I am dragging my butt around today because I started reading Weintraub's book with above title last night. I couldn't put it down and finished reading at 2 AM. Great read! She spent 6 years on the book and provides invaluable insights as to how we got to where we are now. It reads like a novel: the politics, the personalities, the egos, the intellectual fraud, the vitriol, the personalization and degradation of what should have been dispassionate discussions amongst caring professionals into an all out street brawl with all the trimmings, the distortions, the lies, the backstabbing, the selective use of science to accommodate forgone conclusions, the "high tech lynching" of professionals by others with more "power" and testosterone; its all there in plain view. The patients who are left out in the cold are also clearly depicted. She talks about "Lymeland," a secret place where "Lymies" and their docs go, underground and in the shadows.
She said she had trouble ending the book. I hope that is because the final chapter has not yet been written. She talks about the 3 NIH studies relating to chronic Lyme. She exposes the deceit and treachery of those involved. The IDSA holds fast: there is no chronic Lyme. The Klempner study (which is open to much criticism) showed no benefits with prolonged antibiotics. But wait a minute. The Krupp study showed marked improvement in the target symptom, fatigue. The Fallon study for neuroborreliosis showed dramatic improvement which was transient and returned when intensive antibiotics were resumed. I must of failed math. Two of three high level studies demonstrated that chronic Lyme responds to long term antibiotics. The IDSA only looked at one study and ignores the other two. They must be better at math than me ( I went to a State University, not an Ivy League one) . She presents a wealth of data from animal models, but this doesn't count either. Maybe only in horseshoes and hand grenades? My only curiosity about the book is why she decided to completely omit the whole L-form issue. She certainly mentions more controversial issues including Mycoplasma fermentans.
Double kudos to Pamela Weintraub!
Looks like I'm going to be losing a good night sleep too. Didn't get anywhere with website- one doctor nonworking number, other 2 out of network (which not first choice if lot of costly stuff but an option if can't find a better one). Playing phone tag with Barbara at ALADS but still trying. Next round of MCV guys today- taking a bunch more tests, ambulatory eeg, chest ct, antibodies for some rare cancers with no given name, and at least humoring with a western blot. Can't have Lymes if one band shot IgM and one band short IgG according to IDS group there- asked whose criteria- stated study of like 250 patients with 83% sensitivity if they used that criteria. This it what the high level specialists are calling and absolute rule? I didn't go to Ivy League school either but I grew up in a family of research scientists and I can think. What would endpoint for Lymes vs nonlLymes- can't culture the stuff worth a darn and we are not killing the patients at the end of the study to histopath brains. Besides- 83% stinks and 250 patients does not a good sample make. Haven't seen the study but I can bet from others on Medline didn't stage disease clinically and group results on stage and probably hand picked out half of the patients that should have been in it. Would be laughed out in physics community, thats for sure. Do you know of any studies discussing interpretation of western blots in serum and csf? Haven't found a lot yet. Also, was able to get him on Doxycyline - 100mg tice a day in the meantime in case what they were sure wasn't there was. Any chance of this doing anything we could see within two weeks that would give us a clue? Glad they are doing a full workup- people with other disease can get Lymes too and also may be able to do rule out exclusion fight better with better work up if thats all we have go on in end. Have Johns Hopkins referrel from other neurologist cooking but it doesn't sound like I'm better off there either. How can these guys be so cocky sure that if a patient is two bands short, it can't be? Man, my field isn't that way- things are always changing and what was right two years ago is now wrong. If you operate with that level of belief in your tests that you can't see the patient, youv'e got one foot in the grave in getting your patients fixed. So I have a Doxycycline responsive disease in the end and not an official name- but they looked like Lymes, tests didn't show anything for sure and I treated on clinical signs and the disease went away. MY PATIENT IS STILL FIXED. Thats what I got into this to do. If I think it looks like Lymes and I have no contraindications, my patients are on Doxy while I waiting to get blood results. Why let it get worse for a week? I test for all ruleouts, not just Lymes, but covering the most common makes clinical common sense.
