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Could it really be Lyme??
Hi there,
I´ve posted on several forums months ago,but now my symptoms seem to worsen.That´s why I feel it´s time to post again.
I´m now since March this year struggling with a lot of bad symptoms.
Started with a flu like illness in march.Since that I have not felt healty again.In the following weeks after the illness I constantly felt exhausted and tired with episodes of dizzyness and times where my knees where shaking and jittering like in the middle of a panik attack.Some time later heart issues began to develop.hearbeats,heart racing and irregular heartbeat especially at night.from june one the symptoms seemed to change to weakness issues.I developed muscle weakness,muscle twitching as well as balance and coordination issues lasting until today.joint and bone problems and hairloss were also present,and since about 6-8 weeks the joint and bone pains have increased a lot.I can´t barely walk around because the muscles seem so weak and jelly like and bones and joints are hurting.Can feel practically every little bone of my feet when walking.In addition to all this I have lost muscle mass,eventually because of the inability to move normally since march of this year.but who know´s maybe it´s partly related to lyme as well.
at the moment I´m really wondering if all this could be lyme or not.I know it doesnt looks like a classical case,but on the other hand at least the start seems to match the lyme scheme.Additionaly I was already tested positive for lyme several months ago and as I live in the wild I get a thick bite every two weeks between march and october.and when it comes to the symptoms it´s hard to say.Alot of them match,but that´s it.
I wouldnt even consider lyme if not most other things have been already ruled out.So it comes down to a basic question.Considering all of this,could it be lyme??
and if yes,how can I make it a more definite diagnosis?
thx a lot
best wishes
patrick
I´ve posted on several forums months ago,but now my symptoms seem to worsen.That´s why I feel it´s time to post again.
I´m now since March this year struggling with a lot of bad symptoms.
Started with a flu like illness in march.Since that I have not felt healty again.In the following weeks after the illness I constantly felt exhausted and tired with episodes of dizzyness and times where my knees where shaking and jittering like in the middle of a panik attack.Some time later heart issues began to develop.hearbeats,heart racing and irregular heartbeat especially at night.from june one the symptoms seemed to change to weakness issues.I developed muscle weakness,muscle twitching as well as balance and coordination issues lasting until today.joint and bone problems and hairloss were also present,and since about 6-8 weeks the joint and bone pains have increased a lot.I can´t barely walk around because the muscles seem so weak and jelly like and bones and joints are hurting.Can feel practically every little bone of my feet when walking.In addition to all this I have lost muscle mass,eventually because of the inability to move normally since march of this year.but who know´s maybe it´s partly related to lyme as well.
at the moment I´m really wondering if all this could be lyme or not.I know it doesnt looks like a classical case,but on the other hand at least the start seems to match the lyme scheme.Additionaly I was already tested positive for lyme several months ago and as I live in the wild I get a thick bite every two weeks between march and october.and when it comes to the symptoms it´s hard to say.Alot of them match,but that´s it.
I wouldnt even consider lyme if not most other things have been already ruled out.So it comes down to a basic question.Considering all of this,could it be lyme??
and if yes,how can I make it a more definite diagnosis?
thx a lot
best wishes
patrick
One more thing. To give you an idea of just how screwed up the majority of the mainstream medical system is...I tested CDC positive through LabCorp then was told by the infectious disease physician that he felt it was a false positive and didn't trust LabCorp. Well, the CDC uses LabCorp in bioterrorism and several other things. So we have a CDC who disagrees with the infectious disease society as far as useful labs yet we have a CDC who is supporting and using the IDSA guidelines on how to diagnose and treat Lyme disease. I have since tested positive by ELISA through Quest Labs, four times positive on the ELISA through LabCorp, three times positive by IgM through LabCorp and positive with 8 bands on the IgM through Igenex. I am being treated. I am seeing improvement. The problem with Lyme disease is not with the patients. It is with the currently flawed medical system which is just now finding out what the repercussions of their decisions are. That is the very reason the movie Under Our Skin is now on the short list for the Oscars for 2010. This controversy is huge and it is coming to a head. Do not stop until you find out what it is you have. You yourself know exactly how you feel, the pain you are experiencing. General practitioners are not psychiatrists. Many psychiatrists are actually on the side of Lyme patients. Dr. Brian Fallon, MD, Psychiatrist at Columbia University is one of them and he specializes in tick-borne illnesses. Do not let an underqualified physician tell you that you need psychological help when you KNOW there is something wrong.
I recommend you be tested through IgeneX. You need to get a copy of your lab results and see which bands are positive on your test. You also need to watch the documentary movie Under Our Skin and read the book Cure Unknown. The lab tests for Lyme disease are not the only basis for diagnosing Lyme disease. Lyme disease should be a clinical diagnosis with the tests becoming a help rather than the tests being the diagnostic indicator. Your physician may not be a LLMD. Only an LLMD is qualified to diagnose Lyme disease based on clinical symptoms. Please visit ILADS.org. They may be able to help you find a qualified doctor in your area. Otherwise, I recommend you head to the U.S. and get tested. Dr. Raphael Stricker in Calilfornia also has a long waiting list but he is the past president of ILADS and may be able to help you. If you had bands showing on your IgG and they are specific borrelia species bands, then that is highly indicative of Lyme disease regardless of whether or not you had enough bands to qualify you as CDC positive.
