Stabbing Scalp

[Judy0611]

Hi Everyone, I have a severe burning scalp as if someone is pouring an irritant directly on the crown of my head. I also have a feeling of hot pokers being stabbed into my crown. There a sore spots that are the size of coins that burn and are very sore and often times even though it seems that no one else can see them, I feel with my fingers what seems to be sore rough spots. From time to time I will also have sharp electric type pain on my head too. I have had this problem since April of 2012. Can anyone relate to this?
Thanks

[JackieCalifornia]

Maybe your LLMD can suggest the name of one or more 'enlightened' docs that are in your plan.  The LLMDs often know who is friendly in the invisible Lyme army.

Good for you for pursuing this, despite the hassle.  It's definitely worth it.

Keep us posted!  We're rooting for you --

[Judy0611]

Thank You so much.  The LLMD I see said that it is Bartonella. That Bartonella causes all kinds of neuro problems.  I guess I thought that after being treated for sometime now that my pain would be GONE! I am patiently waitng for him to add another antibiotic to the regime I am on. I need a new primary as the one I have does not understand co-infections nor is he interested in learning and helping by being supportive of me seeing my LLMD. He just thinks it is something that time will take care of. Personally, he is a  jerk! The only reason I can't change at this point is my Medicare insurance plan. The Primaries that can support me are not in network for me. I have to wait until Jan. 1 to see the one I really need and want to see who are connected with my LLMD. I went out of network to see the LLMD and now my insurance company doesn't want to pay the bills so I had to file an appeal. I asked my Primary jerk of a Dr. to give me a referral to the LLMD and he wouldn't!!  

[mkh9]

Very glad to hear your MRI was normal. Neuropathies don't often show up on an MRI. But is always good to rule out other problems. As wonko said perhaps with antibiotic treatment your scalp symptoms will resolve. I hope so. Glad you have a good LLMD. Don't know if anyone here has a topical or other meds that would help with the nerve pain. Lyrica and Neurontin are two common drugs used for neuropathic pain and lamitcal. They all have their side effects.  It depends on whether you are willing to try one and see how you feel.
mkh9

[wonko]

I was treated with oral antibiotics and diagnosed clinically with Lyme and Bartonella.  I had a host of neuro symptoms, not just the scalp pain, and slowly but surely those issues resolved with treatment from my LLMD.

Glad your MRI was clear, but that doesn't mean your symptoms are very real.  Lots of Lyme patients have normal MRIs despite debilitating neuro symptoms.  But a clean MRI helps rule out MS so it is good to have done.

[mojogal]

I am on the same meds for my Bartonella, rifampin and Zithromax. We added minocycline because Burascano says it can help Bart's and Lyme.

[Judy0611]

Hello mkh9, My primary called me with the results of the MRI and said that it is normal for a person of my age and  nothing wrong with my brain.! Except to me this pain is driving me crazy!! I had copies of the MRI and report sent to my LLMD by snail mail and he preobaly won't get them until the end of the week. I am really grateful to my LLMD as he is the only DR. I have seen in over a year that believes the severity of the pain and is treating me aggressively.

[Judy0611]

Jackie, I am on Rifampin and Azithromycin. He diagnosised me with Bartonella.

[Judy0611]

Hello wonko, Thank you for responding to me but I am wondering what did you mean by treatment. What kind of treatment please?
Thanks

[mojogal]

Just want to mention that from my own personal experience, my bite was over 20 years old. When I was stuck in the land where Lyme doesn't exist (TX) and my nurse friend knew I had Lyme and Bart's lesions so she had me ask my GP for Doxy because it helps skin problems. On a very low dose of 200mg a day, I herxed like crazy. I was on a traditional 4 week cycle and everything. So it did major good things for me as a starting point.  I just think every person is different, so while doxy did work for me on an old bite, it may not work for others.

[mkh9]

Hi Judy0611,
Let us know how your MRI goes. Hope it helps to figure out what is going on. . Although, it may not show up on an MRI if it is a neuropathy. They may have to just treat the symptoms.
take care,
mkh9

[JackieCalifornia]

I'm sorry to hear your doc's treatment approach hasn't yet worked.

What does the doc say about the situation?  I would consider having a pointed conversation with him about the fact that it doesn't seem to be working and why that might be.

And not all LLMDs are created equal .... they are all human and overlook things or get fixed points of view just like other humans.  If the doc can't give a rationale for the approach s/he is using, then I'd consider quietly getting a second opinion.

What has the doc diagnosed you with?  Lyme and/or which co-infections?  

What antibiotic(s) are you on?  If it's only doxycycline, it has its limitations against Lyme unless given almost immediately after getting infected, and many of us don't know when we were infected.  Sometimes a tick and a rash are seen, but it may a re-infection on top of an old, unnoticed one, so it's really an OLD infection, and those do not, from my reading, usually respond well to doxy for reasons specific to the way doxy works and the natural barriers the Lyme bacteria have to that approach.

Doxy is the traditional treatment for Lyme, but recent research in the last few years has shown that due to the way Lyme can conceal itself in the body makes doxy less effective and sometimes completely ineffective.

If you need help finding another LLMD for quiet second opinion, let us know -- and in any event, keep us posted on how you do and what the doc says, okay?  Hope you feel better very soon -- best to you!  J.

[mojogal]

I had something similar when I first got sick with Lyme however it did go away.

[wonko]

I've had this problem, or something that I would describe in a similar way.  My scalp at times got so sensitive that even the movement of my hair caused sharp pain.

Like a lot of my symptoms, it slowly cleared up with treatment.  

I did once notice this particular problem worsen suddenly after drinking soy milk, making me wonder if there was also an allergy component to it?  I don't try soy milk anymore, but I know I get soy in my diet.  But maybe I have only a slight allergy that was set off at that time.

Whatever it is, I hope that you find relief.

[Judy0611]

Hi Jackie, I have been seeing an LLMD who is treating me with antibiotics. While it sems to be better than a last year at this time, it continues. I seems to have episodes where as  am worse at times than other times. Just when I think it is going away, BAM, I get a severe attack which really makes me wonder if the antibiotics are working or not. I had reached a point that I finally made an appointment to see a dermatologist but it is taking me 4 months to get an appointment and that won't happen til August. I am going to rid the post that you suggested and see if I can get some answers. Thank You Jackie!

[Judy0611]

Thank You mkh9.  My primary, after me asking him for 6 months, finally did and MRI last Friday and hopefully I will get the results today.

[JackieCalifornia]

http://www.medhelp.org/posts/Lyme-Disease/Scalp-Symptom/show/958769

The link above popped up when I searched the webpage we are on (you and I) right now at MedHelp.  There are a number of posters there describing their own experience with what sounds similar to your symptoms, so you might take a look and see.  The post is called 'Scalp symptoms?' and it's from a couple of years ago, but might give you some ideas and some comfort to know you're not the first to have this.

Also, if you search (I use google) for

                    lyme scalp

you will get lots of hits on this topic.  I have heard of others having similar symptoms, but can't think at the moment who it might have been.  

What does your doc say?  If you do not have a Lyme doc, then I would start with a dermatologist, perhaps.  They can be very wise in such things.

Please let us know how you do, and what you do ... your experience could help someone else here sometime too.

Others here may have more ideas, so check back in a day or two, okay?  Take care --

[mkh9]

It sounds neurological. I would see a doctor.