More pick your brain- visual field defecits that are nasal and map on fancy computer test as central in the brain and not in optic nerve.. heard of in Lymies? In the case R only. Not asking for diagnostic advice- just what a dr who beleives in chronic Lymes has seen. Can't see what you don't beleive in. How about partial motor seizures of frontal lobe causing temporary paresis and out of it mentation with loss of time and full recovery in a short cycle of 1-2 hrs in clusters over 2 day time (possibly induced by Pred for "trigeminal neuritis" however big temporary improvement in intention tremors, balance, fine motor control, clear mentation vs slow, memory and processing issues, lifting of lethargy, return of bright and colorful vision, ect.- no effect on trigeminal signs), Pred with antibiotics for resp infection w/ asthma ok, Pred for neck same better temporarily but then acute collapse- er dr and nuerologist said not just disc- neurosurgeon said disc and cut him now. Iv solumed and antibiotics or surgery (ha-ha) gave us 4 great months. Tell me how neck surgery going to change cerebellar signs, mentation, and lethargy? Spinal signs no change or neck aches. Very complex case but just wanted to see if you'd seen anything like.
Cases like this are common. A SPECT or PET scan of the brain will show changes in brain metabolism in cortical areas which are typically seen in neuroborreliosis. There isn't a single neurological symptom or syndrome which has not been associated with Lyme disease. Lyme antibodies in CSF are diagnostic. Most Lyme patients I see with meningoencephalitis were diagnosed with viral meningitis. Few docs check CSF for Lyme antibodies. Most check PCR which is universally negative. Some researchers check C6 peptide index levels in CSF which are frequently elevated. The 23 kd band is highly specific for Osp C. Many LLMDs are comfortable making the diagnosis based on this single band. Lyme is a clinical dx. Everything sounds like classic Lyme. If I was going to use oral antibiotics I would pick Ceftin and Minocin. Minocin is reported to pass the blood brain barrier better than other oral antibiotics. Sometimes it works. It there is a lot of neck pain And given the extent of his illness, co-infection with Babesia needs to be considered. If he has drenching sweats I would definitely recommend adding Zithromax and Mepron. John Hopkins is not Lyme friendly. University experts and LLMDs are reading different stuff. I don't do this blog to solicit patients but I like a challenge. Barbara can give you my info if this could be helpful. Good luck.
Please read my blog about the swollen knee. The same principals that apply to synovial fluid analysis also work with CSF analysis. The bacteria are tissue specific and have learned to avoid dwell time in all body fluids. The organisms reside in the meninges or the synovial tissues. Lyme foot prints, the antibodies are seen in thses fluids. The tests are not FDA approved blah blah. The science is solid.
Unfortunately, no band 23 or swollen knees att. Never that easy is it. Will ask Barbara re info if she calls me back. Chances of you being in Anthem Healthkeeper network in Germantown are low. However, some one who thinks worth a lot in my opinion. ok- Ceftin, Minocycline, and Zithromax. What is mepron- need to look that up! Babesia not being done yet despite my mention, will fight for next. Will try to find your blog on swollen knees, but no obvious fluid for years- don't think I could get a good tap if a dog. Don't see any SPECT or PET scans coming- doc is barking up tb and cancers from what I can see. I have def. learned to look in csf or joint fluid, but these guys seemed to have forgotten what a direct culture or antigen finding meant. Antibody titers in all dz I know of are suggestive and supportive of clinical signs,: finding the actual organism or it's antigen in ELISA if reliable are diagnostic in most cases. Never say never in medicine. You'll eat your words for sure at some point. Anywhere in Richmond, VA Lymes friendly? Insurance seems to take mason-dixon line or a bit below actually seriously.Think IV is best bet given extensive cns involvement. Have 4 kids to feed also= always issues. It not that much per bag, where do they get off charging that much? Sorry, pet peeve from vet med where lots of good drugs are restricted from me due to cost.
By the why , whole system seems to work that way- not just Lymes. All is bought and sold on the $ of the drugs companies at least in my business. Very little pure research exists. If they have a drug for it, dz is prominant and "underdiagnosed". If not, it doesn't exist. $$$ run the system and pharm co's lobbys have a lot. That's the way it is. Wrong or not. All you can do it win in the end patient by patient.
Ok- Mepron is atovaquone so got that one. Found knee blog- makes sense. Where is all this science correlating different bands on western blot? Can't find the studies.
Reading Igenex summary- realized do have 23 just on Igm blot. And 39 on IgG. But that's in csf. blood still a week away. Do Lyme antibodies move freely between blood and csf or inhibited by blood brain barrier?
Patients can have specific Bb bands which show up in spinal or synovial fluid. They may not be present in serum. I don't know why.
Either way: He has + evidence of Lyme. IgeneX is a good resource. Other sources publish the specific band associated proteins. I don't know them off hand. I am afraid the docs are going to miss the boat. Life is complicated; make sure he gets into competent hands. See "Under Our Skin" and read "Cure Unknown" please. Bad care can have bad consequences. Sometimes money has to be a low priority. Wish it were otherwise. Good luck.
You have been very helpful. Got more reading done on your suggestions- book and documentary on my tomorrow list. I see the writing- they are going to miss the boat unless we have the right 5bands on blot they took today. Even at that, I'll only get a month of Rocephin out of them ever. Will let them go thru their thing to get rest of exclusions on insurance and if we are lucky first round of iv, but need to get good Lyme doc on board now before they finish. Should have blot results by end of the week so will know where we stand. He seems to be stabilizing- at least Doxy is draining the sinuses. Now- I guess next step is getting Lyme doc. Barbara gave me a name in Reston and Parksly (sp?) somewhere on coast. But unless you got something great to say there, Germantown is not that much further and I like you already. Forget to see if I could get info from Barbara- will try again tommorrow. South Carolina and San Fran not ruled out but maybe better to at least get examined here and let someone who knows more than me decide. Money will go a lot further here. We'll find it somehow whatever we need. Bad timing again- still paying off tearing apart house to get rid of mold and all the kids asmthma hospitalizations. But I hear you loud and clear on the effects of bad treatment. What type of travel does something like this require on average? I guess you guys are used to working with out of town patients. What do I need to get prepared for to cover my kids and work, get him up there, ect? I might be a to order some things through someones vet practice to get at cost- have to think about if that could be done without getting someone in trouble. So much to arrange and worry about. But at least maybe a light at end of tunnel that this might end- not sure I believe it yet, we've been thru so much. You have been a tremendous help to me in all this. Not sure where I would have been without it. Even just having some where to vent severe frustration at medical system invaluable. Thank you so very much.
Forgot something-there was a name on list in Chesapeake that was on my insurance companies list but her practice burned down and noone has her number. Don't know if insurance would cover any of it anyway.
When it rains it pours. I like dogs. Call me.
Just made a really long comment that google dumped. Probably saved you what my clients give me- as a client I feel guilty for imposing on you. As doc, I understand I sometimes am the only one who will listen and at least try. Will never have the same perspective again- will always understand my clients happiness for walking them thru and helping them understand what is to come. Have always just said, it's not a big deal. Now it really means something I will understand and never forget. Thank you for everything and I'll call you whenever Barbara calls me back .
Getting your degree at a state university suggests you have and excellent understanding of math - in terms of money.
I hope you will look closely at using the Stratton/Wheldon protocol for Lyme patients as well as cfs or MS. The patients I know who are fully recovered are those who used some form of Stratton's protocol for 2-4 years. It seems to be working.
Panic leaves and reason returns. Incredible what a glimmer of hope can do for you. Got the first good nights sleep in months last night- no longer so tired by 10pm I can barely string two sentances together. Woke up to a still improving day by day husband- nothing dramatic but over the week the drifting in and out of the mental fog/ confusion and slurring words has ceased. Had enough concentration to work for at least half a day and made in until 4 pm today before falling in bed. All other aches, pains, parathesias, ect unchanged. Had a chance to read thru rest of ILADS stuff- one more piece of puzzle placed. I had been so scared about wierd gi stuff- it was like his gut was losing neuro function bit by bit from top to bottom. Wheldon's stuff (personal and professional) and walking thru chlamydia /lymes/ ms / other chronic neuro dz again on PubMedCentral with new eyes all very interesting. A web for sure- infectious triggers to autoimmune disease and immune reactions to persistant,unclearable organisms (some where the organism is benign, but reaction to it causes dz) well known in vet med. With the diagnostic tree that seems to be from what I've seen would further cloud issue- patients with signs thought to be ms are usually given mri and if show lesions, are diagnosed with no further work up. Patients thought to have lymes neuro signs given bloodwork and if they pass the magic criteria, are diagnosed with no further work up or imaging. Never the twain shall meet. So was minocycline improving ms- or was ms Lymes that was never diagnosed? Or is ms just same biological endpoint for triggered autoimmune sydrome and ongoing immune reaction to persistant organisms of different types? ms has many types of courses of disease and type of presentations. Read a lot about ms (thats what I was thinking before might be the problem and was trying to get someone to take it seriously) and it always looked like a grouping of diverse diseases with the same endpoint to me. The magical ms diagnostic mri lesions just nonspecific focal inflammation if you look at how enhancement works. Typical medicine- we've got this new thing so lets try it on ms patients, then wow ms patients have these lesions alot, and therefore these lesions are now the only way to diagnose ms. I grew up in a family of research scientists in physics- must be why I have never seen the logic in correlative studies with a zillion uncontrolled variables.
