Welcome to MedHelp Lyme --
You're asking good questions. There is much confusion in the medical community about Lyme and other tickborne infections, and educating yourself so that you can sort through what you hear from your docs is imo critically important.
Whether high blood pressure episodes can be related to Lyme, I don't know. No one here is medically trained, but many of us have been through much Sturm und Drang with the medical profession due to all the confusion out there.
(I am not familiar with the medication 'ramilich' -- does it have a different name in the US?)
Bravo to your doctor for running a Lyme test! Do you have copies of the test results? It is a good practice to always get copies of all test results related to Lyme, because it is sometimes necessary or helpful to consult with one or more MDs and Lyme specialists along the way, and those past tests may speak to the new docs in a way that the previous docs did not understand. I would start a binder and keep all the results in there, for possible future reference. (Asking later runs the risk of not getting ALL the tests, when they ALL should be considered in a later review.)
My daughter had no symptoms of Lyme, or rather did not realize that she had symptoms until after she was diagnosed and treated for Lyme and another disease the same ticks often carry (generically called 'co-infections'). In someone with a strong immune system, the symptoms can be very slight and shrugged off as overwork, stress, etc. My daughter's only symptom was tiredness, so your situation is not unheard of. There are probably quite a few walking around in the same situation who have just not yet been diagnosed.
As to your reaction to the earlier course of antibiotics, it is possible, from what I read, that your headache could be the result of the antibiotics killing the bacteria, causing a rush of symptoms from the die-off. This phenomenon in Lyme is called a Herxheimer reaction (or simply 'Herx'), in which the dying bacteria release irritating chemicals into the body that can cause flu-like symptoms such as you describe, but everyone is different. I personally had very little 'Herxing', but others have strong ones.
You also say, "Now , I am told that I have borreliosis & my doctor recommended that I should take antibiotics for three weeks."
Here is where there is an issue among different approaches to Lyme. So-called mainstream medicine, including many if not most infectious disease MDs, believe that Lyme bacteria are like any others we as humans often encounter, and that the Lyme bacteria can be eradicated by a few weeks of antibiotics such as doxycycline, just as your MD suggested.
However, those more expert in the Lyme field have determined that because of peculiar characteristics of the Lyme bacteria (formal name: Borrelia burgdorferi), a short course of 'doxy' is very often inadequate. Lyme bacteria, like the bacteria causing Hansen's disease (leprosy) and tuberculosis (TB), have very slow reproductive cycles, and it is only when reproducing (and while the bacterial cell wall is disrupted as it splits into two) that the antibiotics are most effective at killing the bacteria. Lyme bacteria, so I have read, reproduce every few days, while more usual bacteria reproduce every *20 minutes*, thus a few weeks of antibiotics effective in strep throat etc. will not have sufficient opportunity to attack the Lyme bacteria over and over until they are all eradicated. Lyme treatment extends at least several months, not weeks.
In addition, doxycycline is not effective against Lyme except almost immediately after infection occurs, and because many of us (like you) do not know precisely when we were bitten, it is possible and even likely that our Lyme infections will not be cured by a few weeks of doxy.
Also the Lyme bacteria have the ability to hide in the body where the immune system and antibiotics have difficulty finding them. The bacteria like to live in cartilage, where there is low blood flow, and where the immune system may not readily reach.
Lyme is, simply, not your usual bacterium.
You ask, "How am I supposed to be sure that one year ago & my blood test result last week is really from Lyme disease?? I don't even remember getting bite by a tick." Nor did I ever see a tick or get a rash, nor did my daughter. Sometimes that is because the tick is terribly tiny, the size of the period at the end of a sentence, and easily overlooked. Sometimes it is because the bite is hidden on the scalp and not seen. Some people get a rash, but many of us do not. I never did, nor did my daughter.
The assumption by many doctors that a rash and a tick must be seen to confirm a diagnosis of Lyme is simply wrong. The standards many doctors use, such as requiring a known tick and visible rash, were supposed to be used only for research, to ensure that the illness being investigated was truly Lyme; the "tick-and-rash" requirement was not supposed to be used for *diagnosis*, because such a standard misses so many of us who are truly infected. This is part of the confusion in the medical community.
Your MD means well, and bravo to him for even testing you for Lyme! However, his treatment approach is not one I would accept without consulting another MD who is more up to date with Lyme diagnosis and treatment, especially considering your pregnancy. Many babies are delivered with no problems, but it is important that your MD be up to date with current thinking on these points. It does not always happen that the baby is born with Lyme, because the umbilical cord can block transmission of the bacteria to the baby. It is however extremely important that you consult as soon as possible with a Lyme specialist who can advise you on how to proceed.
