Aa
Lyme or not Lyme?
My results from Infectolab.
My blood samples were analysed on March 19, 2014:
Borrelia burgdorferi Elispot LTT
Borrelia burgd. Fully Antigen + 3 SI < 2
Borrelia OSP-Mix (OSPA/OSPC/DbpA) + 4 SI < 2
Borrelia LFA-1 (+) 2 SI < 2
The results of the Elispot-Lymphocyte-Transformation-Tests are an indication for an actual cellular activity against Borrelia burgdorferi.
Chlamydia pneumoniae Elispot LTT
Chlamydia pneumoniae-Elispot LTT (+) 2 SI < 2
The result of the Elispot-Lymphocyte-Transformation-Test (LTT) is an indication for a borderline/very weak actual cellular activity against Chlamydia pneumoniae.
CD 57 positive NK-cells 136 /µl 100-360
The CD57-cell-count is no indication for a chronic immune-suppressive situation caused by Borrelia burgdorferi.
My symptoms (all symptoms; all of them have not occuurret at the same time or for long times). (helyanna, female, 66 years, had ticks at the change of the seventies and eighties, and in summer 2009)
Neurological symptoms
dysautonomia (temperature regulation: freesing or hotness. Fluid and electrolyte imbalance)
cervical muscle dystonia
sometimes weak detrusor muscle
CFS since the eighties, no more fatique now
pain and freezing of legs during 1984-1985
lower body buzzing; burning sensation and blood vessel dilatation on feet
left hand DDK poor, now improved after antibiotics, left hand slower for typing, left arm and neck often tired or with pain
possible inflammation of left plexus brachialis in 1985
weak muscle reflexes
deficient touch sensation in feet
memory disorder 2006-2010
slight atrophy of left hippocampus
flushing and hotness of face
occasional insomnia and distress
Inner medicine
hypothyroidism, Erfa Thyroid in use, low thyroid hormone values
low body temperature
primary hyperparathyroidism, S-D1,25 elevated
periodic diabetes insipidus?, dehydration
small and pale red cells
Respiratory system
tightness of small bronchioles
respiratory difficulties
small unknown infiltrations in lungs, they do not grow in size
Reproductive organs
endometriosis
myomata
endometrial polyps
mastopathy
childlessness
Digestive system
previously often diarrhea, not nowadays; Helicobacterium antibiotic tretament 2006
some antibiotics cause antibiotic diarrhea, treatment with lactic acid bacteria
tightness of upper abdomen during walking, upper abdomen distending
cholelithiasis and cholecystectomia in 2010
sometimes pain in upper abdomen
Muscles and bones
variable pain in variable muscles and joints, arthritis in several joints, reactive arthritis, HLA-B27 positive, negative rheumatic factor
muscle weakness, eg. in the neck and legs, sitting difficulty
muscle cramps and tightness, tight muscle fasciae
loose joint ligaments, knee meniscus torn
osteopenia in 2008, no longer
Infections
chronic tonsillitis, long crypts full of actinomycete-like material, no pain in tonsils, only referred pain to the left; chronic sinusitis with no or little tough discharge; postnasal drip
sore red flecks in varying sites in mouth mucosa, ”Sjoegren's syndrome” (sicca syndrome) without antibodies; sialadenitis
long-lasting coughs, asthma-like condition in 2006
sometimes oral trush; overgrown(?) papillae full of small granulae on back of tongue
bubbling, white saliva with leukocytes
Immune defence
low IgG3, low lectin pathway of complement
sore enlarged lymph node in neck, then calcified
ACE and lysozyme sometimes elevated, sometimes lymphocytosis, atypic lymphocytes, toxic granulae in neutrophils, TNF-alpha elevated
ear symptoms
often otitis when child, not when adult
tinnitus
vertigo in spring 2013
pain around the left ear (from lower corner to temple) in spring 2013, possibly referred pain from left tonsil
eye symptoms
cataract in right eye
nasty feeling behind eyes
light gleaming in shut eyes, when in bed
floaters
conjunctivitis in the inner corner of right eye
drooping lid of right eye
Heart and circulatory system
long lasting atrial fibrillations, need electric cardioversion
SVTs, extrasystoles, previously often tachycardia paroxyxmalis
high or variable blood pressure, previously sometimes POTS, atenolol in use
Integument
hair falling
a small neurodermatitis fleck
Of course my other diseases complicate the sitaution. I have not had treatment to Lyme.
My blood samples were analysed on March 19, 2014:
Borrelia burgdorferi Elispot LTT
Borrelia burgd. Fully Antigen + 3 SI < 2
Borrelia OSP-Mix (OSPA/OSPC/DbpA) + 4 SI < 2
Borrelia LFA-1 (+) 2 SI < 2
The results of the Elispot-Lymphocyte-Transformation-Tests are an indication for an actual cellular activity against Borrelia burgdorferi.
Chlamydia pneumoniae Elispot LTT
Chlamydia pneumoniae-Elispot LTT (+) 2 SI < 2
The result of the Elispot-Lymphocyte-Transformation-Test (LTT) is an indication for a borderline/very weak actual cellular activity against Chlamydia pneumoniae.
CD 57 positive NK-cells 136 /µl 100-360
The CD57-cell-count is no indication for a chronic immune-suppressive situation caused by Borrelia burgdorferi.
My symptoms (all symptoms; all of them have not occuurret at the same time or for long times). (helyanna, female, 66 years, had ticks at the change of the seventies and eighties, and in summer 2009)
Neurological symptoms
dysautonomia (temperature regulation: freesing or hotness. Fluid and electrolyte imbalance)
cervical muscle dystonia
sometimes weak detrusor muscle
CFS since the eighties, no more fatique now
pain and freezing of legs during 1984-1985
lower body buzzing; burning sensation and blood vessel dilatation on feet
left hand DDK poor, now improved after antibiotics, left hand slower for typing, left arm and neck often tired or with pain
possible inflammation of left plexus brachialis in 1985
weak muscle reflexes
deficient touch sensation in feet
memory disorder 2006-2010
slight atrophy of left hippocampus
flushing and hotness of face
occasional insomnia and distress
Inner medicine
hypothyroidism, Erfa Thyroid in use, low thyroid hormone values
low body temperature
primary hyperparathyroidism, S-D1,25 elevated
periodic diabetes insipidus?, dehydration
small and pale red cells
Respiratory system
tightness of small bronchioles
respiratory difficulties
small unknown infiltrations in lungs, they do not grow in size
Reproductive organs
endometriosis
myomata
endometrial polyps
mastopathy
childlessness
Digestive system
previously often diarrhea, not nowadays; Helicobacterium antibiotic tretament 2006
some antibiotics cause antibiotic diarrhea, treatment with lactic acid bacteria
tightness of upper abdomen during walking, upper abdomen distending
cholelithiasis and cholecystectomia in 2010
sometimes pain in upper abdomen
Muscles and bones
variable pain in variable muscles and joints, arthritis in several joints, reactive arthritis, HLA-B27 positive, negative rheumatic factor
muscle weakness, eg. in the neck and legs, sitting difficulty
muscle cramps and tightness, tight muscle fasciae
loose joint ligaments, knee meniscus torn
osteopenia in 2008, no longer
Infections
chronic tonsillitis, long crypts full of actinomycete-like material, no pain in tonsils, only referred pain to the left; chronic sinusitis with no or little tough discharge; postnasal drip
sore red flecks in varying sites in mouth mucosa, ”Sjoegren's syndrome” (sicca syndrome) without antibodies; sialadenitis
long-lasting coughs, asthma-like condition in 2006
sometimes oral trush; overgrown(?) papillae full of small granulae on back of tongue
bubbling, white saliva with leukocytes
Immune defence
low IgG3, low lectin pathway of complement
sore enlarged lymph node in neck, then calcified
ACE and lysozyme sometimes elevated, sometimes lymphocytosis, atypic lymphocytes, toxic granulae in neutrophils, TNF-alpha elevated
ear symptoms
often otitis when child, not when adult
tinnitus
vertigo in spring 2013
pain around the left ear (from lower corner to temple) in spring 2013, possibly referred pain from left tonsil
eye symptoms
cataract in right eye
nasty feeling behind eyes
light gleaming in shut eyes, when in bed
floaters
conjunctivitis in the inner corner of right eye
drooping lid of right eye
Heart and circulatory system
long lasting atrial fibrillations, need electric cardioversion
SVTs, extrasystoles, previously often tachycardia paroxyxmalis
high or variable blood pressure, previously sometimes POTS, atenolol in use
Integument
hair falling
a small neurodermatitis fleck
Of course my other diseases complicate the sitaution. I have not had treatment to Lyme.
