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10184447 tn?1408375644

Not sure if I have Lyme sick for a year, can you HELP me identify strange symptoms?

I am 25 years old I lived in Africa for around 3 months when I got back I had severe GI issue and over the months it turned into brain fog, dizziness, light-headedness, and feeling like I was going to pass out. I have sever pain generally in my head and chest area. I experience burning pain along with cold (freeze-like) sensations in my head down the back of my neck and chest. It always feels like I am wearing a heavy blanket as well and experience flu-like symptoms...just recently I have not been able to go outside due to increased light sensitivity...my body literally hurts when I am outside for more than a few minutes. I cannot drive either because of vertigo...I sound like quite the case. In the 25 years of my life I prided myself on always being healthy and had a great immune system..never caught bugs when others did. Now I am super concerned about all these weird symptoms. Just to clarify my main symptoms are in my head and chest..excruciating headaches come with neurological sensations that don't make since like feeling like cold water is dripping from the top of my head along with nausea and some vomiting. I guess what I am looking for is direction or commonality? Does anyone understand what I am talking about because I am desperate for help and am praying for answers. My doc thinks I have co-infections of Lyme disease...but there is no proof because I scored negative on the test. I'd really really appreciate anybody's input, advice, encouragement, or knowledge they may have on similar cases. THANKS AND MUCH LOVE!!!!
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Avatar universal
.... but remember that every one is different.  Depends on what co-infections you have, how strong your immune system is, and doubtless other factors too.  

What ever length of time it takes to get rid of Lyme and its evil little friends, it's worth doing!
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Avatar universal
Correction -- fwiw:

I was going by memory when I said 'under a year', and now that I've dug through the old notes, it was actually about ***13 months of treatment***, not including a 2-month skip in the middle to deal with an unusual reaction I had to yeast-based probiotics I was taking.  

Total time:  ~15 months treatment, including the 'meds holiday.'

Thanks for pointing out my bad math!  :)
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Avatar universal
... and on the other hand, it took me less than a year to eradicate my Lyme and babesiosis infections.    
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Avatar universal
You're welcome.  It seems to me that the biggest part of the problem is determining just what the problem is.  Modern medicine is little help.  If you have a Dr. that doesn't look at you with a question in their eyes when you mention mycoplasma, you've got one that's above average.  There are many tales on these boards of people who suffered GI problems after the typhoid vaccine, some went undiagnosed to their deaths.  In the 1960s the AF came to my little town in Ohio after a flood and gave us typhoid vaccines.  To be honest with you, I haven't been the same since.  Be prepared for a long fight, it can take as long as five years to be rid of them!  Also make note of what I have mentioned in other posts, many of them are already antibiotic resistant because the chickens that laid those eggs were fed antibiotics.  Hope we're on the right track.  And at the risk of having my post deleted for mentioning religion, if Lauren is for him, he will be for you.  Best of luck.
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10184447 tn?1408375644
woah I never considered that nutrinut bob! That is something I want to mention to my doctor who is treating me for babesia. Yes, yes I did get my typhoid vaccine by the way along with several other vaccinations. Thanks a lot. :)
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Avatar universal
I'm going to make an assumption here.  I'm going to assume you received a typhoid vaccine before heading out to Africa.  The bacteria used to make these vaccines were/are grown on chicken eggs and can be quite rife with mycoplasma contamination.  Mycoplasmas once inside a new host, can revert back to their full form.  I feel this is a significant source of Lyme and co-infections, but I doubt big pharma would agree with me.
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Avatar universal
I never saw a tick or a bite on me or on my kid, but we both had Lyme and babesiosis.  It's not that unusual, and I think the medical profession overstates its case ... because much of what the docs are told about Lyme was developed for research standards and not for clinical [patient diagnosis] standards.  The research data needs to be very pure and firm, while diagnostic data has to take into account all the variables (known and unknown) about different infections and strains and each person's immune system variabilities ... as well as like me:  no rash, but strongly positive tests for Lyme and babesia.  

Many docs are taught the research standards and apply that in their practice:  'No rash?  then no Lyme!'  but it just doesn't work that way all the time.  
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10184447 tn?1408375644
Thanks for all your information!! So helpful..so you say a 31/41 combo plus symptoms is enough to diagnose? I am seeing a lyme literate doctor who says she is highly suspicious I have babesia but not sure. I have been on treatment for a month and nothing has noticeably changed...still feel sick as ever. Is that normal? I am taking Malarone, Doxy (400mg), Azithromycin, and Stromectol.
Ps. The regular doctors can't find anything wrong with me and it is really confusing to me...because I feel super sick, headaches, vomiting, cold and burning sensations. I guess I am just concerned about my body being harmed by this Lyme whatever it is.
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10184447 tn?1408375644
Thank you Jackie for all of your insight. The doctor I am seeing is a Lyme literate doctor her name is Dr. Jenny Franczak MD. I started seeing her a month ago and I asked her do I have babesia? Are you 'sure' I have Lyme related illness. She responded "sure is a strong word I am highly suspicious" I just fear the wrong diagnosis but I guess there aren't many things it could be. I just never remember getting bit by a tick. I am going to ask her that question though, if my tests are valid on strains of Lyme found in Africa. We did not discuss that. More specifically it was Mozambique Africa. So when I first saw her a month ago she started me on medication: Malarone 2 pills 2x day and Doxy 2pill 2x a day (400mg) also Azithromycin 1x day. I am also taking deworm medicine called Stromectol. I really cannot tell a difference. I still feel very sick nothing has noticeably changed and it has been a month. I frequently go to urgent care because the pain is unbearable and they cannot find anything wrong with me except reoccurring bladder infections. What do you think of my tests results? I am seeing Dr. Franczak very soon do you know of any questions I should ask her? I so appreciate your help.
ps. I am having extreme cold sensations all down chest in stomach, head and neck have you ever heard of that before? Thanks.
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Avatar universal
Bartonella is one of the common coinfections of Lyme.  Bart and Lyme have a lot of overlap of symptoms.

Bartonella can affect the gut (stomach, intestines, liver, spleen) as well as nerves, skin, the brain, and the heart. It can cause blurry vision, brain fog, headaches, fatigue, anxiety, depression, irritability/rage, and even panic attacks. It can also affect muscles and joints. Some distinctive symptoms are sore soles of the feet (Bartonella Henselae), shin bone pain (Bartonella Quintana), and a red stretch-mark like rash or papular rash (red speckles). Different people with Bartonella can have completely different sets of symptoms.

The strange neurological sensations you describe such as the feeling of cold water, can sometimes be attributed to Bartonella. Others have described burning sensations, pins & needles, stinging, tingling, or numbness.  I've had these in my hands, but also some significant tingling in my legs and lower trunk as well as briefly in my right arm. I've also had a lot of GI problems courtesy of Bart, including infections with h.pylori and campylobacter.

Muscle twitching is also common with Bartonella.  (Magnesium deficiency from Lyme can also cause muscle twitching. See how it can get confusing which is causing what?)

If you'd like to know more about Bartonella, you can look up some of the papers done with Dr. Breitschwerdt, a veterinary professor at NC State.  He's an expert on it in the lab and has worked with a number of medical researchers to do studies and write papers. He worked with Galaxy Labs to come up with a new culture test because current antibody tests miss so many cases.

I saw one of his YouTube videos and he explained that he's had trouble getting the medical establishment to take Bartonella seriously. He has a personal stake in this topic. He believes his father died of a severe undiagnosed Bartonella infection (after testing negative for it).

There was one just published Study where they did in depth testing of over 100 veterinarians to look for Bartonella, on the belief that they might be a high risk group. Humans can get it from cats, dogs, or over a dozen different biting insects.  A surprisingly large percentage of the vets had it.  

The surprising thing is that half of them had a species other than the most common one here in the U.S (Bartonella Henselae). Three other species turned up, and there are no commercial labs test for them. It's unlikely to get a diagnosis without a positive lab test. Most doctors know very little about Bartonella. Up to half of people who actually have b. henselae can still test negative on antibody tests. Antibody levels often decline over time below the lab cutoff for a "positive."

Bartonella moves in and out of the blood, hiding in blood vessel linings. It is more prevalent than previously thought, and can be chronic. I sometimes wonder if I already had low grade Bartonella before I got Lyme and Babesia.    Bart generally takes different antibiotics than Lyme, so standard Lyme treatments often won't eliminate Bartonella.  The first choice for Bart is Rifampin. It helped me, but what really helped me the most was Levaquin. I had to stop taking it due to tendon pain. At this point, I'm on Cipro, which is also helping. Hopefully I won't have any tendon problems.

Unless you're willing to shell out 4 figures for the culture test, you'll have to consider a clinical diagnosis based on symptoms.  A good LLMD can do that. If you have an untreated coinfection, Lyme treatment usually doesn't work well.

You might be interested in an article called "Bell's Palsy of the Gut".  It was very eye opening for me and described many of my GI problems.

As far as your Western Blot for Lyme, what does your doctor say?  Some ILADS docs consider an IND as a positive in patients who are symptomatic.  An Indeterminant result means something showed up on that band, just not enough to clear the bar for a +.  

But even the 31/41 combo should be enough for a diagnosis with symptoms, even if a doc doesn't know exactly where you got it.  I mean an LLMD, of course.  Most mainstream docs have no idea how to read a Western Blot. The CDC encourages them not to, telling them to blindly follow the result.  But that's a whole 'nother story...

Do you have a LLMD?  If not, I encourage you to find one. If you are diagnosed, you'll most likely need more than the standard 1 month of treatment to recover.
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Avatar universal
Okay, now I've got my Lyme cheat sheet in front of me, listing what the bands mean:

31 -- outer surface protein (OSP), specific for Lyme
39 -- a major protein of B.burgdorferi [Lyme]; specific for Lyme
41 -- could be Lyme, or could be another bacterium
58 -- unknown, but may be Lyme

Then in your post you say:  "My doc thinks I have co-infections of Lyme disease...but there is no proof because I scored negative on the test."

So does the doc agree that you have Lyme?

And on what basis does he say you don't have any co-infections?  Were there other tests run?  The IGeneX test is, to my understanding, only for Lyme.  Other, separate tests would be run for co-infections.

And then the big question is:  are these tests valid on strains of Lyme found in Africa?  Did the doc talk to you about that and about other infections you might have gotten there?

Before I went to Africa etc. years ago, I consulted with a tropical disease specialist in NYC (happened to run across his name yesterday; had forgotten all about him till then). He was a wealth of knowledge in telling me what vaccinations and meds to take to prevent problems.  He's retired now, but there are other docs who understand this stuff big time.  Hence my question about what kind of doc you are seeing now.
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Avatar universal
It's good that the doc you are seeing is using IGeneX -- that's the favored lab of Lyme specialists because of the way the test is structured -- it's more accurate for reasons I won't go into now.

The question stands:  what kind of doc are you seeing who ran the IGeneX tests?  The doc's mental frame of reference is important to knowing what s/he is taking into account or discarding in the diagnosis and treatment approach.  
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Avatar universal
Oops, sorry, I missed copying this from the other post -- this way it will all be in the same place.

================================
I just took IGENEX test for lyme because I have been severely sick (unable to work go to school etc) I'm 25 and lived in Africa for about three months..came back and that is when all this started its been a year now and docs are kinda clueless. Here are my test results for IGENEX
30 kDA    -
31 kDa ++
34 kDa –
39 kDa IND
41 kDa ++
45 kDa –

On the next section it says
58 +

Scored negative for burgdorferi

Then the confirmation test says
IgM 31 kDa Epitope Test   POSITIVE

So first test inconclusive and second test positive?
==========================================
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Avatar universal
Welcome to MedHelp --

So sorry to hear your situation!  

You say, "My doc thinks I have co-infections of Lyme disease...but there is no proof because I scored negative on the test."

Questions:  

-- What kind of doc is s/he?  Infectious disease, tropical medicine, other?  That frame of reference can help figure out how the doc is viewing your situation.

-- Do you have copies of your Lyme test results?  If so, can you tell us which lab did them and what the detailed results are?  There are likely 'bands' referenced on the test, each with a number, and each having + or - signs.  

I spent some time in Africa years ago, and it's whole different place in many ways, including medically.  So I hear you.

No one here is medically trained that I know of, but we are glad to give you some ideas and comments on where to go for some answers.

Take care, will watch for your post.  You might want to put your reply in the this post (the one that has your name at the top) so it will be easier to find than under the other one.  No problem posting on other people's post, but it gets hard to locate later.
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