Wednesday, November 19, 2008

17 month review

A 46 year old woman first came to me about 17 months ago. She had a history Lyme disease about 7 years before our first encounter. She had been treated with a three week course of Doxycycline. Her doctors over the years had diagnosed fibromyalgia, chronic fatigue syndrome and memory loss of unknown cause. She also had a history of unspecified colitis dating back 5 years. She was referred to me by a friend. On that occasion her symptoms included: headaches- severe, diffuse total body pain- severe, blurred vision, decreased hearing, memory loss, episodes of weakness and tingling of the extremities. She reported a prior history of Clostridia difficile colitis and an allergic reaction to Flagyl. This was reported to be a serum sickness like reaction and had caused a neurological reaction- some sort of muscle weakness. Her labs showed CDC positive Lyme antibodies. She was started on Ketek with probiotics. She had a massive Herx response. Plaquenil was added. She developed a urinary tract infection which led her to the hospital. Levaquin was given. Two months into treatment she saw improvements. Her hearing had improved. Her mental acuity was better. Her pain had decreased. A month later there was trouble. She developed some abdominal cramping, diarrhea and blood. She had chills. There was marked cognitive improvement. I was worried about C. diff and I knew she had a history of colitis. I had to stop antibiotics. With nothing else to offer, herbal therapy was recommended. One month later she was mostly better GI wise. The Lyme symptoms had neither worsened or improved. Asacol was started for colitic symptoms.
I was going through my experimental "CAM" phase. I even tried the vit C and Na protocol. It may have helped a "smidgen." Three months later I bit the bullet. Ramping up the probiotics she started Zithromax and Rifampin. No diarrhea. A herx: fatigue, increased numbness and now orthostatic dizziness. Adrenal insufficiency? I started low dose cortef, 5mg twice daily. Her insurance wouldn't cover Zithro and we switched to Biaxin. Now 5 months into treatment things were gradually improving. She had crawling sensations- saw worms in her stool and had small fibers extruding from her skin.(I have a patient with severe Morgellons- I didn't want to think about this). I added low dose Cipro and gave her a couple doses of Ivermectin. These weird things improved. I switched gears and put her on Minocin. We were 7 months in. The cortef had been a success and was stopped. A strange pruritic rash improved with antihistamines. A stool test for gluten sensitivity was suggested. She couldn't afford it, so she tried an empirical gluten free diet. Colitis symptoms improved. The original symptoms were about 50% better. 9 months in her antibiotics were ramped up again: Amoxil 3gm per day and Zithromax 500mg per day. It worked. She made steady progress. Plaquenil and Questran were used as well. Vitamin D was avoided and Benicar was added to balance out high levels of vit D dihydroxy 1,25. This helped as well. About 15 months in she was 85% better. I did elicit a history of sweats. I reviewed her chart and realized she had not been treated for Babesia. Two months into Zithro, Mepron, Tidamax (which she tolerates well) and Atemensisn she is 95% better. Admittedly I did some things along the way which I might be hesitant to try now. We were able to get past C. diff and plug away. Her colitis is in remission. Her memory and cognition are normal. Her pain is gone. She exercises and functions normally. She is a new person. We are not quite done yet. It is looking good.

14 comments:

bitten said...

She is lucky she found you. Oh, don't we all wish for such success. Why is it so much harder or does it take so much longer for some of us?

Sherry said...

It feels good to read such a success story! The Lyme community needs more of these. Way to go LymeMD! :o)

dogdoc said...

You know doc- its interesting, but you are very systematic in an unsystemic way in your approach to patients. You methodically flip over each stone until such time that the path is complete. Yet each path winds in different ways. Perhaps that is a key to success.

jenbooks13 said...

I read most of your wondrous blog last night. As an informed patient with my own ideas, I have the following thoughts/information, which you can do with, what you want:)

1) The "functional" anemia you discuss at one point (not visible on lab tests) I think is due to babesia. I find that one hour in my mild hyperbaric chamber every 7-10 days keeps it at bay. Why I don't know.

2) There is no known good treatment for babesia--you find mepron/zith good? I'm surprised. Dog studies indicate recrudescence with every treatment out there, even if blood is clear, you can take completely "clear" blood and pass it to uninfected dogs and some will get babesia. Better treatment is needed.

