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What could have happened; I felt great for two days but collapsed hard and now everything hurts like never before.
In order to do PCR/Antigen tests with Igenex for lyme & Co. I went off ABX for 6 weeks. (I was still on MTX, reintroduced because on ABX only my hands further deteriorated. Though MTX did not relieve much pain either) Than at the end of the 6 week, I stopped the MTX, received two IM shots: Penicillin G Benzathine (Bicillin L-A) and Cetriaxone (Rocephin) to stimulate the possible lyme and increase the sensitivity of the PCR/Antigen test. I did the tests and directly after that started adding 200 mg mino/day and 400 mg plaquenil/day (as a substitute for the not effective drowsy making MTX AND as a possible Lyme fighter). I also added 200 mg/day grapefruit seed extract (GSE) against lyme. Directly after receiving the two IM shots I felt a bit feverish (Herx?) but that disappeared the next day and my finger/toe pain/swelling/stiffness did not change. A couple of days into the new cocktail, as described above, I first got a huge energy boost followed by a significant decrease in pain levels. That lasted only very short, 2 days, and it turned into the worst pain I have felt so far.
I am new to Plaquenil, but I don’t expect it to work this rapidly. For RA, it if works at all, it could take months to be come effective, not days.
I am also new to GSE. It seems that the rapid improvements were very much in synch with the addition of the GSE, which I added just a couple days after introducing the Plaq. and Mino.
I have used Mino before, and although I had good results on the big joints the small joints deteriorated and it never gave me this boost.What could have happened: Synergy of everything I took? Lowering of toxic or infectious load? Or maybe Toxicity? Some kind of pure pain reducing effect? Why did it swing around? It seems too simple to explain this by Herx only, because the there was so little time between the various stages and the energy boost was something I have not read about. I am now two days without anything and the pain is only getting worse.
Your ideas are very welcome! Thanks a lot.
Karel
(need to update my signature)
@Karel wrote:
In order to do PCR/Antigen tests with Igenex for lyme & Co. I went off ABX for 6 weeks. (I was still on MTX, reintroduced because on ABX only my hands further deteriorated. Though MTX did not relieve much pain either) Than at the end of the 6 week, I stopped the MTX, received two IM shots: Penicillin G Benzathine (Bicillin L-A) and Cetriaxone (Rocephin) to stimulate the possible lyme and increase the sensitivity of the PCR/Antigen test. I did the tests and directly after that started adding 200 mg mino/day and 400 mg plaquenil/day (as a substitute for the not effective drowsy making MTX AND as a possible Lyme fighter). I also added 200 mg/day grapefruit seed extract (GSE) against lyme. Directly after receiving the two IM shots I felt a bit feverish (Herx?) but that disappeared the next day and my finger/toe pain/swelling/stiffness did not change. A couple of days into the new cocktail, as described above, I first got a huge energy boost followed by a significant decrease in pain levels. That lasted only very short, 2 days, and it turned into the worst pain I have felt so far.
I am new to Plaquenil, but I don’t expect it to work this rapidly. For RA, it if works at all, it could take months to be come effective, not days.
I am also new to GSE. It seems that the rapid improvements were very much in synch with the addition of the GSE, which I added just a couple days after introducing the Plaq. and Mino.
I have used Mino before, and although I had good results on the big joints the small joints deteriorated and it never gave me this boost.What could have happened: Synergy of everything I took? Lowering of toxic or infectious load? Or maybe Toxicity? Some kind of pure pain reducing effect? Why did it swing around? It seems too simple to explain this by Herx only, because the there was so little time between the various stages and the energy boost was something I have not read about. I am now two days without anything and the pain is only getting worse.
Hi Karel,
Yes! Just a fellow patient, as you know, but it sounds very much like the “synergy of everything” you took.
A few ideas:
- * stopping MTX cold turkey may produce rebound that may hit weeks to a month or so later.
* when I was using weekly bicillin IM shots, the herx hit exactly 3 days into use – massive. Oral Moxatag also produced same symptoms exactly 3 days in and this occurred on each occasion I used a penicillin.
* there are interactions between penicillins (especially long-acting) and tetracyclines – tetras reduce effectiveness of penicillins and aren’t usually prescribed together in high daily doses used for Lyme:
http://www.drugs.com/interactions-check.php?drug_list=1636-0,1815-3091
* looks like your combination approach – stopping MTX and starting penicillin, rocephin, minocycline and plaquenil, along with GSE has probably produced one mega herx. Rebound may not be an issue just yet, but it could also complicate the picture when serum levels wane.
* sounds like you’re hitting your bugs – very hard – and it’s working!
* if it was me, I’d working on detoxing right away and doing whatever I could to reduce inflam. The flood of toxins from dying bugs needs help to exit the body as swiftly as possible. It’s these toxins that cause the symptoms. See Encyclopedia Brittanica definition of “endotoxins” here:
Just fellow patient thoughts, Karel…sounds very similar to what happened to me. Not fun, I know…what are you doing to detox?
Thanks Maz!
I don’t understand why I felt so good for two days, and it came up as fast as it disappeared.
For detox I have been taking ALA and NAC an milk thistle on a daily basis one pill and drinking plenty of water. No other things right now.
I could consider: sauna (non infrared at my place), but glutathione (oral, try to keep costs low) lemon-cilantro drinks.
Anti inflammatory only curcumin (4 pils/day) and fishoil 2 table spoons to no effect. I could do NSAIDs (would be surprised if they do anything) or steroids (but that is very much against the possible lyme)You said long-acting penicillin’s. I have tried to find half life of these but no success. How long should I wait for re-introducing the Mino again?
Thanks so much for your ideas!!
(need to update signature)
@Karel wrote:
Thanks Maz!
I don’t understand why I felt so good for two days, and it came up as fast as it disappeared.
It’s what I started calling, “the honeymoon period!” I also had two or three days of thinking, “Hey, this is great, I’m feeling so much better – Eureka – it’s working!” and then, WHAM! All hell broke loose with the herxing. 😥 I can only guess that hitting the bugs stuns them initially, they die, and then the body is flooded with toxins that are felt at that 3-day mark. LLMDs like to see a well-defined herx like this, because it means they’re hitting the bug(s)…but the point at which the herx begins is variable with different people. Some LLMDs are now taking a more “softly-softly” approach, though, realizing that once the inflammatory cascade is set off in the rheumatic patient, it can be like a freight train that is hard to slow down (in alignment with Brown’s hypersensitivity/bacterial allergy theory). There is a fine balance with all this, because the reverse scenario is that if dosing is too low, inappropriate abx combos are being used (or just monotherapy) might just be pushing the bugs into bio-films and dormant cystic forms. You’re hitting everything at once (the pleomorphic forms and biofilms), so you will need to see how you go and it might need some big-gun detoxing. Hopefully, you’re working with an experienced LLMD who will be ready to advise you on this or provide you with some immune-support intervention if things get rough.
For detox I have been taking ALA and NAC an milk thistle on a daily basis one pill and drinking plenty of water. No other things right now. I could consider: sauna (non infrared at my place), but glutathione (oral, try to keep costs low) lemon-cilantro drinks. Anti inflammatory only curcumin (4 pils/day) and fishoil 2 table spoons to no effect. I could do NSAIDs (would be surprised if they do anything) or steroids (but that is very much against the possible lyme)
These are all good supportive adjuncts, but I personally found I needed to pull out some big guns at certain points.
You said long-acting penicillin’s. I have tried to find half life of these but no success. How long should I wait for re-introducing the Mino again?
Off-hand, I can’t remember this either (check with doc as there may be a good reason he’s prescribed your protocol in this way), but my LLMD usually wanted me to have a 2 week washout after stopping bicillin IM shots and re-commencing with a protocol that included tetras. I had the bicillin IM shots (weekly) for about 5 or 6 months in my first year and these were used with oral daily diflucan. Took about 6 to 8 weeks for the herx to settle down. Wikipedia has the long-acting antibiotic action of Bicillin_L-A as being 2 – 4 weeks. The minocycline will likely interfere with the bicillin’s effects as they’re antagonistic in this way.
Oh that sounds great to hear! Exactly my experience! Gives me new hope to go on with this. The IM treatment was a one time treatment as used by Lyme specialist Burrascano after the 6 weeks off to improve sensitivity of PCR/Antigen urine test. Igenex does not necessarily support this, but adds this provocation treatment as an suggestion to their kit read material. I will discuss the herx with my llmd and it might well just be that she suggest to continue this treatment. In addition to the IGX, she also want positive results on Labcorp WB, if possible, so she suggested the 200 mg Mino/day, 7 days a week for one more month. I have my doubts that it will actually change the WB since I was already 4 months on (admittedly less Mino 100 M/W/F). That’s why I added the GSE, which seems a pretty ‘harmless’ add on. Ok, I will wait a bit more with reintroduction of Mino and first see if the herx will slowly disappear. I will investigate the ‘big guns’ a bit more 🙂 ! Thank you so much!! K
Karel, just a quick note re: GSE. It may not be as innocuous as you think, especially if you take it with any meds that also affect the liver’s P450 cytochrome. It’s a good idea to always crosscheck any known supp actions with any potential drug interactions. E.g., GSE should not be used with diflucan or macrolide abx.
Thx for explaining about the penicillin challenge – interesting. I have read that abx used shortly after infection will abrogate Lyme results so wondering how a late stage challenge is different. Will have to look this up as you’ve got the old curiosity piqued!
Btw you know your llmd but pls don’t change anything she has suggested for you based on anything above! All we can do is share personal experience here and while we may eventually become experts when it comes to our own bodies, my experience may not be relevant in yours or anyone else’s. I know you know this but just thought to mention it as any med change should always get doc approval first. 😉
Super advise! Yes, its made from grapefruit and its cheap, but apparently very effective and not always harmless. Will improve my homework. 😀
@Maz wrote:
* sounds like you’re hitting your bugs – very hard – and it’s working!
* if it was me, I’d working on detoxing right away and doing whatever I could to reduce inflam. The flood of toxins from dying bugs needs help to exit the body as swiftly as possible. It’s these toxins that cause the symptoms. See Encyclopedia Brittanica definition of “endotoxins” here:
http://www.britannica.com/EBchecked/topic/187122/endotoxin%5B/list%5D
Just fellow patient thoughts, Karel…sounds very similar to what happened to me. Not fun, I know…what are you doing to detox?
Thanks, Karel, for your question, it’s really timely for me. I had great progress within weeks of starting AP but then spent a month wondering if I was insane for choosing this route! There was every indication the Zith was bombing the heck out of the little buggers and I was so happy about that but I forgot to consider the abundance of carcasses 😯 Month 2 was absolutely miserable because the toxins weren’t exiting swiftly and I hadn’t planned an escape route for them. Thanks to fellow APers and Maz’s detox advice, I found ways to help them on their merry way. The fastest and easiest was an Epsom salt bath, I felt better immediately. Two or three a week seems to work best for me during the herxes. I’m so used to feeling miserable, I forget that AP is a different road with solutions we can use that wouldn’t work with the side effects of traditional meds.
This was a wonderful exchange to read, I learned so much!
Feel better.
CaliDx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
SupplementsCalida, thank you!
Haven’t tried that yet, but already had the salt in home, so that should be easy :). I also spoke to my integrative medicine MD who is willing to administer me Meyers cocktails. Will have to read about it and see if it would benifit. Not sure if and how much insurance would cover. I did my blood work today. Curious if me, feeling bad, translates in any changes in liver function or bloodcount. Thanks for the tip!(need to update signature)
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