Autoimmune issues: Which doctor? Book recommendations? HELLP syndrome

[GoVanGogh]

. This is a spin off on my swollen parotid gland. (Titled lymph node because that is what I first thought it was.) 

 

Which doctors would one see for various autoimmune issues? Is there one type of specialist that can take care of multiple autoimmune issues? Experience with alternative doctors or therapies? (I want to see traditional specialists when needed, but I am also trying to heal my body through diet and lifestyle.) 
 

Also, any book recommendations? 
 

I have Hashimoto’s thyroid and celiac. I have chronic Epstein Barr issues. Not autoimmune but I was diagnosed with young onset Parkinson’s three-four years ago. 
 

With this latest health issue, lupus and Sjogren’s were again discussed. Sjogren’s, in particular, seems to be - complicated? My dentist has mentioned it because of chronic dry mouth. My eye Dr has mentioned it because of dry eyes. ENT has now mentioned it. But rheumatologist brushed it off since my last labs were okay. 
 

With the Parkinson’s diagnosis, DH and I talked about going to the Mayo Clinic because every few years my body tries to kill me. It has gotten much worse since I survived a HELLP syndrome seizure. I was sent to a liver specialist afterward for additional testing but that was two decades ago and DH and I don’t recall anything beyond that. (DS was premature with hemiplegia, so our memories about my health are hazy.) DH and I decided we would go to our region’s leading medical facility instead of the Mayo. The first appointment was canceled the day before the appointment due to Covid lockdown. After the lockdown was lifted, we scheduled again but it was months out due to their backlog. As we were walking out the door for that appointment, they called to apologize because they had erroneously scheduled the doctor with the wrong type of neurologist. At that point we gave up trying with them, but now we are rethinking either trying them again or maybe going to the Mayo. 
 

Part of me thinks I just need to focus on healing my body through diet/lifestyle and through therapy. 
 

edited to add: I mention the HELLP because my labs are consistently running extremely high in ferritin. I have asked if the liver issues from HELLP could still be affecting my liver, leading to the Parkinson’s, but every doctor says they don’t know enough about HELLP to weigh in. 
 

WWYD?

Edited March 31, 2023 by GoVanGogh

[prairiewindmomma]

edited out personal stuff

In your case:

1. Bring on hematology to sort out the ferritin issue. High ferritin is usually associated with rheumatoid disease and liver damage, and your rheumy should be on top of it. It’s surprising they aren’t, so bring someone else in who will sort that out. 
 

2. sero-negative stuff is real. Super common. Super annoying. They should be putting you on a DMARd if you have a high cr-p or sed rate and meet enough diagnostic criteria and just deal with it. Sjogren’s is the hardest to get pinned down on. If you don’t meet the diagnostic criteria, you can always get the Sicca label instead….which still qualifies you for DMARDs.

Honestly, it sounds like you have a not-wonderful rheumatologist. They are definitely a mixed bag, and I would consider switching if I didn’t get definitive answers as to why some decisions were being made.

Feel free to pm me. 

Edited April 1, 2023 by prairiewindmomma

[Pawz4me]

10 minutes ago, prairiewindmomma said:

 

Honestly, it sounds like you have a not-wonderful rheumatologist. They are definitely a mixed bag, and I would consider switching if I didn’t get definitive answers as to why some decisions were being made.

 

I agree. With two doctors and a dentist having mentioned the possibility of Sjogren's I think any rheumy should take it seriously.

[Katy]

I’d also recommend a different rheumatologist. I’ve had great ones and condescending jerks. 

IF you’re open to an extremely strict diet, check out Dr Brooke Goldner. She has a Facebook group called Smoothie Shred where you can learn her programs for free. She was given 6 months to live at age 16 due to lupus. She went through a few years of experimental chemotherapy and was in remission when she met her future husband, an LA trainer who focused on using cellular metabolism principles to get people in good shape quickly. When she combined his principles with her own vegetarian ones when trying to get in shape for her wedding, she got negative blood tests for lupus. With years of experimenting she developed a program to help other people reverse diseases too. It’s mostly raw vegan and high in vegan Omega 3 fats. It’s odd, it’s strict, and the foods can be a bit expensive, but it can definitely improve odd problems, especially autoimmune problems related to inflammation. And personally when I stick to it I feel much happier too. 

[Selkie]

I was going to mention Dr. Brooke Goldner as well. She is the instructor for the autoimmune section of the Cornell program that I took, and is just a phenomenal human being. Her hypernourishment protocol has helped thousands of people with autoimmune disease. She works with patients one on one or in groups, and also does a live Q & A every Wednesday on Facebook, Instagram, and YouTube.

[GoVanGogh]

Re: Rheumatologist Until this episode, I really liked her. I was seeing an absolute jerk, who I later found out is part of a large rheumatology network and they absolutely won’t let you switch doctors. When I found the rheumatologist I have now been seeing for the past three years, I absolutely loved her. Now I am not at all happy with her. I have a routine appt coming up soon so will see how that goes, but am going to start looking around for a new one. (Ugh. I need a new gyn, too, and just hate finding new doctors!) 

Re: Dr Goldner Oh! I bought one of her books just before I got sick. I haven’t even cracked it open yet. Off to find it. (Too many stacks of books!) 
I am already following a nutrition plan that some people might find extreme. I try to get about 1/2 of my food raw vegan, but have been thinking about adding in more raw. 

[BeachGal]

If I were you, besides finding doctors you like and trust, I’d try to follow the research that pertains to your specific health problems. Researchers investigate the theories whereas most MDs must adhere to the standards of care. The exception being physician researchers. Researchers might not be able to treat you but occasionally their theories can be implemented by an affected individual. For example, what if cold shock proteins were being investigated as a treatment and showed some promise? An individual could try a series of cold baths if not too dangerous.

Rhonda Patrick, whose father has Parkinson's, has posted about new research, some of which looks promising such as a particular growth factor called GDNF. I would follow her, become a member, listen to any pertinent interviews she does with other researchers as well as tune in to her live chat sessions and ask her questions because she actually does try to help people. In addition, the comment sections of her social media can have interesting ideas from MDs, researchers, scientists and others that could help you. I have actually messaged some of her commenters privately for advice and have received replies.

Whatever you decide, I hope you are able to find a better team of people who can help you more.

ETA  For Parkinson’s you could try doing a search using photobiomodulation (pbm) and Parkinson’s. I have come across recent articles and studies when reading about pbm for other issues. Pbm is light therapy which can have an effect on mitochondria.

Edited April 1, 2023 by BeachGal

[Ellie]

So far, my only autoimmune disease is Hashi's, and I haven't found a good medical practitioner to replace the one who moved away two years ago. I can't imagine trying to figure out multiples. You have my great sympathy; wish I had more actual advice.

[Pawz4me]

Another possibility, if you want to come at things from a slightly different direction, might be to look for a very good internal medicine doctor. They're like pediatricians for kids in that they specialize in primary care for adults. They're supposedly very good at managing patients with complex medical needs and helping them sort things out. One would almost certainly refer you out to other specialists, but would (should) be kind of an overseer of the big picture.

[footballmom]

8 hours ago, Pawz4me said:

Another possibility, if you want to come at things from a slightly different direction, might be to look for a very good internal medicine doctor. They're like pediatricians for kids in that they specialize in primary care for adults. They're supposedly very good at managing patients with complex medical needs and helping them sort things out. One would almost certainly refer you out to other specialists, but would (should) be kind of an overseer of the big picture.

My DH sees a phenomenal internal medicine doctor for his multi-layered health issues including autoimmune stuff. She is a source of truth and trust for DH that he hasn’t gotten in any other specialist - and she does recommend other specialists as needed.

[GoVanGogh]

Re: Dr Goldner. I pulled out her book last night. I bought the autoimmune one, which - doing a light skim through - says “For further information, read the lupus book…” I had a lot of kindle credits, so spent them on the lupus book, then stayed up late and read the entire book. It is really good. I am doing quite a bit of what she recommends, though I don’t get anywhere near as much omega 3/flax or drink near enough water. Thanks for suggesting her books, etc. It makes me feel like I am on the right track. I am looking forward to reading her autoimmune book, as it has a number of success stories.

Re: internist. Oh! I have a great friend who sees an internist. I will ask her who she sees and look in to that. 
 

 

[GoVanGogh]

21 hours ago, BeachGal said:

If I were you, besides finding doctors you like and trust, I’d try to follow the research that pertains to your specific health problems. Researchers investigate the theories whereas most MDs must adhere to the standards of care. The exception being physician researchers. Researchers might not be able to treat you but occasionally their theories can be implemented by an affected individual. For example, what if cold shock proteins were being investigated as a treatment and showed some promise? An individual could try a series of cold baths if not too dangerous.

Rhonda Patrick, whose father has Parkinson's, has posted about new research, some of which looks promising such as a particular growth factor called GDNF. I would follow her, become a member, listen to any pertinent interviews she does with other researchers as well as tune in to her live chat sessions and ask her questions because she actually does try to help people. In addition, the comment sections of her social media can have interesting ideas from MDs, researchers, scientists and others that could help you. I have actually messaged some of her commenters privately for advice and have received replies.

Whatever you decide, I hope you are able to find a better team of people who can help you more.

ETA  For Parkinson’s you could try doing a search using photobiomodulation (pbm) and Parkinson’s. I have come across recent articles and studies when reading about pbm for other issues. Pbm is light therapy which can have an effect on mitochondria.

Thank you so much for this info. I am vaguely familiar with Rhonda Patrick. Just pulled up her website, lots of info there. I have been interested in the pbm, but haven’t tried it, just done some light researching on it.

[BeachGal]

In this small study, they used two different VieLight devices and one laser device. The first VieLight device was placed on the head targeting specific areas of the brain. The second VieLight device was placed in the nose targeting the bottom of the brain above the nasal cavity. The third device was a laser which targeted areas of the neck and abdomen.

You can buy the VieLight devices directly from the company and I’ve also seen them sold used. Not sure if the intranasal part can be easily switched out, though. VieLight devices are pricey but are being used in research.

https://www.vielight.com/brain-photobiomodulation-devices/

A regular old red and near infrared light device might be effective, too. Hooga makes sturdy devices. They’re in Wisconsin. I have this one. It’s less than $300 but you might be able to find a coupon code online. They usually have good deals on Black Friday and Amazon Days or whatever it’s called.

https://hoogahealth.com/products/hgpro300

If you were to try this, you could place it close to the parts targeted in the study. And your pituitary gland. Maybe 5-10” each area, twice a day about 12 hours apart or so if you can manage that. Turn on the red and near infrared buttons so you’re using both. The near infrared light can penetrate the skull and then travel around the curvy channels of your brain so it can go pretty deep. The light is not harmful; it’s part of the sun’s spectrum (but is not UV light). Red and near infrared light is actually very beneficial. Just keep the total time to less than 30” per day per area because there is a sweet spot.

If you are interested in reading more, the person who has done the most research on PBM is Michael Hamblin.

[gardenmom5]

I would choose someone who does functional medicine.

[GoVanGogh]

8 hours ago, BeachGal said:

In this small study, they used two different VieLight devices and one laser device. The first VieLight device was placed on the head targeting specific areas of the brain. The second VieLight device was placed in the nose targeting the bottom of the brain above the nasal cavity. The third device was a laser which targeted areas of the neck and abdomen.

You can buy the VieLight devices directly from the company and I’ve also seen them sold used. Not sure if the intranasal part can be easily switched out, though. VieLight devices are pricey but are being used in research.

https://www.vielight.com/brain-photobiomodulation-devices/

A regular old red and near infrared light device might be effective, too. Hooga makes sturdy devices. They’re in Wisconsin. I have this one. It’s less than $300 but you might be able to find a coupon code online. They usually have good deals on Black Friday and Amazon Days or whatever it’s called.

https://hoogahealth.com/products/hgpro300

If you were to try this, you could place it close to the parts targeted in the study. And your pituitary gland. Maybe 5-10” each area, twice a day about 12 hours apart or so if you can manage that. Turn on the red and near infrared buttons so you’re using both. The near infrared light can penetrate the skull and then travel around the curvy channels of your brain so it can go pretty deep. The light is not harmful; it’s part of the sun’s spectrum (but is not UV light). Red and near infrared light is actually very beneficial. Just keep the total time to less than 30” per day per area because there is a sweet spot.

If you are interested in reading more, the person who has done the most research on PBM is Michael Hamblin.

Oh, thank you so much for that information. Very useful! 

6 hours ago, gardenmom5 said:

I would choose someone who does functional medicine.

I have looked before at functional med but our insurance doesn’t cover it and most places charge several thousand. That said, I took a backstreet home yesterday and noticed a functional med place and it brought that back to my mind, thinking I needed to look in to it again. I want help “connecting the dots” or looking at the bigger picture.