posted
So I finally did it. Went to see an LLMD yesterday for the first time (I have been seeing a Lyme friendly doc for 8 mos).
Honestly, I can't say he gave me much more info/advise than my lyme friendly doc. He was a great listener, understanding and knowledgeable but nothing earth shattering.
He seemed very perplexed by me. I guess I don't follow a typical pattern. In a nutshell he was confused by my ability to get better off abx (just supplements) and the fact that I didn't stay well on abx. Here is a brief history:
dx on June 12, 2009. 6 weeks Doxy (200mg), felt better and better
Got off abx for 1 month; started to feel bad again
Took Ceftin for 3 months; had herx but then felt better for a while, then up and down for 2 months.
End of Oct. Took myself off all abx since it didn't seem to be helping much and I was getting yeast infection; Only did supplements from that point on
Nov- Felt terrible all month
Dec/Jan Felt almost completely well (90%) with NO ABX and no herbs.
Feb- Started feeling terrible again (
LLMD is confused that I feel good/bad ON abx and then good/bad OFF abx. He found it odd that I got better for 2 months without taking any abx and no herbs.
He seemed to think I was a strange case. His recommendation, because I had GI and yeast issues with Doxy and Ceftin, is to take Minocycline until I feel better and then 2 months beyond that to make sure we kill all the lyme.
I've read and researched so much (and listened to you all here..thanks!) that he really didn't have much new to tell me. He really didn't give me any new info other than taking a different abx and adding magnesium to my supplement list.
He claims to have 350 patients with most of them going into remission.
Does this sound right to you all??
Am I really that strange of a case?
-------------------- 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
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Who's your doc?
first letter of last name and city?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- First of all, "strange" is relative. Everything looks different in lyme land and everyone IS different.
However, it would be very rare for a real LLMD to tell any lyme patient that their pattern of experiences is "strange" or have a "strange" reaction. A real LLMD has seen the full spectrum and knows there is no normal.
In writing, we all may over-react to any doctor saying that the experiences any lyme patients has is strange - but - it can also have so much to do with tone of voice. A lot can get lost in translation. I'm assuming he was still very sincere and obviously, ready to still work to resolve the case.
But, to be more sure of his expertise, how did you find this doctor? Is he a member of ILADS (or at least "ILADS-educated" and continues with his education)?
Did he assess coinfections?
And, just what supplements were you on during the abx breaks that had you feeling better? But - just being OFF antibiotics would help feel better in some ways, especially with stomach - but my guess is you did not feel back to normal health in all important ways or you'd not even be looking for solid answers. So you might have just been outrunning the side-effects.
Did you also take supplements when on abx ? If not, that's a big part of the puzzle. Maybe they weren't the right ones?
Have you been gluten-free from the start?
If you are going to take minocycline, you need to be a liver support supplement, B-6 and have ginger capsules on hand. Mino has really helped many. However, you need to plan so as to offset effects to the inner ear/balance system that some experience. Being on liver support before starting is best, taking at a different time.
Milk Thistle is the most common one but, if you have been at this a while you should have all the support suggestions at hand.
Olive Leaf Extract (OLE) can help prevent and manage candida. Of course, continue probiotics - and at a different time than either abx or OLE.
Glad to see you will add magnesium - if you were not taking that when on abx, that also can explain why you got worse on abx. Magnesium is so vital.
Good luck with your new path. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
My LL doc will say, "hmmm" when I tell him certain things, and when I invariably express the anxiety I feel (unreasonably) at the thought that there I am 'strange' and therefore incurable, he will say, "oh I have seen it before" and go on to thoughtfully articulate a host of possible explanations and approaches. It is truly terrifying to a sick, anxious and vulnerable Lyme patient to be told they are "strange."
Posts: 360 | From New York | Registered: Oct 2009
| IP: Logged |
ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
TxLymie - Not sure why your LLMD would be perplexed by what you've described to us, unless he or she said something that you missed or forgot to tell us. I'm going to assume you're accurate in what was said, etc. and first question I have, Keebler also asked - Have you been tested for co-infections? If so, was test positive? If not, is LLMD willing to treat you for co's anyway?
