posted
I am wondering about the likelihood that I have Lyme. I am interested in opinions regarding this likelihood from individuals who have suffered from Lyme or have family members/friends who have suffered and who have spent a great deal of time researching Lyme. I have spent an inordinate amount of time researching Lyme. I am particularly interested in knowing if anyone has ever met someone with my particular constellation of symptoms which are NOT classic. This post will be long. Forgive me if I'm breaking a rule in this regard. My father has chronic Lyme and is treated by a good LLMD. In a million years, I would never have considered this as a possibility for myself unless I had a family member with it. I live in a highly endemic area. In 2003, I became pregnant. Late pregnancy was hard on my lower abdomen, groin and hips. I had pain in the inguinal area that pretty much resolved after I had the baby in December 2003. As far as I can remember, the pain got much better after delivery. I still had some hip problems, but not enough to keep me from running in a 10 mile race. Life was fine until June 2005 when I contracted mono. Looking back, I'm not confident it was mono. It felt like a bad cold, sort of "flu-ish," but it would never have driven me to the doctor until I also developed conjunctivitis. Mucus was pouring from my eyes. The lymph nodes in my neck were slighly swollen. I was diagnosed with mono via monospot test. Got better. In September 2005 I was diagnosed with thyroid cancer and treated for it. Treatment finished with radioactive iodine which is a pill you swallow. The radioactivity tends to collect in the bladder (obviously near the groin area) before eventually being flushed from the body. Within a month of treatment, classic "pregnancy" symptoms returned. Severe inguinal pain, hip pain, and eventually a brief period of numbness that lasted a couple of hours in my entire groin area. The pain was migratory, hurting in the groin region, but in different locations on different days. Many days it was mons pubis pain; rarely internal. I could not sit. I stood most of the time at work and laid down at home. When attempting to exercise, I would get watery sensations up and down my legs in addition to the pain. With P.T. and care, I began to get a little bit better. I can sit easily again. A few months later I developed muscle "flicking" or "twitching" (nonpainful) in my legs and inguinal region... several hundred per day. I also developed a buzzing in my feet that was more noticeable when I sat down with my feet planted firmly on the ground. This is still there constantly and is noticeable when sitting, in bed, and in the bath. Later I develped sore heels upon waking in the morning that would have me walking on the sides of my feet for a few minutes after getting out of bed. I also developed a brief bout of mastitis (I was not breast feeding) that went away with antibiotics. In fact, it seemed to go away in less than 24 hours of initiating antibiotics. After months, I developed neck and upper back pain, including periods of neck stiffness without pain, and mildly swollen lymph nodes on the right side of my neck. Also, my P.T. (whom I now need for neck and back pain, in addition to groin pain) recognizes a certain "bogginess" or fleshiness on the right side of my neck that makes my neck lack symmetry, but only very mildly. This is observable to everyone, but only after it is pointed out. Ultrasound indicates it is not malignant. Recent follow up testing for thryoid revealed no abnormalities. I also experience pain at night in bed if I relax my fingers in a typical relaxed but "curled" position for more than 10 minutes. This developed within the last couple of months. The same happens with my elbows, so that a lot of the time I sleep with my arms stretched out so that my joints are not bent. When I drive, I have to shift my arms quite a bit because pressure can make them sensitive. The muscle flicking or twitching has gravitated to all over my body, with the exception of my face. Arms, legs, abdomen, back, inguinal region, under my chin. Literally hundreds per day. The migrating pain, peripheral neuropathy and twitching appear consistent with the possibility of Lyme. I get heart flutters occasionally (EKG normal). I developed an eczema-like rash on my chest (quarter size) that will not go away. I've never been "rashy." However, I have not had any fatigue, memory problems, or "brain fog" that appears to always occur to a certain extent with Lyme. I went to my father's LLMD for a quick "rule out" of Lyme. Unfortunately, it has not been a quick rule out. Most testing came back negative for even exposure to anything. However, my CD57 was 66 and my babesia IgG was 1:320. Follow up testing is being conducted by Igenex. I don't have the results yet. My doctor will treat me if I want to be treated. In fact, he started me on Mepron and Biaxin last week. I did not notice any herxing to speak of. On the other hand, my elbows did hurt one day during the day as opposed to just at night and the joints in my fingers were very sore yesterday (much less so today). These were new symptoms. In the last two years, several specialists (physiatrist, neurologist, o.b.) have not been able to figure out why I'm in pain. It has been described as myofascial pain and "fibromyalgia-like." I am just wondering how I go about making an informed decison about whether to treat. If it were a matter of a few weeks of antibiotic, it would be a no brainer. However, for most people it is months or longer until they notice improvement. Has anyone ever met or heard of anyone with these symptoms; missing the fatigue, etc? If the Igenex testing comes back positive, should I err on the side of caution and continue treatment, even if it means for months? Would you?
Posts: 129 | From Virginia | Registered: Feb 2008
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posted
That was kinda hard to read, but I think I got most of it. Some of those thing sound lymey.
