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Posted 2/3/2015 9:16 PM (GMT 0)
Hello everyone, My name is Dave, I'm 29 years old who was recently diagnosed with lymes disease by my LLMD.  I have been an athlete my entire life, and until the last few years, specifically the last year, have not been able to exercise really at all, which has caused depression, anxiety, etc.  Within the last year or so, I started to develop the following symptoms, which got worse within the last 6 months (joint pain in both shoulders, knee, burning in both feet, chronic plantar fascitis, back pain, night sweats, headaches, increased anxiety- possibly due from stress but I have had anxiety my entire life as I was born with Tourette's Syndrome, GI issues such as candida and possibly leaky gut- I have had an inflammed gut most of my life, my joints throb every morning when waking up, extreme fatigue and restlessness, inability to focus for a long period of time, trouble sleeping and staying asleep- waking up multiple times a night.  My LLMD diagnosed me with Lymes Disease and put me in Acticlate, which I have not yet received in the mail.  He also mentioned that IGenex misdiagnosed me, since the IGM results for band 83-93 show positive (he explained that this band is specific to Lymes since it represents the DNA of the lymes bacteria.  He also mentioned that I have had lymes for possibly a while, it could be months or up to several years, since my IGG showed up negative but my IGM showed positive.  Am I understanding this correctly?  Is the IGG antibody produced first by the body, and as Lymes becomes more chronic, it has a weaker response to the Western Blot?  Can anyone help me interpret my IGenex results below?  Does it look like I have Lymes, or could it be another chronic infection? Thanks for all your help! Dave IGENEX IGM RESULT CDC/NYS RESULT- NEGATIVE CDC/NYS RESULT NEGATIVE 18 kDa + **23-25 kDa - 28 kDa  -             30 kDa  +         **31 kDa   -         ** 34 kDa  IND         ** 39 kDa  IND         ** 41 kDa  ++             45 kDa  -             58 kDa  -             66 kDa  -         ** 83-93  kDA + IGENEX IGG RESULT CDC/NYS RESULT- NEGATIVE CDC/NYS RESULT NEGATIVE   18 kDa ++ **23-25 kDa IND 28 kDa  -             30 kDa  -         **31 kDa   IND         ** 34 kDa  IND         ** 39 kDa  IND         ** 41 kDa  +++             45 kDa  +             58 kDa  ++             66 kDa  -         ** 83-93  kDA -    
Posted 2/3/2015 9:28 PM (GMT 0)
Hi DaveN - You certainly have enough of a response on the WB to indicate lyme disease.
I would start treating as soon as possible - as you already have a LLMD - is he ILADS trained?

I am not familiar with Acticlate - maybe someone else from the forum can comment on that.

If you haven't already done so, please take a look at the thread titled "New to Lyme?..Start Here" at the top of the page. It is full of good information.

Please keep reading, posting, and asking questions. We're here to help you!
Posted 2/3/2015 9:48 PM (GMT 0)
Hi Girlie,

Thanks for your quick response!  I am not sure if he is an ILADS trained physician, I called his office to find out, no answer, so I will call later.  Acticlate is the brand name for doxycycline I believe.  I am going to start treatment as soon as I receive the medication.  I am also going to be taking herbal remedies for lyme as well as detoxing via different methods (sauna, mineral baths, etc). 

I look forward to being able to become a member of this community and grow my knowledge of this disease so I can get better as fast as possible :)

Posted 2/3/2015 10:00 PM (GMT 0)
Yes, good idea - start the doxy right away. How long is your prescription for?

Usually the IgM means an active infection.

What herbal remedies are you going to be taking for lyme?
Posted 2/3/2015 10:05 PM (GMT 0)
Hi Dave!!
Welcome to our community!! I'm glad you found us!

As Girlie said, welcome to the club that no one wants to belong to! Your tests show more than enough response to be confident in your diagnosis.

As you said, the longer a person has Lyme, the less likely they are to test positive for it. This is due to many factors, one of which is because Lyme (especially if combined with Bartonella) inhibits the immune system and the tests are only looking for an immune response. Another reason why the testing is faulty is because out of the over 100 strains of Lyme disease known to cause human infections, only 4 or 5 are being tested for.

