I need help-once again. I was diagnosed with demylinating and small fiber neuropathy late last year.
I basically have terrible nerve pain in my underrarms,down my arms and in my legs. I have numbness in my toes.
I was examined in Jan.by a reputable neurologist at the recommendation of my ex-LLMD and told to have 15 Intraveneous gammoglobulin treatments(IVIG) .
I have already had 5 in feb and 5 in March.
My legs feel a little better at times but my arms actually seem worse. In general I feel worse-head fog,buzzing etc.
I am scheduled to start my last 5 ivs on Mon,tues,wed,etc. of next week.
The doctor gives me no advice and just keeps telling me it takes 15 treatments to feel better.
Dont you think there would be gradual improvement if it is going to help me??
Now I am afraid that it will make me worse.
I can handle one more week of course if it helps and if it was a waste of time but does anyone know if they can actually make you feel WORSE!!
My headaches, head buzzing fog HAS been worse since I started them but I can't attribute it to the treatments or the Lyme getting worse and not improving...
Any ADVICE OUT THERE???? I have to decide over the weekend.
Laurie
Posted by chamade (Member # 11472) on :
IVIG seems to hit or miss, even between people with same symptoms. I hope to start it this year, also have an excruciatingly painful neuropathy. You should definitely stay on the treatment, I did read on a CIDP board that it may take many treatments before noticing improvement. Is your insurance covering it?
Posted by laurie sm (Member # 14584) on :
O Yes- my insurance is covering it. It costs 10,000 for 1 treatment!
Do you use any medication for you nerve pain??
I have bee living on Percosets for the past month but limit myself to once a day.
I am afraid I will become addicted or they will just stop wroking.
I am thinking of trying Neurontin but have heard about bad side affects...
Laurie
Posted by ArtistDi (Member # 2297) on :
Are you taking antibiotics as well? I am on both, and feel the need for the antibiotics as well, along with aoun antiviral.
I have also found that with some treatments, symptoms do worsen initially, and I think this may be a die-off or the gamma going after the nerve damage.
As with all treatments, it is so difficult to know what is really going on.
One more thing--make sure you are not experiencing a serum sickness reaction. My own llmd had it when he was on those very high doses of gamma.
You may want to opt to take the doses once a week or spread them out a bit more to help with the side effects, etc. Do you take Benadryl or Tylenol before you infuse?
Artist
Posted by laurie sm (Member # 14584) on :
Artitdi-Yes I have been on zithromax since Nov. and just started Mepron a week ago.
So You think I should just finish the last 5 treatments and see what happens???
I thought they could only make me better but I don't want them to make me worse...
Laurie
Posted by laurie sm (Member # 14584) on :
Artist- Oh i take benadryl and tylenol before I infuse. What is a serum sickness reaction??
The visiting nurse says I have been tolerating the infusions well-whatever that means-I guess vital signs wise.
All I know is that my head issues have been worse since the infusions. I wake up every day with a headache.
I have burning,fog in my head.
But I don't know if this is just coincidental or the result of Lyme and/or co-infection.
The pain has not drastically improved-some moments of theday better than others.
Thanks for your advice
LAurie
Posted by Aniek (Member # 5374) on :
I don't know anything about IVIG, but I would assume that if your nerves are damaged, that as they repair you could have some increase discomfort. Is it possible that the head fog, buzzing, etc. is kind of like the itching you get when a scab is healing? I admit I'm making this up.
As for nerve pain, the opioid medications don't have great success with nerve pain. Neurontin and Lyrica both seem to help people with nerve pain, but not always when it is from Lyme. I would definitely try one and then the other if it didn't work.
Percocet is generally not addictive when taken properly. Physical dependency, which is the need to increase the dose, is something you can't do anything to stop. It's ok if you have to increase the dose eventually, it's how the medication works.
Taking it once a day and spending the rest of the day in intense pain won't prevent it from happening and could actually damage your nervous system so that you feel more pain.
Posted by laurie sm (Member # 14584) on :
Aniek-Thanks for your advice.
About the percoset-I only take it when the intense pain starts.
There are some parts of the day where I am not in pain or the pain is manageable.
Right now I have an intense headache but I won't take the percoset for that-only the nerve pains.
Laurie
Posted by Aniek (Member # 5374) on :
Laurie,
Your welcome. I have to support the other Long Islanders. I grew up (and got Lyme) on LI.
