Topic: My father may get me to Famous Dr. J, in D.C. I need to know what makes him the Best
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
I don't know if I could possibly still be Herxing 8 days off the Abx, but the 12 days I was on the 4 different abx at full doses seems to still be with me.
I am still aching which is not a baseline symptom for me, but only a herxing symptom.
Stiff neck is present and not a baseline symptom.
Everything else remains flared and the crying stuff comes and goes, but is generally not a baseline symptom for me.
Believe it or not, my current doc. takes my Medicare, spends 2 hours with me on appts. and is very smart. I've been told Dr. J in D.C. is best to see with cases like mine and I really feel that this is where I am now as I can't take anymore of this torture.
I need to know what Dr. J does different then the rest of the LLMD's or the like so my father doesn't feel like he is wasting his money. Thats the big issue of course. For me, I'm desperate to get well and the money wouldn't be an issue if I had it and it was coming from my own pocket.
Thanks in advance,
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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I was going to suggest him after seeing your recent frustrated posts and seeing your address!
Will be interesting to see if you get any detailed replies posted. He does not treat ala Burrascano's guidelines, and as a result his treatment protocols have garnered quite a bit of criticism on here from those who seem to think they have a medical degree.
I cannot say he's THE BEST, but he's definitely up there and is the best I've seen by a LONG shot.
I will PM you!
Posts: 408 | From California | Registered: Apr 2008
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seekhelp
Frequent Contributor (5K+ posts)
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posted
I thought Dr. J was even more aggressive than the legendary Dr. B when it comes to IV and stuff? From what I've read, you either love or hate him. The woman in UOS sure loved him!! Good luck Gary.
By the way, I think WildCondor endorses him. That must mean he's the man!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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lymednva
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posted
Basically the man is brilliant! My LLMD's wife is his patient, so that right there tells you something!
Have you seen Under Our Skin? He treated Mandy in the film, the young blonde who was in such bad condition.
If I were looking for a LLMD in t his area, I would not hesitate to see him. I happen to like the one I already see, and he has picked up a few of his treatment protocols. It's not all IV, either.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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seekhelp
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posted
The other good thing is he's not one of these family docs turned LLMD. He actually has a ID doc background too!!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
He'd be great for you, Gary. He's very aggressive and uses IV treatment. You will need to keep close contact with him regarding the herxing as you will have a lot of it.
Dr. J takes the worst cases and treats them successfully. Tell your dad that. Go for it, I'm happy for you!!!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Pinelady
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posted
I would go for it. Good Luck.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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sparkle7
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posted
He sounds quite good in theory. Some people love him & others didn't like him at all. Usually, the negative comments say that he gives alot of attention in the beginning but then he doesn't see you much after the initial "honeymoon" phase.
Treatment with him seems long, arduous & expensive...
You may want to ask Metallic Blue about him. I think he keeps records on people's experience with the various Lyme doctors.
If you father checks the internet, he may find negative things about him from "quackwatch" agencies, etc. I'd be cautious about that just in case.
I would not believe the Quackbusters about anything since they have an agenda but if your father looks him up - he might be discouraged from wanting you to see Dr. J.
He was harassed in North Carolina & eventually moved 2 times to be in DC. I thought about going to see him but I don't know if I want to get into hard-core abx. I have mixed feelings about it.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
I believe he PULSES abx treatment which imo would be better for you.
Posts: 269 | From VA | Registered: Jun 2005
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I would also like some info on him. mostly cost of seeing him and iv fees or just a phone number so I can call and ask myself.
thanks, melissa
Posts: 3905 | From USA | Registered: May 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
You have said so many times how long you've struggled with health problems (like 15+ years). Why on Earth wouldn't you give real Abx treatment a crack after so much misery Sparkle7?
quote:Originally posted by sparkle7: He was harassed in North Carolina & eventually moved 2 times to be in DC. I thought about going to see him but I don't know if I want to get into hard-core abx. I have mixed feelings about it.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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-------------------- Contracted LD et al, August 2000 Officially dx, February 2006 My Lyme Neuroborreliosis mimics Multiple Sclerosis. Lesions- Brain, Cervical and Thoracic spine. Posts: 123 | From Seattle, WA | Registered: Oct 2008
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seekhelp
Frequent Contributor (5K+ posts)
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posted
What do you mean NeuroEcclectic? I mean nothing harmful. I'm just looking at all angles.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I'm sorry to butt in but why is this post in Medical?
i thought that anything to do with doctors: seeking, feedback belonged in Seeking a Dcotor or General and done with PM's?
hey LT, hope you can find some answers.
Posts: 255 | From - | Registered: Jun 2009
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Thanks for your input everyone. I called this a.m. and it's 3-4 mos. waiting list, which I got on.
seems like an eternity the way I'm going, but I have no choice.
It would appear pulsing is the way to go between now and then. I will discuss this with current MD. BTW, I put a call into current MD who has me on all of these supps and the Low Dose Naltrexone, which I have continued to take. I'm being told that I my immune system may actually be kicking in and fighting this stuff off as well and this could be contributing to my current problems.
Another variable to throw into the equation. Lots of grey area to sort through. I was also told that even though I stopped the abx now 9 days ago, it is not unreasonable that I am still feeling the die off effects as the meds stay in the system continuing to work for days after I stopped.
I know Mepron has a 2-3 day half life, so that would make alot of sense with that particular drug. The rest are much much shorter.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
Actually in my son's treatment, the number of visits increased as time went on, as it was needed. There was no loss of interest. The 'pulses' I think made the whole ordeal much more manageable than other protocols...
Posts: 6 | From Athens GA/Patzcuaro MX | Registered: Oct 2009
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quote:Originally posted by pugs: I'm sorry to butt in but why is this post in Medical?
i thought that anything to do with doctors: seeking, feedback belonged in Seeking a Dcotor or General and done with PM's?
hey LT, hope you can find some answers.
Because I'm not moving threads to proper forums until I quit getting harassed for doing so. Please check the thread in this forum about this topic and post there. I think it's important for the vocal few to see that the vast majority would like to see posts in the proper place.
Gary, so glad to hear you got on the waiting list. Detox while you wait!!! It may take a LOT longer than two weeks for the toxins due to the die off from the meds to exit your system.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
seekhelp - I've been on abx & they just made the parts of me that do still function ill... ie: my intestinal tract. I became very ill from the drugs - worse than I was from having Lyme. I tried various combinations for about 9 months.
I see people here post repeatedly about getting relapses after stopping abx & the side effects. It just seems that they don't always work. You have to mess around with them & try a number of different combinations until you get it right.
Honestly - I don't have the money for it. I already spent my life savings on doctors. (I did actually have a life & worked for over 25 years before becoming ill.) Unless I knew that I had a really good chance of getting well by taking them - I'd rather avoid them.
I never see any info on percentages of how people do on the various treatments. 2 people here that I know of (& was in contact with) were cured by alternative means - no abx. I think it can be done.
We just don't know & I don't want to keep taking them for years & years. I'd rather take my chances with herbs - even if it takes longer.
Just my personal opinion since you asked. I don't mean to divert this thread. I wish anyone the best who want to try intensive abx treatments. I have nothing against it. We all have to find our own way.
Fine with me to leave this thread on "medical". It does offer some medical info.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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As I have said before -- you seem to go from one extreme to the other. You tried IV Rocephin and stopped after a few days. Now you have tried a 4 drug oral combo and have stopped after a couple of weeks. And next you want to go to one of the most aggressive LLMD's who is known to prescribe multiple IV meds at a time.
I think you need to decide on a strategy and stick with it.
Since you don't seem open to herbs you are left with only a couple of choices -- go slow and take only meds you can tolerate and ramp up over time or get IV's which are extremely expensive and will likely make you sicker than you have ever been.
Of course this is just my opinion -- but I feel that with the level of brain inflammation you have low and slow makes more sense.
This is not medical advice, just my opinion based on hubby's experiences.
Good luck with whatever choice you make.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Bea, I totally agree low and slow. What you don't understand is that I am trying to get well at all costs.
When you say I go from one extreme to another, I'm not sure how to take that.
What I was told is that Dr. J can help the worst cases, which is what I feel I have. I wanted to see if others agreed and thats why I started this thread. My father thinks that all LLMD's are about money. He is still not convinced that I have Lyme despite the fact that I have every symptom, tested pos. for Babesia, have 2 pos. Igenix bands. He wants proof before he lays out $750 for a Dr. visit. Again, if I had the money, I wouldn't think twice, as I know what I have.
I am caught up in the Lyme debate and it extends to my immediate family. My father struggled with Anxiety and Depression when he was younger. He faired well with Zoloft to this day and for whatever reason tries to correlate my symptoms with what he went through. The only problem is he didn't have Neurological problems. He didn't take Antibiotics and Herx, He didn't do coffee enemas and get relief.
With regards to what I am trying to come out of, my current Dr. didn't tell me I was going to get into this mess starting all 4 abx at once and ramping up so quickly. He did tell me I have this poor detox gene. Maybe I should have went slower, but I followed his directions, and now I am the one paying.
If I listened to the advice of everyone on here I'd be doing 100 different things. Thats why we all listen to each other, but certainly this disease is so complex that what works for one doesn't always work for the other.
I do appreciate your feedback, but I would appreciate it if you would be a little more understanding that I'm always trying to do the right thing. I'm having another bad day so forgive me if I'm not saying this right.
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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WildCondor
Unregistered
posted
I have taken a few patients in to see him and he knows what he is doing for sure. Lately though, he has been treating using only pulse therapy, even for babesia, which I find somewhat puzzling. I know he is going through a lot personally, so that might have something to do with it. He has a good reputation, he is a good, kind man as well. I was never his patient though, I have only been with other patients during office visits to help them. My advice would be to talk to other patients who have seen him recently, and see how some of those patients are doing now after 1-2 years. Make sure they are making progress. Some folks are getting frustrated with the pulse therapy, and feeling that it is not strong enough. Ask questions to those who know firsthand.
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WildCondor
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posted
Indeed why is this in medical ?
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dmc
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posted
Gary, Do you think the IVIG backfired and hyped up your responses since?
I guess my meaning is,, did it put your system into overdrive and it's difficult for it to settle to a more bearable?
Your herxs, reactions to things are now heightened or was it that way prior?
Posts: 2675 | From ct, usa | Registered: Jan 2004
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I know you've related to my situation and the condition of my body, so I felt like I wanted to post. I can sense your desperation and can definitely empathize.
In this condition, antibiotics only make me deathly ill (or deathly sicker, I should say) and send me straight to the ER. So, I've decided that right now I'm going to put off my appointments with my well known LLMD and work with an alternative practitioner to get my body detoxed and stronger. I chose a practitioner who practices ART or muscle testing, so we weren't stabbing in the dark trying to figure out what my body needs in order to begin removing toxins. It's going well. I think in a couple of months, maybe 6 at the most, I'll be able to try an antibiotic protocol with the well known LLMD, if I choose to.
I'm telling you this because I think Six is right, you could use this time between now and your appointment to your advantage, and you can prepare your body for what it's in store for. I think this would perhaps involve going further than just coffee enemas and epsom salt baths. Maybe you could get an ND or chiropractor or hollistic practitioner on board, to monitor you and guide you over the next few months? I hate to see someone as sick of yourself experiment, especially in such a delicate state.
I usually don't post this much about what I'm doing, but I just sense your fear and I wanted to let you know that I've been there..and often still do go there at times. It's going to be okay though Gary. There are people and things out there that can help you. Just be careful, and please take care of yourself.
P.S. I don't usually get involved with silly politics either, but come on...seriously...cut each other some slack. We're all sick. I'm pretty sure most of us have bigger fish to fry than where our posts technically belong. Most of us don't feel well enough to care. Let's just focus on helping each other. I think that's why we're all here in the first place.
[ 03-08-2010, 08:53 PM: Message edited by: LittleLymie19 ]
Posts: 710 | From West Coast | Registered: May 2008
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posted
Just my opinion...I really do not want to step on ANYONES toes...
but lately I've seen post of people saying---dont post "here" dont post "there" ...why is this here....why isnt it there???
I think we are ALL just trying to do the best we can...
It seems like sometimes the post might start as medical then get off the trail per say...but I still find them interesting and informative (which is why were all here--right)?
If a thread gets off topic some and you don't like it then just quit reading it..thats what I do.
PLEASE everyone, lets try to get along...there is enough distension from outside the "lyme community" we dont need it from within...whether we like it or not we are ALL a "member" of this wonderful group of elite "lymies" ): ....kinda one big family.
And, I to feel the moderators do a great job...they take the time to deal with all this crap.
Like, I said...I dont want to offend anyone...just my oponion (:
Peace,
Karen
P.S. Good luck Gary
Posts: 423 | From Virginia | Registered: Nov 2009
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posted
I have seen Dr. J. for the last two years. I feel like the man restored my health. He is agressive with his oral protocols, and will recommend IV treatment if he feels it is necessary. I had IV treatment from IDSA doctors before coming to him, and I have only had to do oral pulses.
I had no hope that I'd get well, or at least as well as I currently am. Between his medical guidance and my wonderful Lyme-literate PCP, I am almost entirely in remission. He is well worth seeing. Highly recommended!
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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posted
I think Dr. J is a smart man. I think he knows what he is doing medically. He has taken a big financial loss due to legal bills. Before you go to him. You should know that he charges $750 up front. He will spend 2 hours with you. You will not receive your treatmetn plan until the next visit which is $375. If you go on iv antibiotics it is $2,000 a month which includeds the first months visit and antibiotics. The following months are $2,000 plus the cost of meds. I heard that people do well after a very difficult iv program. I have talked to several who are functioning after being very sick. Good luck Gary.
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When I was first diagnosed and needing IV, it was to be $2,000 a week - anywhere - just the cost of the medicine. Beyond my means, of course.
So, it is now just 25% of that cost. While 2K a month is a lot it is sure better than the 2K per week of the late 90's.
It's also good news that IV may not necessary be needed in all cases. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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djf2005
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Member # 11449
posted
Well, some of you are not going to like this, but I am going to say it anyway.
Keep in mind I have not seen him personally, but I have spoken to quite a few people who have.
The reports are as such:
Dr J unfortunately does not do much except pull out the big guns and Rx multiple different IVs.
In depth detox, metal removal, and multiple other issues are not usually addressed, as he requires the patient to bring someone else on.
This requires more time and money w/ another Dr, and personally would frustrate me.
I think there are those that are helped solely by using abx and taking their milk thistle, and then there are those of us (whether we realize it or not) that will have to take much more complicated steps in order to regain health.
I am not saying he is not a kind, caring Dr who knows who to Rx abx, but beyond that, I am unsure.
Rxing the proper abx combos is not rocket science, it can be learned quite easily by reading Dr B's guidelines or just browsing the internet.
Lyme is not just lyme, or even close. There is a myriad of things responsible for the disarray in the body, and w/o them all being addressed remission is not likely IMO.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
My son had been suffering with lyme for 2+ years before we finally found our way to Dr. J....
He had many issues, the worst being he was losing his vision.
Dr. J was very thorough in his exam and actually also diagnosed him with a hydrocele in his groin/teste, something that two "specialists" at a well known childrens hospital in Boston missed since we began questioning abnormalities in his testes since he was 3!
My lil' one not only began treatment for lyme, but also underwent a much needed surgery for a hydrocele/hernia repair that ended up being quite large.
My son has been under his care for 1 year now, going next Monday for another appt. (On average has had appts every 3 months).
My now 7 year old has regained his vision, can walk without pain and no longer throws up everyday. He's thriving with Dr. J's treatment (oral meds).
....Dr J saved my son.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
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posted
Hi I also was seen by Dr. J...very smart and caring. I had a similar experience to djf2005 (above)..it was very much the nuclear option all the way, multiple IV drugs and coninfections, this did help to get me on the path to wellness after afew big herxes, but I also needed diet, exercise and vit advice which is not a big focus there. I was also a patient during the moving of the offices.
Prices are about the same as all the other LLMD, my accountant likes the recp't for my taxes.
Posts: 23 | From northeast | Registered: Sep 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Gary,
If your father is going to help here, be sure he saves receipts for his taxes. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My LLMD is a colleague of Burrascano. I asked him about that protocol. He said that much of it was good advice, but he felt it to be a bit agressive.
So he started out slowly with me. When oral abx did not work, we started the Bicillin shots. If they don't work (and they do, thank goodness) then and only then would he consider using IV antibiotics.
When I was herxing too much, we skipped a week. He said I am not to be a hero....just keep going and slowly get results.
The money we spend on him is worth every cent. When I think about all the years and all the money we spent on doctors and treatments that failed, he is a bargain! I think the good LLMD's are expensive and are more than worth it.
I found out accidentally that abx work. Septicemia caused me to be on IV's in hospital for 6 weeks. Not only did they save my life from the deadly staph infection, they mysteriously cured the illness that had been plaguing me for over 12 years.
Only recently did I learn that I had lyme disease (et al). I strongly support the use of antibiotics. If you need them, you need them. Even the wonderful acupunturist I saw in San Francisco said "You very sick. Too sick. You need antibiotics."
There are few modalities I have not tried over the past 20 years. I am so very thankful that at long last I seem to be heading to freedom from my bed.
So listen to the advice you hear from your friends here, Gary. There is a light at the end of the tunnel. Sometimes it just takes a while to find it. But you will!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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Go for it, I'm happy for you!!!
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