It’s Overwhelming

[Calida]

Happy Holidays and Happy New Year to All 😀

I think I’m slowly returning to the land of the living after about 10-12 weeks of exquisite suffering. It’s an odd term, but I don’t know what to make of the regression that started about October 6th, 6 months into AP. I think it was triggered by the banned Apotex Azithromycin change made by the local pharmacy a few weeks earlier but I was back on Teva by November 20th. The beautiful 6 month progress of short herxes and healing disappeared and it was as if the LDN, diet changes and AP had never happened.

Initially the old, familiar SD monster returned but it eventually morphed into severe burning and itching. It felt (feels) as if I had a severe, deep, painful sunburn but was wrapped in fiberglass insulation. It truly drove me insane, so much so that I hit absolute bottom and didn’t want to continue. Not suicidal in the literal sense, but I definitely lost my will to continue on any treatment path. The SD skin issues have disappeared again – not sure if it was switching back to Teva Zith or the addition of mino or both – but this itching-burning continues with a few hours or a break of a day or two between severe episodes. The photo sensitivity is worse than ever, causing vascular and tendon inflammation. I’m exhausted.

It’s overwhelming, it’s confusing. Can a herx last 3 months? I think something went terribly wrong…. 🙁

Cali

Dx: 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
Supplements

[Maz]

@Calida wrote:

I think I’m slowly returning to the land of the living after about 10-12 weeks of exquisite suffering. It’s an odd term, but I don’t know what to make of the regression that started about October 6th, 6 months into AP. I think it was triggered by the banned Apotex Azithromycin change made by the local pharmacy a few weeks earlier but I was back on Teva by November 20th. The beautiful 6 month progress of short herxes and healing disappeared and it was as if the LDN, diet changes and AP had never happened.

Can a herx last 3 months? I think something went terribly wrong…. 🙁

Hi Cali,

This period of regression for you sounds like it has sucked BIG time. I can equate, as my first year on high dose combination abx for the treatment of Lyme was just miserable, too. Quite apart from nearly every joint in my body being affected, I also had the skin burning, knife-like pain in my skin, as well as deep drilling, shooting pain in my long bones.

I’m not too clear about what you wrote above….so you switched from APO zith to Teva zith and added mino to the mix in November? Your sig line says you changed over to, “Minocycline (Teva generic) 100mg BID November 20, 2014,” which would only be about 6 or 7 weeks of mino, so far. If, so, then yes…any switch in protocol can lead to new rounds of herxing and this would be within the classic timeframe for it. You also mentioned in your sig line that you did a month of tinidazole in October, so all these changes can definitely have stirred things up. Tinidazole will treat babesiosis, has biofilm action and also hits borrelia cysts, while daily zith hits both spiral and L-forms. Only speculation, of course, based on your timeframes, but you’ve been whacking the bugs good and hard. When I did rounds of pulsing like this in my first year, switching things in and out to keep the bugs on the run, my labs improved, but my hypersensitivity (from all the die-off) grew to the point that I had to reduce my dose in my second year to low dose pulsing.

Just a couple of additional thoughts, noticed you’re taking 5-MTHF – for MTHFR methylation issues? Just thinking that with all this die-off, it might be worth discussing further ways to help with detox with Dr. M., especially right now. He’s provided me with a gut toxin binder and I also take antioxidative supports, like NAC and ALA.

With the lupus overlap, I’m also wondering if the Harvard Protocol may just be too much for you at the moment? Lupies, in general, tend to be extremely hypersensitive. This isn’t to say that Lyme doesn’t need daily dosing – it does, because it creates resistance (pushing it deeper into cystic form) if daily dosing isn’t used (and probably will create cystic forms anyway, even if these are fewer). There is a tipping point for some very hypersensitive people, though, where they have to decide upon quality of life – you know, “killing the bugs, not the patient.”

Did you look into possible trying something like Lyrica to help with the skin burning-itching, neuro symptoms?

