I have had TID for 53 years. Poor diabetes control in my teens and twenties resulted in poor blood flow down my legs showing up beginning in my 40s. Just went thru six weeks of Hyperbaric Oxygen Therapy (they put you in a pressure chamber for 2 hours a day to try to force blood and antibiotics to a wound on your extremities, in my case my toes).
After six weeks, no improvement and very painful. The only antibiotic they used was Doxyycycline. He claims Doxycycline is the only antibiotic that is used to fight a bone infection. Doctor also says all the ancillaries in my toes are now closed so no blood and antibiotics can get to the toes. Thus amputate.
If there are other Antibiotics that could work they were never tried. I found over 200 on the internet myself.
He could be right that if the capillaries are closed in my toes all of a sudden that no medication could fix the bone infection. But if the are not closed (they never tested as far as I know) it could be that Doxycycline did not work on me but some other antibiotic might have.
Does anyone have any knowledge or an opinion on this?
The usual protocol is to try 3 antibiotics before giving up on infections. But I don’t know about bone infections. There might just be the one.
I’m glad I’ve never had issues like this. At least not yet. I’m 32 years in. I have other issues with my feet
I have plantar fibromatosis which is just lumps in my feet but they cause pain and tingling and I always worry it could be neuropathy or PAD or something.
So I have to say these stories give me anxiety a little.
So if they amputate how far are they going? Both feet? Just toes?
This has got to be rough to deal with.
I wish I had more answers for you.
Unfortunately we find out about long term complications as we become older.
We are supposed to have three arteries going down each leg. My left leg has only one and it ends below my knee. The arteries have been calcified (turned to bone) as has most arteries in my body. I do have capillaries in my lower left leg which is the only way blood is getting down my leg and to my foot. I am trying to develop new capillaries thru walking walking (painful and slow) and by being on an arterial pump three or more hours a day. I am now taking five oxycodeine tablets a day to relieve the pain and have to sleep with my foot on the floor so gravity pulls blood to the toes. If we determine capillaries are not developing or the pain becomes unbearable the leg will come off just below the knee. If they amputate lower it would not heal as wounds (amputation) need blood to heal.
I take it one day at a time but some days are awful.
I currently have an A1C of about 5.3 and am 97% Time in Range (65-150). If only I had a CGM and Tandem pump (Control IQ) when I was younger!
I actually don’t know how I survived the early days.
I was taking NPH and regular insulin. It was a crazy roller coaster all the time.
I tested once a day with those strips you had to bleed half a liter of blood on. Then set a timer. Wipe it off with cotton then set another timer then compare it on a color chart.
It seemed cutting edge back then.
I’ve been in decent control for 20 years and now I’m in very good control with my hybrid loop.
I walk and hike a lot. Even when my feet hurt, I refuse to stop.
It’s too bad they can’t transplant some arteries to your extremities. Maybe it’s too far gone in your case.
Let’s hope for the best
I can’t believe I survived the early days. Got T1 at 16. After that, I was on the track team, ran cross country, weightlifting, played 45 holes of golf in a day, etc. I guess I survived by keeping my BG high all the time hence developing long-term complications. Today I panic if I have to change my CGM sensor and I have no reading for 2 hours. In the early days there was no blood tests, used to test urine and compare to charts.
I have had my arteries transplanted with veins from other part of my body but that usually lasts only five years. Anyone that has had high BG for many years (even if low now) should have their body tested for calcification although there is not much that can be done.
Best of luck to us all. This is a dreadful disease but still could be worse.
@rcarli, my heart goes out to you! I am so sorry about the health issues you face now. You are brave to bring your story to us, even though we don’t like to consider this reality.
I fear that I am heading down a similar path as you. I know that nitric oxide is the body’s natural vasodilator. I tape my mouth shut each night so that I force breathing through my nose when I sleep. I understand that nose breathing increases nitric oxide levels in the body.
I’ve also taken L-Arginine supplements in the past as that has been found to increase nitric oxide levels. Each night I take a teaspoon of SuperBeets, a powder concentrated from beets and known to raise nitric oxide levels.
Have you thought about taking Viagra? Jokes aside, it works as a vasodilator. I wonder the same thing about nitro-glycerin.
I understand that calcium in blood vessels is the body’s way of trying to fix a problem. I wonder if there might be some lifestyle practices that could allow reversal or even just arrest of this calcium depositing process.
I ran across this video that talks about the benefits of Vitamin K2. It mentions that Vitamin K2 inhibits calcification of blood vessels. I’ve been taking K2 in combination with Vitamin D3 for a few years now.
I realize that my suggestions might not help you at all.
@rcarli I’m sorry to read about your ongoing arterial complications - it can’t be easy for you.
I recall that at some point you had a kidney transplant. Have any of your docs suggested that kidney disease played a role with your arterial calcification? Or did they just surmise that years of diabetes, high blood sugars and hypertension all were contributing factors?
Never have any of my docs mentioned “calcification” with respect to non cardiac arteries. At what point were you made aware this had become a threat to your health and well being?
I sure hope things take a turn for the better … you deserve a break.
Jim
Thanks for your concern in comments. Seeing my doctor next week in Alaska about nitric oxide. I’ve heard that the human body calcifies as it gets older. As a result, I am now trying to maintain excellent control so my diabetes doesn’t add further calcification. Thx.
