phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Money spent, years wasted, Many treatments and still no answers or much improvement, that last. I pray one day someone will find a true answer to this horrible, disabling disease. I now question, What is wrong with me?? Really wrong but can't find any answers or doctors.. At 73 yrs guess I will never know.
Posts: 1058 | From VA | Registered: Oct 2010
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posted
Sometimes we can get more of a clue from what worked - the category, type of treatment. If you don't mind saying what helped, maybe people could comment here. Up to you to say what you want to here, of course.
Posts: 13171 | From San Francisco | Registered: May 2006
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Don't mind at all. I was undx for over 11 years was told I had mono,sinus / flu then fibo/cfs, with anxiety/depression. Lived with that dx for 9 years.
Finally went to a LLMD that I found through this site. First antibiotics, diet, supplements to build immune system and lower inflammation and probiotics .
After awhile the antibiotics (doxy) did a number on my esophagus. Went off them. Once esophagus improved started back on herbs and the natural approach. Wish I could remember the names.
After awhile I did see some improvement but nothing lasted so back on antibiotics Swithched to Clindmyacin then Ceftin, enough improvement to function but never felt well. I still take Ceftin which helps get me through the rough times.
Then my husband became ill and passed, since I have neglected my diet and meds. I was told to only expect a 40% improvement since I had gone undx for so long, not sure I ever reached that. I am so thankful I was able to care for my husband during his brief illness and did okay the frist months now lyme symptoms back big time.
I am not sure what the answer is for me. I never did IV's. I tested negative through Igenex for co- infections, Barb and Babs also PCR was ok and tons of other blood work negative. I know I am dealing with grief and horrible depression which doesn't help.
...............................................
(breaking up your post for easier reading for many here)
[ 11-24-2015, 06:33 PM: Message edited by: Robin123 ]
Posts: 1058 | From VA | Registered: Oct 2010
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dbpei
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Member # 33574
posted
phyl, I have been negative on WB as well - even Igenex. Yet I have antibodies for coinfections like RMSF and anaplasmosis. Also I am now testing positive for brucellosis, which is done through Quest Labs.
Recently, I tested positive for borellia miyamotoi, which does not show up on WB. It is done through a lab called Imugen in Norwood, MA. Perhaps your doc could investigate this and send a sample to them.
There is not much known about it so there is no magic cure. But insurance might cover treatment for you, if you are found to test positive.
Posts: 2387 | From New England | Registered: Aug 2011
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Razzle
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Member # 30398
posted
Doesn't seem like coinfections were ever treated. The coinfection tests are less accurate even then the Lyme tests, so negative results on a coinfection test is meaningless.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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First, do you think you match any co-infection symptoms?
Second, you said you did better for a while with herbs and the natural approach. Can you remember what they were? Many try herbs, including the Buhner herbs.
I think there's a lot more that you could try, but first, the first question before discussing treating Lyme.
Grief takes its own time. We need to be with it, and then let it rest as we live our lives - to me, it's a back-and-forth experience.
Posts: 13171 | From San Francisco | Registered: May 2006
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Not sure about co-infections symptoms will have to research them. Tks Robin just not thinking. Yes grief has no time frame, worse this year than last. Its been 13 mo.
Most of my symptoms other than depression/anxiety is unable to do much activity. Like grocery shopping or house/yard work lucky if I can go 30 min.
I get weak, fatigued (stay that way) and the darn weird head feeling, so bad I have to go to bed,plus more, resting for a couple days then back up till I overdo which is doing little.
[ 11-25-2015, 03:58 PM: Message edited by: Robin123 ]
Posts: 1058 | From VA | Registered: Oct 2010
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posted
It's fairly easy to google for symptoms of babesia, bartonella and ehrlichia, when you're up for it.
Re weak, fatigued, head feeling - has anything ever helped? Are you taking magnesium of any kind? Like I used to take malic acid and mg and that gave me energy. I also found that pollen gave me energy.
Head feeling - that's vague - can you say more about it?
I've been through grief too - not your kind of grief, but still - I find it takes time. If this is related to the anniversary, be good to yourself - lots may have changed for this time of year.
I have found it helpful just to tell that person how much I loved them. It's really about love, isn't it? And that's a beautiful thing and to be celebrated.
There's positive ways to look at what you grieve about. All things are going to pass in life. I think another way we can be about the situation is to thank that person for having been a part of our life, for helping to make us who we are and inform our perspectives in the future.
Sometimes it helps to think that we carry a bit of that person forward in the way we see and do things, like they're still having an influence in the world by how we behave in honoring their perspectives, lessons, etc.
What also helped me through it was thinking about what that person would want me to be doing. And I realized that they would want me to be a happy, active person. So I started back to doing things, for them.
Of course, you having Lyme, need to moderate that, to doing what you can. But maybe there's little things that that person would want you to be doing.
