Desperate and Depressed

I am soooo fed up and down at the moment and feel like im fighting a losing battle constantly. I became unwell whilst on hols in Spain (i live in England) back in May. I experieneced mulitple symptoms and eventually asked my GP to be tested for Lyme, which came back positive. I then started on 3 weeks doxy 200 daily and the GP said i was cured. I then continued to go downhill again and decided to see a llmd 2 hours away who said that i havent had enough treatment etc and suggested artesunate which i took, and try to get iv antibiotics on the NHS in my area. She therefore referred me to a local rheumatologist who quite frankly was a waste of space and refused to give me any treatment untill ive been re-tested again etc despite now 4 positive lyme tests, and to see him again in Jan 09!!! I therefore contacted the llmd again who recommened taking doxy 400 for 3 months which im now doing and had to pay for privately. Ive also got an appointment with neurology on the NHS in December which i think will be a waste of time cos no-one seems to wanna know or puts it down to post lyme syndrome. The thing is im still feeling absolutely terrible. I feel worse on the antibiotics than i did before taking them and i dont know whats going on. Before taking them i had constant pain in upper arms, lower outer legs and in my neck and back. Also dizzyness, headache etc. Now i have the constant pain but they also feel fairly numb and really really heavy like its an effort to even move them. I m also sooooo tired and feel fairly sick at times. Should i be feeling like this whilst on the antibiotics?? Am i expecting too much too quickly?? Im also taking vitamins and trying to be as healthy as poss but im beginning to wonder if ive got something else cos i can barely move. My eyes are also constantly flickery and hazey. Im so stressed cos ive been off work for a couple of months now and im being really pressured to go back and also money is tight. Everyone things you are fine cos you look ok and inside im feeling desperate.

Hi Lisa......what you're experiecing is quite a common occurance for lyme suffereres.
The back and forth with dr's, the tests, the meds etc.

What meds are you on now and what dose?
Are you detoxing?
Taking a probiotic?
Have you heard about herxing?

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hi, im currently on 400 doxy daily for 3 months-only on my 2nd week at the mo and really struggling! Ive been trying to eat healthily, take vitamins and probiotic, do epsom salt baths, have massages to be as healthy as poss. No one has ever really said anything to me about what to expect whilst on meds other than what ive read on here. Im just concerned cos i feel so much worse and the heavy limb feeling now. Thanks Lisa

Something you wrote jumped out at me." People think I am ok because I look ok." For me, this is the hardest part of Lyme. My own family judges me at times about my condition. We do not look sick (most of us) and that is that toughest part. If only they could feel what we are feeling on the inside, there would be no more questions...

I would clearly say if you feel worse on doxycycline than it is a herx. You can give doxycycline to any healthy individual and they would not even know they took it. It is rather safe drug so I fimly believe you are experiencing a herx which can come in many forms, of which includes a drastic increase in symptoms. Continue to find a more knowledgable dr and hang in there.

Dear lisa l, Welcome to the forum. You may be toxic from the overload on your body due to the drug, the dead bacteria and their "insides" spilling out, and the toxins given off by the live bacteria. Try detox baths, and ask a naturopath to give you supplements to help support your liver and kidneys etc. to help your body process out all the junk. When I had that heavy feeling, it was from ammonia buildup, which is toxic.

My daughter and I were sick all the time on Doxy and the doctor had to take us off of it. I think our bodies did not tolerate it well. I hope this is not the case for you.

Best wishes. I am sorry you are so sick. bablymers mom

Was always sick on doxy -- when I came down w/ Lyme. Whoever wrote that when you give it to a healthy person, they're fine. That is true with me. But with Lyme, it's an internal battle.

Switched to non-generic form and now I'm doing better on it. Less fatigue. I use it in conjunction with Biaxin. Another antibiotic.

Right now Biaxin is putting me in a funk. I start back the doryyx today. I hate this stuff, but am desperate to try anything AND everything.

hey
there is a good dr. in wurzburg, dr. shurtz? north of munich. he has a 70% sucess rate with cronic lyme.
he does not use doxy though. that did not work for me. and yeah..it makes you feel worse!
Look on line and look at some of my old old post. like last summer. I went to see him. I needed a more agressive therapy. but I listed his drugs recc on this forum.
i would get to him if you can. you are close.
marie

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2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."