posted
posted 12-22-2013 03:01 AM -------------------------------------------------------------------------------- Wow I can't beleive Im here doing this.
6 months ago I was a the peak of health. I open MMA gym trained Dayly.
all of the sudden wham. Problems. first I got tested for stds. I was clean which surprize me cause I has the sysmtoms.
Then diagnosed with epiditimitis,
next with prostatitus.
I was satified for that time but still lots of unexplained sysptoms. Jaw poping, Burn when I drink Alcohol, back pain. meningitis neck ache.ext.
I have been to DR like 10 times in 6 months.
so, next I was sure I had hashimoto's disease. got all tested. tyroid was normal. I told Girlfriend I was sure i had it. I lossed some creibility
That night I got home from being tested I broke out in rash. check rash sysmtoms also eye was red and droopy.
looked into lyme and found the check list reads like my last 6 month. I got half the systoms.
Thinking back I had 1tick on my ankle and pulled it off. got like mosiqto bite with hole in it that iched for 2 weeks maybe. I even said to my co worker "maybe I got a tick head in there cause its been really ichy."
so now I have a tick incedent, a rash, and all the sysmtoms of lyme and my forearm are burning right now.
I called mayo health sys and the got appoint for Jan 2ed. but have not been diagnosed yet.
everything points to Lyme, Please I need some help im scared in pain and people dont seem to understand how much pain im in.
New from today
So today I went back to work. im a screen printer.
My hand were not workinig very well. and lights seem enhanced. And im having inner tembling also funny heart beat, thats about it beside back pain.
This is my question, Im not getting any treatment right now.
I have 27 500mg of amoxicillin in medicine cabnet. I think I should start taking them. Im confused plus I dont have great judgement to start with so. What do you guys think. I have already been on anti-biotics for what I believe was misdiagnoises.
Really I took 4 of them 2 days ago and it put me in great pain.
I read when Bacteria die it leaves toxin in blood so pain is normal for treating lyme.
I know Im an idiot. but should I just let this bug go on killing me? when I have poison to kill them right in my med cabnet?
I really need someone to hold my hand and help me cause im lost.
I live in MN and really want somebody with experiance to be there for me to call when I don't know what to do. Thanks
-------------------- Live to love another day Posts: 32 | From Minnesota | Registered: Dec 2013
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I would search for a lyme literate doctor (LLMD) in your area. You can post something on 'Seeking A Doctor' section here on Lymenet.
Your history and symptoms all point to lyme disease and possibly some coinfections. I would try taking half of the amoxicillin you did the other day (500 mg twice a day) until you can get in to see a LLMD.
You might have been herxing when you took so much. If the smaller dose makes you feel poorly, try squeezing a lemon in some water and drinking throughout the day (can add stevia). Also Alka Seltzer Gold can be soothing. Epsom salt baths as well.
The mainstream doctors do not understand chronic lyme and the treatment you would get at Mayo is likely to be very limited. An LLMD will continue to treat you until you are well. Unfortunately, that could take a while with this illness.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
posted
Also My Wonderful Partner of 15 years has not been feeling well either. We have been having unprotected sex and im worried that i could of introduced this bacteria to her. If its like syphillis why couldnt it cork screw in to her body some how?
-------------------- Live to love another day Posts: 32 | From Minnesota | Registered: Dec 2013
| IP: Logged |
posted
Hughmn40, I won't directly advocate taking Rx antibiotics without an active script for your current situation.... But I will share what I did about 4 months ago.
I was sick out of the blue in the late summer and by the 4th day I knew things were wrong enough to go to the doctor (my PCP). They tested me for a bunch of things including strep throat (instant test was negative). I took a flyer and made them run a Lyme test. In the days after that appt, I did not get any better and I managed to convince myself that I had some sort of latent strep infection that wasn't picked up on the instant test. Mind you, I had no sore throat... but the PCP said that can happen with latent strep.
I had an unused Amoxicillin script leftover from a ligament surgery. I figured, what the heck... I'll take these over the weekend while I wait for the results to come back from the array of blood tests to come back from LabCorp. I had little hope it would help, but figured the downside was limited given how crappy I was feeling.
I was shocked at much it helped me and even more shocked at how quickly it helped me feel better. 12 hours after the first pill, the chills and malaise that dominated me for the prior 3 days just evaporated. By day 3 on the Amoxicillin I felt completely normal again. I only took it 2x per day... usually about 1 hour after a meal.
