posted
I am an oldie lyme guy. I am 49 years young now. Were told at age 4 I had Juvy Arthritis. At 30 I was crazy so I was told. At 37 I was told I had MS or ALS, it was Lyme.
It was clear I had it at least age 4. How I went through all those years. Things were always a challenge I put myself through a prestigious College. Was a big swinger making bucks.
My background is Medical Device sales so I researched for alternatives to spending the rest of my life in bed. Did 3.5 years of orals then 6 months IV.It was brutal and I would do it all over again.
I am now walking talking and still alive to enjoy my sons now 22 and 20. Being on disability for 10 years has been rough. It does not pay well.
I have read Dr.B's info and the Hyde Park's book. I just got repeat blood work done. It shows nothing good.
Total pituitary and Hypothalmus failure. My thyroid #'s are low and I have been on Synthroid for 7 years as well as testosterone both around the same time. If I recall we did thyroid meds for 6 months to see if testosterone would improve it did not.
So last summer was more hell on this earth. Constant ear infections, docs prescribing ear drops which I said no steroids.
Well I was assured it would be fine. Not only did they get worse.
I began to have cysts appearing in almost every crease on my body groin, armpits,behind below ears as well face chest back. Last summer was far worse than Lyme abx.
Turned out these cysts were full of a rare staph infection usually found in a woman's UTI. haha
Just crazy so the infectious disease guys see my immune system is not functioning well. They have been wonderful they have run every blood test I ask.
Turns out cysts were related to an hereditary disease called HS or "acne inversa". which is most common in black folks. I am white bread as it get's. My Dad had same issues. He is dead so I can't tell him. :-)
At the Infectious disease guys suggested I began taking oral immunoglobulin. If they did not work I would have had to receive donor antibodies.
They have changed things amazingly. A total lack of any more immune issues. I really feel at peace now that I am taking them. Just one of the reasons I love my infectious disease guys.
It is the fall and I have gotten through another steamy S.Florida summer. I have to say with this high humidity I never feel so good. heat so oppressive that every muscle is just slothy and relaxed.
Another reason I love my infectious disease guys if some finally realized My Simplex outbreaks were worsened by a fungal infection. Got a cream it got better but not wow great so I was given oral anti-fungal's.
Amazing results, I forgot to put my dork ear plugs in while jumping in the pool. I knew I would have an ear infection in hours. Did not happen. Turns out ear infections were being caused by a rare fungal infection.
So all this year an endo has been monitoring my endo #'s. At the beginning of all this My FSH and LH #'s were low.
This knucklehead lowered my Thyroid med, saying it was causing problems with FSH and LH low #'s. So we waited 6 weeks redrew and they were a bit better but still low.
On my 3 Month Follow up he ordered blood work again. Numbers turned out to be worse again. He said it was because generic thyroid med.
So we changed to brand and waited another 6 weeks with infectious disease guys to draw the blood. When they came back even worse I knew my endo was out of his league.
My spine specialist suggested with results so bad they be repeated because negative FSH and LH could not be right. Spine guy also has anti-aging practice. So he knows hormones.
The repeat FSH and LH numbers are still negative. Which means over a year we have watched my Pituitary and Hypothalmus have completely fail.
My thyroid numbers are still falling and my Cortisol levels are a point above Addisons. Looks like Adrenal failure is next to come.
Spine guy found a waiting list endo that you have to fax over blood work before seeing me. Even after he spoke with spine guy.
We were told it may take a week to review and see if he would see me. They called the next day to schedule an appointment. I have had to wait 6 weeks to see him 9/23.
I know once treated with hormones, I am suppose to live a full long life. Which I am counting on.
So if there are any other Neuro lyme folks who have braved this path before me. It would be great to hear your stories.
I have also researched how CNS interacts with Endocrine system. I now know why a disease of the CNS can at some point impair the endo.
I hope this endo is not going to be a putz. As my spine guy has an anti-aging practice he is down for educating himself to get me back in the saddle.
I do have to say the Infectious disease guys were skeptical at first. I now go there and I treated like a rock star by the docs.
They are seeing how Lyme really is insidious. They have all read Dr.B's and Hyde park book.
AS a lot of snow birds come from the northeast they now have 16 lyme Patients. Some who have never left S.Florida ever!
So there is 4 converted infectious disease guys now. My background in Med sales and training all my docs in Lyme. I just want to find people or docs who just know.
So if you have endo recovery stories I would love to hear them.
God Bless,
Paul
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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posted
Interesting story - you've been through alot.
I had a high prolactin count - 220, when it was supposed to be 20 - so they did pituitary exploratory surgery, and found no tumor, which completely confused the surgeon.
The prolactin level stayed high, and when I came in with Lyme, I had the level measured before I started with any treatment - still around 220.
With the various treatments I did, it dropped steadily and now it's below 100.
I did oral clindamycin antibiotics and have done a lot of anti-inflams like turmeric, noni juice, grapeseed extract and mangosteen juice.
So there's a hormone change story for ya - I think it is possible if you find the treatment that will cause levels to change.
Re thyroid supplementation, I know my Lyme doctor much prefers Armour thyroid and Naturethroid over synthroid.
I had a big change also when I went on Armour thyroid after testing low in T3. I felt present again, and the doc said that was because of increased metabolism. He said if I hadn't responded well to Armour, he would have switched me to Naturethroid.
I am not an expert in adrenal treatment but I know there's lots that can be done there too. One website you could go to for some info is www.betterhealthguy.com - if you contact Scott there, he could discuss adrenal support with you.
Maybe you could do both - go to see a really great Lyme doctor AND continue to get the ID docs educated.
Posts: 13171 | From San Francisco | Registered: May 2006
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Thanks Robin, I know what you are saying about being present. I know I am there but I don't feel like I am processing anything at times.
Like with my lowering FSH and LH values. With the 2nd to last blood and the levels were negative it did not sink in.
Then when the repeat testing confirmed the prior results and my doc telling me my FSH and LH levels were troubling.
His way of protecting me from the total truth, Although when he had not seen this before. I am sure as he had no answers he did not want to alarm me.
So it took me 3 days to finally have the switch turn on that they have failed. I just can't get my head wrapped around it.
If I was looking at someone else's results I would have gotten it.
I am also loosing about 2 lbs. a month. which would be great but my muscle mass is pitiful. I look healthy but if you feel my muscles they are soft and you can feel the bones.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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So do you have a good Lyme doctor? They would know what to do about your weight loss, etc.
You also might want to consider getting your T3 tested again, and if low, going on a trial of either Armour or Naturethroid, which are the glandular forms of thyroid. It was night and day for me in terms of being alert again.
Posts: 13171 | From San Francisco | Registered: May 2006
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