posted
Today my Dr. is testing me to see if He could get me on IVIG. I have been through five years of antibiotics... one year of that being I.V. Rocephin.
I don't think he knows what to do with me anymore and my symptoms are quite neurological. He wants to see if he could get me to do this therapy, but it looks scary.
Have people had side effects?
Does it help?
I don't currently have insurance, what kind would you get?
ANY INFO... is highly appreciated THANKS!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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poppy
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Member # 5355
posted
How do you plan to pay for this? Unless you are very wealthy, the fact that you have no insurance seems like a deal breaker to me.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Thanks for that link Steve... that helps a lot. Still sounds scary to me and I still wonder how helpful it is?
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
HI Foxy:
Our daughter was on it for 21 months, every 4 to 5 weeks. Helped with anxiety and auto immune issue but as far as Lyme and co infections she still struggles.
I wouldn't rule it out but the headache and fatigue this caused was not pleasant.
Tim
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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posted
Thanks a lot Tim! My issues are largely anxiety and autoimmune. So the headache and fatigue were permanent or only while she was going through this?
would she do it again, or does she wish she wouldn't have done it?
I would got through a lot to relieve my head symptoms...
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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Pocono Lyme
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Member # 5939
posted
IVIG took care of my peripheral neuropathy. I could always tell when I was in need of another infusion about a week prior as I would be "washed out".
After each infusion, I'd feel dizzy for about an hour and tired out for about three days. I really didn't feel any other improvements.
My total IgG was very low as well as subclasses 1 through 4. It took nearly four years to hit low normal total IgG.
I switched to subQ at home weekly and have done much better. No more wash out period, more energy. Treating adrenal fatigue and thyroid also helped tremendously with fatigue.
It's also cheaper. I've had many head symptoms. Still working on them. I don't know what yours are.
One I had was "spaciness". That cleared with thyroid med. despite "normal" labs. One I still deal with is pressure. I'm currently on IV ABX as FINALLY an ENT (my sixth or seventh) did cultures of my sinuses and found 3 different opportunistic organisms. Two bacterial and one fungal.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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susank
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posted
Foxy - you don't have insurance?
Can't you get "Obamacare"?
IVIG (Gamma replacement) is very expensive. One gram is about $150. Doses generally start around 20 grams/month. Some people need more than that. Much more. Without insurance - they cannot afford it.
The supplies and nursing can be expensive also.
If you could afford the medicine - there is a much more affordable way to administer the drug. I do it SubQ - by myself - at home - no pump - just a butterfly needle and a syringe.
Doing it myself - and using minimal supplies - much more affordable.
The "push" method costs about $50/month in supplies - if that.
As opposed to the usual SubQ supplies - which is pump/rental - large syringes - lots and lots of tubing.
Of course IVIG (IV with a nurse - at home - or a clinic) is much more expensive.
FWIW if you have an Immune Deficiency (do you?) and you have insurance (other than Medicare)and they deny coverage - Gamunex/Grifols has (at least they did in the past) a program where they supply the meds/supplies at no charge. With a doctor's Rx of course.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
Thanks A lot Susank! So do you feel this has helped you a lot? I just can't decide if the benefits outweigh the risks and costs!
I am sure I could get "ObamaCare," If they take on sickies like me! No I don't have insurance. I was young and healthy and paid my bills fine by working hard etc.
I am getting more and more the feeling like SubQ must be the way to go. Sounds cheaper and less scary... but is it as effective as I.V.???
I don't think I have thyroid issues, as I don't really struggle with fatigue much. Sleepiness and weird, weird head YES!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
Thanks Lymetoo, I think my dr. didn't think I had that because, I have no itching, or rashes or allergies of any kind? I assume that is what histamine intolerance is? I will check into it though!
SusanK, I assume, since you are starting hyperbarics and from your tone that subQ wasn't your "ace in the hole?"
How long did you do this and your "side effects" weren't permanent were they?
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susank
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posted
I do Gamma replacement because I have an immune deficiency - CVID. That's what it's for.
Gamma - IVIG - SCIG - whatever - helps some other illnesses as well - as off label.
Yeah - one can get headaches and other side effects from Gamma.
SubQ much less so. Don't think anything permanent.
I will be trying mHBOT to help with my immune deficiency and every other problem I have due to Lyme and Co's.
I have been on Gamma for about five years.
If you can get it - I say try it.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
wow, it sounds like people are on this for a looong time? This sounds frustrating to me. Don't people get BETTER on this stuff? Or do you all regress if you stop it?
Thanks SusanK for dropping back in on this thread. Looks like you and I are on the same trail, as I am doing mild hyperbaric too! Posts: 477 | From Pennsylvania | Registered: Nov 2015
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cottonbrain
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posted
Just clarifying for people who are unfamiliar with immunoglobulin treatment -- immunoglobulin does not train our immune systems to behave properly -- it simply adds immune globulin from presumably healthy people.
So once you start it, hopefully you can have access to it for as long as you feel it is benefitting you.
I've only done a handful of infusions, and the side effects diminish each time -- still having lots of headache pain though --
if you do not have a Primary Immune Deficiency, you may not be helped by immunoglobulin -- probably not worth the associated risks unless you have PID, in my opinion.
Posts: 1173 | From USA | Registered: Nov 2007
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posted
Thanks Cottonbrain and everyone who chimed in here.
Since talking to some others, it sound like subQ has less side effects...and is the way to go.
Cottonbrain, could you even get insurance to cover this without an immune deficiency and doesn't everyone with Lyme have an "immune deficiency?"
For now, I am continuing the mild hyperbaric and going to look into adrenal/ thyroid...before coming back to this.
But, if I am stuck inside a head like this the rest of my life I am willing to risk the IVIG.
Enough people have told me it has helped their autoimmune type symptoms and that has been my primary problem, and antibiotics and herbs/supplements don't help. I have been through it all!!! Posts: 477 | From Pennsylvania | Registered: Nov 2015
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dbpei
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posted
foxyloxy have you been able to get IVIG started? I was very surprised to get a call recently that IVIG was approved. I started it on Friday.
A nurse came to my home and infused IVIG plasma through my picc line for about 7 hours. I felt okay during the day, other than increase in tinnitus and brain fog. But that night I felt horrible, like I had the flu, but I was doing okay the next morning.
After 2 more days, I am still feeling a bit under the weather (chills, tired, achy...) but no fever and head ache is not severe. I hope this is normal.
My IGG and IGM levels are lower than they should be, but I don't think I have a primary immune deficiency disease. I need to study up on all of this. I don't know the difference between that and CVID.
My insurance co. won't cover IV ABX but they will cover this! I have a copay that won't be cheap but I am perplexed by all of this.
My doctor thinks IVIG will likely help my cranial neuropathy. After reading some of the threads on IVIG, I am kind of nervous about whether it is the right choice for me.
I have profound hearing loss in one ear with vestibular damage and my worst symptoms are cranial neuropathy with all kinds of odd sensations and buzzing in my head. I have facial pain as well. I don't feel like I get sicker than most with viruses.
To those of you who know more about this, can having a chronic illness like Lyme disease cause your IGG and IGM levels to become abnormal? Or is it only autoimmune illnesses that cause this? I think Lyme can cause autoimmune illness, so this is probably not a great way of wording my questions...
Posts: 2386 | From New England | Registered: Aug 2011
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posted
I SO hope it works for you!!!! Your lucky your insurance will cover it and you can try it!!
I wish so much I could, But I guess my IGG and IGM levels were not QUITE low enough. Its a bummer because they ARE low... just not enough.
So I have been going at the Babesia infection for all I'm worth... It may be helping a bit, but I am not sure!
It's about time you get help for your awful head problems dbpei!!! You've been on lymenet way too long! Posts: 477 | From Pennsylvania | Registered: Nov 2015
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dbpei
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posted
Thank you so much foxyloxy! I know - I feel so fortunate that my insurance is covering this. I never thought they would.
I just pray it will help. From what I remember reading, it takes a few infusions before you start to notice results. And sometimes when you stop the cycle of infusions, you feel worse .
Funny, I didn't think anybody noticed how long I've been here. Always in the background - in life and Lymenet. Thanks for your kind words. And I hope your intense babesia treatment works its magic for you!
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Oh I remember you all right! You have head problems and I feel SOOO sorry for people with head problems. It's so awful! (no wonder you are always in the background)
For your encouragement, my Dr. calls IVIG his "ace in the hole." He seems to think it really works!
Make sure you give it a good try! Let us know how it goes! Blessings!!! Posts: 477 | From Pennsylvania | Registered: Nov 2015
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dbpei
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posted
I love hearing this, foxy! Let's hope your doc is right. I will try to write with an update in a few months.
Thanks for the encouragement. Posts: 2386 | From New England | Registered: Aug 2011
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Bartenderbonnie
Frequent Contributor (1K+ posts)
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posted
You poor thing foxy loxy.
