diagnosed 3rd stage Lyme (6y), afraid about heart and death. :(

[regula22]

Yesterday i was diagnosed Lyme disease i probably have undiagnosed since 2006 when i had tick byte in august and in november i had multiple neurological symptoms, weakness and pitting swelling on legs. They did disappeared after weeks but some symptoms persisted months and some do exists even now.


. Since then i had PVC's, EKG showed arrhythmias (and possible myocardial ischemia and possible myocardial injury, going to cardiologist) and i have many more symptoms like pain in fingers, toes, dizzy spells, eye ticks and flashes-floaters in vision)

My question is that can Lyme disease cause permanent heart disease and be ultimately fatal?

And if heart is damaged does it will recover after antibiotic treatment?

[JackieCalifornia]

Yes, I think that is exactly what happened to me:  a second tick, and it also brought Babesiosis (like malaria).  Not pretty.  Like many people, I never saw either tick, and never had a rash, but I was terribly ill.

It is indeed confusing and messy.  It is bad enough having a body that hurts, but when the infection also affects the mind and emotions, that is simply cruel.  

The thing to do is to not give up.  You may be able to find a sympathetic doctor who understands about Lyme and would be willing to treat you aggressively.  Everyone here knows how difficult and lonely it is to have Lyme.  Is there a support group in your area that you could join?

Here is an abstract of a 2004 article written about Lyme in Estonia.  Perhaps if you contact the authors they could give you some help to find a good doctor.

========================================================
Int J Med Microbiol. 2004 Apr;293 Suppl 37:174-8.
Serological description of Estonian patients with Lyme disease, a comparison with control sera from endemic and non-endemic areas.
Kisand KE, Utt M, Kisand KV, Prükk T, Uibo R.

University of Tartu, Department of Immunology, Tartu, Estonia. ***@****
Abstract

Serological tests for Lyme disease are mostly not well standardized and cases of misinterpretation of test results by clinicians are rather common. The diagnostic value of serologic tests may also depend on the seroepidemiological situation of the population. The aim of the study was to compare the immunoblot pattern of Lyme borreliosis patients and control sera from endemic and non-endemic regions and to identify the most suitable interpretation criteria for our immunoblot test. Serum samples of 24 Estonian patients with Lyme disease, 12 sera from patients with tick-borne encephalitis, 40 Estonian control sera, and sera from 50 Laplanders from North Sweden where people usually never come into contact with ticks were tested for IgG antibodies to Borrelia. Sonicated lysate of Borrelia afzelii (strain ACA1) was used in immunoblot as source of antigens. In our test system the following interpretation criteria gave the specificity of 96% for Estonian population: > or = 1 band from p58, p21, p17 and p14 plus > or = 2 bands from p83/100, p39, p34, p30 and p25; or > or = 4 bands from p83/100, p39, p34, p30 and p25. The comparison of Estonian controls with Laplanders showed that subclinical infections with Borrelia are rather common in Estonia. Also the rate of other infections, giving rise to cross-reactive antibodies, may be more frequent in Estonians. The frequent reactions with Borrelia antigens in a healthy population complicate the serodiagnosis of Lyme disease.

PMID:
    15147004
    [PubMed - indexed for MEDLINE]  
==================================================
Best wishes --

[regula22]

_I do not know when I first got Lyme, but had small symptoms for a year or two and then suddenly was very ill with it, after a time spent touring many grassy places on vacation._

As we know, borreliosis does not give immunity, it may well happened that you had another bite and acute symptoms.  That worries me too, cause blood test stays positive years after first disease is cured and another infection (especially when bite is undetected) may make things very confusing and messy....

[JackieCalifornia]

I also hope you are cured.  Lyme bacteria can lie dormant (sleeping) for a long time, only to awaken after another illness (or a second infection with Lyme) or severe bodily stress (like a bad accident) occurs.  Several people here have reported that, including me.  I do not know when I first got Lyme, but had small symptoms for a year or two and then suddenly was very ill with it, after a time spent touring many grassy places on vacation.  

How much damage Lyme can do when it is quiet in the body, I do not know, and each person's body is different in how well it holds off the bacteria.  The bacteria do live in muscle and cartilege, and the heart is made of ... muscle and cartilege, so ....

I just searched

                                          lyme cardiac

and found many interesting articles.  You may wish to do some reading to understand the risks, symptoms, etc. Again, herbal and other alternative treatments may be of interest to you if antibiotics are not obtainable on a long term basis.

[regula22]

I hope that 20 days doxy is enough for me cause after acute phase i had relatively little symptoms, i can still ride bicycle 40km on day and no joint pains. Just some shooting finger-toe pains, eye ticks, eye flashes and bad memory.  And PVC's.

My EKG results worries me most, i don't smoke, i don't drink, i do exercise and my blood pressure and cholesterol level is great...last thing i want now is that my heart is messed up because of some stupid infection that i haven't any way to avoid of...

[JackieCalifornia]

I have read that Lyme can mess with thyroid function, but don't know the details.  Thyroid problems seem to run in families, and it does in mine, so whether mine started because of Lyme or otherwise, I dunno.  But I am taking smaller than 'normal' doses now and it works GREAT.  It took a while to stabilize on it, and now I feel like regular me.

About IV treatment, I've read and heard that oral meds are often just as effective as IV, and that earlier approaches of commonly using IV are not used as often now.  In some cases, I'm guessing there are reasons to do use it, but perhaps fewer now.  That would keep the cost down for you.

[mojogal]

I have been on doxy 3 months and it actually made some symptoms worse but my high white count and sed rate came down to normal after having it elevated for 6 months that I know of,  but nobody  knew what was wrong after taking every test in the book..  Mono came back positive at the start of this worsening episode.

I still have thryroid issues that are getting worse and other neuro issues. My nurse friend who has it, says in one way, she is glad I am getting sick because it means that the little critters (as she calls Lyme/co-infections) are fighting back from the anti-biotic and it often happens to people she knows and with her own illness, that when you add a treatment, then it is not unusual  that it could become worse before getting better. In addition to being a nurse she is a counselor and since she works in the office in VA where the LLMD is, she gets many clients referred to her that have  Lyme and are depressed. I remember her telling me years ago to get tested there but that LLMD, takes no insurance for visits, or the IV treatments or any tests and is super expensive . I just couldn't afford her.