posted
Hey Everyone. I have probably had Lyme for at least 6 years and have only began treatment 8 months ago on low dose Doxy(200 MG) Like many on here, I went undiagnosed for years and was made to feel like it was in my head....until I came on here and got the name of a good LLMD on Long Island. Below is my story:
6 years ago: Unexplained case of foot drop that lasted two weeks and cleared up. MRI, numerous tests all negative and attributed to a pinched nerve.
5 years ago: Numbness left side of face, left eyeball, left shoulders, numb teeth and gums, frozen, stiff fingers, calf weakness, lightheadedness, brain fog. MRI, neurologist visits, numerous diagnostic tests including Lyme test, all negative.
Symptoms continued with no diagnosis. When I shaved my head for charity, I noticed some very peculiar perfectly round raised rashes on my head. I also had one in the middle of my chest. Got some ointment and they cleared in a few weeks.
4 years ago: Extreme fatigue, continued numbness issues, tingling, ``bee sting feelings'' weight gain, depression, intolerance to alcohol, vision blurriness and spots and generally feeling that I exist as a ``floating head''
3 years ago: Weakness, fatigue, numbness continue.
2 years ago: MULTIPLE EPISODES of feeling I am about to pass out to the point where I asked strangers to hold me up.
I had about 10 of these episodes over a few months. Immediately back to Neurologist and Cardiologist, EKG, Halter Monitor tests all negative.
Cardiologist said I had vaso vagal response to being dehydrated and over stimulated with caffeine and Nicotine as a smoker and coffee addict.
Girlfriend complained about me choking in the middle of the night so I had sleep tests done and was diagnosed with severe obstructive sleep apnea (Stopped breathing 65 times per hour during the night)
Immediately prescribed CPAP and fatigue improved. With the CPAP machine, my results are only 3 incidents per night which is better than a normal person.
Even with the treatment, the fatigue, weakness and ``out of Body feelings'' continue. My joints begin to ache and my muscles.
I feel like I have been in a car accident but it doesn't go away. I come on here and get in contact with Dr R in Long Island who runs an IGENX test which comes back VERY positive for Lyme, Bartonella and Rocky Mountain.
I begin Doxy 200 MG per day and improve. I start taking small does prozac, Vitamins and feel better of the course of the last 6 months. I go from feeling like a 2 out of 10 to say a 5 or 6 out of 10.
Last week I start getting the feeling I might pass out again and this is the worst of all the symptoms.
My hands are very sweaty 24 hours a day. I wake up with sweaty hands. The brain fog the fatigue and weakness and the ``floating head'' really are the worst.
I can deal with being numb but feeling like you will fall makes you feel helpless.
I missed a few days of ABX because I forgot them when I went on a trip. When I got back, I doubled my dose to 400 MG and immediately felt worse. Seems to me like a herx. Feel like a 2 out of 10
I want to get rid of this and am ready to do what ever it takes. Five years ago I was a very athletic, in shape guy full of energy.
I was at the gym 6 days a week and could party till 4 am. I have since put on 50lbs and walking up stairs makes me nearly pass out.
This place is a great support. Any feedback or suggestions would be appreciated. I am more of a believer in traditional prescription medicine, but any advice would be great. Like all of you, I want my old self back.
Posts: 29 | From New York | Registered: Apr 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I am not sure I am understanding you correctly. Have you been on 200mg doxy for 8 months with no other meds the entire time?
If so, that does not sound like good lyme treatment.
Are you familiar with the Dr. Joseph Burrascano lyme treatment guidelines? Here is a link:
If you read this document, you will see that this preeminent lyme specialist believes in high dose combination antibiotic therapy. That is how I and my friends have gotten rid of lyme and company.
Your treatment, if it is just the 200 mg doxy, is inadequate to rid you of your diseases and so they are just continuing to play havoc with your body.
When you increased the doxy to a better dose, you saw how your body reacted.
The doc is the key. Find yourself a doc who really follows the Burrascano lyme treatment guidelines.
Send me a private message if you want to discuss further. The doc is the key.
Posts: 9931 | From Maryland | Registered: Dec 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Hi & welcome Drewby,
Nice to meet you but so sorry it's under the lyme circumstances. Hope you find more answers in your quest for better health.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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bettyg
Unregistered
posted
drewby,
boy, what a wonderful, detailed health history you have; good for you which helps drs. too!!
sounds like bart or is it babs; i can't keep the symptoms straight, but they are shown in my newbie package link; use table of contents to find easier ok.
please send me a private message, it's 2 people standing together icon, right side of your name. i want to make sure i have the drs. info on long island dr. you are going to ok. thank you.
here's what i need if you have it ok:
we need full name SPECIALTY street addy city, state
phone no. fax no. web site or email if possible
cost per hour for 1st visit cost for followups
do they take insurance? what kind? treat by IV or ORAL?
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
drewby,
Welcome! I have to agree with TF.
I have only been treating for 5 1/2 weeks, but I am taking doxy 200 mg twice daily, zithromax 250 mg twice daily, and plaquenil 200 mg twice daily.
Plus my Dr has me on alot of supplements.
It does not sound like your med treatment has been comprehensive enough.
Hope you can get just the right treatment, and feel alot better.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Hi drewby, and welcome to the party.
Wow, I thought I kept detailed records of my symptoms (like the mental case that I am--you've been there, right?).
I have no clue how long I may have had Lyme and company, but I just started really having bad symptoms 9 months ago.
I finally got to a LLMD and he just started me a week ago on Doxy 100mg 2x a day.
