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Old 11-26-2012, 06:44 PM   #1
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Lyme Treatments - What has helped you?

I've been reading posts here for months and finally decided to join. It seems that most of us are here in search of help and many of us are on the verge of giving up after failed treatments. I've been sick for 20 years! I'm too fatigued and dont have the energy to write everything I've been through but in a nutshell my case is probably similar to many of you.

I got flu-like symptoms 20 years ago (fatigue, brain-fog, aches, sore throat, inner ear pain, etc) and instead of going away it just stayed that way. I've probably seen 50 doctors (medical and natural) and spent a small fortune. I was diagnosed (mis-diagnosed) with everything from Chronic fatigue to fibromyalgia to lupus. In recent years I tested positive with very high numbers for EBV Epstein Barr virus and last year my naturopath sent my blood to Igenix and it came back positive for Lyme.

I've done every natural supplement and herbal therapy, also low dose naltrexone, tindamax, IV treatment (i think it was salt water and vitamin c?), detoxes, etc., and nothing has helped me so far. Some of the natural treatments made me worse as my body could not tolerate the amounts of herbals (massive GI stress) and perhaps the die off made me worse, either way I had to stop those treatments.

This has ruined my life. I somehow manage to work although my business has suffered greatly as I just cant keep up with my old self. I coast along frustrated that I cant find help for this but somehow get by okay day to day until the flare-ups happen. These are either EBV flare-ups or possibly herxing (or both) but when that happens its game over. I can't work, the fatigue is extreme, I can't focus, can't read and can barely walk or talk and am too weak to leave the house for the duration of these flare-ups which typically last for weeks. I am in the midst of one now and it has been @ 3 or 4 weeks. It's all I can do just to type this. This is verrrrry frustrating for a former Type A dude.

My last doctor called on someone out of state that specialized in lyme and they suggested long term antibiotics and tindamax. Unfortunately I am allergic to ANY form of penicillin and most of the abx used for lyme seem to be related to penicillin. I was told to try Erythromycin which is sitting on my shelf unopened. I'm not sure what to do next. I have no doctor and am unsure about what the abx effects may be. I am still searching for a decent LLMD in my area.

Anyway, before I pass out here I will try to get to the point of my post, and that is:

WHAT HAS HELPED YOU?

With so many people here in this forum, it would really be helpful to hear what has helped others who have gone through this. What has helped you beat this or what has at least greatly helped your symptoms? Are there treatments I have missed? I hope I'm not violating any rules by asking this. Again, I think we are all here looking to share what we can to help others. I need help and I know many others here do too. Thanks in advance for your help. MM

 
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Old 11-26-2012, 06:46 PM   #2
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Re: Lyme Treatments - What has helped you?

PS a friend on east coast suggested lyme nosode drops and i started that @ 1 week ago....havent noticed any change in my symptoms so far....

 
Old 11-26-2012, 08:18 PM   #3
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Re: Lyme Treatments - What has helped you?

I think all of us on this board look to each other for answers and support. It always helps me to know that I'm not the only one trying to get through this. It is a very long journey. We all have different experiences, but I think we are all experiencing a lot of the same trials.
You asked what has helped me: long term abx (one year only so far) and $1500 per month of supplements. The supplements I think have really helped heal my immune system. I take 92 pills a day (10 are antibiotics). The rest are supps. My naturopath and llmd saved my life.
I literally couldn't move a year ago. Today I exercise and work again. Its not always easy. I still have neuro issues (memory, foggy, and some pressure in head).
I know that you said you can't tolerate abx, but I feel like these helped me too. My llmd says I will be in treatment for at least 2 more years. It has become part of my life. I lug my meds wherever I go. I try to stay positive always.
I try to help others and encourage them to stay strong.
I don't know what the answers are...I only try to live my best every day without getting discouraged.
This is one of the hardest paths I think one can go through...hang in there and I'm glad you joined the board!

 
Old 11-26-2012, 08:30 PM   #4
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Re: Lyme Treatments - What has helped you?

thanx annalisa! i have read many of your posts here and appreciate your input! wow, thats a lot of pills! i have taken tons of supplements and are still taking some now. What are the main supplements you feel have made a difference?

 
Old 11-26-2012, 09:01 PM   #5
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Re: Lyme Treatments - What has helped you?

I will give you a list of some of my supps. I have lyme, Babesia, and bartonella. So my supps help with all of these. I did have ebv but I don't anymore. I've also had parasites, but was on an rx for that and that has cleared up too.
The abx I'm on are: tindamax, omnicef, rifampin, mepron, malarone. My stomach appears to be very healthy and all of these abx don't bother me. I do take nystatin for yeast tho.
Here are some of my supps: intestinal drawing formula ( for binding toxins). I also take green clay and diatomaceous earth. Clay for binding and the diatomaceous earth for parasites.
1000 mg vit c, 5000 mg vit d, magnesium
I take beyond balance drops: bb1, bar 1 and 2, bab1.
Other drops include: circulopath , drainage tone
I also make a drink with a lot of other drops as well - could get you that info too.
I take artemisinin, cats claw, yucca, aminogest, lymph support, dhea, pregenelone.
Fish oil, limonene , and more. That's not all of it but that should help give you some stuff to research.
I know a lot of people do Byron whites protocol. I haven't.
Other people do the salt/c protocol too.
Do you see an llmd or naturopath?

 
Old 11-27-2012, 04:34 AM   #6
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Re: Lyme Treatments - What has helped you?

MM,

Lyme Disease is a life changer, for sure. I understand your frustration.

I would just encourage you to find something that you trust for treatment and then stick with it through the herx's. An LLMD or Naturopath could help greatly to keep you on track, especially when a herx arises. I never worked with an LLMD as I chose a different path to healing, but if you opt for some type of allopathic therapy then your best bet is the lyme specialist, even if you have to travel.

But back to your herxing. From all your reading here I'm sure you know that a herx is a good thing as it indicates the treatment is working. But you need to be detoxing when these occur. For me (and most), this required a truck load of potions to get me through them. Different potions for different ailments. This is where these forums and research are so important - to learn what has worked for others with similar symptoms. Oftentimes I did feel worse from addressing the herx, even feeling like I was at death's door, but this is when it's important not to give up. Better to back off a bit than stop treatment altogether because if you stop you're just giving the spirochetes another chance to flourish. If they gain a foothold, it's like starting all over again!

I have had LD for as long as you, probably about 10 years longer. I think I am about 90+% healed but I still do a maintenance dose of my treatment every day. Once you reach a chronic stage of LD it becomes more difficult to completely eradicate the critters. LD is then a bit like Malaria in that certain circumstances, like stress, diet, etc. can bring the symptoms to the fore. However, usually at this point they are mild symptoms. This has been my experience, as well as others I know in a similar stage of healing. But this necessitates going through all aspects of the treatment. In doing so, it will get better! Hard to believe, I know, when you are where you are right now.

It was lyme buddies who kept me from going off the deep end. Just knowing that so many others were experiencing exactly what I was helped tremendously in the encouragement department. This is why I continue to post here. Maybe there is even a physical support group in your area?

I know you didn't ask for advice so I hope you don't mind hearing this. It's just that I felt your frustration because I have known it as well. There is hope. There is help. Don't give up on yourself MM.

Jen

 
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Old 11-27-2012, 02:22 PM   #7
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Re: Lyme Treatments - What has helped you?

Quote:
Originally Posted by annalisa9397 View Post
I will give you a list of some of my supps. I have lyme, Babesia, and bartonella. So my supps help with all of these. I did have ebv but I don't anymore. I've also had parasites, but was on an rx for that and that has cleared up too.
The abx I'm on are: tindamax, omnicef, rifampin, mepron, malarone. My stomach appears to be very healthy and all of these abx don't bother me. I do take nystatin for yeast tho.
Here are some of my supps: intestinal drawing formula ( for binding toxins). I also take green clay and diatomaceous earth. Clay for binding and the diatomaceous earth for parasites.
1000 mg vit c, 5000 mg vit d, magnesium
I take beyond balance drops: bb1, bar 1 and 2, bab1.
Other drops include: circulopath , drainage tone
I also make a drink with a lot of other drops as well - could get you that info too.
I take artemisinin, cats claw, yucca, aminogest, lymph support, dhea, pregenelone.
Fish oil, limonene , and more. That's not all of it but that should help give you some stuff to research.
I know a lot of people do Byron whites protocol. I haven't.
Other people do the salt/c protocol too.
Do you see an llmd or naturopath?
thanx there are some here i am less familiar with so look forward to looking them up...unfortunately i only have naturopath, great doc but no lyme experience...going to san diego today to meet with a llmd, hopefully they will have more answers or suggestions...thanx again

 
Old 11-27-2012, 02:35 PM   #8
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Re: Lyme Treatments - What has helped you?

MM,
Please keep me posted on what your llmd says in SD. Hopefully they will be able to help you. Hopefully he/she can get you on a protocol that will help you. All I can say is that it is a long road - one that doesn't stop soon. I think once you get a good protocol, and if you stick with it, you will hopefully see some improvement.
I stick to mine religiously. I don't ever stop even if it makes me feel horrible.
I'm so glad you joined this board. I really like talking with people about what we all go through!
Annalisa

 
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Old 11-27-2012, 02:48 PM   #9
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Re: Lyme Treatments - What has helped you?

thanx for the encouragement im just in such a bad cycle right now im afraid to deal with die-off again...my head feels like its going to explode and i am so weak i feel like im walking in quicksand...i cant even imagine feeling worse than i do now so the prospect of abx die off scares me..kind of a catch-22....

 
Old 11-27-2012, 02:58 PM   #10
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Re: Lyme Treatments - What has helped you?

I know exactly what you are talking about. I was so sick and couldn't imagine being sicker. I did get sicker, but then I started to get better. I had the exact symptoms as you. I thought my eyes were going to burst out of my head. My legs couldn't walk I was so weak. I am right there with you. The herxing was horrible BUT then I started to get better. I am so sorry and I COMPLETELY understand. See what your llmd says and go from there. Hang in there.

 
Old 11-28-2012, 07:10 PM   #11
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Re: Lyme Treatments - What has helped you?

started generic z-pack today...the party starts now!

 
Old 11-28-2012, 07:18 PM   #12
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Re: Lyme Treatments - What has helped you?

PS when you herxed from the first abx how long did the herxing last?

 
Old 11-28-2012, 08:59 PM   #13
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Re: Lyme Treatments - What has helped you?

Oh - I'm so glad you are getting started on abx. I was given a zpack before I knew I had lyme. I had so much eye and head pressure so I had gone to my eye dr thinking it was something with my vision. The zpack made me herx horribly, but I didn't know that's what it was - I thought I was having an allergic reaction to the zpack.
I don't want to bore you with all the details, but I herxed badly on it for a few weeks. Then I got to an llmd and we figured out what was wrong. He started me on doxy and omnicef. I herxed bad on that too. I never stopped taking any of my meds though.
I'm going to try to see if I can private message you so this doesn't get too long for others!
Keep me posted!

 
Old 11-29-2012, 10:52 AM   #14
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Re: Lyme Treatments - What has helped you?

My son is 24 and was diagnosed October, 2011. He started having problems in high school and was not properly diagnosed until 2011. His LLMD just took him off the tindamax and planquenil, and his only abx now is biaxin, along with the following supplements:

DHEA
Vitamin D
Pregnenalone (steroid)
Life Pack multi-vitamin
Reconolize
Baby aspirin
B-complex
Vitamin C
Liva Guard
Glysom
AdvaClear
Vitality
Opticleanse ghi (xymogen)
L-Tyrosine – 2 2x/day
ABart drops (take all alone)
Krill based Fish Oil
Iodoral
Silver supplement

He still does not feel 100% normal, but he is sooooo much better than he was this time last year. I was very thankful this Thanksgiving for his improvement over last year's holiday, which he spent laying on the couch in the dark with hats on to somewhat help the pressure in his head.

I don't know what you consider "in your area," but he drives 1-1/2 hours to see his LLMD.

 
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Old 11-29-2012, 11:14 AM   #15
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Re: Lyme Treatments - What has helped you?

Music mafia
I got a message that we can't post emails on here. So I sent you a friend request and added you to my contacts. I don't know how that works. Anyways, I will just keep
Checking in to see how you are doing
Annalisa

 
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