It's very important to be sure that you are using a LLMD that has been trained by ILADS as the ID docs that are self-proclaiming themselves as LLMD's still only work by IDSA standards which believe that Lyme is hard to catch and easy to treat, leaving many searching for more answers when their symptoms return once treatments are stopped. It's best to avoid that situation all together.

One hint that they may not be ILADS trained is by the dose of Doxy that you are supposed to take. It should be 400 - 600 mgs a day - anything less will only keep the bacteria from replicating, not kill any off.

IgM antibodies are produced during a period of time when the body is actively fighting it, and IgG antibodies are produced during later stages of the infection. It's actually quite common to have someone show antibodies for both at the same time.

Oh, and by the way, your neither one of your results - IgM or IgG - are really negative. The IND means indeterminate - a response was registered, but not quite enough for a "fully positive" response - quite typical of Lyme in a person.

If you haven't yet, please do take the time to read through our "New to Lyme? Start here!" thread that sits at the top of the forum. It's packed full of important information, detoxing suggestions and even information on probiotics -which you will need to be taking as well.

I would also suggest that you start on milk thistle to help protect your liver from all of the toxins and abx (antibiotics) that you will be pushing through it. Some people, like me, that are allergic to rag weed can't take milk thistle, but most can.

Also you should be aware that it's rare for Lyme to be the only thing passed at the time of the tick bite. Most often there are other infections and/or viruses that are passed as well.

Keep asking questions!! Knowledge is power with these infections!!
Posted 2/4/2015 3:32 AM (GMT 0)
Dave,
I used this to understand my test results.

http://lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html

She does a good job of explaining a lot of controversy with tests being deemed negative and more.
Posted 2/4/2015 9:34 PM (GMT 0)
Thanks for the response everyone! Is it 100% necessary to use an ILADS trained LLMD? My LLMD has been treating lymes for over 25 years and comes very highly recommended for a clinician who is extremely picky as to who he recommends and who he uses in his network of providers. I did forget to mention one kind of big piece of the puzzle; I did test positive for Bartonella, which he mentioned is a very common co-infection with lyme. In my research of bartonella, it did show some results where bartonella has been found in people who are HIV positive. Has anyone else read of this? Or is this very rare circumstances, and the majority of bartonella-infected individuals are from tick-born illnesses such as lyme.

I will definitely start looking into milk thistle. Luckily for me, my mom is a health coach who practices chinese medicine, herbal treatments and homeopathy/naturopathy; and I have a passion for holistic nutrition and food, so it is something I am pretty well versed in; but still SO much more to learn.

My LLMD is treating both my lyme and bartonella with Acticlate. I will come back to him in one month for a follow up and to start on more aggressive treatment.
Posted 2/5/2015 1:18 AM (GMT 0)
You would have to be engaging in risky behavior to be positive with HIV.
Posted 2/5/2015 5:27 AM (GMT 0)
"In my research of bartonella, it did show some results where bartonella has been found in people who are HIV positive. Has anyone else read of this?"

Yes, Buhner mentions this in one of his books. But it has been also found in the homeless and drug addicts. It is also found in blood for transfusions. Kind of scary if you ask me!

Where did you read it? It sounds like you are in good hands, so maybe you don't need an Ilads LLMD. I don't know what Acticlate is--maybe others can help.
Posted 2/5/2015 6:54 AM (GMT 0)

Simela1 said...
"In my research of bartonella, it did show some results where bartonella has been found in people who are HIV positive. Has anyone else read of this?"

Yes, Buhner mentions this in one of his books. But it has been also found in the homeless and drug addicts. It is also found in blood for transfusions. Kind of scary if you ask me!

Where did you read it? It sounds like you are in good hands, so maybe you don't need an Ilads LLMD. I don't know what Acticlate is--maybe others can help.


He would have alot more infections than just tickborne if he is untreated for hiv.
Posted 2/5/2015 5:47 PM (GMT 0)
Lymedisease1, we assume that people DON"T have HIV instead here, especially when their Lyme tests and Bartonella tests are coming back positive.

