Sunday, February 14, 2010

Lyme 2010: A brief update

Diagnosis remains clinical. Laboratory data should not be over-emphasized. Lyme Western Blots from Igenex, MDL and Clongen are helpful. I prefer Clongen. They provide quality pictures of blot strips which quantitatively compare patient reactivity to controls. C4a is a good marker of infection, better than CD57. Other clues include: reversed vitamin D levels, elevated CRP, low/normal B12 and folic acid levels, and low white blood cell counts. Blood wet mounts reliably show motile round bacteria---presumptive Bartonella species. A large percent of patient have the BBB triad: Borrelia, Bartonella, Babesia.

Primary oral therapy with Doxycycline and Tindamax is excellent. Killing cysts early seems to improve outcomes. Tindamax is clearly better than Flagyl and Albendazole. Biaxin is a second choice in patient's who cannot tolerate Doxy. When Biaxin is used patients seem to do better when a beta lactam is added:Amoxicillin/Ceftin/Omnicel. The benefits of Plaquenil are not clear. Rather than having an anti-cyst effect, it promotes cyst formation. Many antibiotics used for Lyme also have mild effects against Bartonella as well. In patients with neurocognitive deficits, Lyme and Bart are generally both a factor. Bartonella/brain Herxes can be extremely severe. Anti-Bart therapy is such patients needs to be gradually ramped up. Drugs with low anti-Bart activity include: Doxy and Biaxin even though these drugs are thought to be only Lyme drugs. Minocycline is a little more active against Bart. Zithromax orally is a poor Lyme drug and has mild anti-Bart effects. Rifampin is somewhat more active against Bart. Bactrim is quite effective and quinolones are very active: Cipro followed by Levaquin and then Factive. Cipro and especially Factive are also good Lyme drugs. Factive is a fabulous Lyme drug.

Many strains of Babesia appear to be very resistant. I suspect like malaria, these bugs have a propensity for developing resistance. When Mepron, Malarone and Artemesin are relatively ineffective, Larium may be surprisingly effective. I generally like to treat Lyme first. The exception is patients with dramatic Babesia symptoms: drenching sweats. As a rule, patients respond quickly once the sweating stops.

I agree with the Martz approach to IV antibiotics: layering. I start with Rocephin, add Zithromax and then Flagyl. Works very well. Other IV antibiotics may be helpful but responses are more variable. Tigacyl has been disappointing in my practice.

Patient should be treated with IV antibiotics for at least 12 weeks, longer if possible. Gains from IV therapy require ongoing therapy with potent oral antibiotics or the gains will vanish. Factive and Tindamax are superb. Factive is costly. Doxy is a good alternative. A subset of patients only do well when beta lactams are continued. Biaxin and Amoxicillin remains an excellent choice of therapy.

Supplements? vitamin D3, 2000-4000IU seems helpful. Probiotics are critical. A good mix of acidophilus type, 30 billion twice daily and Sacchromyces works well. Supplementation with yogurt is better yet. A balanced diet is helpful: fruits, berries, nuts, fish and a wide variety of vegetables of different colors--broccoli to red peppers. Sugar is always bad. I am not yet sold on other supplements. Transfer factor which is basically colostrum may be helpful. If B12 and folic acid are low-- supplement. These patients are probably nutritionally depleted and should also be given B complex and multivitamins.

The body cannot be sterilized of Lyme bacteria. Intracellular bacteria will always persist.
Unfortunately, many patients require maintenance therapy. I have seen many patients who have been "cured" by other physicians, but complain of incomplete recovery or relapse.

Not all Lyme infected patients required treatment. I only test patients who are symptomatic.
No--it is not sexually transmitted or transmitted by mosquitoes or flies. It may be transmitted via placenta to newborns. This can be very problematic. I treat pregnant Lyme patients with low dose Amoxicillin.

There is no one right way to treat Lyme disease. At times you have to be creative--and, never give up. Individual responses to therapy are impossible to predict.

