started Mino – advise please??

[lorena9]

Hello: I was diagnosed with Palindromic RA 4 years ago – and took plaquenyl ( 100mg) a day, although I resisted taking “meds ” for a long while. I stopped this after a year because of eye disturbances a year ago. After educating my self a bit with Roadback foundation I decided to ask my GP for antibiotics. I live in London and my GP started me on Mino at 50mg twice a week, as I told him I was sensitive to medication. I have been on them for 2 months.
My symptoms as a whole have been traveling joint pain, swelling and hot on the spot, but also exhaustion and muscle pain all over, swelling neck glands… skin burning sensation and tingling off and on…
Thankfully Lynnie recommended I get tested for Lyme, the IgM Western Blot, which came back positive. Rheumatoid factor is positive – CRP also positive – Immunology showed recent exposure to Mocoplsma pneumoniae ( high level of antibodies) and elevated antibodies for Epstein Barr Virus. The clinic i found here which tested me recently recommends I go on Mino 200mg everyday. That i would need to get blood work done every months minimum to monitor toxicity in liver and kidneys. The doctor at this clinic also wants me to follow an “immunotherapy testing” for the gut as I have leaky gut/ and an elevated immunoblobulin A which I guess means my gut is fighting either an infection or allergies. Has anyone heard of this?? the last thing I want to take on is this at home low dose immunotherapy vaccines ( or antigen vaccines??)
My feeling is that if my gut is fighting it is because i have had bacteria and parasites and yeast and candida in the past.. And most likely still do.
Anyway did not want to diverge, but as I rather not continue at this clinic, i will go back to my GP to get a higher dosage of the MIno in light of the LYME. I would appreciate any input on the dosage requirement. I do feel 200 aday is a lot, but I read that this is the protocol for lyme with RA. Also i have begun having visual disturbances again, and wonder if the low dose of mino is doing this – SO could it be the lyme causing these eye problems? Having said that I noticed that once off the plaquenyl my eyes resumed to normal… Now once again I am light sensitive and things tend to get blurry . Has anyone experienced this with Mino?? ALso doctor at clinic wants to add Artesunate, another anti-malerial to the protocol. Any thoughts??
For supplements I take fish oil, NT factor Gold ( for cell conversion efficiency) vitamin D -probiotic and progreens.
Thank you for taking the time to read this. Lynnie thank you for suggesting I take the Lyme test ( this was a few months back)
I am not sure what I am asking but just maybe some feedback as there is only one doctor here in London that deals with this but the clinic is far and I am not crazy about ” a contract” to only be seen by them, and get my meds including Mino from them…There doesn’t seem to be much room for flexibiltiy. And I am reticent of doing this immunotherapy on top of the AP not to mention that it will cost over $4,000 dollars.. It makes me feel a bit trapped and would rather work with my GP here. Many thanks.

[Maz]

@lorena9 wrote:

Anyway did not want to diverge, but as I rather not continue at this clinic, i will go back to my GP to get a higher dosage of the MIno in light of the LYME. I would appreciate any input on the dosage requirement. I do feel 200 aday is a lot, but I read that this is the protocol for lyme with RA. Also i have begun having visual disturbances again, and wonder if the low dose of mino is doing this – SO could it be the lyme causing these eye problems? Having said that I noticed that once off the plaquenyl my eyes resumed to normal… Now once again I am light sensitive and things tend to get blurry . Has anyone experienced this with Mino?? ALso doctor at clinic wants to add Artesunate, another anti-malerial to the protocol. Any thoughts??
For supplements I take fish oil, NT factor Gold ( for cell conversion efficiency) vitamin D -probiotic and progreens.

Hi Lorena,

Great job getting the Lyme testing run….standard or IGeneX testing?

Chronic Lyme treatments are pretty complex and usually don’t consist of just one abx, but several in combination. This is because the Lyme bug is a tricky one and is very pleomorphic, a shape-shifter, that requires different anti-microbials to target its various forms. For example, hitting just the cell-walled form may drive it further into dormant cystic form. Or, hitting it with low dose bacteriostatics (e.g. minocycline), might just push it into protective bio-film.

