Topic: Doxy continuing to Help me.. 2 years on IV wasted time.. My thoughts for everyone
lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Hey everyone.. I'm still sick, so don't get me wrong. As an RN and even just the guy I have always been, I like pieces to fit together and I like to understand what is what.
Looking back, my very first symptom was a crazy anxiety that even Xanax, etc. didn't help. Then came shortness of breath from doing nothing. Then at the end of the first year, POTS (Postural Tachycardia).
I'm posting all of this b/c the very first LLMD said I was loaded with Babs. I had the PCR, but so hard to find in my own smears. I posted some pics on here, but I didn't see enough of the Babesia to be convinced this was causing so many of my symptoms. Despite this, I focused on Babesia treatment.
So, here is what I'm thinking and this might help some of you our there:
My initial Symptoms are def. Babs symptoms, but they are also very much in line with Autonomic Dysfunction which is Dysregulation of the Nervous System for those of you that don't know. Autonomic Dysfunction (AD), can cause soooo many problems with Lyme.. I can't even get into the long nasty list of discomforting things, but I do think in my own case, my Autonomic Dysfunction was mistaken for a terrible case of Babesia.
I'm not sure why I the Mepron made me so emotional, but I could never stay on it long enough to treat Babs if this was in fact my main problem.
So, I'm about a month now on Doxy. I started at 100mg 2 x day, then bumped up to 200mg about 2 weeks ago 2x day. Since I have started this drug, my Autonomic Dysfunction is still there, but it's about 50% or more not as intense. As a result, I am functioning. I'm getting out every single day and doing stuff.
Here is the weird thing: I now have Joint pain in my fingers pretty bad. It's not an Arthritic thing, but definitely pain when I bend my fingers. Not too bad, but also some pain in the knees and elbows as well. None of this is bad enough to need high levels of Narcotics. I do take Percocet daily, but it helps with my Autonomic Dysfunction more then anything somehow.
The best thing is that my overall mood is so much better on the Doxy. My anxiety is nothing like it was prior to this drug.
Looking back, I was on IV Rocephin for so long, but never felt like it was doing anything and it didn't give me joint pain. Not that I want joint pain, but my thinking is that it's been the Lyme all along causing so many of my symptoms and I've been chasing Babesia and Bartonella more then anything all along.
It appears the Doxy is getting to the Brain better then the Rocephin ever did. Hindsight is 20/20, but I wish I would have been on this drug 2 1/2 years ago instead of the Rocephin.
My only complaint is the Nausea, which isn't too bad, but my skin burning is Incredulous. I'm getting burnt even through some of my T-shirts which is weird. I'm wearing sunscreen SP 85, but it's as if I don't have it on. The pain I get from this burning feels like someone has a blow torch directly on the skin. My hands are the worst for some reason.
Anyhow, if you have bad Autonomic Dysfunction, you might want to try Doxy. The true benefits I'm getting didn't really start until I got to the 200mg 2x day. I'm seeing some good light that I never thought I would as in "Ever again".
Just thought I'd share this with everyone and the reason I've been MIA on here.
Best to everyone..
Gary
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
That's great that doxy is helping you...and it's cheap too.
The meds that I can say I know helped me for sure are doxy and bioidentical hormones.
I never could take doxy in the summer though, since the burning was too intense and I am very involved in my grandsons sports activities.
I hope you continue to improve on the doxy.
Don't look back...just enjoy today and everyday ahead of you.
-------------------- 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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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Wow, you have me wishing I would've given Doxy a real try. I had to stop both times due to severe head pressure. I kept stupidly believing Pseudotumor Cerebri - WRONG. I have never taken drugs in this class.
Probably the worst drug for the guy who spends tons of time outside in the garden. Hmmm.. I guess priorities need to be made though.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Did Doxy ever cause you to have problems swallowing?
I have severe autonomic dysfunction, and I might should give Doxy another go. I quit it probably prematurely due to swallowing problems...guess it could have been Lyme progression, though.
Glad you are seeing improvement!
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
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Hope the doxy continues to work, but you definitely need to be aware of the need to add in a cystbuster.
I think since your fevers went away the doxy is probably helping with the ehrlichia or anaplasma -- whichever it was you tested positive for long ago -- as well as the lyme.
I wouldn't be too hard on yourself -- you have no way of knowing what reaction you would have had to the doxy 2 years ago. I would just consider it as the right med at the right time now.
Hubby has had vastly different results with the same meds at different points in his treatment. The list includes IV rocephin, oral levaquin, oral doxycycline, oral minocycline -- to name a few.
If you continue to improve on the doxy then I think at some point you will realize that the other infections are still major issues. Hope I am wrong, but most if not all with chronic long term infections eventually have to treat more than just lyme to recover. If present the other infections will become more dominant once the lyme is under better control. At least that is what hubby and many others have experienced.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Lymetwister- �have you read my posts on doxy �on your other topic?
My experience with doxy has been great. �My biggest problem at the time was head and neck pressures. �Headaches that migrated all over my head, �CCSVI type symptoms and feeling like something is blocking blood flow to my head. �It even took the burning sensations on the sides of my stomach away and resolved many other symptoms while on it. �I also had anxiety and depersonalization at times, all went away with Doxy.
