posted
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
[ 24. June 2008, 10:30 AM: Message edited by: SuzyQ ]
Posts: 15 | From Menomonie, Wisconsin | Registered: Jun 2008
| IP: Logged |
Hard to read your post even though I do not have Lyme.
It helps if you write short sentences and add spaces between paragraphs.
You can edit your post by using the pencil icon.
Yes, it is not uncommon to feel worse before you start feeling better.
In answer to your question regarding circulation -- many Lymies have hypercoagulation. I think this problem is worse in people with Babesia. Some people take Heparin. Others take Wobenzyme or other enzymes such as Nattokinase or Lumbrokinase. You could have Lab Corp or Quest test your fibrinogen levels or if you can afford it the best test is from HEMEX lab.
Have you retested the Ehrlichia? If that coinfection is gone, then it should be easier to treat the Lyme and any other coinfections.
I don't know what your dose of Clindamycin is but it is possible that that med is working on Bartonella as well as Lyme.
It sounds like you have been treating pretty aggressively. There are 2 schools of thought -- there are what I call the blasting docs who treat with really high doses of meds for a few months and then there are the others who say the turtle wins the race -- these docs use lower doses of meds for longer periods of time.
Some patients just can't handle the high dose meds. Hubby is one of those. He does much better on lower doses of meds without having really bad herx reactions -- progress may be slower but there are fewer major setbacks.
The other problem is that it is often hard to identify all the pathogens -- hubby thought he had treated for Bartonella 3 years ago and recently found out that it is still there and the major cause of his worst G.I. and neuro symptoms.
Glad you found LymeNet. Keep asking questions and we will do what we can to help.
My other question would be, "What are you doing for detox?"
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Breaking the post up so neuro-Lymies (which most of us are) can read it.
Hello LymeNet Friends, This site was highly recommended to me as an excellent resource for support to here goes.....Hello 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 in Winona, Mn. 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.
Oh, forgot I also take Dr. Jernigan's Neuro-Antitox II, Borrelgeon, and Molybdenum. I'm two weeks into it so we'll see. 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 notic
[ 23. June 2008, 07:42 PM: Message edited by: sixgoofykids ]
Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
I pray for you and hope you get some relief soon! I have alot of the symptoms you have AS WELL AS PURPLE FEET esp the right foot/ankle. Just want to let you know you are not alone
My drs have done test after test including an echocardiogram and dopplers on the legs. All came back clear and negative.
I do have diabetes as well, but the drs said that isn't the cause of the swelling and purple feet either, which are very very painful too. The dr's have no idea what is causing the discoloration.
I also am now using a walker or cane and can no longer work.
I see an LLMD tomorrow and hopefully will start some sort of treatment, as i'm not receiving any right now, other than pain control and maintenance meds for the diabetes, high blood pressure, depression, and insomnia (as well as the pain meds.. i do go to a pain clinic also)
I did have the western blot, hhv6, ebv and other tests done in the beginning of the year, but i believe i got bad information. I was told they didn't mean anything and i wasn't sick! so thats why i made another appt w/a different dr
I'm very hopeful and I will post any info that i get from my appt w/the dr tomorrow. i wish you the best of luck!
God bless, Leigh
-------------------- God Bless, Leigh Posts: 44 | From phoenix az | Registered: Jun 2008
| IP: Logged |
I can barely walk, use a walker or sometimes a wheelchair for trips to mall,store,etc. I can't drive and am housebound most of the time. I have two kids so summer is a challange.
I have other symptoms too, but like you I have the purple feet, much worse on my left side which is my weaker side. I have been taking Plavix which has helped the purple color. I would say before I started taking Plavix that my feet (foot) looked like a dead person's. Better now but still not normal.
In 2005 I was at the gym 5 days a week, doing Pilates, and in great shape. Flash forward to today my legs are so weak I can hardly stand and lifting a water bottle feels heavier than the 15lb hand weights I would use. I went from looking young for my age to today walking like a 90 yr old woman.
In my case I think the aggressive treatment initially has made me worse. I had terrible herxes and once was hospitalized. I don't know the answer and my new Dr is taking it slow.
Anyway I wanted to tell you that you are not alone. I feel that way too, and wonder if others are affeted by mobility issues.
Feel free to PM me if you want.
Posts: 262 | From nj | Registered: Dec 2007
| IP: Logged |
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi SuzyQ--
Your story is Common to people with lyme-
Personally I was infected in 1988 - I got sick but not real bad for about 8 yrs-
Then my sickness worsened Quickly -
People( doctors) thought I was a hypochondriac -
I went to Many doctors and got Zero Help-
4 years ago I saw a TV program about Lyme disease - Very Lucky -
In the TV program they showed a picture of the Lyme Bullseye -
Just like the Bullseye I had on the back of my leg weeks before I started getting sick --
I have Lyme and Babs --
Now after 3 years of Good treatment I feel Perty Good Most of the time - and am getting my life back --
You CAN get Well Again -I Have-
You have been sick for awhile - It is Very Likely that During Treatment you will get sicker for awhile -Herx -
Most people Herx --
Going threw Treatment was the Hardest thing I have Ever done -- But it Works --
Spend alot of Time reading on LymeNet - You will get help here -
It is Very Important to Include Vital Information in your posts you write
Your Symptoms
What your Doctors thought-
Meds Taken- Amounts length of time ect results of meds good or bad -
included this info with your questions until you understand what germs you have-
Read DR B treatment info -
Hope this Helps -Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
| IP: Logged |
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
welcome
Lots of us on the board have been sick enough to be bedridden at some point. And lots of people had misdiagnosis. There is actually currently a thread taking a poll about misdiagnosis before we knew it was lyme started by Tincup.
I feel that the fact that I have a coinfection has made the lyme much harder to beat back (I have lyme and babs).
Just so you know because of all the political issues surrounding lyme we do not post drs names one the board. We just use the first intial ( for example: Dr. X. ).
Glad you found a dr to treat you. So hang in there things will get better.
posted
Oh my God! This is insane. What is it with Mayo and "wait four months and we'll see if it's better." They did that same crap to me.
Actually, one of my doctors asked me where I was from. I told him I was from the northeast corner of Iowa. His response was "I'm from the other side of the world, when I get home I'll have to look at a map to find out where I was." Boy, that's one smart doctor.
Can you tell I'm just a bit p***ed. My keyboard sure can. I don't think I've ever banged on it this hard before. Maybe some lyme rage coming out, but I think it's more Mayo rage.
I'm curious if we had the same neuro guy. I was unable to walk because I couldn't get my legs to work right. It was like my legs weren't my legs. Along with numerous other problems. He told me it will go away and there's no reason to pursue this anymore.
I'm not a fan of Mayo, and I'm not sure of anyone here who is.
I am curios though, did he happen to mention the doctors name from LaCrosse? I did see a homeopathic doctor in LaCrosse one time. He was way out of my element. Alot of voodoo stuff. (spelling?) Also, How do you like Dr. V? I would like to see her, just can't afford it.
PLEASE PLEASE PLEASE PM me and let me know.
July
Posts: 111 | From northeast Iowa | Registered: Oct 2006
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
SuzQ,
This is a partial response to your PM to me.
I have a few days' break from my apt. and need to "not go there" with this right now. My hands also need a break from typing.
So, you ask for encouragement . . . I'll ask others here for some replies. I've not gone the abx route for a variety of reasons too numerous to mention. I've been on and off with what I could do and while some better than a decade ago, still a galaxy from normal.
I would not measure hope by my advancements. But there are others who can show you it's possible to get better.
You tested postive for erhichia, so the ALS, sort-of, dx may have been a trash can dx counting sympotms, not causes. Erhlichia is nothing to sneeze at.
I don't have the energy to go through your posts right now, so maybe someone else can make sure that you got all the NEWBIE stuff and certain key articles.
Singleton's new book: The Lyme Disease Solution - from amazon is an essential.
It seems you have all the bases covered, but I could not tell if your doctor is familar with ILADS research and guidelines. AND I'd look a bit more strongly at liver support. I don't know if the J. one is enough.
and - oh, search "lion's mane" mushroom - it's real name begins with an "h" - PubMed has an abstract that shows it may help with nerve shealth repair a bit.
Good luck . . . and thanks to everyone here who offers time to share information and shine a light.
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so thats why i made another appt w/a different dr![[hi]](graemlins/hi.gif)
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Boy, that's one smart doctor. 
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