Length of treatment of Lyme

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

motox1027
Regular Member


Date Joined Jun 2009
Total Posts : 132
   Posted 7/23/2010 8:16 PM (GMT -6)   
 
I just dont understand from a medical and biological standpoint.....
 
If you have late Lyme 2 months of oral or maybe at worst IV anitobiotics really should clear you up.
 
I think after that point, if your not better, maybe its just damage from the Lyme.
 
Whats your opinion on doxycycline  VS  minocycline
 
Has anyone of this fourm actually healed themselfs from late Lyme?
 
Because if not, something is def. wrong, there had to be a bunch of people who responded to treatment.
 
If not, then why even take the antiobiotics.
 
And 31 and 34 ARE NOT expressed in Humans.
 
31 was used for the vaccine, because it kills the bacteria in a tick. Once the bacteria enters warm blood it does not produce 31 anymore.
 
Also you have to understand lab testing.
 
Its like working in a photo shop.
 
If you let it sit for along time, its going to looks +.
 
The postive control may just be too weak.
 
And 1/2 the population of the US has a + 41.

needshelp
Regular Member


Date Joined Aug 2008
Total Posts : 225
   Posted 7/23/2010 8:51 PM (GMT -6)   
motox,

You really need to do some research on the nature of this illness. You address some valid issues but like your recent posts you do so with reckless intent. Many of us on this board are struggling to get better and come here for helpful suggestions, to vent, or to seek encouragement. Why do you feel it necessary to behave this way? Grow up!!

lylaso
Regular Member


Date Joined Jan 2010
Total Posts : 57
   Posted 7/23/2010 9:15 PM (GMT -6)   
A lot of questions, but since you're asking about opinion, I'll give mine to you.

If you go on the lupus forum there are people left and right who will tell you that you can have lupus WITHOUT a positive ANA. If you go on the MS forum there are people who will say you can have MS with no lesions on the MRI. If you go on the anxiety forum, they will say it is all anxiety. And there are people on this forum who say you can have lyme and test negative for it (even via Igenex).

The lupus people are adamant that your symptoms are lupus...the MS people that it is MS etc etc. despite negative testing. I think the old hammer and nail theory comes to mind. We are all hammers and when a little nail comes along we try to claim it.

I remember sitting at the LLMD office praying that it was lyme. If not, I thought, I probably have one of the other two disease mentioned. When he told me it was lyme...I was so relieved. At least there is a cure I thought. Then I entered the lyme forum world and realized maybe I was wrong to "wish" I had this.

It is likely that most people develop some sort of autoimmune response from fighting off an untreated infection for so long. The root cause is lyme or some other bacteria/virus, but the end result is a body at war with itself.

I think people are attracted to the forum world because they are struggling to heal. Therefore I don't think that taking a poll here would accurately show how many people recover from late lyme. I do know of a lady who recovered completely after 2 years of treatment. This is, of course, conjecture. I know there are several past members here who no longer post because they are enjoying their "post-lyme" lives.


I think there could be books written addressing each of your questions.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/23/2010 10:43 PM (GMT -6)   
Motox,

WEll, if you have really studied this disease, you will have learned that everyone is different. Not just regarding Lyme, but regarding everything. ex: Some people live because of chemo and some people die because of chemo.

For my part, I will tell you this: Early last fall, I took 60 days of 3500 mg Amox. Those 60 days were Hell. But very shortly afterwards, I noted that a lot of symptoms were gone. I never felt 100%, but wondered if Lyme had been beaten and I was left w/ some damage. My pain was gone, no more sweats, had much improved energy (for a few weeks.....), and the throbbing and 'buzzing' had stopped. Amox is easy -- even at that dose, which is a whammy -- I thought I might really be cured.

Verrrrryyyy gradually, the body aches, flu-like feelings, 'buzzing', FATIGUE, and uncalled for, unannounced depression crept back in, along w/ a physical anxiety -- meaning I was not anxious about anything, but my body felt like it was --- it all tightens up and wants to freak out. Few months ago, I realized that almost all symptoms had returned. I was sick again. I could not afford the previous LLMD who did not take insurance.

I held out for the infectious Dr on whose waiting list I had been on for over a year. He looked at all my labs, ran a few of his own and dx'ed Lyme, 2 strains of babs, and chronic mono. He stated that during the fall, either the Amox had killed enough infection to make me feel better, OR the bacteria 'avoided' the abx by converting into cell form and/or gone 'hiding'.

SOOOOO.... In response:

1)My Lyme obviously reacted to the abx. In what way, there is no way to know. If you know as much as you say you know about this bacteria, then you know what I am talking about. But my utterance of 'pain free' (after 2 months) got my Dr. excited.

2) You said , ' 2 months.' Mind telling us where you got that info? I had 2 months heavy abx, and in all honesty decided I would believe that 60 days of 3500 mg/day could do it. I experienced great improvement, but my symptoms are back. From the info gained from my research, that is about par for the course.

I agree w/ you -- 2 months of high doses of abx SHOULD clear Lyme up. Maybe it does for many people. Every body (not everybody) is different. I have 2 strains of babesia which have not been treated. Maybe that is the reason that 60 days of high dose abx did not whip my LYme. Neither I, nor my Doctor knows. OH, btw, this is an infectious disease Dr who started out in internal medicine -- you seem so interested in credentials. Uh, and I believe MDs have studied more biology than you have, please correct me if I am wrong.

Motox, you may know a lot about Lyme. And I don't care if you are a biologist -- you do not know more about this disease than everyone else here. You come across as w/ an ego a bit inflated and in some areas you are entirely out of line. MDs that have more degrees than you are still researching and are still baffled by many aspects of this disease and proper treatment.

I encourage you to continue w/ your education on Lyme, which most of us have done for years, before you go challenging everyone here.

I will give you the benefit of the doubt: Maybe this is the way some people think and act when they do not understand what is or might be wrong. IN that case, you should continue to research your own illness, meantime stop challenging and putting everyone here on the defensive. We DO have the sense to know that we are sick, and MOST of us have Lyme diagnosis from qualified Drs and/or labs.

And, uh, OH, and I request your source that states half the population has 41+.

AND, huh? 'If you let it sit for along time, its going to looks +.' Where did you get THAT info? AS YOU KNOW, WBs must be read w/in 24 hours to be valid. Letting the blood sit long enough and any antibodies that may have been present, no longer are.

Again, what is your point here?

If you feel like responding, I would respectfully request that you answer my questions (the whys and the wheres) rather than simply making remarks.


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Post Edited (+Lyme) : 7/23/2010 10:54:00 PM (GMT-6)


motox1027
Regular Member


Date Joined Jun 2009
Total Posts : 132
   Posted 7/24/2010 12:46 AM (GMT -6)   
I believe that everyone is different, never said they were not. Whoever told me to grow up, needs to grow up. None of my statments are reckless. If you dont like them dont comment on them, unless you have something to say on the informaton in the post.

6-8 weeks is an AVERAGE treatment time. If you want referecnces on this email me I will provide. There was a study done showing that after that there was no more benefit from anitbiotics. It makes sense too, as a bunch of people on here are still sick after taking them for years.. This is a good point. Thats why I said has anyone on here actually been cured. Read that again, see what I mean. If your still sick after taking years of anti's and no one is getting better than why take. Anyways, thats not the whole point. The point is that a good study was done and it showed no benefit after this much time. This may not apply to all cases. Email me for the study.

You are being treated it looks like a docotor who is not a LYME specialist. If this is true and you tested + for Lyme on the CDC test, then I agree with the treatment.

I may act cocky, but its for a reason. You guys fighting with me are helping ME see the other side, so I can make my own opinon. So dont take it like that...... But please bring on the arguments..

The CDC has tested for band 41 in many normal people without symptons or Lyme. This was done on 1000's of people of years. More than half were + for 41. I can give you the number of the person who ran this test. 41 has nothing to due with Lyme in detail. It just helps move bacteria through the flow.

As far as the "sitting thing" its hard to explain. If you saw a lab slide in person you would see what I mean. It has nothing to do with time, thats my fault for making it look that way.

What I am trying to say is, that if a lab has too weak of a positve control, the whole would would be + for many bands.

If you send your blood to the CDC and another sample to Igenex and another to say Igenex or another lab, I wouldnt doubt if they come back different. This all has to do with the + control. The CDC has way way more experince than any LAB in creating a + control. You cant argue that.

Whoever said the CDC's tests were based in the 70's this is complete wrong. There last study was in 2006.

I will quote an article from the CDC........

"Misconception 5: Studies of the performance of serologic tests use circular
reasoning
This concern stems from the fact that the clinical signs and symptoms of
Lyme disease after the first weeks of infection are not unique to this illness.
Clinical findings are not specific enough to permit a confident diagnosis without
laboratory testing. These considerations raise the important question of how to
properly select serum samples for studying the performance of serologic tests.
To avoid circular reasoning, a previous positive serologic result should not be the
basis for inclusion of a specimen in such a study. However, independent
assessment of infection status, for example by bacteriologic culture, is routinely
successful only in early disease [18] and is generally performed only in research
settings. This problem is well-recognized by investigators.
To approach this problem, we look to the natural history of untreated Lyme
disease. Patients with late disease frequently have a documented history of
earlier signs and symptoms of Lyme disease that support the clinical diagnosis.
12
For selection of “gold standard” specimens for assessment of serologic test
performance in later Lyme disease, serum from patients with antecedent clinical
findings compatible with earlier Lyme disease are often used (Slide 8).
Supplementary research tests such as PCR add additional confidence to the
classification of some specimens.
Patients with early neurologic Lyme disease commonly have a history of
recent EM. Lyme facial paralysis, for example, was associated with EM in 72-
87% of patients, depending upon the study [28]. Patients with carditis, an
uncommon presentation of Lyme disease which occurs in the early weeks of
infection and manifests primarily as atrioventricular block, also typically have
either previous or concurrent EM (>80%) or sometimes early neurologic Lyme
disease . Patients with late neurologic Lyme disease, a rare condition,
generally have a history of other clinical manifestations of Lyme disease such as
EM or Lyme arthritis. In our 2003 report in which 100% of 11 late neurologic
Lyme disease patients were seropositive, all patients had antecedent other
clinical manifestations of Lyme disease that were the basis for including the
serum samples in the study [10]."


I Bet there are allot of people out there who have Lyme with - tests. I agree !!!!

I like this forum. However I dont know why you people wont question things. If you did it may take years but it would get people going... Eventually the CDC would have too look into better testing and treatment and people like you and me would feel better. They are not going to do anything until then, so I am going to fight it all I can. If you dont want to thats fine.

Thats why I question Igenex. The botttom line is if there tests are so good and state of the art, then prove it.

Pay another Lab to vaildate the results. Its that simple. If I owned a testing company, I would do it, to prove my theroy and testing. You think they would want to!!!!!!

And if its right then good!! Then the CDC would have some answering to do, and Lyme would then be heavily studied. All these Lyme doctors are basing allot of there knowledge on Labs like this.

Like I said. Take 5 samples of your own blood from the same blood draw, send it to a Lyme lab with different names on the tests from differnt places, and see if they come back the same results. If they dont we have a problem, no argument there........

I am talking about ALL Lyme labs not just certain ones.

You know how allot of Lyme doctors dont like to prescribe IV antibiotics. Well I read a court case about a doctor who got shut down because they were receving funds from these health care companies.

The CDC does even say in bad cases IV antiobiotics can be used. But there have been stuides showing that a say 6 week course of oral is just as good as a 4 week IV.

I am not on anyones side here. All I know is besides Lyme the CDC DOES have many many good tests they have developed. Yes some were bad and some had to be redone, but look at how many good ones they have.

There experierice is superior to any other test LAB. They might not know everything aboout Lyme. BUT all the other stuff about say 31 34, and just Lyme in general that the CDC does nto approve is in reailty coming from other Labs.

Its not like Lyme doctors just make stuff up or make reckless theroies. They are good people! but allot of there stuff is based on Lab results not from the CDC.

Again, my point is why cant one of these Lyme Labs prove it. Call one and ask about it, and push for an answer, I bet they will hang up on you, or give you a nonsense answer.

There is not one good reason why they cant validate there results.

Look, I am just trying to help here. If you found out your results were valid you would prob be really happy right?

Well if they were not, then maybe its not Lyme, which is a good thing too.......

This is not questioning about Lyme as in the CDC right.

