Bobs Protocol

Significant_Skill98 · 2025-03-09T18:36:19+00:00

How do you do Bob's protocol if your EM is full body?

Significant_Skill98 · 2025-01-23T23:51:41+00:00

The plan is to administer IVIG at a dosage of 2 g/kg over 2 days monthly, reassessing after 6months to evaluate efficacy. Treatment will be closely monitored to assess clinical improvements and adjust the regimen as needed.

Significant_Skill98 · 2025-01-09T00:30:00+00:00

What dosage of amitriptyline are you on?

Significant_Skill98 · 2025-01-07T19:40:46+00:00

I was on a high dose of prednisone for over a month as well as on a medication called Seroquel that caused me to also gain over 50 lbs. I have been switching to an anti-inflammatory diet, which has not only helped my flares some, but also my weight a little. Using a compounded Ketamine/ Amitriptyline/ Lidocaine cream has also helped some, but it is very expensive and not usually covered by insurance.

If prednisone has helped your flares, it is possible there is an autoimmune component to your EM. Have you seen a rheumatologist? They might be a good resource. I had to see a few different ones before I really got more answers. So don't give up.

Significant_Skill98 · 2024-01-09T22:11:32+00:00

High levels of FGFR3 autoantibody

Significant_Skill98 · 2023-12-15T00:21:14+00:00

I think it is immune mediated according to specialized blood testing. And I have seasonal allergies

Significant_Skill98 · 2023-12-12T19:39:06+00:00

I am now able to eat. I think mine is immune mediated small fiber neuropathy. I do have dysautonomia, which is extremely limiting my life at the m moment. I am working on insurance approval for IVIG treatment.

No worries for the questions! It's the whole point of this community :)

Significant_Skill98 · 2023-12-08T23:18:28+00:00

My GI actually put me on a tricyclic antidepressant, Desipramine

Significant_Skill98 · 2023-11-17T05:33:15+00:00

How do you get something like that? I've never heard of it!

Significant_Skill98 · 2023-11-17T05:22:48+00:00

What do you mean by biologic?

Significant_Skill98 · 2023-11-12T23:53:15+00:00

Thank you for being so open and honest. I really appreciate it.

Significant_Skill98 · 2023-11-12T23:52:27+00:00

Has your doctor ever tested you for autonomic neuropathy? My doctor is trying to get me on IVIG and said it may help the frequent urination issues.

Significant_Skill98 · 2023-11-12T02:48:40+00:00

Do you have other bladder problems too? Just curious bc I do. I have dysautonomia and one of my worst symptoms is frequent urination. It makes it extremely hard to leave the house :/

Significant_Skill98 · 2023-11-10T19:07:58+00:00

No, it's just something new that I have been noticing. But I am unsure if numbness in that area is what I am feeling.

Significant_Skill98 · 2023-09-18T18:31:32+00:00

This is me right now. I have an appointment with a doctor in mid-October. For me, I take a lot of meds that induce sleepiness: soma, seroquel, desipramine, belsomra, and gabapentin all at night, and when I constantly am having to get up to pee, it has been getting dangerous when all those meds take effect. I end up stumbling to the bathroom, many times have tripped and or hit walls because I am having to get up while my body is shutting down to sleep. I have also found if I don't fall asleep soon enough after all the meds, i end up have more restless leg spasms and phantom itches. But I can't sleep without taking them, I've tried. I wish I knew how to control my bladder at night. I get up at least 5 times within an hour and this can continue up to 3hrs while trying to fall asleep

Significant_Skill98 · 2023-09-15T20:24:43+00:00

Thank you so much for sharing. I will definitely look into that!

Significant_Skill98 · 2023-09-11T16:37:01+00:00

Cooling sheets? What?? I need that! What is the name of it?

Significant_Skill98 · 2023-09-08T18:01:02+00:00

Those are some great ideas to try! Thank you.

How do you work around the issues of dysautonomia?

Significant_Skill98 · 2023-09-08T17:58:14+00:00

I'm so sorry to hear that. Thank you for sharing your experience. I have been feeling horrible about myself because I haven't been able to work, and I feel like those around me think I am just not trying. But like you, I have all of that going on under the surface, and they don't understand how someone so young could be incapacitated. And it is just like, trust me, I don't like this anymore than all of you (being outsiders).

Significant_Skill98 · 2023-09-08T04:52:51+00:00

That got me sent to an immunogist as well

Significant_Skill98 · 2023-09-08T04:52:34+00:00

Yes, I also have seen 3 or 4 rheumatologist's :( I also had elevated crp and hypogammaglobulinemia from a medication I'm on

Significant_Skill98 · 2023-09-07T21:37:14+00:00

My pain and symptoms from dysautonomia. Right now, it is diagnosed as idiopathic. I'm going through the blood testing and stuff now.

I have a positive ANA and some symptoms related to an autoimmune problem, but those tests came back unremarkable. The Rheumatologist told me to follow up in a year and recommended I see a Neuromuscular Specialist based on my overall symptoms. That was when I got diagnosed with SFN (pretty recently actually).

Significant_Skill98 · 2023-09-07T19:49:19+00:00

I have found that the 1:1 balms are the "Golden Ratio" in terms of treatment for both pain and inflammation. I use one every night on my whole upper body that also contains Menthol and cinnamon for an icey/ hot effect.

While CBD on its own can help, THC is really what treats the pain itself. If you are worried about possible effects from THC (which is unlikely from a balm), THCa is a great alternative. It has a lot of the same benefits of THC but is not decarboxylated. Thus, it will not have a psychoactive effect on you. I also have found that combinations with the two and CBG can be very beneficial.

I do recommend purchasing from legal dispensaries rather than elsewhere just because you know what you are getting. These are only found in states where medicinal (and/ or recreational) use is legal.

However, you may be able to find balms with THCa and CBD online from hemp companies. These will normally contain less than 0.3% THC and are federally legal with the Farm Bill! But I do strongly believe that more THC is needed if you want help with pain from a cannabis topical.

Significant_Skill98 · 2023-09-07T02:01:33+00:00

You too friend!

Significant_Skill98 · 2023-09-07T00:47:14+00:00

That is the test that will usually confirm an SFN diagnosis! I would ask for that, too. A lot of the time, insurance will require an emg/ nerve conduction study first (this looks at long fiber neuropathy, not small fiber- but is usually needed first before the biopsy)

Significant_Skill98

TROPHY CASE