6 weeks of Doxy, also 10 days of biaxin/amox for H.Pylori. Think I had some herx-ing. Felt worse on abx.
I don't feel terrible. I am blessed my symptoms are not terrible. Live a pretty normal life other than fatigue, hair loss and various symptoms that come and go. Chest pain was a big complaint last 6 months but no other joint pain.
After getting off Doxy I felt the best I have felt in 6 months. Fatigue better, chest pain GONE. Hair loss stopped ON abx but immediately started again AFTER I was off abx. Call me vain but that DOES bother me tremendously.
All in all I really feel pretty normal...even, dare I say, good. How can I have Lyme??
Went to Dr. for follow up tests results this week.
STILL have Lyme!! Same bands...23 and 41. But I don't feel that bad!
Dr. wants to put me on 8 weeks of IV Rocephin?
Please be honest. It seems that many of you that do this type of treatment and continue on all these abx don't get better....even sometimes get worse!
If I feel pretty good should I really go on IV abx??
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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bettyg
Unregistered
posted
are you going to the n. texas llmd? he trained with the best llmd which is to your advantage of getting good advise.
i'm NOT been iv route! treated for 3 years only on pulsed abx for 20 months of doxy & biaxin, adding benicar and 4 days only of flexyl having terrible herz & stopped immediately.
went to 2nd llmd; she put me on 22 supplements; used up my $1,000 of pills/meds ... they made me worse! FATIGUE bad then; and horrible since then.
treating my OTHER things found wrong with me and diabetes 2 taking NO INSULIN YET has not made this any easier plus having sleep apnea and having had NO quality sleep for 30 plus years attributes to all.
on cpap machine and since feb. getting some relief! a huge step foward finally.
best wishes to you on making a decision for yourself.
are you thinking PORT OR other; name flew in/out so quickly i can't remember it!! uffda.
we have some members with CARING BRIDGE site describing what they have gone thru from day 1 ... might be helpful to read their JOURNALS.
there's another post in SUPPORT asking who has a lyme caring bridge site. best wishes; hugs/kisses
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posted
why go on the iv when the oral worked and you are feeling better. just do more oral abx. i am on the iv and i can't wait to get off and you sound like you are alot better than me
-------------------- rjf Posts: 62 | From pt pleasant nj | Registered: May 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
From what I read here, most people are not offered IV in your situation.
posted
I have only used oral abx among other supplements and herbs and it has worked for me. IMO I think you should stick with orals for a little longer.
Posts: 103 | From Northern VA | Registered: Apr 2009
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posted
Yeah, continue with orals for the reasons above. For the most part IV antibiotics are reserved for people with neurological problems, so getting an insurance company to cover them for anything else may be hard anyways.
I wouldn't worry about the bands. Once you are exposed to the pathogen your body will always make antibodies to this pathogen (more or less). After the initial diagnosis most doctors will treat mostly based upon changes in clinical symptoms.
Posts: 36 | From Corvallis, OR | Registered: Jul 2008
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Have you tried bicillin shots yet? My llmd had me try this before IV, because he has seen great results.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
This is incorrect, according to the studies presented by the ILADS doctors who lectured at the IDSA hearing.
They refuted IDSA docs' view that the more progressed the illness, the more often (IDSA doctors state-- ALWAYS -- 100%) the tests are positive.
The ILADS doctors said this is not the case *at all* and they actually see (in studies) that the longer a person has Lyme, the less likely they are to have a positive test.
And anyway, talking about tests...Lyme tests are only 30% accurate (also, according to evidence presented at the IDSA hearing).
quote:Originally posted by ebbakarin: I wouldn't worry about the bands. Once you are exposed to the pathogen your body will always make antibodies to this pathogen (more or less).
posted
My opinion is to definitely go along with your doc and go on IV. Nip it in the bud!
Kick the bacteria's butt while you still have your head above water. This could potentially be be all over with for you in a matter of 28 days of IV.
If my doctor had given me that choice three years ago, I would have taken it.
Posts: 366 | From MA | Registered: Apr 2006
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
TxLymie, I notice that you're from Houston so I'm betting that I know who your doctor is. Here's what you need to know before deciding whether to go the IV antibiotic route or not. If you use IV Rocephin (or Claforan), these antibiotics are both cephalosporins, and cephalorsporins are similar to the penicillin family in that both of these two antibiotic families are known as "cell wall inhibitors" - meaning that they inhibit cell wall formation in the spirochetes, causing it to morph into a cell-wall-less form, known as "cyst formation."
Thus, you can still be infected with spirochetes but still not be cured of the infection. Then here is what will happen next. Se will retest you and your WB test results will come back negative. Why is that?
Here's why. The antigens which the antibody tests are designed to bond with are located in the cell wall of the bacteria. But wait. Now you are infected with cell-wall-less, cyst forms of spirochetes. No cell wall = no antigen = "false negative" WB test results. And then....
And then....your doctor will tell you that you are cured, and furthermore your insurance company will tell you that you are cured and that any remaining symptoms that you still have left are because of "post-Lyme syndrome." That's when all the bad neuro-symptoms and the painful fibromyalgia symptoms start happening, and it's a downhill snowball effect ever after.
If it cures you and you do not relapse (sooner or later), then you will have dodged a bullet. Whether two months of IV antibiotics will be enough to cure you are not is anybody's guess.
Some of the experienced LLMDs are starting to combine cell wall inhibiting antibiotics (such as oral cephalosporin or perhaps IM bicilin injections) together with an advanced macrolide (such as ketek, very expensive, or oral azithromycin, generic so cheaper), and sometimes that turns out to be a winning combination.
If you were a member of my family and if you should decide that you want to take a chance on IV antibiotics, then I'd want for you to persuade your doctor to combine it with one of the macrolides. In relative early cases of Lyme disease, this combo is sometimes effective because the macrolide is a protein synthesis inhibiting antibiotic, so it works in a different way from the cell wall inhibiting cephalosporin antibiotics do.
There's another combination that is equally popular also when using one of the cell wall inhibiting antibiotics and that is to combine it with a "cyst buster," such as Flagyl (metronidazole), instead of the macrolide.
Here's a PubMed abstract that you will need later in order to (try to) persuade your Houston doctor that six weeks of IV antibiotics as a monotherapy might not be enough to kill all of the spirochets in order to prevent relapse later. Pay special attention to the last two sentence-paragraphs -- 'cause I broke it up into smaller units for easier reading. (See abstract, below)
Be sure not to lose this reference citation and be sure to discuss it with your doctor before agreeing to start IV antibiotics so that you both agree that she understands that you might need further treatment later and that you do not want to hear her say that your WB is now negative so that means that you are cured and could not possibly still be infected with Lyme disease. In fact, I'd make her sign something in writing in advance to this effect if I were you so that she doesn't try to pull the rug out from under you later if you should relapse and need further treatment.
1: Infection. 1996 May-Jun;24(3):218-26.Links
Erratum in: Infection 1996 Jul-Aug;24(4):335.
Formation and cultivation of Borrelia burgdorferi spheroplast-L-form variants.Mursic VP, Wanner G, Reinhardt S, Wilske B, Busch U, Marget W. Max von Pettenkofer-Institut, Ludwig-Maximilians-Universit�t M�nchen, Germany.
As clinical persistence of Borrelia burgdorferi in patients with active Lyme borreliosis occurs despite obviously adequate antibiotic therapy, in vitro investigations of morphological variants and atypical forms of B. burgdorferi were undertaken.
In an attempt to learn more about the variation of B. burgdorferi and the role of atypical forms in Lyme borreliosis, borreliae isolated from antibiotically treated and untreated patients with the clinical diagnosis of definite and probable Lyme borreliosis and from patient specimens contaminated with bacteria were investigated.
Furthermore, the degeneration of the isolates during exposure to penicillin G in vitro was analysed. Morphological analysis by darkfield microscopy and scanning electron microscopy revealed diverse alterations.
Persisters isolated from a great number of patients (60-80%) after treatment with antibiotics had an atypical form. The morphological alterations in culture with penicillin G developed gradually and increased with duration of incubation.
Pleomorphism, the presence of elongated forms and spherical structures, the inability of cells to replicate, the long period of adaptation to growth in MKP-medium and the mycoplasma-like colonies after growth in solid medium (PMR agar) suggest that B. burgdorferi produce spheroplast-L-form variants.
With regard to the polyphasic course of Lyme borreliosis, these forms without cell walls can be a possible reason why Borrelia survive in the organism for a long time (probably with all beta-lactam antibiotics) [corrected] and the cell-wall-dependent antibody titers disappear and emerge after reversion.
PMID: 8811359 [PubMed - indexed for MEDLINE]
One more helpful piece of info for you to be prepared with when you talk with your doctor is to print out a copy of Dr. Burrascano's Treatment Guidelines and read them over several times yourself prior to your next appointment so that you are quite familiar with them. (Warning: This PDF document is 37 pages long.)
Oh, wait, one last thing. Have you been thoroughly tested for all co-infections also. If not, then I'd get that out of the way first before using any cell wall inhibiting antibiotics -- for the very same reason as above, namely, that the use of a CWI antibiotic can cause you to have a "false negative" test result for other pathogens also. Lots of patients carry more than one tick-borne infection because the tick that bit them was infected with more than one pathogen.
Therefore, I'd take the extra precaution of ruling out any/all of these other tick-borne pathogens before starting to treat Bb with any IV antibiotics.
Be sure to insist that she send your blood to Igenex Lab for these other tick-borne pathogens, but be aware than even Igenex does not have a good test for the strain of Babesia that we have down here in the South, namely, the MO-1 strain, so you could still get a false negative result for Babesia in spite of adequate pre-testing prior to IV antibiotics.
PS - I'm editing to add that I just now re-read your original post and I realize that you have already had 10 days of amoxicillin (with biaxen) to treat H. pylori. Hopefully, that little bit wasn't enough to mess up any of your test results for other tick-borne co-infections, especially considering that you still tested positive on IgM for Bb after having use amoxicillin.
There's (probably) no worry about either of the other two antibiotics you've already taken (doxy or biaxen) because they are less likely to cause the abrogation of the walled-form of the organisms which the diagnostic testing is designed to recognize. Remember what I said above about "no cell wall = no antigen = no antibody response = false negative test result."
So, let's hope that it's not too late (yet) for you to be tested for these other tick-borne co-infections -- but remember, it will very likely be too late later to test for them after you have already had several weeks of IV antibiotics.
Special note: There is one abstract in the medical literature that says that doxy can do this, too, but in our experience -- based on before and after test results -- doxy wasn't a problem, but that's not to say that long-term use of doxy might not do the same thing that the penicillin &/or cephalosporin family of antibiotics is capable of doing -- that is, of causing a "false negative" test result during follow-up lab testing.
My vote is that the odds are pretty slim, but it would still be very wise to get all of your pre-testing for all of the possible co-infections done in advance of starting any kind of long-term antibiotic usage, whether oral or IM or IV.
Posts: 4563 | From TX | Registered: Sep 2002
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I would not do IV antibiotics since (1) you don't feel that bad (2) you don't have very many bands, so you may not even have lyme (3) you say you have chronic mono...what makes you say that, and have you considered treatment for that?
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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WildCondor
Unregistered
posted
If you dont feel that you are that sick, and you dont want it, then tell your doctor. Orals might be just fine for you. Tell the doctor what you want and what is best for your lifestyle. IV has more risks, and isnt very fun to do, so oral combinations are good. I also see a RED FLAG when you say your doctor only wants to do 8 weeks of rocephin. Putting set time periods on your treatment sounds irresponsible. Your treatment should be open ended based on your response to therapy. be more proactive!!!
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Tx Lyme Mom- I need some time to absorb all that but I really appreciate the explanation. I will read up on the things you said. As I suspected it almost seems that I COULD get worse on IV abx...especially if I don't have the cyst form yet and the IV abx might cause that? Am I getting that right?
BettyG- I don't go to the N Tx LLMD. I have a Dr. in Houston who is Lyme friendly and my insurance is covering everything so far. Sounds like you have been pretty sick...why no IV abx prescribed?
SaveBabe - What are bicillin shots? I have been taking glutathione shots for about 8 weeks now for low ATP levels. It seems to have helped my energy level
Timaca - I have had tested positive for mono 3 times in the last 8 months. I had mono when I was 12 and I know the EBV virus always stays in your system but apparently mine spikes up to full blown mono (every time it has been related to stress). What can I do about chronic mono? My Dr. hasn't given me any advise on that...guess I have been too focused on the Lyme but I am beginning to wonder if the mono is my more serious problem.
Oh, I also got tested for co-infections and was negative. From what it sounds like, even if you have a co-infec it is hard to get a positive result? Even from Igenex? So how will I ever really know.
Last Question: Is it possible to get a false POSITIVE for Lyme??? Any chance my H.pylori and chronic mono may have caused the false positive? HP is also a spirochette bacteria
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
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