Patients with autoimmune neuropathy may get much worse with therapy. This is one of the most challenging group of patients. IViG should be considered if possible. Sometimes steroids are needed, despite all the caveats. Antibiotic therapy must be titrated very gingerly.

Welchol works very well in some patients--especially with neurocognitive issues. Long term therapy may be required. It also lowers CRP and inflammation.

Straight IV fluids, normal saline solution may be given to patients on IV antibiotics to flush out toxins? or circulating immune complexes. It may reduce Herxes and make patients feel better.

Politics: no change except Connecticut. Patients must understand that doctors who treat Lyme disease face ridicule from their colleagues and possible censure from medical boards.

53 comments:

glytzhkof said...

Many thanks for such a comprehensive "trench report" as they call it. I suspect my relapsing Lyme may be due to co-infections, maybe Bartonella.

Happy New Year, and best of luck to you and all your patients in the coming year and beyond.

As to the ridicule: "All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident." - Arthur Schopenhauer

sonyafly said...

Wow, a lot of good information. am going to forward this to my LLMD for reference. Thank you.
htt://sonyafly.blogspot.com

MJ said...

Thank God for the few who dare to treat us, shame on the others. Life and history will tell, meanwhile God makes us the miracle of getting some help! Not an easy ride!
Gracias Doctor, this post is extremely informative and helpful!

Mark said...

Are you saying that borrelia can be susceptible to Bactrim, or just bartonella? I have read that at least one of the antibiotics in Bactrim is ineffective against borrelia, and I had thought Bactrim wasn't used to treat Lyme. Thanks your insight, this is one of the best resources for the chronically ill on the net.

bobcat said...

A great blog post. Thank you for posting this!

After dealing with illness for years, I am nodding my head reading this, because I have learned some of these lessons the hard way, through trial and error. You are normally right on the money (from where I'm sitting), and this post is no exception.

Sara said...

Hi Doctor,
I am a lyme patient with a llmd in Rockville. I am on minocycline and azithromycin alternating and now they want me to take Bactrim for bartonella. just curious about your opinion on this regimine. i tested positive for lyme in october and was given doxy by my pmd, but had a bad reaction to that (severe head pressure), then put on cefuroxime with yet another bad reaction, then on amoxicillin and after about two and a half weeks on that had severe abdominal pain. finally saw the llmd who thinks i may have had lyme for a while and am now on this low dose, long term treatment. thank you.

Spinhirne said...

Excellent post. You seem fairly certain Bb is not sexually transmitted. How did you come to this view?

MJ said...

MAX
I'm a patient too and I think one of the biggest misinformation I found was reading that Bactrim was not good for Lyme Disease. My experience showed the opposite; with Bactrim my condition changed for good! Got no swelling, decreased the arthritis pain and got muscular strength. Then Flagil has helped me to the point I DANCED CELEBRATING NEW YEAR; FIRST TIME IN FOUR YEARS!!!!!!!! The only thing I'm sorry is to have learned this so late!
We have to kill the bugs, small and big ones!And then flush them, "clean the house"! Hope it helps you all as it has helped me; but remember that each case is special and requires a good knowledgeable Doctor to advise what's the best for you!

MJ said...

Note: and the Doctor here has found that Tindamax or Tinidazole is even better than Bactrim and Flagil, so, let's get rid of these bacteria and parasites now!

nora said...

sara, are you sure it was not just a herx, the "bad rections" to antibiotics ?

Brooke said...

I have been reading your blog for over a year now, and I applaud your bravery in putting this out for us all to absorb and question. This is a particularly good post, and I am going to print it out for my LLMD, because I'm lobbying to be put on Tindamax (he thinks Plaquenil is a cyst buster). The more we can all share our experiences the more people will be helped through the hell that is Lyme.

Kara said...

Great Post. Am going to print this out and put it in my reference folder. Nicce "this is where we stand" type format Love it!

Only 1 question -- yes, how did you come to the conclusion that Lyme is not sexually transmitted? I think you are, as always, brave to state this.