Dave no, it's not 100% necessary to use a ILADS trained doc - but it can sure help if you run into any issues during your treatments! Is your doc willing to work with an ILADS trained doc? That would definitely make things easier for you.

I healed using a non- LLMD, but she was open to a lot of information that I provided, which is another issue, you will have to provide information for your doc to help them treat you so that you will heal.

Unfortunately, there are many self-proclaimed doc's out there that say they have treated all manner of Lyme patients, but in truth, they have never healed them. Many end up here or on other Lyme forums because they are left with chronic Lyme once inadequate treatments are stopped and the treating doc declares that the patient is now left with "Post Lyme Disease Syndrome", which is still an active Lyme infection since the person will still have lots of symptoms and require treatment during part of each year, or is just left on their own to deal with it all.

Find out by what standards your doc treats. If they follow IDSA standards - run!! Don't walk out of that office! They helped you get started, so thank them on your way out, but don't stay.

If they don't treat by IDSA standard, but it sounds more like these treatment standards put out by ILADS, then you may have a really good doc: www.ilads.org/lyme/treatment-guideline.php

Believe me, it's worth the time and effort to find out!
Posted 2/6/2015 4:23 PM (GMT 0)
Hi Traveler, I did check with my LLMD, and he is in fact ILADS trained :). So that's great news which I'm assuming he follows the ILADS treatment standards, correct? I am going to be taking an herbal regiment in addition to my antibiotics of Acticlate (I believe it is the brand name of doxy). My mom and I are going to her herbalist teacher who teaches as well as practices chinese herbal medicine, and is apparently very good. My understanding of herbal treatments, specially with chinese herbal remedies is they do not treat the diseaes/condition, rather they treat the symptoms, which when paired with antibiotics, help create a more holistic treatment protocol. I am also going to be researching on detoxing my body (currently on an anti-candida diet) as well as taking saunas, mineral baths, etc.

Can anyone here recommend any good herabl supplements or regiments they've used to help treat their lymes? If you have also had Bart, please let me know what helped with that. I know Lyme and each co-infection affects each person uniquely so there is not one "equation" you can apply to each person, but if anyone can provide some good rules of thumb or general herbs, remedies they found to be particularly helpful, I would really appreciate it!
Posted 2/6/2015 4:25 PM (GMT 0)
Dave, if you poke around in the New to Lyme thread and use the search function, you can find a lot of good old information! Also, it's Lyme, not Lymes. :) Glad you have a ILADS trained doctor.
Posted 2/6/2015 4:53 PM (GMT 0)
Good to hear about your doc!! Yes, if they were ILADS trained, you can expect them to follow ILADS recommendations for treatments, although we always check with each other here as each doc still has their own ideas of what should be done. Some idea that they have don't make any sense, while others may be brilliant.

Actually, I treated with a Traditional Chinese Medicine Practitioner the first time around and used no abx at all and healed very quickly. So while you can usually combine the herbs and abx- always check with your TCM doc though! - it's not really necessary if the right herbs are used.

I used the Chronic Tonic to heal my Lyme infection: www.healingwell.com/community/default.aspx?f=30&m=3244272

After 3 months of using only the Chronic Tonic, I added in Houttuynia tea to my routines to treat Bartonella: www.healingwell.com/community/default.aspx?f=30&m=2887463

I treated those two infections alone for 12 months for a 40+ yr infection and was healed. It took a lot of 'supportive care', with herbs and acupuncture - and of course tons of detoxing - but it all worked!!

You can read a more overall description of my healing the first time around (I got reinfected 2 years after healing, but may now be healed from that as well) in the link in the signature line below this post.