A curious thing in Wheldon's personal recounts of his wife's first antibiotic days. Last month they started Amoxicillin for sinuses and we had 3-4 horrible days - headache behind eyes, photophobia, neck stiffness and pain, vomiting with pain when severe. The over another week got to thinking better than I'd seen him in a while and actually had a few days of energy in ams. Then he went back to bad with from my calender, would have been when antibiotics stopped. Wasn't thinking Lymes back then (pretap results) but could go back and correlate with signs journel. His stuff goes up & down so who knows. Didn't see anything when Doxy started.
Anyway, much calmer and ready to start next phase with some hope in time we can get it gone or at least controlled. It's not a scary unknown- it's the evil we know. And there is an army forming against it - a small but formiddable force. Will call you as soon as Barbara calls me back and the journey shall begin. Thank you again for everything. Wonder what joke my husband going to make up for this one- every sign gets a new joke. In the hospital in between episodes when the fog would clear, he said " Don't worry. I figured out a great way to deal with it. I'll just get a sign that says "I'll be back in an hour" and lay in on me when I start to go. Then when I come to, I'll just flip it over to "I'm back". That way everyone will know at work whether it is ok to ask me a question or not. You'd have to know him to understand, but he's got a good attitude and has never taken any of his signs too seriously until just recently. Even now, he's saying no reason to worry about it- if it gets me, it gets me, whether I worry or not. He's actually got a point now that I'm thinking about it. Alright, bent everyones ear enough tonight. Thanks for putting up with it.
I wrote my last post before I had read yours. Funny that's what I spent the afternoon on. I still have some more to read on it, which I will go do now since the whole house is asleep. Peace and quiet.
Sorry- didn't notice the different post name until email this am. There is an interesting blog from patients using modifications of W/S- suspect this chest/ sinus stuff that started in hubby with Doxy is related. From what I'm learning about on the molecular level about this very interesting bacterium, preparing for Lymes as a long term fight with different antibiotics for different forms makes sense. Wonder if we may have a bit of a heavy handed approach to chronic dz because its such an awful clinical presentation- even when we hit it hard IV with combo's, it doesn't sound like we get dramatic permanent response. It sounds like from chronic po users comments, that we may have a situation where Lymes is spending time hiding in tissues in non-metabolically active form and then we kill it off periodically as we get a suspectible form. Wonder if long term on/ off cycle of antibiotics would end up with same results? Other thing I'm wondering about is the immunomodulatory angle on these patients. Oops- gotta run- be back later.
Back again- this vacation time that we're not using is very handy for research. I'm working on understanding three angles currently. I'd already gotten up to speed on MS, cell mediated immunity, neurophysiology, ect. Was barking up ms before. Pretty up to speed on basic reasearch on Lymes across world from last week. Now the pieces are fitting togther with the rest of the clinical stuff from ILADS and Wheldon, ect. Am ending up with a library of binders full of research and opinions!
