Lyme Disease

[cat457]

This is for anyone who has lyme.
Are you taking anti-biotics?  If so, has they helped?  And are the meds expensive?

[JaneeJ]

I have been on oral antibiotics (Ceftin helps), IV-Tygacil was only drug that helped, and now on shots of Bicillin LA 1.2 million units twice a week and it has helped. The mistake that is made is coming off the antibiotic that is working before you are in complete remission.  The best advice I have been given was from expert and he said to stay on the bicillin LA 2.4 M.U. per week until I was completely healed and then stay on it for weeks or a couple of months thereafter (I will have to find my notes when I recover).  I was taken off the Tygacil too early by the dr and later the prescription of the bicilllin lapsed and then dr would not extend without seeing me again and her office would not get me in right away.  So there was a "break" in between and when I went back on it, it was not nearly as effective.  It took several weeks to even begin to work.  The best article I read was written by a German dr.  type Lyme and Morgellons and you should find it.  He has ex cellent advice.  If you are late stage, he claims only bicillin LA. at 2.4 million units will work.  He also tells drs. to take you off a drug that is not working. The infection must be treated with a multi-disciplinary approach, especially if you are late stage.  I have also discovered in the past year that we are probably battling chronic viral infections as well and they should  be addressed.  

[bbalex44]

My insurance covers all the antibiotics, but be aware that antibiotics must also be used with proper diet (low sugar, nothing you're allergic to), as well as listening to your body and taking vitamins. I was an idiot who, after my lyme disease was "cured" with all the above remedies, it came back after a very poor diet. It can be cured, you just have to watch yourself all the time

[karolh44]

I forgot to mention that it was expensive because I had to have an inpatient procedure at the hospital, no insurance, where they insert a pic line into someplace near your heart.  Then you will administer the antibiotics yourself.  However, I was in Reston, Virginia at the time and there was a program that helped to pay for it, although I ended up paying for it once I got back to work.  So you can probably find some kind of program if you don't have insurance.  After the antibiotics you may start feeling better and it will just be chronic, just have to be careful not to overdo it.  I've talked to so many people who were even sicker than I was and almost died, and now they're fine, just a chronic aggravation, etc.  

[karolh44]

I was sick for a long time off and on and was checked for Lyme Disease and always came back negative.  However, a few years ago a rheumatologist in Virginia took one look at my swollen knees and asked me if I had been checked for Lyme and I told him yes but came back negative.  He then asked me if joint fluid had been tested for Lyme and I told him no.  So he tested my joint fluid and sure enough I had Lyme.  I took IV antibiotics for a month and slowly got better except my knees still swell.  I am 58 years old, had a knee replacement and now the other knee will need to be replaced.  Also if I work out it seems like my eye sockets and sinus area hurt like I have the flu.  I have to have that nasal spray with cortisone every day or I get sick.  

[jtm316]

Hi cat...do you have lymes as ive finnished2 weeks doxy and 2 month on i still feel bad. My doc has said the doxy would have got rid of lymes. Would 2 weeks doxy be enough?

[Pussywillow]

You may want to check out this website http:cassia.org also you may be able to do the QRIB which is done by Bowen Research in Florida  #863-956-3538. A fellow who suffered from Lyme disease recommended this.

Cheers

[Truthfinder]

Good luck getting any answers from Mayo Clinic in AZ.  They told me I had Fibromyalgia in year 2000.  What I REALLY have is Lyme Disease, but didn't find that out until a year ago.  Lyme Disease never even entered the conversation at Mayo.

Come on over to the LymeNet Flash Discussion forum to learn more.  I think you owe it to yourself to at least pursue the Lyme Disease possibility.

[karaokelady]

Hi, I have been ill for 8 months now and unable to get any answers, The only test out of many that came back with anything abnomal was the lyme IgG IgM it came back at 1.09 flaged high. the western blot came back with only the p41 band, so they said it was negative, that I needed two bands to make it positive.
I live in Nevada and am being refered to the mayo clinic in Ariz
Have had alot of head systoms, heart and lose of weight, seizers twice, but nothing found on CT.....heart went low twice, but they said it if fine now.
Any help would be greatly apprecated, as I am unable to drive, or situp or standup for very long at this point, get dizzy and headaches very bad, and a motion disorder problem, if situp to long, down most of the year.

[cat457]

So, your neuro said no way cuz you live in Florida?  Actually, Lyme disease has been reported in every state.
You may want to go to Lymenet.org and search for a LLMD (Lyme Literate MD) in Florida to rule it IN or OUT.

[cat457]

Thanks, Ihatepvcs!
I will try that approach with the doc.

[ihatepvc's]

Symptoms were in this order:

Unusually bad headache
Shooting pain in thumb
low grade fever
Returned headache, severe and prolonged (several days in a row)
Stiff and painful neck and shoulders
Swollen Glands
TMJ
Sore Throat
Achy joints
Intermittent but frquent back spasms

Sounds like you're on the right track with the Iginex testing. Maybe you could get on antibiotics under a different diagnosis and see how you do until you get your test results.  Remember you will most likely have a worsening of symptoms before you get better. If you ask your doctor for a trial of antibiotics,  most likely they will help you out. Good luck to you!

[rudyk]

hey i live in florida so neuro said no way lyme. but my symptoms are so consistent.  started with feeling crummy for about 3 days leg paindown back of calves and bottom of feet. moved to thigh and pelvic pain then shoulder and arm pain over a 1 1/2 week period./  some tingling in toes and wrists.  had weird insect bite on shoulder .  pcp confirmed . insect bite) now weired itchy rashes that come and go along shoulder blades and stomach.  pain that radiates from neck and shoulders down arms, comes and goes with flu like leg pains in legs which also comes and goes.  full physical and blood normal.  second set of blood including esr and crp normal.  neuro exam completely normal, diagnosed with post viral syndrome.  my kids were quite ill with virus when symptoms started.this has been going on for almost 3 months!  also my daughter and i had bout of stomach flu and my son and i shared a cold/sorethroat and symptoms elevated for a day both of those times.  i live in a very swampy area and have gotten some bad bites over the past few months while walking dog.  tons of deer around here.  what do you guys think??  p.s. i am a 46vyear old female.

[cat457]

Haven't been tested yet for Lyme... starting to rule it IN as a possibility... M/S, ALS has been ruled out by my doctors  and they are baffled. Of course, I won't know for sure until I am test.  I have been to lymenet's discussion room and found that a lot of Lymies have had significant weight loss like myself without even trying... and sore hip joints (this comes and goes)... stiff neck, back near shoulder blade pain...
I have had pain that parks itself in one part of my body then later it moves to another part of my body.
Ihatepvc, can you tell me what you're symp's were?
My Kaiser Health Insurance doesn't cover lyme, so have to go to a LLMD and then to the IGENEX testing..

[Jenny Wren]

I wonder about Lyme also.  Although back in April when I had my brain MRI it showed excessive sinus thickening so I went on 3000 mg amoxicillin, for 3 weeks, then it still wasn't gone so I took zithromax, for 5 days.  I didn't notice any herxing or anything, just an upset stomach from so much.  I have alot of the same symptoms as you.  I just recently started to take Prozac again about 3-4 weeks ago, it has made all those strange feelings worse than ever.  So maybe my problem is anxiety because they say sometimes when you first start taking AD your anxiety gets worse during the first few weeks of treatment, and mine definently has for sure. What is your next step with your problems?

[ihatepvc's]

The only time I feel great is when I'm on antibiotics. I don't know about the cost, my insurance covers almost all of it. Do you have Lyme?