Aa
Lyme or not? Need your advise.
Hi Everyone!
I need your expert advice. I have some symptoms and do not know what they can be related to. I was thinking about MS or Lyme. I know Lyme is super hard to diagnose. The thing is that I do not remember any early stage Lyme disease e.g. flu-like symptoms. I do not recall any tick bites as well. However 1,5 years ago I was repeatedly bitten by bed bugs.
So symptoms:
November 2012 - slight numbness in my left arm
January 2013 - light depression
April 2013 - tingling/paresthesia in my left leg
May 2013 - Strong fatigue, strong depression (for 2 weeks), mild depression and fatigue on the top of everything above-mentioned. Then also sexual disfunction, which got a bit better by now, but still not what it used to be. Ringing in ears (comes few times a day for 3-30 seconds),
June 2013 - Muscle twitching in my legs, heart palpitations. Heart skips beat about 30 - 100 times a day.
All the symptoms come and go few times during the week, they never really. Some of them are more frequent than others.
May 2013:
Tests - MRI, Evoket Potantials - clear.
Lumbar Puncture - 2 Oligoclonal Bands, No Borellia antibody found.
Low Vit d - 10 ug/ml
Please comment from your Lyme experience. Can it be Lyme?
I am asking because the only way to diagnose Lyme is to go for private doc, which costs 400 USD only for consultation then 1000 USD on the top for all the tests and co-infections.
Any feedback will be appreciated.
I need your expert advice. I have some symptoms and do not know what they can be related to. I was thinking about MS or Lyme. I know Lyme is super hard to diagnose. The thing is that I do not remember any early stage Lyme disease e.g. flu-like symptoms. I do not recall any tick bites as well. However 1,5 years ago I was repeatedly bitten by bed bugs.
So symptoms:
November 2012 - slight numbness in my left arm
January 2013 - light depression
April 2013 - tingling/paresthesia in my left leg
May 2013 - Strong fatigue, strong depression (for 2 weeks), mild depression and fatigue on the top of everything above-mentioned. Then also sexual disfunction, which got a bit better by now, but still not what it used to be. Ringing in ears (comes few times a day for 3-30 seconds),
June 2013 - Muscle twitching in my legs, heart palpitations. Heart skips beat about 30 - 100 times a day.
All the symptoms come and go few times during the week, they never really. Some of them are more frequent than others.
May 2013:
Tests - MRI, Evoket Potantials - clear.
Lumbar Puncture - 2 Oligoclonal Bands, No Borellia antibody found.
Low Vit d - 10 ug/ml
Please comment from your Lyme experience. Can it be Lyme?
I am asking because the only way to diagnose Lyme is to go for private doc, which costs 400 USD only for consultation then 1000 USD on the top for all the tests and co-infections.
Any feedback will be appreciated.
The cognitive impairment is one of the most frustrating things to get and could be a sign of Lyme. That is why I first got misdiagnosed with MS, brain lesions, couldn't walk straight, muscle weakness, periods of blindness.
Lyme mimics other illnesses.
Lyme mimics other illnesses.
We're glad to help --
One aspect not highlighted above is this: There is a vicious battle in the medical community about Lyme, which may not be visible to you as you make your way through the system, but you should keep it in mind at all times, because it can cause serious difficulties in getting appropriate diagnosis and treatment for Lyme and any co-infections you may have.
Here is the short version: Borrelia burgdorferi, the formal name for the bacteria causing 'Lyme' disease has likely been around for a very long time (centuries, perhaps millenia), but has only recently exploded into epidemic proportions for reasons that are still unclear, but are perhaps simply the way Mother Nature rolls. In the U.S., as suburbs have expanded into former woodlands and countryside, the infections have risen substantially, and as diagnostic methods improved, Lyme was first studied in recent years near woodsy Lyme, Connecticut, not far from New York City.
