HealingWell
Search Close Search
☰

Symptoms or..?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/25/2014 6:09 PM (GMT 0)
Hi all,

Two weeks ago I started thinking I have Lyme Disease. I will describe the reason for my believe below for those interested, but my actual question is - would it be normal if one has LD to experience a change in symptoms all the time? What I've experienced the last couple of days are:

Wednesday:
- Night: Severe painfull "stitches/jabs" inside my left knee, lasting around 10 secs. each time. Happened approx. 5 times.
- Night: Constant, low level intensity, pain in the right side of my ribs.


Thursday:
- Morning: More painfull "stitches/jabs" inside my left knee. Muscle soreness in my left hamstring.
- Midday: Muscle soreness in my right thigh
- Evening: More painfull "stitches/jabs" inside my left knee. Light headache.


Friday:
Morning: Light headache.
Evening: Pain around my lung-heart region. Especially my heart felt as if there wasnt enough "room" for it. My pulse was very low (around 56bpm whilst still sitting at my pc). Starting to having troubles breathing normal - felt like my lung capacity was 1/3 of normal.

Also soreness in left thigh.

---

Could this "rollercoaster" of different symptoms be normal if one had Lyme?


Any answer is highly appreciated.

All the best

/MSCHE


---

Some background - why I think I might have Lyme:
On the 5th of October 2013 I had helped at a scout race in the forest. When I came back I had 7 ticks on my body, which I discovered the following morning. 2 of them had started to bite into the skin, but I managed to get them all out/off my body. After this incident I went to my doctor who looked at the places I was bitten, but since there wasnt any major skin reaction (only smaller red mark) he decided there was no need for antibiotics.

Nothing really happened in the weeks after the bites, and I'm also quite sure I didnt come down with influenza or other things in the weeks after.

But in November I started getting these really crazy "jabs/cramps" in my feets that would typically last for 5-10 second, where my feet would just curl uncontrollable together in a ball. The pain was every time severe. I probably experienced this 10+ times in November and the same number of times in December. My wife told me back then I should go to the doctor, but I thought it was not something to worry to much about, so I left it. Now I think this could have have been classical lyme triggered nerve pain. I have only experienced it once or twice in January.

In November I also started to get quite a severe rash on the back of my right hand. I thought it maybe was stress related, cause I had been busy at work, and just got some non prescription medicine to deal with it.

By mid December I got an extremely sore throat and both of my eyes turned into pink eyes. This lasted for about a week. I went to the doctor who thought it was a normal infection, which would go over, after some time.

In the start of January I got very sore testicals and also sore in the groin (around the lymphs). So I went to my MD. He did a check and came to the conclusion that I didn't have any lumps on my testicals, and he didnt know what it was. So I was sent home, and was told to get back, if it didnt disappear. After some very unpleasent days it leveled off, but it started to make me think back over recent months... After some google searches etc. I started thinking that all of this seemed a lot like Lyme phase 2 symptoms.

Furtheremore I have increased in weight (+5kg) since the ticks and had 3 incidents of quite aggressive outbursts (sorry IT man, taxi driver and wife). Reading about Lyme it seems that "lyme rage" can occur...

Reading about the classical symptoms on Google I went back to my doctor who did a blood sample. 5 days later I got the result (from an ELISA test I believe). It was negative. I was quite annoyed, cause I was (am) pretty sure I have Lyme, and with a negative test result my doctor is not going to give me pencillin (I got the results this Wednesday). Since then I been monitoring the weird things going on in my body and hence the question above...

Appreciate any other thoughts or feedback.

Post Edited (MSCHE) : 1/25/2014 12:20:38 PM (GMT-7)

Posted 1/25/2014 6:27 PM (GMT 0)
Hi MSCHE,
Welcome to our community! I'm so sorry that you are having to go through all of this!!

If you haven't already, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists (as Lyme rarely occurs by itself), helpful links and pdf's, how to detox when one has these infections, and a list of questions that you can ask any doctor that you are seeking treatment from!

Symptoms that change like that are definitely a sign of Lyme disease, which is part of the reason why it's so hard to pin down! You also described some very typical Lyme symptoms as well as possible Bartonella (foot/leg symptoms, rage) symptoms and possible Babesia ("air hunger") symptoms.

The ELISA is one of the worst screening tests ever for these infections - so no wonder you had a negative result. Actually there are no "good" blood tests unless it's looking for the DNA of the bacteria. These bacteria can actually avoid the immune system and that's what the majority of these tests look for - an immune response. - and they only look for 4 or 5 of the strains of the bacteria.....even though there are over 100 different strains in the US alone, 300 world wide. So you can see how it would be easy to have a less than 50% chance of having a positive test result.

