posted
Im a patient at this new LLMD. Ive heared very good things about him, however he is a bit strange when it comes to treating lyme because he believes more in chlamydia p. in my case.
I have high chlamyida p. - he put me on doxy and diflucan. He thinks it hits lyme/chlamydia at the same time and yeast.
Well... i felt like CRAP from the doxy, although i tolerate the minocycline pretty good for a long time the doxy hit me really really hard. I was feeling like sliding back after 7 days on that combo. Not better just getting worse.
I dont know why he believes my lyme is already "down" and im only dealing with chlamydia... because i had classic lyme relapse symptoms. It was brutal.
Than i did some ceftin on my own and felt better within hours......................... and that drug does not hit chlamydia.
I dont know i feel hes missing the point. He does not want me to add any abx to his protocol. Dont know why.
Now i have rashes on my feet with small red dots that look like popped blood cells... this could also be another overlooked coinfection.
What do you think about my doc? I dont know whats the deal. I could just add the ceftin to what he wants me to do. I dont see the point in "less abx" if i tolerate it well... really...
Posts: 141 | From cali | Registered: Nov 2012
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Red dots on feet, Bartonella. Especially if they appeared after you started antibiotics.
Not sure why he's focused on Chl. pnemoniae. Although, he's giving you drugs for lyme and it sounds like you are herxing.
poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
When you switch to a new drug, it can cause a herx. I have red dots and no bartonella. This is a sign of vascultitis, which can be infection caused, not specific to one infection, IMO.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
Many LLMDs treat with 2-3 abx at the same time. I think that is what she means by "he won't add more abx."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Your doctor's emphasis on Cpn may be necessary. Sounds like lyme is not at all being ignored. Other tick-borne infections can also be addressed along with Cpn & lyme.
He may not want you to add another antibiotic at this point but you need to be clear on his plan for the futher. Cpn treatment IS a "CAP" (combined antibiotic protocol).
Still, maybe your body cannot tolerate more at this particular time.
One important part of treatment, though, it does not sound like you are on liver support (or informed about taking precautions so as to avoid complications with "secondary porphyria" similar to intense herxing).
Better communication with the doctor is important so you have a better idea of what the plan it along the way. First, though, you may want to explore what Cpn can do (terrible things) and why it's so important to address it when it's chronic.
Many with lyme also have Cpn and it's best addressed than ignored - although treatment for lyme and Cpn does mirror the other.
If a doctor is under risk of not being able to treat for lyme, if a patient also has Cpn, it may be easier to just focus on that, still, in all intents and purposes, still covering all the bases.
Diagnosing Lyme Disease (&/or whatever else is going on)
Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say that you then: "did some ceftin on my own and felt better within hours . . .
Now i have rashes on my feet with small red dots that look like popped blood cells... " (end quote)
Could ceftin have caused the rashes on your feet?
Be sure to take photos and share with your LLMD, along with the timing of them after Ceftin. He needs to know this in case it's a reaction to Ceftin, a sign of other TBD, or other reason.
It's best to not take antibiotics that your doctor has not prescribed, there may be reasons why. Of course, that you did and saw improvement is something that does need to be discussed with your doctor for 2 reasons.
1. there may be things you don't know about this with your body, things that are not evident at this point in time but that you got some relief is something that I think needs discussion.
2. an good doctor should be understanding of WHY you did that and then take the information and work with it. He will better understand all the actions of Ceftin and if there is a clear cause and effect and why.
It's important information so I think it's vital that you learn more about Cpn and also establish better commuincation with your doctor so that you have a better picture of his reasoning and plan.
Several on the Cpn protocol have posted about using Ceftin - I don't have energy to search out the discussion posts from its reference in the professional materials but be sure to read the physicians' reference links here, too:
CpnHelp site search: Ceftin -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Looking back at your posting history to get a better understanding of your situation, a question comes up about tolerance to beer. You posted a few months ago that you seem to do fine with it. ( http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/121864#000006 )
Just to be clear, I hope you meant in the past and not now. If beer is part of your life now, that could be part of feeling awful. No reply is needed, just wanted to be sure you knew that all alcohol is to be avoided during treatment for any chronic infection.
As you wondered in that thread though if, perhaps your tolerance to beer meant that you did not have lyme, it's just not that clear.
Most with lyme have a terrible reaction to just a little bit but sometimes, someone may not. Still, there are chemical reactions in the body that can happen with infection and with Rx, so avoidance is vital.
Some who did well in the past have found that that could change overnight, too.
I'm not sure that I can find any puzzle pieces from your other pasts posts that can help with your question today.
The bottom line is that I'm not sure you know as much about HOW your doctor plans to treat in the long run (or as much about Cpn as possible) so I hope you can learn more to figure out if this is the best doctor for your case.
Talk to those in all area lyme support groups within a reasonable radius to your new doctor. While each person, each case, is different, you may learn more about how this doctor works for others.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
i had the red dots before i started the doxy/diflucan.
ceftin does not work for cpn. i know the CPNhelp.org page. he has his own protocol, its just a special CAP. doxy/diflucan also works on yeast. http://www.ncbi.nlm.nih.gov/pubmed/22564841
for liver support i take milk thistle and other supplements. im not sure its enough. i also take binders like charcoal and zeolite. anything else i might wanna add?
i meant that my doc is strict with his protocol. he is against pulsing tinidazole and he does not support the use of any other abx in conjunction to his regime. he always uses 2 abx at the same time. he is not very lyme literate but CPN literate...
let me get to the point: i was feeling awful thats why i did add ceftin and i felt better. i dont feel so psychotic and awful anymore. theres nothing worng with that. it does not work for cpn, just for active lyme.
the red dots were especially visible after doing some parasite treatment.
Posts: 141 | From cali | Registered: Nov 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- See the Liver Support thread for other considerations. Be sure to see the Porphyria thread, too.
If he does not support the use of any other antibiotic in conjunction with his regime, sounds like he's not really fully Cpn literate, either (at least regarding the work of Wheldon and Stratton).
Rarely, will the same protocol work for everyone, whether with lyme or Cpn. Rotation is very helpful along the way, mixing up combinations (with thought behind that, of course).
Sounds like you may need to find a doctor who has a wider educational base and a wider range of approaches.
However, the diflucan / doxy approach has been helpful for some. And, yes, when on that, it's best to stick to that for a while. Then, later, other combinations may be explored.
So, before cutting ties with your doctor, you many want to read more about diflucan's use and also do talk to him more about WHY he makes the decision he makes.
Unless you have an open conversation you could be making a mistake just walking away. You need to know WHY he thinks as he does. There may be very good reason.
There is a doctor in Germany (or an adjoining country) who had success himself with Diflucan (but I think he also used penicillan).
You should be able to find an abstract of his work. He last name started with an "S" I think. Just go to PubMed and cross search:
Diflucan, Borrelia
But, then go beyond that to search the doctor for articles and reports after that date. The time was expanded to 50 days, with rests and then repeating that pattern as often as the patient required.
As with all protocols, effective varies. And by the time we see an article, doctors may have been on to something even better. This is why it is important to understand as much about how your doctor thinks as possible. Only then can we know if or when it's time to move on -- or to stay that course.
Has he written any articles, books or presented at any conferences where he may have explained his thinking to others? If so, you might call the office manager and ask for any materials that can help you better understand his approach and who he holds in high regard in the field. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I take omnicef (which I think is related to ceftin), doxy, and rifabutin. Flagyl is pulsed for just 2 days, sometimes along with diflucan. I feel better too when I take omnicef - my head clears up and I can actually think straight. But, I'm not sure it's omnicef or just the combination. I am also given the option to alternate septra and doxy. So one month take septra, the next take doxy.
Posts: 618 | From NC | Registered: Oct 2009
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posted
i have the same with the clear head. i have a similar effect on iV rocephin.
i dont see the point why i SHOULDNT add ceftin to my current protocol and i TOO dont see the point why i shouldn't use TINIDAZOL pulses... i would cover more bases.
Posts: 141 | From cali | Registered: Nov 2012
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
That's interesting that those red dots came out after parasite treatment. What did you take? Are you still treating parasites?
I can't believe how long it takes to treat! I've been at it for almost 11 months and I'm still loaded. So hard to believe....
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
In 2005 when i had no lyme diagnose, i found small red dots on both of my feet. I made same photos of it but never found anything that would fit. At that time i thought i will never have lyme because of negative bloodtests - my doc told me so. I had to take a penicillin for an infection and i felt sooooo good in these two weeks it was almost impossible.
I did paraGONE. After day 2 i had TERRIBLE itching in my face and over my body. I first thought its an allergy but after 2 days it was gone and i saw these dots again... I dont notice much change and i havent looked into the stool. But my bowel movements are more frequent now after the first protocol. I plan to repeat it soon.
another proof that ceftin works: my muscle strength is better. nothing has worked for that. i tryed: testosterone gel (i smell like crazy from it), growth hormone, eating lots of protein, whey, BCAAs, cordyceps - you name it everything under the sun even hydrocortisone/florinef.
now the head is clearer and the muscle strength is better.
Posts: 141 | From cali | Registered: Nov 2012
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posted
Same here. Muscle strength improves (I get what I call "rag doll" syndrome when not on meds) and head clears up. I can accomplish a lot of tasks. I pulse antibiotics, so I definitely can see a distinction between my off and on weeks. Off weeks I feel easily confused, can't organize my thoughts. On weeks I'm cleaning the house, organizing everything...although I feel sick still.
Posts: 618 | From NC | Registered: Oct 2009
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