Those initial US investigators included two scientists named Wormser and Steere, and their initial impression of Lyme just a few decades ago was that Lyme is a rare disease, but if acquired, it is easy to cure with a few weeks of a common antibiotic, doxycycline. Any remaining symptoms after such treatment are called 'post-Lyme syndrome', meaning that the infection is killed and gone, but that your immune system keeps over-reacting as though the infection is still active. There is no treatment recommended by these MDs for post-Lyme syndrome, which is categorized by so-called mainstream medicine as an annoyance, much like a previously broken bone can be uncomfortable when the weather is cold.
Those initial investigators have staked their reputations on Lyme being hard to get and easy to cure, but a more progressive faction of the medical community has determined that continued symptoms mean continued infection which should be treated promptly and thoroughly.
(Recent research also proposes a connection between dementia (including Alzheimer's disease) and various bacterial infections, including Lyme. (If you are interested in reading, search online for
-- alzheimer's and lyme disease a surprising connection --
and it will bring up many interesting and thoughtful links.)
The view of Lyme as a serious infection is not held by large portions of the medical community, which sticks to the idea that continued symptoms after a short course of antibiotics are simply an annoyance. The Infectious Disease Society of America (IDSA), the largest voluntary group of U.S. MDs engaged in that field of medicine, takes it as an article of faith that Lyme is hard to get and easy to cure, and naturally enough, MDs of all specialities and also GPs (general practitioners) look to the IDSA for research and guidance on diagnosis and treatment of any infectious disease, including Lyme. Any MD practicing outside the IDSA-approved 'guidelines' is seriously frowned on and could have little defense if brought into court on charges of malpractice for treating a patient by anything other than the IDSA Guidelines.
I think partly because science can move very quickly these days due to ultra-modern diagnostic tests and equipment, the IDSA has been caught by surprise by the speed with which the International Lyme and Associated Diseases Society (ILADS) has developed its own theories and understanding of Lyme disease diagnosis and treatment. The IDSA is not taking it well.
Thus a war has erupted in the medical community. On one side is the IDSA and most mainstream MDs, who believe a few weeks of doxycycline is sufficient to kill the infection, and any remaining symptoms are meaningless artifacts. On the other side are MDs who believe that Lyme disease should be treated aggressively for an extended period of time, due to particular characteristics of the Lyme bacteria which are similar to syphilis. A hundred or so years ago, before penicillin was discovered, syphilis dementia was a terrible scourge, and there is some suspicion today that Alzheimers and other dementias may be related to Lyme and other treatable infections that are left untreated or are treated inadequately.
As a result of the self-proclaimed primacy of the IDSA in these matters, most MDs will follow the IDSA diagnostic and treatment standards and will have nothing to do with any patient who wants extended treatment that an ILADS MD would prescribe.
Among the medical specialties who usually follow the IDSA standards are rheumatologists and neurologists, as well as infectious disease MDs. And this is the main purpose of this post: to alert you that any neurologist you may see (as you mention briefly above) could well follow the IDSA approaches to diagnosis and treatment and will be unwilling to treat longer and/or test more broadly for possible co-infections (which are other diseases often carried by the Lyme ticks).
Whichever kind of MD you see (whether a general practitioner or a specialist), please be aware that you may get little more than some doxycycline for a few weeks, and the MD may well not test through the IGeneX laboratories. If that happens, I would strongly urge you to say 'thank you' to that doc and then consult with a Lyme specialist who follows the ILADS approaches of testing and treatment.
Depending on where you are, someone here may be able to recommend a Lyme specialist to you by 'private message' through this site, even if you are in Europe. If you would like such a suggestion, I would post a new message on this site titled "Need LLMD near [Paris, France]" and/or email to ILADS at the address in my previous message above, tell them where you are located, and how far you can travel to see an ILADS-type MD. You can also 'search this site' in a small search box in the right hand column on this page for perhaps --
europe LLMD
-- and see what old messages pop up.
For further reading, if not mentioned already, on the
ILADS – [dot] – org
website you will find Dr. Burrascano's treatment guidelines, which are well worth reading at least quickly. They are long and somewhat rambling, but a good resource for the way ILADS docs think.
