"LLMD" and long term AB therapy for "Late Persistent Lymes"...Does anyone get better

General
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This post is not meant to discourage anyone seeking help from an LLMD, I’m sharing my current experience and decision to stop going.

I’ve listed all my symptoms at the bottom. I’ve had aches and pains for many years, tinnitus started about 3 years ago and then periods of vertigo followed. ENT diagnosed Menniers Syndrome 2.5 years ago but said there is no treatment. I have lived with it and dealt with it all by relying on a steady diet of pain killers, Initially for a back issue which is now ok, but my knees became unbearable at times.

I have worked hard and played hard my entire life, wrecked motorcycles and involved in the trades, so the body has been used and could certainly explain pains and aches at almost 50. Most of these symptoms have been going on a while but the cognitive issues bother me and it has progressed somewhat over the past few years as well as constant but fluctuating tinnitus. Last episode of vertigo about 2.5 months ago.

I went to a LLMD about six weeks ago at a friends suggestion. The Dr. made the diagnosis of Lymes on the spot and started pumping me with two different AB’s, B12 and magnesium concoctions. Said he noticed minor palsy symptoms and that Lymes is causing my joint pain. Prescribed Z pack antibiotics 500mg a day and vitamins and supplements as well as probiotics. Repeat the IM injections every two weeks.

He draw a lot of blood and sent it to Quest, if anyone is interested in the results, I will share them, I was told Lyme’s, Babesia, EB virus and HSV. The HSV I knew about but was not taking any type of maintenance for it at the time. My last visit they now have mycoplasma pneumoniae listed and we have lost the Babessia diagnosis. Now the good DR says we need to send out to igenex to confirm Lyme’s because it’s not confirmed through Quest and that I do have “some pretty nasty stuff going on”

I’ve been there three times now, the forth visit is probably not going to happen, I won’t get the results from the Igenex test if I don’t go back but I’ve come to believe that the test is almost worthless for my situation. I have been nearly floored since he started this protocol and have never felt worse, physically or mentally. Nearly every symptom has been dramatically worse with brief periods of feeling ok. For days after the IM treatment, I can taste and smell the meds.

I’ve have since been researching and have been hard pressed to find anyone who this has helped with “Late Stage Lyme’s”, if that’s what is even going on with me. I’m no scientist either but the LLMD’s appear to be using pseudoscience and anecdotal evidence as their basis for AB “therapy” and especially regarding late stage Lyme’s and co infections.

I’m not thrilled with the relationship between many LLMD’s, Igenex and ILAD, it appears very convenient and almost cult like. The conflicts of interest are not hard to see when you do some research. I will share what I have learned but not here, if you’re interested just ask. The top dog, internationally renowned LLMD has some of the worst patient reviews.

Also, I personally know someone who is with a different LLMD for nearly two years on AB’s, both IV and oral and is just as bad today, he is considering stopping the AB’s. His LLMD is covered by insurance, mine is not.

So what now? I guess I’ll go to my family Dr. and share the blood work, see what he says but I’m thinking he says stop taking all AB’s and injections. Stay on pain meds but cut back, which I have reduced by half but have been nearly unable to work since the first LLMD treatments six weeks ago. All comments and criticism are welcome, again this is a personal decision based on my belief and research. Your situation is likely much different than mine.

Symptoms:
Arthritis type pain, knees, hands, etc at times. (30 years, progressive)
Tinnitus, significant hearing loss in left ear and episodes of vertigo, this can be the worse symptom when it happens. (3 years)
Loss of smell sensitivity (3 years)
Memory and cognitive function fluctuates. Moody. (Progressive, worse since treatment)
Overall body aches and pains, moves around, all over at times. (Fluctuates,persistent, many years)
Tingling fingers at times and slight numbness.
Get chills easily or minor sweats at times.
Stamina is down, at times very low and awful since starting this treatment.

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I'm glad you're here, AJ. You may be interestedto read the Lyme and PTLDS tab at the top of the page.

One big warning sign is when the practitioner tells you that worsening symptoms are a sign of "getting better." That's a good indicator that it's time to move on.

Wishing you relief from your symptoms soon.

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Hi AJ,

Many of my symptoms got worse for a few weeks when I began treatment - and once I started the antibiotic therapy, several more symptoms kept popping up (for approx. 8 - 10 months). When I first sought out treatment, my initial diagnosis was thyroid & adrenal related, so I started adjusting my thyroid meds and making significant changes to my diet (no processed food, only whole grains, no corn syrup/fructose in food, very little sugar, no meat fed with corn/soy or given hormones/ antibiotics, no food made with GMO food, etc..). After a year, I was still so exhausted, I could barely do my job (which was a typical desk-job... high stress, but very little physical activity), some of the thyroid & adrenal symptoms were getting better, but the Endocrinologist thought I should be doing better, and sent me to the dr who eventually diagnosed me with Late Stage Lyme. That process took approx. 6 months of tests and ruling things out (I didn't want to believe that the problem could be Lyme, because I didn't believe that it was a "real" disease, you see, I've spent much of my career working for health insurance companies, and we didn't believe in Lyme.... just like we didn't believe in Chronic Fatigue Syndrome, or Fibromyalgia, and many other illnesses years ago) - during this time, we kept cleaning up my diet (now I follow the AIP Paleo diet, but am thinking about moving to either a Ketogenic or GAPS diet because of the neuro-lyme symptoms I can't seem to shake). Finally, the dr convinced me that I truly had late stage Lyme and I've been on a variety of antibiotics and malaria meds (cycling through the meds seems to help with the Lyme & coinfections). I'm doing EVERYTHING in my power to avoid the IV antibiotics because I simply can't afford them, and even it I took out a home equity loan to pay for them, the dr won't give me more than a 50/50 chance for a successful outcome - so instead, I am extremely strict with my diet, take a bucketful of supplements, do my best to get regular (and LOTS) sleep, and stay on oral antibiotics, most likely, forever in an effort to manage the illness.

So.... to answer your question... I don't know that anyone ever "beat's Lyme", but I do believe that many of us can go into remission. I know for sure that I've improved SIGNIFICANTLY! In 2012, I couldn't walk the length of a football field, but just this month, I spent a day at a national park and walked 2 miles (not all at once, but within a 4 hour period), and after that I was able to spend the rest of the day socializing with other people and stayed up until 10 that night. Most people would consider me sedentary - but anyone with chronic Lyme knows just how much of an improvement that really is! Every time I back off on the meds and/or get loose with my diet or sleep - the symptoms come back - you definitely need to stay on top of EVERY aspect of your life if you want to heal/ stay in remission, but I believe that it's possible.

My current symptoms:

I have terrible Tinnitus too - and the docs don't even seem to care, but it drives me crazy! I wish there was some way to fix it.

Generally have swollen lymph nodes

Thyroid/ adrenal fatigue (tests show improvement, still need to tweak)

Seizures (neurolyme) - finally under control, but they go crazy when we use the malaria meds

Brain Fog, Memory Loss, Concentration Problems (use ADHD meds)

Severe Anxiety and Depression (require 3 different meds and see a Counselor)

Sweating, primarily on scalp, face, neck, chest , groin & back (sometimes so bad that my clothes & hair get wet - oftentimes my skin is cold, but I still sweat) (Stay with antibiotics, take probiotics, take de-tox supplements)

Digestive problems (ulcerative colitis) (manage with strict AIP Paleo diet and probiotic & enzyme supplements)

Pain in all joints (worse in joints which have been injured or operated on) (manage with AIP Paleo diet and only take NSAID meds when pain is especially bad)

Severe headaches (pain scale: 8, feels like an ice pick is stabbing into my brain and/or feels like cherry bombs are exploding in my brain, frequency: 3-5 times a week) (manage with antibiotics, supplements and AIP Paleo diet, also take Topamax and only take NSAID meds when pain is especially bad)

I hope my experience gives you some perspective. My endurance/stamina was terrible 2 years ago, and this summer, I'm thinking about trying to "train" so I can get ready to walk (yes, JUST WALK) in a 5K this Halloween (goal: participate in the event and not finish last). Last summer - something that aggressive wouldn't have on my radar, and I'm not 100% sure that it can happen this year, but I'm going to give it a shot (heat really makes my symptoms worse, so training over the course of the summer could really put me in a tailspin).

Feel better and get some sleep! :)

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Okay, symptoms should never get worse upon starting treatment of any kind. Practitioners, who use this line to justify their treatments are flat out quacks. The fact that there are no evidence based studies to back up this method of treatment with long term, strong antibiotic use should speak volumes to potential and current patients. It should scream a loud warning. In fact, a lot of the symptoms that patients experience when on these antibiotic regimens are consistent with adverse affects of taking antibiotics and are not related at all to the treatment working.

The harsh reality is that there really is no effective treatment for chronic Lyme at this point in time. It is so frustrating to hear that, but it is the very honest truth. That is the reason that most doctors don't prescribe for it, and that most insurance won't pay for it. We can all be reasonably assured and bet the farm that if there is any money to be made on a medical treatment for Lyme; doctors, pharmaceutical companies, pharmacies, therapists, et al will be ready and willing to provide it.

If one of your main symptoms is pain, then a good pain management doc can be a godsend. Don't be afraid of pain management simply because of the stigma attached to it. A good PM doc prescribes more than just meds, and can make you feel so much better.

I'm so glad you joined us and hope you will stick around!

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It might be useful for you to learn about Jarisch-Herxheimer reaction which is typical in antibiotic treatment of tick borne diseases. Basically as you kill the bacteria the die off releases toxins and you get sicker.

Having gone through prolonged antibiotic treatment, I went through this process many times, each time less intense. In the end I recovered. I was not functioning at all by the time I got treatment, and now I can work 3-4 hours a day, sometimes full 8 hour days.

Before Lyme I was a work horse, dawn to past dusk. I still have that personality, just not the stamina!

http://en.wikipedia.org/wiki/Jarisch–Herxheimer_reaction

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Pilgrim, I am glad you are feeling better. I think you and AJ both should read this discussion: http://forum.lymediseasesupportnetwork.org/forum/topics/herxing

Many lyme patients are told that herxing is an indication that bacteria are being killed. However, it is more consistent with symptoms from antibiotic overuse, which can lead to permanent damage.

Pilgrim said:

It might be useful for you to learn about Jarisch-Herxheimer reaction which is typical in antibiotic treatment of tick borne diseases. Basically as you kill the bacteria the die off releases toxins and you get sicker.

Having gone through prolonged antibiotic treatment, I went through this process many times, each time less intense. In the end I recovered. I was not functioning at all by the time I got treatment, and now I can work 3-4 hours a day, sometimes full 8 hour days.

Before Lyme I was a work horse, dawn to past dusk. I still have that personality, just not the stamina!

http://en.wikipedia.org/wiki/Jarisch–Herxheimer_reaction

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I can not believe the herx thing still persists. It is a 100% sure sign you are dealing with a certifiable quack who either flunked or never took microbiology 101.

The Herxheimer Reaction comes from dying endotoxins. There is a problem however in that endotoxins are only produced by gram negative bacteria. Lyme is not only NOT gram negative, its incapable of producing endotoxins. Now occasionally one of these quacks take the next step which is even more evidence of their quackery - the ever famous co-infections, two of which just about every human the world carry ( there is a link above)

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Thank you for the links, but I have already done my research on this supposed reaction. It is medical quackery which is why I stand by my original statement: your symptoms should never get worse upon starting treatment of any kind. The statement, "Oh you feel worse? That's how we know the treatment is working" should never pass the lips of a qualified practitioner.

Pilgrim said:

It might be useful for you to learn about Jarisch-Herxheimer reaction which is typical in antibiotic treatment of tick borne diseases. Basically as you kill the bacteria the die off releases toxins and you get sicker.

Having gone through prolonged antibiotic treatment, I went through this process many times, each time less intense. In the end I recovered. I was not functioning at all by the time I got treatment, and now I can work 3-4 hours a day, sometimes full 8 hour days.

Before Lyme I was a work horse, dawn to past dusk. I still have that personality, just not the stamina!

http://en.wikipedia.org/wiki/Jarisch–Herxheimer_reaction

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Getting back to the original post. Yes some get better in fact 80% do with out further intervention. There are some consequences to lyme treatment with the antibiotic protocol. C-diff and antibioltic caused colitis. There are a number of former memberswho have been completely disabled (including at least one who is deceased) from "treatment." They simply couldn't stop. Study after study has shown with disease and syndromes that require differential diagnoses, the placebo effect is close to 50%.

Lyme has developed political steam in spite of the fact that it is a very well understood condition, with close parallels to another old and well understood disease, syphilis, which is caused by a related ... bacterium.

The CDC’s online information on “post-treatment Lyme disease syndrome” says tthat all patients need personalized care That doesn't endorse bad care or treatment outside of evidence based parameter which we unapologetically follow here.

A nonlyme doctor may want to treat you as if you have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor doesn't believe you or is saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available.

Antibiotics are a two edge sword They do not cure anything they only create an environment where your immune system can do the work. This work often extends beyond the time of the antibiotic dosing. When you have a disease such as Lyme (and most chronic lyme patients that's questionable) that attacks the immune system that becomes more difficult.

Hopefully your doctor will refer you to a specialist (usually a rheumatologist) who is experienced in dealing with immune system disorders so you can get some relief.

BTW I do have a bit of an agenda One of my best friends and a colleague of 30 years or so was a guy by the name of Willy Burgdorfer......