I'm pretty certain I got Lyme from my husband within 6 months of when we were married. We were living in Hawaii at the time. He grew up in Nebraska and had several many tick bites as a young child. Also knee and hip pain from about 9 years old on up. He thought everyone had it and that it was "normal."

I had "never before seen" subset of symptoms begin after we were married. If you knew my history, I am pretty sure you would agree with my LLMD.

What makes you think that this little spirochete, which can bore into every tissue, organ, cell and hiding place in the body would spare sperm? and saliva? Doesn't quite resonate with me. It's dumb cousin sure knows how to do it, why wouldn't it?

Just food for thought ... Keep up the great posts!

bunny fuzz said...

Hi Doc,
RE: Politics...stay tuned from Virginia. We have a bill patron. It's a start!

Mark said...

With regard to the questions/comments on sexual transmission, please consider that not only must the spirochete be present in body secretions, but it must also be capable of passing into the bloodstream (or such is the conventional "wisdom"). I don't claim to know the answer by any means, but it's clearly as complex a question to answer as wit any other STD: can you get it from ingesting saliva or other body fluids? A related question: can hunters get it from ingesting under-cooked lyme-infected meat? I suspect the answer is generally no, but I see a lot of the usual establishment "experts" purveying this information as usual with no convincing studies to back up their claims, and therefore I'm very leary. It seems the lesser of two evils would be to assume their might be some risk to ingesting spirochetes, unprotected sex, etc. Again, I do not have any answers on this, I just don't have much confidence in any absolutes concerning this unbelievable variable disease.

Mark said...

By the way, in my previous comment I mentioned the establishment holds the seemingly unjustified view that borrelia spirochetes are not communicable between humans under most conceivable circumstances. I say this because I haven't see a study that seeks to provide statistics on transmission rates through various means. I can however find studies with findings that make human transmission seem like a definite possibility. That doesn't mean either conclusion is correct, of course. In any event the conclusion that borreliosis is NOT sexual transmitted coming from the doctor that runs this blog site bears a great deal more significance in my mind than if it had come from any of the CDC puppets, so I just wanted to make sure I wasn't equating the two sources. :) Between CFS/CFIDS/ME, which the CDC has been treating as a fairy tale for years(and has now been shown to most likely be linked to a previously unknown virus - not thanks of course to the CDC) as well as the willful ignorance on Lyme, I really don't trust their conclusions as far as I can throw them. From their website, it's obvious the CDC/NIH views borrelia and co-infections as an epidemic that is somehow only a mild threat, given the absurdly deceptive and dangerously negligent information they purvey.

Kara said...

To Mark -- for me, I know my truth. My life experience speaks louder than any study or doctor's opinion. My LLMD is very experienced and has been treating only Lyme patients for many, many years. He believes it is sexually transmitted -- most easily from male to female. He's seen the clinical evidence to support this over and over and over again.

I am by no means arguing this point. Only sharing what I know is true for me. This doctor's blog is fabulous! He is a great LLMD. I am not discrediting him in any way. I would go to him for treatment in a heartbeat.

We are all still learning and that is what is most important.

Lyme report: Montgomery County, MD said...

I have seen every conceivable combination of "family Lyme." Just the husband-- just the wife-- the wife and kids-- the husband, wife and all the kids--the husband, wife and some of the kids--and so on. You get the idea. What we know is: it is understood that tick attachment is required as enzymes in mammalian blood mix with tick saliva proteins to facillitate transfer of the organism. We know it is hard to find Bb in body fluids--it is a tissue pathogen, at least in humans. This is what science tells us.

As for the woman who claims she got Lyme from her husband from Nebraska--the argument is not convincing. Nebraska is not exactly a hot bed for Lyme. Last time I checked, Lyme has been found in 49/50 states. The only exclusion-- Wyoming. Lyme has been found in Hawaii.