Dr. M. runs my labs every 2 months…does he do that for you, too? If so, how are they looking? Any changes of late?

I had been wondering how you were doing, Cali, as we hadn’t seen you on this forum for a while. Certainly hope you are turning that corner now and that this new year will bring with it the renewed health you so deserve. Thing is, there are options to consider for tweaking the protocol, if necessary, so hope you don’t feel you must suffer in silence.

Hopefully, other here with similar diagnoses will chime in with what has helped them through this type of early rough patch. The forum archives are a wealth of info and you might also try running some searches on things you’re dealing with to see what others have done.

[Suzanne]

@Calida wrote:

I think it was triggered by the banned Apotex Azithromycin change made by the local pharmacy a few weeks earlier but I was back on Teva by November 20th.

Our pharmacy also went through an azithromycin shuffle a few months in a row. I don’t know what generated that, but it coincided with a few oddities my daughter experienced after months of stability. Our pharmacy also settled on Teva and she seems to be settled down as well.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[PhilC]

Hi Cali,

I noticed that you are on a rather high dose of azithromycin, especially considering that you are also on daily minocycline (supposedly, the two drugs act synergistically). I’ve noticed that many of the people taking azithromycin along with doxy or mino are taking either 250 mg or 500 mg of azithromycin on MWF only. By the way, in the case of azithromycin, this is not really considered to be a pulsed dose because of azithromycin’s long half-life (68 hours).

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[BG]

Cali,

Did the severe burning and itching start after you started taking mino in November?

The reason I ask is because I developed what you describe after being on a full dose of doxycycline for two weeks. When I cut back the dose to 100 mg once per day, taken at night, I no longer had the problem. Whenever I took a 100 mg dose in the morning or whenever I took 100 mg in the morning plus 100 mg at night, the problem returned. In my case, I deduced that the higher concentration of doxy in my system when taking a full dose plus exposure to sunlight after taking doxy in the morning whether taking 100 mg BID or just 100 mgs per day, when there would be a higher concentration of doxy in my system during the day when I’m exposed to sunlight, caused the problem. Tetracyclines and sunlight do not mix, especially for lupies! Also, lupies can develop serious problems (i. e. flare-ups of disease activity) taking mino. Doxy is missing a molecule and therefore is metabolized differently and is far safer for lupies to take.

Barb

[Calida]

@Maz wrote:

This period of regression for you sounds like it has sucked BIG time. I can equate, as my first year on high dose combination abx for the treatment of Lyme was just miserable, too.

I’m not too clear about what you wrote above….so you switched from APO zith to Teva zith and added mino to the mix in November? Your sig line says you changed over to, “Minocycline (Teva generic) 100mg BID November 20, 2014,” which would only be about 6 or 7 weeks of mino, so far. If, so, then yes…any switch in protocol can lead to new rounds of herxing and this would be within the classic timeframe for it.

Just a couple of additional thoughts, noticed you’re taking 5-MTHF – for MTHFR methylation issues? Just thinking that with all this die-off, it might be worth discussing further ways to help with detox with Dr. M., especially right now. He’s provided me with a gut toxin binder and I also take antioxidative supports, like NAC and ALA.

With the lupus overlap, I’m also wondering if the Harvard Protocol may just be too much for you at the moment? Lupies, in general, tend to be extremely hypersensitive. This isn’t to say that Lyme doesn’t need daily dosing – it does, because it creates resistance (pushing it deeper into cystic form) if daily dosing isn’t used (and probably will create cystic forms anyway, even if these are fewer). There is a tipping point for some very hypersensitive people, though, where they have to decide upon quality of life – you know, “killing the bugs, not the patient.”

Did you look into possible trying something like Lyrica to help with the skin burning-itching, neuro symptoms?

Dr. M. runs my labs every 2 months…does he do that for you, too? If so, how are they looking? Any changes of late?
.

Hi Maz! So happy to see you.

