I am feeling better in so many ways. One thing though is the tops of my feet are killing me. My right foot has responded to PT (exercise, laser, and electrical stim) The left foot is worse than ever and hurts constantly, not just in the am.
I did not test positive for Bartonella (even though it is usually the bottoms of the feet) but I just started a course of flagyl and cipro just in case.
I really feel like I need to get my life back...and yet I am really hobbling around. I have never been an avid exerciser but have felt so compromised I really would like to start walking, and feel like I have the energy to do so except for my darn feet.
So I have an appointment with a podiatrist next week...and I know he might suggest a series of shots (provided he finds nothing broken) as I have been debilitated since May.
Would you ever consider the cortisone shots if it allowed you to get stronger in other ways?
as always...much thanks
Posted by Keebler (Member # 12673) on :
- Q: Cortisone shots?
A: Absolutely NOT. Sorry.
Steroids can cause tremendous systemic damage to those with any chronic stealth infection. What does your LLMD say about this?
I cannot adequately convey the pain and misery I've endured over the years as a result of various cortisone shots in my feet (before I knew this is prohibited for those with lyme & co).
Can you find an ILADS-minded LL podiatrist? If not, see what the podiatrist has to say regarding certain footwear, orthotics, therapy - but not steroids.
Cortisone can stay in your body for six months or so -- and is a risk beyond control -- unless you first have your LLMD on board all along the way. -
Posted by Lymetoo (Member # 743) on :
or your Dr can use ultrasound therapy and prescribed orthotics
I'm still waiting on an appointment too. My new podiatrist had a car accident last weekend and my apptm was this past Monday!
Posted by Kudzuslipper (Member # 31915) on :
LOL. yes, tu tu I remember giving you foot advice. I am very frustrated now. they did use cold laser.
Posted by Lymetoo (Member # 743) on :
I'm VERY frustrated too. I can barely do my grocery shopping. Can't exercise. HATE IT!!!! Posted by jer69 (Member # 34046) on :
The biggest question I continue to have is that of "naturally" derived hormones like cortisone from yams or licorice- I have tried the bio-identical yam generated cortisone and it still mad me sick
Posted by Keebler (Member # 12673) on :
- jer69,
Many foods / plants contain steroids are not at all the pharmaceutical kind of steroids prohibited.
There's a marvelous balance in plants. A ND can tell you more. The Herbal links below may also be of interest. ------------------------
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures;
Knowing that support supplements are important, but NEVER enough alone. And knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL links, and
BODY WORK links with safety tailored to lyme patients,
RIFE links,
BIONIC 880 (& PE-1) links, and
LOW HEAT INFRARED SAUNA detail. -
Posted by Kudzuslipper (Member # 31915) on :
if heat makes it worse what does that say to you all?
as part of my PT, I am able to use a health club...so I thought I would treat myself to a steamroom and sauna, a little detox r & r... my foot was on fire with pain last night and today. I can't really blame the PT as it was just gentle massage, cold laser, and electric stim. She didn't even have me do the exercises I normally do, cause I hurt my knee (another story) But could the heat have aggravated it? I did ice it last night? but there is no swelling?
well maybe the podiatrist can at least xray it.
so another question... can spirochetes settle in a joint and be removed? I was at a gathering and a woman was telling me how her teenage son, came down with a flu and then was unable to move his arm/elbow and it was in severe pain...after much testing, they decided it was lyme (unbelievable) and they did intravenous abx, but they also removed lyme infected fluid or something from his elbow. Has anyone ever heard of such a thing?
The strangest thing about my foot problem is... it started during my first herx back in May without any apparent cause... both feet, same place. all other aches move around and come and go but not this. I guess nothing is really strange in the lyme chronicles.
Posted by Keebler (Member # 12673) on :
- electric stim is a "no" according to Dr. B's guidelines.
That steam / sauna heat make things worse, says to me that there is still infection, possible damage to myelin sheath and to mitochondria and also adrenal dysfunction.
All that goes with TBD. Heat can be very hard on those with any demyelinating condition (as is lyme/TBD). ---------
MYELIN SHEATH & MITOCHONDRIA SUPPORT discussed here:
Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
Dr. Burrascano's Treatment Guidelines (2008) - 37 pages
------------ As important as any supplements, sections regarding self-care:
Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES
and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation. -
Posted by Keebler (Member # 12673) on :
- Yes, I've heard of them "draining" a swollen joint filled with fluid. While that can't get all the infection out, it can relieve pressure and give the Rx a better chance. -
Posted by randibear (Member # 11290) on :
no no no....steroids whatever...
Posted by Lymetoo (Member # 743) on :
My problems really BEGAN with a chiro "adjustment" on my feet. TOO much for me.
My chiro told me no reflexology until this calms down. ( i have a friend who does it)
So, I would be extremely cautious about any massage. He was very cautious about doing too much on the cold laser. (wish he had been more cautious in the beginning!!!!)
No way do I tolerate elec stimulation. Learned that lesson about 20 yrs ago.
Posted by timaca (Member # 6911) on :
My illness started because of a steroid shot to my knee. I believe it suppressed the immune function enough in that joint to allow a bacterial pathogen (possibly Lyme) reactivate.
I will never, ever do steroids again. Ever.
Best, Timaca
Posted by manybites (Member # 33750) on :
My disease was activated from the steroids shoots as well.I had that in my knee and spread fast in my hips and I was dragging my leg while they told me I have just a drop of water in my knee from the X ray.
Actually was a cyst of lyme that was activated but no one in Europe back than could figure that out.
Posted by Kudzuslipper (Member # 31915) on :
OMG. Keebler, How did I miss that on page 32? --- I even gave those pages to my PT to read as I was hooked up!!!
Keebler, could you do me a favor and explain why the heat reaction says possible myelin sheath damage to you ? and mitchondria and adrenal problems?
I am obviously not absorbing the medical jargon I am reading. I thought we were supposed to stay hot. I feel really overwhelmed with all we are expected to understand.
But I am hearing all of you NO CORTISONE SHOTS Posted by Lymetoo (Member # 743) on :
Heat in general is not helpful for an inflamed area. But putting ice on my feet does not help either since I have Raynaud's! OUCH.
Didn't know about myelin sheath stuff.
Posted by Keebler (Member # 12673) on :
- you asked:
"could you do me a favor and explain why the heat reaction says possible myelin sheath damage to you ? and mitchondria and adrenal problems? "
Sorry, I cannot. I just don't have the cognitive capacity or energy to explain. I've just read it and experienced it so many times over the years.
Most LLMDs know all about this.
While not about lyme, the WAHLS book explains a lot about demyelination and mitochondria problems that also occur with lyme & TBD -- that link:
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