HealingWell
Search Close Search
☰

encephalitis meningitis lyme

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/25/2016 5:48 AM (GMT 0)
Here is the lyme doc for encephalitis lyme:
https://www.urmc.rochester.edu/people/23064386-eric-l-logigian/patients

Here's the article:
http://www.ncbi.nlm.nih.gov/pubmed/10395852

Here's the full article:
http://web.squ.edu.om/med-lib/med_cd/e_cds/the%20whole%20brain/wbafiles/cases/case19/eric.htm

Here's the drug that cures it:
https://en.wikipedia.org/wiki/Ceftriaxone

You can get it from India, but, of course, that's not recommended. I'm going to get it through a legitmate physician. But just for informational purposes:
http://www.alldaychemist.com/catalogsearch/result/?q=ceftriaxone+
Posted 2/25/2016 10:58 AM (GMT 0)
Just make sure you understand the dosage, administration, and duration of treatment.

If you have any questions, I am here to help. So just ask away, through personal mail on here.
Posted 2/26/2016 5:16 AM (GMT 0)
Hey thatdudefromkansas,

Sorry, I didn't see your email on there.

I do have a question, did you treat for meningitis or encephalitis? Did you use Ceftriaxone? How'd it all turn out?

I read in the article that the doc recommends 2 gram injections per day. If my LLMD won't prescribe it for me, I think I may go visit the doc. He's a state over. Hopefully he'd prescribe it for me.

Thanks!
Posted 2/26/2016 5:25 AM (GMT 0)
Glad to find this. Wondering what your symptoms were? THANKS for posting this info!
Posted 2/26/2016 11:46 AM (GMT 0)
My MOST scary symptom is increasing vision loss. If I close my right eye, vision is fine for 2 seconds but then this dark haze engulfs almost my entire field of vision now. It's strange, because I can sort of see through it, but I can't. It happens in half of my other eye's field of vision.

-tons of black floaters, and clear floaters. Need to wear sunglasses when driving.
-awful night vision. headlights stay in vision for a long time.
-

-occassionally get feeling of not getting enough oxygen to brain. It goes away faster now then it used to.

-once a month, while I'm sleeping, I'll wake up from a dream and my heart is beating very rapidly. Then it slows down, down, down, to the point where I can barely detect a heart beat and I feel faint.

-all symptoms get much worse with even the slightest amount of stress.


-My symptoms have been getting better, but I think it may simply be due to reducing stress. As soon as I get into a stressful environment like my old job, my symptoms return.

-when I have stress, I get intense brain fog, alzheimer-like feeling, numbness in forehead, loud ringing in ears, volume increases with stress, energy disappears, become sluggish and get muscle weakness,

- Rapid aging of skin. Wrinkles.

- Eyelid droop in left eye after intense dream. Corrects itself after half hour or so. Left eyelid has no droop.

There's a bunch more...
Posted 2/26/2016 2:38 PM (GMT 0)

thatdudefromkansas said...
Just make sure you understand the dosage, administration, and duration of treatment.

If you have any questions, I am here to help. So just ask away, through personal mail on here.

I may be misunderstanding, but if you are offering that kind of help, you need to be aware of this rule:

" 8. If you are a medical professional, do not use the forums to distribute professional medical advice and/or promote your services."


And we never, ever recommend doing IV's at home without the help of a doctor - even if you can get the supplies to do so. IV's are very dangerous and must be monitored for blood clots (which can happen frequently) and for infections in the line or at the insertion site, among other possible complications.
Posted 2/26/2016 11:17 PM (GMT 0)

gfields said...
My MOST scary symptom is increasing vision loss. If I close my right eye, vision is fine for 2 seconds but then this dark haze engulfs almost my entire field of vision now. It's strange, because I can sort of see through it, but I can't. It happens in half of my other eye's field of vision.

-tons of black floaters, and clear floaters. Need to wear sunglasses when driving.
-awful night vision. headlights stay in vision for a long time.
-

-occassionally get feeling of not getting enough oxygen to brain. It goes away faster now then it used to.

-once a month, while I'm sleeping, I'll wake up from a dream and my heart is beating very rapidly. Then it slows down, down, down, to the point where I can barely detect a heart beat and I feel faint.

-all symptoms get much worse with even the slightest amount of stress.


-My symptoms have been getting better, but I think it may simply be due to reducing stress. As soon as I get into a stressful environment like my old job, my symptoms return.

-when I have stress, I get intense brain fog, alzheimer-like feeling, numbness in forehead, loud ringing in ears, volume increases with stress, energy disappears, become sluggish and get muscle weakness,

- Rapid aging of skin. Wrinkles.

- Eyelid droop in left eye after intense dream. Corrects itself after half hour or so. Left eyelid has no droop.

There's a bunch more...


Just so we are clear to other readers on here those all are Bartonella symptoms as well. In fact ILADS states when neurological symptoms are out of proportion to other symptoms think Bartonella first.

I have Bartonella without Lyme and I have all these symptoms to a T.

Bartonella inflames the veins so when you feel like you have poor blood flow you literally do.

I was on rocephin (Ceftriaxone) for quiet some time. It does nothing to kill Bartonella or change my levels.
Posted 3/2/2016 9:25 AM (GMT 0)
My understanding was that Ceftriaxone was not an IV. Rather, an intermuscular injection. I think they recommend 2 grams a day.

I have been treating with azithromycin, doxy, rifampin, nystatin, and boluke (enzyme to break biofilm). Does this cocktail treat for Bartonella?
Posted 3/3/2016 5:39 AM (GMT 0)

gfields said...
My understanding was that Ceftriaxone was not an IV. Rather, an intermuscular injection. I think they recommend 2 grams a day.

I have been treating with azithromycin, doxy, rifampin, nystatin, and boluke (enzyme to break biofilm). Does this cocktail treat for Bartonella?

Ceftriaxone either intermuscular or IV. -Mycin + rifampin would be a bartonella meds. Did your LLMD discuss this with you? I lost my vision temporarily too from Bartonella. I haven't seen any lyme patients at the clinics I went to that have that symptom from lyme only.

Recent studies would confirm ILADS that encephalitis meningitis to be from bartonella co-infection:
http://www.ashdin.com/journals/jnp/235640.pdf
Posted 3/6/2016 5:04 AM (GMT 0)
Thanks Jackie. What was your vision loss like? When I close one eye, my other eye can see for about 3 seconds, then this dark veil encloses in on my vision. It gets darker and darker until I lose about 70 percent of my vision. I've had my eyes checked out, but all opthamaologists say their fine.


So, do you think just taking azithromycin and rifampin will eventually cure bartonella? I've been treating with this cocktail for 5 months, with no real results.
Posted 3/6/2016 8:09 AM (GMT 0)

gfields said...
Thanks Jackie. What was your vision loss like? When I close one eye, my other eye can see for about 3 seconds, then this dark veil encloses in on my vision. It gets darker and darker until I lose about 70 percent of my vision. I've had my eyes checked out, but all opthamaologists say their fine.


So, do you think just taking azithromycin and rifampin will eventually cure bartonella? I've been treating with this cocktail for 5 months, with no real results.

Same thing. I was at about 50-60% vision gone. My eye doc said she hasn't seen it in 10 years but was well aware that Bartonella can strongly effect your vision from med study.

What did you LLMD say? It's a real good start. Did you herx?

Adding more antibiotics to the mix will in many ways increase not decrease brain inflammation when you kill / herx so I am not sure on the logic of more antibiotics to make brain inflammation go away. You really must detox like it's a full time job to "cool" down your system. I use IV glutathione like an addict to cool down my brain. Then I can kill more once I cool my system down. Rinse and repeat over and over. If you let brain inflammation get on a run away train you won't be able to finish therapy. Sorry. It doesn't matter how tough you are ( typical man talk ). I learned that the hard way. Hallucinations, etc. Many ER visits...Not good. Not smart. DETOX DETOX DETOX. Diet changes can help also. Lots of good ideas out there healing well site pins.
Posted 3/6/2016 11:04 AM (GMT 0)
Thanks Jackie. Maybe what I have is Bartonella then. You're the first person I've found who has had vision loss similar to what I have. My LLMD just gave me a test lab kit for different co-infections. To tell the truth, I haven't found any detoxing routine to be particularly effective for me. I've tried epsome salt baths, I drink lemon water every night. I was taking Cohen's detox herbs. Drinking lots of water. Nothing seems to have eased the herxing. Now I'm trying abx pulsing, thinking that taking a week off abx will allow my body to naturally flush out the dead spirochetes.

