posted
Tincup: Please let me know what you learn from the Lymenet thread on ALS. Please read my post (SUZYQ) from June 24th and today. After 3 days at Mayo a year ago I was told that PLS (Primary Lateral Sclerosis) was the most likely. This is the non-fatal form of ALS. I would be relieved if we could just get the symptoms to stop progressing! Any discussion would be wonderful! Suzy
Posts: 15 | From Menomonie, Wisconsin | Registered: Jun 2008
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bettyg
Unregistered
posted
tincup,
copying the links here for yu since suzy q did not do this being new....
Topic: Alone Without Progress in Treatment??? SuzyQ Flash Member Member # 16011
posted 24-06-2008 11:58 AM -------------------------------------------------------------------------------- Hello LymeNet Friends, This site was highly recommended to me as an excellent resource for support to here goes.....
I thought you may have heard of other people who have symptoms comparable to mine. My symptoms started in 2004 with a foot drop and occasionally falling when I loose my balance.
In 2007 the pace of progression was accelerating at a scary pace. I could notice little things changing each month. I started with visiting 14 different doctors including three days in Rochester at Mayo.All tests were "Normal".
In December I went back to the neuro and had another MRI done and he said based on the fact that all tests are negative his best guess would be PLS. It's the non-fatal form of ALS.There are about 500 cases in the US and he has only diagnosed it one time previously.
I told him I had been under treatment for Lyme since September and was scheduled to start IV Therapy in January. He said there is no possibility of Lyme and asked who the doctor treating me was. I couldn't hold back my frustration anymore and gave him a bit of information on how any doctors who take the time to listen to the patients and treat the symptoms for Lyme Disease are harassed by the medical community. I told him there is no way I would "Set up" my doctor for that kind of harassment. He smiled and said "He's in LaCrosse isn't he?" I smiled and let him believe his assumption. Wrong guess! He told me to come back in 4 months and we would see how the disease was progressing as there is no cure or treatment for PLS or ALS.
Testing? I went to Dr. V and had the full battery of tests. She uses IGENEX in Calif. I came up positive for Anaplasmosis (Erlichia). My CD57 count was 37 (after 2 months on Doxy). Zero magnesium in my system.
Anyway, I'm now off my IV after 4 months, taking Biaxin 1000mg daily with Clindamyacin on Tuesdays and Thursdays. My previous meds have been: Doxy for two months, Leaquin for a week, Zythromax with my Rocephin for 3 months, and two weeks of Flagyl and Zythomax. I had a mild Herx reaction with Zythromax but no improvement in symptoms.
Now on the days that I take Clindamyiacin I have a flushed feeling, chills, nausea, headache, and joints so stiff I can hardly walk.
I am now walking with a walker,cane or assistance since May.
I also take Dr. Jernigan's Neuro-Antitox II, Borrelgeon, and Molybdenum for my detox regime. I'm two weeks into it so we'll see.
I take the nutritional supplements suggested by Dr. B. Is there an update to the guidelines since 2005?
I also take 3,000 mg Vit C and D3 as well as B12 injections 30mg once a week. I'm considering a home hyperbaric chamber.
I basically just want encouragement that my scenario is not unique and I will have my life back someday. My walking ability is almost zero. Employees help he to the restroom and to and from my car each day.Is it uncommon to see no improvement in my walking after the treatment protocol I've been under?
In 2004 I was white water rafting and hiking in Colorado and jogging, and could work in my perennial beds all weekend without tiring. I was often asked if I ever had a bad day because my outlook on life has always been positive. I went to the doctor once a year for the regular annual physical. I was a specimen of health!! Now I am not able to sweep a floor.
2004 was, however, a stressful year for me as my 29 year marriage ended. Previously in 2001 we bought 40 acres and cleared walking paths and land for a new home. Ticks were a daily ritual.
I have a very supportive employer and staff who assist me with daily activities so I am able to maintain my position in management.
My daily (hourly) prayer is that with some sign of a herxheimer reaction I might start to see a stop to worsening symptoms and maybe some improvement.
Before I started the IV Therapy I was declining noticeably every week or two. After starting the Rocephin progression stopped and the fatigue was gone until about three weeks before my doc ended the IV.
Some of my symptoms do come and go - but most continue. I feel like such hypochondriac! My list of symptoms is long - newest one is my feet get purple as though there is no circulation. Anyone heard that Lyme reduces circulation? What's next?
So, in a nutshell are there any Lyme sufferers out there who have a similar scenario? I feel as though my story is unique in that there is no reprieve of my symptoms - quite the opposite! Thanks for listening, God Bless, Suzy-Q [Roll Eyes] -------------------------------------------------------------------------------- Posts: 4 | From: Menomonie, Wisconsin | Registered: Jun 2008 | IP: Logged
Peck Frequent Contributor Member # 14526
posted 24-06-2008 12:40 PM -------------------------------------------------------------------------------- it's such a frustrating road and you'll be amazed at the number of people who have been on similar ones.
The "purple feet" could be neuropathy. I have it and was complaining about the same thing. Lyme does crazy things to our bodies. Nothing is out of bounds so try not to feel like a hypochodriac.
You do need to find some form of relaxing to keep your mind from allowing you to think you're crazy. meditate, breathing exercises.....anything.
Are you comfortable with your LLMD? Make sure you never dismiss your aches and pains. While it's sometimes easy to say "it's from Lyme" it may not be. Always dot the i's and cross the t's.
This is a good site for you to come to. I'm certain you'll find lots of support.
All the best to you. Peck
-------------------- simplify....
-------------------------------------------------------------------------------- Posts: 74 | From: Rhode Island | Registered: Jan 2008 | IP: Logged
jamescase20 Frequent Contributor Member # 14124
posted 24-06-2008 07:52 PM -------------------------------------------------------------------------------- Get a phase contrast microscpe and check your blood daily, only way to know what works.
The clinda is I think making you herx.
marcolides and tetra class lyme resists them using a efflux pump.
paxil, rosemary, black pepper, tyme, amoung others in lab experiements against mrsa strain (gram neg efflux pump) these drugs shut off the pump and allowed the abx to kill. I would consider this notion.
-------------------- 32yrlyme/bart6yrbab.On:BactrimDS4 ,RULIDE 1-2G! Ceftin1-3G,Cipro750m2x,Lariam,paxil, laqueil,xanax,oliveleaf,HHherb,rosemary,blackpepper,milkthistel,longevtial vitamin,glucosamine,malarone,plaq,lariam c -------------------------------------------------------------------------------- Posts: 739 | From: Aurora IL | Registered: Dec 2007 | IP: Logged
Topic: Biaxin-Clindamycin Combo??? SuzyQ Flash Member Member # 16011
posted 28-06-2008 09:17 AM -------------------------------------------------------------------------------- Hello Lymie Friends,
I'm trying to find a way to stop the progression of my symptoms (can't walk without walker or help)which are many but the two primary are muscle weakening and balance. You can read my long story around June 24th or so in "Medical Questions"
I have been in treatment for 6 months including 4 months of IV Rocephin (2 gms)and many orals. I am now on Biaxin (1000 mg daily) and Clindamycin (M,W,F, 900mg)
I'm also taking LDN along with many supplements according to Dr. Burrascano, Dr. J's Neuro Antitox II CNS, Borrelogen and Molybdenum.
Has anyone been on a combo of Biaxin and Clind for these late stae symptoms.
I do have a high level of confidence in my LLD.
Half of his patients are Lymies!!
Has anyone had Lipitor as a part of their protocol?
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