Going to first LLMD tomorrow

Going to see Dr. S tomorrow in howell, NJ.  supposedly has a very good rep.

Its weird..i was feeling a bit better last week for about 6 days..and then as of yesterday i feel like death again with joint pain, major fatigue, chills, anxiety, brain fog.  Ugh..wonder if this is the infamous lymes cycle?

Anyway, seeing as i am having some nasty brain fog im not as sharp as i usaully am.  What would some good questions be to ask the lyme doctor?  I know hes going to use the igen testing lab to confirm i have lyme, etc. 

I am planning on bringing my medical history with me, as well as the patterns of illness that ive noticed since june of last year when i started getting sick.

Ugh, I am truly hoping that the root cause of all my miserty for this past year is lyme, and i'd be downright pretty pissed off and discouraged if he comes back and says its not and its something else!  Then I'll have no idea what the heck is going on and back to square one :(

Vin

That is very strange indeed! What medicines are you on for lymes..and how much have you improved since diagnoses and treatment if you dont mind me asking?

im sure at one point in my life i've had lyme. i have a positive titer of i think 1.89 and 4 out of 10 bands(18,23,41,58) on the western blot IGG, 1 out of 3 on the IGM(41) I think it is.

I guess my only real question is.. is it an active case that I have? Not sure how that is determined. But i'd love to know exactly what I am battling here.. and if its lymes it will really not be cool but at least ill know what i have.

Vin

Thanks!

Well i got back from my llmd today and i was quite satisfied with how thorough he was. He said based on my labcorp western blot i definatly have lyme. he said he needs no further testing. he is going to test me for the other co-infections. but he said i have a classic case with the exception of no known bullseye or specific tick. im taking 200 mg doryx for 30 days... not sure if its the same as standard doxy other than it being extended release. he told me to expect some nasty herxing. he also thinks i might have a co-infection of bab or bart, but i have to wait 4 weeks for the igen texting.

he also found that i have yeast in my system and a heart murmur to boot which i never knew about before! was very thorough and knew his stuff. answered all my questions. So today i popped in the first doryx, and i'll see how it goes :)

Vin

i saw my GI actually! he tested my lyme titer and we saw that it was high. I then went to see my primary care physician who decided to treat me based on my titer score before doing a western blot. I actually improved then. but a 2 months later after i finished my treatement i was sick as a dog, and he did my western blot which he said was negative. But he didn't tell me what bands were positive or how many. he did say that being on prednisone and other immunosuppressant drugs could be masking things so he wanted me to see an infectious disease specialist. I instead went to a LLMD who i thought could treat me better.

if i were you even if the neurologist says your negative.. ask for a copy of the western blot and see which bands you do have that are positive if any.

i havent had any back problems but sometimes i get stiff neck.
never had a lumbar puncture and that definatly sounds painful.

ask away and i will tell you what i know.

Vin

I did notice he was very smart. I asked some very intelligent questoins about the latest lyme treatments and made several comments about certain things and he was right on key with what i've read plus added more things that i wasn't aware of. I was quite happy with him and how confident he seemed with his knowledge of the disease. I think I am finally in good hands :)

Vin

Hi Vin, I am surprised that he only gave you 200mg of doxy as that is considered too low for lyme. The recommended amount is 300-600 mg, depending on body weight. Perhaps he is trying to avoid a serious herx reaction and will increase it later.
Prednisone might have supressed your immune system making it harding to treat the lyme. You will not always test positive when you have co-infections so it is important to make clinical decisions based upon symptoms, not just tests. There are many strains of all the bacteria but the labs only test for a few of them. Bartonella like organisms are often responsible for serious depression and anxiety (know this first hand). Doxy is the first course of treatment because it also kills erlichea.
Be careful of sun exposure as you can burn easily after you have been taking doxy for a month. It can also cause acid reflux, so eat when you take it and do not lie down for about an hour.

It is important to eat healthy avoiding all sugar, alcohol, smoking and most carbs (with high glycemic index). Some of the recommended supplements are magnesium, B12, B6 and zinc because lyme depletes them. Yeast is a problem so you need to take a pro-biotic twice a day, not within two hours of the abx. If you take grape fruit seed extract it will help to kill yeast overgrowth and it also kills the lyme cyst. If you have a lot of die off with pain and mental fog, quercetin can quiet the inflammation and reduce swelling. The way I understand it, the brain not getting enough oxygen and nutrients because of restricted blood flow can cause the brain fog. When you feel better, vigorous exercise to increase oxygen and raise core body temperature is strongly advised every other day. The lyme bacteria cannot survive in an oxygen rich environment and heat also destroys it which is why your body temperature is lower when you have it.

You will be rotated from drug to drug becasue the bacteria become resistant. You will also need different drugs to treat different forms of the bacteria as well as different co-infections. Some drugs work better than others but are not well tolerated. Herbs can help but the bacteria also build a resistnce to herbs so they need to be rotated as well. It is best to get the infection well under control before you try to take an herbal route especially when you have been very sick for a long time. I believe each time you relapse, the remaining bacteria become more virulent. General rule of thumb is to go at least 2months symptom free before quitting abx. I quit early, went on herbs and relapsed.
All of the drugs I have used have helped me. They include doxy, Ketek and amoxicillin for lyme. I am going to start plaqenil for the cyst form soon. I use Levaquin for BLO.

Hang in there and I hope you see some improvement soon. Take good care of yourself.

After I had been on doxy less than two months nothing could protect me from the sun including sunscreen and sunglasses and a hat. anything reaching the sun burned within minutes - so be very careful. It sounds like you might have bartonella which causes the soles of your feet to hurt especially in the morning. Your abdominal problems might also be connected to bart. It is hard to figure out what is what because the tests are unreliable and there are a lot of strains the labs do not even test for. This is all very frustrating to deal with because recovery is such a slow process for a lot of people. I don't know what your journey will be like but for myself the beginning of treatment was hard as I herxed badly. Later on I just had set backs but nothing that I could not deal with. A lot of the time my 28 day reminder that I was still infected was just a lot of twitching and cramps in my muscles. It is really smart of you to immediately seek the help of an LLMD. Good luck again.