This is questing the quaility of lab protocols.

I hope one day they prove me wrong. I really do.

But its the world, you never know whats right, you are taking there word, and they are taking your money.

If I had an extra $10,000 I could do a really really good study on Lyme labs.

This is pocket change for them.

Again, I am just trying to help the Lyme cause here. I am on neither side 100%, but I do weight a little but more on one.

The CDC can back up there results a million times, call them..... Its time for everyone else to do there part.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/24/2010 2:19 AM (GMT -6)   
Hey Motox,

I think it is on "Under Our skin", but I could be wrong but, there was a study done on patients with late stage Lyme Disease that weren't getting better with the 6-8 weeks of antibiotics. This doctor started giving it for longer and that's how they discovered that antibiotics needed to be given for longer for "some" people. Not all. I don't know all of the details but once I'm feeling better I will try to look it up and post it for you.

Band 41 is also known to pick up gum infections. That's why other bands, with 41, should be considered.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 7/24/2010 3:22 AM (GMT -6)   
Motox,

I had tests done through 3 different labs. Here are the results:

IGeneX = IGeneX Positive IgM/CDC negative
Another lab (this one only uses CDC criteria) = CDC negative
Mayo Clinic lab = CDC Positive IgM.

I did not get my CDC Positive result from IGeneX.

Also, if you have read my post on your other thread about lab testing, you should remember me saying that I have tried treatment for all the other stuff that my symptoms were diagnosed as (primarily autoimmune), and only got worse. Now that I have been in treatment for Lyme (chronic active infection, based on positive IgM and symptoms), I am getting better (slowly, but there is improvement). I don't know of any other explaination for this other than that there is an infection at the root of my symptoms. But when tested for other infections (EBV, CMV, STD's, HIV, Whipple's Disease, TB, parasites, bladder infections, lung infections, etc. etc.) all of these tests come back negative. The only positive infection test result I've gotten is the Lyme test. Please explain to me how someone who is improving on long-term abx & who has a positive Lyme test result + symptoms consistant with late-stage neuro-Lyme cannot possibly have Lyme? If you are so full of answers, please tell me what I have wrong with my body?

Also, you should know that I have an immune deficiency...perhaps this is why I have a chronically active infection and why it is taking longer than the "average" individual to recover?
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle & other liver support herbs, Magnesium, homeopathy.


3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 7/24/2010 7:30 AM (GMT -6)   
I just want to say that I have a dear friend who was diagnosed with Lyme several years back. Today she is a thriving healthy person. If she had followed the CDC guidelines and only taken a month antibiotics, she would not have recovered.

It took her nine months on IV treatment, and additional 5 years of antibiotics to get well. As I said she is doing great now...she has not relapsed. So maybe we all have our own timeline on what it takes to get us well. Hers was around six years...mine could be different.

Also, I took a month of doxcy 100 mg 2x a day and did not get well. I tested IgM positive last year and I just tested IgM positive again this year. So what does that mean...this is why more studies need to be done.

I don't think there is anything wrong with playing the devils advocate, because someone should always be questioning instead of settling.

The thing is that there are too many people still having issues and it should not be ignored. The fighting back and forth about it is riduculous. Stop fighting and try to figure out why. The CDC should be working with the doctors who treat this disease on a daily basis.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/24/2010 8:33 AM (GMT -6)   

Motox,

Here is my fork in the road with you. I paste your response to me:

'You are being treated it looks like a docotor who is not a LYME specialist.'

You are not just sharing info here. You are challenging people when often you don't know what you are talking aboutMy Dr is an infectious disease Dr who started out in internal medicine and has been an ID Dr for over 20 yrs.  This Dr specialises in AIDS, CFS, and LYME, amongst others. His waiting list for LYME patients is about a year and half long. He has been treating Lyme for over 20 years. His reputation in his specialities in Kansas City is reknowned.  He is still actively researching Lyme and the other diseases and publishing research. He is currently researching the HHV6 virus and researching the part this virus plays in many of these diseases.

And his Lyme patients get well. That's how the waiting list moves at all.  You think I'm going to sit here while you make a statement like that w/o attacking you?

