Interesting visit with Dr Montoya

[NK17]

Can I ask have you had viral testing from your GP?


Re the above article - If I had MS I would be on this drug now. One of the saddest cases I ever worked with in my career was a young woman who developed MS after a pregnancy. She deteriorated so fast she was in a chair being spoon fed within 12months, had to go into a nursing home for care, I doubt she is still alive. I became ill shortly after that. If it turns out that antivirals can help these patients - another criminal negligence one to chalk up to the medical profession.

I can talk about my own experience with GP:
I had an initial viral testing for most of the viruses in the herpes family and no 'regular' doctor would prescribe any of the A/V, not even Famvir at a low dose (which would probably not have made any dent in the viral replication cycle and high IgGs) and just mentioning Valcyte made most of the drs uncomfortable if not literally jump from their chairs.

As far as MS - which originally was one of my differential diagnoses - I read daily what I think is the best blog about MS and its DMT (disease modifying treatments): www.multiple-sclerosis-research.blogspot.com of Prof. Gavin Giovannoni's team @ Barts and the London and I personally know somebody severely affected by MS and I doubt it would be easy to find a knowledgeable and open minded neurologist willing to prescribe antivirals.

Although they have and use many different chemotherapies for MS the antiviral, or retroantiviral route, is still in its infancy.

Prof. Giovannoni and Jonathan Gold have started a pilot study with Regaltravir (one of the HIV treatments) in MSers, based on the rationale that it has been observed to put into complete remission the MS of an Aids patient, affected by both diseases, back in 1995!

The same group is also the strongest supporter of the medical hypothesis of EBV role as a triggering factor in the development of MS.

Just to put this in perspective:
95% of the world population is EBV+ but only if you are EBV+ you can develop MS.
Prof. Alberto Ascherio from Harvard has conducted the most in depth epidemiological studies on the link between EBV and MS, which confirm its role.

There are clusters of MS right now and in the past and no serious scientist is willing to state that sporadic MS cases and clusters can't coexist, which is what we have been hearing from some authorities about ME...

There is so much work that needs to be done for PWME. I personally think that the first step is the recognition and classification of ME as a neuro immunological chronic pathology, as serious and as handicapping as MS.

IMHO we have a lot to learn from this group of researchers/physicians because MS and bona fide ME are both neuro immunological diseases and I'm ready to bet that in a large subgroup of PWME Infectious Mononucleosis (EBV) was the agent that created a crack in the host immune system.

Please excuse my long post .

 

[maryb]

Thanks for that post, yes my EBV were high on a number of occasion over the past few years, never once tested by my GP though, I had to go to B/spear to find out what was causing my terrible symptoms at the time. Even they weren't prescribing long term a/virals then, but I probably wouldn't have taken them, I started out on this illness so very anti drug, now I feel differently.

I have a lot more neurological symptoms now than I did then, whether its to do with the recent amalgam extraction I am trying to decide.

I often think if I'd been tested for viruses when I first became ill what would the outcome have been? Could I have carried on working, paying tax, having a life? What is it costing the government not to test? NICE don't ever factor that in their stupid cost cutting decisions.

 

[minkeygirl]

What do you do when you can't take any A/V? I had a horrible reaction to Valtrex, horrible constipation with Famvir and now even a low dose at acyclovir, which I never had a problem with, screws up my sleep so bad only got 45 minutes a night.

I'm going to try Famvir and acyclovir again after some immune modulators.

Very frustrating.

 

[leokitten]

Is there any other evidence that other antivirals work like this? I ask this as there is information about MS patients responding well to valtrex but they are saying this is due to its effects on ebv, a possible cause of MS??

In the same paper the authors mention that they also used a radiolabeled analogue of penciclovir to see, if like gancicolovir, it accumulated in the inflamed brain in this mouse model of MS (EAE mice). This radiolabeled analogue of penciclovir accumulated and was retained in the brains of EAE mice but not control/naive mice.

Famvir is the prodrug to penciclovir.

Let's not go out on a limb but what this paper is stating is that nucleoside analogue antivirals might have another mechanism of action that is not yet understood.

 

[maryb]

@leokitten
It sounds interesting, I have major brain fog today and would be so grateful if you could explain the findings simply for me. I can read stuff but have problems processing it.

 

[ebethc]

Hi Grigor,

I was treated for 7 months in 2007 with a starting doses 1800 mg/day for three weeks followed by 900mg daily. I was very sick from the medication and didn't improve until I was off Valcyte. This time around he started me at 225 mg/day and increased the dose over two months until I reached the therapeutic dose of 900 mg/day. Montoya no longer uses a high starting dose because of the number of severe bad reactions and generally treats for longer than 6 months. Probable 2 years for me. This time around I didn't suffer any down side from Valcyte with this slower protocol.
Best,
Gary

@Butydoc - Does the Valcyte protocol taper down to a "maintenance" dosage, or do you just do it for a period of time (6 mos? 2 years?) to "reboot" your body? I have high CRP & SED rate, and high EBV IgG titers... Maybe this could be help, if I can afford it.

Which leptin test(s) do you get?

Is Dr Montoya taking new patients?

thanks.

 

[LifeIsSweet]

Hi,

I'm new to this site and I'm not sure if I'm posting correctly. I was intrigued when you wrote:
"Presently he is using colchicine as his first line anti-inflammatory drug with some very promising results. He still doesn't know if this is the best choice, but it is a good starting point."

I researched colchincine and there is one study* that says that the drug actually causes fatigue. So, I'm confused. Has it helped you?

Alas, I have not found an affordable doctor in Petaluma, CA who is willing to prescribe antivirals. So, I'm considering going the herbal route. Some folks claim to have had success with Olive Leaf Extract. Apparently, the resulting herx reaction is pretty heavy duty. There are several other herbs that serve as both antivirals and anti-inflammatories. I'm wondering if taking several herbs would be more effective than just taking one or two. Google this article; it's the mother load: Inhibitors of Microglial Neurotoxicity: Focus on Natural Products.

I'd appreciate an update on your condition. I hope you're feeling much better.


* The study: Fatigue as the Only Clinical Manifestation of Colchicine Induced Myopathy

 

[bmoberg337]

It's good to see that some patients here have had success with Montoya's treatment strategies.

Personally I was misdiagnosed by his clinic. They believed my high ebv IgG titters (which remain high indefinitely if you have/had mono) were the root cause of my symptoms when I actually had lyme disease. Needless to say antivirals did nothing for me.

I still appreciate the work they do there, but recognize that a lot of specialist operate within a vacuum. Unfortunately it is up to the patient to do the research to ensure you are following the right treatment approach.

 

[heapsreal]

It's good to see that some patients here have had success with Montoya's treatment strategies.

Personally I was misdiagnosed by his clinic. They believed my high ebv IgG titters (which remain high indefinitely if you have/had mono) were the root cause of my symptoms when I actually had lyme disease. Needless to say antivirals did nothing for me.

I still appreciate the work they do there, but recognize that a lot of specialist operate within a vacuum. Unfortunately it is up to the patient to do the research to ensure you are following the right treatment approach.

Might be interested in this article
http://www.biomedcentral.com/1471-2334/11/281
basically they arent finding it on its own in causing cns infections, so having lyme could be the reason of no response to antivirals. This is also something dr lerner mentions??

Are you having any success treating lyme??

 

[Gingergrrl]

Just read this entire thread and it is very interesting. I think I'd read parts of it before but never the whole thing.

Did Dr. Montoya end up publishing all of his findings or is it still pending? Does he still use Colchicine or other anti inflammatories?

If someone gets tested for Leptin, how does this info get applied into practical terms? Are certain protocols followed?

I hope everyone in the thread who is still around on PR can post an update of how they are doing and which protocols they are using (only if they are comfortable of course!)

 

[Sushi]

I'd appreciate an update on your condition. I hope you're feeling much better.

I think you may be addressing @Butydoc. If you wish to draw a member's attention to something you are posting, use the tagging system I just used and they will get an alert.

Best wishes,
Sushi

 

[halcyon]

Did Dr. Montoya end up publishing all of his findings or is it still pending?

I looked on PubMed but didn't see anything from him this year on ME/CFS.

 

[Butydoc]

Hi,

I'm new to this site and I'm not sure if I'm posting correctly. I was intrigued when you wrote:
"Presently he is using colchicine as his first line anti-inflammatory drug with some very promising results. He still doesn't know if this is the best choice, but it is a good starting point."

I researched colchincine and there is one study* that says that the drug actually causes fatigue. So, I'm confused. Has it helped you?

Alas, I have not found an affordable doctor in Petaluma, CA who is willing to prescribe antivirals. So, I'm considering going the herbal route. Some folks claim to have had success with Olive Leaf Extract. Apparently, the resulting herx reaction is pretty heavy duty. There are several other herbs that serve as both antivirals and anti-inflammatories. I'm wondering if taking several herbs would be more effective than just taking one or two. Google this article; it's the mother load: Inhibitors of Microglial Neurotoxicity: Focus on Natural Products.

I'd appreciate an update on your condition. I hope you're feeling much better.


* The study: Fatigue as the Only Clinical Manifestation of Colchicine Induced Myopathy

Hi LifeIsSweet,

I'll start with your last question. I'm probably functioning at 70-75% of my pre CSF/ME physical and mental state. I can ski and play tennis, but not as aggressively as I would like. Work would still be a challenge for me because of the time demands. My life has clearly improved substantially since I started treatment with antiviral, antimicrobials and immune modulator drugs. I'm not sure if the antiviral drug and antimicrobial drugs worked because of their antimicrobial actions or their immune modulating properties. I stopped all my drugs approximately 4 months ago because of elevated liver enzymes and decreasing creatinine clearance. I've been able to hang on to my gains.

I'm not sure if colchicine was much of a benefit for me. Montoya claims many of his patients have seen major improvement with this drug.

I personally believe that the greatest chance for improvement will probably come from working with an CFS/ME specialist. Dr. Montoya accepts most insurances, including medicare. I don't know if he accepts Obama Care.
Unfortunately he has a very long waiting list for new patients.

I'm not very educated on the use of herbals for CFS/ME patients.

I'll be seeing Dr. Montoya the second week of January. I'll post a follow after my visit. If anyone has a question you might want answered by him, please send me a pm.

Best,
Gary

 

[Gingergrrl]

@Butydoc that is very generous of you and I might be sending you a PM with some questions... Don't worry it won't be too many!

I tried to see Montoya back in July but was told he is no longer seeing new patients and only doing research (but seeing existing patients.). There was a long wait to see one of his PA's and I ended up going to OMI instead and am very happy with them.

I am just curious as to the different approaches and research he has done.

 

[out2lunch]

If someone gets tested for Leptin, how does this info get applied into practical terms? Are certain protocols followed?

At the risk of muddying the waters, I'm going to ask if anyone doing Shoemaker's testing has discovered my problem: very low leptin levels.

I've got all the typical traits of a CIRS patient: Multi-susceptible HLA plus Chronic Lyme HLA, low MSH, very low VIP, very low ADH, very high TGF-B1, elevated C4a. The only values that aren't abnormal are VEGF and leptin.

But my leptin levels are below the normal range for both Quest and Labcorp. Quest has a cutoff of 4.7 ng/mL for my BMI, but mine is 3.6. Labcorp's cutoff is 4.4 ng/mL but their result was 3.7.

My doc doesn't know what to make of this, since he's never seen leptin levels this low in someone who's not rail thin. I'm not considered overweight nor have I ever been obese, but I do have a fair amount of adipose tissue between my waist and knees like most postmenopausal women of a certain age. (You ladies know exactly what I'm talking about. )

The reason why I'm concerned about my low leptin has to do with Shoemaker's chart about the Biotoxin Pathway:

http://www.survivingmold.com/diagnosis/the-biotoxin-pathway

Seems like everything hinges on the hypothalamus taking up leptin so that MSH, VIP, and ADH can be produced in adequate quantities.

But my leptin is very low, so there isn't a lot to take up.

Question is… is my leptin too low?

And is that why I can't seem to get anywhere with my treatment?

 

[Ema]

At the risk of muddying the waters, I'm going to ask if anyone doing Shoemaker's testing has discovered my problem: very low leptin levels.

I've got all the typical traits of a CIRS patient: Multi-susceptible HLA plus Chronic Lyme HLA, low MSH, very low VIP, very low ADH, very high TGF-B1, elevated C4a. The only values that aren't abnormal are VEGF and leptin.

But my leptin levels are below the normal range for both Quest and Labcorp. Quest has a cutoff of 4.7 ng/mL for my BMI, but mine is 3.6. Labcorp's cutoff is 4.4 ng/mL but their result was 3.7.

My doc doesn't know what to make of this, since he's never seen leptin levels this low in someone who's not rail thin. I'm not considered overweight nor have I ever been obese, but I do have a fair amount of adipose tissue between my waist and knees like most postmenopausal women of a certain age. (You ladies know exactly what I'm talking about. )

The reason why I'm concerned about my low leptin has to do with Shoemaker's chart about the Biotoxin Pathway:

http://www.survivingmold.com/diagnosis/the-biotoxin-pathway

Seems like everything hinges on the hypothalamus taking up leptin so that MSH, VIP, and ADH can be produced in adequate quantities.

But my leptin is very low, so there isn't a lot to take up.

Question is… is my leptin too low?

And is that why I can't seem to get anywhere with my treatment?

Leptin has a clear diurnal rhythm with levels highest at night and in the early morning and lowest around noon and in the early afternoon.

Is it possible you caught a low trough?

Have you considered retesting?

When I was looking at leptin, I found that my level did seem to fluctuate quite a bit which made it more difficult to interpret.

 

[out2lunch]

Lepton has a clear diurnal rhythm with levels highest at night and in the early morning and lowest around noon and in the early afternoon.

Is it possible you caught a low trough?

Have you considered retesting?

When I was looking at leptin, I found that my level did seem to fluctuate quite a bit which made it more difficult to interpret.

I knew about the diurnal part, like cortisol, but I didn't know it varied that much.

Testing at night is virtually impossible except in a hospital, and most draw stations don't open before 8 AM.

How "early" does early morning need to be to see a significant difference from testing done in late morning? That's when I did mine.

 

[Ema]

I knew about the diurnal part, like cortisol, but I didn't know it varied that much.

Testing at night is virtually impossible except in a hospital, and most draw stations don't open before 8 AM.

How "early" does early morning need to be to see a significant difference from testing done in late morning? That's when I did mine.

I'd probably just try to get there when they open.

Optimal leptin is typically considered to be between 4-6 so your level is just a bit too low. Further the range is pretty narrow. Most consider a level above 10 to indicate some degree of leptin resistance. So it wouldn't really need to vary all that much to come up into the optimal range.

If anything, I'd think about looking at growth hormone and testosterone which both go along with lower leptin. It may be that one of those is playing a role.

Probably this is better split off into a new thread? Not sure how far off track we are getting here on this one...

 

[IreneF]

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.

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. 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.

 

[out2lunch]

I'd probably just try to get there when they open.

Optimal leptin is typically considered to be between 4-6 so your level is just a bit too low. Further the range is pretty narrow. Most consider a level above 10 to indicate some degree of leptin resistance. So it wouldn't really need to vary all that much to come up into the optimal range.

If anything, I'd think about looking at growth hormone and testosterone which both go along with lower leptin. It may be that one of those is playing a role.

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.

Like most folks with ME/CFS/FMS, I have some GH deficiency, along with other pituitary hormones like prolactin. Partially empty sella seen on MRI is presumed to be the cause. I know many of us have pituitary problems like this.

Probably this is better split off into a new thread? Not sure how far off track we are getting here on this one...

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