posted
after 2 years of treatment with abx and herbs, my main remaining problem is my head. I have headache all around back and front, scalp pain, throbbing pain, tender scalp... My head hurts all the time, it is worse sometimes than other times. Obviously my ears are affected too, and there is ringing in ears.
It just feels that my head / scalp is inflamed. I had lyme and bart. Maybe it is bart? Could it be autoimmune? The rest of body has gotten much better. VEGF blood test is still high.
has anybody successful treated the head issues?
I really hope that I can overcome this last problem to get to symptom free.
Posts: 99 | From NJ | Registered: Mar 2010
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Hi,
I think it's Bart too. I have similiar issues that you described. I always feel like I have a really tight turban wrapped around my head. My whole head feel so heavy. And of course the ears ringing just about drive me beserk!
Then I started Rifampin IV 16 days ago and I just noticed a significant improvement. I still have floaters but my head feels much lighter! At first I thought my head issues were Lyme, but now that I responded so well to Rifampin, I think it's actually Bart!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by scorpiogirl: Then I started Rifampin IV 16 days ago and I just noticed a significant improvement. I still have floaters but my head feels much lighter!
. If I remember right, Rifampin can reduce inflammation, and this is part of the reason people feel better when they take it.
I've been taking systemic enzymes to reduce inflammation, and it reduced the headaches and head pressure significantly.
If the headaches come back when you're done with Rifampin, you may want to look into systemic enzymes.
Posts: 6949 | From Lancaster, PA | Registered: Feb 2004
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posted
I have taken rifampin for 1 and 3 months alogn with Bactrim DS. feel good on it. relapsed after some months. can't seem to get ride of bart. Carol in PA, what systemic enzymes are you referring to? Where do I get it?
Posts: 99 | From NJ | Registered: Mar 2010
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Your pain is most likely referred pain, from muscle spazms somewhere on your skull (my guess would be all along the base of the skull). These knotty feeling spasms cause what it knows as referred pain - ie. the knot on the back near your right ear causes your right ear to feel painful, crunchy, and sends jaw pain shooting across your face, or over the top of your skull, or even down your arm.
Poke around with your knuckle - find any of these really hard painful spots?
If you do, it's a muscle spazm, caused by Magnesium Deficiency. Although you may have kicked your Lyme or Bart, you still need to fix the Magnesium Deficiency, as well as break up these spazms.
I swear by Trigger Point Injections. Muscle spazms do NOT go away on their own - in fact, they get worse as the blood flow stays constricted. I had as many as 7 shots at one time done in the back of my skull and shoulders.
It's a tiny needle with Lidocaine and water in it (think Novacaine). And the pain relief was immediate (because I went numb) and no longer could care less about a needle. Stick me wherever!!!
The initial effects stopped the referred pain that spreads elsewhere, and I'd be left with a little soreness at the sight of the injection. I had to go about every 10 days for a few series, as I was covered with muscle spazms. I also had to fix the CAUSE of the spazms, which is magnesium deficiency (fixed through IV and IM Magnesium).
I was fortunate to have an LLMD that does Trigger Point Injections, but also had them done at Pain Mgt Dr.
I have on occasion worked out a spazm on my own - using applied pressure (knuckle applied to the spot for as long and as hard as you can stand it.) Yes it hurts like heck, but think of it as a thumb war. Sooner or later, if you don't give, the spazm will. Then I would apply any type of lotion that has Arnica in it, and then apply heat.
Hope this helps.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I have had odd sensations at the crown of my scalp since I was bitten. It is sometimes pressure/crawling/tingling. It was actually this symptom that finally got me my diagnosis after 1 1/2 years of going to doctors. I felt stupid mentioning it as all docs thought I was a hypochondriac at this point and it seemed insignificant to other symptoms.
I feel that when this symptom is gone I will be well. Just a feeling I have. I think that it is infection as it goes away with abx. I did have a rash there at one time but dermatologists told me it was nothing. I realized later that it was an RMSF rash but it was difficult to see as it was under my hair.
I think Buhner herbs are going to be my ticket to healing this. I'll PM you if I ever get it to go way. I have been treating about 2 1/2 years.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Lymeinhell, thanks for your suggestions. I wish it were muscle spasm, but it doesn't feel like it. I will give magnesium a try. It feels like inflammation or even an infection. All around my scalp, sometimes, parts of my scalp (an inch in diameter) can be swollen like spongy, throbbing pain, painful to touch, it sometimes has a bump or two. Most of the days of months, the flareup quiets down. It is always there, but tolerable. A few days, a couple of times per month, i have flares. I become tired all over and need much more sleep. I sometimes have neuropathy in my limbs during that time. I just wonder what kind of infection I might have. I wish I could do a biopsy at the pain spot, and have a very smart doctor look at it under the microscope and finally tell me what I have: lyme, bart, parasite, barb, whatever, it may be. So I can treat it with the right meds. Right now, I am just treating myself in the dark. Has anyone had biopsy done?
Posts: 99 | From NJ | Registered: Mar 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Rainbowriver, Here is an article about enzymes.
There are a number of blends and brands. From what I understand, many LLMD's prescribe systemic enzymes along with antibiotics. I'm not on antibiotics, but I've been taking the enzymes to reduce inflammation and biofilm, so that my white blood cells can find and phage bacteria.
I wasn't sure what was going to happen when I first started them, but within two weeks of ramping up, I no longer woke up every day with a splitting headache.
It has also reduced body pain.
Fish oil also works well to reduce inflammation and pain.
Posts: 6949 | From Lancaster, PA | Registered: Feb 2004
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Yes, I had a biopsy done by my dermatologist. I believe that they tested for lyme and bart, both were negative, however it was sent to a lab that knows nothings about Lyme.
I believe mine is RMSF as I had the rash only on my scalp I also had a positive blood test for RMSF. It also responds to Babs meds and antiparasitics. Try taking some black walnut and see if you get a herx on your scalp. My most recent theory is that it is a parasite that carries RMSF as I have read in a medical journal.
I also have lumps. One well known LLMD told me that could be Babesia.
Posts: 2232 | From USA | Registered: Aug 2009
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