I hope you can figure out a way to get IVIG.
First, you HAVE to get insurance.
I know if you have a skin punch biopsy and are diagnosised with small fiber sensory neuropathy( pins and needles, numbness) that would qualify you for IVIG.
I had a fight with my ex primary doc( had him over 20 years) so I quit him.
I got a new primary who listened to my story, and ordered me complete blood work. Within 7 days of meeting this new doc, I had 2 diagnoses.
He sent me to immunologist, who made me do the vaccine challenge to see if my immune system developed antibodies.
I didn't produce any antibodies after a 4 week break between vaccine and new blood work.
I was diagnosed with CVID.
I was approved for insurance covered IVIG for 6 months.
Total time involved was 2 months for insurance protocols.
So weird you posted this today because today was the day they dropped off all my supplies for my 1st infusion tomorrow morning.
Let me tell you, it really sinks in, how things got to this point. Especially when they wheel in pole, computer, box of tubing, port, plasma.
But if your on IV antibiotics, I m pretty sure they can shoot plasma through your port. Your a pro at this.
I have nurse who will come to my house and do everything.
I refused subQ. I have Neuro tremors, twitches, and jerks. I can't hold a cup of coffe, let alone a needle. Plus I have blurry eyes with glasses on.
I share everything with my lymenet friends, so I ll post all my experiences with you warriors.
P.S. And thank you dbpei for sharing your experience. It helped me immensely.
PS.S. And thank you to all the others who posted also.
Posts: 3075 | From Florida | Registered: Nov 2016
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dbpei
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posted
I hope that IVIG helps you BB! We are both starting this around the same time so it will be good to have someone to compare notes. I will look forward to hearing about your experience.
Foxy, my IGG and IGM were a little low in the past but are now lower than they were a few years ago (just a little lower) and that is probably why my doc thought it was the right time to try to get coverage.
It is possible that in the near future, things could change and your insurance might cover. I sure hope that will be the case for you. Thanks for all of your kind support.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
A skin biopsy proving small fiber neuropathy is not enough to get insurance to cover IVIG. You need to have a proven autoimmune component to your neuropathy.
Posts: 30 | From Wisconsin | Registered: Sep 2016
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posted
Dbpei, the (side) effects of the infusion that you describe are 'normal' with IVIg therapy. Especially the flu-like feeling is very common.
If it is too much to tolerate you can ask the nurse to try to decrease the infusion rate. Usually that helps a lot.
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dbpei
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posted
Thanks Notti. I didn't start feeling that poorly until hours after my nurse left. She went very slowly throughout the entire day, taking my vitals every so often and only increasing the rate when we both felt my body could handle it.
After about 7 or 8 hours, I was at a higher rate that we both thought I could handle. I felt tired and my tinnitus was really bad toward the end of my infusion. But by bedtime, I was shivering, achy all over and very scared.
That is when I remembered my nurse telling me I could take benadryl and motrin following the infusion if I felt poorly. So that is what I did and it helped me to sleep and get through the night. I woke up feeling better - but just worn out - as though I was getting over the flu.
It seems like I had a delayed reaction. I wonder if it would have helped to take more motrin and benadryl earlier... Or perhaps the last dose was too much too fast.
Posts: 2386 | From New England | Registered: Aug 2011
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Bartenderbonnie
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posted
I want to clarify my post.
I thought I was getting IVIG plasma. But I got Gamunex-C. Immunoglobulin. It is a clear liquid.
On the morning of the infusion, I was so sick with sinus infection, face and ear pain, headache. Felt like I got hit by a bus.
I wanted to cancel. But if I canceled every procedure because of how sick I am, I would never get anything done.
So I took packet of alka selzer cold and 1 Claritin. Instant relief.
I hope I didn't ruin the treatment though. I don't know if I did the right thing but had no post treatment adverse reactions.
Dbpei,
Wow, 7 or 8 hours ? How many bottles did you have ?
I had 4 bottles. Treatment lasted 3 hours.
Are we hoping it's our "ace in the hole?" You betcha !
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dbpei
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posted
BB I don't remember how many bottles were used, but it was 50 grams of IVIG plasma all together that I received, plus a large bag of saline solution to start.
I am glad you decided to stick with things after taking the alka seltzer and claritin and they provided some relief. I think Benadryl is an antihistamine, so perhaps it works in a similar way to Claritin. Who knows, you may be on to something!
Posts: 2386 | From New England | Registered: Aug 2011
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posted
A delayed reaction is very common. It can take 6 hours to 1 week to occur.
Side effects tend to decrease the more slowly it is infused. So perhaps this infusion rate was still too fast for you. It will take some adjusting, but you will find the right rate. The side effects will also likely become milder after the next infusions, because your body will get used to the IVIg.
It's also important to keep yourself well hydrated. Lyme patients are advised against taking steroids (like prednisone) though.
Posts: 109 | From The Netherlands | Registered: May 2014
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dbpei
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posted
I did not know this about the delayed reaction. It looks like maybe we need to go a little slower next time. Thank you so much for this helpful info, Notti!
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Glad to be of help!
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dbpei
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Member # 33574
posted
It has been 10 days since my first IVIG infusion and I am feeling worse now than I did before treatment. I am more fatigued, more depressed, and my cranial neuropathy and ear symptoms are just awful.
I have a lot more sizzling and burning in my head/ears and it feels like they are full of liquid. My jaw and face hurt as though being squeezed
I have a sour taste and smell in my mouth no matter how often I brush my teeth or use a neti pot. But I don't feel as badly as I did the first night after a full day of IVIG treatment (like I was hit by a truck).
For those of you who have done IVIG therapy, did you experience similar? At what point did you feel this treatment was of benefit to you? I am really scared that this might not be the right treatment for me.
I don't know if this is just one big long herx as a result of the new antibodies fighting off my illness the way my old ones should have been. It is scary because I can't imagine myself getting loaded with anymore antibodies unless I start to feel better before next dose, which will be in a week and a half.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Sorry to hear this! maybe you should call your doctor!!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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dbpei
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Member # 33574
posted
I did call and report how I am feeling. I haven't actually talked to the doc yet, but at least she knows. My infusion nurse thinks I feel worse due to IVIG induced herx. She said my doc may change next dosage or recommend other things to do to help.
I am on a lot of ABX and perhaps they are working better now with new antibodies. I just don't want to stress my body out too much. I decided to use Rife machine today using detox and tinnitus settings. Hoping that will help.
Posts: 2386 | From New England | Registered: Aug 2011
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TF
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Member # 14183
posted
dbpei, I suggest you do every form of detox possible.
Take Alka Seltzer Gold 4 times per day with lemon or lime. Drink lemon water all day long--lots of it. etc etc.
Hoping this will provide you with some relief.
Detoxing is always necessary for the patient to feel better.
If you have any glutathione, take that. Epsom Salts baths, etc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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dbpei
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posted
I appreciate the advice. I forgot about these good old detox methods. I have them all on hand. Will try some of these.
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Bartenderbonnie
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posted
Sorry to hear dbpei.
We fight so hard to get well.
Today is 1 week since my infusion.
No noticeable improvement. But I don't think that means it's not working. I just think it will take time. I m taking one day at a time and documenting my progress.
We have been sick for so long, our bodies have taken a beating.
Nothing is a quick fix. We are in it for the long haul. Keep your fingers crossed and hang in there friend. Posts: 3075 | From Florida | Registered: Nov 2016
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Bartenderbonnie
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posted
Progress report.
I had my 2nd IVIG treatment yesterday. I took alka selzer and Claritin in the morning before IV.
Everything again was piece of cake. Normal blood pressure and oxygen readings throughout procedure.
I have been extremely exhausted the past 2 weeks. Have had cat-scan, ultra sound, numerous blood and urine tests.
And my infamous cat scratch on Easter.(posted picture).
Anyways, after nurse left yesterday, wanted nap so bad but couldn't relax, calm down. Pacing from room to room. Night was scary with constant heart palpitations. Took 1/2 Xanax in 4 hours intervals, plus low dose aspirin. Finally was able to sleep. Horrible night.
I can only attribute this to 3 things. . .
Something in IVIG upset my system Cat scratch infection Too much iodine from applying it on my scratch continually
Today alittle better.
Off to urologist for cathedral treatment. And results from cat scan and blood and urine tests. Wish me LUCK ! ! ! ! ! ! !
Posts: 3075 | From Florida | Registered: Nov 2016
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TF
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Member # 14183
posted
Good luck!!! Give us a report when you can!
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dbpei
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posted
IVIG makes me very tired so maybe that is part of what is happening to you BB. I think it might also make me feel sicker from my ABX treatment but as I approach the end of my 3 weeks, I seem to feel better. I am also not sleeping as well at night, even though I am tired. I wake up a lot and sometimes my mind just won't slow down.
