Not too reassuring, huh? Doesn't it seem odd the main attribute is that most people just had an infection/virus of some sort before this problem occurred indefinitely? My doctor said it it now an auto-immune response your body is creating.
Would you BELIEVE what one of the recommended treatments were? Low-dose doxycycline long-term. He said it sometimes helps with CNS inflammation in patients. Of course, other anti-depresant and psychotropic drugs are suggested to trial. However, the article states the condition is unresponsive to treatment so tough to be encouraged, right?
The specialist was not surprised when I said Biaxin had helped me with some symptoms before. The doctor also was not surprised about my previous diagnosis of Eosinophilic Esophagitis. I was told several other of their patients have this and it's auto-immune again most likely.
This doctor who works for a very conservative hospital also spoke highly of IgG food allergy blood testing. I was floored. He said even though conventional allergists hate this testing that some of his patients made remarkable improvements after eliminating foods that popped up positive on the IgG side. Even the famous author of From Fatigued to Fantastic (Dr. Teitelbaum) did not believe this type of food allergy testing had merit. It makes me wonder what the hell is going on with medicine.
Sometimes I feel like just banging my head against the wall.
I was also given a handout to a new Fibromyalgia clinic the facility is running for free monthly.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Yes, got this diagnosis from a neurologist who specializes in treating NDPH almost exclusively. His treatment... Minocycline and steriod injections directly into the spinal canal. Thankfully I didn't go that route.
Posts: 219 | From pacific nw | Registered: Jun 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yeah, I agree no steroids for me. He seemed perplexed when I told him I have zero interest in steroids. I don't understand why a doctor can't understand the risk, especially given they admit it's usually caused by / triggered by an infection of sorts. What the hell logic is this?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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I have never heard of NDPH, but having a SEVERE headache and SEVERE stiff neck every day for over a year is what finally led me to find LymeNet about 3 months ago and to FINALLY (after more than 10 years, get proper treatment for my lyme disease).
Before it occurred to me that this was another bout of lyme, I saw a neurologist that specilized in headaches. He prescribed Topiramate (as described in the article) and Imitrex. These drugs worked, but the Topiramate at 200 mg per day caused my lyme symptoms to EXPLODE! That is what FINALLY caused me to understand that lyme was causing my headaches and led me to researching lyme on the internet. Thank God that I found this site and my LLMD!
I am now on day 69 of the Cowden Protocol. I have now had several periods without a headache. If I don't have a headache today, this will be the 7th day in a row without a headache - the longest headache free period I've had in a LONG time - probably years!!!
I am still taking 50 mg of Topiramate at bedtime (and hoping to be off that soon). I take an Imitrex when I have a severe headache. My LLMD put me on FeverFew for my headaches and I think that is really helping and will allow me to be off all the Topiramate and Imitrex soon.
Posts: 177 | From Ohio | Registered: Aug 2012
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Yes, I got the exact same diagnosis from a neurologist, before I finally got the Lyme and co diagnosis. However, for what it is worth, I have been able to manage my headaches by going off of gluten and dairy. As long as I dont touch either, I am ok, but if I do the headache comes back with a vengance.
Good Luck
Posts: 67 | From Fredericksburg, VA USA | Registered: Jun 2005
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seekhelp
Frequent Contributor (5K+ posts)
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posted
I have been off of gluten and dairy since August 2008. I'm starting to wonder if I'm not really off it. Hmmm...
This sounds like a popular diagnosis for us Lyme infected individuals. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I've been off gluten, dary and sugar for over a year, no change in the horrible head and neck pressure pain and dizziness one bit. Confident it's not related in my case at all, it's all infection.
Posts: 219 | From pacific nw | Registered: Jun 2009
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I've been off gluten, dary and sugar for over a year, no change in the horrible head and neck pressure pain and dizziness one bit. Confident it's not related in my case at all, it's all infection.
Posts: 219 | From pacific nw | Registered: Jun 2009
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seekhelp
Frequent Contributor (5K+ posts)
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I think it's infection with me as well. It sucks so much.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I too had an awful headache every day. I tried taking Wobenzym, a systemic enzyme, and within two weeks I no longer woke up every day with a splitting headache. I ramped up to 12 tablets daily, on an empty stomach.
Systemic enzymes reduce inflammation. I had tried other enzymes, but I think the dose wasn't high enough.
This also reduced my body and joint pain. When I took a good quality fish oil, the headaches improved a bit more.
Then the brand I was buying changed suppliers, and it didn't work as well. I stopped the fish oil and a year later tried another brand with very high EPA. Hint -- aim for 2000 mg of EPA daily.
Quality fish oil reduces inflammation, which reduces pain. When I stop the enzymes or the fish oil, I have increased pain.
I eat pretty much whatever I want, including gluten, dairy and sugar. I do seem to have a problem with some fruits and vegetables that "go right through" me. If anyone has suggestions for that, let me know.
If you have continuous headaches, try taking supplements that will reduce inflammation. Systemic enzymes Fish oil
Oh, and don't forget magnesium. Low magnesium can cause headaches and migraines.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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Sorry to butt in, do systemic enzymes in large doses cause one's blood to be too thin?
Posts: 394 | From Southeast | Registered: Oct 2012
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Carol in PA
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posted
Systemic enzymes reduce the amount of fibrin in the blood. Excess fibrin is a result of the immune system responding to a chronic, bodywide infection, such as Lyme.
The enzyme tablets are coated, so that they do not dissolve in the stomach. You take them on an empty stomach and wait half an hour, so that they pass into the small intestine. I usually drink a glass of iced tea and read, to distract myself from feeling hungry.
The tablets dissolve in the intestines, and about 25% of the enzymes are absorbed. When I was reading articles about Wobenzym, I saw that physicians in Europe would prescribe large doses, like 30 tablets at a time, to "force the therapeutic response."
If you start out with a large dose, you may have digestive upset, so ramp up over several days.
Excess fibrin in the bloodstream means the flow through the capillaries is slower, and the cells do not get enough oxygen. This causes headaches, pain, and fatigue.
It can also cause digestive problems like Irritable Bowel Syndrome.
I don't know how large the dose would have to be to cause a problem. From what I read, it didn't sound like they were too worried about that, and didn't have patients with complications.
You could google for Wobenzym and hypercoagulation to find information. Of course, there are other enzyme blends too, but Wobenzym has been used for many years in Europe, so there are more articles about it.
LLMD's often prescribe systemic enzymes along with antibiotics, as stripping fibrin from the biofilm helps the antibiotics to work better.
It also helps our white blood cells to work better, as they can find the bacteria to phage (eat) them.
I was so excited to find a way to reduce the continuous severe headache. I still have problems, but it makes life so much better.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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