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achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 9/2/2010 7:08 AM (GMT -6)   
Hi everyone,
I was bitten 24 years and three years ago. After two years on antibiotics to treat Lyme and co-infections, I have been off them since May. I have been feeling from good to great except for ongoing pain in my hands and feet and a stiff neck. I also got set back by a few viruses and some herxes when I first take the oregano extract I pulse bimonthly

Gradually, I have been feeling worse. It started with a strange swelling/tightening sensation in the front of my neck accompanied by hot sweats and fatigue. And then neurological problems started to flare up again; meningeal pain, buzzing at nerve points, tremors, disorientation, cognitive problems, catalepsy, and sensitivity to light and noise. Irritability is up, too. My poor husband.

My llmd told me to come and see him: that is tomorrow. My husband, however, feels that my doc has had enough time to "fix" me. He wants me to go to a neurologist. What, if anything, could a neurologist do for me that my llmd can't? I think it will just be a battery of uncomfortable tests all leading up to hearing that there's nothing to be done for me. What do you all think?

OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 9/2/2010 7:31 AM (GMT -6)   
Although I am sure there are "relapses" for some lyme patients, I don't think they are as common as some want us to believe. I suggest you have your hormones checked; thyroid, adrenal and sex hormones and some viral testing done. Your symptoms are classic for hormone imbalance and/or viral infection(s). I do realize some would say they are also classic lyme symptoms, but you have treated lyme for two years, right? Maybe it is time to look at things from another angle. Perhaps your llmd (he/she should) will test these other things.

Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 9/2/2010 7:44 AM (GMT -6)   
Was just reading last night on Dr. Burrascano's 2008 Diagnostic hints and babesia's one side effect is obvious sweats, usually at night, but can be day sweats as well. If you don't have a relapse, then you have a nasty co-infection. If you're feeling worse, you're feeling worse...end of story. By this time, you know your body well enough to name what the symptoms are. It's a known fact that chronic lyme is an ongoing process and the longer you had it before getting diagnosed, the longer (if ever) it takes to get rid of it. KEEP THE APPOINTMENT. You might want to get the DVD Under Our Skin and make your husband watch it..... I just did and it was a wake-up call for the both of us. Take care of yourself.... Oh yes, OneWearyChick has a good idea about the hormones, however, I was never able to get anything to work because of the lyme.....

mainegirl
Regular Member


Date Joined Aug 2010
Total Posts : 61
   Posted 9/2/2010 10:30 AM (GMT -6)   
I'm so sorry for your situation but I can tell you from my experience that everytime I stop any type of tratment the lyme goes to another part of my body it never stops but thats me. . Go to your lyme Dr and go to the neuro also have your thyroid alot of lyme people have thyroid problems. my opion are that yes alot of lyme people do get relapses. I agree with Mamyou she's right. I went through alot of Drs neuro's you name it. Thinking ok something else is going on always to hear its the lyme or co-infections.

I also put in the movie under our skin 1 night and my husband watched even though he at first didn't want to . let me tell you it shocked him after the movie he was on the internet
reading everything he can. prayers for you ok.

marlene just my experience

Hippie Hiker Chick
Regular Member


Date Joined Aug 2010
Total Posts : 77
   Posted 9/2/2010 11:14 AM (GMT -6)   
Marlene - my husband was the same way about Under Our Skin. It was an eye opener for me as well - I tend to take things too lightly. I REALLY thought I'd be well over this by now. Oh Well.

Grace - I'm sorry you are not feeling well again. I would ask your LLMD about biofilms - the spirochetes can "cover themselves up" under a biofilm to escape abx treatments. When you are off abx for a while, they come back out and repopulate. I am doing some GI work for biofilm and have been off abx since June. I am doing Epsilon rizon though - which is a combination of essential oils that are a powererful antimicrobial.

Is your LLMD only a Lyme doctor? I would think you could go to your recheck and he would steer you in the right direction.

