A 35 year old female was seen by my associate one month ago with complaint of fatigue, malaise joint pain and fatigue. The symptoms had been present for about 2 months. My associate ordered a Lyme Western Blot. Bingo. Three of three IgM bands were present: Lyme disease. Here are some additional result:B12 280, folic acid 5.8, C4a 3200, vitamin D 25-Hydroxy 26, vitamin D 1-25 dihydroxy 75. I saw her 3 weeks ago. Today was our second visit. The symptoms had really been present for the past 6 months or longer. She had experienced fever, swollen lymph nodes, muscle weakness--especially of the arms, profound fatigue, pain in knees-feet-shoulders, total body pain, brain fog and forgetfulness as well as episodes of confusion, depression, word salads, tingling and drenching sweats. The exam showed weakness of the arms and evidence of peripheral neuropathy.
Here is what I think I have learned and how I applied it for this patient. Lyme and Bartonella seem to be co-travellers. It is the combination that causes many of these symptoms, especially the cognitive ones. The swollen glands are a tip off-Bartonella. Soaking sweats do not always equate with Babesia. The low B12 and folic acid are a tip-off. These nutrients are essential for the manufacture of red blood cells. Depletion of these vitamins suggest a bacteria or parasite of red blood cells causing rapid turn over and depletion. Bartonella are present in large numbers whereas Babesia are present in relatively small numbers; these vitamin deficiencies would seem to be the calling card of Bartonellosis.
Vitamin D is a useful parameter. The conversion to active vitamin D in the kidneys occurs because the immune system is attempting to regain equilibrium. This push to the Th2 state away from Th1 occurs because the infection is causing excessive inflammation. As an aside, it doesn't matter if the patient is given supplemental D or not. More vitamin D might provide additional fuel to cool off the rambunctious Th1 response: it is OK to give and may help the patient feel better. Vitamin D toxicity is a non-issue. The only potential issue is hypercalcemia--excessively high levels of calcium in the blood. This is highly unlikely and can be monitored.
Forget the whole Marshall distraction.
I placed the patient on Doxycyline and low dose Cipro. Three weeks later she is doing fabulously.
The Herx was bad for 2 weeks. Now: the fog has lifted, her muscles are strong again and even the night sweats are gone.
The old Doxy plus Cipro was not treating Lyme by two different intracellular mechanisms; it was treating Lyme and Bartonella all along. That is why it has worked so well!
The low dose Cipro seems safe and effective. This patient has allergies to Penicillin and Sulfa.
It is all coming together.
Could you please comment further on your experiences with the Marshall Protocol? Is it beneficial to long term misdiagnosed autoimmune patients with an underlying chronic infection?
ReplyDeleteIt seems there are two choices - antibiotics (if procurable) or MP...
Nice! Can you please comment on her doses of Cipro and doxy. Do you dose every day or pulse?
ReplyDeleteWhat about using levaquin instead of cipro?
Or minocin instead of doxy?
I have never pulsed. I cannot comment too much about it. Patients seem to relapse quickly when antibiotics are stopped so I avoid this approach. In this patient she went through a tough Herx first and then improved dramatically.
ReplyDeleteDoxy 200mg bid
Cipro 250mg bid: sometimes starting with cipro one daily is better to avoid any joint/tendon issues.
Mino seems to cause more autoimmune reactions early on.
Levaquin perhaps later.
Cipro also effective against Lyme- here Levaquin has lower MICs.
Dr. please answer this one - I am really paranoid about flourquinolones(them and plaquenil due to eye toxicity). As they seem to be very dangerous.
ReplyDeleteAnd I already have joint/tendons issues - plus it is very important for me to be able return back to intensive physical exercise,
I would want to avoid them at all costs ,unfortunately all my symptoms seem to point to bartonella coinfection . While I am waiting for llmd appt it seem like fluorquinolones are preferred treatment for it
Are there any other alternatives which worked well in your experience?
A reasonably good:
ReplyDeleteblog-style summary from the IDSA Lyme hearing.
Whoever you are, you are a Godsend. Your balanced commentary on this very real illness has been a ray of hope for patients.
