posted
Hi guys! I am so glad I found the forum. It seems to me I can get a lot of support and maybe answers to some of my questions.
I will start first by saying that I was diagnosed with Lyme 4 weeks ago after experiencing a variety of different symptoms for the past 4 years and seeing more than 10 doctors (gynecologists.)
I was diagnosed after a cytokine analysis test which showed that my immune system was activated. One of the suggestions from the lab was a Borrelia exposure test. I had the My Lyme Immune I.D test done by Neuroscience. Here are the results from the test:
Western Blot: IgG bands: negative for all IgM bands: p23 and p41 Positive
My doctor concluded I have Lyme and put me on 400 mg of Doxy.
Since then I read a lot or articles and watched the documentary "Under our skin" and the more I think about it the more I don't believe I have Lyme. My symptoms started 4 years ago. I have been complaining of vaginal inflammation ( i am completely unable to have intercourse), hair loss(periodically), hypothyroidism (first I was on 25, then on 50, then it increased on 75 and now I am taking 125 levothyrohin), lack of libido (i am on a hormonal replacement therapy), numbness in the vaginal area, pain in the left leg (only the left), tiredness(which I attribute to the thyroid problem) and brown patches around the vaginal area.I know that almost all of those symptoms can be a sign of Lyme but for I haven't experienced any kind of other symptoms in the last 4 years. I NEVER had any rash on my body, i never saw a tick on my body, i don't have any neurological problems, no stiff neck and no more than only occasional headaches.
It seems to me that Lyme is a disease which can have devastating consequence on the body and this happens very fast. It is difficult for me to believe that I can have Lyme for 4 years and experience only mild symptoms. I always though that my symptoms are gynecological related.
I guess my question to all of you is :
Has someone ever experienced only mild symptoms like mine? Also is it possible that the results of the test to be false positive? Or can they be attributed to something else?
Posts: 17 | From san francisco | Registered: Aug 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
your western blot pos 23 and 41 do indicate lyme and there are often false negatives but i dont think there are false positives
i dont understand your other testing
lyme is very individual with everyone being different. ticks carry more infections than lyme(borralia or Bb) and there are many strains of Bb and depending on your genes and medical history you can react differently
there are all kinds of ppl here-mild, moderate, severe...some of the reasons why we all react differntly are beginning to be explained by research
you are on a good dose/drug to start but rarely do ppl get better with only doxy. if your doc will keep you on it 6-8 weeks it wouold be helpful...and give you time to find a real lyme doc called an llmd
others will be along to help you. its good you found us. i hurt too much to keep typing now...good luck. keep learning here and come for support
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
I know this is weird, but could the bite have originated in that area??
Do you have any fatigue /weak. chest colds etc??
tired and huge fatigue are two different thing's to me..I have both....
Have they put a scope in you to check bladder??
For about 8 months I kept complaining about issues bsides this infection,,,Couldn't see anything on test,,, ,but once they got in and looked it was like chopped hamburger..
It was a large enough office to be done there...
If you tested positve for Lyme now,,,don't ignore it... You could have 2 thing's or one is causing the other...
I didn't start out this bad,,,but after a few years and them giving me steroids,,,, I'm in my room 90% of time...
Some is logistics most is not..
MEDOW,,,NO MATTER WHAT,,, NO STEROIDS, shots ,pills, nose spray any,,unless it's life or death and then only if you're on strong ANTIBIOTICS first and for a wile after..
What are your manesium levels??
you could need mag shots (give yourself at home) for a while...Get to a LLMD
Remember no steroids ..you are going to regret it if you do
Also I'm sorry for my short-hand thinking and typing, it's part of this and just me...
But most of us can't read big blocks of type.
So put lots of space in your post/break it up..It will help others help you..
Sorry you have to be here,but glad you found a place to go to.....
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Many many of our diseases and illnesses are related to tick borne infections. Most people have no idea.
Something about Lyme Disease upsets the HPA axis (hypothalmus - parathyroid - adrenal glands). One thing goes out of whack, and then it's a cascade effect.
When the glands are affected, you can end up with thyroid problems, reproductive problems, diabetes, growth problems.
Lyme bacteria live in the cells throughout the body, and this causes diffuse inflammation and hypercoagulation. This contributes to heart disease and digestive problems.
Systemic enzymes and nutritional supplements can help the body regain balance. You may need to treat for heavy metals and parasites.
I have a suggestion for the vaginal inflammation and pain. Look into pulsed electromagnetic therapy, such as the SOTA Magnetic Pulser.
It's non-invasive, non-drug.
Pulsed Electro Magnetic Fields influence cell behavior by inducing electrical changes around and within the cell. Improved blood supply increases the oxygen pressure, activating and regenerating cells.
Improved calcium transport increases absorption of calcium in bones and improves the quality of cartilage in joints, decreasing pain dramatically. Acute and even chronic pain may disappear completely.
Posts: 6950 | From Lancaster, PA | Registered: Feb 2004
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Yes, it is possible for Lyme to only cause one symptom. I know someone who has Lyme and has only one symptom. He herxes (his one symptom gets worse) on Lyme treatments, and does not respond to "accepted western medicine" for his one symptom.
Furthermore, Lyme prefers to cause trouble on the left side of the body. You have a symptom on the left side of the body, and you have a positive Lyme test.
I think that you need to be evaluated by a Lyme-Literate ILADS trained physician who can answer your questions in the setting of understanding your specific case and history.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While you have many symptoms that can be lyme, just about the gynecological symptoms for a minute. You report 4 years of vaginal inflammation, pain and tissue changes. It could be:
The (likely) vulvodynia that you describe can certainly be caused by lyme or other chronic stealth infections.
Candida can also be connected, especially with antibiotic use. Be sure to take PROBIOTICS away from Rx but you'll also need something like Olive Leaf Extract, IMO, to counter candida - or Rx like Diflucan.
On to the diagnosis:
Lyme CAN proceed slowly.
Wish I could go back to those years where I just wasn't my best but not yet broken. Wish I had known years earlier what was wrong. Would've had a much better chance.
Still, as you have questions about the diagnosis, see an ILADS educated LLMD for full assessment and a more detailed treatment plan.
One single Rx is not the best way to go with lyme. It's much more entailed than that but it can also depend upon the various strains of borrelia.
You should also be assessed for other tick-borne infections. -
[ 08-31-2012, 04:42 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Infect Drug Resist. 2011;4:97-113. Epub 2011 May 3.
Evaluation of in-vitro antibiotic susceptibility of different morphological forms of Borrelia burgdorferi.
Excerpt:
. . . Conclusion
Antibiotics have varying effects on the different morphological forms of B. burgdorferi.
Persistence of viable organisms in round body forms and biofilm-like colonies may explain treatment failure and persistent symptoms following antibiotic therapy of Lyme disease.
=========================
Liver support & Adrenal support are also very important before and all during treatment. Most LLMDs are well aware of those methods. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Be sure to log in to retrieve your messages.
In the Bay area, right in your back yard, there is a LL gynecologist. I just sent you a PM with that contact information that Robin123 once posted.
I suggest you make an appointment with that doctor, although she may not be a full-treating LLMD for a full lyme protocol -
- yet because she is LL - she will be the best for gynecological matters for women who have or suspect lyme.
In the meantime, while you wait for appt, CarolinPA has some good suggestions in her post above. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
You could still have Lyme. When you have a good immune system and it is functioning, one can get patches of these disturbances.
Borrelia and company can set up shop ANYWHERE in the body. I had symptoms for YEARS, at least over a decade that I had no idea were related to Lyme. It is so subtle for some. I have seen the same thing with other family members, where they have mild symptoms for a long time and it would be just about impossible for a Lyme illiterate to make the connection.
The symptoms in general are bothersome but in no way debilitating. They range from stomach pains, tiredness, pains in only one spot, headaches, soreness, or ear infections. Even with 1 or 2 symptoms they were still sporadic and came and went at various times and with months of time.
