posted
Hi I wanted to share my story real quick here,and ask for some insight. I am a 48 year old male very active athletically. Ride bicycle on average 140 miles a week. I own an auto repair business where I work 5/12 hr days. All this is normal,I am/was healthy and strong.
On May 2nd 2017 I was bitten by what I thought was a spider in my sleep (lower bicep). I am allergic to insect bites and am very prone to getting bit, it's been a part of my life since I was a child.
At the bite was a small raised pimple and through the next two weeks only a dime sized red welt,that only itched in a hot shower.
May 17 nothing had changed with the welt so I decided to experiment and itch it to bring blood to the surface.
May 18 was very sunny and I had the day off so I applied sunscreen and went for a 60 mile bike ride. Thats when I noticed the rash began looking like a bullseye.
May 19 went in to see family physician, blood test and 10 days of Doxy. May 23 Lyme tested negative. In 3 days the bullseye rash disappeared.
Now what led me to realize the Lyme has set in has been my performance on the bicycle. I use a Power meter (which very accurately measures the power output while pedaling) and an heart rate monitor and a very accurate program called Training Peaks that compiles all of my data.
Now normally during any given week of training you have ups and downs between Form-Fitness and Fatigue. You monitor these and learn how best to approach your Cycling goals.
I noticed through these stats and the way I felt riding that something was wrong, through the next 5-7 rides my heart rate was not able to reach its maximum of 174 bpm that I was used to,
For example climbing a large hill I would be able to use my whole range and get up to my maximum without too much trouble. Now I couldn't even get past 155 bpm without "running out of gas"
So here is where the Lyme Fatigue is showing itself. During my 12 hr work days I feel absolutely fine, but when I get on the bike its like it is the first ride of the season and I have well over 1,000 miles in so far.
June 1st is when I come to grips with these facts,and the research begins. (I wont be able to get to my Doctor until next week)
I stumble onto Dr. R site and his description and understanding of Lyme. He mentions Buhners book so I order that Amazon Prime as well as take a look at his Herbal Protocol.
I wanted to start some form of Herbal treatment as soon as possible.
Obviously all this has happened within a months time I am likely lucky I caught it so soon.
So the canary in the coal mine is the physical exertion when I ride, maybe if I wasn't riding it would have taken longer for my body to succumb to the symptoms. Or am I just "Herxing" from the Antibiotics??
Should I continue on the Doxy? If my blood tests had been positive the Doctor said I would be on them for a longer period of time. So I assume he will throw me back on Antibiotics.
Is it prudent to be proactively taking this Herbal Protocol and continuing self treatment? What I can extract from Buhners book is that I should.
Your experienced help will be appreciated.
Thanks so much for reading
(breaking up the post for easier reading for many here)
posted
Welcome to Lymenet! PM sent for OH, PA & MD.
Lyme Disease is a clinical diagnosis made by a Lyme-literate doctor (LLMD) based on medical history, symptoms, test results, etc. You can test negative and still have Lyme.
You should be tested through IGeneX Labs in Palo Alto, CA. They specialize in tick-borne diseases.
Ten days of antibiotics is nowhere nearly enough to treat Lyme disease. 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!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Also, we communicate via PMs (Private Messages), not e-mail. I would recommend you remove your personal e-mail address from your post, because this is a public forum with all sorts of people on it.
You should not use your real name, if in fact you are, as your username and in the text of your post. Read this link about it:
posted
Thank you Hiker53!
Posts: 2 | From Ohio | Registered: Jun 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Al, just know that hiker must have an exceptional doctor. Most docs will NOT agree to testing through Igenex lab and will not have their staff draw the blood and prepare it and send it to that lab.
It all has to do with the "2 camps" in the medical community when it comes to lyme disease. This is also known as the lyme disease controversy.
Contact Igenex and find out how the blood has to be shipped. Get it drawn on a Monday or Tuesday. Then, see to it that it is shipped as instructed by Igenex, even if you have to do it yourself (which you likely will).
Doctors' offices are used to setting their samples out in a box and the lab coming to pick them up whenever.
This doesn't work if you want a good lyme test. So, find out where the local FedEx is and be prepared to drive your blood to their main office if necessary.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
If you're going to do doxy, you need 200mg 2x/day for 6-8 weeks. Most doctors don't know this, but we do! You could also ask for referrals to a Lyme-treating doctor in the Seeking A Doctor section and people will help steer you.
Tests don't necessarily come back positive for Lyme, so people get treated clinically by history and symptoms.
For your fatigue, you could try taking magnesium - it's what gets used up by the illness. There are several forms of it, and we find out which form we do ok with. I also lived on flower pollen in the beginning of my sojourn with this, as an unknown condition to me then.
There are Buhner groups online who discuss the herbs, so perhaps you could find one.
Also, it's best if you don't use your real name here, as this is a public board.
Posts: 13116 | From San Francisco | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
If you continue on doxy, please be WARNED that lyme docs generally do not prescribe doxy in the summer due to its interaction with the sun. It makes the patient very sensitive to sunlight.
If you go out in the sun while on doxy, you could end up with the dreaded doxy burn. This is a chemical burn, not a regular sunburn.
You will not see yourself getting red or anything. But, then, after being in the sun, you will feel like your hands are being held in a blowtorch.
Even narcotic pain meds cannot stop the pain. It will last about a month. You will not be able to put your hands in cold or hot water, only lukewarm water. The pain, once you get the burn, will be set off again by even 2 seconds of sunlight. You will not even be able to tolerate sun coming through a skylight.
I had this burn. Believe me, you don't want it. So, if you continue on doxy, be sure to wear light cotton gloves while driving, do not put your arm out the window, and totally avoid sunlight. Some say you can even get burned in the shade on the beach.
The hands are most vulnerable to this chemical burn, I guess because the med gets close to the skin in the hands.
Once you get this burn, you may see tiny blisters appear a day or 2 after the sun exposure.
Because this burn can be so severe, most lyme docs switch their patients to some other med for the summer months.
Also, to preserve your stomach, lyme docs instruct their patients to take doxy in the middle of a full meal. That means eat half the meal, take the doxy, and then eat the other half of the meal.
If you try to take it on an empty stomach, eventually you will be nauseas, vomiting, etc. So, you must take it as above.
Also, don't lay down for at least 30 minutes after taking the doxy. The reason is that if the doxy comes back up your throat, it can burn it and that can be a severe burn.
Posts: 9931 | From Maryland | Registered: Dec 2007
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