We'll re-evaluate in 6 weekws when I go back.
I agree though that maybe you should be adding some other meds to the mix, although I'm inn no way well-versed enough in these diseases to say which ones.
It sure wouldn't hurt for you to get another opinion from another LLMD. We're all in this to get better, whatever it takes.
So, welcome, and we look forward to seeing more posts from you.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
Thanks for the responses everyone! I just picked up some Nutritional supplements as per Dr Burrascanos guidelines. Man, I have alot of pills to pop!! Have a multi, B-12, Vit D, acidopholis, magnesium, EFAs, COQ-10.
I need to talk to my Dr about more aggressive abx regiment. Going to cut out all complex carbs, quit smoking again. I have not had alcohol in a month. I am also going to FORCE myself to the gym. Like I said, I have put on 50lbs in the last 5 years. Used to be a lean 200lbs. Now I'm shopping for size 40 pants! lol. I attribute it to being too wiped out to excercise and eating excessive carbs/sugar.
If anyone has any suggestions about the best ABX combos and dosages for my Lyme and Co-infections, please PM me. I would like to give orals a chance before doing IV if its necessary. If my insurance won't cover it, I'll buy them online.
Also, does anyone know anything about B-12 self injection? When i get my injections(once a month) I feel pretty good for a few days and I would like to get them once a week but seems like self injection would be very convenient and cheaper.
Thanks again.
Posts: 29 | From New York | Registered: Apr 2008
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posted
My LLMD wrote me a perscription for the B12 injections. I picked it up at the drugstore syringes and all! I get a shot every 3-4 days.
Posts: 379 | From Sydney, Australia | Registered: Nov 2008
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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My Dr has me taking a break from the Oral Doxy and Ceftin as it really isnt helping me. About a year of oral ABX and no better. I am taking a temporary break and doing B12 self injections once a week. Next step will be IM injection or IV
My fatigue/weakness and "near Syncope" is just as bad as always., I am taking provigil which helps me get through the day.
I had a new MRI done which shows 9 small "inconclusive" lesions on the brain and the Dr. says he cant give a DX based on that. Great! Still have constant numbness, tinglin, pin pricks, fatique weakness and muscle cramps. The pain is really bad in the morning when i wake up and hard to get out of bed.
I just had Electrosonogram, Halter Monitor and stress test done due to "near Syncope" and weakness. The stress test was normal adn I think the other were too becuase the nurse said they would want to see me right away if they werent. I have another appt in a month. Im thinking a tilt test might be in order.
Posts: 29 | From New York | Registered: Apr 2008
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bettyg
Unregistered
posted
majority of lyme folks have lesions in their brains; 1 member i believe has 21 !!
but nothing showed you'd had a stroke since you had all the numbness confined to ONE side of the body?
posted
The neuro said he "isn't a big Lyme guy" and asked me why I was taking ABX so long. Typical. I really just needed him to read the MRIs.
He did say the lesions don't look like MS but they could be caused by an infection of some sort and I said "An infection like Lyme?" He said it could be.
No stroke, no Tumor and Cardio tests apparently normal. I guess I should be happy about that.
I am just severly weak and tired. My whole body aches constantly and I am always light headed and numb.
I helped a neighbor change a flat tire today and felt I would collapse after.
I am increasing my salt intake, cutting back on the caffeine and drinking lots of water and gatorade.
Also for anyone who has debilitating Fatigue, my Dr. prescribed Provigil and it has helped me alot. Really a wonder drug. I have extreme Sleep Apnea as well. With the provigil, instead of passing out at 8pm in front of the TV, I can actually make it past midnight. It does NOT make you jittery and you can actually go to sleep on it whenever you want.
Posts: 29 | From New York | Registered: Apr 2008
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I dont know anything about your doc. I live half a continent away.
You SHOULD have been on 400-500 this whole time of that doxy,,,anything less is NOT effective to get rid of it.
Either have a BIG discussion with your doc OR just find a more aggressive one!!
Its been ten years of no alcohol for me too because it made me feel so bad!! You CAN live without it!! But I could smell the beer pouring into a glass on TV, tonight,,,weird!!
Welcome, and stick around,,,we need more guys to balance out the other poster numbers!!(just kidding)otherwise-just don-
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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bettyg
Unregistered
posted
drewby,
you're going to love just don as we all do; he has such a delightful humor; picks us all up when we need it.
Lyme lesions and MS lesions....How do you tell the difference?
posted
Well, I had a ton of Cardio tests and all were normal EXCEPT the Tilt Table. I just about passed out and failed it and was diagnosed with Neurally Mediated Hypotension- Where your brain ande heart dont stay in sync and you have a sudden drop in blood pressure.
Research shows this condition is related to LYME DISEASE, Chronic Fatigue, etc. Its all connecting for me now.
My Lyme Doc upped my Doxy to 400MG a day which is still probably inadequate. I told him I am ready for combination antibiotics, IM, IV....whatever it takes.
He wants me to stay on orals longer. I am considering getting some additional ABX online to add to what he prescribed. Was thinking of buying extra doxy and doing 600 MG. he will be checking my liver enzymes monthly anyway.
I really want to try IM Rocphin.
Posts: 29 | From New York | Registered: Apr 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm sorry to hear about your health issues. They sound intense. Personally I'd find a new and BETTER doc. You sound like you need the best you can get! I wish you the best.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Starfall, This is the suckiest party I've ever been too! But welcome anyway Drewby!
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best wishes
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