First angle of thinking is on antibiotics. Traditonally in vet and human med, we've pulled out the biggest guns we can find on all these chronic bacterial diseases (sorry- college loves where pathogenic micro/immunology/ cell biology. Was headed to Hopkins before love struck and decided to follow first husband to vet school). Anyway, our big guns are met with limited sucess. You have to have cellular activity (or cell wall) for any of our stuff to work. If you mostly are hiding out in a metabolically inactive form, only the percentage of active forms will even be available to big guns. If I were Lymes, I would try not to kill my host quickly and try to persist to be transmitted to as many other hosts as possible to survive. If I had a choice to shift between forms, I would spend only enough time in my mobile spirochete form as I needed to 1) disseminate throughout host to live in as many places as possible 2) use higher metabolic state to rapidly multiply myself, and 3) keep enough of me in this state so that I was available when my vector came along to take me to my next host. Spirochete form would be a liability antigenically even if my plasmids helped me switch some surface antigens and I was able to supress local immune system. The immune system is a big place and has a lot of different ways to get me. However, if I could find a metabolically inactive form like all of my other chronic bacterial peers do, I would keep mostly hidden away in the tissues in this as a reservoir for more mobile forms when I needed them to transmit myself around. Reasearch bits and pieces we know seem to lead to a model like this. Responses to antibiotics fit as well- can clear my spirochete form with cell wall drugs (mainstay of current treatment) but I persist no matter how heavy you hit me if I've been there long enough to make it to my inactive form. Also, I can probably create multiple antibiotic resistance as my other peers do with my many plasmids and create forms of myself without cell walls. You can get my metabolically active forms without cell walls with antibiotics that inhibit general cell metabolism and functions but big guns there don't clear me right away either. But if you wait and let me slowly come out of metabolically inactive state and kill me as I come out, you eventually break my lifecycle and there is less and less of me. I can't replicate in metabolically inactive state so you might eventually get me. UNLESS I can figure a way around you killing me as I become metabolically active. Here's where my plasmids and all of my tools for having survived so long in the genetic scheme of life might come in handy again.
This is an extreme over simplication but is my take of the plethora of microbiology literature since 1980's in us and europe. ILADS needs some updating in their arguments - they have missed some good stuff. Incidentally the us seems to have forgotten what it knew about Borrelia in 1980's in major review articles.
Notice I disagree with several common assumptions- Borrelia is a slow growing spirochyte (lab yes, but not in natural or innoculated diease), metabolically inactive forms exist that are not sensitive to any antibiotic (my take on studies- design of studies showing antibiotic effectiveness against cystic forms would not differentiate cystic vs newly activated forms, cysts were infective after being subjected to environmental extremes - ie frozen and thawed a month later-- organisms that survive these things are not picky about where they grow and hard to culture in lab. Or they make a metabolically inactive form designed to withstand such things. Works for the immune system too if you make it without typical surface antigens. Many findings of loss of spirochetes and gain of cystic forms when immune response detected as well as in different body compartments. Last way I have a different take on things, is that not only innate antibiotic resistance to metabolically inactive forms is likely to occur, but also developed resistance to antimicrobials is likely to be a factor. Antibiotic sensitivity is very hard to accurately obtain on difficult to culture organisms and often poorly corelates with in vitro activity. In vitro activity would be difficult to assess in short studies where antibiotics induce the cyst form and kill the mobile form. In addition, for a genetically simple organism- this little guy has a lot of plasmids both linear and circular and does a lot of genetic variations- so plasmid mediated and genetic forms of resistance should be considered likely. Overall, it is so easy to make assumptions (as you can see from me, all of us develope our own pet theories when heavily investigating a subject)- but many times conclusions we make now are proven wrong to us in the future. For example, metronidazole is assumed to be targeting a cyst form based on emerging from cyst studies. However, it wasn't in many previous studies without cysts(out of radar). Metronidazole seems to have considerable in vitro action in patients- however, it is an excellent antibiotic for targeting anaerobic organisms, is well absorbed and highly lipophilic with excellent distribution all over including csf. Borrelia are microaerophilic with a preference for anaerobic metabolism with an unusually composed lipid outer layer that like to hide in normally sequestered compartments. Only trying to say, although we know a lot, assumptions can become fact in our minds easily and cloud the issue sometimes. One common thread I see is the tendency towards lipophilic antibiotics with good anaerobic activity (read newer macrolides, tetracycline class drugs, metronidazole class drugs). Multidrug therapy in anaerobic bacteria with high resistance levels is used to overcome resistance- a current example is helibacter gastric "infections" (if you beleive is actual infection).