I guess when I get my test results back, they'll tell me if I have Bartonella. I'm not sure if Bartonella is one of those co-infections that is difficult to get good feedback on, aka - false negative. I had an igenex test for lots of co-infections, and the only thing that came back positive was Lyme. But my LLMD said that igenex is not reliable, so he's got me taking some different test which he says is reliable.

My LLMD doesn't seem to be interested in prescribing anything injectable, otherwise I would definitely ask him to prescribe a glutathione IV. I believe I have some glutathione supplement pills around. I can try taking those again, to see if they help.

I just had one of those fun Lyme heart attack type of things tonight. I guess it's not a real heart attack. That's just what I refer to them as. You jump up in the middle of the night because it feels like your heart stopped, then your heart starts beating ferociously. Then it gets weaker and weaker pulse until you can't even feel it anymore. Feels like you're going to faint and/or die. It's probably lyme carditis, I'd imagine. Do you get this?

I get it about once a month. I think it might be doing a number on my heart muscle.
Posted 3/7/2016 3:15 AM (GMT 0)

gfields said...
Thanks Jackie. Maybe what I have is Bartonella then. You're the first person I've found who has had vision loss similar to what I have. My LLMD just gave me a test lab kit for different co-infections. To tell the truth, I haven't found any detoxing routine to be particularly effective for me. I've tried epsome salt baths, I drink lemon water every night. I was taking Cohen's detox herbs. Drinking lots of water. Nothing seems to have eased the herxing. Now I'm trying abx pulsing, thinking that taking a week off abx will allow my body to naturally flush out the dead spirochetes.

I guess when I get my test results back, they'll tell me if I have Bartonella. I'm not sure if Bartonella is one of those co-infections that is difficult to get good feedback on, aka - false negative. I had an igenex test for lots of co-infections, and the only thing that came back positive was Lyme. But my LLMD said that igenex is not reliable, so he's got me taking some different test which he says is reliable.

My LLMD doesn't seem to be interested in prescribing anything injectable, otherwise I would definitely ask him to prescribe a glutathione IV. I believe I have some glutathione supplement pills around. I can try taking those again, to see if they help.

I just had one of those fun Lyme heart attack type of things tonight. I guess it's not a real heart attack. That's just what I refer to them as. You jump up in the middle of the night because it feels like your heart stopped, then your heart starts beating ferociously. Then it gets weaker and weaker pulse until you can't even feel it anymore. Feels like you're going to faint and/or die. It's probably lyme carditis, I'd imagine. Do you get this?

I get it about once a month. I think it might be doing a number on my heart muscle.

Testing means very little. Many false positives and negatives. I didn't test positive for bartonella for almost 2 years after I got symptoms and many don't test positive at all. This is why ILADS says a Lyme diagnose and coinfections is largely a symptomatic one. Yes vision issues is a BIG ONE for bartonella. "When neurological symptoms are out of proportion to other symptoms think Bartonella."

Based on your abx regiment I would say your doctor is very aware you could have Bartonella and is treating you with proper abx. Perhaps you need to ask more specific questions about what your LLMD feels you MIGHT have?

I would avoid starting and stopping rifampin without talking to your doctor. I have dosed down because of pain but never stopped outright. It may cause bug resistance and cause more issues later.

The heart palpatations are just part of life. Sorry. It's no fun. It is also another sign you have too many toxins and need to detox more. That is the only way I got rid of them. Glutathione is not a prescription. You have to find a wellness center willing to give you IVs and it is not covered by insurance. Colonics or enemas also help alot to detox. Not fun but when it means keeping brain inflammation at bay I do them.

Zeolite is a good binder for toxins and easy to take.

IGENEX is a good lab for lyme. Generally galaxy diagnostics is the best for bartonella tess as they have many other strains they test for........ http://www.galaxydx.com/web/
Posted 3/7/2016 3:34 AM (GMT 0)
Jackie - While I agree there are many false negatives, I don't agree with the false positives statements.
Posted 3/7/2016 5:20 AM (GMT 0)
Thanks Jackie Moon. My neuro symptoms definitely outweigh my physical symptoms. No question. Maybe I should read up some more on Bartonella.

I think my heart issues are more than heart palpitations. Although, it's so strange I'm not sure what I would classify it as. Almost like a small heart attack. I know in lyme carditis there is a sort of electrical "short circuit" in the heart. That is kind of what I would describe this as. Seems like my heart stops for a second, and then tries to overcompensate for stopping by speeding up aggressively. Then it gets exhausted and slows down to a point where I can't feel it beating at all. I feel faint for about a 1/2 hour. Then it goes back to normal again. This only happens at night for some reason. Around 3 in the morning usually.

In any case, I would say it is more than simple palpitations. I have palpitations too. I know how those go. I can live with them. No problem.
Posted 3/7/2016 8:12 AM (GMT 0)

Girlie said...
Jackie - While I agree there are many false negatives, I don't agree with the false positives statements.

You don't have to agree, that is ok, but I currently am an example of this. I tested positive for tularemia then negative in short order without antibiotic therapy in between. I have 3 different doctors arguing for about 2 months over if I was even positive in the first place and quote a lot of false positive research which I can always pass along if desired. I also tested positive via galaxy diagnostics for bartonella and they want a retest for false positive before I get an official ICD code diagnoses of bartonellosis. Frankly I don't care either way if I still have symptoms it is an issue for me positive or not and I want to continue to seek answers through treatment.

@gfields
I dont have lyme just everything else! My heart palps seem to be mostly from babesia.
Posted 3/7/2016 8:30 AM (GMT 0)
Sometimes I feel like I've caught Malakame Tapopkarosis from Sword in the Stone:
https://www.youtube.com/watch?v=1pkHYAdMsns (4:11)

Jackie Moon, how are your dreams? Do you get really vivid dreams/nightmares? I get these feverish dreams that are like being on LSD. When I wake up, it feels like part of my brain melted. Do you get dreams like that?
Posted 3/7/2016 8:45 AM (GMT 0)
Oh, I was reading up on Bartonella. The first place Bartonella goes is your lymphatic system. I was reading about tonsils there other day. I didn't realize this, but tonsils are lymph nodes. If if you feel around with your tongue, you have these weird little tiny ball things under your skin. Well, one of those little ball things pop out through the skin in the back of my throat where my tonsils are. It's called a tonsil cyst, I think. It's been happening for years on and off. Like 10 or 15. I never thought much of it. And I always get sore throats as well. I have to constantly where scarves or else I'll get a sore throat. Even in summer. I sleep with a scarf too.

Anyway, I wonder if this tonsil issue is related to Bartonella.
Posted 3/9/2016 6:36 AM (GMT 0)

gfields said...
Sometimes I feel like I've caught Malakame Tapopkarosis from Sword in the Stone:
https://www.youtube.com/watch?v=1pkHYAdMsns (4:11)

Jackie Moon, how are your dreams? Do you get really vivid dreams/nightmares? I get these feverish dreams that are like being on LSD. When I wake up, it feels like part of my brain melted. Do you get dreams like that?

Oh yah. I was really really bad for a while. I even was hallucinating during the day. I would say LSD dreams is an exact description OR I use to describe it as watching scrambled TV on the old antenna tvs.

I wish someone would have told me about Bartonella earlier. I knew I was really sick I just couldn't figure out what. I thought it was meningitis or septic shock and was beside myself. The good news is you are not dying even though bartonella makes you feel like that a lot.

Galaxy diagnostics finally got a good blood test identification on my bartonella. I am 1/256 positive for antibodies 2 years LATER. I was at one point MUCH MUCH higher ( remember: it also takes time for your body to develop antibodies )

You should watch galaxy diagnostics webinar it is really helpful. It talks a lot about symptoms and testing.

One minor clue on my bartonella before I ever tested positive was my WBC use to drop really really low when I felt the worst. Around 2.5-2.8. I am usually in the 5.0-8.0 range. I also would become pale white when I had the worst of the brain issues. This is because Bartonella causes vascular inflammation. When you feel like you are not getting enough oxygen to your brain that would be exactly what is happening. Poor blood flow.

My lymph nodes are always swollen.
Posted 3/9/2016 10:42 PM (GMT 0)
Hi Jackie Moon,

The more I read your posts, the more my symptoms sound like Bartonella. After I wake up from one of these LSD dreams, it feels like I've had a labotomy. It's like, whoa, what did my brain just have to deal with?

My doctor is sending me to a new place for blood work for co-infections. This might turn up a diagnosis for Bartonella. We'll see.

I do feel like I'm dying. I went for a light walk today, and I wasn't sure I was going to make it. ugh.

I will check out galaxy diagnostics webinar.

Thanks!
Posted 3/10/2016 12:02 AM (GMT 0)
Those tonsil cysts are also known as tonsil stones. I used to get them a lot, so I would use a q-tip and very, very gently work them out.

I don't understand why your doc isn't treating you for Bartonella if you have all the symptoms?
Posted 3/10/2016 12:40 AM (GMT 0)
Oh, that's a good idea. Never thought of that. Yes, they do seem to just pop through the skin. Eventually they pop back under the skin.

I think he is treating me for Bartonella. He's got me on rifampin, which I think is a treatment for Bartonella.

I switched my PCP. I was explaining my lyme disease journey to him, and he was giving me irkfull looks. Like he thought I was a hypochondriac. Good start. I showed him an official letter from the state of Massachusetts that says I have lyme disease. He then had me tested for lyme with a test through Reliant Medical. It came back negative for lyme. So that either means that all of the abx that I've been on for the past 5 months wiped out the lyme spirochetes or his test stinks.

I'll be getting a new test recommended by my LLMD on Monday. Those test results should be interesting, negative or positive. If it comes back positive, I think I'll send him a copy, and say, see, your test stinks. You shouldn't even test people with that test because it just confuses them. If it comes back negative, then I'll have to wonder if I got rid of my lyme and just have some other co-infection to fight off. I definitely don't feel any better.

I'm also wondering if I should hold off on taking the intramuscular Rocephin until I get these test results back. I found a discount card that will allow me to get the drug for 400 dollars. But I also need a script for lidocane and changeable needle tips to mix the medicine up with. I've injected stuff before, but I guess Rocephin comes as a powder. So you mix it yourself. I'm a little nervous about mixing, because if you don't mix it up well and inject a particle that hasn't resolved, I don't know what could happen. I'm concerned about thrombosis and stroke. Wouldn't want a particle to get into the blood stream and cause a stroke or something. On the fence about taking this drug. Also, if I have Bartonella, I'm not sure if Rocephin will help with Bartonella treatment.

Post Edited (gfields) : 3/9/2016 5:44:16 PM (GMT-7)

Posted 3/10/2016 12:58 AM (GMT 0)
That is an interesting point about bartonella and it inflaming the veins. I think this may have been why my blood pressure was through the roof prior to diagnosis and treatment. It has come down with treatment to a normal level(which my doc said would happen). I'm hoping this is an inclination that treatment is indeed healing me.
Posted 3/10/2016 1:06 AM (GMT 0)
Poop!! Grrrr! I had a nice post all typed out and hit one wrong button!!!
$400? YOUCH!! I'm so sorry!! Makes me even happier that I ended up using herbs. They aren't as expensive!

I would encourage you to be sure your concerns are addressed before you use those abx. Maybe you should start another thread specifically about that abx for those that have used it?

Anyway, I would use a qtip and remove quite a few of those tonsil stones each day - my tonsils would get sore - then wait a day or two and then do some more. They smell pretty bad since it's just a collection of bacteria that got stuck (I believe). I was amazed at how much I got out, but I haven't had any issues with that since I healed in 2012 - 4 years ago. Oil pulling and warm salt water gargles also helped me.

Do you know what kind of test your GP had you do? If it was an IFA or ELISA (essentially the same test), those rarely turn positive, as they miss up to 70% of those that actually have the infection. Western blot isn't much better at only catching up to 50% of those that actually have the infection, but it has bands we can rely on to tell us if there were any Lyme specific bands at least.

We don't encourage members to retest usually. These tests rely on antibody production from the immune system, but Lyme inhibits (reduces) the immune function, so it's kind of foolish that we still use such faulty testing methods. And with Lyme reducing immune function, that means that people can test negative to other infections they could have at the time as well if it's an antibody test.
✚ New Topic ✚ Reply