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Well, after taking a very long break from chelation (18 months), I'm back doing rounds.
All of 2021 was one UTI after another. They actually started right after Thanksgiving of 2020, then another one in December. I think I had 6 or 7 more in 2021.
We flew to California for a week in May 2021, which was a disaster. I've just realized a few weeks ago that a ride on a transportation cart set off a meltdown and sent me into fight or flight mode all that week and I couldn't sleep. I was having multiple meltdowns daily and wanted to come home after a few days. Had there been a non stop flight from Orange County, I would have flown home. We did take our Christmas photo for that year and we were able to visit Calvary Chapel Chino Hills.
In July I caught the worst respiratory virus I've ever had. Our youngest daughter caught it, as well and said the same thing. It was not covid! Tested negative twice on both the rapid test and 3 antibody tests.
At the end of August, I went to my PCP for yet another UTI and she ran labs because I was there. Big mistake, but it got the ball rolling for me to start looking into what was going on.
Hmm, how can I shorten the last 12 months? PCP tested my thyroid, only TSH and T4. Another big mistake. My TSH has been non existent for years (I had my thyroid ablated with radioactive iodine around 2006). My TSH was near zero at .010 (range .45 - 4.5). She told me to lower my Armour thyroid. I did so and my hair was falling out, depressed and crying every day and couldn't (tmi) poop. I had gone to the Emergency Room and she saw my TSH, which they ran there and said I needed to reduce my thyroid meds further. I said, I'm not doing that and gave her the reasons above and told her the TSH doesn't measure thyroid hormone in the body, it measures the message the PITUITARY is sending to the thyroid for how thyroid hormone to make.
Thankfully, I found Stop The Thyroid Madness website and Functional MD near me that was willing to order the testing STTM recommended. You can find those recommended labs HERE. If your doctor won't order them, they have a discounted link for labs that you can have drawn at a lab near you.
I'm going to go into some details here (not all), because many run into the same problem and their PCP or endocrinologist doesn't really understand how to treat thyroid problems properly. There, I said it. It's true. Just join a STTM Facebook group and see how many women have said the same thing!
The basic labs for thyroid are Free T3, Free T4 and Reverse T3. (not T3 and T4 - those are different from Free T3 and Free T4) Turns out my Reverse T3 was high and my Free T3 (usable) was low and I was hypothyroid. Your body is supposed to make or take(meds) T4(storage hormone) and converts it to T3, the thyroid hormone your body uses. If you have inflammation in your body (took another year to figure it out what was causing it), your body will convert T4 to T3 and instead make anti-thyroid and will show up as high Reverse T3.
I hope I got that right!
So, I convinced my functional MD, who after hearing my whole health story- lyme, heavy metals, thyroid), to agree to prescribe T3 (liothyronine) only. Since I'm not taking any T4, I wouldn't have any storage thyroid hormone in my body, so I had to take it 3 times a day because it has a short half life.
I started at 5 mcg 3 x a day and increased 1.25 to 2.5 mcg once a week. Most people increase 2.5 to 5 mcg every 5 - 7 days, but my adrenals were shot and the only way I could increase was 1.25 mcg a week. I used a micro scale to weigh my dose.
I started Nov 1st and remember waking up mid November happy (and not crying) for the first time in a long time. It usually takes 12 weeks to clear Reverse T3, but mine was down to <5 (11 or below is good) in 6 weeks.
My doctor wanted me to go back on some Armour (has T4 and T3) in January. It was awful . I was once again waking up with heart pounding and not being able to get back to sleep. Oh, did I forget to tell you that was happening back in the Fall?
I went back to T3 only. Once again, I searched and found an integrative practice who was recommended by STTM. I found RIH in Winston-Salem, which was a 2 hour drive from home. Their doctors weren't taking any new patients, but after applying I got accepted with a PA in mid April. My case is pretty complicated and all the labs I've done and 2 trips to the ER in February didn't reveal what was causing all this.
Some good news mid April, my Free T3 was optimal - so I can check my thyroid off the list.
I purchased this massage gun to relieve sore muscles:
I went to a Nephrologist in May, more labs, then another appointment via telehealth. Nothing. Come back in a year.
