Hi. I see a LLMD whom I'm very pleased. In order to try to get IVIG via insurance, my doc recommended doing blood work pre and post the pneumococcal vaccine.
I've come across conflicting info as to whether or not this could be harmful for Lyme and Babesiois patients.
Any information would be appreciated.
Posted by Keebler (Member # 12673) on :
- Which doctor is recommending the vaccine? Your GP?
I see that you posted in a different thread that "My doc is doing the pneumococcal vaccine to see if I qualify. You have to get the right tests done pre-vaccine and post-vaccine." (end quote)
Still, not clear if your GP is doing this or your LLMD. There is no way I would take this particular vaccine just to try to qualify for some test.
Absolutely not for me, no matter what. I have had serious and long term damage from various vaccines over the years. [Before I knew I had lyme and other TBD] One cost me a year in bed and set seizures in motions.
Do your own research, of course, but never - ever - feel like you must jump through insurance companies hoops that could cause damage. There are always other ways to approach your treatment options. Always other ways. -
Posted by Keebler (Member # 12673) on :
• As of September 1, 2015, there had been 47 claims filed in the federal Vaccine Injury Compensation Program (VICP) for injuries and deaths following pneumococcal vaccinations, including 6 deaths and 41 serious injuries.
• Using the MedAlerts search engine, as of September 30, 2015 there had been 14,867 serious adverse events reported to the Vaccine Adverse Events Reporting System (VAERS) in connection with pneumococcal vaccinations (PCV-7, PCV-13).
Over 60% of those serious pneumococcal vaccine-related adverse events occurred in children six years old and under. Of these pneumococcal-vaccine related adverse event reports to VAERS, 1,706 were deaths, with over 70% of the deaths occurring in children under six years of age.
• Reported pneumoccocal vaccine reactions include fever, severe local reactions (swelling, redness, pain at site of injection), irritability, drowsiness, restless sleep, vomiting, diarrhea, rash, decreased appetite, convulsions, asthma, pneumonia and sudden infant death syndrome (SIDS). . . .
[Ingredient link further down] -
Posted by Keebler (Member # 12673) on :
- I know you are approaching this for reasons of insurance coverage for IVIG (which as stated above, I think is ridiculous & also dangerous for anyone ill to take vaccines) still, I'm not saying that illness prevention is not to be taken seriously. It should. Yet . . .
as for either viral or bacterial protection - as well as for immune support - there are many ways to approach such. Many.
A good naturopathic doctor is good to have on your team in advance, when at all possible. And, for those with lyme, of course an ILADS educated LL ND.
In states - or with budgets - where access is not possible, there are many good books, articles, websites in the set below.
I suggest starting by reading all of Harrod Buhner's books on lyme and coinfections. His work is excellent.
Herbal Safety considerations & reference books; etc.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches with links to articles, books, methods . . . . -
Posted by WPinVA (Member # 33581) on :
I am in the same boat so I will be interested to hear the responses. My immunologist ordered the vaccine but I'm holding off for now so I can talk to my LLMD. I don't want to take it either.
I agree that it's ridiculous that this is how insurance makes you do it in order to qualify for IVIG, but I also don't know if there is any way around it.
I don't think most people can pay for IVIG on their own.
Posted by Keebler (Member # 12673) on :
- One thing to also consider is that the immune system in someone with lyme or other chronic stealth infection is not likely to react - to anything - in the same as in someone who is free of lyme / TBD.
So, if one is trying to jump through insurance hoops and hope to respond "by the book" to a vaccine -- that just might not even happen.
Experienced LLMDs are best to ask about individual cases. -
Posted by baldone (Member # 43172) on :
Got a Pneumovax shot first week of December. 2 weeks later started getting weird numbness issues and a sore neck then woke up on a Sunday with the most excruciating neck,shoulder,arm pain I have ever had.
Went to the ER and gave them the low down but the ER doc said it was Cervical Radiculopathy and loaded me up with muscle relaxants and pain killers.
For the next two weeks I could not sleep more than 4 hours and would then need more meds.
Finally now a month later I can sleep at night but still have tingling in my hands and weakness in my right arm and shoulder.