-- Note that the term LLMD is not a title or degree, but is patient slang for 'Lyme-literate MD', meaning an MD who views Lyme as ILADS does. An LLMD can be of any medical discipline or a general practitioner (GP). --
Enough from me! Best wishes, and do let us know how you do --
One aspect not highlighted above is this: There is a vicious battle in the medical community about Lyme, which may not be visible to you as you make your way through the system, but you should keep it in mind at all times, because it can cause serious difficulties in getting appropriate diagnosis and treatment for Lyme and any co-infections you may have.
Here is the short version: Borrelia burgdorferi, the formal name for the bacteria causing 'Lyme' disease has likely been around for a very long time (centuries, perhaps millenia), but has only recently exploded into epidemic proportions for reasons that are still unclear, but are perhaps simply the way Mother Nature rolls. In the U.S., as suburbs have expanded into former woodlands and countryside, the infections have risen substantially, and as diagnostic methods improved, Lyme was first studied in recent years near woodsy Lyme, Connecticut, not far from New York City.
Those initial US investigators included two scientists named Wormser and Steere, and their initial impression of Lyme just a few decades ago was that Lyme is a rare disease, but if acquired, it is easy to cure with a few weeks of a common antibiotic, doxycycline. Any remaining symptoms after such treatment are called 'post-Lyme syndrome', meaning that the infection is killed and gone, but that your immune system keeps over-reacting as though the infection is still active. There is no treatment recommended by these MDs for post-Lyme syndrome, which is categorized by so-called mainstream medicine as an annoyance, much like a previously broken bone can be uncomfortable when the weather is cold.
Those initial investigators have staked their reputations on Lyme being hard to get and easy to cure, but a more progressive faction of the medical community has determined that continued symptoms mean continued infection which should be treated promptly and thoroughly.
(Recent research also proposes a connection between dementia (including Alzheimer's disease) and various bacterial infections, including Lyme. (If you are interested in reading, search online for
-- alzheimer's and lyme disease a surprising connection --
and it will bring up many interesting and thoughtful links.)
The view of Lyme as a serious infection is not held by large portions of the medical community, which sticks to the idea that continued symptoms after a short course of antibiotics are simply an annoyance. The Infectious Disease Society of America (IDSA), the largest voluntary group of U.S. MDs engaged in that field of medicine, takes it as an article of faith that Lyme is hard to get and easy to cure, and naturally enough, MDs of all specialities and also GPs (general practitioners) look to the IDSA for research and guidance on diagnosis and treatment of any infectious disease, including Lyme. Any MD practicing outside the IDSA-approved 'guidelines' is seriously frowned on and could have little defense if brought into court on charges of malpractice for treating a patient by anything other than the IDSA Guidelines.
I think partly because science can move very quickly these days due to ultra-modern diagnostic tests and equipment, the IDSA has been caught by surprise by the speed with which the International Lyme and Associated Diseases Society (ILADS) has developed its own theories and understanding of Lyme disease diagnosis and treatment. The IDSA is not taking it well.
Thus a war has erupted in the medical community. On one side is the IDSA and most mainstream MDs, who believe a few weeks of doxycycline is sufficient to kill the infection, and any remaining symptoms are meaningless artifacts. On the other side are MDs who believe that Lyme disease should be treated aggressively for an extended period of time, due to particular characteristics of the Lyme bacteria which are similar to syphilis. A hundred or so years ago, before penicillin was discovered, syphilis dementia was a terrible scourge, and there is some suspicion today that Alzheimers and other dementias may be related to Lyme and other treatable infections that are left untreated or are treated inadequately.
As a result of the self-proclaimed primacy of the IDSA in these matters, most MDs will follow the IDSA diagnostic and treatment standards and will have nothing to do with any patient who wants extended treatment that an ILADS MD would prescribe.
Among the medical specialties who usually follow the IDSA standards are rheumatologists and neurologists, as well as infectious disease MDs. And this is the main purpose of this post: to alert you that any neurologist you may see (as you mention briefly above) could well follow the IDSA approaches to diagnosis and treatment and will be unwilling to treat longer and/or test more broadly for possible co-infections (which are other diseases often carried by the Lyme ticks).