Best Answer
Until I did some reading about Lyme and ganglion cysts just now, I was not aware that the cysts can indeed appear in someone with Lyme, and had not remember this message thread (which is now about 4 years old).
There are likely others out there who also have this issue, so you might consider starting a new thread with a title such as 'Ganglion cysts in Lyme'. That would likely catch the eye of a reader also interested in the topic; this thread we are on now is titled more generally 'Lyme or Not Lyme?', and may not be read fully.
There are likely others out there who also have this issue, so you might consider starting a new thread with a title such as 'Ganglion cysts in Lyme'. That would likely catch the eye of a reader also interested in the topic; this thread we are on now is titled more generally 'Lyme or Not Lyme?', and may not be read fully.
Sorry, I have been busy now.
Yesterday I saw a neurolgist and got Botox into my sternocleidomastoideus (due to dystonia). Today I saw a general practitoiner because of mouth problems and dysphagia. We also discussed on my possible Lyme disease.
The doctor listened to my symptoms and looked at me and said that I may have microinfarcts in my brain. My left facial nerve may not function properly, hee sees it clearly. (!) The neurologist did not say anything about such yesterday. The neurologist concentrated only to my dystonia. I was not allowed to speak about other disease. A couple of years ago another neurologist found some asymmetry in my face.
Microinfacts can be so small that they may not be seen in MRI, but the doctor thought that I could have them, because a few electric cardioversions have been done to me.
My nephew has Lyme and had a worse brain infarct. Could Lyme cause infarcts?
Can Lyme cause ganglion cysts? Last night I had pain in my left wrist - in in the morning there was a ganglion. Now I have pain in my right hand - can a ganglion be forming also there? Or do I have carpal tunnel syndrome due to hypothyroidism and being unedermedicated?
Yesterday I saw a neurolgist and got Botox into my sternocleidomastoideus (due to dystonia). Today I saw a general practitoiner because of mouth problems and dysphagia. We also discussed on my possible Lyme disease.
The doctor listened to my symptoms and looked at me and said that I may have microinfarcts in my brain. My left facial nerve may not function properly, hee sees it clearly. (!) The neurologist did not say anything about such yesterday. The neurologist concentrated only to my dystonia. I was not allowed to speak about other disease. A couple of years ago another neurologist found some asymmetry in my face.
Microinfacts can be so small that they may not be seen in MRI, but the doctor thought that I could have them, because a few electric cardioversions have been done to me.
My nephew has Lyme and had a worse brain infarct. Could Lyme cause infarcts?
Can Lyme cause ganglion cysts? Last night I had pain in my left wrist - in in the morning there was a ganglion. Now I have pain in my right hand - can a ganglion be forming also there? Or do I have carpal tunnel syndrome due to hypothyroidism and being unedermedicated?
... and, now that I read my post again, it appears that Leona GIlbert is also located at a university in Finland. Try both! Let us know if we can help -- and also how you do. Best wishes!
I just searched online for
--- ilads finland ---
and found some interesting items, including this --- the important part is the last three lines!
======================================
April, 2014
Advances In Pleomorphic Forms of Borrelia
Leona Gilbert, PhD
Lyme Disease is the most frequently reported tick-borne infection in North America and Europe and is endemic in many other areas in the world. Various in vitro studies confirm that B. burgdorferi sensu lato is pleomorphic in morphology. The bacteria can be seen in the parent spirochete form, cell wall deficient forms such as the cyst or L forms, round bodies, and spheroplasts, or blebs, and loops as well as biofilm colonies. Download → [the article can be downloaded from the internet, but not from this page -- this is not a 'live' or functioning link]
===>>> Written text by Leena Meriläinen, and Leona Gilbert from Department of Biological and Environmental Sciences and NanoScience Center, University of Jyväskylä, Jyväskylä, Finland
---------------------------------------------------------------------------
You may be able to find a wise Lyme physician in Finland by contacting Leena Merilainen.
--- ilads finland ---
and found some interesting items, including this --- the important part is the last three lines!
======================================
April, 2014
Advances In Pleomorphic Forms of Borrelia
Leona Gilbert, PhD
Lyme Disease is the most frequently reported tick-borne infection in North America and Europe and is endemic in many other areas in the world. Various in vitro studies confirm that B. burgdorferi sensu lato is pleomorphic in morphology. The bacteria can be seen in the parent spirochete form, cell wall deficient forms such as the cyst or L forms, round bodies, and spheroplasts, or blebs, and loops as well as biofilm colonies. Download → [the article can be downloaded from the internet, but not from this page -- this is not a 'live' or functioning link]
===>>> Written text by Leena Meriläinen, and Leona Gilbert from Department of Biological and Environmental Sciences and NanoScience Center, University of Jyväskylä, Jyväskylä, Finland
---------------------------------------------------------------------------
You may be able to find a wise Lyme physician in Finland by contacting Leena Merilainen.
Thanks for your taking care of me and for your encouraging post. I did not find it earlier. I am thinking of your suggestion. I already have the name of the doctor who is treating my relative's borreliosis.
My ear and neck muscle symptoms have been rare till now. Most of the summer was warm, that was good for me.
I can say that Dr. Oksi does not believe in chronic borreliosis. In early 2013, when I had some bad infections and atrial fibrillation, he said that I cannot have borreliosis, I cannot have Mycoplasma, I cannot have Cytomegalovirus etc. which I mentioned to him. I did not yet have the German Borrelia test result.
In late August I possibly had some virus infection. It caused rhythm disorders, somnolescence and abdominal symptoms. Then, on 1st September, I let my blood tested. My mean erythrocyte size ( MCV) had decreased to 79 (normal range 82-98) and the mean corpuscular hemoglobin content (MCH) had decreased to 26 (27-33). I had neutropenia and lymhocytosis (respective percents 32 and 59). I started to take iron supplement.
On last week I again had two ticks, one nymph and one larger tick. I have not got erythema but have many bruises. The cause may be too "thin" blood. Or could Borrelia cause bruises?
My brother had a tick and erythema around it. He got a two-week antibiotic (Amoxicillin).
My ear and neck muscle symptoms have been rare till now. Most of the summer was warm, that was good for me.