I am now 99% sure what I have is Brachial Plexus Neuritis triggered by the Pneumovax.
For the first time in my life I am thinking about seeing a lawyer to help recover the two weeks of lost work and misery that damn shot gave me.
Posted by me (Member # 45475) on :
Thanks for the responses. My LLMD, not Gp ordered it.
Posted by Keebler (Member # 12673) on :
- Is your LLMD ILADS educated - & familiar with all the lyme conference presenters' information over the years? Has she / he been practicing many years and have a full load of only lyme / TBD patients (who have mostly been successful)?
Do they have good reports from many at your local and state lyme support groups?
Another thing to consider is that if you are doing a test to determine how you react to the vaccine, then all - any - support supplements should be discontinued for maybe a week prior and until after any tests done.
This could put you at a disadvantage as - if a vaccine might be required for some reason - it's always best to take support measures before and after to, at the very least,
help offset the aluminum and formaldehyde ingredients and other additives [not that support supplements are guaranteed to offset potential damage but they might help]. But that could alter the test results. -
[ 01-27-2016, 08:35 PM: Message edited by: Keebler ]
Posted by susank (Member # 22150) on :
"Me" - I can't remember if you said you had your total IGG and IGA (and perhaps subclasses) tested.
If yes - are they low? Is that why your LLMD is suggesting IVIG? Or for another reason?
My story: A few years ago I was Dx'd as having Hypogammaglobulinemia - ie HypoG. Total IGG in the 500's. Subclasses subnormal. Total IGA low end of normal range.
My doctor tested my IGG and subclasses levels three months in a row. All three times they were low. She did a titer test for Strep Pneumonia and it came back non protective. My tetatus titer test came back protective. We did not do the vaccine and check to see how I responded. I think my doctor was concerned about me doing it. My insurance company did not require it. I was approved for IVIG. Cigna PPO. I was clueless about the whole approval process. When my Cigna insurance ended I had to chose a Medicare plan. I had read everything about their approval process. Requiring very low Globulin levels and the vaccine challenges - for starters.
Anyway I chose a Medicare Advantage Plan - and my doctor submitted the same records for approval - still w/o vaccine challenge. (By this time my IGA had fallen to be out of range - putting me more in CVID classification than just HypoG).
I was approved. After reading all the horror stories - I was surprised.
So two insurance companies approved IVIG/SCIG for me w/o the vaccine challenge.
It can happen though where one can have an immune deficiency that only can be found through failed vaccine challenges. ie Normal total IGG and IGA but poor response to the vaccine. That can qualify one for IVIG.
If levels are low and you don't want to do the challenge I would suggest doing the paperwork for approval - showing labs and history of infections. Submit w/o vaccine challenge info. You might get approved.
FWIW I am seeing a new allergist/immuno and he discussed doing the challenge. I think he would prefer that I do it - to satisfy himself I need Gamma - or just to get a better picture of my immune system - I don't know.
My insurance company has not required it - so perhaps I can explain to him why I don't want to do it. I think - and hope - he will understand and not require me to do it.
Yes, I would like to know if would pass or fail - but don't want to risk any possible complications from the vaccines.
Point: if you are low - out of range - IGG and perhaps IGA - submit what you have and see what happens. The vaccines might not be required.
"Me" - I will try to call you back Thursday evening. I'm real tired from doctor's appointments this week.
Posted by Lymetoo (Member # 743) on :
That's HORRIBLE, Baldone!!! I'm very sorry this happened to you. Sue them to the max.
NO WAY FOR ME .. NO WAY.
Posted by Neko (Member # 46592) on :
When I initially started presenting with immune issues, my immunologist did a vaccine challenge. One thing they had to rule out was if my body was able to mount an effective response. I think they tested me after a flu shot. You can test the antibody response after. I had a stringvresponse so my immune system works, which was a relief.
I don't know what that has to do with IVIG.. I guess to see if your body can respond to that type of treatment?
I received the pneumonia vaccine when I first started developing allergies and asthma. I didn't have any obvious ill effects after. That's actually the last vaccine I have ever received. I've never had issues with any vaccine in my life, besides the flu shot.