Some of them sound like coinfections. Besides babesia there is also bartonella mycoplasma ehrlichiosis. Make sure you check for that too.
Celiac disease is probably as underdiagnosed as lyme and often causes fybrimyalgia symptoms. That is really easy to check for. Just go on a gluten free diet for a month and see if you feel better. The cure is just as easy -quit gluten.
I don't know a lot about yeast, but I know it can wreak havoc on your body and you can develop an overgrowth any time you take antibiotics. Definitely get checked out for that.
Toxic mold can also cause symptoms that mimic ms cfs fm and lyme. Do you have leaking water in your house or has it ever been flooded?
Some of your symptoms sound like lyme and some don't. Unfortunately testing for lyme is not always accurate. It might be helpful to eliminate other possibilities.
Also, i forgot whether you said you had a baby or you just thought you were pregnant if it was the first get baby tested for lyme and coinfections, cause he/she could get them from you invitro or through breast feeding
Good luck. I know it is frustrating when you know something is wrong and your doctor can't tell you what it is.
Posts: 102 | From ny | Registered: Feb 2008
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Breaking this up for ease of reading -- hope you don't mind, Hokie-Pokie! :-)
Originally posted by hokie:
I am wondering about the likelihood that I have Lyme. I am interested in opinions regarding this likelihood from individuals who have suffered from Lyme or have family members/friends who have suffered and who have spent a great deal of time researching Lyme. I have spent an inordinate amount of time researching Lyme.
I am particularly interested in knowing if anyone has ever met someone with my particular constellation of symptoms which are NOT classic.
This post will be long. Forgive me if I'm breaking a rule in this regard.
My father has chronic Lyme and is treated by a good LLMD. In a million years, I would never have considered this as a possibility for myself unless I had a family member with it. I live in a highly endemic area.
In 2003, I became pregnant. Late pregnancy was hard on my lower abdomen, groin and hips. I had pain in the inguinal area that pretty much resolved after I had the baby in December 2003. As far as I can remember, the pain got much better after delivery. I still had some hip problems, but not enough to keep me from running in a 10 mile race.
Life was fine until June 2005 when I contracted mono. Looking back, I'm not confident it was mono. It felt like a bad cold, sort of "flu-ish," but it would never have driven me to the doctor until I also developed conjunctivitis. Mucus was pouring from my eyes. The lymph nodes in my neck were slighly swollen. I was diagnosed with mono via monospot test. Got better.
In September 2005 I was diagnosed with thyroid cancer and treated for it. Treatment finished with radioactive iodine which is a pill you swallow. The radioactivity tends to collect in the bladder (obviously near the groin area) before eventually being flushed from the body. Within a month of treatment, classic "pregnancy" symptoms returned. Severe inguinal pain, hip pain, and eventually a brief period of numbness that lasted a couple of hours in my entire groin area.
The pain was migratory, hurting in the groin region, but in different locations on different days. Many days it was mons pubis pain; rarely internal. I could not sit. I stood most of the time at work and laid down at home.
When attempting to exercise, I would get watery sensations up and down my legs in addition to the pain. With P.T. and care, I began to get a little bit better. I can sit easily again.
A few months later I developed muscle "flicking" or "twitching" (nonpainful) in my legs and inguinal region... several hundred per day. I also developed a buzzing in my feet that was more noticeable when I sat down with my feet planted firmly on the ground. This is still there constantly and is noticeable when sitting, in bed, and in the bath.
Later I develped sore heels upon waking in the morning that would have me walking on the sides of my feet for a few minutes after getting out of bed.
I also developed a brief bout of mastitis (I was not breast feeding) that went away with antibiotics. In fact, it seemed to go away in less than 24 hours of initiating antibiotics.
After months, I developed neck and upper back pain, including periods of neck stiffness without pain, and mildly swollen lymph nodes on the right side of my neck. Also, my P.T. (whom I now need for neck and back pain, in addition to groin pain) recognizes a certain "bogginess" or fleshiness on the right side of my neck that makes my neck lack symmetry, but only very mildly. This is observable to everyone, but only after it is pointed out. Ultrasound indicates it is not malignant.
Recent follow up testing for thryoid revealed no abnormalities.
I also experience pain at night in bed if I relax my fingers in a typical relaxed but "curled" position for more than 10 minutes. This developed within the last couple of months. The same happens with my elbows, so that a lot of the time I sleep with my arms stretched out so that my joints are not bent.
When I drive, I have to shift my arms quite a bit because pressure can make them sensitive. The muscle flicking or twitching has gravitated to all over my body, with the exception of my face. Arms, legs, abdomen, back, inguinal region, under my chin. Literally hundreds per day.
The migrating pain, peripheral neuropathy and twitching appear consistent with the possibility of Lyme.
I get heart flutters occasionally (EKG normal). I developed an eczema-like rash on my chest (quarter size) that will not go away. I've never been "rashy."
