H1N1–"mild" GBS or CIDP or variant?

It really sounds like you have had the run around from everyone.

I am post GBS-May-2005. My symtoms started after a colonoscopy and like you I was misdiagnosed by 2 doctors the first week. I went out of town for a scheduled vacation at the Dr.s insistance and continued to decline. I wound up in the ER when I was mostly paralyzed which I have found from the forum and other research is where most diagnoses of GBS are confirmed. They did a Spinal Tap that showed the elevated protein for GBS and they gave me 5 IVIG infusions while in the hospital. I was then transferred to inpatient rehab for 10 days and released for outpatient care for 4 months. I went back to work after 6 months but it was a struggle for the first few months of working again.

I was told that if you go without the treatment for the 1st month that you really don’t need it at that point as most people are at the worst they will get after 3 to 4 weeks. After that time you will start to slowly improve. The IVIG that I received only stopped the progression
It takes a LOT of REST and TIME to recover. It has been almost 5 years and I believe I have recovered to about 95% on most days. Like everyone else if I get stressed or over tired my residuals are more noticable.

You mention you are still taking care of children at home and working. Is there a way you can have additional help or put you children in daycare as it sounds like a lot of stress that you are under. Stress is a big contributor to your symtoms and fatigue.

I hope my story helps in some way.

Hi Jessica,
Just an opinion, your body and your docs can give you the best indication. So…I would say based on the return of your reflexes, more than likely it was gbs. Flu shots can do that, as a matter of fact if you search swine flu vaccine outbreak 1076 you will find info on gbs/cidp and shot. The spinal probably would have been a good tool, but you can’t worry about that now. Something you CAN worry about is keeping watch over your current symptoms. If they worse, at the very least go to your GP to see if your reflexes are still there. If symptoms get worse, you may in fact have cidp. Typically, not always, gbs moves quickly, hours 24-72, but others can worsen up to 4 weeks. That was where our problem was, my son seemed to plateau at 4 weeks, the cut off between gbs dx and cidp dx. For the most part, it is true, after the initial attack of gbs, treatment is usually not pursued after an amount of time has passed. If it were cidp, that is another story. Yes, ivig DOES have risks, but in my opinion, the benefits outweigh them. W/out it, my son could not walk, use his hands, bathroom, breathing issues.

The gaberpat. is what youo would use for pain, Regarding the crying and sadness, totally normal with the situation, an illness and no dx!! Who would not be stressed. It has been a little over 3 years for us and I am still crying. Anyway, Cymbalta might help with the depression AND it helps with pain. The dry mouth also could be an autonomic response.

About the neg ncv/emg, you could have been tested too early being that is was somewhat of a mild attack compared to some. You might have to just wait it out to see if you worsen before you can get answers. I sent you a private message.
DAwn Kevies mom

Hi Jessicah,
As you read posts on our forum, you’ll find your symptoms over and over again in the onset of this condition. My heart goes out to you; when I read your 1st post, it was like reliving my own experience, minus the medical intervention. The run-around was similar.
Let us hope the worst is past. But your body is undergoing some damage, and only time will tell what has been affected. So please take good care of yourself, rest often, and don’t overdo, guard your muscles. Rebuild your strength with good food, lots of rest and find ways to take some of the burden off your responsibilites, ease up on the housework, get babysitters if possible. I think it helps to try to keep going, but be careful not to wear yourself out.
Gentle hugs ((( )))

Jessicah, for the first year and a half, I too would not wish this on my worst enemy. But now after the frustrations and suffering of 2 1/3 years I do wish that doctors knew exactly what we are talking about. Because I’ve found them to be very clueless and indifferent to the pain, crippling, the other debilitating effects, and the devasating effect all of this has on a person’s life.
…
I now think doctors should experiment on themselves.
They should take all the vaccines that the scientists produce for the public. They should try out all the drugs they prescribe to their patients.
And they should make lots of notes on their computers about all of the effects of these things on themselves, thus educating themselves better.
And then when the patients visit them in their offices, and the docs tell them how much pain and damage they’re dealing with, the patients can tell them that they look just fine, and remind them that their tests came back ‘normal’.
…
OK, GBS-CIDP are hell on earth; and we don’t want others to have to undergo the damage and pain that we are dealing with. I hear you.

