Dr. F. In CA

[aifkovits]

Hi, I have been in the undiagnosed autoimmune phase for the past year, many symptoms mimicking SD at the moment. I have been considering flying out to Riverside to meet Dr. F. to discuss AP. I was curious if anyone on here had specifically worked with him for SD or overlap conditions and how that went. For example, for those struggling with getting a diagnosis, if they found answers or a treatment that worked for them. Do you know if Dr. F. does capillaroscopy in his office?

Thanks!

 

RBFV Note: edited to remove AP doc’s surname as per forum user guidelines. Thank you for your understanding. 

[Cary]

I don’t have SD but Dr. F is the one who diagnosed my ReA. His in house lab is one of the best in the world. Seems like so many doctors ignore symptoms in the face of negative labs yet the establishment says roughly 20% of patients will be seronegative. Dr.F is not in this group. I went through 1 terrible primary care and 3 caring but puzzled Rheums before Dr.F. If you have means I recommend a visit with all my heart.

[Pinkmoth]

I visited Dr F at the end of July of this year.
he’s a really nice guy and seems like a good doctor.
I am in the early stages of some sort of mixed rheumatic disease with I am CERTAIN a scleroderma overlap (the RA part is totally under control with minocycline). so we may be in a similar boat.

my AnA has always been negative (multiple checks since I first got sick 2 years ago) until Dr Franco’s test, which showed that my ANA just went positive at a very low titer.

he seems very thorough. but he also looked at my skin and did not think it looked like scleroderma and in this like all the other docs I’ve seen we will disagree.

he says it doesn’t look like scleroderma, but then doesn’t explain:

-hair loss on my legs
-brown patches on shins
-thickening of skin most intensely on index fingers and gradiating to less extreme toward pinky
-band of tight skin that appeared over top lip
-hand/finger swelling at night and also in response to food
-esophageal spasms
-malabsorption
-dark tan complexion to skin. worst on hands and around waist
-patches of dark abnormal itchy plaques on on abdomen (looks exactly like limited SD plaques)
-shiny skin up to first joint on fingers
-tight skin on palms
etc etc etc I could go on and on

my point is that I am experiencing things that I see written about by many people who have a scleroderma diagnosis. but no docs are putting this picture together to give a diagnosis. I thought Dr F would be the one to do it but even he isn’t seeing it.

the PA who works under him and who you will see on the first day of you make a trip out and do the 2 day appointment is really really good though. she actually saw and acknowledged all the things I pointed out. she is the only doc I’ve ever seen who looked at me and said my skin was abnormal and something strange is afoot. but day 2 after I saw Dr F, his PAs assessment of me was kindof forgotten.

his practice treats you very well and they are VERY thorough about their blood work there. they will run all sorts of tests that no one else will.

in short even though I didn’t get the outcome I wanted, I do think his practice is good and worth the trip. and you might have different markers than me that could get you a diagnosis. I know if my symotoms advance to the point where my SD is blindingly obvious, that at least I’m an established patient with Dr F because that’s where I’d want to be treated.

best of luck. I know how frustrating it is to get help.

Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidin

[Luck20]

Hi Pinkmoth,

I understand it’s frustrating when drs don’t see what your showing them or take symptoms lightly but it might be a blessing in disguise. Words have power. As soon as the first dr uttered the word scleroderma, I got worse and worse. Then I heard it again…

The good news is the AP treatment for RA/Sclero/MCTD is roughly the same, just more aggressive with sclero. So in the end, getting well is much more critical than an exact diagnosis. (Unless it prevents you from getting a certain med covered)

I’ve been reading about a function medicine practice called Hansa, now its Biologix Center. They sound like they have a good record of getting people better and they don’t focus on diagnosis. They think its counterproductive.

I’ve read on message boards that it appears people with these strange rheumatic overlaps seem to get better more often than the people with clear cut diagnosis. This is antidotal of course, but I choose to believe it because believing it means I have better odds of getting better too!

Hang in there. 🙂

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Luck20]

Also, Pinkmoth, everyday I tell myself that I don’t really have this. It’s a mistake. I just have something unusual that looks like it.

I tell myself that “I’m not like those other people. I’m different. I’m making a full recovery. This is just a bump in the road.”

Sure, if I said it to my rheumatologist, he’d probably think I was nuts, so I don’t. I tell it to ME everyday.

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[aifkovits]

Thanks, everyone, for your replies. I appreciate you all sharing your stories with me–and I wish you all the best in health.

I’ve been scanning the Road Back thread the past couple months and it seems to me that the patient experience with Dr. F is unparalleled. I am glad to hear that sentiment was echoed here.

I also fear that I won’t be diagnosed (and at this point all of these doc visits with no diagnosis adds up from an expense perspective) for a while and meanwhile my physical symptoms continue to get worse. Do you think Dr. F would begin a treatment plan even if the disease isn’t totally obvious/remains undifferentiated?

Thank you.

[Lynne G.SD]

Is there any chance that you might have Lyme as it can totolly mimis or cause SD.That happened to me.You can check your nailfold capillaries with a strong magnifying glass.Just rub a little oil on the skin first.If it is Lyme I do not think Dr. F. treats it.

[Luck20]

Hi Lynne, what do you check for with the nailfold capillaries to tell if its lyme or scleroderma? Are you refering to the cuticle or the skin just beyond it?

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Lynne G.SD]

Hi Luck;
If you do not have Lyme you probably will not have broken capillaries,the same for Raynaud’s.Here is a good explanation.

https://www.the-rheumatologist.org/article/rheumatologists-find-nailfold-capillaroscopy-increasingly-useful-diagnostic-tool/?singlepage=1&theme=print-friendly

[Luck20]

Thanks. I know my rheum looked at them initially but he didnt say much…

Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.

Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish

[Jae]

Hi Lynne,
I have Raynaud’s & broken capillaries. Does that mean I also have Lyme? My Lyme test results are indeterminate. Thanks!

2000 dx’d Systemic Scleroderma & Raynaud’s
9/2016 dx’d Polymyalgia Rheumatica (PMR) (maybe RA?)
12/2018 stopped Minocycline (100 mgs) (skin turning blue)
Lyme disease testing – indeterminate | Slow progression memory loss
Prednisone: 3 mgs | Azithromycin: 250 mgs | Sildenafil | Synthroid

[Author]

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