I did hyperbaric oxygen therapy about 2 months ago and I am still dealing with the terrible reaction I had to the so-called treatment. I did 29 dives, and had to stop because it got so bad. At first, I had recognizable herx symptoms - facial spasming, muscle twitching, extreme pressure headaches - these were fine because they seemed like normal herx reactions. But then I started experiencing extremely concerning symptoms.
I started feeling extremely violent pushing and piercing movements in my brain all the time. Sometimes it feels like fingers pushing very forcefully through my brain and sometimes it feels like thin needles or wires moving sharply and painfully, but there is always this violent digging motion in my head. The more I move or talk or chew food, the harder it seems to dig in my brain until it becomes unbearable. So now I have to take only a few steps or a few bites at a time so that I am basically incapacitated.
I thought these might have been herx symptoms at first, but then I went off antibiotics for over 2 weeks...the antibiotics were entirely out of my system and this digging sensation only got worse, so now I know it was not a herx. I don't know if the HBOT pushed the bacteria into new tissues in my brain, but I have read that some doctors believe HBOT does this. Now I am back on antibiotics, searching for ways to fix this terrible situation, and so far I have been unsuccessful. Any ideas what might have happened here or suggestions for what I should do?
Posted by feelfit (Member # 12770) on :
Can only tell you that i lost my ability to swallow 75% of the time after HBOT. Never ever had that symptom before...
It took 3 months before i could eat solid food and over a year later i still have occ. difficulty swallowing but the worst has subsided.
Hopefully, this will happen with your brain sensations they will lessen over time.....
Keep treating. with abx.
Posted by maritzap (Member # 11146) on :
I have heard that HBO should not be used if you have babesia since that organism loves oxygen.
Not sure if this is true, but it does make some sense.
My daughter did hbo for her RSD diagnosis prior to her lyme diagnosis, and it did not help at all, but made her headaches worse.
She had clinical diagnosis for babesia but did not test positive for it several months later.
Posted by sammy (Member # 13952) on :
What does your LLMD and the doctor running the hyperbaric center think of these symptoms? I've never heard of HBOT causing brain injury.
I have been told that a herx can last for at least 12wks after completing your last hyperbaric treatment. So you may still be experiencing a herx even if it is a very unusual one.
If I had experienced what you've described I would have stopped the HBOT also. I wonder if it might help to consult with a Naturopath (ND) for help with detox and antioxidant therapy.
I also can't help but wonder if you were being treated well enough for coinfections? HBOT is only effective in treating Lyme, it does not reduce the Babesia or Bartonella load. My coinfections have been flaring out of control since I completed HBOT.
Sorry I don't have better answers for you. I hope that you will be able to get some help and find relief from your symptoms soon.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by maritzap: I have heard that HBO should not be used if you have babesia since that organism loves oxygen.
Not sure if this is true, but it does make some sense.
I've heard the same thing.
I do hope these symptoms subside for you!! Anything you can do to detox should help.
Posted by mutiny06 (Member # 28362) on :
My LLMD, Dr. C, has been very good in the past, but he does not have any idea what these symptoms are that the HBOT has created. He is unwilling to offer an explanation for it and basically unwilling to get involved with me any more because it has become so complicated. I am now in the process of searching for a new LLMD with a more aggressive approach and some knowledge to offer on the issue - maybe Dr. H.
I have considered that maybe it is babesia, since some people say HBOT ignites babs symptoms, but none of my symptoms line up with the list of babs symptoms. I've been on Mepron and Zith before, so I'm not sure what else to do to treat the potential of babs. Are there better treatments for babesia? When you guys say "detox," what specific things would you recommend? I know there are a bunch of different detox methods, but I haven't done any of them before, so are there a few basic ones that I should know?
Posted by sammy (Member # 13952) on :
Dr. H in NY does not regularly use HBOT for his patients. When I was interested in trying HBOT he referred me to Chico Hyperbaric clinic in California. (you can google them)
I ended up finding a clinic here in Cinci OH so I did not go to Cali for HBOT. But I did call and talk with the staff there at Chico to make sure my Ohio doc was treating me properly. I asked them a bunch of Lyme and HBOT questions and they were very helpful. My local HBOT center was not experienced in treating Lyme but the Chico clinic mainly treats Lyme.
The severe pressure headaches are what made me think Babesia. This is one of my key Babesia symptoms. So you may ask your doc to put you back on Mepron and Zith, or Malarone, or Alinia. There are other options but those seem to be the most common treatments for Babesia right now.
For detox I was told to use zeolite (I use the NCD brand) to bind and remove the metals that would be released during HBOT. I still take it daily for maintenance. I also used Resveratrol for antioxidant support. NAC for antioxidant brain and liver support. Pekana detox for Lymph, kidney, and liver support.
