I dont come to LN much anymore but I figured I would do a update on my condition and things-
Overall I feel pretty good most of the time but I have not been able to get rid of some of my Babs symptoms- Low body temp 93F and excessive sweating anytime I do anything and getting restful sleep is still hard -
Still have the Vampire sleep habit -3am -
Overall I dont have body pain but I am still having migraine headaches but I dont know if it is allergies or what is causing them -
I have been off ABX for about a year + or so but I do take some when I get the Relapse feeling - DOXY -
Just visited 2 different dentists and in both offices people knew folks with Lyme -
One dinists had lyme but was treated 2 days after infection and was OK- he thought he was Superman and talked like lyme was No Big Deal- NYC Area -
I told him that he was Extremely Lucky to have been treated quickly - Or he could have been just like me-
The hardest thing for me now is getting out of my house and making friends -I was pretty much stuck in bed for 25 years and am now 60 years old-
making friends is not easy when this old -and the staying in house habit is hard to break- people I used to know are long gone -
Anyways let me tell you that You Can Get Better - I Have and I was as sick as a person can get-
I had Lyme / Babs and maybe more - 18 years sick before I figured out what was wrong and 7 years on ABX treatment -
A few things I learned -
Take your meds on time- don't miss doses - it matters- Drink Gallons of clean water Daily to wash toxins away-
Eat Good food -little or no carbs -
Get as much rest as you can -
Dont overdo work or chores - they will still be there when you get better-
Pot will help you and it does have ABX qualities and will make pain easier to deal with -
People really have No Clue what you are going threw- expecting them to understand is a waste of time and will just cause you heartache and stress -
DONT count on a regular doctor to help you - Most will just blow you off and dont want to spend the time it will take to help you -
If you can find a LLMD and use them -
I found a online site for ABX that is good and they carry everything that is needed - company is in Singapore -
I have used them for several years and the medicine has been Real and of good quality -no script needed - MUCH cheaper than US pharmacies -
If doctors wont help you this is a option to get meds -
Dont expect things to happen overnight it takes time- Like I said-- You Can Get Better -
Posted by Brussels (Member # 13480) on :
Groovy, thanks for the update.
glad you are better, somehow, from the relapse (Or was it reinfection, I can't remember).
I hope you'll knock your babs down for goo.
And that you try going to bed a bit earlier. Maybe you'll find some other social activities during day time!
It's amazing what experience teaches us, and how you managed to become almost your own doctor.
Can't you post the name of the pharmacy here? I wonder if this is allowed. I mean, I'm not an abx fan, but for those who desperately need.
What kind of clean water do you take?
I always liked your pragmatic approach to the problem and fast action, in times of odds!
So you do think pot is very helpful?! Smoked or ingested or how?
Thanks again!
Posted by Robin123 (Member # 9197) on :
Thanks for the check-in - a lot of wise advice...
Re getting out of one's place - I have found it helpful to connect with folks with whom I share interests - and it gets better, as we get to know one other. I just have to be careful to protect myself when I'm doing group activities.
Posted by poppy (Member # 5355) on :
Nice to hear from you again.
What I have done to combat being alone, especially with no family support, is find new interests that don't require too much and then develop friends or at least friendly acquaintances there. Don't tell them your health problems.
However, I did break the rule about an interest that doesn't require too much effort and might be biting off more than I can chew with this new one.
Posted by tulips (Member # 44773) on :
I;m glad you're feeling better. For what it's worth, I was just looking on a symptom list and found that severe headache is listed as a symptom for Babesia.
Posted by msdixie (Member # 46254) on :
Thank you Groovy! I am glad you are improving ! I have lived the same hellish battle and am still struggling , but do have a life now. I have made friends through local meetup groups I found online. I have literally had to construct a "family " since I have no relatives near me. Check out " meet up groups " in your area and force yourself to socialize .
I have had very good luck with All Day Chemist pharmacy in India and the prices are VERY low. Americans are being ripped of royally with drugs in the U. S. I have never had a pill from an online pharmacy that was a fraud or a dud . I can not believe the price difference in meds like Retin A or asthma inhalers.
Posted by groovy2 (Member # 6304) on :
Thanks Everyone -
Yep in the US ABX prices are 9 X or more higher than in Many parts of the world -
I lived on us/mexican border and the Exact same medicine cost 10th the price in mexico -
example - US med cost $54-- mexico $4 - - Seriously -
Posted by groovy2 (Member # 6304) on :
Brussels -
Pot Definitely helped me -
Pot has ABX effect on germs - No Doubt in my mind for years-
I Always got sicker when I ran out of pot - now there is studies that prove my experienced-
I smoke it but other options are available now-
water filter- I purchased a filter similar to this one 10 years ago at Whole Foods - works GREAT -high quality - 10 stage filter -about 1 gallon per minute -
hooks to standard faucet- Easy to use - sits on countertop-
britta type filter not as good - hassel to use -poor design - small filter -
Posted by Brussels (Member # 13480) on :
Groovy, thank you a lot for the info on both pot and water filter!
I live in Europe, so I don't know if the filter will fit here.
Posted by geronimog (Member # 34875) on :
Groovy2, so happy you decided to drop a line. My main struggle is with babesia duncani and this of course had me reading all your old posts on the subject. I too have been sick for decades never knowing what was causing it, and similarly I've found the only protocol that has done anything is chloroquine and primaquine (500-1000mg & 30mg/day).
I'm sorry to hear you're still having babs symptoms. I was happily entertaining the idea that this is how one gets on top of the infection.
I'd really like to connect with you and compare notes.
Posted by CherylSue (Member # 13077) on :
Thanks for the update. Perhaps, you haven't fully eradicated your disease and need to try abx again?
Posted by Lymetoo (Member # 743) on :
That filter info says this:
"Once water has been filtered, inert and desirable minerals like magnesium, potassium, chlorides, and fluoride are left behind."
HA!! Who wants fluoride in their water??
Posted by groovy2 (Member # 6304) on :
geronimog -
Primaquine/Chloroquine and Bactrum DS (everyday)
Above 2 meds helped me the most for Babs -
Quinine helped also -
Biaxian helped Overall -
Mepron seemed to help but I would relapse in a day after stopping -
My symptoms are Much better now -
remaining symptoms - Sleep problems- Low body temp 93F- ears ring 90% of time -loud - sweating -
I still sweat a Lot doing any type of exertion - But I dont have sweat pouring out of me 24x7 like I used to - so much better
Body pain is mostly gone -
Feel OK overall -
I am Really Surprised that I am still alive - was very sick - 18 years - thought I was Toast -
I have not stayed current on new treatments -
spelling on the names of the meds I listed above may be incorrect -
Posted by geronimog (Member # 34875) on :
Groovy2,
Although I've had some sweats in the past they've never been a real problem for me. I'm pretty sure my problem with babesia is a nasty reaction to a toxin it produces. It basically oxidizes my entire system, and this fries my energy. I've an ME/CFS diagnosis and suffer PEM on top of brain fog and many sensitivities.
When I've used an effective agenst against babesia in the past the oxidation halts and my head clears up completely. And this happens in a matter of hours. It's as if certain medications have stopped the bug from producing its toxin.
Wormwood worked like a charm in this regard, but that was before I even knew I had babesia. I just got incredible relief from taking the herb. Unfortunately I tried artemisinin on its own, not knowing what I was dealing with and there ended a terrific palliative treatment. I assume the bug developed resistance to it.
Subsequently whenever I've started a new herb or drug it seems I've been able to stun the bugger into not releasing this toxin and I get the temporary relief as I did with the wormwood. But it only lasts a day or so. However it's always a nice reminder of what's to come if I can get rid of babs.
Have you continued to take chloroquine and primaquine all this time? As well as Bactrim? What dose for each?
I get the loss of equilibrium symptom from C/P, which I'm pretty sure is die-off. Without this combo I get no indication I'm making any progress whatsoever. Did you ever get this symptom?
How long did you treat with C/P before you saw real improvement?
I backed down to 1 chloroquine per day for fear of bringing on toxicity of the eyes too soon. Adding Flagyl to C/P seems to augment the killing considerably. Just as if I'd taken two chloroquine.
I've found the herbs sida acuta and cryptolepis only minimally effective as killers, and only in combination with C/P. And they're just too expensive to take in large doses.
My strategy now is to continue with the C/P and combine it with other agents and not let up. This bug scares the **** out of me. It's the difference between having a decent life and not.
I've not gone the Mepron route because I'm in Canada and have no way to access it, but even if I did it's too expensive, and probably not as effective as C/P.
Quinine was a bit of a disappointment. It only seemed to produce die-off when combined with clindamycin. The latter, again, is too expensive at about $12 per day. And quinine does that annoying thing with the ears.
Can you message me the pharmacy you use in Singapore? Generally I use ADC for everything except the primaquine which I get from a pharmacy in the south Pacific.
I'm somewhat intrigued by Beyond Balance Babs 1 & 2, as well as the Byron White formulas. Have you any experience with these?
I'm also trying to source Chang Shan, which looks like a promising herb for piroplasms.
A friend of mine is going to help me with some edible cannabis. I told him smoking it never did anything good for me, but he assures me it's a different drug when you eat it.
Do you know the cause of your tinnitus?
I realize this is a scattered post, but if anything triggers any insights you might have I'd really appreciate your thoughts.
Thanks
Posted by groovy2 (Member # 6304) on :
Hi geronimog
I took chloroquine and primaquine combo Many times- It has helped me A Lot -
They are Strong meds and the Herx reaction can be extremely strong the first few times- So Be Expecting it -
Chloroquine / Primaquine and Bactrum DS helped me the most -for babs -
After many treatments of Chloroquine / Primaquine-
I started taking One primaquine a day for long periods of time- Months - also took Bactrum DS at same time -
I think it is what got me to the point I am at now-
but primaquine blurs my vision Very Badly -
So now I take it for a while and then stop for a period of time -
Balance was a problem so I had things positioned around home to hold onto - Amazingly I never fell completely down -
Biaxian is a Great all around med and I took it daily but It is crazy expensive but if you can afford it I would take it-
Glad to hear you dont have drenching sweats like I had - Sweat poured off me 24x7 even in winter- had to put on dry cloths 5 or more times a day-
Had to use air beds because bedding would be soaked daily - wore out 18 air beds - air leak-
I really have no clue what is causing ringing in ears because sometimes it just Stops - hour to a day or so--Ahhh
Then ringing starts again - sometimes its crazy loud- like right now -