Good/Bad while On/Off abx is not strange (at least to me). You feel bad, start abx, which kills infection, so you feel better. While on abx, toxins from dead bacteria build up and you feel bad (herx). Go off abx and no more herx, toxins leaving body, you feel better; but once bacteria begin to reproduce again you feel bad again... And the cycle continues. I went through about 5 years of this and many of my TBD cohorts did (& still do) also.
350 patients with most of them going into remission... This is good. However, they must not be in remission yet and there's a big difference in "going into remission" and "staying in remission". I've also experienced both of these.
Minocycline is a good choice, esp. if you have neuro sx's, but can be rough, as Keebler mentioned (inner ear, etc). My guess is you got an rx for total of 200mg/day?
Let us know how you're doing.
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
350 going into remission? Yeah, sure. That's BS if you ask me. My LLMD supposedly had a 90%+ cure rate and 97% response rate with Abx. Sorry, I don't buy into any of these self-reported stats. When I ask around, I don't hear 9 out of 10 being all well. Gotta do some thinking/research for ourselves IMO>
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I've actually heard of A LOT of people who are done with Lyme treatment. They live normal lives and have been for awhile.
It's definitely motivating but also frustrating at the same time.
They make it sound so easy... when reality is they went through the same crap we're going through. I tend to forget that.
Even when I hear about TF's success... it's easy to forget that she went through the highs and lows as well.
We just read/hear about the success stories and forget that the road it took those who've recovered... wasn't an easy one.
I'm sure when I'm yrs into my remission I'll be doing the same thing.
I bet you tend to forget just how bad it was.
I know since I've started abx's I've recovered 80% and some days 95%... I catch myself forgetting just HOW FAR I've come.
Getting from 80% to 100% is much harder than getting from 30% to 80% in my opinion.
I just need to get over that last hump (co infection, hormonal imbalance, nutritional deficiency, immune efficiency, etc)
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
TXLymie- I have the same questions as Keebler. Is he an ILADS member and did he test or evaluate for co-infections?
You wrote: In a nutshell he was confused by my ability to get better off abx (just supplements) and the fact that I didn't stay well on abx
This is a very typical pattern and easy to figure out so either he is not an ILADS LLMD or there is a misunderstanding on either your or his part.
You wrote: His recommendation, because I had GI and yeast issues with Doxy and Ceftin, is to take Minocycline until I feel better and then 2 months beyond that to make sure we kill all the lyme.
Most LLMD's use clinical judgement in treating. They will change the plan as needed based on your clinical response so if this plan was presented as set in stone, I would consider that another red flag .
I am most concerned about the co-infection issue for you. Have you been tested or evaluated? If this doctor did not even mention testing and you have not been tested before then I would be VERY concerned that he is not an experienced LLMD.
ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
quote:Originally posted by canefan17: They make it sound so easy... when reality is they went through the same crap we're going through. I tend to forget that.
canefan - If I EVER make the TBD experience and tx sound easy, please let me know because it's the one thing I try very hard not to do. It's extremely difficult and many times, very long term and I and others on this board try to be very upfront about saying so. (Not fussing at you, just want to make sure I'm not doing this, you know?)
TxLymie - None of us really knows what was actually said between you and your LLMD. If indeed it's the person that I think it is (No. TX?), then I believe he trained with Dr. B. Please try to take very accurate notes at your next appt and post allowable info to us. I know you feel like dog dirt right now; been there, done that and hope to God I never have to do it again... Hang in there. If you need another TX, born and raised person to communicate with, you're more than welcome to email me and pour your little heart out... Sometimes, it just needs to be done.
Gary - While what you're saying might or might not be true, this still doesn't tell any of us what was said, or done at the appt. I tend to be of the opinion that long-term experience treating these illnesses counts for a lot, but there aren't many choices in TX right now and TxLymie might very well need to preserve the relationship with this doc.
