short course and small dose of Doxycycline. Make sure you tell them this when you call the office of whoever you see for an LLMD -- this way they can slip you in "now" to get proper care instead of putting you on the mile long waiting list.
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