posted
I'm 21 years old and was diagnosed with Lymes when I was almost 6. I had the bulls eyes and was given 10 days of antibiotics. I have had chronic headaches my entire life and go through unbelievable amounts of advil, tylenol & motrin monthly. Also, I started fainting about a year ago and after a tilt table test was diagnosed with Vasovagal Syncope, which my doctor attributed to the lymes. I am now on a beta blocker for this and it seems to help. Last spring I developed a bulls eye like rash all over my body again and went to the hospital because I had a high fever and could not even walk. They told me I had ring worm and sent me away without doing any further testing. I did not think that this was ringworm and went to my dermatologist who said it was absolutely not, and sent me immediately for blood work to see if I was going to test positive for lymes. The test came back negative and after a while the rash began to fade. I have spoken with someone else who has lymes recently and said that everything that I have described sounds like lymes again, including that the rash could come back if it was never treated properly. My doctor had told me that it is not possible unless I got bit by another tick. I don't know anyone else my age who is so sick all of the time, and I'm wondering if it is possible that it is back, or with the 10 days of antibiotics that it never was treated enough. thanks---sara Posts: 11 | From NJ | Registered: Nov 2007
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Because you live in a highly endemic area ( NJ ) I would think that you may very well have a case of lyme.
The fact that you can not recall a tick bite does not mean that you have not been reinfected either. IMHO.
Seek out a LLMD and let them diagnose you.
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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posted
Is there any way that the lymes never left? would i have to be reinfected to get the rash again?
Posts: 11 | From NJ | Registered: Nov 2007
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
NJ is loaded with ticks and co-infections. You need to find a llmd and get tested for all the nasty infections these ticks carry.
Maybe someone from you area can pm you with a name of a llmd.
Feel better.
Posts: 1603 | From ny | Registered: Aug 2006
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
absolutely, it's possible the lyme never left. 10 days of antibiotics is not nearly enough to kill this stealth bacteria.
standard tests for lyme & coinfections are highly inaccurate, and false negatives abound. unfortunately, most doctors know NOTHING about these illnesses. please post in the 'seeking a doctor' section to find a lyme-literate MD near you.
best of luck, and welcome to the site! so glad you found us.
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
It is possible to get a lyme bullseye rash from a recurrence, and not from a new bite. I have seen this before.
It is also possible that you got a new bite that you didn't notice, and a rash broke out systemically.
It is very possible that 10 days of antibiotics did not clear up the infection when you were six.
Lyme and co-infections don't go away on their own without agressive teatment.
I had lyme 20 years and co-infections 30 years before diagnosis, with a variety of health problems, but I'm getting well now.
The way to tell the difference between ringworm and lyme is that ringworm almost always itches like crazy, and lyme bullseyes rarely ever itch at all.
Most local labs are not sensitive enough to give accurate results. They also often don't test the most indicative bands. People on this board put faith in a lab called Igenex in CA.
Even with a good lab, lyme can hide from the immune system, and tests can come back negative, so a negative test doesn't mean you don't have it.
I strongly suggest that you make an appointment with an LLMD lyme literate medical doctor, who can retest you, and also diagnose you based on clinical symptoms.
Most other doctors are working under guidlelines that are inadequate for treating lyme, and are not knowledgeable about the disease, due to a string of politics that I won't bore you with right now.
Go to the Seeking a doctor section of this forum, and post that you want to find an LLMD in your area.
You may have found the answer to your recurring health problems.
Good luck! Let us know how it goes!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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quote:Originally posted by sara ashley: Is there any way that the lymes never left? would i have to be reinfected to get the rash again?
1. ABSOLUTELY!!!! 2. NO [but if you want to appease the ducks, you could say you had been hiking and must have picked up another tick]
Please do some serious reading here so you will be armed with the CORRECT information. The biggest problem I see is with the test you were given.
This happens all the time. The current tests are pretty lousy at picking up the Lyme. You could also have various coinfections which are not allowing you to get well.
Please get a test kit from Igenex Lab... www.igenex.com Ask for #188 and 189.
10 days of abx won't "cure" much when it comes to Lyme disease. There is a HUGE possibility that it will come back sooner or later when a dosage like that is given.
You need at least 2 months of abx when first bitten to really get the spirochetes running, and even then it may not eradicate them.