You will see the term LLMD here and elsewhere. It it neither a title nor a degree, and is instead simply patient slang denoting an MD who understands all these aspects of Lyme that other MDs do not. There is a clinic in Augsburg that has a good reputation with regard to Lyme, the Borreliose Centrum, abbreviated 'BCA'. You will find them easily in an online search. If I were in your situation, I would consult them if you find no one you prefer.
We have other posters here who are in Europe or are more familiar with the possibilities, so you may want to put up a new post with a title such as "Need Lyme MD in Germany" and see what you get.
You can also email to ILADS, the organization mentioned above, to this address:
contact [at] ILADS.org
and ask them for Lyme specialists in Germany, also listing cities and other countries you can travel to as needed. Once established with an LLMD, appointments are often only once a month. Your obstetrician and LLMD should perhaps be in contact as well, so that they are on the same page.
An LLMD will also know, based on your symptoms, to test for other possible infections that the Lyme ticks often carry about 50% of the time. These need separate testing and treatment from Lyme. You may also want to have your older child tested, just in case.
Sorry to overwhelm you with all of this. Let us know how we can help. And try not to worry -- many healthy babies are born to Lyme mothers!
Best wishes to you -- please keep us posted --
I agree with everything Jackie said.
I recently read an article by a German doctor who has studied Borrelia, and he says there is never a spontaneous cure without antibiotics. Our immune systems just can't clear the bacteria by itself, as it is probably the most sophisticated bacteria we've even seen. It is very good at hiding from the immune system and surviving attack, even long term antibiotics.
If you have a positive test, then you definitely want to get treated. You don't want full blown late stage Borreliosis kicking in someday in the future. The standard three weeks of Doxy might cure you, but I really doubt it at this point. A researcher in the U.S. named Eva Sapi has shown that Borrelia is quick to convert into different forms in the presence of Doxycycline, forms that Doxy can't touch.
In Germany, there is a clinic in Augsburg that sounds like the best in Europe for treating Borreliosis. I encourage you to go there for a consultation. They can treat you properly. If you were pregnant during or after your past incident with the severe headaches after antibiotics, then they can evaluate your child/children, also. Lyme can be passed in utero to a baby, even when the mother doesn't have active symptoms. Any developmental delay in your children could be signs of congenital Borreliosis. Not knowing when you were infected, you'll want to tell them about your pregnancies even if your kids seem perfectly okay.
It sounds like you're one of those folks with a fairly robust immune system who held a Lyme infection in check for quite a while. Eventually, it takes hold and starts causing symptoms, though, so tackling it now while it's not bad is an excellent idea.
Thank you for your wonderful replies. I will get back here again soon after I get my test results tomorrow & look up the doctor in Augsburg.
I just wanted to add that my fiancée is in Germany and there is a chance of my moving there. He called the German Clinic and there is a 6 month waiting list so you may want to get on the list while checking out other places.
Above you say: "I recently read an article by a German doctor who has studied Borrelia, and he says there is never a spontaneous cure without antibiotics."
Syphilis, also caused by a spirochete, is persistent and requires treatment to eradicate. And Lyme is known to suppress the immune system, so persistence makes sense in that regard as well.
Supression by the immune system, perhaps, but spontaneous cure I would doubt.
[Sorry, I got interrupted there] .... So yes, that makes sense to me, what the doc said in that article. Someone with a strong immune system may hold back the symptoms of a Lyme infection, but it's not really gone ... just suppressed and hiding, not killed by the immune system without meds.
Just wanted to stop by here before I go to bed. All my kids started walking & talking between 11 to 13 months. Although the two youngest has apple juice allergy, which could be a sign for something else?? I will have them tested to perhaps help me find out for sure how long or since when I've had Borreliosis. In my own remedy, I'm considering to do fasting cure - water diet, as I am curious what the bacteria feeds on in our bodies in order to multiply. Also, will probably ask my doctor for oxygen cleansing in the blood to rid of toxins & perhaps a blood transfusion from my husband. Has any of you tried any self cure such as 'fasting'? Just my thoughts, but will see what my doctor will say. Goodnight from Baden Wurttemberg!
I don't know that allergies have anything to do with Lyme, which is a bacterial infection.
Also, I don't think it's possible to tell from testing how long you have had Lyme, other than the IgG and IgM antibodies that your immune system makes against the bacteria, but the tests are notoriously inaccurate because of fluctuations in your body's manufacture of the antibodies. Nor does it matter necessarily how long you have been infected if it is beyond a few weeks, and most of us never know when we were infected.