I've also done healing work as a written dialogue between me and the other person. Like this:
Me: (ask a question or say how I'm feeling) The person: (and I wait until I hear what they would say in response) And back and forth. It can go on for pages! Sometimes others come into the conversation too to speak.
I usually get somewhere with this, in terms of a further resolution to what's bothering me.
[ 11-25-2015, 05:50 PM: Message edited by: Robin123 ]
Posts: 13171 | From San Francisco | Registered: May 2006
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Phyl, you must hit the co infections. Blood tests are useless. They rarely pick them up. It's the clinical symptoms that count. A top lyme doc told me that it's not the lyme that kills people, it's the co infections. Maybe it's time to switch docs?
-------------------- --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
I read Phyl's description of her symptoms and nothing jumps out at me as a co-infection symptom, just Lyme symptoms. Does anybody see anything?
Take me - I have Lyme only. It is possible to have Lyme only. What I usually ask people to do is google the symptoms of the co-infections and see whether they think they match any.
Posts: 13171 | From San Francisco | Registered: May 2006
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Phyl, I noticed you had anxiety/depression before seeing an LLMD. Anxiety and depression can be bart. If bart was missed, you won't get better until you work on it. Bart forms lots of biofilm which protects lyme and company. That's why it is so important to work on.
Also, if you were like me you might have missed some symptoms that seemed like nothing to you. I didn't mention mine for a while to my doc because I didn't think anything of them.
I later discovered they did mean something after all (more co infections). But it took time for me to remember them and even to mention them to my doc. Try to keep a journal and tell your doc every little one you notice.
All that said, it takes a skilled doc to pick stuff up, one who doesn't give up.
-------------------- --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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TF
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Member # 14183
posted
Here's a summary of the coinfection symptoms from Burrascano:
BARTONELLA & "BARTONELLA-LIKE ORGANISMS"
--Gradual onset of initial illness.
--CNS symptoms are out of proportion to the musculoskeletal ones- if a patient has no or minimal joint complaints but is severely encephalopathic (see below), then think of Bartonella/BLO.
--Obvious signs of CNS irritability can include muscle twitches, tremors, insomnia, seizures, agitation, anxiety, severe mood swings, outbursts and antisocial behavior.
--GI involvement may present as gastritis or abdominal pain (mesenteric adenitis).
--Sore soles, especially in the morning.
--Tender sub-cutaneous nodules along the extremities, especially outer thigh, shins, and occasionally along the triceps.
--Occasional lymphadenopathy.
--Morning fevers, usually around 99. Occasionally light sweats are noted.
--Elevated vascular endothelial growth factor (VEGF) occurs in a minority, but the degree of elevation correlates with activity of the infection and may be used to monitor treatment.
--Rapid response to treatment changes- often symptoms improve within days after antibiotics are begun, but relapses occur also within days if medication is withdrawn early.
--May have papular or linear red rashes (like stretch marks that do not always follow skin planes), especially in those with GI involvement.
BABESIA SPECIES- --Rapid onset of initial illness, often with sudden onset of high fever, severe headaches, sweats and fatigue, thus it is easy to know when infection began.
--Obvious sweats, usually at night, but can be day sweats as well.
--Air hunger, need to sigh and take a deep breath; dry cough without apparent reason.
--Headaches can be severe - dull, global (involves the whole head, described like the head is in a vise).
--Fatigue is prominent, does not clear with rest, and is made worse with exercise.
--Mental dullness and slowing of reactions and responses.
--Dizziness- more like a tippy feeling, and not vertigo or purely orthostasis.
--Symptoms cycle rapidly, with flares every four to six days.
--Hypercoaguable states are often associated with Babesia infections.
--Rarely, splenomegaly
--Very severe Lyme Disease can be a clue to Babesia infection, as it will make Lyme symptoms worse and Lyme treatments less effective.
EHRLICHIA/ANAPLASMA- --Rapid onset of initial illness with fever, headache, prostration.
--Headaches are sharp, knife-like, and often behind the eyes.
--Muscle pain, not joint pain, and can be mild or severe.
--Low WBC count, elevated liver enzymes, and (rarely) inclusions seen in the WBCs.
--Rarely see diffuse vasculitic rash, including palms and soles (less than 10%).
--Rapid response to treatment.
DNA VIRUSES (HHV-6, EBV, CMV) --Persistent fatigue, made worse with exercise.
--Sore throat, lymphadenopathy, and other viral-like complaints.
--May see elevated liver enzymes and low WBC counts.
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
so sorry about your pain of your husband and all of this sick stuff too. terrible.
I do agree that coinfections could be abig cause. mine were negative on igenex too but 2 drs (and me) felt I had babs and bart and treated for them and got much better then.
like said above, blood work is faulty.
good luck to you, I hope you feel better asap!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3592 | From Eastern USA | Registered: Jul 2013
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