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Posted 12/27/2016 8:24 PM (GMT 0)
Hi, All: I'm a new poster to this forum but have been fortunate to use it for information and support over the last several months.

I've had a series of three lyme tests from a standard lab over the last five months:

All three ELIAS tests have been positive at 1:28, 1:51 and 1:33.

All three Western Blot tests have had the same results:

IgG positive for bands 23, 39, and 42.

IgM positive for band 23.

I have also tested positive Babesia Microti IgG 1.80.

Initially, there were many symptoms and I was fortunate enough to have a non-LLMD that diagnosed me with Lyme Disease (despite being not being CDC-positive) and put me on 90 days of Doxy, which I have just finished.

Over that time, many of my symptom improved. I am, however, still experiencing muscle pains and aches generally, tingling in my hands, and recently I have gotten all over near constant muscle twitches.

I have consulted an LLMD, who is putting me back on an aggressive antibiotic program, which I am just starting.

My questions are:

1. With my lab history, does it seem pretty definite that I have Lyme Disease and possibly a Babesia infection?
2. Does muscle twitching seem, based on your experiences, consistent with a Lyme or Babesia diagnosis?

Thank you so much for any insights you can share.
Posted 12/27/2016 8:31 PM (GMT 0)
I can't help you much, except with my own situation. Muscle twitches is indeed one of the symptoms I have, although now it's gone more than it's present. It would be my eye, or arm, or randomly one of many places... I tested + for Lyme and Mycoplasma, but have symptoms like rashes of Bartonella and Babesia.

Also, where one of these infections is +, there is a great chance the others exist as well. It's extremely common.

I'm sure others will chime in that know more than I do.

3Hump
Posted 12/27/2016 8:55 PM (GMT 0)
Thanks so much, 3Hump

While I hate to hear that you are having muscle twitching too, it is comforting to hear that I am not alone it what I am experiencing. Take care.

Invictus67
Posted 12/27/2016 9:06 PM (GMT 0)
Welcome Invictus! Sorry you're going through this, it indeed does sound like what so many of us are going through with Lyme and or some of the co-infections that often come with it. They tend to overlap in symptoms.

Are you doing any de-toxing to rid your body of dead microbes and bacteria? Our systems get overwhelmed with this and lymph nodes and such get blocked up. De-toxing and many other valuable posts are on our intro topic "New to Lyme?....start here", that we encourage every new member to read through.
Posted 12/27/2016 9:07 PM (GMT 0)
Welcome to our community!

Please read the topic New To Lyme?.......Start here! you will find there a lot of useful information.

Regarding your question, Lyme is a clinical diagnosis, which means that doctor needs to take into account your symptoms, But in your case it is obvious, because you tested positive for bends that are specific for Borelia bacteria.
Posted 12/27/2016 9:09 PM (GMT 0)
I know exactly what you mean by that, hahahahaha - we all feel that way I am sure!

Said with utmost sincerity: "Aw, I'm soooo sorry you have x" .

Thought quietly in the mind, with utmost sincerity: (YES!!!! I am *not* crazy),

hahahahahahahahahahahahahahaha
Posted 12/27/2016 9:43 PM (GMT 0)
Thank you Blueberrymuffin and Julymorning for taking the time to reply.

LLMD has given me info on detoxing, including Epsom baths and staying away from gluten, sugar and (unfortunately) alcohol, but I will certainly take another look at "New to Lyme" for more information.


Invictus67
Posted 12/27/2016 10:24 PM (GMT 0)

Invictus67 said...
Hi, All: I'm a new poster to this forum but have been fortunate to use it for information and support over the last several months.

I've had a series of three lyme tests from a standard lab over the last five months:

All three ELIAS tests have been positive at 1:28, 1:51 and 1:33.

All three Western Blot tests have had the same results:

IgG positive for bands 23, 39, and 42.

IgM positive for band 23.

I have also tested positive Babesia Microti IgG 1.80.

Initially, there were many symptoms and I was fortunate enough to have a non-LLMD that diagnosed me with Lyme Disease (despite being not being CDC-positive) and put me on 90 days of Doxy, which I have just finished.

Over that time, many of my symptom improved. I am, however, still experiencing muscle pains and aches generally, tingling in my hands, and recently I have gotten all over near constant muscle twitches.

I have consulted an LLMD, who is putting me back on an aggressive antibiotic program, which I am just starting.

My questions are:

1. With my lab history, does it seem pretty definite that I have Lyme Disease and possibly a Babesia infection?
2. Does muscle twitching seem, based on your experiences, consistent with a Lyme or Babesia diagnosis?

Thank you so much for any insights you can share.

Hi Invicitus67 - welcome to our community.

Just confirming what others have posted before me:

yes your test results indicate Lyme disease - bands 23 and 39 are lyme specific.
You also have Babesia. Many of us have Babs and don't test positive...but you DID test positive...no questioning you have tick-borne diseases.

Yup, muscle twitching is consistent with lyme and or co-infections.
Posted 12/27/2016 11:04 PM (GMT 0)
Thanks, Girlie.

It's helpful to get confirmation that bands 23 and 39 are Lyme-specific and muscle twitches have been experienced by others, as their onset has me a bit concerned and questioning if it's Lyme-related. It's frustrating and sometimes scary (as I am sure you know) to have new symptoms emerge as old ones go away.

Invictus67
Posted 12/27/2016 11:11 PM (GMT 0)
This is from an interview with Dr. Horowitz: "....supporting that diagnosis by finding borrelia-specific bands on the Western Blot, which show evidence of exposure. This would include finding the 23(OspC), 31(OspA), 34(OspB), 39, and 83-93 kDa bands on the Western Blot. "


Full interview:

www.publichealthalert.org/-interview-with-dr-horowitz.html
Posted 12/27/2016 11:12 PM (GMT 0)
Sometimes during treatment for one infection, new symptoms of another co-infection will emerge...pointing us in the direction to treat that co-infection.

Scary, yes. I have to say that I actually had 'fear' for a long time. I felt the power of this disease...and what it was doing to my mind and body...and it scared the heck out of me.
Posted 12/27/2016 11:19 PM (GMT 0)
I have twitching and some wasting. So it's par for the Lyme course as many lymies have this.
Posted 12/27/2016 11:36 PM (GMT 0)

Randy Eichner said...
I have twitching and some wasting. So it's par for the Lyme course as many lymies have this.

...oh yeah - the muscle wasting...horrid.
Posted 12/28/2016 1:09 AM (GMT 0)

Girlie said...

Randy Eichner said...
I have twitching and some wasting. So it's par for the Lyme course as many lymies have this.

...oh yeah - the muscle wasting...horrid.

Yes yes ..horrid ...i think it is bartonella eating nerves ..imo
Chinesr cats claw ,iv magneisium ,bee venom ,rocephin and rifampin zith have helped resolve twitches
Posted 12/28/2016 2:36 AM (GMT 0)
I have muscle twitching for years now. Never stops. Mine is neurolgical I'm pretty sure. I think you're right about bartonella eating nerves. I think it's eating my brain. Feel like I'm slowly dying. Have had this for 4 years now. I'm probably developing alzheimers. Tons of brain pressure every day.

How the medical community scoffs at lyme disease as if it's some minor ailment, I just cannot comprehend. It's on the same level as HIV as far as I'm concerned. I think people are dying left and right from Lyme disease, yet they won't recognize it due to their precious PR campaign.
Posted 12/28/2016 2:41 AM (GMT 0)

gfields said...
I have muscle twitching for years now. Never stops. Mine is neurolgical I'm pretty sure. I think you're right about bartonella eating nerves. I think it's eating my brain. Feel like I'm slowly dying. Have had this for 4 years now. I'm probably developing alzheimers. Tons of brain pressure every day.

How the medical community scoffs at lyme disease as if it's some minor ailment, I just cannot comprehend. It's on the same level as HIV as far as I'm concerned. I think people are dying left and right from Lyme disease, yet they won't recognize it due to their precious PR campaign.

It makes HIV look like a cake-walk IMO
I think HIV treatment has come a long way...Lyme treatment? not so much.
Posted 12/28/2016 12:20 PM (GMT 0)
Yep, I'd have to agree. I remember when Charlie Sheen announced he had HIV from Two and a Half Men. He said he pretty much felt totally fine.

Honestly, I think there's a relatively simple cocktail out there that could be put together for us, but unfortunately they have this PR campaign that suppresses research. If they had half an effort to treat Lyme disease, like they did for HIV, I'm sure they could figure out effective treatment. I mean, look at how far Dr. MacDonald has come, and he's just one guy in a basement with a microscope. If they had a team of professional researchers who were actually motivated, and they collaborated with each other, I'm sure they could come up with an effective treatment in 2 years time. But the trend has been to spend money NOT researching lyme disease, for whatever reason.

Maybe we need to start some guerilla tactics like painting politicians cars green, and writing "Help Cure Lyme" or something like that. Something that will get on the news.
Posted 12/28/2016 12:48 PM (GMT 0)
Hi Invictus67,
Welcome to our community, officially!! I'm so glad you have found this community to be helpful already! And, I'm glad you chose to officially join us!

I too have had a ton of muscle twitching, and agree with the others. It is pretty bizarre what these infections do to us and the willing ignorance of the medical community as a whole.

I've read from a previous cancer patients as well as previous AIDS activists that later ended up with Lyme and company, that not only would they rather have had cancer or AIDS again, but the support for those conditions are far beyond what Lyme patients have access to. AIDS activists have said that Lyme is going through what they did in the beginning years of it being recognized also.

And, just to clarify - Bartonella doesn't actually "eat" the nerves, but it can have a profound effect on them, just as Lyme can. Lyme is a demyelinating disease, which means that it damages the protective covering of the nerves - and Bartonella can cause a lot of nerve issues as well.
Posted 12/28/2016 2:33 PM (GMT 0)
All, thank you so much for the support and information. As said above, it helps to know that others have had the similar experiences.

I am especially sorry to hear about the muscle wasting, which sounds like it comes from Bartonella. My non-LLMD didn't test for Bartonella, as she felt the treatment provided for Lyme would also eradicate any Bartonella, if I had it.

However, my LLMD has me scheduled to test for Bartonella after the induction period. Does this sound correct?

Thanks again.

Invictus67
Posted 12/28/2016 3:58 PM (GMT 0)
I had a lot of twitching the first few months of being sick. It actually went away for a couple years and would only be ccasiobally get it during a herx. The last couple months the twitching has come back and vibrations as well. I stopped cryptolepis herb I was taking for Babesia about 6 months ago and seems like things have slowly been going downhill. Need to start it again. I get such horrible fatigue with every drop that I add. I have Lyme, Babesia and Bartonella. With Bartonella, it took 2.5 years before I tested positive for Bart. I knew I had it though as my heels would hurt in the morning, had Bart rash and a lot of problems with eyes.
Posted 12/28/2016 4:04 PM (GMT 0)
Treatment for Lyme will not take care of a Bartonella infection - they are two different types of bacteria and each needs specific treatment.

Did you mean that you will be testing for Bartonella after you have started Lyme treatments? This doesn't often work out well from my understanding, as treatment often stressing the immune function even further and so little to no antibodies can be formed to the infection being tested for.
Posted 12/28/2016 5:41 PM (GMT 0)
Thanks Inspiredby3 and Traveler:

I have the heel pain in the morning too and my toes just feel "weird." Had the rash too on my inner thighs but (at the time) didn't know what it was.

Traveler - Maybe I misunderstood but I thought my LLMD intended to test me for Bartonella after a six-week induction protocol. Based on what you said, I will reach out and get clarification.

Invictus67
Posted 12/28/2016 11:04 PM (GMT 0)

gfields said...
Yep, I'd have to agree. I remember when Charlie Sheen announced he had HIV from Two and a Half Men. He said he pretty much felt totally fine.

Honestly, I think there's a relatively simple cocktail out there that could be put together for us, but unfortunately they have this PR campaign that suppresses research. If they had half an effort to treat Lyme disease, like they did for HIV, I'm sure they could figure out effective treatment. I mean, look at how far Dr. MacDonald has come, and he's just one guy in a basement with a microscope. If they had a team of professional researchers who were actually motivated, and they collaborated with each other, I'm sure they could come up with an effective treatment in 2 years time. But the trend has been to spend money NOT researching lyme disease, for whatever reason.

Maybe we need to start some guerilla tactics like painting politicians cars green, and writing "Help Cure Lyme" or something like that. Something that will get on the news.

i like your thinking gfields
Posted 12/28/2016 11:22 PM (GMT 0)

bluelyme said...

gfields said...
Yep, I'd have to agree. I remember when Charlie Sheen announced he had HIV from Two and a Half Men. He said he pretty much felt totally fine.

Honestly, I think there's a relatively simple cocktail out there that could be put together for us, but unfortunately they have this PR campaign that suppresses research. If they had half an effort to treat Lyme disease, like they did for HIV, I'm sure they could figure out effective treatment. I mean, look at how far Dr. MacDonald has come, and he's just one guy in a basement with a microscope. If they had a team of professional researchers who were actually motivated, and they collaborated with each other, I'm sure they could come up with an effective treatment in 2 years time. But the trend has been to spend money NOT researching lyme disease, for whatever reason.

Maybe we need to start some guerilla tactics like painting politicians cars green, and writing "Help Cure Lyme" or something like that. Something that will get on the news.

i like your thinking gfields

Sign me up....I'm working on my disguise now.
Posted 12/29/2016 4:07 AM (GMT 0)
i'd like to see them start by just standardizing the test for lyme disease to use PCR where they see DNA as opposed to your body's response to an infection. everyone and their uncle knows that lyme can suppress the immune system early on and not create antibodies against it but you can't hide live bugs swimming around in your blood or urine + you can spot the other co-infections the same way.

the western blot test is a really sad joke as the go to test especially since its so critical to catch lyme as early as possible to improve success to eradicate it.
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