ReplyDeleteBartonella, Vit. D issues confirmed by another excellent doctor I know--saw results.
Pls. keep blogging. This is the balance we need in the Lyme dialogue.
Yesterday's IDSA panel proved once again that medicine has really lost its way, at least with the infectious disease complex known as Lyme.
All the best.
thanks for posting. not a ton of stuff about bartonellosis. i was diagnosed with lyme and bartonella on fall of 2007. 400 mg of doxy and 200 levaquin.
ReplyDeletethe levaquin really made my body a wreck. massive joint pain and my feet were killing me. when we were done with that protocol, it too a couple of weeks but my body regained strength to the point where i felt as healthy as i did before my infection. that was spring of 2008.
now i am going back to my llmd in hermitage, pa because i am having even more profound fatigue/vertigo issues, neck pain, and lower back pain than before. it has been progressive to where i am having stiffness in my whole body. i would call it a relapse, but what is amazing is that all of my symptoms are worse than ever before and getting worse every day.
i wonder if cipro is a better solution, or if i have another co-infection that we have not found yet...
I don't understand. All I hear about is how horrific Levaquin is. Is it because it's so effective and the die off is horrible, or is it truly a very toxic drug that just makes you feel worse? I'm on it now and not feeling very confident about it.
ReplyDeleteI took Levaquin for 3 months last summer for my Bartonella co-infection. Yes, Levaquin has a bad rap, if you suffer from the bad side effects it can cause, i.e. tendon rupture, etc...
ReplyDeleteI did feel an achiness in my tendons but my LLMD kept a close eye on it and my labs. Treating Lyme sucks, there's no delicate way to say it. The die off/herxes can be horrible. I try to liken it to cancer treatment, you do what you have to do to get yourself well. The treatment can be long and hard but what's the alternative?
Every time I herx, I just imagine all the little buggies I'm killing...and try to concentrate on the fact that I'm making progress in my fight against this horrible disease.
Killing my joint and tendons is not an option, I want get back to intensive physical exercise.
ReplyDeleteI believe there must be a way to get rid of coinfections without cipro-like drugs
Personally I am started to lean more and more towards aggressive abx combined with hyperthermia . I mean it works for late stage syphilis and chronic tb , it increases abx effectiveness and BB penetration.
I am at loss why doctors here do not use it.
Here is an interesting journal article I found. I still wonder if Cipro, Levaquin, Factive, Rifampin etc are not working on mycoplasma just as frequently or not more so than on actual bartonella.
ReplyDelete1: J Infect. 1987 Mar;14:2:103-11.
Serum folate in viral and mycoplasmal infections.
Jacobson W, Wreghitt TG, Saich T, Nagington J.
The concentration of serum folate in 260 patients with viral and mycoplasmal infections was determined (305 samples). In 60% the serum folate concentrations were found to be below 3 micrograms/l. The incidence of low serum folate varied slightly. According to the infections diagnosed, low values were:
for influenza A 50% (50 patients),
influenza B 42% (45 patients),
human parvovirus 67% (76 patients),
rubella 62% (13 patients),
infectious mononucleosis 60% (15 patients),
Mycoplasma pneumoniae 73% (45 patients).
For a group of undiagnosed rashes it was 81% (16 patients).
The cause of low concentrations of serum folate in these patients is discussed.
Publication Types:
• Research Support, Non-U.S. Gov't
PMID: 3033086 [PubMed - indexed for MEDLINE]
-------------------------------
Bea Seibert
Good comment.
ReplyDeleteIt is hard to sort out the contribution of Mycoplasma, Chlamydia pneumonia and viruses in the mix.
These patients with low folate were clinically ill, presumably with acute infections.
The low folate seen in chronic Lyme patients may be somewhat different.
Many "Lyme" drugs are known to work on Bartonella. This includes Doxy and Mino.
ReplyDeleteIt does appear that "Bart" "Herxes" can be very tough.
A slow kill strategy with may be the way to go. Use milder Bart drugs, at least initially.