This has been a strange bump in the road and I know you’ve had your share of those! I was having a textbook recovery at the 6 month mark, heading towards healing and remission the way so many others described. In fact, my oil and sweat glands, as well as hair follicles, healed completely for the first time since the disease appeared. Suddenly everything changed the week of October 6th and, to this day, glands and follicles have not recovered again. This flare or regression has lasted 3 months and the damage and symptoms appeared before Tinidazole and Minocycline were added to the protocol. I don’t know if the Tinidazole did anything -I was only on it (pulsed) for about 6 weeks and it didn’t make things worse or better. Dr. M. told me to discontinue that med and started the mino on November 20th. Either the mino is helping or the damage done by the Apotex Zith is healing and the Teva Zith (which was my original formula) is working as it did the first time though not as well. I am happy that the scleroderma skin problems that were returning to my face and body have disappeared again.

Dr. M started my antibiotic treatment with Zith and the pharmacy filled the script with the Teva generic. It was a successful treatment until Rite Aid switched the Teva generic with the Apotex generic around September 1st. After I crashed and burned that second week of October, I finally realized the only change had been that and I found out that Apotex Zith has an FDA Red Alert, it’s been banned from the US since April 1st. Rite Aid refilled the script with Teva Zith on October 20th.

I just confused myself with that recap so I hope it’s clear to you! 😆

Anyway, Dr. M. added 5-MTHF after labs showed low folate. I don’t want to test for anything else. If one more diagnosis is added to this mess I swear I’ll blow my brains out. All I’ve ever wanted was Dr. Brown’s protocol or the Harvard Protocol. I accept that the Lyme complicates things but I still believe minocycline is the key. Zith was working beautifully, though, and Artimisinin makes sense, just as Plaquenil does for others.

September was a beautiful month for me and I felt better than I had in years. Antibiotics were working the way Dr. Brown proved they would and I want that back. My skin had healed, I had more energy and strength and less photosensitivity and pain. If I had that once I know I can get it back again. I must be very sensitive but I think I can handle the Harvard protocol and I’m anxious to have minocycline take the lead role in this protocol. I trust Dr. M completely but I hope he will adjust the protocol when I see him on the 20th so that one antibiotic is pulsed instead of full doses of both Zith and mino daily. I have a feeling he’ll do something like that because he’s always ahead of the game. We just never factored in that Apotex garbage.

Thank you for the Lyrica and detox advice. I’ll ask Dr. M if he can help with that. I can’t see my sig line as I write this so I’m not sure if Nystatin is listed – I forget things a lot 😯 – but Dr. M added that in June, I think as a precaution. The November labs came back with elevated AST 52 (0-40) and ALT 82 (0-32) so I am a bit worried about the liver and wonder if this severe itching is related. The labs also showed low vitamin D, no surprise because an allergic reaction to the sun was one of my first symptoms. Supplemental D3 has made me ill in the past so I try to get the D through diet. Everything else is within range.

I hope the Holidays were beautiful for you and your family and that all is well…

Cali

Dx: 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
Supplements

[Calida]

@Suzanne wrote:

@Calida wrote:

I think it was triggered by the banned Apotex Azithromycin change made by the local pharmacy a few weeks earlier but I was back on Teva by November 20th.

Our pharmacy also went through an azithromycin shuffle a few months in a row. I don’t know what generated that, but it coincided with a few oddities my daughter experienced after months of stability. Our pharmacy also settled on Teva and she seems to be settled down as well.

Suzanne, I can’t imagine going through this as a mother. Is your pharmacy a national chain? They must know that there are quality differences among the generics, especially those made in China and India. I’m so happy your daughter is doing well, I hope she didn’t lose any ground.

