Went there, was very scared as I am scared of all doctors, but must say nice office and the staff appeared to be rather friendly.
They do take Insurance so all I paid was my copay.
After filling out some paperwork in the waiting area, the nurse then checked my weight, height and blood pressure.
Then the doctor came into the exam room.
I brought with me and showed him my very recent blood work test results from two test labs.
One was from Lab Corp and the other from MDL.
While only the LabCorp showed a very low CD57 score of 44, Both tests picked up the Band 23 Present Only.
The both blood tests also picked up the High numbers of EBV and HPS.
The blood tests were done about only a week before the visit to this doc, so logically speaking I assume that was the reason the doctor never did any blood work while I was there for this first visit.
I explained to him that all summer long I did have a very itchy rash all over my stomach and chest area but I thought it was from maybe bad detergent and soaps which I kept switching on but that did not help.
And also I told the doc that at about 15 plus years ago I had experienced what appeared to be a Bulls-Eye rash on my right arm, noticed it from sleeping in a Motel in Wildwood NJ while partying there with friends.
My mom back then dismissed it as that I just perhaps slept on some dity sheets and got some itchy stuff from that, since back then noone knew what the heck Lyme disease was.
And I told him that I noticed there was a tick crawling on me about 5 years ago after a fishing trip in MD which I noticed in the car, crawling up my leg, so I just took it off and threw it out the window, a little black bugger.
He appeared to be knowledgeable on Lyme disease, and clearfly stated that I did have contact with Lyme at one point or another based on my tests and the rash.
He checked my eyes, and mouth as well as listed to me breath, and felt my currently swollen lymphnotes in my throat area.
But for some odd reason we spoke not a word about Coinfections though that was perhaps a HUGE mistake on my end.
I did tell him my experience prior to that, how I woke up very stiff a few months ago, and in pain, after being put on Doxy 100mg for two weeks by a Dermatologist, for an ingrown infection under my armpit, like a Huge pimple with puss, then my mistake was to allow someone at work who had severely and painfully streched out my neck and then my symptoms were all set off,... the very next day, the sensitivity to light, the vomiting in the heat, the pain all over my upper body and neck and pressure in rear of my head, the headaches and the sleepless nights, blurry vision, muscle aches, joint pains, tingling in my arms and numbness at times, at times tired and sleepy, and ringing in the ears, all which lasted for about a month. (still have some but light symptomps)
I also told him that I did fall and hit my head some time prior to that, so the bad discs in my upper neck could have been as a result of that fall, and prior, or maybe due to the painful over-streching of my neck by the idiot who allowed to do that to me.
Also I asked him about my slight bump on the rear of my head and he checked it and said its no big deal, just a small cyst and not to worry about that.
Ofcourse I went to do MRI of the head and neck which clearly showed three herniated upper discs in my neck.
So at this point its hard to say if my current neck crackling sounds (which have improved but not fully) as I turn my head and my neck pains are from the herniated discs or Lyme, which we both agreed on.
I did inform him that my current chiropractor has helped me a great deal to loosen up my neck and to relieve alot of the pressure on the upper back, on my head, also had some Accupuncture sessions prior to chiro (though were costly but seemed to help).
We also spoke about the horrible politics of Lyme and he also disagrees how all doctors and treatment guidelines are unfortunately unproperly being governed for very short periods of times.
I did ask him about and he is aware of doctor Burascanno and his guidelines to treat this Lyme disease, but the doc says that insurance would not cover or allow him to do such treatments and for long periods of time as well, and that each patient differs one from another.
He did say that I had a choice of either IV treatments and Oral meds, since I am not a fan of IV neeldes and frequent long drive doctor visits, he then prescribed me the Orals.
The Meds prescribed are Ceftin 500mg to be taken twice a day (60 tabs), and gave me some headache medicine for my headached and neck pains (Fioricet).
I did inform him that I did not want to screw up my liver or intestines with the meds so what else should I take, and he advised me of Acidophilus and Milk Thistle tablets.
So I got 50 capsules of Milk Thistle 200mg and 60 tablets Acidophilus 500 million CFU formula.
Also he prescribed me Xanax (which I had asked for)to help with the sleepless nights.
He wants to see me in two weeks again as then I hope he will then draw my blood and check for any changes.
The Major things we Did Not speak of were Coinfections, a Diet Change for Me, though I did tell him I was now taking various Vitamins and drinking lots of Juices, no more soda and coffee.
Oh and I did tell him that I Smoke and occasionally drink Alcohol, I was never told to stop Either of those.
And the other topic we did not speak of were the EBV and the HPS which I was tested positive on both tests. (perhaps we both forgot to talk about these)
So I guess the whole visit with the doc took about an hour or so and I guess it went well and as I had expected though I felt he would do more tests instead of all the talking we did.
On his buis card he writes that hes a Scientific Advisor to the Lyme Disease Foundation.
I guess thats about it as I recall,
Any Advice, Suggestions and Input would greatly be appreciated.
How to take the meds and how to take the Milk Thistle with Acidophilus pills, before the Ceftin or after, the timing, and the duration.
What should I talk to him next time about and what I should ask and expect.
Hope this info is of great help to many new patients, current patients, and those who dont know and are seeking help with Lyme disease and their first office visit with a doctor for Lyme.
Thanks for reading my story and your advice...
Best Regards, Eric
[ 24. December 2008, 07:30 AM: Message edited by: eric555 ]
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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The lab testing for Lyme isn't very accurate so it's possible the doctor is working with the labs you gave him and his own clinical observations.
Since coinfections weren't brought up, why don't you ask at your next appointment? Then you'll know whether the doctor treats coinfections and if he does what his opinion is of the possibility of your having one. The testing for coinfections is bad too so that'll probably be based on symptoms and signs also.
Posts: 984 | From San Diego | Registered: Nov 2006
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bettyg
Unregistered
posted
eric,
nicely done post; legible for me!! informative plus.
your dr. should have stated when to take meds and milk thistle/bioptics.
eric, write down the things you wish to discuss w/llmd having MOST IMPORTANT THINGS AT TOP; not bottom of list in case you run out of time.
i always type this up and give to each of my drs. and ask that they file that IN my medical records, and can be used when they dictate their notes for more accuracy!
looks like you had a nice thorough exam. good!
IP: Logged |
posted
Hey, eric... aside from what I told you in PM, all is good!
What brand of acidophilus?
I would definitely cut down on or cut OUT the juices. YOu will end up with yeast for sure if you don't already have it.
Read labels for sugar content. You can only tolerate about 30g of sugar a DAY [spread out]....IF THAT. And that includes any fruit you manage to sneak in.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
The lymenet rules are not to use city names to identify docs. Could you please edit your post?
It is not a good idea to give such complete information on a public forum about your treatment and diagnosis, especially when it is clear who the doc is.
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by lou: The lymenet rules are not to use city names to identify docs. Could you please edit your post?
It is not a good idea to give such complete information on a public forum about your treatment and diagnosis, especially when it is clear who the doc is.
OK understood and done, I removed the actual name of the clinic !!!
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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posted
hmmmm juices and fruit, i always thought that it was good to intake those....
ofcourse i am still very new at all this and learning day by day and night by night.
???
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hey Eric,
For what it's worth, I have no idea who your doc is.....but I read your post after you had edited it.
As for the juices, TuTu is right sugar is bad, and juices are usually pretty high in them. Exceptions may be Cranberry, Pommegranite. Also, I drink juice but only put about 1/4 of juice in a glass and fill the rest with water...diluted has worked well with me.
As for the milk thistle that is good liver support but NAC may be better or both if you really want protection.
Probiotics are very important. Take your milk thistle and probiotics 2-3 hours away from your antibiotics.
All in all it looks like you are on the right path. Next appt. discuss w/ your doc your positive EBV and other virus issues as well as co-infections.
Hope that this helps, Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Thank you for the input & the replies so far...
Do I take the Milk Thisle and Acidophilus before or after the Ceftine meds ?
Also can I take both Milk Thistle and Acidophilus Together or Apart ?
And same questions for a Kefir Pro Biotic drink, before or after ? or all taken at different times and when ?
Also do I take any of these these with or without foods ?
And Ceftine with or without food ?
Thank You.
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
A good assessment of your visit to see the doctor.
Looking at the overall issue with your neck and the herniated disks. I think you might want to consider using an LED. I know they are expensive, depending on your resources you could investigate the use of lightworks on the disks. You might want to mention this to your doctor. The LED might be able to help correct some of the damage done.
Using an LED in this manner has a lot of clinical testing done by the University of Wisconsin. And there is a lot of information about LED supporting the developement of new fibroblasts in bone. I know the crinkling sound in my neck has vastly improved in my situation.
If you can afford it get the photoenertics LED. It is far more powerful then lightworks and despite the 1149 dollar price tag. I believe it is well worth it even though I haven't tried it.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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Please read this. I have lost several doctors to the persecution of lyme docs and had inadequate treatment from others who were afraid. So I take it personally when people put lyme docs in jeopardy by posting too much information on a public forum. And when trolls gather information that you have posted on the forum, and use it against your doc, you may be in the same boat.
Other people who read this post could help by reminding newbies. I am tired of being a crank but this needs to be done, apparently forever, as newbies keep showing up.
Posts: 8430 | From Not available | Registered: Oct 2000
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Eric,
First a warning about Fioricet. It is only to be taken occasionally. Do not take it more than once in a day, and do not take it every day. If you do, you could get rebound headaches from it. They are bad.
Take your acidophilus with each meal. Be sure it is at least 2 hours away from the antibiotic (Ceftin). It's not a question of before or after. It is a question of timing.
Take the kefir at least 2 hours away from the antibiotic. You can take the acidophilus and kefir together if you want to.
Not sure about the milk thistle, but again, take it at least 2 hours away from the antibiotics.
Antibiotics kill probiotics (kefir, acidophilus), vitamins, supplements and herbs. So, this is the principle that you must remember. Otherwise, you are just wasting your kefir, acidophilus, vitamins, supplements and herbs.
Regarding the ceftin, read the instructions to see if you can take with food. My drug book says to take it with food. So, take with a snack.
Posts: 9931 | From Maryland | Registered: Dec 2007
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Hi Eric! I tried to respond to your PM, but your box is full. It looks like your questions have been nicely answered in the above posts, though.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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quote:Originally posted by lou4656: Hi Eric! I tried to respond to your PM, but your box is full. It looks like your questions have been nicely answered in the above posts, though.
Cleared my PM Message Box, Thank you
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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posted
Hi Eric, Overall not a bad visit by the sounds of it.
Sure do wish he would have gotten into coinfections, but I know you will ask him about that next time.
Glad to hear it's only 2 weeks until he sees you again.
Really surprised he didn't say stop smoking and drinking.....hmmm......
If you are going to be on orals for a bit, he should be having your blood tested for several things on a monthly basis.....especially to make sure your liver is o.k.
Keep us updated!!!!
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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I agree you are off to good start. Couple of nuggets that supports many of the comments here. I was bit in 2006 and after 10 tests i never had one band and that included spinal tap. After 2 months of abx i now have 5 bands.
Second....from my viewpoint the diet and supplements help. Your onset sounds very similiar to mine. so maybe my approach will work as well for you.
From a diet perspective i basiclaly follow weight watcher although i am not heavy at all...that made it easier for me to follow Burrascano's guidelines.
I cannot stress this enough. IMHO Burrascano's protocal does work but you will need to quit or cut down on smoking. being on weigth wathcers before my dx'd made it easier. My doctor who is ILADS knows Burrascano and she thinks his regime is very rigid..she said everything in moderation...
She told me that 3 months in so i had 3 months with almost Zero sugar....and i'm a junk food eater!! i really felt it helped speed things up. Can't prove it of course....but for sure you know sugar will agitate your anxiety.
Just my two cents..
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Sounds like a conservative plan.
I'm not familiar with taking Milk Thistle but you can do a search here on Lymenet and get a wealth of info.
My first diet was low carb and no sugar, which I followed religiously for a year or so.
Also like others I took milk and acidophilous products about a couple hours either before and after orals.
I received some treatment for my coinfections.
Malarone for Babesia and Levaquin/Septra for Bart.
Nothing for the EBV or Mycoplasma unless it was treated during my 3 1/2 years of treatment for Lyme and co.
Best of luck to you Eric on your continuing treatment.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6138 | From Columbus, GA | Registered: Jul 2004
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posted
Question re how many types of probiotics we should take? I take more than just acidolphilus - I also take bifidus and lactobacillus via Natren's Healthy Trinity.
Posts: 13116 | From San Francisco | Registered: May 2006
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