posted
I been on IV antibiotics for nine months, and I just took out my Picc line today because my insurance won't be covering anymore.
I feel exactly how I felt before I got the line put in. Head movements are always there, constant head pressure. Lots of head symptoms and heart related symptoms.
Also today when my nurse took out the line there was some discharge around the site and on the line. She said she'll call my doctor tomorrow about it, is there anything I should worry about?
I just feel so hopeless. I am starting to believe that maybe it's something else that's causing those head symptoms, and it's not lyme/ co infections.
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Ema!
I've been wondering how you were!
If you're having some discharge around the IV site, do hot compresses for twenty minutes every two hours. Or as often as you can.
This will improve the circulation and help the site to heal.
I'm so sorry that you're not feeling better. I'll have more suggestions after you get the IV site healed.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Ema,
You def should consider treating for parasites! Check the PARASITE WARRIORS SUPPORT THREAD. Many that are chronically ill are finding this to be the missing link. I will bring it back up for you.
Sorry you are still feeling so bad.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
How frustrating! You've been working at this for so long.
Have you considered protomyxzoa? It has a different treatment plan than Lyme.
I watched this video about a woman who had Lyme and she just couldn't shake some of the problems no matter how hard she treated.
"In my case, it was Lyme (from 2007-2011), and then the protozoan infection--FL-1953 aka Protomyxzoa Rheumatica (from 2007-2012) that was the cause of of my lingering symptoms after the intense two years of oral and IV ABX (antibiotic) treatments targetted at Lyme bacteria."
Posts: 2839 | From California | Registered: Jul 2012
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
So sorry, ema. Perhaps the antibiotics you were on did not target the infection that has been making you the sickest. Or it could be something else keeping you sick, such as parasites, heavy metals, ...
This is a horrid disease that is so hard to fight. Gael, Carol and Judy all have some good information for you. Hang in there and you will find your way. Posts: 2386 | From New England | Registered: Aug 2011
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I'm sorry the IV meds didn't help. Perhaps it is time to look beyond lyme as the cause of your continued symptoms. I did that after a year of orals. Food sensitivities and allergies, hormone and adrenal issues as well as mold and parasites need to be looked at.
Maybe consulting with a ll naturopath would help?
Posts: 1748 | From United States | Registered: Dec 2011
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Lots of good suggestions here. I too have been treating for 2 years, 18 months of which yielded no improvement (in fact, i got much worse). I drastically changed my protocol 2 months ago and am starting to see small improvements. Finally a ray of hope.
There's so much cross-over in symptoms, you need to make sure you're treating the right co-infections (I was not).
Also, there are many residual problems that can arise due to lyme & co's. You may benefit from being evaluated by other specialists. Once I assembled a "team" of dr's, including my LLMD, they were able to put together a full-body healing treatment plan.
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
Because there is a lot of crossover with symptoms, it is sometimes hard to tell if you are making any progress. Might be hitting one infection, but the symptoms from others are still making you sick. For that reason, some docs will treat more than one infection at a time. This means a lot of meds, and some people can't tolerate this. But it can work better than one at a time.
Don't know your history, but it is also usual to be on more than one med, even when treating only one infection at a time.
Posts: 2888 | From USA | Registered: Mar 2004
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gmb
Unregistered
posted
Ema,
Consider Babs, Bart, Proto, or other parasites. Babs treatment is minimum of four months, and most of us have treated much longer. Beat down babs and something else may pop-up.
At one point I was on IV Rocephin, Bactrim, double dose Mepron, Zithromax, Actigol, Cats Claw, GSE, Salt/C and Tindamax.
Now I'm back hitting Bart again with Rifampin, mino, plaquinel, Salt/C and Colloidal Silver and making progress.
posted
I know people who are on IV abx that don't turn the corner until much later in treatment. Nine months isn't that long but you have to treat coinfections too.
If insurance is not paying, I would continue with orals and see how things go.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
I second what gmb wrote. Consider the co-infections. That head pressure sounds like a symptom a lot of people talk about with babesia or proto.
Posts: 123 | From Washington State | Registered: Dec 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
There are so many co infections with lots of cross over, so it is hard to tell what is keeping you from improving. Head symptoms like you have were babs and/or proto on me.
Not everyone can handle abx. Some people do rife, ondamed, HBOT, Buhner herbs or whatever works for them. ART practitioners are also valuable, IMO. They can detect and treat things in a manner that western medicine has no clue about.
I have so many co infections that my progress is very slow. But it's progress none the less. It seems like one thing gets better but then another one pops up. That is normal when treating lyme and company.
Gael is so right, treating parasites is very important (proto is also a parasite--it loves magnesium, and other minerals). Also, heavy metals are major. You have to get rid of them or you won't get better. It's good to work on both of these at the same time.
Proto (FL1953) is the newest bug that is good at blocking meds, herbs, etc, and helps lyme and company flourish. This bug produces TONS of biofilm, so it protects all the bugs in your body. IMO, this bug is holding many lyme patients up. It is stealth, and unless you knew to look for it, you'd never know it was there.
Then there are genetic issues that practically all of us have but not everyone knows about until they test. You could have MTHFR and many other gene variants which would make treating anything more difficult. These are part of my problem. Had I not tested for them, I never would have known I had them, as well as what things to supplement with, and what to avoid.
Unfortunately, 23&me got shut down temporarily by the FDA (probably pressure from someone), but the genetic info they provide is quite valuable for anyone with chronic issues. We should all lobby for this company to resume testing (I have no affiliations whatsoever).
I would start treating for parasites if I were you. Everyone has them, IMO. They are part of the planet and it's impossible not to get them, even if you've never had pets (food, water, air)--JMO.
Also, Dr. H's new book will give you some ideas.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
Good to hear from you. I'm so sorry you are not any better.
Are you gluten free?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
What IV antibiotic were you on and did you take any oral ABX with it? Were you on any cyst busters?
If you only did mono therapy then that may be the reason you did not have any improvement.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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posted
your main concern for the moment should be that discharge from the line site. Follow up with your nurse and make sure she does what she should do, which should have been a culture.
If she didn't culture it get to the docs office and request, I'd be demanding if I got any resistance, a culture as soon as possible.
Posts: 803 | From USA | Registered: Oct 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
"Unfortunately, 23&me got shut down temporarily by the FDA"
The aren't completely shut down. They just can't do the health analysis portion.
You can still submit samples and get the raw data, then feed it into another health analysis site.
Posts: 2839 | From California | Registered: Jul 2012
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I totally agree about the discharge. Have you followed up on it? The discharge should have been immediately sent to a lab for a culture by the nurse. It could be seriously dangerous if it got into your bloodstream.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Right on Judie! That is still worth doing it for the raw data. The test is only $99.
Luvema, once you get the results you can run them through genetic genie, which will help determine what you can do for your own issues (worth it).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I'm exploring the genetic angle right now. My doc ran the MTHFR test through a regular lab. The results explained a lot.
Antiphospholipid and thrombosis panels are other avenues to explore.
Insurance should pay for these.
Posts: 2839 | From California | Registered: Jul 2012
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posted
0I did 3 yrs and only felt worse - never better. I am improving some with treating with herbs and also targeting parasites. I have little faith in ABX and I am reading many doctors think they are not useful except in early stages.
Posts: 153 | From Huntsville Al | Registered: Jun 2013
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