Dx: 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
Supplements

[Calida]

@PhilC wrote:

Hi Cali,

I noticed that you are on a rather high dose of azithromycin, especially considering that you are also on daily minocycline (supposedly, the two drugs act synergistically). I’ve noticed that many of the people taking azithromycin along with doxy or mino are taking either 250 mg or 500 mg of azithromycin on MWF only. By the way, in the case of azithromycin, this is not really considered to be a pulsed dose because of azithromycin’s long half-life (68 hours).

Phil

Hi Phil,

I know, I’ve seen the varied doses and days when others use more than one antibiotic, too, and wondered about that. Because I have a lupus/scleroderma/Lyme combination, I’m never sure how the protocols used by others apply to me but I think the one I’m on right now is too much. I’m surprised Zith has such a long half-life and I do hope the doctor reduces the dosage. Thanks, again,for giving me something to think about.

All the best
Cali

Dx: 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
Supplements

[Calida]

@BG wrote:

Cali,

Did the severe burning and itching start after you started taking mino in November?

The reason I ask is because I developed what you describe after being on a full dose of doxycycline for two weeks. When I cut back the dose to 100 mg once per day, taken at night, I no longer had the problem. Whenever I took a 100 mg dose in the morning or whenever I took 100 mg in the morning plus 100 mg at night, the problem returned. In my case, I deduced that the higher concentration of doxy in my system when taking a full dose plus exposure to sunlight after taking doxy in the morning whether taking 100 mg BID or just 100 mgs per day, when there would be a higher concentration of doxy in my system during the day when I’m exposed to sunlight, caused the problem. Tetracyclines and sunlight do not mix, especially for lupies! Also, lupies can develop serious problems (i. e. flare-ups of disease activity) taking mino. Doxy is missing a molecule and therefore is metabolized differently and is far safer for lupies to take.

Barb

Hi Barb,

I’m so sorry you had to deal with that but it’s nice to know you found the solution! I know something is causing this severe burning and itching but I’m not sure if it’s one of the meds or part of a flare/herxing reaction. It started before I started mino so I think I’m ok with mino right now – I hope – but I guess it could be exacerbating the problem. I think there was something very wrong with the Apotex Zith but I’ve been off that now for over 2 months so I can’t blame that too much longer. Any exposure to sunlight (fluorescent lights are worse) triggers an immediate inflammatory response so the last thing I need is to take a medication that makes that worse. Just walking into my kitchen, which has a southern and western exposure, can be painful when I’m going through a flare or herx.

Thank you for the doxy explanation. I need to be ready to jump to doxy if mino causes problems and I like to understand the how and why.

All the best
Cali

Dx: 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
Supplements

[Suzanne]

@Calida wrote:

Suzanne, I can’t imagine going through this as a mother. Is your pharmacy a national chain? They must know that there are quality differences among the generics, especially those made in China and India. I’m so happy your daughter is doing well, I hope she didn’t lose any ground.

We use an independent pharmacy and they have been wonderful over the years. I think they were changing suppliers or something. They told me if necessary, they would find whatever brand I requested, but that there would be no more changes as far as their “standard” generic anymore.

I don’t think she lost any ground. The hard part as a mother is trying to figure out what is going on! Is it normal from gym class or something more, etc. More days like that when the brands were changing.

Mom of teen daughter with Poly JIA since age 2. Current med: azithromycin 250 mg MWF.

[Maz]

@Calida wrote:

Hi Maz! So happy to see you.

Always lovely to hear from you, Calida! 🙂

This flare or regression has lasted 3 months and the damage and symptoms appeared before Tinidazole and Minocycline were added to the protocol. I don’t know if the Tinidazole did anything -I was only on it (pulsed) for about 6 weeks and it didn’t make things worse or better

.

Just a guess, but LLMDs like to see herxes, so if nothing was worse or better, then he probably figured it wasn’t going to happen. Hard to know what the rationale was, because sometimes these docs have a plan in mind…perhaps to deal with one potential before another.