Your cat scratch certainly didn't help. I checked out your post about the cat scratch. It looks nasty, but your kitty is adorable! I can tell she didn't mean it. Is it healing up okay now?
You have a lot going on. Good luck with everything and keep us posted!
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Bartenderbonnie
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Member # 49177
posted
Good news to report. ❤️
Just finished 3rd IVIG treatment. Feeling SO much better ! Thank you to my guardian angel.
You know that dreadful hangover feeling the minute you open your eyes in the morning ? (I know you do). IT'S GONE ! That was major improvement, made me cry tears of joy.
Also:
Tinnitis finally on back burner ( I know, major, right ?) IC bladder pain gone. Canceled my urologist appointment today. Enough already. Vertigo and dizziness significantly improved Energy level significantly improved.(major) Headaches totally gone. Smile more than cry
I would say I m 50% better. I would attribute this to:
1. Good LLMD 2. Antibiotics 3. Supplements and diet 4. IVIG treatments 5. Time. ( Dr B says gender definitately plays a role in Lyme. Men generally respond to subtle improvements in 3 months, women 6 months). I will finish month 6 of Lyme and Bart treatment the end of May.
As I continue on this journey, it is my opinion that Lyme is an immune system hijacker. How else to explain why some of the population who test positive, show no symptoms what so ever ?
My goal is not to cure, but to get to dormat stage. Healing wishes to all Lyme warriors. Posts: 3075 | From Florida | Registered: Nov 2016
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TF
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Member # 14183
posted
Hallelujah! Yes, yes, yes!!!!!
Wow!
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dbpei
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posted
I am so happy for you Bartenderbonnie! This is such great news!
I started my IVIG around the same time as you and although my improvement is not as pronounced as yours, after my 4th treatment, I am noticing some subtle changes for the better.
Fingers crossed I am on the right path. It is so very encouraging when we see some improvement. I have noticed for me that I feel worse after my IVIG treatments and within a week before my next treatment, I start to feel better.
This could be caused by a prolonged herx with the good antibodies fighting for me during those first couple of weeks followed by a period where my body is able to clear the toxins. That is my hunch, anyhow, as to how my body is handling these new soldiers.
I hope you continue to feel better and let us know how you are doing! Posts: 2386 | From New England | Registered: Aug 2011
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posted
I am glad to read some good progress here. my primary dr has an rx set up for me to go in for IVIGG. i have been nervous because i am pretty much on my own..not sure if i can drive home afterword?? any ideas?
also i have been told i have the "dreaded" mold gene and i need to live in an environment with low level mold. while i dont see any mold here i know there has been water damage to the building and it tested a 16 on HERTSMI score.
i guess the ivigg might be the next "easy" step. i hope it doesnt cause my immune system to flare up and freak out regarding the "mold" issue.
my previous LLMD said he had no idea what would happen and that i need to move before i could see him again. not much help.
Posts: 34 | From california | Registered: Jan 2015
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Bartenderbonnie
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posted
I don't like ultimatums. They are final actions. There is almost always a compromise solution. A meeting of the minds to find what works for BOTH parties, as you and your doctor should be a team.
Maybe you could move in the foreseeable future, but that doesn't help you now. To be told to eliminate all sugars from your diet is one thing but to be told to elimate your home is quite different.
If my LLMD gave me an ultimatum to get rid of my cat, I would have to find a new LLMD. Of coarse, a compromise would be refraining my cat to sleep with me or have access to my bedroom.
A high quality air purifier might be an option for you. A compromise maybe your doctor would be open to ?
You stated your LLMD said he didn't know what side effects IVIG would have on you due to your mold gene. Well, he should know ! Mold pays an important part in TBI's..
As for driving after a treatment, I find I am very tired. Unable to sleep though. Sort of an internal wired. I get home nursing to come to my house. Does your insurance offer that option ? How about a curtesy van for transportation ? I have driven afterwards with no problem. It's usually the day after a treatment that I find I am horizontal for the day.
I sure hope someone pipes in here about your mold issues. We all learn from each other here at lymenet.
dbpei, You are spot on about symptoms prior to treatments and after treatments. 1 week before and 1 week after are noticeable but manageable. Fatigue being the most major. Step in the right direction but we are gonna need a lot more time, unfortunately.
Keep on keeping on . . .
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My issues are largely anxiety and autoimmune. So the headache and fatigue were permanent or only while she was going through this?![[Frown]](frown.gif)
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