I just wanted to check in with an update. I was diagnosed with Lyme in June (2007), and in treatment since that time. I have treated with a variety of antibiotics and supplements--most recently Doxycycline and Rifampin (my LLMD suspects the possibility of Bart).
I am also following an elimination diet--gluten, dairy, and sugar. I am taking Nystatin.
Given the fact that I have probably had Lyme over 20 years, I am wondering if some sort of improvement should have been noticeable by now. Is it too early, considering the 20 years--or is something wrong or missing with the treatment.
I have continued to work and function pretty well. It's difficult at times, though.
Some symptoms definitely seem worse since June, like left elbow pain. However, the pain and aggravations do not seem like a herx (intensification and then release, etc.)--they seem like a gradual intensification.
Please let me know your thoughts. Thanks.
Posts: 83 | From Minnesota | Registered: Dec 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
It varies!!! I was on orals for a whole year and kept declining- I needed something stronger- for me, IV Rocepihn, 9 months.
I would ask your doc re IM BIcillin since orals do not seem to be making positive changes for oyu!!! I just kept getting worse on orals, too-
Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I felt like &#$& the first year, then only like "dirt" the second. Stayed on abx another 2 yrs after that.
I'd had Lyme for 42 yrs at the time I was dxd. So....hang in there!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I have had Lyme for about 10 years & was misdiagnosed.
I just found out that I "probably" had Lyme all these years when they told me it was fibromyalgia. (My western blot was negative by NY State standards but my doctor feels that I actually do have Lyme.)
I started antibiotic therapy last Feb '07 & continued until about a month ago (Oct '07).
I didn't have any improvement. If fact, I feel worse.
There is not much real evidence that larger & larger doses of abx will completely get rid of Lyme.
There are big risks of taking abx on a long term basis for something that will not necessarily work.
There is alot of evidence that Lyme can change form & live in your body unaffected by abx.
I decided to try the Cowden herbal protocol rather than go on with the abx.
I'll probably be able to start it in a week or so.
They claim they have clinical studies that 70% of people using the Cowden protocol get better.
I'm not sure if it represents a cure but it sounded like a better alternative than endless abx to me.
Some people seem to do well on abx but I guess you just have to make a decision with what you feel is the right way to go.
I feel more comfortable with more "natural" cures.
I'd rather go that route since there is clinical evidence that the Cowden protocol does work.
70% of people who get an improvement (or cure - I don't recall the specifics off hand of the study) is very high by medical standards. (You can check the Nurtimedix website for further info. - https://www.nutramedix.com/store/comersus_index.asp)
I have no idea what the statistics are if you stick with antibiotics.
I looked for some studies about this but I couldn't find any.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Some further info about the Cowden protocol -
I'm not sure if I was exactly correct in the above comments I made about the studies but I think you'll find further info here:
Pilot Study Results A 6-month pilot study was recently conducted with 28 patients suffering from Advanced Chronic Lyme disease. All the patients tested positive for Lyme disease utilizing the Western Blot blood test for Borrelia burgdorferi (Bb, the bacteria that causes Lyme disease. The control groupwas treated with conventional antibiotic treatment, and at the end of the study, from 14 patients in this group, 3 slightly improved, 3 got worse, and the rest remained with no change in their clinical condition. The experimental groupwas treated with Pentacyclic Alkaloid Chemotype Uncaria tomentosa. At the end of the study, 85% of the patients in this grouptested negative for Bb, and all the patients experienced a dramatic improvement in their clinical condition. A full report will be available soon.
One such protocol is used by Wm. Lee Cowden, MD, a renowned physician and medical researcher who treats people diagnosed with Lyme. Dr. Cowden's protocol has been undergoing studies for effectiveness for Chronic Lyme disease for the past several years. The protocol includes Peruvian herbs Cumanda, Samento and Burbur, among others. Many of these herbal remedies have been used for over two thousand years to cure serious diseases such as Malaria. A year-long, double-blind, placebo controlled clinical study of the effectiveness in treating Lyme with Samento and Burbur is currently underway in the Netherlands (Feb 2007), with positive results at the three month mark. The herbs are found to be safe and effective in killing the bacteria but leaving the friendly flora alone.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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One, do you have babesia symptoms? It needs to be treated first if you have it.
Two, if you are feeling steadily worse, you are on the wrong drugs. If you just said that you still feel bad, I would say it's "only" been 7 months, but since you say you feel steadily worse, it sounds like it's not working for you. I would try something different.
I still felt pretty bad at 7 months .... now at 10 months, I'm feeling about 90%. It definitely takes time.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Well, I would say that I feel worse, as compared to about a year ago. One year ago, I did not have the pain in my left arm...although the other symptoms were definitely present.
My LLMD does not think I have Babesia. She used a Multistix Urinalysis process where I checked my urine every day for 30 days--checking blood. I saw her at the end of October. It was then that she mentioned Bartonella as a possibility.
Her plan is to add Zithromax to the Doxy and Rif. in the next week or two.
I plan to stick with antibiotics for now. I'll keep looking for signs of improvement.
Posts: 83 | From Minnesota | Registered: Dec 2006
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