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Old 05-17-2006, 05:20 PM   #1
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Part 1: Letter to representative Gomes

Dear Rep. Gomes,
Thank you for your efforts in raising awareness about Lyme disease ,and treatment(or lack thereof).I would like to share with you my ordeal with Lyme.
In 2002,I awoke with a temperature of 104,stiff neck, throbbing thigh muscles, and severe headache. I went to my primary doctor. My primary thought that it was probably Lime disease, took a blood test, and gave me 10 days of Doxycycline 100mg 2x Dailey. My doctor told me that the test would probably be negative ,but if it was indeed Lyme,the Doxy would kill it. After about 3 days I felt much better. After the 10 days I was back to my old self. I went back to the doctor after a month and requested another blood test, as I needed to know what that horrible illness was. The test came back positive for Lyme.
In 2003,I pulled a tick off of my forearm. I noticed a rash developing around the bite. I went to see my primary, who gave me 10 days of Doxy again. After 3 days the doctor called me and told me that the Lyme test was negative, and that I probably just had a allergic reaction to the bite. I stopped talking the Doxy because it causes extreme sun sensitivity, and it was Summer.
In 2004,I noticed that I had shin pain when I took my Dailey walk at the canal. I thought that it might be shin splints. I started having neck and knee pain shortly after that. I went to my primary, who told me that I was getting old and that I have nothing serious to be worried about, all bloodwork was negative. I was 40 at the time.
By the first of 2005,I was having extreme muscle cramps in my legs that reminded me of the pain I endured when I had Lyme.I could actually see the muscles on my thighs moving and twisting. I also experienced muscle twitching all over my body. I now had neck, shoulder and knee pain, muscle cramps, and twitching. I went back to my primary and told him that my symptoms were getting worse. He sent me to a rhuematologist.
I saw the rhuematologist in April of 2005.He diagnose me with Fibromyalgia.He explained that it is a disease that has no specific cause, and causes pain in the muscles and joints. He gave me a prescription for an antidepressant (Zoloft)and told me that it would raise my serotonin levels so that I wouldn’t feel the pain so much. I never took the Zoloft, and figured I’d just have to go on with my life, and research this myself. All bloodwork for many diseases were negative.
By the early summer of 2005,I noticed that the nerve under my right eye was pulsating 24 hours a day. This was not like an eye twitch that everyone has now and then, but a constant throbbing nerve. By now, I had been on many message boards reading about Fibromyalgia.Many people on the board later found that their Fibro was actually Lyme.I went over to the Lyme board. I couldn’t believe it when I read many posts from people talking about the muscle cramps,twitching,and even the mysterious throbbing eye nerve!!!I was thrilled to think that this is very likely Lyme and that there is a cure for this!!
I found some Doxycycline in my medicine cabinet and took it for a week. I noticed that the neck and knee pain went away. I went to my primary and told him about how I was getting better with the Dixieland showed him my throbbing eye nerve. He gave me 3 weeks of Doxy,and told me’’ THAT”S IT! There is no proof that anything longer than 3 weeks is effective in killing lyme”He suggested that I either see an eye doctor or neurologist for the eye twitch.
After 4 weeks of the Doxycycline,the throbbing eye nerve went away! I knew now that this illness was indeed bacterial. I also knew now that this was Lyme and I am now experiencing the horror of many other lyme patients trying to get treatment, chasing symptoms. I knew that if I could just stay on the Doxy,that I could eliminate the throbbing pain and twitching of my muscles, as it was lessening. I also knew that my doctor was NOT going to give me anymore Doxy.I desperately tried to obtain Doxy.It was so frightening to know that I was sick and no Doctor would help me! My primary even suggested that the throbbing eye nerve was psychosomatic!
I talked to someone from a Lyme support group about my ordeal. The woman I talked to told me her story of chasing symptoms, negative bloodwork,the Fibro diagnosis, and finally an MS diagnosis. This woman was actually in a wheelchair for many years before discovering that her “MS” was actually Lyme!She is now leading a fairly normal life, with some residual nerve damage and neurological symptoms.
The woman told me that I was pretty much on my own ,and to try to obtain antibiotics wherever I could get it. I told a veterinarian my story and he couldn’t believe that no doctor would give me more Doxy,as they treat dogs with Lyme for many months! I had an appointment with the only knowledgeable Lyme doctor in 4 months. The vet gave me enough to get to the Lyme doctor. I continued to slowly get better.
I met a customer at work and told him my story of the muscle aches,pain,twitching and brain fog. He knew right away that this was Lyme! His wife was also in a wheelchair misdiagnosed with MS that turned out to be Lyme. She is now flying to New York every couple of months for IV therapy, and is slowly getting better. He warned me not to go see a neurologist .He told me that Lyme and MS leave the same lesions on the brain, and most neurologists don’t recognize it. He told me that they will probably tell me that I have MS and then taken down a long, dark road of therapy and drugs that I will not recover from!!

