posted
I have Lyme disease and Bartonella Henselae (plus suspected Babeisa due to extreme herxing on artemisinin)
Currently getting really bad swelling such that it feels like it is cutting off blood flow to my brain and eyes. When I lay down I quickly start to feel a bit better like the blood is getting there a bit easier though the swelling is still there. I need to get some abx in me, but it seems like I can't take anything because of the results as described below:
I took Levaquin a few months before being diagnosed for something unrelated for 4 days and got extreme tendon pain and could barely walk, but fully recovered in about a month.
Started treatment with LLMD with Biaxin felt much better with all symptoms rather quickly, but could not sleep a wink on it. Tried my best to manage with this, but there is only so long you can go without sleeping at all. Tried all sorts of things in terms of timing of the dosage and smaller dosages, XL version instead of regular, and different things to get me to sleep with no luck.
Switched to Zithromax because of this. Similar result of feeling better with this, however after about 10 days of this I started to get extreme inner ear pain, swelling and ringing. Gave it a break for a while and tried again only to have the same effect when taking 1/2 a 250mg pill.
Can't take doxy and tetracycline because even micro dosages cause such bad brain/eye swelling and pressure that I can not function and it gets to be really dangerous for my safety. With this I am talking like 1/4 of a 50mg doxy capsule. A dosage that is so small it shouldn't have any effect on me. Tried this twice, once on my own, and once several months later with direction of LLMD with same result. Same result with tetracycline.
Tried bactrim about a month after the zithromax incident. Two days of 1/4 a tablet for 2 days, 3rd day I moved to 1/2 a tablet started to kill my ears again. Extreme pain, swelling, and ringing again.
Then I had skin scratch testing done from penicillin, cefuroxime, and ciprofloxacin. Only got a rash from the cipro. Started penicillin and 4 hours later ears are acting up again.
All these ear effects seem permanent as they did decrease a bit over time, but not fully. Got checked by a very good ENT who found no hearing damage or anything that they thought they could specifically help me with, except for drops to dull the pain.
I think if I continue with the abx I will cause even more permanent damage, but over the last two days the swelling is so bad that I am totally not functional.
Posts: 526 | From NJ | Registered: May 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I am sort of confused as to what is swollen. Is it your brain or your ears?
Ear problems are very common with LD. In the beginning of my illness I had ear pain all the time. I think the spirochetes like the ears.
Is it possible that the increase in ear pain is a herxheimer reaction?
Not sure that brain swelling is neccessarily the culprit to the ear pain though. Ear and eye pain is a common finding in LD.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
brain, eyes and ears. Though the ears only get bad from meds and I think it is ototoxcity and not herxing otherwise I would plow through it and ignore it. I get the ear symptoms even on dosage too low to really expect herxing on the first dosage and then they stay and decrease in severity very slowly and after a month with no meds they still bother me.
Posts: 526 | From NJ | Registered: May 2007
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posted
Have you tried something like lumbrokinase or systemic digestive enzymes such as Wobenzyme or Vitalzym? Other things which thin your blood might be helpful -- gingko or even Vitamin E.
I would try to thin your blood -- heparin is another option -- and take as many antioxidants as possible which cross the blood-brain barrier. Things like Vitamin C, CoQ10 and pycnogenol (pine bark extract).
Herbs might be easier on your ears than antibiotics. Try some of the ones in the Healing Lyme book.
And of course if you can tolerate it then exercise will help get blood flowing to your brain.
A vasodilator may be needed as well but those can lower the blood pressure and cause side effects such as orthostatic hypotension.
Also be sure to take the good fats -- will help with inflammation and brain healing.
If you have severe Babesia then the brain swelling and head pressure may not improve much until that is treated unfortunately.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I'm considering checking myself into the hospital -- I would have already if I knew they wouldn't be clueless about lyme & co-infections. I don't have any systemic digestive enzymes here to try . When I'm not laying down I am completely non-function in terms of brain functionality. I had to stay home from work today something I never have to do for my symptoms even at their worst.
Posts: 526 | From NJ | Registered: May 2007
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posted
call emergency line of my llmd going to hospital soon hopefully he can talk to them so they don't abuse me too much have someone to drive me that just came home.
