Lyme Uncertainty

So, first off: I don't have an obsession about having to have a Lyme Disease - it's just a possibility i would like to explore as thoroughly as possible. I'm also well aware that i can't get a definitive diagnosis from a internet forum - i would just like to hear some opinions concerning my situation from people who are familiar with the disease.

That being said, i'll move on to my story:

In summer 2009, i started experiencing something i called "physical depression" (meaning that there was no mental reason for depression - i just could feel it in my body and mind) nd i was fatigued. That was accompanied my a sense of pressure in my head and some weird stinging sensation in back of my head. I also had enlarged lymphnode under my chin which was tender. Even then, without knowing anything about Lyme Disease, i thought it was a weird condition to have since it didn't feel like a normal flu (which is something i haven't even experienced in many years) - not knowing about Lyme, i couldn't connect those symptoms to a bite / sting i had had in my penis after sleeping in a tent a couple of weeks earlier. I assumed it to be a casual mosquito bite - which it could have been, but i have to bring that up since the timing between the bite and symptoms is somewhat perfect, so it's a factor. I didn't have a bullseye rash though, in which case the Lyme would be pretty much confirmed.

The weird feelings pretty much subsided over few weeks from their appearence, but to make things little more complicated: I had a sexual encounter few weeks after, which bringed or seemed to bring (since not knowing about Lyme, i connected the symptoms immediately to that sexual encounter) a new set of symptoms: i had some rash in my penis (near the area i had been bitten / stung by some bug a month earlier) and nerve / joint pains in my legs. I also experienced a burning sensation throughout my body.

Shortly after this, i started to see many eye floaters which was unnormal considering that i had never seen them previously. I saw them for some time and they seemed to have gone awat to the point i had forgotten them...

In January 2010, half a year after my first symptoms, i started to experience weird electric-like vibrations through my body. If they had been more severe, i think they would have been seizures. This happened mostly at night and sometimes there were periods it went away for some weeks and came back. The severity seemed to vary from mild to pretty severe. I also experienced some weird panicky rushes to my head along with these vibrations. So i had those vibrations for almost a year on and off, and haven't really experienced those for a while.

In May 2010, my worm-like eye floaters came back, and they were more severe than they had been in summer 2009. They appeared to both eyes at the same time. They haven't really gotten worse but they have stayed the same, with some spontaneous, temporary new ones appearing. I think this is due to "normal" (since the mechanism is normal) vitreous opacification - which to my understanding can be caused by Lyme Disease.

In 2010 i also experienced numbness of legs and a 3 month period when the left side of my lower lip and chin were numb / had this annoying crawling and stinging feeling in them - that went away although i can still sometimes feel those sensations "knocking on the door"

I have been to 2 opthamologists for my eye floaters and MRI for my neurological symptoms but nothing unusual has come up. I also had many blood tests taken a couple of months ago, including Lyme, and they have all been negative. I had one Lyme ELISA test before, in August 2010, and it was borderline IgM-positive: when 0-9 was negative, and anything from 12 up was positive, my number was 11. That wasn't examined any further except now when i couple of months ago went to the doctor again.

I think my story here is somewhat vague, but additional questions are welcome. Maybe i could also add a "complete" list of symptoms i've had during this period:

- Fatigue, "physical depression" , fogginess
- Pressure in my head and a sense of stinging in the back of my head
- Genital rash
- Nerve sensations in my legs and knee joint: stinging, cramping, crawling, numbness, pins and needles. These can be felt from my lower back through my legs all the way down to the foot
- Electric-like vibrations in my body, sometimes through the whole body from head to toes
- Stinging and cramping in my lower spine, which is accompanied by the leg sensations i listed
- Eye Floaters in both eyes


The nerve sensations in legs and genital rash could for exmple be genital herpes (which was negative in my blood test though) but the co-occurrence of these kind of symptoms which have almost all been associated with Lyme Disease (neurological symptoms, eye floaters, previously experienced illness which seemed to "start it all") is very strange and not That likely to be a coincidence. So any thoughts?

[JackieCalifornia]

Welcome to MedHelp.  I am sorry to hear of your illness, but you have a very good thing in your favor:  you are a good observer of your symptoms, and that is very valuable in finding a diagnosis and treating your illness.

I am not a doctor or medically trained, so these are only my comments based on having Lyme myself for several years.

All of your symptoms are found in Lyme disease.  Every person has a different set of symptoms, but yours are a common grouping.

The MDs (Medical Doctors) you have seen are probably not trained to recognize Lyme, and many MDs rely too much on tests to diagnose Lyme.  The tests are not very good, but MDs now are trained to look at the paperwork and not at the patient.  For example, an ELISA so close to the 'positive' mark combined with your history and symptoms would likely cause a Lyme specialist in the US to diagnose you with a positive result and to begin treatment.

I understand tickborne encephalitis (TBE) is found in Sweden, and those same ticks may carry Lyme.  I assume your MD has ruled out TBE, that is, determined that you do not have TBE.  Ticks are like little sewers and can carry a number of other nasty diseases too.

Have you searched "Sweden Lyme" online to locate support groups, referrals and MDs or medical centers which specialize in Lyme?  I just did that search found many promising leads.

In addition, an article posted on the ILADS [dot] org website has a footnote referencing Swedish research:

"Ekerfelt C, Ernerudh J, Forsberg P, et al.  Lyme borreliosis in Sweden -- diagnostic performance of five commercial Borrelia serology kits using sera from well-defined patient groups.  APMIS 2004; 112:74-8."  I believe APMIS is the abbreviation for the publication Acta Pathologica, Microbiologica et Immunologica Scandinavica.  

More important than whatever that article says may be its help for finding a Lyme specialist MD, if you are unable to do so otherwise.  In some countries, the only thing harder than getting a Lyme diagnosis is finding an MD who understands Lyme.  

You may well hear from many well-meaning people and MDs that anyone who thinks they have Lyme is simply obsessing, and perhaps you have heard that as well.  I personally saw about 20 MDs before being diagnosed with Lyme and another disease carried by the same tick.  I was profoundly ill, but none of these highly trained and experience MDs could understand what was wrong with me.  One of them did test me for Lyme, but when the test result was positive, the MD said I could not possibly have Lyme, because I was not 'near death' as her Lyme patients were.  If death is a requirement for a diagnosis, then we are all in big trouble.

MDs who do not specialize in Lyme do not understand the range of symptoms, and do not understand how to read the very inaccurate tests that are available.  That is why I would, in your situation, find a Lyme specialist for a medical history of your symptoms and for testing.  Only Lyme specialists know how to read the tests -- and Lyme specialists also use tests not used by the regular MDs.  If you go to the website igenex [dot] com, there is a description of the testing they perform, on an MD's orders.  The CD57 test is important, because it is specific in Lyme, meaning it reacts only to a Lyme infection.

The ILADS website will have much information of interest to you, because the more you know, the more you will know whether your MDs are asking the right questions.

Please let us know if you have any questions, and also let us know how you do.  We are all inspired by good news.  Best wishes --