HealingWell
Search Close Search
☰

LLMD in NJ

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/15/2015 5:58 PM (GMT 0)
Hi Everyone,
I have been treating with a very well known LLMD in northern NJ and getting to the point that Im not sure of the game plan- paying thousands of dollars out of pocket and not making progress. Im giving her until September (as we await yet another test result). If nothing changes in two months, I need to move on - its been over a year and I feel like its been very trial and error on her part. I have severe neuro symptoms and have never had an IV, a picc, etc. Feel like she's not being aggressive while I deteriorate daily.

Can someone recommend a good trusted LLMD in the garden state? Thanks!
L
Posted 7/15/2015 6:16 PM (GMT 0)
Sorry to hear that you're not progressing with your treatment...
Sometimes a change in Docs can make a big difference.

So, do you feel you are actually getting worse since you've been treating for the last year?
Posted 7/15/2015 6:20 PM (GMT 0)
You can send me an email and I'll be happy to share the listings that I have with you. Just tell me what city and state you are in (I don't guess well, LOL!) in your email!!

I have not had any personal experience with any of the LLMD's on my list, I have just been compiling this list on my own over the years to help those on this forum.
Posted 7/15/2015 7:56 PM (GMT 0)
I feel like we have stagnated. I was on abx from June-Dec and actually improved. Then, got hit hard with flu, bronchitis and teeth issue so was on massive doses of non-Lyme antibotics so we decided to stop the Lyme antibiotics. I also have reactivated EBV. So we decided to hit the EBV hard with a very toxic drug - Valcyte. No abx. While on the Valcyte, I started developing these horrible symptoms which are still with me 6 weeks later after stopping I started begging her to go back on abx and she won't until we take bart test next month. Apparently I test positive by Igenex FISH test for RNA of Bart but she wants me to take a test that will determine past or present infection.

Meanwhile, the neuro symptoms are piling up. Burning throat, cranial issues, a nerve impingement feeling on my whole right side of body, etc., sleep apnea type episodes. I am crying 24/7. I feel like I should be hospitalized but we all know there's no love for us there:))
Posted 7/15/2015 8:24 PM (GMT 0)
Wow, I'm so sorry! I'd likely be looking for a new doc under those circumstances as well - right or wrong!!

Did you know that EBV can often be brought back into submission (LOL!) with high doses of L-lysine? That's all I use now. Just thought I'd ask. I've been treated for reactivated EBV (again! eyes) recently and I'm now to the point where I am slowly reducing my dosage and seeing if I can eventually stop soon.
Posted 7/15/2015 10:41 PM (GMT 0)
Yes, I did know that but thanks for reminding me. I have been hitting the alpha lipoic acid, fish oil and magnesium hard for the neuro symptoms that I have sort of forgotten about the benefits of lysine. Will add it back into the regimen!
Posted 7/15/2015 10:42 PM (GMT 0)
I'm pretty sure I know the LLMD you're talking about. It's one of two for sure ;) I'm working with an excellent LLMD in NYC that I can give you information on just email me. He's top notch and works with not only lyme patients but others with unknown illnesses. People swear by him including me so it would be worth maybe working with somebody else.
✚ New Topic ✚ Reply