I've been on abx for 2 years, nothing has improved my strength. Now my neuro thinks maybe I have ALS afterall. I am in despair.
Should I go to another ALS clinic for a 3rd opinion? I hate all the tests, especially the EMG!!!
Posted by Dekrator48 (Member # 18239) on :
I'm so sorry that you are suffering like this.
I don't know what to tell you, except that I am praying for you with all my heart.
Posted by fflutterby (Member # 28081) on :
What Dr do you see? Is it possible to switch LLMD's? Praying for you too.
May God wrap his arms around you.
Posted by glm1111 (Member # 16556) on :
I too am sooo sorry you are in such despair. Have you tried any antiparasitics? Wondering if the salt/c protocol could help you.
Maybe go to lymestrategies (group on salt/c) to see if anyone there has been dx with ALS and has done salt/c and had success. Praying for you.
Gael
Posted by lyme in Putnam (Member # 11561) on :
God bless. Thinking of you.
Posted by momindeep (Member # 7618) on :
Dekrator posted an article on Facebook, I think, that was a study done about getting to the bottom of diseases that don't have a known cause. It said something like some scientists believe that illnesses like MS ALS? could possibly be caused by leaky gut or infection/septic in the digestive tract.
I see you were diagnosed with C Diff.
I don't know much about these things, but for some reason I am telling you this? Ask Dekrator if she remembers posting such an article...if she didn't, then I read it on the net...the correlation between unhealthy gut and illnesses with no known cause...and I would of been researching MS.
Sorry to be so vague...but I thought I should mention this.
I will be praying for you.
Posted by glm1111 (Member # 16556) on :
Agree with momindeep about infections in the digestive track. Causes malnourishment and would contribute to muscles not receiving the proper nutrients.
If it were me and knowing what I know now, I would give antiparasitic herbs a shot along with the salt/c.
You have nothing to lose, and hopefully more to gain. I was on my way out of here after 4 yrs of abx, and by getting rid of toxins/bacteria/parasites in my gut saved my life.
Gael
Posted by Robin123 (Member # 9197) on :
Pam Weintraub wrote about a doctor dx'd with ALS in her book, "Cure Unknown." Are you aware of this report? He treated for Lyme and got better.
Posted by Marz (Member # 3446) on :
I was just going to mention the Dr you're talking about Robin.
I got the book in the mail yesterday and was just reading here and there. That MD says if treated before it's extremely severe, it can be turned around.
He's also in Under Our Skin
Could you get to Colorado to see him? Or could your LLMD work with him by phone consult?
Posted by seibertneurolyme (Member # 6416) on :
Can't remember if you have ever treated for bart or babesia?
Seems like almost all the ALS patients with Lyme also have babesia.
Would be very unlikely that you only have lyme and no coinfections.
If it was me I would be trying to determine if there is a coinfection that needs treatment. I would do a Clongen bloodslide or a live blood analysis like hubby had done recently.
Can't remember -- maybe you already tested for the FL1953? That would of course be another possibility.
I think if I was in your shoes I would be looking for the best Chinese herbalist I could find. The ones who grew up with herbs in China can sometimes really work miracles. Sorry but I do not have a name.
Going to another AMA neurologist will just get you a label and very little real help in my opinion. There are only a handful of LLMD neurologists and most of them are pushing IVIG but I would go that route rather than a traditional neurologist.
Keep looking. Post on all of the different lyme forums and maybe someone can point you in the right direction.
Bea Seibert
Posted by Dekrator48 (Member # 18239) on :
I haven't found the article yet, that momindeep is referring to...I went back a few weeks on facebook but it may have been further back than that. I'm still looking.
I wonder if the Paleo diet would help you?
Have you read Dr Terry Wahls information about minding our mitochondria? She reversed her progressive secondary MS by completely changing her diet.
i am so sorry hon that you're going through this crap. sometimes life sucks, doesn't it?
have you had igenex test? assume you have. was it positive?
i'd say find a different llmd if you can. have you tried any herbal treatments or for parasites like humaworm or something?
gee, i wish i could help.
Posted by MADDOG (Member # 18) on :
Some how get cipro,two weeks is all it will work.
One time per year.
Then switch to suprax for 30 days.
Then go to deep intramuscular twin penn,bicillan.
30 days.
If you have not had herxhimer reactions then improvement.
Short term ,then I would look for other problems.
I am not a doctor just a 28 year Lymie,I don't mind the name.This is an expirenmental protocall.
I don't have a clue if it will work for you.
MADDOG
Posted by susank (Member # 22150) on :
To best confirm a Lyme diagnosis I suggest you do the new culture test from Advanced Laboratory Services.
Have you had your Immunoglobulin total serum and subclasses checked? If you are deficient then I don't know how one would get well. Read the many posts on CVID and IVIG.
I have read where some folks are "refractory" to Abx. Unresponsive to treatment.
I would also consider seeing a Classical Homeopath. I previously poo-pooed the idea of homeopathy. Recent reading has changed my mind. I am reading, "The Homeopathic Treatment of Lyme Disease" by P.A. It is a real eye opener.
There is a world of difference in buying homeopathic remedies to try vs seeing a doctor trained in CH. The gist is - its not the disease/diagnosis that is the focus - it is a detailed exam of the patient - mental and physical symptoms - from which a remedy is prescribed.
The book I am reading - I found very interesting the use of homeopathics during epidemics in the 1800's. For example homeopathic Belladona - and how people that had taken it as a remedy for something else - had a much higher survival rate during epidemics from various pathogens.
Unless this is a bunch of hooey - but I don't think so.
Please research this.
I am hoping to see a CH soon - as in the next two weeks. If I last that long. I am in bad shape.
Posted by nonna05 (Member # 33557) on :
I'm in Colorado. DR.M is not practicing anymore, but a clinic with a person he trained is here. He had the ALS diagnoses and the was going down hill fast.
He remembered that before a trip TO Africa he had taken malaria defense drugs and for some reason felt GOOD. That's before he was bad off of course.
So he looked into it more ,started to take combo drugs ,strong doses and could get around and got better .
There's also a doctor here who had a patient with ALS and was very bad after two years in treatment he is out of wheelchair and getting better.
If you want to PM me for a bit more info please do.
I know it's far, but maybe the one doc would to a phone consult .
You could send him some records of test etc .. He is also starting to work with Lyme .
He's starting from a much higher level of care and knowledge than if it was just a MD taking a new interest in LD.
Posted by randibear (Member # 11290) on :
hmmm, interesting.
i've been travelling for years. south america and caribbean mostly. refuse to go "inland" tho. i stay mostly around the beaches with the shopping.
but for those who DO travel that's something to think about.
and i do alot of camping and outdoor stuff, well, at least i USED to...not everything is indoors.
Posted by WendyK (Member # 18918) on :
Very interesting, since I've just recently made the connection with a trip to the Amazon last summer, and feeling so much better afterwards, and the malerone I took for a month for malaria preventative. Just started the malerone again to see if the same thing will happen!
I hope you are also able to find something like that to help out. Don't give up looking for the answers!
Posted by angelp (Member # 36878) on :