posted
I just found a tick on the back of my head yesterday that was quite large. What do I do now?
-------------------- Debbie Posts: 7 | From Dunellen, NJ | Registered: May 2009
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adamm
Unregistered
posted
Whatever it takes to get enough doxycylcline so that you can treat with 400 mg/day for a month. That said, corrupt public health bigwigs have been lying to docotrs about the illness since it becamce know to the public in the 70's, so your PCP probably won't be knowledgable enough to help you out.
You can print off some literature from the sites below and attempt to educate him/her, but in the end, you'll probably have to resort to herbal options, free clinics, and friends with antibiotics. Hopefully you didn't get anything from the tick, but, as about half of them are infected and the organisms that they carry are generally brain-damaging, you can't afford to do nothing. So you need get prophylactic treatment, and, if you experience any symptoms at all, make an appointment with one of about 50 doctors known to us to be lyme-literate (these are more often than not associated with a group known as ILADS) And you need to remember: there is no test that can rule out any of these diseases.
posted
Thanks, I have been doing a lot of reading on line and this is pretty scary. e making an I did some searches and found a couple doctors that are considered Lyme literate and will be making an appointment. I am going on vacation for 2 weeks this in 2 days and I'm not sure if this is something that can wait until I get back or not.
-------------------- Debbie Posts: 7 | From Dunellen, NJ | Registered: May 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Sorry, NO. This cannot wait until you come back from vacation. This is an emergency. The quality of your life - everything about your life - rests on prompt action (if that tick was infected).
However, if you get doxycycline, you must stay out of the sun or wear sun protection in the way of loose cotton clothing, etc.
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I am sorry to post so much here. You might just skip to the Support Groups to call someone in your area and ask about which doctors or clinics may be okay for you today.
If you read a little from below it will help explain the political football that lyme has become and prepare you.
Hopefully, the tick did not have lyme, but there are other infections to consider, too. I hope this set of links helps.
Remember, most of this is written for those who did not get treatment early enough - or enough treatment. If you have some sort of tick-borne infection (TBD), the sooner you get treatment, the better your chance of this being just a blip on the screen.
Good luck.
====================
These first 3 posts may not mean much but, after you read a bit, you'll see that getting proper diagnosis and treatment has been very difficult for lyme and TBD (tick-borne disease) patients. You might just want to glance a the top three treads to get an idea of what is being done to help change that.
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
The tick was fully removed with a piece of my scalp. It is very red and tender to the touch.
-------------------- Debbie Posts: 7 | From Dunellen, NJ | Registered: May 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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That's the same way my tick was back in '77. I did not know then about lyme. I became ill weeks later but not diagnosed with lyme, babesia, and human monocytic ehrlichia until '97.
Decades of being ill and no help. I don't want that to happen to you.
---------
I assume you saved the tick? You could have that tested and, if postive, that tells you a lot. However, if negative, you could still have lyme and other infections.
They would usually just test for lyme, not some of the other infections, though.
Please call someone with your local lyme support group - but also please - now - go see a doctor at one of the walk-in clinics. Each hour you wait can make a difference. Again, if infection is there, the sooner treated, the better your chances.
I would still have the doctor look with magnification. Any trace of the tick might cause problems. In one eastern European country, they excise the area of a small pencil eraser from around a tick bite just to be sure no parts are left in.
posted
Staing out of the Sun is going to be a little difficult since I'm going to 2 NASCAR races in a row but I will do my best and try to keep covered up. I am going to go to my local Walk-In Medical facility today and see if I can't get them to give me a script and check out the bite site since I can't see the back of my head.
-------------------- Debbie Posts: 7 | From Dunellen, NJ | Registered: May 2009
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posted
Yes, I have the tick and will send it to be tested tomorrow.
Thanks for all your help.
-------------------- Debbie Posts: 7 | From Dunellen, NJ | Registered: May 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Good. Call Igenex Labs and ask which lab to send the tick to - you want to be sure it goes to a good place.
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About the NASCAR races. Depending upon how close you will be to the noise . . .
Be sure to take good earplugs AND ear muffs. Antibiotics lower the threshold at which hearing damage can occur.
And, if you are given minocycline instead of doxycycline, you will be even more susceptible.
Liver support and other measures will help your ears (milk thistle, NAC, B-6)
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Many people have to shield themselves from sun. You can get some umbrellas that block certain rays, etc. but, still, be careful of "bounce-back" rays that can still burn.
And . . . avoiding alcohol is vital if you have lyme. Be sure to plan for good snacks all along the way. If you are on abx (antibiotics) you'll want food in your tummy.
You can read more about self-care for lyme patients in Burrancano's guidelines, I think that part is on page 27.
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
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." ===========
ILADS 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.
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posted
Betty, So sorry about my postings but I am totllay new at this.
I did go to the doctor's today and got a script for Doxycycline for 100mg twice a day for 14 days.
They also are doing blood tests.
Why is alcohol a no no? I drink every day and this would be a very difficult thing.
-------------------- Debbie Posts: 7 | From Dunellen, NJ | Registered: May 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Debbie,
Glad you got the medicine. It's a very lose dose but it should offer some protection if that tick was infected.
Be sure to avoid sun exposure, even through the car window. You might want to keep a cool cotton shirt in the car.
Do you know what kind of test they did? ELISA?
Do you know what lab they used?
A Western Blot is better but it is TOO EARLY to have a lyme test. It will show nothing and be a waste of money and also make it harder in the future if this may be lyme.
If fact, you might call Igenex in the morning and see if there is anyway a blood test now will be helpful.
Did they test for coinfections? (Still, it may be too early but I'm not sure about that.)
