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Has anyone else had this experience? Can herbs or drugs provoke a neuro explosion/ major MS flare? Do my symptoms sound like MS? I"m copying from my CCVSI post. Thank you for any feedback/insight.

Also curious on success stories for abx- there don't seem to be many that I can find. Torn about that path since I"ve become so sick from first herbs and now a few weeks of pharmecutical drugs.

Hi All-

I'm new to this forum. I"m 48. I've not been diagnosed with MS yet. I'm trapped in the is it MS or Lyme or? . Fibro 1998, Optic neurits 2006 with increasing neuro symptoms-MRI's normal 2006 and 2008. Currently housebound since trying my first abx/antifungal (flagy/diflcan for fungal treatment-1 week flagyl, 3 weeks diflucan at end of November). Went from working/living in November (from home with bad brain fog, increasing urination, disrupted sleep, some jerking, and twitching in legs)- to now non functional -it's almost like the drugs/and some herbs/sauna triggered an AI reaction? not sure-but now jerking all over, twitching all over, intense brain pressure, body weak /shaky including neck muscles,insomnia (2-3 hrs sleep on medication), head jerking , very dizzy, problems speaking, burning sensation up back/arms,sometimes swallowing difficulty, eye pain/pressure, and now for the first time numbness on left side that is not going away, left foot not picking up as high as right, spacial awareness, balance, gate, etc etc. The head stuff combined with weak/jerky neckband insomnia is almost not bearable. Basically on the couch/floor home bound for past 3 months.
Similar experience but not to this degree 2 years ago on herbs- like an AI flare that laste 4 months-but was functional and recovered but not back to baseline. I feel like treatment has triggered two major MS type neuro flares if that makes sense? Doesn't feel like a "herx to me-since so severe/so long and explosion of new neuro symptoms that developed after stopping herb/drugs?

Anyway seeking a big name LLMD in NY-BUT terrified of aggressive treatment since just a few drugs put me in this state and I'm still on downward spiral with new symptoms weekly. This week so dizzy I can barely walk. All from just a few weeks of drugs at end of November.I have been chemically sensitive for past 20 years and always sensitive to drugs.

Have an appointment for neuro and MRI . no contrast die since I feel like I had reaction to contrast die (first time I had major jerking at night) . I've always been senstive to everything. Scared about getting lumbar punctar. Is that really necessary? I'm so sick now don't want any extra stress on the body.

Sorry for long winded story-

Pursuing all options given how non functional I now am so I want to pursue getting evaluated for CCSVI.

Does anyone know of a location to get evaluated or how to go about it int the Boston area? I also see on Sammy Jo's site that there is facility listed in Albany NY? Would prefer Boston since so sick since Albany is much farther for me. With the highest rates of MS in New England and major medical instutions/research in Boston I would think some facility in Boston would be offering this?

(on LDN very low dose-1.0M since sleep is already bad-and got new symptom like permanent numbness 2 weeks after starting LDN)Also raised bed 3" this week.

Any advice/comments welcome. Trying to climb out of hell. Sad

Selma -- Because you wrote:

Any advice/comments welcome.

I feel free to offer my unconventional ideas.

I do not believe that MS is an autoimmune disease at its foundation. I think that excess insulin causes damage first in the blood vessels and this damage initiates an immune response. I know that my insulin level is high; I try to limit anything that will cause my pancreas to produce more. For me, I follow a low-carb diet and I avoid artificial sweeteners which also promote insulin production. I try to avoid polyols (sugar alcohols) like sorbitol and mannitol, as these also affect my insulin level. (This is especially difficult -- I have found sorbitol in toothpaste, mouthwash, and even in fish oil capsules.)

Have you tried a change in diet, maybe even trying low carb? As much exercise as you can manage will help reduce insulin as well.

Best wishes.

Lynda-

12 years ago when diagnosed with Fibromyagia I found the low carb diet cut my pain in half. Eventually the pain got better and I continued to eat a health diet, spelt nowheat , free range meats etc.

Since this crash that started in early December I've los 15 lbs-getting really thin now. I've been eating low carb and only non gluten grains- millet, brown rice , quinoa, and starchy veggies for carbs, a lttile fruit. I'm still in this downward spiral even though my diet has been like this for about 3 months. I've also been trying to juice/do green smoothies.

I've never tested high for sugar levels-

How do you keep the weight on/not get too think and eat low carb-

Also do you follow the very low saturated fats theory? I've not done that but in past month trying to eat more fish , lean chicken etc ,instead of my grass fed beef. For breakfast I'm eating free range eggs and maybe a peice of millet/rice yeast free bread, millet/ with berries, or s berry /fruit smoothie with raw egg/unsweetened almond milk.

Diet doesn't seem to be helping me get out of this cycle I'm in. Would be greatful for any suggestions.

I know horsechestnut triggered a disabling relapse in me when I took several grams a day of it alone. I found other herbs like ginkgo more helpful. I always found flagyl awful and my symptoms invariably deteriorated significantly on it. I was on the antibiotics for 2.75 years and in the last year suffered 2 disabling relapses on it whilst separately trying an infrared sauna and then superoxide dismutase. I never had any sustained improvement on the antibiotics so gave up. You do seem to have had quite a reaction there. Perhaps try some of the less harsh antibiotics? Minocycline has at least been trialled positively in MS in combination with copaxone...

This one is out of the box, but have you looked at Porphyria. Porphs are highly chemical/food sensitive. A lot of the symptoms are similar to MS. Worth a read on it anyway. It is supposedly a rare disease, but from my investigations it's not really that rare, just underdiagnosed.

Do you know how this is diagnosed ? Is it something a neuro can do or will know about? For food sensitivity testing I don't really test positive for anything.. however I know eating foods sometimes creates alot of throat clearing for me....... thx.

Selma -- here are some of my thoughts in response to your post,

I've never tested high for sugar levels-

But has a blood test been done for your insulin levels? Insulin is necessary for blood glucose to be stored as fat; if you are not storing fat, 1. Your body is not making enough insulin. Or 2. You do not have enough glucose in the bloodstream. Or 3. Your cells are resistant to insulin and will not allow insulin to ferry glucose in for fat storage. In reaction, the pancreas produces more and more insulin in an effort to MAKE those cells take in the glucose. As if shouting LOUDER and LOUDER will get its way!

From your description I would guess that #3 fits your situation--you are insulin resistant. A fasting serum insulin test could supply more proof.

As for my diet, I am not concerned with saturated fats. I eat bacon and eggs for breakfast; I enjoy butter, beef (occasionally steaks), pork.

I am not a heavy person; but I think my body is producing cortisol which puts glucose into my bloodstream. I avoid trans fats, which promote insulin production. I avoid artificial sweeteners which also promote insulin production. I also avoid polyols, such as sorbitol and mannitol -- these also affect my insulin levels.

I'm not sure I have any suggestions there for you, but I am glad to share my current action plan with you.

Lynda

Selma-
several thoughts--
what about a very strong series of different probiotics? Antibiotics and drugs knock out the good bacteria, and you need these good bacteria for many things, including digestion. Once digestion better, you often react less to environmental toxins, etc.

have you gotten a liver blood panel done? Liver problems can create all of the problems you are experiencing.

What about supplements? very important, esp Magnesium with all you jerking etc. (only Mg to use is one with the Albion chelation process--the only 3 companies using this are Doctor's Best, Carlson, and Solgar).

Nuts are a great way to gain weight--best are walnuts (both omega 3 and omega 6 oils in them)--best way to eat is to soak them overnight--this takes off the phytic acid, so can absorb better

Shye-My doctor checked my liver at my physcial/not sure if that is liver panel? I think so-everything is good.

I have had the genomics liver /detox panel and it says my phase II gly.. something doesn't work right so I have problems detoxing medication.

I have not done alot of abx- only the 1 week flagyl/3 diflcuan that spiraled me into hell ( i was not perfect before but functioning wiht heavy brain fog, some jerking , sleeping but not great before, nothing like this hell I'm currently in and it has now lasted 4 months with numbness now spreading this week from left side to right)-new additional symptoms each week.

so, with the flagyl and diflucan history, you need to get the probiotics--Culturelle is a good one, used with at least 10 Billion of Acidophilus and Bifidus.
Diflucan is the thing that almost destroyed my liver---it was the last straw--again, get a liver blood panel--just checking your liver (if you mean physical exam) is not the key--you need the bloods to see if inflammation, etc going on. And a liver panel is not routinely run. Silymarin is both healing and restorative herbal for liver, as is Alpha Lipoic Acid; both help with the problem with the phase ll that you have--diflucan will massively aggravate phase ll problems.
Again, magnesium would be one of the first things to supplement with, given the symptoms you have.

I'm still in hell- still not sleeping and neuro symptoms not improving. Burning sensation spreading. Numbness getting worse on left side.

Saw local neurologist on wed. He wants to look at all my past data and MRI's etc (no lesions)-he suggested a sleep study! I told him I'm not sleeping because of what's going on in my body not the other way around. Lack of sleep causes optic neuritis and numbness, etc? He also mentioned CFS. Even though I'm weak and shaky since I still had good muscle strength and could walk a straight line I don't think he suspected MS. He wants to see me in 4 weeks- he ordered no additional tests. MY PCP ordered a brain MRI (at my request) . Last MRI was 2007. Neuro did not think cervical /spine MRI was necessary!

I know I'm an odd duck. I feel like dieing every day and have severe neuro symptoms and he is talking about a sleep study and endcrinologist?

One side note- I slept decent that night- most sleep I'd had in 4 months since this neuro explosion induced by the drugs. I noticed in 2006 when the neuro opth would like at my optic nerve with the bright light I'd sleep good on those nights. He did look at my eyes /optic nerves with bright/light-and I could sleep felt calm that night/nervous system relaxed. I wonder if that is the connection. Maybe my husband could get one of those instruments and shine it my eyes every day!!! I know I'm an odd duck. Anyone else had that experience?

Really- I am sane- have an engineering degree at top of class - worked for major computer company for 26 years prior to my LOA starting March1. I know I sound crazy! But I'm not!!

I do not want the lumbar puncture given how sick I am and this doctor didn't seem big on testing me before he looked at the reports from 2 years ago and data from my pCP. Are there any other tests I should be getting that are not invasive?

I wish there ware a way to easily test for the CCSVI. I probably don't have it given what an odd duck I am. But sure would like to know-to sick to travel right now.

Selma -- YOU ARE NOT CRAZY! And you are no more an odd duck than I am. (You may find no comfort in that last sentence since I am known here for my unconventional ideas on insulin.)

With my unique ideas, I think it would be helpful to see an endocrinologist. I suggest you ask for testing of insulin, as well as glucose, cortisol, thyroid hormones.

As to the light in the eyes experience, full spectrum light received through the eyes resets the body's circadian clock and lowers the glucocorticoids (which raise the glucose in the bloodstream). I think this explains the lower risk of MS with proximity to the equator. And could explain your experience.

In my opinion, it wouldn't hurt to invest in some full spectrum light bulbs and try to eat breakfast or read for 30 minutes with exposure to them early in the morning. But then, I am willing to try experiments that can do no harm. My philosophy is, "What have I got to lose?"

As for a lumbar puncture, I have never had one, but I can't imagine going through one when I didn't feel good in the first place.

You are in my thoughts and prayers.

Selmahope wrote:Do you know how this is diagnosed ? Is it something a neuro can do or will know about? For food sensitivity testing I don't really test positive for anything.. however I know eating foods sometimes creates alot of throat clearing for me....... thx.

Diflican is not Porph safe. Neither is a low carb diet. Porphs need to eat high carb, low fat, bread, rice, potatoes, pasta, especially during acute attacks. Eat high carb every three hours, no additives, no colours, no preservatives. High sugar help attacks too.

Porphyria can be tested by urine, blood, faeces tests, but porphrins will only usually show up during the acute attack, also genetic testing follows from that. It's presumed to be rare so most doctors know little about it.

You sound just like my sister! We are trying to get a diagnosis now, but it's really difficult.

My last two attacks were set off by dental local anaesthetic injections.
Also can be triggered by the contraceptive pill (or hormone therapy), high iron levels in the body, heavy metals, drugs, or combinations of above and stress.

You may notice monthly cycle symptoms, getting worse in the luteal phase prior to menstruation.

None of us have tested positive to food allergys. It causes an intolerance rather than an allergy.

Worth a try to see if you feel better.

Read up on it and see if it fits.

All the best, I really feel for you, my last three years have been the pits!
My main trigger was the iron overload. The injections just tipped me over the edge.

Can porph cause all the symptoms I have? I have so many- The worst is the feeling I struggle to keep my head up, neck shaky and so weak, and the constant dizzy sick feeling in my head total insomnia -my entire being is affected-I"m so sick I can't watch Tv, can't cook/help out, read a book, nada! And so scared that I am effected in so many ways with motor skills, numbness, jerking,twiching eyes etc etc-with no improvement since downward spiral 3 months ago. At least this weak I didn' t get a new symptom! At least I don't think so. I'm frightened at how quickly this has progessed/how sick I have become neurologically since onset of optic neuritis 3.5 years ago. Any worse and I will be bed ridden! On the outside I look normal!

I have had low iron ferritin levels as long as I can remember/since testing began in early 20s. Could never donate blood, Is this consistent with porph?

When I did detailed urine testing with great plain labs , in additon to yeast being high-- (and extrme diet, nystatin, lowered it but never brought it to normal range)- I also test very high for oxalates. Not sure what I would eat if I also eliminate oxalate foods when trying to maintain a gfdf diet!

Wondered if anyone in MS world has spoke about high oxalates and if that is something I could consider.

Tried Gabapentin last night that neuro prescribed. It did not help me sleep. I hate taking drugs/i feel they are so toxic to my systme, but I desparately need to figure out how to get sleeping again. Now 4 months with average of 2 hrs sleep per night.

when will this nightmare end?

Selma -- Believe me, I understand your desperation. I am not a physician, nor am I an engineer as you are; but I try to be logical about this mystery called MS.

Bethr and I present the common situation for MS patients: she recommends following a high carb diet; I recommend a low-carb diet. We subscribe to different ideas causing MS -- neither point of view is accepted yet by conventional medicine as the definitive answer. You can only research the information, discuss possibilities with your doctors, and make your own choices. (BTW, I have read that carbs will increase mucus so I wondered if you have noticed a relationship with THOSE foods when I read that you wrote, "however I know eating foods sometimes creates alot of throat clearing for me.")

With your background and situation, you have much to bring to this process. First, take a deep breath. Now, gather some information and try one action plan. If that one doesn't work out, move on to the next one. Unfortunately, this is where each of us finds himself. We do not have THE answer, but each of us will try to help each other -- offer support and suggestions.

1.Find a good team of doctors -- an internist or GP, maybe an endocrinologist, too. Maybe an ENT is necessary to rule out a sinus problem as the cause of your dizziness?

2.Establish your baseline -- a thorough physical exam, thorough blood tests (keep copies of results in your own file)

3.Start building and reading your own library of MS information.

Miscellaneous thoughts: You said that yeast was found to be high -- sugar (i.e., carbohydrates) is a source of food for yeast, I believe.

I encourage you to continue to share your thoughts, fears, and observations with us here. We WANT to help in any small way we can. We are ALL in this boat together!