Dr. M. told me to discontinue that med and started the mino on November 20th. Either the mino is helping or the damage done by the Apotex Zith is healing and the Teva Zith (which was my original formula) is working as it did the first time though not as well. I am happy that the scleroderma skin problems that were returning to my face and body have disappeared again.

The skin clearing is a wonderful sign! 🙂 With SD, mino the optimal treatment. With lupus overlap, the dosing becomes the variable that is harder to decipher. Let’s hope Dr. M. is open to lowering the dose per Brown. Patient experience has shown that in most cases, the lower pulsed dosing regimen isn’t always optimal for the SD, but if life is unbearable with the light sensitivity and other neuro issues (if due to higher dosing and not disease symptoms), it might be the only way to go for now, perhaps gradually increasing later down the road to tolerability. The only way to know if it’s a disease flare (which can and do still happen while on abx) or due to dosing is try a different dosing regimen.

Dr. M started my antibiotic treatment with Zith and the pharmacy filled the script with the Teva generic. It was a successful treatment until Rite Aid switched the Teva generic with the Apotex generic around September 1st. After I crashed and burned that second week of October, I finally realized the only change had been that and I found out that Apotex Zith has an FDA Red Alert, it’s been banned from the US since April 1st. Rite Aid refilled the script with Teva Zith on October 20th.

This is just a hunch, but as the Apo zith is well out of your system now, it’s possible that the generic had something to do with triggering a flare (or something else, like a seasonal flare, hormonal or stress flare, etc), but if you were on the same Teva zith dose as before, then it makes less sense that it would be the dose now, unless there is something else going on, like candida overgrowth. You mentioned being on Nystatin, so it’s less likely it’s that, but still might be worth testing.

I just confused myself with that recap so I hope it’s clear to you! 😆

Think so! If not, probably my interpretation!

Anyway, Dr. M. added 5-MTHF after labs showed low folate. I don’t want to test for anything else. If one more diagnosis is added to this mess I swear I’ll blow my brains out. All I’ve ever wanted was Dr. Brown’s protocol or the Harvard Protocol. I accept that the Lyme complicates things but I still believe minocycline is the key. Zith was working beautifully, though, and Artimisinin makes sense, just as Plaquenil does for others.

Know exactly how you feel! The MTHFR gene mutation thing is really important to figure out, if only to learn if one is a candidate for methotrexate or not, a drug that interferes with folate. I’m guessing that the 5-MTHF sup will be a critical piece of your picture in terms of detox issues. The mino is very critical, but being able to help your body get rid of toxins from dying bugs is pretty important, too, especially with neuro probs that could be exacerbated by neuro-toxicity. Note that I’m just saying “could,” “might,” “may,” because everyone’s situation is unique and these are just fellow patient speculations to talk with the doc about. Fortunately, Dr. M. is right on board with detoxification, so he’s well-versed in all that entails.

September was a beautiful month for me and I felt better than I had in years. Antibiotics were working the way Dr. Brown proved they would and I want that back. My skin had healed, I had more energy and strength and less photosensitivity and pain. If I had that once I know I can get it back again.

I’m right on board with your hopes and think it’s very attainable again. Whatever caused this flare may remain a mystery or there are suspected culprits, but the bottom line is that flares can and do continue with abx therapy. It’s just the way things go with the treatment, but these should become fewer in number, shorter in duration and less intense over time. It’s hasn’t been a full year yet for you, so relatively speaking, this is still very early days. So, as awful as these flares can be, try not to lose hope. There is every chance that this is just a blip on the radar and things will even out again. It is a bit of a 3 step fwd and 2 step back dance all the way to remission.

I must be very sensitive but I think I can handle the Harvard protocol and I’m anxious to have minocycline take the lead role in this protocol. I trust Dr. M completely but I hope he will adjust the protocol when I see him on the 20th so that one antibiotic is pulsed instead of full doses of both Zith and mino daily. I have a feeling he’ll do something like that because he’s always ahead of the game. We just never factored in that Apotex garbage.

