This Is MS Multiple Sclerosis Knowledge & Support Community

Hi-I'm new to this forum. My history was Fibro 1998 (started with headaches, neck pain, stiff neck, spasm in neck then spread, system in over drive, insomnia), optic neuritis 2006 with vision loss, Extreme brain fog, eye pain, foot drag- hand jerking, neck jerking , some leg twitching- this was minor until neurological explosion/MS flare? Seemed to powerful to be a herx from herbal lyme protocol in 1997- I had an explosion of neuro symptoms: balance, jerking/twitching increased alot, problems speaking, extreme brain fog, balance, gait, hyper reflex's, no sense of spatial , some numbness but not lasting. Took 5 months to recover from that(stopped all the herbs at time) but not back to baseline. LDN 1 year and was stable but did not improve-still bad brain fog, leg twitching etc. Declined fall 2009- more jerking, twitching, felt weak ,bad brain fog/cognitive. November 2009 did fungal treatment/candida of flagyl for 8 days/diflucan 3 weeks- huge reaction to flagyl by day 8 tongue turned yellow, intense brain fog/non functional, stopped sleeping, lost all taste all appetite. through in a high temp sauna Was really sick after those drugs and it feels like it triggerd an MS flare? Became non functional by end of December/home bound: jerking /twitching/weak neck, weak leg, arms, gait off , balance, coordination, brain fog, head dizzy and shaking inside, eye pressure/pain ,neck jerking huge incrase , total insomnia, dizzy to the point of difficulty walking, now numbness on left side that has not gone away-arm/hand/foot/leg. Some on right-can't drive or function-need to lay down alot because of weak neck and head pressure- etc. still feel like I'm declinging 3 months later. I was working in November (from home) now I'm on a LOA for medical.

I have an appointment with a neuro next week/will get another MRi (but no contrast die/gadolinium- I also felt like I had a reaction to the contrast die !)

Now my question-- does this sound like MS? 2006 and 2008 normal MRI's.

Friends say I need to do heavy duty abx with the famous intense LLMD's. I am scared to death since both herbs and now drugs have triggered a neurolgical explosions/flares from hell. 3 months later this is still gong. I feel like my body can't tolerate the abx at this point. I almost felt close to seizures the way my head jerks forward and pressure in eyes/ brain at time. And I'm chemically sensitive/always been sensitive to drugs. My genomics liver panel shows I don't detoxify phase 2 /medications.

For those of you following the abx route on wheldon protocol or lyme protocols= have you heard of people with reactions like mine to abx? My fear is that feel so much worse over past 4 years from tryng to treat. I'm fearful since I'm not recovering this time and abx would make far worse. I know they say you have to get worse before you get better-

How successful has abx treatment been in general for MS symptoms/neuro from your experience following this and the wheldon/cpn boards? Have some people become much worse a a result of treatment? I'm terrified of how nonfuntional sick I am right now, but terrified of putting anythng into my body, and terrified of the whole IV ABX/LLMD from NY who I'm scheduling an appointment with.

Any insight would be greatly appreciated!

P.S. I remember twitching in college when I was 22 in my legs or something strange, also had headaches up back of my head since I wa young, now I'm 48--so I wonder is this lyme/infection or something I've had all along?

Hi
I don't know if you have visited CPn Help, if not, then I think it is really worth a visit. It will probably answer most of your questions.
Abx do cause a worsening of symptom but that is why you have to go very slowly and carefully with them. But overall, I think it is the best route!

Sorry times are so tough. I personally have never gotten a clear answer from all the Drs I have seen in 5 years 2 LLMDS. I was Diagnosed with MS 5 years ago with positive lyme tests. None of the Drs in my State would talk about the Lyme.

So I went 3000 miles to a Nuero LLMD that did put me on IV antibiotics I was sick the whole time with existing symptoms but never new ones. That is how I feel on antibiotics I never seem to have new flares just lots of old ones.

Well I did get better almost 11 lesions disappeared my Local Drs were shocked. I had a Baby stayed on oral anticiotics this whole time, when I stopped after breastfeeding bam 13 new lesions all new symptoms and now walking with a cane. The Drs here didn't think antibiotics were the answer.

So back to the East Coast to see my LLMD and this time he thinks he got rid of the Lyme and that 4 years ago another LLMD tested me and I was positive for CPN, but was never treated. So he put me on a CAP Protocoll. I was very scared beacause i didn't feel it was strong enough for Lyme but after prob 9 months I feel like it is working I am slowly recovering and having lots of old symptoms but no new flares.

I have given in recently to the MS diagnosis and am going to try Copaxone not sure if it was my idea or my Local Nuero has finally giulted me into it so good. But when I lost the use of my legs that scared me so much I just want to do everyhthing I can to be mobile. I believe antibiotics are what helps me and i hope the Copaxone goes smooth.

Not sure if I answered any of you questions or just rambling my story. I hope something in there helps. I am still looking for answers.

Thank you Shaka? Who was is your LLMD? Dr.H by chance out of NY.

Yes I'm terrified since herbs and now just a few drugs provoke a crash that yields so many symptoms I did not have before. I'm scared. Still in downward 4 month cycle from just a few drugs. That was just flagyl/diflucan for a fungal cleanse and through in a few herb/tea for lyme. I'm non functional miserable in agony 7x24 and not sleeping on top of it for 4 months now. I have app't with Dr. H may 5-but terrified about putting more drugs -but know I have to do something.

My most recent app't with Neuro/MRI shows no lesions-and he says no MS-but I have numbness on left side, left side weak,optic neuritis, shaky all over , neck is weak, dizzy, jerking, twtiching-most of this all since early December. Before i had bad brain fog, some jerking, some foot scuffing, and some weakness on left side.

It's good to hear that abx have helped you--so did you regain function while on abx? (i know recently it sounded like you've lost some).


Good luck on copaxone. Maybe you should also look into CCSVI and try the inclined bed therapy?

You can also combine LDN with Copaxone. not sure if you've tried that.

Hi selmanhope,

Your blog was one I had to be notified when there was a posting. I am usually at CPn Help, but your question is one that I am compelled to reply to.

My answer is a fervent affirmation of antibiotics. I am on five currently, and except for MWF, when I take Azithromycin, I am quite well. I have come very far in five and a half years from being on a walker to being able to do a full day of work - most days - with our herd of wonderful dairy goats. I was on Avonex for seventy-seven weeks and gained nothing at all, continuing to decline the entire time.

Rica

Selmahope, Your story sounds a lot like mine. I was sliding fast, with most all the symptoms you describe, when I learned about antibiotic therapy. I firmly believe it saved my life.

Along the way, I also learned that the reactions I had to two antibiotics, Cipro and Erythromycin, which I thought were allergies, were really just my body's violent response to the death of cpn bacteria. I actually paid an allergist to test me in his office through the course of six hours, just to make sure, before I began the protocol in earnest.

So, yes, we've heard your symptoms and your sensitivities before. And, yes, the protocol is effective. I'm back to wearing high heels and walking like a girl, instead of like a lumbering crocodile.

Is antibiotics treatment specifically targeted at the Lyme disease theory or a shotgun approach just in case it is another bacteria?
Only just discovered possible link between Lmes & MS

The antibiotic protocol we're talking about here isn't a scattershot approach, at all. Quite the opposite; it was devised to kill cpn and it was directed at MS patients. Lyme wasn't part of the scenario when Sriram and Stratton developed this at Vanderbilt University.

It just so happens that some patients, and some doctors, think this cocktail will also kill Lyme. (Many Lyme patients have posted that the dosages are not as high as those given to them by LLMDs, however.)

The antibiotics used here are broad based antibiotics but the treatment is meant for chlamydophila pneumoniae. Of course, if you happen to have lyme disease as well, that will also be treated. My husband, the high level microbiologist, says that the treatment is adequate for lyme but other doctors say that you need more. I don't know since I didn't have lyme but C pn.

I don't like the phrase scattershot approach, nor shotgun approach to which you seem to have edited it. Without broad based antibiotics the world would be a much sicker place and I am saying this having only taken two doses of antibiotics before this, once for scarlet fever when I was six and once in my twenties for an infected mosquito bite, both for five days at a time.

Sarah

I was first diagnosed with MS, and this year I sent blood samples to BCA in Augsburg, Germany, where I was tested for Lyme (4 different tests), ehrlichiosis, babesia, Cpn (2 tests), mycoplasma and anaplasma based on my symptoms. I had Lyme, ehrilchiosis and mycoplasma pneumonia. It was an immense relief to know for sure which infections I was suffering from. Lyme is very difficult to test and comes with co-infections that often remain untreated. Consequently, if only Lyme is treated, the patient might still be feeling sick after the antibiotic treatment is finished. Or, left feeling that the antibiotics didn't really work. Especially with Lyme, antibiotics cause herxheimer's reaction when the bacteria start to die, and can make one feeling quite sick. In that case, your doctor would be able to try other type of antibiotics. In Augsburg they don't use Flagyl, which usually causes herx.

As far as I know similar antibiotics could be used for Lyme and Cpn, but the medication should also be based on treating all the different infections and only an experienced doctor will be able to prescribe the antibiotics to fit the patient's medical profile. And finding a doctor like that is a problem.. Actually, getting accurate tests done is a problem.

i think the reason your getting such a strong herx reaction. is because your liver isnt processing the toxins. therefore not only do you get the immune response or the herx but you also get the toxins floating around because of a clogged liver. this wouldnt show on liver tests. I think alot of people with chornic lyme are dealing with this as its very common it healthy people to have some degree of liver stones so its only logical with unhealthy people having defciences and such that theres more of a chance to have this problem. If any of you have difficulty breathing or taking a deep breath. this is your cause. alot of people with lyme think its babesia but once they do the liver lfush(go to curezone to find out how to do it) a couple times they are upset they took drugs for babesia for so long.

Johnson, who are you talking to? This thread is two an a half years old.................Sarah