3) Your approach impresses and terrifies me. So many antibiotics, it's almost like, just try everything, and the soup of organisms will slowly be eradicated. Meanwhile, I cringe at the description of awful herxes, of ER visits, of flareups, of rashes, UTI's, c. dificile etc. I know the territory very well as a lyme patient but am horrified that people have to take such a melange of toxic drugs for so long, and you do tell the success stories here, not the failures. I simply can't tolerate them and many can't, not because of herxes, but because of poor genetic detox and/or fungal issues that are pre-existing and not treatable/responsive to the azoles. I know people who had permanent, say, pancreatic damage from mepron/zith, who ended up so damaged from "herxheimers' that they are sicker than when they began. I envy and respect those who have the innate ability to take all these drugs. There is a bellcurve and what about those who can't?

3) That's why I think one of the next chapters in your imaginary thriller novel, has to be that we look for alternate methods to add on to antibiotics. That means we make the assumption that lyme is the original evil genius that suppresses immunity and allows the other bugs to proliferate. What ligands does lyme use to attach to the cell membrane? Exactly what does it do in each step--not just the OSPs it expresses, since that knowledge hasn't gotten us very far where treatment is concerned--what does it need metabolically, and what does it release, in particular, to inflame and open the cell membrane so it can penetrate? The latter, I think, it where it does such damage. A screwed up, inflamed, cell membrane is going to have massive impact. The other big damage is done by babesia with widespread vasculitis and damage to the endothelial lining of all the blood vessels, that may be "subclinical" but extremely damaging in a multitude of ways.

4) Your theory regarding cipro and pre existing lyme/tendon damage is interesting and may account for some cases but probably not all

5) Your points about vertical and horizontal transmission are well taken and very sound

6) You shouldn't have put anyone on salt/c. For the salt sensitive it is very dangerous. People have experienced significant kidney and heart damage, esp. lymies with preexisting cardiovascular/POTS issues. You're right it may work as a de-wormer and not much else.

7) Overall you're obviously brave and caring and a really good doc. Can you put up the failures for us to see, too? We need to learn from those. Please don't tell me 90% of chronic lymies get better with abx. It's just not the case from what I've seen.

8) The pulsing theory is very good imo. Dr. Burrascano got well that way and so did Pam Weintraub. Since we have no good tests to indicate activity/quiescence, clinical symptoms are a good measure. If you treat until asymptomatic, then let yourself fully relapse, then treat again, you will be treating the bugs when they are actively proliferating and very vulnerable. If lyme goes into "inactive" cyst and granule form like syphilis, in presence of abx, there may be months you are treating when it is inactive, that you are just damaging the body for no reason. I think you should reconsider this approach and not dismiss it so easily.

9) Ceftin is interesting because a proton pump inhibitor

10) Do I think the bugs are bioweaponized? Yeah, and I'm not a conspiracy theorist, but everything points in that direction--that ticks were considered an ideal vector for a bioweapons project, and that lyme at least was bioweaponized to be more virulent than previously, and then a soup of other bugs were added, creating the disaster we have today. There is no other logical reason for a sudden outbreak of juvenile rheumatoid arthritis in a sleepy little Connecticut town not so far from Plum Island

11) We need to engage the kind of scientists who do molecular assays of thousands of drugs and peptides, who are trying to find cures for malaria, hepatitis, etc. That's where we need research. Unless Barthold in his mice research comes up by pure luck with a novel abx combo that really kills lyme dead (I believe he is testing a combo right now), then we need to find another way to disarm lyme, a way that is synergistic with abx and more effective. I'm sure that it's out there. Right now. Nobody is looking at the metabolic pathways in its life journey, and thinking of ways to either 1) fool it into attaching to a benign chemical, the way cranberry fools e. coli, so that the e. coli attaches to the sugar in cranberry and not the bladder wall, rendering it not only harmless but happy and not mutating under selective "killing" pressure 2) add in some peptide that signals it to go dormant or to at least be less aggressive 3) add in some molecule that renders the antibiotics far more effective (aka proton pump inhibitors, but something else)

This is where we need to go next in your thriller novel, because the way doctors need to treat lyme complex today is just not reasonable. It's horrible. It's like treating resistant tuberculosis and malaria in the same patient. There has to be a better way and we need to band together to find that way. And the thing is, it might not be some toxic designer molecule. It could be simple. Consider scurvy and citrus fruits. Consider how awful untreated scurvy is, and how easy it is to eat an orange.

So, we need to band together and recruit the scientists who have the fancy machinery to run molecular assays, and we need to examine just what the bug does in its life cycle, and approach it from that direction.

jenbooks13 said...

P.S. For the patient with persistence no matter what have you considered concomitant IVIG therapy (there is a letter in the literature about a man who relapsed with IV rocephin but was "cured" when the rocephin was combined with IVIG) and/or G-CSF (lots of literature on it helping Crohn's). Whatever glitch the patient has, augmenting immune function with either of these plus abx might work?

bitten said...

