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Posted 2/7/2011 6:21 PM (GMT 0)
Tomorrow is my first appointment with an actual and very well known LLMD.  smilewinkgrin

With all of my trial and tribulations these past 3 months (wrong doctors, being too ill to go anywhere, then getting better and then relapsing etc. etc.)  it has taken waaaaay too long to get here!  

The final prompt in making this appointment was my shock in hearing that my infectious disease Dr. who was faithfully treating me (or so I thought) will no longer prescribe me anymore antibiotics at this stage in my progress.  6 weeks is his max.  I guess he's waiting from me to have another relapse ! skull

Been there, done that!   

Will keep everyone posted on how things go with LLMD.   I certainly tell others to immediately see a proper  LLMD when I post here.....so it was time I followed my own advice!

 

Posted 2/7/2011 6:43 PM (GMT 0)
Bet you can't wait, I'm the same but have got to wait another week but that don't seem to bad when I have been feeling like this for 5 months, please will you let me no how you get on cos I really don't no what to expect, how long do you think you have ad it and what are your symptoms. Thanks x
Posted 2/7/2011 7:30 PM (GMT 0)
Just completed antibiotics. Not much better. Joints painful etc...... I'm very sure I'm had it awhile.

Blood to be drawn tomorrow or wednesday. 10 days for results. IV port installed if Lyme shows up again, however, we all have heard that doesn't always mean much.

Good luck 079 Best wishes Cat
Posted 2/7/2011 7:42 PM (GMT 0)
Hi 079,

I think I got infected about a year ago. The reason I believe this is because my first symptom at that time was tennis elbow-- which has been a consistent problem since.

Rest, massage, anti inflamatory meds, ice, heat, stretching and exercises never made a dent in the pain which would jump around in the elbow and often included forearm and bicep muscle.

The only thing that has made a dent ---and I'm talking over ten weeks of anibiotics--- is the ten weeks of anitbiotics! Elbow finally feels better.

My other symptoms, though the list is HUGE, included random muscle pain, shooting nerve pain, muscle twitches, sensitivity to sound, ear ringing (still have that) sinus infection, hot flashes, chills, rigid sensation in entire body, restless leg feeling in entire body, tingling, pin-prick sensations, stiff neck, arm/shoulder/back pain, stuffed up feeling in head and ears (still have that).....and the best of all.....

......walking into a wall due to vertigo, imbalance (was on couch for a week), brain fog, head feeling hot and weird (still have that last symptom) and last but not least....

.....a stiff neck recently that was so bad with sharp stabbing pains in head as well as neck that I could not move for two days. I believe this was due to inflamed/swollen glands in head and neck.

Really painfull!

Some of the above were exacerbated by or caused by herx reactions. Others were just plain Lyme symptoms.

I never know what will happen next....but overall I feel a thousand times better than I did 6 months ago. But not near 100%.

The most unusual and scary symptom I had was the feeling of being 'burnt' inside. Like I had inhaled smoke from a fire or charcoal. Really hard to describe.

I'm sure it was some sort of nerve pain....sometimes felt like the pain of a toothache. But a burnt toothache! LOL. Not funny, really. But that is gone now.
Posted 2/8/2011 8:53 PM (GMT 0)
Cat111,
Thanks for sharing ur symptoms with me I have most of them an a few more, hope u get all the answers your looking for when you have seen the llmd an let me no how it all goes. Good luck x
Posted 2/8/2011 8:57 PM (GMT 0)
Horsehelper,
Hope your feeling as well as can be it's great to hear from other people who are going through the same thing as urself, keep in touch x
Posted 2/9/2011 1:29 PM (GMT 0)
My appointment with new LLMD top doc. was great! He took my history from way back in 1986 when I first got infected and did see the bulls eye rash. I was treated then and never had a symptom.

New doc believes what I have NOW is from being freshly infected but he feels I've had Lyme longer than I thought! Ouch. More like 2-3 years rather than 1.

He appreciated all of my research on Lyme and all that I've learned from frequenting this super informative board. So he didn't bother going into too much detail.

All of my symptoms are/were "CLASSIC" in his opinion----even the weirdo ones that other docs. dismissed as non Lyme related.

He did up my Amox. dosage to double what I have been taking and was sympathetic to my giving "the other doctors a chance" and that they had treated me somewhat properly. But certainly some time was wasted with them.

He drew blood to test for coinfections (first time any doctor wanted to do that !!! ) and will address them with different medications should I have them.

In the meantime, I am to take the Amox. only (since I am responding well to antibiotics).....and after a month he will add in cyst buster meds. Again....no previous doc. had even thought of that!

He was not opposed to any homeopatic routes-- said they can be helpful-- but would rather I take only vitamins for now and of course not eat sugar and other foods that Lyme loves.

As far as exercise is concerned, he wanted me to hit it hard-- and do as much as I could to speed recovery (Lyme hates exercise) but to slow down if it caused any sort of flares or extra pain.

He wasn't particularly keen on NSAIDs in combination with Lyme and said to only take them if I really needed to.

Though I was lulled into a sense of security with my other doctors, it became obvious that once I needed more than the standard 1 month prescription (too low in mgs. anyway) of antibiotics, they headed for the hills with the advice of: "stop taking them....and let's see what happens"......rather than going the distance. Politics !!!!

New doc does not want to see me relapse again!

I'm glad he drew blood. Am VERY interested to see if I have coinfections and IF I will test positive now, just for Lyme.

Even if I don't test positive, doc will of course still treat me---and go the distance-- as if I am. Because I AM !!! ......and am finally being taken seriously.

When my last doc. blew off my my recent raging, lymph gland stiff neck as just an ordinary stiff neck.....I knew it was time to move on.

Hope I don't herx too badly from this whopping new dosage of Amox.

Remaing symptoms I have at this point are ear ringing and a sluggish, dopey head feeling. But it's not that bad. Elbows still flare up when ever they feel like it....and my stiff neck/trapezius muscle still bothers me but it's very tollerable. More annoying than anything else.

Compared to eleven weeks ago, I do feel immensely better but there is still a long way to go.
Posted 2/9/2011 6:12 PM (GMT 0)
CONGRATULATIONS, CAT!!!
HURRAY!!! I am sooo glad you were finally able to get in to see a doc that actually knows what he/she is talking about!!! It really does make a huge difference!

May I suggest that you really hit the detoxing hard as well? With your LLMD doubling your dosage, you may herx pretty bad, but you have a chance to avoid the worst of it by getting started on the detoxing before you really start to feel the effects of the die off!!

Again- Congrats on getting in to see an LLMD!!! turn
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