posted
Hubby is getting very discouraged. At the half way mark of his intensive babs treatment.
Should start by saying that this is a self directed treatment -- currently do not have a LLMD. Got treatment suggestions from 2 LLMD's and PCP is prescribing and supervising.
Just finished the 2nd 10 day cycle of oral quinine and IV clindamycin. This is the standard IDSA doses -- 6 quinine pills daily and 3 IV's.
During the 1st round hubby developed hives on the malarone. He was on 4 pills daily. We stopped for 5 days and resumed. He worked back up to 3 pills daily within a week and has stayed there -- no more hives -- so probably not a true allergy to the mepron part of the drug.
During 1st 10 day Q & C cycle -- ho herbs, on malarone 4 pills daily for 3 days then 5 days off and at 1 pill daily for 2 days.
1st 10 days off -- added lactoferrin -- 6 pills daily and cryptolepis tincture 3 droppers 3 times per day plus malarone at 2 pills daily for 5 days and then 3 pills daily for 5 days. Stayed on IV clindamycin once daily.
2nd 10 day Q & C cycle -- remained on lactoferrin but no other herbs plus malarone at 3 pills daily for all 10 days.
2nd 10 days off -- remained on lactoferrin and malarone as above. Tried a new "secret" herb -- more on that later if it helps. Stayed on IV clindamycin once daily.
During the Q & C cycles -- feels awful but no obvious babs symptoms -- hearing issues and increased dizzyness and increased head pressure are mainly drug side effects. Hearing returns to normal when not on quinine.
3 days after 1st Q & C cycle -- babs symptom attack. Sweating, increased dizzyness, mild tremors and dry heaves.
During 2nd round of Q & C -- one really bad dizzy spell.
2 days after 2nd Q & C cycle -- very bad babs symptom attack -- chills, sweating, dry heaves, bad tremors, dystonia.
I was able to stop the progression of symptoms with some of my normal emergency measures -- oral potassium salt substitue in water followed by peach leaf tincture to stop the dry heaves. IV phenergan 12.5 mg to stop the tremors and dystonia. And this time I also gave hubby 2 butterbur/feverfew capsules (NOW brand) to help with the head pressure and dizzyness. At least I did not have to resort to IV Ativan, but even that didn't work back in December.
Hubby has been on 2 of the butterbur/feverfew capsules daily, 2 gingko and 2 vinpocetine for the last 3 or 4 weeks. Keeping him somewhat stable but not strong enough to really help significantly with decreased bloodflow to the brain.
Plan from the docs was to do 4 cycles of the Q & C. Then switch to IV Flagyl one time per day for lyme cysts.
Hubby and I both think the Q & C treatments are going to be ineffective -- guess we will stick it out for now. Low dose oral Q & C always helped in the past -- did 4 months of 10 day rotating cycles 3 different times in the past. But it seemed to start losing effectiveness after the first couple of months.
The main concern is that hubby is scared of having a really bad dystonia attack where he is virtually paralyzed for hours and nothing works to stop the symptoms. Today was the closest he had come to having a full blown attack since his last ER visit and hospitalization in December.
I had planned to rotate various babs herbs during the 10 day off cycles. But may switch back to higher doses of cryptolepis tincture in another day or two.
Hubby had wanted to go ahead and try a couple of doses of IV Flagyl during this off cycle. May still do that.
Adding art isn't really an option. Did that for 15 months (3 weeks on 1 week off) long ago. Also already did 8 rounds of Coartem. Plus about 2 months of Daraprim.
Have done Alinia -- 4 months at half dose and 4 months at full dose as well as Bactrim for 15 months I think.
I have been intensively researching babs herbs and will post a long thread in a few more days about that.
If anyone thinks they have beaten babs with herbs -- I am all ears.
The options seem to shrinking. But maybe if hubby is not really allergic he could give mepron another try after finishing the Q & C. larium is just about all that is left to try. He did do that for about a month back in 2004.
Still plan on repeating primaquine and chloroquine but was planning to do that at the end. Did 2 rounds in 2007 using the Liz28 low dose protocol.
Will probably add in some herbs during the 3rd round of Q & C.
Any suggestions??????
Bea Seibert
Please use my email and not p.m.
Seibertneurolyme (at) yahoo.com
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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BoxerMom
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I'm sorry to hear this. I look forward to your herbal post.
I tried to PM you with some info, but your mailbox was full.
jackie51
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posted
Babs herxes are definitely weird. I recall getting so sweaty & shaky. A little unsettling. I am not the least allergic to anything and I can handle every drug I've ever taken except Provigil and too much doxy. So, I knew it was a herx.
It really is hard to tell, but I remember lymemdblog doc telling me Babs herxes are just the weirdest.
Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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glm1111
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Bea,
I had a really bad case of babs and don't have any more babs symptoms after treating with antiparasitic herbs.
I had total head, chest and pelvic numbness and very bad air hunger. I also use salt/c as I am sure you know.
I think I did read that your hubby couldn't tolerate the salt/c protocol? At any rate, since babesia is a parasite and the herbs I took contain wormwood, green black walnut hull and cloves, they must have hit the babesia.
Persistence is key with these herbs and I am just wondering if they could help him taken over a period of time. Thoughts?
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Well, it would take a brave person to advise an expert like you. I am amazed at the complexity of what you are doing in this treatment.
Very puzzling why some babs cases are so much more difficult to eradicate. I was on a too low dose of malarone for 5 months, then switched to a more aggressive doc, and was treated for lyme and babs at the same time. This involved switching IV meds several times, but my impression is that the mepron and clindamycin for three months, with art added at the end....was what finally knocked out the germ. Maybe it is still hiding, but have had no babs symptoms in more than 5 years.
But your hubby's case seems to be a harder one. Hope you find something that helps.
I will say that I had to stop mepron because of liver troubles, then restarted it.
Posts: 8430 | From Not available | Registered: Oct 2000
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seekhelp
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I'm sorry to hear he still has so much trouble. My gut feel is the docs are grossly missing something more important, but who knows what that would be.
As Lou said, you ARE the expert. I think you're more educated than many of the LLMDs I saw! If you don't know, that's troublesome.
What about a blood transfusion? I know it wouldn't be a viable option, but it's used in serious cases, right?
It's difficult just to read these stories as I have WA-1 too. Nothing should be THIS hard to fix. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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blinkie
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Lou-do you know what strain you had.
Bea-I'm really wondering if babs is really what you're dealing with or not.
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lululymemom
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When I spoke to Kate at Woodland Essence she consulted with her Herbalist who advised using Cryptolepis for 2 weeks then alternating with Wormwood.. continue this cycle as long as necessary.
posted
blinkie - it was WA 1 (duncani) contracted by a tickbite in northern California
Posts: 8430 | From Not available | Registered: Oct 2000
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The one thing I left out regarding previous treatment -- hubby did cryptolepis tincture back in 2009 -- worked his way up to 15 droppers (1/2 ounce) 3 times daily. At that dose it stopped his tremors and nightly waking up seizure-like episodes for the first time in 9 years.
But then the supply of that African herb ran short and within 2 weeks of stopping symptoms came back. Hubby was only at the maximum dose for about 1 or 2 weeks. It was several months before the supply issue was resolved and then when we tried again hubby could not tolerate the herb at the high doses -- felt like his brain was on fire.
During the first 10 day break from Q & C we did do 3 droppers of cryptolepis 3 times per day. Hubby seemed to tolerate it ok. Think I will maybe try that again soon at a higher dose.
Woodland Essence will give a 10% discount if you order multiple 8 ounce bottles -- but at the high dose of 1/2 ounce 3 times daily (Buhner says it kills MRSA at that dose) it costs about $300 a month.
blinkie -- I am pretty sure hubby is dealing with either WA1 babesia or the mysterious dumb bell bloodborne parasite seen by Clongen last June. Will come back and add links to his previous test results.
He has just finished 7 months of IV Rocephin and 4 months of IV Zithromax plus had a clean bloodslide from Clongen in December (no more bartonella or whatever the coccobacilli are). Babs seems the obvious pathogen based on previous response to treatment, but as usual nothing is certain.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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blinkie
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Bea-so he still has the dumbell shaped organism?
Posts: 1104 | From N.California | Registered: Jan 2008
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tick battler
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posted
Bea,
Sorry your hubby is having such a hard time.
I know this sounds too simple but grapefruit seed extract worked for my entire family. My children had positive blood tests for babs duncani and mircroti and couldn't kick them with a year of Mepron/zith and atremisinin. They also had noticeable babs symptoms.
I am pretty sure my babs symptoms affected my lungs as I would wake up in the morning with them hurting on some days. That has not happened since our EDS testing showed the babs was gone 6 months ago.
Have you tried any muscle testing or electrodermal screening so you can see which infections are present and which herbs/meds work on them? This really helps you hone your protocol. It has been a life saver for us. I wish I had discovered it before the 3rd year of treatment.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Maybe??? Showed up on Clongen slide in June of 2010 and was not there in December of 2010. Per Dr K at the lab -- could not rule it out -- blood slide could be a false negative.
I feel much more confident regarding coccobacilli results -- decreased from numerous to few to none over last 3 bloodslides and we were treating that very aggressively.
But the eosinophil cationic protein (ECP) test hubby did in January after starting malarone would certainly seem to indicate a bloodborne parasite.
We do plan to repeat the WA1 test (titer was 2048 in December) and the ECP test (result 69.4 -- normal range of 0-10) and a new blood slide in another month or two after we finish the quinine and clindamycin.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Byron White's A-Bab worked wonders for my son. His doc has had good results with this product
Posts: 132 | From SE Pa | Registered: May 2006
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Personally I have zero confidence in grapefruit seed extract. Hubby was actually taking that with aloe vera gel and glutamine powder when he first got sick with the tickborne infections. He was recovering from his mercury toxicity and doing those things for maintenance support of his G.I.
Of course I have since learned that the glutamine was probably feeding both babs and bart. His endoscopy showed chronic gastritis and the stomach was uniformly inflamed from top to bottom several months after he got sick.
Hubby has done elctrodermal scanning in the past but there are no practioners anywhere near us and I think I would want one that knows at least a little bit about lyme. Hubby has had both kinesiology and muscle testing done by a couple of chiropractors but he says it wears out his muscles and he doesn't think it is worth doing.
I really would like to find someone with an Asyra machine just to see what shows up.
I need to find another LLMD but have been procrastinating. The next couple of months could get interesting. But hopefully not too much so.
Hubby is still sleeping thru the nights without having the nightly waking up spells of tremors and seizure-like episodes. And the dry cough seems to be gone -- rocephin stirred it up and then zith made it go away. It came back when he crashed in December but the malarone seems to have stopped it.
Overall if he could just get the head symptoms to resolve he is doing so much better. His tremors are gone for the most part but the dystonia still tries to act up from time to time.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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tick battler
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Do you think the GSE caused his gastritis?
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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posted
No -- I think the bart caused the gastritis. But the GSE did not kill the bart because he was taking the glutamine powder which is needed by both bart and babesia I think for growth.
Hubby had had gastritis a year before this before the mercury toxicity was diagnosed and it had healed but then came back after the flu like illness started which is when we assume he was bitten by a tick.
Hope that makes sense.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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sammy
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posted
Bea, I tried to email you but it didn't go through.
I'm really sorry to hear that your latest protocol is not working as well as you had hoped.
From what you described it sounds like your husband is relapsing 2-3days after stopping the Q and C combo. Would it be possible to take the combo longer than 10days? And when you need to stop the quinine for a few days can you continue the clinda and malarone?
You could also consider asking your doctor to prescribe multiple antimalarial meds all at once like IV Zith, IV Clinda, Mepron 2tsp BID, Daraprim BID, and Plaquenil. I've not heard of this being used here on LN but it's worth a try. I've read about similar combos being used for toxo in immunocompromised patients.
I'm not a physician though, just a fellow sufferer who doesn't want to be sick any longer.
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seekhelp
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Wow, that would be one hell of a ride Sammy!
quote:Originally posted by sammy:
You could also consider asking your doctor to prescribe multiple antimalarial meds all at once like IV Zith, IV Clinda, Mepron 2tsp BID, Daraprim BID, and Plaquenil. I've not heard of this being used here on LN but it's worth a try. I've read about similar combos being used for toxo in immunocompromised patients.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Have thought of continuing the Q & C longer but hubby is worried about hearing loss -- it does return to normal when he stops the Q but it is really bothersome while on the med and I don't know how to judge what is safe in that regard.
Not sure I explained it very well but after hubby decided he was not allergic to malarone we have continued that in between the rounds of Q & C. He has not stopped the C either -- just reduced it from 3 times per day to 1 time per day.
Looks like I am going to have to try something though. Hubby called me on the cell phone. He was driving to the mall to take a walk. He got sweaty and nauseated and pulled the car off the side of the road and got stuck in the mud. Had to call a tow truck.
Don't think I can get any more meds right now as the PCP wanted the suggestions in writing from the LLMD's. But we do have some daraprim left over and 5 doses of IV Zith so that is something to at least try. And I could try increasing the malarone again from 3 to 4 pills per day.
Going to have to try some sort of different combo the next 10 day cycle which starts in 6 days so I have some time to do some more research.
Will be sure and post an update during the next cycle.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Amanda
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Bea,
I'm not as bad off as your husband, but have been battling Babs for long time (tho, when I first got sick they kept me in the hospital for 5 days).
I have done Mepron/zith art (26 months), plus some bactrim and palquinil and flagyl in there at different times. Malarone didn't do anything for me. Have done cyptole**** tinctures, green tea extract, Bab-1 and Bab-2, and I can't even remember what else at the moment.
Then tried Larium, and after 4 months, RBC and nightsweats, nausea from hell gone (initial herx for 4 nights bad). Stopped Larium, and in 3 weeks, was back to where I was.
7 weeks ago I went back to Larium (at high doses), plus primaquine. RBC beginning to look normal again.
PM me if you want more info
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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blinkie
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Amanda-interesting that yo uare adding in the primaquine.
I just stopped lariam because my heart was acting up. I'm going to switch to mepron and in a month add in primaquine.
My LLMD is not convinced that what i'm dealing with is babs at all.
Posts: 1104 | From N.California | Registered: Jan 2008
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nefferdun
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It is 3AM and I have headache and nausea. I too am looking for the "babesia expert"! I hope your husband finds something that works. You sure are trying everything.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lymeladyinNY
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Oh, I wish I had answers! I feel like I am stuck in babs hell. Nothing seems to work for me. My LLMD tells me he's no expert in babesiosis and perhaps I need to go elsewhere for help on this. Not what I want to hear.
I, too, become paralyzed within my body with babs. It can last for a long time. I can't respond in any way. Eyes closed, can't even twitch. I appear to be sleeping but am screaming "help me!" inside. It is the scariest of all my tick-borne illness symptoms. Mepron/zith just barely holds back this terrible symptom.
I was rushed to the ER from the grocery store once when I fell into one of these spells all of a sudden when putting my groceries on the conveyor belt. I fell to the floor, closed my eyes, and couldn't respond. The doctor thought I was faking and kept pinching me and threatening me. It was horrific. To this day, I hate that man. I know it's a strong word, but I was terrified and he was abusing me. I will never forgive him.
Still struggling to stay ahead of this awful disease. My husband wants me to get a blood transfusion using his blood. We are actually pursuing this route to see if it's a realistic option for me. My husband is so afraid for me. I hate to see the worry all the time.
God bless you, Bea. You and your husband are often in my thoughts and prayers.
- Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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I've been treating babesia for sixteen months, and have improved 75%. Still trying to figure out the last 25%.
I don't know if this works for others, but it has worked for me. My LLMD does not believe in taking any drugs away or pulsing. So, since beginning of treatment, all we've done is pile on the babesia meds. The one time that she switched things up on me, it took a few months to get back to the baseline of improvement.
This may not work for everyone, but it has worked for me so far. I am currently on Minocycline (only 100 mg for arthritic symptoms), Mepron (2 tsp. bid), Zith (600 mg). Tindamax (500 mg. bid), Lariam (loading dose and one pill every 4 days)and IV Clindamycin (1200 mg. one week/mo).
I kept bugging my LLMD to let me try IV Clindamycin and Quinine. Reluctantly she agreed, and it was the one protocol that kicked me in my derriere. It must have been hitting babesia, or whatever protozoa I have, really hard. It's interesting that your hubby does well on this regime.
I know it's a lot of meds, and many cannot handle so much at one time. I'm counting my blessings. We're trying to figure out what to do next.
Posts: 964 | From san diego | Registered: Oct 2009
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Are you still on the larium? When I was researching and trying to come up with combos I thought it said that quinine and larium could not be taken together. I could be wrong.
Hubby just thinks it is pretty unbelievable that after everything he has tried that babesia is still an issue.
In desperation he had me go ahead and try the IV Flagyl last night. The LLMD who prescribed it says it does not work on babesia -- just on all forms of lyme. At this point hubby said if it helped with his headache pressure and dizziness it would be worth it.
He went to sleep during the IV and woke up a couple of hours later with nausea, sweating and tremors in his legs -- more like myoclonus really. I gave him the IV phenergan and he was able to go back to sleep. Not really sure if the IV flagyl is helping any but at least so far it doesn't seem to be making things significantly worse.
The IV Flagyl is prescribed for only once per day. Think I will try that for the next few days and continue with the IV Clindamycin at 1 or 2 doses. Originally the doc wanted him to do both at the same time but hubby and I thought that we should go slow and do one thing at a time.
Since December when he had the dizzy spell following a dose of IV Zith his head symptoms have just been nonstop. I think this is the worst they have been in the 10 years he has been sick.
Larium was the 2nd choice of the LLMD who prescribed the Q & C. Apparently some people do succeed with that. When hubby tried it 7 years ago he just took 1 pill per week or maybe it was every 5 days. Anyway he did not do a loading dose. The doc we consulted said he used 3 pills as a loading dose -- that very few people could tolerate 5 pills which is the standard dose I think.
Will keep everyone updated as it seems like there are more people than I realized with long-term med resistant babesia.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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blinkie
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Bea-it is true that you cannot add quinine with lariam, it can cause permanent heart damage. Please be careful with these anti-malarials as they don't mix well with some things.
I stopped lariam and my heart is no longer acting up. I got 5 months of it done, one pill every 4 days. Currently, I'm on mepron, flagyl, bactrim DS, pulsed art and this week I'm going to add cryptolepsis and zithromax.
Posts: 1104 | From N.California | Registered: Jan 2008
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Hope the zith helps, but that is another one that can cause heart problems. When hubby started on oral zith he had a new symptom of heart palpitations from the first dose. He got a complete cardiac workup which he had not had in about 3 years.
He has a mitral valve prolapse murmur probably from birth (discovered at age 3) so the heart work-up was medically justified.
Anyway his EKG's show PVC's and PAC'S which he didn't used to have. But after treating for bart with factive he had one perfectly normal EKG. And then the next one (doing quarterly EKG's) showed PVC's I think. But the machine read it as a more serious arrythmia -- supraventricular contraction.
Hubby does not feel the PVC's like he used to. We added in some additional heart herbs for a few months -- hawthorne and some kind of cactus -- so maybe that helped as well.
Just be sure to pay attention to any heart related symptoms while on the zithromax.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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