For instance: start with Zithro, add Rifampin--step up dose or perhaps Bactrim and then go to quinolones or IV Zith.
I have found that low dose Cipro--
250mg once or twice daily solves the problem. It avoids an excessive Herx; it avoids tendenopathy and it is effective over time.
Slow and steady wins the race--sometimes.
One more question please on the Levaquin - is it possible to herx EVERY DAY after 3 hours after taking the pill (250mg)?? All of these symptoms are head/brain related, vertigo, agitation, can't focus, like ADD almost, irritable and very sensitive to sounds.. thanks
ReplyDeleteTo fight bartonella, my LLMD had me do 9 months of Rifampin with first doxy, then Zith. This brought improvement but not elimination of bartonella. Then he had me do 4 months of Levaquin with doxy/mino. I started with half the dose (250mg) and experienced horrible all-over body pain, and he got angry becuase I was not taking the full dose (was concerend about resistance).
ReplyDeleteBrain fog/confusion/dementia-type symptoms are my worst problem. Is it even possible that I still have bartonella???
I am interested in your thought that minocycline seems to bring on autoimmune type reaction. What does this mean and why do you say this?
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ReplyDeleteI wanted to edit my post, but had to delete it and re-start...sorry about the double postings.
ReplyDeleteI was informed that low folic acid can occasionally indicate homozygous MTHFR. In my case, it did. It is interesting to me how many Lyme patients, and others with pro-inflammatory conditions, have this genetic mutation.
I have been reading this blog for hours now, I'm so glad I found it. I was just diagnosed with Lyme last week. My doc thinks we caught it early since I only had one band on the IGG (41) and two bands on IGM (41,23). I'm taking Doxy, and I feel like I've been run over by a bus, now I know why.
ReplyDeleteI have question for the Doc. I have been on Remicade for over a year for treatment of Ulcerative Colitis and I am wondering how or if this can affect Lyme treatment/Diagnosis. I'm curious because I'm not so sure that I haven't had Lyme for a while. I have had so many symptoms, but I figured they were related to the UC or Remicade. I've had fatigue and nausea, and bad short term memory issues for a long time. Not to mention for years I have been mixing up my words, I just figured that was something quirky about me. I have also experienced at least for 6 months back and knee pain which I also just brushed off as UC related arthritis or Remicade issues, now I'm not so sure. This is such a great blog, and I thank you for all of your hard work, it has been such a great source of information.
You mention the low B12, but don't seem to be treating it directly. Why not?
ReplyDeleteEnergy and cognition are impaired by the low B12 in its own right, and so improving it with supplementation -- while waiting for the Bartonella to abate -- would likely make the patient happier. No?
In my own case, my low B12 was unexplained, until I read this posting! I too had Lyme and Bartonella (and Babesia). But after treating the co-infections successfully, my B12 uptake remained impaired.
Shots helped the level, but had their own ill effects. Then I tried oral supplements, which WORK, better than the shots, due to the mechanism described here: http://bloodjournal.hematologylibrary.org/cgi/reprint/112/6/2214.
Apparently, even with uptake problems, the megadose of B12 somehow bypasses the intrinsic factor-related mechanism. And a year's supply was about US$20 at CostCo.
Thanks again for the posting -- and for this blog. I can't wait to see what my LLMD makes of your suggested Bartonella/B12 interaction. He (and GI-doc and other specialists) had no explanation for my B12 woes.
starlings,
ReplyDeletei was on levaquin for three months, and after stopping it for two weeks my body felt as good as it did pre-lyme. i was fantastic for a bout year. this april my symtoms came back even worse than before. this included a relapse of EBV which i also thought was gone. now i have dangerously low vitamin D levels (taking 5000 iu's + per day), my spleen is super sensitive and sore, and i have all the bartonella isues mentioned here. doing doxy again, more blood work and going back to see what's up.
taking olive leaf supplements for the EBV (3500 mg/day). so we shall see.
If only everyone improved so quickly. Your comments on this and other posts frighten me!! Most patients like you have described do not get well that quickly. It's misleading for you to imply that. I saw your open, and what I would label arrogant criticisms if Dr Fry. I have no idea if he is is right or wrong, but what if he is right? You sound as bad as the infectious disease doctors who criticize ILADs. If you really believe that using only ILADs based evidence tratment guidelines will cure every patient you must be very new to treating chronic Lyme.
ReplyDeleteI was diagnosed 10 years ago and have seen several top (supposed) Lyme doctors and feel much of what they do is amateur guesswork. After 4 years of antiobiotics including IV and testing and testing all co -infections, I still have abnormal brain MRIs, neurological issues and cognitive dysfunction. I don't believe there is very good medical research period. I don't believe it's right for you to write as if you and or ILADs knows all the answers and treatment is simple and effective or to criticize Dr Fry for looking outside the box. He charges 1/4 th of what mist LLMDs charge so he is not into it for the money that I can tell. His lab is Medicare approved and he us a microbiologist who has devoted his career to this. If you question his tests, be professional and call and talk to him instead of condemning him on a blog. I am not a patient of his nor have I had the tests but maybe I should. It is far less expensive to do that than to see another LLMD who is over charges patients. Some of the fees out there are outrageous!
what is Cipro - is this shorthand or a brand name?
ReplyDeleteI have possible Lyme and live in the UK. 3 negative Immunoblot tests on the NHS at 2,6,10 weeks.
Possible tick bite 31 May (no attached tick)
3 weeks doxycycline mid June - Mid July 100mg twice daily.
Symptoms not cured - pins and needles around bite site on leg and in feet and hands; also sometimes in legs and arms. Muscle pains in limbs; occasional sore lymph nodes. Wierd prominent blue veins on legs and hands, where itchy sensations. Also some purple thread veins appeared and spots.
Just seen Dr Chiodini at Infectious Diseases Hospital in London who doesn't think I have Lyme. I persuaded him to order a Bartonella test - await results.
On Monday going to Great Ormond St Children's Hospital for my 5 year old son. He had definite tick bite on 31st May. Very pale ring rash round bite 26 days later lasting only one day. Since then purple prominent veins on chest near bite, by evening time. Symptoms he reports are itchy/hot feet, legs, arms, and occasionally sore legs, eye floaters, sore lymph nodes.
Two negative Immunoblot tests at 6 and 10 weeks. Positive Elispot LTT done privately by Dr Daymond
He's had 3 weeks amoxicillin at 50mg/kg/day during August (I had to really push for this!!) and during 2nd half of this he stopped reporting symptoms but 5 days after stopping abx he has started reporting symptoms again! He has appointment at Great Ormond Street Children's Hospital at Infectious Diseases Clinic on Monday. I think he needs further treatment.
His brother aged 8 also had a tick bite on 31st May and has had few symptoms except very occasional reporting of itchy feet, sore lymph but he is also now worried of telling Mummy stuff in case he has to have medicine.
What do you advise I do next? Please help as in the UK it is very difficult to get Drs to tdo anything without a postive antibody test on the NHS.
I've had really low vitamin d for quite some time, but whenever I'm placed on supplements symptoms seem to worsen. Weird thing is that my calcium levels remain pretty high (just below upper cutoff) regardless of my vitamin d levels.
ReplyDeleteOn a completely different note, one hypothesis worth investigating is the effect of tick saliva on the immune system (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2233652).
I know that LLMD's tend to see it as a potent "gateway" for lyme & coinfections, but recent studies reveal tick saliva to be an intricate and complex cocktail with multiple weapons for evading the immune system - afterall, unlike most common parasites, ticks can take days to complete a meal, giving the saliva more time to interact with your immune system. Other studies as well have found that immunity to tick saliva often corresponds with immunity to lyme disease, suggesting that lyme maybe a confound. Interestingly, immunity to tick saliva in some people prevents ticks from completing their meal, either b/c the host can feel them or in the extreme they actually kill the feeding tick. Immunity to tick saliva is thought to be specific to geographical location as well (eg, immunity to New Jersey ticks won't protect you from London ticks), which may explain why lyme-like symptoms vary from place to place. Lack of immunity of course leaves people much more susceptible to ticks, as it essentially allows them to feed uninterrupted time and again.