Hi there,
Just thought I would urge you to consider the test for Babesia - I live in Europe too and suffered almost exactly the same dymptoms as you - in the same extent.
Though my Lyme test also came back negative I am lucky that My GP understood that I had been bitten by a tick and gave me treatment to be on the safe side - When symptoms began returning soon after treatment he treated me for Babesia too - If you cannot get treatment without tests then Please do get a test for this as it can be just as horrific as Lyme. Look up Jeseph Borruscano MD - 'Advanced Topics on Lyme Disease' 2006 - it's a document deatailing info about Lyme and about co-infections. Google it and you will find a printable version of the document. Perhaps take along to your MD He is a specialist in New York.
Good luck.
Just thought I would urge you to consider the test for Babesia - I live in Europe too and suffered almost exactly the same dymptoms as you - in the same extent.
Though my Lyme test also came back negative I am lucky that My GP understood that I had been bitten by a tick and gave me treatment to be on the safe side - When symptoms began returning soon after treatment he treated me for Babesia too - If you cannot get treatment without tests then Please do get a test for this as it can be just as horrific as Lyme. Look up Jeseph Borruscano MD - 'Advanced Topics on Lyme Disease' 2006 - it's a document deatailing info about Lyme and about co-infections. Google it and you will find a printable version of the document. Perhaps take along to your MD He is a specialist in New York.
Good luck.
hi there,
just to keep you guys updated:
went to see the lyme doc this month.He tested ELISA and WesternBLot everything negative.Now he wants to do an LTT Test to rule out the Lyme issue...
My question is: Is the LTT Test the most reliable or is there an even better one?! I have to pay 250 bucks for the test so I really make up my mind on this.
THX
just to keep you guys updated:
went to see the lyme doc this month.He tested ELISA and WesternBLot everything negative.Now he wants to do an LTT Test to rule out the Lyme issue...
My question is: Is the LTT Test the most reliable or is there an even better one?! I have to pay 250 bucks for the test so I really make up my mind on this.
THX
Good for you! A month's wait is not uncommon. Hang on, it will be here before you know it. Keep us posted.
I have arranged an appointment at Jan 6th with an lyme specialized doctor.sadly I have to wait that long cause it´s the only avaliable option in my area...
The approach of your MDs -- diagnosing your ailments as psychological rather than physical -- is all too common an experience for Lyme patients. And by 'Lyme patients' I mean those who have the various tickborne diseases including not only Lyme but also babesiosis and others carried by the same multi-tasking ticks.
You are not alone in having heard that advice -- 'just go home and think positive thoughts.'
If you can't nudge your current MD along to taking action (whether testing or treatment or both, but simply to be more aggressive), I would begin looking right away for a new MD. Time is very important in treatment -- the sooner the better -- not just so you can reclaim your daily life but also to more effectively and efficiently kill the bacteria.
First is testing, then treatment, but neither of those can happen without an appointment with an MD who understands. I remember very well feeling so ill that I didn't think I could manage one more problem to unravel (that of finding a new MD), but I finally made it and regret now that it took me so long -- but I was so ill that I couldn't make it happen. The psychological drag of Lyme+ is huge -- so don't beat up on yourself, just take a small action each day.
The action to take today is to decide whether to find a new MD. You can keep seeing your current MD while you seek and transition to a new MD -- I learned to press ahead on several fronts because time was wasting.
Then if you decide to seek a new MD, that is your job for tomorrow: find another LLMD and make an appointment. If the wait is long, make the appointment and then look for another LLMD, and if the appointment is sooner, then cancel the first 'new' LLMD appointment. Be aggressive -- it's your health and well-being we're talking about.
It is very hard, I know, to have to be in charge when so ill -- but we have all been there (are still there at some level), and it can be done. Go for it. Let us know how you do, this is a good place to come for support and advice.
You are not alone in having heard that advice -- 'just go home and think positive thoughts.'
If you can't nudge your current MD along to taking action (whether testing or treatment or both, but simply to be more aggressive), I would begin looking right away for a new MD. Time is very important in treatment -- the sooner the better -- not just so you can reclaim your daily life but also to more effectively and efficiently kill the bacteria.
First is testing, then treatment, but neither of those can happen without an appointment with an MD who understands. I remember very well feeling so ill that I didn't think I could manage one more problem to unravel (that of finding a new MD), but I finally made it and regret now that it took me so long -- but I was so ill that I couldn't make it happen. The psychological drag of Lyme+ is huge -- so don't beat up on yourself, just take a small action each day.
The action to take today is to decide whether to find a new MD. You can keep seeing your current MD while you seek and transition to a new MD -- I learned to press ahead on several fronts because time was wasting.
Then if you decide to seek a new MD, that is your job for tomorrow: find another LLMD and make an appointment. If the wait is long, make the appointment and then look for another LLMD, and if the appointment is sooner, then cancel the first 'new' LLMD appointment. Be aggressive -- it's your health and well-being we're talking about.
It is very hard, I know, to have to be in charge when so ill -- but we have all been there (are still there at some level), and it can be done. Go for it. Let us know how you do, this is a good place to come for support and advice.
I guess it´s because all the docs think it´s something psychological.I have gotten diagnosis of "somatization" so often that it´s now even impossible for docs to step away from that no matter what I say...
I agree with the above advice. I don't know why they are not treating you if you are this uncomfortable and no other cause has been identified. The earlier treatment for Lyme is given, the more effective it is. The risk of oral antibiotics is relatively low (though of course discuss that with your doc) but I don't know for what they are waiting.
In the US, we do go through similar ordeals in order to get treatment. A good reference is "Cure Unknown" by Pam Weintraub, you may be interested in this book given your situation. It has an easy-to-find website with online content.
In the US, we do go through similar ordeals in order to get treatment. A good reference is "Cure Unknown" by Pam Weintraub, you may be interested in this book given your situation. It has an easy-to-find website with online content.
Given your understandable concern about your symptoms, may I suggest that you see your MD again and consult him/her about re-testing (or more testing) and treatment?
You may also wish to consult a Lyme specialist, but if you are in Europe I don't know how you located one there. To my understanding, Lyme does not just go away by itself, and it requires treatment. Given your level of concern and your symptoms, is it not time for pursuing this? You say, "I was never treated anyway, although my GP writes it should be evaluated if the clinical symptoms persist." Given you more recent posting above, it sounds like you may already have achieved persistence of symptoms.
Although Lyme symptoms may fade without treatment, there is one view that it never goes away without treatment but instead goes dormant and continues to recur. The longer treatment is delayed, the more difficult to treat.
I am not medically qualified, so my comments are simply the approach I would take if I had your symptoms. Your daily life sounds clearly affected, so you could return to your current MD now, or look for another MD who is more aggressive about treatment if he/she agrees that your test results indicate it.
Your test results are not written the same way I am familiar with, so I don't know the meaning, but given your symptoms, why not see the MD again, or go find a new one, given how poorly you feel.
And as a rule, I would always get copies of ALL test results and give them to your next MD, while also keeping a copy of them for your own files.
You may also wish to consult a Lyme specialist, but if you are in Europe I don't know how you located one there. To my understanding, Lyme does not just go away by itself, and it requires treatment. Given your level of concern and your symptoms, is it not time for pursuing this? You say, "I was never treated anyway, although my GP writes it should be evaluated if the clinical symptoms persist." Given you more recent posting above, it sounds like you may already have achieved persistence of symptoms.
Although Lyme symptoms may fade without treatment, there is one view that it never goes away without treatment but instead goes dormant and continues to recur. The longer treatment is delayed, the more difficult to treat.
I am not medically qualified, so my comments are simply the approach I would take if I had your symptoms. Your daily life sounds clearly affected, so you could return to your current MD now, or look for another MD who is more aggressive about treatment if he/she agrees that your test results indicate it.
Your test results are not written the same way I am familiar with, so I don't know the meaning, but given your symptoms, why not see the MD again, or go find a new one, given how poorly you feel.
And as a rule, I would always get copies of ALL test results and give them to your next MD, while also keeping a copy of them for your own files.
hi there,
my local GP ran some tests for lyme every few months,but it seems that the results are not indicative enough.I have positive IgG Antibodies since June,but negative IgM Antibodies.Westernblot seems to be negative 3 times and then there is something called G41 test which is positive.Sorry don´t know exactly what this means.I just read what my GP has sent me which is BOIGG 8+ which I interpret as IgG Antibodies,and BOWBG negativ which seems to be Western Blot Test.So based on that interpretation lyme seems unlikely ?!?
I was never treated anyway,although my GP writes it should be evaluated if the clinical symptoms persist...
my local GP ran some tests for lyme every few months,but it seems that the results are not indicative enough.I have positive IgG Antibodies since June,but negative IgM Antibodies.Westernblot seems to be negative 3 times and then there is something called G41 test which is positive.Sorry don´t know exactly what this means.I just read what my GP has sent me which is BOIGG 8+ which I interpret as IgG Antibodies,and BOWBG negativ which seems to be Western Blot Test.So based on that interpretation lyme seems unlikely ?!?
I was never treated anyway,although my GP writes it should be evaluated if the clinical symptoms persist...
Sorry to hear you are ill. Some questions:
When you tested positive for Lyme, were you treated?
What tests showed positive for Lyme? What were the markers on the tests that showed positive? What laboratory ran the tests (Igenex, LabCorp, Quest, other?)
Were you tested for co-infections that ticks sometimes carry along with Lyme?
Have you been in Germany all along, or have you gone there since you became ill? (There are differences in European strains of Lyme compared to common US strains.)
When you tested positive for Lyme, were you treated?
What tests showed positive for Lyme? What were the markers on the tests that showed positive? What laboratory ran the tests (Igenex, LabCorp, Quest, other?)
Were you tested for co-infections that ticks sometimes carry along with Lyme?
Have you been in Germany all along, or have you gone there since you became ill? (There are differences in European strains of Lyme compared to common US strains.)
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