What are the odds of taking antibiotics

[Kodiak1370]

My last two pregnancies I've had trouble with high blood pressure, and the other day I went to see my doctor to check my blood pressure & he suggested that I take ramilich to lower my blood pressure which maybe caused by stress.
He also recommended that I take a blood test & made an appointment for me to see a cardiologist.
As it turned out, my blood test indicates a borreliosis or Lyme disease. I have no symptoms of any of what I read in this forums, except at one time I had taken antibiotics for a cough & I had an excruciating headache after taking the antibiotics. My doctor tells me that because I have Lyme disease that I had the headache. It's been one year ago when I experienced the horrible headache that didn't go away for weeks.
Now , I am told that I have borreliosis & my doctor recommended that I should take antibiotics for three weeks.
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.

[Kodiak1370]

Hi there, I had my first bio resonance therapy treatment on Monday.
They lay a pad on my stomach that transmit electro magnetic waves into my body. It only 24 minutes. This is a once a week treatment for 2-3 months.
I was also prescribed teasel herb to go with the bio resonance therapy treatment. At home, we purchased a sauna to help detoxify the body by sweating more. Of course I can easily achieve sweating by cycling 3-4 hours a day. I believe that detoxification can help my body, I added more lemon water in my diet. So far, I feel good.

[Kodiak1370]

Hi Jackie, it's a beautiful day here & am about to go on a bike ride up the mountains. I called the Augsburg center. They are on vacation - their office is closed until August 24th. I will keep trying. Also will talk with my dr. again tomorrow.
Will be back here again soon.
Thank you for sharing.

[JackieCalifornia]

If you are willing to ask you doctor to go to the ILADS website and read there, including especially Burrascano's treatment guidelines, it may help.

It may not, but no harm trying.

If you can get to BCA in Augsburg, that is where I would start, simply for lack of knowlege about any other known Lyme treatment centers in Germany.

I don't recall now if we suggested that you email to ILADS and ask for member names located in Germany.  The email for that query is

contact [at] ILADS [dot] com

[cave76]

I mis-typed above.

I wrote:
"Then I moved to a state that will not treat for Lyme disease (unless you have a bulls-eye and then just for about a year.)

I meant treatment would only last for about 30 days!
(My how time flies! LOL)

[cave76]

I was bitten many times but never got a bulls-eye rash and felt fine---- for several years.

Then I 'crashed' (overnight) and went from a healthy and fit person to someone who could barely get out of bed to use the bathroom.

That went on for more than a year while I was dx'd with chronic fatigue or 'depression'. (Snort!--- who wouldn't be depressed? LOL)

I finally found a doctor who tested me (Igenex) for Lyme and then started me on oral abx.

[Now, here I'm going to have to put in a disclaimer: What helped me may not necessarily help you or the next person! There are a bazillion reasons for that and you don't want to read them--- now.]

I was started on Biaxin and gradually got better over a period of 6 months. I could finally start driving myself to the grocery store.

Then I 'leveled' out and didn't get better, didn't get worse.

Many years of many different kinds of antibiotics. I won't bore you with the timeline or a list of them except to say that one of them was 17 months of IV Rocephin.

I was doing 'o.k.'. Just o.k.

Then I started IM bicillin LA. Took it for about 4-5 years and achieved a marvelous remission.
Then I moved to a state that will not treat for Lyme disease (unless you have a bulls-eye and then just for about a year.)

I regressed. And that's where I am now. Regressed.

You may not think that my history doesn't pertain to you since I was sicker than road kill and you feel fine.

Not true. Think what my story might have been if I had been tested and treated BEFORE I collapsed! When I had Lyme but no one tested me or treated me for it.

Just think.

[JackieCalifornia]

We're happy to share ... what you might find is that Lyme and its co-infections are so complex and such a puzzle to many MDs (even LLMDs) that different treatments are quite common.

I think the most 'mainstream' approaches are medicinal, using antibiotics.  Which antibiotics are used depends on the co-infections and also on the particular LLMD's approach.  

I was diagnosed with Lyme and babesiosis (similar to malaria).  I was treated with antibiotics:

-- First, for babesiosis:  Zithromax and Mepron, for ~5 months

-- Then, for Lyme: Biaxin and Omnicef, for ~6 months, then Zithromax and Flagyl, for ~6 months.

Everyone is different, and every doc's approach is different, so a different approach is not necessarily wrong.  My treatment was several years ago, and the current thinking may also be different.

[Kodiak1370]

I went into the ilads site and I watched a few videos.
Those of you here who went through treatments.... please let me know what kind of treatments did you take? How long was your treatment?
What is your condition today? Are you healed now?
I don't want to know about your experiences of being misdiagnosed.
I want to know the treatments you've had that really lead you to become better. Please kindly share with me your day to day experiences with those treatments (if you still remember) or is still going through a treatment.
It's not enough what doctors say, not enough is said with those videos in ilads. I don't know anyone who has Lyme... I thought of asking my doctor to introduce me to his Lyme patients. I don't know people who had this disease, had treatments & overcame it (became better). As I watch out for my symptoms, U want to meet these kinds of people as myself.
Please let me know the treatments that worked for you, your daughters and son's, your spouses and parents. I appreciate. Thanks!

[Kodiak1370]

I was out cycling today for 4 hours & watched the sunset by the Rhein.
We had flood here recently in Germany and for about three weeks, the city closed the flood gate. As I was having my wheat beer (malt/hop beer), I looked at the high water of the river & across it, the forest (our cycling road) is still wet (damp & muddy). I imagined ticks living in that forest & for the first time, I couldn't enjoy my beer & cycling on those trail roads.
I love the outdoor but the worries of Lyme disease just creeps into my beautiful world of wondrous nature. I felt kind of sad, but I will go out there again tomorrow since the weather is promisingly on the high 30'c.
And on Monday, I will get my first treatment of bio resonance therapy.
I don't know what to feel tomorrow or when the symptoms of Lyme sets in like the dark after the sunset... in the meantime, thank you all for all your supportive messages! Goodnight!

[Claire_MHModerator]

Hi, folks,

We don't allow posting of email addresses in any case, but many links to valuable resources are permitted.  ilads.org is one of them, in fact.

If you're ever in doubt about posting a link, please feel free to contact us, either via PM or by using the "Contact Us" link at the bottom of every MedHelp page.

And now, back to your regularly-scheduled discussion... :)

Claire

[cave76]

LOL---- very clever. Do we have to cross our eyes and fingers and throw salt over our shoulder too?

That was intended as a joke. Maybe not very funny but it's a joke. :)
I think that Jackie offered very good advice, as she mostly does.

[JackieCalifornia]

ah-HA!  See?  the computer system blocked the email address I typed above.

In the string  

                     contact    [at]      ILADS.org

replace [at] with  @  

replace [dot] with   .

and remove all the extra spaces

and then you'll have a functioning email address.

[JackieCalifornia]

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.

[Kodiak1370]

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.

[Kodiak1370]

To be honest, non of the links you've been posting here are seen.
It just shows empty spaces.

[JackieCalifornia]

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.

[Kodiak1370]

We are still trying to reach Augsburg.

[Kodiak1370]

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.

[Kodiak1370]

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... ; )

[JackieCalifornia]

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.

[JackieCalifornia]

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 --

[Kodiak1370]

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.

[Ricobord]

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.

[JackieCalifornia]

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]
-----------------------------end--------------------------------

[Kodiak1370]

I'm not sure how to read this but here it is anyway:
OspC- b
DbpA
These are the bands.