Whichever kind of MD you see (whether a general practitioner or a specialist), please be aware that you may get little more than some doxycycline for a few weeks, and the MD may well not test through the IGeneX laboratories. If that happens, I would strongly urge you to say 'thank you' to that doc and then consult with a Lyme specialist who follows the ILADS approaches of testing and treatment.
Depending on where you are, someone here may be able to recommend a Lyme specialist to you by 'private message' through this site, even if you are in Europe. If you would like such a suggestion, I would post a new message on this site titled "Need LLMD near [Paris, France]" and/or email to ILADS at the address in my previous message above, tell them where you are located, and how far you can travel to see an ILADS-type MD. You can also 'search this site' in a small search box in the right hand column on this page for perhaps --
europe LLMD
-- and see what old messages pop up.
For further reading, if not mentioned already, on the
ILADS – [dot] – org
website you will find Dr. Burrascano's treatment guidelines, which are well worth reading at least quickly. They are long and somewhat rambling, but a good resource for the way ILADS docs think.
-- Note that the term LLMD is not a title or degree, but is patient slang for 'Lyme-literate MD', meaning an MD who views Lyme as ILADS does. An LLMD can be of any medical discipline or a general practitioner (GP). --
Enough from me! Best wishes, and do let us know how you do --
From a site in the US that is 'home' to one of the worlds experts on Lyme, Dr. Fallon :
Director, Lyme and Tick-Borne Diseases Research Center , Columbia University
Director, Center for the Study of Neuroinflammatory Disorders & Biobehavioral Medicine, Columbia University
-----comes these words:
"SPECT and PET images[...] assess brain function, MRI captures the physical structure of the brain"
And:
"SPECT scans also are limited in that the images obtained are rated relative to a part of the brain that is presumed to be working normally, such as the cerebellum or deep gray matter. This may not be true in Lyme Disease. This lack of "absolute quantification" limits the firmness with which one can draw conclusions regarding a SPECT image. Although SPECT imaging may be considered a helpful adjunctive tool in the differential diagnosis of Lyme Disease, it does not and cannot "make" the diagnosis of Lyme Disease.
http://www.columbia-lyme.org/patients/ld_spinal_fluid.html
They are both helpful in dx'ing Lyme so I wouldn't say one is better than the other---- just look at different 'things' in the brain. My Lyme doctor had both of them performed.
Something you might want to read is a thread I just started on MRI's:
http://www.medhelp.org/posts/Lyme-Disease/MRIs/show/1975222
Some important things to ask of the clinic/hospital you go to before you get an MRI. BCA, being a place with a good reputation, will probably have the lastest state-of-art MRI machine.
Director, Lyme and Tick-Borne Diseases Research Center , Columbia University
Director, Center for the Study of Neuroinflammatory Disorders & Biobehavioral Medicine, Columbia University
-----comes these words:
"SPECT and PET images[...] assess brain function, MRI captures the physical structure of the brain"
And:
"SPECT scans also are limited in that the images obtained are rated relative to a part of the brain that is presumed to be working normally, such as the cerebellum or deep gray matter. This may not be true in Lyme Disease. This lack of "absolute quantification" limits the firmness with which one can draw conclusions regarding a SPECT image. Although SPECT imaging may be considered a helpful adjunctive tool in the differential diagnosis of Lyme Disease, it does not and cannot "make" the diagnosis of Lyme Disease.
http://www.columbia-lyme.org/patients/ld_spinal_fluid.html
They are both helpful in dx'ing Lyme so I wouldn't say one is better than the other---- just look at different 'things' in the brain. My Lyme doctor had both of them performed.
Something you might want to read is a thread I just started on MRI's:
http://www.medhelp.org/posts/Lyme-Disease/MRIs/show/1975222
Some important things to ask of the clinic/hospital you go to before you get an MRI. BCA, being a place with a good reputation, will probably have the lastest state-of-art MRI machine.
