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Hi,

I'm sorry for this lengthy post but I've seen a number of doctors now and I'm not sure what to think at this point. If you have a few minutes, here is my story:

(My question is: could my symptoms indicate Lyme disease?)


For the past year (starting in Dec 04) I have been having trouble in my hip Ė basically it hurt especially after activity. At first I thought that it was a result of something I was physically doing at the gym (e.g. the treadmill or elliptical). So I stopped going by end of Dec 04 (and have not returned). Over the next three months it got 95% better because I was taking it easy, however I could still feel a little pain. Then in April 05 I started to walk five miles a day (2.5 to work and 2.5 back from work) and the pain in my hip came back but more sharply this time and I quit walking the 5 miles by the 1st of May. I took it easy but the pain would not go away. I figured that it was bursitis and I swear I hardly did much of anything all summer trying to allow what I believed to be bursitis to heal (I was so unhappy lying around my apartment on absolutely gorgeous weekend days). They say that activity and sitting are not good for bursitis, so I actually stayed in bed on my back for a couple weekends in a row. At work I would slouch in my chair trying to take the pressure off my hip. I swear I did everything humanly possible trying to not aggravate my hip. (Elderly people with canes would pass me on the sidewalk because I was walking so slowly trying to rest it.)

I had in my mind to see a doctor and it seemed like seeing an orthopedist would be a logical choice for the hip problem. But at some point in July I started to notice that other joints were bothering me not just my hip. In fact, both hips and one knee at this point were sore-to-painful. My other joints were randomly hurting me at random times for random intervals. What I mean is this: the pinky on one hand would hurt at, say, 10AM for about a couple hours, making it hard to type, then late in the afternoon the joints in my middle finger on the other hand would hurt for a little while. The next day I might notice that my ankles were sore for a couple hours and later all the knuckles on one hand would be sore. It was "random arthritis" as I called it Ė never will these joints swell up, they are just sore and annoying. I have not been keeping record but I know every joint at one time or another has been hit by "random arthritis". (My hips are in constant soreness-to-pain though.)

So because of this, I decided to see an internal medicine specialist rather than an orthopedist, mainly because there seemed to be a system wide problem rather than just a hip problem. I saw him at the start of September and I told him all that above. He agreed that my hip problem was unlikely to be bursitis because of the duration of time the pain existed, that it was bilateral and given the fact that I had been treating it with plenty of rest and 800mg of ibuprofen three times a day for about 4 weeks before seeing him (Please note: on a reread of this message I want to say that the ibuprofen does, in fact, help me control my hip pain to a large extent and it will also make my "random arthritis" largely disappear. But as soon as I stop taking ibuprofen (because it burns my stomach) everything comes back and my hips become sore-to-painful). So the internal medicine specialist ordered some blood tests, which I have in front of me now. Itís a little hard for me to interpret all of it but here is what is in bold:

ANA Screen = Positive, ABN
Lyme Disease Screen = 1.33, H
Lyme Disease Interpret. = Positive, ABN

Lyme Disease (IgG), WB 41 kd (IgG) band = REACTIVE, ABN
(However, bands 18-39 and 45-93 are Non-Reactive)

I believe H= High and ABN=Abnormal.


So, the internal medicine doctor stated that he was not sure what I had because if I had Lyme many of the other bands would have reactive results.

Last week I went to see a rheumatologist. I'll keep it short: She was nice and listened to my story above. Then she wiggled and twisted my arms, legs fingers and toes.

Also, I had her listen to my heart, which she said sounded fine. But, three times the week before seeing her I had a terrific pain right where my heart is and I had shortness of breath during that time. This lasted for about an hour each time. At one point I thought I was having a heart attack but I figured I wasn't because there was no pain in my arm or anything else.

Her conclusion was that I had bursitis for my hips and that I should _ignore_ my "random arthritis" because it does not fit any patterns. She did not say lupus but she did indicate that my "random arthritis" may be the early stages of something and that it was too early to tell. She said the same thing the internal medicine specialist stated about the Lyme test (if I had Lyme more bands would be reactive). She also stated that Lyme usually affects the knees.

