looking for help have chronic lyme and dont know what to do anymore

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lymeade
New Member


Date Joined Feb 2010
Total Posts : 13
   Posted 2/12/2010 12:06 AM (GMT -6)   
hi i am looking for help because my doctor is at a stand still i have chronic lyme and it has affected my heart my nervous sytem and my brain the only thing my doc has used to treat me with is rocphin better known as ceftriaxon and doxycycline and netiher have helped i am still in very bad pain i cant think straight i have terrible night sweats to the point where my clothes are drenched in the mornings my head hurts all the time it hasnt stopped hurting at all and all he gives me is 400 mg motrin for pain he stopped the cetriaxon after having it 2 weeks through iv every time i go to the er because i have tremors and my heart races he gives me cetriaxon shot and thats it i dont know what to do because my doctor is lost and in north carolina i havent been able to find a llmd or anyone who deals with lyme please help i feel like im dying and its hard to take care of my 2 year old and work because i am a single mom the doctor tell me to be on light duty because of my heart but i cant please this is a cry for help i dont know what to do anymore i jus want to give up im sad and worried and depressed that im not getting any help and noone around me can  give me advice because lyme isnt common where i live please someone give me advice on what todo anysuggestions would help pleaseshakehead
sincerely
a sufferer of lyme

cupcakes
Regular Member


Date Joined Feb 2010
Total Posts : 34
   Posted 2/12/2010 12:12 AM (GMT -6)   
Maybe there are some herbs you can try like for instance Samento, or homeopathic remedies?

lymeade
New Member


Date Joined Feb 2010
Total Posts : 13
   Posted 2/12/2010 12:20 AM (GMT -6)   
ive tried samento and vitamin b12 and ginko baloba none of which helped so far ive been on those for 4 months this is a scary thing ive had lyme since 2005 and it only gets worse because my doctor only treated me for 3 days the first time and 2 weeks by doxy then 2 weeks with rochin iv

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 2/12/2010 12:58 AM (GMT -6)   
Hi lymeade,

Welcome to the forum! I am so very sorry that you are suffering, but I can relate as I have the same symptoms as you. Have you found an LLMD to treat you? An LLMD is the best way to go because they know which antibiotics to use to treat Lyme. Also, since you are having night sweats, you could have a co-infection called Babesia. Have you been tested for co-infections? A different antibiotic is used to treat babesia and some doctors say that a patient will never get better from Lyme unless babesia and all other co-infections are treated first. Another thing that you could do to help you would be a detox bath. It helps get those nasty toxins out. When the Lyme bacteria die off, they release toxins into our body than can wreck havoc on alot of things.

My heart races too when I'm on treatment and Klonopin has helped me out tremendously. Maybe ask your doctor to put you on something like that. It will help your tremors too.

Have you had your thyroid checked?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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Co-Moderator Lyme Disease Forum


ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 2/12/2010 10:21 PM (GMT -6)   
My daughter and I have Lyme. Hers seems to be getting worse despite treatment. Doctor feels it is not the Lyme causing the Lyme symptoms, but rather candida overgrowth from all the antibiotics. It will be a few weeks of treating the candida and staying off the antibiotics until she will know for sure, but all signs are pointing to candida as the problem and not so much the Lyme. One of many signs of candida is mono reactivating, which hers did according to her bloodwork. Google "candida symptoms". The results might surprise you. So so very similar to Lyme. And the more you take to fix the Lyme, the more the candida takes hold.

Korissa
Regular Member


Date Joined Oct 2006
Total Posts : 343
   Posted 2/12/2010 10:31 PM (GMT -6)   
Lymeade, please check symptoms for bartonella. You have so many of them. It's hard to get a positive test for this, but if it goes untreated, it can seriously affect your heart.

Maybe you could bring some info to your MD in case he doesn't know about it.

Do you have anxiety, agitation and rages that often have nothing to do with your life? Do even the small stresses in your life seem exaggerated? Having to care for a child cannot be easy when you feel like you do.

Caldonia Sun
Regular Member


Date Joined Aug 2009
Total Posts : 310
   Posted 2/13/2010 7:46 AM (GMT -6)   
There's some info out there that says chronic lyme doesn't respond to abx alone. I have it, too, and what I did was take the abx but add in another protocol such as Buhner's herbals, Cowden or Dr. Jernigan. Each one is based on herbals and includes some powerful natural abx as well as detox agents. My doc also put me on a cholesterol med, cholestyramine, that removes the toxins caused by lyme die off - it helps. You also need to think about good vitamin supplements, rest and a very healthy diet.

I just spoke to a woman in Canada who used the Cowden protocol and colloidal silver as the abx. She is feeling great, but much keep to a good diet and watch her fatigue levels to stay healthy.

Good luck.

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 2/13/2010 9:59 AM (GMT -6)   
Have you tried dietary changes. I am not saying they will cure chronic lyme but may help you feel a little better. I have cut out sugar and trying to cut back on carbs and it has made a difference in my heart palps, heart racing, anxiety, fatigue etc. I also am taking lithium orotate which is said to help the lyme toxins in the brain. Goggle it, maybe it will help even a little.

Jeminij
Veteran Member


Date Joined Dec 2005
Total Posts : 1336
   Posted 2/13/2010 10:38 AM (GMT -6)   
I feel your pain. I have chronic lyme too. I actually beat it years ago and got 100% well, but relapsed about 6 months to a year after having my daughter (she will be 2 on March 1st). I noticed my symptoms slowly coming back as my body returned to normal after having my baby, but now I am doing a lot worse and have some days that are really bad. We thought we were pregnant again but it didn't take and now my symptoms have been even worse since. It is so difficult to take care of a toddler when you feel like hell. I don't work. I am a full time stay at home mom, but my husband works a lot of hours so I feel like a single mother most of the time and it is a lot to do when you are healthy, never mind when you are sick. I am lucky to have family close by so they help out as much as possible, but I too, am at a stand still. I have tried to go back on abx a few times, but they just don't work for me anymore. They did get me well the first time. I was on them for 2 1/2 years and it was awful, but somehow they started working and in combination with exercise I got well. I never thought I would be in this boat again dealing with all these issues after getting well. I am not on treatment as of now and continue to get worse these past weeks, but I do try to exercise as often as I can and I use an infared suana as often as I can as well as do detox baths 3 times a week, but I am not sure how much they are doing for me at this point in time. I know how badly I want to be 100% well again not only for me this time, but for my daughter who deserves to have a healthy mother that can do all the fun things she wants to do. It's very sad and depressing to watch her grow up so fast and not be albe to do all I want for her. It's a lot of stress which doesn't help matters any. I plan to take a natural approach to getting well this time. If I find anything that starts to work for me I will let you know.

achievinggrace
Forum Moderator


Date Joined Nov 2009
Total Posts : 3266
   Posted 2/13/2010 1:17 PM (GMT -6)   
I know it's hard to fight this disease and try to find the right treatment and still keep up with the demands of your life. If you cannot find a lyme literate doctor within your travel range (a lot of us travel quite a distance to see our physicians), then perhaps your doctor would be willing to talk to someone who does know what they're doing. In many cases, different treatment protocols have to be tried until one that works is found. And then it may need to be changed after it stops working. Keep fighting!

Oh, and do insist on some better pain meds -- tramadol or something stronger. You need to be your own advocate and you can't be if you are cowering in the corner with pain.
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