The blog is opion: mine. I might be wrong--and even if I am right-- there may be exceptions to the rule. Most rules have exceptions. What I do see is a lot of fear over concerns of sexual transmission. I beleive the fear is misplaced: sexual partners should not treat Lyme as an STD. Generally, family members get Lyme because they are exposed to the same environment/ticks or through perinatal transmission.

I don't call myself an LLMD because I don't know what that means:(It sounds to official). The IDSA makes reckless statemets. We must be even more careful to not make the same mistake.

ILADS doctors have disagreements: differing beliefs and treatments. As I have said before: it is easy to be an IDSAer--they all read from the same sheet of music. For of us on the other side, the sheets of music are all different.

You should have faith in your doctor--if you are getting better. I think all of us in the healing profession must(try to) be humble(perhaps against our grain) and admit our ignorance regarding so many things.

Just my opinion. One doctor. Of course, that is not to say that many other Lyme treating doctors do not agree with me on this psrticular point.

Sharon said...

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My name is Sharon Jones and I am the assistant editor of Tuberculosis.net. I am contacting you today in hopes of developing a relationship with your website; we have seen your site and think your content is great. Tuberculosis.net is a purely informational site dedicated to the general Public.

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Ramilin said...

Can Yersinia be transferred via tick submission?

btrflynana... said...

Great Post doctor!

Thanks so much for putting it ALL out there for us! I am going to print this for my binder!I so needed a kick in the rear and this was good!

I realize that my diet plays a very big roll in recovery. I so wish there was an easier way to treat these bugs! LOL I am a stress eater...learning the hard way to leave the sugar and carbs ALONE!

I wish there were more doctors out there willing to learn about this disease and treat us instead of turning their heads the other way.

Thank you again for such an informative post! God Bless!

LYMELAURA said...

This is the one thing from all I pray this Doctor is absolutely right: the not transmission through sexual intercourse... it would bring a relief to the ill when having a partner and it could also bring lights about the behavior of this particular bacteria shaped similar to syphilis but, if this finding is true, not similarly transmitted or capable to be passed from human to human. All these would also bring more knowledge and expertise for better prevention and treatments.
In my particular case I pray my husband and child and family and friends and everyone do not get infected!
I cannot make a comment in this site without again thanking the Doctor for his blog and his opinions, no matter if he is wrong or not; at least is someone in the medical field who's sharing his experience and knowledge and most important of all he is sharing his information to do good, to help and reach a bigger group of people -and not charging us!!! LOL!

glytzhkof said...

@LymeMD: I am getting increasingly worried as I read more about Cipro and other fluoroquinolones - the side effects seem extremely serious.

I get the feeling you are a doctor of last resort for many people, and hence may need to use strong medication, but do you recommend Cipro as a last resort or as a "normal" drug to treat Lyme / Bartonella?

My Lyme keeps relapsing, but I am better now than I have been for many years. I am unsure what treatment to try next. I have been thru most recommended drugs: Clarithromycin, Doxycycline, Minocycline, Flagyl, Tindamax, Tetracycline, Plaquenil, and several other drugs.

From what I read it sounds like a combination of Bactrim, Doxycycline and Tindamax could work, but I am not qualified to know what side effects could result. I have taken lots of Doxycycline without serious problems, lots of Flagyl, and some Tindamax without any noticeable effects. I have never taken Bactrim.

glytzhkof said...

@LymeMD: Any comments on these treatment schemes: http://www.lymebook.com/antibiotic-treatment-for-babesia-bartonella-ehrlichia-co-infections

melissamekke said...

I really like your blog; common sense and very informative, with some thoughtfulness and science to your comments.

I was undiagnosed for literally decades and now have been on orals (biaxin and omnicef) for about a year. Latest test shows CDC positive for lyme and also babesia; I'm sure I have bartonella also. Oh, and very little money - probably the biggest obstacle to getting better. I do have a wonderful md who treats lyme and accepts medicare, but she is a self-described newbie. Anything I can bring to the table re info. on treatment will be extremely helpful.

