Interesting visit with Dr Montoya

[out2lunch]

One of the findings of the big Stanford/Columbia study was that leptin, in particular, varied depending on how long you have had the disease. First it's too low, later it's too high.

Here we go again. I just hate it when my flavor of ME/CFS/FMS differs from others.

I've had this @#$% disease for 25 years, possibly longer. I never fully recovered from the CMV mono infection I got in 1989, which only got worse as time marched on. And a solid case can be made for having fibro many years before that, possibly even in my teens.

So here I am, 25 years in, and my leptin is acting like someone who recently got sick. Which makes me think that whatever it is that shifts in us for this change to occur, never happened in me.

I am still taking colchicine and Valcyte. My most recent kidney and liver tests were within normal range. I've been taking them for five or six months. I can't say if they are helping me. I had a very good October but November was bad. I think one has to give these drugs a very long time to get any benefit.

And there's a part of me that wonders how much, if any, damage we're doing to our bodies by taking drugs for months on end. I took Suprax and Flagyl for over a year to get my Lyme out, and we're still not sure if it's actually completely gone. But I'm confident I really screwed up my gut permanently by doing that. Even with a strict diet and awesome probiotics every day, my gut is nothing like it was before I took those antibiotics.

I'm going to try harder to resist the temptation to do things when I feel better, and spend my time in bed or on the couch. My cat appreciates it even if no one else does.

I know the feeling. My 20-year-old kitty passed away after Labor Day. Golly! Do I ever miss him on those days I need to stay on my butt. It's good to have the fursters around when you're feeling icky.

 

[bmoberg337]

Are you having any success treating lyme??[/QUOTE]

Thanks for sharing the article, definitely will spend some time reading it.

I started treatment for lyme co-infections (I had 4) 4 months ago. After a month on cipro and clarithromycin my antibodies for bartonella dropped by 70% and I was no longer testing positive for ehrlichia chaffeensis. My antibodies against anaplasmosis also improved, but my antibodies against rickettsia have not changed.

Despite this progress my symptoms have not changed suggesting that these particular infections could have otherwise been latent and asymptomatic without an active lyme infection. My C4a continues to climb (now at 12000) and my NK CD57 continues to drop (now at 7), which could indicate that the lyme is getting worse. Hoping they start me on the lyme treatment next month.

 

[Sushi]

This is probably a good idea. Not sure how to split a thread, though.

Only moderators can split threads but it isn't done as a routine practice as it takes a fair amount of work. You can just start another thread and continue the discussion there and leave this one for discussion of Dr. Montoya's work and patient experience.
Sushi

 

[Ema]

Ema, would you please elaborate on how they play a role? I'm assuming you're referring to deficiency in GH and excess in testosterone. Or maybe not.

Typically lower leptin levels go along with deficiencies in both GH and testosterone.

If you start a new thread, we can ask for these few posts to be moved there to carry on conversation if you like.

I'd be curious to know if you are replacing any of the hormones that are low due to the partial empty sella.

 

[out2lunch]

Typically lower leptin levels go along with deficiencies in both GH and testosterone.

If you start a new thread, we can ask for these few posts to be moved there to carry on conversation if you like.

I'd be curious to know if you are replacing any of the hormones that are low due to the partial empty sella.

I do have a mild GH deficiency, but I haven't done the GH stim test which Medicare requires for prescription reimbursement. High dose arginine, which is part of the test, is not recommended for someone with chronic EBV infection like me. I'd rather not feed these beasties if I can avoid it.

I tried low dose GH about 10 years ago when it was cheaper (paid out of pocket) but didn't really notice much improvement in my symptoms. The only positive was a slight uptick in my bone density.

I did attempt taking DDAVP for virtually nonexistent ADH, but ended up in the ER with hyponatremia, so I'm highly reluctant to try again.

 

[MeSci]

Just spent some time this am with Dr Montoya. He now claims he can prove that inflammation is a major component of CFS. He hopes to have his results published before the Stanford symposium.

The most interesting piece of new information was about the super cytokine Leptin. One of the professors at Stanford measured the cytokine level, including Leptin, daily on a large number of patients. He had them fill in a questioner about how they felt each day and then matched their blood work to the answers. What he found was that the Leptin levels would rise or fall consistent with the patients level of fatigue. Apparently Leptin is a pro inflammatory cytokine.

Does this mean that Leptin can be used to monitor ones progress or aid in the diagnosis as a bio marker? Can manipulating Leptin be a potential treatment? Again, very interesting and exciting. This Leptin results may also suggest why diet may play a role in our disease.

Just seen this thread and thought I'd post a link to my thread on leptin relating to a study whose authors include Montoya. Sorry if someone's already done it but I wanted to do it before I forgot! Will read this thread now (at least until my brain or eyes give out!).