You really do need to be in the care of a LLMD (Lyme Literate Medical Doctor), one that has gone through ILADS (International Lyme and Associated Diseases Society) training. We can help you find a doc if you need.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD/LLND in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

You can email Stephanie at: [email protected] You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html
Posted 1/25/2014 6:27 PM (GMT 0)
Personally, I would rather be safe than sorry. Because you had so many ticks on you, and becaue you got a negative test from your regular doctor, if I was you, I would ask for a recommendations for an LLMD in your area. You can ask on this forum and people can send you a PM with that information. It is smart of you to go after the Lyme as soon as possible, rather than wait. Going to an LLMD will cost money because they are generally out-of-network. Usually the tests that pcp docs order for Lyme are junk.  Even thoough it is more $$ up front to go to a LLMD, you save a TON of $$$ by getting after it sooner than later because untreated chronic lyme can be very expensive.
Posted 1/25/2014 6:28 PM (GMT 0)
Yes, this could very well be lyme. I suggest you get tested by IGeneX. They do a broader, more indepth test. I tested positive via IGeneX, but neg via LabCorp.

I am sorry to hear you are dealing with this, and I strongly suggest you somehow get that IGeneX blood test done.

All of your symptoms sounds lyme like, and/or possibly due to what are co-infections. I have the rage, that's from I believe Bartenella and/or Babesia. It's tough dealing with it. I'm doing better with this now that I know where it's coming from. Not easy, but not so rocket like. More like a flying saucer. : )

Please hang around, read, read the beginning of the listing "New To Lyme" as there's lots of info.

Ask questions, or vent.

Hang in there, you are not alone.
Posted 1/25/2014 6:45 PM (GMT 0)
Hello MSCHE. Welcome to the forum! I'm sorry you have entered into the world of Lyme, but I do hope you'll get to the right doctor for a diagnoses soon. The earlier you start treatments the better. Keep us posted and keep learning!
Posted 1/25/2014 6:52 PM (GMT 0)
I am so sorry you are going through this too. I wouldn't want this for my worst enemy! I'll keep you in my thoughts! Keep searching for truth!
Posted 1/25/2014 7:01 PM (GMT 0)
Dear All, thanks for answering so quick. Really, really appreciated. This place is great!

I will look into getting a LLMD. I actually do not live in the US, but in Denmark (no Danish forums anywhere as good as this one, hence why I wrote here), and very unfortunate we have no LLDM's in Denmark as far as I can gather...

I will go to my doctor and hear what he suggest, and if he is not listening I will probably either go to a specialist clinic in Germany or a special lab in Norway which apparently can do quite rigorous tests.

Hopefully that way I can be identified as positive and start getting some medicine...

I am however in New York and other places in the US on business trips now and then, so maybe a visit at an actual US LLMD is not completely impossible, in case I hit an dead end, among the possibilities here in Europe.

I will keep post in this thread on my progress, and might/prob. have some follow up questions. Once again thanks for your answers.

Have a great weekend.

/MSCHE
Posted 1/25/2014 7:50 PM (GMT 0)
Hi MSCHE,

Welcome to the forum!

I think it is a wise decission to see someone specialized, especially with the symptoms you are showing.

There are a few European members on the forum, I'm one of them, living in Belgium. You got it right, this forum is a great place!!!

There is a good lab in Augsburg (I have no connection with this lab): Infectolab.
I hope that Tickledpink will see this message, she lives in Germany and can maybe give you more information.

Be sure though that the dr you are seeing is willing to dig deep into this matter. It is complicated stuff to deal with...
You've certainly started well thinking about LD, we really need to be our own advocates.

MarieLS
Posted 1/26/2014 11:14 AM (GMT 0)
Hello and welcome :-)

Yes,there is the BCA Clinic in Augsburg which specialises in treating chronic Lyme and also does comprehensive testing.

And a naturpath in Cologne who seems to be very Lyme literate,I guess it depends what you're looking for.

If I can help you any futher or should you have any questions.............fire away,we're all here to help eachother.

Good luck

Tickled
Posted 1/26/2014 12:24 PM (GMT 0)
:-)
Posted 1/26/2014 9:54 PM (GMT 0)
Thanks MarieLS and Tickedpink. I'll start doing some calling tomorrow, and then hopefully things can start moving...

I might hold you to your promise, and get back with more questions :)

Post Edited (MSCHE) : 1/26/2014 3:09:15 PM (GMT-7)

Posted 1/27/2014 1:48 AM (GMT 0)
Hi and welcome aboard. IMHO you need to see a LLMD as soon as possible. Just the fact that you pulled 7 ticks off yourself puts you at great risk. I had some jabs and shooting pains before treatment. Good luck and wish you the best.
Posted 1/27/2014 7:00 PM (GMT 0)
I second all this. And by the way those jabs that you were talking about is exactly what I've been having for many months. They are short momentary stabs which feel like someone is sticking a knife in very briefly for a few seconds and then pulling it back out. I usually get it in small joints mostly in my toes and sometimes in fingers and healthy teeth. And I have quite positive test results for Lyme disease. So I think you're on the right track. Pursue it. Hang in there. I know a great doc in upstate ny. And I am in Holland if you need advice on Euro-American docs.
✚ New Topic ✚ Reply