Dr J Visit

I had my initial visit with Dr J in DC yesterday. It went good and bad.

The PA I had was awesome! She listened very intently and addressed all my concerns. I was also seen by Dr J. I really like both of them.

However, I got some news that I really didn't want to hear. But, I was sort of expecting it. During the examination, the PA noticed one side on my tongue was lower than the other. She was also concerned with one of the coordination tests she conducted involving my legs. I have been well aware of my leg issues, but the tongue weakness on one side is new to me.

Dr J came in and checked everything out. He mentioned that my lower motor neurons were being affected. But, the good thing was that he didn't notice any muscle wasting. They asked if my swallowing has been ok. Which, up to this point, it has.

They say only 20% of their patients are recommended for IV therapy. And they are strongly recommending me to be on this therapy. I have swelling on the brainstem and he wants to hit this aggressively before it gets worse.

The bad news is is that IV therapy is not covered by my insurance. The estimated time of therapy is 7-9 months which leaves me with trying to come up with right around $50,000 to cover the whole thing.

This is quite disheartening as I'm not sure how to come up with that kind of money. In the meantime, I have been prescribed a different oral protocol, which they were honest with me and told me they weren't sure if it would work.

Anyway, I highly recommend the practice. They are very attentive, professional, honest, and nice. My next appointment is early January. I just hope my next visit involves getting an IV installed.

We'll see...

Ask if IM Rocephin will help and check if that is covered. IM is covered under RX plan and not as expensive as the IV version covered under medical.

No LLMD is 100% sure any of this will work. I once looked this up and the blood concentrations were pretty close. Google IV vs IM Rocephin

Hoagie said...
On a side note....

this may be common knowledge at this point in the Lyme community. But, I was unaware.

I told my PA that I had the bullseye rash last year after the tick bite. And she said that Dr J believes the bullseye rash is an indication of past Lyme exposure. The bullseye rash is the reactivation of Borrelia. That was crazy news to me. It means that I may have been infected over 20 years ago. I remember finding a tick embedded in my upper thigh as a teen in Florida. That would be crazy if I have been harboring this since then

Really?! I wonder what makes him think that? Maybe the fact that many never get it?

How was it determined you had brainstem swelling? (imaging?)

consistent application of DMSO at the base of the skull for 2 - 3 weeks will likely take care of the brain stem swelling. I have had incredible results with that.

This is the same thing as IH basically, ie inflammation of the CNS/brain

Hi Im glad you had your visit with the J clinic. Now at least you know what you need to do and what is causing many symptoms.

You should consider starting a go fund me page.

You may also be able to search for a foundation/endowment that helps people with medical needs and or Lyme related medical needs.

I haven't checked, but its possible that someone famous/wealthy that had Lyme and co might have started a foundation to help others. Its something to check out.

Are there any research/studies going on anywhere with this IV drug maybe you could get it that way( I'm just trying to think outside the box)

Well, I hope the best for you and your family, there has to be a way.....Jo

goshawk said...
Hi Im glad you had your visit with the J clinic. Now at least you know what you need to do and what is causing many symptoms.

You should consider starting a go fund me page.

You may also be able to search for a foundation/endowment that helps people with medical needs and or Lyme related medical needs.

I haven't checked, but its possible that someone famous/wealthy that had Lyme and co might have started a foundation to help others. Its something to check out.

Are there any research/studies going on anywhere with this IV drug maybe you could get it that way( I'm just trying to think outside the box)

Well, I hope the best for you and your family, there has to be a way.....Jo

Thank you for this info!!

With your post in mind, I did a little searching round the web and found a clinical trial being conducted in Maryland.

/clinicaltrials.gov/ct2/show/NCT00001539?recrs=ab&cond=Lyme+Disease%2C+Nervous+System&cntry1=NA%3AUS&rank=1

The only thing I don't like about it is they only treat with Rocephin.Dr J is saying that Rocephin doesn't work that well for a lot of his patients.

Rikky1 said...
Hey Hoagie what did you think about Dr. J's funky red dress shirt? LOL. I looked at it for too long and started getting dizzy.

Listen Dr. J knows his **** if he says you need IV therapy as the best option to get better well then you probably do. What is your new protocol?

Lol! I almost felt star struck when he walked in.

Him and AW were both great. I definitely want the IV therapy. But it is so expensive, and I don't know how to get that kind of money. For now, they have me switching to Mepron, Omnicef, Bactrim, Flagyl, and some herbs snd supplements.

I have been corresponding with a forum member who has her sister at the Sanoviv clinic in Mexico. They have her in a 2 week treatment. Sounds super aggressive, but from the reviews I've read, it sounds like a pretty successful treatment. She just started treatment. I'm anxious to hear the results as I have some of the same type of symptoms as her sister. The price for the treatment is about half of what I'd ne paying for IV therapy with Jemsek.

Girlie - Yes, that's her. From what she is saying, they do stem cell treatment as part on their neuro protocol. They also do hyperthermia therapy and then go straight in with IV Rocephin and Flagyl. Sounds super aggressive.

Hoagie said...
On a side note....

this may be common knowledge at this point in the Lyme community. But, I was unaware.

I told my PA that I had the bullseye rash last year after the tick bite. And she said that Dr J believes the bullseye rash is an indication of past Lyme exposure. The bullseye rash is the reactivation of Borrelia. That was crazy news to me. It means that I may have been infected over 20 years ago. I remember finding a tick embedded in my upper thigh as a teen in Florida. That would be crazy if I have been harboring this since then

WOW this could be revolutionary

This is new to me. The implications are fascinating. I wonder if any scientists have tested this hypothesis. It makes sense.

It would be very difficult to test without deliberately infecting humans (which is obviously not done for good reasons).