Unless you are recently infected (within a couple of weeks back), how long you have been infected does not change the treatment approach, which in any event is normally antibiotics. There are other, non-traditional remedies such as Rife machines that you may wish to look into. We have occasionally had posters here who used Rife, but I have heard no success stories from any of them.
Fasting and diet would not, to my knowledge, cure any bacterial infection, of which Lyme is one. If you search online with a query such as 'what do lyme bacteria eat' you will find references to the bacteria burrowing through cartilage, but no discussion of what their favorite fare is.
At the twofrogscenter website is a post focussing on what to avoid.
"Since the bacteria eat up nutrients that normally go to your cells, one strategy for stopping fatigue is to stop eating foods that feed the bacteria. These bacteria like sugars, so eliminating sweetened foods, most carbohydrates, and dairy can start to deprive the Lyme of it's food. Eliminating these foods helps to limit how fast they multiply and can help to decrease their population...."
Eating healthy food is important to support your immune system, however, and that would seem to me to be more important to focus on than fasting. Your body is under tremendous stress fighting the infection, and supporting it with nourishing foods is necessary.
Lyme bacteria live in areas of the body which are low in blood flow, such as cartilage, so a blood transfusion would seem to me not useful: it is not your blood which is deficient, it is that the bacteria have set up house and are inhabiting your body. It is not a matter of eliminating toxins, but of killing the bacteria.
Think syphilis: it is a spirochetal bacterium just as Lyme is. Cure: antibiotics and potentially herbs. I would not mess around with a case of syphilis, nor would I with Lyme for the very same reasons.
Bottom line: Good nutritional support for your body and its immune system is highly important, but not a cure for Lyme.
I just came back from my doctors & although my blood test shows that I have a band showing in the test, however I have no symptom or weak symptoms of the disease. And so I asked a remedy to boost my immune system instead of going through the antibiotic treatments & my doctor suggested bio resonance therapy which is not allowed in America.
I will be starting my therapy next week.
I'll post more later & keep you updated.
Bio resonance therapy
Would you share with us which band was positive on your test?
I'm not sure how to read this but here it is anyway:
These are the bands.
Thank you for sharing the data. To my reading:
--- OspC is "outer surface protein C", which is found on the outside of Lyme bacteria, and on NO other bacteria. Thus it is a direct indicator of the presence of Lyme bacteria.
--- DbpA is a new one on me, but thanks to the internet, I have found and pasted an explanation at the bottom of this post (comments in [square brackets] are mine). The conclusion: "The use of the new antigens at presentation of the disease improved the laboratory diagnosis of NB [neuroborreliosis, meaning Lyme disease]."
The article then goes on to quantify how sensitive this measurement is, and that it is indeed helpful in diagnosis, according to the summary of the paper (pasted below) (no need to get bogged down in the details if you don't want to ... others here may also comment on my reading of the conclusion).
My view (and I'm not medically trained, so fwiw):
====>>> Your test shows you positive for a protein (OspC) found ONLY on the outside of Lyme bacteria. No other bacteria would have a positive result.
Docs sometimes want more than one positive indicator of Lyme before making a diagnosis of Lyme, but when the indicators are found in NO OTHER infection, it would cause me to go find a new doc, and take a copy of these results in hand.
Part of the problem is that some years ago, the Centers for Disease Control and one professional group for docs who focus on infectious disease (IDSA, Infectious Disease Society of America), in an effort to track the spread of Lyme across the US, set very high standards to be absolutely sure that ONLY absolute, slamdunk cases of Lyme were counted, to keep the data pure and the conclusions unassailable for epidemiology.
That makes sense for epidemiology, but unfortunately those ultra-high standards have been adopted for *clinical* diagnosis and treatment of Lyme, meaning the diagnosis and treatment of real live patients. That's bad because such a too-high standard will actually miss a fair number of true cases of Lyme, leaving those patients without diagnosis or treatment. That is the situation we find ourselves in today still, under the too-high standards of so-called mainstream medicine.
The group International Lyme and Associated Diseases Society (ILADS) is a different voluntary group for docs who treat Lyme and other diseases often carried by the Lyme ticks, and their take on the whole situation is that the too-high standards (and often faulty, outdated test structures) are causing many many of us to go undiagnosed and thus untreated.
Your doc appears to be using the higher standards and sees the few positive indicators you have to be too low to meet the high epidemiological standards. IMO, he's using the wrong standard.
--->>> There is no infection other than Lyme that will give you a positive on that band, as I understand the science. You have affirmative indicators of Lyme.
Please take these test results to a Lyme specialist who follows ILADS standards. It is what I would do, and indeed I did, in a situation very similar to yours. A Lyme specialist ran different, more accurate tests, and diagnosed me with Lyme and babesiosis. I was treated and am ridiculously well today, now several years later.
Please let us know if we can help you further -- best wishes, and keep us posted! If you need help finding an LLMD, let us know. Basically, it's to email to
contact [at] ILADS.org
and tell them where you are located and how far you can travel. They will send you back names of ILADS-member docs. (Not all docs are created equal, so if you get one that seems in outer space, try another.)
J Neurol. 2003 Nov;250(11):1318-27. [Journal of Neurology]
[Title of article:] Diagnosis of Lyme neuroborreliosis with antibodies to recombinant proteins DbpA, BBK32, and OspC, and VlsE IR6 peptide.
[Authors:] Panelius J, Lahdenne P, Saxén H, Carlsson SA, Heikkilä T, Peltomaa M, Lauhio A, Seppälä I.
Haartman Institute, Dept. of Bacteriology and Immunology, University of Helsinki, 21, 00014, Helsinki, Finland. [email address omitted here]
Abstract [summary findings]
Three recombinant antigens, decorin binding protein A (DbpA), BBK32, and outer surface protein C (OspC), and IR(6) peptide of borrelial VlsE protein, were evaluated for the diagnosis of neuroborreliosis (NB), using cerebrospinal fluid (CSF) and serum samples from 89 patients. Their performances in enzyme-linked immunosorbent assay (ELISA) were compared with that of commercial flagella antigen. IgG ELISAs were performed with three variants of each recombinant antigen originating from Borrelia burgdorferi sensu stricto, B. afzelii and B. garinii, and with the IR(6) peptide. IgM antibodies were analysed against OspC and flagella. Of the patients whose CSF contained elevated anti-flagella IgG antibodies, 93% were positive for at least three of the new antigens. Of those with negative or borderline CSF anti-flagella antibodies, 51% were positive for three new antigens. Antibodies to BBK32 were detectable mainly in early disease. Antibodies to DbpA and IR(6) were observed in early and late NB.
[The conclusion:] The use of the new antigens at presentation of the disease improved the laboratory diagnosis of NB. In IgG ELISAs, the diagnostic sensitivity of assays with the new antigens was between 75 and 88%, but was only 52% with the flagella antigen. The discriminatory power between patient and control samples appeared better in the CSF than in the serum. We suggest that assessment of CSF antibodies to at least two antigens, using either flagella and one of the new antigens or two of the new antigens, would improve the current diagnostic yield of NB.
PMID: 14648148 [PubMed - indexed for MEDLINE]
Fasting is actually counterproductive to treating an infection. While one might hold back on specific foods to reduce the amount of a particular substance that the bacteria likes, overall fasting will quickly weaken your body, especially your immune system. Better, is to fast from specific foods that suppress the immune system or cause inflammation. It's easy to find lists of the top inflammation causing foods as well as immune suppressing foods (there is a lot of overlap, such as wheat and dairy and sugar).
Researchers did recently find that the Lyme spirochetes use manganese instead of iron. The downside of trying to keep out manganese rich foods, though, is that those foods are also good at reducing inflammation. Creating a shortage in your body of any element could cause you further health problems, especially if the bacteria can continue to reproduce with just the tiniest of trace amounts.
There are a lot of health building therapies out there that help Lyme patients feel better, but none of these things are believed to eradicate the infection. Some long term patients' bodies are so messed up with a variety of problems, they just can't tolerate antibiotics well. There can also be a lot of toxins floating around that interfere with antibiotics, rendering them mostly ineffective. For those patients, addressing the other issues helps get the body ready for the fight. A better functioning system can then work WITH the antibiotics to tackle the infection. But with a low grade Lyme infection, the right antibiotics should work nicely. Undertreating it, though, just makes it that much harder to kill the next time it flares up.
I know someone who tried every non-antibiotic thing they heard might help for their child with Lyme, only trying a low dose of Doxy for a couple months after a couple years of failed efforts. (Of course that was useless, too.) They spent a fortune on alternative treatments. Finally, after three years of misery and disability and missed school, they finally went for the big guns at a well known LLMD. Poor kid. I think it's a shame they didn't go there first. Fear of abx resulted in at least 3 lost years.
Thank you! You sound so positive. The doctor I work with, most of his Lyme patients are forest workers. He tells me that 80% of those forest workers has Lyme & shows no symptoms. But since those forest workers shows no symptoms & they know they have Lyme, they are treated with bio resonance therapy to keep their immune system strong.
I agree that there are those who has Lyme such as myself and shows no or weak symptoms of the disease. My doctor says that many Lyme patients only goes through the antibiotic treatments when their symptoms becomes bothersome or is no longer tolerable. The doctor's advice is to wait for these symptoms because sometimes Lyme patients can have Lyme without strong symptoms and therefore long time therapy with antibiotics might be worst than just the lyme disease itself.
You are quite welcome.
If you don't mind, tho, I will put in one more recommendation for treatment.
Because Bb (the Lyme bacteria) are spirochetes, like syphilis bacteria, and because of their propensity to burrow into cartilage and other areas where the immune system cannot easily reach, there is a risk that once the disease is embedded, you may not be able to get rid of it easily if it does become a problem.
I cannot help but think of the stories of the mental asylums of old, where those with syphilitic dementia were held. I am not medically trained, but I also wonder about the rather sudden rise of senile dementia in recent decades and whether there may be a link of some sort to the spread of Lyme. I have read theorizing that Lyme and Alzheimer's are not related, because each affects a different type of brain structure (grey vs white matter) and thus affects memory function differently, but there may still be some connection unclear.
There are also different physical effects from different strains of Lyme. Some affect the joints terribly; others the gut. I would not want any of these, but perhaps your MD sees less virulent versions of Lyme bacteria. Given the speed with which we and our animals move around the world, the concept of isolated versions of a particular bacterium may be somewhat obsolete in any event.
Having lived through Lyme, I would not hesitate to treat it quickly and completely, not waiting for my condition to deteriorate even further than it had already. I was very ill and would not have been able to return to work (or been functional in my private life) if my symptoms had not been reversed by treatment. I was in very bad condition.
There is indeed some risk to long term antibiotic therapy, but to my understanding that risk can be lessened or eliminated by carefully replenishing the body's 'good' bacteria that are killed along with the bad. Many people tolerate the antibiotics well, and I would not want to run the risk of permanent damage by Lyme out of fear of the antibiotics.
In any event, we wish you well. Let us know how you are doing sometime if you think of it. Best wishes to you and yours --
I say above:
"There are also different physical effects from different strains of Lyme. Some affect the joints terribly; others the gut."
It should be added that many with Lyme have neurological symptoms as well, sometimes referred to as 'brain fog.' That's a good description.
I described my own symptoms as a cross between influenza and a hangover.
Hi Jackie, I will look for these symptoms in my own body. It's really good to know these symptoms. I don't fear the antibiotics or even these symptoms.
I'm in my 40's & I kind of look forward more to my Menapause especially since my husband decided that after 6 kids, he does not want to have anymore children and I've always wanted 8 ; ).
It is shocking to know that I have Lyme. The doctor can't tell when I had it or how long ago. Even for me, this was really a big surprise. I'm sad that I have it, and finding the remedy, the proper way to heal is exhausting I'm sure (a sign of its own). I still feel bless that I don't have very bad symptoms... I'm not in the position to desperately try out everything that might help me (let nature take its course) and hopefully that my body is strong enough to deal with it.
However, at anytime if my doctor suggest that I should fight against this Lyme disease using medication, I will jump to do it or will gracefully waltz my way to the hospital... ; )
The symptoms I have is mainly stress & possibly related to high blood pressure. Blood pressure runs in my family... so I would fear for my heart.
We are still trying to reach Augsburg.
I just searched online for
germany lyme disease
and got many interesting links. Try that and see if it will lead you to more information and perhaps to a good physician.
To be honest, non of the links you've been posting here are seen.
It just shows empty spaces.
At lunch break, I found out that my oldest son got bite by several ticks during summer camp two years ago. There were no symptoms, but will have him tested for Lyme.
Sorry about the links .... sometimes the computer system here at MedHelp blocks links that are usable by clicking, so I space them out like this:
contact [at] ILADS.org
In the real world, this would be
If that shows up as a string of asterisks, it's the computer system at MedHelp. I also think I wrote that URL incorrectly up above somewhere and left out the [dot] part.
We've been told recently that it's okay to post links that are not directing traffic away from MedHelp, but sometimes it's hard to tell what that might be. Also, personal email addresses get blocked out here if put into a message.
About your son and his tick bites at camp, that happens a lot -- esp. kids with strong immune systems don't notice that they are feeling a little under the weather and just plow ahead. My kid was like that. Neither of us saw tick or rash, but both had Lyme and a co-infection. I was dreadfully sick, but my kid was just a bit tired, as she said AFTER she was tested, diagnosed and treated. Strong kids.