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Hi Steve,
I understand that none of you are Drs here (although at times it doesn’t seem like thats the case!), is it possible that MIL could have a certain degree of hypercoaguability due to high fibrin levels?
Absolutely. According to some research I did several years ago, 70% of scleroderma patients have this problem.
If so, would we be safe to start giving her something like Lumbrokinase, or Nattokinase? She is already taking an anti platelet medicine (Clopidogrel), once every other day. As both have a blood thinning effect, we wouldn’t want to put her at increased risk of bleeding, but maybe if we alternate between them each day, that would be safe? (She used to take Clopidogrel every day, but her Dr said she could cut down due to the dizziness).
That is a difficult question to answer. Considering that they sometimes use clopidogrel plus aspirin, what you are proposing would probably be relatively safe. When I first started taking systemic enzymes, I was taking taking daily low-dose aspirin. I took one dose of a systemic enzyme three times a week, and low-dose aspirin on all the other days. Eventually I discontinued the aspirin. I should probably add that I never took more than one dose of a systemic enzyme three times a week, and this worked quite well. I used bromelain, nattokinase, and serrapeptase (individually) in rotation.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Steve;
Red blood cell aggregation is in many immune diseases.In SD it forms in Rouleaux which can make tiny capillaries burst.The only thing that works is either TPE or Natto.I used natto and had almost immediate relief.Lab techs told me they had a hatd time doing blood draws and laughingly if I had molasses in my veins.
https://sclerodermainfo.org/pdf/Research-Rheology-A4.pdf
https://www.verywellhealth.com/what-is-nattokinase-89831Hi guys,
Thanks both so much for replying, and happy new year to you both!
A general comment to you both – we got her tested for Fibrinogen just the other day and her test results came back normal…! Range is 200-400, and she has 225.
I dont understand the mechanisms of how the Fibrin works in the body, but my vague understanding was that over time the Fibrin can build up and form plaques, much like cholesterol, in the vascular system. Thinking logically, this does not necessarily mean that her Fibrin levels would be elevated, right? As in, if a gradual buildup over time was happening, the general level of Fibrin circulating her system wouldn’t neceserily be higher, its more a case of that she has a buildup on the walls of her capillaries etc.. is this possible? Or, is this test result in fact suggesting that the Fibrin is not the problem?
Phil – thanks for giving us your experiences. May I ask what you were taking the low dose aspirin for? As I said, MIL takes anti-platelet Clopidogrel due to her ‘mini stroke’. Her test results generally show slightly elevated platelets (I think the upper range is 450, and her tests usually come back around 500/550, so not hugely elevated). She used to be taking it every day, but given her dizziness she dropped to every other day. It didn’t really help the dizziness, but the Neurologist recommended to continue taking as a preventative measure against possible future strokes. My thinking is that as she was previously taking every day, the Nattokinase could basically take the place of the days she now skips the Clopidogrel. I realise this is dumbing down what’s at play massively, because they are by no means like for like. But as you say, it would keep things safe?
Lynne, thank you for your comments and links – we have been told about ‘sticky’ blood before, and I never really understood it until reading this article. Indeed, when she was in hospital around 14 months ago due to her stroke, the nurses always struggled to get blood/administer the IVs. Even more recently when she has had blood draws from home, the nurses have made comments of her blood being quite thick, so it somewhat correlates with your experience, and generally ties things together (aside from the Fibrin test results?!)
It was in fact you who recommended Natto many years ago to us over on the Inspire forum, and luck would have it that we still have a bottle! That stuff is not available here in Ecuador, but this means we can let her try and see how she gets on.Lynne, when you say immediate relief, relief from what exactly? Pain, lightheadedness, fatigue?
Finally guys, what’s the best way to take the Nattokinase? The bottle says with a meal, but I’ve read taking it with food can mean it just acts like a digestive enzyme, and in fact it’s better to take on an empty stomach. What do you guys recommend?
Thank you again for your help!
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Here for my Mother In Law.
Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.
Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.Current Supps:
Vitamin B-complex, C, D, E. Potassium GluconaHi Steve;
You are such a great son in law for looking after your MILand I hope she knows it.
I did not have the same symptoms as your mom,just felt like my body was vibrating inside,had to sit down and a few minutes later it was gone.SD is one weird disease. I would not take it with food for the reason you mention but half an hour before.After a week of daily natto my blood ran freely so of course being the scientist I am I played Guinea Pig with myself.Started taking it every second day,no problem a couple weeks later Just once a week and all was fine.I never looked into it but I think it has a residual effect that lasts for quite a while.Now I take maybe once a month.I am not sure if it is the natto per say or if my doxy is holding things at a normal level.
My hubby often gets numb hands,I guess it is an age related thing and natto works for him also.Hi Steve
A general comment to you both – we got her tested for Fibrinogen just the other day and her test results came back normal…! Range is 200-400, and she has 225.
The usual tests are useless for detecting this particular condition. There was a test panel, performed by a special laboratory, available in the past, but the company was sold and the new owner discontinued it. There may be a way to approximate it by combining several standard tests, though.
Phil – thanks for giving us your experiences. May I ask what you were taking the low dose aspirin for?
I was taking it for poor circulation. And hopefully to reduce my risk of having a heart attack. I knew that something was wrong because fairly often I was waking up with a numb arm or leg, which isn’t normal. If it happens rarely, that’s normal, but not when it happens frequently. By the way, the systemic enzymes that I take totally eliminated that problem.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinHi Steve;
For some crazy reason I was thinking of your MIL while doing the groceries…go figure! How is she doing?Hi Lynne!
Wow, so sorry for not replying to this – I usually get an email notification after every reply, but this time nothing! So nice of you to reach out. Thanks Phil as well for your response, sorry for not replying (for same reason as above!)
Well, general update: MIL not really doing much better unfortunately. Yet her bloodwork shows HUGE improvement…
The last two months running, all of her bloodwork has come back normal.. thats to say, every value is within range. By everything I mean, white and red blood cells, hemoglobin (and associated tests), thyroid, vitamin b12, fibrin… The only exception was iron last month, which was under. However, as of today her iron levels are also within the ‘normal’ range, by a healthy amount.
Perhaps the biggest revelation was the platelets… after all the discussion with you guys, we got her started on a rotation of Nattokinase, Lumbrokinase, and Serrapeptase (so far we’ve done a month of each). She now takes her anti-platelet medicine once every two days. The two days in between her dose of Clopidogrel, she takes whichever of the enzymes she happens to be taking at the time.
Last month was the first time we got her tested after starting the systemic enzymes, and for the first time in a long time her platelets were within range! We waited another month (until now) to get her re-checked again to make sure it wasn’t a fluke… and today, her platelets are still within range (albeit a little higher than last month, but still in normal range) So the advice you guys gave us was spot on by the looks of things – the systemic enzymes must be breaking down the protein buildups/sticky blood, which are possibly registering as platelets on the machine, and her actual true platelet level is gradually being revealed… and it looks normal! Soon, we might consider taking her down to the anti-platelet once every three days, but we want to go slow so we can be sure that we aren’t putting her at risk of anything…
As of now, there are basically two main complaints that she has: the neuropathic pain, and the light headedness.
In terms of the neuropathic pain, we are trying to do what we can. We found great resource on someone who ‘cured’ their neuropathy with supplements (albeit 50 every day): https://peripheralart.com/2018/11/fifty-pills-a-day-cure/
We did our own research off the back of this, and got the supplements we felt most appropriate to her etc. We are also doing our upmost to get her moving. We know that circulation (or lack of) plays a big role in neuropathy etc, more on that in a bit…
As for the light headedness… well, you guys know we are/have tried everything. Even the supposed main culprit for the light head, ie the anemia, seems to have resolved now, certainly as far as her bloodwork goes anyway, yet there seems to be zero improvement with her light head…
Atherosclerosios/Peripheral Artery Disease are two things we have/are looking in to. As far as PAD goes, it doesn’t convince us that this is the issue. Firstly, she doesn’t really have many of the specific symptoms. We also did a check of her Ankle Brachial Pressure Index, and that comes back OK… Atherosclerosis is obviously part of Scleroderma, which is probably affecting her circulation (again more on that in a bit..).