Jessica,

I read your posting and so sorry to hear all that you are going through. I had none of the pain so that you are dealing with. The first time, it was mainly in my arms, like you I couldn’t hold the hair dryer and do my own hair. Then my legs were getting heavier and heavier, like they were lead. I had to pull myself up the stairs. I had a foot drop that when I was walking, it was like my foot was slapping down, not realizing that I couldn’t lift the front part of my toes off the ground. If I was sitting and not reaching up, I felt perfectly fine.

By the time I went to the doctor for the EMG, the only way I can explain was that I felt like I was slowly getting paralized.

I had my first symptoms of muscle pain in my arms for a few days and had bouts of double vision. I had been out of town for 5 days, from a Wed. to Sun. During this time, everything started going and getting worse as the days progressed.

I did get medical attention quickly, and that was a blessing.

The Monday I came back I saw my first neuro, who was an idiot. He doesn’t even do his own testing and just wasted my time. Then that afternoon, I went to another neruo who did the EMG/NCV. She was rushing, because it was late and she wanted to go home. Her attiude changed when she started getting the results. However, while I was on the table having the EMG, she tells me that I have GBS and when i inquired what that was, she responded that I was going to be a parapalegic. She would speak to my neuro. I took the results with me and went home to read about GBS.

When I read the prognosis, the next morning I called my friend, who is a lawyer and asked to write up a living will and power of attorney, so my husband and daughter can speak on my behalf and control the upcoming situation. Upon speaking to her, she reminded me of a neuro that I had worked for 20 years earlier. I also currently worked with someone who was a personal friend of hers. I am happy to say, I was in her office that afternoon. I got there at 2:00 and didn’t leave until 8:00. She did not want to believe the results from the neuro from the evening before, because my symptoms didn’t fit as a typical case. By the time I left her office, she too dx GBS, called the hospital that i would be in the next moring for a spinal tap and to start day 1 of IVIG.

The Spinal tap showed there was protein in the fluid and I was admitted into the hospital for the next 5 days for IVIG treatment. On the second day, I was able to lift my arms over my head. This reaction is also not typical. most people do not respond as quickly. I left the hopital 12/22/09 feeling great, like it never happened. By 1/26/10 i was put backin the hospital bc I had such double vision and my weakness was coming back. After the 5 days again everything was good. 3 weeks later I went in for the day to have 1 dose of IVIG. less than 3 weeks later, I had to go back in b/c I was getting the weakness again. My eyes were perfect. I don’t really fit into any specific category yet. They did blood work to see if the antigen that is usually present in patients with Miller Fisher (forgot the name, IQ1B). well that was negative. She called me last night and wants me to wait 3 weeks before the next treatment and see what happens. she is not convenienced it is CIDP.

She said w/CIDP. you don’t have the problem with the eyes. So my symptoms are poiting to two different varients. At this time, i am waiting another week to see if symptoms come back, or hope that maybe this was just GBS and we caught it early and I am on the raod to recovery. only time will tell at this time.

I hope you get answers that you are looking for. I find this site to be helpful, because it makes you more informed and are etter able to ask proper questions and hopefully get answers and the right treatment for you. My doctor also told me to take Vitamines “B”, “C”. I alternate every other day with these and take a multi vit every day. i also take a baby asprine (something to do with the IVIG).

If you need a spinal tap, it did not hurt me. I did get a headache and the only way to feel better was that I laid down. But don’t forget, I not only had the spinal tap, but I had my first course of IVIG, which is known to give headaches as well. one way to help with headaches and IVIG, is to have the IViG drip slowly. When I got the five days they had it drip for 6 hours each day. When I go for these monthly infusions, they give me a little more in the bag, and she had it drip for 8 hours. I had no adverse reactions to this so far. The slower it drips the better for you.

don’t hesitate to contact me.

Laura

I was lucky enought that I had seen these two doctors on the same day

Jessica,
I had the vaccine (injectable, Sanofi Pasteur) on October 29th and since then I have progressed to almost the exact point as you. I wound up in the hospital for 5 days with my digestive system completely shut down and had all the tingling etc…Now, it is all muscular with fatigue and perceived weakness, since I get tired even chewing a cracker or brushing my teeth. My neurologists (3) have given me the same frustration you are feeling with an inability to really figure out what is going on. All my tests have come back negative, which happens about 60% of the time despite positive disease. They are hesitant to use IV IgG and steroids etc…because often those treatments are very harsh and even as dangerous as the disease itself, so they use it conservatively when someone is really bad. Additionally, it often does nothing if treatment comes long after the onset of symptoms. I am wondering what vaccine you got, if you feel like sharing, and did you report the adverse event to the CDC [url]http://vaers.hhs.gov/index[/url] ? Also, how are doing these days? Are you feeling any relief from the symptoms? I really hope you are and you are in my thoughts. I totally empathize.
All my best.
Chris Fraker (Hollywood, FL)

I guess I would want to try to figure out if it is gbs or possibly cidp. Because you guys have had a normal ncv/emg and in your case a spinal, maybe the nerve biopsy could be helpful in determining if there is onion bulbing evident. If there was not then gbs or a variant there of from the vaccine would be the logical explanation with no treatment as you indicated. But if onion bulbing was apparent you could deduce that it was cidp, the onion bulbing indicating continual demylienations. Then treatment would be warranted. Some people do have normal ncv/emg and l/p’s. About the dangers of treatment. I would agree that you cannot give treatment for gbs so far after and I would agree that it would not be responsible to administer ivig or pred. without knowing for sure gbs or cidp. But should it be cidp, you do have to do something and the ivig is not dangerous provided it is infused properly and the proper blood work is done prior to infussion to see if you are allergic. I am so sorry you and Jessica are in this diagnostic limbo. I hope you guys get relief/answers soon. Keep us posted.

I think the docs that say you are the first ARE FULL OF CRAP now we have two! No]t to mention people who have not made the connection yet.

Jessica….I too had really bad digestive issues. I am also a Type 1 diabetic, so it became a hard time for me. I had two bouts of sever constipation > 2weeks…on the second bout, I wound up in the ER and the gave me a laxative that caused heart problems. Lucky for me, because when they did a scan of my gut, finally after I insisted, they found pancolitis that was a clostridium difficile infection. the docs thought I got it, since it is normally combatted by healthy gut flora, because I had been wiping out my flora with milk of magnesia and had suffered prior constipation with problems. I too, still have residual stomach problems and have found that beans have helped keep me clear (funny) and I occasionally take protonix and dulcolax, if absolutely needed. For me, it was a feeling of being so full, that even a glass of water made feel like I would explode. The antibiotic they gave me also has side effects of causing peripheral neuropathy, so it has been a mystery. I was getting a little better, I thought, a few weeks ago, but then, I got a bad cold, and everything flared up quite a bit. the pain I feel in my upper back and shoulders is ridiculous and the fatigue from doing things like chewing a cookie in my face or brushing my teeth in my arms, is discouraging. My kids think I am a little crazy 🙂 because I do these funny tests like jumping to touch the ceiling or pushups or lifting my legs in the air. My strength seems to be OK, although my legs tremble whenever I lift them from a sitting position. I also have fasiculations (twitches) and the numbness during sleep wakes me also. The anxiety is a bummer and I haven’t been taking anything because most of the meds mask some of the symptoms, but I know the stress only amplifies them. This has been an experience, as the doctors have been dismissive and less than helpful, mostly because, in my experience, most docs don’t want to think they can’t figure something out. (I am a PhD medical researcher and work with many physicians). I know of several other cases, including my friend’s wife, who has been twitching since the vaccine.
I really hope you keep feeling better and don’t be a stranger. Let’s be there for support, because it helps me knowing there is someone out there, also. I have been appreciating every day with my wife and kids, also, and this has certainly taught me not to take things for granted.
All my best,
Chris

Dawn,
What exactly happened to your child? I am always completely bummed to hear of a kid that suffers. It must be the parent in me. Jessica, I forgot to mention that the only doctor that said anything otherwise to me was the ER doc the night I was admitted to the hospital. He said he had been seeing an inordinate number of patients with constipation and GI problems post H1N1 vaccine.

Jessica,
I also lost 25 pounds, which was not the way I wanted to do it. I subsisted on Gatorade, primarily and little else. I could not stand to eat any solid food, because if I did, I would feel completely, painfully full and would have to use milk of magnesia to relieve it. Even then, the relief was minimal. I am quite sure my motility is slower. I have seen a GI, but he has been treating the bacteria more than paying attention to the motility, and he has no experience in seeing nerve problems in the GI from vaccines. I think that is the hardest part, trying to convince doctors that try to lump their experience with what you are feeling, when this vaccine is a completely new entity and they can’t possibly know what will happen. My first neuro also told me it was a mild sensory GBS and then when I had the constipation he was like “that doesn’t happen with GBS, that can’t be it.” Then, I also had urinary problems and facial tics and he kept saying “that’s not like GBS, it must be something else” When i finally responded by saying, “Yes, we know you don’t think it’s GBS, how about finding out what it is?”, he stopped answering my phone calls.
It really struck me what you said about the mornings. As I go to bed at night, i get these severe anxiety issues that I can’t explain and then when I wake up, my symptoms also are the worst of the day. I start to feel better late morning to early afternoon. I have found that anti-inflammatory meds like Alleve help some with the symptoms. This makes me feel better, because chronic neuropathies usually do not respond to anti-inflammatory treatments.
I will try some anti anxiety meds which he prescribed for me (Klonapin). I was hesitant to take them originally because one of the side effects is, guess what, CONSTIPATION, so as I thought that the GI stuff was by far the worst part also, I wanted to stay away from that. Maybe a small amount, though. I will let you know if I learn anything more about mine from my docs, as most of my bloodwork so far has been negative (ANA, Rheumatoid, Lyme’s disease, etc…). Hang in there and keep being tough and I hope that eventually all this will be a bad memory for us. I, too, will shy away from every vaccine from here on out.
All my best,
Chris

OK you guys, I am going to have to search you guys out and bonk you over the head with a comprehensive stool sample box to check for candida/leaky gut!!! It is so simple, just ask for it. You guys both speak of allergies (cause neurotoxins which leak out of the gut which cause …neuro symptoms!! Get the Elisa test so you can eliminate the allergens that increase inflamatory process in gut and everywhere with their neuro toxin release. Trust me I am NOT sold on this naturopath stuff, there are no side affects listed on the bottles, no contraindications on the bottles, it is scary, but at least the tests can point us in the right direction.

Chris, not that I am glad you were recently sick and felt worse symptom wise, but I have been out of my mind worrying about a relapse for us, only to find out strep, some other virus and my sons good friend who has been w/us every day was sick and now you too confirm that feeling sick made you worse. The funny thing is, we have been at this cidp crap for 3.5 years and each time we are sick with a cold/virus, something different happens. this is the first time there was more than pain tiredness and zaps. This was the first time the heavy legs reemerged. They since seem to have gotten better as he was on the trampoline yesterday and is going to have an airsoft war tomorrow after treatments w/his friends.

You asked what our history is, cidp about 3.5 years ago took about 4-5 weeks for dx, first dx was a psych dx, second charcot marie tooth, third gbs, fourth cidp all of this happened in the 4-5 week period, a time in our life we will probably never forget. Currently we are weaning down from 140grams of ivig monthly (split into 2 week intervals) to starting tomorrow, 30grams per month. So 15 every 2 weeks. We will be off by June if everything holds. Appointment is on Fri. Good Friday,I am praying Jesus will hear me and all of Kevs reflexes will be intact as they were in Dec. If not, I am sure a ncv/emg will follow in the coming days to compare to our last one in June which was near normal. If there is any variance, loading doses will be in order and we start from the begining to find a permanent threshold. I suspect that number will be 70. That is where we held for a long time. I am praying he has been feeling the way he has as of late because of virus as you mentioned. Good luck and keep us posted!

Jessica,
What tests did they do besides the MRI? Did they try a nerve biopsy or antibodies against nerves or cells etc… (ANA, anti-ganlioside, anti heparan sulfate). Did they completely rule out CIDP, or just never test for it?

Dawn,
How did they diagnose your son’s CIDP? Did he have slow symptoms, like us, or was he much more severe with paralysis, etc….Just curious. I know a lot of cases present differently. I don’t think we have candidiasis, as it typically occurs in immune-suppressed people and not often in healthy adults, although at this point I’m not ruling anything out. The simple fact is that it would be weird for it to occur 2 days after the vaccination just out of the blue. I will look into it though.
Thanks for all the support, guys:)
All my best to both of you!
Chris