Please do read through the "New to Lyme?" thread if you haven't yet as there is some really good detoxing information that you will need, important information on probiotics and more.
Posted 2/9/2015 3:26 PM (GMT 0)
I spoke to my LLMD; he put me on Acticlate(doxy hyclate), which i split the tablet (the tablet comes in three sections, I take two sections of the three twice a day, so it comes out to a little less than 300 mg I'm assuming). He mentioned he wanted me on a general abx for the first month just to acclimate my body and to start slow, and then we will start more aggressive treatment after the first month. Has anyone hear had any experience with Acticlate? If not, can you tell me which abx generally worked for you?

Also, can anyone recommend any good books on treating lymes homeopathically or through Traditional Chinese Medicine? I'm seeing a good TCM doctor in the city next weekend, so I'm hoping to start on some good herbal remedies along with my abx. I also read some good info on detoxing the body while on treatment to prevent ant anti-infective effects and to help rid the body of all that bad stuff. Can anyone talk about what detox treatments worked well for them?

Lastly- sorry for all the questions today! The biggest part of my depression is that I cannot workout, and have not been able to since 2012, which for me is crushing. I had shoulder surgery in 2013 and was either did not get rehabbed properly or perhaps a combination of my body being systemically inflammed along with bad rehab caused me to relapse, injury wise. I know some people are able to workout with lyme and others are not. In general, are those with lyme and possible co-infections able to workout like they are used to, or is working out only able to accomplished after being healed?
Posted 2/9/2015 7:52 PM (GMT 0)
Dave! Hang in there! I know exactly how you feel. I'm a recent diagnosis as well. I'm a couple months ahead of you, but I know how badly you want to get back to working out. I've found that I still cannot run long distance because of the plantar fasciitis, but I'm finding that I am tolerating some activities better than I used to so I am really hopeful about the trajectory. I've picked back up with short sessions of mountain biking and indoor soccer and the joint pain is holding steady (but not getting worse, which was my fear, as it always seemed to increase upon physical exertion) and I'm not totally wiped out so my stamina is increasing. I'm starting to notice improvement in my neck stiffness and muscle twitching too. The gut stuff is worse, but as I am ramping up antibiotics I sort expected that.

You need to get sleep too. It's all a bit cyclical (the less you sleep, the worse you feel, the less you sleep). Without sleep I'm not convinced you can heal as quickly as you would otherwise. Have your LLMD address that. When I addressed the sleep issues my anxiety levels (I just had nighttime anxiety) came down quite a bit.

Stay the course!
Posted 2/9/2015 8:30 PM (GMT 0)
Hey Berean!
Thanks for the great words of wisdom and inspiration! It's really great to hear someone else in my shoes having the same craziness about wanting to work out. I too have plantar fascitis, for well over a year now. Do you contribute yours to lyme, or to biomechanical/musculoskeletal factors? I have not been able to work out at all, since I started feeling sick. I can do stationary bike 2-3 times a ween and ab work, that's it; but better that, than nothing. I definitely need more sleep, that is one of my biggest issues right now, that and constant worry/stress about how I look and feel since not being able to workout.

I will definitely address this with my LLMD. You mentioned your gut is getting worse since antibiotics started; luckily the gut is a bit of a specialty for me. Have you started taking any good probiotics/L-Glutamine, bone broth for your stomach? If not, I would start with a good probiotic, taken 2 hours after your antibiotic, and with food. I noticed when I started to heal my gut (and still am in the process of doing so), my body started responding a lot better to different treatments (they consider the gut the gateway to health :) ).
Posted 2/10/2015 4:58 PM (GMT 0)
Dave-

I've foot/plantar pain for about 6 years now. I used to run 5-6 times a week (no marathons or super-workouts, but just 3-5 miles to pound the pavement, exercise, and de-stress), but haven't done so in about 5 years now sadly. I (stupidly) ran through the pain for about a year, ignoring the problem. I did so mostly because it never hurt to actually run....but I paid for it when I finally got to the point where I was hobbling for 10-15 minutes every morning because I could put no weight on either foot without being in terrible pain. I always thought it was mechanical - I saw a physical therapist and a podiatrist and a couple orthopedists. I own just about every fasciitis-"fixing" tool that there is - orthotics (even $400 customs that made it worse), sono machine, all the night splints, etc. Nothing really worked other than simply stopping running. I still get pretty bad pain when I'm on my feet a lot, but nothing like I used to have when I was running. Now, my LLMD is convinced that I don't have plantar fasciitis, but rather that it is bartonella causing this. Who knows?!

My LLMD started me on Gabapentin for sleep and neurologic foot pain. It really did nothing for foot pain, but it absolutely helps me stay asleep. It has an off-label use to keep patients in delta-wave sleep patterns so I only take it at bedtime. I struggled for years with insomnia - waking at 2am exactly on the dot and being awake 3-4 hours. I was nearly a zombie unless I took ambien. Knowing I'd be awake all night caused me to get really anxious as bedtime approached. I now rotate through a half-tab of Ambien or Clonazepam or nothing with the Gabapentin (trying to avoid any dependency on Clonazepam or Ambien, so that is why I rotate). My sleep is much, much improved. I'll call it "fixed" when I'm medication-free and sleeping through the night, but for now it is making me a different person from the zombie I once was so I'll take it.

I do take probiotics (VSL#3 and Sacchromyces), but I often forget so I can't say I'm super compliant. I have tried bone broth some. I've made it from left over chicken bones and lamb shanks. If you have recommendations on how/what to do, I'll take those! I'm actually having a colonoscopy (UGH) in a few weeks to rule out stuff b/c I just can't seem to get the gut under control. I tried gluten and dairy-free diet, but that really made no impact whatsoever. My chief complaint here is a constant, pulling/aching pain in the lower abdomen/pelvis that's been present (and progressively more constant) for a year and a half now.
Posted 2/13/2015 8:14 PM (GMT 0)
I understand how you feel. I am also an athlete and since getting lyme in may I havent been able to do any of the things I used to do. It made me very depressed for a while but I've found physical therapy to help me the most. I've been doing physical and occupational therapy for a couple months and I've seen more benefit from that than any of the medications and things I've taken. I think that would help you a lot if it is an option. I was able to do physical activities for an hour a day for the last two weeks with no pain or weakness. They helped me pinpoint where the problems are in my body and where the inflammation is affecting me the most which has helped me describe my symptoms better to my doctors. They are helping me find ways to exercise and helping me develop an exercise program that won't hurt me. I am really seeing improvements from this work. I have also been going to a chiropractor and all my neck and back problems are gone now. I definitely think you need to treat the lyme but therapies like what I'm talking about should be part of the plan too if you want to get back to exercising. Not moving actually causes inflammation which one of my therapists explained. You stop moving cause your hurt and are inflamed and then your body gets more inflamed because it's not moving. Bodies need to be moved, stretched etc. and the movement will help move the lyme out. Especially since you had an injury that you aren't sure healed all the way, I would say definitely do some physical therapy to check it all out.
Posted 2/15/2015 5:54 PM (GMT 0)
Hey Dave! Welcome to the community! I'm Dan (25) and a newcomer, too. I've been in treatment with an LLMD since December 2014 with a clinical diagnosis of Lyme's & Bartonella (possibly Babesia too).

Just curious - are you from New Jersey? I'm only asking based on your username. If so, I happen to be in Ocean County (Toms River to be exact) and share a similar story - used to be active all my life and had to stop around my Junior year of high school for unexplained joint pain, fatigue, depression, anxiety, and unexplained GI issues (turned out to be Candida as well). Been through the ringer in terms of medical professionals from RA specialists, Orthopedics, and whatnot and finally found success at an LLMD a close friend of mine (who also lives in TR and has Lyme's/Bartonella & Babesia, too) recommended.

Since December I've drastically changed my diet for the Candida and I'm in the middle of my second round of antibiotics (Acticlate 150mg twice daily- full treatment plan below) and I'm finally able to move without pain (in fact I joined the gym the other day something I thought would no longer be possible). I still have many more miles to go in terms of gradually increasing dosages of antibiotics, etc. however, reading through these message boards and following support groups on Facebook have been extremely helpful in finding more information about Lyme's and co-infections.

