posted
So, I have a great doctor, and I am currently on a couple IV's and several orals. But I have been fighitng Babesia WA and Bartonella ( both resistant) for several years. Babs WA has been since....well..at least 8 years but possibly longer, we found it then when I was 14 and didn't know it was WA. At first it would go away with mepron/lariam, drugs like that, and wouldn't relapse for a couple of months. But now it doesn't seem to respond at all to anything. Were currently trying primaquin (to penetrate bone marrow) and plaquenil. Also, about 3 weeks ago I woke up at night screaming like a night terror, I screamed in my sleep until people ran out and grabbed me but I didn't stop screaming for about a minute while my mom was grabbing me and talking to me, by the time my boyfriend got there a couple minutes later I had finally stopped, but it took hours before I was fully aware of things. I had only been asleep about 1/2 an hour. Since then I have had bad headaches, forgetfulness, lack of personality, and dizzyness.Trouble with my eyesight also. Last night I fell asleep on the couch after an excrutiating headache all day (crashed about 6pm) and I woke up a couple times to eat dinner w/my boyfriend, or get a glass of water. After I ate I went back to sleep and woke up later, sat up and looked around for awhile. My b/f noticed I was acting funny and looking wide-eyed around the living room, so he asked if I was okay. I recognized him and the house, but I didn't know where I was, who I was, or that I could speak until he asked that. I asked where we were and he said "in your house" and I said, "oh, that's why it looks familiar." My skin was real hot but I only ran a fever of 99. Anyone had stuff like that happen? This is a first for me. When I was much worse I had memory issues like forgetting words or forgetting what I was doing, names, stuff like that. But I have never not known my own home, or myself, or not known how to speak. I remember all of it now, and it was like I had amnesia. I couldn't remember anything except faintly that he and I were supposed to be going on, (or on) vacation. We left 2 weeks ago and got back 4 days ago.
I've been getting treated for lyme since I was 14, I either had it congenital or since I was 6. I am now 22. A little bit worried. I have called my doctor and also gotten an appt with a PA/PCP around here. Any thoughts?
-------------------- ~~~Lishka~~~ Posts: 18 | From Pacific NW | Registered: Aug 2008
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-------------------- ~~~Lishka~~~ Posts: 18 | From Pacific NW | Registered: Aug 2008
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Lishka.
I'm sorry to hear you have had such a battle with lyme and coinfections for such a long time. And so young!
Babesia WA-1 has now been officially re-named "Babesia Duncani."
It's a pretty evil kind of babesia to have and also pretty tough to get rid of, as you've seen firsthand.
One of its calling-cards is bad headaches. Memory loss is another. Those two things are MY worst problems too.
It pretty much sounds to me like you haven't really gotten rid of the babesia.
What kind of doctor do you go to?
When you treated your babesia, what meds did you take? You mentioned Mepron and Lariam. How long did you stay on them when you took them?
I treated mine twice, with a Mepron/Zithromax/Artemisinin combo.
Some non-LLMD docs would think 14 days is a sufficient length of time to treat, so that's why I'm asking about your doc. Hopefully you have an LLMD, and not just a "regular" doc.
Tell us more.
Hang in there -- there IS life after after this junk!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Sorry, guess I wasn't real specific there. I have an amazing LLMD. He's not Dr. Jones, who I miss very much, but Jones referred me to him. I will not give out his name for obvious reasons.
He knows I still have babesia WA, and we keep switching treatments (usually we try 3-4 months on each, until we know for sure it isn't working)as my symptoms of Babesia and Bartonella increase. Right now I am on plaquenil and primaquin. I am supposed to switch over to some naturopathic stuff that we haven't tried, because we're running out of options. For the bartonella I cannot take rifampin (I am on morphine for pain and it blocks the receptors causing withdrawal. OUCH) and I have horrible symptoms of pain with avelox, so we're going to pulse that. We have tried mepron, lariam, artemisinin (my body swelled real bad with that), plaquenil, and a few others I don't remember.
Right now I am currently on IV Rocephin, IV Clindamycin, Biaxin, Plaquenil, Primaquin, and Valtrex ( Valtrex for active mono, HHV-1 and HHV-6 herpes viruses, EpsteinBarr, and Cytomegalovirus).
-------------------- ~~~Lishka~~~ Posts: 18 | From Pacific NW | Registered: Aug 2008
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bettyg
Unregistered
posted
WELCOME; i think i remember you?? when were you here before?
lishka, would you please break up your 1st long, solid block post into SMALL paragraphs and also your 2nd post on the longer paragraphs for us neuro lyme folks???
instructions are below....big thanks!
Welcome; so glad you found us!! xox
Fyi: we have over 1000 viewers daily; 200 - 400 posting/replying so we all must manage our time well; so specific titles get our time/replies. NON-SPECIFIC ONES, I SOB, SCROLL ON BY! *************************************************************
Also, please be VERY SPECIFIC in subject line what you will be discussing.
Example:
PLEASE show your positive, +/-, and IND numbers from both western blot IGG AND IGM blood tests; do it this way please!
IGM ... do same thing for IGG below IGM *******************************************
18 + 41 +/- 78 IND
When you post or reply, please break up your solid, continuous block text welcome to the board! many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``THREE`` after each paragraph; we need that space for comprehension.
if you are NOT a wordy person, you can do 2 or 3 total ok. do this for your entire post.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING.
specifically, delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. I'm also in the early stages of losing my eyesight from diabetes retinopathy.
LYMETOO'S DR. C'S EXPLANATION OF WESTERN BLOT TESTING!
PRINT THIS OFF the full explanation, and then CIRCLE the numbers that coincide with your positives, IND! That will explain your no. results! -----------------------------------------------------------------------------------
also, please see below, TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
see my newbie package info; click on link at bottom of my package. @ http://tinyurl.com/58eyou ****************************************
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Breaking up text for neuro readers:
So, I have a great doctor, and I am currently on a couple IV's and several orals.
But I have been fighitng Babesia WA and Bartonella ( both resistant) for several years.
Babs WA has been since....well..at least 8 years but possibly longer, we found it then when I was 14 and didn't know it was WA.
At first it would go away with mepron/lariam, drugs like that, and wouldn't relapse for a couple of months.
But now it doesn't seem to respond at all to anything. Were currently trying primaquin (to penetrate bone marrow) and plaquenil.
Also, about 3 weeks ago I woke up at night screaming like a night terror, I screamed in my sleep until people ran out and grabbed me
but I didn't stop screaming for about a minute while my mom was grabbing me and talking to me,
by the time my boyfriend got there a couple minutes later I had finally stopped, but it took hours before I was fully aware of things.
I had only been asleep about 1/2 an hour. Since then I have had bad headaches, forgetfulness, lack of personality, and dizzyness.Trouble with my eyesight also.
Last night I fell asleep on the couch after an excrutiating headache all day (crashed about 6pm) and I woke up a couple times to eat dinner w/my boyfriend, or get a glass of water.
After I ate I went back to sleep and woke up later, sat up and looked around for awhile.
My b/f noticed I was acting funny and looking wide-eyed around the living room, so he asked if I was okay.
I recognized him and the house, but I didn't know where I was, who I was, or that I could speak until he asked that.
I asked where we were and he said "in your house" and I said, "oh, that's why it looks familiar." My skin was real hot but I only ran a fever of 99.
Anyone had stuff like that happen? This is a first for me.
When I was much worse I had memory issues like forgetting words or forgetting what I was doing, names, stuff like that.
But I have never not known my own home, or myself, or not known how to speak. I remember all of it now, and it was like I had amnesia.
I couldn't remember anything except faintly that he and I were supposed to be going on, (or on) vacation. We left 2 weeks ago and got back 4 days ago.
I've been getting treated for lyme since I was 14, I either had it congenital or since I was 6. I am now 22.
A little bit worried. I have called my doctor and also gotten an appt with a PA/PCP around here. Any thoughts?
-------------------- ~~~Lishka~~~
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Lishka who?
On my way to bed so not in the thinking mode right now.. but...
Thoughts to ponder. YOU, not me. Once I get a few answers... MAYBE I can think a bit better.
Could you have been exposed again? RMSF? Ehrlichiosis?
Are you taking Melatonin or any sleeping meds?
What was the last "new thing" or new med you started on? When did you start it?
Are you on any supplements? Add anything new lately?
This started about a week before your vacation... right?
Have you had an MRI of your brain lately?
Have you been doing physical therapy or doing any new treatments? Chiropractor?
How is your yeast young lady?
Zhang's herbs... maybe take a look at that protocol for babesiosis while you are hanging out.
Last but not least...
Is your mom still a horses rear end?
I'll get her attention with that stuff, won't I?
Hope you feel better soon... little baboon!
PS... Email me so I can get your address if you don't mind PLEASE. My computer has gone down about 20 times since you were last here... and I've lost a bunch of email addresses.
PSS... I may be off line for a week or so... so if I don't respond it isn't because I am ignoring you. It is because your momma is looking for me after my comment.
posted
Okay, I will try to break up my paragraphs. Sorry.
Also, because of my own neuro-lyme, I do not know how to condense sentences anymore. My processing was damaged.
I didn't completely understand what you meant about capital letters and quotation marks, I don't remember using them? Okay. I'll try to do my best. Sorry.
-------------------- ~~~Lishka~~~ Posts: 18 | From Pacific NW | Registered: Aug 2008
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