However, I have not had any fatigue, memory problems, or "brain fog" that appears to always occur to a certain extent with Lyme.
I went to my father's LLMD for a quick "rule out" of Lyme. Unfortunately, it has not been a quick rule out. Most testing came back negative for even exposure to anything. However, my CD57 was 66 and my babesia IgG was 1:320. Follow up testing is being conducted by Igenex. I don't have the results yet.
My doctor will treat me if I want to be treated. In fact, he started me on Mepron and Biaxin last week. I did not notice any herxing to speak of. On the other hand, my elbows did hurt one day during the day as opposed to just at night and the joints in my fingers were very sore yesterday (much less so today). These were new symptoms.
In the last two years, several specialists (physiatrist, neurologist, o.b.) have not been able to figure out why I'm in pain. It has been described as myofascial pain and "fibromyalgia-like." I am just wondering how I go about making an informed decison about whether to treat. If it were a matter of a few weeks of antibiotic, it would be a no brainer. However, for most people it is months or longer until they notice improvement.
Has anyone ever met or heard of anyone with these symptoms; missing the fatigue, etc?
If the Igenex testing comes back positive, should I err on the side of caution and continue treatment, even if it means for months? Would you?
Posts: 3193 | From Northern California | Registered: Apr 2005
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I'm not sure what the ranges are for the babs testing, but I presume your test shows babs? I think it's a good idea to be on babs treatment if you have symptoms and a positive test.
I would highly suspect bartonella with your sore feet.
I would take it a month at a time for now. First thing is you need to see the results of your IGeneX test, that may have some positive bands.
If it doesn't, see how you do on the treatment. I didn't herx until day 24 of babs treatment, so you still might.
Unfortunately there are not always clear answers concerning Lyme treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I'm not sure what the ranges are for the babs testing, but I presume your test shows babs? I think it's a good idea to be on babs treatment if you have symptoms and a positive test.
I would highly suspect bartonella with your sore feet.
I would take it a month at a time for now. First thing is you need to see the results of your IGeneX test, that may have some positive bands.
If it doesn't, see how you do on the treatment. I didn't herx until day 24 of babs treatment, so you still might.
Unfortunately there are not always clear answers concerning Lyme treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
If you have not done the Western Blot via Igenex for Lyme yet,
You may want to wait until you have taken 28 days of antibiotics
Go off for 10 days and then have them pull your blood for testing.
Igenex even recommends this antibiotic "challenge".
Allows for some die off of Lyme and potentially show the highest number of positive bands.
Not everybody with Lyme has neuro-cognitive issues.
Not everybody has joint pain or other physical symptoms.
Some of us lucky ones have both.
You definitely need to find a LLMD (Lyme Literate Medical Doctor)
Who specializes in Tick Borne Diseases.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
If it turns out you test positive, you may have had Lyme while pregnant, so it is possible to infect your baby in utero. Please talk to your llmd. Good luck with everthing.
Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
I'll add my two cents only to say that not everyone who has Lyme will herx in an obvious way. I'm one. If you're looking for the herx as some sort of "proof" it may not occur.
Keep us posted, and thanks for that detailed history.
bt
Posts: 299 | From New Hampshire | Registered: Jul 2007
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posted
I, too, didn't have all the "classic" Lyme symptoms like fatigue.
I have the muscle twitching like you do. Also low back pain which is in the SI joint. Was seeing a chiropractor for a while who said I had SI issues which I've since figured out is a place my Lyme likes to go. I haven't heard of anyone else with that issue.
My toes do a slight curling thing. I do twitch occasionally in my face.
I have had the foot buzz thing, too. And I get all over muscle vibrations.
The heels of my feet hurt, too. Almost feel bruised sometimes. Never been tested for bartonella (hmmmm).
Get an IGeneX test but don't be discouraged if you're negative (I was but had positive and IND bands).
Always remember Lyme is a clinical diagnosis. Your symptoms are enough to warrant treatment. You will likely need long term treatment, too. A few months won't do the trick.
~webmeg
Posts: 257 | From Connecticut | Registered: Oct 2007
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Its at the top of the post flashing or you can see them through the profile link at the top of the page
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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posted
It would be easy to go down that rabbit hole by chasing after symptoms and observing their response to different antibiotics and immune system modifiers, but unless your lyme test is definitively positive, I would err on the side of caution in this issue. One of the things that can happen during pregnancy is that the placenta elaborates an enzyme that takes 25 hydroxy vitamin D from Mom to make it more potent and give it to the fetus, as it is necessary for proper growth and development. By late pregnancy, especially if the later part of the pregnancy happens to be in the fall or winter, this can lead to vitamin D deficiency, which makes one prone to pain problems. Since your symptoms seemed to return in the fall a couple of years later (also a time when Vitamin D is in a decline, and 2005 was a year when not much sun was available from may to mid July, it rained alot) you should have the doc who ordered your lyme test investigate 25 hydroxy vitamin D levels and treat accordingly.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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