I think I'm the one your asking who has had persistence. I don't know what the abreviations you are using mean. I'm not a success story yet. Did you use many antibiotics? I'm going to hang in there with the lymdmd because I think I will get better.

bitten said...

A bioweapon using a tick as its delivery method. That would be just about the most inefficient delivery system I could imagine and the target would be random. The goal of a bioweapon is quick delivery to a specific target. An accident I could believe. Plum Island I've been to. People get careless. That thinking gets us nowhere in getting well anyway.

dogdoc said...

Welcome jenbooks13.

I think your points on immunity are in the right direction. G-csf has promise I believe- both in reports (European) on adjunctive therapy with antibiotics and neuroborreliosis, and also in treatment of other chronic persistant bacterial disease in immunosuppressed patients (many isolated case reports- TB in AIDS, ect). IVIG is in use already with mixed results- I think in cases of documented Ig G deficiency it makes adjunctive sense. However at $3000- $4000 a month with some hefty side effects just as bad everything else. Need to be careful with IVIG also- if tend to autoimmunity (which a group of these patients do) IVIG has caused some very severe reactions in this population. I think all LLMD's need to start testing immune parameters more thoroughly and frequently. What is your opinion on some of the other immunostim's?

Quite a bit of basic research on Borrelia that you suggest has/ is been being done. Look to the European research. There is a lot of new work there.

I was not impressed by the new works of Barthold and the others out of UC Davis.

A number of new works in vet med on Babesia- check them out on pubmed.

I find your comment on treating resistant TB and malaria very telling- I personally think the combination of things we are treating is very similar to that one.

Think someone would design a biowarfare germ as easy to treat as scurvy?
Natural infections that are tough and persistant are never easy to treat like that- check out every other human pathogen that we know of and treat in the body that causes long term disease. Find me one example of a chronic bacterial disease with a simple short term treatment.

Reference on Ceftin as a proton pump inhibitor?

Wouldn't touch salt/C.

Lots on non-success stories posted as well.

Some of the "big" LLMD's make doc look conservative sometimes. Although, I must admit I have seen some creative things in all of them I scratch my head at.

Until we get the research we need (which I have repeatedly discussed but is not going to happen until the Lyme climate changes in this country), I am all for trying to find what works in me including whatever combinations are necessary. I'll be really sick and my husband will be gone if we wait for that. As it is, we are much better and for whatever reason, docs approach is working well.

I have the persistance and I think I am reasonably well informed.

jenbooks13 said...

Dogdoc, your posts have also been great on this blog, and I appreciated them.

It's been a while since I looked at the babesia lit and will look again, thanks. When I did look I got very interested in the apicoplast, an organells in babesia. The apicoplast shares, with chloroplasts, a common ancestor: cyanobacteria. It migrated into plants and became stationary chloroplasts; in organisms, apicoplasts. Apicocomplexa include toxoplasmosis, malaria and babesia. Therefore the research being done on apicoplasts and new drugs may ultimately benefit us enormously with babesia. But for now---I don't know. I began to research this a few years ago and then my hard drive died and I had mostly emailed my stuff to myself as PDF's and hadn't backed up my emails in a while, so lost all my research...

I take small amounts of IVIG. I do hyperbaric once a week (I did do deep dives in clinics for several months at one point with great but temporary benefit). One thing I think is useful to consider is that the derangement produced by BB, even though it is systemic and terribly nasty, might be "tweaked" by relatively "small" inputs that shift immune response. I only do 5 grams of IVIG every other week or every 3 weeks. Maybe I'm just a super sensitive responder, who knows. Actually it's very useful for autoimmune/neuro lyme imo. But I am worried about increased blood viscosity so I'm careful with amounts.

As to a designer bug with a cure as simple as scurvy, I guess I didn't quite mean it that way. I don't think if/when "they" designed it, they anticipated the molecular techniques we have today. When I get around to it, I'd like to recruit scientists.

To other other poster, bitten, no ticks are not an ineffective vector. Nymph ticks are hardy, can survive almost all over the country, and can't be seen, and facilitate transmission through the chemicals they inject in us when they attach and bite. No, bioweapons are not meant to be instantaneous killers. They are meant to hobble, incapacitate, they are stealth weapons, and this is a pretty darn good one. As for usefulness, I have to think out every aspect of the phenomenon/epidemic so as best to understand it. That's just me and so I can't shut off in my own mind where it came from and why there is a concerted effort to pretend it's not happening, as per the thriller novel that this blog so evocatively depicted. If you don't want to think that way, or ponder it, that's okay with me.

dogdoc said...

jenbooks13- What type of immune workup did they do in you? What variables are being monitored? Which IG product are you using?

bitten said...

Well, sorry about the correct comment. I only worked in the most secret unit of the Army for 7 years. Our govt may be inept at things but they don't target kids and women and families. Its just not done. Man, have some fun. Quit that negative thinking. Chill out some.

bitten said...

jenbooks13: Its really simple. Plum Island is owned by the U.S.Army. Yes they develop chemical and biological warfare agents there but not to attack the U.S. citizens, children, families and medical system. No nymphs would never be used as the transport. Too many flaws. You need the mice, deer, other hosts. We are smarter than that in our development and deployment of weapons. We know our targets and make sure the transport will get the target and no other. Its an absurd theory by any means. Logically there are too many potential diversions and flaws. It is an absolutely absurd thought unless it was an accident. This would go down in history as the most flawed plan if it were a plan, which I guarantee you it is not. Dr. Lund has found a "clone" of the Bb so check that out. It is found in the US and UK. No, this was not planned. Lets keep our eye on the ball and get well.

jenbooks13 said...

Dogdoc, I use Gamunex, because it contains no sugar or salt. IVIG with sucrose has a higher risk of causing acute kidney failure, although with the small amounts I get, that would be unlikely. When I got Gammagard, which contained both sugar and salt, I would get very thirsty during the treatment and extremely ravenous. The brand that has the most sugar and the highest risk is Carimune, and why they allow that to continue to be manufactured in that way, I have no idea. This is one thing that infuriates me about medicine--why take the risk? Why damage any patient's kidneys when you can make a formulation that is much safer. Anyway, this has the least side effects for me and I believe it's the best out there.

I have had no immune workup in terms of IVIG recently although originally I was tested and had *no* subclass deficiencies and have not been worked up for small fiber neuropathy (ala David Younger's work). Why does it help me? Well I suspect it has to do with 3 things: 1) the specific sugar in it which has been isolated and at some point will be synthesized as a drug, helps dampen the "autoimmune" response 2) on a related note, if you are an HLA subtype that has more trouble with the organism, you're getting a lot of HLA subtypes in the IVIG and again, dampening an inflammatory response and 3) it takes care of common pathogens you may be struggling with as freeloaders on top of BB immune suppression.

On that same train of thought--small inputs with large impacts, I take a very expensive frozen peptide, Comitras, manufactured by Atrium Biotech now owned by Douglass Labs. It was recommended to me some years ago by an M.D. who had chronic lyme. It is basically a very purified active form of dogfish cartilage. Now why would it help me? I speculate that because BB avidly adheres to the collagen matrix, and probably not only degrades it but may interrupt/siphon off/take for itself stuff that collagen makes, that this product helps restore some of the signalling factors and dampen the symptom cascade. Boy, I hope I'm making sense. I found greater energy, and a reduction in "buzzing" or what Amy Tan called Dolby Digital Syndrome. In fact the buzzing basically goes away when I take about half a bottle a day (60 ml bottle).

These are very primitive versions of what I think we should be looking for in the bigger picture--thus my rather sloppy metaphor of scurvy and citrus.

The reason I asked the good doctor here to list his failures was because this concerted abx approach works in some and not in others--In retrospect since they're as he says ongoing cases in progress i.e. he won't give up and they won't give up, maybe he could post at some point as to the common factors in "difficult" cases that don't resolve in a year or two. IE I know they're out there as I talk to such people. Those who develop MCS with lyme and would be killed by this amount of drugs. Those who get better on microdoses of IV doxy or rocephin. Those who are basically chemically poisoned by their treatment regimens--not a herx, but poisoned, maybe because genetically their detox mechanisms are just not as robust. Those with overwhelming fungal or viral problems. Etc.

I'm glad you and your hubby are feeling better & better. I want to say again it seems like this doctor is very, very good. IE the recent post where he figured out it was a gallbladder problem while idiot gastros couldn't (why the gallbladder in lyme? I guess because the toxins keep recirculating in the bile).

Bitten--because I'm convinced that scientists working on bioweapons "tested" them in a few hotstpots around the country, near Plum Island and Ft Detrick, you think I'm not having fun in life? I'm kinda confused about the bridge you just built, roflmao!

Nah, I'm a realist, that's all. Let's leave that aside, you seem to have taken it personally because you worked in the military, and it was just one comment I made in passing, so why don't we move on from that. Thanks.

Seibertneurolyme said...

Jenbooks,

Why the gallbladder in Lyme? Very simple answer -- research the connection to Lyme and choline or acetylcholine or phosphatidylcholine. Pretty much explains why the brain as well.