Going to first LLMD tomorrow

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Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 3/10/2009 5:35 PM (GMT -6)   
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
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 15mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|PRN Perc/Tramadol
 
 
 
 
 


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 3/10/2009 6:46 PM (GMT -6)   
Hi Vin, My symptoms always flare with the full moon. I was feeling great until a few days ago when my arm began to hurt. Last night my back was cramped all the way up into my shoulders and neck. It was a full moon! That is one way I can tell it is lyme and still with me.
I hope the LLMD will diagnose you on symptoms and not just tests as those can be so inaccurate. Other co-infections cause anxiety and panic attacks Before you go in try to write down what you can remember of your history of symptoms. Good luck at your first appointment.

Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 3/10/2009 8:00 PM (GMT -6)   
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
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 7.5mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|PRN Perc/Tramadol
 
 
 
 
 


FMS@23?
Regular Member


Date Joined Feb 2009
Total Posts : 24
   Posted 3/11/2009 4:22 PM (GMT -6)   
Goodluck Vin!!! I am a newbee here and am planning on seeing an LLMD ASAP. Hopefully you get some answers like we all want on this sight! I'll put you in my prairs tonight!

A Chronic Pain Sufferer

Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 3/11/2009 6:35 PM (GMT -6)   
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
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 7.5mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|PRN Perc/Tramadol
 
 
 
 
 


FMS@23?
Regular Member


Date Joined Feb 2009
Total Posts : 24
   Posted 3/11/2009 11:40 PM (GMT -6)   
Congrats Vin!!! That's good news to hear that you are finally getting some help that is much needed! I have a few questions for you because I am planning on seeing an LLMD ASAP and have had previous blood work and CSF work done as well. Here are my questions and thanks for the help!!!
 
What kind of doctor did you see originally for your lymes problems and who ran your western blot tests? ( I am seeing a neurologist)
 
Have you ever had a lumbar puncture (if yes what were the results)?
 
Do you have neck and back problems along w/ arthritis in joints?
 
Thanks!!!
 

Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 3/12/2009 6:34 PM (GMT -6)   
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
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 7.5mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|PRN Perc/Tramadol
 
 
 
 
 


dcordes
Regular Member


Date Joined Aug 2005
Total Posts : 389
   Posted 3/12/2009 7:32 PM (GMT -6)   
dr. s is smarter then you'll realize from his conversation as he is inclined to be quite quiet. he will listen to your complaints patiently and then recommend whatever abx or other med he thinks is appropriate. my suggestion is to let him know all your complaints and if you have questions, ask - he'll respond but he will not overwhelm you with spontaneous information.
 


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 3/12/2009 10:40 PM (GMT -6)   
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
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 7.5mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|PRN Perc/Tramadol
 
 
 
 
 


FMS@23?
Regular Member


Date Joined Feb 2009
Total Posts : 24
   Posted 3/12/2009 11:55 PM (GMT -6)   
Thanks Vin! The only band that came up positive on my western blot was band number 41. I also tested positive for the epstein barr virus w/ a strength of signal greater than 5. The reference range for a positive result to the anti body is greater than 1.10 so obviously i was extremely high! Never had mono before though... so wierd!

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 3/13/2009 9:07 AM (GMT -6)   
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.

Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 3/14/2009 5:43 PM (GMT -6)   
I think the reason he only gave me 200 doxy is because I am kind of in a catch 22 here. Antibiotics usually flare up my colitis/chrons which for me can be a life threatening situation. I didn't ask him, but i'd assume the reason im on such a low dosage is because of doxy not being as hard on the digestive tract. But that is an interesting question and i will bring it up at my next appointment if i haven't shown significant improvement by then. He did also mention that he thought i had the potential to herx quite badly..and the first two days i had brutal joint pain...now in the soles of my feet,fingers which i havent had before,worse than ever brain fog, anxiety, and tingling in my lips and my mouth. Its quite strange. Yesterday though I had a bit more energy..which is almost a miracle in itself. Today I had to cut my prednisone from 7.5 to 5mg and I am quite wiped out. 7 days at 5mg, 7 days at 2.5, then off. Every bit closer i get to zero hopefully will allow my immune system to recover a little bit more. He was also worried about my being on the prednisone and also the 6mp, but I doubt i can come off the 6mp. He said he may at some point need to consult with my GI so we can figure out how to manage both diseases without stepping on toes.

Thank you for the wealth of information you shared. My dad has been burned badly on doxy so he already warned me about the sun exposure! It stinks because I love to go hiking in the spring(prob where i got infected to begin with), but it won't kill me to cover up. He did suspect I have a co-infection of babs or bart due to my low grade fevers and high anxiety so i am awaiting further testing on that. I've read up on the yeast overgrowth and i never realized just how sick that in itself can make you. The diets recommended for yeast will be helpful for my weight as i gained about 20 lbs on prednisone and i'd like to get back to being ripped again. I am going to try the grape fruit seed extract for the yeast, and also the quercetin. I asked the dr about exercise and he said he didn't want me to exercise until I came back to see him again so I am going to hold off on that... i've already been off about 2 months now so whats another month.

Hope to see some improvements also...maybe even a recovery?? :)

Vin
History: UC/Chrons since age 22, now 27.  Several huge flares since then.  Entire colon diseased at some point from cecum to rectum.  Also had previous inflammation in terminal ileum.
Currently: flare -9/19/08 - now|Panic Disorder - 6/25/08 - now|Lyme Disease - 12/09/08 - now|Dysplastic Nevus Syndrome - 6 recent mod dysplasia moles excised, and many more to shave biopsy.
Drugs: prednisone 7.5mg|6mp 75 mg|lialda 4.8 mg|Paxil 50 mg|Klonopin .25 mg|Trazodone 50 mg|PRN Perc/Tramadol
 
 
 
 
 


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 3/15/2009 8:10 AM (GMT -6)   
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.
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