Posts: 526 | From NJ | Registered: May 2007
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posted
My LLMD advised me to watch for ear pain on artemisinin. He said if I get ear pain back off the artemisinin.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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posted
I went to the hospital big waste of time, shouldn't have done that, but I paniaced. They told me to continue seeing my lyme doctor or a neuro and continuing plugging away at seeing what is wrong. Got some NSAID shot that helped a bit, but it is going to wear off soon.
Posts: 526 | From NJ | Registered: May 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Consider this (scroll down to "sinus buster")...
Because it appears red pepper helps reduce quin. acid (toxin).
Do NOT overdo it!!!!!!!!!!!!!!
"Hot Pepper (Capsicum spp.) Protects Brain from Sodium Nitroprusside- and Quinolinic Acid-Induced Oxidative Stress *In Vitro* G. Oboh, J.B.T. Rocha
Journal of Medicinal Food. June 2008, Vol. 11, No. 2: 349-355
In vitro...means in a lab. In vivo means it was tested to work/not work in an animal.
In vitro test results...if good, usually proceed to in vivo testing.
Follow?
Just because it works in a petri dish does not nec. mean it will work IN US...but might.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I might try some hot as appreciate soaks like Epsom salt soaks to hit the ones on top. I soaked up to just my nose sticking out in the beginning. It did help me. But some it is too much.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Marnie, my quin acid should be non-existent as I consume more hot pepper products than anyone here I'm sure. Don't think it's the cure-all though.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I'm not any better today, but I'm going to start taking my zovarix again. Maybe this is what I have and if I am wrong no big deal to be taking it for no reason:
I've been breaking out with mouth sores almost weekly since the end of last year. I had a head CT done at the hospital too they didn't see anything wrong. That article says up to 30% have no adnormal CT findings.
I did take zovarix at one point for about two weeks straight to see if it would have any effect on my normal daily symptoms at the time I thought maybe I felt a little better, but I wasn't sure. It gives me GI issues, so I stopped as it seemed unnesscary to be taking daily when it was giving side effects and is only indented to be suppressive and not curing in nature.
Posts: 526 | From NJ | Registered: May 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
In meningitis caused by bacteria such as Neisseria meningitidis, Haemophilus influenza, or
Streptococcus pneumoniae the local production of cytokines and chemokines by glial and
endothelial cells upon contact with pathogens is currently regarded as the initial step in
regulating the directed migration of distinct leukocyte populations to an inflammatory site within the
CNS [7- 10]. In Lyme meningitis the cellular sources of these mediators are unknown
I may in the chloride channels. Get the chloride out and it will help.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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do you take anything like NAC, garlic, or glutathione.
For the last year I have been feeling so sick and I think its from not detoxing sulfur and ammonia properly. I would go through what feels like brain swelling and the weirdest/worst overall body symptoms completely disabling me... funny none of it really started until I started taking Artemesia, Nac and other stuff with Sulfur. Now I eat a banana and feel sick as hell.
I am doing sulfur/ammonia detox and already feel a ton better.
I wasted 8 months trying to "cure" symptoms that I believe were brought on by this detox problem.
Search threads for "sulfur" and posts by TerryK.
Posts: 73 | From ca, usa | Registered: May 2009
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bettyg
Unregistered
posted
rad, stopping by to give you a hug/kiss; best wishes ... being timed at library..
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posted
I was on vacation for two days. I went from talking nothing, to taking 3 times a day zovarix, Zhang HH-2 Capsules, Zhang Circulation P, Resveratoral, and L-Lysine.
Sometime after the 3rd dosage it started to let up a lot. Still not completely better, but going to continue this as I feel functional again now. No way to know if I am helping, or just got better by chance.
Posts: 526 | From NJ | Registered: May 2007
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posted
Started halving the dosage of zovarix and the brain swelling is coming back again. Going back to 2 caps each dosage. I need to get more of this because I will run out around the end of the week. Going to also bump up the L-Lysine since if it is really related to HSV-1 this should also help.
Anyone have any good anti-viral whether prescription or non-prescription recommendations?
Posts: 526 | From NJ | Registered: May 2007
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![[Frown]](frown.gif)
. When I'm not laying down I am completely non-function in terms of brain functionality. I had to stay home from work today something I never have to do for my symptoms even at their worst.
![[Smile]](smile.gif)
Don't think it's the cure-all though.
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