New MI Member on the Forum

Here you can introduce yourself and give an account of your medical history, visits to physicians, results of treatments, etc.
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Muscle Car55
Posts: 39
Joined: Fri 9 Nov 2012 23:51
Location: Michigan

New MI Member on the Forum

Post by Muscle Car55 » Sat 10 Nov 2012 1:11

New member on the forum, been a lurker for quite some time now. Got diagnosed late last year in 2011 at IGeneX after false-negative with Eliza, been treating with antibiotics, vitamins, herbs. Big hobbyist with fishing, bodybuilding, muscle cars, webmaster. I'm sure you can tell which hobby did me in. Went undiagnosed for about 1 1/2 years maybe 2.

Anyways just wanted to sign up to share the new New SpiroFind Test on the forums, test might be bogus but I thought I'd share the article. Thought I'd introduce myself too...

Everyone knows how much stress this puts on your family and yourself, always had a well-balanced mind so I'm just dealing with it plain and simple.

First three months I treated with Doxy and amoxicillin by my osteopath, at times I just had burning in my wrists, headaches, head pressure, food intolerance, and dizziness/vertigo. At the time I was still able to do walking on the treadmill. Gluten-free dairy free diet took away the headaches and high-pressure.

Decided to switch to a supposed LLMD covered by insurance, treated me with Biaxin and Ceftin. Fourth month I started having burning in my ankles, it was obvious that treatment was making it worse as many people say. Fifth month Felt like I was getting better, but then by the six month it took a turn for the worse and couldn't really do cardio on the treadmill anymore because my knees were hurting/burning along with my ankles. Dr. seem old-fashioned and I thought wasn't up-to-date with treatment, he put me on Keflex, antibiotic not used to treat Lyme.

By the seventh month, the third LLMD that I was on the waiting list for freed up so I took the appointment. He supposed to be the best LLMD in Michigan. Put me on Zithromax, plaquenil and Omnicef for two months. Now I'm on Zithromax, flagyl and Malarone. LLMD suggested that I might have babesiosis because of heavy breathing sometimes. And the sore throat, fatigue, and dizziness I got when I'm on Malarone. Other than that I don't really have babesiosis symptoms, although many say if you have a strong immune system year not going have much.

I decided to throw in the natural herbal antibiotics that Dr. Horowitz suggests: cats claw, crypto, Stephania, Japanese knotweed, and Allicin. Doing some enzymes Natto & Serrap too for the hell of it, but skeptic on what some say eat biofilms, doing it anyways. Input EDTA every so often too now. Also doing curcumin for inflammation. Have they made a difference for the good, not sure, but I'm definitely feeling worse than I've ever felt being on the herbs and antibiotics. I'm very cautious on all the hogwash about the alternative treatments with Lyme disease. I know that herbs have natural resistance to bacteria so I go with them. The other stuff such as rife machines and other stuff I'm pretty skeptic, don't have the money to waste on that stuff anyways.

My main problem now is the inflammation, none of my other symptoms don't even compare. I have inflammation in my fingers, wrists, hands, ankles, knees, shins, and elbows. My ankles and hands are the worst though. I'm still able to walk around and cut myself dinner, walking/ working out on the treadmill is out of the question now. I'm starting get numbness in my hands and other parts, thinking the flagyl might be causing these different inflammation symptoms, many say this drug hits the disease the hardest.

I probably shouldn't be using the computer had already now because it makes my arthritis so much worse when I use the mouse, I'm actually using Dragon speech recognition software to type this up. But it gets boring watching TV all the time.

I think it's been about 11 months, possibly a year in treatment. Sad to say, haven't got any better. I'm gone from just burning wrists to burning everything. I also can't sit down because of the burning in my hamstrings, which is probably the infection or co-infection affecting the sciatic nerves. I understand that the inflammation could be just my immune system going after the leftover debris from bacteria. I've read a lot, pretty much all there is about the disease, still keeping update when I can.

Anyways hoping that 2013 going to be a better year for me and I'll be able to get out on my city Lake, definitely not fishing on the inland lakes anymore in Michigan. I think they are breeding grounds for the disease.

As some say, bacteria either goes your joints or your head(neuro). Well it's definitely gone to the joints for me. This is a tough disease it do with physically and mentally, I went from being a natural bodybuilder being able to lift over 300 pounds on bench, now not lifting weights at all, and having a hard time lifting a frying pan in the kitchen.

It looks as though things could be changing in 2013 for the disease with the recent work of Dr. Sapi Dr. Macdonald, Time of Lyme, etc... And hopefully it is, but I still think we're at the tip of the iceberg. If we get a more accurate diagnosis, that will definitely help future people from going chronic, that's great and groundbreaking. But the treatment for biofilms, other morphing stages of Lyme and where it hides out is going to be tough for us chronic Lyme disease patients. Then there's the lingering symptoms, possibly from autoimmune. I just hope that change happen soon.

I appreciate Dr. Macdonald work and it's great to see him on here, along with other ILADS doctors and other scientists working on the disease. It was great to hear Tom Grier on Coast to Coast AM when he did.

Camp Other
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Re: New MI Member on the Forum

Post by Camp Other » Sat 10 Nov 2012 8:19

Hi Muscle Car55,

Sorry you've been going through this. It sucks. I know about my life pre-Lyme and after, and I know where I was when I got bitten more or less - during a hike one sunny afternoon. It's been a rollercoaster of symptoms ever since.

Reading through your description, it does sound like your complaints are primarily muscle and joint related. What really stands out for me, though, is your mention of burning and numbness. Other than shortness of breath, has there been any other symptoms which consistently cycle through?

Have you been tested for any other conditions which could cause your symptoms just to rule them out? Burning pain is often associated with nerve pain or nerve damage. It can also be inflammation. It might help to see a good neurologist just to make sure nothing else is going on just coincidentally.

One thing I think about when I look at the polypharmacy you have, I have to wonder how your body would respond if you took a drug holiday? I mean, you feel crappy now, and whatever you are doing now isn't helping much and you've gotten worse overall - to the degree I'd wonder how you'd feel if you stopped taking everything and saw how your body responded to the change? It can be educational in knowing where your baseline is and then if you decide to try anything from there - then only take one or two things at a time for a longer period of time and seeing how you respond to those one or two things before changing anything. That way you can separate the benefits and side effects for each item you try more easily.

It is useful to also familiarize yourself with the side effects of all the drugs you have taken and read online about which side effects other patients also report that are not listed on the official pharmaceutical company insert that either comes with the bottle/package or is on the company web site for that product. What happens in the population at large can be different from what happens in clinical trials.

Thinking back on your burning pain and other symptoms: Have you tried any OTC anti-inflammatory meds and what did they do for you? Something or nothing? Have you changed your diet to reduce inflammation and played with removing the most common allergy inducing food including gluten? Some people experience a measure of relief from cutting gluten - followed by sugar and dairy. Have you tried any drugs like Lyrica or Neurontin or low dose amytripyline? If not, you might want to talk to a doctor about them and decide if they are right for you as they have helped patients with some of your symptoms. (I can't recommend LDN yet, though I am looking into that.)

All of what I say here is not medical advice, it is just informational. Please discuss your treatment with your doctor.

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Muscle Car55
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Location: Michigan

Re: New MI Member on the Forum

Post by Muscle Car55 » Sat 10 Nov 2012 17:29

Camp Other wrote: Reading through your description, it does sound like your complaints are primarily muscle and joint related. What really stands out for me, though, is your mention of burning and numbness. Other than shortness of breath, has there been any other symptoms which consistently cycle through?
fatigue and vertigo
Camp Other wrote:
Have you been tested for any other conditions which could cause your symptoms just to rule them out? Burning pain is often associated with nerve pain or nerve damage. It can also be inflammation. It might help to see a good neurologist just to make sure nothing else is going on just coincidentally.
My second llmd checked for coinfections, nothing showed up, he just use basic labs not Igenex. He did do some testing that showed little bit of elevated metals in my blood, but I took care that a while ago. But before that an IDSA infectious disease doctor did some testing other than the false-negative Eliza, parvovirus showed.
Camp Other wrote:
One thing I think about when I look at the polypharmacy you have, I have to wonder how your body would respond if you took a drug holiday? I mean, you feel crappy now, and whatever you are doing now isn't helping much and you've gotten worse overall - to the degree I'd wonder how you'd feel if you stopped taking everything and saw how your body responded to the change?
I did that three months ago, didn't help, went of abx for three weeks. Symptoms such as fatigue and little bit of shortness of breath started ravaging my body. Probably gonna try again after a few months. My llmd concluded that this is probably a coinfection, since symptoms started so quickly after getting off the abx.

Camp Other wrote:
It is useful to also familiarize yourself with the side effects of all the drugs you have taken and read online about which side effects other patients also report that are not listed on the official pharmaceutical company insert that either comes with the bottle/package or is on the company web site for that product. What happens in the population at large can be different from what happens in clinical trials.
I hear you, there are so many people thinking that every symptom is a herx, chances are some of the symptoms are side effects from the drugs.
Camp Other wrote:
Thinking back on your burning pain and other symptoms: Have you tried any OTC anti-inflammatory meds and what did they do for you? Something or nothing? Have you changed your diet to reduce inflammation and played with removing the most common allergy inducing food including gluten? Some people experience a measure of relief from cutting gluten - followed by sugar and dairy. Have you tried any drugs like Lyrica or Neurontin or low dose amytripyline? If not, you might want to talk to a doctor about them and decide if they are right for you as they have helped patients with some of your symptoms. (I can't recommend LDN yet, though I am looking into that.)
NSAIDs didn't work at all. Did Neurontin four months back, helped take the edge off a little bit. But I've read horror stories about people that get hooked on them. And side effects such as torn up stomach and intestines. if you plan on doing long-term antibiotics, taking these in combination are not the smartest thing to do. I read so many people not being able taken a abx anymore because of their stomach problems. Completely cut out gluten and dairy, processed sugar too. Prevents headaches and head pressure that's it. I also don't like taking painkillers too because they mask your symptoms and it's hard to tell whether or not you're getting better.

But I'll tell you this, if the pain gets any worse I might be going back on Neurontin.

Really appreciate you taking time to read my story and trying to help me. All I can do is just keep trying different things and hope for the best.

going to look into that amytripyline

dorothy de kok
Posts: 64
Joined: Fri 2 Nov 2012 15:03

Re: New MI Member on the Forum

Post by dorothy de kok » Sun 2 Dec 2012 9:04

Hi MC

Now I see why you were interested in the ashwagandha. Do give it a go.

Keep pushing through, and don't everdo the abx.

All the best

Dorothy

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