The other thing about “Lyme” is that many experienced LLMDs are no longer calling it “Lyme,” but “Mixed Systemic Infectious Diseases Syndrome,” or MSIDs, because they recognize that while Lyme is a pretty nasty bug and takes out immunity, ticks pass other coinfections, and when immunity is compromised like this, other latent infections that we harbor within us, also become opportunistic. The following video sort of explains this is simplistic terms, but its helpful to understand how these other bugs hop on the band-wagon and make the “Lyme” picture so complex:

http://www.envita.com/conditions-we-treat/lymedisease

The challenge for UKers is to find a LLMD (Lyme Literate MD) who can treat in this way for the long haul. So, my suggestion to you would be to contact the Tickborne Diseases Alliance here in the US to see if they have any new listings for UK. The ILADs organisation had a Lyme conference in UK a year or so ago and it may have attracted new doctors of which we are yet unaware.

http://www.tbdalliance.org/diagnosing-tbds/find-a-medical-professional

There are also some UK patient advocacy groups listed here:

http://www.lymenet.org/SupportGroups/Europe/

Would also suggest printing out and reading the ILADs and Burrascano diagnostic and treatment guidelines here, which you could also give to your GP:

http://www.ilads.org/lyme_disease/treatment_guidelines.html

There are LLMDs here in the US with whom your doctor could consult, if you also ask the Tickborne Diseases Alliance for help with this when you jot them a line.

Would also suggest reading a copy of “Cure Unknown,” by Pamela Weintraub, and watching a free online video documentary, called “Under Our Skin,” both great resources for getting acquainted with the politics behind this disease:

http://www.cureunknown.com

http://www.hulu.com/watch/268761

Yes, visual disturbances are common Lyme symptoms and light sensitivity and blurred vision are very common neurological effects. I was also on Plaquenil, which is an anti-malarial, and commonly used for Lyme patients. I also had some visual disturbances in after about 5 months of its use in my first year of treatment (optical migraines causing jagged arc-like flashing lights and blurry blind spots in central vision for about 10 or 20 mins), so I stopped the plaquenil and never had the problem again. I re-tried plaquenil again a couple years later and was fine the second time around (though I stopped after about 5 months again due to intestinal gas problems). One of the common coinfections of Lyme is babesiosis, a protozoan piroplasm, that can cause a whole lot of symptoms, including anemia, air hunger, sweats, chills, and some other serious things, like autoimmmune hemolytic anemia, etc – (see list in ILADs/Burrascano guidelines above). Plaquenil is also thought to have some Lyme cyst-busting properties. So, it’s kind of interesting that it affected my vision in my first year, but not later, when I had been on other Lyme treatments for a while…could it be that it was some kind of die-off reaction first time around?

Minocycline can cause some early vestibular symptoms (vertigo, nausea, etc…a bit like motion-sickness), which is why some LLMDs prefer to use doxycycline or tetracycline, which can be taken in the higher doses needed for Lyme, but doesn’t produce these effects. It’s thought that minocycline has higher lipid solubility, so is more effective at crossing the blood-brain barrier and perhaps this has something to do with nervous system irritation (perhaps die-off? Minocycline is neuro-protective and is being used for MS and post-stroke). In my first year, I was on a combo of tetracycline (750mg BID), clarithromycin (500mg BID) and plaquenil (100mg BID), but did move on to different treatments, including penicillin IM shots and Diflucan. It’s been a long journey…

Currently, I’m on a mixture of anti-protozoal meds and anti-oxidative strategies, as I was also found to have Protomyxozoa rheumatica, another type of protozoan that is highly inflammatory and hangs out in the lining of blood vessels in bio-film. So, I am taking liposomal artemisinin. Artemisinin is the Chinese herb, Qinghaosu (sweet wormwood), and needs to be given in a liposomal format in order to break through the bio-film of P. rheumatica, which thrives on lipids. The bio-film sucks up the fat and then the artemisinin acts like a kind of smart bomb, homing in on iron-rich cells (infected red blood cells and cancers) and blasts them apart. It needs to be taken cautiously, because bugs can build up resistance quickly, but also can cause some neuro-toxicity, which are a couple reasons why it is pulsed. Artensuate is a semi-synthetic derivative of artemisin that is water-soluble. They have studied artemisinin in relation to rheumatoid arthritis, if you’re interested to read about this:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2275452/

