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Old 05-03-2009, 06:32 PM   #1
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Dx with Fifths Disease but still suspect Lyme. Worth getting a 2nd opinion?

hello everyone

i am an 18 y/o female who has been feeling sick for the last few months:

-irregular periods (every 2 weeks) for awhile
-fatigue (i am exhausted even after 10 hours of sleep on weekends)
-asthma
-calf pain
-on/off muscle twitching (my entire body)
-i have developed anxiety and even ocd like tendencies since sept of 2008
-brain fog/lack of concentration (its hard for me to keep up my high marks in school which is troubling)


the above can be attributed to a lot of disorders (and just be completely psychosomatic) but the onset of new symptoms over the past few weeks is troubling to me:

-my asthma flared has up considerably. when i take deep breathes i get a pain in my chest. it feels like my entire chest cavity is inflamed. which makes me suspect pericarditis
- terrible, terrible joint pain. almost brinking on debilitating. started in my fingers, progressed to my wrists, ankles, toes, and now my knees. i am an avid runner but i have not mustered up the strength for even a brisk jog in two weeks.

i went to my GP who immediately suspected Lyme. I live in the NE and I have been riding horses for many years so I am considered 'high risk' She ran blood work and a urine analysis. A few days ago, the PA from the office called and told me everything was perfectly normal. (ANA neg, Lyme neg, Rh factor neg, Monospot neg) I was completely frustrated. I asked for my Dr. to call me back because I have become much worse. She called me back and I told her the joint pain has become a lot worse. She said on the blood work that
'just came in recently' showed indications of Parvovirus b19. Though I told her I have no rash she said that Fifths Disease typically presents with extreme joint pain in adults. she told me all I could do was wait it out a few more weeks and take motrin.

it has been a week, and nothing is working. I have probably tried every brand of ibuprofen and naproxin. the only thing that does give me relief oddly enough is not hot showers (which i think makes the pain worse actually), but cold showers. typically Fifths Disease lasts only a few weeks, but i have heard of the pain not subsiding for months and months for some adult cases. i found an infectious disease specialist who is a LLMD nearby on LI. i am wondering if it is worth getting a second opinion because LD tests are so typically unreliable or should i just accept the fifths dx and wait it out? am i just being silly?


thank you for any insight!
(xposted in infectious disease)

 
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Old 05-03-2009, 08:24 PM   #2
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Re: Dx with Fifths Disease but still suspect Lyme. Worth getting a 2nd opinion?

Hey dayandage,

I don't think it would be unreasonable for you to get Lyme serology done--especially given you live in a high risk area, though if your parvo serology was positive, you have your diagnosis right there...especially if it was the IgM (rather than the IgG) fraction which was found in your blood. Additionally, don't worry about this whole "Lyme literate" thing--if you have an infectious diseases doctor, you will have a person who will reliably be able to diagnose/rule out Lyme--especially if you live in the NE states where they are all Lyme experts.

Fifth disease is the name for the syndrome children get when they are acutely infected with Parvovirus B19....this includes the red "slap-cheek" rash; however, the manifestations of Parvo infection in adults is not the same as "fifth disease". Parvo often causes a debilitating inflammatory arthritis + serum sickness which you seem to have gotten. You're right, it's something you unfortunately have to wait out...often no amount of NSAID will help, and for severe symptoms, doctors may put their patients on a short course (less than 2 weeks) of prednisone to help with the symptoms. Another important manifestation of parvoviral infection is pure red cell aplasia...in other words, your red blood cell productions ceases suddenly. It eventually returns in a week or so.

You may have read some of my previous posts, but while you have a lot of troubling symptoms, they are all pretty much non-specific except for maybe the joint pain. It doesn't point towards any one single diagnosis. The fact that you got one...i.e. parvo, suggests that it is the most likely cause and I would stop looking. If you start barking up the Lyme tree with non-specific symptoms as you have, you'll end up in somewhat of a circular argument where you are "diagnosed" with the disease because some well-meaning doctor feels that conventional testing is inadequate. The problem is, you could end up being on long-term IV antibiotics, which other than being medically futile, is dangerous and can lead to harm to you and also to the population at whole by fostering antibiotic resistance. Not really all that helpful if the right diagnosis was a viral syndrome the whole time.

Does that make sense?

Last edited by harka; 05-03-2009 at 08:26 PM.

 
Old 05-03-2009, 11:20 PM   #3
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Re: Dx with Fifths Disease but still suspect Lyme. Worth getting a 2nd opinion?

Quote:
Originally Posted by cgranulomatis View Post
If you start barking up the Lyme tree with non-specific symptoms as you have, you'll end up in somewhat of a circular argument where you are "diagnosed" with the disease because some well-meaning doctor feels that conventional testing is inadequate. The problem is, you could end up being on long-term IV antibiotics, which other than being medically futile, is dangerous and can lead to harm to you and also to the population at whole by fostering antibiotic resistance. Not really all that helpful if the right diagnosis was a viral syndrome the whole time.
I very much agree with this - it seems that doctors can sometimes be easily 'lead' to believe a certain disease/illness exists because so many symptoms are the same in many illnesses. Lyme disease and other tick-borne diseases have so many symptoms that it is almost impossible to distinguish them - joint, muscle, nerve pain, fatigue, mental issues, rash, etc, etc, every single bodily system and function. The tests are not 100% accurate. I was on IV abx for years and tons of oral abx, and am still no better for it. I feel ripped off and robbed of years of my life, along with my life savings.

Last edited by JaneDoeToo; 05-03-2009 at 11:20 PM.

 
Old 05-03-2009, 11:34 PM   #4
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Re: Dx with Fifths Disease but still suspect Lyme. Worth getting a 2nd opinion?

Yes go for a second opinion...I was never one to just sit and wait and if nothing else you need something stronger than Motrin to handle the pain! I think there is so much going on you might need 'fresh eyes' to take a look and listen.

 
Old 05-04-2009, 04:50 AM   #5
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Re: Dx with Fifths Disease but still suspect Lyme. Worth getting a 2nd opinion?

If I were you I would get checked out . Do you remember a bite? You might also check out chlamydia pneumonia which has been linked to asthma and can cause all of your symptoms too.

 
Old 05-04-2009, 07:35 AM   #6
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Re: Dx with Fifths Disease but still suspect Lyme. Worth getting a 2nd opinion?

I agree with Ann, you definatley need a second or third opnion. Don't settle with the parvo diagnoises. There are many people that have lyme that also have Parvo.

I wouldn't just stick with an Infectious Disease doctor. You need a Lyme Literate Medical Doctor. Many of the infectioius disease doctors have NO clue on what they are talking about.

No matter what, you have you need to get the proper treatment. Putting it off could mean years of extended treatment.

It took me 9 years of antibiotics and I am still under doctors care because doctors turned their noses up when I told them I had been bitten by ticks. Funny my dogs vet and my chiropracter knew what I had. ugh!

I went to a few infectious disease doctors, and of course they said NO WAY I had lyme. jerks....

I had no idea what a Lyme Literate Medical Doctor was. If I had known then I wouldn't of wasted my time with being told I had hundreds of other conditions. What a waste of my life and money.

You might want to read up on the symptoms of Lyme. IF this is what you have the longer you wait the harder it is to get well. Thre are also co-infections that you can get from ticks. Such as Babesia, which could be the reason you are having trouble with your breathing. I would post on the lyme board or contact your local Lyme Support Group and request a Lyme Literate Medical Doctor. This is something you should jump on as soon as possible. Testing for Lyme and other infections are not always accurate. So you need someone that will also go on a clinical evaluation.

Many prayer's and good thoughts to you,

Jodie


 
Old 05-04-2009, 07:41 AM   #7
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Re: Dx with Fifths Disease but still suspect Lyme. Worth getting a 2nd opinion?

Hi I posted to you on the Infectious Disease Board. I agree with Telvock you should be tested for Chlamdia Pnumoniae, Mycoplasma Pnumoniae, Babesia, Bartonella. There are many co-infections you can get.

Also your levels for Epstein Barr Virus and Cytomeglovirus.

Good Luck,

Jodie



 
Old 05-04-2009, 07:50 AM   #8
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Re: Dx with Fifths Disease but still suspect Lyme. Worth getting a 2nd opinion?

Your lab results for Lyme could be completely irrelevant if not sent to one of the labs that knows how to do proper testing for Lyme. Then, even if it did come back negative you could still have LD.

 
Old 05-05-2009, 03:12 PM   #9
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Re: Dx with Fifths Disease but still suspect Lyme. Worth getting a 2nd opinion?

Well, I am on my 5th week of IV antibiotics for Lyme Disease and for the first time in SIX years I can go all day without having to take a nap. The lifting of the fatigue in such a short amount of time is DRAMATIC for me, both in terms of quality of life and improved health.

I understand your concern and need to warn people (because there is a chance of antibiotic-resistance, and yeast if you're not vigilant about probiotics, etc.).

But criticizing long term IV antibiotic use, when it can save someone's life and can return people to health levels they haven't had in nearly a decade, really does much more harm than good.

 
Old 05-06-2009, 05:28 PM   #10
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Unhappy Re: Dx with Fifths Disease but still suspect Lyme. Worth getting a 2nd opinion?

Quote:
Originally Posted by seekfind View Post
But criticizing long term IV antibiotic use, when it can save someone's life and can return people to health levels they haven't had in nearly a decade, really does much more harm than good.
Well, I understand that you may not understand my history. I am not one to criticize something strongly unless I have direct personal experience. I was diagnosed with lyme disease, and bartonella, and both kinds of ehrlichiosis, now called anaplasmosis, and babesia, along with past infections of rocky mountain spotted fever and q-fever. I did eventually see a LLMD, lyme literate medical doctor to get the diagnosis. I felt lucky at the time to find someone that knew what they were doing. In hindsight, it seems I just felt relieved to find someone who offered some hope and had answers to all the questions as to what was causing the problems. It was the third LLMD I saw that made the diagnosis. I will not name names, or states, or sexes, etc., but I do assure you these are THE "LLMD's". Why did it take until the fourth one to get a diagnosis - ?? I was treated with antibiotics - you can't get more aggressive with antibiotics than me - so I was told by the LLMD's. I was on 4 grams of rocephin daily for almost a year - for the first round. And a repeat about a year after that. I was tested for babesia, rocky mountain spotted fever, q-fever for about 8 years many many times before I ever tested positive for these. I was never bitten again, I was treated aggressively for babesia, etc., for years in spite of the negative tests. I do understand, so I've been told many times, about the need to use the 'right' lab(s). Why is it that there is only one lab in the country that can do a decent lyme test? Why can only one lab do a decent heavy metal test? In spite of massive amounts of IV and oral antibiotics, anti-malarials, and an obscene amount of other drugs, I am no better than when I started. I can travel alot lighter these days - I have no job, no house, no savings account, no friends (who wants to hang around a chronically sick person who can't go anywhere or do anything?) I had an extremely successful career and a very healthy savings - not anymore. I am convinced it was a very large waste of money and time - aside from the years of my life lost, emotional stress, and what all those drugs did to my body. I was diagnosed with panic disorder and having terrible panic attacks, especially at night when I was alone. Every night, rather, every time I would lay my head down to take a nap I would begin to 'panic', and my body would feel startled and I would awaken. I could not relax. It was horrible trying to sleep -- for ten years, every single time. The more I told providers about this, the more they diagnosed me as a psych case and put me on more or increased medications. What they all failed to realize was that the symptoms of panic attacks, asthma attack and respiratory suppression are quite similar. The very doctors that were 'helping' me were causing my symptoms. You can not combine high dosage of narcotics with many psych drugs, else it results in respiratory suppression. It is like suffocating daily. But, if you are overweight, the difficulty breathing is blamed on your weight and lack of exercise. Why is it, these are somewhat rhetorical questions as I don't expect you to really have the answer, that it was not until I started figuring out that the medications were causing the majority of my problems and that I thought the antibiotics weren't necessary, that I suddenly after 8 years of testing/treatment, tested positive for babesia, rocky mountain spotted fever and q-fever, for the FIRST time? I think this is a good question - but I'm called paranoid if/when I question their treatment. I am not against long-term antibiotics because of antibiotic resistance issues, I'm against them because I don't think they resolve the problem. If you look at some of the lists of tick-borne disease symptoms, they encompass every body part and function from head to toe to skin, organs, hair, and brain. Anyone with any disease or condition that has a myriad of symptoms could easily fall into these categories - easily. And I did take probiotics and nystation and diflucan and prevent yeast infections for all those years. I was the perfect patient - I've just lost my patience. It ran out with my life savings... I'm not the only person this has happened to. In hindsight, I went to the emergency rooms (many emergency rooms) overdosing from the prescribed medications, but no one could figure out I was overdosing. They just said it was from the lyme disease or it was psych manifestaions. Well, if it was, then why did it suddenly clear up when I stopped the narcotics and the psych drugs, muscle relaxors, ADD drugs, etc..? Some hospitals did do drug screens - no one recogized the known advertised adverse interactions and one ER's drug tests even came out completely clean! I was on a high dose of fentanyl and benzo drugs and I tested clean - impossible! I have other top specialists, internationally known, or so I am reminded when I go to their office, doctors tell me I was getting chronic obstructive pulmonary disease, brain damage, etc. I was told I was getting or have lots of horrible scary diseases. I was simply totally wasted on all the drugs, just too wasted to recognize it. My significant brain damage, shown in the SPECT scans slowly cleared up after a year off the drugs. I still mean more drugs, not just the fentanyl and psych stuff. The benzo drugs cause rhinitis, so I was on allergy medications, which caused more chest and sinus pain when combined with the respiratory suppression, so I was put on asthma meds and when they didn't work, I was taught to use a nebulizer. That didn't help with the 'asthma', more xrays, more tubes and camera's up/down my nose. I know this sounds like a lot, but it is only the highlights. There is so much more **** to the picture! My first doctor, turns out, killed a patient - too many prescription drugs taken as ordered for a misdiagnosis. I didn't find this out until years after it happened. The states don't have to inform people who were/are being treated by physicians who get their licenses revoked. I thought they simply 'retired' and actually sent them a note to wish them well! Once you find a doctor that will give you a diagnosis, the rest fall in line, like lemmings. It is like mob mentality - people hear other opinions and if they don't know any better, they ASSume the others are right. There were some doctors that tried to warn me along the way about the amount of medication and treatment I was getting. But, I was so caught up in the whole lyme literate activism/education movement, I ignored all warnings. Start checking more in depth with your diagnosis, who are you being referred to, who do they know and how do they know each other, what drugs and supplements are they selling, who, how are they associated with those drug and supplement companies, are they one of the owners, profit-holders? I'm guessing you may find many inter-relationships that I don't think should exist and that appear as conflicts of interest. If I'm being paranoid it is a learned and conditioned response -- wiser for the wear. All that said, I am sure that some people do get lyme disease, but as to the real severity and what treatment is really necessary, I'm not so convinced anymore about the long-term antibiotics, or tons of prescriptions/supplements approach. But, every thing is relative. When people are extremely sick, they become needy and desperate for help. Whoever offers them help/hope may have a good sales pitch, but may not really know what they are doing, resulting in harm in the long run. I'm not saying the doctors are trying to cause harm, just that they are taking too many pop shots. If they don't know what to do, I'd rather be told that and move on, rather than unknowingly become someone's guinea pig.

Last edited by JaneDoeToo; 05-06-2009 at 05:30 PM. Reason: Add the unhappy face icon

 
Old 05-07-2009, 07:34 AM   #11
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Re: Dx with Fifths Disease but still suspect Lyme. Worth getting a 2nd opinion?

Misdiagnosis is hell. I have been there, for ten years until I finally got the Lyme diagnosis. Seems like we're on opposite ends of the spectrum. I think you're an anomaly actually and most people WITH Lyme get misdiagnosed rather than people with other diseases being told they have Lyme. Especially where I live (northeast US) it's really hard to get a Lyme diagnosis. Even if you're bitten by a tick, they do a "wait and see". They're VERY hands-off about it, for some reason. It took me ten years to finally get the right diagnosis.

I do understand your circumstances as I too, have lost everything from being ill/misdiagnosed: house, divorce, all my friends, money...so I can completely relate. I am on SSDI living below poverty.

I've also been told it's all in my head (back 8 years ago) and that I should take up meditation (which I was already doing). So, I can relate there.

4gm of Rocephin is an incredibly high dose. Wow. I am on 2gm and my visiting nurse said that's double the norm.

There are many "systemic" diseases, I am sure. I haven't researched it. But Lyme likes to attack certain areas, the Thyroid gland and the bladder, for example. I have hypothryoid (or now thyroiditis) from Lyme. And I had frequent UTIs since getting bitten by a tick. This is classic for Lyme but my PCP did not catch it as most PCPs are just looking for a bullseye rash. It's ludicrous.

Sorry you had to go through a misdiagnosis like that. Hope they have a cure for Fifths Disease.

 
Old 05-07-2009, 08:58 AM   #12
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Re: Dx with Fifths Disease but still suspect Lyme. Worth getting a 2nd opinion?

Hi guess we all have our stories. The bottom line is no matter what chronic illness you have you are going to lose many things in your life.

Because I was misdiagnoised, like both of you lost many many things, husband, house, Good Paying job, A baby, Family, friends. I lived off of 500 a month and had 50 dollars left to eat off of. Which didn't really matter at that point. Hell I had lost it all and misdiagnoised for 15 years and I was DYING...I was calling the suicide hotline many times. The insanity of it all to just get ONE ******* doctor to help was just incrediable. Then to have friends and family tell you that there is nothing wrong. That you had better get ahold of yourself and get over the divorce. UGH!

Anyway another one of those long stories short. Up until I got to a doctor that started treating me for lyme. I was on 14 prescriptioins at a time from a doctor that just kept rotating drugs. The problem is I told him and countless others that I was bitten....And not ONE of them would adress the problem . Even my dogs vet told me I had lyme. Even my chiropractor said I had babesia. Lyme....But to get all of the shrinks, g.p's ect to listen Heavens no. I had countless MRI's, cat scans, bone scans, hey I was a walking money maker for these people. And all it would of taken at the very beginning was a few months of antibiotics.

Anyway many many people get the run around from these so called doctors. When my father had cancer...For a year we took him to countless doctors. and yep he finally died. And they they said, HEY he had cancer...It was just insane.

A friend of mine who started out with Chron's disease, now has diabetes and the doctors just keep piling on the meds/ He has had heart attacks and strokes. And he has spent countless days in the hospital. And every day is a struggle. Many supplements and medications. ....My opnion....something bacterial or viral or both....

So guess bottom line is ...If we find a doctor that helps us then we are truly Blessed!

Also when you have a bacterial or viral problem no matter what it is. It takes many years and countless hit and miss supplements and med's to get them under control.

I finally got to the point where I knew that the tons of antidepressants, relaxers, pain med's, uppers downers...weren't fixing the problem And I stopped them.
These were prescribed by the many many doctors that I saw before I found my 2 God Send doctors.

Jane so what do you feel you have if it isn't Lyme, babesia, bartonella ect..?

I started treatment in 1999 and here 10 years later I am still trying to battle all of this. But the good news is...I can walk now, use my arms, I don't stutter all the time for a loss of words, I no longer go to ER..I am not in a wheel chiar, Mental Hospital or Care Home...Yes it got that bad.

I am still on SSDI.

Thankful for my last 2 Out of the Box doctors!!!

God Bless You Both.

Jodie



 
Old 05-07-2009, 05:54 PM   #13
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Re: Dx with Fifths Disease but still suspect Lyme. Worth getting a 2nd opinion?

Quote:
Originally Posted by jojo View Post
Jane so what do you feel you have if it isn't Lyme, babesia, bartonella ect..?
Jodie

Good Question. I don't have a simple answer. I would like to write more here, but I'm exhausted after that marathon response. I'll get back to you.
Take Care.

 
Old 05-19-2009, 08:33 PM   #14
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Re: Dx with Fifths Disease but still suspect Lyme. Worth getting a 2nd opinion?

Quote:
Originally Posted by JaneDoeToo View Post
I don't have a simple answer. I'm exhausted ...
I have my "simple answer". I am confident now that my myriad symptoms are due to protracted withdrawal from medications, primarily the benzodiazepines, and probably a bit from the Neurontin, antidepressants, fentanyl... I have been reading an extremely good web site from the * removed link * I started following the links provided and reading other peoples stories, websites, online free books. I don't/can't repeat everything here 'cause it's too much to type. I also know other drugs I was given caused problems not only with withdrawal, but from taking them, such as the Neurontin, Nexium, and I highly suspect some of the antibiotics. Neurontin makes my hair fall out and I'm wondering if it is what 'helped' make my teeth loose. The other drugs are known to cause toxic neuropathy. I had complained about these at the time I was taking them to the doctor, before I knew about toxic neuropathy or protracted withdrawal, but they said they had never seen a case of muscle problems/neuropathy from those antibiotics. I suspect now that they just don't recognize a case when they see it. They fault babesia or lyme or other tick borne diseases for everything. My strong opinion is that they should not be prescribing drugs that they (he) does not know or fully understand their actions, interactions, and long-term effects.

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Old 05-20-2009, 01:13 PM   #15
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Re: Dx with Fifths Disease but still suspect Lyme. Worth getting a 2nd opinion?

That's interesting that where you live doctors blame tick borne disease for everything. Where I live (MA) even though it's an endemic area, if you have a history of a tick bite they immediately discount the idea of contracting a disease from the bite. Who knows why?

I just learned recently that a friend of the family had bad side effects (not withdrawal) from a medication that truly mimicked Lyme (palsy, neuropathy, etc.). So you're on the ball (fortunately) to realize that neurotoxin buildup in the brain and peripheral neuropathy can be caused by many things, just one of which is the Lyme bacteria.

 
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