New to lymes, interesting symptoms

Was diagnosed on June 23, started 21 day doxy. One of the things I'm trying to figure out is how long I've had it. I remember a tick byte but it was months ago, last summer I think. I'm out in the woods a lot, fishing - most weekends (well, not recently!).

Now, about symptoms: I have had either two phases of symptoms from lymes, the first lasting years, and the next phase since about june 12 OR I have two different problems - lymes and something else. I'd really like to know which is the case.

Symptoms phase 1: have had for around 5 years: periods of strong dizziness, nearing feinting, lasting about 5-10 minutes. I had maybe 6 of these in 5 years, sometimes while walking around the house, sometimes waking me up at night. I think they were always in the evening. It felt like I was losing oxygen to my brain. A couple times I started getting tunnel vision.

Phase 2 started recently, about 3 months ago. The first episode, the only symptom was my vision became fractured - as if looking thru mirrors. This happened very suddenly, while at the dinner table. This lasted about 10 minutes. The next incident was on June 12. I was out fishing, standing in the middle of a creak about 100 yds wide. My vision became fractured again - I literally couldn't tell where the shore line was. I also became quite dizzy and a bit nauseous and had to kneel down to keep from falling. This lasted again about 10-15 minutes. This was a very bad episode. I felt kind of sick for the next 24-48 hours.

Blood test came back on june 23, was positive in all bands on that test. From June 12 to about 3 days ago, I had daily episodes of dizziness, often brought on by simply trying to walk some distance (anywhere from 50-500 feet), but none as severe as june 23. I've had no more vision issues. I also get mild numbness & tingling in my left arm sometimes.

On July 2-3, I started feeling pretty good. Thought the Doxy was working. I went for a walk of about 10 blocks - wow, I was thrilled! I had very little symptoms for two days.

But, last night had a major episode of dizziness. Along with this dizziness, I get these really weird sensations. Like drugs rushing thru my brain. I managed to check my pulse toward the end and I find I'm basically skipping beats. I know because eventually it started suddenly beating regularly and I started to come out of it. It feels like I'm gonna die, except there is no chest pain or any pain. Today I feel tired again, and have gotten dizzy a couple times.

What seems odd to me is, first, the visual distortions. Second, I don't seem to have any, or much, classic symptoms like achiness, joint pain, etc. In fact, thankfully, I've had no pain at all. I do get some nausea sometimes, and flu like feeling.

I'm curious what others think, or if you've had similar symptoms.

Thanks! (and hello to fellow sufferers)

Welcome dslymes -

21 days of doxy will not be sufficient to treat your infection.

Your next move should be to find a Lyme Literate Dr. (LLMD) - and take your test results to your initial consult.

You are going to need more than just doxycycline to treat the infections(s) - you most likely have more than Lyme - as lyme rarely travels alone. The likely co-infections that may need to be addressed: Bartonella and/or Babesia.

If you need help finding a LLMD, you can start a new thread titled :"Looking for LLMD in/near_____" and fill in the blank.

I'm glad you found us here - great group of people for support.

Another welcome!
Good advice already shared. The more you (re)learn about Lyme the better off you are... And don't hesitate to so any questions!

-p

As the others have said 21 days is not sufficient.

Obviously because you are not well yet, right? That is the first clue.

recommendations from Burrascano is this -

EARLY LOCALIZED - Single erythema migrans with no constitutional symptoms:
1) Adults: oral therapy-must continue until symptom and sign free for at least one month, with a 6 week minimum.

I think you have to copy and paste in order to see this. http://www.lymenet.org/BurrGuide200810.pdf

It is on page 19 and this is the recommendation for EARLY lyme. Page 20 goes on to say what is necessary for lyme that has been there for longer than a year.

The guidelines that PeteZa posted are for Early lyme - with only symptom being the EM Rash.

You would be considered to have disseminated disease - vision issues, dizziness, arm numbness and tingling, irregular pulse.

Here are the guidelines for early disseminated:

EARLY DISSEMINATED: Milder symptoms present for less than one year and not complicated by immune deficiency or prior steroid treatment:
1) Adults: oral therapy until no active disease for 4 to 8 weeks (4-6 months typical)

Usually LL Dr.'s will prescribe 200 mg twice daily of doxy. Some will start with the 100 mg and then increase after a few weeks.
You are looking at months of treatment, not a few weeks...unfortunately.

Oh, and welcome the forum. The people here are a great resource!

I'm still new to lymes, but I can provide some information that I think may be helpful regarding health care in general. Many people simply accept what their doctors tell them. So many people do this that doctors are making decisions on their own that should involve the patient (risk/reward decisions). On the other extreme, some avoid mainstream health care all together. These are the easy paths to take, but are not the way to go. Many of you on this board probably already know this. That is why you are here and spend the little precious time we have in life researching these complex, dry and frankly boring topics.

One thing I would suggest would be to become familiar with the terms NNH and NNT. Understanding them can help you to understand the forces driving the decisions that doctors/patients need to make when deciding on diagnosis and treatments. I first read about this in the book Primal Prescription (Murphy,McGuff). Bottom line is that drugs are like shot-guns: shoot and hope it hits the bad things and misses the good. It's never that simple in the real world. Drugs have consequences. (also, using NNH & NNT in google searches in conjunction with other health terms can help you to find studies and other info you might otherwise miss)

Another important concept we have to learn and accept is that humans are not robots. We are driven by incentives and we are emotional creatures. Financial incentives affect doctors decisions - we have to accept that. I will give a personal example that illustrates. At a recent family picnic, we got the standard lecture "don't forget to get your colonoscopy!" (heard it from Katie Curic right!). When you have doctors making small fortunes on one specific treatment and mainstream media players pushing something, it's time to be careful. When I asked this family member about NNH stats, risk of bowel perforations, and allergic reactions to preps, I didn't get much response. I personally had a reaction to the miralax and/or reglan I was prescribed. The reglan had an FDA warning on it, which I was NOT told about. Instead, I was left scrambling alone at 8pm in the evening with my mouth and throat itching and swelling up.

I also was not told of other potentially cheaper & safer alternatives to the standard colonoscopy. This GI office is set up with offices on one side and surgery on the other - the goal is to turn cheap office visits into high-priced procedures. In addition, I went in complaining of pain at the top of my stomach and was looking for an esophageal endoscopy. Dr. talked me into the colonoscopy. Now I have neither because I couldn't finish the prep. Bottom line, be careful out there. I'm thankful that doxy is cheap so these financial incentives are not really present.