http://en.wikipedia.org/wiki/Artemisinin

http://en.wikipedia.org/wiki/Artesunate

What I tend to do is to research every medication I’m taking to ensure I’m aware of side-effects, drug-interactions and their effects of bugs being targeted. It just makes it easier to make an informed choice in my treatment, but it also helps the most to be working with a doctor who is invested in helping their patients, knows what they’re doing and who will monitor things closely. Some folks do really well on Lyme treatments and get well quite swiftly, but others may take years…and by some estimates it can take as long to turn around these infections as one has had them. Sometimes, we just don’t know how long we’ve had them! Age, strength of immune function, being male or female, hormones, pathogen load, pathogen mix, ability to detox, life-style choices, stressors, surgeries, acute infections, etc, can all have an effect on how long it takes a person to get well again, too.

I once listened to an experienced LLMD speaking about Lyme (there was a video of this doc talking on the subject but it’s no longer on that particular Lyme site unfortunately) and he said that migrating arthralgias and myalgias are classic for Lyme disease and that he knew of no other infection that could cause this. Palindromic RA pretty much fits this picture.

It’s great that Lynnie pointed you in the direction to begin figuring all this out, Lorena. As a sufferer of PRA, herself, also originally from UK, she has some good experience in this area, too, and am sure she will be able to support you by sharing her own experience as time goes on.

It’s nice to meet you and just sorry you had to seek us out (as we tend to say around here). 😉

[lorena9]

Dear Maz: just a quick thank you for your helpful and extremely informative response. Apart from living most of the year in London, i have a home in Massachusetts ( where I most likely got lyme) I will look at some LLMD ( a new term for me) in Mass.
It seems though that the whole process might not be as easy as it once seemed. When I tell people, oh I have been diagnosed with Lyme the response is usually ” thank goodness – all you have to do is pop a few antibiotics and you will be cured!!”
I am taking Mino now (for RA) until i see an LLMD who hopefully can look at the whole picture ( including RA) My question is: i was on 100 mg a week ( 2X50mg a week) for two months now, and I am just beginning augmenting it to 100 mg MWF. Should I do this gradually as in maybe 50 mg MWF? As i said i am noticing blurry vision- which I think is from the mino.
Anyway, i read your testimonial and what difficult journey you had. I am impressed by how you successfully manage it all!!
Best, Lorena

[Anonymous]

@lorena9 wrote:

Dear Maz: just a quick thank you for your helpful and extremely informative response.

That was quite some extensive and complete response, as always! Thanks Maz.

[Maz]

@lorena9 wrote:

Apart from living most of the year in London, i have a home in Massachusetts ( where I most likely got lyme) I will look at some LLMD ( a new term for me) in Mass.
It seems though that the whole process might not be as easy as it once seemed. When I tell people, oh I have been diagnosed with Lyme the response is usually ” thank goodness – all you have to do is pop a few antibiotics and you will be cured!!”
I am taking Mino now (for RA) until i see an LLMD who hopefully can look at the whole picture ( including RA) My question is: i was on 100 mg a week ( 2X50mg a week) for two months now, and I am just beginning augmenting it to 100 mg MWF. Should I do this gradually as in maybe 50 mg MWF? As i said i am noticing blurry vision- which I think is from the mino.

Lorena, that’s wonderful that you also live in MA! This bodes well for finding a LLMD who can treat you as you deserve! I can send you the LLMD that we have for MA, but would also suggest contacting the Tickborne Diseases Alliance to ask them for a full up-to-date listing, because they have no doubt added new docs of which we are yet unaware. I just added a couple new ones in Rhode Island based on patient feedback we’d received. Our lists are primarily peer-maintained, unless a physician actually contacts us to add them (rare).

For Lyme, the dose you were initially on would be classed as “prophylaxis” for Lyme…this is the sort of dose one might get from a regular GP who would give one or two capsules just in case someone has been infected right after a tick bite. This is a really controversial practice in the Lyme-lands, because (a) it’s probably not nearly enough for someone who has been infected with any acute infection and (b) is thought to abrogate Lyme test results which may well show up negative when a person winds up with chronic symptoms later and then told they can’t have Lyme, because they have had the prophylaxis treatment. 🙁

I wish I could offer you insight on how to go about dosing until you are able to consult a LLMD, Lorena, but I’m just a fellow patient and I would not like to lead you astray. I only have my own personal experience to go by. Dr. Brown was actually treating mycoplasma infections, which are slow-growing and slow-replicating infections that he felt did not require daily dosing. If you manage to get a copy of The New Arthritis Breakthrough, by Henry Scammell, however, you’ll find a chapter in their, by Dr. Brown (this book includes his original book, The Road Back), where he discusses Lyme disease. In the 1980s, when Brown wrote this chapter, not a great deal was known about Lyme, as the borrelial spirochete had only been identified by Willy Burgdorfer as the causative pathogen of Lyme. He did comment that antibiotic protocols needed to be much higher in dose for this infection, though.

Unfortunately, in the case of Lyme, the herxing can be quite challenging to move through. In rheumatic patients, the herx presents as a worsening of existing symptoms and increased systemic inflammation, but when there is also neurological involvement, it can also make this feel much worse, too. As just a patient, I can’t tell you if the blurry vision is a result of herxing (die-off) or whether it is a part of any neuro-involvement you may have with your Lyme mix. I can tell you, that experienced LLMDs are pretty au-fait with how to treat the symptoms of Lyme and identifying which pathogens may be causing these. They are also pretty well-versed in which abx combinations should be used to hit as many things at once as possible.

Rheumatic/Lyme patients have a really rough time balancing doses with herxing. My first year on Lyme protocols was pretty bad, but I was also very severe and I always tell folks not to compare themselves to my road back. The basic mechanism that Brown described (bacterial allergy) in rheumatics applies to RA/Lyme patients, too, though. The way he describes this in the Scammell book is fascinating…essentially, it’s not the bugs, but their toxins (antigens) that cause rheumatic tissues all the problems. So, his approach was to go low and slow and keep life as tolerable as possible for the patient, because to create too much die-off with heavier doses would lead to higher levels of bound immune-complexes that essentially just switches on the inflammatory cascade that is very hard to turn the dimmer down on (without a lot of detoxing, that is). The problem with chronic Lyme is that the usual LLMD approach is to hit it hard and fast to get as many of the bugs killed off as possible, as it is just so pleomorphic (shape-shifting and lower doses in recent research has just shown that low dose doxy pushes spirochetes further into protective biofilm colonies, thereby just suppressing the infection for it to re-emerge later when the coast is clear). Although, as time goes on, it does seem that some LLMDs are beginning to take a modified approach, realizing that patients also need some quality of life while they’re undergoing treatment, so trying to keep herxing (which seems to come in monthly rounds for Lymies due to life cycle of the bug) as tolerable as possible.

If Lyme (and other tickborne coinfections) is caught early and treated effectively, then most folks recover well – even in the case of those caught later, it’s been said that 90% will do well in recovery with longer treatments. If it’s not caught early enough, treated inadequately or folks have other pre-disposing factors leading to “autoimmunity” (genetic haplotypes, or other things as mentioned above in first post), then it’s estimated that about 10% of those folks will have chronic problems requiring long-term treatment. In the conventional world, symptoms that persist past the conventionally-recommmended treatment for Lyme is called, “post-Lyme syndrome,” for which they say nothing can be done, or a person is just diagnosed with an “autoimmune” disease and put on immune-suppressants for life. When I first got a confirmed diagnosis of Lyme by my first LLMD, I asked him, “So, what is it? Is it Lyme or RA?” He told me that it wasn’t an either/or situation, but both. On the hopeful side of this, though, he also said that when I got the infections controlled my RA should begin to remit. LLMDs don’t really see RA lab markers (anti-CCP and RF) as “autoimmune” markers, but markers of infection and how hard the body is working to target these infections. There is quite a bit of emerging science now that is bearing this out to be true…e.g. that some bugs cause the process of citrullination (see following video: http://medicine.med.nyu.edu/education/grand-rounds/mgr-jose-scher-md-video). Whichever way one approaches treatment, RA is a chronic, disabling disease, so either approach to treatment (conventional treatments to suppress immune function or antibiotic therapy to treat infectious causes) should probably be considered as a long-term project. In some cases (mild, early disease), it is short and sweet, too, though – everyone’s road back is unique. 😉

Re: your dosing question – in brief, while I can’t offer dosage advice, the bottom line is that for Lyme treatments, the dosing would be daily and quite high. For treating mycoplasma, however, the dosing would be as Brown described – low and pulsed, as you are planning to do. Tolerability has it’s place, too, though, so finding an effective, tolerable dose and working up to that seems to be what many try to do here.

If you’d like me to send you the MA LLMD listing that we currently have on file, I’d be happy to do that. I currently see a really fine LLMD in Berlin, CT, but there are a few in MA and RI, too. Worth being forewarned, however – LLMDs are offering a different standard of care for the treatment of chronic Lyme infections, so these are not covered by insurance carriers. I get my labs and most of my meds covered, but I pay out-of-pocket for my two-monthly consults and any integrative treatments I choose (e.g. Myer’s Cocktails for detoxing). When you get a chance to watch Under Our Skin and read Cure Unknown, you’ll be a pro at all this and what’s happening in the “Lymelands.”

I’m sorry, I seem to have rambled again, Lorena! Aoshi, you’re too kind…I’m a waffler by nature, so while my responses may seem thorough, they’re probably also including things that weren’t even on topic! 😆

[lorena9]

Thanks Maz – I love reading your posts! I learn a lot and continuously remain impressed at your knowledge and commitment to your health and helping others with theirs…. and i speak to all the other volunteers at road back as well.
I will keep the pulse dosage until I see an LLMD. Yes, please send me the list of LLMD in MA and even CT. I have read Scammel’s book but will reread the portion on Lyme now that I have been diagnosed.

[lynnie_sydney]

The clinic i found here which tested me recently recommends I go on Mino 200mg everyday. That i would need to get blood work done every months minimum to monitor toxicity in liver and kidneys.

Lorena – thought it was worth pointing out that the American College of Rheumatology’s 2008 Guidelines state that no lab monitoring is required with minocycline after baselines are taken – unlike the other heavy-hitting drugs. Mino is comparatively a very benign medication, one of the reasons my GP was originally very happy to rx it for me. Which is why I always find it so curious that rheumies are usually so resistant to rx’ing it.

I am attaching the relevant page in the Guidelines here as a pdf

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Maz]

@lorena9 wrote:

Yes, please send me the list of LLMD in MA and even CT.

Hi Lorena,

I will send you a PM (private message) with the LLMD lists for MA, RI and CT. To retrieve your PM, just click up top where it will say (1 new message), right beside your User Control Panel. These docs tend to be backed up for some months, especially the very experienced ones, so you will no doubt want to research these in advance of a trip back to your home in MA to ensure you can get in to one of them. 😉 Would also suggest connecting with the various state Lyme advocacy groups who should have some good insider knowledge on who may suit your needs best. You’ll find state/local area contacts here:

http://www.lymenet.org/SupportGroups/UnitedStates/

The Tickborne Diseases Alliance may also have some further listings of which we are yet unaware, so worth connecting with them and asking for their referral lists, too:

http://tbdalliance.org/diagnosing-tbds/find-a-medical-professional

[PhilC]

Hi Lorena,
@lorena9 wrote:

Also i have begun having visual disturbances again, and wonder if the low dose of mino is doing this

Yes, it is possible that the minocycline is responsible (even if only indirectly) for your blurry vision.

@lorena9 wrote:

For supplements I take fish oil, NT factor Gold ( for cell conversion efficiency) vitamin D -probiotic and progreens.

Taking Progreens may be doing you more harm than good. See: Alfalfa is a health hazard

@lorena9 wrote:

I am taking Mino now (for RA) until i see an LLMD who hopefully can look at the whole picture ( including RA) My question is: i was on 100 mg a week ( 2X50mg a week) for two months now, and I am just beginning augmenting it to 100 mg MWF. Should I do this gradually as in maybe 50 mg MWF? As i said i am noticing blurry vision- which I think is from the mino.

Yes, gradually is the correct approach; the fact that you have Lyme Disease does not change that. Having said that, I am concerned that the minocycline may be responsible for your vision problems. If it is and you continue to take it, you may end up with permanent vision loss. It would be prudent to discontinue taking the mino (at least temporarily) to see if the problem goes away. If the mino is responsible then switching to a different antibiotic would be advisable. I recommend discussing this matter with your doctor ASAP.

Phil

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

[Author]

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