Aa
Possible lymes symptoms
Hi I think I might have symptoms similar to those in Lyme disease.Four years ago whilst camping in ireland I became aware of a large red mark on my trunk and a rash on my spine like hives but in a straight line along my spine.This was followed by months of migratory joint,muscle and bone pain everywhere from knees to fingers and feeling Severe fatigue with most symptoms worsening in the evening.hI also had many conjunctival haemorrhages Was referred to rheumatologist who suspected palindromic arthritis.All symptoms disappeared but following year noticed was very itchy all over in evening even after antihistamines no amount of scratching got rid of it.this went on for two years.This year I've been to endocrinologist with nodules on lymph nodes.now I have a very sore neck, (where neck meets back) and serious myoclonuc jerks every night the second I lie down.they feel like they're coming from base of my spine.im at my wits end and feel like a hypochondriac at this stage.i know doctors look at me like I'm cuckoo!any ideas would be hugely appreciated.i also have photos of all visible symptoms
Thanks,ollie113
Thanks,ollie113
CORRECTIONS
"The antibiotics recommended above can work well but ONLY if the tick bite is very very recent, and many of us never know when we were bitten. Lyme ticks --> [[NO! SHOULD SAY: Lyme bacteria]] <-- will, after a short time, hide in the body in areas of low blood flow, such as cartilage, where the immune system does not reach."
And the last line: "Keet us posted" -- well, that's a classic. T and P are nowhere near each other on the keyboard. Sigh..
"The antibiotics recommended above can work well but ONLY if the tick bite is very very recent, and many of us never know when we were bitten. Lyme ticks --> [[NO! SHOULD SAY: Lyme bacteria]] <-- will, after a short time, hide in the body in areas of low blood flow, such as cartilage, where the immune system does not reach."
And the last line: "Keet us posted" -- well, that's a classic. T and P are nowhere near each other on the keyboard. Sigh..
[Part two of message above]
"Considerable evidence suggests that in all disseminated Lyme infections, seeding of the CNS [central nervous system] occurs early, possibly within hours after the bite
[***maybe, but not relevant, since Lyme can and does manifest differently in each person -- some of us have more neurological symptoms, others have more physical symptoms in the joints, etc.***]!
"Yet spinal tap antibodies to Bb are only positive in 18-20% of cases
[***because Lyme does not like to hide in the spinal fluid! Instead it goes to areas of low blood flow such as cartilage, where the human immune system cannot easily find and kill it.***].
"Laboratory tests, therefore, have certain limitations and diagnosis is initially clinical and may be supported with a high degree of probability by lab tests.
[***There are two different test approaches: the original tests called Western blot and ELISA are still used, but they are often faulty and fail to register a Lyme infection. If these tests are positive, they are a good indicator of infection. If they are negative (meaning no infection located), they may be entirely wrong, because Lyme bacteria can and do suppress the immune system, so no antibodies are made for the test to register. The other test approach is called PCR, short for polymerase chain reaction, which looks for DNA of the Lyme bacteria in your bloodstream. Some MDs will ot use the PCR test because they believe the Western blot/ELISA tests are sufficient, but they are not very accurate.***]
"... Physicians are very familiar with it and usually see the skin manifestation - Erthyma migrans - in a primary care setting.
[***but ONLY if the rash appears! Often it never does.***]
"They immediately start antibiotics, Doxycycline or Amoxycillin for 3-4 weeks and frequently do not do blood tests as these often confuse matters. Early treatment is very important.
"Treatment of Lyme disease depends on many factors and is controversial in the sense that many practitioners who treat chronic Lyme disease believe the smaller doses of antibiotics are not really effective. These doctors would advocate Doxycycline, but only in a dosage high enough (300 - 600 mg daily). They would use probenecid with Amoxycillin. Cephalosporins are also used, but must be of third generation, e.g. Claforan or Rocephin being the main ones. The latter are used usually if there is CNS involvement and are best given IV for a minimum of six weeks. Claforan is the drug of choice, as Rocephin has 95% biliary excretion which may cause 'sludging' problems. Accompanying treatment recommendations are: -
Daily yoghurt or acidophilus preparation;
Multivitamins and B complex;
Healthy lifestyle with avoidance of alcohol, excess stress and caffeine.