Could you be more specific about dosages/drugs protocols for the babesia and also bartonella? I seem to remember that you said to use low dosages for babesia drugs. I cannot tolerate mephron. Like someone else here, I have read dreadful adverse reactions to quinolines, which is scary. Thank you!

Melissa

ps: what do you think of Dr. Schaller and his assertion that only HH (dr. zhang herbal) will kill Bartonella?

lotus3955 said...

I am having good results with Bactrim on top of azithromycin and doxycycline - a noticible decrease in pain and fatigue since I began it just a week and a half ago.

Super Brain said...

This is such great information, as always. Thank you! It’s a bit discouraging to learn that oral antibiotics are typically needed after IV therapy to maintain gains. It would be interesting to know your thoughts about why.

Colostrum and transfer factor. One of my favorite topics! Transfer factor was originally found in filtered extracts from white blood cells but is also present in colostrum. It’s mostly if not all amino acids and weighs between 3500 and 6000 Da. Colostrum is about 3-5% transfer factor. There are several very potent immune stimulating fractions in colostrum and transfer factor is one. Colostrum itself is very good stuff but most of it doesn’t get into the body, unless you’re a baby. Interestingly, even just a few amino acids in the right order from white blood cell extracts, and presumably colostrum, can have a big impact on immune function. A distinguished professor at Tulane named A. Arthur Gottlieb discovered that Tyr-Gly or Tyr-Gly-Gly from white blood cell extracts could stimulate cell-mediated immunity, namely by increasing NK cell levels/activity and stimulating release of IL2, gamma INF and related cytokines. This sequence happens to be part of the N terminus of enkephalins, involved in dampening pain. Turns out enkephalins have a direct stimulatory effect on NK cells, which could explain how the tiny sequence works. Dr. Gottlieb actually conducted a few well publicized trials using this sequence, which he called IMREG1, in AIDS patients with some success. He was then hassled a bit by the FDA and things slowed down. The history is interesting and worth reading about.

The difference between these very tiny sequences that Dr. Gottlieb studied and the larger peptides, like transfer factor, seems to be the kind of information that gets conveyed. IMREG could stimulate cell-mediated immune activity and were so small they could get absorbed intact. It acted like a cytokine of some sort. Transfer factor seems able to transmit specific information regarding pathogens. That is, it is a bit like an antibody in that it is antigen specific. Transfer factor facilitates a cell-mediated strategy for dealing with infections. For instance, killing infected cells rather than trying to block them from getting into cells as antibodies do. It’s still unclear how much of these longer peptide fractions in colostrum get absorbed intact when taken orally but it is clear they have a big impact on things like NK cell activity and other markers that indicate the immune system is fired up. A search of PubMed.gov for transfer factor (or “colostrinin” or “proline rich polypeptides”, same stuff) turns up lots of great reading material.

There haven’t been any published studies on transfer factor for chronic Lyme. However, I know several people who have benefited , including two loved ones. They pack a whallop and can be uncomfortable for people with immune systems already tweaked in the Th1 direction, as is thought to happen in some chronic Lyme patients. At the same time, low NK cell levels and high C3a and C4a from the complement cascade do not seem consistent with the idea that chronic Lyme is a Th1 condition. For those with low NK cell levels, they should go up. Targeted products are probably superior as they contain transfer factor for antigens associated with specific, targeted pathogens. For instance, one is made from the colostrum of cows after exposure to Bb, babesia, ehrlichia, chlamydia pneumonia, bartonella and a few other nasties. Not sure about specific strains. It’s not clear how much of these things get absorbed or if the bulk of the effects stem from smaller fragments of the molecules, like Gottlieb’s IMREG, but there are reasons to think they should help the body fight chronic intracellular infections, whether from viruses or bacteria. Perhaps they could prop the body up enough that the odds or a relapse following IV abx would be reduced.

Lyme report: Montgomery County, MD said...