[abx= antibiotics .. ducks = MD's who are not knowledgeable about Lyme]
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME TO LYMENET!*)!*) @*)@*)@*)@*)@*)@*)@*@@@!!
Sounds like you belong here.
Yes, it is very possible you have Lyme still. Sorry to read it but glad you are here.
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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tailz
Unregistered
posted
Sara, I did not get my Lyme and babesia from any tick. I got mine from mosquitos and fleas. I am so infuriated that they still are blaming this all on ticks when other bugs carry these diseases, including mosquitos, and who here doesn't get bitten by at least one mosquito every summer?
I had to look up vasovagal syncope, because I thought it meant fainting, but I wasn't sure:
I was looking at the triggers though - and apparently I have this, too. I almost passed out on at least 3 occasions in my late teens/early 20's - once while being trained in phlebotomy (drawing blood), another time while standing under long-tube fluorescent lights next to a bunch of computers at work, and a third time in a Circuit City Superstore. In fact, I lost consciousness that third time. The first time I did not collapse - I just could not see. At the time, everybody blamed it on a drop in blood sugar, stress, anxiety - the usual.
But the reason I gave you so much detail about my fainting spells is because I also have electrical sensitivities/microwave sickness, though I didn't realize this until recently, and I believe infections such as Lyme work along with these dangerous frequencies, essentially causing a weakened immune system and chronic infection.
I suspect that you could be living near a cell phone tower. I still get episodic near-fainting spells - usually when more of my neighbors are home. I also have a naturally high magnetic field in my current home, due to nearby power lines and a transformer close by.
posted
There are 72 towers within 7 miles. Thanks for the information, I will definitely look into it.
The more I read information the more I realize that all of the symptoms I have fit into Lymes. I never thought I could still have it.
It is really nice to have a place to talk to people that can relate. How does anyone deal with the headaches? Sometimes advil and those things don't even help.
thanks--sara
Posts: 11 | From NJ | Registered: Nov 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
SaraAshley
Welcome!
You have received some very good information here.
Let me be the first to tell you that Lyme symptoms can go into *remission* and reappear at another time.
I know, because in the last 15 years this has happened to me several times. Sometimes, I felt healthy and functional, others, totally debilitated.
Please get tested again by IGENEX. I really don't think that 10 days abx when you were six would have done much.
I have the headaches too. Nothing touches them except klonopin ( a seziure drug, also anti-anxiety ) and sleep. Sorry that I can't offer more.
Best of luck, Rhonda
Posts: 3975 | From usa | Registered: Aug 2007
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Sara--
10 days of meds will not even touch Lyme-
Now that you have had lyme many years - it is going to take a long time treatment to get better again--
Make sure to look into co infections that you get from the same tick bite- Babs and Bart are the Most common --
I have both Lyme and Babs for 18 yrs untreated-
Now after about 3 yrs of Good treatment - I feel 95% well most of the time --
The tests for most of these diseases are perty much Useless - especially when you have been sick for many yrs -
This is why Lyme and Babs are Diagnosed by symptoms --Not tests --
Hope this helps--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I know what it's like to have a headache every day. In high school, I had headaches every single day. Sometimes, along with the headaches, I'd have these sharp "ice pick" headaches. Of course, for me, that was about 6 or so years ago and during that time, I had no idea what the cause was.
Today, I believe I had lyme back then but didn't know it. Didn't know it for 6+ years if that's the case.
The headaches will get better with treatment. I've been on medicine now for at least five months and my headaches have gotten much better. More often than not, they aren't headaches I have but what feels like my head is "full".
PS - my name is Ashley, too!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I guess everyone has covered the most important stuff. I have pm'ed you in case you need NJ llmd info let me know. Keep reading and learning. It is the best way to start.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Ashley, so sorry you had to come looking for this site. Ring worm huh?
You're so young and have been ill for many years, but now you are going to be researching the truth about vector borne illnesses.
Tailz, I think that's another line that is fed to doctors & world about it being a tick borne illness, so everyone that gets a bug bite doesn't freak out like we do.
Tick, spider bite, mosquito, flea, whatever?
Ashley, maybe you could start with a lyme literate doc & a lab test from a lab that knows lyme antibodies when they see them.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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posted
I have just come across some of the pictures of my rash when I had it back this year. Is there anyway I can post it so maybe you all who are more familiar with it could tell me what you think?