The great thing about Dr. M. is that he’s more au-fait than most docs with Dr. Brown’s work and he’s a very open guy and easy to partner with. He’ll explain why he thinks something may be better or worse for a patient and he’s said to me that he’s open to trying anything that might help a patient, as long as the benefits outweigh any risk.

Thank you for the Lyrica and detox advice. I’ll ask Dr. M if he can help with that. I can’t see my sig line as I write this so I’m not sure if Nystatin is listed – I forget things a lot 😯 – but Dr. M added that in June, I think as a precaution. The November labs came back with elevated AST 52 (0-40) and ALT 82 (0-32) so I am a bit worried about the liver and wonder if this severe itching is related. The labs also showed low vitamin D, no surprise because an allergic reaction to the sun was one of my first symptoms. Supplemental D3 has made me ill in the past so I try to get the D through diet. Everything else is within range.

The photosensitivity and Vit D may well be related. As you’ve got elevated liver enzymes right now, adding another drug may not be wise (i.e. Lyrica). Are you taking milk thistle, Calida, as a regular supplement? If not, perhaps you could ask Dr. M. if it’s okay to add this. Not only is it helpful for liver detox, but should help to lower liver enzymes. In fact, if he thinks you’re okay to do this, he may even give you his protocol for doing a liver flush. Again, just a hunch, but the liver enzymes could also be pointing to detox issues and building neurotoxicity as a result.

Anyway, just some ideas to mull over with Dr M. – keep reminding yourself that it’s still early days and there’s plenty of room for tweaking things yet, Calida, so keep the faith!

[Lynne G.SD]

Oh you poor kid! I remember those days all too well but that was over a decade ago.I never did the Marshall protocol but did order the NoIR glasses and they took care of my photosensitivety completely and I did not stay out of the sun in a big way.I was just careful
So do you also have the MTHFR mutation also? I had Christmas brunch with my girls and they informed me that I have it SURPRISE as they have the double mutation and that can only come from both parents.I told Maz that I was seeing my AP doc and this is what she now has me taking.Maybe of some help????????
>> Hi Maz;
>> I told you I would let you know what Dr. A had to say re MTHFR.I copy this message to Pierluigi as he might be interested also as there is always something to learn.
>> She said that she expects that people who have low B12 probably have this genetic fault,maybe form just one or both parents.It is easy to correct the problem but we have to stay on these supplements,probably for life and surely if we are aging.
>> Multi B 100 ! capsule
>> B12 methyl cobalamine1000mg sublingual 2 in the morning,2 in the evening
>> Folmic acid 1000mcg 2 a day
>> DMG(Di methyl Glycine) 500mg 2 in the morning,2 at night
>>
>> She told me that I should make Horsetail tea,dang stuff grows everywhere,especially in my flower beds 5 cups a day ,it pulls out aluminium which is the most abundant unwanted mineral in our bodies,and to mix with a little Stevia powder.This combo breaks up biofilms even better than Serrapeptase
>>
>> Other supplements
>> Vit C 100mg
>> Zinc Citrate 100mg
>> Mixed minerals by Sisu 3 capsules
>> N Acetyl Cystane 500mg 2 times a dayto protect lungs and it can kill C. Pneumonia at a dose of 1000to1200 mg twice a day
>> Primrose oil500mg 2 times a day,this makes the Serrapeptase work better
>> Serrapeptase 3 capsules a day
>> Omega 3 from Krill oil
>> Lots of probiotics
>>
>> She also has me on Olmetec 40mg 4 times a day and I can use the antibiotic that I think is most effective or a combo.She agrees that I know what is best for me and that I can now pulse when I feel it’s right.She agrees that a few days off antibiotics works just fine at this stage of treatment.
>> example Today I took metronidazole 250mg,none tomorrow and doing this song and dance for 10 days.Then resume mino for 2 days at 100mg a day then off for 2 She says pulsing often works much more effectively
>>
>

[Calida]

@Maz wrote:

This is just a hunch, but as the Apo zith is well out of your system now, it’s possible that the generic had something to do with triggering a flare (or something else, like a seasonal flare, hormonal or stress flare, etc), but if you were on the same Teva zith dose as before, then it makes less sense that it would be the dose now, unless there is something else going on, like candida overgrowth. You mentioned being on Nystatin, so it’s less likely it’s that, but still might be worth testing.

Maz, do you think 6 weeks of ineffective Apo could have not only caused regression but triggered additional (new) problems? I felt as if the prison guards walked off the job and the inmates destroyed the prison. I wasn’t stressed at the time, physically or emotionally, but there was a sudden hormonal change so I’m looking at that, too. This intractable deep itching is a brand new symptom.

I’m guessing that the 5-MTHF sup will be a critical piece of your picture in terms of detox issues. The mino is very critical, but being able to help your body get rid of toxins from dying bugs is pretty important, too, especially with neuro probs that could be exacerbated by neuro-toxicity. Note that I’m just saying “could,” “might,” “may,” because everyone’s situation is unique and these are just fellow patient speculations to talk with the doc about. Fortunately, Dr. M. is right on board with detoxification, so he’s well-versed in all that entails.

I think you’re so right about that. The sudden cessation of perspiration (in Oct.) combined with the severe inflammation and the return of an effective Zith must have jammed the detox channels and caused toxicity. I know I need Dr.M’s help with upping the detox process. I tried the lemon-olive oil drink but it makes me do a spastic dance, as if Tourette’s joined the list of problems. I can’t use a far infrared sauna due to my light sensitivity so I’m left with the baths and glutathione and a few I haven’t tried yet.

The photosensitivity and Vit D may well be related. As you’ve got elevated liver enzymes right now, adding another drug may not be wise (i.e. Lyrica). Are you taking milk thistle, Calida, as a regular supplement? If not, perhaps you could ask Dr. M. if it’s okay to add this. Not only is it helpful for liver detox, but should help to lower liver enzymes. In fact, if he thinks you’re okay to do this, he may even give you his protocol for doing a liver flush. Again, just a hunch, but the liver enzymes could also be pointing to detox issues and building neurotoxicity as a result.

I believe the D and photosensitivity are related and it’s the severe UV sensitivity that has kept me housebound and away from lighting sources for over 18 months. The year prior to becoming ill, the doctor said she wasn’t happy with my D levels (they were within normal range but at the low end) and told me to take 20,000 units a day for a month as a “loading dose” and decreased that to 5000 daily maintenance. I’ve since read – a study, article? can’t remember- that supplemental D blocks the receptors and prevents the natural form from reaching the cells. I’m so sorry I don’t have the link to that info, I hate to just throw it out like that, so I will try to find it and post it here later. I found it interesting but I’m sure there must be more to the story. But, at the very least, the large doses of D3 may have caused problems for me.

Milk thistle sounds like something I should start soon but I’ll be patient and wait for the doctor’s ok. I have been spared organ involvement and want to protect the liver.

My brain is still fogged in and fizzing out right now. Thank you so much for responding 🙂

Dx: 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
Supplements

[Calida]

@Lynne G./SD wrote:

Oh you poor kid! I remember those days all too well….

Thanks, Lynne!

So do you also have the MTHFR mutation also? I had Christmas brunch with my girls and they informed me that I have it SURPRISE as they have the double mutation and that can only come from both parents.

I’m not sure but I wouldn’t be surprised. I hope your girls never have to deal with problems because of the mutation.

I told Maz that I was seeing my AP doc and this is what she now has me taking.Maybe of some help????????

Lynne, do you think I would need to add all of those supplements to correct the problem?

Dx: 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
Supplements

[Lynne G.SD]

Only the first 4 B supplements are for the MTHFR,the others are for the SD and Lyme.Since you seem to be following in my footprints I would expect your doc has you on something similar,no?

[Author]

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