New Here chronic neuro lymes, CIDP, Bartonella
-
-
March 7, 2007 at 1:29 pm
Wanted to say hello to everyone on this forum and applaud each person on here for sharing, helping and taking repsonsibility for thier or a loved ones life situation.
I am in Chicago and been battling doctors across continents now for over 2.5 years and finally last august was under the care of one of the leading doctors taking on chronic neuro lymes and its coinfections, she is Nj and I was on ivy antibiotics since august of last year. I had met all diagnostic criteria for CIDP in march of 06 but i guess it was not put togther until mid jan when I was forst introduced to the term. From Aug throgh october I got better with the ivy meds but end of october through early jan my condition deteriorated rapidly. I visited my doc in NJ and she too diagnosed me with CIDP end of jan and said I need a neuro work up.
I am back in chicago without insurance accessing health care at the county hospital or the local free clinic and trying very hard to be seen by the neurology team at mayo clinic. I’m 38 and my family has taken on the enormous burden of paying for my health are and living. I have applied for SSI/SSD and medicaid. I have hired a lawyer for my SSD. I have been waiting for my neurology appointment at cook county since last october it comes up march 22nd. I am not entirely without help but what I need most is a good neurologist in chicago that can see me ASAP or get intpo the mayo system for charity care.
I am willing to travel for the sake of my health and a neurologist that is compassionate and understands the effects of chronic neuro lymes and coinfections as well as CIDP. In addition I have an active deep recurring fistula, enlarged prostrated, endocrine issues, lymphadopathy, CFS/FM severe nerve related sensitivities the list goes on.
I am taking 3300 mg neurontin, provigil, cymbalta, zanaflex, belladonna, klonopin, cipro, mino, omega 3, l carnatine, coq10, acidophilous.
I need to add more medications to help with the CFS/Fm which are d-ribose, gluathine, lyphoic acid, b12, b1 and mitochondria ignite.
i cannot take any pain killers that have codine becuase of my GI complications and complete numbness in bowels and pelvis. I also have urinary retnetion and bowel continence issues.
Any guidance on how to get the local athorities to help me get access to care would be greatly appreciated by me.
In march of 2006 I had a EMG that showed extensive peripheral neuropathis and sensory neuropathies, absent or prolonged f respnses. Further my CSF showed elevated levels of albumin and a quantitative immunoglobulin protein electrophorosis shoed polyclonal gamopathy and I had a positive lymes elisa. At the time with this and additional evidence of degenartive process active in my bowels urinary system and prostrate i was told I was fit not a thing wrong with me and that my symptoms were somatic. One year later I am now being told I have CIDP. I have accepted my dx and moved past the anger and frustration. I am here for practical advice on how reasonable an expectation or how I should go about getting myself health care here in the united states.
I hope the universe/god/consciousness helps everyone suffering to receive what they need most at the time they truly need it. If there is anything i have learnt is that we may never get what we want but we always get what we need and imperfection can be perfect if make a choice to accept and transcend.
My best to everyone !
Gopal Vazir
Chicago, IL -
March 7, 2007 at 1:58 pm
Hi Gopar,
Welcome to the forum family. I am sorry to hear about all of your medical problems. Many of us here have struggled to get a diagnosis too, and it’s not uncommon to be misdiagnosed. It is especially frustrating to be told that “it’s all in your head”. 2-1/2 years is a long time when you don’t have answers.
I don’t have any suggestions about how to get free health care here in the United States. As you may be aware, it isn’t actually free. The taxpayers of the United States pay for it. The system is already over-burdened with so many poor people needing care, that the care that can be provided is usually minimal, and involves long waiting times.
The system is not designed to provide highly specialized care, since such care is so costly. If you want to be seen at the Mayo Clinic, your best bet is to have your family pay for it.
Meanwhile, I hope you can find information on this site to help you manage your CIDP.
Suzanne
-
March 7, 2007 at 2:39 pm
Please be aware that most doctors don’t accept Medicaid because of the extremely low payments they receive from the government. Are you an American citizen and have you paid in the Social Security system? If not then you will undoubtably be turned down. The only reason I ask is that you say you have battled this across continents for 2 1/2 years now.
Make sure once you get Medicaid that when calling for an appointment to ask first if they accept Medicaid.
Also call Mayo and ask if they have a Charity Care program and if you fit their criteria for Charity Care.
Wishing you the best.
-
March 7, 2007 at 4:10 pm
🙂 🙂 Just to make it clear I lived in the united states since the age of 18 been a taxpayer paying between 35k and 40k a year in taxes and FICA and SS since 1998. I am single no home no children no deductions straight direct taxes. Once I was unable to work I used my 401k my IRA’s and all my savings as I was working at one time upto 16 hours a day for 2 years straight for one of the highest ranked etailers in the nation at the time. I am US citizen. I was paying out of pocket 350 a month for the mega health and life insurance plan. When I was out of my savings and unable to find a rental without signing a lease i moved into the YMCA that is where I was reinfected with bartonella a flea bourne infection also known to cause CIDP.
I was chief technology officer and listed on the forbes 100 officers of the web and had and have equipment (technology related) that got infested with fleas when I moved from the Y to an extended stay hotel. I further harmed myself by bombing all of these expensive equipment with very strong pesticides both in my hotel room and my car. I had no idea at the time my health had neurological problems or the effects of these toxins on my health. By jan 2006 my family was here to take me to India for further treatment. this is when my neuro symptoms were acute and for 5 months and 3 hospitalizations there I was diagnosed with a mild infection of borrelia burgdoferri (lyme’s).
This is when i went in for alternative care and it helped me rejuvanate trmendously and it led me to an introduction to Lyme’s specialist in NJ who had me do a series of additional blood work and a spect scan of my brain. this was when I had begun to lose my ability to speak. This scan showed diffused vasculitis andd hyerperfusion in all areas of the brain the frontal and temporal lobes and the upper left cerebeller regions being the most effected. I flew back t the united states with a sed rate well over 100 and to find my car was repossessed my health insurance cancelled as a result of a miscalculation (lyme’s related brain fog) in the amount of maoney I had left in my account to allow for the auto debits to continue.
I have paid out of pocket for my lyme’s specialist and any testing she did for me upon my return here and any post visit.
I have seen several posts on this site where individuals have found local resources to help them out in expediating access to care as well as even getting access ot IVIG without cost to them. I am a US citizen and always paid my taxes on time hence taken the steps to apply for disability etc.
I am told it is approximately 10k a dose my doc has told me i require two doses a week for 6 months for IVIGg. The cost of this is 2k a dose in India dropping the cost down to 50k for 6 months which is still a substantial cost.
I cannot travel back until my disability claim is finalized hence I am using this time to find creative ways to avail treatment here. if for any reason my claim is going to drag on for an indefinite period of time I will opt to seek treatment In India or possibly Denmark where a study is being conducted for individuals with CIDP and the cost for treatment and diagnostics may be a non issue if I qualify as a candidate for the study.
I hope this clarifies the point that I am trying to see my own tax dollars put to work.
Cheers,
Gopal
-
March 7, 2007 at 4:34 pm
my post will clarify my immigration status, I am working with the mayo charity care system I still need to find a stron referal for the system. I have the 800 number for the charity care from Mayo and in the process of approaching the doctors who I have been seeing over the last several months to help me out with this.
I was told by mayo neurology that I am looking at mid summer before I get an appointment there. if they deem my case urgent i am still looking at a minimum of 8 weeks.
I have applied for medicaid and my doctors have sent in all my information. U of C in chicago does accept medicaid and there is a Dr. Betty Soliven who specializes in neuro muscular disorders and currently doing research on CIDP with animals. I previously had an appointment for march 6th with her but since my medicaid is pending they did not let me keep my appointment. I offered to pay all of her charges upfront but U of C does not accept self pay. Madicaid told me any expense incurred by me since october of 2006 could be reimbursed through their system hence It would be ideal for me to get atleast my diagnostocs done here in chicago. I belive the tests needed is a skin biopsy for my nerves, a full body PET scan, A tilt table test and possibly other updated blood work and new EMG possibly also a monitored EEG over extended period of time.
This entire work up can cost me 6000 dollars if i have it done from NYU in NYC this is an option I am considering as well. With the cost of medications that i am paying for without insurance cost of living cost of travel and no source of income it has become a financial burden.
I empathize with the everyone as my story is no different than anyone else in terms of a diagnosis, I just want to make sure that I get in the hands of somebody who knows what he is doing not inthe hands of another neurologist who is going to tell me my issues are psychosomatic.
I am hoping that through this forum I may be able to get references to doctors and resources in chicago or near here that may help me make the right decisions. At this time I am so confused as to what to do should i forget about SSD and return to India? should I stay and get it finished? if I am delaying my treatment by staying is that wise? should I do the diagnostics here pay the cost and then leave? i read on this forum that venezuela offers IVIG treatment at 500 USD a dose is that option i should look into?
It helps to read about how individuals expediated their disability claims and also got creative in how they received treatment in light of difficult circumstances.
Cheers,
Gopal
-
March 7, 2007 at 5:08 pm
Hi Gopal,
I am hoping that you get the medical care you deserve. Hopefully being you paid into the system in the U.S. you will be able to get Medicaid or Medicare. IVIG is so expensive
NYU is a great hospital, but no mater where you are, I hope you get your IVIG very soon.
Sorry for all the questions, but we tend to ask them when all of us here are trying to figure out how to help in any way we can. We don’t sugar coat the truth as the truth need be told on all aspects of this crappy illness.
Take care of yourself 🙂
-
March 7, 2007 at 5:16 pm
I just got of the phone with my case worker and they deemed me not disabled so my case worker has sent in more documentation to support my case if i get denied again I will then have a chance to appeal.
thanks for your good wishes i sure can use them 🙂 as byron katie would say from [url]www.the[/url] work.org it’s best to accept reality the way it is. I am sure a door somewhere might open up and even if it doesn’t I still have my smile 🙂
-
March 7, 2007 at 9:30 pm
Gopal,
Thanks for clarifying your situation. You certainly have had more than your share of bad luck, in addition to your health problems.
We have several members on this forum who are in the Chicago area. Perhaps one of them can give you the name of a good neurologist in that area.
I believe that some of the pharmaceutical companies have provisions to help people who can’t afford their medications. I’m sorry I don’t know the specifics on this, but someone here should be able to tell you who to contact.
I do understand why you want to be seen by someone familiar with CIDP, so you don’t get dismissed without treatment, or get the wrong treatment.
Your attitude is great, and that will help you no matter what happens. I do hope you will get treatment soon.
Best wishes,
Suzanne
-
March 8, 2007 at 1:46 pm
thank you so much suzzane I can use all the good wishes. I have sent out emails to my docs lawyer and personally going to get some additional paperwork submitted hopefully they will do the needful. I am hoping the doctors call the mayo 800 charity care refral service and plead my case and also present a strong case on my behalf for SSA. I am already so tired my doc has suggested some amazing meds for CFS I still need to get to ordering those supplements. She attended the IACFS 2007 conference and has given some amazing recommendation to all her patients who have neuro lymes or coinfections and as a result suffer bitterly from CFS or FM I’ll post more on her recommendations later but thanks for your support.
Cheers,
Gopal:)
-
March 8, 2007 at 4:44 pm
IVIG may be very beneficial to you. After all the antibiotics your Lyme is probably not active, but the autoimmune mechanism created by the Lyme (thus creating your CIDP) is.
IVIG may be very beneficial for that. You may be able to find programs that do IVIG donations. Look on the main page of cidpusa.org as I believe some relevant info may be found there.
If IVIG is not available cortocosteroids may be as effective and certainly much cheaper, but they have a higher side effect profile.
A good neuro workup is extremely important. I know of no one in Chicago but Rush hospital would be my best bet – [url]http://www.rush.edu/[/url]. A doctor may there may be able to admit you as a patient and get you the meds you need without prior insurance (you’ll have to deal with the bills later).
In CIDP steroid and IVIG are first line treatments so I would focus on getting a neuro exam and taking that route for now (though considering your elevated sed rate and vasculitis, plasma exchange sounds more apt).
Be careful with the cymbalta, provigil, neurontin and klonopin as those drugs can cause many side effects and also have interaction problems. If those drugs are not being helpful ceasing the m(one at a time) may be beneficial.
Best of luck.
-
March 8, 2007 at 4:49 pm
After all the antibiotics your Lyme is probably not active, but the autoimmune mechanism created by the Lyme (thus creating your CIDP) is. A positive ELISA is not unequivocal for Lyme infection but it is indicative, especially when drawn by spinal fluid rather than blood. The weight of the diagnosis is usually on the Western Blot.
You may be able to find programs that do IVIG donations. Look on the main page of cidpusa.org as I believe some relevant info may be found there.
If IVIG is not available cortocosteroids may be as effective and certainly much cheaper, but they have a higher side effect profile.
A good neuro workup is extremely important. I know of no one in Chicago but Rush hospital would be my best bet – [url]www.rush.edu/[/url]. A doctor there may be able to admit you as an in-patient and get you the meds you need without prior insurance (you’ll have to deal with the bills later).
In CIDP steroid and IVIG are first line treatments so I would focus on getting a neuro exam and taking that route for now (though considering your elevated sed rate and vasculitis, plasma exchange sounds more apt).
Be careful with the cymbalta, provigil, neurontin and klonopin as those drugs can cause many side effects and also have interaction problems. If those drugs are not being helpful ceasing them (one at a time) may be beneficial.
Best of luck.
[QUOTE=gvazir]Wanted to say hello to everyone on this forum and applaud each person on here for sharing, helping and taking repsonsibility for thier or a loved ones life situation.
I am in Chicago and been battling doctors across continents now for over 2.5 years and finally last august was under the care of one of the leading doctors taking on chronic neuro lymes and its coinfections, she is Nj and I was on ivy antibiotics since august of last year. I had met all diagnostic criteria for CIDP in march of 06 but i guess it was not put togther until mid jan when I was forst introduced to the term. From Aug throgh october I got better with the ivy meds but end of october through early jan my condition deteriorated rapidly. I visited my doc in NJ and she too diagnosed me with CIDP end of jan and said I need a neuro work up.
I am back in chicago without insurance accessing health care at the county hospital or the local free clinic and trying very hard to be seen by the neurology team at mayo clinic. I’m 38 and my family has taken on the enormous burden of paying for my health are and living. I have applied for SSI/SSD and medicaid. I have hired a lawyer for my SSD. I have been waiting for my neurology appointment at cook county since last october it comes up march 22nd. I am not entirely without help but what I need most is a good neurologist in chicago that can see me ASAP or get intpo the mayo system for charity care.
I am willing to travel for the sake of my health and a neurologist that is compassionate and understands the effects of chronic neuro lymes and coinfections as well as CIDP. In addition I have an active deep recurring fistula, enlarged prostrated, endocrine issues, lymphadopathy, CFS/FM severe nerve related sensitivities the list goes on.
I am taking 3300 mg neurontin, provigil, cymbalta, zanaflex, belladonna, klonopin, cipro, mino, omega 3, l carnatine, coq10, acidophilous.
I need to add more medications to help with the CFS/Fm which are d-ribose, gluathine, lyphoic acid, b12, b1 and mitochondria ignite.
i cannot take any pain killers that have codine becuase of my GI complications and complete numbness in bowels and pelvis. I also have urinary retnetion and bowel continence issues.
Any guidance on how to get the local athorities to help me get access to care would be greatly appreciated by me.
In march of 2006 I had a EMG that showed extensive peripheral neuropathis and sensory neuropathies, absent or prolonged f respnses. Further my CSF showed elevated levels of albumin and a quantitative immunoglobulin protein electrophorosis shoed polyclonal gamopathy and I had a positive lymes elisa. At the time with this and additional evidence of degenartive process active in my bowels urinary system and prostrate i was told I was fit not a thing wrong with me and that my symptoms were somatic. One year later I am now being told I have CIDP. I have accepted my dx and moved past the anger and frustration. I am here for practical advice on how reasonable an expectation or how I should go about getting myself health care here in the united states.
I hope the universe/god/consciousness helps everyone suffering to receive what they need most at the time they truly need it. If there is anything i have learnt is that we may never get what we want but we always get what we need and imperfection can be perfect if make a choice to accept and transcend.
My best to everyone !
Gopal Vazir
Chicago, IL[/QUOTE] -
March 11, 2007 at 8:40 pm
Wow Gozal, I can’t imagina how you even function on all those meds. I am taking a fraction of those because I couldn’t do anything on all that stuff. I’d forget my name.
Continue your diligence I have high hopes that it will be rewarded.
-