Thank you so much everyone for the support and great information. I no longer feel like I am crazy for feeling sick all of the time. I appreciate all of the responses so much.
I'm not sure if I need to check with my primary care doctor and convince her to write me a referral to a Lyme specialist? I guess these are things that I will have to figure out this week. My doctor should say yes if I have to, as I have probably supported her practice more than any other patient by being sick so much.
Thanks so much again everyone.. and let me know what I can do with these pictures.
-sara
Posts: 11 | From NJ | Registered: Nov 2007
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posted
Sara, Don't count on your MD to give you a referral to a LLMD as they are not listed as specialists anyway. They are listed typically as Family Practice or GP's. Most insurances will let you change MD's or have a couple GP's.
I really can't tell you anything the others haven't already told you except hang in there and stay with it until you find an MD that knows about Lyme and read read read.
You cannot read too much here. I gained an education here and am so thankful for all the oldtimers here that helped me, when I figured out that what was wrong with my daughter was Lyme.
Keep the faith and you have found a good sounding board, information sorce and many good friends here.
Hugs,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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tailz
Unregistered
posted
Pam, I'm not so sure they're still calling it a tickborne disease to protect us from freaking out so much as they're doing this just to save the insurance companies some money, and perhaps keep the pharmaceutical companies going with their countless drugs that only treat symptoms.
If Lyme is as prevalent as we all think it is, both the insurance companies and pharmaceutical companies would go bankrupt in no time.
posted
I know I keep posting random questions, but is a symptom along with joint pain muscle pain? Like my back and shoulders hurt so bad to the point where they become numb and spasm, I've had cortisone shots and still no relief.
I am hoping as soon as I finally get to a doctor I will feel 21 again not 70.
sara
Posts: 11 | From NJ | Registered: Nov 2007
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posted
Yes that is another Lyme symptom. Hoping to be instantly better is unfortunately way too optimistic for this disease.
Posts: 526 | From NJ | Registered: May 2007
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quote:Originally posted by sara ashley: The more I read information the more I realize that all of the symptoms I have fit into Lyme. I never thought I could still have it.
Read my story below!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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tailz
Unregistered
posted
Sara, minocycline gave me the worst herx in my shoulders. I couldn't straighten my back the next morning after my first couple capsules.
I'm not sure which bug was being killed, but something was dying in my shoulder blades. Whatever it was came crashing through my tongue, turning it black.
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Way to scare a newbie away.
Sara Ashley...love your name.
Just wanted to add that after initial diagnosis, and six weeks of Doxy at 300 mg daily, my rash returned about two months later.
It was THE EXACT SAME RASH, EXACT SAME PLACE, and I was feeling achey again, with shoulder and neck pain, and tired. My Primary Care doc saw the rash, agreed it looked like the same thing/same place, but was adamant that a Lyme rash cannot recur.
It was January in Connecticut...I was not bitten again. My rash and symptoms returned simultaneously. In fact I had a scar where the bite was for at least a year.
I'd almost forgotten about this. It was kind of flukey...but it happened, is well documented...and even though my doc couldn't "think outside the box", the evidence was pretty clear!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
OMG
see, THIS is what im talking about.
where are the heavenly beings known as the mods on threads such as these.
here is a newbie, who needs clear, concise, and reliable info, and we have our all star, tailz, trying to convince her she lives near 72 cell phone towers.
tailZ-
EVERYONE IN THE US LIVES IN SOMEWHAT CLOSE APPROXIMATEY TO A CELL PHONE TOWER.
maybe we should all call atat, cingulat, and verizon, and demand that they take down their towers....
OR, maybe we should invest our time into matters and people we can actually change/effect??
i think its a no brainer (no pun intended.)
humbly
derek
pps- also look out for ET, he is known to come anf inject you with MORE lyme late at night so be careful
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
yeah im not sure what the phone tower thing means. i'm pretty sure it was a tick that bit me.
is it true you are not allowed to drink alcohol if you undergo treatment?