Jeminij
Veteran Member


Date Joined Dec 2005
Total Posts : 1336
   Posted 9/2/2010 11:20 AM (GMT -6)   
you can certainly have a relapse after being well for a long time. I am proof of that. I was on abx for almost 3 years and off them and feeling amazing for over 3 years. I started to get some small symptoms coming back after a stressful event and ended up having a relapase and going back on abx for almost a year. There is no time frame for how long it can take to get well or stay well with this illness. It can't hurt to see another Dr. if you think something else is going on, but listen to your body. If you feel it is lyme it might be best to see your lyme dr. and you might need to go back on meds again. I haven't been on abx for over 3 years since my daughter was born. I still have episodes where I don't feel well and times when I feel great. I don't know if I will ever be 100% cured of this disease. It's been ongoing since 1998, but I do know that at this point whatever flare-ups I have now will pass and I try to keep them at bay with exercise (for me this has been like a miracle cure). I do however have a toddler and not much free time so I am not always able to do it and going through a lot right now personally I have my good days and my bad days.

The key right now is to get it before it turns into a full blown relapse. The sooner you start to combat the symptoms that are showing up now the less likely it will turn into anything long term and maybe you can knock them out with a little bit of treatment.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 9/2/2010 6:18 PM (GMT -6)   
They way I understand it I believe you will battle it for the rest of your life once you have chronic lyme. As soon as your symptoms come back, go back to dr. and get back on meds. I have resigned myself to chronic lyme for life. The trick is to keep away the worst symptoms and get a jump before you get worse. I am lucky to have kept away the horrific symptoms some suffer and realize it will require a lifetime of meds and life style changes but I'm determined.
Lyme, erlichosis, bartonella, herpes, EBV. 4 years undiagnosed despite 10 drs.
Current meds: tetracycline, amanatadine, neurontin, xanax, valtrex
Prior meds: amoxicillin, probenecid, doxy. IV refused by insurance.
THERE ARE ROUGH DAYS, TOUGH DAYS BUT ALSO GOOD DAYS. MY BOYS GET ME THROUGH THE BAD AND I SO ENJOY THE GOOD DAYS WITH THEM!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 9/2/2010 6:33 PM (GMT -6)   
Achievinggrace, I am soooo sorry that you are still suffering!!
First of all, let me state that I do agree with what everyone has said so far about going back to your LLMD & make sure he/she understands what you are going through. Don't leave even the smallest symptoms when you talk with your LLMD!

I don't necessarily agree with what is being said about chronic Lyme though. I really thought that I was going to slowly waste away due to the toxins not long ago. If you are not seeing any improvement after taking abx long term, maybe it's time to go with a different type of treatment?? It worked for me.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 9/3/2010 5:31 AM (GMT -6)   
Thanks, everyone! It helps to have your input and support.

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 9/3/2010 7:26 PM (GMT -6)   
Well, the doc thinks I was probably infected with Lyme Disease again, given my symptoms. And now that I think about it, I did have a funny itchy thing on my scalp that didn't heal for ages. My gosh, this is my third bite, you would think I would immediately have something like that checked out. Back on Rifampin. At least I know the way back to good health now!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 9/4/2010 3:32 PM (GMT -6)   
I am really sorry to hear of your re-infections!! I have been re-infected several times myself. Like you I thought "at least I know what to do this time!!!

Best of luck to you with your treatment!!!
Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 9/5/2010 5:21 AM (GMT -6)   
Thanks Traveler!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 9/5/2010 9:04 AM (GMT -6)   
We're all in this together!!!
Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

allieann
Regular Member


Date Joined May 2010
Total Posts : 116
   Posted 9/6/2010 3:40 PM (GMT -6)   
Sounds like you might have some of the co-infections that are still active.  When you are given a drug that is good for lyme and not necessarily good for treating some of the co-infections it can present a problem.  Lyme bacteria replicates very slowly, however, is a very strong disease and usually keeps the other bacterias and viruses in check. Many co-infections can multiply very fast and can actually be worse than lyme, once the lyme bacteria load is reduced.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 9/6/2010 4:42 PM (GMT -6)   
I'm very sorry, AchievingGrace. Hate to say this, but I do hope this is a new infection that can be kicked, and not a relapse. And I pray that Springjeans is wrong and that this is not necessarily a life long infection! This is just too tough!
Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 9/6/2010 6:01 PM (GMT -6)   
Well, I'm thinking my llmd was right, that it is a new infection. I am responding very well to the antibiotics. I already have lost the neurological symptoms, my energy has improved, my glands are swelling less often, and I can think! I'm keeping up with my detoxing, to keep the herx reaction to a minimum, at least that's the plan.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 9/6/2010 7:08 PM (GMT -6)   
HAPPY DANCE TIME!!!!!

Congrats Achievinggrace!!
Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav
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