You’re correct I had a kidney transplant several years ago and it’s going extremely well. At the time, they told me that they would bring me into surgery but couldn’t guarantee that they would transplant a kidney. As it turned out they found a tiny spot in my abdomen that wasn’t calcified and everything came out fine.
Having high blood sugars was what caused calcification it had nothing to do with the kidney disease. I had bypass surgery replaced artery with a vein about 20 years ago so that’s when I first knew about calcification my leg. Thank God I have been walking and walking ever since and that has what created all the ancillaries that allowed me to keep my limbs. I’m still walking although very slowly in very painfully.
@Terry4. You’re correct - both nitro and sildenafil are vasodilators. I’m not sure you’d be able to convince a doctor to prescribe either for off label use to control arterial calcification.
I was prescribed nitro (patches) a couple of years ago to improve coronary vasodilation.
I have been thinking about you since I read your post a few days ago. I am so sorry that your type 1 has caused you so many problems. So many of us who grew up with only urine testing and no A1c testing did a poor job taking care of our diabetes in our early years. It is often almost too late once complications start appearing. I could have been you, but for some reason I am not. Diabetes is not a fair disease. It stinks.
Please keep letting us know how you are doing. You will be in my thoughts.
I’m both sad but relieved to tell you that I had my left leg amputated below the knee yesterday. I tried everything to keep the leg for the last 8 months but the pain became so intolerable that I had to go ahead with the surgery. My main message to diabetics is to avoid running high and very high blood sugars for a long period of time. I am fairly certain that it was long-term complications of having high blood sugars as a youth that resulted in long-term complications that could not have been avoided even though I improved my management tremendously. I’m very open to talking about my amputation and my kidney transplant of 3 years ago or anything else that I’ve endured although I feel very fortunate and am going to continue to manage my diabetes in good fashion.
I’m sorry to read about your troubles, @rcarli. Sharing your experience will help others. Your good attitude will help you but I’m sure it’s still not easy.
Hugs @rcarli! I’m so sorry to hear this, but happy to hear you are relieved. I’m very glad the pain you experienced will be behind you.
Can you share what you tried, please?
I reread the posts above and the title talks about doxycycline. I remember trying to see if there was another antibiotic which would benefit you, but I was unsuccessful.
You talked about hyperbaric oxygen therapy too.
You talk of walking, painful and slow.
Of being on an arterial pump. What is this?
Is there anything else you tried?
Again, lots of hugs, good thoughts, and prayers are going your way!
Tapestry thank you for your good thoughts and prayers. I have had T1D for 54 years since age 15. About 20 years ago my left foot turned blue and a hospital in Boston wanted to amputate. Although I may have felt some numbness in my foot it was the first time I knew I had a foot problem. High blood sugars is an indication that plaque is beginning to build up in veins and arteries. For me the plaque had begun to calcify so that there was less of a passageway for blood to move through the veins and arteries. So 20 years ago I had a bypass in my bad leg in which they put a vein from another part of my body and replaced the vein that was almost totally calcified and blocked. That’s saved my leg for about 8 years before that vein became calcified. Fortunately I had increased my walking and running activities
and developed ancillaries or capillaries in that leg which continued to bring blood flow to my toes. For me it was walking and running that allowed me to keep the leg for 20 years and should be beneficial to others as well. Even though veins and arteries were clogged the small capillaries allowed blood to move down my leg into my foot. I encourage everyone to increase their blood flow activities such as walking.
I am getting tired and will continue this shortly.
After moving from Boston to Raleigh North Carolina, I found the bypass was no longer effective and had an angiogram (which may also be referred to as an arteriogram) but it was obvious that it was totally calcified and it was the ancillaries to the toes that kept me from having the leg amputated. For another 10 years I just kept walking and exercising my legs and everything was okay until about 18 months ago. For the first time I noticed a sore on one of my toes. With a lot of walking that started to get better until last March. I was walking in one inch of snow in the temperature was about 35°. The next day it was determined my toes had gotten frostbitten. That was the start of the end. I had another angiogram to give my leg the best chance of healing and then was sent for hyperbaric oxygen therapy. For 2 hours every day for more than 2 months I had to lie in a chamber which forced pressured oxygen and doxycycline down my leg. That didn’t work and I went to a final try of wearing and arterial boot. It’s simulated walking and was supposed to be 86% effective specifically for diabetics trying to save their limb… after 5 months the pain was excruciating and I said I had done all I could and elected to have surgery.
In summary,
Due to years of high blood sugars many years ago, my veins and arteries in my legs in my whole body began to calcify at some point. I have also been told that for everyone age alone can cause a small amount of calcification.
my first attempt to save my leg was bypass surgery about 20 years ago.
my best attempt to save the leg was walking walking walking.
I also underwent three angiograms including stents to open up the arteries a bit.
Then came hyperbaric oxygen therapy for about 2 months.
then 5 months of wearing an arterial boot at home for about 2 hours a day.
Finally amputation which has believed all the pain I was feeling trying to save the leg.
That’s my story as I’m laying in a hospital bed waiting to go home hopefully today. I’m told that after therapy in the prosthetic my life will be as it has been. I’m positive I’ll get there.
Best of luck, Carl. There are some kind-hearted, highly competent prosthetitists, who are IMHO among the gems of the medical community. Work with them; they will help you. Take good care getting home.
