NY NJ area specialists

Hello, can anyone give me first hand info on specialists? I am in NJ but fear there are no good specialists in this state.

I am willing to travel to ct, ny, pa... And if it comes to it md.

Dr H's office referred me to Dr R in nyc and Dr S in the Albany area... Anyone have any personal experience?

I can not trust a llmd list without personal references since my prior specialist is on that list and has not helped me - going on year 7 and I can not take another hopeless year.

I easily pulled up info online for a Dr C in ny and Dr P in ct... Anyone have personal input there?

Thank you so much in advance.

I updated my profile for email in case anyone needed to email reply. Thank you!

Hi dp wilco, thank you for your reply. I am going into this assuming any sought after specialist who can actually help is going to have at least a years wait.

I have been sick for 7 years, so my attitude is if it comes to it and I have to wait a year for the Proper help, well, I just have to!

Obviously I hope to find a dr who is good and may not have that long of a wait.

I am currently being treated by my family dr who is knowledgeable, she says she is following dr H protocol... So for now at least I'm on something!

But I do feel I need more then what was prescribed which is some homeopathic stuff and minocycline 50mg twice a day for the next month.

Hi girlie! I have no clue if the dosage is to increase in a month, my dr is one of those "I'll give you 30seconds of my time" docs...

I was going to call and question it, but I have read in other posts regarding minocycline that some folks were on 50mg twice a day so I thought maybe the protocol is that dosage for the first month to ease into it?

But I will call tomorrow now and hopefully she can find the time to double check the dosing.

I really want to find a specialist in the meantime and then have them assess what I'm taking... But so far no solid leads on that front.

I haven't been able to find online what dr H's protocol even is.

My dr also has me on some homeopathic stuff, and I'm taking supplements that I personally feel over all help might with everything.

I knew my ebv was still active, and I suspected a co infection, I've felt horrid for years, but was crushed that the Lyme was positive... I really had hoped that was snuffed out the first time...

My dr said the Lyme could be a new infection, or my old cells regrouped... She said the igenx test stated I was Lyme active within the past 6 months, but no where on the lab work did I read any notation of that, nor knew that could be assertained...

I even called the lab and they were confused by that as well!

Again this is coming from my regular dr who is somewhat Lyme educated, I went to her to get the test done since my specialist has been pretty useless.


And it's unclear if the co infection is a cross reaction reading... Like, it could be anaplasmosis which I've had, instead of the rickettsia the test came back positive with.

I went through paper work today to retrace my time line, and couldn't believe how long it's been going on for, and so upset at seeing all the paid for slips to my specialist, and how each time I was dismissed even though I was in tears telling her how I felt, because my lab work (which wasn't from igenx because she said it wasn't worth using them) had come back negative... Even though I had been positive in the past... And that the results that were showing up were just memory cells... And that the ebv will just go away one day


I'm just very confused, and it's hard to sort through this with how I have been feeling, and unfortunately, I have no support from family or friends so I'm very alone with this, thus why I came here to the message board realms.

Sorry for that wordy reply! I just feel like I have so much to vent about and no where to air it...

my cat, albeit a great listener, doesn't have much feed back other then some good cuddles.

Hi girlie! I was treated on and off for two years for bart, babesia and anaplasmosis... The babesia and anaplasmosis kept coming back .. Then the babesia results looked neg and it was the anaplasmosis that took a few more months to treat. During this time I had a lot of scary symptoms, and kept asking about what these diseases are doing to my body, if further tests should be done to evaluate damage, and my dr said no I'm fine in that area... <sigh>

Then lab work looked good, I felt good... At least for a month or so then I got Lyme with babesia, huge bullseye.. caught within a week and went on just doxy for a few weeks...

Months later felt not great, turned out the whole time my ebv was awakened... Meanwhile my Drs rules out tick diseases...

Then my ebv flare turned into mono and I was out of commission for 6 months...

During this time my specialist said I was fine sine my lab work looked ok regarding the tick diseases... Even though I had many symptoms... And I insisted something is causing the ebv and mono...

No treatment or further tests were done during this period, just told to rest...

As I slowly got strength back I still would go back to my specialist and dr complaining of up and down bouts of feeling like death... And my occasional lab work would look ok... No extensive tests were done...

Last year I had a test that came back pos for babesia but my specialist said they were just memory cells... And I started to think maybe there's something else wrong with me...

Then last week I got my results back from my last test through igenx and it come back pos for Lyme and rickettsia... Which could be the anaplasmosis again...

I don't know if the Lyme and co is a new infection or old...

Today calling around to specialists and surprised that some don't use igenx... I thought igenx is the better lab...

I'm also sickened at how much these specialists want... 2 I'm considering are 3 to 4 times the cost of my old specialist... And neither use igenx....

I'm just so confused and worried the longer I don't get stronger treatment the more likely the Lyme will root...

Yes girlie I agree. And there lies my frustration and why I have decided to look for a new specialist... Also when I was treated, it was nothing like everyone talks about, it was always one type of antibiotic... And that would stop as long as the tests read net, regardless of how I felt :(

I mentioned tests because that is what my specialist went by. I have been positive, and then the fact that when my tests read neg my specialist then deems me fine, even though I am still systematic. (Though I am positive again)

In calling some specialists today some want to use other labs, even though I told them I have a recent positive lab from igenx, a lab they don't use...

Another specialist, the recep told me they first need me to come in to test for auto immune diseases, before seeing me... The soonest I could see that dr is end of sept. I have no idea what these specialists protocols are or how much they rely on tests... Which is daunting.

Unfortunately I have had no feed back regarding Drs on my posts made to message boards.

1200 for an initial visit seems outrageously high, and the auto immune blood work would be an extra 350....

It seems a lot of specialist around here have raised their rates a lot.

How often do you get retested?

Looking at your medication list, wow... how do you feel now?