LabRat
Frequent Contributor (1K+ posts)
Member # 78
posted
Seems nothing is ever lost on the internet, I found my post from 2000 and I�ll repost it here now. This got me through the worst of my lyme, you may find something you can use at your own risk.
Hi, Hope I can help you through my experience. I've had Lyme for about three and one half years and have been on treatment about a year and a half. My wife's a Dr., which has been a big help. I've been to many doctors and no one seems to know anything about Lyme and was finely dx by my wife. Drs are very divide and most are very reluctant to treat. There is fragmented information out there but most is of a research nature and unless a Dr. has Lyme he probably won't spend the time required to research very much. My symptoms started with sore and stiffness throughout my whole body "tendonitous" of the right elbow. Next the same type of tendonitous pain found its way to my right thigh (upper) and crotch area. Before long the pain left the crotch area and presented itself in the whole thigh muscle from hip to knee but not in the knee. Trying to explain this to my wife made no sense to her at all. I had plenty of strength but couldn't exert it due to the pain in the muscle. Next the pain traveled to my hips followed by a pain in my right lowest rib. Now this sucker hurt! Time to do x-ray, mri, bone scan cat scan and blood work. There was nothing exciting except a slightly elevated sed rate that was put down to a pet tooth I had been nursing for some time and a very low number of natural killer cells and an over abundance of T cells. Can't fix what you can't find! Starting sleep problems. Couldn't lay on my back nor sleep on my sides, as shoulders were becoming sore and tender. Had to sleep in a chair. Different aromas would cause incapasiting headaches. No energy, hurt to move, not interested in anything going on around me, snapping out at my poor wife, some memory loses, (short term at first). Then one day I couldn't find a P.O. box I'd had for twenty years. I didn't tell anyone about that for awhile and it drove home to me that I had a very serious problem. I kept blaming my problems on getting old and clumsy with vision problems now and again but was beginning to think, (and thinking was getting harder much less concentrating!), maybe it's not just old age. It was coming to the point that I could not think for myself nor could I effectively communicate with my wife the problems I was having. One morning my wife saw me using both hands to comb my hair and said ok, we have to get you some help! I went to a high dollar hospital with a good reputation. They ran a battery of test and told me to come back when it really got bad! Next my wife though perhaps I had CFS and we went to Houston To visit a Dr. there. This Dr. worked mostly with AIDS patients and immune system problems and the like. I did receive some treatment there that was of short-term help. My right knee by this time was sore and tender to the touch, very, very painful! My right foot began to swell and movement became even more difficult. The second toe swelled even more and became cherry red and claw like. My wife saw that and said you have Lyme. A blood test the next day came back positive for one but the western blot came back negative. My wife called Houston and was told,"you have to go with what you've got", so the decision was made to treat for Lyme until someone came up with a better idea! I had a venaport installed in my chest and started IV Rocephin, for six weeks with little or no improvement followed by Doxycycline for one week then had to abort. (too hard on vains) Went back to Rocephin for another five weeks. Almost no change but some slight improvement. Venaport slip out of vein and had to be removed. Went to oral Zithromax 250mg three times a day. This was followed by oral Doxycycline, don't remember strength and again only slight improvement. There were a few more drugs and events but you've heard enough. I was about ready for a hunting accident! Some of the fog in my head had lifted a bit and my wife and I spent a lot of time on the net and decided on another course of treatment since we wasn't getting very far very fast. Borrelia Burgdorferi apparently is kissing kin to Syphilis so my wife said lets treat it like late stage syphilis, that would be 2.4 million units of Bicillin LA once per week. We read about these sprirocete being able to change into cyst when abx hit the blood stream. They would remain as cyst until the climate became more hospitable, then they would come out and re-infect hence Chronic Lyme! Some folks discovered that Metronidazole, (Flagyl), would prevent the change to a cyst and would kill cyst. We fished around and decided on 500mg twice a day. We started the 17th of Aug and noted improvement almost at once!! we continued for six weeks before taking a break of one to two weeks from the abx and also I run test for body functions, liver etc;. we decided not to stop the abx ever again till six months after the last symptom leaves as some ground was lost on these breaks from abx. Since we started my mind has cleared twice, once during first week of Bicillin and Flagyl and again on the third week. At this moment I feel pretty normal with the exception of my right knee is improved but not repaired and my right foot is way down but still slightly swollen and I have some pain there. I have cleared brush with a chainsaw in 100 degree heat since starting the Bicillin and Flagyl, the two cheapest drugs I've taken in the last year or so! This combo works very well together. A day or two after a Bicillin shot, my knee and foot is filled with activity and is very tender and painful for about two days and then continues to improve. Should you decide to try this here's a couple of tips. The Bicillin will come out of the fridge and be cold. Hold the bottle in your hand till it warms up. It's normally injected deep in the butt muscle, this isn't as bad as it sounds-but-two out of six times my wife has hit a nerve-that doesn't hurt all that much but what will be unnecessarily painful if you try to push the Bicillin in on top of a nerve. If this happens the pain will be a shooting type pain. Just let the Dr. know he is on a nerve and he will pull the needle back a little. Normally all that is felt is just a slight dull discomfort as the Bicillin goes in, Not bad at all really considering the size of the shot. That just about brings you up to date on me! If you decide not to follow my lead, you won't hurt my feelings at all. If you do, I'd like to know if it helped. Post here for me and others to see! One last tip, for joint and muscle pains,(inflammation) try Indomethacin 75mg as needed up to three times a day and try to get those that are made by EON LABS. (try Walgreens)They won't turn you into a slug, the other brands will for a couple of hrs. While your using that you MUST,MUST take Prilosec about 20mg per day to protect your stomach from the Indomethacin and it will also help your stomach while taking the Flagyl. If you should for some reason take oral Doxycycline you'll have to come off Indomethacin and Prilosec and go on Celebrex for the inflammation .(200mg x 2 per day). BTW I've tested for lyme every six weeks this past year and all of the test have come back negative except for the first one that was (sort of) positive. We treated for lyme test, then we treated for Sed rate, then for low natural killer cells and lyme symptoms. We plan to treat for six months after the last symptom disappears. I hope this posting will prove useful and give you some ideas, no need to reply. Good Luck -Don or LabRat
UP Date July 25,2000 have had to date 20 IM shots of Bicillin ranging in size from 8cc to 11cc and now take 1000mg of Tinidazole three times a day. My knee is repaired and rebuilding strength in the muscles around the knee. My foot had received damage, I have holes in the bones of my toes and still have some minor swelling and some pain, sometimes but by and large I'm almost symptom free and can function normally. I had for the last month or so been soaking in a hot tub with the temp around 107 degrees for up to about half an hour. This may have helped but didn't hurt in any case. Symptoms that I had become "comfortable with", like sore shoulders are steadily waning and disappearing. I have given thought to stopping abx on about three occasion as I would think I was well enough. Something told me, go a little longer, I did and improvement always followed! For awhile I never remembered a recent time that I was not in pain or able to think clearly. This became "normal" for me. I didn't hurt as bad today as I di d yesterday, there fore I was better! The problem most of you will face is being cut off abx by your doctor. My wife gives me anything I want and will not cut me off abx but she cannot believe that I have any sort of bug that has survived everything I've taken! My improvement is the only proof I can give and she accepts that. She would never treat a patient with the same dose of abx as she gives me and there in lies the problem you will face. Your doc. may be timid,(covering his axx wisely) giving you smaller doses of abx, causing this illness to be drawn out or declaring you "healed", too early, so in a few months your in the worst shape ever! There is a possibility that you may have to take abx the rest of your life, I don't think so but be prepared. With this in mind, you should be prepared for the day the doc. says your healed, now **** off. About the only thing I can think to suggest is be prepared to ride the bus down to Brownsville, Texas, go across the border and stock up on any abx you want. Sustaina bility is I think, going to be a key consideration in this battle. If you allow the docs to whip-saw you on and off abx, I think your doomed!! I think it's imperative to have access to abx, no matter what you have to do to get them. You don't have to have a LLMD, but of course it doesn't hurt. I've seen and talked to people who were reluctant to start treatment, why? Well, the test are not reliable or I'm going on vacation and I don'' wanna have a herx then. That's a good one! You have to fight this bug while you have a mind to use, otherwise you will become totally dependent on someone or some doc that trying to fire you!! You must have a plan that you can follow with out thinking very much because as your symptoms increase from the die off due to abx, you'll be pretty close to helpless. It's more than a little interesting that in the land of the brave and free we have to have a doc's ok to buy abx where as the poorest peasants of Mexico have it available if they can afford it! I guess nothing is perfect. Good Luck!
Posts: 1887 | From Corpus Christi, Texas | Registered: Oct 2000
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