The speed at which I got better reinforced my delusion that it was some sort of Strep bug. I took it for 7 days and declared victory. The shock came 2 days after I stopped when the doc's office called and said something was off with my Lyme test. I was positive, but not CDC positive. They told me I was good to go since I was feeling fine and already took amoxicillin. Then the research journey began.
I called them back and persuaded them to prescribe me doxy. In parallel, I sought out an LLMD in my area (an hour away) and booked an appointment with them. I also got on the appt cancellation list to try to get in sooner. That is one thing I will specifically recommend. I remained on the doxy while I awaited my appt date with the LLMD. Subsequent testing (Igenex Lyme, Fry, etc) provided a much clearer picture of what I needed to do for a comprehensive treatment plan. It's been an interesting journey, particularly because I've felt normal since Day 3 of the Amoxicillin.
Make it a priority to get treatment and find an LLMD. Your PCP can run the LabCorp test in the meantime and can likely give you a Doxy Rx given your symptoms. Local PCPs in my area are permitted to write Doxy scripts based on tick bites, rashes and other symptoms. You will likely need more than that, but its sounds like you are in the early stages given the recent tick bite and rash. Treatment now can be very effective.
Best wishes!
Posts: 58 | From Virginia | Registered: Nov 2013
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Keep in mind that lab testing is very flawed and false negatives are common for Lyme.
Igenex is the best lab to test through.
Lyme makes it difficult (or impossible) to process alcohol correctly. A lot of people with Lyme can't tolerate it.
I had to take an old script for antibiotics while waiting to see my doc.
I'm horribly allergic to amoxicillin, but that's unusual. People tolerate it quite well usually.
Take probiotics 2 hours away from the antibiotics to repopulate gut flora so you don't get the runs.
Get on the cancellation list of the local docs and I'd even suggest seeing a doc a state over from you if you can get in sooner and get transportation.
May seems like a long way off and it sounds like you're still catching this early. I hope you can get in to see someone soon or at least get some antibiotics to beat this back til you see someone.
Some people go to urgent care clinics and say they had a tick bite and a bulls-eye rash to get antibiotics. They say that they now feel like they have the flu and can't shake it. This may be the fastest way to get temporary treatment.
Here are some links that helped me at the beginning:
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Hugh,
Yes, it sounds like lyme could be a major player in why you've been feeling so awful, and also why your tests for other things have come back normal.
Mayo? Bah humbug.
Maybe if you get a positive ELISA (good luck, it runs about a 50% false NEGATIVE rate). Then the docs at Mayo will want you to have a positive western blot as well before they will start treatment for lyme.
After all those hoops to jump through-they will probably give you an inadequate amound of antibiotics and call you cured.
Just sayin'.
The doses they give are based on outdated guidelines...completely inadequate, and they won't address coinfections either.
Best to phone EVERY LLMD and LLND (ILADS trained docs only) in your area and beg to be put on cancellation lists. Beg.
Most lyme docs now don't take insurance, as insurance limits treatment. Make sure to ask about costs when you phone.
Yes, I would reccomend using a condom with your girl from here on out to prevent the accidental transmission of lyme to her. For all forms of fluid exchange (O, A, V doesn't matter, put one on).
Lyme has been found in semen, breast milk, etc.
Whether it transmits easily is still a debate, but it would be a shame to find out the hard way and her to get sick also.
I can't endorse taking abx differently than it has been prescribed either...but I do reccomend going to your nearest bookstore and buying a book "Why Can't I Get Well" by Dr. H. (White book neon orange print and letters on the cover), and looking in the appendix for amoxicillin. It is listed there with dosing and frequency of dosing, and other antibiotics for lyme are there as well.
Herbal Route? Stephen Buhner has a Healing Lyme Book, and a Mycoplasma and Bartonella Coinfection book with herbal route to take. Just be aware that he recommends folks go on abx first to get the worst of the infection.
He does have a herbal combo for recent tick bites, but it sounds like yours (if you have it) has already disseminated.
Some coinfections that come along with lyme from the tick can be very serious. Rocky Mountain Spotted Fever, Erlichia, Anaplasma, Babesia.
* If at anytime you feel terrible, fever, strange rash, strong flu like symptoms, please get to urgent care and let them know you've had a recent tick bite.*
Also seriously...DO NOT drink alcohol. Lyme f**** up the liver and spleen. So one drink to a lyme person is like a 2/6 to a healthy person. Really really hard on the liver and spleen and kidneys.
I'm sorry you are going through this. Until one finds an LL, it feels a bit like floating on a raft in the middle of the ocean, with no ores.
Hang in there. There are some good folks on this site to help you.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
posted
Thank you all so much I try to forget about my problems for at least a little bit during the day. im gonig to bed and try to focus on something alittle lighter. but
* If at anytime you feel terrible, fever, strange rash, strong flu like symptoms, please get to urgent care and let them know you've had a recent tick bite.*
Just Happened Friday Night. I felt terrible with strange rash and droopy red left eye.
ER Doc said "we can just traet your sysmtoms" and I said "Give me something for belly pain and ill go". she gave me somthing that dosolved in mouth for nausia.
she told me to take benedril for rash. anyway good night and Thanks Again. GretaM, Judie, j77, dbpei.
-------------------- Live to love another day Posts: 32 | From Minnesota | Registered: Dec 2013
| IP: Logged |
posted
Just a little after that tick bit I took 1 drink of alcohol and it burned so bad when it hit my upper chest. it felt like it was absorbing through my lungs and it was so painful i laid down and and fell asleep confused about what had just happened.
I was In the er a week later with mystery symtoms and I told er Doc at Mayo Health system about that incedent. he looked at me like I was weird. I told him I had a very unusal painful burn when i consumed. weird huh thought I would never get an answer to that one.
Also It felt like I was breathing menthol all the time for 3 weeks and I don't even smoke. I was like. "what the hell is happening to me?"
-------------------- Live to love another day Posts: 32 | From Minnesota | Registered: Dec 2013
| IP: Logged |
posted
so today I took 2 amoxicillin, What I am experiancing is. little ichy areas that move from spot to spot. chest, back of shoulders, right above knee, back of arm. when I scratch the spot it becomes inflamed.
-------------------- Live to love another day Posts: 32 | From Minnesota | Registered: Dec 2013
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hugh-are you sure you are not allergic to amoxicillin?
Jan 2 isn't too far off-that's good!
Sometimes shortness of breath can be attributed to a coinfection, or just increased inflammation making you wheeze.
Tomorrow if you have a chance I would google Rocky Mountain Spotted Fever for the symptom list.
It's more common than the CDC makes it out to be.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Watch "Under Our Skin" if you want to understand the issue with insurance companies paying for treatment.
I wouldn't waste your time with Mayo (or go there and know they won't cure you). Even on their website it says:
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hugh,
You have to understand that there are two "camps" when it comes to lyme disease.
The majority of our U.S. doctors have been miseducated by the Infectious Diseases Society of America (IDSA) to believe that:
1. lyme is very rare, and 2. lyme is easily cured by about 2 weeks of antibiotics
The second camp is our lyme doctors. Most of them had lyme themselves and found out the IDSA was all wrong about lyme disease. The lyme doctors know that:
1. lyme is worse than an epidemic, and 2. lyme is very difficult to cure, often requiring treatment for months for an early case and for years for a case that has gone on for years
If you go to a place like Mayo, which is in the first camp, they will treat you like a mental patient. They will say that even if you ever DID have lyme (very unlikely, since lyme is so rare), the use of any antibiotic would have killed it for you.
And, if you still have symptoms after the antibiotic, that is your body still reacting to the lyme. They made up the term "post lyme treatment syndrome" to explain why people are still sick after 2 weeks of meds.
So, you have to understand this medical controversy. If you don't, you will go to lots of doctors and waste your time and money. You will be frustrated and humiliated by these doctors. They do not know all of the crazy symptoms that lyme disease can cause. When you describe these symptoms (like the alcohol, etc.) they will begin to treat you like you are crazy.
We all went through this frustration and humiliation until we learned about these 2 camps.
A Boston TV station did a show on the lyme disease controversy a few years ago. Here is the Boston Chronicle video on YouTube:
I suggest you watch this video a few times. It explains the lyme disease controversy and the role the IDSA plays in making it difficult for a person to get good lyme treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I also suggest that you try to read the Burrascano Lyme Treatment Guidelines. They are found here:
This document was meant for doctors, so it is a difficult read. Still, it will give you your education on the disease that you have.
See pages 9-10 for a list of common lyme symptoms.
Here are a few points from Dr. B's guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires 2 different antibiotics to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections (including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do. He treated lyme for over 25 years, and compiled what he learned so that other docs could benefit from it. Read it in his Guidelines.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Hi guys and thank you for the replys. Today is Christmas Eve. So merry Christmas to very you helpful people.
so I took 3ed 500 mil amox. this morning. I so consistantly feel flu stomach sysmtons from these pills.
right now I believe It to be herxing. it is mild from 1 amox.
seemed to be 2x more discomfort when I took higher 2x higher doeses.
