CSF and not Lyme Disease...

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 5/13/2008 5:53 AM (GMT -7)   
Hi everyone-I usually am over on the Lyme board but have been reading alot on here too. I want to try and make this short and hopefully someone here can give me their ideas and imput.
 
I became sick in October 2004 with severe muscle cramps in my calf along with twitching of the muscles (calf only). Then about 3 weeks later I came down with a 24 hour flu which included chills-fever-backache-headache. A couple days later I came down with the same flu only the following morning when I woke up I couldn't bend my elbows or fingers/hands. It took a few minutes to get them going. 3 weeks after that I was hit with horrible fatigue. In the many months that followed I had over 20 symptoms come and go. The finger stiffness lasted 10 months. I was diagnosed with CFS by my doctor and told there was nothing he could do. I had to work part time and couldn't make plans and at times was totally disabled by the fatigue.
 
I finally saw another doctor who suspected Lyme along with AF and thyroid problems. I was found to have extremely low cortisol levels and hypo thyroid. I tested positive for Bartonella and had 4 Lyme specific bands show. I have been on abx since Nov 2006.
 
My question is this.. I have no weakness-no cognitive problems-no headaches etc. I still have the muscle twitching/pain in my calf and the daily ongoing fatigue. All the other symptoms are gone. I am able to work part time and I exercise 4 times a week.
When I get up in the morning I feel really good until about 2-3 hours later the fatigue hits and I am done.
I am now wondering if this is CFS and not Lyme. I go to a Lyme doctor in NY who assures me this is Lyme/Bartonella but I am not so sure since fatigue is my number one problem.
Sorry this is so long and I am sure I am missing some key points but if anyone has any ideas on this I could use some advice. Thanks
 
Kim

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/18/2008 6:26 AM (GMT -7)   
Kim, it's so hard to tell, since so many of these chronic illnesses share a lot of symptoms. Did some of the tests come back positive for lymes? Is your doctor doing anything for your low cortisol levels? We've had others here in the past who have low cortisol levels and meds have helped with the fatigue. I wish I could be of more help.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 5/19/2008 12:33 PM (GMT -7)   

I did have some positives on my Lyme test and I did have a positive for Bartonella which is a Lyme co-infection.

I am on 15 mg of cortef daily for my low cortisol levels. It did help with the exhaustion I was feeling but I still have daily fatigue which is sometimes horrible and sometimes managable. I also tried provigil at one point but the problem was that I wasn't feeling sleepy just total body exhaustion. I didn't want to put myself in a position where I would do things because I was feeling as though I could and then crash even more. I think I took a weeks worth of that and then stopped.

I guess I will just have to trust my Lyme doctor and keep on with the abx. I just don't want to take years of medications for something I don't really have.

Thank you for taking the time to respond to my questions. It is much appreciated.

Kim


ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 5/21/2008 5:11 AM (GMT -7)   
I tried the B12 shots a year ago. I am seeing Dr. H in NY and he has me on Bicillin injections right now so maybe I will give the B12 another try. Most of my 50 or so symptoms are gone except the constant fatigue which I have had for over 3 years and the muscle pain etc in my leg. along with a few others. I guess I will just keep on with the abx and hope one of the combinations will get me better.

Luvvly03
Regular Member


Date Joined May 2008
Total Posts : 25
   Posted 5/21/2008 11:50 PM (GMT -7)   
Yes or maybe even an alternative treatment? I see Dr H as well. The only 2 symptoms I have left are horrible flu-like fatigue and neuro-related (which of course were always my 2 worst symptoms) Ive gotten rid of everything else besides those 2
Dx: Lyme, Babs, EBV
 
Undiagnosed for 3 years
 
Started treatment in August 07
Cedax:                   400 mg 2x day for 3 months
Doryx and Flagyl: 1 month
 
Took 2 month break while searching for new LLMD
 
Current Treatment
8500 mg Amoxicillin w/ Probenecid
500 mg Zithromax
400 mg Plaquenil
4 tsps Mepron
B12 shots
Vitamin D IU
Enula and other herbs
Chemet (For Lead)
 


ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 5/22/2008 5:16 AM (GMT -7)   
I have the (sometimes) horrible fatigue and the muscle pain/cramps/twitching/burning in my left calf. I do sporadically have others but they are all very tolerable. I think the Bartonella is the culpret for my remaining symptoms. I am currently on Bicillin shots-Rifampin and Plaquenil. That is why I was thinking CFS because I have had the fatigue for soooo long. I will catch up with you over on the Lyme board. Dr. H is great isn't he. I actually see his NP John who has been wonderful.

LV
Regular Member


Date Joined May 2008
Total Posts : 23
   Posted 5/22/2008 8:05 AM (GMT -7)   
Hi Kim, so gald you've been able to find such a great doc. A couple of quick thoughts: muscle twitching (fasciculations) are very much neurologically based so even though cognition may not be a problem with your brain has probably been affected even to a minor degree. Have you tried Magnesium at all for pain/cramps?

I have had CFS for so long and "been there done" it but my onset was similar to yours that I will be seeing an LLMD soon. It does sound like you're on the right track, perhaps a bit of "tweaking" to your protocol might help. Good luck and keep us posted!!

ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 5/22/2008 5:26 PM (GMT -7)   

Hi LV-I have been on Magnesium for years but it really doesn't seem to make a difference. I don't have the cramping like I did. Most of the time it feels like they are going to cramp but don't. I even went to two neurologists who were clueless about the twitching and cramping etc. One even said the twitching was caused by high arches in my feet..WHAT!

I am very lucky to have found a doctor who is knowledgeable and knows how to treat me. I had to travel out of state to NY to find one but it was worth it. He has all kinds of ideas about what to use if one treatment doesn't do the trick for me. I hope you find the answers you are looking for too. If you need any help or have any questions I will keep checking over here. I am usually hanging out at the Lyme forum.

Kim


missy274
New Member


Date Joined May 2008
Total Posts : 9
   Posted 5/25/2008 9:54 AM (GMT -7)   
Hi I have a suggestion for you to look up is called mycoplasma. It might not be of any use but everything is worth a try. This cannot be detected by any test but the test for Mycoplasma. It is a Bacterial infection that only can be helped by certain antibiotics.
Best of luck.

ktp812
Veteran Member


Date Joined Jul 2007
Total Posts : 715
   Posted 5/25/2008 9:59 AM (GMT -7)   
I have been tested for everything by my LLMD and I do mean everything. He actually does suspect Mycoplasma even though I tested negative. He is adding abx very slowly cause I have problems with my WBC. Thanks

missy274
New Member


Date Joined May 2008
Total Posts : 9
   Posted 5/25/2008 7:24 PM (GMT -7)   
I found out today that mycoplasma can actually sometimes come out negative if not symptomatic at the time of the test.

shelly23
New Member


Date Joined Jun 2008
Total Posts : 5
   Posted 6/27/2008 12:12 PM (GMT -7)   
hi i am new to this chat tryong to figure out what is wrong with me. My heart races, i have twitching all over all my extremites ache and are weak. I recently moved and when i did i have had the worst possible doctors. i saw a natropath and and md, the natro path guessed and said it could be als, the md said its aniexty. all i know is my heart raises with pain sometimes fatigued and weak. Also about 4 months ago i was bite by what i think was a bed bug. the md only did a cbc with diff, didnt check my throyid and hasent refered me to a nerologist. any sugggestions, were these symptoms of anyone els. my body feels like i am getting over a bad flu, but no normal flu nausea or diahrea ! please help :(

pj1954
Regular Member


Date Joined Feb 2008
Total Posts : 57
   Posted 7/17/2008 11:33 AM (GMT -7)   

Recently the Centers for Disease Control and Prevention (CDC) have recognized Chronic fatigue Syndrome (CFS) as an actual disease, and not just a multitude of symptoms. This is a major breakthrough for those who have suffered from the disease for many years. More often than not, CFS patients have endured the scorn of both doctors and the general public. For ages, those who have battled CFS have been called lazy, hypochondriacs, and leeches to the social service system, for the help they needed and received, due to their illnesses.

It is estimated that more than 40 million Americans suffer from Chronic Fatigue Syndrome—now classified as an authentic disease. The CDC believes that only 20% of CFS sufferers actually get diagnosed. This is due, in part, to the lingering belief that CFS is a psychological illness and somehow imagined. CFS is characterized by incapacitating fatigue, sleep difficulties, problems with shortterm memory and concentration, and typically accompanied by flu-like symptoms.

In August 2006, Dr. Kenny De Meirleir, Professor of Physiology and Internal Medicine at Free University of Brussels in Belgium, released a new study on the advances of CFS testing and treatment. The study showed a wealth of confirmed biochemical abnormalities in CFS patients. Dr. De Meirleir’s research showed that CFS patients could be differentiated from healthy people with 99% accuracy based on his test of low molecular weight (LMW) RNase L in the blood.

Dr. Jonathan Forester, of Pineville, Louisiana has been studying CFS in his medical practice for over 20 years. At one point in his medical practice he began noticing the striking parallels between his CFS patients and his Lyme disease patients. He began testing his CFS patients for Lyme disease and over 90% came back positive for Lyme. Of those 90%, when he began treating them for Lyme disease, 80-90% were able to get into complete remission of the disease.

Dr. Forester said, “Until proven otherwise, Chronic Fatigue Syndrome is Lyme Disease.”

Lyme Disease has been given the nickname of “The Second Great Imitator”. The original “Great Imitator” was syphilis, which is a spirochetal disease just as Lyme disease is a spirochetal disease. Lyme Disease is notorious for being difficult to diagnose and treat due to its similar symptoms to other diseases such as Multiple Sclerosis, ALS (Lou Gherig’s Disease), Lupus, CFS, Fibromyalgia, Alzheimer’s disease, and Parkinson’s disease. Many a Lyme patient has received one or more of those diagnoses prior to getting their Lyme diagnosis.

In recent studies it has been shown that Multiple Sclerosis has been thought to be of a bacterial origin. When treated with long-term antibiotics, many of the MS patients had a significant return of bodily function. Many who had been in wheelchairs are now walking after treating with long-term antibiotics. New studies in Alzheimer’s patients are showing the borrelia spirochete in both spiral and cyst forms in almost 95% of the autopsied brain tissue samples. Similar results have been shown in studies involving ALS and Parkinson’s disease.

I just find it curious that all these diseases that Lyme sufferers were misdiagnosed with having, prior to getting their Lyme diagnosis and treatment, are now actually responding to the Lyme treatments of long-term antibiotics with great results and return of bodily functions!

Could it be that there may be one common denominator? Could the borrelia spirochete possibly be behind all of these? I suppose only time and more research will tell. At least for now, we know through research that ALL of these diseases are responding to one common treatment…the long-term antibiotic treatment used for Lyme disease. Shakespeare wrote in Romeo and Juliet, “What’s in a name, that which we call a rose, by any other name would smell as sweet…”. Shakespeare makes a good point! Call it what you want…ALS, MS, Parkinson’s, Lupus…. but if it responds to Lyme treatment…give me the antibiotics and call it want you want! I prefer to keep my ability to walk and form clear thoughts. Let the scientists argue over what to name it…just give me the treatment that works!

After all, it should be an issue of informed consent, right? In a perfect world, patients would be made aware of these new research findings and given the chance to make the choice of available treatment options…but alas, we live in a day where every research foundation wants to collect dollars for their particular designer name disease, while the patients are left of suffer. Let the researchers call a rose “a daffodil” if they like, just give us the water for the roots!

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 3:22 AM (GMT -7)
There are a total of 2,732,437 posts in 301,021 threads.
View Active Threads


Who's Online
This forum has 151185 registered members. Please welcome our newest member, monjurmuradd.
172 Guest(s), 1 Registered Member(s) are currently online.  Details
Lamilla


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer