Friday, December 19, 2008

Foot pain, menopause, and tick borne disease

You know, I really am a regular family doctor, although most of the patients I see these days have Lyme and/or related disorders. Lyme follows me around- like a bad penny.
A "regular patient," came into to see me. She is a 53 year old woman followed for diabetes and high cholesterol. The chief complaint recorded on her chart was "foot pain." I noted that she actually had joint pain and tenderness of the 2nd metatarsal-phalangeal joint of the left foot. I quickly noted some loss of vibratory sensation in the feet which was not unusual in a diabetic. Diagnosis: foot/joint pain- etiology (cause) unknown. I prescribed an NSAID.

Not another one I thought. I reluctantly sent off some screening lab tests. She didn't have gout or rheumatoid arthritis, of course not. Her C6 peptide index for Bb was 2.34, a definite positive for Lyme disease. I asked her to return. The NSAID helped a bit. I asked a few questions. I got positives. Fatigue- numbness and tingling- brain fog- night sweats- they were all present. The sweats, fatigue and brain fog were chalked up to menopause. Her last menstrual period had been over one year ago.

Many post menopausal women I see think that menopause causes fatigue and brain fog in addition to sweats and hot flashes which can have a distinct "flu like" flavor.

I explained the diagnosis and started Biaxin, Plaquenil and Mepron. I recommended Artemesia, but she did not take this at first.

One month later everything was better except the sweats which had increased. The foot pain, fatigue, numbness and brain fog were completely gone. No, most patients do not respond so quickly.

Please start the Artemisia/Artemesin. She did.

One month later- today- she saw me. An incident at work led to an ER visit. She had a bout of chest pain with a negative cardiac work-up. The sweating was gone. It went away right after she started the Artemesin.

I explained that the chest pain was common in Lyme patients. Same meds: follow up in 8 weeks.

Menopause versus Babesia. Sometimes it is a tough call. If the hormone replacement therapy is not working as expected- sometimes Mepron/Artemesin works wonders.

31 comments:

bugged said...
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bugged said...
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jenbooks13 said...

Lucky gal, went to the right doctor.

I was thinking back about one of your earlier posts, where the woman was very sick with lyme and you tried all manner of things and IV zithromax was what worked. You had her on rocephin and IV zithromax at one point. The rocephin wasn't working.

I'm just curious why you had her on both. Do you find them synergistic? Is that typical? What bugs were you trying to get with both together?

And then why if the zithromax was working, you added in levaquin, which initially she had refused because of worries about tendon rupture (if I recall).

I'm curious what your thinking was on that. Is levaquin hitting something else or you figure rendering zithromax more effective, or...just an extra measure of ammunition. Do you think there's a good, or just a small, possibility that zithromax alone would have been the road to wellness after some months?

I know you said your brain works overtime, and you said you're impatient, want results and so do your patients.

That seems fair to say, especially if your patients feel the same, forge ahead.

And sometimes you seem to get patients who feel differently. So it was kind of amusing/nice that one guy just sort of took what he wanted--not what you prescribed--mainly minocycline, and basically got well on that (and I think you added in plaquenil?). However, do you ever wonder if sometimes less would be more?

sickofit said...

Jenbooks13 you are still here! I don't know who you are talking to. I have asked a question here. Please do not respond to any of my questions. Please give the doctor, my doctor, the chance to respond. That is what this blog is for and I damn sure know he is not your doctor. Bye. See we have known it all along and you are Monday morning quarterbacking again. Do you know what it is like to make about 100 decisions a day that will have a significant effect on a persons life. Of course you don't. LymeMD she's critisizing you and your practices again. For me the only way I improved at all was to go to more. me no like lime for dummies! do you ever think more would be less? Damn you. I need a response back from LymeMD Go away

bugged said...

jenbooks13. never comment on a question I am asking my doctor LymeMD. If you knew anything about Chronic Lyme you would not ask that. me no like Jenbooks13. I get it now. You are 13 years old. Well, Bye Bye

jmb said...

Wow. I did not know this blog was just for the doc's patients. I do not think the doctor does either. I have been keeping up with this blog because i think it is provokative. Some of you might not like Jenbooks but i think she has the same right to be here, and add to the discussion, as anyone else.

As someone with a 9-month old dx, I have a lot to learn. Whether I learn from LymeMD, Jenbooks or Mr. Rosner I do not care. Glad to read all posts with information.

Which, I know, this one does not. I appologize, and look forward to the case studies and the discussion that, along with some luck, will help us all be well enough to not be here in the first place...

jenbooks13 said...

The doctor has responded to some of my posts and queries with good information that I have appreciated. His blog is getting noticed by many more than his patients.

These are not trick questions, I want to honestly know his thinking process. I am not answering patients' questions, nor did I plan to. Only yesterday I sent his blog on with a recommendation to someone I think could be very useful to him and the lyme world.

I would suggest calming down and skipping my posts.

Thanks.

tick-tock said...

I don't think it is only for the docs patients but he has made his views clear on his treatment protocal. He has also made his views clear on alternative medicine as a main treatment for Lyme disease. He doesn't care about those who read and take in the information to think about. For someone to throw that in his face on his blog, and that is what was done, is not only inappropriate but that person really belongs with a group that has similiar views. Hey, LymeMD we know how hard you work for us and the theories you have are based in solid science. The only way we will find an answer is through docs like you who think logically, base decisions on science and experience and keep trying. I can't imagine how hard it is bucking the mainstream, having your opinions questioned by peers and now some no name blogger. Please keep it up. The Lyme community need this; but you know that and you are a very decent person and very dedicated. We are here for you. Try to blow this blogger off.

tick-tock said...

I was thrown off base by this other blogger. See what you do. Please don't quit writing on this blog. I do learn so much. This is what I wanted to comment on: menopause & Lyme. Many people do think that menopause causes drenching sweats, fatigue, mental confusion and other symptoms and would never think about a tick borne disease. It is truly scary the number of patients in other doctors offices, specialists, who are being misdiagnosed due to ignorance about this disease but I had never considered menopause but it makes sense. When will the medical community wake up. What will it take? At least the people reading the case stories might stumble across theirselves in a story and question their diagnosis. She was lucky to come to you and you could put the pieces together. I wish we could all respond to treatment as well as she did but know if is different for everyone.

dogdoc said...

We may have some philosophical differences, but I do believe we are all in the same boat. Personally, I'd rather be in the boat with the antibiotics in it and the doc that is not afraid to use them. But that is a personal decision. The scariest treatments I've seen are definately in the CAM group. Alternative does not equal safe and effective. Perhaps everyone has things to learn from the blog. I'm sure a comment on the blog is not going to make or break docs day. Lets try to gain some perspective here.

Seibertneurolyme said...

dogdoc,

Could you send me a p.m.

Seibertneurolyme@yahoo.com

Clongen has found the "mystery bug" in hubby and I think you said it was visible in several family members blood?

Would like to compare stories. Hubby has been on a total of 25 different antibiotics and antiparasitic meds over the last 5 years.

Thanks -- Bea Seibert

jenbooks13 said...

I agree she is lucky and stated that she was lucky she saw him.

As I said, these were not trick questions. I would prefer to understand the mind behind the medicines. He gives glimpses of the mind and I would like to understand and know it better.

Questions are not threats. Questions are good practice in science and medicine, and certainly he began with questions which led him down a different path.

I guess either he will comment or not as he sees fit which is more than fair.

Lyme report: Montgomery County, MD said...

My patients worry about my non-existent hurt feelings way too much. You can't do this without having a pretty thick skin. I have never personally felt slighted in any way by comments posted on my blog. Lyme disease will remain amongst the most controversial diseases for many decades to come. I personally do the best I can. I guess I am critical of physicians who appear to be taking advantage of desperately sick patients. Every answer generates many questions. As I do down this road I remind myself to keep two things in mind: an open mind and a healthy dose of skepticism.

The threat to physicians such as myself, comes not from curious patients but rather from within the medical system itself. See my post today.

tick-tock said...

Sorry LymeMD but what post are you talking about? The actions taken against doctors who think and treat outside the box (and get people functioning again) is unpresidented and its a witch hunt but why? Why this disease? All this is done in the face of massive research concluding that long term antibiotic treatment is necessary in cases of peand also a conviction of the IDSA panel who wrote the now obsolete (I would hope) conservate treatment guidelines that so many, like me failed under. I'm in the position I am now due to undertreatment by IDSA guidelines that failed and I believe the popularity of the CAM doctors is directly due to the IDSA also because of the "silence" I started treatment when EM rashes were on me. One has to wonder why this disease is different. This is not how AIDS was handled or any other serious infectious bacterial disease. The politics of Lyme are brutal but why? Why the silence? I have to hand it to you and thank you for thinking and treating outside of the box. That is the only way answers will be found. It has been only under your treatment that I have improved. I'm working again and doing some social things that a year ago would not have been possible. I am also a trained scientist with a Ph.D. so I'm not a good candidate for CAM. Lyme patients are desperate because there are no answers coming from the usual CDC or NIH. Only silence. What goes away once you say it? "silence" and the CAM doctors will go away (wealthy) when we have solid scientific answers. We are a vulnerable group and must all be careful. Well, we will be here for you when you need us just as you have been here when we needed you and I am one grateful patient so thanks.

jenbooks13 said...

Is Vitamin D "cam"? Is CoQ10 "cam"? This doctor seems to see a reasonable basis for both. And they are supplements...

Integrative medicine is the ideal approach, and it usually attracts those without rigid bias. What works, works. That's just the truth. Label it what you want, if it works, use it.

Claire said...

I hope that this blog is not only for LymeMD's patients, as I have learned a lot and enjoy reading it.

We see Dr. Liegner, who is a prominent figure in the LymeLand and has been treating for quite some time (like 25 years?)

Anyway, my point is... His methods and beliefs are pretty much in-line with LymeMD's.

Dr. Liegner has been a top LLMD for 25 years using these scientifically sound methods...none of the "alternative/CAM" stuff. I do not know how long LymeMD has been treating Lyme, but for him to have figured out what works this early in the game is pretty wonderful.

Supplements and Vitamins (Like Vit. D) that have peer-reviewed studies, and have been studied through major University's are not really what I consider "alternative/CAM"...

Also to answer JenBook's question from her first post- Yes. They are synergistic. Dr. Liegner uses IV Zithro. and IV Rocephin together in some cases, he has said they are synergistic.

Keep up the good work LymeMD.

jenbooks13 said...

I always and only refer people to Dr. Liegner who is tops. He is thorough and I do not feel he is overly aggressive. I would go to him if I could even remotely tolerate even a "conservative" protocol which I can't. Great guy.

jenbooks13 said...

However, I should add that "CAM" protocols have literally saved my life. If you call "CAM" hyperbaric oxygen, IVIG, and IV glutathione and IV vitamins/minerals in particular magnesium.

Take it if it works and you can tolerate it. Well I shouldn't say I have no bias. I would be strongly against someone being put on antibiotics along with say, methotrexate. I am pretty much against immunosuppressants, and that's a bias. I also favor older drugs that have been around--we've seen black box warnings or cessation of too many new "miracle" drugs.

Claire said...

I do not consider IVIG "CAM". My daughter had IVIG for over a year. She has low subclasses of IGG and severe nerve damage. Mainstream doctors ordered the treatment, insurance paid.

HBO is also proven for many conditions Lymies have, many patients with CNS injury w/ severe hypoperfusion have done well with HBO. HBO helped me greatly. Dr. L does prescribe HBO for a subset of patients with poor response to abx. alone.

I do not group these helpful, scientifically researched treatments with "CAM" therapies.

tick-tock said...

No, I think that one comment about being "horrified" by the amount of antibiotics LymeMD slapped right in the face. Since the Lyme bacteria takes many forms it takes antibiotics that work against those forms to eliminate them and a person with Chronic Lyme has all forms at the same time; therefor, you get individualized combinations. I am allergic to some antibiotics so I have to use others. Some give me side effects that are detremental so I switch to something that kills the same type of bacteria form but does not give me side effects. When treating Babesia, the blood replenishes every 4 weeks so treatment must be longer than 4 weeks. I do not believe he is against (I think he is for) the use of certain vitimins but when you get to things like hyperbaric oxygen, rife machines and "anti-inflamatory diet and stating that one can get Lyme by being bitten by a flea that is in another category, although he claims that for some reason a gluten free diet is good for Lyme patients. Some docs just seem to be way outside the box; they are so far outside the box they can't see it anymore. This blog is not for patients only but don't throw his method of treating patients in his face. He is very reasonable about supplements. Lets keep our eye on the ball and try to educate, work with legislation and against the IDSA's guidelines that fail 65% of the time and things like that which advance the cause,

Lyme report: Montgomery County, MD said...
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Lyme report: Montgomery County, MD said...
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jenbooks13 said...

I empathize with your outrage and frustration, Lyme MD.

It's worse than the history of syphilis which was bad enough since for 50 years active infection/late stage madness and complications was called parasyphilis--not active infection, sort of like "post-lyme." Yes it approaches evil, but I think one can parse out what in human nature leads to such obstinance. In the case of syphilis there was a terror if active infection it could be inherited. There was anxiety because there was no effective treatment (malaria therapy? Heavy metal poisoning?). Once we had penicillin, syphilis became "treatable" and then all the obfuscation melted away.

This is far more complex (lyme, with all the dang coinfections that ticks can carry and that seem to flourish across species) and to some extent the burden of "evil" rests on those early doctors and scientists who called it a virus, and when forced to admit it was a bacteria, worked hard and long to maintain their power and inviolability by saying it was a treatable bacteria and treatable short term. David Noble's work on the disconnect and rationalizations human beings/scientists/doctors can engage in to maintain their own position, funding, and prominence, is very useful here. As he said when he called scientists who had all worked on a weapons project, what were you working on? Oh I was not working on weapons, I was working on bla bla bla. I was just doing my work on this one little interesting problem funded by the government. I did not help build a weapon that kills people.

It's tragic. It's awful. But the same mendacity runs through our entire culture--whether it's industry covering up toxic spills while innocent residents get cancer or innocent children play in parks full of poisoned soils, or chemicals in plastics that mimic hormones and raise the risk of cancer are said to be safe especially when the chemical industry is lobbying and earning billions...we could go on and on.

But since Claire mentioned Liegner I should say that I am a great admirer of his 1993 paper, in which he says antibiotics may not be the answer to this "evil genius" and we need more sophisticated molecular targets.

To other posters: I voice my honest horror at the amount of antibiotics. Many of us can't tolerate that or anything close to that. What I'm trying to say is--with *this* serious an infection(s) why aren't we (*they*) looking for better ways to prevent and treat???? And why should we be stuck, 35 years after Penny Marshall, with nothing better? The current road is one tough road to hew to.

I want better research and I'm doing my best to help further that in my own way. Look at protease inhibitors--AIDS is now a chronic disease. We need research on other targets. Because you see, if we can find a molecular target that is like the "penicillin" that cured syphilis, all this politicking, insanity, mendacity, tragedy, will melt away.

Just my 1.5 cents.

As for CAM...well the docs I see are integrative medicine practitioners. One is an admirer of Burrascano. They are not against antibiotics. I just find them extremely open to whatever works. None of them say we got lyme from fleas or that we should use rife machines (the ones I know). Without my brilliant doctors to help me and to listen to my ideas and to work with me, I would be lost in an indescribable darkness.

Finally, I am glad LymeMD's patients have a doctor they trust who is helping them.

Lyme report: Montgomery County, MD said...

I agree that there will better ways to treat Lyme disease than with massive doses of antibiotics. Antibiotics cannot cure the illness, they can only put it into clinical remission. Better therapies down the road such as gene splicing to block molecular receptors are unfortunately a long way off.
Eventually everything we do today will look primitive to future physicians, looking back with a sense of historical curiosity. Much as we today view the use of arsenical compounds to treat syphilis. Nonetheless, we have to work with the tools that are available to us today. If CAM approaches are truly effective then clinical-scientific studies need to be done to validate such treatments. There should be no medicine and CAM: Ultimately there should only be medicine.

jenbooks13 said...

You are right, LymeMD, there is only medicine.

I don't know about gene splicing--there are techniques, though, to run assays on thousands of molecules/drugs out there to see if unexpectedly a few inhibit an organism. For instance, maybe something like Fosamex--a bone density drug--might inhibit a bacteria. They run these type of assays on malaria--on scourges. I think we need to get attention to those type of scientsts, for lyme.

There might be something out there now that would help weaken it and then abx finish off the job in a more complete manner and more quickly.

Even studies to determine which double or triple abx therapy is best are useful--I believe Barthold is beginning such work in mice.

Meanwhile we are left to fight the battle as best we can.

bitten said...

to understand the mind behind the medicine I think we would all need to go to pre-med, med school, residency, 30 years of dedicated practice and now seeing 100 chronic lyme patients a day. I think that is what one would need to do.

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aldrin james said...

Are these things connected to each other? I read a blog post about menopause and it is written in that article that on menopause stage there are lots of pain and changes that will happen to your body.

bioidentical hormone replacement therapy

Johnson's said...

just came across this thread. enjoyed reading...on the journey to find a doctor for Lyme Disease. all symptoms point to it...Praying that the medical community really does wake up to this epidemic

David Brooks said...

@Johnson: Yes, you are right dude and yeah I also enjoyed the thread and I'll research more about it now :)

Foot Pain