NeuroTalk Support Groups - The first potential cause for my symptoms was identified

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- - The first potential cause for my symptoms was identified (https://www.neurotalk.org/peripheral-neuropathy/230056-potential-cause-symptoms-identified.html)

Quote:

Originally Posted by Healthgirl (Post 1188974)

Wow that is great!
Why did you have to do abx for 6 weeks first?

I think depending on the patients history, some doctors do an "antibiotic challenge test" to help draw the Lyme bacteria out from where it might have taken up residence.

I've always heard people say that Lyme hides and tries to evade the immune system. I never thought this was true until I started looking at what some of the Lyme researchers have been publishing. Dr. Eva Sapi out of the University of New Haven has a paper that shows that the Lyme bacterium changes shape and does hide in biofilms. The University of Yale Medical school showed that Lyme proteins remained in mice who had Lyme and were treated with antibiotics. There are lots of small studies out there showing stuff like this, which makes this so complicated to understand...lots of grey area, for sure.

Unfortunately, Lyme research is small and it is not well funded. And the research is not conducted in humans because no IRB would ever approve that study. It's really why we don't know as much about it as we should.

Quote:

Originally Posted by mrsD (Post 1188993)

Amazing! Your persistence is an inspiration to others
here who continue to suffer lazy and
Arrogant doctors who refuse to consider
Lyme and refuse to learn about it.

I hope you will stick around and continue to
Help other members here.:hug:

Oh, I will stick around. I'm fairly certain that I have some neurological damage that might never repair. And there is always the possibility that having Lyme and my neuro symptoms are a coincidence.....probably not, but you never know. :)

Quote:

Originally Posted by onebeed (Post 1189048)

I am sorry you have Lyme disease. Make sure they treat you for Bartonella and Babesia also. They say 90% of people with Lyme disease have these co-infections also. Bartonella is most often associated with neuropathy. The tests for Bartonella and Babesia are woefully inadequate because there are hundreds of different strains and most tests only test for 2 or 3 strains. A good Lyme disease doctor will treat you for these diseases even if you test negative for them and see if you respond to treatment.

They definitely are considering Bartonella and Babesia because of my entire symptom picture. I have mystery rashes on my face, neck and arms that come and go on a weekly basis (this started before the acute phase of my neuropathy pain). I know Bartonella has the potential to cause that; I know in some people it does also cause severe burning pain.

Quote:

Originally Posted by DavidHC (Post 1189001)

While I'm sorry to hear this, it's also wonderful news. At least now you know one of the causes and part of your struggle is over. What's next? More antibiotics? Regardless, I wish you the best in dealing with this and hopefully getting some improvement. I also hope that any and all other causes come to light.

I'll look back through your posts and see why you suspected Lyme, since perhaps I should be looking for that too. I'll also look to see what tests I can have done, ideally one where I don't have to take so many antibiotics. But perhaps that's unavoidable.

Thanks again for updating us.

The clinic I'm going to is very experienced and open minded. I'm adding in a second antibiotic. They asked me if I was okay with that and also gave me an option to take a herbal instead of the second antibiotic. We are going to take this step by step. They are probably going to run some chemical exposure testing on me since I was a chemist for over 13 years. I'm very happy with this clinic. They take my insurance, are reasonably priced, and don't think every sick person who walks in the door has Lyme. While they are definitely "Lyme Literate", it's only one small part of what they do. A doctor that I saw here in Madison recommended them to me when she suspected that I might have Lyme disease.

When I get home from work, I will post more about my symptoms - especially the ones that I had prior to all my neuropathy issues. And if my situation resonances with anyone on this message board, then I'd gladly provide more details about it.

Quote:

Originally Posted by madisongrrl (Post 1189097)

I get the rashes too. Never knew what was causing them. Still getting them.:confused:

It sounds like you're in very good hands. I'm happy for you. I'm also glad to hear they offered you an herbal option - out of curiosity, what was it? I especially think the one step at a time and further testing, given your background, is a sound course of action. With so much incompetence, it's nice to finally something like this.

it's funny you mention your symptoms before the neuropathy came on the scene, since I've been thinking about it in my own case. In fact, last night my wife and I spoke about how before my heart palpitations and any of the dry flaking skin on my hands or numb hands, I started to get soars on the bottom of my toes, and that then we thought it might be due to the large amount of mold in the bathtub at the time. We couldn't get it out and it would come back every week, mostly pink but also some black, and we finally changed the tub. So, perhaps my situation goes back to mold toxicity. Just trying to think about my past and find the cause.

I'd be very interesting in anything more you have to say about your own background. And I've also had rashes, or itchy spots, but I think it's not so much rashes as it is a histamine overload.

Anyway, I wish you the best as you begin to heal yourself and try to discover more of the puzzle.

Quote:

Originally Posted by madisongrrl (Post 1189099)

The clinic I'm going to is very experienced and open minded. I'm adding in a second antibiotic. They asked me if I was okay with that and also gave me an option to take a herbal instead of the second antibiotic. We are going to take this step by step. They are probably going to run some chemical exposure testing on me since I was a chemist for over 13 years. I've very happy with this clinic. They take my insurance, are reasonably priced, and don't think every sick person who walks in the door has Lyme. While they are definitely "Lyme Literate", it's only one small part of what they do. A doctor that I saw here in Madison recommended them to me when she suspected that I might have Lyme disease.

When I get home from work, I will post more about my symptoms - especially the ones that I had prior to all my neuropathy issues.
And if my situation resonances with anyone on this message board, then I'd gladly provide more details about it.

Quote:

Originally Posted by DavidHC (Post 1189005)

Madisongrrl, whenever you get a chance, I'd be grateful if you would tell us why you (may) think the test you took is more accurate than the Western Blot and others.

This is such a complicated topic. There seems to be some really great tests out there but they are criticized because they haven't gone through the FDA process. However, that process is expensive and takes several years to get through.

The clinic that is handling my Lyme utilizes many types of testing. I'm not sure why they decided on the iSpot. I have read that the iSpot might be more accurate than the Western Blot, but I'm not sure how factual this is. I did have another doctor offer to run the iSpot, because she thought the test was indeed the most accurate. But she does not specialize in Lyme so she referred me to my current Lyme clinicians. I'm going to call her up and thank her because her recommendations are what set this in motion.

Here is a video that explains the iSpot:
https://www.youtube.com/watch?v=kxwNu33zRE8

I personally feel that the CDC test is worthless. I had a known deer tick bite in 2005 in Lyme-endemic northern Wisconsin that was followed by a typical Lyme "summer flu" a few weeks later- throw in a few seizures and some neurological style symptoms as well. I had 4 negative CDC Elisa tests. Clearly I had some tick-borne illness. These symptoms lasted and lasted, while my doctors scratched their heads and went on to test me for other things like MS. They should have known better. If it looks like a duck.....it's a duck.

Quote:

Originally Posted by DavidHC (Post 1189005)

Years ago I got a bite on my ankle and till today I don't know where it came from. I don't think it's connected, but I did live in a Lyme ridden place, I've just learned. This makes me wonder. But given what I've just read about diagnoses and even if done accurately the possibility of healing, I'm somewhat frozen and not sure how to proceed. I will write the other person, Leeza Jane, I believe her name way, who found out she had Lyme years later. Thanks again for sharing and also for making me think about this.

If your doctors can't find out what is causing your symptoms and give upon you, then maybe Lyme might be an avenue to explore. I know some people feel that Lyme can be a clinical diagnosis alone, and maybe that is true....but I personally felt that I needed a test to prove that it was indeed Lyme. Plus, I've had a symptom reduction after 2 months of antibiotics and LDN. So that is a conformation of sorts.

The first potential cause for my symptoms was identified

Quote:

Originally Posted by DavidHC (Post 1189140)

Quote:

Originally Posted by DavidHC (Post 1189140)

I started to get soars on the bottom of my toes, and that then we thought it might be due to the large amount of mold in the bathtub at the time...... So, perhaps my situation goes back to mold toxicity. Just trying to think about my past and find the cause.

The Lyme clinic tested my C4A , which is a marker for inflammation. Mine was high, but not sky high. This test was covered by my insurance (BCBS). If my test result was higher, then I would have been tested for mold. I would imagine the mold test is more expensive and not covered by insurance.

Quote:

Originally Posted by DavidHC (Post 1189140)

I'd be very interesting in anything more you have to say about your own background. And I've also had rashes, or itchy spots, but I think it's not so much rashes as it is a histamine overload.

Anyway, I wish you the best as you begin to heal yourself and try to discover more of the puzzle.

I'm almost 40 now, but even way back in college I had problems with my knees. They would constant swell up for no reason. They would get so painful that I couldn't even straighten them when I was sitting in lectures. I would get night sweats on a weekly basis; I still get them about two times each week. I've always blamed it on stress, but that is probably not the case.

Then I went through all kinds of crazy symptoms after my tick bite in 2005 - including extreme fatigue, nausea, seizures, heart palpitations, and electrical sensations.

I had injuries that wouldn't heal. My toe joint would be painful to the point where I limped around all the time. My foot doctor saw the joint pop out and turn red at one appointment. He didn't know what think. I had a wrist injury from a mountain bike race that never healed. My EMG was negative, but I continued to have burning pain in that wrist. There were too many issues like this to even document.

Things started to get bad in 2012. I had to quit racing mountain bikes. I had an issue with burning tendon pain above my knee that stumped 4 PTs. The pain started to move around my right leg - inside and outside of knee, IT band etc. I was getting tons of pain in my back and hips. I had problems sitting. My back would lock up for no reason.

In late 2013, I had deep pain in my pelvis and swollen lymph nodes that brought me into urgent care. Fatigue started setting in, I was getting reactive to cold temperatures, my fingertips starting turning purple (Raynauds), and I felt generally ill.

In FEB 2014, my sensory symptoms started, spread all over my body, and I've been in a world of pain ever since. So looking back, some of muscle-skeletal pain might have been sensory nerve issues. It's hard to parse out. :(

Wow! this is great that you found a possible cause, that might be treatable. Good luck with the treatment!

Madisongrrl,

Thank you for all this. Where to start...

First off, I hope you had a good weekend, though it must have been strange given the bomb that was dropped on your lap. But, again, I'm glad you have some answers.

You've had quite a few twists and turns. I am really rooting for you to improve, and wish I could do more than just hope and wish.

I asked about the herbal antibiotics, because I've done months of research on them and intend to begin introducing a series of them over a two-month period. If I can be of use, let me know please.

I'm convinced that in my case it was some sort of bacterial or fungal infection, or that's my strong suspicion, and that it leaked through my gut, to was worsened by my gut health and poor diet. We'll see what happens in a few months, but one thing you're journey and your efforts have led me to do is to think long and hard about my own past and history. I don't think it was Lyme in my case, though who knows, and thankfully you've provided us with some great resources if any of us suspect it. I think mold or bacteria or yeast are more likely and not via a bite. But who knows.

What else? There's so much here. Well, it made me sad to hear about that nurses poor daughter. But you will definitely have a sympathetic person there, who will actually care. Why is it that more often than not it's nurses who care and are helpful and even knowledgeable, rather than, say, physicians? Rhetorical...

BTW I get night sweats too, but usually after a night of eating very heavily and eating lots of carbs. I was too stupid to stop and realize how I was damaging my body. Now I can't touch carbs, or grains to be more precise.

Well, again, I'm rooting for you. Please let us know how you're doing.

Quote:

Originally Posted by madisongrrl (Post 1189178)

Honestly I can't remember what the herbal option was. I was too shell shocked to take everything in when I was on the phone with the doctor. Their general approach will be to rotate antibiotics, herbals, and/or supplements depending on what is happening. Some people need IV antibiotics and some do not, in their opinion. I'm sure there will be more in depth discussions at my next appointment.

I've mentioned this before, but it's nice because the nurse that is working on my case has a daughter with SFN who acquired it through a Lyme infection. Her poor daughter needs to wear a cooling vest to go outside when it's hot.

This nurse also told me that they see many people with Lyme who have issues with their trigeminal nerve, like I do. I swear that she knows more than any other doctors or neurologists that I've seen.

The Lyme clinic tested my C4A , which is a marker for inflammation. Mine was high, but not sky high. This test was covered by my insurance (BCBS). If my test result was higher, then I would have been tested for mold. I would imagine the mold test is more expensive and not covered by insurance.

I'm almost 40 now, but even way back in college I had problems with my knees. They would constant swell up for no reason. They would get so painful that I couldn't even straighten them when I was sitting in lectures. I would get night sweats on a weekly basis; I still get them about two times each week. I've always blamed it on stress, but that is probably not the case.

Then I went through all kinds of crazy symptoms after my tick bite in 2005 - including extreme fatigue, nausea, seizures, heart palpitations, and electrical sensations.

I had injuries that wouldn't heal. My toe joint would be painful to the point where I limped around all the time. My foot doctor saw the joint pop out and turn red at one appointment. He didn't know what think. I had a wrist injury from a mountain bike race that never healed. My EMG was negative, but I continued to have burning pain in that wrist. There were too many issues like this to even document.

Things started to get bad in 2012. I had to quit racing mountain bikes. I had an issue with burning tendon pain above my knee that stumped 4 PTs. The pain started to move around my right leg - inside and outside of knee, IT band etc. I was getting tons of pain in my back and hips. I had problems sitting. My back would lock up for no reason.

In late 2013, I had deep pain in my pelvis and swollen lymph nodes that brought me into urgent care. Fatigue started setting in, I was getting reactive to cold temperatures, my fingertips starting turning purple (Raynauds), and I felt generally ill.

In FEB 2014, my sensory symptoms started, spread all over my body, and I've been in a world of pain ever since. So looking back, some of muscle-skeletal pain might have been sensory nerve issues. It's hard to parse out. :(