Wow! Thanks for your input everyone! It is so informative.
To make things clearer, JackieCalifornia, I started in neurological clinic, which is covered by my insurance and they were seeking for MS, because it was what they suspected. I was on VitD supplement for 2,5 months now, taking 7000 IU daily. Vit D does not help. I do not know whether the blood level of VitD increased. I did not repeat the test yet. 2 O-Bands is not enough to diagnose MS. MS is hard to diagnose as well. From what I understand one needs to have quite a disabling symptom + MRI lesions to get MS dxed.
My magnesium level is ok. The hospital did tests for that.
BTW I forgot to mention memory issues that has arisen in May. In May I also had some problems with cognition. I could not write texts and sometimes could not even understand why to write them and what is going on in general :) But now the memory and cognitive function is better.
Meanwhile I will take all the above replies into consideration. The most important thing is all you said confirms my plan and I can start following it. I will keep you informed about any developments.
Thanks
To make things clearer, JackieCalifornia, I started in neurological clinic, which is covered by my insurance and they were seeking for MS, because it was what they suspected. I was on VitD supplement for 2,5 months now, taking 7000 IU daily. Vit D does not help. I do not know whether the blood level of VitD increased. I did not repeat the test yet. 2 O-Bands is not enough to diagnose MS. MS is hard to diagnose as well. From what I understand one needs to have quite a disabling symptom + MRI lesions to get MS dxed.
My magnesium level is ok. The hospital did tests for that.
BTW I forgot to mention memory issues that has arisen in May. In May I also had some problems with cognition. I could not write texts and sometimes could not even understand why to write them and what is going on in general :) But now the memory and cognitive function is better.
Meanwhile I will take all the above replies into consideration. The most important thing is all you said confirms my plan and I can start following it. I will keep you informed about any developments.
Thanks
I was going to move to Germany with my fiancée so I looked into that clinic Jackie mentioned. FYI, there is a 6 month waiting list.
Welcome to MedHelp Lyme --
I see you are in Germany. There is a clinic in Augsburg that is said be quite good -- BCA, Borreliose Centrum Augsburg. I understand what you mean about the cost of testing ... but that needs to be balanced against the daily and long-term cost to you of being so ill indefinitely. Lyme will not go away by itself, although sometimes your immune system can keep it in check at a low level. Lyme bacteria are in the same family as those that cause syphilis, which is also a disease that persists over time and requires treatment to cure.
You say: "I was thinking about MS or Lyme." That is a common differential, because the symptoms can be similar, at least in the eyes of MDs who are not familiar with Lyme.
You say: "I know Lyme is super hard to diagnose." Only for an MD who does not know, understand, appreciate or 'believe' in Lyme. The commonly used tests in the US (ELISA and Western blot) are not very accurate, because they rely on the reaction of your immune system against Lyme rather than a direct test seeking evidence of the bacteria themselves. Lyme suppresses the immune system, and so any reaction the ELISA and W.blot tests are looking for may not be there although you are infected. A better test is a polymerase chain reaction (PCR) test, which seeks direct evidence of Lyme bacteria DNA in your blood. A lab called IGeneX, located in California (they have a website), is the leader in the PCR testing.
"The thing is that I do not remember any early stage Lyme disease e.g. flu-like symptoms." Lyme is tricky in that regard: none of has exactly the same symptom array as anyone else. I never felt that I had the flu, but was simply tired, had slow mental processing, and sometimes ached a bit all over. Everyone is different, because Lyme can affect different bodily symptoms in each person, and that makes it harder for MDs to make an accurate diagnosis ... especially those MDs who already do not have Lyme on their differential diagnosis list.
"I do not recall any tick bites as well." Nor did I.
"However 1,5 years ago I was repeatedly bitten by bed bugs." I don't know if they are a known vector of Lyme, but I wouldn't worry too much about knowing exactly when and how you were infected.