Then at a 2nd appointment to RIH, my PA asked me if I've ever heard or tried LDN (low dose naltrexone). I said I've heard and read some about it. She prescribed it and I received my compounded .5 mg LDN in the mail at the end of May.
I started taking it May 30th and it's helped me to sleep a bit better (up 3 times a night, instead of 5-10) and it's helped resolve my IC symptoms. You can look up Interstitial Cystitis symptoms yourself. What a blessing.
I worked up to 2mg, but began having unpleasant symptoms after about a week, where I was afraid to not be near a bathroom. I'll leave it at that. I did notice at 2mg, is that I was only getting up once or twice a night and the IC symptoms were completely gone and the neuropathy in my legs was a little better. Unfortunately, I had to go back down to 1.5 mg again. Sometimes, the side affect I was having is because of the microcrystalline cellulose filler, so I ordered a new prescription with magnesium glycinate as a filler.
Thankfully, I think I've figured out that the problem is too much magnesium. I stopped all magnesium (I was taking magnesium malate and magnesium glycinate) and the problem stopped. I'm now at 2.0, and am anxious to move up to the full dose of 4.5 mg.
In mid June, I had an appt with a neurologist and he ordered lots of labs (11 vials of blood!) and 3 MRIs. The 11 vials of blood revealed I was deficient in vitamin E and .... Scleroderma antibodies. Scleroderma is a rare autoimmune condition. That explains the super tight muscles and neuropathy in my legs, and my 30 plus pound weight loss since last August, muscle atrophy, fat pads atrophy on the bottom of my feet and the loss of my curves. There are some medical papers that say scleroderma can be the result of heavy metals. Let's hope chelation will help my body heal.
If you're a long time follower of this blog, I lost weight without meaning to (the first time) back in 2015. I also listed the problem with the bottom of my feet.
As for the MRIs which were ordered to check for MS, I went to my appointment several weeks ago and didn't make it 2 minutes before I asked to be brought out. I knew I wouldn't last long when a cage was put over my face and my neck tucked in. I wore earplugs, but I should have known that the loud noise would send me over the edge.
I had a meltdown after they took me out. Being in a very small space, being confined by the cage over my head and the loud noise of the machine, sent me into fight or flight mode for the next several days. I couldn't sleep and I kept having flashbacks to being in the MRI machine.
I won't be going back even in an open MRI machine with valium. I will have to be put under if the neurologist really wants to do them.
Phew! That catches you up to my trials and tribulations for 2022!!!
The good news for 2022 not related to health? I have a new grandson! Photo taken when he met his big sister.
Where do I go from here?
I'm hoping to work up to 4.5mg of LDN
I'm taking Perfect Aminos recommended by someone in a scleroderma group for building muscle and gaining/maintaining weight.
I purchased a LifePro Hovert vibration place to increase circulation in my legs and help me with balance. Been using it 3 times a day for about a week and I think it helps my balance!
I purchased a BioMax 900 infrared light panel from Platinum Therapy and I believe that's helping too. I'll do another post in a month or so on how it's helping.
...and lastly, I'm on my 3rd round (round 111) after starting back up, of Andy Cutler Chelation at 10 mg Alpha Lipoic Acid every 3 hours around the clock for 63 hours. Round 112 was 12 mgs. Minor symptoms on round and will stay at 12 mg for 3 rounds minimum, until no symptoms are felt on or off round.
The next dose increase will be 18mg.
That's enough for now! Stop by my DIY blog to see what we've been doing at our mountain cottage. Click on the photo of the bookcase on the right sidebar.
Pam
symptoms:
weight 118
Dizziness/off balance
lumps/atrophy bottom of feet
thick skin/tight muscles, muscle atrophy, neuropathy on feet, legs and part of lower trunk.
gait hasn't improved
brain fog/dizziness late afternoon- happens rarely
sleep - is 2 points better- getting up most nights 2-3 times.
sleeping on good nights 2- 3 hour stretches.
energy - Have a bit more energy.
On the few nights I only get 4-5 hours of sleep, I don't feel awful, like a zombie.
depression/crying for no reason - not lately
ringing in ears - high pitch is much less
nails are better (this was mostly a thyroid problem)
blurry eyes for a whole day occur rarely
IC (interstitial cystitis) symptoms are much improved (thanks to LDN.
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