Anyway - keep doing what you're doing and try to stay positive! Let me know if you happen to be in NJ - always looking for another local Lymie to help out! If you're taking the Acticlate definitely stay upright for at least 30 mins to an hour after taking it (helps reduce stomach upset) I found that out after reading through some message posts about doxycycline in general.

My treatment plan so far has been: 1 month of Morgidox 100mg twice daily
Currently taking to Acticlate 150mg twice daily (my LLMD believes in the gradual approach with the abx)
ADP Emulsified oil of oregano twice daily (this has worked wonders for the Candida - highly recommend)
4 Acidophilus once daily
Limited dairy intake and reduced carb/gluten free diet
Posted 2/15/2015 9:25 PM (GMT 0)
Hi DaSchwam!!

Welcome to our community!!! Thank you for joining us! I hope you continue to have good progress and regain your health soon!
Posted 3/4/2015 6:01 PM (GMT 0)

Hey DaSchawn,

I'm sorry it's been a while since you replied and I have not!  Things have been a little hectic around here.  My grandmother just passed away and with me and my dad both being treated for lyme, needless to say things are a bit nuts.  Can you message me your email?  My parents actually live in Monmouth County but I live in Hoboken, which is about an hour and a half from Toms River, so not bad.  I would love to know some local Lymie's in my area.  It sounds like your treatment protocol is very similar to mine.  Are you seeing Dr. S in Howell?

Keep me posted on how're your doing!

Dave

DaSchwam711 said...
Hey Dave! Welcome to the community! I'm Dan (25) and a newcomer, too. I've been in treatment with an LLMD since December 2014 with a clinical diagnosis of Lyme's & Bartonella (possibly Babesia too).

Just curious - are you from New Jersey? I'm only asking based on your username. If so, I happen to be in Ocean County (Toms River to be exact) and share a similar story - used to be active all my life and had to stop around my Junior year of high school for unexplained joint pain, fatigue, depression, anxiety, and unexplained GI issues (turned out to be Candida as well). Been through the ringer in terms of medical professionals from RA specialists, Orthopedics, and whatnot and finally found success at an LLMD a close friend of mine (who also lives in TR and has Lyme's/Bartonella & Babesia, too) recommended.

Since December I've drastically changed my diet for the Candida and I'm in the middle of my second round of antibiotics (Acticlate 150mg twice daily- full treatment plan below) and I'm finally able to move without pain (in fact I joined the gym the other day something I thought would no longer be possible). I still have many more miles to go in terms of gradually increasing dosages of antibiotics, etc. however, reading through these message boards and following support groups on Facebook have been extremely helpful in finding more information about Lyme's and co-infections.

Anyway - keep doing what you're doing and try to stay positive! Let me know if you happen to be in NJ - always looking for another local Lymie to help out! If you're taking the Acticlate definitely stay upright for at least 30 mins to an hour after taking it (helps reduce stomach upset) I found that out after reading through some message posts about doxycycline in general.

My treatment plan so far has been: 1 month of Morgidox 100mg twice daily
Currently taking to Acticlate 150mg twice daily (my LLMD believes in the gradual approach with the abx)
ADP Emulsified oil of oregano twice daily (this has worked wonders for the Candida - highly recommend)
4 Acidophilus once daily
Limited dairy intake and reduced carb/gluten free diet

Posted 3/4/2015 6:07 PM (GMT 0)
Hi Dave - For someone to email you, you'll need to enable your email. To do this: Click on 'My profile' at the top left of the page, then click on 'edit', then scroll down and select 'show email'.
Posted 3/4/2015 6:18 PM (GMT 0)
Ahhh, gotcha! That makes sense, thanks for the headsup Girlie!
Posted 3/4/2015 7:15 PM (GMT 0)
Hiya Dave... I can relate to much of what you say... I did my first triathlon in 2012, but have declined over the last couple of years... the not being active is the hardest part of all of this for me. My family got me an elliptical/recumbent bike machine for Xmas.... on my good days, I can do a half hour or so on the elliptical, and on my bad days, forget it, I can barely walk out to my mailbox or fold the laundry. Anyhow, just thought I'd say hello! You're not alone! :)
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