Friday, November 21, 2008

Odds and Ends

I don't use alternative therapies. Sometimes C.diff and other issues make standard therapy impractical. Patients can try protocols described by Buhner, Coweden and others. I have not found such therapies to be terribly effective in my patients. Salt and C: I don't use it. Anecdotal reports of its efficacy exist. This dove tails with one of the weirder aspects of the disease. Some patients with Lyme claims to see worms in their stool. It has been suggested that this is an unknown microfilaria species. Patients have in fact brought me stool specimens with visible worms. Labs have not IDed the organisms . The first thing the Willie Burdorfer saw in tick guts was worms. I don't know if this species has been characterized. High levels of Na in the gut may have an osmotic effect and act as a de-wormer as has been suggested by some. For such patient, Ivermectin has been tried. Sometimes it seems to help- I am reluctant to recommend this therapy at this time. Dr. Stricker who treat many Morgellons patients uses this anti-parasitic medication with some success. There is some connection between Morgellons and Lyme disease. This is outside my comfort zone.

My expertise(if I have any) has accrued over time. The combinations of drugs I used two years ago were more empiric then systematic. My approaches now are more regimented. I am not sure this has improved the results. For example, when I first read about LD treatments, I noted that Jemsek reported success with Cipro and Doxy. It didn't occur to me that I might also be treating "Bartonella." I used Rifampin because many patients reported that it had been effective; maybe this too was treating something other than Borrelia. The treatments were more hodgepodge. So when I review the cases of patients I have treated over time it may reflect an evolution in my general approach. It is still evolving.

IVIG sound great: I can't prescribe it because of standard of care limitations.

Invanz is a 24 hour drug with a broad spectrum of coverage. There are variable responses of drugs within the same class. I mentioned it based on one anecdote. It might be a great addition to the available arsenal. Most antibiotics require more complex dosing strategies. Unfortunately we have no data regarding the use of many antibiotics including this one.

Whether patients get very ill probably depends on a host of factors. Some strains of Bb may be more pathogenic. The mix of co-infections varies. Individual immunological responses based on genetics may play a large role. Some of this may be medicated by major histocompatibility molecules(genetically determined). Some patients only have IgM responses which made bode poorly versus those patients who develop a robust IgG response. So far we cannot do much about individual genetic based immune responses, but such things may have prognostic and or treatment value.

17 comments:

jenbooks13 said...

Hi there. If you can send your patient to a neurologist to demonstrate small fiber neuropathy (David Younger at NYU is doing an ongoing study on this now as well as tilt table and other tests to demonstrate neurological impairment in lyme), you can probably have a good standard of care basis to prescribe the IVIG. This kind of neuropathy is fairly common in lyme patients with high pain levels (the degradation of the small fibers seems to increase pain perception?) and probably a lot easier than trying to find subclass deficiencies.

I am leery of Cowden herbs and the LLMD's who prescribe them with no personal herbal training. Cowden herbs are often common herbs that are renamed and the prices jacked up. It's very suspicious.

The problem with Buhner's program is when taking a melange of herbs you need to be under the care of a master herbalist and not just self-treating, it could be dangerous...

Other therapies that you may consider alternative do have a sound basis and could help your patients if they can afford them. For instance some of the damage done by the bugs/toxins, the drugs/toxins, etc, can be temporarily reversed with great symptomatic relief through IV nutrient therapy. Specifically IV "pushes" (relatively low dose by CAM docs' standrds) once every week or two with some Vitamin C, a few B vitamins, most importantly magnesium, and some calcium, almost completely diminish my lyme-induced fibromyalgia. A solution--only temporary--but if I'm stuck with those I'll take what I can get.

In addition pubmed literature shows lyme and babesia oxidizing glutathione, therefore IV glutathione really helps with energy, mood, pain, everything.

Hyperbaric oxygen, for various reasons (it may reverse some of the subclinical vasculitis done by babesia, and it definitely helps suppress lyme proliferation) can help about 1/2 the patients who do it.

IVIG can work wonders for a small portion, others may not respond.

These are just things I had to turn to without antibiotics.

If I decided to do herbs I might want to go to a Chinese herbalist who was about 90 years old and wizened with age and wisdom ;), however how would I know the herbs weren't spiked with melamine! No kidding.

Burgdorfer did find worms but somehow I don't think they're the key, I think mainly lyme is. I mean, look at syphilis. Spirochetes are sophisticated enemies.

Seibertneurolyme said...

jenbooks,

Many lyme patients do not have the $6000 or so to pay every 3 months for the testing required by the neurologist in NY you mentioned. And that doesn't even begin to cover the IV IgG charges.

Sorry, but I have a problem with a treatment that is patented by an MD (the nerve biopsy test you mention) and the same MD told hubby that he helped write insurance company guidelines for the use of IV IgG. Seems to be a conflict of interest to me.

At least the other neuro in CT using this therapy relies on the subclass testing which is standard insurance guidelines.

If the nutritional IV's are so helpful for you, then have you ever thought it might be a B vitamin deficiency which is causing the nerve damage and associated pain? Or maybe you were just talking in generalities and not about your own case.

I would be very curious as to whether antibodies to myelin and neurofilament would show up on the blood tests available from Neurosciences in your case -- tests were originally developed by the Immunosciences Lab which I think is only involved in research anymore.

I think it is amazing that Lyme and these tickborne infections can cause so many different neurological presentations. Hubby has intermittent Parkinsonian tremors, myoclonus, dystonia and seizure-like episodes. But neither of the 2 neuros I mentioned or the other 20 some neuros hubby has seen have been of much use.

He does have multiple white matter lesions and an abnormal SPECT scan. Been tested for some really exotic things such as stiff-man syndrome. But it always comes back to tick-borne pathogens as the most likely possibility.

dogdoc said...

Syphilis is a very simple organism compared to the Borrelia spirochete in all ways- genetically, biosynthetic capability, and ability to adapt within the host. It is not very diificult to treat either.
If I'm going to put something expensive IV in me- I want Tigacyl, a couple of third/fourth generation cefas/carbems, a psuedomonas spectrum pen, clindamycin, and the hope of not having to treat this stuff any more when I am done!
Jenbooks- have you studied other chronic bacterial diseases and the treatments for them? Antibiotic combinations can effectively treat and reduce the length of treatment for many severe, longterm persistant diseases. They reduce drug resistance and recurrence as well. Many of these conditions were not treatable effectively until we found the right antibiotic combination. It is worth some thought and trial in this area I believe.

Jennifer said...

Do you use SPECTRACELL testing on your patients?

My LLMD does and it shows exactly what a patient is defiencent in and then you can base you treatment plan on that.

lymie said...

Not clear on how Burgdorfer's observations of nematodes in tick innards could relate to visible worms in a human stool. There is a big difference in size.

Apparently parasites are not uncommon even in developed countries, and there may be unrelated infestations of various parasites in addition to tickborne pathogens in the same patient. Unrelated in original method of acquisition, but presumably having this mix will have disease ramifications.

jenbooks13 said...

To various posters:

Bea, I know you had a horrible time with Younger. I have mixed feeling about what he's doing. "Artist Di" got a 10K grant to get his testing and then got IVIG covered on insurance and it's done her a world of good. As you may know at one point she almost died of tickborne illness and then was put on low dose steroids for the widespread, maybe "autoimmune" vasculitis and IV doxy starting at 20 mg twice a week and she slowly regained herself. When she eventually ended up with thrush and other problems from the steroids she switched to the IVIG which seemed to "serve" the same purpose and was even more helpful in other ways. In addition the amount of abx she does should not be doing anything but they DO, she also does rifampin in a topical cream! Low doses of everything. These are the kind of cases it's useful to post here for LymeMD in Montgomery as he is trying to help so many people and we may be able to help him with such info, too. The good part about Younger is he may be setting a precedent to treat some neurolyme with IVIG on insurance, much like Guillain-Barre or other neuro diseases. And that's a good thing. The bad thing is expense and perhaps arrogance I don't know.

Dogdoc--sure I know, syphilis is more easily treated. But did you read Pox by Deborah Hayden. When untreated (which essentially resistant lyme IS) it was devastating. I'm just saying I don't think it's the worms that are the problem, they're probably just superinfections based on suppressed immunity like the chronic strep some lymies get or shingles etc...

Yes I know about multiple drug therapies, look at the new approach to tuberculosis.

However I just cringe at the amount of drugs that roll off the tongue, some people can't take them! Case in point again Artist Di suffered serious pancreatic damage from mepron/zith. That will be with her to some extent for life.

I would like to see us take a better approach which has to be through good science, I really have to stop mouthing off and contact some scientists. It's just overwhelming as it is--life with lyme. :) And really perturbing, *really* troubling to me is its getting more widespread the misunderstanding is just as entrenched. I'm extremely upset over the classmate of my god-daughter, who has been so severely ill since camp in June in upstate New York, with crushing headaches and stomach pains, and because "it came back negative" (lyme test) the mother believes the doctors and has taken her to a zillion specialists. She hasn't gone to school this year. I was unable, I think, to convince her to see an LLMD. That girl is 9 years old. Then my friend's nephew who jogs with deer daily has had inexplicable illness for two years for which they put him on steroids. How widespread is this becoming? This is the "thriller novel" aspect that LymeMd discussed that is so horrifying. A plague in the open, and openly ignored.

Bea: No it's not a b vitamin deficiency. I only get b5 and b6. The former is good for adrenals the latter potentiates magnesium and it's the magnesium that imo helps the fibro. That's just my view. I did not "develop" a B vitamin deficiency from lyme.

I tend to treat myself "empirically" and "intuitively" which I am sure would horrify many docs both standard and CAM. Too bad. I gotta survive!! If I didn't do what I've done, I'd be bedridden or dead!

tickedoff said...

I think all doctors such as yourself and chronic lyme patients like me are just drooling for some strong scientific based evidence and treatment protocals based on concrete biological principles and there in an enormous void. Just as in the snake oil salesman time when con artists swarm in to hit a vulnerable group, what I have seen and experienced first hand is what I would now call some doctors preying on those vulnerabilities. Not you but with book after book coming out from the LLMD's (as they call themselves)costing 30.00 or more with content that I could write from review of internet information and a little ingenuity. Some charge enourmous amounts of money without the background to substantiate it. I know of the author and book you reviewed recently and know of many patients who were treated by that LLMD or CAM. It was tried to push them into expensive IV vitimin treatments and multiple expenseive supplements sold there. Patients either cannot afford this or will go into debt doing it out of desperation. No one claims to have improved and some claim quite the opposite. We are a vulnerable group and must be careful and I hope the doctors practicing this way calling themselves ILAD doctors quit because it is just what the IDSA wants to discredit an organization with members of outstanding credentials. I thank you for not going in that direction. There are obvious good habits to maintin like a good multivitimin, sleep, good diet. To the other obsessive practices I see MD's who have lost their licenses in multiple states due to neglegence (not treating Lyme) getting into this and others stocking their cabinents with what can be ordered over the internet for 1/2 the price. Lyme patients should check the background of the doctor they are seeing and check into any supplement,its cost on the internet and sound reasoning for using it.

tickedoff said...

jenbook13....Its obvious you think you are smarter than the MD's on here. You correct Lymemd on his approaches, say what he or she should or should not consider, correct dogdoc. Well, please quit junking up this site. We would like to read the case studies and comments and really learn from them. Your not smarter or more cleaver you just want to get on a site where you have slight knowledge. Please go away or make relavent comments.

jenbooks13 said...

I'm one who benefits enormously from IV nutrient therapy.

It takes away: low grade fever, bodywide pain, and severe depression.

It gives me more energy and more of a feeling of "well being" (real well being is elusive).

When I stopped for nine months, I slid downhill. By the end of nine months with no IV nutrient therapy, I was waking up in severe pain (to the point of tears) in the morning. I was also experiencing what felt like biochemical depression (no obvious cause). I was experiencing more low grade fevers.

With resumption of the weekly drips, I began to improve. In fact, 24 hours after my first drip there was a marked improvement in mood.

Not everybody needs these things but there's good evidence that lyme and babesia oxidize glutathione. If you don't have a robust genetics for manufacturing adequate glutathione (and I suspect I don't since my father had chemical sensitivity and my maternal grandmother died of Parkinson's) extra may help. In addition, magnesium depletion seems common in lyme and oral supplements are useless for me.

So count me as one person who would be completely devastated if CAM docs wouldn't give me IV pushes.

Seibertneurolyme said...

jenbooks,

I think the main problem I have with IV IgG and Lyme treatment is that both of the 2 neuros who use this treatment extensively do not really test for or treat for coinfections with the newer technology such as bloodslides -- from Fry or Clongen.

At least when hubby saw both docs they only used standard antibody tests for coinfections and not even the best labs to assess this aspect.