====
Regarding your question about alcohol:
There are many reasons why alcohol is so hard for lyme patients. One is that lyme really attacks the liver hard, partially because, lyme toxins are especially damaging to the liver and any alcohol makes it much easier for lyme to win.
If this is lyme, it can be a very serious infection that, if not treated properly, can change everything about your life. The lyme experts are clear that those who drink alcohol have much less chance of winning over this very powerful bacteria.
It may be a difficult thing but, if you can take excellent care of yourself now, you may have a good life ahead of you.
Even with the best care, lyme is a terribly tough infection to fight. Now, again, you may not have lyme, but you can't take the chance right now by overwhelming your liver when it needs to do its best work.
Lyme can also attack the nervous system. Alcohol does not help that and, in fact, put further strain on the brain cells that have been bathed in the toxins from lyme.
It can't be known for a while if you have become infected and it would be best to call a LLMD on Tuesday for reasons listed in post above. Be sure to tell them when you were bitten and how much medicine you have.
If you get off lucky this time, you will have at least learned a whole lot so that you will be prepared and able to prevent damage if this happens again.
If you do have lyme, the best you can do for your body and you have a chance at a better future.
Dr. Burrascano'sTreatment Guidelines (2008) - 37 pages
Excerpt from Page 27:
CERTAIN ABSOLUTE RULES MUST BE FOLLOWED IF LYME SYMPTOMS ARE TO BE PERMANENTLY CLEARED:
1. Not allowed to get behind in sleep, or become overtired.
2. No caffeine or other stimulants that may affect depth or duration of sleep, or reduce or eliminate naps.
3. Absolutely no alcohol!
4. No smoking at all.
5. Aggressive exercises are required and should be initiated as soon as possible.
6. Diet must contain generous quantities of high quality protein and be high in fiber and low in fat and carbohydrates- no simple carbohydrates are allowed. Instead, use those with low glycemic index.
7. Certain key nutritional supplements should be added.
8. COMPLIANCE!
================
from Page 31:
. . . note that exercise is not to be aerobic: "This T-cell depression is more pronounced after aerobics which is why aerobics are not allowed."
LYME DISEASE REHABILITATION
Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.
Although the scientific basis for the benefits of exercises is not known, there are several reasonable theories.
It is known that Bb will die if exposed to all but the tiniest oxygen concentrations. If an aggressive exercise program can increase tissue perfusion and oxygen levels, then this may play a role in what is being seen.
Also, during aggressive exercise, the core body temperature can rise above 102 degrees; it is known that B. burgdorferi is very heat sensitive. Perhaps it is the added tissue oxygenation, or higher body temperature, or the combination that weakens the Lyme Borrelia, and allows the antibiotics and our defenses to be more effective.
Regular exercise-related movements can help mobilize lymph and enhance circulation. In addition, there is now evidence that a carefully structured exercise program may benefit T-cell function: this function will depress for 12 to 24+ hours after exercise, but then rebound.
This T-cell depression is more pronounced after aerobics which is why aerobics are not allowed.
The goal is to exercise intermittently, with exercise days separated by days of total rest, including an effort to have plenty of quality sleep.
The trick is to time the exercise days to take advantage of these rebounds. For an example, begin with an exercise day followed by 3 to 5 rest days; as stamina improves, then fewer rest days will be needed in between workouts.
However, because T-cell functions do fall for at least one day after aggressive exercises, be sure to never exercise two days in a row.
Finally, an in intermittent exercise program, properly executed, may help to reset the HPA axis more towards normal.
On the following page is an exercise prescription that details these recommendations.
posted
Keebler, Thanks for the info. This site and everyone has been so helpfull.
I must say though that I have friends that who think I'm going a little over board with this.
I'm just trying to be proactive.
I have a friend who has a stint in his arm for antibiotics treatment and don't want to get to that point.
I will keep you posted and Thanks again for all the info.
-------------------- Debbie Posts: 7 | From Dunellen, NJ | Registered: May 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Debbie,
I'd not talk to your friends about this if their comments are troubling.
I guarantee if I were to describe my life now you would do anything you could to try to prevent that.
Lyme is a very serious matter and those who think you are going overboard would better serve your friendship to become informed.
I know this is hard and I'm pretty matter of fact with shouting the orders. I don't have energy for much else but trying to prevent the devastation that lyme can bring.
You are being smart and committed in taking the very best care of yourself as you can - whatever that takes.
All of us here would love to be able to go back to that point in time where we had different options.
I do hope this works out well but you won't know for a while so you have to approach this as best you can.
While I think you do need to see a LLMD ASAP, do you know anyone who has a rife machine? Can you ask your local support group?
Then as the LLMD if, perhaps, treating with rife early might make a big difference. As the rife is experimental, no doctor is allowed to bring it up. However, they can share what their patients may have told them.
I am sorry to toss so much out and I remember how overwhelmed I was about all this. But, at this point, you still have your health on your side. I hope it stays that way.
In your case, I'd repeat the protocol in about 5 days. And don't worry about getting the Borrelia-b. remedy - just use the other two remedies. Hopefully, you can find them both when you go on vacation. Just call around to some local health food stores.
Have fun at the Dover race. (I'm assuming that's the NASCAR track you're going to.)
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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bettyg
Unregistered
posted
debbie,
your post was fine!! sorry you misunderstood ...
i have a basic welcome letter to all who enter there and tell them also about the problem we severe neuros have of NOT being able to read long continuous text and run-on sentences with NO DOUBLE SPACING between paragraphs.
i'm sorry for what you thought i said; you've done well!! glad you're getting good advise.
KEEBLER'S our walking medical encyclopedia who works so hard on every newbie's questions to educate them. 5 star performance, wouldn't you say?
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
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