Hang in there!
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
| IP: Logged |
gwb
Frequent Contributor (1K+ posts)
Member # 7273
posted
Is this Dr W in North Texas? If so, pm me and I will give you my .02 cents worth.
If this is the doctor, let me just say this, he and his wife both had lyme disease. He desires to help people with lyme get better, however, he's a relative newbie in the lyme business.
For simple cases, he could treat you and get you well. For more complicated, advance lyme patients, he's not there yet. My opinion, and my experience.
PM me if this is the doctor and if you want more info,
Gary
[ 03-11-2010, 07:38 PM: Message edited by: gwb ]
Posts: 1349 | From OK | Registered: May 2005
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
ping, Ya I gotcha. You're definitely a straight shooter lol
gwb, That's my opinion of him as well.
He's fairly new to the scene... he's sending people into remission(herbal maintenance after abx's)...
But even he still treats Lyme on occasion. He's not even out of the woods yet (no pun intended)
First, I did a lot of research before going to an LLMD since it cost me out of pocket. I got a lot of good feedback and this doc supposedly treated George Bush (have no idea if that is really true). Dr. F in La is who I saw.
I liked him well enough and I don't think I misinterpreted what he said but that can always happen. To be exact I guess he did not call me "strange" but he did say he was not used to seeing patients like me that were able to get better off abx and no significant supplements so to speak.
I've taken pretty much the same supplements on/off abx. Those are: Pro-biotics OLE CoQ10 Vit E Fish Oil Vit D B12 Zinc (added in Oct) Glutathione shot 1/week Kombucha (added in dec)
I have not been gluten free ever but I do follow the no carb, no sugar lyme diet to the best of my ability.
To be fair I have seen a lyme friendly doc in Houston who this doc really respects. I had a notebook full of labs, history, doctor notes etc.
Dr. F did say that there is no doubt I have lyme and that he did not see any reason to do Igenex. I'm CDC positive from 3 different labs. I've been tested for co's but negative on that. I'm surprised he didn't seem to think I needed more testing on that as I do have babesia symptoms.
He did of course say that lyme can act very differently with each patient. He just seemed surprised that I work full time and that I have months where I am almost 100%. And for Dec/Jan I really was. No symptoms to speak of other than slight fatigue and hair loss, then BOOM, Feb comes and I am terribly sick again with aches, flu like, muscle pain, vision problems, night sweats, shaking in my sleep etc.
Even though I spent an hour with him I don't feel like I walked away with much. Maybe because most of what he suggested I was already doing. Also most of the stuff he told me, I already knew from reading, research and lymenet.
I think he has seen lyme patients for 8 yrs. On the remission part he did say it took some people a very very long time but that it is possible for most to get well if you stick with the treatment.
Not sure it was worth the money/time since I didn't get much different advise than I have from my lyme friendly doc here. I think Dr. F probably thought I was a brand spanking new patient in for first time treatment.
TerryK, the plan was not "set in stone". He wants to talk with me again in a couple of months and we may adjust protocol depending on how I am doing.
-------------------- 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
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- no carbs with abx can be far too rough. You need carbs to help keep porphyrin levels down. Increased porphyrins can result from infection, stressed liver and from meds, too. If they increase too much, one can feel much sicker.
So, if you are "no carb" as in "none" that will seriously put you at risk of increased porphyrins during abx tx.
A steady supply of low to moderate carbs (with other good foods) are important always but, especially, during abx tx.
Carbs are good for us: you need those vegetables, lots of them in all the colors you can find. Some dark berries can work, too, but the carbs in veggies and quinoa ("keen-wa" a non-gluten grain) are all good.
If you are "no" carb, then you would also be gluten-free. Gluten is in wheat, barley, rye and spelt. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
TxLymie,
what about Dr f's comments are you surprised by?
You do seem to have a strange treatment pattern.
Better OFF abx and gradually worse ON abx.
That's an unusual pattern.
the good news is you are in good hands.
he sees no reason in testing the coinfections because all of these LLMD's are doing it clinically.
My LLMD told me the same thing. I asked if I should retest for bart or babs and he said, "What's the difference we're gonna treat both anyway."
he's right.
Time for you to trust your LLMD. You're spending enough money to relax anyhow : )
I have to remind myself to do the same thing.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Glad to hear the treatment is not set in stone. Maybe it would be worth it to get a slide from one of the labs like Fry or Clonagen if you relapse again after going off abx?
Personally I feel better with someone who keeps up with the new info on lyme and co's. I think most people need someone who is experienced because of exactly the situation that you are having. A relapse shortly after going off abx.
As far as the LLMD being perplexed about why you got better after going off abx, that is very puzzling to me since even the IDSA doctors used to tell patients to wait for awhile after going off abx for improvmenet. Presumably the body has a chance to clear some toxins. It is a very common scenario for lyme patients and nothing new.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
posted
Canefan, I guess I was surprised he was surprised. I figured he had seen everything and he literally was scratching his head saying I was "unusual".
In a way I guess that is good. I could be so much worse off. At least I have those months every now and then that I feel 90%!
Keebler, I guess I shouldn't say totally carb free. I mostly just gave up all breads, potatoes, rice, anything white... I did not want to get yeast, but that happened anyway (on Ceftin).
-------------------- 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
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, I wondered but there have been some people who tried to give up all carbs, totally. I tried that years ago and nearly died. I had taken something I read far too literally and without full definition.
Glad you hear you are eating vegetables galore with EVERY meal?
Giving up all those processed white carbs is good as they are the simple ones and a "complex" carb bunch we should be.
There are some fabulous very dark red and black rices, too. Quinoa is a life saver for many, though. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
Ya giving up carbs all at once is dangerous.
Shocks the body and can be no bueno.
keebler,
Should one exclude quinoa and rice and shine cereal if they are trying to avoid yeast?
I don't mess with simple carbs at all or breads.
But I do like to get some complex carbs from quinoa or my rice and shine cereal. Does this pose a problem with yeast?
Also.... do cashews, brazil nuts, or almonds pose a problem?
i've heard avoid peanuts....which i do... but didn't know if fats could mess with yeast.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
| IP: Logged |
ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Hello again!
Okay, your last post put this into better perspective for me. I still don't think your case is all that "unusual", I really don't.
What does concern me is the way you described your 'crash' in February and the fact that you've tested CDC+ with labs other than Igenex (nothing wrong with the tests). This seems a rather ominous sign to me that you might need to stay more with the abx and really lower the bacterial load. I know you like your supps, but be careful not to derail your abx. And what's with no MAGNESIUM supp there? Or did I miss it?
Good thing the doc recognized the need to treat for co-infecs, even if you tested negative cuz I guarantee, you've got'em.
Bet I know the doc you see in Houston; likely the same one I see. You were and are very, very smart to have prepared for this the way you did (and do). Saved yourself a world of hurt.
Keep us updated!
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hmmm, just exactly what are your igenex tests results? they're pretty conclusive.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
posted
Ping, you know, I have no idea why I hadn't added magnesium other than I just get so overwhelmed with all the things I *could* do to get better that I often shut down and don't remember all I've read.
Keebler and several others told me to add magnesium recently and it was also something Dr. F pointed out so I've started with that.
Yes I suppose I didn't do enough abx. I just absolutely hate hate being on them. Hopefully minocycline won't cause me as many problems...Dr. F thought I might do better on it.
Also, I saw a naturpath OB Gyn a few weeks ago and he is reommending armor thyroid, as is Dr. F. I am in normal range but I have 80% of the symptoms of hypothyroid. So maybe all these things will help.
Lymetoo, I feel nearly well about half of the time and I feel nearly dead about the other half!! I just got the abx today and funny enough I've had about 4 days of feeling really good...no 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
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic