went to Stanford CFS clinic -- a bit confused about treatment plan

[el_squared]

Hi there,
This is about my appt yesterday with Dr. Bonilla, a new doctor in the Stanford CFS clinic. After a 45 minute appt that was sort of chaotic with the give an take of him trying to get my background and me needing to ask questions, he told me to

1) pace myself and greatly reduce my already extremely reduced activity, saying something about expending energy depletes my mitochrondria (I had told him about doing some walking recently and then in the subsequent days being extremely weak and sick);

2) to follow an anti-inflammatory diet (he not surprisingly recommended the Mediterranean diet);
3) to take curcumin/tumeric and Co-Enzyme Q10 in the form of Ubiquinol; and

4) Take 500 mg of biaxin daily. He gave me a prescription with a year of refills! This came after I talked about my SIBO diagnosis and feeling better when previously taking Xifaxan.

About the antibiotics, I thought it was a bit strange because he started off talking about how research was showing that CFS patients had less diverse flora than healthy people. So I was trying to ask him why the long-term antibiotics when he doesn't believe in Lyme (which I have been dx'd with -- see below) and when he thinks gut flora. I think it's because of the SIBO and because he thinks that SIBO and leaky gut are problems and that the abx can help with leaky gut. But again there was a communication issue for various reasons.
So, I'm wondering what people think about this treatment protocol. He as also adamant about me not having chronic Lyme despite my two recent positive tests. As for antivirals, I have taken them, but I didn't stick with them in the past due to their extreme side effects. Dr. Bonilla says he sees a lot of people improving on them, but that he didn't want to start me on them until I came back for the next appt in 3 months.

Now I'm going to give you some background if you are able to read on:



So I was dx'd with CFS in 2015 at the Stanford CFS clinic. I had been dealing with fatigue, pain (also had a fibro dx), and gastro issues for 20 years (I'm 48 now). In 2005, I was dx'd with Celiac Disease (and I seemed a classic case) and went gluten free immediately. But as the years went by my pain and fatigue issues increased. After numerous episodes of being bed bound, I got into the Stanford clinic and was dx'd CFS by a nurse practitioner there.

So I had trouble following their treatment plans, which involved antivirals and also LDN and also an herbal supplement for enteroviruses, which I tested high for. Maybe I should have tried harder, but the antivirals crippled me and made it hard to work.

Meanwhile, as my health ground me down to a non-functioning cripple, my dad paid for me to go to a functional med MD. Through two tests, she dx'd me with Lyme. This was last year, summer of 2016. By then I was having neurological problems (involuntary movements, big convulsions involving my head snapping back and forth and my arms and legs flicking out. This issue has died down, but it's still there, daily). So I wasn't positive on the FDA/CDC definition of the Western Blot. Close but not there. I was positive by Igenex's defintion, and I was also positive on a blood test that is a 4-month culture done by Advanced Laboratory Services.

So, then I was supposed to do a Lyme protocol. The functional MD recommended doing the Buhner herbal protocol. Then she promptly disappeared from the practice. I finally got in with another MD who treats Lyme in the Bay Area. He has ordered a ton more tests, even though I've already done a ton of tests (SIBO breath tests, gastric emptying test, Adrenal test, Doctor's Data stool test, the Lyme tests, mold genetic tests), having to do with Lyme, mold (I used to live in a mold-contaminated apt), and gastro issues. I have not had the energy to get this new litany of tests done. He recommended a battery of supplements, digestive enzymes, bio film disrupters, and so on, and a lot of them I react horribly to. So I'm not doing anything right now, in the interest of keeping my job.

Meanwhile, the CFS Stanford clinic calls and says that while I can't see Dr. Montoya (previously the only MD and head of the clinic) I can see the new Dr. Bonilla. And he's who I saw yesterday, as described above.

 

[jpcv]

Items 1,2 and 3 make sense.
I´m not familiar with the treatment of leaky gut; maybe start with probiotics? Anyway, you said that you got better when you took antibiotics in the past....

 

[ljimbo423]

I had been dealing with fatigue, pain (also had a fibro dx), and gastro issues for 20 years

My bolding.

I also had significant gastro issues for years before I developed full blown cfs. After 10 years of reading and research, I have become completely convinced that my cfs/fm started in my gut.

It started with sibo/dysbiosis I had for many years, that lead to a leaky gut, that lead to immune system dysfunction and all my symptoms.

I have also learned through trial and error, that a low carb diet is absolutely essential. In the last few months my health has improved greatly, from a low carb diet, a course of rifaximin, herbal antibiotics and high dose probiotics. I continue to improve noticeably, almost week to week.

Treating the gut is hard and takes a long term commitment, but I believe it's more than worth it. Because sibo/dysbiosis is so hard to treat, I think that's probably why he gave you a one year refill on the Biaxin.

 

[TrixieStix]

@el_squared

I
too was dx by my ME/CFS specialist with Lyme, but I disagree with the diagnosis. I do not believe I have Lyme. I am "igenex positive" for IGM and also "CDC positive" for IGM (via a standard lab) but IGM is known to have a high rate of false positives. I also do not have the typical symptoms associated with an untreated late-stage Lyme infection. I'm not convinced.

A
s for the neurological symptoms you described...

"I was having neurological problems (involuntary movements, big convulsions involving my head snapping back and forth and my arms and legs flicking out."

I had similar symptoms for a few month period last year when I was in the worst flare I've ever had that was triggered by a really stressful event (my wedding). I was not yet dx with ME/CFS at that point.

 

[cb2]

HI @el_squared checking in to see how your follow up with Stanford was and what protocol if any you have been trying? I too live in the bay area. I hope you are finding some success.
i am scheduled to see dr bonilla in sept . had been seeing jane norris in the past, and didnt stick with antivirals either.

 

[Suffering Succotash]

I found Dr. Bonilla too inexperienced during my brief encounter with him.

 

[cb2]

yikes @Suffering Succotash this is scary! how long have you been a patient at Stanford? did you work with Jane Norris before? they asked me to send him an 'updated illness symmary" i wonder if it will even be worth the travel time to get there. sorry

mind if i ask are you taking antivirals or what protocol they have you doing , is it helping? thanks

 

[Suffering Succotash]

yikes @Suffering Succotash this is scary! how long have you been a patient at Stanford? did you work with Jane Norris before? they asked me to send him an 'updated illness symmary" i wonder if it will even be worth the travel time to get there. sorry

mind if i ask are you taking antivirals or what protocol they have you doing , is it helping? thanks

I've known Dr. Montoya since 2009. I've known Jane Norris about as long. Dr. Montoya sees patients once per year, according to the staff and Clinic Manager. That's not enough to manage a severe, chronic illness.

Dr. Bonilla is very inexperienced. He was learning the basics of HHV family of viruses when I last saw him. It seemed obvious to me that he was hired not because he was an expert in MECFS but because he is a physician from the country of Colombia, like Dr. Montoya. That's not a credentialed hire for the Clinic, IMO.

Montoya is in the office only 4 HOURS PER WEEK, and he's the only experienced physician in the Clinic. He's not there enough to even train Bonilla.

The PAs are overworked. Katie Vigano is sharp, but she's not a physician. I've heard reports from other patients that the PAs weren't able to get in touch with the physicians for case management, so the PAs are flying blind.

So, at Stanford, there's an experienced physician who is almost never in the clinic and who sees patients once year. He doesn't answer emails or return phone calls. Then there is a very inexperienced physician. And then the PAs who are not physicians (but I know Katie at least tries very hard)

The Stanford CFS Clinic is a sham, I hate to say. Montoya talks a smarmy sales pitch about the CFS Clinic treating patients using a "shared provider" concept but that sales pitch is really a cover-up for him being out of the clinic doing research and on sabbaticals so that he can shift responsibility for healthcare for this serious illness to his inexperienced and unqualified team.
It's unethical.

This illness requires attentive patient oversight and illness management. You're not going to get that at Stanford.

Sorry to put it so bluntly.

 

[Suffering Succotash]

Dr. Montoya prescribed a medication but then never explained what it was for or why he was prescribing it, even though the medication has a very high risk attached. When I asked him questions (emails, telephone, letter), he never responded. Not even once. That's Montoya.


From a different physician, I had good success on Valcyte and on antibiotics for mycoplasma.

 

[cb2]

thanks for this great information @Suffering Succotash . it is quite scary. I hope with Dr. Montoya when he is doing is talks about cfs at least there is awareness going on. what about his research? I think they have to keep doing research to find out how to help us. I dont think they really yet have an answer. I also believe PAs can be very helpful as they usually have more time to spend with us than doctors. and it does sound like they are flying blind down there and it's the PAs that are keeping the ship afloat. so is anything positive happening there?

I am glad you found a dr to help you with Valcyte and the myccoplasma. are you doing better? sounds like dr bonilla is really really new there I believe he is an infectious disease dr. but it seems like they aren't even certain we have an infectious disease that is making us ill, but give out the antivirals with little to know guidance.

I was shocked and disappointed after my 1st first there having been ill for so long and they were like, well come back in 9 months. you are right thats no way to manage a chronic illness.

someone on another form mentioned they are getting a 6 week phone follow up. and it sounds like that PA Katie probably has learned alot and would be the one to see.
did you find a dr in this area (bay area) for your treatment ?


i appreciate your feedback.

 

[pattismith]

Hi cb2,

I'm 50 and some of my symptoms started as a teen. I too believe the gut to be involved from the start.
Microbiome dysfunctions can lead to many deficiencies and immune dysfunctions in your body.

My symptoms also involve crashes, brain fog, memory and cognitive impairment, joints and muscles pains, and many others.

There is a study about improvment of CFS with Azithromycin, an antibiotic of the same family of Clarithromycine, which is the one the doctor prescribed to you (Biaxin).

Some of my symptoms got improved by 4 months of pulsed azythromycin treatment (joints pains), but some got worse, because I was not taking the appropriate supplements I should have taken at the same time.

These antibiotics deplete the intestinal flora that produce the vitamin B1, which is necessary for mitochondria function, enzyme functions and other b vitamins activity.

So yes this treatment can work, but you have to take high thiamine doses together with it, and others B vitamins too.

You will also need strong calcium, vitamin D and magnesium support as well.

Thanks to all the informations share on this forum by patients, I feel much better now, and am currently concentrate on how to keep the positive gains steady.

Take care

 

[Jesse2233]

@pattismith Hi Patti, how much B1 do you think offsets the effects of Azith?

 

[pattismith]

@pattismith Hi Patti, how much B1 do you think offsets the effects of Azith?

hi jesse, I couldn't say, I started Benfotiamine after the end of my azithromycin treatment.
My blood lactates were high (1.3-1.7 mmol/l fasting with high peaks during the day), and now after 45 days of benfothiamine, they are low (0.8-0.9 fasting, and kept in the normal range during the day, below 2.1).
I take 300 mg x3 times per day, but some people may need more, up to 1500 mg/day.

I try to fix my microbiom issues with probiotics, then I may be able to take less benfotiamin,
I still have some symptoms left, but they may be fixed on the long run, well that's my hope

 

[cb2]

HI @pattismith thank you for writing. it is @el_squared that got rx'd biaxan by stanford , she started this thread.

interesting about the zithromax, i take that a few times a year for sore throats.. i have thought about taking it prophylactic.

could you direct us or is there a link to the cfs and zithro study? i would love to so it to one of my drs. I am 50 too and been dealing with this for quite a while . does the study detail the protocol? you know with this brain fog it is hard to keep up with everything ( I ) we need to do. this for the help with this.

 

[pattismith]

@cb2
yes you can find it on PR :

http://forums.phoenixrising.me/inde...drome-cfs-an-analysis-of-clinical-data.39858/

http://forums.phoenixrising.me/index.php?threads/erithromycin-azithromycin-clarithromycin.6681/

and here some of the side effects that we should pay attention to when taking it (hyperlactatemia is not quoted, but I believe that CFS patients are at risk for it, as I was)

http://forums.phoenixrising.me/inde...or-those-low-in-potassium-or-magnesium.22306/

 

[cb2]

thank you @pattismith

 

[JAH]

I've known Dr.

The Stanford CFS Clinic is a sham, I hate to say. Montoya talks a smarmy sales pitch about the CFS Clinic treating patients using a "shared provider" concept but that sales pitch is really a cover-up for him being out of the clinic doing research and on sabbaticals so that he can shift responsibility for healthcare for this serious illness to his inexperienced and unqualified team.
It's unethical.

Sorry to put it so bluntly.

I couldn't disagree more. The creation of the CFS clinics at Stanford is one of the most significant milestones in the history of CFS. You can't overstate the imprimatur of legitimacy that Stanford gives. If anyone thinks CFS is a BS disease, you can throw Stanford in their face. If there is another CFS clinic in a major U.S. teaching hospital- like the Mayo, Cleveland, the Brigham- let me know.

Dr. Montoya has conducted research, published, raised money, gotten other docs interested in CFS (like Kogelnik), gotten Stanford docs to collaborate in research, gotten other specialists at Stanford to treat pwc's.

And he believed us.

He is also an employee at Stanford. I have no idea how much support he gets for the clinic, or how many hours he can spend there. I do know that he has had to fight for everything he has gotten at Stanford. He shouldn't have to fight here.

JAH


I understand the limitations and frustrations of Stanford very well, and don't necessarily recommend it myself! I'm nut questioning anyone's negative experiences.

 

[msf]

I have never heard of clarithromycin (biaxin) being used to treat gut dysbiosis, whereas it is used to treat Lyme. People criticise KDM for prescribing antibiotics for dybiosis/SIBO, but he actually tests the gut to see the nature of the dysbiosis, and then treats accordingly. I do not want to make this about KDM, I´m only pointing out that some people are very critical of his approach to dybiosis/SIBO despite it seeming to be more evidence-based than Dr. Bonilla´s approach. Of course, the clarithromycin might actually be for a suspected Lyme infection, but if it is, why didn´t they tell you that? I personally would contact that clinic and ask what specifically the clarithromycin is for, and then make a decision as to whether you want to follow this doctor´s treatment plan.

 

[IreneF]

Dr. Montoya does a lot of other things besides the CFS clinic at Stanford. One morning a week is better than nothing at all. They've had long-term problems because the staff is overextended.

I've made progress with Valcyte but it has taken a long time, and I have difficulty getting my insurance to pay for it.

Bonilla is a vast improvement over Norris. There is really not a lot to understand about CFS/ME because there has been so little research, the majority of the research is underpowered, and the findings don't add up to anything resembling a coherent disease process. I think he is overselling cucurmin, however, and I'm not taking it.

 

[msf]

Hmm, it seems that the attitudes of some people to antibiotics being prescribed based on a clinical diagnosis depends to a large degree on who the doctor prescribing them is, even when they don´t have any first-hand knowledge of that doctor.