Prednisone response/ LDN an option?

Have you been tested for any auto-immune things (positive ANA)? How's the adrenals and the thyroid? Have you had your hormones checked lately? Those symptoms do not necessarily have to be Babesia again, but as we know there is the potential that it could be still there. When I had those symptoms it turned out to be blood sugar, adrenal and thyroid related. Since I've been working on those things, those symptoms have gotten better.

I don't think the 4 days of the prednisone will have a lasting impact on your immune function.

Interesting that you should bring up LDI? I spoke with my doctor this week and wants to try LDI again. So my one doctor thinks that my body is reacting to everything, similar to what you post above.

So last year he gave me what I believed to be an EBV LDI dose, but he had it written down as Lyme (before I knew I had Lyme). I actually felt darn good for about 3-4 days, then started to feel bad again. So if we're Lyme, my body did respond to that dose.

After that we did EBV, and it was awful. Nothing like the first dose, so I'm thinking perhaps the first one was Lyme.

As far as LDN, you can always give it a try and see if it works for you. I think you have to hang in there a bit to see if it is really going to work for you. That is unless, you truly do bad with it.

So I'm assuming that the LDI mixture you're going to get has everything in it or are you targeting specifics?

cr3ativegirl said...
So, I'm on 10 mg of prednisone as a prep for my LDI shots tomorrow. All of my neuropathy is gone. So, the question I have is, does that mean that it has just stopped my body from attacking itself and therefore Lyme isn't the problem? Or it has just stopped fighting the Lyme & co., so I have no symptoms at the moment but its still there? I'm getting a scan today, so I'll know the answer to #2 soon.....

I'm wondering, if then, that makes taking the Low dose naltrexone a good option for me? I'm seeing my functional medicine doctor next week and he was the one that suggested it. Would love some input...

You have body wide neuropathy, correct? Is it small fiber related? Large fiber? What did the onset of your neuopathy look like?

There are case studies that prednisone had helped people with acute/subacute onsets because it is an immune-mediated issue. Obviously this isn't a long term solution for most people. You could have a nerve antibody situation going on here. Small fiber neruopathy is immune mediated in the context of Lyme.

I'm so excited that you are trying LDI. You have a smart LLMD. Don't even worry about being on a low dose of steroid with Lyme. You have a MUCH different condition than the majority of the Lyme patients do. Dr. J in Maryland will give his autoimmune neuropathy patients a low dose steroid to help stop the nerve damage while he still treats with abx.

LDN is a great option for you. I've been using it for a while and it does help take the edge off pain. It reasonably priced and has a low side effect profile. Please let us know how the LDI goes!

Hi,

I was told I had small fiber neuropathy of an unknown origin 4 years before Lyme diagnosis and treatment. Since treatment, I feel the only thing that has not gone away completely is the neuropathy. I've had all myadrenals checked two year ago and had some cortisol issues (high in the wrong times). My thyroid is good, according to OB. I'm on replacement hormones Estrogen/progesterone because I am hitting menopause...

It's mostly in my feet, but travels to hands, face, shins, rotating around.

My Ana was 1:80, so doctors didnt seemed alarmed about that. I think it would important to know what it is now. If it's worse, then I think it is important to figure this out.

cr3ativegirl said...
I also kind of wonder if all the immune modulating herbs I am on are counterproductive to the LDI shots....

That's a question I have as well for my doctor. It's like telling your immune system, yes attack--no don't attack.

Krimpet - I've recently started progesterone cream...I'm only taking it every other day at this point.

I had tried it for several weeks prior to diagnosis...didn't notice it helping...but trying it again (around and around we go)

i'm taking 16 mg at bedtime. (cream) - I think 20 mg is approximately 100 mg of oral.

cr3ativegirl said...
Hi,

I was told I had small fiber neuropathy of an unknown origin 4 years before Lyme diagnosis and treatment. Since treatment, I feel the only thing that has not gone away completely is the neuropathy. I've had all myadrenals checked two year ago and had some cortisol issues (high in the wrong times). My thyroid is good, according to OB. I'm on replacement hormones Estrogen/progesterone because I am hitting menopause...