WIthout knowing if the patients had coinfections then it is really hard to gauge just how effective the treatment is. If one doesn't get well or better with IV IgG it may be because of an undiagnosed or untreated coinfection and that really obscures the success or failure rate of such a treatment.

Sorry if I sounded so cynical. I just wish there were at least some neuros who really understood Lyme and all the tickborne coinfections.

bitten said...

I have never found a neuro that knew what to do about neuroLyme either. They did not test for other infections or diagnose clinically. I think I saw on IDSA website that they have no recommendations yet on treatment of neuroLyme. Soon hopefully. I have been approached to use the high price IV's too. I'm a single parent and definitely dont have the $$. I get vitimins that disolve under the tongue or are liquid and they are very good. I think Lymemd is clear on where he stands on this so glad they helped someone but enough has been said.

jenbooks13 said...

Bea, you have never ever sounded cynical. You have been a true hero all along. I only admire you and your husband. I wish I could think of something to help him. In the meantime you have kept him alive and functioning through hellish challenges.

bumblebee said...

As to IV vitamins and IVIG, my daughter takes both, and IV iron, and rocephin and flagyl and zithromax and valcyte and gabapentin and the meds for pain, sleep, allergies, arrythmias, etc. etc. Unfortunately she had this disease 13 years before she was diagnosed, with her health deteriorating all that time. Her immune system is very deficient, she's anemic, she is in intractable pain practically throughout her body. The IV vitamins make her feel a little better, the IVIG, to early to tell yet, the abx, nothing so far. In my opinion one has to build up the immune system in order to fight and beat this bug. She has trouble with getting a proper diet, so the vitamins are needed, (her doctor prescribed them, I order them from a compounding pharmacy and mix them myself from a wonderful megavitamin recipe), she has a very depressed immune system, so the IVIG is needed. For whatever reason she gets very anemic, haven't figured this one out yet, as she no longer has periods, so she gets IV iron. Whatever it takes!!!

And as for some on here that do not like the posts of jenbook13, at least she has suggestions of other therapies that are sound. Even if you do not have the funds for these treatments, one should not discredit them. A neurologist isn't the only Dr. who can prescribe IVIG, check with your immunologist/allergist, see how your immune system is doing. One probably already knows the neurological system is in the pits.

lymebytes said...

If I ask a question that question is for a doctor; dogdoc or lymemd so jenbooks13 please refrain from responding to any of my posts. Lymemd has made his position clear on how he feels about CAM, Alternative treatment and other such things. He has no use for them so please keep those discussions out as this is his blog site. I find your need to correct the doctors protocal with his patients completely out of line but I hear your yearning to be one of "them". Your not. You read one summary and he has seen them for years yet you correct, suggest and other. Really, we are looking for hard science here to banter back and forth and you come at us with IV vitimins. Go to med school, treat chronic lyme for 10 years and come back. The people on this site are highly informed and have been dealing with this illness for many years. Lymemd created this site for awareness and to take some questions from I suspect his own patients. You interfere with that to the degree that you really think you could do better in treating them. Dr. Singleton has a site that you would fit in well with. Ken Singleton. Good Luck there

bumblebee said...

If LymeMD intended this blog to be read and responded to by only his patients, please let me know. I am not a patient of his, but I find his blog and the comments very interesting and at times helpful. I don't understand the hatefulness a couple of responders have toward jenbooks13, she is only giving her opinion on things that help her, there is more to fighting this disease than just antibiotics, antibiotics, antibiotics and more antibiotics. Your body needs to be able to help heal itself through stregthening of its immune system or you will be right back where you started after all the antibiotics. So why not the IVIG and the vitamins? I don't think they would be considered CAM treatments, just common sense treatments. Not for killing the lyme, but for improving the immune system, which will help your body fight the lyme..

AllClearInVirginia said...

Could these be pin worms? That's curable w/ OTC meds...

Just curious. I hate to ask a stupid question, but it seems like if it's something obvious than why not ask.

ticktock said...

Not a stupid question. As a mother I can spot pinworms because kids get them. Nasty things. I read Dr. B found some kind of worms in the ticks but don't think he has elaborated on that but also don't know. It seems that Morgellons patients get worms. At least I don't have that! Something to be thankful this Thanksgiving. Thanks for the hard work LymeMD.