[***The antibiotics recommended above can work well but ONLY if the tick bite is very very recent, and many of us never know when we were bitten. Lyme ticks will, after a short time, hide in the body in areas of low blood flow, such as cartilage, where the immune system does not reach. Thus Lyme can be treated with doxycycline but be totally ineffective if the bacteria have dispersed into cartilage. In addition, the Lyme bacteria are able to create slimy shields in the body, called biofilms, where they can hide and not be detected by the immune system. Different medications (often flagyl) are used to break into the biofilms so the antibiotics can then kill the Lyme bacteria hiding inside. Otherwise, Lyme persists.***]
============================================
Sorry to run on here, but thought the information might be useful. Your physician may have an open and inquiring mind. Reading Dr Burrascano's treatment guidelines on the ILADS website would be a good start for your MD.
Keet us posted!
"Considerable evidence suggests that in all disseminated Lyme infections, seeding of the CNS [central nervous system] occurs early, possibly within hours after the bite
[***maybe, but not relevant, since Lyme can and does manifest differently in each person -- some of us have more neurological symptoms, others have more physical symptoms in the joints, etc.***]!
"Yet spinal tap antibodies to Bb are only positive in 18-20% of cases
[***because Lyme does not like to hide in the spinal fluid! Instead it goes to areas of low blood flow such as cartilage, where the human immune system cannot easily find and kill it.***].
"Laboratory tests, therefore, have certain limitations and diagnosis is initially clinical and may be supported with a high degree of probability by lab tests.
[***There are two different test approaches: the original tests called Western blot and ELISA are still used, but they are often faulty and fail to register a Lyme infection. If these tests are positive, they are a good indicator of infection. If they are negative (meaning no infection located), they may be entirely wrong, because Lyme bacteria can and do suppress the immune system, so no antibodies are made for the test to register. The other test approach is called PCR, short for polymerase chain reaction, which looks for DNA of the Lyme bacteria in your bloodstream. Some MDs will ot use the PCR test because they believe the Western blot/ELISA tests are sufficient, but they are not very accurate.***]
"... Physicians are very familiar with it and usually see the skin manifestation - Erthyma migrans - in a primary care setting.
[***but ONLY if the rash appears! Often it never does.***]
"They immediately start antibiotics, Doxycycline or Amoxycillin for 3-4 weeks and frequently do not do blood tests as these often confuse matters. Early treatment is very important.
"Treatment of Lyme disease depends on many factors and is controversial in the sense that many practitioners who treat chronic Lyme disease believe the smaller doses of antibiotics are not really effective. These doctors would advocate Doxycycline, but only in a dosage high enough (300 - 600 mg daily). They would use probenecid with Amoxycillin. Cephalosporins are also used, but must be of third generation, e.g. Claforan or Rocephin being the main ones. The latter are used usually if there is CNS involvement and are best given IV for a minimum of six weeks. Claforan is the drug of choice, as Rocephin has 95% biliary excretion which may cause 'sludging' problems. Accompanying treatment recommendations are: -
Daily yoghurt or acidophilus preparation;
Multivitamins and B complex;
Healthy lifestyle with avoidance of alcohol, excess stress and caffeine.
[***The antibiotics recommended above can work well but ONLY if the tick bite is very very recent, and many of us never know when we were bitten. Lyme ticks will, after a short time, hide in the body in areas of low blood flow, such as cartilage, where the immune system does not reach. Thus Lyme can be treated with doxycycline but be totally ineffective if the bacteria have dispersed into cartilage. In addition, the Lyme bacteria are able to create slimy shields in the body, called biofilms, where they can hide and not be detected by the immune system. Different medications (often flagyl) are used to break into the biofilms so the antibiotics can then kill the Lyme bacteria hiding inside. Otherwise, Lyme persists.***]
============================================
Sorry to run on here, but thought the information might be useful. Your physician may have an open and inquiring mind. Reading Dr Burrascano's treatment guidelines on the ILADS website would be a good start for your MD.
Keet us posted!
