Time to Go See Dr. J?

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NicHostetler
Veteran Member


Date Joined Mar 2017
Total Posts : 647
   Posted 1/9/2018 10:30 AM (GMT -6)   
I am so sick and tired of being sick. I know all of you can relate. I given myself a year of treatment with my LLMD and not much progress has been made. Today I feel absolutely terrible.

I think that it might be time to stop wasting my time and go to see Dr. J in DC.

Reason why I think this:
Not much improvement since starting treatment a year ago
My LLMD doesn't pulse and only really looks at treating Lyme
Doesn't have a whole lot of knowledge on Coinfections
Doesn't look into heavy metal/mold issues or parasite issues
Only runs liver tests once every three months which is when I see her

The issue with Dr. J is that its pretty expensive. I can fly there for free with my miles that I have, but the appointment will cost me $890 and then follow up is $490 and who knows how many followups I will need.. Plus does anyone know what testing they run and about the costs of all that?

Has anyone had real success with Dr. J? Or seen anyone that has?
Very sick starting around 07/2016
Started treatment 03/2017
Bixain & Cefdinir - 3 months - plateaued
Then Biaxin & Minocycline - 3 months - did not improve
Tinidazole - 500MG 2x a day - 2 weeks
Now taking:
Mepron 5mL 2x a day
Zithromax
Nystatin
Cats Claw - 30 drops 2x a day
Gou Teng - 30 drops 2x a day
CSA - 40 drops 2x a day
Japanese Knotweed - 40 drops 2x a day

joee
Regular Member


Date Joined Dec 2011
Total Posts : 180
   Posted 1/9/2018 11:58 AM (GMT -6)   
Nic,

I see KL at the Jemsek clinic and was with another llmd for a year prior to that.

At my former llmd, I was only being treated with the same meds over and over again never changing it up and never a break. I was not getting better I was getting worse in the year I was with that dr.

Then I went to Jemsek clinic. Wow. Each protocol is different. Different meds tackling things. I beat babesia with jemsek and now fighting bartonella which I did not realize was a huge bacteria load for me until I started this round of treatment. It is hell but I have made improvements in so many other ways that I keep telling myself that it takes time and I will beat these symptoms down too. I really feel they know what that are doing. My last dr understood that there are coinfections but treated everything with the same 3 meds given the same way.

I also was afraid of the cost. But I spent 2000 dollars to visit this other dr for the 1st visit and then 185 each month after that. We also spent 2000 dollars on testing with this dr.

When I went to Jemsek clinic there was the up front cost for the 1st visit,but I did not have to re do the igenex test which saved money. I did have a ton of labs to be done, but I have very good insurance which paid for those labs and all my meds have been covered by my insurance, so I am lucky in that aspect. The 1st llmd never drew labs, I asked my primary to do labs when I started to feel so awful and I was getting scared. With Jemsek clinic I get labs done on every second week of my protocol and don't need to involve my primary dr anymore with requests of labs and checkups.

I actually think i have saved money with this clinic. I am not sure if were are allowed to share costs, so I will not do that but I will tell you that over the course of the year I actually saved $270 dollars in office visits because I don't go every month.


Of those visits not all of them were in office. Some of them were over the phone, reducing my travel time and cost to the clinic. First two visits were in office. The second two were over the phone and the last two were in office. The next up coming visit will be at the end of april and it will be over the phone.

I understand you have to fly to the clinic and that is a huge cost as is the hotel. I live 2 hours by car so we drive and the last two in office visits we did spend the night prior because my appts were very early in the am and traffic into DC can be very bad and I did not want to be late and miss the appt.

All I can say is that I am so very glad that I did switch. It was not something I was actively planning to do, it happened because I was getting so much sicker and my dr thought I needed to do IV therapy which he did not do with his practice, so he referred me to Jemsek.

So very glad it happened to work out that way.

I still have a huge way to go, but I can say that prior to going here I lived in so much pain in my abdomen, in addition to other awful symptoms that I don't need to go into because, hey, we all have the same horrid stories to tell. But my point is the pain in the abdomen was so bad, like 10, I lived this way for 8 years. Clutching my stomach all day, crying all day, and going about my life just mystified that I could have that kind of pain, yet no one could find a cause. Well, I have not had pain like that in the last year. Not once. Not since going to the jemsek clinic. The first visit was to do an exam. He didn't start me on treatment right away, he just put me on a maintenance program to help me get stable and strong enough to do the protocol. 6 weeks later I was good to start.

It has not been easy, I will not lie to you. I am still struggling with so many symptoms, but so many have resolved that I am hopeful.

I told KL (the pa there) that I used to live in so much fear of this disease and the treatment, but I can finally allow myself to trust the process and I trust her because so far she has not let me down. She says it like it is, tells me what to expect and I find that she is right on the mark.

As far as the coinfections. I personally feel that the co infections are the biggest threat and should not be ignored. Jemsek goes after all of them, even if you test negative. Glad they do, cause I tested negative for bart, but guess what?? I got slammed treating bart this go around, and they tell me my bart bacterial load is huge. I look back over the years and see most of my symptoms are in fact bart related. So here we go....I beat the rest and I'll get bart too with their guidance.

So if you knew me, and you asked me, I would tell you, run , don't walk to jemsek!!

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1664
   Posted 1/9/2018 12:07 PM (GMT -6)   
Looks like a good progression Protocol to me. Only thing I would recommend is to continue with Tini but on a two days a week pulse schedule.

How long have you been on the Mepron/Zith ? Might want to either double the dose, and/or add in artemisinin (must pulse).

After 4 or 5 months you then should go after Bart with a Rifampin/Zith/Mino (or similar) protocol.

I'm also doing blood work every 3 to 4 months, except for when I was on IV Rocephin the it was every other week and LLMD visits were one a month.

I can understand your frustration... but 9 months is not that long for treating Lyme, Babs, and Bart, and who knows what else.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33927
   Posted 1/9/2018 2:08 PM (GMT -6)   
"The issue with Dr. J is that its pretty expensive. I can fly there for free with my miles that I have, but the appointment will cost me $890 and then follow up is $490 and who knows how many followups I will need.. Plus does anyone know what testing they run and about the costs of all that?"



I wish now that I had gone to see Dr. J over a year ago. I'm now making plans.

Joee covered what I have found - the appts will be cheaper since you don't have them every month PLUS you can do a phone appt a couple times a year.
So, I will most likely only need to travel twice a year to see him.

I am not saying other LLMD's aren't worth seeing...I'm just commenting on the cost...if that's all that is holding you back.

But, I wanted to mention that I don't know if Dr. J often looks at heavy metals and/or mold (unless there is an obvious mold exposure) - as I don't see it mentioned.

But, as was already mentioned he will automatically treat the three B's.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

NicHostetler
Veteran Member


Date Joined Mar 2017
Total Posts : 647
   Posted 1/10/2018 8:26 AM (GMT -6)   
tickbite666 said...
Looks like a good progression Protocol to me. Only thing I would recommend is to continue with Tini but on a two days a week pulse schedule.

How long have you been on the Mepron/Zith ? Might want to either double the dose, and/or add in artemisinin (must pulse).

After 4 or 5 months you then should go after Bart with a Rifampin/Zith/Mino (or similar) protocol.

I'm also doing blood work every 3 to 4 months, except for when I was on IV Rocephin the it was every other week and LLMD visits were one a month.

I can understand your frustration... but 9 months is not that long for treating Lyme, Babs, and Bart, and who knows what else.


Thank you so much for you input. Maybe I will stick it out another 6 months or so with this doctor then..

With artemisinin, how do you pulse it? I took a couple rounds of it doing 2-3 pills a day for three days then taking 11 days off.

tickbite666
Veteran Member


Date Joined Mar 2014
Total Posts : 1664
   Posted 1/10/2018 8:40 AM (GMT -6)   
I have never taken it, but your pulsing schedule sounds about right. Maybe others will chime in. I've heard of several different schedules but can't recall specifics.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2040
   Posted 1/10/2018 9:44 AM (GMT -6)   
joee said...


I still have a huge way to go, but I can say that prior to going here I lived in so much pain in my abdomen, in addition to other awful symptoms that I don't need to go into because, hey, we all have the same horrid stories to tell. But my point is the pain in the abdomen was so bad, like 10, I lived this way for 8 years. Clutching my stomach all day, crying all day, and going about my life just mystified that I could have that kind of pain, yet no one could find a cause. Well, I have not had pain like that in the last year. Not once. Not since going to the jemsek clinic. The first visit was to do an exam. He didn't start me on treatment right away, he just put me on a maintenance program to help me get stable and strong enough to do the protocol. 6 weeks later I was good to start.


joee,

If you don't mind my asking, what was causing the pain in your abdomen and why did it go away after going to the Jemsek clinic?
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