Looking for opinions on treatment plan

Hello, all! On the advice of the majority of people I've spoken to here, I went to my first LLMD consult appointment this afternoon. $400 later, I've gotten a treatment plan that I'm not really clear on or sure about. I'd love to get some opinions from others here.

First of all, he wants to test me for a MTHFR gene mutation. He thinks it's likely that I have this mutation based on my medical history and my family history. In any case, he requires this testing before he begins treatment. My insurance may cover the lab, but I've heard that I should pay out of pocket so it doesn't go on my medical record. I'm going to do some research on that before I go get the test done next week. If I do have the mutation, there is some kind of injectable treatment that I would use at home, which costs around $70/3 mos.

After the gene testing is out of the way, he wants to treat for parasites. He said Lyme almost always comes with parasites and it's important to treat for that first. They couldn't give me a clear estimate on how much that will cost because it depends on the pharmacy/company I use and whether my insurance will cover it.

Finally, the Lyme treatment will be through IV, although it isn't antibiotics. He said he uses a more natural approach that has a very high success rate. I've already been through one course of antibiotic treatment that didn't work, so I can get on board with going with something other than antibiotics. Because I was having a terrible brain day, I didn't even ask what exactly the treatment was. All I know is each treatment is between 2-8 hours long, 3 times a week, for two weeks, and it costs by the hour. The total for the IV treatment will be around $3,600. Once that is complete, they'll retest for Lyme and he expects it to come back negative.

He told me that I could finish up the month of Cowden protocol that I have, but that he didn't see a reason for me to continue it.

I would just really like opinions on this treatment plan and to know if anyone else has done something similar. At probably $4,000, this isn't a decision I'm taking lightly, especially since I'll be relying largely on the goodwill of others to cover the cost. He seemed very confident in the treatment plan, I'm just a little wary. I'd love any info I could get on this!

Girlie said...
I have to ask - is this a Lyme Literate Dr.?

The reason I ask - is he/she said you will be tested after the IV therapy is finished...and it's expected to come back negative.....
uh oh

A Lyme Literate Dr. should know that testing does not tell you if you are healed.

Also, just two weeks of treatment? How long have you been sick? Even catching it right away involves more than two weeks of treatment. I think the life cycle of lyme bacteria is 4 weeks....and it's only killed in one stage of the life cycle....so you need minimum 4-6 weeks to kill it all...and then a few more weeks...to ensure.

I think you need to ask what is in the IV treatment...

So far, I don't like what I'm seeing about this Dr.

I'm glad you posted this...Are you in touch with any of his other patients? Anyone on this forum who see him?

Thanks for your reply! He was on the few LLMD databases I searched in. It was either him or a naturopath in my town, so I went with him. He's an OD, not an MD, so I guess technically he's an LLOD. I got bitten in August 2015, so it hasn't been too incredibly long. But yes, he said it would be two weeks. The first week would be Monday 2 hrs, Wednesday 4 hrs, Friday 6 hrs, and then 8 hrs Monday, Wednesday, and Friday the second week. He did tell me what it was but I didn't write it down and I can't remember. I'll be calling him on Monday to clarify!

Ravenclaw - I think you should ask - maybe phone the receptionist and ask if he is ILADS trained/member.
You don't have to say who you are.

Follow up with ILADS and give them a call.

If he's wrong on a few basic knowledge items...I don't think I would trust his protocol...and if only treatment was that quick and easy....(it's not)

So - you contacted ILADS?

What kind of search did you do?

Ravenclaw -

I join Rikky1 and Girlie with the concern about this doctor.... and I agree with what's been said already.

Heck, I started treatment the day after I pulled the tick out of my abdomen. My signature tells my story.

No way no how does anyone heal in two weeks of *any* treatment protocol that was started almost 5 months after the bite - sorry.

I really question whether or not the doctor is ILADS-trained. He's given you a LOT of misinformation.

Please save your money and get another opinion.....and be sure you get the doctor's name from ILADS. (as in, you go to their site, provide contact info w/email and they send you contact info for LLMD's within a certain geographical area that you indicate)

Better to spend another $400 than close to $4K for quite the questionable treatment.

If you're looking for a more natural protocol, Buhner's protocols are proving effective for many of us - myself included.

Wow. It looks like we are ganging up on you. I want to assure you that is NOT what's happening. You will see more and more people post their concerns with this as well, because we want to see you heal.

Yes, so sorry - I hope against hope that you don't feel we are ganging up on you. We are just very much aware of what constitutes effective treatments and what just doesn't sound right.

Believe you me, if that IV treatment this doctor is proposing is successful for many people, we'd know about it. Our volunteer efforts here would be a lot easier, trust me :)

Dealing with these infections is scary enough. We care very much about all the members on here and want to see them get well.

Well, I guess you can be a member and not follow guidelines...

I am so relieved you posted again, Ravenclaw.
We are concerned for you, and just don't want you to go down a path...that doesn't get you anywhere.


I know you don't want to spend the extra money on another consult...but you could be wasting your money on the treatment the other Dr. uses, anyway. (I don't know of a non-antibiotic IV treatment that has effectively treated someone with Lyme in two weeks)

At this point it is only $400 - but if you allow him to treat you...and then have to see another Dr. after - then it's $4,000.

I would encourage you to stick with a Lyme Literate doctor. Read the posts complaining about doctors if you want to see what you will face. It's almost always a disaster.

Remember one of your first post where you were asking for help in understanding your test results? You said:
" So I was diagnosed with Lyme Disease in October after being bitten in August. I was treated with Doxy for a month and told I no longer had it. Two weeks ago I got retested after experiencing a lot of problems with concentration and fatigue and was told it was positive. They referred me to an infectious disease doctor who I found out won't even see me without 4 positive tests."

That's what typically happens when we use these other doctors.- we get the run around or we are flat turned away. You can tell those family members that you've tried that route already.

Most of us here ARE NOT trying to sell you something, and if you tell me when a member here does, I can take care of that as well. That's not what this site is here for. We are a support site only - no selling allowed.

This IS confusing, it is for almost every single one of us. That's why I have stuck around. The only agenda I have to do my best to help others understand what they are facing and to help provide good information.

I would suggest that you call this doctor on Monday to find out what is going on, then post it here. If you need to find another LLMD, find one that sounds good to you, then ask for opinions on here (we can explain how to do it without breaking the rules).

If you feel the need to try the VA, then please use these resources. I've talked to a handful of Veterans looking to go through the VA, and they have told me a few things:

Dealing with the military is different than dealing with the general public doctors, so check out these links for more help:
www.lymenet.org/SupportGroups/UnitedStates/Alaska/Military.shtml

/groups.yahoo.com/neo/groups/MilitaryLyme/info

lymedisease.org/news/touchedbylyme/former-military-lyme-warrio.html

/sites.google.com/site/drjoneskids/military-lyme

www.professionalsoldiers.com/forums/showthread.php?t=23818

Don't rush into anything. If you feel I might be helpful to you, feel free to email me - or one of the other Mods.

For whatever it's worth, the LLMD I saw was referred to me by ILADS....and I honestly think he dropped the ball with me.

I suspect it was because my symptoms were so very mild. I know he told me he was concerned about my gut microbiome.

He clinically diagnosed me with Lyme due to the mild Bells Palsy he noted. The dx was backed up with CDC positive WB.

However, my symptoms were all neuro and my research told me that Bartonella should be considered in situations such as this. Throw in the fact that I live in NJ where 70% of the ticks tested were positive for Bartonella and I think he should have pursued things more.

I was only prescribed doxycycline and amoxicillin which only treat Lyme. He didn't even prescribe Probenacid which I now know is necessary to maintain effective levels of amoxicillin in the blood since it has a short-half life.

He had me go off abx in February (after a lot of herxing and me being "down" to mild peripheral nervous system symptoms). I was told to start an herbal protocol and was given a choice of Buhner, Cowden or White.

If I had known from the beginning that he was going to do this, I would have researched the protocols more thoroughly. Feeling up against a wall to maintain continuous treatment, I chose Cowden for simplicity. (the entire protocol schedule is available online).

When I reported the Babs/Bart herxes I had on Cowden's herbs geared to those infections, he shrugged.

When I transitioned to Buhner's full protocols for Lyme, Babs and Bart and shared the herx symptoms with him then, he told me he thought my infection was worsening (this was very wrong).

He would not consider a coinfection diagnosis without more testing - even though he acknowledged that the tests are unreliable.

ILADS and even the CDC says these infections are diagnosed clinically - based upon symptoms.

So many LLMD's continue to be persecuted by insurance companies (mine accepts insurance)...and medical boards. I wondered if he was concerned about that.

I declined the tests and, at that point, my LLMD told me he didn't think there was anything more he could do for me and acknowledged that I knew more about herbs than he did (which makes sense - he's not an herbalist). He left the door open should I ever want to go back on abx but we both agreed that my symptoms were too mild to warrant it.

My LLMD never mentioned let alone treat for cysts or biofilm even though I mentioned both topics several times. He felt everything was "too new".

All LLMD's - even those trained by ILADS - are not alike.