I have a bit of Irish in me as well, 'cousin.' :)
If the MD you see is not aware of current approaches to Lyme testing and treatment, you might look at the website of ILADS.org, short for International Lyme and Associated Diseases Society.
Also I just searched online for
-- "lyme disease" ireland --
and got some interesting information. There appear to be a number of groups and websites focused on Lyme disease, if you have not seen them already. If the MD you are seeing is not open to the idea of Lyme being something to be dealt with seriously, then I would consider approaching one of the groups for guidance in finding another MD.
Among what popped up in the search are:
-- TickTalkIreland. org -- (I have broken up the website addresses here with extra spaces etc. because this website tries, understandably, to limit advertisements and links to other websites.)
-- IrishHealth. com
-- "Lyme Disease" by Dr. Pat Crowley, posted on the National Association of General Practitioners website at nagp.ie. Here is part of it, with a few comments from me set off this way: [*** xxxxxxx ***]:
----------------------------
Dr Pat Crowley looks at the investigation and management of
LYME DISEASE
"LYME Disease is a tick-borne spirochetal disease that is becoming important for a number of reasons. By not thinking of this possible diagnosis, one may easily overlook it in many areas: for instance, arthritic, neurological, cardiac, dermatology, autoimmune and some others. A firm diagnosis renders it susceptible to treatment by antibiotics. Left untreated, like the famous spirochete of syphilis or the Brucellosis epidemic in Ireland in the 1960's and 1970's, chronic ill health may ensue.
"The main reason we in Ireland have to be aware of it is the explosion in travel of the general population, particularly to areas where Lyme disease is endemic. In the USA, Lyme disease is now the most common vector borne disease, reported in 45 states and endemic in more than 15. The highest rates occur in three distinct foci: Northeast U.S.A. from Maine to Maryland, Midwest in Wisconsin and Minnesota and in the West in Northern California and Oregon
[*** actually, it is everywhere in the U.S., so don't assume you can't get Lyme unless you are in these specific areas ***].
"Two of these areas are the most heavily visited by Irish people in the Boston, Chicago, New York triangle.
"In Europe the highest incidence is in Middle Europe, particularly Germany, Austria and Switzerland - increasingly visited by Irish tourists.
[***again, it is everywhere ***]
"Pure native incidence of Lyme disease is low
[*** or so they think! ***]
", mostly got in forestry workers or frequenters, but there are a number of cases described, including diaphragmatic neurological paralysis in a 39 year-old male after a camping holiday in Galway.
"Lyme disease is caused by B.burgdorferi in U.S.A; and B.afzelii and B.garinii in Europe, all pathogenic species of Borrelia, a spirochetes-like organism. ...
[*** there are a number of species of Borrelia, which is the family name for the different strains of 'Lyme' bacteria. Ticks can't read maps, and with worldwide travel today, Lyme goes where it wants to go. If a physician tells you 'we don't have Lyme here', find another physician.***]
"Clinical manifestations consist of a localised, slowly expanding skin lesion - Erythema migrans - which occurs at the site of the tick bite.
[***This is correct, but ONLY in perhaps half of all those who have Lyme disease. The rest of us never see a tick or a rash -- I didn't. And if you get a tick or rash on the scalp, for example, you won't see it either.***]
"This is an unusual sign for Irish GPs but almost pathgnomic of the disease. The original tick bite may be totally painless, particularly in a larval tick. The rash, usually in the midriff/upper leg area
[***only if the tick has a good sense of anatomy! Ticks will bite you anywhere they please.***]
", is present usually 7 to 10 days after initial infection and is very distinctive being described typically as "doughnut" shaped and reaching a size of approximately 5cms
[***but again, ONLY if it is present and if it is seen! Many of us never saw tick or rash.***].
"It is often accompanied by a flu-like syndrome and regional lymphadenopathy
[***meaning swollen glands***].
"As many as 80% of cases in the USA present this way
[***given how many of us with Lyme were not properly diagnosed, this percentage is bogus***].
"Once you have seen Erythema migrans you will never forget it. Remember 'doughnut'. If you see and feel that, in all probability it'sLyme disease.
