Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Need input on how to proceed. . .
Just returned from consultation regarding acceptance into IVIG treatments. I ve been diagnosised with CIVD (common immune variable disorder.)
I have been told by my LLMD that without IVIG treatments, I would never get better.
My immunologist said I was a PERFECT candidate and sent referral, blood tests, and office visit notes.
But at today's consult, they said I would have to halt all my Lyme antibiotic treatment and recieve a Pneumovax vaccine. I would wait 4 weeks after the shot and have blood work draw to determine if my immune system produced antibodies.
I refused the vaccine until I cleared it with my LLMD. When I returned home, I called LLMD but the office is on holiday until the second week of January.
They also said the vaccine wasn't a live vaccine so I couldn't get sick from it, yet they said they would prescribe me Bactrim for 4weeks.
So I asked them why I would need Bactrim. And they said I have no antibodies for pneumonia. 0 out of 23 antibodies titters from recent blood work.
I look and feel like the walking dead.
They also said NO insurance company will approve of IVIG treatments unless this necessary step is taken first.(vaccine).
Any input appreciated.
Especially would love to hear from Pocono Lyme or Rumigirl.
Posts: 2977 | From Florida | Registered: Nov 2016
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I would just take antibiotics and not tell them you're doing it. Abx has nothing to do with viruses and you can certainly get sick with a virus while you're on antibiotics.
Posts: 2057 | From Florida | Registered: Feb 2015
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Here we go again.
What to treat.
When to treat.
How to treat.
Finding someone to treat.
(But meantime, God forbid, don't eat 1 slice of pizza or 1 homemade x-mas cookie or you ll suffer greatly.)
Posts: 2977 | From Florida | Registered: Nov 2016
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
It's really too bad that your LLMD is on vacation for now, as you should get his/her input.
HOWEVER, there are several indications for IVIG, one of which is small fiber neuropathy, which many people with Lyme have, although not everyone knows it. To see if you have SFN, you would get a punch skin biopsy to test to see if you have reduced nerve fibers. They now can also test to see if you have autonomic nerve fibers affected, too, via nerve fibers affecting the sweat glands.
If you do have it, and the likelihood is good, the protocol would be IVIG at a greater dose and at a greater frequency. You would have to find a doctor that does that test, which, hopefully, your LLMD knows. Or you could also ask your local Lyme group (via online or in-person group) who does that test nearby, someone who is Lyme-friendly, hopefully. I know who is good up north, but not down in FL.
So, either you can wait and do that test, or you could do what Jordana suggested. If I were you, I would leave a message, or email, your LLMD's office to see if they have anyone monitoring for important questions, like this, while they are on vacation.
Going without your abx for that long, while exposing yourself to the pneumonia vaccine is worrisome for people like us; many have gone through the same situation.
Try to see if you can get a message through to your LLMD's office; surely there must be some on-call phone contact (I hope!).
sammy has gone through this, so she may have some input on this, too. (I hope it's ok that I said that!).
Posts: 3771 | From around | Registered: Mar 2008
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posted
I don't know the answer to your questions, but I do know that my daughter's immunity was low and she got the Prevnar vaccine last Feb.
She had terrible arm pain from it that lasted over two weeks. I do think they need to prove whether your numbers can rebound with this?
She was on Amoxy for three months afterwards (to "protect her" since she had low antibodies) before she was retested. At that time though we have moved on from Immunologist and were seeing LLMD who felt co-infections were the cause of her issues.
She conts. to have lower immunity, but was able to maintain a lot of what was provided by vaccine.
Posts: 62 | From VA | Registered: May 2016
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Have you shared your IgG and IgA levels somewhere here? I've read if your IgG is <200 no vaccine challlenge required. Otherwise - yes - one needs to do the VC to get approved.
I did the Pneumovax 23 and HiB. I'm sensitive to everything and did fine with the vaccines. I failed the Pn23 but passed the HiB. Apparently the Pn23 is the most important one to fail to qualify for Gamma replacement. So I qualified for IVIG/SCIG.
To mention: IIRC there's a theory that those who respond feel sickly after the vaccines. Those who don't respond don't. Makes sense if the immune system doesn't react.
Some insurance companies - and doctors? - require a VC for viruses - like tetanus.
The Pn23 and HiB are for bacterial pathogens.
I'm not sure if taking your Lyme Abx would effect the challenge one way or another. ie "help" you pass or fail.
I assume you want/feel you need to be on IVIG/Gamma replacement - thereby needing to do the VC and fail it.
Someone mentioned taking your Abx anyway - not telling. You could do that - probably anyway fail the VC and get what you need.
If you passed - ask to get the post vac. titers retested. Off Abx for a month to do so.
If you had zero protection on your Pn23 pre vaccine titer test - I have a feeling you would fail the Pn 23 VC. Just make sure it's the Pneumovax 23 and get it documented.
Hope this helps.
-------------------- 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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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Think perhaps about your insurance coverage. It is not a sure thing if you get the vaccine and meet the criteria that you will be approved.
Since it is a life-long treatment that will need to be re-evaluated ever so often, that is another consideration. Insurance could insist you go thru the same procedure over and over again and can deny it at any time for no reason at all.
This organization, Immune Deficiency Foundation, has a patient advocate you can speak with about your treatment and insurance issues, and a list of FAQ.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Columbia states:
Mild infusion-related reactions occur often but these can often be controlled by slowing the infusion rate or by symptomatic medications.
Serious adverse effects, although rare, may include thromboembolic events (esp among patients with pre-existing vascular disease), renal failure (among patients with renal insufficiency), anaphylaxis (esp among patients with IgA deficiency), or septic meningitis (especially among patients with migraine).
Patients with these risk factors should carefully discuss the risks and benefits of IVIg treatment with his/her physician. At this point, given the lack of systematic or controlled studies, IVIg for Lyme neuropathies is an experimental treatment.
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Such GREAT advocates for the suffering of Lyme.
P.S. Tincup, I read all of your posts. I m a big fan ! Thank you for sharing all of your knowledge.
Posts: 2977 | From Florida | Registered: Nov 2016
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quote:Originally posted by Rumigirl: HOWEVER, there are several indications for IVIG, one of which is small fiber neuropathy, which many people with Lyme have, although not everyone knows it. To see if you have SFN, you would get a punch skin biopsy to test to see if you have reduced nerve fibers. They now can also test to see if you have autonomic nerve fibers affected, too, via nerve fibers affecting the sweat glands.
Small fiber neuropathy is not a condition that is approved for IVIG. You have to have a specific autoimmune condition (for instance Sjogren's Syndrome) along with the small fiber neuropathy.
Posts: 30 | From Wisconsin | Registered: Sep 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well, thank you for the kind words BB! Nice to see some "nice" in the new year.
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
You've just been diagnosed with a life- altering Immune Deficiency (CVID), you probably feel stressed and overwhelmed by the whole situation.
I also have CVID and have learned (the hard way, from experience...) that you really must complete the Vaccine Challenge if you are needing to be evaluated for a Primary Immune Deficiency.
Insurance companies are notorious for challenging diagnoses. If you do not have ALL of the standard requirements, they will deny your treatment request.
Insurance Co's are difficult to please. They may even force you to stop the IVIG for at least 3mo to "see how sick you get" then have you rerun many tests again each month for another 3mo to prove your diagnosis. (That happened to me, I had more than enough proof for my diagnosis. Insurance Co decided to see if my condition was temporary...)
Insurance Co's typically require IVIG recertification every 3-6 months to evaluate your current state of health. This includes immunoglobulin titers but you will NOT have to repeat the vaccine challenge once done completely. (Even if you change insurance groups, your tests will follow you!)
Back to the vaccine challenge I was given the Pneumovax, Prevnar, and Hib vaccines. (Not all of those are required but they are helpful with diagnosis and special treatment. Some immune deficiencies only show up with the vaccine challenge...)
My (very well known and highly respected) LLMD assured me that the vaccines would not cause my Lyme to relapse or get worse. All I felt afterwards was 1 slightly achy arm after 3 shots! No other noticeable effects!
The vaccine challenge is very important because when compared to previous titers, they can show IF you respond and build appropriate antibody response. What happens with the vaccine translates over to your body's response to viruses and bacteria.
When you do not respond to a certain vaccine, that will show your doctor what specific type of infections you will be more prone to catching and have more difficulty fighting off. This is very very important.
I know that it is a difficult decision for you. I hope that you have an LLMD and Clinical Immunologist to help you.
PrimaryImmune.org is a good resource for more information.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I've been in a similar situation for the last three years. Need IVIG but have no diagnosis for it. It is also used to treat neuromuscular disoders (of which I have) but I'm getting the run around from drs and not getting the proper tests that I need. Let me know if you have any success getting these infusions.
-------------------- I have severe light sensitivity so please be patient as I have difficulty using a computer. Posts: 28 | From Los Angeles | Registered: Dec 2015
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hi Hotsun, so nice to meet you.
I will share my experiences with IVIG.
I started on dec 27, 2016 on quest for IVIG.. It took 2 months starting with vaccine challenge, blood work, immunologist appointments (necessary) to get approved by insurance. IVIG started in March.
It has now been 6 months of treatment so I m in the process of getting recertified.
After 2nd month of IVIG, I woke up with that AWLFUL hangover feeling gone ! No toxic feeling. Pain level lowered. Energy level higher. I have steadily made major improvements the past 6 months.
I attribute gains to a variety of things, not just IVIG. Aggressive antibiotics Clean diet Sleep IVIG Supplements Epsom salt baths Just added weight resistance and exercise
I ve also had some MAJOR relapses. IC bladder surgery 2 new tick bites Diverticulosis
I almost fainted when I looked at today s date. It is now August 2017 and I haven't been able to work since June 2016 !
So I must add that it takes a long amount of time to get well regardless of treatment options. It s a horrendous disease.
Hope this helps. Wishing you well.
Posts: 2977 | From Florida | Registered: Nov 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
I know it's just a bump in the road. This too shall pass. I believe a change in meds is the culprit. Otherwise, month 9 was the best I ve felt in a long, long time !
Posts: 2977 | From Florida | Registered: Nov 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
UGH! Sorry to hear it Bb. I don't believe there was anything more depressing for me than to get to a good point, then get bad again.
Those were times I doubted everything and wasn't sure living was worth it. Thought I'd never get better.
But, I did. It was just really tough when that happened.
Don't know why this happens, or if you know this, but it is fairly typical for people to get rid of their first symptoms last when treating.
Scientifically it isn't explained, but it is quite common. Weird, but common.
So this may be a good sign in that regard.
However, I hesitate to call it good. When people would say herxing was good I wanted to jack slap them across the room! Nothing is good about this rotten stuff! HA!
Hang in there little darling. It will get better once again. It will.
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Agh, trying to give you guys my update on IVIG treatment month #9.
But re-reading Tincup's replies to me on this post, well, it just goes to show you what a truly remarkable human spirit she is. Please donate what you can afford to help her. ❤️❤️❤️❤️ https://sites.google.com/site/marylandlyme/home Clink on Hurricane Irma
So I feel a lot better. IVIG definitely adds to the arsenal.
I returned to work. It's only a 4 hour shift once a week but this is H U G E !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
The next day I was bedridden, but I'll take it.
I never thought I would be able to continue my profession. I was researching other employment opportunities that would allow me to call in sick routinely, because that's the health of a Lyme patient. Unfortunately there 's no employer for us.
So, well it's only a start of better things to come, I just had to share with my lymenet family of warriors.
Keep fighting, keep treating, and never give up. Posts: 2977 | From Florida | Registered: Nov 2016
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I just got recertified for another year of IVIG treatments.
Apparently I'm in this for the long haul. Keep treating, keep fighting, just keep standing 💚
Posts: 2977 | From Florida | Registered: Nov 2016
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quote:Originally posted by Rumigirl: ...To see if you have SFN, you would get a punch skin biopsy to test to see if you have reduced nerve fibers. They now can also test to see if you have autonomic nerve fibers affected, too, via nerve fibers affecting the sweat glands.
therapath.com is one lab that does the skin punch biopsy testing.
Recent studies use this in connection with Fibromyalgia (look on Pubmed for studies by Caro, Xavier).
Why can't IVIG be made from healthy Lyme survivors who can provide the exact antibodies to fight and keep Lyme and company in check ?
Maybe not recommended for all IVIG patients but for Lyme patients ?
Blood transfusions and plasma donations are routinely provided to sufferers of other diseases, such as Ebola, from survivors, which have tremendously helped in life and death situations. Instant antibodies to help immune system.
I think research in this area sounds promising and feasible.
Posts: 2977 | From Florida | Registered: Nov 2016
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Bartenderbonnie~
I suspect that the "shape shifting" nature of Lyme might require the body to continually make different antibodies to keep it in check.
If this is the case, providing the "exact antibodies" necessary at any given time might not be possible, as they would need to be constantly changing. Just a thought.
Have any of you here considered mild hyperbaric? If so, I strongly suggest reading the entire thread if you are able. Many people are having success (and I have been very well for over 5 years).
Mild hyperbaric increases/modulates immune function, releases stem cells, stimulates nerve/tissue regeneration, and much, much more. Plus, it is non-invasive.
Posts: 1885 | From Earth | Registered: Jul 2013
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Hi Phoiph,
I always read the mild hyperbaric thread. I would LOVE to try it.
I researched all the conditions that are insurance covered for mHOBT and I would not qualify.
So, like many here at lymenet, I simply cannot afford it. My Lyme treatment has bankrupted me. CDC has failed us. But I believe a change is imminent . 💚
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
Fear not, Lyme (and other tick-borne disease) friends. IVIG therapy is evolving all the time; in the way that it is being approved for various diagnoses.
“An analysis of the medical records of patients treated at Massachusetts General Hospital (MGH) for an often-mysterious condition involving damage to small nerve fibers supports the hypothesis that some cases are caused by autoimmune disease and also identifies the first effective treatment option. This report on 55 patients diagnosed with what appears to be autoimmune small-fiber polyneuropathy (SFPN) finds that treatment with intravenous immunoglobulin, used to treat other autoimmune and inflammatory conditions, provided symptom relief and improved nerve function for most patients, allowing some to discontinue treatment.
"This is a proof-of-concept finding that dampening the body's immune system may be safe and effective for treating apparently autoimmune SFPN, a condition that most patients don't even know they have," says Anne Louise Oaklander, MD, PhD, director of the Nerve Unit in the MGH Department of Neurology and the senior author of a paper receiving advance online publication in Therapeutic Advances in Neurological Disorders. "This is the first treatment that has the potential to actually improve the nerve damage, not just block symptoms with drugs such as opioids that don't address its cause."
SFPN involves widespread damage to the tiny nerve fibers that carry pain signals and control internal functions such as heart rate, blood pressure and sweating. Patients often develop chronic pain, fatigue, weakness or fainting when standing, rapid heart rate or gastrointestinal problems. Common causes of SFPN include diabetes and chemotherapy-induced nerve damage, but this paper studied some of the 30 to 50 percent in whom no cause is found when they are first evaluated, leading to a diagnosis of "idiopathic" SFPN. Studies from Oaklander's group and others have suggested that some such patients have a previously undiscovered autoimmune condition.
In a 2013 study published in Pediatrics, Oaklander's team reported the first evidence that SFPN commonly affects children and adolescents. While these otherwise healthy young people didn't have any medical explanation for their neuropathy, the researchers noted that many had personal or family histories of autoimmune illness or blood test evidence of immune/inflammatory activation. This and other evidence led the team to propose the existence of apparently autoimmune SFPN (aaSFPN), in which the immune system directly attacks small nerve fibers. Several other types of nerve damage, including Guillain-Barré syndrome, are caused by autoimmune attack against large nerve fibers, and systemic autoimmune disorders such as rheumatoid arthritis and lupus have been linked to SFPN, lending a solid basis to the hypothesis.
The 2013 Pediatrics study also reported that treatment with steroid drugs or immunoglobulins improved 12 of 15 treated patients. Steroids had been found helpful in a few other published cases, but since their long-term use cause significant adverse side effects, the current study focuses on the outcomes of treatment with intravenous immunoglobulin, a treatment that is FDA-approved for a wide variety of immune disorders and can be prescribed off-label for other immune conditions.
The team examined medical records for 55 patients who met their criteria for SFPN diagnosis, had no evidence of non-immune causes and who were treated at MGH with intravenous immunoglobulin at a starting dose of 2 grams per kilogram of weight every four weeks. All but four were treated for at least three months, the others discontinuing because of side effects. The team studied nine types of follow-up data, all of which showed improvement - 74 percent of the 51 patients rated their symptoms as improved after treatment, as did 77 percent of their physicians. For 8 patients, symptoms improved so much they were able to taper off and eventually discontinue all treatment.
"This study is wildly surprising," says Oaklander. "Although not a controlled clinical trial, it is paradigm-changing because the fact that an immunomodulatory treatment was effective is the strongest evidence so far that some people have an autoimmune cause of SFPN that can be improved. This paper offers not only a new class of treatments but also further evidence of a new disease discovery. While immunotherapy isn't for everyone with SFPN, patients with idiopathic SFPN should be systematically screened for all common causes, push their physicians to identify their specific cause and discuss disease-modifying treatment options. I'd also urge insurance companies, which are reluctant to cover this expensive treatment, to be more willing to consider covering three-month trials in appropriately diagnosed patients."
An associate professor of Neurology at Harvard Medical School, Oaklander stresses that this "real-world" retrospective case study needs to be validated in a prospective, randomized clinical trial, something her team is seeking grant funding to conduct. She notes that learning more about the mechanisms behind aaSFPN and tracking outcomes of other treatments should lead to less expensive and easier to manage immunotherapies than intravenous immunoglobulin. In the meantime, patients with SFPN and their physicians can find more information, including a list of recommended blood tests, at https://neuropathycommons.org/.”Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
quote:Originally posted by Bartenderbonnie: Hi Phoiph,
I always read the mild hyperbaric thread. I would LOVE to try it.
I researched all the conditions that are insurance covered for mHOBT and I would not qualify.
So, like many here at lymenet, I simply cannot afford it. My Lyme treatment has bankrupted me. CDC has failed us. But I believe a change is imminent . 💚
Bartenderbonnie~
You are correct that insurance won't pay for hyperbaric treatments for chronic Lyme.
That should not stop you. Many people with limited to zero funds have rented-to-own a home chamber (from a trusted resource I can share). Lymeboy/Tickboy is a perfect example. He used crowd-funding to pay for his first months, then became well enough to work to continue making payments on his own.
Another possibility that has been successful is to share expenses and use of a rental chamber with a few other people. If you can get 4 people together, you can reduce the cost to about $4.00 per person, per daily session.
I'm always more than happy to help people get started if anyone is interested.
(BTW, I had severe, constant burning neuropathy from head to toe for 8 years, and it is gone, thanks to mHBOT.)
Posts: 1885 | From Earth | Registered: Jul 2013
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
You are 100 % correct Phoiph.
If I put my mind to it, I could make it happen. Posts: 2977 | From Florida | Registered: Nov 2016
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
That's the spirit, Bonnie!
Anything is possible, including wellness. I'm living proof of that...
Posts: 1885 | From Earth | Registered: Jul 2013
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