Im 10 mile from IA and 90 miles from Wisconson. so I need llmd for those states.
I score 26 of 46 on lyme symptoms checker and that was putting no for not quite sure.
I have been complaining to my co workers about eyes beening funny and not hearing that good anymore.
At least things are becoming more clear from my prespective.
Yesterday I called Urget care PA that has been helping me for like a week. I got A lyme test yesterday from the Mayo Clinic Health System. Its only 2 blocks from my house and Dont cost me anything cause MA. I have to use mayo to the best of its ability for now til I can get in and see LLMD.
What she could find so far through more than 6 visits with test. that my white cells are very low. and an enzime in my liver.
Thanks and Merry Christmas
-------------------- Live to love another day Posts: 32 | From Minnesota | Registered: Dec 2013
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lyme test from Mayo Clinic a waste of time. They do not do it correctly. And, 2 days before Christmas, the timing could not possibly be okay. It will sit in a lab longer than it should before anyone even works on it. And they still don't do the test correctly.
Mayo is NOT lyme-educated, not lyme-literate. Mayo will NOT be of any help. Sorry. Do not look to Mayo. Find an ILADS educated LLMD.
It's not just lyme that should be assessed, either.
Aside from possible chronic infection, you say that you screen print. The chemicals could be posing a problem for you. Be sure to be ventilated but don't do anything you don't have to with chemicals. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
MINNESOTA LYME ASSOCIATION. They are ILADS educated. They can guide you to your closest support group and to doctors who are lyme-literate -- and to books, articles, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Take a picture of the rash or and IDSA MD won't use it for their clinical diagnosis.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hugh-some of the more nasty coinfections cause a low white cell count.
Erlichia, anaplasma and others.
This concerns me that the urgen care docs you saw are not more concerned about your low white cell count.
Anyways, Merry Christmas
Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
posted
For months I had no Idea what was going on with my health. I felt like i was entering the Twilight Zone. Now Everything fits like a puzzle.
Now the Battle begins. I don't have a Dr. All I have is Myself, This group. And a flood info.
I'm making a plan.
1. Make appointment with LLMD no matter if in March. Figure out how to pay will be hard for me. Never had much money.
2. I'll have to treat myself til then. what other choice do I have? What Antibiotics will I need.
3. I'll have to learn quickly what to eat and drink. I need good info on that.
I can't learn it all at once so most important things are going screwed up by me. I can't even fix my own Car.
Thanks. gonna take 500 amox. now
I also have 20 sulfamethoxazole-tmp. i took 40 of them already for prostititis.
I wonder if i should take them. as well? I think ill take a break. then read 2008 guide lines.
-------------------- Live to love another day Posts: 32 | From Minnesota | Registered: Dec 2013
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hugh,
I want to be sure you see something very important in the Burrascano Guidelines. That is that a person that has or may have lyme disease should NOT take any steroids of any kind.
That includes pills, shots in the joints, etc.
So, if you go to Mayo or any doctor and they give you prescriptions, you must first be sure that what they gave you is not classified as a steroid--prednisone, cortisone, any immune suppressant at all.
You don't want to take anything that suppresses the immune system, period.
Here is what Burrascano says about it:
"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." (page 12)
The Burrascano Guidelines tell you the various supplements (vitamins, etc.) that help various symptoms. You can read through that section and pick out what might help you and buy it and take it.
The Guidelines also tell you the no-nos. Like no drinking, no getting behind on sleep, etc.
There is also a section on diet. Once you are on antibiotics regularly you need to follow the diet rules--called the anti-yeast diet. But it would be good to totally avoid sugar right now since you are treating yourself.
If you don't do this, you could wake up in the morning with a white coating on your tongue. That is yeast (candida) and it will require a doctor's prescription to get rid of it. So, eliminate all sugar and sweets as long as you are taking antibiotics.
If you get yeast, you will feel pretty sick from that alone. It gives you bloating, abdominal pain, etc.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
-------------------- Live to love another day Posts: 32 | From Minnesota | Registered: Dec 2013
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
To avoid nausea and stomach upset, take all antibiotics with food. This is what our lyme doctors tell us to do. If you don't, these meds can really tear up the stomach.
If you still get this side effect, then take the meds in the middle of a full meal. That means eat half the meal, take the antibiotic, and then eat the other half of the meal.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic