posted
I am a new member here. I joined the forum because I have developed extremely scary symptoms and I am wondering if anyone has had anything similar/what they did about it. I did HBOT treatments for the first time 2 months ago (29 dives) and ever since I have had the most concerning symptoms I've ever had. It feels like I can feel masses of spirochetes digging in my brain at all times, very forcefully and very violently. They are always moving, pushing extremely hard into different areas of my brain. Sometimes it feels like they move in large clumps, like fingers pushing through my brain, and sometimes it feels like very thin wires or needles which are sharp and painful. Before the hyperbaric treatment, I had normal lyme symptoms - fatigue, brain fog, pressure headache - but this is something entirely different. I have tried extremely hard to find someone matching my new symptoms, but I have not been able to yet. People describe "pins and needles" in their body, but never pins and needles constantly running through and piercing their brain like I have. The closest descriptions to my symptoms that I have found have been people who say they have a "creepy crawlie" sensation in their brain, but the movement that I feel is much more violent than what they describe - it is a pronounced digging sensation.
I suspect that what happened is the HBOT pushed the spirochetes into new tissues. I know many people will say that it is a herx reaction brought on by the HBOT, but I am convinced that it is not. This is because my LLMD had me go off antibiotics completely for over 2 weeks (amoxicillin and flagyl) so they were entirely out of my system, and yet the digging sensation persisted and even got worse.
Since these symptoms have set in, my cognitive abilities have degraded significantly - I find myself switching letters in words, mixing up words, and able to think less and less every day. While I have had "brain fog" before, I have never had such concerning cognitive problems as these, and I cannot help thinking that the painful digging and piercing sensations I have in my brain are causing damage which are creating this steep degrading of brain function. Furthermore, the digging seems to be affected by the activity of my body. The more I move, or talk, or even chew food, the harder it seems to dig into my brain, so that now I am incapicated on my couch, barely able to eat. Has anyone had this?
Even though I think that HBOT brought on this change in my symptoms, it is not important to me if the people responding have done HBOT or not. More than anything, I am looking to see if people have had symptoms similar to these and what they did about it (particular antibiotics, treatments, herbs, etc.). I feel like the only way to get the spirochetes out of these tissues and stop them from moving and digging all the time is to kill them completely - but we all know that's not going to happen, so I really have no idea what to do. Thank you, and sorry for the long post, but I am just very concerned.
Posts: 9 | From Connecticut | Registered: Sep 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I have read of people believing they could feel spirochetes traveling through their bodies and even coming out of their skin, so this has happened to other people- but it is not real because they are microscopic and too small to feel individually. Whatever is happening to your brain is a symptom, like a headache or brain fog would be. I have not had a similar symptom but I have had severe brain dysfunction.
I have had other symptoms such as tingling, prickeling and twitching which can bother you a lot if you let it - and which would drive a person crazy if you imagined them to be crawling bugs. So don't.
Treatment with antibiotics helped me. You may be experiencing symptoms of co-infections such as bartonella which causes anxiety, obsessiveness and other psychological problems.
Bartonella causes neurological problems out of proportion to other physical symptoms. It causes anxiety. HBOT is not effective against it. It could be when you attacked your lyme it allowed bartonella to surface. You should look at symptoms of co-infections to see if this is happening to you.
Remind yourself that this is just part of the journey of recovery. Hopefully you are seeing a good LLMD that will get you back on antibiotics and consider co infections like bartonella. Very few people are only infected with lyme.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I totally agree with what Nefferdun says.
I have not had the exact symptom you are speaking of; but have had many other neuro symptoms. This is what I would classify your symptom as......neurological!
From experience I can tell you that I became obsessed over lyme symptoms and it was discovered that the lyme had triggered a mood disorder, causing an imbalance of my brain chemistry. This is very common with LD.