The top two publications at this link might be of help if the IVIG does not eliminate your pain.
Right now I have an intense headache but I won't take the percoset for that-only the nerve pains.
Laurie
Laurie, as someone with lyme + babesia WA-1, I can tell you that for ME, the only thing to even TOUCH those awful headaches was Relpax. It helps to open up blood flow to your brain. Pain meds really do NOT help at all. Ask your doc for a sample of that, or a sample of Imitrex. These are a different kind of med -- not a pain med. It might really help till you're past the bad head days. And I DO think that treating babesia is going to help get you past them!!!
Michelle
Posted by oxygenbabe (Member # 5831) on :
Drink a lot of water ahead of time and ask the doctor or nurse to give you a simple saline infusion first (say, 100 ml of isotonic saline) to hydrate. You may find less side effects.
DRIP VERY SLOW. DRIP AT A TRUE SNAIL'S PACE. They may want to drip you faster for convenience but get there as early as possible and make sure the drip goes REALLY slow, like a drip, and you wait a while, and then another drip. That's how I do.
Less may be more. Like ArtistDi I only do 5 grams every other week.
The antibiotics may be causing problems.
IVIG thickens your blood for up to 3-4 weeks after an infusion. If you already have fibrinogen in your blood or thick blood from chronic infection, IVIG could be making this worse and possibly causing headaches. If your doctor doesn't understand this, guess you have to research it a bit and work with your doctor about it.
That's one reason hydrating with IV fluid ahead of time may help.
Nerves take a long time to repair.
Posted by laurie sm (Member # 14584) on :
Thank you Michelle and oxygen Babe.
Michelle- I used to take IMITREX for my headaches and they worked great.
The neurologist doesn't want to give me anything else yet until I finshe the infusions.
I wake up every morning with one and then it usually subsides and the fog and nerve pain in my arms and legs take over!
Oxygen Babe-I do get the saline and drink tons of water. I told the neur. that i got headaches so he also gives me tamadol(something like that ) and benadryl.
It DOES drip very slowly.
So it sound like I should finish up with the last 5 treatments and hope for the best...
Thank you for everyone's advice.
LAurie
Posted by ArtistDi (Member # 2297) on :
Hi Laurie and Oxygen Babe,
If you look at side effects of gamma, headache is one of them. As Babe said, infusing slower is helpful and lots of fluid before, during and after.
I have talked to others on IVIG, and some are not taking the dose five days in a row. They take one dose per week (so four in a month). It helped with side effects.
Serum sickness is like having the flu (according to my llmd who had it), and there is testing to indicate if that is the problem. Everything aches, and everything is much, much worse symptom-wise.
Babe, long time no hear. I decided to slowly increase the gamma and am doing it in incremental doses. The valcyte (low dose pulsed) has made a huge difference in my gut issues. Over the past four months, I have been able to eat more foods and have gained needed weight.
I think the gamma has helped bring back some muscle mass and definitely helped with energy.
Still figuring it out, but also noticing the mcs is still getting better with all these concoctions. I keep going, with the usual dip in the road.
** Laurie, one more thing--I know that folks on gamma herx after they resume antibiotics. So there is a rush of symptoms as the body fights the infection. I also heard this from another llmd.
Di
Posted by oxygenbabe (Member # 5831) on :
Glad to hear from you Di and that you're doing better. Interesting that you 1) tolerate valycte and that 2) low dose helps. Makes you wonder what viruses are in some ticks.
I am getting worse MCS! but I think its from mold exposures in my place! It has been an awakening. I found out there was dry-rot in all these shelves flanking a radiator that had been installed decades ago. I got rid of the radiator and we took down the shelves and the wood was black and the wall area and sill area were black. Ever since then I can't go in that room and it smells musty. I get prickles all over. I realize that sleeping in that room I was always totally congested and had all kinds of other symptoms. My bathroom also turns out to have a more serious mold issue than I realized. And after a lot of research I found out mattresses are bad for people with any mold sensitivity. They almost all get mold--there are journal articles about it. There are various common fungi all over the place, and dust mites, and the feces of dust mites. They form an ecosystem with the fungi feeding on the feces of the mites. All you need then is a good medium (like the foam and cotton batting in mattresses), some warmth (human body) and moisture (human sweat and/or humidity in air) and you get a thriving ecosystem of fungi, mycotoxins, etc in your mattress. Not to mention your bedding but that can be washed.
I found that not sleeping on a bed improved many symptoms! But my MCS is worse probably because of these mold exposures creating a hyper inflammatory state. However my MCS seems very mercurial. I can go in some big stores and no problem, other stores, a real problem. I'm beginning to think its mostly formaldehyde from particle board and new construction that really bothers me.
Posted by laurie sm (Member # 14584) on :
ArtistDi-Thanks for the advice. I have actually never stopped the antibiotics while on the IVIG treatments so maybe that is why I feel so lousy.
I am going to speak to my neurologist tomorrow and see if I can infuse maybe 2 days a week instead of every day this week.
I only have 5 more left and if they don't help then I wil try neurontin or elavil,etc.
I cannot live on this PERCOSET!!!!!!
Laurie
Posted by ArtistDi (Member # 2297) on :
Laurie,
One more thing--the neuro that tested me in NYC, told me NO ANTIBIOTICS three days before and three days after infusion of IVIG. I bet it is the antibiotics making you herx too hard. The folks I heard of doing the NYC neuro's protocol of 5 days per 1 week a month are off antibiotics week before and week after infusions.
I don't know why patients are off--because of interactions or if neuro wants to see what the gamma is doing.
Babe--mold is sooo bad, and I think that is how my mcs was started when we uprooted those wall-to-wall carpets in my house. I can always smell mold. That is horrible about your apartment, and I hope that you can get someone to clean it up. Can you try Mupirocin ointment in your nose? It is generic bactroban ointment, which Dr. S in Maryland prescribes for mold patients. Make sure to irrigate your nasal passages with salt and water, then apply the ointment far up the nasal canal with a clean Q-tip. It may help you. I do that when I have a sinus infection coming on and it sometimes stymies it.
Best.
Artist
Posted by laurie sm (Member # 14584) on :
Artist-my NYC neuro. NEVER told me to stop the antibiotics. I absolutely HATE this dr.for many reasons...
Still waiting to hear back from him.
Laurie
Posted by Neil M Martin (Member # 2357) on :
Eleven times Drs. gave me IVIG 1997-1999: 1 GM per Kilo body weight. I had no adverse effects. IG helped temporarily/partially relieve my paresis. But IV antibiotics helped me more and were cheaper. The Drs. only offered IG when I was too weak to walk.
Once I began IV abx that never again occurred, and hence the HMO (which denied cld) quit the IVIG sessions. I was too strong, they said.
I would like to take IG again but my current HMO says NO. I can become too weak to walk if I quit antibiotics.... but is it worth it? My HMO neuro would run an EMG test. It would indicate nerve damage and he MIGHT send for IG.
But I respond to abx: is it rational to deny an infectious component or allow infection to advance unchecked?
Back to you: there have been posts about Lyme patients taking IVIG. Google IVIG + Lyme.
Just my 2 cents. I am not a Dr. Consult a Lyme literate physician. But it looks like IG might help you.
God bless.
And please, anyone, email me if you know who administers IG for LD. [email protected] Posted by achey (Member # 6284) on :
I take IVIG after 3 yr of IV and oral abx for lyme and coinfections left me with increasing neuro problems and muscle weakness, thus a dx of CIPD.
I infuse 40gm of octigam 4 times per month. I have found that infusing once per week is the best option for me.
I premed with tylenol and benedryl and IV colliodal silver and gold. I also find drink 2 quarts of gatorade along with other fluid, milk tea and water help to eliminate side effects.
I find if I try to cut back on my silver gold infusion of trade water for the gatorade, I do not fare as well.
I am continuing to recover, and rediscovering memory, cognition, movement, and quality of life.
I wish you well!
Posted by lymebytes (Member # 11830) on :
Hi, I feel for you, I have nueropathy and horrible pain. Nuerontin for many works very well, others like Lyrica.
Dr. Burrascano recommends for neruo problems 25mg (yes 25mg) per day of b12 methylcobalamin injections, it can be very healing to the nervous system, it takes time, but I have read miraculous stories about it and I believe it has helped me very much in the 2 years I have done it. Please read this link regarding: http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=64
If you aren't sure about continuing IVIG, I say follow your instincts. We come to forums looking for answers, but really I believe we have the answer inside and we are really looking for others to hopefully agree with what we already have in mind, a sort of confirmation.
You do what is right for you Laurie, not what is right for your LLMD or anyone else.