posted
I took IV Remicade for years for Psoriatic Arthritis, negative for skin Psoriasis. I took it along with Methotrexate, a low-dose chemo, which caused hair thinning, mouth ulcers, fever blisters, etc. It lowers your immunity to almost nothing. Infusions are lengthy and expensive but my real issue, they helped me very little.
Over time my diagnosis changed from Lupus to Psoriatic Arthritis to sero-NEG RA along with Ankylosing Spondylitis of the spine.
The past 2 years I've been on 2 injections per week of Enbrel. Continued having severe pain, joint deterioation, and terrible flares. I knew I had something more serious so I sought a LLMD. He sent my blood test to Igenex and it came back chronic Lyme.
My local doctor said "no Lyme in Texas". He shuffled me to an Infectious Disease doctor, an LPC, and Psychiatrist to tell me how crazy I was. Only the LLMD believed me and told me I was his typical patient.
Surely your sister has opinion as to whether the IV she's on is helping. If it is not, would she be open to seeing a LLMD?
I suffered for 9 long years before my diagnosis of Lyme and even longer finding a medical doctor that would believe in me and work with my LLMD. I hope your sister doesn't travel that road.
Posts: 245 | From Texas | Registered: Jul 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
she is physically exhausted. she cries a lot, in tremendous pain. talks of suicide. loosing her hair, says she hurts all over so bad she can't move. just lays in bed and cries. even vicodin won't touch the pain. she's loosing weight.
i think she's on her second month of iv's.
i'm so worried because i KNOW it's lyme. but her and those idiots she's seeing won't even consider lyme. she's taking that methodtrexate, plus iv infusion and even gold treatments, whatever the heckk those are.
they just keep dumping more stuff on her.
not one thing for yeast and i happen to know she drinks quarts of mountain dew a day. waayyy too much sugar.
i just wish somebody would listen.
she's going downhill fast....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Maybe ladyjenie can help you there (to convince her). Perhaps she could send her an email.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
thanks for all the help, but like i've said they think i'm crazy and "imaginary illnesses" to quote her are just an excuse to complain.
she believes every single word an md says because they have the paper to prove their "gods" and somebody like uneducated (at least in the medical profession) are totally uninformed and clueless.
i've mentioned lyme many times and just get told off.
it's just discouraging. i've begged, pleaded, cried and just done about everything i can but nobody will listen.
i've bought supplements like buhners, olive leaf, etc., and tried to get her to take them. she wouldn't....
unless it comes from a "god" i'm being shut out.
well, all i can say, is the next funeral will be hers. i'm positive lyme claimed my mother and now it will get my sister.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Randibear, I used a rheumatologist in DAL for 10 years that was rated by his peers as the #1 rheumy in DAL, several times. He was a great diagnostician. When I mentioned Lyme he said many doctors sent their Lyme patients to him for treatment.
He used the ELISA test and if it was NEG (surely NEG if chronic Lyme) he said there was no LYME present. It was his word and he looked at me like I was crazy when I asked him why then was I still so ill after taking Remicade infusions and Enbrel injections w/o any improvement. His reply, "That's the nature of your disease", period.
I couldn't help but wonder if he didn't see my point. I should have gotten rid of him long ago.
I have a new rheumy that is very interested in the words that come from my mouth. He told me he doesn't treat Lyme and doesn't know anything about Morgellon's but wanted to help me by getting me off the biologics that lowers my immune system and putting me on Plaquenil. I have had good results with Plaquenil.
I am now cooking and cleaning and driving to my doctor appointments, no longer paying for a driver because I was impaired by fatigue, pain, and brain fog. I do have some days when the Lyme flares but usually only a day or two, not a week.
I would be glad to talk with your sister in person or by email if she's open to it. I have leaned on people and have been so grateful for their help. Several check in on me every few days and my new friends have been the inspiration that turned my life around.
Let me know if I can help.
Lady
Posts: 245 | From Texas | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
The horrible pain sounds like RSD. Maybe she would listen to a child like Jessica.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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My pain is horrible although I wear a Fentanyl pain patch. My rheumatologist did a radio-active dye test and said every joint in my body was lit up like a Christmas tree. My ANA, C-Reactive Protein, and another inflammatory marker (can't remember the name just now???) have been highly elevated for years. That's why I'm taking 2 injections of Enbrel per week along with Plaquenil and a ton of other meds. I'm not at peak on the Plaquenil yet but will be soon. I think it is helping already at 6 weeks.
My daughter's hands are really changing and she has immense pain as well. I have begged her to try Enbrel, Remicade, or Plaquenil but so far she hasn't seen a rheumatologist. I told her that waiting is only going to cause more joint destruction. She is afraid of taking biologics but I told her I had to make a decision whether I wanted quality or quantity of life. I opted for quality, of course. Biologics lower the immune system so I'm always careful to avoid pharmacies, hospitals, doctor's offices, etc.. w/o wearing a mask. I look stupid but who cares.
I know most will agree that there are pills for pain, pills for neuropathy, etc., but not one thing for the suffering. It's difficult to explain how we feel to others because they can't visibly see our affliction. Maybe someday we can all get to a state of wellness.
Lady
Posts: 245 | From Texas | Registered: Jul 2009
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