24 replies to this topic

[Luddist]

7/26/13: Current regimen schedule (click to enlarge):



This is my first post on Longecity. I found my way here doing research on these various supplements and was consistently impressed by this forum. For now I need to deal with this but my long-term goals include a long healthy and fulfilling life. I read through FunkOdyssey's Lyme thread and saw there are a few people here that have or had Lyme and have hopefully blazed a trail for me. This is a long post but I welcome and appreciate any comments based on the experience and knowledge you all have.

My regimen here is primarily based on recommendations from a Lyme specialist doctor and reading Healing Lyme by Stephen Buhner. He advocates using herbs and supplements as a compliment to targeted antibiotic treatment. I am seeing a Lyme specialist MD, a holistically-leaning primary MD, and occasionally seeing a TCM acupuncturist with a decent knowledge of herbs. My primary doc recommended I read Fatigued to Fantastic by Jacob Teitelbaum, MD, which led to me re-suspecting I have Lyme.

Symptoms are almost totally neuro, very little arthritic if at all. The worst symptoms are derealization/depersonalization and the emotional issues that come with it followed by fatigue, memory troubles, brain fogginess (cleared up a bit after starting supplements) anxiety, strange physical sensations under skin/in muscles, and insomnia. I believe it induced a gluten intolerance at some point so there are compounded symptoms from that too.

Short story
Very likely bitten by a tick in April 2009, saw a rash on my leg but didn't know that a tick bite/Lyme disease could be the cause and figured it was a spider bite. Took a picture anyway. Symptoms appeared not long after. Got ELISA test done in 2010 which came back negative as it usually does after being infected for more than a few months (from what I've since read). I spent the next two years trying different things but pretty much gave up. When I didn't want to be awake or asleep or dead I went to a new doc this year and he recommended I read Fatigued to Fantastic. It mentions that CFS/FM symptoms can be caused by Lyme and that the testing for it is garbage. With the rash and symptom picture I was sure I had Lyme and possibly coinfections. My primary doc referred me to an autoimmune and Lyme specialist, who ordered Igenex IFA/western blot/PCR blood tests plus gluten intolerance and a food antibody panel. IFA and PCR were negative and the WB came back on the fence, with IgG 31 band showing + and a couple other borellia-specific bands showing indeterminate. Gluten intolerance came back high and the food panel showed high antibodies to a few foods including grains with gluten. There is a followup epitope test with the 31 band because it can cross-react with viruses. The epitope test, which is claimed to be 98% specific, came back positive for Lyme. The Lyme doc also suspects that I have a bartonella infection as well, which I suspect too.

Me
29 year old european male living in Minneapolis, MN, USA. 5'8" 140lbs on average.

Diet
I have cut gluten and processed sugars out of my diet. I still get sugar from fruit and I don't know how bad that is for me. I try to space drinking fluids away from eating meals. I have tried to add some probiotic foods: unpasteurized sauerkraut, kefir, plain yogurt. Beyond these changes diet is something I only have a half-baked idea about specifically. Would appreciate some comment.

Exercise
I don't exercise much. I bike on occasion, used to do indoor climbing quite a bit but have stopped. Anaerobic is few and far between. I would appreciate some advice on a simple routine that could help. I'm not the type to want to spend an hour at the gym every day but would probably be ok doing free weights at home.

Supplements: oh boy I learned to use Excel for this






Supplement stuff
The powder multivitamin designed by Tietelbaum seems to cover a lot of bases. I can't post links yet so Google search "Energy Revitalization System" for the nutritional breakdown. But I kinda don't like downing a whole pint of water with breakfast. If there's an alternative I want to hear about it, but adding more individual supplements, unless they might be specifically effective for my case, is not something I'm wanting to do right now.

I am very new to probiotics and felt frozen trying to make out what to get, but my doctor told me to take 100 billion CFU before bed every night and this one claims shelf stability and is price effective. What probiotic should I be taking and how?

The CoQ10 is cheap Costco brand. My Lyme doc told me that CoQ10 is one of the more fickle supplements and I should find a brand backed up with studies showing absorbtion/effectiveness. Thoughts? Also, with CoQ10 vs. ubiquinol I have settled on the CoQ10 side based on age.

The high doses of B vitamins is based on Teitelbaum's recommendations for anxiety and depression. My Lyme doc wonders if I'm an undermethylator and has prescribed methylcobalamin injections, and I added the methylated folate a few days ago because it is dirt cheap from Swanson.

I'm starting to wonder if I should adjust/remove acetyl-L-carnitine. Recently thyroid tests showed high TSH, low T3 and a hair above normal T4. Doctor wants to try synthetic T3 but I'd rather adjust supplementation if that's the cause. Reading FunkOdyssey's thread there's a mention of a connection between thyroid and L-carnitine so I'll have to research further.

The vitamin C I have only been sporadically taking because my doctor mentioned C uses up stomach acid, which I'd rather see go towards digesting the herbs I take between meals.

