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Lyme Disease
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Posted 5/14/2015 7:00 PM (GMT 0)
Hi, I was diagnosed last week with Lyme (using Western Blot) and I started antibiotics 4 days ago. I am headed to my primary doctor tonight for a follow up. She does not know much about Lyme, but is very open-minded and has been great so far- so I need to be active and speak up for what I need and want to have done. I have booked appointments for Cardio, Neuro, Gyno, Endo and Ct Scans (she's thorough). My symptoms are dizziness, no period for 4 months, heart palpitations, tinnitus, back pain, food sensitivities, and probably a few others I can't think of at the moment. I am thinking I want to have blood work done again to see if my body is reacting to antibiotics/ see if anything has changed since two weeks ago. Should I have the Western Blot done again? Are there specific tests that I should ask for? So far I've only got the Lyme diagnosis and antibiotics, Im not sure what to do next and I am pretty sure my doctor isn't sure what comes next either.
Posted 5/14/2015 7:19 PM (GMT 0)
This is what I would do (after doing many of the things you have listed):

1)cancel all the appointments with specialists - you will save time and money (I saw 7 specialists over a couple years - every single one told me that I was fine: cardio, 3 neuro, endo, gastro, ortho).
2)forgo the CT Scan unless there is another process your primary is concerned about
3)read the "new to lyme" page here: https://www.healingwell.com/community/default.aspx?f=30&m=1606610
4)find a lyme literate MD (and with the LLMD consider the Igenex test (I would not spend $ to repeat the W blot)

This is simply what I would do - not necessarily what you should do, but I spent so much time and money looking in the wrong places. You are blessed to have had the W blot come back positive (I had 2 false negatives that steered me in wrong direction before a friend told me to get an Igenex test).
Posted 5/14/2015 7:21 PM (GMT 0)
Hi Cesq,
Sounds like you have an excellent Dr. But since she doesn't know much about Lyme - you really should consider seeing a LLMD for treatment.

There really isn't any point in having a WB done again - you have a lyme diagnosis. Another WB won't tell you if the antibiotics are working.

How long is your prescription for? Hopefully for many weeks.

Regarding the other specialists/tests/scans - If it gives you peace of mind to rule out other things, then go ahead. I think with heart palps you might want to keep the cardio appt.
Posted 5/14/2015 7:27 PM (GMT 0)
3 weeks on doxycycline, is that a typical treatment?
So isn't any further testing I need right now to see if anything has changed?
Posted 5/14/2015 7:53 PM (GMT 0)
Three weeks isn't long enough to treat.

There currently isn't a test to tell you if you're lyme is in remission.

It's based on symptom resolution. Some LLMD's use the CD57 test but many find it's not reliable.

If I were you - I would find a LLMD and schedule an appt. Then I would see if your Dr will give you more abx to treat you until you see the LLMD.
Posted 5/14/2015 8:02 PM (GMT 0)
I'm going to echo the others and say find a LLMD. 100 specialists won't help you if they don't understand Lyme. All those symptoms could be lyme related.
Posted 5/15/2015 12:02 AM (GMT 0)
LLMD is the way to go.

With regards to finding one, many here would be happy to guide you in the right direction.

Also, how long have you had this Lyme? How long have you had symptoms? Did you just get bitten the other day and then get it immedietly diagnosed? If you caught it almost immediately, you are a lucky one and it is my understanding that 3 weeks of abx will take care of it in all likelihood.

However, if you are like many of us who did not find out about it for a while, you have a much longer road ahead of you, and in which case you definitely need an LLMD. But it is possible to get better, and many on here are 99% symptom free living proof.
Posted 5/15/2015 2:11 AM (GMT 0)
I have no idea when I got bit. I honestly don't think I was ever bit. If I was it was probably last summer. Its hard to tell what symptoms are Lyme related and what aren't. It seemed like stress was causing all of the issues for a while. I just finished my first year of law school, so my whole family pretty much thought I was making myself sick with stress and overworking myself. But I haven't felt right since at least January. I think depression was the first thing and then my period stopped in Feb. Other random things that I brushed off through the months too.
Posted 5/15/2015 2:54 AM (GMT 0)
CesQ, if you have insurance and they will cover the cost of doctor visits and tests, I strongly recommend that you keep your appointments. Although it is true that their lack of knowledge about Lyme can limit what they can do to help you and at times can impede your recovery, they can be of use as you progress in bettering your health.

If you have insurance, specially HMO, there are tests that only a specialist can order for you. They (insurance) will not cover them if requested by a PCP. It is also helpful if you build up a history with these specialists should you need to apply for disability or financial assistance down the road. It will show that you were ill and needed their specialty care. It carries more weight than if all you saw was your primary doctor.

As far as tests; Lyme seems to entice other pathogens to join the party and for this reason many Lyme patients will often test positive for:

EBV (Epstein–Barr virus)
Anti-TPO (Anti-thyroid autoantibodies)
CMV AB, IGG (CYTOMEGALOVIRUS)

Your blood work tests may also find abnormalities with:
Vitamin D
Vitamin B12
Blood cell count
NEUTROPHILS (because of immune system involvement)
T2, T3 (free and total)


As you can see, there are tests that although not specific for Lyme and co-infections, they will show that there is an infection in your body and you can use the tests that you do today against some in the future to gauge your condition.

I too saw a Cardiologist, Neurologist, Endocrinologist, Infectious Disease doc, Gastroenterologist, rheumatologist, ENT, and a number of PCPs when I first became infected. I have insurance so the cost was minimal. However, the peace of mind that you get knowing that your heart is fine and that there is no tumor in your brain is priceless, specially when your whole body is falling apart. Trust me, I have been there and often wonder how can the body put up with so much.

Anyways, welcome to the site and hopefully you and your doctor can work together to get you in good health again.
Posted 5/18/2015 4:14 PM (GMT 0)
Making sure that Lyme and it's co-infections is all that you are dealing with is a good idea in my opinion. Although, make sure that you are going to the right doc - Endo's for thyroid issues aren't always the best choice.

Just remember that Lyme can be diagnosed as many things, so don't let those doc's send you off on rabbit trails leading you nowhere towards actual healing from these infections. It will be most likely that they know nothing of Lyme, although they will think they do.
Posted 5/18/2015 8:22 PM (GMT 0)
After reading Healing's advice, I actually reverse my position and agree with that. It is very true that a weight is lifted from your emotions when you can truly cross certain things off the list. If for no other reason (and you can afford to do it) that is enough to keep your appointments. I'm sorry to be a frustrating voice if I indeed that was the case with me flip-flopping here.
Posted 5/18/2015 9:50 PM (GMT 0)
You still had a valid point though, Berean. No other doctor other than a Lyme Literate one is really qualified to help people heal from these infections.
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