There are essentially no studies on chronic Lyme disease: it does not exist. Immune responses to Bb go in every direction. The emphasis on Th1 and Th2 is overplayed. I have one patient who reports that TF is helpful. Everything I report is anecdotal and not based on "evidence based" medicine. I report my clinical experiences-- the lost "art" of medicine. Pubmed is replete with basic science, mostly from animal models, which could/should apply to medical practice as it relates to such matters. These articles are discarded by medical boards whose learned members wouldn't know a cytokine from a hole in the ground.

saheeb21 said...

Very interesting post re Tindamax.I just finished a course of Biaxin and Flagyl. Although I am probably about 80% better, I think I still have more Bart-like symptoms. I tried Levaquin without any real improvement. Would it be feasible or advisable to take Tindamax with Cipro?

Beth said...

My doctor is using this protocal:

http://www.allergyresearchgroup.com/Mar-2009-Focus-Newsletter-Biofilms-and-Fibrinolytic-Enzymes-sp-90.html

ladyofgoatisland said...

Hello~~my comment is in response to your last two posts concerning Alzheimers and a general Lyme Update. I hope I can keep this concise and not do my usual ramble...
I was bitten in 1989 and finally diagnosed with Lyme via positive serology in 1992. I saw Alan Steere at that time and was even involved in an NIH study that ended badly around ... sorry, I've forgotten...1998 or 99 at Tufts. (had the placebo at that trial) I had two courses of IV Rocephin and have been on oral abx of one sort or another ever since with the occaisional time off to give myself a break: I can tell when I become 'toxic'-- however, after being off the abx for a month or so, every symptom is back. The neurocognitive stuff is worse, to me, than all the arthritis and fatigue that I've had.My feet are seriously involved and even with custom, goofy, orthotic shoes, I spend most of my traveling with a cane or scooter.
The physical stuff is bad enough, but to have my brain, that is, my 'thinking' and organizational skills, become so compromised, is the worst. I've gone from a relatively high functioning writer, mom, volunteer, etc etc, to having days when the brainfog makes me 'stoopid' and I just sit and cry quietly under a pile of blankets. A fast drop in barometric pressure knocks me out in every way. My husband of 23 years left (a blessing, as it happens) and I am now living on SSI...$674 monthly. Lyme has clearly been devastating in my life.
I also have an autistic 28 year old son who lives with me after several attempts at other, more independent living arrangements. So my days are spent keeping HIS quality of life high, as best I can.
(Oh dear, I AM rambling, aren't I?)
My concern now is Alzheimers. My cognitive involvement has not diminished; it is the physical part of Lyme that responds the best to abx. My memory is clearly worsening, and in a different way...it somehow 'feels' different than a few years ago--much worse word retrieval, not recognizing items that I'm looking for, even when I find them...other things I can't 'quite' describe. My sleep is unpredictable, and my mood is not the eventempered 'me' everyone is used to: just a tad crabbier, not as happy. Of course, given my history, this may well be simply a reaction to the events around me.
Counseling is a neverending process.
Now, if I'm reading your posts correctly, you concur with the genetic componant of Lyme. Do I have that? You also imply that Alzheimers has a similar genetic link. Are these genes related? (I have little knowledge of genetics.) Two years ago my mother became 'different' and over the course of only one year, was quite progressed with Alzheimers. We are astounded at what appeared to be the rapid onset, but now I am understanding just how much time there is that Alzheimers is undetectible from normal aging. I've learned recently that some symptoms can be seen or at least suspected, 5 or 10 years before the obvious unmistakeable signs arrive. SPECT and mri's can identify global vs. spotty brain involvement, if I understand this correctly, some years ahead of time, not to mention the genetic testing available these days. My question to you (finally~!) is: what is the likelihood that the neuro symptoms that don't seem to resolve with abx are really Alzheimer's? Do I have a genetic double whammy?
I am ramping up my medical care: new doctor, new neurologist, both with Alzheimer's interest, not to mention researching on my own everything I can, while keeping my subjectivity. When I came across your web posting here, it seemed a logical place to ask this question. Any thoughts you have are appreciated! Thank you for reading all of this (if you are still with me here!).
My best wishes to everyone here dealing with all the Lyme symptoms--> be well!