There are a few threads on this forum dealing with the potential negatives of huperzine A and vinpocetine. I have just started the huperzine A this week and have been taking the 5mg vinpocetine twice a day since starting the ginkgo supplement. I don't discount the possibility of vinpocetine contributing to or prolonging depression and plan on seeing if it gets worse with added supplementation. If so I'll discontinue that ginkgo supplement.

I've taken it for a month and I've read a lot but don't have much experience with ashwagandha really. I just saw that Now Foods had the most potent extract for the money and bought that one. Any comments on that?

Lyme herb stuff
All of this is pretty much coming from Buhner, who out of a sea of charlatans in the Lyme game seems relatively trustworthy when all he's selling is a book. His core protocol is Japanese knotweed, cat's claw, eleuthero, and maaaaaybe andrographis if it's tolerated. I added stephania tetranda based on his recommendation of it for neuro symptoms. Teasel is apparently helpful for midwest infections as well. I try to take the herbs in powder form on an empty stomach mixed with unsweetened applesauce, orange juice, and/or V8. The eleuthero and teasel tinctures get put into water or sometimes juice.

Based on suspecting a bartonella coinfection, I've ordered Buhner's book specifically for mycoplasma and bartonella coinfections that just came out. I don't know what this new book recommends but his previous recommendations for bartonella were sida acuta, hawthorn, Japanese knotweed, houttuynia, EGCG, 5g of L-arginine daily, and a high dose of milk thistle extract.

Antibiotics
I have not begun antibiotics yet. The epitope test came back positive not too long ago and my Lyme doctor recommended waiting for a bit while I build up to a full dose of the herbs. I suspect I'll be put on doxycycline, Rocephin/ceftriaxone, and possibly a third. I am eager to kill it off but at the same time want to do it the right way and not leave a relapse of infection to chance. I also want to give my gut a little time to heal before killing off all of its flora. Furthermore I don't know yet how it will be navigating insurance payments. I am also pretty scared of having a PICC line put in me for the IV ceftriaxone.

Progress
So far it's only been a little. Besides brain fog, the symptoms persist. I'm happy to finally be able to do something about it though. I hope over the long term killing the bacteria off and treating the demyelination will alleviate the severe symptom of derealization.

Suggestions, questions, or comments are all welcome. Trying to figure this all out mostly on my own has been an undertaking and I'd love to hear from people who have been down this road or have useful experience and knowledge.

Edited by Luddist, 26 July 2013 - 08:39 PM.

[nameless]

I was diagnosed with Lyme (and coinfections) years ago, and sort of surprised you may go the PICC route, especially at this stage. Besides insurance issues, there is also no guarantee it'll do any better than orals will. For some people, it makes things worse.

My doc (ILADS, although conservative ILADS) usually goes with orals, and probably wouldn't wait to treat if he suspected an infection. I am not so sure there is a benefit to waiting. And yeah, Doxy is a good choice, as it also kills some of Lyme's friends. Ask for Doryx, if you do take Doxy ... enteric coated and much easier on the belly. And take with food, regardless of what the medication pamphlet says.

Did you get all co-infections tested? Any regular lab (that insurance pays for) can do for those. I'd put more stock in co-infection testing than band 31 alone, as it seems a ton of people get that one coming back positive.
And for Bartonella, if you get it treated, it may make it easier to have a positive test. The treatment for Bartonella is usually something like Levaquin, which has its own risks. I took Levaquin, but we waited until the end of my course of antiobiotics, and used it sort of as a last resort. I wouldn't have agreed to take it unless I had positive labwork to back up my diagnosis (too much of a scaredy cat). Thankfully I had no tendon tears.

As for supplements ... not crazy with the idea of going overboard. A couple of tips:

Ask for VSL#3 DS, which is a prescription probiotic. Hopefully your insurance covers it. If so, ask your doctor for the max dosage (which is something like 4 sachets daily). Then when you take it (away from antibiotics), use only a very partial dose, maybe 1/3-1/2 packet at most. That way the probiotic lasts you a long time, for a single co-pay. For one co-pay I had like a years worth of probiotics. It's much, much cheaper, and better quality, than OTC stuff. A single sachet of DS has 900 billion bacteria, by the way. 1/9th daily would last your forever.

Get CoQ10 sourced by Kaneka, which is what the majority of supplements, or at least good ones, probably use. Healthy Origins at iHerb is pretty cheap. And the Ubiquinol at Costco is also a decent price. But I am not so sure it'd make any difference for you health-wise.

Was your homocysteine high? Just curious why all the B-12, folate, etc.

What was your TSH level? And did you get thyroid antibodies tested?

I am conservative regarding supplements, but if you do decide on a regimen, just make sure to keep things stable whenever you start antibiotics. One point to trying antibiotics is determining which may be helping... or not doing anything at all. If you are swapping around a ton of supplements at the same time you start treatment, you won't know what may be helping.