The hypothesis that merely being bitten by a tick - or a foreign one - in certain people can cause symptoms maybe much more believable to mainstream medicine. Other research has found some pretty strange correlates to merely being bitten by a tick (eg, delayed anaphylactic shock in response to eating meat, http://www.medicalnewstoday.com/articles/148583.php).
Anyway, just thought I'd throw that out there. Otherwise I hope you pick up your blog, very thought-provoking and makes for great reading.
This comment has been removed by the author.
ReplyDeleteHi Blogger Lisabeth, it is very easy to understand your frustration and even anger. It has been a tough painful road and don't think we can't understand it 'cause ours is really hard too, so precisely because I can understand I dare to write you just to go back to this doctor and get the help you need and the help he is very capable of giving you. You are fighting the wrong person; don't shoot the messenger! He is extremely good hearted and knowledgeable and probably the only one that is really going to give you what you need; give him the chance to do it, give your self that chance, you really need it.
ReplyDeleteThis comment has been removed by the author.
ReplyDeleteI am getting afraid that you are not writing anymore? Please don't stop doing it, it is my daily bread!!! You don't know how many people you touch through this blogs, how much good you do, how much help you have given us; Doctor we need you! THANK YOU FOR YOUR TIME AND DEDICATION!
ReplyDeleteWhere are you? Why aren't you writing anymore? We need you....
ReplyDeleteThank you for sharing this - a real eye opener as to what symptoms might show for Bartonella vs Babesia in an "early" infection. The MP is not the only answer aside from antibiotics - "Oblivion" - there are a lot of natural and "alternative" approaches that are quite effective as well.
ReplyDeleteMy daughter has exactly the same symtoms apart from the sweating. She is being tested for Bartonella, I hope they have a good test for it here on the NHS. She also has cat scratch marks on her thigh. She is taking folinic acid and folapro really helping with the anxiety and energy levels. Not the pain or nausea though.. she also has POTs, can Bartonella cause POTs? x
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ReplyDeleteI need a lyme literate doctor in Colorado (Front Range). I had three positive markers (p18, p41, and p66) and had two supposed LLMD's turn me down as I did not meet CDC criteria for Lyme disease.
ReplyDeleteI have had brain fog, elevated liver enzymes (currently back to normal but were elevated for several months), high MCH (for over a year now though no doctor has yet ordered a VitB12 or folate test), heart palpitations, all over body aches/joint pain, and worst of all, psychiatric problems (anxiety, atypical mood swings, fear of death).
I don't recall being bitten by a tick (though I've read Lyme can lie dormant and I was on steroids for asthma about 6 weeks before onset of symptoms... I was also bitten by an unidentified blood sucking insect in Mexico about the same time, and I used to live in the southeast US). I had a rash (didn't think it was EM) at a different site from the bite about a week after the bite in Mexico.
My primary doctor finally agreed I should be treated for Lyme (4 wk course of doxycycline 200mg bid). I was fairly asymptomatic before starting on the antibiotic course (it took over 6 months to diagnose and start treatment). I've been off the doxy for about 6 weeks and have started having heart palpitations and some of the psych problems again (less severe at the moment).
Can you please recommend a doctor who knows how to treat Lyme Disease in Colorado (at this point, I'd settle for a doctor willing to see me anywhere in the US)?
I need a lyme literate doctor in Colorado (Front Range). I had three positive markers (p18, p41, and p66) and had two supposed LLMD's turn me down as I did not meet CDC criteria for Lyme disease.
ReplyDeleteI have had brain fog, elevated liver enzymes (currently back to normal but were elevated for several months), high MCH (for over a year now though no doctor has yet ordered a VitB12 or folate test), heart palpitations, all over body aches/joint pain, and worst of all, psychiatric problems (anxiety, atypical mood swings, fear of death).
I don't recall being bitten by a tick (though I've read Lyme can lie dormant and I was on steroids for asthma about 6 weeks before onset of symptoms... I was also bitten by an unidentified blood sucking insect in Mexico about the same time, and I used to live in the southeast US). I had a rash (didn't think it was EM) at a different site from the bite about a week after the bite in Mexico.