Narnia707 said...

PLEASE continue blogging. You are a voice of sanity in the crazy world of Lyme. Thank you

JoAnn said...

"Patients with autoimmune neuropathy may get much worse with therapy."

That's me, unfortunately. I'm only a few weeks into my first round of abx (doxy) and I feel like I've been run over by a truck. My vertigo, fatigue, and blurry vision/double vision are so much worse.....is this just to be expected? Is there any way to ameliorate this??

I have multiple autoimmune diseases plus fibromyalgia....just formally dx with Lyme in January 2010.

MJ said...

HEY "ladyofgoatisland" you are not alone, we are here with you!
write when ever you can and get treatment, you can recover!
God bless you!

Gabriella said...

Do you accept new patients? I just started antibiotic treatment for Lyme, but would like to have your opinion on

1. do I really have Lyme or is it something else ?(WB was positive for 41 39 58 IGG and 41, 23 on IGM, do have many fitting symptoms but don't remember a bite/rash, also have positive ANA, Rheumatoid factor, SS-A, SS-B, normal C3, low C4, low Vitamin D and was diagnosed with hypothyroidism about 9 months ago...si I am pretty overwhelmed right now. Reading your blog and other sources, if I have Lyme, I had it for a while and I am not sure that the current antibiotic treatment will do the trick ( Minocycline 100mg 2/day, introduce Azythromycin 2 weeks later 250mg/3 times/week... doesn't seem to address cyst form...

2. Also have a 12 year old who has an increasing number of symptoms that could fit, have not done testing yet...

Would appreciate an opportunity for a consult (live in NOVA, just moved here in Spetember). Thanks for all the info on the blog!

Andrew said...

How do you differentiate between Chronic Lyme and CFS and other related issues? Does TGF Beta have any relevance in Lyme diagnosis?

saheeb21 said...

Treatment update from previous comment/question I posted: I did 2 three-month courses of Tindamax and cipro. This combo seemed excellent for treatment of LD and probably Bart. My feet stopped hurting and cognitive problems and fatigue improved dramatically. Side effects were minimal or at least not any worse than the other antibiotic combos I had been on over the previous 2 years.

Tindamax/cipro seemed to finally knock out my symptoms. I have been off abx for 8 months now and feel like my old self. Keeping my fingers crossed for now.

Pearl said...
This comment has been removed by the author.
Pearl said...

In your paragraph on supplements, you don't mention magnesium. I discovered it on my own 2-3 months before my diagnosis. I found that 250mg 2x/day significantly reduced my shortness of breath and muscle twitching in my legs. So do epsom salt baths and alka seltzer gold.

I haven't seen a mention of Provigil (Rx) for fatigue. When I started taking it, I was thrilled to see the almost immediate improvement on my brain fog, headache, and fatigue. I had to take a blood pressure med to counteract its effect on my BP and heart rate (which was already elevated thanks to Lyme) until my system acclimated to the Provigil.

There is no history of food intolerances in me or my family, but I went gluten free and mostly dairy free on the recommendation of another Lymie. I was surprised, not only how much my intestinal problems cleared up, but also in helping with brain fog and fatigue.

I am only 3 weeks into initial oral abx (my LLMD does 3 mo. before starting IV) so I still have very low stamina, but at least I can think so much more clearly now.

I have Neuroborrelliosis and Bartonella, estimated 6 years to diagnosis.

jim smith said...

These articles are discarded by medical boards whose learned members wouldn't know a cytokine from a hole in the ground.
Transmission Shop Fort Lauderdale

Sara said...

Hi Melissa,

I am in the same boat, concerning finances and the resulting limitations on wellness. I am wondering if there is a way I could contact you privately to discuss your treating physician?

Thanks,
Sara

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