When this happens you need to treat the mental side of it. It will make a huge difference in how you feel. I am so much better after starting a mood stabilizer. I also take Xanax to control the anxiety. I no longer constantly think about lyme symptoms.
Oh and I do have a feeling that I describe as a vibrational type feeling and when I think about it, it sort of feels like spirochetes drilling into my tissues. I think it is related to nerves being irritated or something along those lines. I would guess that your symptom could possibly be something along those lines.
I hope it gets better for you soon!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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onbam
Unregistered
posted
Although you clearly have brain involvement from Lyme, the brain does not actually sense pain, so the sensation you describe is probably neuropathy.
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posted
Obviously I do not know if the sensations I am having are "the spirochetes moving" - that is definitely a visualization that might not be true. It could have something to do with nerves or something like that as people are suggesting. I am quite sure that it is a physical symptom (although definitely an uncommon one...this, I think, is why many people try to pin it on psychological factors). The reason why I am confident it is physical is that taking antibiotics prompts a distinct change in the type of "movement" or "digging" that I feel. Yes, onbam, people have told me that the brain cannot actually sense physical things...this is why the sensation is so odd. I was thinking of how it could be neuropathy - that means nerve damage right? But I thought there aren't any nerves that control sensation in the brain, so I wonder how that is possible. Many people describe symptoms like tingling or crawling on their skin or in their body - this makes sense because there are nerves there - but my symptom is more like a violent pushing in my brain, so it is very difficult to figure it out. I hope someone comes along who has experienced something similar - I am at a loss of what to do.
Posts: 9 | From Connecticut | Registered: Sep 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I've heard that HBOT is contraindicated in Babesia infection. Some say it simply doesn't kill the organism. Others say that Babesia thrives in oxygen and symptoms can become much worse.
So you could be having a Babesia flare. Often, when the level of infection of one pathogen is reduced, the symptoms that are typical of another infection will worsen. This always happens with me. So maybe you killed off some Borrelia and the Babesia is out to play.
Symptoms that relate to Babesia are icepick headaches, stabbing headaches, vertex and occipital headaches, dizziness, loss of balance, "I'm on a rocking boat," "my brain is moving around in my skull," neck and back pain with meningeal swelling, poor cognitive function, brain fog, shortness of breath/air hunger, night sweats, day sweats, stinky sweats, heart palpitations, hip pain, extreme fatigue.
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I have had what you are describing and when I startd antiparastic herbs and salt/c, bumbs started to push through my scalp. the bumps formed a scab and if I picked it, a parasite would emerge.
Continuous use of antiparasitics are what saved my life. Flushing the dieoff out from the colon with warm water enemas and doing salt/c also helped get rid of them.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
I have been tested for babesia before and it came back negative, but I know that doesn't really mean anything. The babesia symptoms don't really match up with mine, but the fact that HBOT ignited them probably means I should look into babesia treatment. I've been on Mepron and Zith before without huge results, so not sure where to go from there.
I will definitely look into anti-parasitics, I'm glad to hear that someone has had this strong pushing sensation deep in their brain, although I'm not thrilled at the prospect of parasites. I wonder why someone with parasites would be able to feel them pushing through their brain and someone with spirochetes from Bb wouldn't be able to. Theoretically you shouldn't be able to feel anything in your brain. Also, I wonder why the HBOT would have brought on these sensations - not that it really matters, I'm more interested in the treatment than the reason.
Posts: 9 | From Connecticut | Registered: Sep 2010
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Are you familiar with the "Buhner Protocol"? It is an herbal protocol to treat Lyme and co-infections.
Stephen Buhner feels that the herb "Knotweed" is one the best for neurological Lyme, as it shuts down the pathways that Lyme spirochetes use to cause inflammation, which they thrive in. He claims the herb helps with all kinds of neurological problems from Lyme.
His book is called "Healing Lyme" by Stephen Buhner.
You can find him on the webstite "Planet Thrive".
Posts: 1358 | From Midwest | Registered: Apr 2009
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