So I'm back to where I started. Hip bursitis with "random arthritis". I was willing to accept that but I started to think: How can I ignore my "random arthritis" which is clearly some form of inflammation and simply isolate it from the inflammation taking place in my hips. Why can't the two be related? As for my knees, they are stiff but don't really hurt; maybe that does not fit the _usual_ profile for Lyme but then again many people donít seem to fit the profile. I just tuned 36 last Saturday and I feel that is a little young for arthritis.


Thanks for letting me bother you with this long story. I'm very keen to listen to what you might have to say. I just want my joint pain to go away.

(Interesting side note: The town next to the one I live in is Lyme, CT the place where Lyme Disease was first characterized. So there definitely is Lyme Disease in the area!)
Dear AlbertBean,


Welcome to the board and sorry you have to be here. :wave:

What you have described about the hip pain has been described many times on here. I personally don't have this pain but at one time did have behind the knee pain if I stood too long (like drying my hair).

If you had any bands come back positive I would think it could possibly be lyme. My first suggestion is that you have blood drawn and sent to Igenex in California. You can pull up their website and order the kit. Of course you have to get a willing doctor to draw the blood and it should be done in the beginning of the week so it doesn't sit in the post office for too long.

I was diagnosed with MS 5 years ago when my problems started. It wasn't MS. I don't know why the doctors insisted it was except that is one of the categories in their practice and I believe they had tunnel vision.

Nothing changed for me for 18 months and my GP gave me some valtrex thinking I might have a virus. After 2 pills I couldn't see out of my left eye and felt I had a reaction to the valtrex. Three different doctors pooh poohed this and insisted the eye problem was MS related. I was doused with 1,000mg steroids a day for 4 days until my heart went crazy and I ended up in the ER. As I said for 18 months nothing had changed and my symptoms were 24/7 and MS just doesn't usually do this. Plus I was 52, kind of old for MS to be cropping up.

Long story short I went downhill from there, the reason being that steroids are a nono for Lyme patients. I was tested twice for lyme and only the band 23 would show positive but if you read a lot and find out about lyme the CDC even states that the test is not worth a flip and you should be clinicaly diagnosed.

I went to an Infectious Disease doctor last October and he questioned the lyme but wasn't sure so treated me with IV of rocephin for 9 weeks until my liver enzymes went crazy, from 40-737. Not good. The picc-line was pulled and we tried Doxy but it did nothing. I was convinced this was lyme because while on the IV a lot of little symptoms disappeared. Then most of them came back after we stopped the IV. I believe the ID doctor now realizes it is lyme but he really isn't lyme literate and it is too complicated a disease for an everyday doctor.

I tried to kill the bacteria naturally because I am tired of downing ABX but my husband had a mental meltdown about all of this a few months ago and insisted we go to an LLMD (lyme literate medical doctor). I went to see Dr. Crist in Missouri and he is sure it is lyme and wasn't even going to retest but I insisted. Igenex said I have 4 positive bands and 1 indeterminate. I felt much better about treatment after getting these results even though you should have 5 bands for the CDC to consider you positive.

Dr. Crist and most llmds treat with combos of drugs not just one. Sometimes it is because of co-infections (yes there are 4 of these) and sometimes the bacteria forms cysts around itself to protect it from the antibiotics and you must break these down. I know I have a very long road ahead of me but am glad to know what I am dealing with. I feel I contracted this while in Maine hiking and I live in Dallas. None of the neurologists even thought to test for lyme even after 5 MRIs and a spinal tap that were clear. Finally as neuro radiologist insisted it is not MS.

I have severe mobility problems because of the steroids giving free reign to the lyme and I strongly urge you to do whatever you can to get to the bottom of this. Your insurance may not pay Igenex for testing but it will be money well spent. People have recovered from lyme but the longer you go untreated the harder the fight. I'm sure others will come on here and give you more advice but please do this for yourself. You are fortunate that you have so many llmds there as I have to travel all the way to Missouri. Ticker our resident lyme guru will come on I am sure and give you some of their names. Please keep us posted on your decision and come here for all the support and answers you need. I would probably be crazy by now if I didn't have my fellow lymies to talk to. People, even family just don't understand how devastating lyme is because most of the time you look normal.

Maureen

PS If you want to read my story just punch in my name in the box at the top (Betterdaysforme) and it will bring up my threads. We all have different stories but some may sound familiar to you. The lyme info thread at the top of the boards will tell you how to read the bands if you key on it. Good Luck!





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