Jessica,
I had head and cervical MRI to rule out MS. Two blood tests for autoimmune markers (some not all). I had one NCV in january that was negative. The disturbing thing that I discovered was that in 50-60% of CIDP cases, all these test can be negative. The one tell all test, which also can be negative on occasion, is the biopsy. It really depends on the degree of demyelination. Often, neurologists rely on a differential diagnosis of putting the person on IvIgG or steroids and if they get better, well then they have CIDP. Pretty lame diagnostic tests, if you ask me.
In doing some research, I discovered a paper that really caught my attention. Apparently, early trials with a drug that is an analog of an intermediate form of tryptophan, which is used by the body to make both serotonin and melanin, had remarkable results in curing vaccine induced GBS and experimental autoimmune neuritis. Unfortunately, there were some adverse effects in a small sub population of people with MS, so it was stopped, but I know of other compounds that are similar and I wonder if they might be something that might have some benefit to us. I know Resveratrol, the antioxidant in the news so much from the skins of wine grapes, is a potent anti-inflammatory. The issue is that many of these supplements are at doses far below the therapeutic dose. My cousin works with the Professor from Harvard who discovered the compound and he says that they have seen some amazing effects in neuropathy. I might try to find some of these compounds and give them a try. It makes sense to me, because an inflammation can be the result of the insult of the vaccine or underlying nerve inflammations and then when our antibodies against the vaccine (IgGs) begin attacking that same inflammation, it never subsides. It may not be damage to the myelin sheath, it may simply be inflammation that has never been given a chance to subside. If it goes away, so to might the IgG responses to it. We can only hope. OK that is my lame lecture on immunology for the day. I hope that you continue to feel good and lets keep exchanging ideas and updates so we can figure out what is going on with us.

Linomide suppresses experimental autoimmune neuritis in Lewis rats by inhibiting myelin antigen-reactive T and B cell responses

[url]http://www3.interscience.wiley.com/journal/119058339/abstract?CRETRY=1&SRETRY=0[/url]

Take care,
Chris

Jessica…I will definitely keep you posted. I feel the same way. We need to figure this out. I have three girls, two 13 and one 5, so as much as I try to keep it from them, it affects everyone’s life when I can’t go do as much as I would like. My gauge has been working out at the gym and seeing how fatigued I am or how weak. I haven’t lost any strength, in fact I can lift more than when I started, but as of late, I get more fatigued faster and have to take longer breaks between working out. That is what scares me. I had the dizziness early on, and neuropathy does affect proprioception and balance. I tried some meds and the one that worked the best was a simple antihystamine like non-drowsy benadryl, but that also slows down nerves and can cause digestive issues. It was constant during the hours I was awake, now it comes and goes much less frequently. I am going to see my neuro again on Monday and I am going to push him hard to theorize about what is going on and I will plug him for information about inflammation vs. demyelination. Whatever I learn, I will pass on. Hang tough and keep chatting. It helps me and I hope it helps you. At least we have this to realize that we are not going crazy and it is real.
All my best,
Chris

Jessica,
I had one more question for you. You said that you got so weak that you couldn’t hold up your hairdryer. Was it weakness or that your muscles would get really fatigued? Mine is that I can’t do things for very long without my muscles aching. This includes chewing and I have had some “difficulty” swallowing. More the sensation of my throat and jaw muscles being tired, I would guess. How are you feeling the last few days? I have had a rough few, but I am hoping you are feeling better and are on the way back to normal.
Cheers,
Chris

Jessica….I am sorry the last days have been rough. I, too, rely heavily on my wife and kids for their support and don’t know how I would do without them around. I saw my neuro today and he explained a lot, because I finally had some good questions to ask him. He said that reactions to vaccines are typically demylinating, but that the level of my and, I assume your, reaction is basically sub-clinical. He has seen cases like this before and true CIDP is usually much worse where one has pronounced weakness and abnormal NCVs. I explained the fatigue and he said clinical fatigue would mean I wouldn’t even be able to life the cell phone or work out, not just get tired from it. He said that insults to the nerves occur in all degrees and in most of the cases that he has seen like ours, it eventually resolves or has minor set-backs. He said this doesn’t completely rule out that it could progress or turn into the chronic relapsing/remitting disease, but he doesn’t think it will be that as this level doesn’t usually turn out that way. So, maybe some good news. He also said he would be very remiss to give things like IV IgG or steroids or other immunosuppresive drugs to a patient at my level, as the side effects of the drugs are often much worse than what the current symptoms seem to be. This made me feel better, but still doesn’t completely get rid of all I am feeling. I guess it will just take time and he said that often it can be months and years before things get back after a neural insult.
Take care and I hope those headaches subside.
All my best,
Chris

Jessica,
That is so right. I do the same thing comparing to the early days and it is better in some ways but worse in others, because I never had any muscular involvement until recently. I think everyone now-a-days is impatient and I am, definitely. We are somewhat accustomed to getting over illnesses with a pill or a few days of rest and have to take stock when it is something that takes longer. This experience has taught me that also. It is true that the uncertainty is unnerving, but I think we will mend. Interestingly, the doc also told me that the often in GBS, an NCV test will initially appear normal when a patient is completely paralyzed and then later when recovery begins, will appear abnormal. In the same way, he said that the nerves can often cause pain, fatigue, weakness and other symptoms when they are on the mend from an initial “insult”. You’re right that is a funny term. So, what we might be feeling is our body mending and causing new sensations as things heal up. That is what I am going to try to focus on day to day.
Hang in there and talk whenever you need it. I hope with time that our issues will get better.
Take care,
chris

Jessica…..I am certain that it caused some gastroparesis, also. When I ended up with the concurrent bacterial infection, the docs attributed all the gastric problems to that, but I have had some minor problems since, and I know it is still nerve related. The neuros kept saying “it can’t be the vaccine or GBS, it doesn’t usually present that way”, but I reminded them that this is a new vaccine and that the doctor in my ER said that he had seen an inordinate amount of patients with constipation, bad constipation, following this vaccine. Clearly, the doctors don’t really know when something is new and they should spend more time listening to the patients to help the next one in line instead of disregarding the symptoms. I found that eating a lot of fiber (lots of cooked beans, kidney, black, chili) has helped more than anything and taking probiotics like keifer and Culturelle (a supplement) has kept my stomach with minimal problems (knock on my head, or wood). I saw a GI and he also didn’t really put two and two together and assumed everything was bacterial. It has been 4 months now and it still isn’t completely better and he is starting to put a little more stock in the nerve issue. He gave me Protonix, which is for acid reflux, usually, but works well to soften and stimulate food movement. Also, my neuro gave me Bethanechol which is a little milder than Reglan, but works more on the intestines. So far so good. Thanks for the info and for helping me out. I think as time goes, so will the problems. That is what I hold onto. In the mornings, it is tough because I always feel lousy, but hopefully that will change soon. I also wake up several times a night with tingling hands, drives me nuts.
Take care and keep on healing.
Chris

Jessica, 2 aleve at night helps with inflamation issues. cfraker mentions probiotics, I am telling you this naturopath could help. For instance the stool sample can measure how quickly you bm it can tell if it is a sluggish bowel as opposed to gastroparesis. My father in law had constip problems from the neurotnin and vicodin.

Jessica…I have been taking ibuprofen and sometimes Alleve and they help a little, but my Doc said that if you are noticing a real effect when taking them, then it might be a good sign because typically true demyelination will not respond to over the counter anti-inflammatory meds. I also was given gabapentin, which I tried a couple of times, but that makes you feel sluggish and will affect negatively the digestive issues as it is a neuro-suppressive agent. That is what I hate about the meds. It seems like I take one to speed up my nerves for the digestive issues, which has the side effect of causing more tingling etc…and then the ones I take for the tingling slows down the digestion. That is why I basically stopped all of them. Sometimes I feel the docs don’t think before prescribing. Why give two meds that cancel out the effects of eachother? 🙂 I am hoping that time will take it away. Thanks for the tips, though, and the talk. Incidentally, a friend of my Mother’s had the virus, not the shot, and he has had almost identical symptoms to the two of us. So, it appears to be related in my eyes, to the viral matter and not so much other ingedients of the vaccine. We are just a few of the lucky few that have reactions to that material. 🙂
Take care,
Chris

ringworm? contact dermatitis? Psoriasis? Something else that comes to mind is sclerodoma, spelling is wrong I am sure. Kevin had rashes in the begining, only to find out it was from the ivig, but I researched sclerodoma and I think I specifically remember red roundish, oval patches that were red and itched. I think there were two kinds, systemic and localized. Try looking it up, it has been about 3 years since I looked it up. Could it be fungal, another of our rashes that I thought might be a lupus rash turned out to be fungal which led me to my systemic fungal search. (Leaky gut and candida) good luck.

Jessica…I am sorry for the rash but I am glad to hear that some things are resolving. It is the same for me. My stomach is a problem again, but other things (fatigue) seem to be improving, but as it comes and goes, it could just be a good period. To me, the rash sounds potentially like shingles. The hypersensitivity and the pain are what make me think that. Also, shingles is something that often occurs in conjunction with autoimmune disorders. It, like a lot of disorders, can occur in a wide spectrum of presentation (severe, less severe), but the rash is a hallmark sign. Is your rash everywhere or more “band-like” in specific areas or on one side of your body. These are some of the characteristics. Also, shingles often will turn into blister like spots. I hope it resolves and it sounds like the Benadryl might be helping. How is your fatigue? Any better?
All my best,
Chris

caladryl lotion helps with the itching (we used it for chicke pocks 0

Jessica…glad to hear some things are better…Mine is a trail of ups and downs, also. I feel like the fatigue is getting better, but then I went to work out yesterday (nothing like I used to) and I was shaking and weak after. The worst is my stomach which always feels full, so I eat less and am losing weight again and I think this adds to the weakness. I think my fullness is the same symptom as your nausea, we just are expressing nerve problems in that area differently. It comes and goes. I am 6 months out now and I keep hoping, like you, that the docs will find some magic fix it or it will just go away. Just keep hanging on, that’s all we can do. I just turned 40 on Saturday and I was laughing when I was telling my friends I feel like I am 60, like my grandparents when they would talk about all their ailments. “Oh, my legs ache and my stomach is acting up again blah blah” It has some humor, for sure.
Take care,
Chris

Lake Michigan is beautiful. I have family in Leland (lower peninsula) and we go on the lake frequently during the summer. You will get there and you will be fine when you do. I can feel it. I agree it is discouraging and I would love that info for the vaccine injury hotline because I don’t really feel like all these co-pays and bills should be my responsibility when the pharma company that made my vaccine reported record profits from it the quarter after it was used. Unfortunately, those big companies have iron-clad protection against events like this and I think it wouldn’t be worth the stress and the effect it might have on our bodies. It would really be nice, though, to get a concrete diagnosis or some idea as to when it will go away, if at all. Thanks for the birthday well-wishes and I will be cheering for your trip on the boat. Hang in there and keep playing with the kids to take your mind off of our troubles…that is what I do.
All my best,
Chris

Hi Jessica,
Happy birthday to your son. When is the tonsilectomy/adnoidectomy? Is this the same son? Besides the co-pays, there also is the notion of life time benefit. I do not know what yours is currently, but they do roll them over. For instance, if you are with BCBS now and switch to say Guardian and then go back to BCBS, they resume the tally from where you left off. If you happen to have no lifetime max now, you could at a later date. Obama says he is going to obolish that practice, I will believe it when I see it, not holding my breath. Anyway, maybe that could play into your compensation. Have a great birthday weekend.

Jessica,
Hope this post finds you feeling better. I had my NCV yesterday and the gist of it was that there was no evidence of any severe demylination. The doctor was incredibly thorough and knowledgeable and he assured me that this should all pass in time as the F-wave test, which shows conduction to and from the nerve roots along the spine, was really quite normal. I am still having some issues and definitely have gatroparesis as a result of this (loss of autonomic nerve function) but this is probably due to the fact that I am 24 years diabetic and it exacerbated underlying neuropathies that might have taken years more to really show themselves. The real reason I am writing is that if you remember about a month ago I was telling you I was going to try Resveratrol on the recommendation of several immunologists. I ordered a supplement (which was recommended by the scientist who discovered resveratrol, no company affiliation, and with whom my cousin works at Harvard) and although it might be anecdotal and coincide with healing that is already going on, I have seen a marked difference in how I feel after about 4 weeks of taking it. I don’t tingle at all any more, my strength is returning, the fatigue is diminshing (although all of this comes and goes in waves) and I feel generally better. If you are interested in trying it, the product is called Longevinex
[url]http://www.longevinex.com/[/url]
I didn’t want to tell you to try it until I had taken it for some time to test it. It is fairly expensive (120.00 for a 4 month supply, 1 capsule a day, so about a dollar a capsule), but it has done the most for how I feel. It is a much more potent anti-inflammatory than naproxen or ibuprofen etc… and I didn’t see any lasting effect with those, just temporary. Remember it falls under the category of nutriceuticals, so it is not FDA regulated, but I researched this one fairly heavily and I have several friends who take it as a regular supplement and have done so much longer than me with no adverse side effects. It is simply a compound found in grape skins (the whole French red wine paradox comes from this). I hope you are feeling better and you are in my thoughts. Let me know if you decide to give this a try and we can compare notes. 🙂
Take care,
Chris

Your story rips my heart. My heart & prayers go out to U. So sorry your Drs. seem uncaring, unconcerned. I feel that U should be disabled, because the stress of a job is too much. Need a Dr. to disable U. I too was referred around like a hockey puck, morbid depression. I see a shrink, very helpful, U should do likewise if ins. pays for it.
I agree if a Dr. had it, then sympathy, empathy & more agressive treatment!
Remember HOPE is eternal!
Gentle hugs, smitty

Jessica….you do not need a prescription. Just order online and it will come within 3 days. I am still feeling pains and twitiches etc….and I agree with you that just continuing to work and carry on keeps me sane, I also get bummed out staying at home where I am hyperaware of every small tingle etc…..I was encouraged by what the doctor said mostly because he was confident that it wouldn’t get worse, only that it might waffle for some time. He said it can take quite a while for inflammations like that to resolve and that with demyelinations, which he feels we both probably had (he was not a big fan of vaccines) it takes some time for the nerves to remyelinate. He said that the typical pattern is that strength returns first, then with a sudden burst, the fatigue will just change one day. That is the pattern he has seen for years in similar insults to the system. I think I find it hard to be patient, but at this point, 6 months later, I have learned patience. As for the stomach issues, it sounds to me like you might have some gastroparesis, also. Nausea is one of the symptoms and burning abdominal pains etc…Today I learned from my endocrinologist that they are using a medicine off-label to treat gastorparesis (which is usually injury to the vagus nerve) with miraculous results. My doctor described a patient that had intractable gastroparesis due to diabetic neuropathy, who was hospitalized for 6 months unable to take anything by mouth with horrible nausea and having to be tube fed. The patient was given one pill daily and within a few days, the gastroparesis had resolved. The patient is now mobile again off of tube feeding and better. This has been the case with 8/8 patients that they have tried this on at our center in Miami. I am going for a gastric emptying study on may 17th qand until then, I am going to stay on my current medication (Bethanechol). After that date, I am going to go on the other med (Lyrica) and then go back for another test to help my docs in their study. They said they might include me as a coauthor and the paper, also, which doesn’t hurt my academic career. Talk to your doc about getting Lyrica. It is typically used for diabetic neuropathy off-label and as an antidepressant, but it has many other uses that are currently under investigation. If you have any trouble, I can put you in touch with my docs and they could explain it to yours. I am confident it will really help.
Keep moving forward and I feel we will get over this.
All my best, my vaccine buddy 🙂
Chris

jessica…sorry, I should have clarified. I go to an endocrinologist because I am a Type 1 insulin dependent diabetic. Gastroparesis is a common side effect of diabetes as are all peripheral neuropathies (thus the idea of my underlying conditions being affected by the vaccine). She referred me to the gastro and she is also doing the study in conjunction with other endos on the Lyrica…..as they commonly see lots of gastroparesis and send the patients to gastroenterologists for treatment. I have only been to the gastro and the neuro for my vaccine issues. I went to a general practitioner to rule out things like rheumatoid and other conditions (like neurosyphilis, HIV, myasthenia gravis etc…all conditions with neuro possibilities, but I wasn’t expecting any of those to appear). I don’t think you need to see an endo, but one of the conditions that can cause neuro issues is realted to the thyroid so it might not hurt to have your general doctor screen thyroid hormones etc….and vitamins, as well, like vitamin D, serum potassium, calcium and magnesium. Maybe some of your fatigue etc….is related to the eating problems and might be nutrition related.
Keep on fighting it, I know we will beat it in the end.
Cheers and have a great week-end.
Chris

Jessica,
Sorry I didn’t get to wish you a happy Mother’s Day. Hope it was great. I was just writing to say “hey” and check in and see how you are doing. Let me know how goes the battle. 🙂
Take Care,
Chris