Oh, as far as exercise, I don't do the weight thing, so can't recommend anything there. But for general exercise for those who dislike gyms, I recommend an exercise bike + game system. I get most of my exercise simply playing xbox 360 games.

Edited by nameless, 07 June 2013 - 01:32 AM.

[Luddist]

Hey nameless. Regarding the IV antibiotics, it's what my doctor was talking about doing. She has done it with many of her patients. I'm not an expert but generally what I've read is that the IV ceftriaxone is good at crossing the blood brain barrier, which is key because most of my symptoms are neurological. It seems to be commonly used for long-term neuro Lyme, which I think I've had for over four years now. I've read some oral antibiotics are better than others at crossing the BBB and that intramuscular antibiotics are another alternative to IVs. Though reading FunkOdyssey's thread it sounds like the muscular ones are literally a big pain in the ass. And the IV care will probably cost a small fortune. And even doxycycline's price has become astronomical due to a shortage. It's something I need to look into in depth soon. Thanks for the recommendation on the enteric coated doxy, info like that is exactly the kind of priceless experience I hope to learn from.

Got LabCorp's Bartonella Antibody Profile (86611) test done along with Babesia Microti Antibodies (86753), Ehrlichia Antibodies (86666), and their comprehensive metabolic panel (80053). All tests there were negative, however I've read that the bartonella tests are just as inaccurate as borellia tests. Then there's the the possibility that it's one of many bartonella species that isn't one of the two species (B. henselae and B. quintana) LabCorp tests for. Then on top of that, bartonella, like Lyme, supposedly is really effective at lowering immune response to it to almost zero in a long-term infection so antibodies are hard to detect. Again I've likely been infected for 4 years.

Re: overboarding on supplements, I agree it's not something I want to do long term. I might drop about half or more of the stuff when current supply runs out. Once I was sure I had a Lyme infection I was extremely motivated to throw everything at the symptoms as possible. I had stopped doing almost everything and was barely eating, so I felt a great need to intervene otherwise I might not make it through. I spent at least an hour per supplement doing some Google research, and some I would read about all day before throwing it on the list.

I read about the VSL3 DS in Funk's thread but forgot to mention it here. Couldn't hurt to ask my doctor to prescribe it, although I'm not sure if the average pharmacy carries it or if my insurance would cover it. Who knows, maybe even the OTC stuff is cost effective.

I don't have any blood work in front of me that mentions homocysteine I'm pretty sure. My Lyme doc mentioned testing for methylation pathway issues but I didn't care about that I just wanted to get tested for Lyme. I'm glad she convinced me to do gluten and food antibody tests too though. Methyl B-12 shots are prescribed for neuro symptoms primarily, B-12 isn't well absorbed in damaged guts from what I read. I wasn't supplementing it before this week but the folate I added because the multivitamin powder has 400mcg folic acid. 400 is the minimum Teitelbaum recommends (400-1,200mcg daily) to help with depression as it with B-12 contributes to production of seratonin and SAMe. Quoted directly from his book: "In fact, studies of high-dose folic acid have shown this nutrient to be as effective as an antidepressant." (p.221) With that and the price of a 6-month supply being $13.47, I figured I'd give it a shot. As for the form, I've just read that folic acid is not the optimum one and 5-MTHF is the natural form of it.

The latest labs I got done were:

DHEA-S: 550.8 ug/dL (norm 160-449 ug/dL) --this is high but doc says it's ok
testosterone total: 882.4 ng/dL (norm 348-1197 ng/dL)
free testosterone: 25.6 pg/mL (norm 9.3-26.5 pg/mL) --almost max normal
TSH: 4.55 uIU/mL (norm 0.45-4.5 uIU/mL) --slightly over max normal
free T3: 2.7 pg/mL (norm 2.0-4.4 pg/mL) <-- doc said this was low, wants me to consider trying synth T3 hormone
free T4: 1.61 ng/dL (norm 0.82-1.77 ng/dL)
vitamin D, 25-hydroxy: 42.6 ng/mL (norm 30-100 ng/mL) --doc wants to get it to >50, recommends adding 1000 IUs to the 6000 I'm getting from multivitamin+liquid D+EpiCor and of course sun exposure

I've read about correlations between Lyme, gluten intolerance, and Hashimoto's thyroiditis. I think I'll ask for a thyroid antibodies test before I take any of the T3. Also he said he ordered liver tests but apparently didn't. Guess I'll ask for that again too.

Thanks for the advice on supplements, I definitely want to get the herbs to the stable high doses for a week or two before starting antibiotics. I'll be starting the last one, andrographis, this week. Current plan for discontinuation of supplements (not planning on adding anything unless there's a very good reason to) is to just cease taking them when they're gone. Think I should plan on the timing a little more for discontinuing? I also have it in my head to use a little more willpower in the diet area and replace supplemental minerals and such with food. I hear kale is amazing nutritionally, but it's just not something I'd regularly pick up from the grocery store yet.