I can say that Dr. Oksi does not believe in chronic borreliosis. In early 2013, when I had some bad infections and atrial fibrillation, he said that I cannot have borreliosis, I cannot have Mycoplasma, I cannot have Cytomegalovirus etc. which I mentioned to him. I did not yet have the German Borrelia test result.
In late August I possibly had some virus infection. It caused rhythm disorders, somnolescence and abdominal symptoms. Then, on 1st September, I let my blood tested. My mean erythrocyte size ( MCV) had decreased to 79 (normal range 82-98) and the mean corpuscular hemoglobin content (MCH) had decreased to 26 (27-33). I had neutropenia and lymhocytosis (respective percents 32 and 59). I started to take iron supplement.
On last week I again had two ticks, one nymph and one larger tick. I have not got erythema but have many bruises. The cause may be too "thin" blood. Or could Borrelia cause bruises?
My brother had a tick and erythema around it. He got a two-week antibiotic (Amoxicillin).
Lyme is different in each person.
That is for several reasons, but one reason is that Lyme often comes with one or more other infections that have their own symptoms, and that confuses the medical people/doctors/physicians/dentists.
I just searched online for
-- finland lyme disease --
and found many promising links. Here are some clips from those search results:
===========================================
"I am joined by Docent Jarmo Oksi, Finland's leading researcher in the field of Lyme disease, who is based at the University of Turku in Finland."
===========================================
Helsingin Sanomat - International Edition - Home
May 15, 2012 - “On the west coast of Finland between Närpiö and Simo the ... Likewise, the number of cases of borreliosis or Lyme disease was up on the ..."
===========================================
Duodecim. 2011;127(13):1393-400.
[Insect-borne diseases and insect bites in Finland].
[Article in Finnish]
Seppänen M.
Clinically significant endemic, arthropod-borne infectious diseases in Finland include Lyme disease, tick-borne encephalitis, tularemia and Karelian fever. The diagnosis of early borreliosis or tularemia is clinical and the treatment is initiated already before the results of eventual blood tests. The diagnosis of late stage borreliosis, tick-borne encephalitis or Karelian fever is confirmed mainly with serologic tests. The clinical significance of endemic anaplasmosis, Rickettsia helvetica, Inkoo and Uukuniemi viruses as well as anthropod-borne bunyaviruses and bartonelloses is either minor or remains open.
PMID: 21834346 [PubMed - indexed for MEDLINE]
================================================
Re: Tick diseases in Finland - LymeNet Europe
www.lymeneteurope.org › ... › Information & Discussion › General
Aug 12, 2007 - 5 posts
================================================
Approximately two to three thousand people contract Lyme borreliosis in Finland annually. The disease is mostly mild and readily treatable with ...
Dr. Jarmo Oksi Proves Chronic Borreliosis by ... -- 2013
================================================
"Lyme Disease" in Various Languages - LymeNet Europe
2 posts -- 2011
More results from www.lymeneteurope.org
================================================
================================================
There are many options for you to explore -- The doctor you saw who did her "dissertation on Lyme (mouse model) and gave infectious diseases as one of her interests" sounds like a scientist and not a physician. But if she is a physician, she seems to have the same misunderstanding of Lyme that many other doctors do.
You say above: "I asked her opinion. She denied that I could have Lyme. According to her the German tests are poor. She was very firm, and she said that the tests are bereaving of patients' money."
There are many MDs in the US who deny that Lyme is significant and widespread, so we have that same battle here in the US. When I was very ill, I saw 20 doctors before one finally, in desperation, did a Lyme test on me. The test came back positive, but the doctor told me I "could not" have Lyme, but she could not explain the positive test. There are many doctors who think the tests are not accurate, but that is why a good Lyme doctor looks at the patient and not only at the test result: the test are not very accurate.
If I were you, I would NOT stop looking for a physician/doctor who takes Lyme seriously. The doctor you saw already sounds like many in the US -- but they are wrong, wrong, wrong. Keep looking for a Lyme doctor!
You could also email to
contact [at] ILADS.org
and tell them you need a Lyme doctor in or near [the name of your nearest large city] in Finland, and if ILADS has any member MDs there, they will send you the name. ILADS is the International Lyme and Associated Diseases Society, a voluntary group for physicians who understand how real and serious Lyme disease and its co-infections are.
Don't give up! Let us know how we can help. And do let us know how you are doing, okay?
That is for several reasons, but one reason is that Lyme often comes with one or more other infections that have their own symptoms, and that confuses the medical people/doctors/physicians/dentists.
I just searched online for
-- finland lyme disease --
and found many promising links. Here are some clips from those search results:
===========================================
"I am joined by Docent Jarmo Oksi, Finland's leading researcher in the field of Lyme disease, who is based at the University of Turku in Finland."
===========================================
Helsingin Sanomat - International Edition - Home
May 15, 2012 - “On the west coast of Finland between Närpiö and Simo the ... Likewise, the number of cases of borreliosis or Lyme disease was up on the ..."
===========================================
Duodecim. 2011;127(13):1393-400.
[Insect-borne diseases and insect bites in Finland].
[Article in Finnish]
Seppänen M.
Clinically significant endemic, arthropod-borne infectious diseases in Finland include Lyme disease, tick-borne encephalitis, tularemia and Karelian fever. The diagnosis of early borreliosis or tularemia is clinical and the treatment is initiated already before the results of eventual blood tests. The diagnosis of late stage borreliosis, tick-borne encephalitis or Karelian fever is confirmed mainly with serologic tests. The clinical significance of endemic anaplasmosis, Rickettsia helvetica, Inkoo and Uukuniemi viruses as well as anthropod-borne bunyaviruses and bartonelloses is either minor or remains open.
PMID: 21834346 [PubMed - indexed for MEDLINE]
================================================
Re: Tick diseases in Finland - LymeNet Europe
www.lymeneteurope.org › ... › Information & Discussion › General
Aug 12, 2007 - 5 posts
================================================
Approximately two to three thousand people contract Lyme borreliosis in Finland annually. The disease is mostly mild and readily treatable with ...
Dr. Jarmo Oksi Proves Chronic Borreliosis by ... -- 2013
================================================
"Lyme Disease" in Various Languages - LymeNet Europe
2 posts -- 2011
More results from www.lymeneteurope.org
================================================
================================================
There are many options for you to explore -- The doctor you saw who did her "dissertation on Lyme (mouse model) and gave infectious diseases as one of her interests" sounds like a scientist and not a physician. But if she is a physician, she seems to have the same misunderstanding of Lyme that many other doctors do.
You say above: "I asked her opinion. She denied that I could have Lyme. According to her the German tests are poor. She was very firm, and she said that the tests are bereaving of patients' money."
There are many MDs in the US who deny that Lyme is significant and widespread, so we have that same battle here in the US. When I was very ill, I saw 20 doctors before one finally, in desperation, did a Lyme test on me. The test came back positive, but the doctor told me I "could not" have Lyme, but she could not explain the positive test. There are many doctors who think the tests are not accurate, but that is why a good Lyme doctor looks at the patient and not only at the test result: the test are not very accurate.
If I were you, I would NOT stop looking for a physician/doctor who takes Lyme seriously. The doctor you saw already sounds like many in the US -- but they are wrong, wrong, wrong. Keep looking for a Lyme doctor!
You could also email to
contact [at] ILADS.org
and tell them you need a Lyme doctor in or near [the name of your nearest large city] in Finland, and if ILADS has any member MDs there, they will send you the name. ILADS is the International Lyme and Associated Diseases Society, a voluntary group for physicians who understand how real and serious Lyme disease and its co-infections are.
