It’s Overwhelming

[Trudi]

@Lynne G./SD wrote:

B12 methyl cobalamine 1000mg sublingual 2 in the morning,2 in the evening;

Folmic acid 1000mcg 2 a day

She told me that I should make Horsetail tea

Hi Lynne–
I am homozygous for the MTHFR 1298 and have been having success with treating it. When I started the treatment, my doctor told me to go low and slow because once the body starts to work properly it can get very uncomfortable. So true–I had to back off at the beginning because of this. I’ve been off of pain meds for around 10 months, something I had relied on for the last 10 years.

My starting treatment was just 400mcg for methylated folate and 400mcg methylated B12. I’m thinking the 1000mg B12 is a typo? Is the folmic acid a methylated folate?

I also have been drinking the horsetail tea for it’s silica benefits i.e. detoxing heavy metals. Recently I came across bamboo leaf tea; it has alot more silica, other health benefits, and it tastes good :). http://bambooleaftea.net/ There is a lot more information on the net.

FYI: Green and black tea block folate absorption by up to 40%. Something to keep in mind.

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Anonymous]

I have found this information about horsetail tea on internet. It says that it contains aluminium…?

“When made into horsetail tea, it contains high amount of different minerals, including manganese, potassium, aluminum, and flavonoids”.
Linda L.

[Trudi]

@Linda L wrote:

I have found this information about horsetail tea on internet. It says that it contains aluminium…?

“When made into horsetail tea, it contains high amount of different minerals, including manganese, potassium, aluminum, and flavonoids”.
Linda L.

Hi Linda–
Yes, I also came across this years ago when I started to drink it–a real irony. I actually started drinking horsetail tea at the recommendation of my father. His mother’s (my grandmother) doctor had her on this for various ailments. My own NP had no problem with my drinking it. I haven’t used the horsetail tea since starting to drink the bamboo leaf tea about a month ago.

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[kater]

Hi Calida
I am curious about the tea and your comment that it contains lots of silica. Silica is supposed to be one of the known causative agents for SD. Don’t know if this is a different type of silica or not but I would check this out with my doc if I were you. It might not be a good form of chelating heavy metals for you. I really don’t know but wanted to let you know. Maybe someone else will add something.
good luck to you
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Lynne G.SD]

Hi Kate;
You made me laugh.Guess chemistry was not your strong point.Without silica our cells would go POUFFFF like a deflated baloon.It’s what holds us together.I did a little Google and low and behold,it took the words right out of my mouth.Here is a little Silica 101http://www.whatissilica.com/

so don’t freak out if someone tells you he/she is taking a food grade diatomatious earth,it’s the same thing except this kind is from tiny bugs instead of grasses or veggies

[kater]

Hi Lynne
yes I understand there is silica everywhere. There are reams of scholarly articles on silica and scleroderma if you google those together. It is inhaled silica it seems is the problem, not oral, but I think this is pretty well documented so personally having
SD I would not load up on supplements that have a lot of silica just in case. There are too many other helpful things for me to go there. Just my opinion.
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Lynne G.SD]

It;s the inhaled stuff that is dangerous.If you eat fruits and veggies you get heaps of it and horsetail would be no different

[A Friend]

Calida,

I’ve been absent from Roadback for a time. I found an important-to-me link with information about reactions to high dose D3. I wanted to share the link I found more recently, so did a search and found your post.

In early 2013, I had a horrific reaction after beginning my doctor’s continuing requests that I take high dose Vit D3. Problems began full-force after only 5 days on it. A full year of uncontrollable Irritable Bowel Syndrome was unleashed. Many posts were exchanged on the board on this subject.

As difficult as this period was for me (and I’m sure I didn’t absorb many nutrients during this time, which caused other problems), some light was shown on a longterm existing post-dental-wisdom-teeth-extraction condition (a condition unknown about by me, but it actually was the trigger to my 20+ years of chronic illness). I recently just happened onto information in the link below about a probable related cause of this reaction condition, and this link telling more about reasons for high dose D-3’s toxicity:

http://ctheblog.cforyourself.com/2008/12/overdosing-on-vitamin-d-side-effects.html
Thursday, December 11, 2008
Overdosing on Vitamin D: Side Effects, Toxicity, Symptoms, Poisoning

The above link — along with the posts on your RBF thread to “It’s Overwhelming” give me a lot food for thought.

Thanks for all the sharing by you and others.

AF

@Calida wrote:

@Maz wrote:

This is just a hunch, but as the Apo zith is well out of your system now, it’s possible that the generic had something to do with triggering a flare (or something else, like a seasonal flare, hormonal or stress flare, etc), but if you were on the same Teva zith dose as before, then it makes less sense that it would be the dose now, unless there is something else going on, like candida overgrowth. You mentioned being on Nystatin, so it’s less likely it’s that, but still might be worth testing.

Maz, do you think 6 weeks of ineffective Apo could have not only caused regression but triggered additional (new) problems? I felt as if the prison guards walked off the job and the inmates destroyed the prison. I wasn’t stressed at the time, physically or emotionally, but there was a sudden hormonal change so I’m looking at that, too. This intractable deep itching is a brand new symptom.

I’m guessing that the 5-MTHF sup will be a critical piece of your picture in terms of detox issues. The mino is very critical, but being able to help your body get rid of toxins from dying bugs is pretty important, too, especially with neuro probs that could be exacerbated by neuro-toxicity. Note that I’m just saying “could,” “might,” “may,” because everyone’s situation is unique and these are just fellow patient speculations to talk with the doc about. Fortunately, Dr. M. is right on board with detoxification, so he’s well-versed in all that entails.

I think you’re so right about that. The sudden cessation of perspiration (in Oct.) combined with the severe inflammation and the return of an effective Zith must have jammed the detox channels and caused toxicity. I know I need Dr.M’s help with upping the detox process. I tried the lemon-olive oil drink but it makes me do a spastic dance, as if Tourette’s joined the list of problems. I can’t use a far infrared sauna due to my light sensitivity so I’m left with the baths and glutathione and a few I haven’t tried yet.

The photosensitivity and Vit D may well be related. As you’ve got elevated liver enzymes right now, adding another drug may not be wise (i.e. Lyrica). Are you taking milk thistle, Calida, as a regular supplement? If not, perhaps you could ask Dr. M. if it’s okay to add this. Not only is it helpful for liver detox, but should help to lower liver enzymes. In fact, if he thinks you’re okay to do this, he may even give you his protocol for doing a liver flush. Again, just a hunch, but the liver enzymes could also be pointing to detox issues and building neurotoxicity as a result.

I believe the D and photosensitivity are related and it’s the severe UV sensitivity that has kept me housebound and away from lighting sources for over 18 months. The year prior to becoming ill, the doctor said she wasn’t happy with my D levels (they were within normal range but at the low end) and told me to take 20,000 units a day for a month as a “loading dose” and decreased that to 5000 daily maintenance. I’ve since read – a study, article? can’t remember- that supplemental D blocks the receptors and prevents the natural form from reaching the cells. I’m so sorry I don’t have the link to that info, I hate to just throw it out like that, so I will try to find it and post it here later. I found it interesting but I’m sure there must be more to the story. But, at the very least, the large doses of D3 may have caused problems for me.

Milk thistle sounds like something I should start soon but I’ll be patient and wait for the doctor’s ok. I have been spared organ involvement and want to protect the liver.

My brain is still fogged in and fizzing out right now. Thank you so much for responding 🙂

[Calida]

Thank you A Friend 🙂

Just wanted to get this in quickly before the lights go out….more on this when we meet again!

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[Author]

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