posted
Does anyone else experience almost constant head pressure at the top of the head? With random pains occurring every now and then? My neck also feels stiff and achy at time, making want to crack my neck. For the past 6 months, this has been my main symptom, with 20+ odd and weird symptoms.
For the past 2 months I have been on 100 mg of doxy twice a day. Two weeks ago I finally saw my LLMD. She ordered new blood work from IGENEX for Lyme and co-infections. She now has me on 200 mg twice a day. For the first time this past weekend, I am pretty sure I experienced my first herx? I felt like I was having the flu, but with no flu symptoms, if that makes any sense. I also has a mild sore throat. I felt awful.. very fatigued and tired.
As of right now all I know is that... I tested positive for IgM 23, IgG 30, and IgG 41.. All of my other symptoms have lessened since being on doxy, except my almost constant headaches and head pressure and heart pain/fatigue. I was around mold in my yoga studio/home for 8 months last year before my symptoms started. I remember finding two ticks in my bed this past january, a month before my symptoms started. Never any rash.
Basically what I'm wondering is.. has anyone out there had my symptoms? This weird pressure in your head with head pains? And also, if I did have antibody for those strands, can I finally have a peace of mind that this is Lyme and not mold? I dont go back to the LLMD for another 2 weeks. The thing that keeps me really thinking its Lyme is testing positive for those strands and that my symptoms hit me HEAD ON hard. They didnt build up. Everything just started happening with me feeling pretty ill. I'm also not allergic to mold... but I read that apparently that doesnt matter. Right now... i just feel blah, tired, headache/pressure...
Posts: 15 | From Baltimore, MD | Registered: Sep 2012
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
The head pressure is from babs...at least that is how it is with me.
I started treatment based on band 23 coming back positive. 23 is lyme specific.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
I have had those symptoms a lot. They leave you in a terrible brain fog, not to speak of the anxiety from the pain. Mine has at least temporarily lifted a bit four months into treatment. When i was on doxy it didn't help these symptoms at all. I moved onto cefpomoxime and flagyl.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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posted
Thanks for the replies. Yes I've read a lot on Babesia and head pressure is one of the major symptoms. My LLMD is doing a whole panel test for that and some others. I have noticed that the doxycycline sometimes makes the pressure worse. Adrographis also makes the pressure more intense... only 2 more weeks until my medication is switched when I see my LLMD.
Any ideas what she will put me on? I know she definitely already thinks I have Babesia.. what would typically be used to treat that? If this head pressure would just go away I would be so happy...
Posts: 15 | From Baltimore, MD | Registered: Sep 2012
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Rare side effect of doxy is raised intracranial pressure. Not common but can happen.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I have had lots of head pressure with this illness. When I was on rifampin, I did not notice much happening with my head symptoms, but once starting babesia treatment (mepron and biaxin with omnicef), I feel all kinds of things changing up there.
I still have some pressure, but it literally feels like fluid is moving in there and I have new bug crawling sensations and hot spots.
I know this is probably not reassuring to you, but it does tell me that it is affecting something in my head. At least I hope so!
I think I may have had babesia all along and not bart. You can test negative for these and still have. I did test positive for anaplasmosis and RMSF.
Good luck and I hope your head pressure gets better. One thing that you might want to try is lithium orotate, that can be bought through Iherb.com and probably some others. You only need small doses - 5 mg 3 x day helped me.
Also, curcumin is a great herbal supplement that is supposed to reduce brain inflammation. I hope they both help.
Posts: 2386 | From New England | Registered: Aug 2011
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Headaches and often head pressure have been my constant symptoms since being diagnosed. The headaches move all over, but sometimes the top of my head is so tender, that it hurts to touch my hair.
I have been in treatment for 3 years and am just starting to see some positive signs and reduction in symptoms.
Hope you find some relief soon.
Posts: 164 | From California | Registered: Aug 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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gmb
Unregistered
posted
I agree with Babs and head pressure.
I'm on my second round fight with Babs since March 2012
My firts round lasted May 2011 thru Sept 2011. Symptons worsened during treatment then improved after 10 weeks then plateaued and switch to a Bart protocol.
When spontaneous bruise marks from bustring red blood cells reappered in February 2012 it was back to Mepron hell. I'm just starting to feel better with less head pressure, better memory and focus, and less fatigue.
Still have a ways to go with Babs I fear.
Currently on IV Rocephin, Zith, Mepron double dose (2 tsp x twice/day) and Bactrim DS.
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
MY opinion is to GIVE UP on the "doxy" as the chance of any real effect it would have had on the 'ketes is loooong past... due to the inadequate dosing you've been on these last 2 months. It's so sad so many (including me) lose out on the punch oral doxycycline can give- to combat B.B. infection- due to the drug levels recommended in those draconian IDSA guidelines for Lyme treatment... which are STILL in place, BTW!
Not to say you should argue w/ your [new] LLMD over your 1st protocol, but *I* feel it would be much more effective to switch over to an "ILADS level" of something like Ceftin or amoxicillun.
Bear in mind- you'll need to build your dosing up with any new antibiotic that you start on to avoid problems. You could end up "hitting the dashboard" if you crank right up to "full strength" dosing & you don't want to end up in the E.R... where they really won't know what to do with you anyhow.
ALSO... As you've been on this inadequate dosing of "doxy" (in the opinion of *most* familiar with the treatment of Lyme anyhow), you likely have a backlog of the "L-form" of the borrelia throughout your body now.
This is because the Lyme 'ketes can morph into other forms to avoid the effects of the antibiotic if exposed at lower levels; serum (blood) levels that are considered "bacteriostatic" rather than "bacteriocidal". Consequently, you really should add a "cyst-buster"- like Flagyl- into your protocol to deal with these other forms.
As far as your "1st herx"... if you DO have late-stage (disseminated) Lyme, you likey already *had* your first herx... back ~2 months ago. And, yes, it can leave you very fatigued & feeling like S#!%. Part of getting well, unfortunately.
Good luck with your new LLMD & give her a chance!
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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