"So symptoms:
November 2012 - slight numbness in my left arm
January 2013 - light depression
April 2013 - tingling/paresthesia in my left leg
May 2013 - Strong fatigue, strong depression (for 2 weeks), mild depression and fatigue on the top of everything above-mentioned. Then also sexual disfunction, which got a bit better by now, but still not what it used to be. Ringing in ears (comes few times a day for 3-30 seconds),
June 2013 - Muscle twitching in my legs, heart palpitations. Heart skips beat about 30 - 100 times a day."
All of these things can occur in Lyme. The twitching and palpitations may be due to low magnesium (Mg) levels, because Lyme uses up Mg in its reproductive cycle. Mg supplements can help a great deal -- varieties ending in "-ate" are said to be the most absorbable, such as Mg citrate, malate, orotate, aspartate, etc. I tried several different ones over time, and one works best for me, a brand that has citrate, asparate and orotate all three. Malate also was good. You may want to try it until you locate an MD, but be sure to tell the MD if you take the Mg, because it will change your symptom pattern if you have Lyme, and also tell the MD about your previous symptoms if the Mg helps resolve them.
"All the symptoms come and go few times during the week, they never really [go away]. Some of them are more frequent than others." This not uncommon. Everyone is a bit different.
"May 2013: Tests - MRI, Evoket Potantials - clear." -- MRI is not particularly useful in diagnosing or ruling out Lyme. Lyme specialists prefer a SPECT scan [single-photon emission computed tomography].
"Lumbar Puncture - 2 Oligoclonal Bands, No Borellia antibody found." -- Lyme bacteria or antibodies are often not found in spinal fluid. The absence of such antibodies does NOT rule out Lyme.
"Low Vit d - 10 ug/ml" -- This can occur in Lyme, but also in other conditions. Vitamin D supplements may help, but again be sure to tell your doctor if you are taking any vitamins/supplements so that the doctor can factor that in to your test results and symptoms.
-----------------------------------------------------------------------------------------------
Over time, and without treatment, you may find that you don't feel worse and simply accommodate to the symptoms you have now, but I would not recommend that course of action. Whatever you spend to get well will be money well spent. You perceive some of the symptoms now, but until you are once again well, you may not fully perceive at what a low level you are performing mentally and physically -- Lyme can mask even the patient's perception of illness.
There may be other Lyme specialists in Germany as well, and you can email to
contact [at] ILADS [dot] org
and tell them where you are located and how far you can travel. They can send you names of ILADS members nearby. BCA may be the only one, but perhaps not. ILADS is the International Lyme and Associated Diseases Society, the main voluntary group for MDs specializing in Lyme disease and its common co-infections, of which there are a number.
Another thought -- you may wish to contact the IGeneX laboratory before going through the trouble of having blood drawn and sent to them to see if they are able to test for European strains of Lyme. If they are not, then they may be able to recommend another lab. I and others have found IGeneX to be very helpful to patients overall.
On the ILADS website, you will also find Dr Burrascano's Treatment Guidelines, which may be more than you want to read or can easily comprehend while ill. The Guidelines have been added to in a haphazard fashion over the years, so it can be a bit jumbled, but it is still worthwhile.
Others here may have other suggestions, so do check back, and let us know how you are doing. Best wishes --
I see you are in Germany. There is a clinic in Augsburg that is said be quite good -- BCA, Borreliose Centrum Augsburg. I understand what you mean about the cost of testing ... but that needs to be balanced against the daily and long-term cost to you of being so ill indefinitely. Lyme will not go away by itself, although sometimes your immune system can keep it in check at a low level. Lyme bacteria are in the same family as those that cause syphilis, which is also a disease that persists over time and requires treatment to cure.
You say: "I was thinking about MS or Lyme." That is a common differential, because the symptoms can be similar, at least in the eyes of MDs who are not familiar with Lyme.
You say: "I know Lyme is super hard to diagnose." Only for an MD who does not know, understand, appreciate or 'believe' in Lyme. The commonly used tests in the US (ELISA and Western blot) are not very accurate, because they rely on the reaction of your immune system against Lyme rather than a direct test seeking evidence of the bacteria themselves. Lyme suppresses the immune system, and so any reaction the ELISA and W.blot tests are looking for may not be there although you are infected. A better test is a polymerase chain reaction (PCR) test, which seeks direct evidence of Lyme bacteria DNA in your blood. A lab called IGeneX, located in California (they have a website), is the leader in the PCR testing.
"The thing is that I do not remember any early stage Lyme disease e.g. flu-like symptoms." Lyme is tricky in that regard: none of has exactly the same symptom array as anyone else. I never felt that I had the flu, but was simply tired, had slow mental processing, and sometimes ached a bit all over. Everyone is different, because Lyme can affect different bodily symptoms in each person, and that makes it harder for MDs to make an accurate diagnosis ... especially those MDs who already do not have Lyme on their differential diagnosis list.
"I do not recall any tick bites as well." Nor did I.
"However 1,5 years ago I was repeatedly bitten by bed bugs." I don't know if they are a known vector of Lyme, but I wouldn't worry too much about knowing exactly when and how you were infected.
"So symptoms:
November 2012 - slight numbness in my left arm
January 2013 - light depression
April 2013 - tingling/paresthesia in my left leg
May 2013 - Strong fatigue, strong depression (for 2 weeks), mild depression and fatigue on the top of everything above-mentioned. Then also sexual disfunction, which got a bit better by now, but still not what it used to be. Ringing in ears (comes few times a day for 3-30 seconds),
June 2013 - Muscle twitching in my legs, heart palpitations. Heart skips beat about 30 - 100 times a day."
All of these things can occur in Lyme. The twitching and palpitations may be due to low magnesium (Mg) levels, because Lyme uses up Mg in its reproductive cycle. Mg supplements can help a great deal -- varieties ending in "-ate" are said to be the most absorbable, such as Mg citrate, malate, orotate, aspartate, etc. I tried several different ones over time, and one works best for me, a brand that has citrate, asparate and orotate all three. Malate also was good. You may want to try it until you locate an MD, but be sure to tell the MD if you take the Mg, because it will change your symptom pattern if you have Lyme, and also tell the MD about your previous symptoms if the Mg helps resolve them.
"All the symptoms come and go few times during the week, they never really [go away]. Some of them are more frequent than others." This not uncommon. Everyone is a bit different.
"May 2013: Tests - MRI, Evoket Potantials - clear." -- MRI is not particularly useful in diagnosing or ruling out Lyme. Lyme specialists prefer a SPECT scan [single-photon emission computed tomography].
"Lumbar Puncture - 2 Oligoclonal Bands, No Borellia antibody found." -- Lyme bacteria or antibodies are often not found in spinal fluid. The absence of such antibodies does NOT rule out Lyme.
"Low Vit d - 10 ug/ml" -- This can occur in Lyme, but also in other conditions. Vitamin D supplements may help, but again be sure to tell your doctor if you are taking any vitamins/supplements so that the doctor can factor that in to your test results and symptoms.
-----------------------------------------------------------------------------------------------
Over time, and without treatment, you may find that you don't feel worse and simply accommodate to the symptoms you have now, but I would not recommend that course of action. Whatever you spend to get well will be money well spent. You perceive some of the symptoms now, but until you are once again well, you may not fully perceive at what a low level you are performing mentally and physically -- Lyme can mask even the patient's perception of illness.
There may be other Lyme specialists in Germany as well, and you can email to
contact [at] ILADS [dot] org
and tell them where you are located and how far you can travel. They can send you names of ILADS members nearby. BCA may be the only one, but perhaps not. ILADS is the International Lyme and Associated Diseases Society, the main voluntary group for MDs specializing in Lyme disease and its common co-infections, of which there are a number.
Another thought -- you may wish to contact the IGeneX laboratory before going through the trouble of having blood drawn and sent to them to see if they are able to test for European strains of Lyme. If they are not, then they may be able to recommend another lab. I and others have found IGeneX to be very helpful to patients overall.
On the ILADS website, you will also find Dr Burrascano's Treatment Guidelines, which may be more than you want to read or can easily comprehend while ill. The Guidelines have been added to in a haphazard fashion over the years, so it can be a bit jumbled, but it is still worthwhile.
Others here may have other suggestions, so do check back, and let us know how you are doing. Best wishes --
Bob----- from your symptoms a good case could be made for Lyme disease. But other illnesses could be the cause also. :(
Not seeing or feeling a tick bite is common for a lot of us.
From the tests that you had it seemed as if they were looking for an MS diagnosis: for instance the evoked potentials is common for dx of MS. I'm not aware of those being helpful for Lyme but I also freely admit I don't know if they are or aren't.
They found oligoclonal bands----- I don't know if that's enough for a dx of MS. They CAN show up in other diseases.
Not finding Borellia abs means absolutely nothing. It's not known if they sent the spinal fluid to a lab that was experienced (or even was interested in) looking for Borellia.
Even if the test was sent to Igenex or another good lab----- a negative means nothing. The next lumbar puncture (not that I'm suggesting getting another one) might have shown positive. It just means that there were no antibodies for Borellia in that sample.
A positive, though, would be a positive. Positively. (grin)
Low Vit D may or may not be anything other than low Vit D. Easily corrected with Vit D3 tablets if your doctor suggests them.
Bedbugs? There's been some talk about many different biting insects passing on Lyme. I'd have to look at the literature and see if there's any science behind that. The CDC states 'NO' "not reported". :)
Gotta go right now. I'll be back or others will to try to help you.
Go to www.ilads.org to read the articles there--- they may help you a bit.
Not seeing or feeling a tick bite is common for a lot of us.
From the tests that you had it seemed as if they were looking for an MS diagnosis: for instance the evoked potentials is common for dx of MS. I'm not aware of those being helpful for Lyme but I also freely admit I don't know if they are or aren't.
They found oligoclonal bands----- I don't know if that's enough for a dx of MS. They CAN show up in other diseases.
Not finding Borellia abs means absolutely nothing. It's not known if they sent the spinal fluid to a lab that was experienced (or even was interested in) looking for Borellia.
Even if the test was sent to Igenex or another good lab----- a negative means nothing. The next lumbar puncture (not that I'm suggesting getting another one) might have shown positive. It just means that there were no antibodies for Borellia in that sample.
A positive, though, would be a positive. Positively. (grin)
Low Vit D may or may not be anything other than low Vit D. Easily corrected with Vit D3 tablets if your doctor suggests them.
Bedbugs? There's been some talk about many different biting insects passing on Lyme. I'd have to look at the literature and see if there's any science behind that. The CDC states 'NO' "not reported". :)
Gotta go right now. I'll be back or others will to try to help you.
Go to www.ilads.org to read the articles there--- they may help you a bit.
I am still sick so others will give you more answers but I can tell you that not everyone, including me, got a flu or rash.
Lyme is the great pretender, imitates other illnesses. I was misdiagnosed with MS and Lupus among other things.
The best way to rule out Lyme is to go to an LLMD and get IgeneX blood tests. Lumbar puncture doesn't really prove anything same for an MRI. For me it showed lesions on my brain for a Lyme co-infection.
Your symptoms could be Lyme. I don't know what bed bugs can do.
For signs and symptoms of Lyme, google ILADS.org and read Burascano's treatment guidelines. You can also ask ILADS for a referral to a Lyme literate Dr ( LLMD).
It is indeed expensive but somehow the sooner the treatment, the better.
Lyme is the great pretender, imitates other illnesses. I was misdiagnosed with MS and Lupus among other things.
The best way to rule out Lyme is to go to an LLMD and get IgeneX blood tests. Lumbar puncture doesn't really prove anything same for an MRI. For me it showed lesions on my brain for a Lyme co-infection.
Your symptoms could be Lyme. I don't know what bed bugs can do.
For signs and symptoms of Lyme, google ILADS.org and read Burascano's treatment guidelines. You can also ask ILADS for a referral to a Lyme literate Dr ( LLMD).
It is indeed expensive but somehow the sooner the treatment, the better.
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