It's mostly in my feet, but travels to hands, face, shins, rotating around.

My Ana was 1:80, so doctors didnt seemed alarmed about that. I think it would important to know what it is now. If it's worse, then I think it is important to figure this out.

Hormone replacement can actually help with neuropathy.

It's not uncommon to have Lyme elevate your ANA. Often, it will return back to normal after treatment.

madisongrrl said...

Girlie said...
madisongrrl - what is the difference between small and large fibre neuropathy?

...and how would I know which i have?

I just did a quick 'search' - is sfn - more burning pain - and lfn - muscle wasting?

Small fibers are mostly un- or thinly myelinated (delta A and C) and are found in your skin and are responsible for pain, vibration, touch, and temperature sensations.

Large fibers are myelinated and control your muscle movements.

Both of type nerve damages are very painful, but the people with SFN will have more pain due.

Large fiber damage can be identified with an EMG and small fiber damage with a punch biopsy or QSART.

Thanks madisongrrl. I think maybe I had large fiber neuropathy in the beginning when I got the sudden muscle atrophy. And I would have episodes of my right leg just kicking/jerking when I was laying in bed.
Now that is gone...but I do have the small fibre neuropathy - pain, not the temperature/vibratoin/touch issues.
(except for a slightly numb left index finger pad)

cr3ativegirl - if you do the LDN, let us know how you respond to it.

Well I have some fantastic news and some bad news. I had my scan and I've cleared all Lyme, Bart, and Babesia from my system (or it's so minute, it's not registering.) hallelujah. I'm to take Cats claw and Jk fro a year. I broke down crying. I hadn't realized how much I was waiting for that day. For the record, she recommends samento and banderol for the year, so I might switch.

On to the bad news, Krimpet- you were dead right. I have Mycoplasma in my thyroid, adrenals, which probably accounts for the hormone problems I'm having. It's also in my lungs, small intestine and the interneurons of my nervous system.

I also have Mucor in my myelin sheath, Schwann cells, interneurons, motor neurons and sensory neurons.

The good news about that it that I've cleared both before with her remedies. But she was drilling me on how am I getting the exposure. It was around November, I started to feel unwell again. Then I realized that I have been going to the indoor steam shower at our club since Nov. trying to detox so I'm hoping that if I stop going, then I can get rid of the mycotoxins. If not, I have to figure out if it really is the house. I do feel better when I leave town. It might be my town. It's moldy there Year round and this all started when I moved there. She recommended an infrared sauna. I guess I'll get one.

LLMD tomorrow. Then heading home!

The Electro dermal screening. They use it in Europe but it isn't used here. The Naturopath who works with my Lyme doc screens all his patients cuz labs don't work. It really blows my mind how it works, but it does.

It uses the meridians from accupuncture to detect blockages and then when she finds a blockage, she's goes down the list of pathogens and checks each one. Then when she finds one, she checks each system in the body.

They have decoded the DNA sequencing of all the pathogens, and each one emits a different electrical frequency.

It's quite scientific. I'm thinking of getting one and starting a business to help people. That is what she did. She has Lyme and now she gives back. It's really inexpensive if you wa t to go see her, email me.

Reading with interest and super glad that you are getting the help that you need!!

cr3ativegirl - Does your LLMD accept the EDS as a 'tool' for diagnosis?

Cr3ativegirl, this is so interesting! I've read it over and over but I just can't get it but it's speaking to me lol.
I'll keep trying to get it into my brain.
So excited to hear you're clear of Lyme, Bart and Babs. The mold stuff is a real pain. I'm being treated with EDTA and Amp B nasal rinse (yuc) and pulsing Interfase Plus for the gut mold. Did you have add or alt for molds?