posted
I apologize in advance - this will be long as I am going to try and be thorough. However, I would appreciate any thoughts, advice, etc. from anyone who reads.
I've lived in the Columbus Ohio area all my life. Around age 10, I had a tick burrowing into my scalp. I remember mom trying to get it to "back-out" using rubbing alcohol. She eventually got it detached (I think after a few days).
Not sure if it was fully intact. Not sure what type of tick it was. Also around age 10, I started having digestive troubles and anxiety (don't recall if that we before or after tick incident).
At age 19, I was a very health aerobics instructor. One day, I went to teach a class, I was totally fine. After class I went home and napped. I woke very ill with a fever of 103.9 and terrible body pains.
I was sent to the ER with suspected spinal meningitis. It was determined that I just had a severe kidney infection (nowever, looking back, I have had several kidney infections / UTI's and I always felt them coming on. I did not feel anything coming on when I went to the hospital at age 19).
Not long after, at age 19 or 20, I was having more digestive troubles and was diagnosed with pancreatitis. After tons of testing, it was determined to be ideopathic.
I was treated with strict diet, but would have occasional bouts of pancreatitis over the years. Through my 20's, I kept a pretty strict diet and exercised. I was the picture of health to everyone who knew me. I had one period where I lived in an old house broken into rental units and I developed the worst headaches. I believe that house to have had black mold. Once I moved, the headaches went away.
At 32, I became very ill with gall bladder problems. In the process of trying to get that diagnosed, I developed what I thought was the flu, but 4 days later I was hospitalized with another kidney infection. While in the hospital, I developed pneumonia. The good news was that my ailing gall bladder was diagnosed and later removed, the surgeon saying it was atrophied and full of sludge.
Within the years after the hospitalization and surgery, I got married and quit my stressful professional job to become a personal trainer. I was in the best shape of my life at 14% bodyfat (I know, WAY too low for a healthy lady), competing in triathlons and Crossfit competitions.
A few days after a particularly long and brutal Crossfit workout (with 3 minutes left, I felt like my arms had nothing left, but I pushed through), I woke with very swollen and painful triceps. I literally couldn't bend my arms.
I went to the sports med doc and he gave me a short course of prednisone to eliminate the swelling telling me that it's not rhabdo (I believe he may have been wrong, but I didn't suffer severe kidney damage due to always over-hydrating).
I went through months of physical therapy with no improvements when the PT suggested that maybe I had a neck injury. I had once been in a car accident and thought maybe it's now presenting itself from the trauma of a hard workout. The prednisone and injury sent me into adrenal fatigue.
That was 3 years ago. Ever since, my health has been going downhill. I have very little tolerance for exercise, particularly weight training. It leaves me in severe pain, esp. my neck.
I had to quit working because I couldn't handle teaching people how to exercise. I couldn't sleep on top of numerous other problems. I went through numerous doctors until some people convinced me that I needed to ask to be tested for Lyme.
The doc I saw at the time refused to let me take the Igenex test, so I tested using Labcorp's Western Blot. Band 23 came back positive. My doc felt that was enough to treat men for Lyme since 23 is a Lyme-specific band.
We treated with 5 months of antibiotics and I started improving. I was able to start working a fairly active job at a DIY store. I started swimming and using the rowing machine, even did a little light weight training.
I stupidly wanted to see how I would feel off the antibiotics, so when they ran out in November of last year, I went without. I started regressing and with it being cold-season, I caught illness after illness until the flu took me out and seriously crushed my adrenals.
I'm now back on antibiotics - Minocycline 100mg 2x's daily and Zithromax 250 mg 1x weekly. I am REALLY struggling to dig out of the deep adrenal fatigue hole. I struggle to sleep through the night, my blood pressure is always low, if I walk or stand too long, I pay with lots of low back and leg pain and cramps in my feet and calves.
It doesn't seem to matter how much salt I take in. My Sed Rate was very low - I assume that means hypercoagulated blood. Several vitamin and mineral imbalances. Tested for Pyroluria, which came back negative despite an inverse relationship with zinc/copper via serum test.
I am diligent with my vitamins and supplements. Am not taking any adrenal supplements for fear I will make myself worse, not better. Also taking Samento and Banderol as I was taking those last year concurrently with the antibiotics (when I saw improvement).
I have experimented with elimination diets to find no benefits, although I remain gluten, soy, some dairy and legume free (I'm basically on a Paleo diet). I was also recently diagnosed with nasal polyps, but am hoping the antibiotic might clear those up. I really want to avoid nasal surgery! I keep Dr H's book as my Bible.
As you all know, it is extremely depressing to go from being the picture of health to being this ill. I feel fortunate that I am not bedridden, but I suffer depression from time to time that I am only 38 and it seems that life is passing me by. I'd like to be able to mountain bike again, before I become too old and feeble to do it!
Thank you all to those who have read this. I look forward to reading your posts and sharing ideas and knowledge with you.
posted
Brat .. It's really a shame that the doctor gave you prednisone. It will kick start Lyme and make it harder to treat. However, you CAN overcome it. I did!
Do you have an LLMD?? That is a somewhat low dosage of mino if it's not paired with something else. Taking one zith a week won't do much, but it's a start.
You need a doctor who knows something about adrenal fatigue AND Lyme. Most LLMD's would be able to handle that. (maybe not in OH, however)
Your diet sounds really good.. You might, however, want to look into salicylate sensitivity and its connection with nasal polyps. You are eating a diet that is probably rich in sals.
I forgot to mention that you would likely benefit from upping your magnesium.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Welcome! Adrenal problems are common with Lyme, and they are surmountable. A good LLMD will know how to treat both that and the Lyme.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Steroids are contraindicated for Lyme as they suppress the immune system and make the disease worse. Read Dr. B's Guidelines (=gold standard for Lyme treatment):
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course.
If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants."
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
Unfortunately, LLMDs are far and few between. You need to go where they are.
Also, most LLMDs do not take insurance due to the politics surrounding this disease. Read poster TF's explanation about this:
According to Dr. K. in WA, digestive troubles and pancreatitis can be associated with Babesiosis.
First thing would be to get a full workup for all tick-borne infections. In any case, a good LLMD will treat based on clinical presentation - lab results are incidental.
Also, line yourself up with a lyme literate naturopath. They will be your ally, especially if you hit a few false starts with getting to the right LLMD (they are NOT all created equal - I went through 3 before I found one that actually got me better).
Also, make sure you can find someone who is familiar with biofilm protocols so that any antibiotic/antiparasitic treatments can actually work.
Good luck and hang in there.
Posts: 348 | From NJ | Registered: Sep 2011
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I will look into Salicylate Sensitivity further - the brief search I conducted on it shows a lot of symptoms that make sense for me.
I've been seeing an ND, not an LLMD. He seems pretty knowledgeable and works with me on charting my own course of treatment. I have not ruled out LLMD though.
One thing that I didn't think to mention - I have always had cats, many were strays I took in. Is it safe to say that anyone with cats should be tested for Bartonella? I actually haven't thought to tell my doc that I have cats.
Posts: 15 | From Columbus, Oh | Registered: Apr 2014
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
That is great you are using Doc H's book, so at least you have something to work with.
I've never met anyone with just just lyme. There are so many co infections out there. Based upon what you wrote, I'd lay odds you have co infections as well.
You need a good LLMD too. Your ND will miss lyme related stuff that an LLMD knows needs treating and how to do it. I just don't see how you can get well without an LLMD somewhere in the mix.
We have cats and my husband has never shown any sign of bart either from tests or symptoms. An LLMD will know based upon symptoms/tests whether or not you have bart.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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