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Posted 2/18/2014 12:32 AM (GMT 0)
Hi I have been suffering for a year now. I have been to 41 docs and to mayo clinic. I have bladder and bowel dysfunction, severe sleeping problems, cold hands and feet, tingling in my hands, muscle twitching,thinning of the skin on my body, soar muscle and raised cpk 750 with no exercise.

I feel like my brain is never at rest. I had a brain mri done and shows white matter spots, total intestinal siga is 15 ( in a healthy person it should range from 440-800), my cd-57 is 61, and my igenex results for the western blot are + for 18 and 30 and IND for 31,39,41, and 83-93. I have just been diagnosed with lyme disease.

I am so afraid this is the wrong diagnose and I will never be myself again. I still don't have a positive test for lyme, but my doc assures me that its lyme do to all the info above. I have been checked for ms, lupus, and other autoimmune diseases.

I have been on oral antibiotics for a month and do not feel any different. I just want know that it is def lyme and I am not misdiagnosed again. Does anyone have any feedback? mad mad
Posted 2/18/2014 12:53 AM (GMT 0)
Hi Im glad you finally got a diagnosis. I would look into ammox (2000 mg) and Omnicef or comparable cepholasporin. You may need IV abx from the sounds of it.

I had late stage lyme and responded to both of those almost immediately. Godspeed, I wish you well. And many people here are knowledgeable and understand what you are going through.
Posted 2/18/2014 1:02 AM (GMT 0)
Thanks I am on doxycycline 200 mg slow release and 1000 tindazole, for the past month. The doc is going start iv this weekend. She said 500 mg of doxycline and immunglobin through iv. She feels the doxy will cross the brain barrier better than rochephin. I just want to get better does it matter what I take through the IV? I don't wan't to keep questioning the doctor.
Posted 2/18/2014 1:16 AM (GMT 0)
Hi Maw,

Welcome to the forum! I'm glad you found us. Personally I like doxy but I found for my neuro symptoms the ceftin (oral form of rocephin) worked well. It really depends on the patient. Lyme is NOT a one size fits all disease or treatment.

I would check into our "New to Lyme" start here thread. There is a lot of really good information on there. A BIG BIG component of getting better from lyme disease is treating your body well, DETOXING! Eating healthy, and supporting your immune system. Make sure you are drinking lots of water.

If you are on antibiotics make sure you are also taking a good probiotic to replace the good bacteria antibiotics are killing. Your gut will thank you! Take a deep breath and realize that many many people are very ill with this disease and they do heal. Are you seeing a lyme literate physician? That would be most peoples top recommendation - whether it is an herbalist, western MD or naturopathic doctor.

Healingwell is a great resource - probably saved my life. Aside from detoxing and probiotics I would recommend japanese knotweed for you. It crosses the blood brain barrier, reduces inflammation, and should also help with circulation. If you want immediate relief from cold/hands and feel get some ginger tea (or fresh ginger!) and drink 3x a day. It will really help.

Hang in there, research, and ask any questions! Hope you start healing soon!

~beth
Posted 2/18/2014 1:31 AM (GMT 0)
mawtimus the doc will use your feedback to tailor your treatment. I agree with Opugirl, ceftin works very very well with neuro problems. High dose ammox worked well for me with the ceftin.

The doxy did nothing for the neuro symptoms for me. The immunglobin is like gold. Hope you feel better soon.
Posted 2/18/2014 1:34 AM (GMT 0)
Thanks Beth. I am on 1 billion probiotics a day and eat a very clean diet. I will bring up the rocephin when I speak with the doc. I am seeing a really good lyme literate in my area. I juice once a day and do foot detoxes 2 times a week. The sleep disturbances is what really is destroying me. I really hope the IV treatment gets me better :)
Posted 2/18/2014 1:35 AM (GMT 0)
www.ilads.org/lyme_research/chronic_lyme.html

Chronic Lyme: An Evidence-Based Review
Print page 61 of this document if possible.
Posted 2/18/2014 1:37 AM (GMT 0)
Thanks everyone I really appreciate the feedback
Posted 2/18/2014 1:40 AM (GMT 0)
Sleep is a huge issue for lymies. I had a pretty severe bout of it for awhile. My body would jerk everytime I tried to sleep. Can you say annoying! At the worst I was getting 1-2 hours a night. blech. It does get better!
Posted 2/18/2014 1:41 AM (GMT 0)
Many of the doctors do not know much about this disease esp if they are specialist in an area heart etc. Def a good idea to do your homework and imho you have to make adjustments in medication etc as you go.
Posted 2/18/2014 1:50 AM (GMT 0)
Thanks I will let you know what doc puts me on. Since I am on oral I will suggest something else for the iv treatment. I really appreciate all the replies and help.
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