Don't give up! Let us know how we can help. And do let us know how you are doing, okay?
Does Lyme disease cause aphthae/canker sores? Today my dentist said, that I have an aphtha.
In a few past years I have had red patches in my mouth mucosa several times per year. There is a small whitish spot in the patch. The patches go and new ones appear. I have seen that always inflammation of the pharynx, then stomach an last the intestine takes place. I have not previously known what the patches are.
Now I have difficulties to swallow. There is pressure in the oesophaus, due to inflammation of the oeasophagus. Pills do not easily go down. Today I had a short diarrhea. I have also some infection/inflammation around my anus.
The difficult swallowing may also be caused by my infected left tonsil or left postnasal drip. Turning of my head to the left is also disfficult. I have also sore joints.
The cause of afthae is not usually known. How could I prevent them? Possibly there are no means to prevent their appearance.
In a few past years I have had red patches in my mouth mucosa several times per year. There is a small whitish spot in the patch. The patches go and new ones appear. I have seen that always inflammation of the pharynx, then stomach an last the intestine takes place. I have not previously known what the patches are.
Now I have difficulties to swallow. There is pressure in the oesophaus, due to inflammation of the oeasophagus. Pills do not easily go down. Today I had a short diarrhea. I have also some infection/inflammation around my anus.
The difficult swallowing may also be caused by my infected left tonsil or left postnasal drip. Turning of my head to the left is also disfficult. I have also sore joints.
The cause of afthae is not usually known. How could I prevent them? Possibly there are no means to prevent their appearance.
There are two types of Lyme test: one (an indirect test) looks for your immune system's reaction to the presence of Lyme bacteria; the other (a direct test) looks for small sections of the DNA of Lyme bacteria.
The indirect test can indicate that you are not infected, but Lyme has the ability to suppress the immune system reaction, and without that reaction, the indirect test can show negative, but be wrong.
The direct test is considered more accurate by Lyme specialists, to my understanding.
The indirect test can indicate that you are not infected, but Lyme has the ability to suppress the immune system reaction, and without that reaction, the indirect test can show negative, but be wrong.
The direct test is considered more accurate by Lyme specialists, to my understanding.
Just thinking of the German LTT test: If my T lymphocytes in a test tube can actively faight against Borrelia, are they namely memory cells that remember some Borrelia antigen met in the saliva of a tick? How long do the memory cells live and how long do they remember their contact with Borrelia? When the cells are again put together with Borrelia antigens, the cells soon (how soon?) become activated. I don't know the test mechanisms. Is there some difference how actively the cells faight if they have a Borrelia mark from a distant past time contact or from a recent contact?
Many doctors here think that 'chronic Lyme disease' is only a mark of a previous Borrelia contact or a disease which has been cured. I think that the German laboratory stresses that if the cells become active, the person can currently have Lyme disease.
If Borrelia-marked memory cells live only a short time, then, without recent or current contact, T cells probably need a longer time to become active.
Am I wrong to think so?
Many doctors here think that 'chronic Lyme disease' is only a mark of a previous Borrelia contact or a disease which has been cured. I think that the German laboratory stresses that if the cells become active, the person can currently have Lyme disease.
If Borrelia-marked memory cells live only a short time, then, without recent or current contact, T cells probably need a longer time to become active.
Am I wrong to think so?
I think it was a little less than a year that I was taking antibiotics, but I can't find my notes at the moment. Perhaps a total of 10 months? Not sure now.
I had Lyme and babesiosis (which is similar to malaria). The babesia was treated first, for a period of several months, and then the Lyme for several more months.
Lyme bacteria are in the same family as the bacteria that cause syphilis. If you are not familiar with the terrible effects of untreated syphilis, then you might want to read about it. I do not know if untreated syphilis is worse than untreated Lyme, but I would definitely get treated. Just because the bacteria are quiet does not mean they are not causing harm now and in the future. Lyme is a very serious infection.
I had Lyme and babesiosis (which is similar to malaria). The babesia was treated first, for a period of several months, and then the Lyme for several more months.
Lyme bacteria are in the same family as the bacteria that cause syphilis. If you are not familiar with the terrible effects of untreated syphilis, then you might want to read about it. I do not know if untreated syphilis is worse than untreated Lyme, but I would definitely get treated. Just because the bacteria are quiet does not mean they are not causing harm now and in the future. Lyme is a very serious infection.
You wrote: "I was treated first for babesiosis, and when that treatment was done, I was then treated for Lyme. Treatment lasted about a year, but was very worthwhile. I remain healthy today, some 7 years later ..."
- How did they treat your Lyme for a year?
I don't want to travel to Germany for full dignosis. Now I am in such a situation that I don't know whether I truely have Lyme or not. It does not, however, bother me very much, as it at first did. Later, it might be possible to write to a LLMD.
- How did they treat your Lyme for a year?
I don't want to travel to Germany for full dignosis. Now I am in such a situation that I don't know whether I truely have Lyme or not. It does not, however, bother me very much, as it at first did. Later, it might be possible to write to a LLMD.
I just searched on google for -- LLMD Germany -- and there were many interesting possibilities. I would find an LLMD for full diagnosis (Lyme and any co-infections) so that treatment can begin. Unfortunately Lyme is similar to syphilis and does not go away by itself.
I am thankful for all Lyme information here in Lyme community.
Update:
Recently I wanted to see a doctor in the nearest city. She had written her dissertation on Lyme (mouse model) and gave infectious diseases as one of her interests.
I asked her opinion. She denied that I could have Lyme. According to her the German tests are poor. She was very firm, and she said that the tests are bereaving of patients' money.
She said that I should not start Kefexin, because it can cause antibiotic diarrhea. She said that the tonsils should instead be taken away. I am afraid of the possille future tonsillectomia (at 66 years' age, with immune deficiency and being apt to rhythm disorders - and possibly with Lyme).
I have no urgency to start any antibiotic, I am in a better condition now. I should only adjust my thyroid medication. I have 20 pills of Kefexin at home, and I know that there is at least one LLMD in another city. Thus I can stay calm and see how things will go.
Update:
Recently I wanted to see a doctor in the nearest city. She had written her dissertation on Lyme (mouse model) and gave infectious diseases as one of her interests.
I asked her opinion. She denied that I could have Lyme. According to her the German tests are poor. She was very firm, and she said that the tests are bereaving of patients' money.
She said that I should not start Kefexin, because it can cause antibiotic diarrhea. She said that the tonsils should instead be taken away. I am afraid of the possille future tonsillectomia (at 66 years' age, with immune deficiency and being apt to rhythm disorders - and possibly with Lyme).
I have no urgency to start any antibiotic, I am in a better condition now. I should only adjust my thyroid medication. I have 20 pills of Kefexin at home, and I know that there is at least one LLMD in another city. Thus I can stay calm and see how things will go.
Lyme can suppress the immune system over time, but most doctors either don't know this or refuse to believe it. Lyme definitely causes chronic sore throats and heart rhythm problems. I've had an irregular heart beat for well over 2 years, although it's much better now with treatment. I also had significant tachycardia for a while.
Cephalosporins are great for treating Lyme. The first choice for neuro Lyme is Rocephin. The IDSA actually admits that in some patients with cardiac or neuro symptoms, the Doxy is insufficient. Such patients need IV treatment. Perhaps you could find such documentation online and show it to your doctor. Your ongoing cardiac symptoms should be enough to justify it.
Of course, even if he did, he would only give you a month's worth. It would be a good start to your treatment, though. You're right that a long term Lyme infection will not go easily. You'll need to find a LLMD who will treat you until you're well.
Cephalosporins are great for treating Lyme. The first choice for neuro Lyme is Rocephin. The IDSA actually admits that in some patients with cardiac or neuro symptoms, the Doxy is insufficient. Such patients need IV treatment. Perhaps you could find such documentation online and show it to your doctor. Your ongoing cardiac symptoms should be enough to justify it.
Of course, even if he did, he would only give you a month's worth. It would be a good start to your treatment, though. You're right that a long term Lyme infection will not go easily. You'll need to find a LLMD who will treat you until you're well.
Yesterday I saw a doctor ("infection doctor"). He had a one-second-lasting glance on the German results. He has the opinion, that I may have had Lyme. Becaue I have got Doxy treatments, the disease is no more active, instead there is only a mark about it.
Because my chronic tonsillitis still causes some symptoms, I should continue an antibiotic. Tonsillectomia would be the best treatment, but I have contraindications to it (immune deficiency, sensitivity to heart rhythm disorders). The antibiotic must be changed, it will be a cephalosporin (Kefexin). This antibiotic may cause antibiotic diarrhea. If I get diarrhea, I should soon go to test it.
Do you think that cephalosporins are effective also against the possible chronic lyme? If I have Lyme, I think that it will not easily go away.
I do not start the atibiotic yet. I'll wait and see whether my symptoms become worse. And I'll read more about Lyme and its treatment.
Because my chronic tonsillitis still causes some symptoms, I should continue an antibiotic. Tonsillectomia would be the best treatment, but I have contraindications to it (immune deficiency, sensitivity to heart rhythm disorders). The antibiotic must be changed, it will be a cephalosporin (Kefexin). This antibiotic may cause antibiotic diarrhea. If I get diarrhea, I should soon go to test it.
Do you think that cephalosporins are effective also against the possible chronic lyme? If I have Lyme, I think that it will not easily go away.
I do not start the atibiotic yet. I'll wait and see whether my symptoms become worse. And I'll read more about Lyme and its treatment.
Good! Glad to hear you are getting medical attention. The Finns I have met are all solid, sensible people -- if only the U.S. were as thoughtful about tick mapping studies as Finland is! There is much ignorance in the US medical community about Lyme, and we the patients pay the price for a long, long time.
Please let us know what you find out and how you do! Best wishes --
Please let us know what you find out and how you do! Best wishes --
I appreciate your thorough answers and information. The information can help many people who are in a similar situation.
I have used also S. boullardi (named Precosa). I didn't remember its name when I was writing my previous comment.
I found that at least Babesia and Rickettsia have occurred in Finnish people.
As to ticks here, they were common during my childhood, which I spent in central Finland at the fifties. People (including me) had them in their skin, also cats and cows had them. I know one person who has had neuroborreliosis in 1996. Because he got treatment too late, some neurological defects remained.
Now there is a tick mapping study going in Finland.
By the way, tomorrow I'll see a doctor.
I have used also S. boullardi (named Precosa). I didn't remember its name when I was writing my previous comment.
I found that at least Babesia and Rickettsia have occurred in Finnish people.
As to ticks here, they were common during my childhood, which I spent in central Finland at the fifties. People (including me) had them in their skin, also cats and cows had them. I know one person who has had neuroborreliosis in 1996. Because he got treatment too late, some neurological defects remained.
Now there is a tick mapping study going in Finland.
By the way, tomorrow I'll see a doctor.
About thyroid supplements: Lyme disease has many effects on the endocrine system, and the thyroid is part of that. Everyone with Lyme is different in the symptoms they have, partly because of individual body chemistry and party because the mix of infections from the Lyme ticks acts differently on each person's immune system. That is partly why the physicians are so confused: they are accustomed to a single set of symptoms in a particular illness, but Lyme and its co-infections do not operate that way. Also, as treatment progresses, thyroid function (if suppressed) can come back to normal, which happened to me very quickly, so it is a moving target. I would not change the medication without consulting with your physician, to be on the safe side.
You say: "When I was on a previous antibiotic (4-week Doxycycline), I first felt better, but on the last week the symptoms returned." Doxycycline ('Doxy') is, to my understanding, useful only in the early stages of a Lyme infection, because after a short time, the Lyme bacteria migrate into cartilage and other places in the body where the immune system does not reach because of low blood flow. Without strong blood flow to the areas where the bacteria hide, the medication cannot reach the bacteria to kill them. The bacteria are also able to create slimy shields called 'biofilms' that shield the bacteria from the antibiotics. My Lyme doctor and many others do not use Doxy except very early in a Lyme infection, and instead use other antibiotics in combination against Lyme, one medication to break open the cyst-like shields that Lyme bacteria hide in and another medication to then kill the bacteria.
In addition, co-infections (babesia, bartonella, etc) often do not respond at all to doxy, and different medication is needed. First one needs to know what infections are present, and then a treatment plan can be devised. All the more reason to find a Lyme specialist.
You say: "I was not in Germany but my blood was sent there for analysis. The doctor who arranged the prescription did not put any other possible infective organisms to it than Borrelia and Chlamydia pneumoniae - although I said that now, when we send my blood to Germany, we should test all relevant organisms." Good! A knowledgeable physician can know what to test for, based on your symptoms, without having to test ($$$) for everything.
You say: "I think that I can have at least Mycoplasma. I don't know whether Bartonella and others occur in Finnish ticks." A Lyme specialist will, based on your history and symptoms, know what to test for. I am fond of saying that 'ticks can't read maps', so they are in places that the medical community claims is Lyme-free.
"Because I can get antibiotic diarrhea from some antibiotics, I am afraid of antibiotics." You are right to be concerned, and supplementing with probiotics is a good thing to do. My LLMD instructed the use of a probiotic (generic name: Saccharomyces boulardii, brand name: Florastor) that is itself not affected by the presence of antibiotics, so it can be taken at any time without regard to the dosing time of antibiotics. I did not do well with Florastor (I seem to have a sensitivity to fungus, which S. boulardii is), so I went back to regular lactobacillus-type probiotics, which are killed by antibiotics, but must be taken several hours apartment from the antibiotics.
Thus taking a probiotic is a good thing, but depending on what kind you take, you may need to schedule a gap of several hours between taking the probiotic and the antibiotic. Your pharmacist or physician could advise on that point.
About thyroid medication, that is again a question for your physician. I was on thyroid supplements for a time, but then did not need them anymore. Lyme etc. create problems in the whole hormone area, so having a physician who is watching your rising and falling hormone levels is important.
You say: "When I was on a previous antibiotic (4-week Doxycycline), I first fealt better, but on the last week the symptoms returned. Then I had two-week's pause before the 9 day antibiotic." Lyme bacteria have a very slow reproductive cycle compared to other bacteria, which reproduce every 20 minutes or so. In contrast, Lyme reproduce on a schedule of hours and days. I just found a website called 'Lady of Lyme' that describes one person's observations of the slow life cycle Lyme has. It is when reproducing that bacteria are most vulnerable to being killed, but 'cyst-busting' medications can also help, such as Flagyl. I was on two antibiotics: one to break open the cysts, and the other to kill the bacteria inside, and that is a common approach by LLMDs here in the US.
