POTS - LLMD rx'd me florinef (steroid) - help?

Plasma rife ...?

On the POTS site:

"POTS is a heterogeneous (meaning it has many causes) group of disorders with similar clinical manifestations. POTS itself is not a disease; it is simply a cluster of symptoms that are frequently seen together. This is why the 'S' in POTS stands for "Syndrome." Since POTS is not a disease, it is fair to say that POTS is caused by something else."

I would bet the majority of msids folks here have had the same symptoms.-dizziness, change in BP (inflammation of brain, probably caused by vermin clogging the vascular). Autoimmune itself is now such a rediculoulsy common word for-we don't know what the eff it is or what caused it!

Treat what is underlying, rather than throwing symptom drugs at it.

Girlie said...
Weren't you initially prescribed cortisone?

What does the LLMD say about it's immune suppressing effects?

I looked up the difference between cortisone and florinef. Florinef is a substitute for Aldosterone.
It will help regulate blood pressure. So maybe that is why the florinef was prescribed?


I'm thinking since it's a LLMD who prescribed it - he would know what he's doing?

He said it shouldn't suppress my immune system too badly. I'm still worried about it. And yeah, it was prescribed to help regulate BP.

Traveler said...
Lyme causes POTS for many people, as well as meningitis symptoms. I've had both to fairly serious levels before, but healing from these infections stopped those symptoms.

While the dose your doctor has you on is small, I would also be quite concerned about the effects it will have on your immune function should you use it for long. It's a catch 22 - staying on it will lower immune function, but if your symptoms are debilitating, it might be helpful for you to use it until you've had enough healing to no longer need it though.

I too would encourage you to not allow the doctors to send you down the "it's autoimmune related" path as well without very good evidence (and because they can't find a cause isn't enough in my opinion) as many go down that pathway when they have Lyme only to find out that what their doc's had them doing actually set them back in their healing. Lyme mimics many autoimmune conditions perfectly. Some even have positive tests for things like RA and other things only to find out later it was Lyme and company all along.

I'm 100% sure Lyme is the underlying cause of everything, but still there is autoimmunity going on and this may need to be treated, especially if there is swelling of my brain. Waiting on results from Cyrex labs...

Multiple Autoimmune Reactivity Screen
Parietal Cell + ATPase IgG + IgA Combined
( CPT CODE : 83516 )
Intrinsic Factor IgG + IgA Combined
( CPT CODE : 83516-59 )
ASCA + ANCA IgG + IgA Combined
( CPT CODE : 83516-59 )
Tropomyosin IgG + IgA Combined
( CPT CODE : 83516-59 )
Thyroglobulin IgG + IgA Combined
( CPT CODE : 83516-59 )
Thyroid Peroxidase (TPO) IgG + IgA Combined
( CPT CODE : 83516-59 )
21 Hydroxylase (Adrenal Cortex) IgG + IgA Combined
( CPT CODE : 83516-59 )
Myocardial Peptide IgG + IgA Combined
( CPT CODE : 83516-59 )
Alpha-Myosin IgG + IgA Combined ( CPT CODE : 83516-59 )
Phospholipid IgG + IgA Combined
( CPT CODE : 83516-59 )
Platelet Glycoprotein IgG + IgA Combined
( CPT CODE : 83516-59 )
Ovary/Testis* IgG + IgA Combined
( CPT CODE : 83516-59 )
Fibulin IgG + IgA Combined
( CPT CODE : 83516-59 )
Collagen Complex IgG + IgA Combined
( CPT CODE : 83516-59 )
Arthritic Peptide IgG + IgA Combined
( CPT CODE : 83516-59 )
Osteocyte IgG + IgA Combined
( CPT CODE : 83516-59 )
Cytochrome P450 (Hepatocyte) IgG + IgA Combined
( CPT CODE : 83516-59 )
Insulin + Islet Cell Antigen IgG + IgA Combined
( CPT CODE : 83516-59 )
Glutamic Acid Decarboxylase 65 (GAD 65) IgG + IgA Combined
( CPT CODE : 83516-59 )
Myelin Basic Protein IgG + IgA Combined
( CPT CODE : 83516-59 )
Asialoganglioside IgG + IgA Combined
( CPT CODE : 83516-59 )
Alpha + Beta Tubulin IgG + IgA Combined
( CPT CODE : 83516-59 )
Cerebellar IgG + IgA Combined
( CPT CODE : 83516-59 )
Synapsin IgG + IgA Combined
( CPT CODE : 83516-59 )

http://www.cyrexlabs.com/CyrexTestsArrays

Yes, my ANA test was negative, though my TPO (thyroid antibodies) were elevated, Hashimoto's level. This test delves deeper.

I've never seen a POTS patient that I thought didn't have Lyme. But if I had POTS, I'd be looking heavily into biofilm producing pathogens, copper blood level abnormalities, or metal toxicity.

happyjo said...
GH-U r always so knowledgeable. I know others have listed their suggestions for ridding the body of metal-what do you think is the best to do & how often/time of day?

Metals are difficult because they are located in different places. GI metals are fairly easy to deal with with any of the metal binders, Pectasol-C, EDTA, etc. The problem arises with metals is when they are bound to pathogens or compartmentalized. Bound metals are not easily removed, even with chelation therapy. When we are able to kill pathogens that harbor metals, they release these metals into our system and the herxes can be overwhelming. If you couldn't stand a treatment because the herx was too severe, metals were probably involved. Maximally detoxifying our body comes into play. We must deal with both the endo and exotoxins from the pathogens.

Our bones can hold an awful lot of lead and that won't be removed until all the others are removed. I don't have an answer for metals. Amy Yasko has had experience dealing with metals in autistic children. She's seen no metal removal at all after months of treatment. The metal tests indicated that the children had no metals but after months and months of treatments, the metals suddenly just poured out of these kids. Not just a few metals, a ton of them. She's even seen a pattern at which the metals are removed, cadmium 1st, nickel 2nd, etc.

I would see a biologic dentist and see about mercury fillings. I would try to determine exactly what pathogens I had and what physical environmental factors I lived in that were contributing to my issues. Borrelia is just one pathogen and in a vast majority of patients, it can be defeated with antibiotics. If you have Lyme and are struggling, you have more than Lyme. Figuring out what that "more" is can be difficult. Dybiosis needs to be addressed by examining stool contents, urinalysis by-products, symptoms, nutritional needs, and eating patterns. I am not a physician so I don't see the treatment side of our conditions. I only study to pass along pertinent information that I find.

I could write a lot about this but I don't think anything I say would be beneficial. I've never had experience with metal removal other than GI metals.