My primary doctor finally agreed I should be treated for Lyme (4 wk course of doxycycline 200mg bid). I was fairly asymptomatic before starting on the antibiotic course (it took over 6 months to diagnose and start treatment). I've been off the doxy for about 6 weeks and have started having heart palpitations and some of the psych problems again (less severe at the moment).
Can you please recommend a doctor who knows how to treat Lyme Disease in Colorado (at this point, I'd settle for a doctor willing to see me anywhere in the US)?
Lyme will likely not be treated by many doctors in Canada because the disease is dangerously political to the careers of doctors. I tested positive 5 times and the started taking all kinds of concoctions to treat it. It kills my liver like crazy but many of those things seemed to have worked. Now I only have Bartonella to deal with, and am still waiting for the pending results from rickettall.
ReplyDeleteOther than for painful swollen underarms for the past year, falling blood platelets, petechia and constantly sore liver,caused by I think the Bartonalla may eventually be cured too if I keep taking my pile full of home-made concoctions.
Don't expect much treatment in Canada if you have Lyme. Most Canadians are forced to go to the USA for treatment, or dream up their own poisons because -- hey, Lyme doesn't exist. It doesn't exist because it's expensive to treat.
In this article, from Yahoo News, you'll find out how your sleep position affects your heart, lungs, liver and stomach. Vitamins for joint pain
ReplyDeleteGood Source of Folic Acid | Folic Acid | Folic Acid Deficiency
ReplyDeleteAny vietnam vets popping up?
ReplyDeleteHello everyone!! I'm Marilyn Here in the States and I'm here to talk about what Dr. James did for me. I have been suffering from (GENITAL HERPES VIRUS) disease for the past 4 years and had constant pain and itching, especially in my private part. During the first year. This disease started circulating all over my body and I have used Oregano oil, Coconut oil, Acyclovir, Val acyclovir, Acyclovir, and some other products and it really helped during my outbreaks but I totally got cured! From my HSV with a strong and active herbal medicine ordered from Dr. James herbal mix and it completely fought the virus from my nervous system, and I was tested negative after 15 days of using Dr. James herbal mix medicine. I'm here to let you all know that the herpes virus has a complete cure, I got rid of mine with the help of Dr. James herbal medicine. I came across a testimony of Tasha, on the internet testifying about Dr. James, on how he cured Her of 7 years HSV 2. And she also gave the email address of the great Dr. James (drjamesherbalmix@gmail.com...]..., advising anybody to contact him for help on any kind of diseases that he would be of help with, so I emailed him telling him about me (HSV 2) he told me not to worry that I'm going to be cured!! Well, I never doubted him. I have faith he can cure me too, Dr. James prepared and sent me his herbal mix medicine made of roots and herbs which I took. In the first one week, I started experiencing changes all over me, after 15 days I drank his herbal mix medicine, I was totally cured. No more inching, pain on me anymore as Dr. James assured me. After some time I went to my doctor to do another test. The result came out negative. So friends my advice is if you have such disease or know anyone who suffers from it or any other disease like Alzheimer's Disease, Warts, Moles, Bipolar disorder, Shingles, HPV, HIV/AIDS, ALS, HBP, CANCER, NEPHROTIC SYNDROME HIV / AIDS, herpes cancer, Ovarian Cancer, Pancreatic cancers, bladder cancer, bladder cancer, prostate cancer, Glaucoma., Cataracts, Macular degeneration, Cardiovascular disease, Autism, Lung disease. Enlarged prostate, Osteoporosis. Alzheimer's disease, psoriasis, Tach Diseases, Lupus, Backache, dementia. Kidney cancer, lung cancer, skin cancer, skin cancer and skin cancer. Testicular Cancer, LEUKEMIA, VIRUSES, HEPATITIS, INFERTILITY., etc. you can contact the great one directly on his........@ drjamesherbalmix@gmail.com He is a good man, and He will help you.
ReplyDelete