 
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Old 05-17-2006, 05:44 PM   #2
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Re: Part 1: Letter to representative Gomes

Hi mesmail
welcome to the forum, you will find comfort here and support, its somewhere you dont have to pretend you are well, and you can be you.

Ive read part 1, will wait for part 2 to be put in.

However I will be surprised if many on here manage to read all through it as Lyme relay gets in teh eyes and holds you back form using monitors and reading compacted sentences.
But it does sound like you have been down the road most of us have. Its heart breaking and no less than insulting as a human being.

I look forward to part 2.
jules xx

 
Old 05-18-2006, 08:04 AM   #3
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Re: Part 1: Letter to representative Gomes

Hi Mesmall!
Great letter--where is part 2? I saw where it was deleted, so post it on this thread instead. I'd love to hear the rest.

Hope you are feeling okay.
Lymesgal

 
Old 05-18-2006, 08:32 AM   #4
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Re: Part 1: Letter to representative Gomes

The rest will have to be posted as a reply to Part 1.My son will have to do it later,because it was removed.Maybe I should have posted it under the "attention Lyme victims from Mass." as a reply,then again as a reply because it's too long for 1 post.On paper, it's actually 2 pages.I wonder if they'll edit it as a repost if I do it that way???I'm sure it's too long for most people to bother reading,so maybe the Mass.people should have it there. I talked to Rep.Gomes and she said that the reporter who was so interested in our story suddenly disappeared after the Cape Cod Times wrote an editorial against her bill.Their stand is to "let the Dr.'s decide the treatment,not some bill" It's so ironic because the bill is needed because Dr.'s are NOT treating it!!DUH!

Mesmall

 
Old 05-18-2006, 08:46 AM   #5
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Re: Part 1: Letter to representative Gomes

Hi Mesmal...GREAT LETTER...Am bummed that the other part was deleted...Can you ask the moderator if you can post it? We're all hanging in suspense...

Have a wonderful day...


 
Old 05-18-2006, 09:23 AM   #6
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Re: Part 1: Letter to representative Gomes

It's not a bother reading! We want to read it.

 
Old 05-18-2006, 10:05 AM   #7
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Re: Part 1: Letter to representative Gomes

Hello, It was great to read your letter. I am a mother of two girls. My oldest is six and she was diagnosed almost three and a half years ago with lyme and about 2 years ago with Babesia. Her pediatrician diagnosed her at first and treated her with amoxocillin. The symptoms continued and every Dr. I took her to said that it had nothing to do with Lyme. I was not to sure of that so I found a ped. Lyme specialist in Conn. Her Dr. would not give me a referral so we had to pay alot of money out of our pocket. Make a long story short she was treated for an entire year with zithromax and mepron. She still to this day has all of the symptoms. Her fevers reach almost 105 and now her Dr. is telling me that it is Pfapa. I don't buy it but I don't know what to do about it. Any suggestions?

 
Old 05-18-2006, 10:37 AM   #8
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Re: Part 1: Letter to representative Gomes

Hi Tina, welcome!
So sorry to hear about your daughter, that must be so hard. I hope she is having a good day today.
Does it happen all the time or in cycles? After I read your email I looked up Pfapa, since I have never heard of it. It sounds so much like lyme disease, seems it would be hard to tell them apart. Maybe your lyme dr. could try another protocol, switching the antibiotics to something else? My doctor has me on Biaxin and hydroxychlor (same as phenquinil) combo. and I've heard alot of people have gotten better and some cured. Maybe you should get another opinion from a different doctor? Is your current doctor lyme literate? I know alot of them say they treat lyme but I have found out that most of them aren't as educated as an actual lyme doctor.
I hope your daughter gets the help she needs soon. My heart goes out to her.
Lymesgal

 
Old 05-18-2006, 10:59 AM   #9
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Re: Part 1: Letter to representative Gomes

Quote:
Originally Posted by battling on
Hi mesmail

However I will be surprised if many on here manage to read all through it as Lyme relay gets in teh eyes and holds you back form using monitors and reading compacted sentences.
jules xx
Hiya Mesmail
Sorry if it sounded liek peeps wouldnt read it, i wrote that quiet late, i didnt mean to put you off, what it meant to say was to get lots of answers will take a while as we go throught the cycle of lyme so does teh ability to read on here.

i know all peeps on here will want to read it and we get fustrated when we cant.

please post the second part, you could contact a mod, they are strict but fair as they have to watch the band width, it all costs more money im sure.

please ask them see what they allow.

they may delete this one and let you do it gain.

We all need are storys out there we share so much.
xx jules xx

 
Old 05-18-2006, 02:10 PM   #10
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Re: Part 1: Letter to representative Gomes

My daughter is doing good today. The reason I don't think that is Pfapa is because the pain and fever on brought on by ANY bit of activity. She was on a gymnastics team at a young age and had to stop because of this illness. The Dr. we were seeing is very lyme literate but I think because he treated her for an entire year he has to unfortunately be careful of lawsuits coming from the " uneducated". It is very unfortunate but her primary Dr. was very laid back about the whole thing and now my daughter is suffering because of it. I am hoping someone will eventually do something to help her out. Do you still have alot of pain? What other symptoms do you still have, if any?

 
Old 05-18-2006, 06:10 PM   #11
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Re: Part 2: Letter to representative Gomes

I refused to see a neurologist as my doctor was insisting,but I went to an infectious disease doctor who ordered an MRI.This was October 2005.This infectious disease doctor also didn’t believe that I had lyme because of the negative test,or possibly from speaking with my primary.
My primary called me the next day to inform me that there was “something “on my brain stem and it looks like a tumor!This was a Friday,and I was to go to my local hospital on Monday to get a referral to Mass. General.My primary suggested that I come by the office to get some sedatives to get me through the weekend or for whatever lies ahead.The Neuro-oncologist called me to make sure that someone was with me for support and an extra set of ears to understand what I was to be told. I couldn’t believe that after chasing symptoms for a year,it had come to this!
I was told at the local hospital that my MRI showed a primary brain stem tumor,and that it’s in an area that no one would dare go.My husband and I were devastated.I was given an appointment to Mass.General two days later.
I saw a team of neuro-oncologists.They wern’t so willing to to declare me terminally ill.They reviewed my MRI and thought that it could be a tumor,or a lesion,or even something that’s been there since I was a baby.They all agreed that I had two different things going on. They thought that the twitching,aches,and pains were a central nervouse system infection of some sort,very likely Lyme.They said that the area of my brain where the”tumor” was located,affects breathing and heart(which is why they weren’t willing to biopsy),and does not affect muscle function. I endured a painful spinal tap to look for tumor cells.The test was negative.The test did show evidence of Lyme,but the doctors said that the test doesn’t tell whether I had it,still have it,or got it again,but they know that the Lyme is very tricky at detection . The team ordered me to go in an IV of antibiotics for 1 month.They sent the orders to my primary so that I could receive the therapy at home.My primary doctor tried to convince me that this was not necessary.He told me that the test was negative and that he took an oath to “Do no harm”,and that this therapy would violate that oath,.The team insisted that I get treatment,and made sure that I received it.They ordered another MRI in 2 months to see if the “lesion” was growing.I was so grateful to have a team of brilliant doctors finally believe, and treat me for Lyme.The brain tumor issue was just more anxiety that I endured for 2 more months through the holidays.
After a month of dailey IV injections at home,I finally got to the only Lyme Literate doctor in the area.This doctor explained that the throbbing eye nerve is very common in lyme patients because lyme attacks the nervous system,and that particular nerve is vunerable.All of my symptoms were consistant with Lyme.He prescribed a course of therapy of antibiotics that penetrate the cell wall of the bacteria and kill it.It can be a slow process,but I was assured that I would get better.I burst out crying.Finally,someone understands this and is going to treat me!I have been on this protocol for 4 months now and am getting remarkably better.The muscle cramps have subsided, the brain fog has ceased,and the aches and pains are occasional and short lived.The doctor explained that I’m not experiencing joint pain but nerve pain,and that’s why the Tylenol never worked.I’m now working 4 10 hour shifts at a very physical job and have my strenght back. Because I still have the twitching occasionally, I don’t feel ready to go off the antibiotics,because I believe the lyme will multiply, but I’m very close to being cured.
My next MRI showed the exact same picture. The doctors all agreed that I do not have a brain tumor,and that perhaps the right side of my brain is slightly larger than the left, but I don’t need to worry any longer about this.They ordered one more MRI in 3 months, just to be sure ,and wished me well in my lyme recovery.The next MRI was the same and the doctors told me I no longer need to come to the brain cancer unit any longer.
I am astounded at the amount of money my insurance company spent on me chasing symptoms of lyme,when all I needed was a simple course of antibiotics for several months or longer.The doctor refused to give me more than 3 weeks of Doxy because they believe long-term antibiotics are harmful.I was astounded again when I brought my teenage son to the dermatologist for acne and he prescribed Doxycycline 2xdailey for the rest of his teenage acne prone years!!!! I will never understand how insurance companies don’t want to pay for antibiotics, but will pay for all those doctors I saw, and 3 MRI’s chasing symptoms. The doxycycline that I bought off the vet cost me $38.00 for a 4 month supply without insurance! This is a complicated disease with a simple cure! To think that I had to resort to an underground network to get better is a crime! If I believed the misdiagnosis of fibromyalgia,I’m sure I would be much worse now,taking antidepressants,and thinking I was having a bad “Fibro” spell.
I know that there are hundreds of people with equally horrifying stories of knowing your sick,but no one believing you ,they were my support throughout this ordeal. I’m grateful that I am strong enough now and healthy enough to tell my story,and make a change to the system.Everybody wins,patient and insurance companies,when Lyme is propery diagnosed.There are so many different strains of lyme and co-infections now that there couldn’t possibly be a test to detect them all .Please work to help the many people like me that are going from doctor to doctor right now chasing symptoms,or worse,being treated for the wrong diagnosis because the test is negative.At the very least we must protect the few who are treating it properly,and insist that these other doctors learn everything about Lyme.My primary based his refusal to treat me on the CDC guidelines which say that longterm antibiotic are ineffective, even though I know hundreds that have been cured through proper therapy. My new primary says that the CDC changes their recommendations as they learn more and someday will probably change their theory on this issue.Until,then we must help to support the few who are treating and healing us.They are the true heroes that are upholding the vow to “DO NO HARM”.


,
Sincerely,
Mesmall

 
Old 05-18-2006, 06:26 PM   #12
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Re: Part 1: Letter to representative Gomes

Wow, Mesmall! Incredible letter - you said it all for all of us! Thank you!

 
Old 05-18-2006, 07:15 PM   #13
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Re: Part 1: Letter to representative Gomes

I agree. Great work Mesmall. I wish we could all sign our names to this. Marsha

 
Old 05-19-2006, 04:55 AM   #14
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Re: Part 1: Letter to representative Gomes

I wish that I could get my 2 parts of this letter together on the post.I really didn't think it through when I posted.Once part 2 was deleted,the story got separated.Oh well,guess I'm still not thinking clearly!! Thanks for your nice comments.Hopefully,I will get to read this sad tale when there is a hearing at the State House.Rep. Gomes told me that she has recieved some letters from a few on the message board,Thank you!!!People think that my story is outrageous,yet there are so,so many people with worse stories than mine!!I'm so grateful that mine will have a happy ending! Hey,you can't kill me twice!!!


Mesmall

 
Old 05-19-2006, 05:11 AM   #15
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Re: Part 1: Letter to representative Gomes

Mesmall you did and exceptional job!!!!!

 
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