My body overreacts to that one and I feel tired and get malaise for 1-2 days. I hardly leave the house anymore so I don't get it, mostly because My asthma under control now so it's just not a priority to me.
A lot of Lyme patients believe they react badly to vaccines. I never have, but that's just me. I tend to avoid any triggers now just in case, since so little is known about Lyme and what's happening.
Though, I will add you can't look at VAERS data and say 1706 people died from that shot. They way they tabulate the data is all deaths are listed, whether or not they are related. Thus some old dude could get the shot, then 3 days later die of heart disease and his doc could report him as a death in VAERS.
It's a database that doesn't necessarily draw conclusions on cause of death or adverse events. Which unfortunately doesn't make it useful for the lay person to interpret. Though it does exist as a post clinical trial monitoring system to pick up on trends and determine if they are related to the vaccine. inimagine if one were so inclined, they could read each account.
Posted by me (Member # 45475) on :
Wow. So much to think about. Yes, my LLMD is ILADS educated and well-respected in the Lyme community. I think I may not do it now. Thanks so much for the input, gals and guys.
Posted by sammy (Member # 13952) on :
If you are needing to be evaluated for a Primary Immune Deficiency, then you really must complete the vaccine challenge.
SusanK has been truly blessed to be diagnosed and to receive treatment without this standard requirement.
Insurance companies are notorious for challenging diagnoses. If you do not have ALL of the standard requirements, they will deny your treatment request. The more info you have on your condition, the better.
Insurance Co's typically require IVIG recertification every 3-6 months to evaluate your current state of health.
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...)
Back to the vaccine challenge I was given the Pneumovax, Prevnar, and Hib vaccines. (Not all of those are required but they are helpful).
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. 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 to the vaccines.
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 an Immunologist that you can trust for guidance.
Posted by Jordana (Member # 45305) on :
IVIG is not the Genius thing everyone says it is. It really depends on how badly you think you need it and what you're trying to get it for.
One analog of IVIG is Transfer Factor AKA colostrum, which is not as laser-intense as IVIG but through the gut it will passively infuse your body with something similar.
The main reason people are given IVIG is because their bodies have forgotten how to make IgG and IgM. There are also subclasses of these IG's that can be low, usually because of mitochondrial dysfunction.
*If you are not deficient in these immunoglobulins or the subclasses IVIG WILL NOT HELP.*
What they are trying to do is see if the pneumococcal vaccine induces an immune response. If it does not, or if it's unsatisfactory, then it will be obvious that you need IVIG.
You will also, obviously, have pneumonia.
I would ask for the test that measures IG subclasses before you give yourself pneumonia to prove to the insurance company that pneumonia can kill you. The PV challenge is less work for somebody but I would just get the data before I submitted to that.
If you have a subclass deficiency, then you can at least say yep, look, I have pneumonia and now you guys are going to have to save my life with special hospital magic and IVIG.
Posted by susank (Member # 22150) on :
Jordana - not sure where you get this info. ???
I remember what Sammy had to go through to get her IVIG. Criminal what they put her through. Her case is about the worst I have ever read about in ref. to insurance requirements.
It's a mystery why she was given so much trouble and I was not. My monthly dose is much lower than hers - so maybe that's part of it?
My point: if your IGG/IGA levels are subnormal - send in that info - whatever else you can as supporting need for IVIG. There is a chance for approval w/o the vaccine challenges.
You don't know until you try.
Posted by Jordana (Member # 45305) on :
Yes susank that's what I was saying.
Testing for IG's and subclasses should be enough to get approved. Getting injected with pneumonia is somewhat beside the point.
Posted by me (Member # 45475) on :
Yes, two of my subclasses are below normal. Also, pre-vaccine, about 58 percent of my pneumococcal testing shows that I am susceptible. Great advice.
Thanks so much for the information. This is all very helpful.
"Susank"-I'm still fighting this nasty sinus infection and bronchitis, but I'm finally In the mend (I think/fingers crossed). I will try and call you this weekend.
Posted by sammy (Member # 13952) on :
Here is an informational link from PrimaryImmune.org about CVID, it's clinical features and diagnosis.
That is the website run by the Immune Deficiency Foundation. It has great information about most all of the Primary Immune Deficiencies that you may be diagnosed with.
Posted by sammy (Member # 13952) on :
Thoughts on some earlier statements...
For those of us that seriously need IVIG, without it we will be hospitalized due to life threatening infections... IVIG is better than GOLD!!
Probably every one here has tried Colostrum, Beta Glucan, and a myriad of other immune support supplements that were sold to us by alternative medicine practitioners before being diagnosed with a true Primary Immune Deficiency. Sadly, my condition did not improve at all with any of them. If they help someone, then Jordana is right, you do not need IVIG!
I see one of the top Clinical Immunologists in the country (not a run of the mill Allergy/ Immunologist). She has done extensive testing well beyond what is recommended and required by the insurance companies to figure out why I have this immune deficiency and where in my cell lines things start to go bad.
CVID is a more known to be B cell problem (due to the deficiencies in IgG, IgA, & IgM). Along the line it is found that the B cells just start to malfunction. This can happen in so many ways and we are all different (They have found many different genetic causes now!). A few problems you can have are more nieve B & T cells, less memory B & T cells, problems with B cell switching... Low NK cell count and function, poor response to common antigens (like candida) making you more susceptible to infection.
My body didn't forget how to make IgG, IgA, & IgM. It's more like I was built without the blue prints for those.
Jordana is right about IVIG not helping someone that does not truly need it. There seems to be a thought here on LN that people believe that if they obtain IVIG that they will get finally beat Lyme.
IVIG just replaces some of the missing Ig, you may have other components of your immune system that are still deficient that IVIG does not treat. It is not a cure all!
Back to the issue of testing for the approval of IVIG. There are many anti-vaccine believers on this board, I no longer share what I believe in or have experienced anymore (if you notice, because, well, I've been bashed in the past). I just can't keep quiet about this though. Saying that if people took the Prevnar, Hib, or Pneumovax vaccines and they did not get an adequate immune response that they would then "obviously, have pneumonia".
Maybe I misinterpreted what Jordana meant to say. The Prevnar, Hib, and Pneumovax vaccines are not "live" therefore they have no potential to cause infection in even the most vulnerable individuals.
Also, it will be very difficult to get approved for IVIG based on a Subclass Deficiency without a full lab work-up. Insurance co's usually want to see that other interventions have failed. That the patient continues suffering with pneumonias, sinusitis, viral infections, ... recurrent and severe infections.
Here's the info from the Immune Deficiency website, PrimaryImmune.org on Subclass Deficiencies:
Of course, you should always follow your doctor's recommendation's for diagnosis and authorization for IVIG. They know best what YOUR insurance co requires. They are the ones that have to fill out forms, write letters, do phone appeals, doctor to doctor appeals... basically beg and plead for you to get what you need!
Good luck friends, I hope that you get accurately diagnosed and are able to obtain the right treatment if needed. Posted by Jordana (Member # 45305) on :
sammy, I was being kind of smart-alecky in my statement that getting a pneumo vaccine will give you pneumonia. However the response the body would normally make to the pneumonia vaccine is to all intents and purposes "pneumonia."
If you can't mount an appropriate immune response,then it's pretty likely the thing will make you sick. Are you saying that a vaccine challenge in an immunocompromised person will have no effect on that person?
Posted by susank (Member # 22150) on :
Interesting - I was contemplating if those that had no reactions could be those that do not respond. Vs. those that do respond and make antibodies - making them feel cra**y.
Posted by susank (Member # 22150) on :
Sammy - you have done extensive testing that I have not.
It was never pushed that I be tested like you have been. It was suggested by my new immuno that to get a better picture of my immune deficiency I could go to Texas Children's Hospital.
I am so tired of doctors and tests - I just don't see the point.
Sammy - from all your tests - did you/your doctor discover anything helpful/necessary to know about your immune system? Would that change your treatment plan?
The only thing I'd like to know is if I've had an immune deficiency from birth. Can a test show that?
I did not start having serious respiratory infections until around the time Lyme disease was suspected.
That goes to the chicken and egg thing. Did Lyme and Co's. cause my low immunoglobulins? Or did Lyme hit me harder because I had a previously unknown immune deficiency?
Sammy - pre Lyme and CVID DX - did you have numerous serious infections?
Posted by sammy (Member # 13952) on :
SusanK, I'll come back later to answer your questions later as I that will take more time.
Jordana, most people with Primary Immune Deficiencies will not have a response to the vaccine. (There are hundreds of named disorders though. All have slight differences in how the body is impacted so it is possible to have a more rare type that does typically react.)
What people think of as side effects or the "flu" when they get the flu shot is truly a healthy person's immune response as the body builds antibodies against the vaccine. So healthy people can experience fevers, body aches, joint and muscle pains, headaches, fluey symptoms in general, etc... These symptoms are a good sign! You immune system is working hard to protect you, just as it should be!
When people with Primary Immune Deficiency do not get these symptoms after vaccination its because the immune system is unable to effectively build the necessary response. (They can possibly get a temporarily slightly sore arm where the shot was given as that was a minor trauma to the arm.)
Pretty interesting, right?
Disclaimer, some healthy people tolerate vaccines really well and do not notice symptoms of the immune system working. This does not mean that they have an immune deficiency. Remember, you can't suspect an illness or disorder based on just one symptom, always look at the whole picture.
[ 02-01-2016, 09:42 PM: Message edited by: sammy ]
Posted by cottonbrain (Member # 13769) on :
One more thing I did not see addressed above:
'Me', there are over 200 types of Primary Immune Deficiencies. Not all types benefit from IVIg. Many do.
In my instance, I make adequate (just slightly low) Ig. However, I produced only a few responses to the pneumonia vaccine, and after a couple months, I produced zero. This is called Specific Antibody Deficiency, and the *only* way to detect it is to take the vaccine challenge.
It is too early for me to tell if I am benefitting from the infusions, or whether the infusions will help me with Lyme. But I feel better knowing that I am less likely to contract pneumonia (with help from the Ig, not from the vaccine)
editing to add: two LLMD's encouraged me to do the infusions; both think it will help with Lyme recovery.
Posted by cottonbrain (Member # 13769) on :
I think it is possible to still get sick symptoms from the vaccine, depending on your type of Immune Deficiency.
For more info, the Immune Deficiency Foundation offers a free book -- I have found it very helpful.
True cottonbrain, you could respond to the vaccine challenge and still end up having an immune deficiency. As you said, there are hundreds of known and named primary immune deficiencies. They can each impact the body in slightly different ways.
For the purpose of this thread, it seemed like everyone was primarily concerned about Subclass deficiencies and or CVID. That is what all of my info & responses were/ are based on.
It would be very difficult to discuss specifics about the unique aspects of diagnostics and treatment possibilities of the hundreds of known named primary immune deficiencies. That is also not the purpose of this thread.
I have personal knowledge and experience living, coping, dealing, & suffering with CVID. So I'm just trying to share what I've learned & hope to help others here who are just starting on their journey.
I don't mean to muddy the waters for anyone so I do appoligize if that has happened.
As I have said many times over in this thread, you need a team of doctors that you can trust. One an LLMD & a Clinical Immunologist.
They will work together to provide for you the best quality of care available. You need people to trust so that you don't have to second guess or have feelings of doubt or discomfort when they prescribe anything including tests (including the vaccine challenge if they feel the need it).
Do your best to follow what your chosen team of doctor has prescribed for you. That will your best way to see long lasting improvements.
Hopefully one day, you will move on and not need your LLMD any longer as you reach remission from Lyme. If you have a Primary Immune Deficiency, then you will need your Clinical Immunologist for life. So it is worth while to get established with a truly excellent physician.
Posted by me (Member # 45475) on :
Wow. I have no idea what to do. This is so complicated, just like everything is with this mess. This is all such great input. I'm just at an impasse. Aaagh!
Posted by WPinVA (Member # 33581) on :
I'm in the same boat, me. In addition to being unsure about the Prevnar vax, I'm also a little intimidated by the IVIG itself given that it's a donor product.
I think I might try to work some more on detox first and then see where I am.
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