You must erase what we previously thought about Lyme and start with a fresh look. After years of only 1-2 symptoms and after treatment it started to spread like wildfire and I now have many of the Lyme symptoms, including now joint soreness, snapping, crackling, and stabbing pains at times.
Posts: 2094 | From NY | Registered: Oct 2011
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
If you continue to question the diagnosis and stop meds, perhaps getting the new culture test would be in order, to set your mind at rest about what you have. It catches most cases, and is not as puzzling to understand when you get the results.
I don't know what you have, but will mention that for almost three years I only had one symptom, plus another one very rarely. At that time it did not add up to lyme for me, but then I didn't see the tick either and didn't know much about the disease.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
YES!! I had hardly any symptoms of Lyme until the tick bite then my immune system exploded defending the new reinfection. The only symptoms I had was strange cyclical monthly flu like ilness 1-2 days, pain in elbow that had been DX as bursitis and carpal tunnel in wrist, same side, was loosing ability to write and grip, numbness behind right knee where bitten by no see ums while hiking in S America, al of this started going away with treatment for the tick bite, unfortunately the Tx dr gave me too low of a dose of doxy ( he put his practice before treating patients correctly, he is an ILADS DR and knew better), had to wait a couple of months to go out of state for a higher dose and better mix of antibiotics, etc.
Posts: 532 | From Texas | Registered: Oct 2004
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posted
And for some reason these bacteria love the lower abdomen like bladders and the vaginal area. That and "juicy nutritious brains" as Eva Sapi has said :-)
Actually, thinking more on that issue. If this is transmitted sexually, it would make sense that the spirochetes would set up home close to where it was first transmitted. Just a thought.
-------------------- IgM: [18++,31+++,34++,41++,83-93+] [39 IND] IgG: [41 IND] Positive according to IGeneX. Negative according to CDC. Negative for co-infections. Currently treating for Lyme, Bartonella, Babesia Posts: 225 | From Minnesota | Registered: May 2011
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posted
I don't think the patients in the "Under Our Skin" video are the typical Lyme patients. They are extreme examples of what can happen when the medical profession initially fails. Many of us have had years of aggravation with several symptoms (like you) that typical MD's have no idea how to treat. As the others have said, go see an ILADS LLMD ASAP!!!
Posts: 177 | From Ohio | Registered: Aug 2012
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posted
Oh, actually, I take back what I said about thinking my bladder issues were sexually transmitted Lyme/co-infections. Thinking back I rememebered that my bladder issues started very young. So, nevermind about that. It was an interesting thought, though :-)
-------------------- IgM: [18++,31+++,34++,41++,83-93+] [39 IND] IgG: [41 IND] Positive according to IGeneX. Negative according to CDC. Negative for co-infections. Currently treating for Lyme, Bartonella, Babesia Posts: 225 | From Minnesota | Registered: May 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Within hours of a bite by an infected tick, borrelia can be in the nerve fibers, all through the body.
I can't find the quote about that but, I clearly remember reading that within 12 hours it can evade detection by the immune system and invade the central nervous system. I don't remember how I titled my file for that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I love Google. That �12 hour� detail is easily found with these key terms:
. . . Only 12 hours after entering the bloodstream, Borrelia burgdorferi can be found in cerebrospinal fluid (which means it can affect the nervous system). . . .
Borrelia burgdorferi in the central nervous system: experimental and clinical evidence for early invasion. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Doesn't sound like vulvodynia to me. The main symptom is pain.
Many here NEVER had a rash. (I didn't) Tons of others never saw the tick. The deer tick nymphs are the size of this period.
Take the abx for a month or two to see if you herx. If you do, you are on the right track.
Band 23 IS Lyme specific.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Welcome! Let me tell you how lyme disease affected me.
For 5 years, my only symptom was episodes of extreme muscle weakness. When I got an episode, I sought out a doctor. When, it left, I was totally normal. This went on for 5 years.
After 5 years of that, the lyme attacked me gynecologically. Doctors told me my diagnosis was menopause. Right. I had the menopause from hell.
To see how lyme affected me gynecologically, you can read a detailed description of my symptoms here:
As the years went by, I got more and more symptoms. By 10 years of lyme disease, I was pretty sick.
So, that gives you an idea of how this disease can slowly progress. Then, suddenly more and more symptoms can hit you.
Lyme can attack any bodily system. So, every lyme patient can be very different. I never saw an attached tick, and I never got a bulls eye rash. This is very typical. We just know that we went from doctor to doctor trying to find someone who could figure out what is wrong with us.
For me, it took 10 years to find the doctor who figured out I had lyme.
It sounds like you went to a doctor who knew something about lyme disease, based on the tests he performed.
If you don't trust that he knows enough, you could go to another doctor that you consider a real lyme expert and get another opinion. Sorry, but that is how lyme is diagnosed, even in the year 2012--it is the doctor's judgment.
Here is a quote from the Burrascano Lyme Treatment Guidelines:
"DIAGNOSTIC HINTS Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms. The entire clinical picture must be taken into account, including a search for concurrent conditions and alternate diagnoses, and other reasons for some of the presenting complaints. Often, much of the diagnostic process in late, disseminated Lyme involves ruling out other illnesses and defining the extent of damage that might require separate evaluation and treatment.
Consideration should be given to tick exposure, rashes (even atypical ones), evolution of typical symptoms in a previously asymptomatic individual, and results of tests for tick-borne pathogens. Another very important factor is response to treatment- presence or absence of Jarisch Herxheimer-like reactions, the classic four-week cycle of waxing and waning of symptoms, and improvement with therapy." (page 7)
This is the definitive document on lyme disease. It was written to doctors, so it is not an easy read, but it will give you your education on this disease.
Notice the last sentence of the quote. The doctor confirms the lyme diagnosis by treating you and seeing what happens.
Make careful note of all that happens while you are on the doxy. Note bad days, good days, symptoms, etc. Doctors usually have the patient rate every day (10 is outstanding, 1 is awful) to see if there are waxing and waning of symptoms or herxheimer reactions.
Lymetoo is telling you that if a person gets a positive on band 23 of the Western Blot, that this is a very specific response to lyme disease only. So, that totally points to lyme disease.
Here is an explanation of the Western Blot by a well-known lyme doctor:
posted
Oh my gosh YES it can be gradual! I had vague symptoms for years. Drs couldn't find anything wrong so I tried to ignore the vague symptoms.
Now I'm in the bed half of the time with debilitating symptoms!
I too have had female problems from Lyme. I had terrible pain down low one night like my uterus was going to fall out. All because I had jumped on a trampoline that day!
Lyme can do ANYTHING!
Posts: 415 | From USA | Registered: Jun 2012
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posted
I just wanted to thank all of you who replied to my post.
Hearing all of your stories made me understand that Lyme can be expressed in many different ways.
This makes me feel I am on the right path with my treatment.
Regarding my vaginal pain, NONNA05 made a comment:
[QB] I know this is weird, but could the bite have originated in that area??
Regarding that question I would like to ask : do people tend to experience more pain/rashes/discomfort in the
area where the tick entered the body first or not? It is important to note that I am talking about chronic
Lyme not a week after the tick entered the body.
According to my doctor that is not true. He thinks that once the tick enters the body it attacks the weakest part of the body. In my case the vaginal area.
I would love to hear what some of you think about that.
Take Care!
Posts: 17 | From san francisco | Registered: Aug 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Either way, actually. Ticks do tend to migrate to the groin area and a bite in that area from an infected tick could cause more trouble, I suppose.
But remember, that in just 12 hours, spirochetes can be found in nerve tissue through the central nervous system. Spirochetes can also (literally) spring anywhere at all.
Once BORRELIA enters the body it MAY attack the weakest systems/functions/areas of the body -- but no system/function/area can really "hide" and lyme can attack any (previously) healthy tissue.
And, lyme can also just stay quiet for a while.
There's a line that rings true from a song in the musical PIPPIN ["No Time at All" by Stephen Schwartz]
"For there's one thing to be sure of Mate
There's nothing to be sure of" -
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