So overall, the long chronic oral approach to antibiotic therapy makes sense in a number of ways. Still forming an opinion and researching rational behind type of cocktail and administration schedules. Also working on angle 2- cytokine production and signs of disease - and angle 3- bringing organism out where you can kill it. Interested to hear what anyone thinks of my hair- brained research based ideas so far.
Ok- available research came to screeching halt. Zero long term studies found, zero. Lots of research showing organisms not cleared after standard treatments. Lots of people assuming since treatments didn't work, then no Lymes present. Doesn't add up. I found studies stating "antibiotic" treatment no effect with no mention of what antibiotics were even used. Why are microbiologists and drs on such a different page? All I can tell from this stuff is IV cephas, doxy and amoxi won't work if given for 3 months a lot of the time.
Ok- so it must be based on experiences of individual docs and what they have found working. Only thing I've found in literature of interest is number of recent works in neuroinflammation showing minocycline blocking direct lps induced cytokine response and neuroinflammation. I wouldn't call it conclusive and some results are contradictory. However, if Minocycline does have some cytokine blocking action and quicker recovery from LPS sickness associated with toll like recptors, then it may be palliative for signs of Lymes created by cytokines. With its cnf penetration and general suggestions of neuroprotective effects in various animal models, then about the only evidence based thing I could come up with is Minocycline might make sense in Lymes long term treatment. I see why an experienced Lyme doc so important besides just in diagnosis!
Wow- what a research subject. Have read about as much I can. This stuff has epidemiologic characteristics that frightening. I don't understand how we can know so much yet apply and believe so little. I guess I have to get around to getting "Cure Unkown" to understand why we suddenly seemed to forget what we had known in the early 1990's. I hope these guys have an idea of the magnitude of what they are messing with. Turning a blind eye to this one could cause a lot of problems. Typical of me, I know just enough to worry but not more. I swear when I get my family thru this, I'm going to see if we can get some funding for the major players in the field. This is big enough that someone may see $ signs in it- $ may overcome what obviously someone in power doesn't want out there. If it has a market... Maybe. That's the system. How many people have been hurt by whatever medical amnesia occurred in the 1990's ? I am so glad I'm in vet med - not a lot of money and thus power. That's the dr in me. On a personal note, I feel a very long road is ahead. Antibiotics I'm learning are hurtful to a Lymes patient, you start a new one and something hurts. It gets better after the hurt but it is not pleasant intially. Finally have your #, so can see when we can call for an appointment on Monday. Doxy thru him for a loop the first days- achey, coughing up yuck and draining out yuck from sinuses, and very muscle and joint sore. Thought he was coming down with something, but he just got better. Much better- no more fading in and out, can remember what happened 2 hours ago. Added Amoxi (since had response last month and had around- doesn't do a thing for my sinuses but they always want to give it to me) until we can get to you. Now again in the achey throes- knees, ankles, headache for this one. Was up and doing great finally on Doxy- now looks like a train hit him. Scared to think what IV antibiotics are going to look like. Whatever this is, it is BAD stuff. I am so glad we will not be alone in this. I feel this is going to be a hard road ahead of us, and we may have more than just him to work on. I'm calm and determined now- no bacteria is going to take my family and life away. It's not unusual- it's common. There are good people like you working on it. Someone who cares about his patients enough to buck the system- I can respect that. I started in school like that and haven't changed- at least with respect to trying. I don't always win, but noone can stop me from trying. You're obviously trying, and to me, that says a lot about who you are. Whether you can end up helping me or not, you have my admiration as a dr for being willing to go out on a medical limb. Esp where the specialists have been unwilling to go. They are not always right I have learned- sometimes stupid old common sense and unwillingness to give up can bring you further than you would ever expect. And you are in a society that does not understand morals but understands lawyers- you have earned my respect already because of where you are willing to go. Just wanted you to know before I go back to just worried wife.
We are patients now so I'm not coming back here. Sorry I took up so much space- feel free to delete out my self therapy. I think I just needed to feel like I wasn't alone as I worked thru all of this in my head. I obviously had a lot of emotions to let out. This was my first and last blog. Bye
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