I have not read all your stuff from the CDC.  All I will say to that is that I have never discussed or argued bands 31 and 34. As far as the CDC goes, I do not place my faith in this agency. The CDC recommends vaccines that have not properly been tested and studied. (look at the oldest history of the swine flu vaccine)  The CDC's stats on many issues is skewed.  The CDC is too much a political agency.  The CDC is behind the times and the CDC has been known before to be irresponsible.

I have been thru it w/ the CDC before,  regarding dog attacks and predominant breeds. People spout their 'study' all the time, yet the CDC had to later retracted and correct their own flawed 'study'.

I do not believe that half the population has +41. I do not have a positive band 41 and am betting that half the people here do not have it either.

My WB was not CDC positive. I don't care. I have a positive diagnosis from 2 LLMDs which is based on labwork, clinical diagnosis and my history.  And my labwork was done by Quest and Labcorp. I've never used Igenex.

As for long term abx, I am not sure what I will do, but for the time being, I will kill as much bacteria as possible w/ abx.  I will place my faith in a Dr who has treated this disease for as long as he has.

I love researching and I love learning things from people. But I can't deal w/ folks who spout off at the mouth when they don't know what they're talking about and/or project their judgments on people or things about which they know nothing. Here, I am specifically referring to your statement about my Dr, who you know nothing about, altho it applies to other statements you are making.

I'm choosing to ignore Motox posts, reason being, you grab a piece of something and run wild w/ it. You put people who are very sick on the defensive, when you have no idea what their history is or who their Drs are.  Mostly, I am not arguing w/ someone who relies on the CDC for information.

 

 

 

 

 



Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Post Edited (+Lyme) : 7/24/2010 10:02:30 AM (GMT-6)


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/24/2010 8:56 AM (GMT -6)   
I would like to add something about long term abx. My father, at nearly 80, received a hip replacement. He then contracted an infection, enterobactor clocae (spelling is close) and was deathly ill. He went thru another surgery to clean the hip, etc. His ID Dr has had him in Cipro for at least 2 yrs and says that he will have to be on it for the rest of his life. The danger of this bacteria is just too great. The surgeon agrees.

Yes, we know all the possibilities of super bugs, etc. But the Dr says he cannot risk getting off the abx. There is no way possible to ever prove that there is no EC inside of him. And if this infection flared up again, it will kill him.

Yet, the IDSA maintains that long term abx are unacceptable, regardless. I guess that only applies to LYme, and not to any other infections.


Bit 1972: Acute and chronic tonsillitis, UTI, miscarraige, appendicitis, hypoglycemia,  chronic neck pain w/ crushed vertibrae, chronic severe back pain, mitral valve prolapse, depression, resolution?
 
Bit Mother's Day 2007: Lyme, Babesia microti, hypothyroidism, EBV, HHV6, Parvovirus B19, low adrenals &misc other hormones, depression, anxiety, more of the above.

Post Edited (+Lyme) : 7/24/2010 10:06:38 AM (GMT-6)


MarriedtoLymeinNJ
Regular Member


Date Joined Sep 2007
Total Posts : 273
   Posted 7/24/2010 9:14 AM (GMT -6)   
argh- not sure why I let myself get sucked into this...
Here is a blog post I wrote about Lyme research and treatment:
http://faerywings.wordpress.com/2010/06/15/new-research-on-lyme-disease-and-its-treament/

and the research:
http://www.neicenter.com/downloads/ChallengesOfLymeDisease.pdf

Notably:
The spirochetes attract each other to form a very large conglomerate of spirochetes, which then secrete a biofilm made up of polypeptides and polysaccharides (EPS-extra cellular polymeric substance). This biofilm protects the spirochetes from phagocytosis and allows them the potential for antibiotic resistance. In a culture medium, Luecke used 1,000 times the normal dose of antibiotics to kill organisms. This is not a possible option in humans. The biofilm also enhances the bacteria's ability to perform gene transfers, thus increasing the potential for antibiotic resistance. In general, if a bacterial organism has the ability to change its morphology, there is an increased likelihood that it will be able to persist in a host.
Chris: Diagnosed Lyme, Chronic Mono
Married to Lyme in NJ aka Gary: Lyme, Bartonella
Mom to Scott: Lyme, Babesia, Bartonella
Mom to Caitlyn: Lyme, Bartonella
My Blog: http://faerywings.wordpress.com/


MarriedtoLymeinNJ
Regular Member


Date Joined Sep 2007
Total Posts : 273
   Posted 7/24/2010 9:17 AM (GMT -6)   
On abx:


Dr. Eva Sapi quoted several studies in which researchers have demonstrated that the organisms survive despite antibiotic treatment, even in early cases (Smith et al., 2002: 5-10% treatment failure after treatment of patients with erythema migrans rashes). She quoted studies by Moody that show treatment failures and by Brorson et al., who showed that the cystic form of B.b reverts back to the motile form in the CSF. She also emphasized that B.b is found during biopsies/autopsies in the hippocampus—an area affected in Alzheimer's disease. She quoted Barthold et al. (2010), who found positive PCRs 3 weeks and 4 months after treatment.
Dr. Sapi studied the effects of multiple agents on both the motile and round bodies and found that:
1.
Plaquenil increases round bodies (European data show that it decreases round bodies).
2.
Although Tigecycline is very effective in vitro against round bodies, mouse studies show persistent infection when this antibiotic is used.
2
3.
Penicillin alone increases round bodies.
4.
Doxycycline alone also increases round bodies, and 3 weeks after it is stopped the motile form emerges.
5.
Combination of the 2 above is more effective but still result in persistence.
6.
Flagyl is better than all of the above in curbing both forms.
7.
Tinidazole is even better than Flagyl.
8.
Alinia decreases both motile and round bodies
9.
Doxycycline and Flagyl are very efficient in decreasing both motile and round bodies.
10.
Doxycycline and Tinidazole are also very efficient at killing both motile and round bodies.
11.
Doxycycline and Alinia are not as effective as the above combinations.
Chris: Diagnosed Lyme, Chronic Mono
Married to Lyme in NJ aka Gary: Lyme, Bartonella
Mom to Scott: Lyme, Babesia, Bartonella
Mom to Caitlyn: Lyme, Bartonella
My Blog: http://faerywings.wordpress.com/


MarriedtoLymeinNJ
Regular Member


Date Joined Sep 2007
Total Posts : 273
   Posted 7/24/2010 9:18 AM (GMT -6)   
In conclusion:


ALL RESEARCHERS AGREE THAT INFECTION WITH LYME IS VERY UNLIKELY TO BE EASILY TREATED AND WILL PERSIST IF NOT AGGRESSIVELY TREATED

Above quoted from: http://www.neicenter.com/downloads/ChallengesOfLymeDisease.pdf
Chris: Diagnosed Lyme, Chronic Mono
Married to Lyme in NJ aka Gary: Lyme, Bartonella
Mom to Scott: Lyme, Babesia, Bartonella
Mom to Caitlyn: Lyme, Bartonella
My Blog: http://faerywings.wordpress.com/


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 7/24/2010 9:20 AM (GMT -6)   
white roses

your friend who took the abx for 5 or 6 yrs and got well...

was she a late stager or did they treat her early/

how long was she sick before she started treatment?
hep c , lyme
Dad has lyme


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 7/24/2010 9:30 AM (GMT -6)   
As far as long term abx go, you might want to read the series of blog posts written by Sarah Olson on LymeNet Europe. She did IV Rocephin for at least 9 months (maybe longer) and it did the job. But she persisted and did not stop even when everyone else told her to stop because it was not working! They had to take out a second mortgage to pay for the medication. She says that the Rocephin saved her life. Note that she did have to use other abx as well to clear up some remnants of the disease (or maybe coinfections?).

Here is the link....it is a LONG story but worth reading!: www.lymeneteurope.org/forum/viewtopic.php?f=10&t=157

P.S. My sister-in-law had Lyme disease 10 years ago. It took 18 months of various abx to clear it up, but she has not had a relapse.
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


3whiteroses
Regular Member


Date Joined Jun 2009
Total Posts : 184
   Posted 7/24/2010 10:03 AM (GMT -6)   
@ bucci

I will ask her when I see her how long she had it before diagnosis, and what stage she was in. She is my neighbor and has so much energy and is always on the go. I think she does not stop because when she was sick she was unable to walk.

Whenever I feel down I think about her and I know I can get better too. I'm not certain how long it will take, but I believe it is possible.

We can not compare ourselves to others, just share our stories and help each other.

1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 7/24/2010 3:34 PM (GMT -6)   
I feel that alot of the time, we have so much that has gone "haywire" with our body due to Lyme, as well as the time it has taken for many of us to start treatment.

I think LLMD's need to look at the WHOLE picture of our body...not just Lyme.

I know for me after treating for 2+ years of abx...it was not until I finally was treated for my high virals that I made it pass the 90% mark! I have also had to treat my Thyroid and now it looks like some bio identical hormones are in store.

While we spend our time trying to beat Lyme, we sometimes forget I think that even without Lyme we might have other things going on as we age or just because we have gotten ill with something else.

I truly feel we have to look at the whole big picture in treating, and not get tunnel vision...which I truly know is hard to do when we are trying so hard to get well.
 
 


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 7/24/2010 3:46 PM (GMT -6)   
1bitten2xshy said...
I truly feel we have to look at the whole big picture in treating, and not get tunnel vision...which I truly know is hard to do when we are trying so hard to get well.


Absolutely! I am making an appt with a "biological" dentist to work on getting rid of my mercury amalgam fillings, for example. I can't blame Lyme for EVERYTHING!
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


InfectedinFL
Regular Member


Date Joined May 2010
Total Posts : 59
   Posted 7/24/2010 4:46 PM (GMT -6)   
No argument needed! If Igenex was shady, it would have been proven already. It wouldn't be hard to do with the money of the CDC. So, everyone keep treating yourself the way you Dr. tells you a get better as soon as possible.
Acute/Chronic Lyme
 
200mg Doxy twice daily
IV Rocephin Once weekly
Diflucan twice weekly
Cod Liver oil daily


stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 7/24/2010 5:47 PM (GMT -6)   
1BITTEN: You said it! I am recovering from my 2nd shoulder surgery this year. I had chronic, debilitating pain for the last 4 years and TWO LLMDs accredited it Lyme, when in fact I had a structual problem in both shoulders. -- I went to an Orthopedic doctor who took a simple xray and told me I needed surgery! couldnt believe it!-- this tunnel vision applies to a few other "Lyme symptoms" I have/had.--- I have been though A LOT with these arms pf mine, it still isnt over. But it could of been dealt with properly with a simple XRAY, but they just kept piling on the ABX and herbs, sending to me an expensive, ridiculous Osteopath...We are our best advocates.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/24/2010 6:37 PM (GMT -6)   
I agree! The same thing happened to me. I have rheumatoid Arhtritis. Did Lyme cause it? I have no clue but I still have to treat it with Arthritis drugs. My LLMD kept telling me that the pain I was experiencing was from Lyme. For almost two years, I thought that all of the pain I had was Lyme related, when this entire time, it was Arthritis. I could have caught it early instead of suffering for so long.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


motox1027
Regular Member


Date Joined Jun 2009
Total Posts : 132
   Posted 7/25/2010 12:14 AM (GMT -6)   
+Lyme
 
you are really on guard, what I meant about the doctor thing was, thats good that a doctor who is not only a Lyme doctor thinks you have Lyme. So again for the 5th time you took something I said completely wrong.
 
 
Cajangirl and others. I have a question about the artritis. When people get Lyme arthrtis, like this would show on a arthritis test, for inflimation right?
 
As in people who get normal arthritis, usually this shows up on some type of test.
 
So, if you have Lyme, this should show up to right?
 
The reason I ask, is because if so, I can exclude it for me.....
 
Thanks
 
Also, the CDC has no interest in IgeneX, they are a private company and the CDC cant do much about it.
 
New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, August 20, 2017 6:50 PM (GMT -6)
There are a total of 2,857,887 posts in 313,564 threads.
View Active Threads


Who's Online
This forum has 155171 registered members. Please welcome our newest member, MariachiBand1.
395 Guest(s), 13 Registered Member(s) are currently online.  Details
RedEyedArab, PDL17, 1 day at a time, island time, Scaredy Cat, catchscooter, Sherrine, NiceCupOfTea, Fairwind, three 5's and a jack, Tim Tam, noodlesnoodles, Myself 09


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer