Doctor request lists questions?

[mouse]

Doctor request lists

I have requested two lists so far. One only has two doctors on it. I would like to request the “experienced” doctor list and a list from one other state? I have friends and family who can assist me in this additional state. What do I need to do? My symptoms are vague but increasing. My diagnosis is “undifferentiated connective tissue” but this could change. Does my diagnosis effect who appears on the list? My diagnosis when my symptoms are more specific may change. This is all new to me. I open to any advice anyone has to offer….

Female, 59 years old. My issues began with a drug reaction.
ANA 1:32 Homogeneous, Nuclear Speckled
Rheumatologist/Osteopenia, osteoarthritis, UCTD,
Gastroenterologist/little gastritis,11/20,
Cardiologist/heart/bradycardia,7-20 had a little tachycardia
Benign limp node removed 4 years ago
My last panel of antibody blood tests taken in 8/20 were all negative accept ana.
Taking Vitamin D and magnesium. My doctor has given me B12 to take and wants me to take hormones. Getting physical therapy soon.

[Luck20]

There are limited drs for any state. Best dr, would be who you prefer to work with. Many of the drs are Functional Medicine Drs, or Integrated care drs. Also, do searches for lyme literate drs in your state. There are limited options and all the drs that may be of help, might not be on the list. You could also look at statewide lyme support groups and see what drs they use. Your basically looking for someone who is willing to help you find the root cause and isn’t afraid to perscribe the right combo of antibiotics to get better. There is a ‘Doctors Packet’ on this website that can be given or shown to any dr.

On Amazon, there are a few books for sale with positive stories to help you feel supported and inspired to search out the help you need. The titles are listed on this website.

I originally sought out The Road Back 1.5 years ago. I believe the dr search is automated and you just add in the states your looking for. Hang in there. It’s worth the time and trouble to search out these treatments! It just takes time and the sooner you can get started the better. I’m much better off than when I first started. I’m not a 100% better, but long term, I expect a full remission. I can see myself getting better everyday. My latest success is my labs returning to normal range. Just one year ago, they were so high it was scary and I was going downhill fast. Now, I’m getting my life back. 🙂

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]

I don’t think the diagnosis matters tremendously. The treatment should be pretty much the same, though I read they take a stronger approach with scleroderma vs RA sometimes.

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

[Maz]

Hi mouse,

I’ll send you the “most experienced” doc list and, if you reply to my private message (PM) and let me know which other state you’d like, I’ll send that, as well.

You’ll receive an automated email that you can click on to receive your PM or, when you check back here on the forum, just click on where it says “Hello, mouse” in one corner of this page and hover your cursor there and (in the pop-up menu) select “inbox,” you’ll find your PM box.

[mouse]

Thank you so much for your responses…So good to know somebody is there….

Female, 59 years old. My issues began with a drug reaction.
ANA 1:32 Homogeneous, Nuclear Speckled
Rheumatologist/Osteopenia, osteoarthritis, UCTD,
Gastroenterologist/little gastritis,11/20,
Cardiologist/heart/bradycardia,7-20 had a little tachycardia
Benign limp node removed 4 years ago
My last panel of antibody blood tests taken in 8/20 were all negative accept ana.
Taking Vitamin D and magnesium. My doctor has given me B12 to take and wants me to take hormones. Getting physical therapy soon.

[mouse]

When you approached the ‘Lyme Disease” doctor what do you tell them that’s gets results?

Female, 59 years old. My issues began with a drug reaction.
ANA 1:32 Homogeneous, Nuclear Speckled
Rheumatologist/Osteopenia, osteoarthritis, UCTD,
Gastroenterologist/little gastritis,11/20,
Cardiologist/heart/bradycardia,7-20 had a little tachycardia
Benign limp node removed 4 years ago
My last panel of antibody blood tests taken in 8/20 were all negative accept ana.
Taking Vitamin D and magnesium. My doctor has given me B12 to take and wants me to take hormones. Getting physical therapy soon.

[mouse]

Would a Lyme doctor have their own protocol for treating infections? Would I go to Lyme doctor to find infections, get them treated and then to AP doctor for further treatment if necessary?

Female, 59 years old. My issues began with a drug reaction.
ANA 1:32 Homogeneous, Nuclear Speckled
Rheumatologist/Osteopenia, osteoarthritis, UCTD,
Gastroenterologist/little gastritis,11/20,
Cardiologist/heart/bradycardia,7-20 had a little tachycardia
Benign limp node removed 4 years ago
My last panel of antibody blood tests taken in 8/20 were all negative accept ana.
Taking Vitamin D and magnesium. My doctor has given me B12 to take and wants me to take hormones. Getting physical therapy soon.

[Luck20]

Yes, I would think a lyme dr is doing both but some are more experienced with AP than others. Frankly, I think theres a huge overlap between the two. Every dr has there own way of doing things and it’s best to find one your comfortable with long term.

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

[Spiffy1]

Luck20, you are an inspiration. I am so happy for you and your normal labs. I just love these success stories. I will always have my RA factor but as long as I feel okay with it we can go through life together just fine. Congrats!

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[Luck20]

Thanks Spiffy1!

I’m thrilled about the labs. I feel like having a well functioning liver and no more muscle breakdown will help me finish healing. I took a big risk combining so many meds last year, but at the rate I was going, I thought I’d be in a wheelchair and need help just getting dressed by the end of last year.

Thank God everything has improved and there are so many resources and people willing to help online.:)

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

[Author]

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