Speaking of good reasons for adding things or maybe changing behaviors, I badly want to get my sense of self and reality back. Like I said before this is the worst symptom and I don't know if I could have even imagined a situation like this when I was healthy. I was hoping ashwagandha would help with this but it doesn't really. The only thing that has managed to very temporarily help me regain some sense of myself and wellbeing has been cannabis. I'm not a regular user by any means (once in the last year) and with all of its issues, that's left on the backburner as a last resort. If anyone has a recommendation or two for this symptom I'd love to hear em.

Nameless, what has been your outcome from treatment? And in brief what were your symptoms, coinfections, and treatments? If you've already posted it somewhere you can link me to the post. Thanks again!

Edited by Luddist, 07 June 2013 - 08:41 AM.

[j03]

Just to put this out there:

The formally biggest proponent of Lyme disease being a chronic illness on Longecity, FunkOdyssey, now believes lime doesn't exist as chronic illness.

http://www.mindandmu...sm-lyme-cfs-aps

Edited by j03, 07 June 2013 - 04:55 PM.

[dz93]

Try researching colloidal silver nano particles. There's a lot of stuff about silver helping Lyme disease. I have an aunt with Lyme disease who has had great success with silver. She's much better than before. Antibiotics always made her feel worse due to the obvious reason that antibiotics kill all bacteria in the body whether its good or bad bacteria. Silver is known to only harm bad bacteria leaving good bacteria behind to do its job in maintaining health. Do your research on the subject though before you make any decision

[Luddist]

Just to put this out there:

The formally biggest proponent of Lyme disease being a chronic illness on Longecity, FunkOdyssey, now believes lime doesn't exist as chronic illness.

http://www.mindandmu...sm-lyme-cfs-aps

Thanks, I was wondering what had happened to him. He seemed to go through all sorts of different stuff without much result. I'll have to give that thread a read. I've had my doubts about what's going on with me, but nothing besides a tick bite and its nasty infections explain the symptoms I have combined with this picture I took in April 2009:

I thought it was a spider bite, and took a picture just in case it was a brown recluse and my leg's flesh started falling off. Seeing a competent doctor then would have saved me a lot of trouble. I likely picked up a tick while mountain biking.

Try researching colloidal silver nano particles. There's a lot of stuff about silver helping Lyme disease. I have an aunt with Lyme disease who has had great success with silver. She's much better than before. Antibiotics always made her feel worse due to the obvious reason that antibiotics kill all bacteria in the body whether its good or bad bacteria. Silver is known to only harm bad bacteria leaving good bacteria behind to do its job in maintaining health. Do your research on the subject though before you make any decision

I have not looked into colloidal silver much, it doesn't make intuitive sense to me. Wouldn't you have to essentially saturate your body with silver particles (to the point of your skin turning blue) to have an even a small antibiotic effect? If the silver kills bacteria in vitro, that's great but in vivo wouldn't the silver bits have to make direct physical contact with the bacteria to get the job done? And how does it avoid killing gut flora if it's antibacterial and orally ingested? Basically it doesn't make enough sense to me and I have lumped it in my mind with other quacky sounding treatments for Lyme that the shysters in the business typically promote. I appreciate you mentioning it nonetheless.

Edited by Luddist, 07 June 2013 - 10:07 PM.

[nameless]

Just to put this out there:

The formally biggest proponent of Lyme disease being a chronic illness on Longecity, FunkOdyssey, now believes lime doesn't exist as chronic illness.

http://www.mindandmu...sm-lyme-cfs-aps

Also curious what happened to him.

Whether a chronic illness or not, it still doesn't mean untreated Lyme + coinfections aren't causing a problem. It's not like most people complaining about Lyme caught it early, treated properly, then say they have a chronic illness. It's more like we got bit early, didn't do any treatment at all for many years ... then have problems.

My doc believes residual affects can remain, due to damage done. But it doesn't mean long term (like forever) treatment is useful, as damage done doesn't necessarily equate to an active illness.

Edited by nameless, 07 June 2013 - 10:29 PM.

[nameless]

Nameless, what has been your outcome from treatment? And in brief what were your symptoms, coinfections, and treatments? If you've already posted it somewhere you can link me to the post. Thanks again!

I would suggest trying the orals route before IV... who knows, maybe it's all that is needed? And your reaction to orals may be a good indicator as to whether Lyme even exists at all.

And all pharmacies can get VSL#3, but only the DS type. Some insurances cover it, some don't.

As for folic acid, just be aware of the possible cancer link. You may not want to go overboard on it longterm.

Your TSH is a bit high there. Mine was around 3-3.5 when I was diagnosed with Hashimoto's. One of my antibodies was high, and an ultrasound showed my thyroid was getting a bit fat and lumpy. Thyroid antibodies can be tricky to find in tests sometimes too ... it's almost random. I've had tests where antibodies are normal, some with one antibody high (TPO)... sometimes the other one (TGAB).

As for my diagnosis and treatment. About 12-15 years ago I noticed I didn't feel that great. I went to a med clinic (didn't have a regular family doctor) and they did a western blot, and doc said that he thought I may have Lyme. Did a followup (and now a different doctor)... and he said no. Then years later I noticed odd symptoms, including cardiomyopathy.

As for testing... I had a positive Igenex for Lyme, IGM... I think. But negative for CDC. I used regular local labs for co-infection tests, mostly LabCorp and Sunrise. I was positive IGG for ehrlichiosis (one strain), bartonella (both strains, but quintana was low positive), babesia WA-1, spotted fever and typhus. Bartonella Henselae came back as a recent infection after I started on Doxy for a couple of months, so figure it got my antibodies angry or something.

My symptoms are/were basically fatigue, muscle aches/twitches, some joint pain, some numbness in fingers/toes primarily, shortness of breath, and the feeling of having the start of the flu, or a virus. And also was diagnosed with cardiomyopathy, which may or may not have been related to Lyme (docs can't say).

I went on orals on and off for a couple of years. Most symptoms improved somewhat, the main one being the virus thing. At least I don't feel like I am walking around sick all the time. I still feel tired and my breathing isn't the greatest, but that could be asthma related. And I still have some muscle spasm thing going on sometimes ... but not sure if that is even tick related or not.

As for treatments, I started on Doxy, tried ... umm... one other antibiotic, which I forget the name to... we then paired that up with Doxy for a while. Then did the Babesia treatment thing (mepron + zith)... which sort of killed my liver. Then did Levaquin for 90 days. Oh, and also tried Bactrim for one week, which was a total disaster. Worst I ever felt in my life ... fever, headache and finally a rash all over my body, and I fainted once.

So some of it helped, but I can't say for certain what tick disease was improved, or even what treatment was best. Out of everything, I think I reacted best to Doxy though.

[Luddist]

That's a really good point on starting orals before IV, and I hope that's what my doctor has in mind. If not I'll throw it out there.

Got an appointment with my general MD for Monday to talk about the thyroid thing. The tests I'm going to ask for are thyroid antibodies, liver, and maybe iron level (a nurse who had Lyme I just talked to recommended checking this for a sign of babesia, low iron=possible babesia according to her). Think I should ask to get homocysteine tested, and is there any other relevant bloodwork?

The nurse I mentioned above also said it's a good idea to pulse a bit with Rocephin. Taking the weekends off apparently gives the liver time to catch up and reduces the risk of gallbladder damage. She said to take milk thistle extract about 30 minutes before dosing antibiotics, to shield the liver. She also recommended I look into NT Factor Energy, which helped her out with fatigue.

Sorry to hear that everything's not back to normal nameless, hope you're still working on that if it bothers you.

Edited by Luddist, 08 June 2013 - 03:52 AM.

[nameless]

My doc usually starts patients on an oral (usually Doxy) for three months, then based on reaction, alters as needed. If no response to Doxy, he tries a different oral. If still no response... good or bad... the Lyme diagnosis may be questionable. So you can bring that up with your doctor and see what he thinks. I'd rather go that route than stick a PICC line in from the start, without knowing for certain Lyme is even causing the problem.

As for tests, ask for both thyroid antibodies, TPO and TGAB. You can even ask for a thyroid ultrasound, which is probably the best indicator. If you have a fat, lumpy thyroid, or nodules, you know something is going on there that isn't quite right. And your T3 looks okay to me. My endo only hinted at possibly treating T3 when mine came back once at the bottom of range (and he's one of the rare endos who is okay with Armour/natural treatment). But he also stated T3 can vary quite a bit, and next test my T3 was more in the middle again. So not so sure I'd rush into getting T3 based on one test, and a test where your T3 looks pretty normal. I'd want at least an ultrasound before treating, to see if any condition even exists.

And ferritin is fine to ask for, as is homocysteine. You can have them throw in liver, a CBC, Vap and hs-C reactive protein while they are at it.

The only other Lyme-y test that could be worth testing is babesia wa-1, if you haven't gotten that and suspect babesia. Not all labs do it, but Labcorp does (or at least used to). If you don't have babesia symptoms (night sweats/trouble breathing), I wouldn't worry about it. And if you suspect Bartonella, I assume you have the sore heels of your feet/shin thing going on? One interesting thing is co-infections may become more symptomatic as treatment goes along-- my heels started hurting after about 3 months of Doxy -- and that is when I also tested positive for Bart for the first time.

Some med tips:
If you take Doxy, stay out of the Sun. And I mean really, really stay out of it.
If your doc recommends Bactrim, stop if you notice a fever or rashes, or feel unusually horrible. A lot of people react poorly to Bactrim.
If you go on a quinolone, load up on magnesium beforehand and continue (although not at the same time) as you take the antibiotic. Stop immediately at the first sign of any tendon pain.

Also be aware that most antibiotics shouldn't be taken near minerals, so space those out accordingly.

[Luddist]

Since last posting, I went to my general physician, talked about the thyroid thing and he prescribed 5mcg synth T3 (cytomel) once daily. Labs ordered were liver enzymes, thyroid antibodies (he had never heard of testing TGAB, and just went with whatever is on the short list from LabCorp), ferritin, and homocysteine. I don't seem to have heart symptoms so I didn't ask for the cholesterol or c-reactive protein you suggested nameless. The blood was drawn almost two weeks ago and I'm still waiting on the results.

I went to a couple support groups, read Stephen Buhner's book about mycoplasma and bartonella infections (glossing over the mycoplasma section), and subtracted a few supplements that I'm not 100% sure about. I'm not feeling great and just want to stay in bed after waking up so I'm definitely removing the ginkgo+vinpocetine in case it's causing further depression.

Regimen changes:
+synth T3 5mcg daily
+sarsaparilla root - currently ~1g 3x daily

-ginkgo biloba + vinpocetine
-huperzine A
-glucosamine sulfate
-acetyl-L-carnitine (regularly)
-methylcobalamin B12 injections (I hate injecting myself)

Based on Buhner's coinfection book I've been brainstorming/pricing a two-month addon regimen to address coinfections. The idea is to be taking these alongside Lyme antibiotics. Primarily bartonella is the target but the antibiotic herbs used for that have a heavy overlap with his recommendations for mycoplasma and babesia. So with the addition of NAC and downing a shot of olive oil every day I should have those covered.

Bartonella protocol
Swanson AjiPure L-Arginine - 500mg - up to 9 caps (4500mg) a day
Cordyceps tincture from Sage Woman Herbs - 1/4 tsp 3 times a day
Sida acuta tincture from Woodland Essence - 30-60 drops 3-4 times a day
Red root tincture from Sage Woman Herbs - 1/4-1/2 tsp 3 times a day
Now Foods EGCg Green Tea Extract - 400mg - 2 caps a day with breakfast and lunch
Swanson Quercetin - 650mg - 2 caps a day with EGCG
Now Foods Silymarin Milk Thistle Extract 2X - 300mg - 4 caps a day with breakfast and dinner
Swanson Hawthorn Standardized Extract - 250mg/250mg - 1 capsule 3 times a day
N-acetylcysteine - 2g morning and night

Possibly adding to that a blend of adaptogenic herb tinctures, rhodiola and schisandra in addition to the eleuthero I'm already taking.

Neuro symptoms
I've also been considering a few options with regards to neuro symptoms. Again the most bothersome is the lack of a sense of myself and wellbeing. Buhner recommends Chinese (baikal) skullcap with nervous system involvement, and mentions Chinese senega and lion's mane as the most potent natural NGF stimulators. Other things on my radar are magnesium threonate (NMDA antagonist to counteract quinolinic acid's NMDA agonist action), sulbutiamine or allithiamine, and current nootropic darling uridine+DHA+choline. Taking so much shit though I know I should put these off (except the Chinese skullcap and maybe magnesium threonate) until I'm well into or past pharmaceutical antibiotic treatment.

As far as bartonella specific symptoms, I've had foot pain diagnosed as plantar's fascitis in the past, but don't get it anymore.

Beyond shoving more shit into my mouth I'm beginning again to see how exercise and meditation can be valuable, we'll see how much I put this to practice. On the plus side I was listening to some music today and started feeling in touch with it.

Edited by Luddist, 22 June 2013 - 04:28 PM.

[nameless]

You do seem to be taking an awful lot of supplements there ... definitely a lot more than I took. Since any improvement won't be immediate (at least usually), I am not sure how you will tell if an antibiotic is helping, or a supplement is.

My doc was fine with supplements, within reason, but not at the same time as starting treatment. I went the sort of simple route ... if a med wasn't helping, I really doubt supplements would matter.

Just make sure to get your liver tested, a lot, whenever you do start treatment, especially with so many extras you are taking. If my doc didn't test me when I was doing Babesia meds, I probably would have went into liver failure.

[Luddist]

Yup I agree that I should reduce what I'm supplementing.

Here's what it will be streamlined down to:

multivitamin powder
probiotic - my doc gave me some VSL3 capsule samples, seemed slightly wary of prescribing DS but I can always push
magnesium in the forms of glycinate and malate
vitamin D
fish oil
CoQ10
melatonin
B-vitamins
zinc with copper [1][2]
selenium - helps thyroid function and is a precursor to glutathione
vitamin C - antioxidant, immune system, necessary for collagen and neurotransmitters
alpha lipoic acid - recommended by Buhner as an intracellular antioxidant, chelator, and glutathione stimulator
curcumin with bioperine - anti-inflammatory
green tea extract/EGCG with quercetin
milk thistle extract - liver
ashwagandha - reduces cortisol, anxiety, immune modulator,
Relora as recommended by my doctor for anxiety

plus Lyme herbs Japanese knotweed, cat's claw, eleutherococcus, stephania tetranda, andrographis, sarsaparilla, and teasel.

The reasoning for all this is scattered between my notes and my head but nothing's typed up and I am not feeling the energy to do it. I think all of this is reasonable based on what I've read Lyme specifically does to the brain. I plan on consulting with my Lyme doctor about adding the above herbs/supplements for treating coinfections. My thought is it may be beneficial to complement pharmaceutical antibiotics with herbals at the same time but she has the clinical experience so I'll see what she has to say. One thing I know I'll have to look out for is the alcohol ingestion with tinctures and the possible interactions and liver competition with antibiotics.

By "a lot" do you mean weekly liver tests, bimonthly, or..?

Edited by Luddist, 23 June 2013 - 04:06 AM.

[nameless]

I am not sure why your doctor would mind prescribing VSL DS, if she's willing to give you free samples. Unless she doesn't know the dosing... which I have found sometimes with doctors when they don't regularly prescribe a particular medicine. Tell her it will save you several hundred dollars a year. Although it may be better to first check with your insurance and see if they will pay for it.

Are you taking 700mg fish oil daily, or 2.8g daily? Just be aware that large doses could theoretically suppress one's immune system.

As for liver testing, I think I was tested every 2-3 months most of the time. But if starting a new med, I was tested 4 weeks after starting, just to make sure my liver wasn't about to explode. I only had to do weekly for one med, but that was just because my liver really didn't care much for it.

[Luddist]

5g of Carlson Elite Gems (total 1.6g EPA, 1.2g DHA) daily usually, as recommended by my Lyme doctor based on the fecal fat absorption test part of the Enterolab gluten sensitivity panel. Theory is I'm not absorbing much of the oil so a high dose is in order until my gut heals.

In the last few days I've been feeling like crap, sleeping too much and not eating much, my dosing schedule has fallen apart. I'm finding it hard to have any motivation, even to get better.

[Luddist]

Doctor's office forgot to mail me the results from the blood tests I had a few weeks ago. Just got them.

homocysteine, plasma: 10.6 umol/L (norm 0.0-15)

hepatic function panel
-total serum protein: 6.8 g/dL (norm 6.0-8.5)
-serum albumin: 4.9 g/dL (norm 3.5-5.5)
-bilirubin, total: 0.5 mg/dL (norm 0.0-1.2)
-bilirubin, direct: 0.11 mg/dL (norm 0.0-0.40)
-alkaline phosphatase: 54 IU/L (norm 25-150)
-AST: 25 IU/L (norm 0-40)
-ALT: 15 IU/L (norm 0-44)

iron binding capacity
-TIBC: 290 ug/dL (norm 250-450)
-UIBC: 203 ug/dL (norm 150-375)
-iron, serum: 87 ug/dL (norm 40-155)
-iron saturation: 30% (norm 15-55%)

-serum ferritin: 199 ng/mL (norm 30-400)

thyroid antibodies
-TPO Ab: 14 IU/mL (norm 0-34)
-antithyroglubulin Ab: <20 IU/mL (norm 0-40)

Because everything's within the lab's normal range the doctor said everything looks fine, but according to LEF the homocysteine level is a little high. I wonder where this was sitting at before I was supplementing with methyl B12 (for a couple months before) and methyl folate (for a week).

This is where I'm at with supplementation and herbs:


I've started a trial of Magtein (magnesium L-threonate) for a month, discontinuing the glycinate and malate forms of magnesium I was taking on the assumption they'd compete for absorption.
I'm leaning towards being more cautious with alpha lipoic acid so that's on pause for now.
The herbs are pretty much at the full dose.
I've switched to Now Foods' liquid melatonin to be able to get a lower dose than ~1.5mg from biting a tablet in half and also to get the benefit of sublingual absorption.
Once I run out of Nature Made CoQ10 I'll be looking into getting some Kaneka CoQ10 or ubiquinol.

[nameless]

I wouldn't really worry about the homocysteine. It probably will go down a bit with supplementation anyway. It's also iffy if supplements really matter, as if I recall right, studies that used supplements to lower homocysteine didn't lower heart disease anyway.

I was never quite sold on magnesium L-threonate, as even if it provides more mag to the brain, who knows if it's safe longterm? I mean, there may be a reason why the blood brain barrier doesn't allow other magnesiums in.

Edited by nameless, 30 June 2013 - 12:48 AM.

[Luddist]

I'm taking doxycycline (empty stomach, pint of water) and cefuroxime (with food) now, and will be taking twice the cefuroxime in a few days. I'm phasing in some bartonella fighting stuff. Things in grey will be added in the next week or two. Edit: Actually the prescription notes on cefuroxime are confusing and I'm not supposed to take it until after doxycycline.




I won't be continuing Magtein, after a month I might have noticed slight temporary anxiety reduction from it but nothing big. Plus I agree with nameless' reasoning above. Fitting in minerals 2+ hours away from the doxycycline is a bit harder but I'll continue to take magnesium glycinate and malate when the time is right. I bought some Ester-C but I'm being cautious about when I take it because of the mineral thing again, it has 55mg of calcium per tablet.

I halved the fish oil.

I didn't notice much of anything from taking the Cytomel (T3). It was a low dose at 5 mcg but I tried 25 mcg one day and it did nothing. I haven't followed up with my physician about thyroid hormones.

VSL#3 DS isn't covered by my insurance. :( On high recommendation from someone at a support group, I got some Jarrow saccharomyces boulardii.

Picked up some ubiquinol from Costco because it's as cheap as good CoQ10 right now. I'll still continue to take the cheapass Costco brand CoQ10 with other meals unless there's a good reason not to.

I ordered some cordyceps tincture as recommended by Buhner, because of all the fungal traditional medicines, it looks on paper to be the best. However I have a concern about what medium is used to grow it, as it's probably not a good idea to eat if it's grown in a cereal that has gluten proteins. I'm still waiting to hear back from the seller about this.

The Chinese/baical skullcap is supposedly good for CNS issues, but so far hasn't done enough for me. I'm strongly considering trying the uridine and alpha GPC combo. I also have a bottle of L-lysine on hand, I've read that it can help anxiety along with L-arginine.

My Lyme doctor said the next antibiotics could be Flagyl and Zithromax, depending on how I'm doing in a few weeks to a month.

Edited by Luddist, 26 July 2013 - 08:38 PM.

[nameless]

I'm taking doxycycline (empty stomach, pint of water)...

My Lyme doctor said the next antibiotics could be Flagyl and Zithromax, depending on how I'm doing in a few weeks to a month.

You must have an iron stomach. The one time I tried Doxy on an empty stomach, it didn't stay down very long. Going with Doryx or plain capsule Doxy?

Ceftin (cefuroxime) or Omnicef (I forget which one I took) was the other antibiotic I took for a while. Pairing it with Doxy gave me the best results of anything I tried.

Is your doctor planning on switching up antibiotics in a few weeks to a month, or adding more to what you are already taking? All of those at once would seem a bit much, yet not sure why he'd stop Doxy + Ceftin so soon either.

[Luddist]

Plain doxycycline tablets. I asked about Doryx but my doctor was certain it wouldn't be covered by insurance. I've read other people saying they're taking cefuroxime at the same time as doxycycline but she wants me to take it after the doxycycline.

I don't know for sure what she plans on doing but I'll be seeing her this Monday. She mentioned those as in addition to cefuroxime. Still don't know when/if I'll be doing IV antibiotics but given my symptoms it might happen.

[pinkslippers]

Luddist,

I am so sorry you are going through this too. I am a 23 year old woman who was also bit in Minnesota, and am now in Washington, DC (seeing a doctor here). I have gotten a lot better but have ways to go. It looks like our protocols are very similar. Maybe we can discuss via skype sometime, what has been working/what hasn't? I am always talking to new people and gathering as much info as possible (as I'm sure you are...)

I look forward to hearing from you..

By the way, I saw that you were concerned with the alcohol in tinctures. I hear that If you put your mixtures in a small cup of water (like a shot glass) with hot water for 15 minutes, the alcohol will die off.

[Luddist]

Sure let's talk on Skype. I'll send you a PM. I see your introduction thread and what you're describing is similar to my situation. I'm not 100% sure about anything that's worked or hasn't but I'd love to share whatever I can. So far I'm best at finding good/best prices on supplements and herbs, and worst at getting better fast. :P Although I have a lot of thoughts and research into getting better slowly.

If you feel up to it, you can post a thread in brain health or mental health to see if anyone has suggestions on derealization. I've kinda been meaning to do that so we could both learn something there. This thread is tucked away in a forum that not everybody reads.

Edited by Luddist, 12 August 2013 - 09:45 PM.

[Strelok]

You might find some helpful info here: http://www.klinghard...m/Lyme-Disease/

[Luddist]

Appreciated but to me that guy qualifies for quack status. He uses too much unproven New Age techniques and I think he's sent people for dangerous treatments like hyperthermia. Not to mention his borderline cult that surrounds him.

[pinkslippers]

Hey Luddist,

I look forward to meeting. Yes I think I will post a thread. I'm sure some would have thoughts on this. The more people I speak to, the more I find that it's actually not as rare of a symptom I once thought it to be.

I have been getting better (very slowly) and I have my own theories on things. There's so much that goes into healing the body. Anyway, I can't wait to pick your brain. i'll be around this weekend. I'll look for you on Skype!