Conflicting Treatment Thoughts from Two of My Doctors

Lately, I have felt as bad as I have felt in 12-13 years, and struggle to function each day. Major stomach problems, legs feel shaky and weak at times but I'm still able to do same exercises and don't feel loss of strength. It is more like a feeling of weakness, but I also get dizzy when it hits.

Have tested positive for tick born relapsing fever and rickesetta, so my PCP, is is fairly Lyme literate, wants me to treat that. The rheumotologist wants me to start on real low-dose prednisone to treat the Sjogrens that, she feels, is causing neuropathy. I don't question that either. No doubt about the Sjogrens. I have tried hydochloroquine, but it gives me tremendous migraines and my mood changes.

At this point, I would do most anything to feel better. As we have most all experienced, life is at a point of being unbearable. This all became much worse after the neurologist upped my IVIG treatment from once a week to three straight days with more IVIG at a higher rate. That was two weeks ago and still struggling.

Don't think I can do the prednisone at still try to treat infections. Which way to go?

Hi RW, I feel for you that you are between a rock and a hard place with your recommended treatments for each separate condition. what is a patient to do when one prescribed? Treatment is contraindicated for the other? Obviously you are having reservations about the prednisone considering it generally is not advisable to take steroids. When suffering from Lyme disease.

I am a patient who is very sensitive to any treatment. I tend to suffer from very noticeable die off reactions. So, of course, I am relating my experience to yours, and I am assuming that your recent uptick in symptoms may in fact be directly related to the increase in IV, I G treatment frequency.

I realize that we really don’t know how the tickborne disease is affecting your sock Rands and vice versa. So if this point it probably is prudent to treat both. Is it possible to try a very low-dose of prednisone to see how you do? Or another option is to reduce the IV I G treatments to where you are at a tolerable response and then try the prednisone.

I hope you feel better soon.

Thank you for that running wild. In my opinion, I would not be starting a prednisone treatment for a gut issue, of which the cause hasn't fully be established yet.

From your post I'm getting that autonomic neuropathy could in theory cause gut problems, I did not know that.

However, there are also other things that can cause gut issues, things of which the treatments are less harmful towards the infections (meaning treatments without prednisone). Like a stomach bug/parasite etc.

It's really a lot more common than people think. I had cryptosporidium myself.

What about running a stool test first? It could maybe detect some infection in your gut. Best case scenario would be that it's a simple bug that can be easily treated!

Stay strong my friend.

By the way, it doesn't even have to be a fancy stool test. You can just ask your doctor for the default testing they have. Let's see what that finds first, it would be cheaper and (hopefully) insurance covered that way. That's how they found my cryptosporidium.

If that doesn't work, you could always try the more fancy testing afterwards.

Also, I agree with RainyCloud's suggestion about trying to get any free or low-cost parasite testing through insurance first, if that's an option.

Otherwise, I'm aware of labs like Diagnostic Solutions Laboratory that offer the GI-MAP (GI Microbial Assay Plus) and the Pathogens Panel (stool):

https://www.diagnosticsolutionslab.com/tests

There's also ParaWellness Research:

https://parawellnessresearch.com

A couple of members have tested through them, though I'm not sure how helpful it was. My impression is parasite testing in general is tricky, given how many possible invaders there are, the limited number of tests available to find them, and either not capturing or spotting them in the stool collected.

Still, something may be better than nothing. Or, I guess one could always try a few different parasite protocols and hope that casting a wide net of overlapping supplements or medication protocols might find and eliminate unwelcome guests. But, that might also be hard on sensitive guts.

The following lady has some interesting ideas:

http://debugyourhealth.com/parasites-in-humans

I'm skeptical of some of the modalities employed, but she reported success and that's all that ultimately matters. Things like homeopathy and energy testing, thus far, haven't worked for me. But, others have had success.

running wild said...
Lately, I have felt as bad as I have felt in 12-13 years, and struggle to function each day. Major stomach problems, legs feel shaky and weak at times but I'm still able to do same exercises and don't feel loss of strength. It is more like a feeling of weakness, but I also get dizzy when it hits.

Have tested positive for tick born relapsing fever and rickesetta, so my PCP, is is fairly Lyme literate, wants me to treat that. The rheumotologist wants me to start on real low-dose prednisone to treat the Sjogrens that, she feels, is causing neuropathy. I don't question that either. No doubt about the Sjogrens. I have tried hydochloroquine, but it gives me tremendous migraines and my mood changes.

At this point, I would do most anything to feel better. As we have most all experienced, life is at a point of being unbearable. This all became much worse after the neurologist upped my IVIG treatment from once a week to three straight days with more IVIG at a higher rate. That was two weeks ago and still struggling.

Don't think I can do the prednisone at still try to treat infections. Which way to go?

I just wanted to say that I’m so sorry you have not been able to make progress with your treatments.
Hoping you see some improvement in the near future.

Again, thanks for your ideas and responses. This may be brief but want to go through what was mentioned.
The stool test is something that is really a good idea. I just get impatient on how long it takes to have it set up and get results back. At a point where each day is tough to take, and for whatever reason things get worse in the afternoon with stomach pain, weak legs, light headed and somewhat dizzy. Exercise really seems to set off the dizziness.

And the gut-brain connection is a no doubter in my mind. Always feel worse in many ways when the gut goes. Fell weak, more tired, depressed, etc... Something in this last series of IVIG seems timed to it, though I can't say for sure. I should have been writing in journal each day as that helps separate what may have caused what.

Whether she likes it or not, I have an appointment with the neurologist I see on Wednesday and am going to push for autonomic neuropathy testing. There is so much out there about autonomic neuropathy but only a few wasy to test are usually mentioned - blood pressure tests standing and sitting, looking for drop in BP, sweat test.... There is so much more to it than that. My thinking is she is not real well versed at autonomic issues so doesn't know what to do or where to send me.

Also focusing on vagus nerve, as Dude mentioned. So between Rainy and Garzie mentioning stool and possibility of IVIG playing a part, that needs to be checked also. If I eat anything, all gets worse. No doubt. GI doctor has me scheduled for a gastric emptying test, which seems like a good idea. Checks how slow food may be moving out of stomach. Also doing upper endoscopy.

Finally, I get out of breath while exercising more than I used to, so maybe the stomach tests will be able to tell if it is reflux causing condition. My recent PCR showed negative for Babesia, though two others before showed positive on immunoblot.

And thank you, Girlie, for your thoughts. Hope the COVID is better.