We have also thought perhaps its a worsening of the fibrosis of her lungs. She has always had some, but again she doesn’t really have many of the symptoms associated with advanced fibrosis, aside from shortness of breath and dizziness. Also, her oxygen saturation is sitting around 92%, which is actually the same as mine! We’re also high altitude which might affect that… A dry cough is the top symptom of pulmonary fibrosis, but she rarely coughs. We’re obviously not doctors, but from what we can tell, our conclusion is that this probably isnt the cause…
So it finally brings me to circulation. It’s an issue for everyone with these rheumatic diseases. Thats what gives her cold feet, its what has caused her neuropathy, and we are certain that it is the circulation (lack of) that is causing her light headedness now too. Since her stroke in October 2019, her physical activity has severely dropped. The first few months after the stroke, she was understandably bed-ridden. But just as she was starting her physical therapy, the pandemic hit.
Since then, we try to motivate her to move in the day, but I can say that she is probably only actively moving for 30 minutes in the entire day. I don’t mean 30 mins exercise, I mean literally moving for 30 mins. The rest of the time, she is lying in bed, or sitting and not moving. I cant imagine what this has done to the strength of her heart, given how weak her body is right now… on top of the atherosclerosis that she probably has, we think that she has lost strength in her heart, and it simply cant pump enough blood to the extremities/her head.
Does this have traction? What can we do to help this? Every day is a battle to get her up and moving.. unfortunately she isn’t a get up and go person, she is a sit down and give up (don’t blame her, but it doesn’t help her for sure). Do you guys have any other suggestions? Anything else we should be looking for/doing?
Thank you all for your help previously, and we all hope everyone is well and safe!!
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Here for my Mother In Law.
Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.
Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.Current Supps:
Vitamin B-complex, C, D, E. Potassium GluconaSteve, I can’t remember – does MIL get treated for thyroid?
All this is such positive news and so happy to hear of these wonderful improvements. It all takes time with advanced SD but worth hanging in there, as you are now proving!!! The first year is often about slowing the freight train for progression, after which incremental improvements occur. Yay!
As for exercise or just slow movements for range of motion…do you guys have access to a warm pool? MIL might take some goading into it, but if she watches these videos, she might be inclined to try at her own pace – even just floating and trying to move her limbs. I have found the Fluid Running program to be the most effective form of low impact exercise and one can go at one’s own pace, without pain, and feel very safe with the waist flotation device anchored to a ladder. You can even get in the water together. (Not selling this program nor have any financial interests in it).
Please send MIL my best – I think of her and you both often!
Does your MIL have any interests like handicrafts, colouring books etc?
RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousHi Maz!
So nice to hear from you, we are also regularly thinking of you and your family, and everything you have done for us, and still do for us and many people here on this forum. We really hope you are all staying well all things considered!
Yes MIL is on 75mcg of Levothyroxine. Its funny because over the past 8 months or so, we had been tweaking her thyroid med up and down, because her levels were never all good (TSH would be off but the rest good, then after adjustment TSH would be good but the rest off, etc). However, we’ve stuck at 75mcg for some time, and yes these last two round of tests her thyroid levels have come back good… we can only get FT3, FT4, and TSH checked over here (the RT3, for example, has to be sent out of the country to be tested, and therefore is very expensive…). But of those three (FT3, FT4, TSH), the levels have been all within range for the first time in a while. Which is encouraging too!
Yes we always repeat your words to ourselves how the first year is just about slowing down the progression. We cant expect to see miracles we know, so the blood improvements are at least a sign that we’re heading in the right direction for sure! We just wish we could help more with the pain and light headedness.. 🙁
I think that in a way, we always want to attribute every symptom to a specific ‘thing’, which can some way be resolved with a supplement/pill, or at least worked on directly in some manner. We’ve had in our head for so long that there is something specific causing the light-headedness, such as anemia, which once discovered, could be directly addressed and resolved via supplementation etc. However, despite having addressed the anemia (as far as the blood goes, there is no sign of it now), the light headedness continues, as strong as ever…
I should also mention that she has been on Methylene Blue for the past few months. It came at the recommendation/suggestion of Dr M, his reasoning being that the medicine could possibly help with greater oxygenation of the blood (more reading helped us understand that it is used to treat the condition methemoglobinemia… hope I spelt right!) He also said that recent research suggested it also worked like an anti-microbial for the likes of Lyme. So it could possibly serve as a double header, but if not at least it would be doing something for the Lyme. MIL reported that she felt some alleviation of dizziness the first few days, but since then no real difference.
She has also resumed HBOT, albeit only 5 sessions. Similarly she reported feeling a bit better during the first session, but afterwards much of the same. Then for the following 4 sessions, not really feeling any different.
So maybe the dizziness/light headedness cant really be attributed to a specific ‘thing’, and perhaps is just an unfortunate symptom of the Lyme/Scleroderma, which realistically wont improve until we begin to see, as you say, incremental improvements of her overall symptoms?
As for the pool – she tried this some time ago. Unfortunately heated pools hard to come by over here (heated sufficiently for her at least)… she got kind of sick after one session and never went back! We thought at the time it would have been great for her, however it didn’t go down to well with her… she’s not easy(!)
Thanks again for thinking of us!
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Here for my Mother In Law.
Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.
Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.Current Supps:
Vitamin B-complex, C, D, E. Potassium GluconaHI Linda,
Sorry I just saw your reply… no, she is in fact a TV addict. Always has been, loves here telenovelas! So she doesn’t really have any ‘hobbies’, be it indoor or outdoor. We take her out almost every day in the car to drive around, we have to run errands etc. She likes that, but again it’s much of the same seated position. We do what we can with exercises, stretching… we now have her walking without a pushie/walking stick around laps of our house, which is a HUGE improvement on how it was. Unfortunately she is very scared, never feeling stable and always thinking she is going to fall. Much of what is holding her back is her fear/lack of confidence, more than anything else.
Her hands are also pretty severely curled due to the scleroderma. We bought her a squeezy stress ball thing to be squeezing to keep her moving her fingers etc, but its not often used either…!
We always tell her that the pain will be less, and dizziness, if she maintains movement and exercise as often as possible. We do simple leg exercises on the bed like raising the legs, moving the feet/ankles etc, nothing too strenuous. I guess we just want to make sure that its suitable/not too much, or if we should be giving her that push to do more (which is always the case because she hates exercising too…!)
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Here for my Mother In Law.
Scleroderma 30+ years, Lyme/Bartonella (perhaps 30+ years too, diagnosed in October 2019), Hypothyroid, Anemia (of chronic diseases we think?), Neuropathy, Mini-stroke/brain lesions Oct 2019, Candida.
Current Meds:
**Minocin 100mg x2 day, every day. **Rifampin 300mg 1x day MWF. **75mcg Levothyroxine. **5mg Prednisone. **Clopidogrel 75mg. **300mg Fluconazole every Sunday. **300mg Gabapentin. **LDN 4.5mg.Current Supps:
Vitamin B-complex, C, D, E. Potassium GluconaHey Steve,I just might have a fix for your inactive mom.My hubby was driving me mad sitting on Facebook all day and turning into a lumop GRRRRR so for Christmas I got him an under desk cycle.The are many models and this is the one I got.
He is still stuck on FB but gets in a couple hours a day of excersise.I use it also and it exercises all the muscles up to the waist.When it is new it is hard to use but after a couple days it spins easily.I agree with you that one of her big problems is lack of blood flow and she just has to move….alot.Explain to her that lack of blood flow to the brain causes dimentis.Tha just might scare her into doing something. The only supplement I know of that can help with newropathy is vitamin B! and ALA(alpha lipoic acid.
Hope this helps,LynneHi Steve,
Lynne’s idea for the stationary portable cycle is really good! She could use it while watching her fav shows and not risk feeling like she’s going to fall. Other than this, I’ve heard of others using a mini trampoline – just to sit on and bounce to get lymphatic movement going, but might not help dizziness.
When you say MIL’s thyroid levels are within range, can you provide an idea of where in the range? Many people still feel unwell when “in range,” but they still aren’t ideal for them. When ranges were created for thyroid levels, they were formulated in a population of otherwise healthy people. Just a thought to ponder…
It’s hard to know if feeling initially better with a new treatment is just placebo effect or if it’s the “quiet before the storm” that one might get with a new Lyme treatment prior to herxing. Hearing of the gradual improvements in some areas of concern, though, sounds like progress, so the things you’re doing (including your unending support) sound like you are seeing very positive signs of improvement.
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