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Old 07-12-2012, 08:49 AM   #1
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Is it ever too late to manage Lyme Disease

Hi,
I am new to this board and if I stray into forbidden territory, please, let me know.

More than 20 years ago I was diagnosed with Lyme after having seen 32 doctors to find a dx. I know it was 32 as I had to list them to apply for social security when I couldn't work. I was turned down for years; never was approved, never got it and couldn't work. I was too ill.

I believe I was dx in 1989 (I forget exact dates and threw all on my SS file away, in disgust) after becoming very ill in 1984 with what physicians thought was a stroke.

My symptoms started to get worse and I had problems with memory, felt as if I were in a fugue state all of the time, disconnected from everyone and everything and just plain so ill with intractable fatigue and pain, mental issues etc that death, at that time, would have been preferable.

After years of physicians telling me that I had severe panic disorder, that I needed a psychiatrist (by that time I'm sure I did), that I was an hysteric, that I had fibromyalgia, that I had bad nerves, that I was looking for attention/drugs I found a really nice rheumatologist who tested me for everything under the sun. I hadn't related my past doctor search to him as I wanted him to treat me as if I were just a patient coming in for a dx; not the crazy woman that every other doctor thought I was.

A week later he called and told me he had found that I suffered from Lyme and that my titer was off the charts. That excited him; I was his first lyme patient. I was also excited (how soon I realized how stupid that was) because I finally had a diagnosis. Little did I know what would happen after that.

This nice doctor put me on oral antibiotics as, I imagine, that was the protocol at that time for Lyme. When I came clean and told him how ill I had been and for how long he gave me IV Claferon for a month. I felt better and I was convinced that I was cured. Again...so wrong.

I went back to him and he said he felt I was cured but would agree to another course of ABX. I received Rocephin for a month. Again, I felt good.
Then, relapse, a big one, and when I went back to him he did more testing, told me that the tests were negative and that I was cured, no more abx necessary. When I became ill again (or when it reared its ugly head again) no amount of begging could get him to put me back on abx so I stopped the search and focused on getting SS and just laying back in hopes of this 'passing'. I felt sorry for myself, ate, ate and ate and gained so much weight. You must remember, in the 80's not much was known about lyme.

I lost friends because I would make appts and not be able to keep them. They thought, as the doctors did, that I needed mental help. My husband though, knew me well and believed that I was ill. We did research and found a physician who treated rheumatoid arthritis and believed it was triggered by Lyme or, actually, WAS Lyme. (I had just been dx with RA and couldn't walk) In the early years there was an outbreak of juvenile rheumatoid arthritis in Lyme, CT and it was later found NOT to be JVA, but Lyme Disease! So, we traveled to Ida Grove, Iowa from SC to see this great doc. I felt as if I were on a trip to Oz to find my brain. I was right!

Once there I had five courses of ABX, two times a day, 12 hours apart. I never felt better, I was able to walk out of the hospital and it was like a miracle. No more rheumatoid arthritis, no more lyme. The doctor put me on oral minocycaline every day and I felt good (not great, I had residual problems, but better) for a few years.

Enter my new physican who freaked when he saw that I was on minocycaline and he took me off of it, asap. Told me it would really hurt me in the long run, and, since I felt much better anyway, I complied. What a mistake. I went to this doctor, did what he asked faithfully and that was where I went wrong. I became so ill again that I couldn't function and the last straw was my sweet husband dx with cancer and told there was no cure. I needed to be well to take care of him and my doctor put me on steroids and the result was like a miracle. I could actually function, was in no pain and could take care of my husband the way he deserved.

I weighed 125 pounds when this all started. Today I weigh 205 pounds and am sick because of it and about weighing this much. But, I digress.....

I continued with steroids, took my husband on many cruises and trips everywhere. He passed away in the end of 2010 and I just fell apart. No longer did I have the support and caring of the one and only person who loved me and believed me, I also lost the ability to take care of myself as I became deeply depressed and morose. After being with someone over 30 years it's hard to get back to living.

Here I am today, 67 years old, feeling as if I am going to die at any time. (and sometimes not caring) I have had a heart attack (Dec 2011), have a right bundle branch block, 2 stents, RA, sick sinus syndrome, atrial fibrillation, Thalessemia minor, sleep apnea, hypertension, type 2 diabetes, protein in my urine (kidney problems), IBS, fatty liver and yes, I DO need a shrink. Even I'll agree to that now.

Now comes the good part. I have asked several doctors if they believe in chronic lyme. None that I asked do. I have had occasion to receive IV therapy (ex: Anceph) while an inpatient and, after a few doses, felt like I was 25 years old again. This has happened on more than one occasion and this last time, when I had C-Diff, I was on heavy duty abx, IV, and called in the physician to tell him how wonderful I felt and if he had any curiosity as to why, when I had ABX IV, I felt great, he just looked at me and said..."That's because we are getting rid of your infection." Seriously? He wouldn't even entertain the thought that the abx could be killing off spirochettes. (again, that crazy lady in 302)

My life, as I knew it, stopped when I was 47 years old. I was slim and trim and had fun. I loved to travel, work, wasn't afraid of anyone or anything. Today I am a shell of the woman I was, I am discouraged and a few times have paid thousands for ABX IV therapy (Script written by the doc in Iowa) as my insurance won't pay for it. I am now on Medicare and I am SURE they don't pay for that, though I haven't checked.

I am now in NJ going to every kind of doctor there is BUT, I do NOT have a LLMD and that's who I think I need. I'm not looking for a cure. I'm just looking to be able to function, to continue living alone, to just be a regular person.

Is there any LLMD who can help? I was going to a wonderful woman in Egg Harbor, NJ but that poor lady was put through torture by the medical community, the insurance companies, social security; everyone. I don't think she even does the treatments any more but I am unable to drive that far anyway.

Please forgive this novel and I promise never to post anything this long ever again. I just wanted you all to know my situation, how I felt, how I feel and maybe my post will cause some of you to question the doctors and trust your instincts. I wish I had. Thank you if you're still reading.

 
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Old 07-12-2012, 11:58 AM   #2
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Re: Is it ever too late to manage Lyme Disease

Hi Seacluded, my heart goes out to you. Nothing wrong in long post. I think this is such a good way to vent and release the humiliation and anger many of us feel.

My thoughts on ...Is it ever too late to manage Lyme Disease. I feel that with a lot of hard work we can get "better".
We have to find the right doctor to help along the journey and we have to do a LOT of reading and learning what works for each of us. We're all different in treating what we have.

I know you have been at this for a while. But you might want to read over 2 threads above. Lyme Newbies and How to share LLD names.
In my opinion it would do you good to seek out another LLMD.
If you can't drive, possibly a taxi

You sound like a very strong person. Maybe a Lyme support group in your area would be a good way to meet others in person. (just a thought)

Sending you good thoughts and hope you find the strength to keep going forward.

Jodie


 
Old 07-13-2012, 05:41 AM   #3
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Re: Is it ever too late to manage Lyme Disease

Seacluded (love the moniker!),

Sorry to hear of your travails. Unfortunately, this is a story similar to many told here. When this nightmare will ever end, with the medical profession denying chronic lyme exists, I don't know. In the meantime, many continue to suffer in the wake of this ignorance and arrogance. Have you watched the CD Under Our Skin? If not, it is easy to obtain and well worth the time.

There are LLMD's in New Jersey, NYC as well. If you do research I'm sure you will find their names. I do have another suggestion, though. With chronic late-stage lyme abx is often not that successful. I don't want to discourage this, though, as this is just what I've heard over the many years and I never did abx. Salt/C is an alternative treatment that works well for any stage of lyme, but is particularly effective for chronic lyme. Like you, I have had lyme for well over 20 years and salt/C, I believe, has cured me. If interested, you could look into the excellent lyme book - The Salt/C Plus Protocol for Lyme Infection by M. Fett.

I hope you get the help you need so that you can start to turn a corner in your health and healing

Jen

Last edited by jenj770; 07-13-2012 at 05:43 AM.

 
Old 07-14-2012, 07:51 PM   #4
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Re: Is it ever too late to manage Lyme Disease

Thank you, everyone, for the good advice. While I am here in NJ I will find a LLMD as I know when I get back to SC the search would be fruitless.

I have stiff fingers tonight so can't post much but I did wish to thank you for your kind help.

I will post what I have found if, and when, I find it. Thanks, Seacluded

 
Old 07-28-2012, 05:48 PM   #5
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Re: Is it ever too late to manage Lyme Disease

"I am now on Medicare and I am SURE they don't pay for that, though I haven't checked."

Hello Seacluded

I, too am new to this site....and to Lyme. I'm not even sure how to reply to a post yet....nor how to start one. So, I'm hoping my reply posts correctly.

I recently found out that Medicare does reimburse for any "out of the pocket" charges for this disease. They will also pay for what is submitted to them from a doctor. As to what percentage they pay, I'm not sure. The way it was worded to me, sounded like they pay 100%. I hope you check into it soon, because this will be a way you can afford to get the help you need.

JaeElle

 
Old 07-29-2012, 12:56 PM   #6
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Re: Is it ever too late to manage Lyme Disease

Would like to change part of my reply, above.

I just found out that Medicare only pays for the lab. Still, that helps a lot.

 
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