Your LLMD should not give up on you because you are having complications. Maybe try giving him a call or go see him in person rather than trying to convey your message through the nurse to him.
Also, if you haven't already, check out WildCondor's site about HBOT: http://www.wildcondor.com/hyperbaric.html She lists her email on the website so you can contact her with questions too. She is very knowledgable and caring.
Posted by kimmie (Member # 25547) on :
I too would think babesia...
Posted by CD57 (Member # 11749) on :
PM me and I will see if I can put you in touch with someone who might be able to help
Posted by GiGi (Member # 259) on :
If you have not done a serious heavy metal detox, HBOT will set the toxins in motion. If you do not have any agent on board to bind the metal toxins (as well as chemicals and plastics), they are recirculated and reabsorbed. Years ago following HBOT, I also thought it was Babesia.
No, it was the toxic metals that I was still holding because I had turned allergic to them. Allergie Immun corrects the dysregulations/allergies and metal release can happen. Until that happens, the immune system does not recognize these neurotoxins and will simply store them in any body compartment that is convenient with ever increasing burden as we get a year older.
HBOT was a lesson learned for me that I would not recommend to anyone who is metal and chemical toxic. That is most everyone living on this earth today and only because of that can Lyme get a foothold.
I got in touch with WildCondor since she is basically the expert on HBOT. Even she expressed concern at these symptoms, saying that I should have stopped the HBOT immediately when I started feeling these digging and piercing sensations in my brain.
When I told her that my LLMD, Dr. C, has basically backed away from treating me because my case has become too complicated, she said she was not surprised because Dr. C is notorious for giving up on hard cases. He usually uses too low doses and the wrong meds in the wrong order. This is quite true. All he is giving me right now is Biaxin 500 mg 2x daily. This is obviously insufficient for the extreme symptoms that I have developed here. He has given me more medications in the past - I was on IV Rocephin, Biaxin, and Flagyl before all this happened, but now he is unwilling to use aggressive or creative treatment when I need it the most.
WildCondor suggested that I see a more aggressive and knowledgeable LLMD like Dr. H and this is what I plan to do. Unfortunately, the reason I went to Dr. C is that he takes insurance. The doctors that I really need to be seeing right now like Dr. H don't take insurance and I don't have the money for it.
So basically I am in limbo here. Can't get the right treatment and who knows when I will be able to afford to go to a better LLMD. Meanwhile the digging and piercing is unbearable and who knows if it is causing damage in my brain. Does anybody have a suggestion for what I should do in the meantime before I can see another LLMD or ideas for what antibiotics I should try to get from Dr. C? Is there any way to work out with your insurance company to pay for the consultation or do you always have to pay out of pocket then get reimbursed?
Posted by sammy (Member # 13952) on :
mutiny, there have got to be a few good LLMDs that take insurance. Post your request in the seeking doctor section. There might even be an option close to your home. You won't know unless you ask.
My insurance company will not reimburse for Dr.H appts because he is considered out of network. You could contact your insurance company to find out their specific rules for reimbursement. They might be willing to reimburse a small amount, it won't be close what you have to pay out of pocket. They might also have restrictions on reimbursements for phone consults/follow-ups. Mine will not pay for these even if the provider is in-network. So give your ins company a call to find out what you can.
In the mean time, try to get Dr.C or your local PCP to see you and try to help treat your symptoms at least. It is flat out negligence if he refuses to help. It makes me so mad when doctors do this kind of stuff. Like ignoring your problem is going to magically make it better. If that were true we would never need to see a doctor in the first place, we would just wait for our bodies to magically cure themselves!
What meds or treatment combos have helped you in the past? You could specifically request to go back on one of those. Or read up on Dr. B's guidelines, request a med combo that hits Lyme, Babesia, and Bartonella. Maybe something like Bicillin LA, Mepron and Zith.
Remember though, these are just my thoughts and opinions, I am not a doctor.
Posted by LifeIsLyme (Member # 29187) on :
You guys might want to try MILD hyperbarics instead of the regular HBOT. I hear horrible things about the physician grade hyperbarics, but I own a portable home use mild hyperbaric and it has saved my life with my lyme disease! Huge gains have been made in the few short weeks.
**edited out solicitations**
[ 11-14-2010, 03:28 PM: Message edited by: Lymetoo ]
Posted by lou (Member # 81) on :
Any chance of getting more babesia testing? If there is any chance of babesia, HBOT is a mistake.
And as for doctors giving up on difficult cases.....not all doctors who treat lyme have the same knowledge and experience. When I first started treating, the doctor told me he was a second tier doc. This meant that he was not a beginner and could take on later stage cases (tier one is a beginner, good for new cases and to get started on later cases). But when the going got tough, you needed a third tier doc. The most experienced and willing to take the worst problems.
So, maybe don't expect every doc to be able to do everything. If he is backing away, then you need to move on without recriminations.
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