Right before doxy I was coming off IV Rocephin and another month of �Ceftin (with Mepron and Zithro/Biaxin) . �I was getting worst and worst with new symptoms every week. �The combo of Doxy and Biaxin stopped the deathly episodes I had as well. �Others have gotten better with just the combo of Biaxin and Doxy. �When I removed Biaxin from the picture then the shortness of breath came back with a vengeance.
Yes your head and neck pressure and head symptoms will get worst with Doxy at first, but then should taper off. �It is known to cause increased intercranial pressure. �At first I did not think it would work and was about ready to give up. �I thought I was getting worst and the pressures were intolerable, but I stuck with it. �You will also get more twitches, and vibrations as the BB starts to squirm and hide for cover as well as encyst.
There is reason why you are feeling better rather quickly and perhaps for some of the joint pain (especially when compard to your months of ABX TX). �Read Dr Sapi's work that shows that Doxy works as a great cyst inducer & hence why we both have had alleviation of symptoms rather quickly. �
"Doxycycline reduced spirochetal structures ∼90% but increased the number of round body forms about twofold."
It has a 90% decrease in spirochete structure in big part due to forcing it into cyst mode.
So this means that the BB is disturbed at first (due to protein inhibition) and some will die and release particles clogging and causing part of youre joint pain. �The ones that are reachable by your WBC's are able to attack due to its now sluggish movement (assuming your WBC's are doing their job). �Many more BB will convert to cysts and enter various cells.
The more that convert to cysts, the more you will improve symptoms, but �they become untouchable by Doxy thereafter. �As was mentioned, you NEED a cyst buster as well (Flagyl or Tindamax) and if you dont take this your symptoms will return in just about the same order at which they resolved.
If you carry a large biofilm load, then you need a biofilm buster as well. �Doxy also works on Erlichia, Myco, and partly on parasites.
Posts: 2087 | From NY | Registered: Oct 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
lymedin,what are your thought of GSE as a cyst buster
Manybites doesn't Mepron need to stay a a certain level in body at all times/So is needed twice a day... If not is this what causes more fatigue... I've yet to see anyone mention x's 1 day with Mep. Lymrtwister how to you check for this Autonomic Dysfunction,
I have read that Fulvic acid bring .bio=filn down to get at skete's with doxy... < Long Life Health Conference, D wolf
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Have you tried taking omeprazole prior to the doxy? It may help with the nausea.
Posts: 1748 | From United States | Registered: Dec 2011
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
lymetwister, I am so glad Doxy is helping you!
It just goes to show how we all respond differently to these diseases and to the meds that treat them. It is good there are a lot of different treatment choices. It is important to switch meds up if they are not working.
I had the same reaction to Doxy. If I walked outside on a sunny day even briefly when wearing sunscreen, it felt like my skin was burning from the inside out.
You may want to consider Minocycline. It did not cause the extreme sun-sensitivity that Doxy did for me. But if the Doxy is helping, you probably would rather deal with the side effects right?
I hope you keep improving!
Posts: 4681 | Registered: Oct 2000
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Great news Gary.
It only takes a couple of days to get doxy out of your system if you are going to the beach. If you are super sensitive, see if your doctor could try you on minocycline. That is what I am on, that and Biaxin.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Did you ever think that Bartonella is your main issue?
My toe joints hurt when I go after Bart. It also can cause joint pain and is more likely to cause the awful anxiety vs lyme.
Doxy his Bart to some degree, but Rocephin doesn't.
Something to consider.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
So hard to say even with what I've already posted. My finger joints may be hurting from swelling b/c my hands/fingers are burnt from the sun.
I've been wearing biker gloves with the fingers cut off, but somehow, the top of my hand continue to burn and also my fingers. This swelling could account for what I'm calling joint pain in the fingers. I've been doing some work outside the house, so the pain in my knees could be from deconditioning.
I only know that my emotions/anxiety are much more in check and I have more energy, less out of breath, etc.
I wonder about needing a Cyst buster, but only b/c of those who just get bit and seek treatment quickly. They do a month of Doxy and nothing else. What happens to these folks ? Why doesn't the doxy put their Lyme into cyst form. Why don't they get sick when they are done their abx ? I know some of them do go on to get sick, but many don't.
I might have Bart and Babs too, but the Autonomic Dysfunction I've been dealing with for so long is stated as a "Lyme" symptom. Thats straight from Burrascano guidelines..
Can the other infections cause Autonomic Dysfunction ? Anything is possible.
Someone asked what is AD and how do you know if you have it. Found this online:
"Dysfunction of the autonomic nervous system (ANS) is known as dysautonomia. The autonomic nervous system regulates unconscious body functions, including heart rate, blood pressure, temperature regulation, gastrointestinal secretion, and metabolic and endocrine responses to stress such as the "fight or flight" syndrome. As regulating these functions involves various and multiple organ systems, dysfunctions of the autonomic nervous systems encompass various and multiple disorders."
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