You say, "Because I can get antibiotic diarrhea from some antibiotics, I am afraid of antibiotics. Doxycycline is one which does not generally often cause diarrhea." This is why my LLMD required the use of probiotics, and why he prefers the use of Florastor/S.boulardii, although ordinary probiotics will do if taken several hours away from the antibiotics. Your pharmacist (the English say 'chemist') can perhaps advise you on what types may be helpful. As mentioned above, although doxy does not give you diarrhea, it may well be ineffective against the cystic form of Lyme (a stage which all Lyme goes through periodically) and also again non-Lyme co-infections. Doxy works best immediately after a Lyme infection begins, but not later when the Lyme bacteria hide in cysts/biofilms in the body.
You may be able to find a friendly LLMD in Finland who simply stays quiet and is not well known. If you go to the ILADS website, they may be able to refer you to someone near you.
Best wishes, and do let us know how you are doing --
You say: "When I was on a previous antibiotic (4-week Doxycycline), I first felt better, but on the last week the symptoms returned." Doxycycline ('Doxy') is, to my understanding, useful only in the early stages of a Lyme infection, because after a short time, the Lyme bacteria migrate into cartilage and other places in the body where the immune system does not reach because of low blood flow. Without strong blood flow to the areas where the bacteria hide, the medication cannot reach the bacteria to kill them. The bacteria are also able to create slimy shields called 'biofilms' that shield the bacteria from the antibiotics. My Lyme doctor and many others do not use Doxy except very early in a Lyme infection, and instead use other antibiotics in combination against Lyme, one medication to break open the cyst-like shields that Lyme bacteria hide in and another medication to then kill the bacteria.
In addition, co-infections (babesia, bartonella, etc) often do not respond at all to doxy, and different medication is needed. First one needs to know what infections are present, and then a treatment plan can be devised. All the more reason to find a Lyme specialist.
You say: "I was not in Germany but my blood was sent there for analysis. The doctor who arranged the prescription did not put any other possible infective organisms to it than Borrelia and Chlamydia pneumoniae - although I said that now, when we send my blood to Germany, we should test all relevant organisms." Good! A knowledgeable physician can know what to test for, based on your symptoms, without having to test ($$$) for everything.
You say: "I think that I can have at least Mycoplasma. I don't know whether Bartonella and others occur in Finnish ticks." A Lyme specialist will, based on your history and symptoms, know what to test for. I am fond of saying that 'ticks can't read maps', so they are in places that the medical community claims is Lyme-free.
"Because I can get antibiotic diarrhea from some antibiotics, I am afraid of antibiotics." You are right to be concerned, and supplementing with probiotics is a good thing to do. My LLMD instructed the use of a probiotic (generic name: Saccharomyces boulardii, brand name: Florastor) that is itself not affected by the presence of antibiotics, so it can be taken at any time without regard to the dosing time of antibiotics. I did not do well with Florastor (I seem to have a sensitivity to fungus, which S. boulardii is), so I went back to regular lactobacillus-type probiotics, which are killed by antibiotics, but must be taken several hours apartment from the antibiotics.
Thus taking a probiotic is a good thing, but depending on what kind you take, you may need to schedule a gap of several hours between taking the probiotic and the antibiotic. Your pharmacist or physician could advise on that point.
About thyroid medication, that is again a question for your physician. I was on thyroid supplements for a time, but then did not need them anymore. Lyme etc. create problems in the whole hormone area, so having a physician who is watching your rising and falling hormone levels is important.
You say: "When I was on a previous antibiotic (4-week Doxycycline), I first fealt better, but on the last week the symptoms returned. Then I had two-week's pause before the 9 day antibiotic." Lyme bacteria have a very slow reproductive cycle compared to other bacteria, which reproduce every 20 minutes or so. In contrast, Lyme reproduce on a schedule of hours and days. I just found a website called 'Lady of Lyme' that describes one person's observations of the slow life cycle Lyme has. It is when reproducing that bacteria are most vulnerable to being killed, but 'cyst-busting' medications can also help, such as Flagyl. I was on two antibiotics: one to break open the cysts, and the other to kill the bacteria inside, and that is a common approach by LLMDs here in the US.
You say, "Because I can get antibiotic diarrhea from some antibiotics, I am afraid of antibiotics. Doxycycline is one which does not generally often cause diarrhea." This is why my LLMD required the use of probiotics, and why he prefers the use of Florastor/S.boulardii, although ordinary probiotics will do if taken several hours away from the antibiotics. Your pharmacist (the English say 'chemist') can perhaps advise you on what types may be helpful. As mentioned above, although doxy does not give you diarrhea, it may well be ineffective against the cystic form of Lyme (a stage which all Lyme goes through periodically) and also again non-Lyme co-infections. Doxy works best immediately after a Lyme infection begins, but not later when the Lyme bacteria hide in cysts/biofilms in the body.
You may be able to find a friendly LLMD in Finland who simply stays quiet and is not well known. If you go to the ILADS website, they may be able to refer you to someone near you.
Best wishes, and do let us know how you are doing --
I am glad for your successful treatment.
You said: "I was put on thyroid supplements when Lyme treatment (with antibiotics) was begun, but as soon as the medication began to work, I did not need the thyroid medication any more at all." - I have wondered, why I do not have bad symptoms although my thyroid hormone values are poor (the supplementation was decreased in 2013). And why it is difficult to increase my medication back? I have thought that the hormones go better into my cells. Should I, however, increase my thyroid medication? I have used thyroid supplementation for over 7 years, and my thyroid gland has shrunk to very small. Possibly there is no own function.
You said about Lyme treatment:"Everyone is different in this regard, but I never felt worse on medication than I did before medication. Instead, I just gradually felt better over time, always better." - When I was on a previous antibiotic (4-week Doxycycline), I first fealt better, but on the last week the symptoms returned. Then I had two-week's pause before the 9 day antibiotic.
I was not in Germany but my blood was sent there for analysis. The doctor who arranged the prescription did not put any other possible infective organisms to it than Borrelia an Chalmydia pneumoniae - although I said that now, when we send my blood to Germany, we should test all relevant organisms. I think that I can have at least Mycoplasma. I don't know whether Bartonella and others occur in Finnish ticks.
Because I can get antibiotic diarrhea from some antibiotics, I am afraid of antibiotics. Doxycycline is one which does not generally often cause diarrhea. I should pay all the Lyme treatment myself (I have no insurance, and the German results are not accepted in Finland). Treatment in Augsburg or elsewhere abroad may be very expensive.
You said: "I was put on thyroid supplements when Lyme treatment (with antibiotics) was begun, but as soon as the medication began to work, I did not need the thyroid medication any more at all." - I have wondered, why I do not have bad symptoms although my thyroid hormone values are poor (the supplementation was decreased in 2013). And why it is difficult to increase my medication back? I have thought that the hormones go better into my cells. Should I, however, increase my thyroid medication? I have used thyroid supplementation for over 7 years, and my thyroid gland has shrunk to very small. Possibly there is no own function.
You said about Lyme treatment:"Everyone is different in this regard, but I never felt worse on medication than I did before medication. Instead, I just gradually felt better over time, always better." - When I was on a previous antibiotic (4-week Doxycycline), I first fealt better, but on the last week the symptoms returned. Then I had two-week's pause before the 9 day antibiotic.
I was not in Germany but my blood was sent there for analysis. The doctor who arranged the prescription did not put any other possible infective organisms to it than Borrelia an Chalmydia pneumoniae - although I said that now, when we send my blood to Germany, we should test all relevant organisms. I think that I can have at least Mycoplasma. I don't know whether Bartonella and others occur in Finnish ticks.
Because I can get antibiotic diarrhea from some antibiotics, I am afraid of antibiotics. Doxycycline is one which does not generally often cause diarrhea. I should pay all the Lyme treatment myself (I have no insurance, and the German results are not accepted in Finland). Treatment in Augsburg or elsewhere abroad may be very expensive.
"In Finland there are few doctors who believe in chronic Lyme."
We can say the same about the U.S. There is a split in the medical community here about whether Lyme is serious or not, whether it is widespread or not, how to test for it, how to diagnose it, and how (and how long) to treat it!
We certainly understand you situation, and I am sorry to hear it is the same as in the US. Your last sentence above, "Doctors say that my situation is problematic and challenging, but they do not know what is wrong with me", echoes what I was told by the 20th doctor I saw: "I know you are sick, but I do not know what it is." So for what comfort it is worth, you are not alone in all this.
In the U.S., there are doctors (physicians) who know how to test, diagnosis and treat Lyme and its co-infections, but they can be hard to find sometimes, partly because the local and state medical boards here often have the same attitude as the Finnish doctors: your "situation is problematic and challenging, but they do not know what is wrong with me."
We can often find a physician who have an open mind here, especially in some states, and I was treated by one of them. If you cannot locate such a free-thinking physician in Finland, then Augsburg may be a good alternative.
To my understanding, Lyme can indeed affect the endocrine system, including thyroid function. I was put on thyroid supplements when Lyme treatment (with antibiotics) was begun, but as soon as the medication began to work, I did not need the thyroid medication any more at all.
You could try to find an open-minded, progressive physician in Finland by emailing to ILADS.org, by sending an email to 'contact' at ILADS.org. Tell them where you are located and how far you can travel, and they can send you the names of Lyme specialists near you. Augsburg may indeed be the best option, but it cannot hurt to ask if there is someone closer to Finland who simply keeps a low profile so that the 'authorities' do not cause him/her trouble.
You say above: "I know one doctor in another Finnish city who could give intravenous antibiotics for Lyme." Intravenous treatment may not be necessary. The first steps are to know what infection(s) you have, so that the appropriate medication can be given.
You also say: "I have got lots of antibiotics due to chronic tonsillitis and sinusitis. The last one was stopped because an ENT Doctor said that it does not help. The symptoms increased and became worse. I myself think that I had Herxheimer reactions." The ENT doctor may have been correct IF the medication is not one to which your infection(s) respond, but if you felt worse, then I would agree that you were perhaps having a Herxheimer reaction. I had very little 'Herxing', but it is individual, and some people have it much worse.
You say, "My problem is how to know that I really have Lyme. The doctor in another city said, that it can only be tested with special intravenous antibiotics directed to Lyme." I am not medically trained, but it is not always necessary to have intravenous antibiotics to treat Lyme and any co-infections. My LLMD (who is well known in the field) used only oral antibiotics to treat me.
You say, "I know that the treatment will be strenuous. I wonder, how I could stand it." Everyone is different in this regard, but I never felt worse on medication than I did before medication. Instead, I just gradually felt better over time, always better.
You say, "Moreover, I just now have less symptoms, possibly thanks to the last antibiotic (Doxycycline 150 mg per day, 9 days in March)." That may be true. Be aware however that doxycycline is most useful in a very recent Lyme infection, and if you have a long-established infection, the Lyme bacteria can hide in areas of the body where the doxycycline is not very effective (such as joints and cartilage, and also other areas of low blood flow where the usual antibiotics such as doxycycline may not penetrate). My LLMD never gave me doxycycline, because I was past the early stages of infection. Thus different antibiotics were required.
Also be aware that if you have any other, additional infections that came from the Lyme tick (such as babesiosis, bartonella, and a few others), those infections may need completely different medication from Lyme disease. I was treated first for babesiosis, and when that treatment was done, I was then treated for Lyme. Treatment lasted about a year, but was very worthwhile. I remain healthy today, some 7 years later ...
... and I wish the same for you! Please let us know how we can help.
Best wishes to you, our new friend in Suomi!
We can say the same about the U.S. There is a split in the medical community here about whether Lyme is serious or not, whether it is widespread or not, how to test for it, how to diagnose it, and how (and how long) to treat it!
We certainly understand you situation, and I am sorry to hear it is the same as in the US. Your last sentence above, "Doctors say that my situation is problematic and challenging, but they do not know what is wrong with me", echoes what I was told by the 20th doctor I saw: "I know you are sick, but I do not know what it is." So for what comfort it is worth, you are not alone in all this.
In the U.S., there are doctors (physicians) who know how to test, diagnosis and treat Lyme and its co-infections, but they can be hard to find sometimes, partly because the local and state medical boards here often have the same attitude as the Finnish doctors: your "situation is problematic and challenging, but they do not know what is wrong with me."
We can often find a physician who have an open mind here, especially in some states, and I was treated by one of them. If you cannot locate such a free-thinking physician in Finland, then Augsburg may be a good alternative.
To my understanding, Lyme can indeed affect the endocrine system, including thyroid function. I was put on thyroid supplements when Lyme treatment (with antibiotics) was begun, but as soon as the medication began to work, I did not need the thyroid medication any more at all.
You could try to find an open-minded, progressive physician in Finland by emailing to ILADS.org, by sending an email to 'contact' at ILADS.org. Tell them where you are located and how far you can travel, and they can send you the names of Lyme specialists near you. Augsburg may indeed be the best option, but it cannot hurt to ask if there is someone closer to Finland who simply keeps a low profile so that the 'authorities' do not cause him/her trouble.
You say above: "I know one doctor in another Finnish city who could give intravenous antibiotics for Lyme." Intravenous treatment may not be necessary. The first steps are to know what infection(s) you have, so that the appropriate medication can be given.
You also say: "I have got lots of antibiotics due to chronic tonsillitis and sinusitis. The last one was stopped because an ENT Doctor said that it does not help. The symptoms increased and became worse. I myself think that I had Herxheimer reactions." The ENT doctor may have been correct IF the medication is not one to which your infection(s) respond, but if you felt worse, then I would agree that you were perhaps having a Herxheimer reaction. I had very little 'Herxing', but it is individual, and some people have it much worse.
You say, "My problem is how to know that I really have Lyme. The doctor in another city said, that it can only be tested with special intravenous antibiotics directed to Lyme." I am not medically trained, but it is not always necessary to have intravenous antibiotics to treat Lyme and any co-infections. My LLMD (who is well known in the field) used only oral antibiotics to treat me.
You say, "I know that the treatment will be strenuous. I wonder, how I could stand it." Everyone is different in this regard, but I never felt worse on medication than I did before medication. Instead, I just gradually felt better over time, always better.
You say, "Moreover, I just now have less symptoms, possibly thanks to the last antibiotic (Doxycycline 150 mg per day, 9 days in March)." That may be true. Be aware however that doxycycline is most useful in a very recent Lyme infection, and if you have a long-established infection, the Lyme bacteria can hide in areas of the body where the doxycycline is not very effective (such as joints and cartilage, and also other areas of low blood flow where the usual antibiotics such as doxycycline may not penetrate). My LLMD never gave me doxycycline, because I was past the early stages of infection. Thus different antibiotics were required.
Also be aware that if you have any other, additional infections that came from the Lyme tick (such as babesiosis, bartonella, and a few others), those infections may need completely different medication from Lyme disease. I was treated first for babesiosis, and when that treatment was done, I was then treated for Lyme. Treatment lasted about a year, but was very worthwhile. I remain healthy today, some 7 years later ...
... and I wish the same for you! Please let us know how we can help.
Best wishes to you, our new friend in Suomi!
Thank you for your answers.
In Finland there are few doctors who believe in chronic Lyme. Oksi, as most others, does not belong to them. He has said to me that I cannot have Lyme, Mycoplasma or other infectious diseases. I did not yet have the German results to show to him.
My Finnish antibody tests of Borrelia have been negative. Here exists a debate about Lyme. Doctors think that German Borrelia tests are too accurate. Many people go to Augsburg to receive Lyme treatment.
I know one doctor in another Finnish city who could give intravenous antibiotics for Lyme. I have got lots of antibiotics due to chronic tonsillitis and sinusitis. The last one was stopped because an ENT Doctor said that it does not help. The symptoms increased and became worse. I myself think that I had Herxheimer reactions.
My problem is how to know that I really have Lyme. The doctor in another city said, that it can only be tested with special intravenous antibiotics directed to Lyme. I know that the treatment will be strenuous. I wonder, how I could stand it. Moreover, I just now have less symptoms, possibly thanks to the last antibiotic (Doxycycline 150 mg per day, 9 days in March).
Here in Finland we have a community named Suomen Lyme Borrelioosi, where I can find much knowledge about Lyme. And I shall get acquainted with the data kindly given by JackieCalifornia.
My thyroid medication is difficult to adjust, because I do not know whether my symptoms are due to hypothyroidism or Lyme. It is needless to change often my thyroid treatment if the varying symptoms are caused by Lyme. Doctors say that my situation is problematic and challenging, but they do not know what is wrong with me.
In Finland there are few doctors who believe in chronic Lyme. Oksi, as most others, does not belong to them. He has said to me that I cannot have Lyme, Mycoplasma or other infectious diseases. I did not yet have the German results to show to him.
My Finnish antibody tests of Borrelia have been negative. Here exists a debate about Lyme. Doctors think that German Borrelia tests are too accurate. Many people go to Augsburg to receive Lyme treatment.
I know one doctor in another Finnish city who could give intravenous antibiotics for Lyme. I have got lots of antibiotics due to chronic tonsillitis and sinusitis. The last one was stopped because an ENT Doctor said that it does not help. The symptoms increased and became worse. I myself think that I had Herxheimer reactions.
My problem is how to know that I really have Lyme. The doctor in another city said, that it can only be tested with special intravenous antibiotics directed to Lyme. I know that the treatment will be strenuous. I wonder, how I could stand it. Moreover, I just now have less symptoms, possibly thanks to the last antibiotic (Doxycycline 150 mg per day, 9 days in March).
Here in Finland we have a community named Suomen Lyme Borrelioosi, where I can find much knowledge about Lyme. And I shall get acquainted with the data kindly given by JackieCalifornia.
My thyroid medication is difficult to adjust, because I do not know whether my symptoms are due to hypothyroidism or Lyme. It is needless to change often my thyroid treatment if the varying symptoms are caused by Lyme. Doctors say that my situation is problematic and challenging, but they do not know what is wrong with me.
Welcome to MedHelp Lyme --
I am sorry you have been through so much!
Have you located a physician who specializes in Lyme disease? That would be my first suggestion.
I just searched online (via google) for the phrase:
finland lyme disease
and there were many links. There seems to be an awareness among the medical and scientific community in Finland that Lyme is present and significant.
Here are some of the results from that search, if you have not located them already (some of the links are partial, but may give you enough key words to do a search to locate the article in question):
=========================
[Insect-borne diseases and insect bites in Finland].
Clinically significant endemic, arthropod-borne infectious diseases in Finland include Lyme disease, tick-borne encephalitis, tularemia and Karelian fever.
www.ncbi.nlm.nih.gov/.../2...
National Center for Biotechnology Information
=========================
TOUCHED BY LYME: Tick-borne illnesses in Finland
lymedisease.org/.../lyme_disease.../ti...
California Lyme Disease Association
=========================
Apr 28, 2013 - Guest blogger C.M. Rubin interviews two European scientists about the prevalence of Lyme disease and other tick-borne infections in Finland.
-- C. M. Rubin: The Global Search for Education: Finland -- Ticks
www.huffingtonpost.com/c-m-rubin/western-blot-test_b_3151241.html
=========================
Apr 25, 2013 - "I am joined by Docent Jarmo Oksi, Finland's leading researcher in the field of Lyme disease, who is based at the University of Turku in Finland."
=========================
-- Bannwarth's syndrome and Lyme disease in Finland.
www.ncbi.nlm.nih.gov/.../3...
National Center for Biotechnology Information
by J Kovanen - 1986 - Cited by 8 - Related articles
Scand J Infect Dis. 1986;18(5):421-4. Bannwarth's syndrome and Lyme disease in Finland. Kovanen J, Schauman K, Valpas J. Three patients with lymphocytic ...
=========================
-- [Insect-borne diseases and insect bites in Finland].
www.ncbi.nlm.nih.gov/...
National Center for Biotechnology Information
by M Seppänen - 2011 - Cited by 1 - Related articles
===============================================
===============================================
Please let us know how we can help --
I am sorry you have been through so much!
Have you located a physician who specializes in Lyme disease? That would be my first suggestion.
I just searched online (via google) for the phrase:
finland lyme disease
and there were many links. There seems to be an awareness among the medical and scientific community in Finland that Lyme is present and significant.
Here are some of the results from that search, if you have not located them already (some of the links are partial, but may give you enough key words to do a search to locate the article in question):
=========================
[Insect-borne diseases and insect bites in Finland].
Clinically significant endemic, arthropod-borne infectious diseases in Finland include Lyme disease, tick-borne encephalitis, tularemia and Karelian fever.
www.ncbi.nlm.nih.gov/.../2...
National Center for Biotechnology Information
=========================
TOUCHED BY LYME: Tick-borne illnesses in Finland
lymedisease.org/.../lyme_disease.../ti...
California Lyme Disease Association
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Apr 28, 2013 - Guest blogger C.M. Rubin interviews two European scientists about the prevalence of Lyme disease and other tick-borne infections in Finland.
-- C. M. Rubin: The Global Search for Education: Finland -- Ticks
www.huffingtonpost.com/c-m-rubin/western-blot-test_b_3151241.html
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Apr 25, 2013 - "I am joined by Docent Jarmo Oksi, Finland's leading researcher in the field of Lyme disease, who is based at the University of Turku in Finland."
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-- Bannwarth's syndrome and Lyme disease in Finland.
www.ncbi.nlm.nih.gov/.../3...
National Center for Biotechnology Information
by J Kovanen - 1986 - Cited by 8 - Related articles
Scand J Infect Dis. 1986;18(5):421-4. Bannwarth's syndrome and Lyme disease in Finland. Kovanen J, Schauman K, Valpas J. Three patients with lymphocytic ...
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-- [Insect-borne diseases and insect bites in Finland].
www.ncbi.nlm.nih.gov/...
National Center for Biotechnology Information
by M Seppänen - 2011 - Cited by 1 - Related articles
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The sentence above is not clear and should read: "I went back to regular lactobacillus-type probiotics, which are killed by antibiotics, and so must be taken several hours apart from the antibiotics."
And about doxy: it is not particularly effective against many of the common co-infections carried by the 'Lyme' ticks, so it is important to know what infections you have so that the right medications can be given.