Does this sound like acute or chronic Lyme to you?

Hi everyone. I'm new to the board with a recent diagnosis of Lyme as of today. I have to get a copy of my results, but my blood work (after 8 days) came back positive for Lyme. I am unsure about my presentation and was wondering if you could help me figure out if I'm chronic/late stage or acute. Here is my story:

Lived in Massachusetts my whole childhood. Moved to New Mexico in 2002. Diagnosed with autoimmune thyroiditis in 2006. Variety of issues since then, but felt well, conceived a baby easily with a wonderful pregnancy and no complications. He just turned three. I was on steroids for 7yrs (low dose) which I weaned off of in March of this year. All was great. I was feeling better than ever abd even started exercising. My beloved Labrador of 13yrs passed in May and I became anxious and a little withdrawn. Exercise helped. Anyway, in late June I noticed my left foot felt slightly numb, but only after exercise. It wasn't bothersome abd I actually remember thinking I tied my shoe too tight. I traveled to New England for all of July staying in Vermont, Massachusetts, and New Jersey. I did not remember having the weird foot thing while there. I returned to New Mexico on July 29 and noticed some tingling starting the 31st. I called my doc and she said it could just be from sitting on the plane and to keep an eye on it. It was pretty persistent, but got slightly better here and there. At some point I noticed a rainbow shaped rash on my back (just a third a circle) on my lower back. I didn't think anything of it. I got sick shortly after, but I honestly don't remember all the symptoms. I had a slight fever and was achy but nothing horrible and it was about a week after my son had croup. The tingling gradually became worse. I also felt more hypothyroid symptoms. Lab work confirmed low thyroid levels. We upped my meds and added LDN. However, based on recent travel, timing, and symptoms (tingling, joint pain, fatigue) my doc said we should test for Lyme. I would have never even thought of that.

Anyway, the weekend following the increase in meds, the tingling got worse. I woke up in the night and felt numb all over, but had sensation when I touched my skin. It felt really odd and scary so I called the nurse hotline and was advised to go to the er. I was having the tingling and a burning sensation on the skin on my back. I got there and waited awhile with no trouble (1am) and when they took me back, the got blood and said they were going to run some tests. While laying there watching tv thinking I was stupid for coming in, my heart rate went up to almost 200 and was beating very hard. My hands went numb. Long story short, they found no heart abnormalities after several ekg's and blood work. They thought it was too much thyroid, though they ran the wrong test. It later came back normal. The next day I got blood drawn for Lyme. It came back positive today.

So does it sound like it's acute and likely acquired this summer? Or long standing because I have the tingling already and anxiety/panic attack which I thought was a later thing? I feel like Occam's razor says it's from this trip, but what makes me what if is that I didn't have the usual early symptoms (that were obvious anyway), I already have some bad neuropathy (tingling, burning, etc) and anxiety, and there was the very slight feeling of weirdness in my left foot after exercising (but not in the same way as I experience this tingling).

Thank you for reading my novel of a post. I'm up at 1:15am feeling quite anxious about my diagnosis. I am tingling and burning as we speak. I was initially hoping to get a positive result so I could have an explanation for my symptoms and take antibiotics and be good to go. Now after googling, it seems like it's not that easy and there are lots of complications. Some stuff sounds terribly scary like heart issues or long term damage to heart, nerves, or mental functioning. I am a nervous wreck. I started on doxycycline today for 21 days. Is that the right first step? I appreciate any reassurance you can provide.

Edited to add the tingling is in all extremities, but not always at the same time. It is almost always somewhere though. It feels like vibrating and almost tickling, but very annoying and disconcerting. However, it always get worse at night and is particularly bad tonight. Tonight it is like pins and needles versus the other feeling which is kind of like the feeling you have after your foot was really cold and then is warming up or how it feels after the blood rushes into it after you sat on it funny.

Thanks again for taking the time to read my long post.

Post Edited (Elliottsmama) : 9/10/2014 1:30:52 AM (GMT-6)

Hi Elliottsmama,
Welcome to the forum. What a great doctor you have! It is just great that you have this diagnosis.

I think you will only be able to tell if this is a recent infection or an additional infection when you see how you react to treatment.

Either way, as good as your doctor is, you will need to get hold of a Lyme Literate Doctor; one associated with ILADS. They will be able to sort out your situation. You can start a new thread entitled "Seeking LLMD near (your nearest big city or region) to get help locating a Lyme doctor.

The best thing you could do at this point is to educate yourself on this disease and treatment. Looks like you've already started on that! Take a look at our "New to Lyme?" thread at the top of the forum. And you will want to make your lifestyle as healthy as possible and begin detoxing.

I just want to reassure you that as disturbing as your symptoms are, treatment will help you. Many of us have had similar symptoms and have had them resolved.

Good luck!

I spoke to my practitioner this morning. The other test she ordered was the ELISA test and it was negative. So right now I have a negative ELISA, a very low CD 57, and symptoms of extreme tingling in all extremities, some burning of my back and chest, numbness (but mostly only if I am laying down for awhile), occasional pins and needles, and other things such as anxiety, heart palps, and what may have been a panic attack. At present, I am not overly fatigued even though I am not getting enough sleep. Plus my thyroid levels are low at the moment so any fatigue I do have could be due to that and the lack of sleep. I am not overly achy and no real pain anywhere. Some muscle weakness/soreness with slight knee/hip ache, but mostly just going up stairs. My heart rate is sometimes too rapid, but not racing. Memory is definitely impacted, but that could be sleep. I can still carry on intelligent conversations, keep my attention focused for long periods of time, and eventually remember things I knew I was forgetting (usually). Specifically name recall is a big problem. I recently have experienced forgetting the name of two co-workers (separate occasions) that I have worked with for years. Granted I am on a year leave of absence, but still.

So the jury is out whether this is acute, late stage, or both, but I'm guessing it's late or both since the CD 57 was low and the severity of my symptoms. However maybe I can be encouraged that at this point I don't have pain or unmanageable fatigue and an explanation for the tingles. My doc is calling in a prescription for something (can't remember the name, but it starts with a g) that will help with the night tingling/numbness. She also actually recommended a doc in town who is a neurologist specializing in Lyme. I looked up her website and she is an ILADS member too!! I have an appt Oct 6.

In the meanwhile, I would appreciate some advice about what to do between now and then. I'm guessing I just keep taking the doxycycline until then, try to relax, maybe stop googling worst case scenarios, try to rest when I can, get my thyroid levels up, look into herbs/vitamins/supplements, and try to live my life. ]

Thanks again for your help.

Elliottsmoma I am so sorry you are dealing with this but glad you got answers right away. I am no doctor but sounds like you might of had this for awhile but with treatment you should see results. You might get alittle worse before better because of the die off but make sure you drink lots of lemon water, take Epsom salt baths and anything and everything to detoxify so your body can purge the dead toxins from the spirochete.

Glad you already have appt set up with LLMD and already a step ahead and thank God you don't have to wait long.

Keep plugged into this forum, you have very knowledgeable people, we are all going thru the same thing and this might be your best support system out there.

Sorry again that you are joining us on the journey to healing.