[***But remember! Many many of us never see tick or rash.***]
"Within weeks other signs may show-up. Fifteen per cent of cases get neurological involvement. Most common is facial palsy, but others such as myelitis, lymphocytic meningitis, cerebellar ataxia and, in children, optic neuritis which may lead to blindness . About 5% of cases will have acute cardiac involvement, mostly A/V block and, in chronic cases, cardiomyopathy. Months (2 - 6) after onset, 60% of cases develop intermittent joint pain and swelling, mostly large joints - especially the knee
[***how they calculate percentages is a mystery, since the MDs overlook many cases of Lyme because we don't have the circular rash or see a tick.***].
"In about 10% of this group the arthritis persists for several years, even after antibiotic therapy
[***again, the statistics are questionable and are likely higher***].
"Other symptoms and signs in the dermatological and immune category may co-exist; along with fatigue and mood disorder."
"The diagnosis of Lyme disease can be very difficult. It has never been isolated from CSF
[***meaning cerebro-spinal fluid***].
"Serology [blood tests] in the form of ELISA testing and Western blotting techniques are poor guides, with false negatives of up to 30% and false positives of 10%.
***[It is correct that there are many false negatives, meaning you are infected but the test is negative. I would not assume any positive test to be false -- there is something specific triggering the test, and ignoring it is very risky.***]
===========continued in next message below===========
If the MD you see is not aware of current approaches to Lyme testing and treatment, you might look at the website of ILADS.org, short for International Lyme and Associated Diseases Society.
Also I just searched online for
-- "lyme disease" ireland --
and got some interesting information. There appear to be a number of groups and websites focused on Lyme disease, if you have not seen them already. If the MD you are seeing is not open to the idea of Lyme being something to be dealt with seriously, then I would consider approaching one of the groups for guidance in finding another MD.
Among what popped up in the search are:
-- TickTalkIreland. org -- (I have broken up the website addresses here with extra spaces etc. because this website tries, understandably, to limit advertisements and links to other websites.)
-- IrishHealth. com
-- "Lyme Disease" by Dr. Pat Crowley, posted on the National Association of General Practitioners website at nagp.ie. Here is part of it, with a few comments from me set off this way: [*** xxxxxxx ***]:
----------------------------
Dr Pat Crowley looks at the investigation and management of
LYME DISEASE
"LYME Disease is a tick-borne spirochetal disease that is becoming important for a number of reasons. By not thinking of this possible diagnosis, one may easily overlook it in many areas: for instance, arthritic, neurological, cardiac, dermatology, autoimmune and some others. A firm diagnosis renders it susceptible to treatment by antibiotics. Left untreated, like the famous spirochete of syphilis or the Brucellosis epidemic in Ireland in the 1960's and 1970's, chronic ill health may ensue.
"The main reason we in Ireland have to be aware of it is the explosion in travel of the general population, particularly to areas where Lyme disease is endemic. In the USA, Lyme disease is now the most common vector borne disease, reported in 45 states and endemic in more than 15. The highest rates occur in three distinct foci: Northeast U.S.A. from Maine to Maryland, Midwest in Wisconsin and Minnesota and in the West in Northern California and Oregon
[*** actually, it is everywhere in the U.S., so don't assume you can't get Lyme unless you are in these specific areas ***].
"Two of these areas are the most heavily visited by Irish people in the Boston, Chicago, New York triangle.
"In Europe the highest incidence is in Middle Europe, particularly Germany, Austria and Switzerland - increasingly visited by Irish tourists.
[***again, it is everywhere ***]
"Pure native incidence of Lyme disease is low
[*** or so they think! ***]
", mostly got in forestry workers or frequenters, but there are a number of cases described, including diaphragmatic neurological paralysis in a 39 year-old male after a camping holiday in Galway.
"Lyme disease is caused by B.burgdorferi in U.S.A; and B.afzelii and B.garinii in Europe, all pathogenic species of Borrelia, a spirochetes-like organism. ...
[*** there are a number of species of Borrelia, which is the family name for the different strains of 'Lyme' bacteria. Ticks can't read maps, and with worldwide travel today, Lyme goes where it wants to go. If a physician tells you 'we don't have Lyme here', find another physician.***]
"Clinical manifestations consist of a localised, slowly expanding skin lesion - Erythema migrans - which occurs at the site of the tick bite.
[***This is correct, but ONLY in perhaps half of all those who have Lyme disease. The rest of us never see a tick or a rash -- I didn't. And if you get a tick or rash on the scalp, for example, you won't see it either.***]
"This is an unusual sign for Irish GPs but almost pathgnomic of the disease. The original tick bite may be totally painless, particularly in a larval tick. The rash, usually in the midriff/upper leg area
[***only if the tick has a good sense of anatomy! Ticks will bite you anywhere they please.***]
", is present usually 7 to 10 days after initial infection and is very distinctive being described typically as "doughnut" shaped and reaching a size of approximately 5cms
[***but again, ONLY if it is present and if it is seen! Many of us never saw tick or rash.***].
"It is often accompanied by a flu-like syndrome and regional lymphadenopathy
[***meaning swollen glands***].
"As many as 80% of cases in the USA present this way
[***given how many of us with Lyme were not properly diagnosed, this percentage is bogus***].
"Once you have seen Erythema migrans you will never forget it. Remember 'doughnut'. If you see and feel that, in all probability it'sLyme disease.
[***But remember! Many many of us never see tick or rash.***]
"Within weeks other signs may show-up. Fifteen per cent of cases get neurological involvement. Most common is facial palsy, but others such as myelitis, lymphocytic meningitis, cerebellar ataxia and, in children, optic neuritis which may lead to blindness . About 5% of cases will have acute cardiac involvement, mostly A/V block and, in chronic cases, cardiomyopathy. Months (2 - 6) after onset, 60% of cases develop intermittent joint pain and swelling, mostly large joints - especially the knee
[***how they calculate percentages is a mystery, since the MDs overlook many cases of Lyme because we don't have the circular rash or see a tick.***].
"In about 10% of this group the arthritis persists for several years, even after antibiotic therapy
[***again, the statistics are questionable and are likely higher***].
"Other symptoms and signs in the dermatological and immune category may co-exist; along with fatigue and mood disorder."
"The diagnosis of Lyme disease can be very difficult. It has never been isolated from CSF
[***meaning cerebro-spinal fluid***].
"Serology [blood tests] in the form of ELISA testing and Western blotting techniques are poor guides, with false negatives of up to 30% and false positives of 10%.
***[It is correct that there are many false negatives, meaning you are infected but the test is negative. I would not assume any positive test to be false -- there is something specific triggering the test, and ignoring it is very risky.***]
===========continued in next message below===========
Hi JackieCalifornia,
Thanks for your response.Im from County Meath,Leinster,Ireland and unfortunately we have a severe lack of Llmd's over this side of the Atlantic.Im making an appointment today to see a doctor and hope he won't look at me like a crazy woman when I ask to be tested for Lyme
Thanks again
Ollie113
Thanks for your response.Im from County Meath,Leinster,Ireland and unfortunately we have a severe lack of Llmd's over this side of the Atlantic.Im making an appointment today to see a doctor and hope he won't look at me like a crazy woman when I ask to be tested for Lyme
Thanks again
Ollie113
Sorry to hear about your misery!
We can give you some ideas on how to find a Lyme specialist to see if you have Lyme disease and the other infections the 'Lyme' ticks often carry.
Would you let us know generally what area you are in -- you sound like you might be in England -- 'whilst' is not American usage, but we won't hold it against you. :)
Many MDs simply don't think of Lyme, and they are often confused by the variety of symptoms which Lyme produces (and they can also be confused by other symptoms that may be caused by additional infections that the same 'Lyme' ticks often carry).
We'll help you if we can --
We can give you some ideas on how to find a Lyme specialist to see if you have Lyme disease and the other infections the 'Lyme' ticks often carry.
Would you let us know generally what area you are in -- you sound like you might be in England -- 'whilst' is not American usage, but we won't hold it against you. :)
Many MDs simply don't think of Lyme, and they are often confused by the variety of symptoms which Lyme produces (and they can also be confused by other symptoms that may be caused by additional infections that the same 'Lyme' ticks often carry).
We'll help you if we can --
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