Posts: 11 | From NJ | Registered: Nov 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Tailz, I don't agree with your EMF theories re affecting all with Lyme- BUT I do think magnetic fields can make bacteria more pathogenic and prehaps electrical as well. I think the jury IS out on a lot of that. I am glad you are here with us because I really like you and you may believe things different than many of us but you are always polite and patient and nice!!! And I DO WONDER about electrical fields in relation to many things- sometimes I wonder if you are our Cassandra!!! If everyone who held a variant opinion from the mainstream was as respectful as you, we would have an extremely harmonious forum*)! I really appreciate that about you- and I hope your feelings are not too hurt by anything- Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Hi Sara. Yes, it is possible that the Lyme never went away, as a matter of fact from everything I know about Lyme, it never leaves your body, thus the inabilty to donate blood.
But you can go many years asymptomatic, or have very mild symptoms that you would never attribute to Lyme.
I was 16 was I was first infected, treated with IV antibiotics for 8 months then oral on and off for a couple more years.
I am now 36 and am being treated again after having a flare up of symptoms a few years ago. Which I didn't know were from the Lyme until a few months ago.
I also live in NJ so if you need a specialist I can give you names, as can most others on this site. Everyone is wonderful here.
Be aware, most Lyme Literate Medical Doctors do not accept insurance, so the note from your primary doc is a moot point.
As for the alcohol, with certain meds you cannot have any. I'm in that situation right now, stinks with the holidays upon us. But it's best to keep alcohol consumption to a minimum while being treated with any meds for Lyme.
Hope this helps.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Sara.
Drinking alcohol is a big no no if you have lyme. Thats not to say I havent had a drink or seven along my way through lyme. But anything that weakens the immune system is out.
You can get rid of your chronic headaches by getting rid of the lyme. I doubt you ever got rid of the initial infection you had. I'm so sorry you had to live all these years more than likely still having the same infection that was never properly treated. ( and it wasnt).
I was bit nine months before diagnosis. I am five YEAR of treatment, going into the sixth year.
And, a single tick bite carries MORE than just lymE, or can. It can also carry babesia, bartonella, erlichia, and the list goes on- all of which require different treatment.
Have you posted in seeking a doctor yet? you are surrounded by some really great Lyme Literate Medical Doctors- the ones that know ten days of antibiotics do not cut it.
Start digging into as much information as you can. You're going to have to be your own advocate on all this.
My rash still to this day springs back out. Sometimes it isnt even there, but for ME, its always in the same place.... but thats just me.
Welcome here anyway, even if under these circumstances. Just be chosey with what information you listen to and which information you don't. I think everyone is trying to help and every little bit DOES help, but what may bother or hurt someone else
isn't the same for everyone that comes here. I'd drink rejuvenated frog pee if I thought it would make me better at this point, but so far, a few alternatives and ALOT of antibiotics have done the trick just fine.
Good luck. Please post in seeking a doc!
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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posted
Treatment cost will vary. The main out of pocket cost will be the consultation with the llmd. You could call the 2 I sent you and they will give you a price. The prescriptions that they write for oral abx are usually covered if you have a prescription plan even if the doc writing them isn't taking your insurance. That has been my experience at least.
I want to warn you to STAY AWAY from steroids. A lot of docs will want to give steroids for inflammation that you may have or even steroid injections. This will not be good, it will further suppress your immune system. It has caused many of us with lyme some setbacks.
As far as alchohol. You will be fueling the bacteria. It's like throwing gasoline on a fire. One of the symptoms of lyme listed from Tutu is
38.Exaggerated symptoms or worse hangover from alcohol.
As fas as the towers.... There are studies that prove emf's can cause harm and it is very important that it becomes known, but at this stage in your quest this shouldn't be a main priority, as you need to get the possible lyme situation assessed by the propper llmd. Hopefully any debates on this subject will take place in another thread just to spare you the crossfire.
Please don't be discouraged by any bickering you may see. Get all the info you can from this great resource.
Good luck, Rich
Posts: 413 | From nj | Registered: Nov 2005
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tailz
Unregistered
posted
I wonder what you all are going to do when the 200 on the EMF forum realize that they all have Lyme and that EMF sensitivity is somehow related and I send them all here because the two are related?
Are you going to attack those EMF-sensitive Lyme positives like you attack me? Or are you saving it for me - an old-timer?
This is a place where newbies come for advice. The medical establishment doesn't believe in chronic Lyme any more than it believes in electrosensitivity. How is that different? Am I missing something here?
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