posted
i have following symptoms 1. floaters in eye 2. sensitivity to light 3. deep eye pain 4. pressure in back of head and sleepy 5. muscle cramps occasionally 6. teeth pain 7. temporary visual disturbances & headache (occurred 3 times) 8. sprained ankle hasn't recovered for 3 month
i have seen optometrist, dentist, neurologist, podiatrist. all of them comes out negative, except the neurologist diagnosed the headache as migraine. i did a brain MRI which came out normal. i have been searching around for months and come across lyme today, so should i consider lyme?
thanks very much!
Posts: 7 | From washington dc | Registered: May 2009
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bettyg
Unregistered
posted
welcome fynn to the board!
yes, EYE SENSITIVITY is one very key symptom that i had and still do 39 yrs. later!! no one could explain it to me.
post in SEEKING DR. forum; copy your above post there ok for the body text.
DC/VIRGINIA or is it maryland?? LLMD NEEDED in subject line....
go to bottom left corner and mark box to receive all replies ok; send!
CHILDREN'S LYME SYMPTOMS compiled by Geneal 6-07 From ``GENEAL'' June 2007
I have been doing some research regarding Lyme and signs/symptoms in small children.
I know many of you have small children that you may be concerned about. I believe my youngest child (4yrs old) may have gotten this disease from me.
For All Children
-dizziness -neck pain and stiffness in almost 90% -sore throats -swollen lymph nodes -excessive thirst, -Chest pains in at least 70%, some have palpatations -Sense of air hunger or shortness of breath, dry cough
-abdominal pain in about 50%, can mimic acute appendicitis -sometimes vomiting, heartburn -rashes that come and go, malar rashes, new psoriasis
-migratory arthralgias, joing pain in 50% to 100% -myalgias in over 80%, back ache, morning stiffness, pain at rest, muscle weakness
-frequent illnesses, dark circles under their eyes -intermittent red, hot pinnae of ears -sleep disturbance in over 80%
-Neurological symptoms are protean and can appear AT ANY TIME during the course of infection *hypersensitivity of skin, scalp and hair *Hypersensitivity to noise, light, smell *Alterations of taste *poor balance and coordination *Uncharacteristic behavior outbursts, mood disturbances, depression *social withdrawal *New onset phobias *Oppositional behaviors *Obsessive compulsive disorders *Deterioration in school performance in over 90% *Difficulty with concentration and attention in school with easily distractability as well as "brain fog" in over 80% *New onset of ADD
*When measured with formal neuropsychiatric testing, children demonstrate defects in auditory and visual sequential processing
Less Commonly:
*Movement disorders-spaticity, ataxia, motor or vocal tics *Cranial neuropathies, e.g. Bell's Palsy or optic nerve neuritis *Peripheral neuropathies-numbness and tingling, distal parathesias, subtle weakness
Pre-Schoolers and toddlers
- Mood swings, sudden emotional outbursts - Irritability - Personality changes - Regression of motor and social skills (developmental milestones) - Changes in play behavior, tire easily, less active
- Trouble falling asleep, frequent awakenings - Nightmares, new phobias, recurrence of separation anxiety - Diaper rash unresponsive to normal treatment - Frequent URI's, ear and throat infections, bronchitis, pneumonia
Congenital Lyme Disease
* Infants can be infected with Borrelia transplacentally in any stage of pregnancy and/or via mother's breast milk.
* The co-infections: Babesia, Bartonella, Mycoplasma and perhaps even the Ehrilichias can be transmitted transplacentally to the developing fetus.
* Gestational Borreliosis can be associated with repeated miscarriages, fetal death in utero, still births, hydrocephalus, cardiovascular anomalies,
intrauterine growth retardation, neonatal respiratory distress, and maternal toxemia of pregnancy.
* Infants either infected congenitally or from breast milk can have
- Floppiness with poor muscle tone - Irritability - Frequent fevers and illness early in life - Joint sensitivities and body pain - Skin sensitivity - Gastro esophageal reflux - Developmental delays -Learning disabilities and psychiatric problems
* Infants bitten very early in life will have many of the same symptoms - loss and decline in developmental milestones.
I found this to be a pretty inclusive list of signs/symptoms for small children, infants, and those suspected of congenital Lyme.
Sadly, my two children do exhibit many of these symptoms and both have positive bands for Lyme via Igenex diagnostic lab in PALO ALTO, CALIFORNIA. Geneal, 2007
Also, see Cheryl''s LYME INFO extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-10 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
Pronunciation of common co-infections from lymetoo/tutu 12-13-07
Ba BEE' see oh sis (Babesiosis) or commonly known as Ba BEE' sza (Babesia) bart un EL a (Bartonella) er LICK' ee oh sis (ehrlichiosis
___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)
___Muscle pains especially the calves; may be twitching and cramping also
___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)
___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.
___Tremors and/or muscle twitching
___Heart palpitations and strange chest pains
___Episodes of breathlessness
___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins
___Gastrointestinal symptoms, abdominal pain and acid reflux
___Shin bone pain and tenderness
Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever."
Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats).
Bartonella can also be transmitted by ticks that transmit Lyme Disease.
In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.
It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is "Bartonella-Like Organism" (BLO) that is yet to be fully identified.
While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families.
Babesiosis
As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:
___Chills
___Fatigue and often excessive sleepiness
___High fever at onset of illness
___Night sweats that are often drenching and profuse
___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)
___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"
___Depression
___Episodes of breathlessness, "air hunger", and/or cough
___Decreased appetite and/or nausea
___Spleen and/or liver enlargement
___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)
___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)
___Joint pain (more common with Lyme and Bartonella)
___anxiety/panic (more common with Bartonella)
___Lymph gland swelling (more common with Bartonella and Lyme)
*********the end; now, aren't you glad you asked? lol
look thru symptom lists links below! you've come to the right place for education/support/llmd lyme literate mds info!
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Hi fynn,
I found bettyg's list and information really helpful when I first came onto Lymenet and still to this day I refer back to it.
Wonko is soooooooo right too. Unfortunately, there is a lot of Lyme around here.
I see you are from DC. Have you been walking around Rock Creek Park? There are tons of deer there.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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tickbattler
Unregistered
posted
Hi fynn,
Yes, you could very well have lyme. All of the symptoms you mentioned can be either lyme or one of the other tick-borne infections that often appear with lyme (babesia, bartonella).
My best advice is to get evaluated by the right doctor. I'm not sure if you are aware of it, but there is a huge controversy going on now with lyme disease. Many mainstream doctors know very little about it and think that it is a disease about joint pain. They can easily steer you in the wrong direction and waste a lot of time.
That is why I would go to a medical doctor who specializes in only lyme disease "lyme-literate M.D." (LLMD) and not an infectious disease doctor.
You can find one from this site. Probably the first thing I would do if I were you would be to read Dr. Burrescano's "Advanced topics in Lyme Disease 2008" in order to undertand more about it. That will have a symptom list as well.
That is why I would go to a medical doctor who specializes in only lyme disease "lyme-literate M.D." (LLMD) and not an infectious disease doctor.
You can find one from this site. Probably the first thing I would do if I were you would be to read Dr. Burrescano's "Advanced topics in Lyme Disease 2008" in order to undertand more about it. That will have a symptom list as well.
Ditto, ditto, ditto!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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but i cannot recall when i got bitten by tick. i have only been involved in two outdoor activities since i came here. really, it is a minor chance for me to get infected. but all the symptoms really look like. i will go to see a LLMD sometime.
fynn
Posts: 7 | From washington dc | Registered: May 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
These first 3 posts may not mean much but, after you read a bit, you'll see that getting proper diagnosis and treatment has been very difficult for lyme and TBD (tick-borne disease) patients. You might just want to glance a the top three treads to get an idea of what is being done to help change that.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
-===
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in the Savely article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
===========================
AFTER reading the articles above this will make more sense and, sadly, shows the state of treatment (and - with the new committee gathered, it is still a horrible situation for there are no real experts on the new panel):
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM."
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
- In the menu to the left of their home page, you can order DVDs of past ILADS seminars. You might also be able to borrow some from your local lyme support group.
This are invaluable to understanding how these infections work. And, none of this is taught in medical schools. None.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I can relate--I don't recall a tick bite in my life, and am totally NOT an outdoors person!
I never had the distinctive "bull's eye" rash, either.
I was skeptical, but I'd gone through all testing imaginable with mainstream medicine.
I am still in treatment, but have had an obvious response to the antibiotics. It's more important to me to get better than to understand how I got it.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Stabbing eye pain was a big plus.
It hurt to put my fingers on lid and God forbid I
forget and rub when it itched. Had to do so ever
so gently. But it was not all the times just
certain times for @ 2 weeks at a time. Like everything else.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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i will definitely see a llmd. but is it curable and can be surely diagnosed?
Posts: 7 | From washington dc | Registered: May 2009
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by fynn: thanks again!
i will definitely see a llmd. but is it curable and can be surely diagnosed?
It is treatable and some people do seem to fully recover. Others struggle. Some relapse. There is no way to tell who will be the lucky ones.
Diagnosis is tricky and is first and foremost a clinical diagnosis and really, the best qualified person to do that is an LLMD. Blood work can support an LLMD's diagnosis.
Best of luck to you as you proceed on your path to better health.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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tickbattler
Unregistered
posted
I do think that most recover if they eat right and exercise (to the extent possible) and treat the coinfections as well as the lyme.
It can take a long time, but in your case I would be optimistic about recovery from the symptoms.
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